Just a quick episode reflecting on Heather's story and the difference between "functional" or "integrative medicine" and "alternative" medicine.

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Heather's web site is: https://heatherjose.com/
and her podcast is here on YouTube at: https://www.youtube.com/@ImStillHereCancer/videos

Kathleen does zoom based peer navigation/mentoring sessions now. Schedule a session here for a sliding scale of $35 to $95 per hour long session: https://kathleenmoss.simplybook.me/

Transcript:

 Those of you listening on the day that this episode is released, happy Easter to you if you celebrate Easter. I'm just here again just me reflecting on some of the things we talked about in the last episode with my guest, Heather Jose. Her episode was packed full of controversial issues and I'm just gonna cover a couple of them today.

And also wanted to give you a heads up that I may not be putting out episodes in the next couple of weeks. I've had a couple of guests cancel and have to reschedule, and then my dad just passed away this last week, and so I'm not able to reschedule with them soon. I do still intend to put out, um. Maybe three or four or more episodes before I take a break for the summer though.

So I will be back at some point probably in May and not in April. Um, but don't worry, I haven't finished this season quite yet. So just to get back to last week's episode and some of the topics discussed with Heather, I wanted to talk about her complimentary or integrative, uh, approach to her oncology, the fact that she worked in tandem with both the conventional system and the lifestyle medicine system.

This can be really confusing for folks who aren't familiar with. The world of functional medicine or even nature paths. There are so many different types of cancer experts, so-called experts in the world, and some of them are, are highly, you know, board certified and backed up with lots and lots of education and others of them may not be.

All of them claim to have some interest in some kind of research, or usually they do, but not all of them have really solid research behind their practices, and so this can be really confusing and really expensive and kind of scary for the typical patient to explore. I have a background, personally,

I'm a functional nutritionist, so I have a lot of experience with telling these kinds of schools of thought apart. And unfortunately in cancer there's a lot of quackery. I think there always has been. Throughout history with cancer. There's a lot of, um, people making false claims or really, really naive claims without a lot of research behind them.

And this. Movie that we talked about that Heather and I were talking about briefly in the last episode that just came out on Netflix recently called Apple Cider Vinegar is a really good example of a couple of different really scary elements, um, in this kind of shady practice. In the movie Apple Cider Vinegar, which I'm not sure if you'll be able to watch as a cancer patient. For me, it was excruciating. It took me a couple of months to get through this very short series of episodes because it was just so painful and uncomfortable and cringey for me to watch. Just, just a really unfortunate story that seems to be somewhat true, um, that takes place in Australia.

But, uh, there were two elements that were disturbing. One was that this one character in, in the film, which the film kind of was focused on, was completely lying. She was a sociopath and coming up with dietary measures for people to fix or. Cure their cancer through As someone who had never had cancer and was claiming to have cured her own cancer, that really never existed.

Of course, that is a bizarre and disturbing story to watch for anyone. I. But then there were a couple of other characters in the movie that were kind of,, carrying on a claim for themselves, and they did have cancer. they were looking into all the alternative to conventional medicine options that were out there in the world.

There were things in Mexico and South America and, um, different in indigenous practices and. , it didn't go into all the details of all of them, but the really poignant part of the story was the death of, of one woman who became kind of a thought leader and influencer of other cancer patients. And all the while her cancer had been progressing and she was denying that.

And, it's a really good wake up call for those who are seeking the alternative kind of solution to cancer in in our world right now. I think we need to have that kind of sobering reality brought to us every once in a while, and yet people like my guest, Heather Jose, do feel like lifestyle changes, diet and exercise and stress.

Related and sleep related changes in their lifestyle have made all the difference. So there is, there is something to the lifestyle end of things. And I think for me anyway, in my, in my research and my exploration, I have found that functional medicine is the best kind of mediator of the two, um, of natural and integrative and complimentary medicine.

Approach to cancer as well as medical, conventional medical, because most functional doctors are actually MDs. They're, they're fully trained in the conventional system, and then they go beyond that to get trained in the lifestyle medicine, complementary or integrative, depending on what. Label you wanna choose, and the difference is that they look for the root cause

so they're going back to the origins of the disease, which only makes perfect sense to you if you're a scientist like it. It would make sense to most people who are scientifically minded and Dr. Block. My impression is, um, when Heather went to Dr. Block in, um, Illinois, that he is one of those functional type doctors.

He is an MD so he is certainly a, a full fledged oncologist, but he's also looking into some of the other ways to compliment that with natural and lifestyle approaches. And I'm really hoping myself that he does not get shoved under the bus as we are watching films like apple cider vinegar, uh, because there are very few people like him that bridge that nicely, that really embrace both sides of the continuum.

And I think that is where the most hope lies personally. Um, I've talked a little bit about my enthusiasm for exercise oncology. As a nutritionist, I have seen literature. Across the board with nutrition and it is really messy. It's really hard to establish whether or not food can be the reason for certain outcomes, positive outcomes, and lowered risk when it comes to cancer, because food is just really hard to isolate in our, you know, study of our habits.

It's, it's not something you can. Crystallized down to one behavior, well, the way that science kind of needs us to do. But exercise and sleep and stress are much easier to get crystallized down to a single behavior or outcome. So I have a lot more confidence as a nutritionist, even as much as I've studied and as much as I do believe in nutrition, I have more confidence in exercise and stress reduction.

We, we are so young in the world of science, and that's why it breaks my heart that so much science is being, dismantled right now with our current political situation.

But I just wanted to clarify kind of how I separate out these things, and I just wanted to say again, how blown away I am that Heather is out there sharing her story every week, just the salt of the earth, the most down to earth. Human being, not making any wild claims. She's the opposite of these personalities that you see in the Netflix series, apple cider vinegar, where they're just so confident about the reason that they got better, supposedly got better, which neither of them did.

Um, whereas Heather has stayed cancer progression free as a stage four patient, which is remarkable. It's not unheard of. There are other women like her who've lived 20 or 30 extra years with stage four cancer without. Any extra meds, even like her not having a whole lot of lifestyle inhibition by the drugs that she takes, but, uh, but that is pretty rare and I just love that she's sharing incrementally how she's doing week by week and staying on with her kind of. Regime of, of strict lifestyle habits with diet and exercise and stress, reduction in sleep, habits to increase the quality of her sleep.

So I just love, I love having her in the cancer community at large, not just breast cancer, but the larger cancer community. 'cause I think she gives people hope. And one of the things that Heather and I talked about was the placebo effect, the fact that. Patients do better when they believe they're doing something themselves that makes a positive difference. And I think this is true with any patient taking just about any drug. Um, for anything really, it's, the drug is so much more powerful when we believe that it's making a difference.

But it also can be true of our lifestyle choices, our dietary habits, our sleep choices, our stress management. You know, our exercise habits, all of those things, if we believe they're making a big difference, that makes our body all the more powerful, somehow in some magical way that we don't understand and that science can't really capture.

But it's called the placebo effect. And Heather was saying that she's a big, a big fan and believer in that in mindset, um, and mindset. Is not just a hocus pocus, you know, belief in something that's false, but it's a belief that the small things that you're doing, even though you can admit that they're small, make a big difference.

And so I think this is a great reminder to all of us to choose something, you know, whether it's green tea, like her first oncologist told her to just to go out and start drinking green tea. And then we'll talk about getting rid of this cancer next week. Um, whatever it is, eating more vegetables, eating more fruits, eating more whole foods and less, um, dirty meats and dairy products maybe.

I would just encourage you to choose some small thing that you can do that you've decided is warranted. Whether it's something you've read or a doctor's told you, um, do some small thing, not believing that it's gonna cure you or make everything get better, but that it will make a difference. And feeling empowered in that process, I think makes a huge difference for all of us.

There is one other movie that just came out on Netflix that I was thinking about talking about 'cause I just saw it today. Um, having just lost my dad, I'm really interested in some of the choices that we make around the time of death. And one of the things I wanna do sometime in the next year is to take a course on end of life doula/end of life planning, because I have friends that have been diagnosed with stage four and I wanna help them--people like Danyel that I would like to help plan the last days and weeks and months of their life. Um, I'm, I feel equipped to do that. And so I'm always interested in movies that talk about death and explore and watch death and few movies do this very well. Like my friend Christine Handy was saying in, in my interview with her, most movies about cancer patients will show them getting sick and then dying immediately, and boom, that's the end of the movie or that's the end of that scene or that person's character role in, in whatever story it is. They don't really address it. They don't. Stretch it out and watch it because it's uncomfortable, it's painful to watch.

And this movie that just came out on Netflix called The Room Next Door with Julianne Moore. And Tilda Swinton is a really good example of that. It's not a comfortable movie to watch. It is the least entertaining movie that you've probably ever seen. It's an awkward, drawn out movie with lots of silent parts and hesitations, which as Americans were pretty uncomfortable with, I think.

But if you're interested in the subject of death and especially euthanasia, I think that it's a really interesting movie to watch. I didn't love the acting. I'm not a huge fan of Tilda Swinton. I just don't love her acting for some reason. So I don't recommend it as an art piece or something to admire, but just something to.

Draw your thoughts out on death and as a cancer patient, I think we can be less afraid of recurrence or stage four diagnoses if we are willing to ask some of the harder questions about what we would do if we were diagnosed and if we were facing death. And I think this movie in particular really addresses it well.

I think it gives death less of a sting. It makes it less of a threat or less scary. Of a topic to think about. If we can think about all of the options, all the ways that we can deal with the pain or not deal with the pain. Um, with my dad having passed away just a few days ago, I really faced this myself, um, in terms of just being really insistent that he not be given measures to prolong his life. He was already psychologically suffering from dementia. And it was really important to us as a family not to prolong that suffering. And yet in the moment you always feel a little bit strange telling a doctor that the doctor we were dealing with was really great at supporting us through that decision and not making it awkward, but it's really good to practice. I got to practice with my mom and now I've gotten to practice with my dad, and that makes me more ready to be able to make those kinds of decisions, awkward as they are, socially hard as they are, for myself at some point. If you're interested in those topics, if it's not too scary for you, if you're in a good space, not too stressed out by the political situation right now, then you might check out that movie on Netflix just as an educational opportunity.

I just love Julianne Moore. She really takes on roles that explore these bold subjects a lot, so I appreciate her work in that respect.

So I will probably be away for a couple of weeks dealing with my family business. And if you'd like to be in touch with me, I am on Substack. That's the best way to hear from me every week. And, my substack is called abreastcancerdiary.substack.com. You can either subscribe through email or if you get the app, you can subscribe on the app and then check it out on the app and not get an email, and I will talk to you soon. Take care friends.

My guest Heather has been thriving with metastatic breast cancer for nearly 27 years! How did she do it? She feels that it's a combination of things--not necessarily the trial on stem cell therapy combined with high-dose chemo. She feels that her long-term drug, Faslodex, as well as lifestyle choices around nutrition, exercise and mindset are key in her success.

Heather's web site is: https://heatherjose.com/
and her podcast is on YouTube at: https://www.youtube.com/@ImStillHereCancer/videos

Kathleen does zoom based peer navigation/mentoring sessions now. Schedule a session here for a sliding scale of $35 to $95 per hour long session: https://kathleenmoss.simplybook.me/

Transcript:

Today's podcast guest is Heather Jose. She's from Mount Pleasant, Michigan, and she's an occupational therapist, and the most remarkable thing to know about her is that she's a 26 year post metastatic breast cancer survivor and thriver. And that's a main reason why I have her on the podcast today.

I've never met anyone that has lived that long and thrived that long after a metastatic diagnosis. I'm so excited to have you, Heather.

H:

Thank you. It's great to be here.

K:

Thanks for coming on. So a huge part of your story is, well, you're, you're a podcaster too, and you tell your story in an informal YouTube and podcast setting. Uh, there in your home with your husband usually, and sometimes your kids are, are joining to tell their part of your story. Um, so people can learn about your entire journey just by looking at back episodes of your podcast.

But. I wanna hear what you feel you did differently than maybe some of the people you meet who have had metastatic breast cancer and how your path was maybe a little bit different than the conventional path after being diagnosed. Oh. Start out by telling us if you had an early diagnosis before your metastatic diagnosis.

H:

No, I was diagnosed de novo, so stage four from the start. Um. I think, and I, looking back, I was 26 when it happened, and I think some of what worked for me was being a little bit naive about a lot of things, right? I look at, my daughter is now 27 and doing great at life, but you know, there's a lot that you learn over the course of time, right?

So I think it helped me to be able to just kind of go into this going, well, okay, how do I, how do I stay here? How do I figure this out without knowing, I don't know, even the gravity of all of it.

K:

Sure. Absolutely. And did you, how many months or years did you stay with just conventional treatment before branching out into integrative treatment?

H:

Well, the, my first doctor told me to get my affairs in order, I stayed with him for about 20 minutes and we were done forever. The, the next oncologist that I talked to was the next day. She told me even on that phone call, "drink some green tea, eat some fruits and vegetables and we'll start killing cancer on Monday." And it was so empowering, like, SO empowering. Here's a oncologist from the University of Michigan who you know, is renowned in her field and, and, she's telling me like, go get some green tea and it was the best thing ever for me. And that of course kind of was like, okay, what can I do? so right from there we started to do some research.

And when I say we, I should say my mom, because I knew early on that I could not handle all the information coming in. I knew that it, I just needed to kind of protect my mind and kinda keep myself in a bubble. So she started doing, some exploration of, you know, what else is available that could help kind of bring pieces, of knowledge to the table. Because even at that time, and I, I know nutrition's tricky anyway, and I know you've talked about some of this, right? But you'll, somebody will tell you "a calorie is a calorie" and somebody else will say, "no, you have to do this." And we wanted somebody who was like, no, what we would like you to do is this, and the reason why is because the research has shown the way to go. So we actually found, um, an integrative oncologist early on. I, I was seeing him, I was diagnosed in December and I went to see him in February.

K:

And this is Dr. Block.

H:

This is Dr. Keith Block. So, yeah, and he's, um, he's in Skokie, Illinois now. He was in Evanston at the time, but they're just neighboring towns. And, um, it was so, it felt so good to me to be there, to have them kind of say, yeah, we'll, we'll help you kind of put together a plan, but also the reason why we're doing this is we're gonna look at these labs, or we know what this study says. All of that kind of information was great. I felt like I could just, you know, really rely on them.

K:

So when you went to see Dr. Block, did you leave the green tea oncologist behind or did you continue to work with her?

H:

No. She's still my oncologist. I mean, and, and I went to Dr. Block saying, Hey, I've got this great oncologist and what do you think of this plan? And he said, I think that's a great plan. And here's what, you know, we can add to it. So it was kind of nice to have kind of a second opinion all the way through, um, the first, the early years, and then also have this nutritionist and, and different people on board.

K:

Okay, so Dr. Block worked in collaboration with your oncologist. Would you say that?

H:

I would say Dr. Block, um, helped me put together the other pieces of the puzzle that I was really interested in, in terms of nutrition, supplements, he was talking about visualization, encouraging exercise, which my regular oncologist was also doing. It felt really good to have this kind of, not that they were talking a whole lot, but to have both of these people that I really trusted telling me, yeah. "Do these things."

K:

And they actually agreed about what these "these things" were? Wow. That's great.

H:

Yeah. My oncologist has always been, um, I think ahead of her time you know, in terms of recognizing what our bodies can do with proper nutrition, exercise, all of those kind of things.

K:

Okay. I was gonna ask you if you ever went back to her now, you know, 20 some years later and said, why the heck did you tell me to go and eat green tea? But it sounds like she has continued to be consistent in her endorsement of things like green tea and fruits and vegetables.

H:

Absolutely, it's been a while, but we ran a 10 K together once. She's very supportive of being active and healthy and she will always. Um, check in on all of those kind of things. What am I doing to work out? How am I eating all of that?

K:

Okay. Now the $10 million question, do you feel like your lifestyle choices in terms of working out and eating right, have made, and does your intuition tell you that those things have made a difference in your longevity?

H:

I think absolutely. I think part of it is that you're trying to build what. least at the beginning, I was trying to build the healthiest body possible so the treatments could be as effective as possible,

I wanted to kind of eliminate any of the extra work that my body was maybe having to do, you know, and, and give it really great fuel. That was my whole, know, process in that was how can I make my body as efficient and effective as possible?

K:

Okay, so you're saying you wanted your body to be in good shape so that the treatments could be effective, so you weren't replacing the treatments with lifestyle. I think that's a really important distinction.

H:

God, no. Absolutely not. Not at all. And there's this other big piece, which is mindset. So for me, I was kind of like, I need to believe in everything that I'm doing, and being able to believe in these things then helps me kind of put together this whole picture. The medicine's working and it's doing its job, and I am doing my job by, you know, keeping myself as healthy as I can be.

I mean, it's, it's a whole picture.

K:

Yeah, so Dr. Block is a, a medical doctor and he's an integrative. He has an integrative center, I think. So let me just clear clarify for the listeners who don't understand the difference between integrative and alternative, I. Because there's this really crazy amazing, um, series on Netflix right now that just came out called Apple Cider Vinegar.

That is, I think, not defining these things very well. And it really strikes terror into some patients when they don't have definitions. So alternative therapy, uh, natural therapies can be offered instead of conventional medical treatment. And that's, that's what we call alternative, but integrative means it's a natural approach or a lifestyle approach that works hand in hand with conventional medical therapies, and that's what, obviously that's what you've chosen and what Dr. Block has chosen. He's not saying "you don't need chemo radiation, you don't need those oncology drugs or the hormone, suppressors."

He's saying, do all of that and let's do what we can to get your body into the best shape it's ever been in so that your body is resilient. Against the negative effects of those treatment, but also receptive to the positive effects of those treatments. Okay.

H:

Perfectly said.

K:

Okay, cool. 'cause I want Dr. Block to not fall into that camp that is being, you know, criminalized--rightfully so. I think! ...by, by this, this new wave of, of truth telling in cancer where, you know, the, the Hirsch therapies in the movie, apple cider vinegar down in Mexico is, is really the Gersen plan or the Gersen therapy. And that really is an alternative. They use enemas and juicing instead of chemo and radiation

Typically, I don't know what they're doing now, but typically, um, that's what they've been seen to do. And a lot of other podcasts that I've listened to that are based on health and nutrition and lifestyle will actually give. Those therapies, some airtime and some credence, and that can be really confusing for patients.

So I just want patients to know that. I would not be inviting a guest on my podcast that would endorse that kind of, um, miracle Cure kind of thinking. And, and Heather is the crystallized, you know, perfect guest to endorse the. What we call integrative, which most cancer centers across the country right now are embracing integrative therapies. Things like, you know, those complimentary therapies like acupuncture and massage and nutrition and activity, physical activity.

So cool that you can tell that story well and tell such a successful story. Um, while, while telling that, but tell us about what kind of traditional or conventional treatments you did take part in.

I know you did a clinical trial, uh, maybe you could tell us a little bit about that?

H:

Yeah, so again, I was diagnosed in 1998, so this is, and things have changed a lot during that time and I think it's important to state that because sometimes people come to me and they want, they latch onto one part of my treatment. Treatment as if it was the thing that was everything for me. And I don't really, I don't believe that that's the case, but I started with four rounds of chemotherapy. Um, I. had a five cm tumor. Um, by the end of that treatment, my tumor was undetectable, but we still had a lot of things going on. And the next thing was that I, um, I did a double stem cell transplant. So a double stem cell transplant was a clinical trial. this is something that people will sometimes say, how do I get that? How do I get that? my answer to that is that what was. Proven through the research is that there are better ways to address cancer than a stem cell transplant. Like this is high dose chemotherapy, that not everybody comes through .

They take you down to kind of zero, and then hope that your trans, your stem cells will regenerate and give you back what you need. Um. It's just, it, it was found that it wasn't the most effective way to go. And right on the heels of all that was targeted therapy and all of these things, these drugs that are so much more effective and also, uh, less dangerous in terms of side effects.

So. Um, after the stem cell, I did a double mastectomy, and after the double mastectomy I did radiation, which was kind of my, my year of treatment. And then from there, went on to start, drugs, like I started on tamoxifen, and it was also on a bone strengthener because of the bone mets.

K:

Sure. Now, just to clarify your clinical trial, it sounds to me like from what you're saying you were given stem cell therapy in cooperation with high dose chemotherapy and in the thought that the stem cell therapy would help your body to be more, um, your body would recover better from the trauma of high dose chemotherapy.

H:

They use them because. In traditional chemotherapy, they're, you know, they're constantly monitoring, you know, what those, those levels are. And with, without, um, the stem cell, they, the thought was they could bring all of the levels down even farther and maybe kill more or any lurking cancer cells

K:

And they did that through a more intensive chemo regimen or through some other, okay, gotcha. Okay. So you endured more chemotherapy than the average patient did at that time, and probably today as well. And the way that you recovered from that was the stem cell treatment. Gotcha. Okay.

H:

I mean, the stem cells are necessary for you to be able to then come back to life. Yeah.

K:

I think most people listening to your podcast and to your story will then say, gimme some stem cell treatment please. So how do you respond to that?

H:

I just, I enduring, it was really hard. I mean, I never, I, the closest I came to death was during that time. Also the cancer was undetectable before we started it. Right. And I've been stable on a medicine that is easy for me to endure since 2004 Is it that the one piece? I just don't believe that you know.

K:

Okay. What's the one medicine you've been on all this time?

H:

Faslodex, which is also called fulvestrant. Yep.

K:

Tell us about that one and, and how you feel while you're on it.

H:

Yeah, so I started on that in 2004. We kind of did Tamoxifen for a couple years, had a slight, you know, change in the bones. I've never had anything, big happen. But, , so Tamoxifen went to Arimidex for a couple of years, and then same type of situation. My doctor said, Hey, there's this new drug, it's called, you know Faslodex, I'd like to try it. And I was like, okay, it's. Um, at the time it was one injection, um, and just into your hips, and I tolerated it super well. Um. Because I started it so early, later, once it went through all of the testing became a, a double dose of that. And I've been on it so long, we're now back to a single dose. Kind of like, what, you know, we've talked about, because I've been stable for 21 years now, or 22 years now. It's been, it is the question of, you know, what. What do we, how do we continue this journey? the medicine necessary? Um, you know, what does that look like? So, um, the, the problem with the faslodex for me, after so many years of injections is, uh, some scar tissue in my hip or my lower back area, to be able to do one injection versus two just really helps me from a comfort level, um, you know, endure that. And I felt very comfortable with that because I was on one dose a long time ago.

K:

And what other side effects have there been any other immediate side effects?

H:

I am not a big side effect person.

I'll be honest, I don't really, I even from the very start of things, I've always kind of said, "if there's side effects you need to, like, please tell my husband or my mom or something so I can kind of like bounce things off of them if I'm feeling something." But I know how my brain works and I don't wanna manifest things you know, I don't need to.

K:

Oh, okay. So you're saying you never looked into the side effects and therefore you never experienced them. Is that what you're saying?

H:

That's why I'm saying is, I mean I learn about side effects sometimes because they happen, talk about from a bone standpoint, the Biphosphonate I was on, there's also things that, like with a Faslodex, it's super easy for me to tolerate. I'm sure there are some side effects that. People talk about, but for me it's in and out. I actually got my treatment today. Um, there's no, just, easy and I appreciate that,

K:

Yeah. Yeah, it's a very different drug. So did you get onto Faslodex because of a clinical trial initially?

H:

It wasn't actually a clinical trial, but it, it just come out like, so they were still working on dosing at that. So, yeah.

K:

So it sounds like you, you're giving it five stars in terms of the treatment.

H:

I mean, anybody who can walk in and out of a cancer center you know, maximum 10 minutes, that's, I think that's five stars, so, I mean, you know, maybe I turn on my heated seats on the way home. Like, okay, that's, that's good. Drink some extra water. I mean, okay.

K:

Brilliant. No, I love it. So why did you stop taking Tamoxifen?

H:

Uh, because there was a little bit of a change, so we just moved from like a, a change in the bone--a little bit of progression. has always been like, we're moving to the next thing,

K:

Oh, you mean there was a cancer progression in your bones? Is that what you're saying? Okay. So it wasn't responding to Tamoxifen. Okay.

H:

Yeah. I mean, we can talk about all that too, because over the years I've now learned to do, to do bone biopsies.

And I've had two bone biopsies that have come back clear. So it's hard with bone changes to definitely say this is, um, you know, the cancer.

Right.

So especially when it's in little things. Again, I'm not an expert on reading scans by any means...

K:

Yeah. No, that's good. I think that just an overview is good. I, I don't wanna get into too much medical stuff 'cause we're, I'm not a medical person, so I can't defend and define those things. Um, but I do wanna ask you about the double mastectomy because most, almost all patients who are diagnosed de novo, like were, do not get a double mastectomy, even if they want one. So what happened in your case that made that different?

H:

Well, that is, I would consider that a new way of thinking. So that was not the protocol in the late nineties. That has changed since then. And I, I think there's a lot of, um, I understand why women sometimes are scared because they don't have a double mastectomy, but I also feel like being able to keep your breast is really, um, invasive a great thing.

K:

Yeah, so you, it sounds like maybe miss your breasts and, and feel a little bit of regret about that.

H:

Yeah. I mean, I can't, I can't regret something that I didn't have the opportunity to make a decision on. Right. But I didn't realize the impact it would have on me, the loss of my breast in terms of, I. image, uh, sexual pleasure. All of these things were, there's a big piece of me that is missing. of course my first priority is to be here.

But I think by just, you know, have, when we have these, double mastectomies and you know, do reconstruction, it's not like they're the same. They're different.

K:

Do you wanna talk a little bit more about that? How is, how is it different? I know you went a few years without breasts, so you were flat for three years.

H:

Yeah, and I'll talk about that too, like, so when we did my double mastectomy at the time. I was offered reconstruction and my whole thing was like, no, uh, I know it's, I mean, I thought, at least at that time, I was like, this is a procedure that can be quite painful. There's a lot of pieces to it. And so my only thing, I just wanted to be healthy as soon as possible. And I was like, I don't mind being flat. That's, that was fine with me, and honestly. was fine with it. One of the reasons that I chose to have, uh, reconstruction was because. It can, and it can be very painful to have just kind of your sternum exposed.

I had young children at the time and like that head coming back into a couple times, sent me skyrocketing. And so I was like, I am willing to look into this. And I was also a couple of years out and feeling really good. I felt feeling strong enough to be able to take it on.

'cause I knew it was a big and it, it was a big procedure, so...

K:

So what were some of the ways that it was a big, a big deal?

H:

The LAT flap. So muscle from the back come, come around to the front on the left side and then just expansion on the right.

Um. It just, it was painful and I think the results were okay. When you look down and I have a shirt on, it looks like I have breasts, but nothing more. I mean, I had said to my husband a long time ago, like, please just don't even, don't pretend to like them. Don't pretend like it just doesn't. That's that part of my body is gone. is a different or something.

K:

Were you more comfortable with the flatness being touched or?

H:

No, I didn't feel like I, again, I don't know if I gave that enough time over now that it'd be many, many, many years. I think it always felt very tender to me. Um, but um, yeah, I. I was just surprised by all of that. And also there's no talk about it, right? When we're, when those things are happening, it's all very much like, "oh, but we can do a reconstruction and you'll look just like this and you can choose what size you wanna be."

K:

And it's all like, a positive thing.

H:

And it, but it, there's no talk about the fact that, you know, it won't feel the same and your body won't interpret it the same. So.

K:

So you have 23 years. Did you get, so you got a lat flap you said on one side, and then did you get an implant on the other side?

H:

I have implants on both, on both sides--the LAT, the pocket on the left side with a LAT Flap.

K:

Oh, okay. So have you in all of your years, had a replacement of the implants?

H:

I did. I had 'em replaced a couple of years ago.

K:

Oh, good. Okay. And had they broken down at all in in that long time? No. They haven't.

K:

So you made it 20 years without them breaking down, it sounds like.

H:

Yeah. And the the side without the lat flap had kind of fallen a little bit. Like it was just a little bit lower. Um, but it was still fine. I do have saline implants also. I didn't do silicone, same as the new ones or the first time around.

K:

Oh, okay. Okay. So saline maybe are longer lasting than silicone.

H:

I don't know it so many things, you know, things come and go, but there was talk, a lot of talk about silicone implants at the time that I first did the surgery, and I want to be even having to consider whether or not it was safe or whatever. And so I did saline.

K:

All right. And then you said the younger children, I mean, sounds like you're still pretty protective of your, your breast, your chest area after getting reconstruction. But did it change your relationship with your kids or did that, did that have the desired effect?

H:

Um, I dunno if I've ever really thought about that. I think it's, I. The reconstruction had the desired effect of, I, yeah, I don't know in terms of, it made me able to do the things I wanted to do, I guess, and not have to consider necessarily. I. Clothing choices in the same way. There is some of that too, and again, I feel so old saying this, but like, you know, clothing changes and at times it's more fitted and at times it's not. And, it might've been all of those things, but...

K:

Well, and you were 26 when this first happened to you, and now you know, you and I are the same age, and I, I mean, looking at your story, from my perspective, I've just now given up my breasts after having them for, you know. 40 years or whatever, and you were just getting into the place where, as a woman, we become comfortable in our bodies for the first time.

H:

I didn't, and again, I just didn't even understand that, like the pleasure that I did get from them in a sexual encounter or any of that kinda stuff. I didn't, I, of that was talked about. You know, wouldn't have changed, uh, the protocol at the time. I, I do understand. Or I, I am, I guess in some ways glad that there is some preservation of breast. I just don't think that it's very easy for women to recognize why, you know what I mean? I also understand the, initial urge of get 'em, get it out, get it out, you know, kind of

K:

So it sounds like you're supportive of our current standard of care, which says women need to keep their breasts if they're de novo.

H:

Well, I think I recognize. Uh, probably where some of that came from. I also, in speaking for women who are stage four, do want them to feel like they have access to the highest level of care so hoping and assuming that the research has been done that really, by preserving breasts, it's not changing outcomes.

K:

Yeah. Yeah, it seems a little bit illogical. I was talking to Leslie, another podcast, uh, guest about this who's, who's lived quite a few years also past metastatic diagnosis, and it does make sense to me that you would think that the scans were less. Likely to catch something if you have all this breast tissue, especially if it's dense breast tissue.

Um, but I guess the thinking is that you're gonna catch it if it's systemic, you're gonna catch it growing in multiple places on the scans, even if you didn't catch it in the breast. Um, there, there are other ways to catch it in other places, but yeah, it does seem like you're kind of living with the enemy still when you have the breasts still.

H:

that's a great way to put it. Yeah.

K:

And you were married when you were first diagnosed? Yeah.

H:

I mean, again, some of that is like, thank God for like getting married young and you know, we talk about, my daughter was 14 months old when we, when I was diagnosed and like, she's 27 now. So, and I just, you know, we kind of. Looked at each other one day and said, oh, I guess, I guess we could have kids and we got pregnant, and I wouldn't have her without that.

You know what I mean? It's one of those things that you just go, I guess thank God for again, just kind of not really always thinking things completely through.

K:

So did, were you aware of when you became infertile? Like was it really clear to you because of the chemotherapy that you lost your fertility?

H:

Um, well I had a two sentence, maybe three sentence conversation with my oncologist, which was, um. My mom was in the room with me and my doctor asked were, um, you, you know, she's like, I know you have a daughter. Were you planning to have more kids? And I just kinda looked at her and my mom kind her finished and said, you were planning to have more kids?

And I said, yeah. And she goes, that won't happen.

K:

Did she explain why?

H:

Because of the chemotherapy, they were doing. Yeah. And I never had another period after. I mean that, so I've been, that's now being 26 years out. I mean, it's really for me, I've been in menopause for 26 years. I'm 52

Yep.

and there's so much talk. About menopause right now and HRT and all these things that are great and things that I'm fine with, but I'm like, what about for those of us who don't have access? Like I, the thing I'm wondering at this point is how do I preserve my body that has been in menopause for 26 years? That usually, you know, is how many years of a woman's life that they're in menopause. Like, I need to double that. So what are the, you know. Answers for me and what should I be focused on in terms of menopause? So.

K:

Have you come up with anything?

H:

No, I, not really. I mean, of course just general health and lifting and, you know know those basic things, but I would, I actually have been kind of thinking about, I need to some research about finding, maybe finding a doctor who will speak to menopause, um, in, you know, women you know, that have had cancer because, um, while I'm excited to. Find out and hear that the HRT trials were completely botched and whatever ago, and that HRT is something that is accessible for women and maybe a great thing, it's not accessible for me. Right. And for for many people. So like, what are the other answers?

And you know, I think because we're, we can't replace estrogen and progesterone, we can't do that. So like. How do, how do we our body going?

K:

Yeah, I know a lot of breast cancer survivors are taking vaginal estrogen because there's a, a bunch of research that proves that it doesn't go into the whole system. It doesn't act system systemically. Um. But yeah, otherwise we're not allowed to take HRT.

Hopefully we'll get more workarounds besides just the vaginal application.

Yeah, and I've used some of those in the past too, and it's not been a struggle for me, um, recently, you know, but yeah, the access is just not same.

K:

Yeah. You're pretty open about your marriage and your family and your podcast, so I feel a little bit more free to ask you about that. So, um, when your, your husband learned about the infertility and chemo link, did you have a time of grieving? Did you, were you, were you able to process that together back then, or more recently?

H:

I think it, early on it was really just survival. Like we didn't have time to process it. I think it's, it's weird how it shows up for me. Um, definitely have grieved. Uh, not having, um, not being able to have more children biologically. And it comes out in weird ways. Um, in fact, even just probably less than a month ago, I was in a work situation with colleagues that I really liked, all women that were talking about how many children they had and they planned to have and da, da da, da da. And it was just that, that talk that. bothered me when I was in my twenties and even now, to hear people talk about pregnancy as if it's completely always gonna happen and go perfectly well, uh, is really hard for me. And I actually walked out of this conversation, I said, and these are the conversations I leave, and I left. they were like, oh, I'm so sorry. And I was like, no, you're, you are welcome to have those conversations. But that's just. Again, living took priority over everything. And there, there were losses, right? There's

K:

Yeah. Yeah. There's piles of losses right then in that beginning session. Right. Like too much to process, I imagine.

Yeah. And you had an adoptive child before you were diagnosed.

H:

No, afterwards.

K:

Oh, after, so I thought you had said you had kids. Okay. So Right. Was it really soon after. Okay. Soon after.

K:

Okay. So when you were talking about your sternum and that being sensitive, it was because you had adopted him pretty quickly.

H:

He came home, he was 18 months old when he came home, but we did, he came home in 2002 and I was diagnosed the end of 1998, so yes.

K:

Okay, so did your adoption process go pretty smoothly?

H:

Um, I would say yes. Um, I don't know much about adoption and how it's changed over the years. Um, I, I had kind of, I found something that was, I was able to apply to a bunch of agencies and say, would you work with somebody in my situation? And I had an agency reach back out to me and say Yes. and from that. Side of things. It went great. Um, international adoption, I think there's always challenges and like our process literally took 18 months and nine 11 happened in the middle of it. You never know, know, what's gonna come about, you know, we're, it's been an amazing thing, the whole, the whole process.

K:

Right, of course. So you did an international adoption, it sounds like, and then what was the questioning like about the fact that you had a metastatic diagnosis? Like, did people really know what that meant, do you think?

H:

I don't think so. I mean, I'll be honest, I think, um, we got letters from a couple of doctors that said that I was stable at the time and, you know, um, definitely that my husband was very healthy and that type of situation. And I, I think I. It? Yes. People's. Um, I, it might be different now. I think metastatic breast cancer is a little more understood now than it was then.

K:

Yeah, I think it's pretty much assumed that a young woman who's gone through even non-metastatic cancer and has become infertile is a little bit of a risky bet you know, in terms of, of adoption. So it's remarkable that your story is here for us. Like, I think that it tells us that women should try, I mean, it's heartbreaking to try and fail, but it's, it's still possible perhaps, especially if you're married.

other thing is like, you know, life is risky also. I get it. That, you know, the diagnosis. Is something that you can just brush off. when I think about, um, wanting to build homes, they're, you know, and, and have children. It's for a lot of reasons. And, and I always, like, I always fall back on the fact that without me, my husband is a really good dad. And that's, and that's important.

K:

Yeah. I love to see you and your husband on the screen, and it's like every single episode you have, it's like he's never not there. And I'm always blown away by that. There are a few instances where I've seen other breast cancer advocates in this community, and their husband is always with them, but it that is pretty rare.

And he's not like an effeminate guy. He's a pretty guy's guy. Like he's a, he's a very masculine man.

H:

Well, it's funny too that you say that because like he is, he's so supportive of me, but we're also very supportive of each other's things, right? So like, yeah. It's not like we're together 24/7 by any means, and you know, he's, yeah, he's all of those things. A coach, a football official, a all, all of that.

K:

He's by your side while you're telling this horrendous to, to most men, it would be a heartbreaking story to be there next to, and listening to, and certainly to my husband, who is also a very, you know, masculine man. Um, they don't like to relive it a lot of times, and so I'm just so impressed with him, and yet I can see a little bit of, you know, the tender, tender side of him when he's talking to you about these things.

He's a very gentle guy too, so. Yeah. So do, do you and he talk to people outside of your living room? Like I know you're, you're kind of in your little cloistered space when you're doing the podcast, but do you do speaking gigs together and does he travel with you when you speak?

H:

No, I usually speak on my own. Sometimes, we'll, I mean, we'll take any opportunity to speak together about our situation. That's not a, not that. We aren't willing to do that. It's just the most part when I'm speaking, it's generally on my own. Um, he can come with me, great. I actually have also gotten involved with Little Pink Houses of Hope, which is a organization that provides, vacations for women with breast cancer or people with breast cancer. Um, and when I go and I see the dads or the partners in these situations, I always think, oh, I wish he was here. And, and that's the goal too, is that he will at some point be able to kind of join me because I think the, you know, the partner support is, there's a whole nother, set of things you have to deal with there, right. It's, it is important to talk about.

K:

I wanted to ask you about your daughter as well. So you have a biological daughter, Sydney, and she is certainly, you know, at significant risk for breast cancer. And, um, I wanted to to have you tell a little bit of her story if you're willing to.

H:

I will say like. So Sydney has lived her almost her entire life with, with cancer, and we've, it's always been a part of who we are as a family. It's never been something that she's been, particularly scared about or, anything like that. It's, it's just been a part of our lives. she. and I, I should say too, I did, I have done genetic testing a couple of times.

I don't carry any markers for any, which is a little reassuring as a parent, I guess. Right. You hope that, you know, a, it's a fluke of how I have it, but it doesn't necessarily mean that she will get it. That being said, she's been in a high risk clinic since she was 18, which is they, they do have them, um. There. I don't know how many places have them, but we live in Michigan. She's been a part of the University of Michigan's clinic. and it provides a whole lot of reassurance for both of us, just that she has been getting these baseline, not just mammograms, but breast MRIs, you know, since, so for nine years now.

K:

How often does she get MRIs?

H:

I believe once a year. Uh, you know, she's a typical 20-year-old where she's moved to Chicago and come back. So, um, I don't know that they've all happened in that amount of time.

K:

Okay. So because you were diagnosed so young and because you had such a severe case of breast cancer, she qualifies for intensive screening, is that something they would've given her a choice to opt out of or were they really pushing her to do that intense of a, of a plan?

H:

Well, I think they started out, they did do ultrasounds. She's always, there's always been like, no, we need to look at that another time. So kind of along, I've had a situation like that too, where it's the lower level and go to what we need to be at.

K:

Okay. So she also has some, has some characteristics that make it murky a little bit. So she does, it is justified to do the MRI every year then. Okay, that makes sense.

I've just realized I've forgotten to ask you a really important part of your story with the Block Center. Um, personally, this last December, I had a scare and it was looking like I had a lymph node that was, it was highly suspicious and turned out to be nothing.

But I was already making a plan for if I had, you know, lymph node involvement. My plan, after looking at every possible scenario was to go to the block center. Um, I was very impressed with what they were doing. And I also really love my medical oncologist here in Oregon, but, uh, I had a plan to make it work and I wasn't quite sure of the financial implications of that.

So I wanted to ask you what were, and I know it's been 20 some years, but what were the financial implications for you?

H:

Yeah, I mean, I had pretty good insurance. My insurance covered almost everything. Um, there were some blood tests that we would do that are a little more, uh, things, you know, where we're looking at different levels of lycopene and different things like that we would pay for. And then my supplements, I, we also paid for, so like Vitamins that they, um,

K:

So not a lot of money. Not, not hundreds and hundreds or even thousands of dollars of investment. It was really insurance even 20 years ago, insurance paid for it. So all the more so now I would think.

That's really encouraging to me. Um, Dr. Block, not only. He, he not only kind of stresses the importance of doing lifestyle modification during your active treatment, but he also follows up after and does a lot of follow up work, which no one in the world that I'm aware of does.

Maybe somewhere in Europe they do, but I've never heard of a follow-up program to prevent recurrence the way that he offers his patients. Did you, I mean, obviously. Metastatic is very different than recurrence prevention, but did you have any, um, follow up long term like that, that you wanna talk about or describe that? Was it good for you?

H:

I just incorporated a lot of things from the beginning and I have kept with a lot of them. So, of course you kind of make tweaks along the way. Nutrition's changed a little bit, you know, but, um, some things have gotten easier. Some things are just the way we do them now. It's, you know, so, um, I, for me, it wasn't. When people would talk about, you know, kind of being done with my initial treatment and like, you can get back to life. And I was like, no, why would I go back to what led me to cancer. Like, I'm not going back. I, I'm creating from here.

K:

Yeah, it's tricky. It's so tricky. 'cause you know, we believe still that cancer starts with a carcinogen that comes from our environment. Something we can't help and that our weakness to cancer has something to do with our immune system, right. And levels of inflammation. But yeah, diet and lifestyle can really affect.

The levels of inflammation and our resilience in terms of turning off the epigenetic switches. Like if, if we're genetically prone, which I think anyone that's had cancer, we, there's probably some gene somewhere that we haven't discovered yet that we are weakened by the, the mutation for. But yeah, the lifestyle stuff is not, it's not a sure thing, but it, the likelihood is we're turning off those weaknesses by strengthening our lifestyle. It's peace of mind, right?

H:

It's "I am doing something. That's a huge component of this to me, and that's what led me even in the very beginning was, okay, I go for treatment once every three weeks. What am I doing? The other, you know, 18 days? Like need to be involved, to be feeling like I doing something to, you know, make myself stronger mentally, physically, all of those things.

K:

Oh, that's such a good point. I was gonna say in the beginning when you described your oncologist saying to drink some green tea and eat fruits and vegetables, I was assuming when she said that to you that she was a believer in the placebo effect. Go and do something positive for yourself, whether or not those things are really making a difference.

Because a lot of doctors are learning that psychology of cancer is such that you need to give someone a placebo. You need to give them. Something so that they feel empowered and it's, it's been shown in research that placebo works. You know, something that may not even be actually doing physical, biological good can do you good. Just because of the psychological nature of, and the power of it.

H:

Absolutely. And also not believing, like I was not somebody who was asking. I did get some statistics early on because they thought I'd be an earlier stage, and I remember as soon as I found out I was stage four, I was like, oh no, I was in those. Terrible statistics, you know?What turned things around for me with that was my brother, who's a doctor, who said, listen, nobody can determine what side of the statistics you'll end up on. Like, they're a probability. They are not a for sure. And that changed everything for me, you know, to be able to go, okay, even with this, there's nobody can decide. It was huge for me.

K:

Yeah. And I know that a lot of metastatic patients come to you desperately wanting to know the exact formula of supplements and foods, and I'm so glad that you hold that lightly, that you're not passing it to them with a stressed out kind of Yes. You need to do exactly this formula. No, it's not about that.

So, and, and that's why I was willing to have you on because I, I really actually protect the, um, the podcast from folks who are. Nutritionism, you know, kind of patients because I don't want any of that to be over-stressed, um, as much as I do believe in it.

H:

I, I will say that to people often, like, you can, I can tell you some changes to make but if you don't believe or want to, if it's only gonna add more stress, you know, like that's not the point of this. The point is to build good habits that actually have good effects, not add more to your plate, and every woman needs that.

K:

Yeah, and I think that's kind of my definition of nutritionism is nutritionism is taking nutrition and adding fear. You don't want fear in that recipe because the fear will outdo all of the good that the nutrition does. So because of that, I am able to very joyfully endorse your offering. You have a free offering to your listeners that's called The Five to Thrive Program or guides. Tell us a little bit about that.

H:

Yeah, so I've created multiple "Five to Thrive" Guides and they are just meant to help people kind of create a plan to live with cancer, and they're just. little tips and tools based on mindset, fitness, nutrition, medical, and social components, kind of the areas that we really realized that I focused on the most and still continue to focus on. My hope is just always to give people hope and some tools that they can then build a plan that works for them. Right. The goal is always to live with cancer and, um, there's no one way to do it. I know that, but I firmly believe that helping people find some areas to focus on. It's kind of like, here's the green tea that my doctor gave me--areas that you can really impact, um, how you're living, um, in a, you know, big and small ways.

K:

Yeah. And I'm so glad that you, unlike other influencers, you're not outlawing meat or outlawing dairy, you know, you're saying, you know, it's, it's a real gray area. It's, you know, those things. And that's totally my philosophy too, is those things can be good or they can be really, really dirty depending on where you're getting them. Thank you for being clear about that. That's so important. So how do people find your, your website?

H:

Yeah, I'm, my website is heatherjose.com and, um, my products are on there. My eBooks are there. Um, and you can also find the podcast is called, "I'm Still Here... Life with Metastatic Breast Cancer."

K:

So you do like a weekly episode?

H:

We were doing two a week, and then I was like, this is crazy.

K:

Yeah. That is crazy. I agree. Okay. And Heather Jose is spelled the traditional way of Heather, and then Jose is like Jose, uh, JOSE. All right. And I will link to those resources below. Heather, I'm so grateful for your generosity with our community, just your openness and the time that you have spent to share your story week after week, and your husband too, and you know your whole family.

I'm so grateful for that. It is such a bright and promising and hopeful story that I want everyone to hear, so thank you for coming and sharing it here.

H:

Thank you. I, I really appreciate, um, having the opportunity and I would love to, if you want to at some point come and join on our podcast as well and we can talk a little bit more about Nutritionism.

K:

Oh, awesome. I would love to. That would be great.

H:

Yeah, people often, they do want a guideline, but I want a guideline that that is, based in truth,

K:

It's tricky. It's real tricky cause we're continually learning always. We're always learning and perfecting in nutrition, so...

H:

Yes.

K:

So good to get to know you. Thank you.

H:

Thank you.

Today I'm reflecting on the science related to last week's episode talking to Christina Miner about her Capsular Contracture and Breast Implant Rupture. Lot's of good resources linked below about this....

Links:

Another great podcast episode on the history of implant mis-regulation is here.

The checklist I mentioned is here: https://www.center4research.org/wp-content/uploads/2019/07/Black-Box-and-Checklist-Consent-Form-PDF.pdf

A report on Breast Implant Illness is here: https://www.center4research.org/wp-content/uploads/2021/01/Breast-Implant-Illnesses-Whats-the-Evidence.pdf

The website I mentioned for implant-associated lymphoma is here: https://justcallmeray.org/

And a short interview about Squamous Cell Cancer and implants: https://podcasts.apple.com/us/podcast/breastcancer-org-podcast/id781242172?i=1000584263441

A great advocacy group that will help you to advocate for better research: https://ourbodiesourselves.org/

Transcript:

Today's another solo episode where I'm reflecting on my last guest conversation with Christina Miner. We talked about capsular contracture in the last episode, and I just want to reflect a little bit more on the meaning of this, the implications of this, the frequency of this, and a little bit about some of the risk factors.

I realize that this is a very controversial and touchy issue. And by talking about these things, I want to remind listeners that I'm not taking a side. I don't have an opinion on whether breast implants are good or bad. I feel like it's still very gray, and it's a very personal decision, very much having to do with your tolerance for risk.

I feel like I made an intentional choice to invite my first guest on, Michaela Raes, to talk about her positive experience with implants because I do feel like I am skewed in that most of my friends in the breast cancer community are flatties and a lot of those friends have explanted it because they have become sick as a result of their breast implants.

But I don't want this podcast to be singularly about the flattie perspective and rah rah flatties. I really want it to be helpful for everyone in the breast cancer community. And I'm doing this episode in particular, not just for the brand new patient that has to decide about whether or not to get implants.

I'm doing this episode to talk about ongoing risks for my friends out there who already have implants. You need to be vigilant. You need to watch those implants over the years. And certainly you need to get them replaced when they're wearing down and breaking down in your body.

It's still the case that most of the people who get breast implants are not breast cancer survivors. About two thirds to three quarters of the folks who get breast implants are just getting augmentation. They are not cancer survivors. And so these things that I'm talking about today, whether it be capsular contracture or breast implant illness or cancer, So I'm going to read the definition from the National Center for Health Research about what capsular contracture is.

Their definition says it's one of the most common complications of breast implants. In fact, it's over 50 percent of the population of those who get breast implants that have some amount of capsular contracture. Capsular contracture is when the scar tissue capsule that forms around the implant hardens.

So it's natural for an implant to have scar tissue around it, but it's not natural or intended for that scar tissue to harden. And in some cases, the hardening of that tissue can be quite painful. And it can distort the shape of the breast, and it can make mammography more painful and less accurate.

Removing the implant and the capsule without replacing the implant is the only recommended way to guarantee that this problem is corrected. According to the National Center for Health Research. Which is a National non profit think tank and lobbying group that tries to help the FDA be more responsible in its use of or approval of medical devices in general.

It's kind of the main aim of that organization.

Now with capsular contracture, you don't always have a problem for the patient. If it's just slight hardening, it may not be something the patient ever notices or is bothered by. Uh, but I, when I go to breast cancer walks and I table for Stand Tall, AFC, to talk to folks about flat closure. A lot of times I will have women walk up to me and talk to me about how unhappy she is with her implants.

And the most common complaint is that they're rock hard. And why didn't they tell me these things were going to be rock hard? I don't like hugging people anymore. I don't like holding my children because I've got these rocks in between me and my children. What they're describing is, I now know is capsular contracture, but because we don't go back to our plastic surgeons and have ongoing conversations with them about how our breasts are feeling and how we're experiencing our breasts, we don't get told that.

And so, you know, you can go on and on and even be in a breast cancer support group and have three or four of the other women in that group say, Oh yeah, mine are really hard too. I guess that's just the way it goes. So when I'm tabling now and I hear that story, I tell women to please go back

to their plastic surgeons and ask for them to advocate for the insurance company to pay for removal of their implants and to get a Goldilocks procedure instead. You can still have a small breast with just the skin that's around your implant. with a Goldilocks procedure and most plastic surgeons are very happy to do that.

Very, very cognizant of the discomfort of capsular contracture and the fact that it's not an intended outcome. It's not something that they want for you.

So with Christina, she had an extreme case of a capsular contracture. Not only did she have lots of hardening, lots of contortion, but that thing was being eaten by her body. It was also an immune reaction. She was having multiple responses to the implant, and she experienced rupture, which is another side effect and possible risk factor in getting implants that we just don't hear about.

Even folks that are given implants, they don't get to read about or talk about the likelihood that they would have a rupture or a leak. And so I want to read the description from the National Center for Health Research about rupture and leak. When a saline implant ruptures, it usually deflates quickly.

But when a silicone gel implant ruptures, you may not notice any changes. And the rupture may not be detected by a doctor or a mammogram or an MRI or ultrasound. And MRI is recommended for silicone implants every 3 years for everyone following surgery. And every 2 years after that to check for a silent rupture.

So it's likely that after 3 or 5 years that your breast implant will rupture. And you may not know it if you have a silicone implant. These MRIs that are recommended for follow up are not usually covered by health insurance, and this is something that people really should have been told really early on.

Um, they are highly recommended to, um, just make sure that your implants are still intact and still the same shape that they should be, but they may not be paid for by your health insurance, which is a really big bummer. And silicone might migrate in to the nearby tissues such as the chest wall, lymph nodes, upper abdominal wall, and into organs such as the liver or lungs where it can't be removed.

And since migrated silicone can cause health problems, it's currently recommended that any ruptured silicone implant should be removed immediately after the rupture. And treatment of these conditions might be at your own expense, not covered by insurance, or the manufacturer's warranty, unfortunately. And when I talk to friends in the breast cancer community that have had their implants, for more than 10 years already. A lot of times they have a really nonchalant attitude about that. Oh, I'm sure it'll last 20 years. I heard somebody say that their aunt's lasted 20 years.

Maybe mine will too. I really discourage them from letting it go that long because the likelihood is that It will break down in your body and you will have some health effects from it.

So another risk of breast implantation is something that we talked about in episode 13 with my friend Anna. She had something called breast implant illness. And this is something that's really hard to quantify or even explain in an objective way since the medical community has still not come together around a definition of it.

It is. very well acknowledged by most medical professionals now as a true condition. So that's good. That's progress over about 10 to 20 years ago when it was kind of denied in the medical community. And the FDA has started to study it, which is great. They started tracking in 2008. the number of complaints that they had about breast implants and the number of complaints that they had specifically with the types of symptoms that come with breast implant illness and they found about a little over 10, 000 reports between the years of 2008 and presently, 2024, that qualify with the the relevant symptoms, which are fatigue and pain, usually mostly joint pain, skin conditions, migraines.

memory loss, and brain fog. Several studies of women with breast implants have shown that they're significantly more likely to be diagnosed with one or more of the following diseases compared to other women. All of these diseases are autoimmune diseases, so they are chronic fatigue syndrome, multiple sclerosis, Sjogren's Syndrome, which my guest in episode 15 had as a result of a drug, um, coincidentally, and systemic sclerosis or scleroderma. There are so many different accounts of how many women get breast implant illness every year and unfortunately there's not a lot of studies on it so there's not a lot of objective data.

I can't really tell you how many women are actually struggling with this. Mostly because, like my friend Anna who was in episode 13, they don't know that they're struggling with something related to breast implants so they can't go to the FDA and complain about their implants. So So many women have lingering symptoms for decades without running into anyone that knows that this set of symptoms actually is a result of your breast implant.

So we need lots more awareness, lots more education. That's why I'm talking about this issue again on this episode. Just to get it out there so that we can talk about it in our breast cancer support groups and in our breast cancer communities.

But the legitimacy of this condition is proven by the fact that removal of the implants resolves the symptoms in so many cases. The FDA said that in seven out of eight cases,

there was a relief of symptoms in the folks that did get get their implants removed. So this shows that it is a legitimate medical issue that does need to be formally acknowledged by the medical community and defined well and taught about when we're giving out breast implants, right? There's another really scary side effect of breast implants that I will not focus on in this episode because I do want to have a guest on to talk about it who has more experience than I do.

But there is a type of cancer that is believed to be associated with breast implants. And originally it was thought to be associated with the textured types of implants only, but it is still kind of being sorted out whether or not it's just that type of implant. And it is called “breast implant associated anaplastic large cell lymphoma.”

And to a smaller degree, there's another type of cancer that is thought to be associated with breast implants called “squamous cell carcinoma.” And I hope to have Raylene Hollrah on as a guest to talk about this. She is the loudest advocate out there. She was, I think, the 30th person in the U. S. to be diagnosed associated anaplastic large cell lymphoma diagnosis after implantation. She has a website called Just Call Me Ray, and it's ray, spelled R A Y, dot org, and that's where she tells her story of having been diagnosed with a second cancer because of her implants. Uh, like I said, I'll hope to have her on to talk about that sometime.

And I won't go into all of the details about this cancer risk, but it is, uh, thought to be a risk of 1 in 4, 000 patients, so very, very low risk. But, um, still being ironed out which types of implants are possibly going to cause this type of cancer and at this point, I just want to say again that it is my belief that most of the women who get breast implants are very happy with them. They don't call their breasts rock hard. They are very pleased with the outcome and they don't get any sort of disease or autoimmune disorder as a result of their breast implant.

But because these risks and possible side effects do add up to a lot of concern and worry, I think for those of us who are part of our community who have implants or who are going to pursue them, we just want to make sure you have the whole picture. That you know how to watch and monitor and what to look for.

When I went to get my tattoo on my chest after mastectomy and a delightful woman who did my tattoo art, uh, told me the story of how she had almost no breasts, kind of like I do now. And, um, she is really, really happy with her new breasts.

And she wears clothing that accentuates them and really celebrates them and in her relationship with her husband. And she couldn't be more thrilled with them. So I think for people like her and me who have had both of the experiences of Almost no breasts and large breasts. Um, it's easy to know kind of where you stand and what you feel, as a result

of that body type, but you never really know what you're missing if you haven't experienced it. And that's part of the difficulty of making the decision to get breast implants. I think, especially after breast cancer, you don't know what being flat is going to be like ahead of time until you experience it and look in the mirror afterward. So I understand why it's really hard. And it's, it's hard to be rushed into that decision as well.

I think for patients like Christina, last week's guest, it's really easy to know what's right. You know, if your breast is, you know, implant is exploding outside of your, your body and it's like, Telling you that it wants out right away. You know, it's, it's easy to get that explant and to go on to be flat, but I think for people like Anna who had to live for a dozen years with these mysterious symptoms that she had no idea were connected to her breast implant, then it's a little bit more of a sad story to look back on and to tell.

So if you'd like to read more about all of these phenomena, the rupturing, the possible cancers, the breast implant illness and capsular contracture, the website I would send you to is the one for the National Center for Health Research. Their website is www.centerforresearch.org, and it's right on the front of their page.

Um. the information about breast implants and risks. And you can go and look for their black box warning document and their checklist document. And I would recommend printing it out. So you have it handy. I had a good friend just diagnosed with breast cancer a couple of months ago, and I was able to be strong and objective and holding this in my hand while talking to her, knowing that I'm not using my bias as a guide, but Just listing out the facts for her because, unfortunately, I know that her surgeon probably doesn't have time to do that.

So, I would highly recommend going and printing out the checklist for friends of yours who are going through the decision making process or friends of yours who are suspecting that they might have a problem with their current implant. Unfortunately, the FDA is pretty slow to correct any of this.

industry sloppiness. And we don't know exactly which kind of implants cause which kind of problems. The industry has not been pushed to do enough good research on the effects of their products, unfortunately. And so we also need to really push Our Congress people to push for the FDA to regulate this stuff better so that we can feel more confident recommending that our friends do get implants when they feel the need to without being nervous about them.

And so I think that's a really important thing for those of us who are comfortable talking to Congress. People or writing to them or sending them an email. I think that would be a good use of our time around this issue as well.

The bottom line is I think some of us just have bodies that respond more strongly to foreign objects. So it's good to know these things and have conversations. Know where to point people for the resources. Be sure to let me know what you think of this. I have a new Substack newsletter that's really interactive and I have a number of threads for discussion on it So I'm excited to see your your ideas and input on this.

If you subscribe to my Substack you'll get the email updates for it, and it's just Uh, abreastcancerdiary. substack. com if you want to join. And that would be the place to respond to these kinds of kind of touchy discussions.

Next week, I will have a very personal interview with a dear friend of mine here living locally, um, to me. I've decided to do a couple of interviews with friends that I see often in my own breast cancer community who are pretty newly diagnosed and still really struggling with their diagnosis and outcomes. One is still struggling with an early cancer diagnosis, early breast cancer diagnosis, and the other one is dealing with a second cancer diagnosis.

I feel like I've kind of erred on the side of telling stories of victory and encouragement and coming out of the struggle with a great perspective. But my next couple of interviews are going to be a little bit more personal and raw and kind of from, uh, the midst of the struggle, I guess, and things not being resolved yet.

So I'm happy that I can tell their stories too because these are really important stories and maybe even more meaningful for those who are really struggling and coming out of the midst of change and body resolution. And hopefully you'll relate to them. If not, feel free not to listen to them. If they're a little bit too triggering for you, they won't be for everyone, but I look forward to having these very special guests that are friends of mine from my local community.

And I'll talk to you then.

This episode's guest is Christina Miner, host of Our Scars Speak Podcast. Today Christina shares about her experience with capsular contracture and her openness in sharing her scars publicly. 

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Resources from this Episode:

Christina's interview with Women's Health is here

Transcript:

 Today's guest is Christina Miner from Our Scars Speak. Christina is a fellow flat advocate who's also in my Mastermind with my former guest, April Stears of Wildfire Magazine we're co advocates in the breast ca cancer space in many different areas, both podcasters, so we learn from each other sometimes on a monthly basis with April and some other breast cancer entrepreneurs in our mastermind. And I've been learning more about Christina, listening to her podcast, have so much in common with her, and I'm thrilled to have her today. Welcome Christina.

C:

Thank you for having me. I'm so excited. And it's so funny when you came to me and asked me, would I be a part of this? I was like, ABSOLUTELY! Cause unbeknownst to you. I had followed you and your story about DC is and things of that nature and how things that you found out and you didn't know. And I was like, wow, and it was just so powerful and enlightening to hear you share your story on. I think it was YouTube that I found you!

K:

Oh, really? I didn't know that.

C:

It's been a while ago, but I was like, oh, and I used to always think about you and just like, I hope she's okay.

K:

Aww. Thank you.

Yeah, when you share the raw stuff on YouTube, you kind of leave people hanging, and then YouTube doesn't show them the follow up video that says, I'm doing great. So it's kind of frustrating sometimes, but. Thank you for following me. I had no idea. So you live in Prince George, Virginia, on the other side of the country from me, and you are a counselor and working towards doing a master's in counseling and becoming a clinical therapist.

And up until now, you've been also, you've been doing life transition coaching with individuals as well. Is that mostly online?

C:

Mostly I do have some clients that have been around town that really have gone through, you know, like newly diagnosed with breast cancer. So yeah, or either they're starting a new business and mental health. So I do consultations and coaching and I call it transitional coaching because it's usually at a transition of life. And a lot of people are like, let's just get to the raw meat of what's happening. But I'm like, okay, we're going to get to that and we're going to do that. But how's it affecting all aspects of your life? Not just this one term, like how's it affecting going to potentially affect your health, your family, you know, your social life. So I try to make for sure their wellness is also encapsulated with just with the problem or the newness of a new venture that they're having. So, yes, I do transitional coaching and I do qualified mental health. I'm a qualified mental health professional, which is someone who goes in the home to do case management sometimes with various clients in Virginia.

Okay. So you work for the state right now. Or you did.

C:

Usually it's private organizations.

K:

Okay, cool. Okay. And what are you hoping to do once you have your master's? Are you going to branch into anything new?

C:

Yes. Well, not really new—I've done it before. It's just, I wasn't licensed at the time. Before breast cancer, I also was a partner in a mental health agency, a community based program. after breast cancer, I kind of, you know how it can be kind of stressful and you just like, you didn't, I didn't want to manage anyone.

I just wanted to relax for a little bit. So that's when I said, you know what, during this time, I'm just going to see which direction I want to go. And I was like, I talked to my partner and I was like, maybe I'll. Go ahead and just get a license in counseling and become a therapist. And so that's how I went in that direction, all for the hopes of one day having a wellness center where I want to be able to just like, not just therapy. Everybody doesn't want therapy all the time. So there's a lot of holistic things that people love to embrace when they're going through life period. Not just necessarily something that has happened to them, but. As you know, because I know you really, you know, you love various holistic things, yoga, you know, um, Pilates, uh, mindfulness meditation. So I want to have a wellness program, but I will probably just start out with the outpatient therapy, um, center first and then start incorporating all the other holistic aspects to it.

K:

Wow. I have had a similar dream, actually. When I first met my friend and mentor, Marlena Murphy, who passed this last year from stage four breast cancer. She was so inspiring to me because she worked in a place like that, like what you're describing, and I'd never heard of it before. It was a breast cancer patient-centric clinic that served folks not only in mental health, but also in massage therapy, physical therapy, nutrition, which is my thing. And I was like, Oh my gosh, that is such a great business model. So I'll have to talk to you more about that, that center that she worked in and it's in Georgia. So it's not super close to either one of us, but maybe we can meet there someday and do a little tour.

C:

Because honestly, when I was in one of my classes for career counseling, I came up with another idea to add to it. We had to think of this model of what, what would you do if you, you know, it had to be something different. So I'm not going to do a wellness center. Let me add something else. And something that stuck out to me and reminded me when you were speaking a lot of times when we are getting, you know, acclimated with life after or during our treatment or after our treatments. people change professions, and sometimes people want to change professions or go back to their profession and they just cannot their acclimation to society. Everything is just different because we've gone through this traumatic experience. And so I've seen where there's an absolute need to help people into what they want to do now, because now their perspective may have changed. You may want to do a whole different course far as career.

K:

Yeah. I relate to that. I can never go back to the me that I was before breast cancer as much as other people do and they have no problem doing that. I just can't somehow. So, well, let's talk a little bit about your experience, with your, your diagnosis and treatment. You had like me, your main diagnosis was DCIS, which is a pre cancer and the ductal areas is kind of what they're thinking. And, um, you had an expander placed because you had decided to get a double mastectomy and implants. Tell me the story of how that expander changed your life. What was that like?

C:

Wow! So with with the DCIS, you know, of course, I chose a double mastectomy and For various reasons. I just I was trying to avoid all Treatment for as radiation not to say that I never would do anything like that But it was just up for me and what I knew I was facing. I was trying to avoid all that meanwhile I was like well, I don't know, maybe I could get a little bit of my life back so maybe I'll do reconstruction.

Flat was given to me as an option. I must say by my doctor as one of the first options, she was like, you can go flat or you could, and then she started riddling off everything else. And I was like, okay. And I had never really heard a flat, you know, like aesthetic flat closure or just that period as being an option. I was just blown away that because a lot of people don't get that from their doctors.

So she asked me about, um, you know, I could get expanders and then I could get… What was it? The gummy, I think was the gummy implants afterwards, um, after my skin expanded back out. So I was like, okay. So I asked her about the material of the expanders and she was like, it's the same material as the implant, except for I'm going to inject saline in it for your, um, when you come in here every so often. to expand it to the size that you want. And I was like, okay. So did that. But soon right after surgery, I was just sick, constantly. I had a temperature of 103 for the first three days after surgery. Um, didn't know why, but it went away. But then I had a low grade of 99. 9 all the way up until I got the expanders taken out. Um, I had a rash. Every time I ate, as soon as I put it in my mouth, it came right back out. Um, but I didn't have stomach cramps, but it was just like, as soon as I ate, it just came out and then I had headaches. I started having headaches. I started being fatigued. I started having sweats. my joints were aching and then I would try to walk and it was like, to get up, I was like having difficulty. Um, as if I had like arthritis riddled body completely, it was just a lot of different symptoms that I had at one time.

So I was, my first thought after probably about a week of having, um, after the surgery, I'm like, “what is trying to kill me?” Because. It just, it got worse and worse every day. So on top of that, I started noticing that the side where the cancer was, the expander was looking like it was pushing out. It was like growing. And I was like, okay, I haven't had a fill this week. It shouldn't do this. But as you know, during, after my surgery, COVID hit, so I couldn't go to the doctor anymore. I had to stop, but I was fine with it because I was at the point where I didn't want any more fills anyway. And every time that I was going, when I was telling her how bad. I was hurting and how sick I was. And she was asking, questioning me about the temperature. She was like, you know, I said, well, maybe then I, I was just feeling terrible. Like everything you can imagine. She's like, “are you coming down with something?” And she was thinking COVID. I was “no, not that I know of I've been home.” So I had all those issues. Now I couldn't see her and now all of a sudden this left side is starting to contort, starting to turn black. it looked like I had cigarette burns on my skin. It looked like the expander was coming out my chest when I was turning. I could hear the slushing of the saline in my chest. It was an absolute nightmare and then it started happening on the right side. But not as prominent, but it was happening. So I'm telling her all these different things and she's like, okay, maybe you have an infection. She's trying to look at me on camera. She couldn't really see some of the things I was talking about. And sometimes the camera would fail. It was just a mess.

So finally when I went in to see her, she was like, cause she couldn't at that point, she really couldn't see everything. Cause it hadn't, it wasn't as bad, but the day of surgery, I was like, well, can we just go ahead and do the surgery? So the day of surgery, looked at me. Well, I'll take that back. We had another appointment in between surgery and the day of surgery. And she said, “Oh my goodness, you must have breast implant illness. I think you may have breast implant illness.” And I said, what is that? And so she was telling me how like the body can reject the material of the implants. Um, I said, of course I Googled and I was like, “oh, you think I'm losing my mind?” Cause a lot of doctors associated with, um, some, a mental disorder, you know, like, oh, that it's just, it's in their mind. And she was like, “no, I believe my patients. She said, you got about every symptom here.” Um. So she said, well, let's see how you do with, you know, the implants. the day of surgery, she said, but I don't know if you're going to do that well, because if you're having this reaction, she said, but maybe I could, she said there was different types and stuff. And I was like, okay, I said, well, I don't know if I want to do that. She said, well, we don't have to. She said, but I'm thinking that might be it. She said, but I don't know for sure. So that's kind of how she worded it. So the day of surgery though, at this point, Everything was twisted. Everything was about to pop out my chest. And she looked at me and she's like, you have capsular contracture. it's the highest one, the highest level, so what do you want me to do? Do you want me to do an implant or do you want me not? I said, look, at this point I'm trusting God in you. And that's all I know to trust because I'm going to be sleep. I said, and I've never gone through this before, so I don't know that you possibly could do while you're in there. I tell it, she said, well, you're kind of leaving this kind of vague. I said, okay, then if you think that I'm damaged severely, do not put nothing in me.
Leave me flat and that's it. So I woke up, she tapped me on the shoulder. She said, you're flat. She said, and I will never put an implant in your body. She said, because you were damaged that bad I had lost a layer of skin. So when she went in for the depth perception, the implant was busted and it popped open, going all over her assistant and everything. And she said, I was one of the worst cases she had seen with the hapser contractor and the breast implant illness. So after that, I came home like that same day, I felt so much better.

And then when I came to my first appointment, she's like, you look night and day and my temperature dropped. So that’s what the expanders did for me. So I didn't make it to the end point.

K:

Wow. That is an extreme case. That is definitely the most extreme case of a bad response to, well, it's not even an implant. It's just the pre implant that I've ever heard. Did you have a known autoimmune disorder before that or anything you are aware of?

C:

Not to my knowledge, I do not. Now, is it to say, that I do and I just don't know because,
diseases. It takes them forever to figure it out. Um, but not to my knowledge. I've never been diagnosed with like sick a cell or lupus or anything far as that. So, said, she said, you know, you may have an underlying autoimmune disorder. She said, it may just be that your body just does not like the material. was thinking, I had other things, you know, like I've had knee surgery. I've had, you know, um, root canals, you know, just thinking of things that I may have placed in my body before and I've never had it. That was the worst had ever experienced in my life. It was worse than the actual cancer.

K:

So you had how long to get ready for the possibility that you might wake up flat? How long did you have to process that?

C:

Um, that day, like right before I went into surgery, because, because of everything that was going on with COVID, it wasn't like I had this great workup, prior to, because the doctor's office was closed. You're on a camera that, you know, they didn't really use that prior to, so they're trying to figure it out.
I'm trying to figure it out from my end. So the video wasn't always quality. Um, and then, yeah, I couldn't go into the doctor's office till like, I think, like I said, I've had, I had those two appointments.
The one in between the surgery and the one prior to that, but that, that was it.

Basically right before surgery, she came in and taught me for an hour. She just sat there with me. I was her first case after COVID. So, well, you know, once they opened the doors for us to get surgery and I, she was trying to get me in prior because I kept on telling her, like, it's going to fall out. It's going to fall out. She’s like I cannot get you in. And I was like, but why? I was like, this is like an emergency. She said that she had even taken the initiative to call the insurance companies and call, you know, talk to the hospital and they all said it was cosmetic. And I'm like, excuse me, like, I didn't just wake up one day and say, I want to alter my body and I want implants today. It was because of cancer, why I went this route. So how is that deemed? I said, I get why they say cosmetic because it's an implant, but I don't understand why it wasn't—it was nothing that I elected to do because of just wanting to. I because of something that happened to me out of my control.

K:

I imagine that's probably just that there was no category to put it in. And so it had to fall into that next closest category, which is not okay. Yeah. That's, that's frustrating.

C:

Because even if it was elective, if somebody's telling you this is falling out my chest. I did have a friend, her implant fell out in her shower during COVID they got her in, but it's like, why does it have to get to that point? Because now it's a risk of infection really bad because I'm at home. So, yeah, but. Yeah, that day of surgery, she sat with me for an hour and, um, I remember it was her first surgery and coming back from COVID and they got their vaccine. No, tested that morning for COVID vaccine had come out, but they had got tested that morning for COVID, which was like the first test, I guess, that they had had.

So they were all talking, you know, it was just, a whirlwind of events, but she sat there with me for an hour. And went over to various things and she said, well, if you do go black, then what we'll do, we could later talk about other, you know, um, if you want to do other revisions or anything of that nature, but I just, I was tired at that point after I woke up had to realize I'm black. So, no, I just had maybe we talked about it for about 15 minutes and it really wasn't talking because. I had her kind of going in there blindly. Like “you figure it out because I don't know what you're about to go into and you're the professional.” She was like, that's not fair. I said, no, but I don't know.

I don't know. And this was so unexpected. And with COVID I couldn't come in and down and have, I said, you've already had a conversation with me about different routes I could go. I said, and this just, please use your best judgment.

K:

So, did you have a choice as to whether or not to leave some extra skin or to have a tight closure or did you talk about that?

C:

So because I put her in that kind of gray area what she did was primarily flat and she left a little bit of dog ears on the sid—not much, but she left some. She was like you can go back and we can do a revision. She said but I'm not putting an implant in you ever again in life She's like nothing even remotely close to an implant. Um, and she talked about you know, like fat grafting and different things like that. She did not do DIEP flap because she's like the surgery is like too long, she just doesn't do it, but she'll give me a referral. So she went over those options with me and she, she said her reasoning for leaving was because in case I woke up and she said, you know what, maybe I do want to try this, that, or the third.

She said, if you want to try an implant, feel free, you just gonna have to go to somebody else. But she did leave a little bit of skin back for that reason, but that was only because I left her in a very gray area with my decision and I understood why she said, now I can go and take that off. Said it would be another surgery. I hate to put you through it. She said, but because you left me kind of in this gray area, that’s what I did.

K:

And you didn't go back. How did you feel about being flat? Like, were you ready for that or was it really shocking and traumatic?

C:

I would say that—I don't know what, what has always spun out to me with this whole thing was just hearing the day that I got the diagnosis and hearing the word carcinoma. Um, ductal didn't matter in situ. I didn't care about any of that. It was just carcinoma. So, I used to work in the medical field and I used to work with this one doctor whose idea was if you got cancer, be as proactive as possible because it's a disease that's one of the worst, you know, like it, When it comes back, if it comes back, it can come back with the vengeance.

So his thing is do the best way, do whatever you can first to eradicate it versus kind of like taking a little bit and that was his. No offense to anyone out there who's against that, I'm not trying to say that's what you should do, but when he spoke with me, that always stuck in my head. So, that being said, when I woke up flat, I took it as the cancer's gone, to my knowledge, you know, and I don't feel bad.

Like, I was so sick from breast implant illness and the capsular contractor that even though, because even before that, I had already lost my breasts. My breasts would never be the same no matter how much plastic surgery they gave me, so I already felt there was that void there of not being who I once was, right?

So with that being said, when I became flat, it was almost like, so I had, you know, I went and get my, um, prosthetics and stuff and people were like, okay, you can wear your prosthetics. That'll help you make you feel better. And I said, you know what? No, I want to embrace who I am now and I'm flat and that's who I am. Now, do I have moments where I see people in bathing suits or certain dresses? And I'm like, “Ugh”. Yes. I do have those moments. I allow myself to be in those moments. But I don't dwell in those moments because to me, I'm alive. So because I'm alive, I'm going to talk about whatever I need to talk about to help other people. And it gave me almost like a sense of confidence that I never had to walk around flat. And I know sometimes people look at me weird, probably like, “she a boy, she a girl?”, or whatever the case may be. But I'm okay with that still because they don't know my story, but Hey, if you want to use it as a way to get to know me, we can talk about what happened to me.

And so I kind of, I use it now to the advantage of sharing with people about flat aesthetic, aesthetic, closure, and also about cancer in general, um, breast cancer. But yeah, at first it was, you know, it was like, okay, this is my new, this is my new me. A part of who I am now. She did what I asked her to do,
and I told her, I said, I'm trusting God and you.

And I, and I believe in that wholeheartedly that she did because she said, while she had me open, huh, I could do this to maybe counteract the reaction. But she said, Nope, I'm gonna leave her flat. And I'm glad she did because if I would have had to go back, I would have probably been upset. But, um, so no, so I'm, I'm grateful. I embrace my decision. When I woke up, I was like, “Oh, okay.” And that's exactly what I did. I was like, okay. And then when I felt so much better, I was like, woo. And then I did try to prosthetics a couple of times and I'm like, no, then I was like, I go back to work. Should I wear them? Or should I just be flat? You know, cause I could walk around with them one and nobody ever know nothing. And I was like: “no, I'm not, not me.” And it's not to say that I won't ever wear a prosthetic or ever get some type of reconstruction far as take, you know, going a little bit more aesthetic, um, flat closure. But the point that I'm trying to make is that I am allowing myself to accept me for me because there was a time, even with breasts, I was not very confident. I had very low self esteem and very low self worth because of things that had happened to me. as a child.

Then eventually I got out of that and I said that stuff is not going to define me, but I still had issues with image. Even when I was skinny and healthy and athletic and this, that, and the third, I still had issues with image. And I was like, I'm not going to allow that to put me in a place of depression for the rest of my life. I'm going to take control over this. And so that's what I did.

K:

I am so impressed with your surgeon being so educated on breast implant illness, being so responsive and saying right away that I'm not even going to put an implant in you. That is, that's something you don't hear about very often. A lot of times, like you said, when you look it up online, surgeons will blame the patient and say that it's the patient's problem and it's all in their head. So it's great to hear an antithesis to that narrative of “it's all in your head.” Um, I mean, obviously this was an extreme case. You couldn't really deny it. It was right there in her face, but still she was so respectful of you and responsive as she could be during COVID.

C:

Yeah, because I knew nothing about breast implant illness until she said something. I had never heard of it.

K:

Yeah. Yeah. And how, how would you, yeah, it's a pretty obscure thing unless you've been in the breast cancer community for a while and then you hear about it. Well, tell me the story of Our Scars Speak. I know there's a story behind the name of your podcast.

C:

There is a story. Um, so I, after, you know, breast cancer going flat, all those things, I ended up joining the first group I joined was, uh, Here for the Girls and it's an organization in Williamsburg. And I ended up being a co facilitator, very involved with them. And then also I had joined, um, Stand Tall Aesthetic Flat Closure. Well, when I had joined Actually, they found me first because they wanted me to post a photo of myself on their Instagram. So I was like, sure, I'll take it. It's fine. And, um, so then from there, it was Renee and Kim. Um, Renee and Kim came to me. Renee Ridgely? Okay. And then Kim Bowles, right?

Yep. Um, the one from Stand Tall, which is Renee, and then Kim is from “not putting on a shirt”. So they came to me like, “Hey, would you be interested in doing an article with women's health magazine?” Well, when they told me, I was like, sure. But then I thought, well, is it the real women's health magazine?

Or is it like, Some, some other magazine that I'd never heard of. the editor contacted me long story short. And, uh, I did this art, I did this spread of women's health mag. Well, it was in, it wasn't in the mag, the paper version, it was online. So they thought they were just going to put me like down below, like somewhere about the health, you know, like a health article, click on, they didn't real, my editor didn't realize they were going to feature it on the very front for like the whole issue. So they wanted to do a photo, you know, with me with my shirt on or not, you know, it was up to me. And I was like, I had prayed about it. I was like, Oh, should I, should I not? And then I was like, no, yes, people need to see this. Right. So I ended up, um, I said, I'm gonna do this. So they said, well, would you, we can find you a photographer around and I was like, no, I want to come to New York. I want the whole experience because I knew they had more, um, their photographers. They were probably a little bit more educated on what they wanted as far as what they were trying to capture the ones that they worked with. So they allowed me to come to New York.

And I remember the day of the photo shoot, I was standing in the mirror and I said, Oh my God. scars speak. So that stayed in my head all day long. And we did the photo shoot and I was like, wow, this is, this possibly could be a big thing for a lot of people to see who are going through or getting ready to make a decision of going flat or have to go flat. So I came back home, I was on the plane and I was writing out, I made a poem called my scars speak and it just went through my head. Like my scars speak, um, sadness, my scars speak pain, my scars…. It's just this long poem that I wrote about from the time that I found out I had breast cancer to the time that it was no longer in my body. And so many people were like, “Oh my God, I can relate to this. This is exactly how I felt.” But then from there, I was like, no, our scars speak. So that's how that title came about. And then I was like, okay, what am I to do at this? Once again, cause I'm a true believer. I prayed about it and I was like, what am I going to do?

And it's like that whole weekend I was getting downloads of just everything. Like this is who you need to have up there. And so it's breast cancer, survivors, thrivers, metavivers, previvers that I have to come on. It'll be their caregivers that can come on and, you know, there's a vetting process professionals that work within the breast cancer community, those who can educate us that are doctors, a tattoo artist. I've had various people attorneys. I just want them to share. Some of them have their own personal story so they can share their story. Or they can share how they got into the breast cancer community. Cause I want people to know how, you know, something about them and that they're just not out here trying to get money from people, but how did they get involved and what’s their why to being a part of this community? And so I have various people on to share their stories and I love it. I love it. I love it. I love doing it. It was going to be just the IG live and then it just spilled over into the podcast world. Um, so yeah, so that's how that all came about through that one article.

K:

Wow. So the women's health magazine article, what was the kind of the punchline of that or the headline of that? What, what was the interview like?

C:

I’m trying to remember the actual title name, but I know that it was all about being flat. Why I chose not to be, why I chose, and it states it in there about why I didn't choose reconstruction, and why I decided to go flat. So it's about my journey of the breast implant illness and the capsular contractor and the acceptance of being flat.

K:

Okay. So that was a really big. voice that you had to tell the world about breast implant illness. Did you feel like that was a powerful statement?

C:

Yeah, I felt it was because some people are like, oh, aren't you excited? I'm like it's my mission. So for me, when I have what I call assignments, I, I, I do them so I don't get too caught up and even, “Oh, this is huge.” Like, and maybe that's wrong with me because sometimes you do need to celebrate things, but I get caught up in, this is something that I've been placed here to do. I need to do it and I need to see it to the end. Um, and so that's how I took that assignment. Like, this is something that could really, really benefit other people. Not just me being out there showing my chest. Um, scars from that, the scars from having children, hysterectomy scars. Like it's not just. It wasn't just that for me.

It wasn't about, I didn't feel it was about me. Yes. It’s my story, but I felt my story was a vehicle to help other people who felt that they couldn't speak or who had a, you know, they're at a crossroads about making a decision. And I always say this, but it also spoke to the people who are no longer here, who can no longer speak. Who have transitioned into heaven or wherever they are, right? So those people still have a voice. So everything that I do is not just for me, it's for everybody. Cause I'm like, wow, who may not even have anyone in their family who have breast cancer may see that picture and go back and read the article. who knows? Maybe down the line? Somebody in their family have breast cancer and then who knows, maybe, you know, so I always look at the bigger picture and then this year had no clue. This happened in 2022. I had no clue they were going to repost it on their, um, on their Instagram. So the first time they posted, it was like a lot of likes and stuff, but not that many shares, but this time it was a ton of shares. So that even made me happier because it's like, okay, our voices are being spread even further now.

K:

Did you share it on your personal, like, actual in person relationship Facebook account? (Yes) Okay, okay. So let's talk about that because I also, um, have shared my bare chest publicly and I have not shared my bare chest, um, except maybe in a very different way. with like a hundred other women, um, on my, on my personal Facebook account with people I've known my whole life and having grown up in the church. My dad was a Baptist minister, um, very similar, I think, to your background in terms of like having a lot of personal contacts who are Christian and maybe even conservative Christian.

Um, how does that hit? Like, how do people respond to you and how do you grapple with some of the misunderstandings that may naturally happen when Christian women are getting up and showing their bare skin of their chest?

C:

So I, you know, when I said I had to pray about the whole article thing, that was part of it. Like, okay, am I, I was like, I have nothing to show really. It's just a flash, but I'm like, I know how people can perceive it. Like you're still being, you know, indecent. Right. So I, I have learned because I have ministered in prisons and everywhere. I learned early on, I was always kind of considered a little rebel in a way. Um but at the end of the day, I have to live with the decisions that I make. Meaning if I feel that it doesn't bring me peace, not just in my Christina, just being Christina, but like in my heart, what I call my spirit, if I feel like it doesn't bring me peace, then I'm not going to do it. If I feel like it brings me peace and I feel like. Okay. I prayed and I feel like God is really leading me to do this. I don't care what nobody says I'm doing it. Everything that I do. I mean, not everything, of course, but the majority of things that I do Always try to make sure that I really pray about it before I move on.

Is it a state that I get it all right? absolutely not because I get a lot of wrong, I really really try to be sensitive to that I walk in my faith with God and what he would call me to do not just what I want to do because me being who I am, I probably would I've done that. Would I've shown that I'm overweight?

Cause I always told God, he had a sense of humor. I was going to be a model years ago. He told me I was too short. They said I had all the other characteristics without skinny. I had long hair, blah, blah, blah. And I said, Oh, so you wait till I'm overweight and have no breasts. I am modeling everywhere. No, it's just like, it's just, to me it's like a sense of humor. So you know I’m like, okay, but I'm willing. So because of that, always remind myself. At one point I used to abuse substances and I used to abuse alcohol, right? So because I had gone through a lot of trauma in my childhood and the reason why I'm saying this is because of how I am now. I made a vow that Once I stopped everything I was doing I was functioning. But once I stopped that, once he allowed me, help me to get through that. I would always share what he wanted me to share because my story is not my own. So because of that, even if I feel like, you know what, they're going to judge me, they're going to have so much to say. They're going to say, I'm not walking by faith. They're going to say, I'm not a Christian. They're going to say I'm a heathen. I don't care. Can it hurt? Yes. But I can't care enough to stop because they're not my God.

K:

Yeah, that's powerful. That's a big conviction and I'm glad that you have that. Um, I feel like There's, in the breast cancer community, even folks with implants, you know, anyone that's been through breast cancer totally gets it. Your body is different. You should be able to express the difference that you've experienced.

And outside of breast cancer, I think a lot of my friends, even friends that are like clinical therapists, social workers, you know, they're a little boggled by it. They're curious. They're not judgmental. But then there are people, especially of the male gender, who just don't get it. Do you have, and you mentioned you have a partner, do you have a partner that defends you in this area and understands you?

C:

OH my gosh. So my husband and I have been married forever. We've been married 24 years and when I got diagnosed, you know how they have you to come in for your consultation. So it was my husband, my sister and my mom that I brought in and we were sitting there. And so my question was, what's survival? Well, they're going to tell you five years because that's survival for everybody, right?

That's just like a, they put everybody in one big room. Um, so she's going over all the statistics and stuff. So my husband asked a good question, recurrence. And. She said, well, if she does lumpectomy, radiation, if she does lumpectomy without radiation, like she gave me all these different choices and he said, well, what about if she had a mastectomy, you know, like a double one. She said, oh, it drops it to like 2%. He said, we'll go with that. I said, WAIT a minute! I was like, wait, it's my choice! He said yeah, but no, I want you here. With us. He was like, so, so yes, he's to answer your question. He's very supportive. It was, he would never admit this, but I feel, cause I know it was uncomfortable for me.

The very first time we were intimate after, you know, after all the healing and stuff, it was, it was strange for the first two times, first few times actually. And he would never admit that's the case, but you know, your partner, right. You know who you've been. And it was like, this is strange for you and me. And but you know, with time. And doing what my friend had asked, told me to do another breast cancer survivor. She's like, you know, just you and him explore your body again and everything. And when she said it, I’m like, that makes sense. So that did help, you know, but, um, but yeah, he's, he's very much supportive.

He's, uh, He was like, yeah. And I told him, I, I'm not one of your marines. I was like, you cannot answer for me So, um, I said, but it did, it did make me feel loved and supported genuinely that he spoke so quick and was like, no, take them.

K:

Yeah, it's nice to know that they're behind it. My husband was the same. He was trying to zip his lip really, really hard and not have an opinion and let me decide. But then when I said that I wanted the second one off also, he was like, Oh, I'm so glad that you said that because that's what I would like to, because yeah, of course they care more about our, our health and longevity than the way that we look.

That's great.

C:

So that was the extent of that. I just. I'm so grateful for the support of family and I always call it my village of people. Um, my family, my and the breast cancer community. Uh, we are a very, you know, unfortunately getting larger, but at the same time, I just think there's a unification within it. That is something I can't describe it. And a lot of us, I think we have a very difficult time describing it because, it's very hard to describe because we're just very linked together in a way that a lot of people do not understand. And it's one of those things that you would not understand it unless you went through it. And I don't want anyone to go through it, but I have to say I found a whole nother family within this community.

K:

That's wonderful. We just have a few minutes left, but if you have any advice for younger, uh, flat advocates or activists, um, coming up in, in the community or just folks dealing with capsular contracture or breast implant illness, do you have any advice that you would give them early on in their journey?

C:

I would say definitely continue to fight for what you know is happening within your body because only you really know. And a lot of people say, well, that “pain usually doesn't come with breast cancer” or “you're too young” or this or that, but no, you know, your body, I've, I fought for almost 20 years outside to say that I had cancer a whole 20 years, but I started having symptoms. So continue to voice your opinion, continue to, you know, if you don't know how to advocate for yourself, ask someone who's within this community to help you. That's what I did. I kept on asking friends that had gone through breast cancer and I hadn't even gotten diagnosed. I just knew the symptoms that I was have, I was having and experiencing. not normal. I began to learn from them and learn also how to advocate for myself. And if you don't know how, ask someone to come with you. If you go to an appointment and you may forget something, and this is big, whether you're in treatment or not in treatment. know, tell the doctor you want to record so that you don’t forget. I think that's a big, big one and make copies of all your records, not just digital, but print them out.

I'm saying all of this is because I see so many people who do not have these, they haven't done these things. And then they are like, I don't remember this. I don't remember that. And so sometimes writing stuff down, you'll forget to write it. Cause it's just so much information coming to you. So ask them, can you record or ask another person to come with you. Just remember that your voice definitely matters. opinion matters. how you want to treat your body matters. And no one should tell you any different than that. And you should fight for the right to ensure that you are being treated respectfully because you can always get a second, third, fourth, fifth opinion. Um, and use that if you need to. And when it comes to advocating, if you feel—some people don't feel like they want to share their story, they, they, they don't want to share their story and that's your right too. But if you feel like you want to share your story, don't be embarrassed because someone out there needs to hear it. Either they are going through it or getting ready to go through it. don't feel like, Oh, nobody's going to listen to me. Somebody will listen to you. Don't, I know sometimes people get caught up in numbers. Well, I didn't get that many likes or I didn't get this or that. Don't worry about that. Just share your story,
Share your story to help other people. So that's basically it for me.

K:

Thank you, Christina. It's been so great to hear a little bit more deeply about your story. Um, tell me about your handles on Instagram and, and anywhere else that you're at.

C:

Well, um, if you want to find me personally, you can look up Christina minor and that's M I N E R and Christina is C H R I S T I N A. I just always assume people know CH because people try to fit K, but, um, so you can find me at Christina minor, or you can find me at Our Scars Speak and that's on ig and it's both of them on IG um, Facebook.

And then when it comes to YouTube, you can find me at “our scars speak” and also podcasting at our scars speak. So very, very simple.

K:

Great. And then you're the article to the women's health magazine. Is that still linkable? Can I find that? Okay, cool. I'll put that in.

C:

Yeah, if you can, um, you can look it up and post it underneath, but for anyone who's listening, you can look up Christina Minor Flattie or Christina Minor Women's Health Magazine. It'll pop up.

K:

Okay, great. I'll put that on the website for the podcast. It's www. abreastcancerdiary. com.

C:

Absolutely. Thank you.

K:

Well, I'll see you there. I will talk to you soon in our mastermind, and until then, I hope that you stay well this winter.

Thank you so much.

My new friend and fellow podcaster, Tina Conrad, is this week's guest and I couldn't wait to hear how she did it. She maintained a high pressure job as a manager in a fast paced fashion corporation right through breast cancer treatment and recovery. She is truly a warrior woman and I'm so thrilled to tell her story here.

Transcript:

Kathleen:

My guest today is Tina Conrad. She's a senior planner at Carhartt, as well as the host of DJ Breast Cancer, another podcast. And she lives in Leesburg, Florida. Her breast cancer was stage 3A. It was ER-PR positive and HER-2 negative. She had both ductal and lobular breast cancer. And like me, she has a mom who has been a breast cancer survivor as well and has gone through that as a long-term survivor, both of them have had at least 11 years—in Tina's case and her mom even more years since any kind of recurrence. And I just wanted to talk to Tina today about what it's been like because I was telling her, I don't know anyone in my life in the breast cancer community here on the West Coast who's been strongly entrenched in the corporate business world and who stayed there throughout their breast cancer story. And she is someone who managed to do that. So I'm kind of in awe of her. I found Tina through the Wildfire Breast Cancer Writing Community and she's a fellow writer there. And I've heard her story mostly through her podcast and she was sweet to offer me a little bit of advice and a mentoring session when I was thinking about doing my podcast. So we know each other a little bit!

Welcome Tina. And please tell us about your journey and how breast cancer entered your life in that corporate business world. What was your role at that time and how did it affect you? How did you exit and reenter? What was that all like for you?

Tina Conrad

Yes. Well, first, let me say hello, Kathleen. It's so good, so good to be here. I've taken a little pause or or a long pause. It's been a few years since I've done any recording, but it's just so great to be back and be a guest and no one else I'd rather be a guest with. So thank you. So, back to, gosh, back to 2013 when I was diagnosed, um I was a DMM, which is Divisional Merchandise Manager at a large retail outlet. um It was truly like my dream job, like we're where I aspired to be, you know, and I had a whole team of people and I was just recently married, um and like life felt really, really awesome, you know like where I just planned to be. and then you know I just stopped one day and kind of took um notice of my health because someone actually on my team had had a health scare, not not breast cancer related, but just had a health scare. And I was like, you know, like this breast of mine, like the nipples sunken in, something doesn't look right. And, you know, I kind of ignored it like for a few months. I was very much an advocate for breast health. I had gotten a mammogram when I was 30, when I was 33 because of my mom, I was very you know into all of that, but she had always had like a lump. And so this was like totally you know something different.

And so having this health scare with someone on my team, I was like, you know, I'm just going to go get this checked out. And, um you know, it was a mammogram and then, you know, they call you back and, you know, you can just kind of sense and read the room that like things aren't really normal. They they weren't like the other times I'd had a mammogram. And so, um you know, that led to um like an ultrasound and then a biopsy. And I woke up from the biopsy and basically the doctor said, get your mom's records.

That was the first thing I remember her saying to me. And so it was just very foreboding. So like I knew um things things weren't going well. So ultimately, yes, I received the diagnosis that you know I had breast cancer and it was pretty advanced on stage 3A lymph node activity. um fifteen I had 15 lymph nodes taken out. um So you know I did opt to get the double mastectomy just with my mom's history. um And then ultimately I did find out too, you know I had lobular which can often jump you know to the other breast too. So I felt very good in my decision you know that I had made um given my you know my family history and everything that had happened. um you know But I was i was busy. like I worked a lot of hours. you know I tried to plan my chemo around like the least intrusive time for work. I was still just very, very career focused. And everything changed. you know like Everything changed. um you know i I had never even taken you know more than maybe one week's time off you know in a row you know in my whole career. So you know with this cancer diagnosis, you know um with with surgery, I took several weeks off. Then with chemo, you know you you get yourself worse and worse. you know like The more you go on, it it's just harder. It's harder on your body to recover.

And there was one night, like I woke up and it came following, ah you know, my my oncologist was really great, really talked to me just like a human being. And he said, you know, who's your advocate at work? And I was like, well, you know, my my boss, you know, she she looks out for me. She does. He's like, no, no, no, no. I'm not talking about your boss. I'm not talking about that. He's like, who is your advocate? And I was like, well, I don't have one. He's like, well, then I seriously need you to consider taking a leave of absence. And I think he was just so black and white in that moment that I needed. And um you know so that was kind of my first taking a step back from work you know and in focusing on myself and you know putting my health first because I had always put my career first. So like that just was who I was. I've definitely changed just in my attitude and viewpoint to work. I still have remained within the corporate world, but I'm no longer like leading big teams, um and I'm happy. And I just have a different viewpoint, I think, on life and you know what is my priorities. And that's okay and it's not to say if ah someone listening there you know keeps going down a path of career, that's great too. But I feel that you know um you do have to put your health for it first. And you're doing it not only for you, but the people that you love. And that just became a different priority through this whole process.

So I was working with Sears Holdings, which was like Kmart Sears, obviously they're no longer no longer in business at the time of my diagnosis. And it was about two years that I had worked there that I just really had a calling that like my my work had to mean more to me. And Vera Bradley had a foundation on that specialized and in breast cancer. And so that was really important to me. in And you know we had so many great opportunities. I saw the foundation like where they do the research. It was so fascinating, you know just all the trials that they were doing. um so So I was really embedded you know not only within Vera Bradley, but you know i I did a lot of volunteer work with the foundation. So I worked there for nearly nine years. And then I just you know recently felt a need and a calling to do, you know again, something different. And so I've been in either merchandising or inventory about half of my career each. And um you know now I have a ah position that allows me to be remote. I've recently moved. um And I get a little bit more in the details of like the work and inventory.

I don't want to sound too much like a nerd, but like I love Excel. I love it. So it's just it kind of gives me a little bit more different purpose. and I'm just really enjoying it. So it's it's just been good for me in terms of like a work-life balance and where I see you know myself and you know just trying to help out too. I have an aging mother-in-law and trying to help you know her more too. So hopefully this puts me in a position where like i can I can do more you know and be more with my family.

Kathleen Moss

At the time of your double mastectomy, how was it going back into the workplace with a new body or a changed body? How was your experience of that change in that corporate setting?

Tina Conrad

Yeah, I think it was less about, you know, like the breast side of it, it was more the hair, you know, like the hair is a big deal. So coming back, I took my leave, you know, after I'd had my mastectomy, I had been through um like 12 rounds of chemo and so my hair was just starting to come back and it was just like that peach fuzz you know real tiny you know hair and I remember going to a store to to work on some kind of project that we were doing and a customer came up to me and she was like I really love your hair and it was just like such a sweet moment that like you never know what a compliment can mean to you. But that in that moment, I know what a compliment meant to me. you know and And I could have gone into, like oh, I just had cancer, all this, all that. you know Oh, really, it looks crazy. you know But I was just like, I stopped. And I looked to her. And I was like, thank you so much. you know like And it just was really, I didn't have to be a cancer patient in that moment. you know I was just me with short, short you know growing here and it was you know just a beautiful thing. um but But it was, in general, it was a hard transition. you know like It's kind of like ah you know like your badge of honor. like you're You're so vulnerable coming back. um I've written about it within Wildfire too, because I definitely had um a boss when I came back to work at Sears. We had just come from some meeting and I'd only been back a few weeks and you know it was just her and I walking and she was like, um you know now that you're back on the saddle, I really need you to step it up. And it was some of the hardest, harshest words I've ever heard you know in my entire life, because I thought I was so prepared. you know And I really come back and done everything I could do you know to to retrain my brain, to like study these notes, you know, to be a student again and like, you know, cause you're, you're out for, I was out for three months, you know, with a leave. So it, you know, it's, it's difficult to get quote unquote back in the saddle again. It's, it's no easy feat. Um, so you know I just realized in that moment, I can't work for someone that can't acknowledge, you know, she had been kind to me like on other occasions, but like now that I'm coming back, you can't be kind.

So it just put things in much more black and white than like I had kind of experienced before in my life. so So I went to go work for someone who had had had like a history of cancer in their own family and could acknowledge you know me as a worker, but also me as a human being. And like, that was very important to me. um And I think it's, you know, no matter what people are going through um in their lives, you know, it it doesn't just have to be cancer. It can be any kind of health or mental or any kind of, you know, issue.

I think it's just important to you know to to be empathetic and to understand. you know You might not know all of the details, but I think we have to be kind and like allow people the space you know that they need to heal and to be understanding when people need time away from work. um you know that's just That definitely changed within me, you know within that experience, to then share it with other people and to always you know, give people more the benefit of the doubt, you know, because work will always be there, you know, but um the the relationships and the kindness and the way you make people feel, um it's just very important. um and and And something that will always, you know, go beyond you, you know, even your time on this earth is like how how you make people feel.

Kathleen Moss

You mentioned needing an advocate ah when you were first diagnosed and it sounds like you did find that in your second job after diagnosis. What did that look like? where Where did that advocacy come from and how was that powerful in your life?

Tina Conrad

Yeah, I love I love sharing and like helping other women you know through through difficult situations. um I saw that within my mom. She's not so much on the global scale, but you know she would take a woman aside and say, like oh, you're not sure what a double mastectomy looks like. I'll show you. you know And she'd take them to the bathroom and show. you know And she was just very kind you know to people who needed maybe you know just a kind word or or a moment. And so I think giving back was always very important to me. um And I feel like, you know, there's so many things we can do boots on the ground to help women, but also research is so important. So first and foremost, I always wanna know, you know like we're just coming off of October when we're recording this, but where's the money going to that helps women? Not just only for the short term. um Women do need help, like obviously to within a diagnosis, but what can we do to help the next generation not experience what we did, whether it be through vaccines, whether it be through new trials, metastatic breast cancer, there's clearly so many things that we need to help others with. And so that's very important to me. And so it's, it was not enough for me to just, you know, walk away from the community, I felt like I needed a way to give back. And so, um you know, whether it was speaking at various events, whether it was starting up a podcast, um it was just, you know, very important for me to, to help other women and then to, you know, to support them through whatever they're going through.

Kathleen Moss

Well, thank you for doing that. It definitely impacted me in a good way.

Tina Conrad

Oh, good. Thank you.

Kathleen Moss

How was your mom's openness about her mastectomy and the way her body looked after mastectomy? How did that inform your experience going into mastectomy?

Tina Conrad

I think it was very important. You know, she was very transparent with me. You know, clearly she believed because she she she was told by a doctor, you know, oh, just get the lumpectomy. You're young, you know, this will all be fine. um And then they came back, you know, almost in the same location three years later. So For us, it was very important you know that she shared that experience. She wanted the best for me. She wanted to do the most. you know That would give me the most longevity of life. and so you know she was very much an advocate for me to do as much as possible, obviously, too to be um as vigilant you know to to that. And the way that I think my dad loved her through it is I also feel like the way my husband loved me through it, you know which is to make a woman just feel beautiful in the body that they're in.

And so i I feel very blessed you know to have a husband that loves me and told me every day of like every day of my cancer, whether I had no hair, whether you know um I was in the bathroom, whether I had you know this crazy bra on, you know like I just felt loved through it. And I feel like it's it's very important um you know to surround yourself with that kind of love you know of Whatever kind of support that looks like for you, but find people who will love you through it um Because you are beautiful each and every day of of your journey And so I think it's just important that you've you know, feel that and find people that tell you that as well She did yes, yes she did um, and I mean she looks great like she's she's doing great

Kathleen Moss

Did your mom have reconstruction of any sort?

Tina Conrad

Yeah, I just went to a softball game of hers today. She's 69 years old and she's out there you know playing women's softball, which is pretty amazing. you know So um you know just to see her and like you know living her best life you know and um it's great. So I think that she's you know so she's such an inspiration to me each and every day of wanting, continuing to take care, be active, um but also you know like help other women and you know um love them through it.

Kathleen Moss

So was her her experience having reconstruction probably informed your level of confidence going forward into reconstruction too?

Tina Conrad

Yes, yes, definitely. You know, things have even changed from the time that she had been diagnosed and then I was about 10 years later till when I was diagnosed. And then, you know, I talked to people now going through various things and things continue to advance, you know, each and every time. so you know, I think that is part of where the science is moving forward, you know, and and we need to keep doing what we can to keep that moving forward. But um, I'm, you know, it definitely gave me confidence that like, you know, hey, I can still feel like a woman, I can still walk into a room, I can still do all of this, you know, and, and feel my, myself, you know, and so, you know, that was a great example for me through all of it.

Kathleen Moss

Yeah, it seems like i I feel like if I put myself in your shoes or my niece who also works in a kind of corporate America retail job, I definitely would value my breasts more.

I think I would have given deep flap or implants a little bit more thought probably. So did you get implants?

Tina Conrad

I did. Yes. Yes.

Kathleen Moss

And you're 11 years out.

Tina Conrad

Yeah.

Kathleen Moss

So have you thought about getting your implants replaced or have you gotten them replaced?

Tina Conrad

I have not. It is on my radar to talk about actually I have like all new doctors because I'm in Florida. So I think that will but probably be like a consideration. My mom still has like her original ones too. So, but yeah, just like, um, I want to be transparent, like have those, I want to ask more questions. You know, like, I think, um, that's what's maybe great about our generation and below is like, we ask the questions, you know, we, we probe a little bit more. Um, maybe we're a little skeptical, but that's fine. You know, like that just means you're taking your own health into your hands. And I think that that's important.

So yeah, I want to do what's like best for me. I i don't know. I don't, I don't feel like I have to have implants like all of my life. I would be fine like with another route too. Um, so I just want to do what obviously gives me the healthiest outlook, um, on life in general.

Kathleen Moss

Mm hmm. Yeah, that makes sense. Yeah, I've met a few people locally who are in that spot where they're like 10 years out and they have been told in the past that their implants, you know, would last 10 years and they're just in that quandary of like, I don't know, should I get them replaced? And do I want to go through all that again? And it's an interesting little crossroads to reach, you know, especially as you're aging, this person in particular that I'm thinking of is quite a bit older than me. And she's like, I don't have use for them anymore. So maybe it's not worth the trouble. So interesting to think about all of those choices that we continue to have in this and this story.

Tina Conrad

Yeah, yeah It never, never, it kind of goes away, but it never goes away. you know oh So yeah, yeah. You never know.

Kathleen Moss

Yeah. I wanted to ask you about your spiritual life. Your podcast site has a really clear kind of progression into more and more talk of spirituality and especially within the Christian tradition. And I know that your spirituality, your beliefs and your faith have really informed the way that you look at your breast cancer experience. And so I wanted to ask you about um a scripture passage that you feel is central to your story and has given meaning to your breast cancer experience.

Tina Conrad

Well, actually, like just to set it up a little bit, I had had like a kind of a pain in like my arm, and so I had gone in to get some scans done. And then I was awaiting the results, because everything seems to take forever. And I had met my cousins, we had come from a very Catholic, um you know very religious upbringing. So to kind of meet them and spend time with them was was kind of very fitting.

And there was just a beautiful church in this town of, we were in like ah Covington, Kentucky. It was very near um Cincinnati. But anyway, um my one cousin and I decided to go to Mass and like, you know, go in and to this just beautiful, gorgeous church. And so we sit down and, you know, I did want, you know, time to kind of reflect and pray because of, you know, everything that was going on in my life. And I heard this verse, like this was like literally the the only like one of the Bible things that they read, but they talked about um the woman who touches the cloak of Jesus. And in it says, “but Jesus said, someone has touched me, for I perceive that the power has gone from me. And when the woman saw that she was not hidden, she came trembling and falling down before him, declared in the presence of all the people why she had touched him and how she had been immediately healed. And he said to her, daughter, your faith has made you well, go in peace.” And this was like the passage that they read and my cousin just you know turned to me and she said, well, if that's not a sign, I don't know what it is. And so we kind of had a moment you know just in church too. And so it was just it was very special and obviously the results came back and you know and they were good, but I have felt throughout my entire journey, you know, God's hand in all of it. And, you know, even like leading up to my diagnosis, I saw the most beautiful rainbow I'd ever, ever, ever witnessed. And it was just this immediate sense of peace came over me. And it was feeling like um it it didn't even matter what it was right or wrong, or good or bad, or, you know, positive, negative, all that thing, but like, God was in control, and it was okay. And it was just this piece that like, I can't I can't really describe other than like I just felt, and you know, this overwhelming sense of peace. And so that was kind of like the start of my journey. And then obviously I did get, you know, the news that I had breast cancer, but I always felt that God's put me on this path um to help other women to, you know, to be a light you know for others and to share like his love. um you know and And for me, it felt um not like a punishment. And there were times where I was like, are you punishing me? like I did ask the questions. I did you know wonder aloud. But I felt going through it, I felt more like an invitation.

Because I hadn't been as close you know to God, you know up it to that point I've been very career focused, you know, very very um Focused on things that like to me mattered at the time and and I think it kind of turned my whole world upside down with cancer But it was also a shot shine a light on many beautiful aspects and in faith was definitely one of them and so just to hear this passage and you know, in in this church, in this beautiful setting, it just kind of made it all feel like a painful circle. And, um you know, so so that's just been very important to me as my faith and sharing that, you know, with others and if you're not sure what to do, just, you know, pray or just ask God for, you know, for help, you know, and it's okay. It's just really a conversation with God is, is what I consider prayer. And so, you know, I, I do like, I have a Holy Bible app, like on my phone, I try to do various plans. Um, there's great things like when I was moving and I was really stressed, you know, I searched plans um you know that helped me with that. There's been times where I've had like difficult you know relationships. I've searched things for that. And it's just really helped point me to you know various scriptures that have helped me through through parts of my life. So I just encourage people you know to to have conversations with God and and it's okay. you know and And I do believe that God listens, and if you're open to it, um he's He sends signs. you know For me, they they definitely seem to come in forms of rainbows, um but you know I definitely see and hear of different things you know from Him, just it just it's a beautiful thing.

Kathleen Moss

Yeah, I can relate to the massive gifts of peace that descend on us in the most unlikely times and without even asking for it, without even knowing that it's possible, of course, because we're so out of touch with the spiritual realm, usually, at least I am.

Tina Conrad

yes

Kathleen Moss

And so, yeah, I love that. I love thinking about the spiritual world as a place of gifts instead of a place of guilt or shame, which is so often the case for us. I think we learn when we're younger you know about, well, I did. I have to speak for myself. like yeah There's a lot of fear. There's a lot of um judgment in the church. and And so I have a lot of injuries around that. And i I think that it's common to feel extra vulnerable as a breast cancer survivor and as a woman um in the midst of the common beliefs about “the gospel of health and wealth.” That if you do right, then God rewards you with good health and with lots of money. It's really common, I think, here in America. I feel like it pushes people's buttons to talk about God around health.

Tina Conrad

Mm hmm.

Kathleen Moss

But at the same time, there's there's so much of spirituality that can give us so much trust and an ability to live with the uncertainty that we have to make peace with some way or another. There's so much stress involved um when you're living in the breast cancer community, when you're not turning your back on it, but actually continuing to be there socially in it.

Tina Conrad

Yeah.

Tina Conrad

There's what I would consider people who are just so devout, you know get a recurrence to get metastatic breast cancer and it just doesn't seem fair. you know But I don't think we can think about things maybe it's not like this, in this case, this black and white, where I feel like God loves you through all of it. you know And so um it's just the peace that he provides you know through it. And so like that's that was kind of hard. um I had a ah ah friend you know that um had lost a son who was four years old, and I was really in that, in those days, like struggling with my faith, like, why God would you do this, you know, to this, you know, young child into this family. And it was, it really hurt me. And, um you know, it's just out walking and just kind of asking these questions, you know, like to God, you know, on my walk. And it's hard to like, it was just crazy. But this frog just came out of nowhere and started jumping and like, just being ridiculous, almost to the point where it made me smile and laugh. And I talked to my brother who was like really close friends with this family. He's like, that son loved frogs. like He just loved frogs. And so like to just put a little bit of levity on like a really tough situation, I feel like it's only something, like I can't explain that. like It has to be you know like something greater than greater than this world. And I've just had so many breast cancer sisters you know that I've lost. And it always seems like it's like three days later, I'll see a feather or something that's really reminiscent of like what they meant to me. and And so it's also given me peace you know that that they are someplace where there's you know a message or there's a sign or there's a bit of love or something you know that will help me through a hard time. And so that, I guess, is what my faith means to me, is just the sense of peace, you know even even in really difficult times. um And again, I don't know that it always has to be like four walls of a church, but it's just this relationship and invitation that God, you know I felt cancer provided to me that has helped me through so many experiences, not just cancer, but you know through throughout um the past 11 years, it's been it's just been a relationship with God.

Kathleen Moss

Yeah. Yeah. I'm happy to hear you tell that story. It makes me happy. I know it's it's tricky stuff and every single one of us has a different story to tell with regard to our faith. And you know, some people just get really triggered and really angry about it. But um I'm happy to be able to provide a platform for all of those different stories to be told and mostly just to hold it in mystery because as I get older, I realize how little I know and how little I can know. And it's nice to believe that someday we will understand much more than we do and now.

Tina Conrad

Yeah, yeah I agree. And I think we'll go you know we're all broken here on this earth, I feel. And I feel like there's a place where there's just true love. you know And you know I have not had kids, but I can only imagine like how a parent loves a child. like I do feel like that's how God loves me, you know is unconditionally, no matter my faults, no matter what I do, that I feel like his love you know is is always there. And so I think to go, in my mind as a Christian, I feel like to go to a place where there is just pure love, like that gives me hope, you know, each and every day.

Kathleen Moss

Yeah, definitely. There is a spiritual aspect to the community of sisterhood that we're a part of that I still haven't been able to put words to, but it is really powerful. it is the idea of solidarity of any sort, um coming through a struggle of any sort together with a common understanding side by side, shoulder to shoulder. There's nothing else like it that I've ever experienced and it is truly spiritual. um Is that part of your story and in terms of like how you created your your podcast. I feel like that's why I created my podcast is to transmit some of that out into the airways.

Tina Conrad

Yes, like the sisterhood. Like, it's amazing. um I've met such amazing friends, I've vacationed even with, you know, people who are breast cancer survivors. So, like, it runs deep, like, it's, it's really amazing. um Even when I started my podcast, um I met a great friend, Jen, who lives in New York, we've met, we've become, you know, not, not only like Instagram friends, but like in real life friends. So, I think it's the sisterhood is just it's just amazing. like it's like nothing you've ever experienced. And to have that podcast that I had, you know um to have others share their story and to watch their load just lighten, because for many people is the first time they were sharing their story like on on a public stage you know and so to see that lightning was such a gift you know for me to help, you know, um provide something where they could, they could share and they could talk about it and and they could feel lighter and freer. And then you know to to build this library of of women and then

you know, I know other women's that like are just going through it now and to to be able to say like, hey, I'm here whenever you need to talk. But there's also this like library of of women sharing their stories, you know, in in various episodes that you can listen to it whenever is convenient for you, you know. um and And I do have a lot of people that will go through, you know, each and every episode and or or ones that sound interesting to them or are facing something that they're facing, which is what you're doing, too, is building this like amazing library of voices and stories and you know hope. and And we can all connect with them in in some way or way or manner. And so I think that that's what's such a gift is to share that light and that love you know with others and and to see that support like in action is really important.

Kathleen Moss

Yeah, definitely. I want to talk a little bit about your podcast so people know where to find it. It's called DJ Breast Cancer and you have a hundred episodes now. So a lot, a big library that folks can just binge right through. And like you said, it is mostly women telling the particular part of their story that centers around their diagnosis and how they dealt with that in the aftermath and It's a powerful, powerful podcast and it's it's such a great contribution to the breast cancer community. Thank you for that.

Tina Conrad

Thank you. Yes, the first season was my story. And then I started to share other stories. um And for a time, I was very scared to share metastatic breast cancer survivors. I just felt like it wasn't my voice to be shared. um But I really had met an amazing podcaster, Emily Garnett, who just touched me in my heart in so many ways. um And I just felt like you know she she died in March of 2020, so right as COVID was like starting. She didn't die you know related to COVID. She died you know due to breast cancer. But I just wanted to share their voices. And she she was just very much an advocate of how How can we build a bridge between early you know stages and late stages if we don't talk? you know And so I just wanted to do something to honor her. And so you know I did devote a whole season to metastatic breast cancer. and you know And it's very disheartening, because many of those guests are no longer with us. you know And that was you know just you know several years ago. And it's I think that's what keeps me up at night and makes me want to do more, makes me want to drive research, um because we need more time. We need more options. We need more choices. We need more trials. like All of that is so very important to me. You know, so that we we can honor those women and do more for them. Like, it's not enough. like And so we have to keep pushing the science forward.

Kathleen Moss

Yeah. Is Emily's podcast still available to listen to?

Tina Conrad

I haven't tried lately. I felt like many things kind of had started coming down, but it was called the intersection of cancer in life. Um, and she's just an amazing woman.

Kathleen Moss

As we wrap up, I just want to ask you what I often ask my guests if we have time at the end of each interview, which is what would you tell a newly diagnosed patient that you wish someone had told you?

Tina Conrad

Actually this is something that someone did tell me and it was very helpful, um which is kind of create like a central communication hub. Like it's very exhausting to try to keep up like, Oh, did I text that person? Did I text this one? Did I email, you know, all of this. So my aunt had told me like start a blog, like, or a Caring Bridge kind of site, like they have a free, great site, but it's just a place where everyone can have a way to access your information and it doesn't exhaust you. like Cancer is exhausting enough versus like worrying if everyone's like keeping up. like You have a place, they can go to it, they can find your daily or however ah much you wanna update. um And I think through that, like writing became so important to me um And I encourage everyone to write. There's so many feelings you're going to go through, and I think it's just important to write them out. It doesn't mean you have to share it. like I know we're both very much advocates of wildfire contributing and I encourage you to contribute and to you know do all of that. But if if you're scared or you just you're angry and you want to burn it, like go ahead and burn it. I don't really care. I just think that there's something so powerful about releasing a lot of that feelings and emotions. So there's kind of a practical sense of like sharing your, you know, updates with everyone so it's not exhausting you. But then there's just this beautiful part that comes with it, which is writing. And, you know, for me, it was poetry and rediscovering this love of poetry. I used to write poems when I was like in high school. um and And I just kind of rediscovered it. And and it just, you know, ah it it's just a great way to get in touch with your feelings. And for me, um it's almost then like I'm, I have more control over my feelings because I don't let them have control over me. And so it's this relationship of kind of give and take. And I'm like, okay, I'll sit with you for a day or two. Cause this is really bothering me. It's triggering me in some way, but I'm going to write it down and like, what, what is it? Like, what is really bothering me about this? And so, I try to definitely write it out. I keep a lot of journals, a lot of notes on my phone. um You know, you can just write it on a scrap piece of paper. You know, it doesn't matter, but I think that um writing is just so therapeutic. It's just very, very helpful and I encourage anyone. Again, you don't have to publish something or be this grandiose thing, but it's just very, very powerful to to have it and to even reflect back on things that you wrote from years past. you know So I'm 11 years out and to see things that how raw it was you know when I was going through it, um it's good sometimes to like kind of check back in with yourself and see how far you've come and that and that's great too.

Kathleen Moss

Yeah, the reason this podcast is called a breast cancer diary is that I started a diary video vlogging diary on Instagram and called it that and That was the most healing part of of my whole process. I needed a lot of healing. I was really angry. I didn't like the way that my surgeries turned out and the way that I was being guided by my oncologist initially. So I'm a huge advocate for writing writing things out or sharing, speaking things out. And just recently, I got a brand new appreciation for CaringBridge, which I hadn't really experienced very much but I had a friend with metastatic cancer. um She was in the breast cancer community because she was a pre-vivor when I met her and um had had prophylactic mastectomy but she ended up succumbing to a different type of cancer just this year in October. And she had been writing really regularly on Caring Bridge. And I was supposed to meet up with her in October just a few days after she died. And I had lost touch with her. And I assumed that she probably had passed and was just really longing to connect with her and hear about that that last period. And I could go back and read her entries on Caring Bridge and feel like I was connecting with her and her family through that. So that was a huge gift from her to me as her friend, just to have that closure.

Tina Conrad

Yeah.

Kathleen Moss

So I really, I'm a huge fan of that that technology now. And it yeah, it's wonderful that it is free.

Tina Conrad

Yeah, it's, ah it's beautiful. It's a great gift to your point. that just helps so many. you know like it It helps people through it and process their feelings too. I think people can comment. you know So it's it's a great way for everyone to stay connected in this day and age.

Kathleen Moss

And I'm glad you mentioned your poetry because I know you're contributing a book of poetry to my raffle giveaway that's going on now for the opening of season two. I'm offering for folks that are willing to send me a screenshot of your rating and review of this podcast, um enters your name in the raffle to win some wildfire magazine issues or Tina's poetry, and then some some wearable art as well.

Kathleen Moss

ah So be sure and and rate and review and send me your your screenshot at my email address at kathleenmoss@protonmail.com If you'd like to read some of Tina's poetry, I look forward to sending that out.

Tina Conrad

Thank you.

Kathleen Moss

Yeah, thank you for contributing! All right, well I will hope to talk to you again soon Tina and I hope that you're settling into your new home and really nicely and able to hibernate there this winter, even though you're in Florida.

Tina Conrad

It's such a, it's a different it's a different life, but it's good. It's it's really good. so So yeah, looking forward to um no snow and to, you know, more sunshine.

Kathleen Moss

Good for you. You deserve it.

Tina Conrad

Thank you.

Kathleen Moss

Talk to you later.

Tina Conrad

Thank you.

This episode is an update from my personal story. I had a recurrence scare in November/Dec/January of 2024 and 2025, and this is the way it's sorting itself out. Always something to learn! --Kathleen

Transcript:

Welcome back to season two. Today's episode is episode three of this new season. And as promised last week, I will just be talking about my own story this week. I had a recent recurrence scare and I think it's resolving nicely. It's kind of an interesting non ending that I'm at right now. I really thought that it would be all understood by now, but it's still a little bit of a mystery.

But, um, at least my pathology came back okay, so that's good. And I, uh, Wanted to share this, not because I think it's so interesting or profound, but because I think it's good. You hear a lot of stories of recurrence that don't end well or that end with cancer, and you don't hear a lot of stories of recurrence scares that do end well.

And I think a lot of us keep our recurrence possibilities really silent because we don't want to worry people, and that's a really good intention and probably a good plan, but When we do keep them completely to ourselves, it can really eat away at us. And so I want to encourage people to tell their stories and be open and willing to upset people or worry people.

It's been really hard for me to do so. So I'm not saying it's easy, but I just want to set that example for anyone else out there that struggles with this. I know a lot of us have quite a few recurrent scares in our journey. So it's unfortunately something that happens pretty often for a lot of us.

So I'll tell my story briefly. Started in early November. I had a little lump about half the size of a dime and maybe two times as tall as a dime on my chest right in the center and thankfully it was in a really easily identifiable spot because I had still have a floral tattoo on my chest, and it was right in the center of one of the roses on my chest.

And so I went to see my oncologist. I actually happened to already have an appointment with her set up, so I didn't have to scramble to set one up. And it actually was still there when I got there, and she felt it too. And as the days passed, uh, through mid November, it got a little more tender, a little bit more painful to the touch.

And then suddenly, one day, it was gone. And she did order an ultrasound, but that ultrasound took many weeks to set up. I won't go into all the reasons why, but, uh, it was quite delayed. And before I even got to that ultrasound that she ordered, STAT, in early November, I was ordered an MRI from months prior, just on a regular schedule, to do an every other year MRI for surveillance.

because I still have a little bit of breast tissue, um, possible in my Goldilocks mastectomy side. And so I'm eligible for an every other year MRI, which is nice because I really like the idea of doing surveillance as much as I can. So that came up actually before the ultrasound. I did finally get the ultrasound set up for mid December.

Um, but, um, The MRI came up beforehand and it was in the first week of December and by that time, the lump had completely disappeared. I had no thought of it. I actually never really got worried about it because I've had so many little false alarms on my chest. I've had little bumps and lumps and, um, cysts and, like, Just tiny little skin things that are irritating.

I've just gotten used to having those. I've never had them ever before breast cancer, but I think it's pretty common to have them after. And so I've had so many false alarms that I've just been kind of numbed to them. And so I wasn't worried about it, didn't think a thing of it. I thought I had completely resolved until I got the call from the MRI.

um, assistant, the radiologist assistant saying that there was something on my MRI and they wanted me to come in for an ultrasound. So I said, well, I already have an ultrasound set up. So that's perfect. I don't even have to wait this time. So um, I did have that, assistant person who called me, read me the orders from the radiologist because I knew it would be really hard to get access to that.

And I knew I'd be worried about that. And so that's something I'm really glad that I did. Unfortunately, she didn't read me the whole thing. She summarized it in her own words and got it way wrong. And so, which is a good thing. In the end, it was a blessing because I was a lot less worried. Um, there were actually two areas of concern on that MRI.

One was in my chest wall and one was in a lymph node. So as soon as I heard from her about this, I went and felt for my lymph node, and I felt it right away. It was like the same tender kind of lump that I had felt in my chest, the same feeling had kind of migrated into my underarm. And from then on I felt it just about every day just to kind of keep track of it.

And Pretty soon after that, I did have the ultrasound just a few days later, and so that was good. The radiologist that I go to for my ultrasounds now, is not a part of my hospital system. She has her own private clinic, so she runs her own radiology clinic and imaging center. And so, um, she always does this, which is amazing, but she offered to just go ahead and biopsy.

it with a needle right on the spot, um, because she did see concern. She did, uh, rate it as a BI RADS 4, which is suspicious. She called it a lymph node. She said she would do a little needle biopsy, and I said, No, I really want to wait, talk to my oncologist. I don't want to jump into anything. I think I might want to have the whole lymph node out.

Mostly because I, I've had a history of lobular breast cancer and I know that needles can miss that in biopsies. Um, and then later on I was thinking about it and I thought, oh, I know another reason why I said no. It's because I have a reaction to titanium and I knew she'd leave a titanium clip in,

as a marker, and that would have been a really stressful decision for me on the spot. So it's really good that I had time to think about it. I had time to email back and forth with my oncologist who was on leave at that time. She was on vacation, but she was great at responding to my emails and I decided to have Or to try to have a surgical biopsy, which means you take the whole lymph node out as a whole with an incision, um, small surgery.

And I couldn't find, at first I couldn't find a surgeon that would do that. I talked to one surgeon and her staff and she said no. And then the second surgeon I talked to was my actual first breast cancer surgeon. She had done my first mastectomy and she said yes. So we scheduled it, it was just a week later, it was a week ago.

And a week and two days, a week and three or four days ago from now. And I had to go under anesthesia and it was just really clear. She said she remembered where it was. She didn't even like feel for it to see where it was. She just drew a little line on the edge of my, where my chest meets my underarm.

And she did the incision. And at the end of my surgery she told my husband, I think I got it. I didn't see it, but all I saw was scar tissue, so I wouldn't have seen it. Um, but I believe it was inside. What I did get had to wait a week for pathology and just a couple days ago Pathology came back. I Went in to see her.

I had scheduled an appointment to go over pathology and just before I went in to see her I did peek at my chart, which I am NOT Now, I am regretting that. I'm not thinking that was a good decision and I think in the future I will try really hard not to look at my chart to find my pathology report before sitting in a room with a professional because what it said was no lymphoid tissue detected.

So basically it said nope. We didn't get the lymph node and I was flipping out. I was like, Oh no, I just went through all this surgery. I didn't anesthesia, all this recovery, you know, everything all for the sake of not getting a single thing. We missed it. It's still in there. I showed up to her office just a couple hours later and with that attitude of like, Oh, Dang, let's get an ultrasound and make sure it's still in there.

And she said, Oh, we can't have an ultrasound. Um, you're all inflamed from the surgery. You'll be inflamed for at least a couple months. We'll do it in about three months. And I was like, I can't wait three months to find out if this thing is still in me.

Can you do it a little sooner than that?

She said, yeah, she could do it in two months, but no sooner than two months. So I was like, Oh man. And she said, I really don't think that it's still in there. I think it never was. There never was a lymph node in there. And at first I was like, I mean, It was in there and then it just went away right before surgery because I felt it in there.

And she was like, no, I think it was maybe something else that looked a lot like a lymph node. And, um, just was really, really convincingly looking like a lymph node on both the MRI and ultrasound. And I said, well, all they found was fat and scar tissue on the pathology report. So how could those things be?

And then I showed her my latest ultrasound. which had just happened less than a week prior to surgery. It was just three days prior and it said that I had blood flow detected to the lymph node that they were supposed to take out. And I was like, there's no blood flow. That goes to fat or scar tissue.

Like that doesn't make sense, right? Like, and she couldn't really answer that, but I came out of her office feeling really, really confused. Like my head was just spinning and I knew I should be grateful that pathology said it was benign tissue. There was no cancer. That's the result that I was desperately wanting.

But I, the fact that I couldn't understand the story and the narrative, I couldn't put it together. It was another puzzle that I couldn't solve, was really frustrating to me and I'm sure it would've been to anyone. And so that's kind of where I'm at now. Um, it wasn't as black and white as I thought it would be.

For the first 24 hours after my meeting with her, I was thinking, I'm pretty sure there's still a lymph node in me and we're gonna find it in two months. Um. Then, you know, I went to bed and woke up the next morning and thought, you know, maybe she's right. Maybe there's some other explanation. I need to keep learning.

I need to keep asking people who would know. So my oncologist might know. I'll talk to her about it. I have an appointment with her next week. Talk to other breast cancer survivors. Maybe they've had this weird situation where they had something that looked like a lymph node inside of them. And uh, One of the things I really started to do was kind of blame myself for not getting that titanium marker, which is kind of the protocol for these situations.

You want to mark the lymph node before you take it out. And yet this surgeon had said she didn't need a marker. I was willing to get one when I went in with her, as long as she was willing to also take out the whole lymph node along with the marker. She said she wouldn't even need a marker. That was really reassuring to me at the time, but then I thought, oh man, how stupid was I if I'd only had a titanium marker put in?

I would know if there was still a lymph node in me or not. It would be really clear that either what they took out with the marker was not a lymph node and we thought it was, or they didn't get the marker, so they didn't get the lymph node. Very black and white. This is kind of kicking myself and really appreciating the wisdom of protocol, but Over the days, the last few days, I've had more insight and I think now I'm realizing that I can create the narrative for myself.

I don't know what's true, I may never know what's true, that may really drive me crazy but I can create a narrative of what is the most plausible, the most likely situation in light of the fact that I have a strong body that has incredibly strong markers right now. I'm not. having like high cancer markers or anything like that.

All my inflammation markers have been low prior to surgery. So I have every reason to think that my immune system is strong, my body is strong, and my body is able to fight off anything that would be concerning. So worst case scenario is there was a lymph node that was concerning and it was starting to build a blood supply and that would have been really worth worrying about. Maybe when it started to build the blood supply and my body started to detect what was going on, my immune system came in and zapped it and it was all just necrotic tissue and it just showed up on the pathology report as necrosis and fatty necrosis because it was just that. that my body had killed the lymph node, and it was no longer recognizable as a lymph node.

I don't know if that's even possible, but I definitely will run it by my oncologist. But that's the narrative that I'm going to tell myself, because I can. And because I have nothing else that is Conclusively true, that I can tell myself. Uh, which is so often the case in these situations. You don't get the black and the white, you get the gray.

You get more complexity instead of more simplicity. And that can be frustrating. So that's kind of where I'm at now. I'm still kind of wondering if there's a lymph node in there. I can feel without pain and kind of feel around and I don't feel a lump anymore. So that's part of the reason why I'm thinking maybe it's not.

It is really confusing to think about that. Last ultrasound report saying that there was some blood flow and I would like to talk to my radiologist and I'll get to when I get that next ultrasound. So I will get to pick her brain about that as well, which will be really good. So I'm very fortunate I have access to all the people that have all the information.

Just need a little, wait a little while and get that information. Um, and just be patient. And then I'll maybe have an even more convincing narrative to tell myself. But I just realized, like, this time around, you know, in my mastectomy experience, I had this little journal. It was like a little travel journal that fits in your purse.

And I used that to note all the facts and diagnoses and terms and research that was important to me and my journey and decision making. But I didn't write a narrative in it. I didn't, Tell my story and this time I have a bigger travel journal and I'm calling it my surveillance journal for the rest of my life after the initial occurrence and I'm gonna write in there all the facts and dates and figures and you know diagnoses and terms But I'm also gonna write the story.

I'm gonna write it in my own words I'm gonna write what I believed and what I told myself Um, because I think that is even more important than keeping track of what happened in a clinical sense and a literal biological sense is what did we tell ourselves about what happened? How did it feel? What did I notice?

What were the things that were standing out to me? Because my intuition is the most important intuition in the room and my story matters. Even if it doesn't make the doctors do things differently. In this case, it actually did. My story and my desire to have a whole lymph node dissection through surgery was actually granted.

And that's another part of the story that I'm really glad for because I was heard and people took me seriously and, um, they did things a little out of the ordinary because of my story, because my story mattered to me. So that's something I brought out of this kind of flustering, confusing, um, recurrence scare besides the fact that I'm just grateful that I am a well individual now.

I am not sick as I feared that I would be. And then I've also been kind of struggling with The idea of when these things happen, it's so freaking awkward to like think about who I want to include on my updates every week when I get new information. And I hate putting that email list together. And so this time instead of just assuming that my closest friends and family wanted to be on an update list and putting an email together and forcing it on them like I did in my mastectomy, which I think is pretty fair, This is not a mastectomy, it's a little less intense.

So what I did is I waited for people to hear my story in person from me. And then if they said, keep me updated, I'd say, would you mind if I put you on an email list because I will forget to individually check in with you. There's too many people that want to be updated and I know I'll forget someone.

So if you don't mind, I'll just stick you on that email list and I'm going to write an email update. And they'd always be fine with that. So, over the weeks between November and January, while all this was happening, I added people to that email list. And yet, I still felt a little bit, like, overly verbose, overly worrying them, maybe not having permission to give them all the nitty gritty details.

And so, I've decided that in the future, another approach that I'm going to take is, I'm going to do, like, it's called a Caring Bridge blog it's like a, an online, a free online resource for people who are sick, who just write what's going on with them. And the people who really care, who really do want to know, will either subscribe to that and get a notification each time a new thing is written, or they can just check in when they get worried about that person.

And maybe they won't get worried about that person until they die. But. My insight recently was my friend died. She was down in San Francisco. I was going down to San Francisco. I told her I'm coming. I'm gonna come see you. It doesn't matter if you're sick. She had metastatic cancer. It wasn't breast cancer.

Um, and, and then my email or my text messages started to not getting replies. So like right when I left to go down there, I didn't hear back from her. And then I didn't hear back from her and I thought, oh my god, she's, she died. I know she died, I just feel it. And I chose not to check in with any of my friends who were on Facebook, cause I don't have Facebook on my phone, but, I figured it would be on Facebook but I decided to go ahead and enjoy my trip in San Francisco and wait till I got home and then I would ask a friend who was on Facebook, um, and I think I was in the airport when I asked my friend, have you heard anything about Susanna?

And she said, oh yeah, I'm just checking now and it does say that she passed away a couple weeks ago. Anyway, Susanna had a CaringBridge blog and I had been checking it. I didn't have it set up for notifications, but I did know how to access it. And I'd read a couple of her entries just prior to my leaving town.

And I thought it was such a gift that she made that blog, um, because I could look back as far as I wanted and hear as many details as I wanted about her sickness and her struggle and being in hospital and everything. Um, And I could only, you know, do as much as I want and no more, but it was so nice to hear her whole story from her perspective at the end of her life in a way that was concise and didn't exactly have an end because you never know.

And she got a very intense infection at the last minute. So she didn't really know that she was dying, but I thought it would be nice to be able to leave that. It sounds morbid. It sounds like you're, you know, overly focused on the future maybe, but I think it is. It's kind of a gift, like, so I decided to start a CaringBridge, and I'm not gonna write much in it because not much is going on for me right now, but as I do work on how to resolve the stress that comes with these kinds of things, and I, my guess is that I'm gonna just kind of take my surveillance into my own hands and spend some money that insurance would not reimburse me for, and go to get a diffusion weighted MRI, which is much more specific than a typical MRI.

Or maybe I'll find an amazing liquid biopsy that's actually proven to work. Some of them are showing promise, but a lot of them are just not there yet. So I want to record those things too, because I don't want to be like slammed with a shocking diagnosis the way that a lot of my friends have been. I want to be tuned in to what's going on.

And I think I am to some degree, but It'd be nice to do so biologically and insurance doesn't pay for the things that would really help me do so in a way that would give me a lot of peace of mind. So at least I can track that on my caring bridge blog. And I think Then it won't be quite as shocking for me, and it won't be quite as shocking for others that really care to know what's going on with me medically.

So that's kind of my resolution coming out of this. I'm not saying this because I'm sharing my CaringBridge blog with you. I haven't decided to do that yet. It might be searchable, but right now it's set as private, and I haven't written much on it anyway, so. Uh, if anyone wants to ask me to be added or to be given the invitation, absolutely ask me.

My email address is KathleenMoss at ProtonMail. com. I'd be happy to add you, but I don't know that I'm willing to put myself on a searchable directory or something like that yet, because I'd like to be able to share really, really honestly. And, uh, Um, maybe do so there instead of on Instagram because of the way that the social media networks are headed.

I'm just not as fond of Instagram anymore and certainly not Facebook. So I may just replace some of my deeper sharing and put it in that direction. And that's all I have to share today. Uh, next episode, actually the next two episodes will be interviews because I took this little pause to talk about myself.

I thought I would go ahead and do two interviews in a row next week and the following week. And they're both other breast cancer podcast hosts, uh, Tina Conrad is no longer a host. Her podcast is no longer active, but there are like a hundred episodes. So you can listen to her at DJ breast cancer and Christina Miner is also hosting currently, she still has an active podcast and hers is called Our Scars Speak. So if you're interested in those, um, and want to listen to them in preparation for my next two interviews, uh, go ahead and look those up. They're great podcasts. I've really enjoyed both of them and I will talk to you next Sunday when I'm interviewing Tina.

Talk to you then.

The topic of breast surgery and skin conserving surgery has been a real trigger for me in the past since my first plastic surgeon kept refusing to take the extra skin off of my chest as I requested. The fact that I could talk to Lisa about this without getting emotionally worked up was one good sign--and then I had two other chances to talk publicly about my flat denial story in the past month as well. When it rains it pours!

Transcript:

 Happy New Year and welcome to season two of A Breast Cancer Diary podcast. Last week, I aired my first episode of season two with Lisa Sylvester, founder of the project Still.Me or “STILL project.” She is just now coming out with her new book or two different books, actually the compendium and the anthology of her photography and storytelling project, called "Project Still Me". And the website is project-still.me if you want to look it up, um, it's now available for sale. So on the day of the last podcast episode airing, it was the day before it was available for sale. So if you heard that podcast right away as it aired, you may have been too early to purchase her two different books.

So just want to remind you to go back and do that now if you intended to, those books are ideally for the eyes of patients and surgeons, and we talked a lot about the idea of reaching out to surgeons to help them to understand the second half of the story, the half of our lives that happens after we interact with them.

Uh, a lot of breast cancer survivors have different things that happen, um, whether they explant or go on to really appreciate their new bodies. Their surgeons don't always get to hear about it. So Lisa's mission in this project, which was an amazingly ambitious and talent filled project of mostly photography and, publishing and graphic design,.

This is meant for the eyes of surgeons, especially, and hopefully, we can all come together to partner with these surgeons of ours to get it out in the world and allow them to use it as a tool in their consult rooms prior to surgery. And all of the women in the STILL anthology are, flat. They went flat either after having implants or just straight to flat after a mastectomy.

And so it's just another alternative to the very, strongly pushed option of, of having implants. That's so common right now. Lisa has been working with Kim Bowles from Not Putting on a Shirt and getting connected to a very special conference coming up this spring called ASBRS. It is a special conference that is just for surgeons.

At this time, unlike some of the other breast cancer conferences, They don't allow advocates into this conference, so there's not an open door for advocates or patient advocates, um, to come in and have a voice. So, unfortunately, we flatties won't be able to attend that conference unless we're doctors, um, especially surgeons.

I think, even if you were a doctor and not a surgeon, you probably wouldn't attend that conference. But it is in Vegas this spring, and the hope is that surgeons will be at least open to the idea and will see some of the images in large scale format. Um, they're going to have them in big posters at the conference so that they're hard to miss.

They don't have to walk up to a booth or a table to look at the book. They'll have, they'll see the posters in large scale format and hopefully some surgeons, um, some of them already are big fans of going flat. They can appreciate going flat, but a lot of surgeons are really pushing implants, and there's this kind of common narrative that's going around.

I'm not sure where it started, but, um, there's a belief among surgeons that women are way more, mentally well in the long run if they have implants because their bodies look more like their natural bodies or, the bodies that they had prior to mastectomy. And that is, A really great assumption. I mean, it's a natural assumption that I would agree with if I hadn't been through this, um, and talked to so many women with implants, many women with implants are very, very happy with their implants, but

many women with implants are not and the truth is that many and most of us who are flat are very happy with our new flat bodies. And I actually had a chance to testify to that in person, um, with my knees knocking at the big breast cancer global gathering in San Antonio this last month in December. I wasn't planning to take the mic and talk to a room full of surgeons, but I just happened to stumble into, um, a talk, uh, about a couple of different studies and I didn't realize going in that the studies were about this topic of mental wellness post mastectomy and, with skin sparing and tissue sparing mastectomies being preferable for women's wellness and mental health as the argument.

And I haven't looked at the details or the methods of the two studies mentioned. They were studies out of Japan and the UK, but the outcome of those two studies was arguing for saving as much breast tissue and skin as possible for the sake of, of long term mental health and wellness of women patients.

And that kind of, you know, triggered me a little bit and made me wonder if those studies were well administered or if they were asking leading questions, which, you know, those kinds of studies almost are guaranteed to be doing. If you agree to do that kind of study, you're kind of going in with the expectation that you're going to want to praise your personal doctors who've saved your life and saved you from breast cancer instead of criticizing them and the work that they're doing.

So, It's really hard to be objective as a patient in that kind of study. It's a questionnaire based study, usually, and it's not done personally. It's not done within the context of community, which is where a lot of our body image healing happens in the context of community. But if you're doing a little survey and you're isolated and alone and you haven't had conversations with other survivors about body image issues, then you may not have even broached the question before.

So it's a much deeper issue than what these surgeons were, um, you know, optimistically thinking. And the sweet, sweet man who was presenting the data was just so well intentioned, I couldn't possibly be critical of him. I did wanna tell the other side of the story because he was really arguing for pressing women to save as much breast, tissue and skin as they possibly could.

And so many women do not want to save their breast tissue, number one, because they don't want to fear their cancer coming back in that breast tissue, which is a legitimate fear. Um. And so I got up to the mic and said, I am just one person, but I'm very happy with my flat body.

And I want to tell you that there are a lot of us who are pleased after going flat. There's a lot less anxiety, a lot less fear of recurrence, whether that's legitimate and rational and based on data or not. It's true. And without any breast tissue, I feel lighter and more comfortable in the world. And I.

didn't take long to get used to my body and I'm heterosexual, female presenting, married to a man who is male presenting. And I'm very, very happy with this flat body of mine. And I had to fight for it because my surgeon wasn't willing to give it to me when I asked twice. And the third time I went to a new surgeon and got what I wanted, which was flatness.

And of course, you know, I was super nervous, shaking. I didn't want to stay in that room a minute longer than I had to. And the man that I was addressing was very gracious and kind in his response. His motto was, think twice, cut once. Meaning, think twice about taking that extra tissue and skin and then cut.

And I told him, I would like for you to think twice and ask once and cut once, but asking is really important. And that's something that was not truly done for me and so many of the women that I've talked to that have been denied flatness. So that was a big kind of marker in my life as an advocate and, activist. I was really uncomfortable the rest of the whole day, walking around knowing that some of the people in that dark ballroom that I had spoken up in, probably knew me where I hadn't looked at their faces.

And I felt really uncomfortable in one sense, but also very gratified. in another sense. And actually this last week I had another really amazing opportunity to speak up about my experience of flat denial with my former surgeon, not the plastic surgeon that denied me flatness. That would have been extremely intense.

And emotional for me, but the other surgeon who was in the room, my breast surgeon, who I think knew that I wanted to be flat both times. I'm not 100 percent sure that she knew that because most of my conversation about wanting to be left flat was with my plastic surgeon in a one on one consult with her.

So I wasn't really resentful towards this breast surgeon of mine. But I didn't know if I'd ever have a chance to talk to her in a clinical setting again. Unfortunately, I've had a little recurrent scare, and so I did have a chance to talk to her this last week. And I told her very clearly that I was very unhappy with the outcomes that I was left with on both of my first two surgeries with her and that plastic surgeon.

And I asked her if she still used that plastic surgeon, and she said she did. And so I pressed her to really think about it and I gave her some literature from Not Putting On A Shirt and Stand Tall AFC to point out to that surgeon in particular about how women who say they want to go flat really want to look, we want to look flat without any extra skin.

And so I was very direct with her and kind, and I think I got my point across, and I still trust her enough to go into surgery with her. Uh, this week, I'm going in on Thursday for, uh, a surgical biopsy, uh, for at least one lymph node. I feel another lymph node kind of, you Coming out too, so I may have two lymph nodes that are taken out, but we'll see what comes out of that.

I thought that my own personal breast cancer diary was over, but we may be having some diary entries about my continued experience here soon, both on my YouTube channel, Estrogen Diaries, and here possibly, because I don't want to leave you in the dark about what's going on with my personal diagnosis and my own story as I'm telling other people's stories here.

So the other thing that I talked to Lisa Sylvester about last week in the episode that aired on Sunday was her BRCA2 mutation, and I also wanted to address that. Two, two topics I wanted to talk about today. First was breast surgeons and plastic surgeons in particular. Second one was the BRCA2 mutation because I hadn't had, I don't think I've had it a guest yet that had um, prophylactic mastectomies because of the BRCA2 mutation.

And I talked to Lisa a little bit about her kids and the fact that they would eventually get tested for that same mutation. Just wanted to describe a little bit about what BRCA2 is. There's BRCA1 and BRCA2. They're both mutations in a very good gene. BRCA is not a bad gene, it's a good gene that we all have.

Um, you And if you have a mutation in it, it means that gene is broken. So the, the gene itself is a, a cancer DNA repairing gene. So it repairs the DNA that would lead to cancer or further cancer growth in specific cells. Um, it's kind of a, a self fixing bit of DNA. And that gene is, is a really, really life giving gene.

And for whatever reason, some individuals have developed mutations that can be passed down from father and grandfather, mother and grandmother, and they don't hit everyone. Of course, it's not guaranteed. They're going to be passed down to you if your mother or your grandmother had them. But once you know that someone in your family has had them, it is very wise to get tested these days.

And not everyone, but some individuals who are testing positive for that mutation. So that broken. bit of DNA of genetic, um, machinery do choose to have prophylactic mastectomies, which is a preventative mastectomy, to ensure that they don't ever get breast cancer by taking out all of the breast cells, the breast tissue.

And it also puts your, uh, ovaries at risk of ovarian cancer, that mutation. So some women go as far as having their ovaries removed as well. And that's a really intense and personal decision. Um, it's something we may talk a little bit more about with others who come on the podcast. But for now, I just wanted to define what that mutation is, how it works, uh, why it's a little bit scary and why so many women are sacrificing their breasts because of it.

There have been. Celebrities that have sacrificed their breasts because of this mutation. And I'm sure there are celebrities that have not done so. Because there are plenty of people who have the mutation that have chosen not to give up their anatomy because of it. It's a tough decision. Something that you really should talk to a genetic counselor about because that's what they're trained to talk about.

And probably just a regular mental health therapist would be a good one to talk to you about it as well if you're interested and you're testing positive for BRCA2 or BRCA1. In the future, I'm sure we'll learn about other mutations that are passed down. Germline mutations are what they're called. Um, there are also a different type of mutation that happens inside your particular tumor and your particular cancer cells, um, that are not passed down from your

mother or grandmother, and those are called somatic mutations. So that's pretty confusing and really basic if you're interested in breast cancer science and studying some of the genetic studies that are going on right now. There's so many of them. A lot of why our cancers mutate and develop strength over time.

And come back and recur and develop metastatic strength is because they have that ability to mutate somatically. So within the cell, within the tumor. Um, so it's something that's happening just in that little microenvironment of the cancer. And we don't understand why or how that happens, and we're developing drugs more and more to address each mutation.

which is really, really hopeful. Um, it's amazing how fast we do move considering all of the barriers in place that keep us from moving fast in developing new drugs. I'm always in awe when I'm down in San Antonio at that conference that I went to last month, learning about all of the drugs that are being tested.

in a given point in time. I also learned a lot about, um, a, a really fun study on DCIS that I'm super excited to follow. It's still very, very young in its development. It's only two years old, but they did do preliminary data reporting on it. I'll, I'll do a video on that soon on my estrogen diaries, YouTube channel.

So stay tuned for that. The next guest that I'll have is Tina Conrad from. The podcast called DJ Breast Cancer, and she's no longer running that podcast, but she has lots of episodes and seasons to listen to, and I'm a fan of that one. It's just another storytelling podcast telling individual women's stories in their unique ways and unique perspectives.

So we'll hear from Tina, Her interview is mainly about, um, being a professional with cancer, with breast cancer and staying a business professional with breast cancer. Most of us bow out of our high intensity jobs as breast cancer survivors, but some of us stay with them and she was one that stayed with it.

And I'm just so in awe of that and I wanted to hear more about that part of her story. So she'll be my next guest, but not necessarily next week. I think next week I may do kind of a last minute update about my own cancer recurrence scare and how it turned out. I should know. Um, hopefully I'll know my pathology results by then, and hopefully this will all be behind me, but I can kind of tell the whole story from start to finish, um, in the next episode if there is anything to worry about and tell you my next steps and my plan, uh, just to let you know kind of more personally what my December has been like, it's all been within the month of December that I had an MRI and ultrasound, and now I'm having biopsies, so I will keep you up to date in my personal story in the next episode, I'm hoping, and in the meantime, I will be On, estrogen diaries, making videos about the San Antonio Breast Cancer Symposium.

So, watch that if you're on YouTube. And I will see you in one of those places very soon. Again, Happy New Year and stay well.

My instagram friend, Lisa, had a vision less than a year ago for a visual way to show the how the flat community has become a healing movement for women who don't want the usual reconstruction options post-mastectomy, and this week it is coming out into the breast cancer space as a work of art! I love that I can share the story of a vision come true and share it on the day before the end result comes into the world! Find Lisa's project on her website here: 

https://project-still.me/

Transcript:

Kathleen:

My guest today is Lisa Sylvester. She lives in Richmond, Vermont, and I've been following her on Instagram for probably about a year now. We're fellow Flatties and proud of it. And she's the owner of a company called Interrobang Design. She and her husband run this company. Small business in Vermont, and it's a graphic design studio, and she has a new project coming out of this graphic design business that I'm so excited to talk to her about today. I haven't really dug in with her about it just because I wanted to save the conversation for the podcast. So this is really, truly fresh, new information that I'm super excited to hear about. Welcome Lisa!

Lisa Sylvester:

Hi. Thank you. Well, I'm happy to be here.

K:

You're a previvor. So Tell me a little bit about how you found out about your BRCA2 mutation

L:

Yeah. So I have been having breast cancer and ovarian cancer scares like throughout my adult life and my OBGYN worried about me and at one point she said, you know, what do you think about doing genetic testing just so we can know if we are really have something that we need to be aware of, uh, you know, could inform my healthcare kind of thing.

And I was like, yeah, let's, let's just find out. And I thought it was going to be negative. I don't really have a strong. Um, family history of cancer. In fact, no breast cancer history at all and only one, um, ovarian cancer, um, person in my family. Um, my genetic counselor thought it was going to be negative two.

Um, and so we were all surprised when we came back with a positive for BRCA2. Um, so I'm the first in my family to find out about it. which was the can of worms everybody warns you about with genetic testing because that meant I now had to inform my entire family about this new, new this news.

K:

And how long ago was that?

L:

That was three and a half years ago. And I was pretty, I'm pretty, I'm a research monger. So like when I found out about it, I was like, okay, what are we going to do about this? And I knew what my options were before I had my consultation with my, um, doctor and, and, um, it was my genetic counselor and an oncologist actually, and, um, they were surprised that I wanted a mastectomy.

They actually tried to talk me out of it because they said they're really good at catching cancer early. I thought, well, I don't actually want to catch it. I would rather like nip it in the bud if we can possibly. So I felt like, um, the mastectomy was the right choice for me. Um, and they also pushed implants right at that initial consultation. And I wasn't sure that that was right for me either. And when I told them I was interested in going flat, that set off alarm bells for them as well.

K:

Had you ever met anyone that had had a mastectomy?

L:

Um, so, um, interesting story, when I told my mom about this, she was in her 80s, and my mom is a total caregiver, she likes to help people feel better, uh, but she was, like, had some dementia, and hearing loss, and as I was talking with her, I wasn't sure she really knew what I was saying to her, um, but all of a sudden she got upset It's up and ran outside and started talking with her neighbor who was trimming her shrubs for her.

And she came back in and she said, Suzanne, my neighbor had a double mastectomy and she'd be happy to talk with you. So she didn't know how to me feel better herself, but she knew who to put me in connection with to do that. So she marched me out to the driveway conversation with this woman who I barely knew about mastectomies and she showed me her scars and, and we had a long talk about it and she was the first person I met. in real life that had had a mastectomy. My grandmother, my mother's mother, also had one in her forties, but I was told it was not because of cancer. And I learned from, again, healthcare professionals that back then it was not uncommon for women to have mastectomies for other reasons. Um, so she had a radical bilateral mastectomy and wore prosthetics after that.

K:

When Suzanne showed you her scars, was she flat chested or was she, did she have…?

L:

She was flat chested, but she wore prosthetics.

K:

How did you feel when you saw her scars?

L:

You know, I had been looking around online, so they kind of, I knew a little bit of what to expect and they kind of felt right in line with that. So I wasn't surprised really to see them. It was like confirmation. Maybe it was like, Oh, okay. Yes, this is indeed what this looks like.

K:

And how did you find the flat community for the first time? How long did that take?

L:

Um, it didn't take long. So I first found, um, photos. Of flatties, just on the internet, just random searches um, and then I found not putting on a shirt and actually use their surgeon, um, directory to find a surgeon and, um, and then I think I found the Instagram groups, um, and I was like, wow. Here it is. There's where all the answers are.

Yeah, it was pretty compelling. Because, you know, the, um, the story that we're fed, right, is that, um, women need to have breasts. That women, like, women and breasts go together, right? They're not separatable, if that's a word. But, um, that we can't be whole or healthy or beautiful without them.

And it was those women that I found on, um, Instagram, I told a very, very different story in them. I saw strength and empowerment and beauty and femininity and, um, confidence. And I was like, this is not that trope. This is something very, very different. it was super compelling. And I knew once I saw that, once I found that community, that that going flat was right for me.

K:

Did you find them using hashtags or just, did you stumble upon them accidentally or?

L:

Hashtags.

K:

Mm hmm. And describe for our listeners that haven't experienced this phenomenon. What does it look like? What did you see when you went on to these different accounts and saw photos of women that had gone flat?

L:

I saw an incredible amount of bravery. Um, people that were just sharing their truth with, um, pretense. So it was about showing exactly who they are, showing their bare chests, telling their true stories, um, without doctoring it up to look pretty. It wasn't like the perfect Instagram photo. They were raw and real um, and it was just very, very compelling.

K:

What are some of your favorite accounts that you remember from way back?

L:

Um, so “not in the pink” was one of the first ones—just a fashion icon and what's not to love.

Um, and then, um, I don't, I don't, I'm, I'm really bad at remembering people's handles. So I'm not going to be able to come up with a lot of others. But there were a handful that were sort of, um, very forward, meaning that they were just posting frequently.

So seeing a lot of their, their content and, um, just really really liked what they were saying, um, liked the whole sort of body positivity stance that they were promoting, whether that was intentional or not. Um, it was people that were showing themselves without makeup, like I said, regardless of their size or their shape or else was going on, they were just showing their bodies as they were. And um, there was an honesty there that was just really, really important. Um, moving.

K:

Have you ever met someone from the flat community in person?

L:

Um, so this is actually a good segue into my story… so we have a small group in Vermont, a a small Facebook group, and I had actually met with a Flatty before I had my surgery and it turned out that she was my neighbor's cousin, um, my neighbor's niece. And, um. And I, she was so helpful. We sat and had coffee together in Richmond and, um, she, I, she's like, ask it, ask any question, just whatever you got, throw it at me.

And she was so helpful and, um, really reassuring. And I remember leaving that meeting thinking, holy cow, flat is really flat. Like her chest was so flat. it was startling to me. Um, and then, And then I was like, okay, it's okay. Like it was a little bit of a shock, right? flat, flat was. Then I met some other people from that group.

We try to get together periodically, but we're dispersed throughout all of Vermont. So sometimes it's hard to for us to kind of like, logistically get together, but we've had a couple of, um, you know, get-togethers, maybe a handful of people, but I've like, craved. Wanting to be around other flatties in real life.

Like I've always wanted to have that meeting a “flattie in the wild” experience. that just hasn't happened. And, um, I don't know. It was like last spring I got a from Stand Tall AFC saying, Hey, you should join us for one of our walks. And it struck a chord with me because I was like, I really do like crave this connection with other flatties. I am not a real big, like event person. So like the walk itself didn't really tick any boxes for me. I'm not like some of these big events and retreats, they don't really appeal to me. But, um, but I was really curious about this walk and, and wanting to be around other flatties. So I reached out to this Facebook group in Vermont and. Kind of said, Hey, anybody want to go to Massachusetts three hour car drive for this walk? Um, and I was expecting a no, because we've historically just had hard time gathering people together. somebody was like, yeah, I'll go. So we were off and running. And so me and another woman went down to Massachusetts and did this walk in Lowell, Massachusetts.

And it was super empowering. It was. It's rainy and cold and, you know, we're walking topless for three miles throughout Lowell, Massachusetts. And, um, but, but just beyond all of that, it was just the conversations that we had together and the sort of instant connection that we had with each other that was really beautiful. Um, but it was at the end of that walk where one of them said, you know, I really wish there was a billboard right there in Lowell, Massachusetts, talking about aesthetic plaque closure for breast cancer awareness month. And I think I was just then becoming aware of the work that's needed be done around AFC, around it being offered consistently about it being done well for people. and so that really struck a chord with me when she said that and I thought, well, you know. I don't really have an interest in doing a billboard. We don't have billboards in Vermont. And I kind of like that. And, um, but I'm a designer. So I was like, there's lots of ways that we could create awareness first that apply closure. that's where this whole project started.

K:

Okay, let's get into the project. It's called Still.

L:

It is called still. Yeah.

K:

Tell me about the name.

L:
Yeah. So, I'll give you a little bit of history, um, and how it connects with the studio for us. So, um, we, we do in our studio, what are called “no money fund projects” where we—with other creative colleagues we work with and know and love—usually on a non client based project just for fun. No one gets paid, we get the band together, we do this great project and we create something really beautiful. so my thought was, instead of a billboard, let's do some sort of publication, let's make it a no money fund project. Let's invite my creative colleague friends to see if they would want to be part of it. And um, Yeah, and this publication can be used to create awareness of a stuffed fly closure. That was the idea. There was nothing more to it than that. It's not an especially meaty idea, but it was sticking and kind of nagging at me. And so I put the, put the idea in front of a couple of my friends and I was, again, kind of expecting a no from them. This is a little different from the normal No Money Fund project. It's, It's, you know, it's an advocacy piece. It's a heavier topic. It's personal. I just wasn't sure whether it was going to strike the right chord, but I got an immediate and resounding, let's do it from them. So the next thing was to just, to really start working in fleshing out this project and, and the name was the first part of that. had kicked around a couple other names, which I cannot even remember anymore what they were, but this one just kind of stuck with me. Okay. And, um, it became a working title initially, and then I was like, this, this is it, this is it, because it, that's what this is all about, is showing our truth of how we are still, and, um, in hindsight, five months after the fact, six months after the fact, um, the right name because I cannot tell you how it's resonating with people, both within the breast cancer community and beyond, um, people get, get the idea, get the message.

K:

I love that it's, like when I first saw the word still, I was thinking still photography and then, you know, of course, then you realize as your kind of messaging gets out that you're talking about a different meaning of the word still. It's actually the meaning of remaining, remaining, um, certain things that a woman thinks she might lose when she goes flat.

L:

Yeah, yeah, That's exactly it that we are still ourselves and that's exactly what society and the medical community has told us we won't be right. or that's been the case for for many people. But, yeah, so just stuck and that was that was that so 1 of the 1st things we did, or the 1 of the 1st things that I did to sort of move this project along was to put together a style guide for the photo shoot. to develop the branding for the project and. You know, this is in my wheelhouse, what I do, and I was kicking around different, different ideas and trying out different directions and everything, and the logo that, that is today, um, just was, again, I, I've had this experience with this project where things are just sticking or pestering or poking at me, or just like raising their hand and saying, it's me, it's me, and the logo kind of did the same thing, like that logo, you know. I don't know. It just, it was the right logo for the project.

K:

So tell me how you gathered women the first time you did a photo shoot. I don't know how many photo shoots you've done?

L:

We've only done one and it was, um, it was a little hair raising for me. I'm not a big social media person, but, um, I was working with Christy Raymond at Humankind Casting. And she's STILL’s executive producer and she's got a lot of casting experience. And I was kind of thinking she would just kind of take the reins and go with it. But, um, I had this connection to the community and she's like, you know, really, we should be doing this through your social media. So I was like, okay, here we go. And I was looking for six to twelve flatties for the project. Six was my minimum for getting it off the ground. Eight to twelve was kind of the sweet spot where I felt I could get the diversity that I was looking for. when I thought about this publication. In the hands of a person who's making reconstruction deci decisions in that exam room with their, with their surgeon or physician, want them to see something that they can identify with. So I wanna show women of all ages, sizes, and colors. So as they're flipping through this, they're not seeing what anesthetic closure looks like, but what it looks like on a lot of different people. And, um, so that again, they can identify it with it. And when I think about like the hope that this project can provide. It lies there because when you, you know, when you're going through something difficult like that and you're on, uh, you're feeling pressured to make decisions, there might be a timeline that's factoring into it, it's big and scary, um, finding that one thread of hope that you can grasp onto can mean the world, right? So eight to 12 was kind of where we were going. And again, we just did the casting through Instagram and Facebook.

We ended up getting, I'll add that it was, um, we were shooting in Worcester, Massachusetts. We had this gorgeous studio that gave their space to us for the shoot. And so I was expecting a local response because again, it's a no money fund project, so people would have to be able to get to the studio and to the shoot on their own means. And, um, So I was expecting local and I'm like, I don't know how many flatties there are near Worcester, Massachusetts. Like, what's this gonna, how's this gonna work? We got an international response. We

K:

Oh my goodness.

L:

All over the country, all corners of the country, and as far away as Europe that submitted casting submissions for this project.

K:

Wow. I recognized Farhana from Texas and I saw Linda from Massachusetts, so I didn't know how far it went, but that's crazy.

L:

It is crazy. We have, um, we have someone from San Francisco. We have two from Texas. We have Florida, Michigan, Illinois, Pennsylvania, uh, Massachusetts, Connecticut, and Vermont. Yeah.

K:

Was it a one day shoot then, or?

L:

A one day shoot and shooting 12 people in one day is a big, a big task, getting them through wardrobe and hair and makeup, having their photo sessions. And then the other piece of that day was that we actually interviewed them. So, um, they were interviewed after their photo sessions and those interviews became the foundation for the text for the book.

K:

Mm hmm. Is it a text heavy book?

L:

It is not. So, um, a photo heavy book. The, so the photos are. I can't wait for photo for people to see these photos. photographer is an internationally published fashion photographer, and his eye, his vision is just incredible. We're, I was just so thrilled that he said yes to doing this project. And so when we were casting, we had asked people, what, what are your top three still phrases? How, what are your top How are you still yourself? And so everybody has their still phrase. And then what we did was we had them work with our wardrobe stylist who put together looks that exemplified those phrases. then when they got on set, we actually had a huge piece of Plexi with the still logo printed on it. And then we had people actually paint their words on the Plexi, um, to complete their still phrases. And then, uh, so we had, know, we had these people who, who had their, um, The sprays that really resonated with them, right? They're painting it. They're wearing a look that complements that and then we're taking pictures that just really pull all of that out. So when you, for example, um, we have a flatty Emily from San Francisco who is still fierce and if you can just take a glance at that photo and get fierce from it, like those messages just come through so beautifully in the photos. So the text is, really You know, you marry a compelling story with a compelling photo, and then you've got a sort of a powerhouse of a, of a communication happening, right? Um, and these stories, so we ended up doing two, two publications. Um, it, when we saw the stories and the photos, we realized this needed to be more than just this little booklet that I was envisioning. we did, we designed a 132 page art book, basically. Um, called the still anthology that shares more of their story and in their own voices. So it's not heavily edited. It's very much their own voice, um, and it shares the good bad and the beautiful and they're very real. and then in the compendium, which is the smaller booklet, that's a 36 page booklet.

That's the book that's for healthcare providers. that book is, um, even lighter text. So we've, um, really focused that text to be about like what influenced people's decisions to go flat, what that transition was like for them, what challenges they had around going flat and what, what life is like for them as a flattie. so, um, so it's more of a synopsis in that piece.

K:

Okay. Are you planning to sell the anthology as a way to raise money to print the booklets? Yes.

L:

We are so, um, yeah, so this will all be launched on January 6th. We have a store that's going up on the still website. We'll be selling the anthology and the compendium and digital downloads for the compendium. And, um, what we're doing for healthcare providers is we're offering the compendium, um, at no cost for the digital download and printed, um, copies at cost.

So, um, if they wanted to buy, you know, a stable of, of compendiums to hand out to their, um, patients, we can get those copies to them. at a discount. Um, yeah, yeah. And the, and because this is, this project isn't, isn't about making money, the any proceeds that we make from selling these books is really just to cover our out of pocket expenses.

K:

Cool. And it's a black and white project. So that makes it easy to print out in black and white.

L:

Well, the photos are black and white, but the book is not black and white.

K:

So when you give a physician a digital download, do you picture them printing it in their office?

L:

So what I wanted to do was really just make this as accessible as possible and remove as many barriers as possible for people to actually use this. um, the reason why we're providing a digital download is because we can just give it to people, right? And they can spread it however they want and they can either share a QR code or, um, to their patients for them to download it themselves.

They might want to have a handful of copies that they just have in the office for people to look through there. they can, they can manage it any way they want to depending on how their practice works. Um, so really, like I said, just trying to remove as many barriers and make it accessible to them to be able to get to it and actually use it and share it.

K:

And then the big question, how much energy and what kind of strategy do you have around getting physicians to actually use this tool?

L:

So, you know, that was the big question. I was like, I am a designer. I don't really know how to do it. Like, this project has been, like, has pushed me out of my comfort zone so many times, like, over and over and over again. And, um, You know, the pathway is just opening up. So, like, if I'm patient and ask the right questions and all of that, I'm getting the answers that I need to move forward. with distribution, you know, I was thinking it was going to be largely grassroots, like, we would get this into the hands of the flatties that I'm connected with through through social media and ask them to take this to their physicians and start spreading the word that way. That was about as far as I got with it.

Um, and that's happening. I already have people like saying, Hey, can you, me know when this is ready. I'm going to take it to my doctor. Like people are lining up to do that. I have physicians that are hearing about this, that are saying that, yes, I want this in my office, let me know when it's ready. And then, um, can I share some top secret news?

K:

Yeah, please.

L:

So, uh, we have been invited by the ASBRS, the American Society of Breast Surgeons, to exhibit at their annual conference in Las Vegas in the spring. So this is going to put this book in front of 1, 700 breast surgeons.

K:

Wow. Are the ladies in the book going to be there?

L:

Well, we've got all kinds of things in the works for this, for this event, and none of them have been formulated yet, but I wouldn't, I wouldn't be surprised if some of them came. Yeah.

K:

I would. Yeah, that's so exciting. Oh, I just want to say right now, thank you. That is, I mean, it's one thing to have a beautiful book full of photos as a flatty post surgery, but to imagine The possibility that I could have had that book in my hands pre surgery... It is such a gift. It is so important and so rare and it takes a lot of forethought and those professional skills that you've gathered, those professional people that you've gathered in order to carry that off well. So thank you so much for that.

L:

My pleasure. This has been a real joy to work on because, obviously, that personal connection, right? Have I found out about AFC on my own. I cannot tell you how many people have come up to me and said, I had to find this on myself, it shouldn't be this hard, or I was talked out of this, or I was told. two weeks ago, someone told me that, um, they're, they were interested in going flat, and their surgeon said no because, um, studies show that the outcome for women is better if they have reconstruction. Meaning implants or flap surgeries. And you know, that's, that's part of the problem. That's part of the problem, right?

So I've been talking a lot with, um, Kim Bowles, not putting on a shirt and she's showed me studies and everything. And there are actually studies that conclude that it's psychologically harmful for a woman not to have breasts. There are other studies that disprove that but that thinking persists, right?

And obviously I kept, when, when that woman told me that, I was like, okay. That's a surgeon who's still thinking about that old study, or still stuck in thinking about that old trope that we're fighting against. Um, because the truth is different. Um, what we've experienced is different. And that's not to say it's this way for everybody. I know that there are women that go flat and then decide to, um, get implants later, or do flap surgeries later. There's no one right way, and I'm not pushing aesthetic block closure as the thing to do. But what I'm pushing is It's being given the option. So even if somebody gets this book and they look at this and they see these beautiful photos and they read these compelling stories they decide that flat is not for them, that's great because even then we have helped them see all the options and make an informed choice.

The STILL statements that the models have made really apply to most women who have had mastectomies. They have the same kind of insecurities, regardless about whether they are going to still be in a certain way or fully feminine and all the ways that they see themselves before surgery.

K:

So I think the message is still really powerful. It's a little bit more stark, maybe, um, being that the women, the models are breastless, but the messaging is very poignant and meaningful, I think, for all of us.

L:

Right. And that's what I mean, like this is resonating with people outside the breast cancer community because anybody who has been through a significant challenge like breast cancer or these big surgeries. Right. There is that concern, like how, what's my life going to be like afterwards? So what am I going to look like?

Am I still going to be me? And so that, that, that thought that you are still, um, after going through hard things is incredibly empowering.

K:

Definitely. Yeah. I feel like I've been tabling this last October, September, October for a stand tall AFC. And for the first time, I've been engaging with women who have implants, but had never even contemplated going flat and weren't given that option. And I would say a good number of them are perplexed by The idea of going flat, um, and then there's also a great number that I'm surprised each time that have implants and are very unhappy with them, not just because they're sick, like typical kind of breast implant illness kind of symptoms, but they just don't feel themselves anymore.

And they're desperately looking for an excuse to solve that problem. And I never imagined, I mean, I had so many reasons to go flat. And I had so many physicians telling me I, I should just get implants, but I, I'd never entertained the idea of implants. I always knew I was going to go flat myself, but I thought I would feel disfigured afterward.

And to be able to tell these women that going flat and feeling themselves will not also include that necessarily that stigma or that belief that you are not whole or you're disfigured I just love being able to share that message with all my heart, you know, it's just, it's such a big truth. Um, I think it's, it's not a natural truth. You wouldn't naturally assume it if you were sitting alone without exposure to other women that have gone through it, but it's so important.

L:

You’re making me feel like, so anxious to get this book out here because these, these, these exact things that you're talking about are spoken about in this book, like this idea of like, like one, one young woman. So I have like, an incredible age range. So our youngest in the book is 31 and our oldest is 70 and, you know, it's different.

Like, I went through this in my late fifties. I had already had my kids. They were out of the nest. Um, So my considerations were very different than somebody who's in their 30s who might be a family, right? And, um, so anyways, like, we have a young woman who was planning a family and, um, she was very, she's very athletic and she, she says, I thought I was going to be like a Frankenstein. Um, so the people, exact, are actually really beautifully voiced in this, in this book about implants, about how am I going to look, am I going to hate myself, am I going to, am I ever going to adjust to this, and how do I adjust to this, and all of that is captured in these 12 stories.

K:

How did you pick the women? I imagine you had a lot to pick from.

L:

We did. So, um, so again, I was diversity that I was looking for. So I was looking for that, that really lovely cross section. The one thing that we did not do that. If we do this again, I should say, when we do this again um, I didn't really ask for their stories about, you know, how they got to be, to be flatties. So I had asked whether they were survivors or previvors. I'm trying to remember what else I asked them, but, but we didn't ask for any specifics about their, their journey in that respect. So when we got to the interviews and, um, and afterwards we were reading them, I was like, wow, these are all like, everybody's got a different takeaway.

Like it's really amazing. And actually, my daughter, my youngest daughter, Nora, she's, she's, she's led the interviews and is doing the copywriting for the book. And, um, she, she said, boy, mom, you and Christie did a like really amazing job, like casting these 12 people. They're so different. Like divine intervention right there.

Like, I don't know, even know how that happened because, um, it was really, truly luck of the draw from that perspective. But we were looking at things from an aesthetic standpoint. Like I wanted people with different hair, like I didn't want all blonde people. I want it like to be different hair colors and different haircuts and different body sizes and types and different, even different scar types.

Like, you know, some different scars heal differently on different people. So we wanted to show like, what does the. Thin line, you know, incision scar look like versus a keloid scar. Um, so wanting to be able to show those differences as well. So we were looking at more of those sort of differences. visual nuances when we were selecting than we were story.

K:

But it came out that the stories were diverse, too.

Not only were they diverse, so they, they, their commonalities for sure between them, you know, several of them, but their takeaways are all really unique and really compelling.

K:

So you said you're maybe going to do this again. What is that going to look like?

L:

Uh, well that's, that's to be determined, but like it just has become clear to me that this is not a one and done project. Um, so the, I have. I've been getting a lot of feedback from people in the breast cancer and flat community about the project. you know, comments about things that I've posted or messages that people have sent me. And it has been 100 percent positive. for one. So 99. 9 percent positive. person told me that they were frustrated that they couldn't get to the photo shoot because they were, they were, um, they had some health concerns and they had some financial limitations that prevented them from being able to come to the shoot. And so it was an accessibility issue and, um, they said, you know, my story is, deserves to be told. The truth of the matter is we cannot tell every story. There's no way we can, we could do that, which is again, by that diversity is, is important, is but, um, but we've only told 12 stories and. I think there's, there's more to share out there. So I'm, I'm seeing this as volume one, what we're working on right now, and volume two will come down the road. And I'm not sure what that's going to look like. we've talked about the idea of maybe even getting surgeons involved in the project to, to actually show, show a surgeon and a patient. I, I don't know how we get around HIPAA and all of that, but like, we'll figure that out. like to, because one of the things that I heard, um, Is that surgeons don't see this. They do their surgeries and they move on and they don't see what life is like for people afterwards. Um, they, they know what the studies say.

They know, um, tidbits that they hear from people, but for them to actually, like when I was talking to ASBRS about this project, you know, they were like, we don't see this. This is really interesting for us, us to see. And wouldn't it be interesting for the surgeons to be telling their side of the story as well. Um, so, so I thought, I thought that's interesting. So we're gonna put that in our back pocket for now because I don't have the bandwidth to take that on. But like, so something like that, but but it could also just be a very different to the book from a visual standpoint. It could be. focus, we could broaden it to include other reconstruction. I'm not sure. I'm open to anything right now, but right now it's a flat advocacy piece and a flat advocacy project. So whatever we do is going to stay rooted in that. We'll just have to see what path opens up for a volume two when we get there.

K:

Do you have a dream of making any of the STILL shots, uh, a billboard? You were talking about billboards….

L:

Not a billboard, but we are doing a poster show—a traveling poster exhibit. So there will be 12 international size posters, which is about 36 by 50 inches of each of the flatties and there's going to be a video companion piece that goes with that and we're going to be working to get that into galleries and museums around the United States.

So, so that's going to be If you think of it in two parts, like, or if you think of like the mission of STILL, creating awareness of aesthetic flat closure and promoting body positivity and flat visibility, um, the books do do all of that, but I think the posters do it from a completely different perspective and are gonna hit a completely different range of audience. Um, and that's where I feel like that, that normalizing flat and the body positivity and the flat visibility, those pieces are really gonna be You know, accessed through this poster show.

K:

And what kinds of galleries and museums are you targeting for that?

L:

I again, I'm, I'm open to whatever, whatever. We're just going to, we're going to start, I think, focusing on New York and Boston just because we're too busy. East Coast right now and see where we can get it from there. so I'm very much focused on getting the books released on January 6th right now, and then once that's, those are out and about then I can, um, shift more, more of my energy towards getting these posters exhibited.

K:

Great. Yeah. Hopefully listeners will have connections for galleries and museums that they can turn you on to. That would be great. Are the posters pretty durable? Are they like vinyl or cloth or what are they made of?

L:

I think I'm going to print them on canvas. I still need to do some research about what's going to be best. I'm thinking about like what's going to travel best, what's going to pack best, all those sort of nuances about putting a show like this together. So there's a lot of logistics and little details to take care of that on the sort of functional side of things that are beyond the, um, you know, what does this look like and what did these posters actually communicate and say to people?

K:

That's great that you have all the participants from so far and wide, too, because they can do a little bit of promotion locally for their own communities, too.

L:

Yeah. Yeah. And we have a, we have a PR person on our creative team, so she's, she can help with that as well. And yeah, we're just going to work our networks and see what we can dig up.

K:

So fun! That's great! Wow. Well, I wanted to ask you a little bit more about your personal story. We talked about the fact that you have two daughters. I don’t know if they're grown daughters or teen daughters, but tell me a little bit about how you worked through with them whether or not to get tested for the BRCA2 mutation.

L:

When I first found out, you know, they flood you with information about what to share. I got a packet from my genetic counselor that had all the information and all the results and multiple copies of it that I could just parse out and, and send to family members and everything, which we did. And um, so I have a son and two daughters and we let them all know that, that this is a thing in our family and that they can get tested if they want to. And um, And, um, my older daughter, she's 28, she just, she did, she got tested right away because she was at that age where if she was positive, she would have started, um, screening at that age, and she thankfully was, was negative, so that's great.

My youngest daughter is 24 and she is waiting until next year to test because again that's when she would start screening if she's positive but, um, and then my son is holding because for him, he would, you know, the big, the biggest concern with him is prostate cancer and protocol right now is that they would start screening for that when he's 40 and he's just turned 31. He'll be 31 this week. So he's, he's on hold right now. Plus he was like going through a move and a big job change at the time. So it just wasn't the right time for him. But, so two kids have not tested yet. One has, and I've just been really open about my, my own, um, thinking about all of this and why I've made the decisions that I've made and understanding that they are going to make their own decisions and that's fine. But lets just share the information, right, and be very open about it and so that they can feel comfortable asking questions or, I don't know, just, there's no need to be closed about this. Let's just share what we know and share what our experiences are and, and then support each other through whatever decisions we, we choose to make individually. But my daughters, you know, they saw me go through this mastectomy and my youngest actually came—none of the kids live in Vermont anymore, so one's in New York City, one's in Boston, and my son's out in Seattle. When I had my mastectomy, my daughter who lives in Boston, my youngest, came to visit me and everything, so she saw, she saw what you go through after mastectomy and, and all of that, and you know, and she's, she's told me, you know, if I brought a positive, I'm probably going to do the same thing that you did, so, like, for me, it's about being a role model for my kids, and, and that's, and being a role model is not about making it all look easeful and pretty, it's about showing how it really is, and being honest about it, and being vulnerable. And so that's what I've been trying to do, do with them. And so when they said, when I told them about STILL, this project and this photo shoot, they were like, “we want to be there.” And I was like, great, I'm putting you to work because like, again, this is a big task to get 12 people through this process in one day. You know, there are a lot of places where things could get tripped up. And so having extra hands just made sense. Nora is, uh, she had just graduated from Mount Holyoke college with an English degree. She was the perfect person to do these interviews and do this writing. Hannah is, um, she manages a restaurant in Times Square and she's got a hospitality background. So she, that's what she did. She kind of was our hospitality director and just made sure that all the flatties felt comfortable and safe on set.

I realized that I was bringing in 12 people, well 11, and myself, who had been through some pretty traumatic things and I wanted, I realized that the very photo shoot itself could bring up big feelings and so I wanted to make sure everyone felt safe on set and comfortable on set. We put together this community agreement that outlined like, should something not go well, like should something be said that feels harmful to you, or should, should something make you feel uncomfortable, this is how we're going to approach it, and this is what we're not going to tolerate, and this is how we're going to do things, so it was all kind of spelled out ahead of time. That community agreement was included in our photo release that we sent out and had everybody sign, cast and crew signed it. So everybody was on the same page. So Hannah was really there just to make sure, like, people were okay and felt good and work were doing well. And, um, and then she ended up sort of doing double duty and doing some photo assistant work while on set too, because it was, it was a very busy, bustling day.

K:

Has your daughter dealt well with the kind of anticipation of waiting a year and wondering What the future will look like?

L:

I think so. You know, I think for her, um, it just she has clarity about what she would do if she was positive. And, um, so I think she has, I don't, I don't sense that there's fear there. I'm sure she'll be happy to know and just know one way or the other. Um, but she, but I don't, I'm not sensing any sense of, uh, and in the way at this point.

K:

Luckily it's something you can get paid for pretty easily now, so,

L:

Yep. Yep. So that's all good. I think I think we're okay there for the time being. We'll just take it as it comes. Right? That's the best we can do, it was good to have them at the shoot and not only that they see, I mean they know my story,

After my surgery, when I was first able to take off those bandages, the drains are out, you're finally feeling human again. um, I remember thinking that I was really going to want to wear prosthetics. And so I was really eager to get my prescription to go to the place and get my real prosthetic. Athleta sells these really nice, it has a really nice, um, mastectomy bra and really inexpensive inserts. So I bought a set of A cups through D cups to just explore and see what I would want to wear.

And so I remember after my surgery, my daughters were visiting and we were trying on all these foobs. Like, it was, it was just so fascinating to me that how, like, not me they were, they were just, um, they felt awkward. I was like, I didn't like, do I have them in the right place? Like, is it supposed to be up higher or further? Like I can't tell, this doesn't look right. um, so we ended up wearing them as shoulder pads and butt pads and we're just like playing with them and stuff. But like, and we never, I've never, ever worn them. I'll donate them to somebody, but like, um, just became really apparent that I'm flat now.

That's who I am. And, and I don't need to put things in my shirt to do that. That felt almost dishonest to me. Like I'm not being myself. I'm not being true to who I am by wearing prosthetics. That's me. Everybody has their own feelings about that. But, um, but that's where I was. But boy, did we have fun playing with them.

K:

Aww, I love that. Yeah, I feel exactly the same. Even as a uni, I had, for nine months, I had a single double D breast. And I always just longed to be free of that prosthetic. Um, I did get used to using it, but I never felt good in it. And I felt so much better when I had my second mastectomy. And I did have those, those, those Athleta inserts I never wore. I got A's and D's because I thought D's would be matching my natural size. Never wore any of them out of the house. It was just so not okay with me.

L:

Yeah. It's, it was startling to me because I was so sure that's what I was going to want. And it really just, it didn't resonate at all with me after the fact. So, um,

K:

Well, we're getting low on time, but I want to ask you one more thing. You mentioned the dynamic of having all 12 of those women in the photo shoot. And I, I regularly volunteer with Daniel Rogers here in Oregon that does photo shoots with survivors and mainly flatties. And she intentionally has women come together two and three women at a time for a photo shoot because she believes that the power of
that experience as a shared experience is really, um, healing in itself. Like it's, it makes the photos more beautiful and joyful. So do you have any magical moments to share about the dynamic that was created that day?

L:

Oh boy, let me tell you. Um. That day rendered me speechless for weeks afterwards, um, literally could not form words or sentences to describe what happened on that set. So the night before the shoot, um, we loaded into the studio, we got the set put together, we did some test shots, things like that. then we did a meet and greet, we had the Flatties come that evening.

Not everybody could come, but most of them did. And it was the first time that we had been together. Many of these people I hadn't known on social media, but never had met in person. And, um, and some of them I hadn't known at all. And the moment they set foot in that studio, I knew them. It's like we knew each other.

We were connected. We were bonded. We were family of the best kind. And it was not like anything I've ever experienced before. It was profound. Um, it was it, and it, and it wasn't just the flatties, like the whole crew felt it too. Like it was just, that studio just with love and compassion and joy. so that shoot was not about trauma or loss at all. It was about joy and positivity and love. Um, you know, it was a long day. We were, we were shooting for You know, close to 12 hours maybe. And, um, there's a lot of downtime and they could have just been sitting around or they could have left or come back or, know, whatever.

But basically there was just this little huddle of flatties that stood at the opening of the set that were just cheering on whoever was having their session at the time. it was loud and it was joyful. And it was just, I don't know, I, I've not experienced anything like it. And I, and I imagine this is what people feel. People experience when they do go to these retreats and other camps and events and I had not experienced that before. Like I said, I'm not kidding. I was rendered speechless. I was, I was a mess. I cried for three weeks afterwards!

And, and, um, to put it in a little bit of perspective, My, my executive producer and photographer have been in this industry for 35 years, and they've worked with really incredible clients over those years. And they said at the end of the shoot that this was the best shoot for their careers. That says something.

That's, that tells you how impactful that day was. So the shoot, which was just meant to be a means to an end, to get these images and stories, to create these publications, shoot itself became a thing.

K:

Powerful. Yeah. I imagine that just having Lynda there, she's been to so many flat gatherings in person and experienced so much love and given so much love and that kind of experience just travels with you and it just continues to be imparted, you know, wherever you go, I think. And that's the wonderful thing about the flat community. It's, it's such a safe and affirming place to be. And it's so important to see each other in person for that reason. Wow.

L:

Yeah. Someone had their first flat hug with another flattie. Um, someone took their shirt off in front of other people for the first time. Um, one person left and said they threw out their prosthetics because they felt so loved and so confident after going through that experience that it changed their mind about wearing prosthetics. So it was profound. I don't have another word for it. It was just, it was life changing. It was beautiful.

K:

Oh, I love it. I'm so glad you did that. It's it's great to hear about all of the photography, um, experiments and projects that are happening all over for all kinds of breast cancer survivors and just how healing they are.

L:

Yeah. And what I love about, about these is that, I mean, obviously there are a lot of beautiful professional photos out there of flatties. Um, I feel like these strike a different chord there. Um, I think they're going to feel fresh to people. I hope they will. I think they will. They're very, they're very stunning and compelling.

Um, don't know something about the black and white. That's really striking. Um, I'll be curious to see what you're going to think when you see it.

K:

Yeah, well, share, share all the information with us. Tell us your handles. And then also, most importantly, how can we get a book

L:

Yeah. So the best place to follow this project is on Instagram at project still me. so I'm at, so this is flat and I started. of started talking about the project there and it's become such a thing it grew up and got its own Instagram. So project still me is, um, the Instagram handle. And then, um, the website is project hyphen still dot me. um, we're going to be launching a store on the site on January 6th and the books in all their versions. So the printed versions of the anthology and both the print and the digital downloads of the compendium will be available on the, on the website on January 6th.

K:

Do you know how much the compendiums will cost?

L:

The anthology is $40. The compendium is $15. (Corrected post interview!)

K:

Well, we'll be lining up and getting some for each of our booths at the Sand Hall walks.

L:

Yeah. That's the other thing we're trying. We're, we're, we've got a couple of organizations that are going to promote or offer links to this work through their sites and things like that too. So, where I think it's going to be a many, many hands make light work situation where we'll just tackle this from all kinds of angles and get this into the hands of the people that can make a difference.

K:

What are the names of those organizations?

L:

Well, not putting on a shirt is one of them. So Kim's been a super ally, great friend. She's just been so amazing and, um, and sharing information with me. And, um, and so they're going to be putting this on, on their website as well, and we'll see where else there's another, there's a magazine in Texas that is interested in 50 top cancer centers that they send their magazine to quarterly. we're looking for opportunities like that. And just, um, You know, just different, different ways and angles to get this into the hands of people are consulting with, um, women about reconstruction options.

K:

Thanks again, Lisa. This is such a great gift and I can't wait to hear what comes next for you in this area.

L:

Thank you. Thanks for the opportunity to share about it.

I'm jumping in here with a quick holiday tip in between seasons. I highly recommend "After Breast Cancer Diagnosis" if you're in need of a mentor... or if you're feeling ready to offer a mentoring ear to a newer patient. Find them at https://abcdbreastcancersupport.org .

Transcript:

I'm checking in today in between seasons because it is the holidays, and the holidays can be a pretty stressful time of year on a normal year, and this being an election year, it's extra stressful for some of us. And I wanted to share a resource. I am not affiliated with this resource except for the fact that I found my mentor through them.

If you're struggling and you need a breast cancer mentor, encouragement around your breast cancer story and just someone to talk to one-on-one, I recommend going to an organization called After Breast Cancer Diagnosis. Their website is https://abcdbreastcancersupport.org. And that's where I found my mentor.

They are incredibly responsive and very personalized in their approach to matching breast cancer patients with mentors. And at the time a couple of years ago when I went to them for help, they got me matched up with someone just like what I asked for right away, someone with my same diagnosis and someone with my same interests and advocacy.

And so if you're really struggling, ah especially around triggers with regard to your breast cancer trauma, I just wanted to recommend this if you need it.

I will be back in January with season two, and I have some great guests lined up for that season. And I hope you have a wonderful holiday season in the meantime. I'll talk to you soon.

Last week's interview with my fellow advocate Leslie brought up a few things that make Metastatic Breast Cancer Unique. In today's episode I'll reflect on things like "lines of treatment," "progression" and "dormancy" when it comes to mets and I'll also talk about some of the ways that science is progressing for metastatic Lobular Breast Cancer patients. 

Don't forget to rate and review the show and if you want to enter for a prize for doing so, email a screenshot of your review to me at kathleenmoss@protonmail.com

Listen and Subscribe on: APPLE PODCASTS - SPOTIFY - AMAZON

Or watch on YouTube: https://youtu.be/agbu6QjDiXs

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This episode has not been transcripted. 

My friend and fellow lobular breast cancer awareness advocate, Leslie Pifer-Pien joined me on the podcast this week to talk about her first seven years as a metastatic invasive lobular breast cancer patient. Leslie was diagnosed de-novo, which means, she didn't start with the mild kind of cancer but went straight to stage four, or "metastatic" cancer. She's taken it in stride, but finding the right oncologist isn't easy with Lobular Carcinoma. Lisen in as we chat about all that she's learned.  

Transcript:

K:

My guest today is my friend and local advocate, Leslie Pifer-Pien, who lives in Camas, Washington. She was diagnosed in May of 2017 with de novo metastatic breast cancer—lobular breast cancer. And she has a history of working as an electrical engineer as well as a college professor here in the Portland area with exchange students.

Leslie and I just met about a year ago, and we worked together on the local advocacy teams with the Lobular Breast Cancer Alliance as local advocates, meant to be working in person together. But most of our contacts have been online still, but we did meet on national or global Lobular Awareness Day a couple of weeks ago for the first time in person. And that's when Leslie agreed to come on the podcast.

Leslie is my first guest who is a metastatic breast cancer patient. I've been trying so hard to get my various friends who are metastatic to come on and they have all tried, but things have come up and gotten in the way. And I'm sure I'll have many more guests who are metastatic, but it's really important to me to feature the stories of patients who are metastatic because we just don't hear their stories often enough in the breast cancer community and I just feel that they are so, so very important. So thank you, Leslie. It is a vulnerable act to come on and speak about this journey. And I know you have a very unique one to share about. So thank you so much for being here. It means a lot to me.

L:
You're welcome. Thank you as well.

K:
Well, I wanted to ask you a little bit about your experience of discovering, without the medical professionals discovering, that you had breast cancer. And I know this was, not a typical way of discovering and I know that you're a spiritual person and I love to talk about spirituality on the podcast.
So I'd love for you to tell the wild and crazy story of how you came to suspect that you had breast cancer.

L:
Wow. Thank you. Because it's still a surprising story to me now, seven plus years later! I had gone for a mammogram like everyone else and I was called back, which wasn't surprising. I knew I had dense breasts. My sisters get called back. So they did a call back and they said, Oh, it's perfect. Everything's fine. And I got my piece of paper saying normal mammogram results. But then I had this experience that I, I don't know quite how to explain. Every day I'd go in the shower and this voice would come to me and say, “you have breast cancer… but on the right hand side” and it would, I would listen to it for the 15 minutes I was in the shower. I’d forget about it. And the next day would happen again. And then all of a sudden, five, six, seven days, I'm like, my goodness, the same thing is happening over and over again. I think you might need to listen! And having a scientific background, like you said, I had been an engineer originally.

I was looking for others to validate it. So I showed anyone who was willing to look at my breast. “Do you see anything? Is there any reason I should have breast cancer?” And everyone would look, I seemed like I, I was kind of crazy, like, no, there's nothing wrong. But I couldn't get the thought out of my head. It was so strong, the feeling, that I finally went to emergency, urgent care. And I don't know why I chose urgent care. I was just like, here I come. I got my courage up and I said, I have a normal mammogram. They called me back on my left hand side, but I think I have it on the right hand side. And the woman listened, the doctor listened and called me in for some extra testing, in which they did an ultrasound, they finally looked like they could see some cancer, but it was early stage, they said. So I left all happy, well, not happy, maybe relieved, right? Okay, thank goodness it's not metastatic. And then when I went to see a surgeon for my mastectomy, he said, “Oh, you're kind of swollen. Your lymph nodes don't seem good.” And then they did a breast MRI and some bone biopsies and found out I indeed was metastatic.

K:
So why did they do the bone biopsies? Were you having pain already in your bones?

L:
I was... so when they did the ultrasound, the funny thing is I'm like, “Oh, please brace my body.” I did have back pain. It had been the first time in my life ever. So I don't really know what that experience is like, but I wanted them to bolster my body. But you ask why did they do a bone biopsy--it’s because sometimes you have a different type of cancer in your body and they wanted to validate that. Yes, I have breast cancer and it’s what is in my bones. Because they saw it.

K:
Oh, okay. It lit up on the MRI.

L:

Well, my chest lit up, so they knew it was other places, like in the ribs…. Oh, and then they did a PET scan, and they saw it was through the rest of the spinal system, but they needed to validate what they see on the PET scan and the MRI was indeed breast cancer, and so they strongly suspected it had traveled already when they did that bone biopsy. 

K:
Okay. And then your, your journey took you to a few different oncologists just based on the fact that you had lobular—you were doing a lot of your own research and you were looking for a better and a better second and third opinion and eventually you found it. What was that like when you found your, your better oncologist that gave you the treatment that you're now working with?

L:

Do you know there was such a sense of stress that I could feel in my body that I was constantly trying to put myself in some ways in medical school. I was trying to do online research and try to understand because I was aware that these well educated doctors, well meaning oncologists, didn't have the information they needed and I was concerned that I was not being cradled as much as I needed to be.

I think they were doing everything they could and I think they were wonderful people. So I don't mean that as an insult against them, but they just don't know enough about lobular. And, the second oncologist, I mentioned to her, maybe I want to see this doctor up in Seattle who's a specialist. And she actually was wise enough to realize she didn't know enough. And she contacted the specialist up in Seattle and talked to her. And they talked about my case, and I went up to see her too. And the sense of needing to research every morning, these two hours of, “what do I need to know about breast cancer?” Poof. That that stress is gone. It feels really good to be in the hands of someone who knows.

And also, there's a lot less fear because I had developed what is called the ESR1 mutation which tends to sound super scary and people say you have to be on this one drug and only this one drug, but you can't take another, it can't work in conjunction with another drug and it's overall survival is relatively small…. So I'm like, it doesn't sound so good. And this doctor that I'm seeing in Seattle had so much knowledge. She's like, “do you know what? I think we have other drug choices that will work for you. And I've seen this enough that even this ESR one mutation may revert back. Let's not get crazy about this.” And so there was a sense that she had from treating patients, from working in research that really, allowed me to feel a lot more peaceful.

K:
How many years? Through your experience, did it take to find this, this new oncologist that you're working with now?

L:
So I had spied her through some online conferences and I realized, Oh, that's a doable distance because Seattle from where we are here is maybe three and a half hours. I mean, not ideal, but it was, it was doable. It wasn't like getting in on an airplane and having to get there. But it wasn't until I had an oncologist who admitted she didn't know enough to really help me that I started the search.

But getting in with this doctor was a long waiting process. Well, five, six months.

K:
Oh, wow. Okay.

L:
You know how every month you feel so vulnerable. You're like, Oh, what if I don't get my treatment. But I think also this doctor realizes lobular tends to move very slowly. And she had looked over my paperwork enough and seen it. And also I think she's that kind of a busy woman that I was really thankful to be able to get into with her on any basis.

K:
And now you see her or her assistant monthly every other time, right?

L:
I see, um, every, I can see them as often as I need is the truthful answer, but we've chosen every two months cycle. So two months for the physician assistant, then the next two months with her, et cetera.

K:
Okay, so you've got a lot of access to her. How many years between your first oncologist and this oncologist that you've settled on?

L:
My first oncologist which in itself was a gift—my brothers were both, my brother in laws were both in the medical field and they realized I was over my head. And they both, one works with medical equipment, in particular PET scans, and he knew where to put out his feelers. And the other one was very knowledgeable as well. I think they knew I was faltering. And they found my very first oncologist for me. They had contacted all their friends so my first oncologist was a fantastic match, really knowledgeable. But when he left to practice in another country, I needed to find another. And that lasted, that relationship was oh, I guess five years.

It was a beautiful five years. And then my next oncologist was very new and loving and willing to admit when she didn't know enough, I needed more. And that lasted maybe eight months.

K:
So you don't, it doesn't sound like you regret the first line of treatment that you underwent?

L:
No. I was actually on a study drug then that is now very typical for women with metastatic lobular breast cancer

K:
Which one?
Was it a CDK4 6 inhibitor?

L:

Yeah, I had Ribocyclib... or quisquali—it’s called either name. And then my hormone blocker was an aromatase inhibitor called Letrozole.

K:

So it was the CDK4/6 that they were testing at that time because Letrozole was already on the market probably.

L:

Yes, exactly, it was like, it was, I think it was the Mona Lisa study.

K:
Yeah. Were you super excited to get into that study?

L:
I was super excited. But the realization of, gosh, this is such a fragile ground we're working on. Cause I remember there was a bunch of women in the study and suddenly there was just me. You only stayed on till progression. It made me realize how incredibly lucky I've been and how very indolent, personally, my cancer is. Mine is so slow growing. Certainly intelligent, but not as intelligent as others. So in other words, it doesn't mutate.

K:
Were the others on, did the others have lobular breast cancer as well or did they have ductal also?

L:
By in large it was ductal. I was never let know how many people had lobular, and other people stopped it because people have problems with joint pain. There's a lot of joint pain issues, but, um, fortunately, that wasn't really a big problem for me.

K:
And you mentioned “until progression.” So have you had an incidence of significant progression in your story?

L:
Yeah, so, the thing about scans is they do a pretty good job, with glucose avid cancers in your bones. Um, but not all lobular is very glucose avid. So what you see on PET scans are the really hungry cancer cells who are consuming lots of sugar, but the ones that are a little bit more laid back and not eating sugar, they don't show up on the PET scans. so what ended up happening is I was getting back PET scans that said basically stable, but all I could tell you is I couldn't bend through my pelvis. And I think I felt like my breast was feeling different. It's, you know, it isn't something I can really tell you it was this problem and that problem.

It was again, this, This internal feeling and um, she released me one from one appointment thinking I know big deal in the second appointment like nope It's just not right and I spoke up again at which point she did some blood work and they saw They did sorry a breast biopsy where they found the ESR1 mutation.

K:
And that was an incidence of progression then.

L:
Yes, I, when I then transferred care up to Seattle, I was given an FES scan and they did see that there was a lot more cancer in my pelvis beyond the glucose avid.

K:
Right. The regular PET scan.

L:
And I kept having this feeling like “I'm the Tin Man. Why can't I bend?” It was, you know, it wasn't, it wasn't quite painful at that point. But yeah, I felt like I was a Tin Man and always having exercised and move my body. I just, it wasn't right and I knew it.

K:
So it sounds like you didn't have an FES PET scan until you went up to Seattle just a couple of years ago. Okay. Okay. Now I want you to tell the story of what happened when you went up to Seattle because it sounds like you got a very new insight on your disease and understood what you needed a little bit differently.

L:
Oh my goodness. Yeah—between oncologist number two, the lovely woman who said “this is more than I know about.” She had a replacement show up. So I saw the replacement oncologist locally one time before going up to Seattle. that doctor said, emphatically, you must be on this med. And then we said, well, what if we don't just, oh, you're going to die. So I was really, um, rather convinced that I only had one choice. And when I went up to Seattle, she, uh, my oncologist there is such a calm human being she's like, no, I think we got a bunch of different choices here. Um, so she had me do some genetic testing and which I found out I carry a BRCA II mutation mosaic. Not germline, so I didn't inherit it, and it's not because it developed through cancer. It's something that developed when the zygote, when I was forming in my mommy. So it's a weird mutation which opened a whole—since she did the testing—that opens up a whole bunch of different drugs I can take in the future, some PARP inhibitors.

Um, but really what she gave me After she did the FES scan, she goes, you know what, I think you're doing really well, you are I think I can, I think I can give you quite a few more years, but we never know, and I don't think you need to, you know, the, the development of this ESR1 mutation was like, um, was so horrifying and shocking. I thought it was an end point, but it really wasn't. And she was very calm about it. So I really, really appreciate that woman. I actually call her La Papess, Popess. Yes.

K:
All right. So did you change your line of treatment when you went up to see Dr. Linden? Okay,

L:
Yeah, so Dr. Linden said, um, good news. We're going to still keep you on a CDK4 inhibitor, a different one, which made me very happy. And we chose to do Fulvestrin, which is the butt injections, which aren't, in fairness, they aren't the most enjoyable thing. And the monthly, You know, you have to go and get them monthly.

So unlike the pills, the pills I could do three months without seeing an oncologist, three to four months, which I really appreciated that. So yes, I'm up there every month, but they're working well for me. And I think as cancer goes on, I just become appreciative. I think I controlled life more. “Why can't I get these drugs for six months?”

I don't want to look at anyone for six months. And then you go, okay, you go once a month. And now I make it kind of a fun date. Sometimes I go by myself, sometimes I go with my husband, but I take nice walks and I enjoy Seattle. I pretend I'm traveling. So yes.

K:

And did you stop taking the CDK4 6 inhibitor or the letrosol in the meantime?

L:
So before she put me on a Palbocyclib, which is another CDK 4/6 Inhibitor, and Fulvestrant, yeah, she did stop for a period of time. And she said to me, “Breathe, relax, you'll be fine. It's a slow enough growing cancer. Nothing disastrous is going to happen in these few months, you'll be just fine.”

K:
Okay. And did your bending at the waist issue go away then after? .

L:
Well, I have new issues. Um, which may be collateral damage due to cancer treatment. But also I have, I have these cysts, these tarlov cysts that are pushing on my sacral nerves. So I have inflammation going on in my S1, S2 nerves. So movement through the pelvis is generally hard, but I do believe it is not related to cancer.

K:
What is your daily energy level with the drugs that you're taking now?

L:
Do you know, I don't feel that I'm really fatigued from cancer. What I do feel is because I guess to be more exact about how I feel, I feel like I have this perpetual sciatica feeling. So standing and walking are not pleasant. So if I sit all day long, I'm very happy. If I do a lot of bodily, you know, weight bearing exercise, I don't, body aches and says, please don't do this to me.

Um, so sometimes I'll take something for the nerve pain in those cases, but I'm also learning like different ways of getting my exercise in. So instead of doing a standard upright class. I can tell you chair aerobics can get your heart rate up.

K:
Good for you.

L:
Well, right. Or incumbant bicycle. My pelvis is like that. I don't put any weight in my legs and I can get my heart rate up. So it's a learning process on my end, but I wouldn't probably go to a Zumba class for sure. No.

K:
Yeah. I'm so glad that you're able to describe what it's like, um, because I encounter you to be an uninhibited. Co advocate. Like when I met you in person, I didn't notice that you were terribly uncomfortable. You were able to be very energetic and animated. And it's just, it's interesting to me to think about, um, the way I used to see metastatic patients and the way I see metastatic patients now, there's very little difference in terms of your presentation and your ability to get out in the world, drive around, do things. You're very functional, and I think that's partly because, like you said, you had a very slow growing and probably somewhat indolent cancer, like sometimes it probably has completely stopped growing. Do you feel like that's the case?

L:
Yes, yeah, yeah. I had a few years of scans where there was nothing going on. Exactly.

K:
Okay. And how anxious do you get when you get up to those scans nowadays, after all these years of living with the on again off again, do you ever have intense anxiety or is it a much easier journey?

L:
Do you know, I don't know that the PET scans caused me any anxiety. There's a sense of You're just gonna deal with whatever comes up You're gonna process and go through so I don't think that causes me anxiety. I think sometimes Um, I don't keep my balance well, and I let myself get, get swayed by other people.

I, I'm more anxious when I don't have my center. know, you'll have other people say, Oh, they can't see this. They can't see this. I'm going to do this kind of biopsy, that kind of biopsy, and those kinds of things are very stressful for me. I think for another person, that knowledge may be beautiful, but this whole idea of what they don't see, and what's it doing to me, is something that I, as long as I say. Let's separate those two things. Living with uncertainty is just something you learn how to do, and you need to learn how to do better every year.

I have to just say, yeah, it's uncertain. Yes, that's true.

K:
And when I met you close to a year ago, was that your first step into the advocacy space?

L:
Yes. I think I just had a really hard time with that one. Healing myself enough before I felt like I could take on others. I, you know, I don't know what other women go through, partially because, um, sometimes other people's stories are hard for me to listen to. I, until I'm strong enough, I can only take in little pieces at a time, I guess is what I was saying to you. um, it took me a good six years before I'm like, Oh, I have the strengths to do this. I'm grounded enough to do this. Maybe I could have done it sooner, but no, I think I needed that, I needed a lot of, uh, spiritual, I needed a lot of spiritual healing before, beforehand. I just couldn't do it otherwise.

K:
And what did that look like? The spiritual healing?

L:
Ugh, you know, I think I had to learn the purpose of pain, and I'm not just talking physical pain. I found everything people were saying in me was rubbing against me. You know, like you'd say, Oh, I'm sad because, you know, I'm not going to see my sons get married, maybe. And someone would say, Well, you don't know that. Or you'd say, Oh, you know, I don't feel comfortable knowing that I'm going to die sooner than I thought. Well, we're all going to die, would be the response. there were just a lot of responses. that were hard for me to process. But I realized there's just a whole lot of people who are in pain, they can't take on extra pain. There's a group of people who, when they look at you with pain, immediately think, oh, that's bad. You can't feel that way. Why do you keep doing that to yourself? Why do you keep adding pain to your life? You go, and I would then feel bad about myself for doing that. And then there's people who met well, but it didn't land right.

You go, Oh, don't say that to me, but in the end, what I learned is I think pain for me has served a really valuable purpose in terms of showing me how much more empathy and I need in this world, how much more empathy is needed in general, um, myself with myself, with others. Um, and I appreciate the pain now.

And I listened to, I say, “Leslie, it's okay. You feel sad about that.” And I'll repeat what I'm pained about because I find other people aren't always able to do that. it's me being able to say that this hurts. I didn't want it this way. That allows me to then get beyond the pain. And see things in a more beautiful light. But if I can't listen to my pain, I get stuck in it. Yeah, pain has served a purpose for growing empathy, understanding the world and seeing the beauty because you can't see beauty if everything's always sunny and rosy, at least that's how I feel about it.

K:
Yeah. And you're now a part of a metastatic support group where you can do that for others to now. Did that take a long time to find?

L:
No, you know, I was how you want to be an advocate. Is it, as you know, yeah, because there's different forms that actually even listened to a whole podcast on calling. I have a science background, but like, I don't feel very drawn to reading research articles. I can read them. I just, that isn't, My cup of tea, right? I just saw an email that came out from Lori from the LBCA said, anyone interested in doing this? I'm like, damn, yes, it just felt right when it came my way, I'm like, that's something I can do. I don't have to travel anywhere to do it.

K:
What was it?



L:

So it was the, the SHARE Cancer Group. The National SHARE Cancer Group was looking for women to support lobular cancer—women with metastatic breast cancer. And they just needed two facilitators and I just clicked yes without thinking a lot about it. I just knew my stomach said, yep, it feels right. And so that's what I've been doing. the group is new. So the training took a bit of time and then the group took a bit of time before we found a slot, but we've been in session since September.

K:
And are you, you're actually facilitating one of those groups?
How has that been for you?

L:
Um, you know, at first I thought it would, I was wondering, would I feel pain? Listening to other people's stories. Was I scared of how it would rub against me? I know it feels like this is a group of women where we all know what we've been through and we can talk together about our experiences. A lot of the women are newly diagnosed and you realize that's a hugely vulnerable group. There's not a lot of people in there that have cancer, have had cancer for a long time. Or like, yep, um, it's meaningful. I think when I had to quit teaching, I realized how much I'd loved my job and how much purpose it gave me and how I felt like I was helping others and also having a good time myself. I really, really love teaching, um, and I'm really happy to have found something. that maybe is similar. It gives me this as a purpose. I say similar, I don't know yet because it's still, it's still in the infancy.

K:
Yeah. Are they mostly younger women, younger than you?

L:
No, but there are women with young children. Um, so I'd say 45 to 65, maybe 70 is the, is the range, but currently it's a very small group of women and they're really just hungry, um, For information, because like you were asking me in the beginning, what did you need? You need someone, an oncologist who you feel good about, who knows enough that you can kind of go, (exhale)

K:
Did you have a support group of your own prior to this new one that's going on through Share?

L:
All the questions I need to fess up to. I did, Kathleen, but I found, I tried two different groups, and I just found they were so not the match for me. Um, one group I found there was this overwhelming gloom and doom feeling, which was probably very fair, but it didn't feel right for me. And then this other group, there was this need to turn everything into the best thing in the world. And that was scary, I think you do learn from cancer, but I think the learning happens after you acknowledge the pain. And the group was more like, “don't say that. That's bad. That's painful. Turn on the happy face.” It was like, you just had to have an on switch to happiness. And that just didn't feel right.

So I think honestly, that's what the facilitator felt was best for the group. I thought that was a genuine expression of what she believed.


K:

Yeah. I find that most of the support groups I've been to are a reflection of how much the facilitator can take. Like, it only goes as deep as the facilitator is able to let it go. So I'm so glad they have you because you are allowing that to go deep. Is it mostly de novo patients that you're working with in this group?

L:
Do you know, the answer would be no, but there's a surprising number of de novo patients. I'm shocked. So in this group of 10, both the facilitators, both me and my co-facilitator were both de novo and in the last group, we had two other women that were de novo. And I think that's just related to how hard imaging is to detect this disease.

K:
So true. I'm going to go through this a little more in my, in next week's episode and reflecting on some of the terms that you and I are talking about, but just for the sake of the brand new listener who doesn't know what de novo means, it just means you're coming into breast cancer for the first time with stage four uncurable metastatic disease.

And most times, most people don't realize this, but most times de novo patients don't have to lose their breasts. Did you have to lose your breasts?

L:
No, I did not, though I think some people are thinking maybe that's the right thing to do now, but you know how the cycle of things, it's always a long cycle. No, when I first got diagnosed, they say no mastectomies for de novo.

K:
I think it is still true that that's the standard of care. Did that make you uncomfortable? Did that weird you out that you didn't have to lose your breasts even though there were cancer cells in there?

L:
Initially, no, just because I had so many things I was processing, it's like, I just didn't feel like I could take on another thing. The sense of being overwhelmed, um, was pretty large. But now I'm debating, oh, if I can, if I can manage a longer time with this disease and this helps. I would definitely debate it.

K:
Do you think there would be a little bit less anxiety somehow or what would, what would the result of, of doing that be?

L:
Good question, Kathleen. Yes, maybe a little less anxiety, but you know what? I also have to realize cancer will have cancer's way and I am personally not in a battle trying to outsmart it at every step. doing the best I can. It does what it's doing. And we're living together. I can't worry. I can't worry too much. I do, I make all the choices I can for myself. And some are right. Often they're right. And sometimes they're not. But this is just what, this is just the process. I mean, cancer is a, is a, is a, uh, It's an amazingly smart disease in some ways. know, when you hear about the mutations women develop, What they, the drug they use to block the cancer could then be used to feed the cancer. You go, Oh my goodness, it's smart. So I'm just trying to say, I'm giving myself slack because you can only do so much and worry about so much. And I think my health is best when I say you're doing what you can see your beauty, see your value, see the beauty in this world. And that's good enough. It's a lot.

K:
Yeah. Talk a little bit more about your relationship to beauty these days?

L:
Um, I think the simple aspect of some days are so hard to walk and then I take one of these magical pain pills, and I don't mean anything severely stronger I think, but just something that helps with the nerve pain and then I can walk again and like my body moves like this. Isn't it beautiful to walk? And I'm noticing that all of a sudden I can take—oh, those are lovely flowers. Oh, look at that house. Isn't that beautiful? Um, I think cancer just has slowed me down enough that instead of seeing what's ugly, because there's plenty of ugly things, to look at with cancer, I'm looking for what is beautiful, and I'm trying to create more beauty around me. be it as simple as decorating, or in words, in kindness to other people. Um, I just, I don't know, beauty really calls, is a healing force for me. It calls me.

K:
I didn't tell you I was going to ask this question so you can turn it down if it makes you uncomfortable. But I know you're a spiritual person, you're a person of faith, and I'm assuming your family shares some of that with you. Does that make it easier to talk about the end and what you would like to have set up for yourself?

L:
Kathleen, I wish that were true. You know, my boys are young and they're not young, young, but you know, they're struggling to find their own ways. And, I think what ends up happening as a family is we all learn together how to better support each other and embrace pain. So I think it's a spiritual journey that we're all put on, but I don't think it's made it easier.

I know they would be sad and they'd say something like, um, like the ringing of the bell after radiation, they go, “do you want to ring the bell to celebrate your end of cancer?” And you're like, no, I don't. And it hurts. I would go home and talk to my one son about that. And he'd say, Oh, but you need to understand some people need to celebrate. Okay. And finally I had to say to him, “I have this understanding and want to celebrate. I just need my pain heard first.” And it's funny. It was maybe six months in which we were kind of at each other a little bit like that. But in the end, um, his ability to listen to pain, mine and others, and to ask the questions that people need to dare to ask to find out what's going on in someone's life—to just say whatever comes out is okay. You don't need to convince someone why you shouldn't feel pain, why this isn't right, another perspective. It just is. And to see him handle that so, um, gracefully at such a young age, well, a young adult age, I think is really beautiful.

So I'm very thankful for that.

K:
Do you have a bucket list?

L:
A bucket list. Um, no, I don't. No, just, just filling, filling things up in my life with beauty. I think French. is maybe my bucket list. I can't explain my relationship to French. I study French because it brings me joy. There's an ability to communicate in another language that doesn't exist in English for me. And I do it, not that I'm good at it, not that I'll I may never get near fluency, but it just feels good. So I think my bucket list kind of consists of these things. Making sure I'm finding beauty while embracing pain and things that feel good. And friendship is one of those things. My family, laughing with friends, a good glass of wine.

Those are all beautiful things.

K:
Yeah. How about an advocacy bucket list? Is there anything you really want to accomplish as an advocate?

L:
Yeah. So having never had had mammograms find my breast cancer. I think what I would really. to do is work on finding better screening for women and maybe taking some of the veil off the perfection of mammograms. I think mammograms are highly important and will continue to serve A very valuable purpose, but until enough women say because they have dense breast or because they have lobular breast cancer, that these tools aren't working for them, we don't have enough agents of change working on the status quo because, you know, we have a lot of money invested in mammograms and a lot of training, but we really do need, um, better screening.

K:
Amen. Yeah. Yeah. I feel like that's what I hear over and over from other lobular advocates. It feels like a cruel trick, you know, that this thing that is so held up among other women and in the breast cancer community at large has really swindled us that it really deceived us. And, um, we're only a small percent, 15 percent of that population, but so we don't the loudest voice or shouldn't have maybe the biggest say, but it still feels really, really tricky.

L:
Yeah, and I don't think you have to say mammograms are bad because they're not. They're great if you have fatty breasts, they're great, well maybe very good if you have ductal cancer. So they serve a lot of purposes, but they're not serving us all, and that's a true statement.

K:
Yeah. How do you feel about the advent of FES PET? Are you a huge fan? Do you shout about it from the rooftops or?

L:
You know, I think FES PET is great in that it can show you your hormone receptor status , throughout all these parts in your body that can't get biopsied easily. Where lobular breast cancer still really needs a, a scanning device is in the, in the gastrointestinal area. An FES PET does not help in that. So it's, it's a helpful tool for its purpose, but we still need some more, more tools.

K:
Well, I hope you'll come with me to San Antonio and speak about that to the scientists that are interested in hearing from you. Especially you should have a pretty loud voice in that context.

L:
Thank you, Kathleen.

K:
Yeah. Is there anything else that you'd like to share with other patients, whether they have lobular or not? Um, just something that you would have liked to have known early on going into a, a de novo diagnosis.

L:
Um, no, I think we covered it. It's just a hard phase and be gentle with yourself. It's hard. And for me, it took years.

K:
Yeah. Would you encourage folks to just keep trying support groups like rapid fire? If the first and second one don't work out, would you say that that's something you would do differently?

L:
You know, no, I, I had to spend a lot of time understanding why certain things hurt me I felt breast cancer was a graded report card. You know how like she beat breast cancer or cancer could have kicked her in the butt, but she was resilient.

You see this kind of messaging, which for someone who is going to die of breast cancer, I felt like I was failing in that report card. I wasn't strong enough. I wasn't meeting those things. And I never realized it was a report card until I had breast cancer. But so to answer your question I needed to spend six years to see my own value and my own merit. I had to separate from those messages. I think support groups could be great for another person. I just, I had a lot of weakness that I had to work on. A lot of “owies,” maybe not weakness. I had owies I had to work on until they were worked on. Support groups just hurt.

K:
Yeah. There's a lot of toxic language. In our community. And we need to work on that for sure. There's a lot of shame in our community that is unspoken. And when you go into a support group and that shame is unspoken, it almost reinforces the shame, right?

L:
Yes.

K:
I feel the same way. Yeah. My first support group was the same. It didn't go deep enough for me to feel like I was getting some healing. And. Yet for me, I didn't need to withdraw in order to work on that and get rid of the shame. I just needed to find a different group of humans that could admit that they had shame and that it was a lie. So that's interesting. We all get there somehow. We can either get there on our own or with others, but as long as we keep working on the shame and dismantling it, I think that's the main thing.

L:
Yeah. And thank you for bringing up the shame because yes, there is a whole lot of shame that takes a lot of effort to work past that or work with it. Yeah.

K:
Yeah. Well, thank you, Leslie. I'm so glad that you came and told your story and let these things be known about you. It is, it is so refreshing for me. To hear more about your story, and I look forward to hearing more and more and hearing how it goes with future treatments. You, you're always a bright source of light and hope in our community. And I just feel like, like you said, that is, is rare in the metastatic realm. Sometimes you get doom and gloom, but you are not, you're anything but doom and gloom.

L:
Kathleen. I really appreciate it. Thank you for listening. I appreciate it very much.

K:
Yeah. I'll see you in a few days at our next meeting.

L:
Okay, bye.

Today I'm just reflecting on how Breast Cancer Awareness month has gone for me personally this year. I hope it's been a good one for you! 

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Transcript:

Today's the last episode in breast cancer awareness month, 2024. And so I just wanted to do a special episode reflecting on my personal experience this year in October, Pinktober. I don't feel like I need to recap on my interview with Marina Blackford, which was my last interview. She is such a master educator that she defined all of the terms well, and I don't feel like there's much to say to clarify.

except to remind you that she is going to be in the New York city marathon on November 3rd. so just about a week from when this airs and she will be on Instagram at her name, Marina Blackford, all one word, um, posting photos of that. So if you want to support her, cheer her on, follow her and see her photos, be sure and look for her at Instagram.

But, uh, this being the last week of October, I am pretty wiped out. I don't know if you're watching this on YouTube right now, but if you are, you could see that I'm pretty tired. And today I leave for a four day, three night reunion retreat with some of my closest girlfriends, celebrating 20 years of friendship.

And so that seems like a really good way to cap off this October, uh, out at the beach. Just, you know, Laying around at the stormy rainy Oregon coast so we're going to be out at cascade head this weekend when this podcast goes live and That's a really really fitting way for me to end because I have had such a busy and eventful and Really prosperous month this month, just like last year.

So the main thing when I reflect over my month is that I've I've been thinking about how important it is every year to meet new breast cancer patients and new survivors and people who will become leaders in our community. I will also meet people who will not become leaders or who aren't even interested in sticking around in the breast cancer community.

But, This month I met quite a few that I think will be sticking around and who will become very influential leaders people who are willing to speak out and change our norms and challenge our systems. And so that's the most hopeful and encouraging thing that's come out of this breast cancer awareness month for me.

While I was down in San Francisco during my half marathon, I met a doctor who was a flattie and a lobular survivor. So she had my two things. That I'm really passionate about advocating for in common and she's a doctor and she's connected in her community of physicians. And so that was the most hopeful thing just to hear how passionate she is and how determined she is to be vocal about her experience and to help change the way that we deal with especially lobular breast cancer being underfunded, under researched.

The second thing that I'm most excited about this month is that I started a pilot project here locally for my local breast cancer survivors community. Uh, it's not just for flatties, it's not just for lobular survivors, it's for breast cancer survivors in general. And it has to do with my passion for health and being a health educator myself.

I became a nutritionist about eight years ago. Just a couple of years after I was first suspected to have very early breast cancer and started getting extensive screening for breast cancer. And I thought nutrition was the way to address it. I thought that studying nutrition was the answer as many women do.

And now, after, about 10 years of studying nutrition, both formally and informally, I've also been studying all the other lifestyle factors, and I've determined that while nutrition is not something we can prove moves the needle, I do feel like it kept my cancer small. It is not something we can conclusively say or that I can conclusively say to any of my patients is going to solve their breast cancer problem or keep their breast cancer from coming back.

What I can say that science is telling us very clearly is that exercise can keep cancer from coming back. Not always, but it's a really good bet. And so what I've decided to do as a nutritionist, as a way to kind of quell my feelings of conflict over the overemphasis on nutrition in our community is to come out as a nutritionist in favor of exercise as someone who has never been an athlete, who has never been motivated to exercise and still am not on most days.

I would like to have a system in place locally where I can be held accountable to my goals to walking three days a week for an hour at a time, which is what science is telling us right now is the best thing to keep recurrence at bay and to fight off. The environment of inflammation that happens so often in our lives for various reasons.

And so I decided to start a pilot project here in Oregon, and I intentionally didn't go out to those groups that I'm already connected to, but really was seeking out strangers in our community so that I can get really unbiased feedback and input. To develop this program and make it bigger and make it reproducible for other communities.

So I'm calling it walk away from breast cancer. It's just a way to keep walking. It's a weekly check in on zoom and then getting together in person about quarterly to do a relay race in person as a team walking, not running. And it's really pointed at people who are not athletes who are not motivated to get to the gym or exercise regularly.

So it's really meant to be an accountability tool and the relays are just a way to have an end goal in sight that's common and shared and a way to celebrate together. So like I said, it's a pilot project. It's really small right now and intentionally so. And I'm hoping that by next breast cancer awareness month, this will be my main focus is spreading the word about this and maybe even reproducing it across other states or countries.

So stay tuned for news about that. I won't be talking about that a whole lot this year because it's going to be pretty small. Um, but I might talk about it. I might check in and give you an update now and then on the podcast.

The other thing I realized toward the end of this breast cancer month was that my, flat community, That has been a really huge part of forming my new identity as a breast cancer survivor. Here in Oregon has grown a lot. We get new Flatties joining, Oregon Flatties on Facebook every month and people are really interested in connecting.

It's a very close and very safe community. And what I've discovered is I've been one of the main people welcoming new folks, and there's been enough growth in my area that I feel like I'm ready to launch a little off sprout, little subgroup of flatties here, uh, in the rural part of the Willamette Valley that is west of I-5.

So I think we've pretty much decided to call ourselves, Willamette Valley. West Valley flatties, an offshoot of Oregon flatties, and we don't have a Facebook group yet or anything like that, but I think we're going to be getting together for happy hour, like, once a month and just getting to know each other.

There's quite a few new flatties in our area, so that's really exciting. Something to go forward into the new year with also that's face to face and not online, which is more valuable to me for sure. And I think to most people. So that's exciting. I might be sharing, if you follow me on Instagram or Facebook, I might be sharing our new logo there.

I have two new logos in my life. I've been working on the one for Walk Away from Breast Cancer, and now today I've been working on the one for West Valley Flatties as well. And, um, getting some taglines and stuff like that in place is always fun. It's part of the really fun part of being an entrepreneur and a creator is making those things that are going to be educating the public about what we're doing and why we're here.

The really sad, challenging part of this breast cancer month for me has been losing another friend to metastatic cancer. In this case, she didn't. die to metastatic breast cancer. Actually, she was a a pre vivor in the breast cancer community. I met her down in San Francisco last October for flat day. We walked across the Golden Gate Bridge together and hung out, in different settings there and just really connected with her.

She was just a very innocent light. Um, joyful soul. Her name was Susanna and I had planned to meet up with her this last week when I was in San Francisco last weekend and I was going to be doing a half marathon there and I'd been in touch with her by text and told her that I tried to check in with her when I flew in on Friday.

And just before I flew in, I texted her and I didn't hear back from her and I knew that she was really sick and in the hospital and that. She had had an occurrence of cancer, metastatic cancer. And, um, so I knew when she didn't text me back. She's an excellent communicator. And I knew that she probably had passed.

But I went ahead and finished my trip to San Francisco before I chose to look on Facebook and see if her feed said anything. I didn't, I don't have Facebook on my phone, so I couldn't have checked down in San Francisco anyway. But I did as soon as I got back checked in with a friend. It was on Facebook to ask her if she'd seen anything and she looked on her Facebook page right away and, and she had passed.

So this is friend or family member, number four, since last August that I've lost to metastatic cancer and That is just a reality of being and staying in this community long term. You're going to lose friends and fellow advocates along the way. And that's really hard. Sometimes it's triggering. It's been triggering, also to hear my, my other friend who has just been diagnosed with metastatic breast cancer, who is still living, but hearing her tell her story, at our local Portland walk.

The other day was really hard to cause it reminds me of my mom and her story. Um, so yeah, it's just, that's just a hard part. And it was especially hard to lose someone during breast cancer month this year. Um, and just apprehend that there will be further losses in the next year as well.

So something to counterbalance that, uh, really joyful piece of news this month personally was that my stepson Mason got engaged. He has, Been talking to his girlfriend for a while about marriage, and we knew it was somewhere on the horizon, but we didn't know if he would be able to do it anytime soon.

And so really proud of him that he made that step, and that this next year is going to be one of a lot of joy and celebration as a result. And I'm very, very excited about his girlfriend being a long term member of our extended family. So, that's just something that is. brought me up and buoyed me during the really challenging moments of the last month.

Another couple of things that have brought me up are my Achievements. I did a 10 K successfully in Vancouver, Washington, a couple of weekends ago with my friend Debby, who is also my walking partner and will probably be a leader in Walk Away from Breast Cancer with me. And then I met one of my closest, longest friends down in San Francisco and did a half marathon.

That was really challenging. Um, It's funny how much more challenging just doubling your distance can be. And probably I hadn't trained as intensively as I should have, but a half marathons just over 13 miles. And it was the most beautiful 13 miles I could have picked because we started from the ferry building in San Francisco and walked all the way across the golden gate bridge.

And then most of the way back, almost all the way back to the ferry building, which was a half marathon. And we did that with the Pinkathon. Fundraiser down in San Francisco for Breast Cancer Research Foundation, and my friend was six months pregnant So that was quite a feat for her as well. I'm not sure that I'll ever Attempt a half marathon again except for in relay form because I just don't know that it is good for my body to walk that much at one time without resting.

And in that setting, it's really hard to give yourself a rest because you're wanting to finish and those around you are wanting to finish. And so I'm glad I did it once. I don't know that I will aspire to do it again. I hope that I do many 10 Ks again because I feel like that is a healthy amount of walking to do without a significant break, at least for my body and my age.

But I'm glad that I tried it and that I did it, and I'm hoping to take a team next year to do that same walk or race in relay form so that we can still experience the beauty of that course. They don't even have to rope off any streets at all. It's very easy to do that walk. And so hopefully we'll do it again with Pinkathon next year if the dates line up and work for us as a team.

But that was a major accomplishment for me as a non athlete, as someone who does not tend to get energy from exercise. I have chronic fatigue syndrome and I, I generally get more tired after exercise. So I had to really be careful and train carefully for this and work up my stamina and work up my ability, to withstand that kind of distance and that kind of, Lack of rest in the midst of, of exercise like that.

So really proud of myself. I didn't get a medal for that one, but I did get a medal for the 10 K and I, I definitely treasure the medal that I got for the 10 K up in Vancouver. Uh, that one's called the girlfriend's run. And I really want to do that one again too, as a walk. Um, cause that was really fun and beautiful as well.

The other thing that happened for the first time this October was we celebrated the first ever Lobular Breast Cancer Awareness Day. Hopefully it will be recognized globally across many countries and states next year, but this year we kind of did it on the run and I think it was maybe five or six states that proclaimed it an official day and Oregon wasn't one of them, but that didn't matter.

We got together. outside of my oncology clinic in Northeast Portland with my oncologist, Dr. Stanton, and two other advocates in the lobular community, one who's been around for a while and one that's brand new. Joined me and we all talked together. The four of us, we tried to pass out literature, but we didn't get very much done in that department, but hopefully next year we'll get inside the cancer center and we'll have access to actual cancer patients, which would be a big change so that was a really fun day and I'm sure we'll do different things, different years.

There were lots of webinars, some of which got recorded. So keep an eye on the LBCA's website. Lobularbreastcancer. org to find the recordings there if you're curious.

And of course, my involvement with Stand Tall AFC was significant again this year. I was in charge of tabling and I got to help advocates across the country apply for tables at big walks and small walks. And then when they got granted tables, I taught them and mentored them through the process of talking to breast cancer survivors and patients about Going flat after mastectomy, the importance of the phrase aesthetic flat closure when talking to your surgeon and that ensuring that you don't get left with lots of extra skin just because you don't get an implant doesn't mean your surgeon won't leave you with lots of extra skin hanging out.

And that's why the term aesthetic flat closure exists. And so we're doing a lot more advocacy and having a lot more conversations with patients for the first time because of this new tabling. Initiative that we have, and I'm hoping that I can stick it out and do this again next year, at least here in the Northwest.

Maybe I'll cut back my role and not be quite as national in my focus, but hopefully I'll continue to do tabling myself and maybe mentor others to do it in the Northwest here. And my role in the Lobular Breast Cancer Alliance setting is still firmly in place as well.

We hope to plant two more local advocacy groups across the country. Right now we have one in South Carolina and one in the D. C. area. I expect there will be one in Michigan before too long and hopefully one here in the Northwest, but, um, I'm having lots of fun in that role as well and hope to continue there until next breast cancer awareness month.

So lots of work to do, but lots of work got done this, this month and I am thoroughly exhausted from it. But in a good way, and, I know that my mom is looking down on me and feeling proud of all the work that I'm doing. And hopefully Susanna is there with her and cheering me on as well. And, I have a little incentive for those of you who are fans of the podcast.

I've been collecting some gifts to give out. And, uh, because I have had very few ratings and reviews on the podcast players, I'm hoping that this month I can ask you to rate and review the podcast. If you're a fan, it is definitely binge worthy now. I think I have 17 or 18 episodes. And so if you've been able to hear more than a couple of them and you're a fan, Please go to your podcast player, whether it's Apple or Spotify or some other podcast player, and leave me a rating and review there.

And if you do so, you can screenshot that rating and review and email it to me at kathleenmoss@protonmail com. And tell me if you'd like to be on my email list while you're at it. But if you email me a screenshot, I will enter you into a drawing for some really cool and beautiful things. Um, I'm, I've got some bras, I've got some shawls and towels that are really beautifully woven.

And then I've got some breast cancer magazines from Wildfire. Breast cancer magazine and a book of poetry that's been donated. So I will ask you if you win, if you're drawn, and I'll have about 20 people that'll be drawn. I'll ask you if you would prefer something to read or something to wear. And based on that, I will send you a little gift in the mail.

If you're willing to send your address to me, which I will not use for other purposes or share with other organizations. And this is just kind of a thank you for being a part of this community for supporting me. And also a way for me to get some ratings and reviews and get some feedback from the folks that listen to me most.

So thanks in advance for doing that. Again, my email address is Kathleen Moss at protonmail. com. And you can send me that screenshot right away. I'll talk to you next week on Sunday. Bye bye.

Today's episode is part two of my advocacy series. I hope it's helpful, but if volunteerism and advocacy isn't your thing, I'll have more stories from guests coming up in the next two weeks!

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Join my Newsletter Mailing List:

https://abreastcancerdiary.substack.com

Links: 

NBCC: https://stopbreastcancer.org 

LBCA: https://lobularbreastcancer.org

Tigerlily Foundation (WOC, young ambassadors locally): https://angel.tigerlilyfoundation.org/

Inflammatory Breast Cancer Network: https://theibcnetwork.org/

Project Life MBC (metastatic): https://www.projectlifembc.com/

Project Life MBC/LGBTQ: https://www.projectlifembc.com/project-outreach

MBC Alliance (metastatic): https://www.mbcalliance.org/members/

Triple Negative Foundation: https://tnbcfoundation.org/

Stand Tall AFC: https://standtallafc.org

Not Putting on a Shirt: https://notputtingonashirt.org/whcra/

Make Cancer Less Shitty: https://www.makecancerlessshitty.com/our-ambassadors

Young Survival Coalition (science and legislation): https://youngsurvival.org

The Breasties: https://thebreasties.org/

For the Breast of Us (women of color, national): https://www.breastofus.com/on-podcast/

Cancer Culture (for metastatic patients, event driven, in Virginia): https://www.cancerculture.org/

Today, it's just me again, and I'm going to be talking about advocacy again, this is part two of my two part series on advocacy for breast cancer patients or former patients who are thrivers and survivors. And my first, if you heard. Didn't hear my first edition, uh, to this series. It was about the less intense ways to become an advocate.

The ways to just dip your feet in the water and try it out. Uh, less commitment, less intensity, less time involvement, less, less longevity to the commitment that was last week. Now, this week I'm gonna be talking about the kinds of ways to become an advocate that are longer term, more time intensive, not necessarily, you know.

Something you couldn't do in your evenings and weekends if you're still working full-time, but, uh, a little bit more hardcore advocacy. And like I said last week, it's mainly in the niche areas, in the edges or the margins of breast cancer that you find opportunities to become an advocate, but not always.

So I'm gonna start out by talking about the more mainstream organizations that support breast cancer advocates, the ones that aren't fitting into any of those niche, margin. Topics or populations. So, as you may have guessed, Komen and the American Cancer Society are two of the most visible organizations that work with breast cancer survivors.

Long term, they have mixed reviews. They're, you either love them or you hate 'em. People who are critical of them are critical because a lot of the dollars they raise go back towards the bureaucracy of running their very, very large infrastructure organizations. So it's a little bit of criticism there.

They're doing the best they can, making improvements, aware that they're being criticized. Komen will tend to want to partner with people around just fundraising and awareness raising and visibility for their campaigns.

They have a couple of different campaigns nationwide. The main one is More than Pink and that's just their walks in different towns and cities, you can show up there, bring a team and , get your team to raise money for them, raise visibility for them, and they will be very happy. The other thing that Komen does is they train science advocates and their program is called Advocates in Science.

AIS and once you sign up for that, you'll wanna look in your email inbox to make sure and catch all the a IS emails. I am an advocate in science with Komen, and sometimes I don't know the name of the person that's emailing me from them, but usually they'll put the, the, um, letters A IS in the email. So it's a very hands off.

Uh, advocacy training, it's all online. It's very impersonal. You don't actually get to know any one person in particular. And that, for me, was hard. I like to do a little bit more personal work and be mentored and, I don't know, see people in person when possible. So, AIS is a really good program that I recommend for those of you who are maybe introverts who don't wanna travel across the country.

To go to an in-person advocacy training. And again, that is science advocacy. That is a very particular brand of advocacy. We have mainly two brands of advocacy, um, education and science, and then there's fundraising for those that wanna just do fundraising. So to, oh, and then there's actually, there's four that I'm gonna talk about today.

So education, that's peer-to-peer. Uh, sometimes you can educate your clinician. Usually you're not trying to do that. And uh, science is usually with regard to educating yourself in terms of research so that you can go and be, an advocate in the research community. And then fundraising obviously is really easy.

You just go out and raise funds for whatever organization you support. But then there's also, uh. Legislative advocacy or lobbying. And that's another type of advocacy that you can do for certain types of nonprofit organizations that are not 501c3's. So I'll talk a little bit about that. But most of what I'm gonna talk about today is about education and science.

Um, so. Some of my favorite organizations, oh, and I was gonna say that, um, American Cancer Society, they're the other kind of mainstream, huge monstrous organization that supports breast cancer patients in the world. And they do that by kind of gathering the science and, uh, reporting out on all the numbers.

And, every year there's, you know, different statistics that come out from them. They also do a lot of funding for research as Komen does, and they really like to. Team up with folks in the breast cancer community more personally , choosing one or two representatives, or ambassadors from the breast cancer community locally during the time that they're putting on a walk in the local community.

So they will ask you to raise a certain amount of money as their ambassador, but also they will ask you to go out and publicly speak, maybe get on the news for them so it's a little bit more of a partnership and you'll be mentored a little bit more personally. But it's not educational in nature. It is very much fundraising awareness, raising media, raising for them and for their cause, not necessarily for you or for your cause.

So beyond those two gigantic, kind of global organizations, we've got all of the marginal ones. And so I'm gonna list off a bunch of those and, I don't know a whole lot about all of these, but I know quite a bit about most of them. So I'll start out with some of the ones that I've been involved with that I can tell you personally about.

My favorite one is called the National Breast Cancer Coalition. , they are my favorite because they have invested the most in me, and they are a little bit more of an edgy research organization. So unlike Komen and maybe American Cancer Society, they're doing funding of kind of novel ideas in the breast cancer space.

Uh, they're not investing as much in the kinds of studies, uh, and trials that we've been doing for decades and decades. So they have a little bit different edge on, their standards for choosing the research that they will endorse. And they lobby for lots and lots of funding, mostly from government sources every year.

And then they also do. Uh, more legislative lo lobbying so that's what they do as an organization, but then. The way that I interacted with them is they trained me to be an advocate in science. So just like Komen has their advocates in science, NBCC has their advocates in science, and you can be both at the same time.

If you're really obsessed with science and the science of breast cancer, then I highly recommend being both. So NBCC though, they train. They're advocates in person in San Diego every year. It's a highly competitive program. Not everybody gets in. You have to kind of prove that you're serious about advocacy before you apply, and one of the ways that you prove that you're serious about advocacy is by showing up to their leadership summit, which happens every May in Washington DC.

So they're kind of like a bi-coastal organization. They have their big event every year in Washington dc Everyone's invited to that every year consecutively. You can come. Over and over and over. And then they have their week long training in San Diego every year, but that's only a one time thing. And there are follow up trainings, but most of those are online.

And then they do have their legislative advocates that they train separately. And that's pretty much online. It's, it's more of a, a zoom based training. But I, I really got a lot out of their project lead, which is their advocacy in science or advocate in science training in San Diego. And I did it backwards 'cause I came to them straight after Covid.

I got into the project lead the week long. Educational training in the science of breast cancer before I went to the summit. I'm going to the summit next month for the first time, but I haven't been to the summit before. Most, most often you'll find that you are accepted into Project Lead after you've been to the summit and Project Lead.

What it is is very intense day long trainings. By the scientific community. They bring in all the best scientists in breast cancer from all over the world, and you learn from them directly on all of the different. Parts of the science of breast cancer. So you learn about immunology, you learn about breast cancer research, how to look and pick apart, uh, a research, a trial, so that you know whether it's reliable.

Uh, you learn about the different ways that media can spin that research to make it look more significant than it really is, and some of the more kind of controversial issues in the breast cancer research world, you kind of look into those too. So I highly recommend that if you're a serious. Someone who's serious about advocacy and you really wanna go the long haul and use your knowledge in, in breast cancer science long term, it is a big investment that they make.

It is an expensive training and there are scholarships for it. Um, usually they'll just pay for part of it. Uh, but if you have a sponsoring organization like I did, then your sponsoring organization can also provide you with a scholarship in many cases. So that organization that sent me to the NBCC's project Lead is the Lobular Breast Cancer Alliance, and I am now an advocate for them.

I am one of their official advocates. After going through NBCC's program, I. I, I started to work right away, uh, leading one of, or coordinating one of their programs, a local advocacy teams program. So the LBCA supports me in a lot of ways, but I also support them because I, I do a lot of volunteer work for them and kind of mentoring other.

Newer advocates in an in-person local advocacy team setting. So you can join the Lobular Breast Cancer Alliance if you've had lobular breast cancer, or even if you haven't, if you're a caregiver or someone that cares a lot about lobular, usually it's the patients that come to us. And there's lots of ways to get involved as an advocate.

With the Lobular Breast Cancer Alliance, it's one of the most open organizations, lots of ins, lots of opportunities, and those opportunities are made very clear on the website. There are committees that you can join. You can do more nationally based advocacy and education. You can do research advocacy, you can sign up to be a research advocate in lobular trials, and then the Lobular Breast Cancer Alliance will have your name on a list.

When a scientist comes to them to say, Hey, I need a patient's perspective, then the Lobular Breast Cancer Alliance would call you and say, Hey, this lab needs a patient's perspective. Usually that lab's not gonna be in your backyard, but it might be probably not. Uh, and then you can sign up to be on the team of people that review that trial in an ongoing way from the beginning to the end.

And that's what we call advocates in science or advocates in research. Or you can just do your own local advocacy in your own community to raise awareness for lobular breast cancer like I do and like I help other people do. And that means not just showing up to walks, which would be great, but also showing up.

Uh, on October 15th, which is the global Lobular Breast Cancer Awareness Day, uh, it could mean that you're bringing flyers and literature to your local clinics and libraries of clinics or hospitals, or to your clinicians. It could mean all kinds of things. You could do fundraising for the LBCA. Doing all kinds of advocacy and they give you a whole big, long list of ways that you can do that.

You can do interviews for national media or local media. You can set up a table at a health fair. Just all kinds of ways to do advocacy with that organization. They're an excellent organization that supports their advocates very well.  The next place on my list is around metastatic breast cancer, which in my experience and opinion, needs a lot of support and awareness raising.

And the one of the organizations that has maybe a little bit less receptivity or paths of, , being able to join them is the MBCA, so not the LBCA, but the MBCA, which is Metastatic Breast Cancer Alliance, and they're at MBCalliance.org and you can join them if you're an organization like the LBCA is a member.

That's a group member or you can join them if you're a patient who has been metastatic. I tried to join them as an individual member. Since my mom was metastatic as an advocate for metastatic breast cancer and I was not accepted. So I think probably if you're not a metastatic patient, you may not be accepted as an individual member, but if you are accepted as an individual member, they're very supportive.

They have regular meetings. They will give you support in terms of like scholarships to training events of your own choosing. And it's a very, um. A great, a great network of resources. So they're gonna provide educational resources and travel grants to get to different conferences to learn about metastatic breast cancer.

Another organization that I work with closely is Stand Tall, AFC. I've mentioned them a number of times in the podcast and so I won't say a whole lot about them, but they are about the type of closure that you get after a mastectomy and at stand tall we are really just focused on. Breast cancer walks, it's a very narrow path of advocacy. You can only be an advocate at stand tall if you are going to the breast cancer walks in your community and either leading a team of volunteer, flatties that can, are willing to be seen as flatties. So whether they're wearing a shirt that says flat, or whether they're taking their shirt off to be seen, um, it's just about visibility, support, and solidarity.

And then if you've done that kind of leadership, if you led a team in the past, you can move up to the next. Responsibility level and do a table. And so I kind of mentor people around tabling and tabling at walks is very different than leading a team at walks. It is much more conversational, much more educational.

There are, you know, brochures and literature and, and things you can hand out and use as kind of prompts when you're just getting rolling. So it shouldn't be something you're too intimidated to do, but it is very much of an educational role. And so Stand Tall AFC has that place in the breast cancer world of just showing up to breast cancer walks and breast cancer events and either showing visibility or educating folks that walk up to your table.

Another flat. Oriented organization that's a little different is Stand Tall's umbrella organization, which is a, a nonprofit called not putting on a shirt.org. And um, they are doing a kind of a legislative project where they're seeking to amend the wording to the W-H-C-R-A act. Um, it's the Women's Health and Cancer Rights Act, and they are seeking to just.

Put a couple of words in that would make it a little bit more likely that flat closure would be funded by insurance in all cases across the board. Just the way that implants are funded by insurance in all cases, which is what the W-H-C-R-A was created to ensure. So that's a very niche little path of advocacy.

But I will put that link down below so that if you're passionate about the W-H-C-R-A and adding those two words, um, so it's not just paying for, reconstruction, but reconstruction or chest wall reconstruction. The chest wall is the two words that we're seeking to add. So that's a very, very, very niche, um, area of advocacy, but very legitimate for many of us, including myself.

And so I'll put the link down below to let you look into that if you're interested. Uh, the Triple Negative Breast Cancer Foundation, this is one I don't know as much about. Um, this is one that is, I think they're the main contact for triple negative advocacy in the world. And the main thing they do is.

They allow you to help them fundraise. So it is pretty simple. There's not a lot of paths into the actual work that they're doing. As far as I can tell. It's mostly about fundraising or you can receive support from them in terms of getting into a support group or something like that too. And then, um, some of the organizations that are oriented around women of color and their needs are Tigerlily at tigerlillyfoundation.org.

They are mostly concerned about equity and um, they have a really beautiful program that they allow everyone, I think everyone can apply to be, to be an advocate for them. So they have their own advocacy program, it's called Angels, and I think it's mostly geared toward younger women who are breast cancer survivors.

And it's mostly geared toward. Advocates pushing for equity in healthcare setting for people of color, women of color. So if you become an advocate for them, you're mostly gonna be advocating for women of color, even if you aren't a woman of color. Um, but most of their advocates are women of color, but they're very, very inclusive. I felt very much embraced by them when I met them at the San Antonio, breast Cancer Symposium. They were not. Only interested in partnering with women of color. I've, I'm very much not in that population, so I've, I'm just, you know, Northern European in my ancestry, so. But they were very interested in allowing me to fill out the Angel application to become an angel advocate. So I love that and I love them.

And the other one that I've interacted with a little bit in those same spaces at Project Lead and the San Antonio Symposium is "For the Breast of Us", and their website is breast of us.com. And. They are a little bit less, I think they have a very small staff. I can't tell that whether they're interacting with folks very much on the advocacy.

In terms of like mentoring or supporting advocates in, in their space, but they are very much educating and giving lots of resources. So if you're wanting to be kind of a solo advocate and receive from them the resources that they have to give around advocating for women of color and breast cancer, I think they're amazing.

They're really good at kind of redefining things in their own terms, so they don't say allies. Uh, they say accomplices and they have a little training for accomplices. Again, for people who aren't women of color who want to be allies, what we call allies in this space, um, they call them accomplices, so more like partners than just allies.

And so their website is extensive. It's really, um, it's really full of resources, but you can't. I don't think they even have a newsletter. They don't have a lot of interaction, I guess is what I'm saying. They're supportive of advocacy, but they're not training or supporting advocates or communicating every, every month with advocates the way that the LBCA does, for example.

Um, but they do have a great podcast and I think that if you got involved in reading their blog or listening to their podcast, you'd probably find some ways in. To connect with them because I know they do send advocates to Project Lead, so they must have some ambassadors in some respect. Um, so yeah, I encourage you to learn more about them.

Uh, let's see. Young Survival Coalition, so their young survival.org is the website. They have mostly science and legislative advocacy programs, and they have in-person events. Their in-person events are more educational. They're not really. They're just educating you about, generally about the breast cancer as a young survivor and bringing people together.

They're not really training you to be an advocate. Exactly. Although I think there's some crossover there. Um, but they do have a great, on their website, they have great resources, and if you want to be a science advocate or a legislative advocate, they have pathways for you to follow that are on their website.

And then a really small niche, little marginal population in the breast cancer community, even smaller than lobular and triple negative is something called inflammatory breast cancer. The main place to go if you wanna advocate for that population is uh, it's called theibcnetwork.org, so the inflammatory breast cancer network, they are kind of the place to go for resources and for connection.

And I've got a couple other, um, organizations that I know very little about.

Project life MBC. So Project Life NBC is only for metastatic breast cancer patients. They have a lot of supportive resources in education to help people feel a little bit more prepared to be a metastatic breast cancer patient. But they also have a couple of advocacy avenues that they have for for people who wanna become advocates.

Most of their advocates are folks that have been advocating for a while individually and then have decided to start volunteering for them as educators. And so that's the, the folks I know. Who are involved as advocates with Project Life are folks who have been pretty active in the advocacy space and they either teach a class or offer support group or do something give back to the community in that way, online mostly.

So most, almost all of their offerings are online at Project Life, but Project Life. Al also has a very, very. Niched, um, area for metastatic breast cancer patients who are, queer or L-G-B-T-Q. So they have one little part of their website that is just this one little project for advocacy and awareness raising around folks who have metastatic breast cancer in that population. So I will link to that below as well.

And then there are a couple of organizations that don't do a whole lot of advocacy, but I just wanna mention because I feel like they also do a lot of good in, in the world and probably will be doing some sort of advocacy just by nature of the fact that they're growing, um, tremendously these days.

So The Breasties is one of them, and the Breasty is a very general. Organization, it's, it's just supporting women who've had breast and gynecological cancers. And the main way that they support women is just by having fun. So they just have this camp every year that has incredible funding, incredible opportunities to like dance and swim and just be childish together like you do when you go to camp and, and then also hear from panels and experts and learn a little bit in education.

And then the Breasties. They do their own advocacy. So if you wanted to like be on their board or take a leadership position with them, I think they do advocacy, but they don't really partner with patients a ton around advocacy. That's my impression, just looking at their website and trying to understand what they're offering.

I may be wrong about that, but they do have some things they're boasting about doing in terms of the advocacy space, but I think it's just their leadership team that does it. And then there's an organization called Cancer Culture, and it is very event driven, and it is on the east coast. It's in Virginia.

So for those of us on the west coast, we probably won't really interact much with cancer culture, but I just wanted to mention them. For those who are on the East Coast and you're interested in more of an artistic, um, kind of event based and aesthetic based organization, they, they started kind of. In the realm of art and fashion, I believe. And so they have a very flamboyant kind of, uh, affect. And like I said, that's, it's all in person event based--it's, not online at all.

Another place that I've heard about through in different conferences that I've gone to that's very curious to me is an organization called Make Cancer Less shitty.com, and they are all about the side effects of cancer. Not just breast cancer, but all cancers. The drugs that we take, the chemo that we take, the long-term metastatic drugs, all have just horrendous side effects, usually including diarrhea. And so that's why they chose that title. And they're, as you can imagine, they're very edgy and their approach, and they do have specific ambassadors that they have partnered with that go out and talk about how difficult it is to live with cancer and how much we need drugs that are less harsh. And so you can apply to be a partner or an advocate ambassador with them specifically. And uh, then they will allow you to have some resources to go out and talk, maybe do some public speaking. And I think it's mostly awareness raising around just the symptoms and, and making sure that doctors know and don't minimize the intensity of the quality of life sacrifices that we make, as cancer patients. So it's kind of a political issue, I guess, in the medical space and it's a very, very niched focus and I think it's really cool. Okay. That's a lot. Now, I wanted to say too that a lot of advocates that I know will also do their own. Research into how to go and find people in their own places, their own cities and towns that are doing important work in breast cancer.

And I would say that that happens on a very grassroots level just by looking and listening and learning. I have learned so many. Different labs that are doing cancer research. Well, a lot of 'em are gonna lose their funding in October because of all the crazy governmental cuts that have been happening.

But right now there are a lot of universities and a lot of cancer centers that are doing very good research. And if you have a specific interest in a certain type of research, either a type of cancer, breast cancer that you are passionate about or. A certain type of approach, like a lot of us are more interested in the more holistic trials and what we can do with lifestyle and not as drug centered.

So you might find a lab in your community that is doing the kind of research that you're most interested in, and you can as. A free agent as an individual human, you can partner with them as an advocate in various ways. Also, it would be best to go to a training like the Komen Advocates in Science or Project Lead first so that you can speak the language and kind of get the, the lay of the land.

But even if you didn't there, there's a chance to learn from them. Get a tour of their lab, for example. Just let them know that you're available. If they ever want a patient's perspective, if they ever wanna bring in a patient advocate on their team in one of their research trials or studies, you could be available to them to do that.

So I have an example of this that my friend Anna lives in Tucson and I was learning because I'm a a nutritionist, I'm involved in integrative oncology talks and seminars all the time. And one of the experts on, uh, exercise oncology that I was learning from in one of my seminars happened to be stationed at, I think it's the University of Arizona or something in Tucson.

And my friend Anna, is interested in holistic. approaches to breast cancer, and so I emailed her and said, Hey, here's the name of this guy. He's just down the street from you. You may want to talk to him. Just email him and see what he's got going and if he has anything that you could help him with. She had already been trained a little bit to be an advocate to, to be confident in the advocate space.

And so she reached out to him and I'm not sure how it went, but that is, is kind of some of the connections that don't happen really super easily until you start just kind of placing yourself in the breast cancer community and the scientific community in particular, which you can do by going to annual conferences.

And the best one to go to is in San Antonio. So in San Antonio. The world comes to one place every year in December, early December, usually, and talks about what they've learned about breast cancer. So everyone who's studying breast cancer of all types comes and in all ways. So not just with drugs, but with lifestyle.

Also, they come together and there's just thousands and thousands of people learning together about breast cancer. It's just the most amazing environment. I just love it. And it's pretty affordable for an advocate to go there. They get a reduced rate. I think I paid like $50 or something like that, maybe $60.

But you do need a sponsoring organization, so you have to be advocating for, or with a nonprofit or an agency, an organization of some sort in order to get that reduced rate. And you do have to pay for your plane and you know, your, your hotel and everything too, of course. But if you're. Advocating with an organization, some of the, those organizations do have money to help you get there and for your hotel and everything too.

And then there's ASCO, which is all of the cancers, which to me would be way too overwhelming. I don't have. Much desire to go and learn about all of the cancers myself, but somebody might, you might be interested in that conference. Um, but the, the new conference that I've heard about for the last couple of years that I really wanna go to, that kind of moves around the country, um, is the one for the Society for Integrative Oncology.

They have a conference annually. And I think it's in Chicago this year. I think it's coming up soon in Chicago. And um, so I'm not going to that this year, but you may see me there next year 'cause I'm really interested in integrative oncology and I'd love to, to see the best of the best in that space. Now Lobular breast cancer also has, um, well it has been annual, but I think it's gonna turn to every other year.

Starting this year, we're not gonna have one. But in the fall of every year, up until now, there has been, uh, the Lobular Breast Cancer Symposium, and it was in Philadelphia a couple years ago. And then last year I was overseas in Belgium. And next year in 2026, it's gonna be in San Francisco. And so I will definitely be there.

That's close enough to home that I can make it very easily. Now you can find little. Tiny organizations in your own community to do good work. Also, like I do a monthly craft night, uh, in a satellite group for people who live near me with a local breast cancer support organization. And I guess that's, that's kind of advocacy.

'cause when people come together, we end up doing education and we, we converse about resources. So I'm educating folks just by nature of being with them in person .

And you might have a local breast cancer organization that does a lot of good work, and maybe you can reach out to them and see where your talents match their needs and see if they need someone to lead a support group or if they need someone to lead a craft night or a walk. Um. Some kind of in-person activity that would support breast cancer patients that are feeling isolated.

That would be a great opportunity to, uh, be an educational advocate as well, because like I said, if you're being around people just naturally you're gonna be sharing your experience with them and their, your experience means so much to them. Um, being new to this space and being a new patient and just not having a whole lot of information.

So there are little ways to do educational advocacy as well that aren't as, um, I don't know, not as long-term commitment or reaching across the country and working with people from all over. So you can find little small ways to contribute as well. But that is kind of the summary of the more complex and intense ways to become an advocate.

I started this series because someone reached out to me who had lobular breast cancer or a type of lobular breast cancer, and she didn't know that she could get involved. She was just like, you know, "what do you mean when you say advocacy? You really mean that there's a room, room for me as a new patient to come in and do some work and just, you know, team up and partner up with others that have been there and, and really know a lot more than I do?" And the answer is yes, absolutely. Almost all of the organizations that I mentioned today are very happy to receive one more person on their team and to support you in the ways that they do.

So don't be shy. You know, introduce yourself to the executive director. Most of these organizations are quite small, and the executive director is, that's their job is to get to know new people in the community. Make connections. So they may not be the one that you work with long term, but you can introduce yourself to them and see where you might fit best in their organization.

You can always ask, even if they don't have the infrastructure to support you long term as an advocate or as a representative of their organization. If you're a fan of what they're doing, they're gonna wanna hear from you. They need that. They need fans. They need people to take their message out into the world, and chances are at least they would give you a gig, you know, tabling for them or support you and educate you enough to be a representative in your community.


I have a lot of interviews coming up, some really interesting folks. Uh, a long term survivor of metastatic breast cancer. Someone I'm really excited to talk to, Heather Jose is coming up soon and a couple of other new podcast creators from Australia will be guests of mine from Breast Case Scenario. I'm also going to be a guest of theirs and, um, have already recorded an interview with them for their podcast. So I will be following this one up with probably a couple interviews in a row since I've had a couple of non-interview episodes in a row.

So look for that. And of course if you don't know about my new Substack, I always wanna plug that. Make sure you look for me at abreastcancerdiary.substack.com. So that's just the website to subscribe and you can get that newsletter. It's a weekly newsletter or maybe three times a month in your email inbox.

And if you have the Substack app, you can follow me there without getting an email in your email inbox... and I will talk to you next week.

In this episode I got to interview a fellow youtube/breast cancer recovery coach and influencer, Marina Blackford! I'm so honored that Marina has been willing to spend this time with me. We talk about her story of lumpectomy AFTER mastectomy, her desire to run the NYC Marathon, and her insights into the spiritual side of healing from this disease. I'm so excited to share this interview, both here and on the official podcast youtube channel,  @abreastcancerdiary  

- Links:

Marina's fundraising page for YSC and the NYC Marathon: https://give.youngsurvival.org/marina

Marina's web site: https://marinablackford.com/

(No Transcript)

Watch on YouTube: https://youtu.be/agbu6QjDiXs

Support my work by making a donation here:

https://liberapay.com/abreastcancerdiary/

Links from today's episode:

Meryl's Instagram Accounts: @merymeryl; @thestoryofcaptaincharlotte; and @rompandrollick

Meryl's business email address for parent coaching: meryl@rompandrollick.com

This episode doesn't have a transcript. 

In earlier episodes with stories like Marquita's we've seen ways that Triple Negative Breast Cancer can be "not so bad" but in younger patients it's often the reverse. Meryl Opsal is my guest today, and she's got a harder story to tell about the effects of her immunotherapy. Meryl is a powerful woman, and if there ever was a cancer fighter she is my image of one. She and her family have been through so much, and they are still going through it, but they are managing well together. Stay tuned for a follow up episode in which we will talk more about the new immunotherapy drug called Keytruda that's showing a lot of promise for triple negative patients.

Watch on YouTube: https://youtu.be/agbu6QjDiXs

Support my work by making a donation here:

https://liberapay.com/abreastcancerdiary/

Links from today's episode:

Meryl's Instagram Accounts: @merymeryl; @thestoryofcaptaincharlotte; and @rompandrollick

Meryl's business email address for parent coaching: meryl@rompandrollick.com

Meryl's website: https://www.rompandrollick.com/ 

Transcript:

Kathleen:

Today's guest is Meryl Opsal. She's a mom of four and eight year old kids, an education consultant in early childhood education and a podcaster that I listen to every week as a bedtime story. Her podcast is a delightful children's adventure story that just started around the same time that my podcast started called The Story of Captain Charlotte, and I highly recommend it, whether you're an adult or a kid! Her story grabbed me on Instagram recently, and she's my first guest that is really. pretty much a stranger to me. I haven't gotten to know her very much. I trust her because she is an amazing storyteller and a very vulnerable person with regard to her cancer journey. And she has an important story to tell. I asked her on to talk about her experience as a triple negative survivor. She has endured triple negative breast cancer, ductal breast cancer and was diagnosed with stage 3C, which means that she had extensive lymph node involvement and she's been through the ringer with her treatment. And that's the main story that she has to share today. So Meryl, welcome. I wanted to ask you about your experience with the drug Keytruda, which is a new immunotherapy drug that has really been full of promise and hope for oncologists across the world. You have a little bit different story to tell about it and I wanted to allow you to do that here. So please tell us a little bit about your diagnosis and your treatment and, and how that went for you. 

Meryl:

Okay. I can definitely do that. And first I just want to say thank you so much for having me. I really appreciate it. I'm on a mission of education, advocacy, and demystification of breast cancer. And so I just really appreciate the platform to spread the word a little bit more. So really my diagnosis starts with my sister's diagnosis because my sister was diagnosed with triple negative breast cancer in February of 2023, which was a huge shock to my family because we really had no history that we knew of, of any kind of breast or gynecological cancers. And I went to visit her and help support her through some of her treatment. She's on the East Coast. She said, Meryl, you really have to get a mammogram. And I said, “don't worry. I just turned 40. I am going to see my doctor next week. I'm definitely going to get a mammogram. It's happening.”

I went to see my doctor and she did a full exam. I even remember that while she was feeling my left axilla, she was manually, you know, feeling, making sure everything was okay, and I was talking to her and I said, my sister was just diagnosed with breast cancer. She said, “oh my gosh, I'm so sorry. Definitely going to get you in for that mammogram.” I only mentioned that because she didn't feel anything and I wanted to just point that out because of how quick some cancers can progress. Some breast cancers, some breast cancers can be very slow and you have time and mine was not like that. Mine was not like that at all. It was like a bomb went off in my body because I had this mammogram and the mammagram was two weeks later, and there was already cancer in my left axilla, as well as in my breast, and I got a letter a couple days after my mammogram saying that I had dense breasts.

Now, I know that there's a new law that's around the whole country that you'll be notified if you have dead breasts. In California, that law already existed at the time, and it said, “please call us for a follow up ultrasound.” So I called the ultrasound place, and I said, I'd like to make an appointment. I got this letter, and they said the next available appointment is six weeks from now. And I said, oh, I was really nervous because of my sister, and I said, “I know it just says dense breasts, but I really, is there anything you can do?” And the woman on the phone said, “don't worry, if it needs to be stat, your doctor has the mammogram report, she'll call us and it'll be stat if it needs to be stat” and she said, “but just make sure that your doctor sends the ultrasound order because we haven't gotten it yet.” So, I kind of forgot about it. I was very busy recording for The Story of Captain Charlotte and running my business and I kind of, you know, moved on with my life. And I mean, I did notice that my left breast was starting to get bigger than my right. I googled it, you know, it could be hormonal, whatever. I kind of wrote it off. I kept reassuring myself saying the doctor has the mammogram report—she would tell me if it needed to be stat and I just sort of wrote it off and just said it's in my head “There's no way. I also have breast cancer right now. That would be crazy.”

So it comes to two days before my ultrasound I call and they say “oh no, we haven't gotten the report yet.” “Oh, that's surprising.” I called my doctor and they said, “Oh yeah, we'll send it right away.” So I go in for the ultrasound, and the most peculiar thing happened—they only took images of my armpit. It was really confusing, seeing as how I had dense breasts. And, uh, I've had two babies. I know what it looks like when they're measuring things on the ultrasound, you know, the tech can't say anything, but I'm seeing black spots, I'm seeing her measure them, so I just get this pit in my stomach. And on the way home I got a call and she said, come back, the ultra, the uh, radiologist wants images of your breast as well. And that's when I went and got my husband because I knew it was about to go down, went back, and got the ultrasound. quickly after that, got the biopsies and the staging and all of that. All of that moved quickly, but I actually really have no evidence that my doctor ever looked at the mammogram report. I don't know that she ever looked at it. It's really, really upsetting. I cannot, unfortunately, sue her for malpractice because the cancer at the point of the mammogram was already multifocal, meaning it was already stage 2, and so my treatment options wouldn't have changed.

K:

Wow.

M:

It's just this really unfortunate thing. I probably would have been staged. 2A, 2B, and instead I ended up being staged at 3C, which the law says, oh, well, your treatment options were the same, so there's no case. But just the lived experience of being staged 3C was so terrifying and so scary and I just really lost trust in medical providers at that point. And I think that's a good thing. Actually, I think people should have a very healthy skepticism that their providers are going to do anything for them that you expect them to do, even the bare minimum. And I think most people who have been through breast cancer have come to understand that—that we really need to be our own advocates. If there's a test, you need to make sure you get the results yourself. You look at the report yourself. You know, if a prescription needs to get called in. It's, you know, it might not happen. You need to follow up. You need to follow up always yourself. So that was the first time I really learned that lesson. Um, let me just have a sip of water—I need to constantly drink water in order to talk.

So the gold standard of treatment for triple negative breast cancer is called Keynote 522, it includes 12, uh, 12 doses of carbotaxol and then four of adreomycin and taxotere, which is also known as the red devil. And then through all of that—that's about six months. And then continuing for six months after that, every three weeks, you're supposed to get an infusion of Keytruda, which is a very new drug. It's an immunotherapy drug. And so I started chemotherapy in July.

I was able to continue running my business. I ran a very popular and successful parent and me business. So I taught classes to babies. Um, they came with their parents and toddlers came with their parents and it was my dream come true and it was beautiful and amazing and I loved every moment of it. It was very, very physical, very physically taxing. I was able to do it through the carbo taxol portion of the chemotherapy but then when it came to the red devil, the Adreomycin, I had to stop.

So around November of 2023, I noticed, (I noticed!) I was getting extreme like 10 out of 10 pain in my parroted salivary glands every time I ate. And. When I say 10 out of 10, I do not say that lightly. I, I gave birth to my second child completely naturally, and this was beyond. Quite a bit beyond. The amount of pain—I was blacking out. I was going into cold sweats. It was really, really, really painful. So I brought it to my oncologist. “What's going on with my salivary glands? Every time I eat, this is so weird.”

And anyone who's been through chemo knows the line. It's chemo. It's chemo. Everything is chemo. Everything is chemo. Oh, it's chemo. It's chemo. It's chemo. I've always shared my breast cancer story on my Instagram and I get a lot of really impressive helpful feedback from my followers and one of my followers has an autoimmune disorder called Sjogren's and she said it sounds like you might have Sjogren's. I had never heard of that before and so I asked my oncologist I said one of my friends said that it might be Sjogren's and she literally said to me “I don't know why we're talking about Sjogren's right now!” and we just moved on and she just swept it under the rug and then I finished my chemotherapy. December 26th was my last one and I had one infusion that was just Keytruda. And when you get just Keytruda, you don't get any of the premeds that you get with the chemotherapy including a steroid. Usually when you get chemotherapy you have a steroid as a pre-med I didn't know at the time that that steroid pre-med was protecting me from the Keytruda in a lot of ways even though it was still hurting me. When I had this one infusion, I think it was like January 16th—it’s funny how we remember all these dates because they're all so important.

Honestly like getting hit by a truck. Related to Sjogren's, um, in my body just went completely off the rails. I, within a day, stopped making tears, stopped making snot, stopped making saliva. There's a mucus membrane lining up your, your Your bladder that protects you from your, the, um, the acid, the acidic nature of your urine from burning your bladder, that went away. And so, all of these things happened to me, and then a week later, I had my double mastectomy. So I was very, I did not know what was happening to my body, and then I had the surgery. I was recovering from the surgery at my parents house and my parents are both in the medical field. And so we had a lot of time to talk about what was happening to me, not just with my double mastectomy—they took great care of me for that, but also all these symptoms, like I wasn't able to eat all these foods, I couldn't breathe. You need, anyone who's taken biology knows, you need a wet mucous membrane to breathe. I was having trouble breathing. There were multiple nights where I thought, “I don't know if I'm going to wake up because I can't breathe through my nose and I cannot breathe through my mouth because my mouth is so dry” and my dad did some research and he was the one that pulled up a case report saying that there's evidence of people getting Sjogren's from a similar drug to Keytruda, another immunotherapy drug. And so, we printed out, we found more case reports, we printed it all out, and brought it to my oncologist. I brought my mom with me, and we, we brought it to my oncologist and I said, This is what's happening to me. This is what's happening. And she went, “Huh, how about that? Immunotherapy does the weirdest things.” So that was the second time I learned that you really cannot trust your providers to do even the most basic things. Even the drugs that they prescribe that they're supposed to be experts on, they may not know about. And it's not advisable to Google a lot of things around breast cancer, but there are some things where you really do have to—you have to Google, you have to be informed. And I really wish that I had when my, like in November when the symptoms first happened in my parotid salivary glands, that I had really started googling that and pushed her a little harder to send me to a rheumatologist. So luckily now I'm under the care of quite a few doctors. I have a special eye doctor, I have a few rheumatologists, and I'm on a whole bunch of drugs. But unfortunately it seems like a lot of the symptoms are permanent. So what happened to me is called an immune related adverse event and when you're talking about immune related adverse events, uh, permanent is described as symptoms that last over a year. So, my symptoms are going to be permanent in that respect, but also probably permanent in a more colloquial respect, like probably forever. It is possible that my body will heal, but it's such a new drug, and there's really no reports of this resolving. Very, very few people have gotten Sjogren's from Keytruda. I actually have never met anybody that's gotten Sjogren's from Keytruda. It's just these case reports that I've read. It's much more common for people to have issues with their thyroid, their kidney, their pituitary, um, other types of autoimmune issues. So, I really don't know what the future holds in that respect. Yeah, so that's, that's pretty much how I was diagnosed and kind of what was going on with the Keytruda.

K:

Did your Sjogren’s affect the way that you healed from your mastectomy?

M:

Yeah, oh yeah, I mean, ever since the first symptoms of the Sjogren's, I have not been allowed to have just breast cancer. I have breast cancer and a serious autoimmune disorder. And especially at that time when I didn't know what was happening to me, I didn't know how to eat. I've had to completely relearn how to eat because, not like literally how to eat, but the things that I can put into my body and successfully chew and swallow. Because I have such a small amount of saliva. All my favorite foods, all the things I was used to eating, uh, my ability to casually snack, you know, all of these things completely went out the window. And after surgery, it's very important to nourish yourself with healthy foods, to eat, to make sure you're eating enough in the day, even if you're not feeling good and that was a struggle. That was a real struggle because I also wasn't able to cook for myself. I was at my parents house. We already eat very different diets because my parents eat meat. I don't eat meat. And they're kind of like, “I don't know what to do. What do we cook for you?” already and then there was this also surprise thing, which is like all these things they were trying to make for me. And then I literally couldn't eat it. It was so frustrating. And the bladder pain was really off the charts because I did not know what was going on with me at all. And it was to the point where I was having trouble walking. That's how much it hurt. And really, I should have really just been focused on the intense pain and discomfort that I was going through from my double mastectomy, which was almost a side note to this mystery thing that was happening to my body. So, yeah, I mean, absolutely. Absolutely.

K:

Your actual wounds, um, and incisions did heal pretty well though. They didn't have trouble healing?

M:

Well, I actually did have some trouble healing because the treatment for this type of immune related adverse event is prednisone which can delay wound healing. And so when I went to see my oncologist with those case reports saying this is what's going on with me and what I need is what it says in there is prednisone, so you have to write prednisone a prescription for prednisone for me. And she said, okay. My plastic surgeon found out and he said, you have to go off the prednisone immediately. And it had already at that point caused some wound healing and I needed a couple extra stitches in one spot. It, it, yeah, it caused a little bit of a delay, but everything eventually did heal up fine.

K:

Did you get, um, implants or did you get a flat closure after a mastectomy?

M:

So I currently have tissue expanders. And, um, planning on having them exchanged for implants in January.

K:

And how's that gone? Has your body responded okay to the expanders?

M:

Yeah. Yeah, I would say so. I mean, expanders are notorious for being uncomfortable, and I can confirm that that is true. They are uncomfortable. However, most of my breasts are numb. So, the discomfort is probably mitigated by that a little bit, because I can't feel a lot in that area of my body. Um, but yeah, overall it's been, it's been okay. It's been okay. I am very much looking forward to the exchange surgery though because I've heard the implants are a lot softer and they'll be more comfortable. So I'm, I'm really looking forward to that.

K:

And when is that? Is that pretty soon?

M:

That's in January. So, um, after I finished chemotherapy and my surgery, I had 29 rounds of radiation and there's some sort of complicated math problem about how quickly the radiation leaves your body and they figure out exactly when you're able to have surgery and it's usually around nine months after radiation you can have surgery. So that's why I have to wait until January for that exchange surgery.

K:

And how was the experience of radiation for you?

M:

Um, radiation was hard. Radiation is kind of, kind of a mindfuck because unlike chemotherapy where it's very concrete, there's a medicine, you're seeing it go into your vein, you feel it. Radiation. It's like, it's invisible, you know, it's invisible, but in your mind, you're like, it's radiation. Like, know, you think of Hiroshima or something like it's, it freaks you out. And then there's also the aspect of it where you're on a table, exposed, alone, in a room. And something I did not know about radiation, that I know now, is that they need you to be in the exact same position every single time because of, they have it like all mapped out on computers and they need it all lined up perfectly. It's all very, very precise. Which is good, because we don't want our heart or our lungs radiated. But one of the ways in which they keep you in the same place is they lock, or at least I should say for me, because I know different places do it different ways, but for me, they created this mold of my mouth and my neck, and very, very tight to my mouth and my neck. And then that's clipped, locked onto the table. So it's literally this like mesh, hard plastic mask that locks your head onto the table. So you're exposed, alone, locked to the table, unable to move. It's extremely vulnerable. It's extremely vulnerable and you have to do it every single day. So it's just this unrelenting schedule. Your entire life is overtaken by this schedule of radiation. And for me, I didn't really see anything happening for a while. And then when it got to the last 10 days, I would say of radiation, the skin in my armpit started to give up, say, see ya, all fell off. I had third degree burns in my armpit and it was really painful. The armpit is a hard place to have burns because it's really, really difficult to bandage, really, really difficult to keep it still. So that was very, very painful. And then when I was there, I would, I would keep my arm down all the time. But then when I was there, I had to lift it up and stretch the skin and it was so painful. And then to know that I was getting more, it was really hard. It was really, really hard to get through. Um, but I got through it and I got to ring the bell and that felt so good. That was the end of my active treatment. It was such a relief to be done.

K:

How long was your, the span of your treatment? When did it start and when did it end?

M:

I had my first chemotherapy at the end of July in 2023. And then I had my last radiation in Early May. So, that's how long it was.

K:

Thank you for describing that. I think for me in some of the procedures that I went through, especially the different biopsies, just knowing what to expect was the main thing. I don't care how gruesome it is. I just want to know what they're going to do to me and what it's going to feel like. So I really appreciate you reliving that for the sake of the listener that is brand new and hasn't gone through that yet.

I know it's hard to hear, but it's better than not knowing in my, in my way of thinking. So thank you for that. I want to talk to you a little bit about your medical system. I know your parents are both medical practitioners and probably advised you about the best place to go in the first place and whether or not to change, get second opinions, get a different provider. Did you switch providers ever, or did you feel like you were already in the best spot to begin with?

M:

So, when I was getting diagnosed, I was on the phone with my sister, who was in bed recovering from chemotherapy, and we had a spreadsheet. And we had a plan. If I was diagnosed, which it was looking very likely that I would be, I would have the numbers of who to call right there, ready to go. And my parents actually didn't advise me in this area, because they're actually, they're actually not practitioners in, in my area. My mom is retired. She used to work in clinical auditing at Johnson and Johnson. So she knows a lot about medications and how they work in the body. And my dad used to be a pediatrician and now he works for an insurance company doing imaging requests. So he knows a lot about imaging, which is good. So those have all, those have come in handy. They've come in handy, but they don't, we're not actually from this area. So we, we don't know the, the medical system here all that well. So my sister did a lot of research for me and we identified two of the top oncologists in the area and I met with both of them. One of them was out of UCLA. I'm in Los Angeles. So one of them was out of UCLA and the other one was out of City of Hope. In, it's actually pronounced Doherty, but I'll say Duarte because I really don't like saying Doherty and that's their main campus, which I'm very lucky that I live about 15 minutes away from the main campus of City of Hope.

K:

Oh, wow. Yeah.

M:

So with both of those providers and I eventually decided to go with City of Hope. And the reason for that is because it's kind of a one stop shop. I'm really glad that I actually made that decision because I've heard from other friends who, maybe don't live in a metropolitan area. They have an oncologist, they have to go find a plastic surgeon. For me with city of hope, they know how to do breast cancer. You get on the ride and you just go, I didn't have to make any appointments for myself. I didn't have to think, when should I schedule an appointment with my plastic surgeon? It literally just popped up. They just make the appointments for you. They know exactly the timing, how to do it. And you just have to kind of give yourself over to it. Of course, always making sure things happen. You know, we learned that lesson, right? We have to make sure things are happening, but it's to a large extent, city of hope takes care of it. And the other thing I really liked about City of Hope is that they have their own, um, ED emergency department. And so you don't have to go to just your local hospital and then explain to them, I have cancer. I'm going through chemotherapy, blah, blah, blah. And they don't know what to do with you.

At City of Hope I did have to do this twice. I was admitted twice during, during chemotherapy. I was admitted to the ED twice. Um, and that was really, really great to be able to go, they have your whole history, they can contact all the doctors very easily, and they obviously know exactly what to do in the case of neutropenic fever, which was one of the reasons why I was admitted, and the other time was from bacterial pneumonia. Um, so they know just how to treat patients who are, who have a compromised immune system and have these types of problems. So I was really happy. I never, I never switched any of my doctors. I was really, really happy with all of them. I mean, I've been very lucky. I think it's a very different situation for people like I said, who don't live in metropolitan areas. Like my sister, my sister lives in Western Massachusetts and she had to drive three hours every single week for chemotherapy to go to Dana Farber in Boston because she just didn't have any good options near her. She wanted the best, you know, she wanted the best treatment obviously. And so she was just driving all the time, all the time, three hours back and forth, both ways, three hours, one way, three hours, the other way to get chemotherapy. I feel very, very lucky that I live so close to such a, a good cancer center.

K:

Yeah, that's amazing. And City of Hope is exclusively cancer. It's a cancer center only, right?

M:

Yeah, that's right.

K:

Okay. So how did you deal with the shoguns then? Did you have to go outside of City of Hope to get help with that?

M:

Yeah. And that is one of my sticking, kind of problems or sticking points that I spoke with my oncologist about recently. City of Hope does not have a good, I would say, rheumatology department. And I really feel any quote unquote comprehensive cancer center that is giving immunotherapy should have a rheumatology department/group on site, right? Because a lot of people have immune related adverse events and they need a rheumatologist that is familiar with both oncology and rheumatology. so I was sent to UCLA. They have a really good rheumatology department and so my quote unquote local rheumatologist is out of UCLA. My special eye doctor is out of UCLA So they can all talk to each other. Now I have a neurologist. Um, and so they're, they're, they're all in the same system and they can collaborate really easily. But that actually wasn't good enough for me because my local rheumatologist had never met anybody who's had an immune related adverse event from immunotherapy and she really did not know what to do with me and she was treating me more like a primary Sjogren's patient which most people who get autoimmune disorders It comes on very slowly over years and then they start to notice something's off and then they'll maybe go see their rheumatologist a couple years in to having their first whispers of a symptom but for me, that's not what happened. And So she, she was treating it like I was having a Sjogren's flare, and that's just not exactly what was happening to my body. And so, I became aware, through the Sjogren's expert at UCLA, I became aware of a doctor, Dr. Katsumoto, out of Stanford and Stanford has an interdisciplinary group that is oncology-rheumatology. It's one of the only ones in the country, and I was able to make a telehealth appointment with Dr. Katsumoto. I had to wait, I think, four months for the appointment. But when I did eventually get to see her, she was the one that finally was able to help me because this is what she does all day. She either helps with patients who have autoimmune disorders and are diagnosed with cancer or people like me who acquire autoimmune disorders from their cancer treatment. So she knew exactly what to do to help me, and I feel very, very lucky that I was able to be treated by her.

K:

Yeah. Do you do online appointments mainly then?

M:

Yeahm she’s at Stanford, so that's, um, that's upstate. It's like near to San Francisco, I believe. So, yeah, we do telehealth appointments only.

K:

Have you ever met her in person or is it always been telehealth?

M:

No, I've never met I've only had two telehealth appointments with her. Yeah,

K:

Oh, that's so great that you could access her that way so easily.

M:

Yes, very, very lucky.

K:

Well, before I want to ask you about your family and your kids, but before we move on to that, I want to ask, it sounds like you have stated already very clearly that your main regrets in your story have been that you didn't follow your intuition and start advocating for yourself a little sooner, both with your screening and with the Sjogren's incident, is there anything else that you want other brand new cancer patients to know about that you wish you had known?

M:

Um, well, I, when I was first diagnosed, I was really, really hoping that I would continue, be able to continue to work. Cause like I mentioned, my business was so important to me and I had many clients that were dependent on me and so I wish that I had stopped working sooner because what ended up happening is that I basically, um, worked myself into the hospital. I, like, I had mentioned that I, I was admitted with neutropenic fever and I really believe that was because I worked too much. I was trying to do too much. I was trying to keep up normal, you know, keep going, and it was not appropriate. And that's kind of been a theme in my life, where I sort of work myself into the ground or try to do too much. It's a lesson I've really had to learn, is to slow down when you need to. You can circle back when it's all over, but, you know, when you're, especially when you're going through chemotherapy, you really, really, really need to slow down.

I did not take it as seriously as I should have. I mean, I knew I would be nauseous, I knew I would lose my hair, I knew all of that, but I didn't realize, I didn't realize how close to the edge it was gonna take me. Twice. That was a surprise to me. Um, so yeah, that would be definitely another thing to note is to slow down, to take the chemotherapy serious and you're not going to be able to continue your normal schedule that you need to kind of ask your family and friends for support to, to do even really honestly, the most basic things.

K:

Do you feel like that was informed by the stories of others or seeing others with cancer on Instagram? Or did you have any way of pacing yourself that you were kind of measuring against someone else?

M:

Um, no, not really. I mean, my sister was, my sister was going through chemotherapy. We had some overlap at the same time, but she lives very far away. I did, so I didn't really in my face get to see exactly what she was going through, but I did know that it was hard for her. But she tends to put on a brave face, so I don't think I ever really heard like exactly how hard it was for her. It's really just the pressure I've always put on myself just to do everything. All of it. So much. All the time. That's a big part of my personality is just to always be go, go, go, go, go, and always be doing five things. And, um, it takes, it took chemotherapy to get me to stop, you know, just stop, stop everything, you know.

K:

Yeah, I think that's a common personality trait for us. Breast cancer survivors. You hear that type A is, is very common among us. So certainly it was true of me. Yeah,

M:

So interesting.

K:

Did you have any support groups in your life during chemo or after?

I was made aware of that resource while I was in chemotherapy. But I wasn't ready to join a support group until I was done with chemotherapy. I felt that I talked to my therapist. I had a therapist. Luckily, I was already in therapy with a trusted therapist. Um, I already had a psychiatrist and a psychologist.

I already had the mental health team in place, which was really lucky. but I spoke to my therapist when I was in chemotherapy. She suggested I join a support group. And I told her I'm really not ready yet because I was having such a hard time. Being stage 3C and then the difficulties that I was having with chemotherapy, how it was really, like I mentioned, it was really, really, really hard for me. And I do feel that I came pretty close to honestly dying twice because of it. I felt if I'm in a support group with someone who's like, you know, not staged as high or isn't having as hard of a time or didn't need chemotherapy, that I would have really big feelings about that. and so I waited until I was through chemotherapy and the bitterness was a little bit more resolved. And then I joined a support group and I'm in a support group now, um, through that organization I mentioned and I, it's amazing. I really love it. It's really, really great to be able to hear other people's stories and, you know, You know, provide real time feedback, share, and find that some things that happen to me happen to you too, and I don't feel as alone. people ask questions, and you're able to, you know, provide some insight from things that we've been through, so it makes those experiences feel more valuable, because, oh, I can now tell you about it, and you don't have to feel so alone, or, It doesn't have to be a mystery to you anymore. so yeah, I've really enjoyed being in that support group.

K:

Do you feel like that's the main way that you deal with your trauma or your PTSD from all of this?

M:

Um, no, definitely not. Um, I have a therapist. She helps me a lot. I don't think I've really to really, really do any hard work on the PTSD from it because I still feel I'm so in the middle of it. I still ha this Sjogren's thing is still unfolding. I'm still in the middle of trying to treat it, figure it out, see what's, what's going on with it. Still have so many appointments. And I still have my exchange surgery coming up and who knows what's going to happen with that. So I still, even though I'm done with active treatment, I still feel very much in the middle of, like the trauma is still happening. And so it's kind of hard to process that until you have like a little bit more distance. I think in a couple years I might be able to feel into that a little bit more. My, I would say honestly, my main way of dealing with it is disassociation. I, from the very beginning when I was diagnosed, I have disassociated hard. Um, yes, and it has, it, it, I know my therapist has told me it's an important thing that your nervous system is doing to protect you. You shouldn't be scared of it.

K:

It's amazing.

M:

I try to remind myself of that when I'm, when things happen and feel like I should be crying and I'm not because I actually feel nothing. Um, I think what's wrong with me? And I'm no, it's not wrong with me. My nervous system is protecting itself. It's okay, Meryl. You'll cry later about it. Um Yeah, so that's what I've honestly the main way I deal with it and medication.

K:

Thanks for that. Okay. Let's talk a little bit about your family and the dynamics and your kids, how you've sorted through just how to talk to them and love yourself also.

M:

Yeah. When I was diagnosed, my younger son was four and my older son was eight. I would say being a mom of young children and going through the treatments that I went through is probably going through being the hardest thing that I've ever had to do in my life. It's already hard enough to be a mom, and it's already hard enough to be a breast cancer patient in the situation that I was in. But those two things don't really combine well, you know, it's, it was extremely difficult, um, because, and then also just with my, I have a master's degree in early childhood and childhood education. And one of the main things I was focusing on in my classes is how to talk to children in a developmentally appropriate way. All of my work is around, um, developmentally appropriate instruction. I thought very, very deeply about how I was going to talk to them about it and what I was going to let them know. I was very, very purposeful the whole way through. The first thing that I did was I primed them by letting them know that I was having the biopsy. And letting them know that I was going to have a boo boo on my breast and we would have to be careful around it. That was on purpose. I think some people might think, oh, just keep that to yourself. Don't say anything until you're diagnosed. But I did that on purpose because I didn't want the diagnosis to be a huge surprise out of nowhere. I wanted them to kind of know there was something going on so that when I did eventually tell them, they would know that, you know, there was something leading up to this.

I talk to my four year old about it a lot differently than I talk to my eight year old about it. And it's, for parents, it's very much case by case with your kid, where they are developmentally. But my eight year old is, has always been highly verbal, is highly intelligent, and is very, very interested in science. And so, kind of took that, that road with him, the science road, when I was explaining things. So for him, I said I think there might be something wrong or sick inside my breast and they need to take a little sample of it to test it under a microscope and see if it's sick. And then with my four year old, it was, “there's a boo boo and mommy has an owie and we have to be careful with her breasts now.”

And then, um, when I was eventually diagnosed, first thing, I didn't tell my four year old right away, I spoke to my eight year old and I said, “have you ever heard the word cancer before?” And he said, yeah, I have. And I think it's really important to first see what a child already knows, see maybe what misconceptions they have, and then fill in the blanks, you know, kind of go off cause you don't want to overwhelm with information.

So kind of just see what, what they already know. And unfortunately there was a mom who had passed away from breast cancer the year before in his school, and so that was his association. That was the basis of his knowledge. Um, but I let him know that not everybody dies from cancer. Um, I let him know, you know, remember when I got that test? It came back that I do have cancer inside my breast. And he said, “okay, well, why don't they just cut it off?” said, “you're so smart. They're going to.” And he went, “what?” And I said, “yeah, you're thinking just like the doctors, not yet, but eventually they are, they're going to take, do surgery to get it out. That's exactly right.” I said, “but the first thing I'm going to do is I'm going to have to take some really yucky medicine—it has a kind of funny side effect.” Because I knew, especially with kids, the main thing that they're really going to focus on is what's concrete, what's right in front of them. And that is that my beautiful long brown hair was about to go away. I said, “it has kind of a funny side effect. And the side effect is that it's going to make all my hair fall out.” But before I had told him I was prepared, I had put a call out on my Instagram to send me photos of beautiful bald women. And I have, and I still have it on my Instagram as a highlight reel. And so I had the highlight reel already of all these beautiful, gorgeous women, bald women, all different shapes and sizes and looks. He was like, Oh my God, really? You're going to lose your hair. And I said that I am going to be a beautiful bald woman. Would you like to see some other beautiful bald women? And he said, yeah, sure. And so we went through the, all the pictures of all these beautiful bald women. And he was like, wow, they look so cool. Like Natalie Portman in V for Vendetta. She's so cool. And yeah, he was, so he was excited. He was like, okay, great.

And Halloween was, um, coming up. It was July, but my kids start thinking about Halloween in July. And he said, you could do a really cool Halloween costume with your bald head. And I was like, yeah, that's a great idea. He was excited about that. So that was, that was sort of the first way that I spoke to my eight year old about it. And I also told him in that conversation, really the science, more of the science of cancer, their cells, you know, cells divide. He said, Oh yeah, I know that. And that some are dividing too fast and they're making mistakes. And it's, you know, it's, um, and it's going to make me sick. And, you know, explaining it in that way.

With my four year old, I just told him “mommy's booby is sick. There's something sick inside mommy's booby. And so I have to take yucky medicine. And then I said the same thing about the funny side effect of me losing my hair” and showed him the bald pictures. Um, but if you know any four year olds, you know, it was kind of like, yeah, okay, for five minutes I'm locked in. I get it. And then it's sort of in one ear out the other very egocentric, totally normal for a four year old to not really care what's going on with anybody else except for themselves.

And to some extent that was a benefit, you know, he wasn't really overly concerned with what was going on with me. I was going to chemotherapy while he was at school, so I think it was more the ways in which I changed as a mother that my four year old picked up on. I mean, it was not just picked up on, it was blatant in his face. I was his primary attachment. I've always been a very hands on mother, um, because of my business and my expertise and specialty. I've just always wanted to be that stay at home mom, really in there with my kids emotionally, taking care of their every need. And suddenly was not able to do that. So my four year old picked up on that, and he, over the course of my treatment, experienced quite a regression. I would say now, he is definitely, um, has a bit of a delay with his emotional development. His emotions, he's five now and he's emotionally much more like a three and a half or a four year old. When people go through trauma, sometimes they can get stuck, you know. In their developmental phase with children, especially we see that, um, and I think that's what's happened to him is he's a little stuck at three, three and a half, four, and we're going to take this year to really try to heal and get back to normal.

Yes, and then my eight year old, um, with each different phase, I didn't tell him “first I'm gonna have chemo, then I'm gonna have surgery,” you know, I didn't go through all the steps, it was what was present, what was in the moment, what was happening in the moment, and then I waited to tell them about, I was really nervous about the surgery, cause they're very physical, you know, two boys are always wrestling and they always want to jump on me or have me pick them up or carry them and all this stuff. And I was really, really nervous about them hurting me after my surgery, which is why I went to my parents house immediately post op. And I was at my parents house for 10 days. It's the longest I've been away from my kids. It was really, really hard to be away. And I'm very, very thankful for my husband for stepping up and just solo parenting for 10 days. And once, once I got my drains out, I felt like I could be around my kids. It was when the drains were in that I felt they could pull it by accident or, you know, make it pop. And you know, all this kind of gross stuff that we do not want to happen. So once my drains were out, I came home and I had told them before I left that I was going to have surgery on my breasts and that they were going to be really painful and tender for a while, and we practiced safe ways to hug me.

So with my four year old and my eight year old, I got on the floor and I said, okay, so imagine you can't touch here. How can you hug mom? And Sidney, my younger one, went around the back and hugged me from behind. We practiced side hugs. I said, when we read at night, you can't sit in my lap, but you could sit and lean on my arm. Um, and we practiced all the different safe ways to touch me and they were very good when I came home, they remembered, they, they took really, really good care of me and were really, really careful. And I mean, with breast cancer, nobody wants breast cancer. Nobody wants to have to deal with any of these things, but what an amazing lesson in taking care of someone you love. I wish they didn't learn that lesson right now, you know, maybe in a few years. But they did, and they, they took amazing care of me, and they were really, really careful, and I think it was that prep work that we did that was so helpful in the moment.

When I was going through radiation, I honestly didn't even mention it to my younger son because it's so abstract. I really don't think he would understand. I explained it to my older son again, from the science point of view, because he was interested in knowing about that. And then I let them both know when I was done with active treatment that I was all done and that I was, I was all better. You know, I was, uh, I, I didn't mention this before, but, um, after my surgery, when I got my pathology back, I did have a complete response to the chemotherapy. And so after my radiation, I was able to tell my kids that I was cancer free and, you know, we were all very happy and excited about that. But there's definitely been, there's been a, there's a long lasting stain, I would say, on the emotional life of my family because of it, and we're still, we're still recovering from it. still yeah. Yeah, especially my younger son.

K:

I can see you as you're talking. I can see like listeners in the future coming to you for support and advice in this area. Have you thought about doing work with cancer patients around parenting?

M:

Yes, absolutely. I have thought of that, so I mentioned that I was not able to continue teaching my classes through my company romp and rollick and I've been the whole time in treatment since then thinking about what I want to do with that business. And I have in the past I've done quite a bit of consulting work in different areas. Some of it has been with families, supporting them in different ways. And so I would just add support through cancer diagnosis to one of the other ways I help families with currently, which is like behavior issues, feeding, education issues, sleep issues, you know, all those kind of sticky areas with early childhood. And yeah, I'll just add cancer diagnosis to that list for sure. I'm, I'm available for that. Yeah, I'm, I'm already available for that, that support.

K:

Cool. Yeah. I can see that you would have people lining up for that because that seems like something that is very needed in our community.

M:

I think so because um, you know when you're when you're a parent you're not given a manual on how to have kids, you know it's this crazy thing that everyone talks about—you just go home with a baby and they're like good luck! For all of the quote unquote normal things that parents go through there's you know There's huge amounts of information online now. There's people who are selling their courses on sleep training, but then there's also Facebook groups and Instagram content providers that talk about all these different normal, quote unquote, normal parenting things. When it comes to parenting through chronic illness or parenting through something like a cancer diagnosis, there's a lot less information.

I had mentioned before I had a really hard time with chemotherapy. It was extremely hard on my body. And I also really tried to maintain normal. And I think that that's really important as a parent. And that's one of the hardest things about having a parent with cancer, being a parent with cancer is that you don't, you want this to be an adult problem, not a kid problem. So they really shouldn't see all the suffering. They don't need to hear you complain that you're nauseous. They don't, they really, it should not be, they're busy being kids. Don't put it on them. They don't need to know. But unfortunately, sometimes when you literally cannot eat, they're going to notice. So there was a day at dinner, Where I could not eat what my husband made, there was just no way that was going to happen. I was so nauseous. So he made me some oatmeal and I was even having trouble eating that. So, but I wanted to sit with my family at dinner, you know, trying to maintain normal. You know, that's when we, my every day we have dinner together. It's really important to me. Talk about our days. Was sitting there trying so hard to eat the oatmeal. And my eight year old came up to me and he put his arm around me and he said, “Mom, It's okay. Just eat a little bit. You're not gonna die.” It just broke my heart. Um, because he was so worried about me, obviously. Um, Thinking that, you know, if I don't eat, I'm going to die. Cause I did lose a lot of weight and I was, I was not looking good. And I had already at that point been in the hospital once. And just to hear how worried he was for me, this is when I was doing the red devil. So at that point I decided that I was, after my infusions, I was going to be at my parents house for my worst days. So, um, from then on for the, I think the last three infusions I went to my parents house for about three nights during the, the worst days because I just didn't, I, I just had a long conversation with my husband and I thought pros and cons, mom's gone—that's really hard, but you don't have to see me thinking that I'm about to die. That's probably better. Um, and then for my husband, I'm not going to be here, but I'm not going to help anyway. I'm a patient at that point. You would have to take care of me. So how about I just go to my parents house, they take care of me, and then you, instead of having to take care of my kids and me, you can just take care of the kids. Um, and that would be advice that I would give to any parent. If you have a support system nearby, and you're able to step away during your hardest days of chemotherapy, it seems unthinkable to parents to purposefully miss time with your kids, especially when you're going through something like this and you might be thinking about your mortality a lot and how much time do I really have with my kids, but it is really important for them not to see us so sick because they don't understand that you have to go through this really hard period to be better. You know, they just think you're really sick, you're gonna die. You know, it's so scary. It's so so scary and so that is what I did for the rest of my chemotherapy and like I said, that's what I did after my surgery and I wish I could do that after my next surgery, but unfortunately, that's not available for me anymore because this summer my mom was diagnosed with ovarian cancer And so she can't be my caretaker anymore because you know, she's, she's going through her own things. So I'm gonna have to figure out something else for January for when I have my extreme surgery. That's something that I'm talking to my husband about right now is, what are we going to do about that? Who's going to take care of me?

K:

And that reminds me to ask you about the study that you and your family have learned about and entered yourselves into. Can you talk a little bit about that?

M:

Yeah. So I had a meeting with the genetic counselor at City of Hope and she was flummoxed by me and my sister having both having triple negative breast cancer. We were both tested and have absolutely no genetic markers for predisposition to cancer. And my genetic counselor has suggested that I get my RNA tested which I really can't speak on I don't understand I haven't really googled it yet, but I recently gave a blood sample for that. She said sometimes we can find things in the RNA. So I'll be interested to see about that and then I mentioned to her, you know, since I had first made the appointment and did all my paperwork between that time and the appointment, my mom was diagnosed with ovarian cancer. So I let her know and she said, Oh, well, um, there is a study out of the university of Washington. Um, I wish I knew the doctor's name, but it's the same doctor who identified the BRCA1 genes. She’s looking for more genes. And so families that have a history of at least three people who have breast or gynecological cancers, they can submit their blood and get the whole genotype and they keep it on file and they basically use it to try to identify new genes. And I think she called it the mystery family study, which is kind of a cool name. And so my sister and my mom both agreed. And so we're all submitting our blood samples and the genetic counselor at City of Hope said to me, unfortunately I can't tell you why you've got cancer now, but if you call me back every two years, I bet over the next 10 years, I'll be able to tell you why. So I thought that was really interesting that, you know, they're, they're identifying new genes all the time. And I, it would be so cool if my family was able to help, to help with that. Because it's really, it was especially when it was just me and my sister being diagnosed five months apart. It, it was so confusing. It is still like, so confusing. Like, why is this happening? We have no history of breast cancer. Is it environmental? Is it genetic? And they just don't have the gene yet. And it, it would be really, really great to know why.

K:

Yeah. Well, we've reached the end of our hour, and I wish that I could ask you a few more questions, but I'm going to keep it at that. But I definitely want to hear all of your handles. I know you have at least three Instagram accounts, just like I do. And I don't know if you want to share all of them, but I enjoy all three of them personally.

M:

Thank you so much. So, um, I have my own podcast, as you mentioned, it's called The Story of Captain Charlotte. It's a nautical adventure series that's not just for kids, a lot of adults enjoy it too. And you can find that anywhere where you find your podcasts, The Story of Captain Charlotte. You can follow us on Instagram at @TheStoryofCaptainCharlotte. I also have my personal Instagram where I share my all of the information about cancer and my Sjogren's, and that's at @MeryMeryl; then I have my business Instagram, at @RompAndRollick, and that one I'm not very active on right now. I'm still, like I said, figuring out what I'm going to do with that business. Um, but if you go on there, you will see some, a lot of very, very beautiful photos of children enjoying sensory experiences and child directed art and story time. And it's a beautiful Instagram to look at. And hopefully you'll see more there soon.

K:

Is Instagram the main place that you connect with people?

M:

Yeah. Instagram is. Yeah.

K:

Cool. Well, thank you, Meryl, for being such an open hearted storyteller and sharing so much of the hard parts of your story. It's really important to me to tell different sides, even though, as you've said, Sjogrens is a very unusual side effect of keytruda, I think your story is so important and. I'm so glad that you were willing to share it here.

M:

Thank you so much for having me.



​

Today I'm reflecting on last week's interview with Anna Hopkins, who spoke of Breast Implant Illness and the experience of going flat after 18 years with implants. 

Support my work by making a donation here:

https://liberapay.com/abreastcancerdiary/

Watch this episode on YouTube here:

https://youtu.be/ABRIwo1uo2I 

Links from today's episode:

Breast Implant Illness Articles and Resources:

https://www.breastcancer.org/treatment/surgery/breast-reconstruction/types/implant-reconstruction/illness/breast-implant-illness

https://www.healingbreastimplantillness.com/ 

Anna's YouTube Channel: https://youtube.com/@closetlady?si=73mWb6L4ipUc13fE

Anna's Instagram account:https://www.instagram.com/closetladyflatfashion/

Transcript:

Today, I want to reflect on last week's interview with Anna Hopkins, if you're watching this podcast on YouTube this week, you will notice that I have a lot of my stand tall materials behind me and on me. we just got our new banners for the new breast cancer awareness month and all the walks this year in October and, uh, had an early walk this year in Oregon.

So I got the banner a little early and I've got it on the wall behind me cause we just had our kickoff rally for stand tall for the year. Stand tall is the main flat organization that I'm affiliated with and it's really just present at breast cancer walks and Advocating for flat awareness, flat visibility and flat pride in the community.

That's not our official mission. That's just my words. But you can see that our slogan this year is "Two, One, or None,. Let's stand tall together" so we're not. Pitting ourselves against people who've had implants. We are standing United with them as people who've been through breast cancer and had mastectomies.

And, that's really what Anna and I were talking about this week or last week on the podcast. So I thought I would include that in my YouTube presentation. My t shirt here is Wendy Sage, who has been the stand tall mascot, and she's holding a sign that says body positive with a pink ribbon on it. A lot of us flatties have resisted the pink ribbon because of all the controversy around it, but I think we're finally most of us are embracing it now as the sign of our community as a whole, even though it comes with a lot of baggage.

So, check out Stand Tall AFC and their new website. They've got an amazing directory of flat resources, both flat walks and flat groups that you might want to find in your area if you're interested. But Anna's story was primarily around the incidence of breast implant illness.

And this is something I am not an expert in. I don't have a lot of research background in, and so I'm going to point you to resources in the show notes for that one. This is something that has been very shrouded in our community of breast cancer survivors up until recently. With the advent of Facebook and Instagram and the sharing of resources there, we have been able to identify, in our community just so much more quickly.

Those people who have gotten sick because of their breast implants. I'm not going to quote any statistics because they're ever changing, but a good amount of people who get breast implants are not able to live with them long term. They have, mostly autoimmune reactions as Anna did. And of course, not until Anna actually had her second set of implants taken out, did she learn about her breast implant illness and, identify that it was her first set of implants that started her down that cascade of what she thought was allergies ended up being autoimmune issues and her second set of implants. She had an even more strong reaction to, but she lived 10 years with them nonetheless, and lived with all of those symptoms for all those years.

And then was kind of set free from them in the end when she. decided after 10 years that she wanted them out a lot of people in the flat community are what we call Explanters they are people who have had implants in the past and have gone flat after having implants I didn't realize that when I first joined the flat community.

I thought most people were like me and Had gone There's a phrase for it, straight to flat. I don't ever use that phrase, but it is a phrase that is sometimes used to differentiate those who have had explants in or implants in the past and had them explanted. And those of us who just went directly to after mastectomy to flatness like myself.

And so I would say out of everyone I've met in the flat community, Probably half have explanted after having implants for a significant amount of time and being very, very uncomfortable with them physically. Some women are also uncomfortable with them psychologically, kind of the way that I and Anna have described.

Not feeling ourselves when we're wearing prosthetics. Some women also feel like they're not themselves wearing implants, but usually it's more of a physical symptom, physical sickness, and really it's largely autoimmune kinds of symptoms that people get when they're afflicted with. Breast implant illness, which is actually a thing.

It's a medical term. And like I said, I'll link to some information in the show notes.

Another part of Anna's story that I wanted to reflect on is the fact that her doctors, when she insisted on getting her implants out, her doctors then did the extremely bullying and psychologically abusive move of sending her to get a psychological evaluation. And I'm so grateful that Anna was willing to tell that part of her story.

It is a very shameful and humiliating experience to be sent by any medical professional to have a psychological evaluation, especially after you've made it clear to them that you are uncomfortable with part of your body that's been causing sickness and yet it is pretty common even in these last few years, much more common, I think decades ago, but as Anna shared, not even that long ago, um, in, at least in her region, it was considered normative to send a woman for a psych eval after her expression of discomfort with her womanly shape is how I think the.

medical professionals interpret it when really it was just the implants that she was having a problem with. If they could have heard her more distinctly and, um, clearly, I think that's what she was expressing. So, she didn't talk a lot about how that made her feel, but I just, I just wanted to honor the fact that a lot of women go through that very, very Painful and insulting process, and it really is medical battery, in my opinion, to do that to any person to pretend that their, their desire for change or for healing, implies that there's something wrong with their mind or their emotional health.

I loved Anna's, very kind of visceral and physical description of her saying goodbye to her breasts and her realization that they were going to be changing and that she wouldn't have that relationship with her nipples. Um, and I just wanted to also kind of point out that just really poignant part of her story.

And. And the loss that we all go through, especially when we just don't really know what it's going to feel like to not have our natural breasts. Um, there's a lot of fear of the unknown. I think that happens before mastectomy.

And then I so related to the part of her story where she talked about being pleasantly surprised after mastectomy and being delighted with the childlike power that she had, um, her word was power and. Uh, the power of, a, free and joyful little girl and just being herself and not having to carry the baggage of all the, womanly associations and sexualized associations that we carry as grown women.

I think that's worth pointing out. I certainly relate to that myself, and that's definitely a part of my joy in being flat myself. I think another part of the interview that was really important to me was connecting with Anna over my memory of being with her. I first met Anna in a yoga class that she was teaching as a part of a retreat for flatties in Palm Springs.

And she was teaching us Kundalini yoga. And it was, I think my second time taking a Kundalini class and I was just so struck with her beauty and her grace and calm. And, the next day we went to a breast cancer walk together with stand tall AFC. And, Anna decided to take her shirt off and it was the first time.

And she'd been to walks before where women had taken their shirts off as flatties, but that was the first time she was willing to do so herself. And I just happened to be walking next to her when she did it. And wow, I mean, it just bowls you over the emotion of that. Experience being surrounded by other women that have lost their breasts and them all also feeling the heavy and also the light implications of that experience of sharing one's body.

I want to talk a little bit about what that's like because it's, it's easy to forget kind of the novelty of what it's like to be in a breast cancer walk and see another woman, especially a flatty without her shirt on. You tend to think as someone who's grown up in the Northwest where there are nudists.

And, you know, nudity is not completely unheard of there are, um, mostly hot springs, I guess, around here that are allowing of nudity. And so I've been around some nudity and I'm sure there are nudist communities too, but I've never been a part of that. And then I just went to Burning Man, my last, episode, actually, before Anna's interview was.

about my experience at Burning Man and Burning Man is a place where nudity is allowed. And I probably saw a dozen people over the week that were nude, not a lot. Um, some of them riding bikes and some of them walking, some of them partially nude if they're women and fully nude if they were men.

And this is different when you're at a breast cancer walk. It is not the same feeling as seeing someone who is exhibitionally being nude, in public. It's a much more vulnerable, much more tender kind of experience by necessity. There is no exhibitionism of it. Um, in terms of like what I'm reading or what I'm feeling when I'm experiencing it, it is just pure vulnerability and sharing.

And I personally, when I'm around someone, Nude in the context of Burning Man or Hot Springs, I tend to look away. I don't feel comfortable looking at their bodies, but in a flat Community context, I have learned that it is safe to not look away, and it is actually welcome to look at each other's bodies and appreciate the little differences in the outcomes that we received surgically and to comment on those.

That's a welcome thing in our community. It's just a, it's been a really safe community for me and my friends. And that's a part of our stories that may not. Seem relatable to the average person listening to this podcast, but I just want to reiterate how important it's been to me for me to feel the freedom in our podcast to tell Anna how beautiful her flat closure was and to acknowledge the fact that I had looked closely at her body.

It's not a common experience and it's not something. That someone like me and my culture and my social upbringing, would normally feel comfortable doing, but it's really important and I feel pretty strongly about it. Especially when someone has a really nice flat closure. It's. It seems really important to me to compliment them on it and to compliment their surgeon on it, because it is so rare in our community to have an aesthetic flat closure, which is what AFC stands for.

And as is now a medical term that we can refer to when we're talking to surgeons, there's still an ongoing battle to get. Aesthetic flat closure in the surgical setting. A lot of surgeons are fearful that they will not be reimbursed adequately for it. And we're still working on legislation to correct that and to get that written into the women's rights,

bill or act that is allowing for insurance to cover or demanding that insurance cover things like implants, and so, at Stand Tall AFC, we are advocating for the allowance of language to add, chest wall reconstruction to the verbiage in the women's, rights and reproductive act.

I probably haven't said that correctly, so I will refer to the act below in the show notes in the correct form, but, that's one of the new platforms that Stand Tall is working on with an organization called Not Putting on a Shirt, which is actually their umbrella organization. So Anna's flat closure being a true, aesthetic flat closure with no extra skin, no lumps and bumps and ripples and dog ears, which is what we call this little, area that if you're watching on YouTube right now, you can see on my underarm.

I've got a little lump, just a little one. Most have bigger ones. I can't really complain, but little lump of extra fatty skin that, would normally have. Sat right above my breast and under my underarm. That just kind of sticks out and that's really, really common. Most surgeons will tell you it's unavoidable and unfixable.

Certainly all of my surgeons have told me that, but Anna having been a woman who was quite thin and yet had quite large breasts, she was able to, Actually achieve a true aesthetic flat closure with no extra lumps on the side or ripples, at least not any obvious ripples. I'm sure, like she said, she still sees a little bit of bumpiness and lumpiness when she looks in the mirror.

We all see some kind of imperfection, I'm sure, but I just, I love that I am free as her friend in this community to comment on her body and commend her surgeon for the good work that he was able to do for her in that way. And I hope that we can all push our surgeons to strive for better work in that area.

None of us want to go back under anesthesia and get revision after revision after revision. I certainly don't. Um, But it's really important to get it right the first time so that we don't have to go back under anesthesia and feel like we're being petty to go back and ask for part of our body to be taken off after surgery.

So that's that's a really important platform that I will stay on and get back on that. soap box probably pretty frequently on the podcast. It's a big one for us. Flatties really important.

Anna talked about how important the flat community has been to her online and how she started her career as an influencer, a fashion influencer on Instagram and YouTube because the other flatties really encouraged her to keep going with her fashion experiments and sharing her photos. And like she said, she was painfully shy.

Going into this experience and she has now gained a real following and has a lot of fans that really thank her for their comfort in their clothes as flatties and their ability to play with fashion and experiment and share. Together with others, and so Anna has become a really pivotal part of the flat community online unexpectedly, and, she really gave a lot of credit to the folks that came before her in this community.

And I just want to share how open this community is to other women that have lost their breasts. It's really a very accessible community. And like I said, Stand Tall has an amazing directory of different flat groups all across the country and across the world. It's growing all the time. And if you want to see some flatties in person, whether you're a flattie or not, you can find the places, where we are present at the Stand Tall website and places where we've gone and walked in breast cancer walks before together.

If you're here in the Northwest, we have. A lot of presence in Seattle and Portland. There's a Medford walk this year that will be pretty well attended, I think, too. And, maybe Centralia. There's a new walk that's just surfacing in Centralia, which is halfway between Seattle and Portland. We might show up to that one as well, but the main one in Portland, if you're local, that's happening this year is at the University of Portland.

It's the Making Strides American Cancer Society Walk. We'll have a table there for stand tall. I will be at that table if you'd like to come by and say hi. It's at University of Portland in North Portland. And rumor has it that most of our Flattie troop will be there. So we'll be there Representing with our shirts off.

So if you'd like to see some flat bodies Watch for that in person or online. There'll be some pictures. I'm sure that'll come out online Sometime during the last week of October That walk will be October 20th, I believe so Anna will not be there, but I will be there and, my Portland Flattie group will be there.

And Miriam, who I interviewed last on the podcast will be up at the same walk in Seattle, the Making Strides American Cancer Society walk in October .

And she'll be at the table as well. So you can see Miriam as a half flat woman. She's still got one breast, but she'll be, I'm sure wearing a bikini or a half a bikini so that she's got one of her breasts covered and the flat side showing.


So again, I just want to give Anna, lots of credit for being a big part of the flat community and more visible part of the flat community online and kind of holding that banner high for us in her fashion ways.

She just has a really particular niche and a special gift and a real playfulness around it too. She's got so much humility. She doesn't claim to be an expert or to know anything about fashion, you know, in terms of, right or wrong, but she just experiments a lot and has fun with her clothes. So I definitely, encourage you to go and check out, Closet Lady Flattie Fashions on Instagram and YouTube.

So hopefully you can find her there and you can interact with her there too. She's really responsive. If you comment or ask questions or if you have a question about fashion or a quandary or a dilemma or something she hasn't covered in any of her short tutorials in the past. Next week, I am interviewing. My friend, Meryl Opsal, she is a new friend. She's a fellow podcaster and pretty recently on Instagram, just telling her heart wrenching story of some of the side effects of her medication from , having triple negative breast cancer.

Meryl is a truth teller and an amazing storyteller. And so I hope you'll tune in next Wednesday to hear her story. It is more of a typical story with chemo and radiation being an awful, gauntlet to get through and Meryl does it with so much grace.

And she also talks a lot in our interview about her parenting journey and how she's learned to talk to her kids about her breast cancer experience as they see her suffering through it, and just being real with them, with the right language.

So yeah, check out my next interview next week on Wednesday with Meryl and I'll talk to you then.

My friend Anna Hopkins tells her story on today's podcast episode--a story of Breast Implant Illness that ends in her fully embracing her new breastless and flat chest as a flat fashionista. Please see the links below to learn more about BII and its auto-immune disorders, common among women with breast implants. 

Links from today's episode:

Anna's YouTube Channel: https://youtube.com/@closetlady?si=73mWb6L4ipUc13fE

Anna's Instagram account:https://www.instagram.com/closetladyflatfashion/

Read about Breast Implant Illness here: https://www.breastcancer.org/treatment/surgery/breast-reconstruction/types/implant-reconstruction/illness/breast-implant-illness 

Fierce Flat Forward, Thrivers who Thrift, and Flat Out Love are the facebook Groups that Anna mentioned using herself.

Transcript:

My guest today is Anna Hopkins, my good friend from the flat community. Anna and I met a year ago in October at the Palm Springs flat retreat. And we've been connecting ever since both on the topic of flat and of lobular advocacy. Anna is a retired dental hygienist. She lives in Tucson, Arizona, and she was diagnosed in 2008 with ER positive, stage two, invasive lobular carcinoma, which we haven't talked about too much on the podcast yet. Her initial lumpectomy in 2008 was followed pretty quickly after by a double mastectomy in 2009 and then she went flat, a whole 10 years later in 2019. She goes by “the closet lady” in her videos on both YouTube and Instagram. And so we'll talk a little bit about her work as an advocate for flat fashion. And Anna, I just want to welcome you to the podcast. We've been planning this for so long. Thank you for coming on and telling your story today.

A:

Yes. Thank you so much for having me Kathleen. I so appreciate being able to be here and share a little bit of my journey.

K:

Yeah. So I want to talk about some of your initial diagnosis details and decisions. You happen to have a lumpectomy first, and then you had a real big change of heart quickly after that. And I wanted to hear about that first as you're telling your story today.

A:

I happened to be watching a show and, um, they were talking because it was breast cancer awareness month in October. I thought, Oh, I should, you know, do a self exam. And I did. I was quite surprised when I actually found what felt like a pretty good sized lump to me, and I was somebody that had already had implants in my body. So, um, it was not always easy to do self exams because of those, and they were saline implants at the time, and I had had them, I want to say, for probably about eight years at that time. So I found the lump and went in to have it looked at. They couldn't find it. Um, the radiologist technician could not find it on ultrasound and I kept telling them that there was indeed something there. they eventually brought in the actual radiologist who had to do the ultrasound themselves and they did verify, yes, that there was indeed something there. And I, from that point, opted instead of having like a needle biopsy, I had begun my research immediately and, and, you know, understood there was like false positives and negatives with needle biopsies and that either way the lump needed to come out. So I just went immediately to the surgical route and said, please remove the lump. So they removed the lump and that's when the diagnosis came back. Really, relatively within two days that it was indeed positive for breast cancer and you know, lobular breast cancer is what they told me when I went into the office, you know, and then things kind of become a whirlwind really quickly. I was assured when I found my team that it was okay to take some time to kind of do a little research because apparently they said that the lump probably had been there for about three to five years they also, I'll never forget this statement that one of the things they said, they said, Oh, it's, it's a great thing that you had implants in your body because it helped push the lump forward so you were able to palpate it and feel it. So I was kind of immediately like, cause I, I kind of felt benign about implants before like it was no big deal.

I had nursed my children and my breast, I felt, you know, less than as a woman and I had wanted, you know, to make them look better again. So that's why I got the implants. So I was thinking, Oh, these things are wonderful. It even helped me discover my own breast cancer, you know.

I also came into that at the same time having a long history of allergies that seemed to be continuously building and more problems. I did have a great oncologist, I will say, um, he did tell me because of my allergies and things that I had at the time that he wanted to kind of confer with, you know, he was on a board and he wanted to talk to the board. That was kind of, you know, doctors from all over the states, and he wanted to sit down with them because of my long history of allergies and rare kind of conditions already. He also told me at the time he said, you know, I'm kind of concerned that possibly the chemotherapy would be, you know, would be the thing to kill you before the cancer even. So that kind of stuck with me. There were just some, you know, some statements that stuck with me. I mean, social media groups were in their infancy and I didn't belong to any at the time and research online was not as perfected as it is now. And just not the amount of information available, not that it's always accurate, but it was harder to kind of weed through and find anything anyway.


At the time it was pretty adamant that it usually will mirror image and the other breast, you know, if you have lobular, that kind of thing. So I was like, okay, which was a really strong point for me to, to advocate for a mastectomy on both sides. Even though I was being told by my team, you know, let's just do the lumpectomy, you know, and if anything, you could take the one breast off. And then my oncologist at the time, though, I will give him this credit again, said, you know, there's really only a 2 percent benefit if you're going to do this chemotherapy and you need to weigh if that's going to be beneficial enough for you.

He was seemed to be a little more on the cutting edge kind of information about lobular where he told me that the benefits weren't great and also given my allergies. And he said, and he literally looked me in the face, which I still to this day feel so grateful for, and he said, you know, I have to tell you that the protocol is that you need to do chemotherapy. He said, but I want you to know that I'm not going to lose any sleep if you choose not to. And it was kind of like giving me permission to do what I felt was already the best thing. And it also kind of. Um, not only empowered me, but solidified the information I had found.

K:

And your tumor was, you said two centimeters. So it wasn't a tiny tumor. It was definitely palpable. So that's interesting.

A:

Yeah. It was 2. 5 centimeters. Yeah.

K:

And your, your impression is that it was because it was lobular and lobular doesn't respond as well to chemo. That is the reason why your oncologist said that?

A:

Yes. And there was very little information about that back then, but there was something, because I, I had really gone down some holes and, you know, finding, I just, it's just what I do. So, you know. found everything I possibly could and I'm grateful that I was able to find something on that.


K:

Sure. So you decided on a double mastectomy against their wishes. They were trying to encourage you to at most do a single mastectomy. How did you land on the double mastectomy decision?

A:

I did not want to approach, um, fearful of, um, a mammogram every year. And is it back? And then I've got to go through this whole procedure again. To me, it just made more sense to take them both off. I mean, it, it to me felt like a risk that I just wasn't willing to live with, you know, in a more, it didn't feel peaceful to my, uh, sense of what thriving would feel like.

K:

Yeah. And so did you get implants at that time when you had the double mastectomy?

A:

Yes. And I, and I really have to say, this is a part that I really felt a lot of shame in because, you know, feeling so, you know, interested in, you know, research and really wanting answers and knowing how important health is, you know, with the way we feed our body and all those other things. I felt really shameful that I somehow missed the component of implants and the toxicities that might've existed within them. You know, and then I also try to remember to be kind to myself that remember I was given these messages that, you know, hey, it saved my life. It helped me find the breast cancer. And so I, you know, had a friend who was actually a surge, a plastic surgeon of all things and his mother had gone through breast cancer and he himself assured me how safe these were now because they'd been so extensively researched and they'd just been re released and I should feel so good about having him in my body now. And he showed me, you know, how he could cut them in half and they no longer would ooze everywhere in your body. You know, he went through the whole thing and this was even a friend of mine and I was being told this. And so I really bought it hook, line, and sinker and didn't think further through it. Yeah.

K:

So you mentioned that you had some shame after that, after you had received the implants, how long did it take you to learn about breast cancer illness and the toxicity?

A:

My gosh. For years. So, you know, in my, my, to get the implants reconstruction, my body, you remember I had implants prior and I think I was accumulating issues. You know, my allergies were increasing all these things. And then they'd name, of course, put the silicone implants in my body. Cause they're like, you have just skin left, there's no fat, you know, these aren't going to be as ripply. It's going to be better overall. So they put, you know, the expanders in my body. My body rejected these expanders. Initially, they told me they would be in my body for maybe three months, you know, and they constantly were, you know, putting more fluid in, more fluid.

Cause I had all this extra skin to fill up where, you know, my breast had been before. And the skin kept dying and blackening. I kept having infections. They kept, you know, swabbing them. They couldn't figure out what the infections were. I mean, I was miserable and yet they pumped it full of fluid all the time with all that going on. And then they would do surgery and cut out the dead tissue and continue on and sew me up. And it became so tight with the expanders. And they kept assuring me that, Oh, it'll be better when we get them out. And you know, we'll put the implants in and all will be well. I had that for nine months. They took the implant, you know, the expanders out, put in the implants and, you know, subsequently you can imagine I started the journey with of course, hearing from my oncologist, Oh, they look great. This is a wonderful result. You know, and I'm thinking, I look disfigured and horrendous, but they kept, you know, I looked great in clothes and that seemed to be all that mattered to everybody. And then I was, you know, looking like a normal woman. And, you know, also. newly married, you know, for a year, I felt the pressure of like I needed to make sure I had breasts for my husband.

I continued for 10 years with incredible pain and I would always go in and say they're so tight. They're uncomfortable and they would always assure me. Oh, it's fine. You're gonna, you know, you're aging. You're gonna have other issues. You know, it's not the implants. They're safe. I kept, you know, at one point within the last couple years, I kept saying it doesn't feel right. Like I feel like something's wrong and you know, once I decided on the explant, finally, you know, at the 10 year mark, I was like, and I knew, you know, they're only supposed to be good for 10 years. They kept assuring me, Oh, they can stay forever, though the data said otherwise.

And I said, I had to then, you know, of course go through the battle of, “I want these out of my body and I want them out at all costs.” You know, I didn't know anything about flat closure. There was no information that I had found about it other than that people that were dying and had no option to live were kind of, you know, flat because they were, you know, had given little time left on earth. And I said, you know, I don't care if I'm disfigured, please get these out of my body. I knew that I was ill and I was very ill and it did not match my lifestyle. Like there's no reason I should feel the way I did and have the issues I had when I lived the way I did.

I mean, I'm such a, I mean, a lot of people might think it rigid, but I mean, I'm not someone who is waivers and cheats or, you know, my lifestyle was so clean and so healthy. So I knew that that was the last thing and I wanted them out, so I didn't know about breast implant illness still even at that point but I did find a surgeon that told me about it.

K:

So you were probably really shocked after the explant then after you took your implants out, how well you started to feel, I imagine.

A:

It was, it was immediate. I had no expectation. I did not know, you know, of course, I'm still thinking, well, this may be better. I don't know. Immediately my range of motion was incredibly improved and I was still recovering under anesthesia and you know, wounds and things. I could already feel the difference. People would see me and they would say, “What? I mean, your eyes,” like I didn't realize how the physical toll it had taken on my body. They would say, It looks, have you lost weight? I mean, it looked like I lost 30 pounds. I was swollen from the inflammation in my body from those implants. The surgeon at the time who ended up operating on me was wonderful microsurgeon.

And he did tell me about breast implant illness and he said, I do believe that you have this. So yeah, it was miraculous how much better I felt. Yeah. It was miraculous. I felt like a whole new human being, even though I still had some chronic issues, I kind of felt like I was going back to the me before I ever had implants on my body. And it was, just so amazing.

K:

So I want to hear about your experience with flat closure, not just the surgery and the outcome and how it looked, but how you felt going into it and then how you felt later coming out of it.

A:

I was scared. I didn't know anybody else that was flat. I didn't have any pictures. Um, I didn't have any information. I just knew it was what I needed and I expected to come out disfigured and that I was just going to be okay with that. so I, you know, that was scary.

Part of that journey that really stood out for me was I was referred to my general practitioner when I was trying to find a plastic surgeon that would remove them because my oncologist office. You know, didn't want me to do it. And nor the breast surgeon that had initially operated on me. so, they referred me, um, to my general practitioner, where I just went in for, I don't even know what I was going in for, just to check up.

And they were, basically they gave me a psychological evaluation, which I was completely shocked and astounded, and did not even realize what was happening until They left the room and I just, I didn't even have, and I didn't have a voice to even ask them or question them. I just walked out of the office, stunned, honestly. Um, and then I found, you know, a space, a space of anger thinking what is going on, but it did not deter me from my determination to get them out of my body. Um, so it's kind of like that, you know, advocacy for myself kicked in again, where I knew what was better for me and I was really going to stick with it. like when I was first diagnosed, but I had missed this on it. So. the right surgeon through a couple referrals and talked to him at length about wanting them out of my body. He did kind of consider if I had enough fat, you know, to kind of do the DIEP flap and all that stuff. He said, you do not have enough fat to do that and it would only give you at best a size A.

I said, listen, I don't want that. It's not worth it for me at all. I don't want that surgery. I'm willing, you know, whatever it takes to be disfigured. And so he just agreed he would do the best he could and we left it at that. When I awoke, you know, it was astounding to me, I was a different person already. Um, it was astounding to me when I saw, you know, my scars for the first time. I have pictures of when I first saw them and the drains coming out of my body. And it was hard. I mean, I had been so defined by my breasts as a woman, you know, not only was it something that, you know, people considered me so, you know, voluptuous and beautiful with, I also, for me, what was the most difficult thing for me and part of my journey was the crying of losing my breasts when I went through it initially, because I nursed my girls, my children with them. So to me, it was a really hard letting go of something that was so important to me that nurtured my children. I was driving into my convertible car of all things. And the rain started pouring down and it was like, you know, kind of like, you know, the universe speaking to me and allowing me to grieve it fully. My nipples hardened at the time because it was chilly and it was rainy. And I started bawling even harder because I thought I'll never know what this experience is. experiences like again to feel you know, something that's so natural we don't even think about it about our nipples hardening for whatever reason. It was just really a huge grief process, and I still feel teary when I talk about it, because it was powerful. You know how important breasts are to our, our, you know, definition of ourselves sometimes as women for many reasons. So yeah, that was a big experience. But leaving after having a flat closure and seeing my, my scars for the first time, I kind of remember feeling this surprising sense of acceptance that I didn't expect to have. And again, I hadn't found the flat communities or anything like that. And I remember feeling powerful because my daughter was seeing me as a powerful woman still with no breasts. And she's a young, young adult woman at this time. And she had lived with me through breast cancer and it was very traumatic for her.

And now as a young woman to see me make this other decision and to feel powerful as a woman still. And I felt like this power of this little girl that I once was who was never defined by breasts or anything when you're a little girl. You're just a little girl. You're just Anna. And I felt like just Anna again. I can't really put words to it still. It was so powerful and it kind of is what carried me through the challenges of the healing, you know, the lumps and bumps, the redness, you know, the things that you deal with, the taking of the drains out, all the things that are hard, like how do I dress? All those things. So yeah, it was super powerful. And yeah, then I remember thinking, gosh, I should, maybe I should go in and see what it's like to have a prosthetic. And I remember spending a few hours, the women were lovely. They showed me all these different shapes and sizes and all these things. And I thought, When I remember putting them on, I remember thinking, gosh, these feel so weird and awkward. And I feel like they didn't feel heavy, but I was like, everybody's going to know these aren't real breasts. It's interesting how your mind does these things. I wanted nothing to do with them, but I still took them home thinking, how could I ever feel comfortable in these? What if they fall out? What if they move?
Like it was such a weird thing for me. And I also didn't feel comfortable walking around flat at the time. So it was really kind of, you know at home and healing and trying to find my place in the world now.

K:

Yeah. So I first encountered your body four years after you went flat. And I remember my first thoughts. So I was there when you first took your shirt off in public for the first time at the breast cancer walk in Palm Springs last year, I was standing right next to you. I don't know if you remember that, but it was really.

A:

I don’t! It was like a blur!

K:

Yeah, it was super profound for me seeing someone else do that for the first time. So, um, it was an emotional moment and I remember thinking how beautiful your body was. It was very well healed because, you know, it had been that many years. But you didn't have any dog ears. You didn't have any ripples. You know, your chest was really beautifully done. I thought. Did you have the same feeling once you did experience all the photos on Instagram and compared yourself with other women? Did you have some pride in the outcome that you had received or did you have other surgeries to make it look more flat?

A:

Yeah, no, I feel like I was so fortunate somehow in finding the surgeon that I did and that he kind of under promised and over delivered and I was surprised when I began seeing, um, others like myself, which was so healing to is such a big part of my healing journey, and I didn't feel critical of what they had, and I didn't feel pity, but I started seeing because I think it was before there was like legislation and things to really kind of, you know, protect us and to give us options that we deserve, you know, as women to have our body look a certain way instead of just being at the mercy of whatever the physician could do or thought was best. So I did feel, “wow, I really am fortunate, you know, that my body healed so well.”

And then I was fortunate with all the damage that had been done to my chest, that he still was able to repair me the way he did. And I do feel, yeah, that I'm very lucky and fortunate to have outcome that I've had. Yeah, because I can imagine going through the journey myself how much you know more of a challenge that presents when you're left with all this extra skin and you're you know, you're wondering why like why why does it look like this? Did it have to be this way? You know, like, yeah. So I think it's, it's, it's really, yeah. lucky thing for me, honestly. Yeah.

K:

Yeah. So I want to hear about the transition from that moment when you went flat to becoming who you are now, which is kind of a, an advocate in the public eye, like really, really advocating for not just flatness, but a feminine brand of flatness. So we're not just, seeing you on your videos, talking about accepting your new body, but you are flaunting your new body in a very fashion forward feminine way, which is not something we see in the flat community a whole lot. So where did you get that energy for this new kind of advocacy and body positivity?

A:

I wish I knew. I feel like it has been such an evolution for me. Like when I started this journey, I could never have imagined this being the place that I would land. So yeah, it's been so interesting to just kind of watch. I feel like I've grown so much on this journey and I really, again, being a painfully shy person and initially when I first started taking pictures, you know, there's some people that stand out for me in the community that kind of gave me a lift and empowerment and, you know, to try to maybe be flat for the day or, you know, or to try things on and you know, I love that we could share fashion and like, how do you wear something and what do you feel good in?

And, and I started like, I had never even taken a selfie prior to this ever, like I was not that person and I was never in pictures because I was always taking pictures of everyone in my family. So it was, you know, I didn't consider myself photogenic. People say, “Oh, you take awful pictures.” So it was really like a thing for me to like do this and I would do it in my closet, which is crazy. I've always loved clothes and I've always loved fashion, but I never thought I was particularly good at it. I always thought I was just kind of weird and I liked all kinds of strange things. And, you know, kind of was like a way to like embody maybe a character because I'm shy. And so I could feel powerful in that moment of like, Oh, I'm this today. Even if I feel quiet and shy, this is a way for me to speak without, you know, and I feel, I feel powerful in a way. And plus I'm artistic, so I think there's a piece with that. So yeah, kind of like having a space where I already had a lot of clothing and accessories and things and going through the transition of like, should I just get rid of everything or do I, you know, so I started like that thinking I need to get rid of everything. Then I kind of stopped and I slowed down and I, during my healing and kept everything. And then I started trying things on when I was seeing other people online and I would learn to take a picture of myself with the help of other people in my closet.

And so one of the flatties started calling me, “Oh, look, it's, it's cause a lady again” because I was in my closet taking my picture, you know? Nobody needs to look like me or to have my same journey or any of that. But I wanted people to realize like, gosh, no clothes can really be powerful. Like you can feel good in anything you wear or you can feel awful, you know, and it kind of can enhance how you're already feeling in the day. So I kind of just. You know, I went through that journey myself and realized how powerful my clothing was for me and how I discovered that. Gosh, I hated ruffles before. And wow, I really like ruffles now, especially in the beginning because, you know, I was still really struggling. Like, gosh, I feel like even though, you know, people will say I have a really nice closure, I still have like lumps and dips in my mind and I didn't feel so great when my tee shirt was really tight initially. And I like wanted to feel a little better. And so I would wear something with ruffles and I was like surprised. I was like, wow, like I really liked the way I look and feel in this. I can do this. And it just kind of, you know, again, continued to snowball from there. And I kind of discovered like a whole new sense of style for myself, too, with things I never had worn before and it no longer was about appealing to like the male gaze, it was appealing to my inner sense of who I am. Yeah.

K:

Yeah. And I noticed that who you are and what you need changes from day to day. And I love that, that you give us permission to wear prosthetics when we're feeling the need to, um, not be flat visible or flat advocates in a visible way. Um, but you also seem to have a lot of joy and maybe—I don't know if this is true, but I noticed that more and more as the months and years go by, you have a lot of joy and pride in your flatness and your natural body shape now. Is that true? Or am I just making that up?

A:

Yeah. I really have like embraced my body and I actually love being flat more now than I ever did because I journeyed through wearing prosthetics more, you know, at the time, but I also always feel like it's such an important message because I lived that journey to never like diminish or discriminate within our own community because I don't think there's a right way to do flat. And I think there are opportunities to really be visible that are so important. And if you can participate in that, gosh, that's powerful, you know, but I think everybody's ready in their own time and some may never be ready, but I want people to know there's lots of options out there. So I want to share with you what I've discovered and which ones I liked and why, but I also, I really do. I love my body now. And I am so, so amazed at its healing capacity. I am so grateful that I'm alive. I'm grateful that I can share, you know, what my flat closure looks like if it's going to help just one other woman or person make that experience easier or help them on their discovery of what choice is best for them.

You know, it's just, it's a good feeling to walk around flat and to, own it, really just own it and know that I'm actually, I have never felt more feminine and more womanly. And I know that must be so hard to like imagine. And I don't want people to have to lose their breasts to discover that. But I am telling you, that is my experience. Like, wow, I've never felt more woman in my life without breasts than I did far more than I did with breasts.

K:

I want to hear more about that. What do you think that is rooted in? Do you feel like there is something about your breasts that were traumatic for you or associated with trauma or?

A:

I do. I do feel like breasts can really be traumatizing for us women because I think, you know, societally and without, you know, blaming any one particular component of society, I do think the message is, is that the shape of your breasts, the size of your breasts define how sexually you are and how sexually appealing you are and how fertile you are. And you know all the things that seem to be what define whether a woman has value in our society when she's young and then as she ages, you know, and how perky, can she keep them and all these, you know, these, these horrible messages that we get. And what gets lost in translation is like, who are we as human beings, right? And what is our purpose here and how much we have to offer in the, in our wisdom along the journey. I feel like it's almost like you go through all these hard things and like, it's like the pinnacle. If you're lucky enough to get to live to old age and have that moment where all those things you've gone through give you, you, you've like reached that moment of like, wow, like this is really where I wanted to be all along to embrace, you know, the beauty of actually being a woman has nothing to do with breasts. We are so much more than our body parts and I'm and it's so sad to me that that gets lost. I've really, you know, hope that somehow in my mission of empowering people with clothing and stuff that we get that I get to like help young girls or whoever realized that, wow, you know, you are not the way you dress because you can change that every day from moment to moment and your breasts do not define you.

You are so much more than that.

K:

Thank you. That's such such an important message. I really value that. I relate to that. I want to ask you about the place where you live because I visited you there last time I saw you. We were both in Tucson. We were at a retreat and then we went out to dinner and talked about lobular advocacy. And I noticed when I'm in Arizona, it's definitely more conservative state than where I live here on the West coast. Um, but it's also a little more like a feminista kind of place. Like you're, if you're a woman, you're expected to dress like a woman. You're expected to spend money on your clothes and look a certain way…. which is kind of fun in some ways. Like for those of us who've grown up in a super casual environment, it's kind of fun to dress up. And I enjoyed that part of my visit. But how do you feel people respond to you when they do notice your flatness in public where you live? Do you feel like there's an acceptance or do you feel like you're really challenging the societal norms or the social norms?

A:

I definitely feel like I'm challenging the societal norms in my community where I live. I think it's, I, I've never, you know, I don't see, even though it's not a huge city, it's a big enough city. I don't see people walk, anybody else walking around flat. I don't, I don't have people approaching me and saying anything ever, asking me questions. I do have people that look at me and it's not like a look of that where I'm feeling accepted. I think there's a lot of questioning that goes into it. I think you're so right about, you know, community and acceptance and you know, whether it's more liberal or conservative, you know, areas that you live in. It really does. And it is challenging, but it also kind of makes me more determined to, you know, kind of challenge that because I think it's super important to be seen that, you know, as a woman, women don’t need to look a certain way, right? To be a woman and to be embraced as such, or however they want to define themselves. Yeah. So it's challenging for sure in my community. Yeah, I wish it were different, but I think I always consider each of us like, you know, like the drop of water that, you know, the gazillions that it takes to make up the ocean. I think each one of us, we think that we can't make a difference, but I think without each little drop, it never is going to make a difference. So I'm just one of the drops and I'm sure there'll be more. And hopefully, you know, that change, you always want to embody, in my opinion, the change you want to see in the world. So that's what I'm trying to do. Yeah.

K:

And I know you have a local flat group, Arizona Flatties, that you're a big part of. Has that made you guys as Flatties a little more tight or bonded, do you think? Or how does that change the dynamic of your flat group locally?

A:

Gosh, I always feel, yeah, I definitely feel an automatic tightness and bondedness whenever I'm around other flatties. It's just such an unspoken, amazing connection. Um, I think that is so important and healing always, no matter where you are in the journey. It's always so reinforcing, but I wish we all lived closer. I think, you know, living out in Arizona, things are quite spread out. So, you know, getting together is, you know, It's a challenge and doesn't happen as often as I would like by any means, but yeah, the times we do meet up, it's always a beautiful, experience. Yeah. It's like hard to put words to.

K:

There's one other part of your story that I wanted to touch on today. Um, there's so many things we could touch on, but one part of your story that I really relate to is, the decision not to do chemo. Um, for me, I wasn't really pushed to do it. Nobody even asked me to do it. But, the result of that is feeling a little bit different within the breast cancer community at large as flatties we feel different because we don't have the implants, but as somebody who didn't do chemo or radiation, you can also feel like a little bit of an imposter syndrome. And you've spoken to that before. Would you be willing to talk a little bit about what that experience has been like for you?

A:

Sure. And I think it, I always am really careful and I haven't had this conversation much because I don't want to ever convey that my choices. are something that should be, you know, across the board for everybody, or that I'm against, you know, current, you know, advanced medical treatments or, you know, protocols because there's so much benefit to them often. But when I chose to not do the chemotherapy, I really, when you're, when you're going through all that stuff and there's so much being thrown at you, you know, one of the things often I was like, then there's this cancer group and you should go here and you should do this. And I remember going to a couple of those meetings initially when I was going through the surgeries and things. And I, I didn't feel like I could fit in because my story wasn't something I could tell or talk about or that anybody could relate to. And I, and I do, remember someone actually telling me like, you know, “you're gonna die” because I didn't choose chemotherapy,

K:

Oh wow.

A:

That was really scary to me because I didn't have anybody else to say, “but look at them, they lived, right? And they chose this too.” So it was really isolating and really a challenge to really stick to what feels true to you. And I think that's where, you know, community and support is so important because, you know, it is so important to be embraced and to feel okay about your choices too. So yeah, it was really, really challenging and it still is honestly all these years later.

Yeah. I know very few people that have, you know, chosen to not do chemotherapy and maybe there's more and they're just not willing to talk about it either and I can completely understand why because I think often, you know, there's a thing with that like that somehow that I'm trying to get a message across that it's not safe to do chemotherapy or it's the wrong thing to do and that is not my message on any level, but it is also a choice to not do chemotherapy. You know, and yeah, it would be great if there was more support surrounding that.

Yeah.

K:

It's very polarizing. You know, we hear about Elle McPherson in the news right now and how she's trying to be transparent about her process and getting a lot of abuse for it. There's so much fear around cancer and legitimately. I mean, I just lost my mom very suddenly from metastatic breast cancer, so can't be light about it. But it is true that more and more and my podcast is definitely showing this: These days, a lot of doctors are not jumping right into chemo for every patient. There are certain patients that don't get chemo these days where maybe back in the time of your diagnosis, it was more normative for every single patient to get chemo.

Certainly with lobular breast cancer, we're seeing more and more data showing that chemo is not as effective. And that's scary because you have less tools in your arsenal. We don't want that. But at the same time, I think there needs to be a space and an acceptance for those who both chose not to do chemo and who were not even asked to do chemo. And a place for us to say that we still have other experiences that are similar to the breast cancer community in terms of fear of recurrence. I mean, that's the thing that we all share that is probably the most intense and the most fear producing, um, that is something that unites all of us, regardless of what our bodies look like or whether we went through a certain treatment that most women go through when they have breast cancer.

So I just want to reiterate that. I'll probably talk more about that in my next episode, reflecting on our conversation here as well, but I just want to affirm you as a legitimate member of our community in recovery from breast cancer even though you didn't do chemo and that probably was more isolating and scary for you not to do chemo than it is for those of us who are not even asked to do it. So I honor your choice. I understand. It's really interesting that you associate the allergies and the sensitivities that your body had at the time of your diagnosis—now, I think I'm hearing that you're associating it with your implants that you had prior to being diagnosed, which is really interesting because we think of breast implant illness as an autoimmune disorder, and it sounds like you're, you're identifying now that you probably had some autoimmune problems that were arising because of your first set of implants, um, and I'm seeing you nodding, so that is, that is true then.

A:

Yeah. Absolutely. Yeah. I think definitely contributed hugely, if not fully, to that.

K:

And your perspective is so different now, looking back and being educated by the Internet. I mean, we just have so many more pieces of information and stories at our fingertips as patients now than we ever had before. So, of course, we never heard of breast implant illness before. And, of course, now that is so much more accessible, and we're so grateful for that as a community.

Thank you, Anna, for telling your story here. I want to hear all of your handles at all of the social places. Cause I want flatties and people who are considering going flat to know about you and see you in your beauty and your closet there on Instagram, Facebook, and YouTube. So share where we can find you there.

A:

Thank you so much for having me too. Yes. You can find me if you happen to be part of the FLAT community or you're looking for a FLAT community on Facebook, you can find the FLAT groups there. I'm certainly active in those groups where you can see me post there. I post, I post more frequently now on Instagram. I try to do it daily and that is at “closet lady, flat fashions.” And then the same thing on YouTube, I have a YouTube channel, “closet lady fat fashions” And I am kind of undergoing some transition there, but I am still posting there, but I'll, I'll get more regular again there.
I'm trying to figure out how I want that to look my channel. So yeah.

Some of the flat communities that I like to participate in: there's a community called Flat Out Love. There is Thrivers Who Thrift. There's Fierce Flap Forward. Um, and there, there are others.

And, you know, from the, some in the very beginning stages, just all of them the journey and others, you know, kind of early on in it and others longer down the path like myself and in between. Yeah,

K:

Yeah, I want to echo that. That fierce clap forward was a super crucial place for me in the early part of my journey, just finding what a Goldilocks mastectomy could look like and how to expect that to turn out and what to ask for. So everyone goes there when they're really new to the community and new to the idea of flatness, looking for information.

A:

I am. Yeah, working to kind of understand social media more and do more and more. But yeah, am working towards that. Yeah, it's exciting and Yeah. I hope to be able to inspire people to just really embrace who they are and love their bodies, which is always a challenge for all of us, whether we have breasts or not. But I really want that for everybody. all deserve to love ourselves like that for sure.

K:

Thank you, Anna. And does, uh, Arizona flatties have a presence on Facebook or where do people look for Arizona flatty?

A:

Yeah, if you're from Arizona or anywhere in Arizona, you can easily look up Arizona flatties and, you know, request to become a member there. There's always a few questions when you enter these groups to ensure privacy and to make sure that you meet the criteria to be someone that can be in the group and safely and protect everybody's privacy as well. And then, I think it, I'm not sure if other groups to it, but I know flat out love does it. There's kind of something called like a flatty map and you're able to kind of put in a zip code. I think you don't have to put your full address, just a zip code and it kind of will bring up this amazing map that kind of shows you all over the United States and even further out.

I think maybe some of them now where you can kind of locate, cause we have members that are from across the world too, like where you can locate other flatties so that you can kind of connect, you know, if you feel like it or whenever you're ready, you know that there's others you can meet up with, you know, and kind of.

K:

Yeah, I love that. That just happened this year. I think it just blossomed all over. Like, um, Stand Tall. AFC has a flatty map as well, where we can learn where the local flat groups are. So I'll talk more about that in my next episode for sure.

Yeah. Yeah.

All right. Well, thanks so much for spending an hour chatting with me today about your story.

Thank you so much for having me, Kathleen.

This is a solo episode where I'm reflecting on my week at Burning Man--a place I wouldn't normally be drawn to except that it offers an exceptional way to be with loss and say goodbye. I would have never ended up at Burning Man this year if it weren't for the podcast project--the opportunity came up during the debrief of my podcast interview with my writing partner, Avena, whose son is connected to the burning man organizers and had let her know that this was the year to go. My youtube video shows a lot of the photos I took there of my mom's tribute in the temple, my shibari piece, my wacky and wild outfits and lots of other photos of the temple. It can be found on either my estrogendiaries youtube account, or the podcast youtube account under the same name as the podcast. Thanks for listening to my adventures here!

Thanks for leaving a review and rating!

Here's this same podcast with photos from Burning Man shown on YouTube: https://youtu.be/a6Oq4OxQYPs

Find out more about Burning Man here: https://burningman.org/ 

This is a very short recap of stirred thoughts and feelings after talking to Miriam last week about her amazing self advocacy as a young breast cancer survivor with complicated hormonal needs. 

Catch this podcast on YouTube here: https://youtu.be/VDPM9RH5KJo 

Support my work by making a donation here: 

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The Facebook group for Flatties that I mentioned is here: https://www.facebook.com/groups/1445398828930324

Transcript:

Welcome back. Today, I'm just going to be recapping some of the topics that came up in the last interview, last week's podcast episode with my friend, Miriam Janove. Miriam is a young breast cancer survivor, just three and a half years out from her diagnosis. And she had a lot to say about a lot of subjects that are common for young survivors.

The first one that came up was the idea of over diagnosis and over treatment for young survivors. As she had stated, she got a second opinion, not because of the concern over whether she was being over treated, but because she needed a surgeon that really knew how to do her surgery, but she ended up with a new oncology team who ended up treating her very differently than what her first oncology team told her they would. And that was because of her age. She was in her 30s. And it was pretty clear that her first oncology team had a bias that said that young survivors need chemo regardless of whether they have an oncotype test that says that they are low risk or high risk.

Her second team of oncology professionals had a very different take and they really relied on her oncotyping to determine whether she would have chemo. And like so many of my guests, unexpectedly, she did not have chemo. It's so funny to me that I keep having guests that I assume have had chemo because you always assume folks in the breast cancer community, if you know them from this place--you assume it's pretty likely that they've had chemo, but it turns out that only, I think one of my guests so far has ended up having chemo.

Some of them turned down chemo and others were told they didn't have to have chemo. So Miriam was one that was told very clearly that she was not even being asked to take chemo. So pretty rare, I think classically for young survivors, but more and more we are seeing people who are, Healthcare professionals relying on the oncotyping test to see whether or not they really need it.

And so she was not overtreated. She was not given chemo when she didn't need it. Of course, we don't know. She's only three and a half years out. As she said, she's still, you know, somewhat at risk as we all are for recurrence or metastasis, regardless. But really nice that she didn't have to go through that particular hellish part of the breast cancer experience.

Thank you. The other part of her young survivor story that came out was her desire to be around, um, multi generational people. So she wanted to be back with her parents. She wanted to be around younger children. Kind of a revisiting of her values and really placing family and friends and children, the children of her friends, over her career as a big priority. So that was a theme that I think is really very common among young survivors. We, a lot of us, think differently after breast cancer about what our ambitions really are serving and where our ambitions really lie. And I think Miriam's a really good example of that.

A big part of Miriam's story that we didn't talk about because we didn't have time is her history of gynecological problems of hormone imbalance and dysfunction around her menstrual cycles. And she did refer to the fact that she had lost her ovaries. And I wanted to clarify because I think people probably wondered after hearing the last interview that she Miriam was not asked to give up her ovaries because of being treated for breast cancer specifically.

She was asked to give up her hormone treatment, which she had had, pretty much her whole adult life because of menstrual dysfunction and hormone imbalance. And so she was on estrogen and progesterone, or otherwise known as birth control, not for the sake of birth control, but for the sake of managing her very difficult menstrual symptoms and after breast cancer, folks who are dependent on hormone treatment, hormone therapy for those kinds of symptoms have no choice but to give up their ovaries if those symptoms are extreme as hers were. And so she was not put on ovarian suppression. She was not offered ovarian suppression drugs and she did need to give up her ovaries. Regardless, because she was so dependent on hormone therapy. And so, I think just to reassure those listeners who are very concerned that they might have symptoms as extreme as Miriam's, which were, you know, extreme energy loss, extreme brain fog, and some pain, um, some bodily pain also.

While those are common side effects of estrogen deprivation and endocrine therapy that comes for many of us after breast cancer in the form of tamoxifen or aromatase inhibitors. Her symptoms were actually more extreme because she also lost her ovaries. And at that young age, it's very difficult to lose your ovaries and to lose that supply of hormones that we're used to having at that stage in our lives.

So I want to reassure people that even though tamoxifen can have extreme effects and really alter our lives and our lifestyles, it is not quite that extreme for most of us. And I think that personally, I think that Miriam's ovary loss had something to do with that as well. I'm sure she would agree with me if she were here to comment.

Really interesting set of characteristics. I wanted to talk a little bit about the fact that she had to search for a different surgeon. Again, it's just so common to hear stories of these kind of contrasting first and second opinions, whether it be for surgical procedure or for breast cancer treatment. In Miriam's case, it was both. She was looking for someone with experience with flat closure, and she didn't find that on her first go round, and she had to look elsewhere, and thankfully she found it in her second try, the second healthcare system that she tried in her city. I happen to have also gotten my second mastectomy in Seattle, in her city, and I was at a third healthcare system at that time.

So if you're in Seattle, two out of three healthcare systems that I know of are really good at flat closure. But I think, especially in smaller cities or towns, it is really hard to find a surgeon that does it well. And then if, like me, you're looking for a Goldilocks procedure, it's even harder to find surgeons with experience in that area.

So, really good to hear Miriam talk about how she was reassured that she didn't need to be in a rush and that she could afford to take that time and look for the right practitioners. I love that part of her story. I think it's so important to tell because so many of us feel rushed. Even when we are reassured that we have time, we want to act as soon as possible. We don't want to wait. I personally would never have gone up to Seattle to seek a surgeon or even looked on Facebook for pictures of surgeries of Goldilocks if I hadn't found out that my first choice of surgeons had broken her foot and she was putting me off a couple of months for my surgery only because I was afforded those couple of months to look around, did I get choosy. And I just really want to reiterate what Miriam said is you have time to get choosy unless you have an aggressive. are fast growing cancer. Those are the terms that your doctor will probably use to refer to it if it is, you know, the kind of cancer you need to act on quickly. That type of cancer is pretty rare in breast cancer.

So most of us do have time to look around and get a second opinion. And as Miriam mentioned, she got her education in terms of what to do practically on Facebook. And so many of us do. There's a huge, um, uh, vis, visual kind of support system on Instagram as well in terms of like looking at each other's bodies and each other's outcomes. I've loved connecting with people on Instagram even more than Facebook because Facebook can be so dicey, but Facebook is really the place to go. If you're looking for quick answers in a forum full of women that have been through what you're looking at going through. And both Miriam and I found those answers.

Thankfully, I found a photograph of a woman who lived up in Seattle who had an outcome that I realized I was capable of having, that I could actually still have a small breast after a mastectomy without having an implant. And that's how I learned about Goldilocks, and that's how I found my surgeon for my second surgery/mastectomy. So, really important to know about these Facebook groups. I know that Miriam is on a number of the ones I'm on for flat closure. The main one is Fierce Flat Forward. That's where I found that photograph and there are so many Facebook groups for so many different issues and topics around breast cancer and breast health.

So if you don't know about those and you're kind of in an urgent situation where you really need to find the resources, just pose a question there. You can even do so anonymously if you'd like to. So that's, there's that option now, and the groups tend to be private, and they have some screening that restricts outsiders, people outside the breast cancer community from getting in.

So it's a pretty safe community. Now, if you want to state your opinion about going out in public without your shirt on, you're going to get some pushback in that community, because there's a lot of debate about whether that's respectful and appropriate socially. And, uh, and you might notice that the cover art for last week's episode was indeed me and Miriam with our shirts off.

So, uh, the flat community is kind of famous for, for doing that in the context of a breast cancer walk and breast cancer awareness events. And that's, those are the times that Miriam and I, and those are the times that Miriam and I have done that. Just in that context of other breast cancer survivors. So, uh, we have, we have fun doing that.

We're both kind of uniboobers. And so we both have, um, tend to use a one sided bra in those contexts. And actually she and I are planning to meet up at a breast cancer walk this weekend. The first one of the season here in the Northwest. She and I are both going to be tabling at, um, events in Seattle this year.

We'll for Stantol AFC. We're starting to have tabling this year for the first time. So she'll be one of the other tablers in the two big walks in Seattle. So you can look for her there if you live in Seattle. And I just wanted to wrap it up real quick and leave it at that for this week. I am between vacations right now.

I have a very luxurious August. I, I had a wonderful restful vacation at the coast last week. I'm doing a quilting retreat this week and next week I'm going to be at Burning Man. So. I am putting out the podcast on Wednesdays this month because they're a little bit delayed and that just gives me a few days to catch up.

But um, I expect that my next episode will not be a guest interview as is the pattern, but rather will be a conversation about my experience with radical self expression in Burning Man. Uh, Burning Man has a tradition of um, celebrating impermanence. And the things that are changeful in life, including loss and death.

And I, I have a need because my mom died of metastatic breast cancer a few months ago. I have a need to grieve her and pay more attention to my own grief. And I'm planning to do that there. But I'm also planning to be around other women who have lost their breasts and who have learned how to ritualize that experience and grieve that experience.

Um, so I'm really, really looking forward to meeting other women, especially who are in the same position as I am, having lost my mom, having lost my breasts, having breast cancer as my main adversary this year and last year, um, and just doing some appropriate grieving because I think our, our culture just doesn't allow us to grieve appropriately.

And I think probably my Instagram account will be the first place you'll be able to see me at Burning Man. I'll be taking pictures of myself and having others take pictures of me. Mostly, I won't be taking pictures of others very often because they have a policy against that, that I really support and believe in.

So, it'll mostly be pictures of me at Burning Man. But I hope to take a lot of them and share them on Instagram. And probably one will be the cover art of my next episode here, which will be out a couple of Wednesdays from now. Um, and I will talk to you then take care.

My dear friend Miriam has a lot to say in this interview about work and breast cancer. She also makes a really good argument for getting a second opinion. 

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There are some terms to define from the last episode, but mainly I want to talk more about the idea of self blame and "I must have done something wrong" raised by Avena last week. This is a topic worth discussion. 

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Transcript:

Today I'm doing another diary entry that's reflecting on my last interview. My last interview was with Avena Ward, my friend and writing partner, who had her first mastectomy 30 years ago. So she had some really old terms that I'm going to talk about today. The theme of the interview was following your intuition and self affirmation rather than self blame.

But we also talked about some older kinds of procedures that I just want to talk about that are not really in use anymore, but you might hear about from friends that have had mastectomies in the past, and you might wonder about them because of that. So thought I would just define some terms as I usually do on the week after I have an interview, and then also talk about some of the general themes that came up. Avena just had so much great insight and wisdom and her sense of intuition is so spectacular. I just wanted to talk and reflect a little bit on that as well.

So the first term that came up in the interview last Sunday with Avena was the term “radical mastectomy” and you don't hear about this happening anymore—it doesn't really happen anymore. I don't think I've ever heard of anyone in the last 10 or 20 years that's had one. What this means is they used to take not only your entire amount of breast tissue out, but also every single underarm lymph node. There are lymph nodes all over our body, so obviously I'm not taking every single lymph node, but the ones that are located under your arm, which is a very invasive surgery that ends up having a lot of symptoms and that's why they no longer do this procedure. But also part of your pectoral muscle or chest wall muscle is taken in a radical mastectomy. These days that still can happen. You still can have some scraping or removal of the pectoral muscle.

I did myself because my DCIS had grown into the outer layers of my pectoral muscle. So that's not unusual. But that is not a radical mastectomy in itself. It has to include all three things, all the breast tissue, all the lymph nodes under the arm and the part of the pectoral muscle that is located under the breast. It's only a little less than half of the pectoral muscle that is located under the breast, but that is also removed in every instance with a radical mastectomy. And for that reason, yeah, we, we just don't see that being done anymore. Mostly because lymph node removal is very costly. in terms of quality of life and, uh, side effects of surgery, which in most cases is lymphadema.

More, and more, and more, you see the science pointing towards less lymph node removal, really lessening that as much as possible. I was in San Antonio for the big breast cancer conference, research conference, this last December, and that was actually the biggest takeaway that most of us got, I think, was really lymph node removal is not going to benefit us if we can replace it with radiation. Because radiation does not result in as many long term side effects or quality of life issues like lymphadema. And with most surgeons techniques these days, the removal of lymph nodes more than one or two really does. It is very likely that folks will get long term lymphadema, and lymphadema is a really big hassle. You have to wear a sleeve in the summer when it's hot, your arm is always Um, I have a lot of friends with lymphadema and it doesn't go away. It's not something you can address with drugs or therapy. And so folks are in the medical community and research community are listening to patients when they say “it has not been worth it for me. I would have rather had more radiation.” And so that's what's happening now. We're changing still in this trend toward moving away from lymph node removal. Again, I'm not an expert. I'm just an advocate. I'm a well informed advocate, but your doctor is the expert. So do not take my advice here as medical advice.

I am only trained in nutrition in terms of medical advice. So, go back to your doctor with this information and seek out their expertise on this if you can. And if you have questions, cause I'm not the one to ask, but it is really interesting to me that we're moving away from those more invasive types of mastectomy procedures. So, we do have something called a modified radical mastectomy these days, and that is taking less lymph nodes, but my guess is that even a modified radical mastectomy is on its way out based on what I saw in San Antonio this last December.

The next concept that came up in my interview with Avena is a favorite of mine.

She is a survivor of lobular cancer and lobular breast cancer is something that most women don't know about, even if they were diagnosed with it. Sometimes doctors don't tell them that they're diagnosed with it, number one, and most doctors don't fully understand it themselves because it has been drastically understudied and very, very seldomly separated from the other type of breast cancer that is more common, which is Ductal. And the two names of Ductal and Lobular are even being revisited these days in the scientific community. And that's kind of hot off the press. Only the people that are on the inside of Lobular Research really know that, so you're not going to hear your doctor affirming that probably, but because I am an active volunteer with the Lobular Breast Cancer Alliance, and I go to staff meetings, and I hear the latest news, that is something that has just come up in the last couple of months that Lobular was called Lobular because we used to think that it was located, the cancer was located in the lobules or that it started in the lobules, and ductal was called ductal because you thought it started in the ducts, but you can have Lobular breast cancer in the ducts and you can have ductal breast cancer in the lobules.

So those are misnomers. They are mislabeled names that really probably should be replaced with a little bit more accurate names. The thing that makes lobular cancer itself and distinct from ductal is that it grows invisibly in a spiderweb like formation and not a lump or a tumor. So it is very hard to detect. And that's why I was shocked when Avena said that they actually detected it in her biopsy with Dr. Thurman. And I'm all the more impressed with Dr. Thurman's techniques because of that, because generally, you don't get, much of lobular in a biopsy unless it's really extensive, and Avena's wasn't very extensive.

So, kind of surprising that they did catch it in the biopsy. I will talk a lot more about lobular breast cancer in the future because it deserves a couple hours of dedication and this is just a light summary of terms, but suffice it to say, there is a characteristic called E-cadherin. It is a genetic characteristic, not always an inherited generic characteristic, so not always something that we get from our mother or father or grandparents. Sometimes it's a mutation that happens. during our lifetime, just in us, and it is called E-cadherin. E-cadherin is the glue that sticks cancer cells together and makes them into a lump or a tumor, which turns out is a real blessing because we wouldn't detect cancer if it didn't stick together with that E-cadherin component and form a tumor, um, as often. So, lobular breast cancer is not detected as often as is the case in my own story. I did not know that I had lobular breast cancer until it was already out of my breast. And many, many women find that to be the case. A lot of times you're going in after ductal or DCIS. And as kind of a, a side effect of surgery, you see that you also have invasive lobular breast cancer in there, and it was invisible to all the scans.

I had a PET scan, I had many MRIs, I had many ultrasounds and many mammograms, none of them picked up my lobular breast cancer. Albeit, it was a very small amount of lobular, I should say. If it gets quite large, then the scans will tend to pick it up, especially on an MRI. But there is new technology, a new PET technology in particular that will show a lobular growth—it's not a tumor, but a lobular lesion—will show up, um, on these new PET scans really well. So there is a new technology that we've seen getting developed and being tested and used in the scientific community. And it is just starting to be used in the clinical community now. So that's pretty exciting.

I'll talk a lot more about lobular as we have more guests on that have that diagnosis. And I'll probably take a whole episode at some point just to talk about what we've learned. Because we have a lot that we're learning about lobular now that there is research that's dedicated just to it and not to the greater breast cancer community.

I will say though that there is an event this year that you should know about if you have lobular or if you've had lobular or if you're interested in lobular, this year will be the first year that we will have an international lobular awareness day or lobular breast cancer awareness day. It's going to be on October 15th. And different states in the U. S. are in the process of approving it as a National Awareness Day. And we're going to have events all over the U. S. Here in Portland, Oregon, there's one at Providence Cancer Center in Northeast Portland, there's going to be an event at Sloan Kettering and MD Anderson and a number of other places there's, they're going to ring the bell at the Stock Exchange in Toronto that morning and proclaim it International Lobular Breast Cancer Awareness Day. So if you're interested in events, be sure and reach out to me and I'll let you know where the closest place near you to gather, get together either virtually or in person would be. And you can reach out to me at my email address, which is Kathleen Moss @protonmail. com.

But moving on past the Lobular, I want to talk about the procedure that Avena had that is also a little bit less known these days or heard of these days, which is the TRAM flap procedure. Tram flap was one of the first kind of flap procedures that we saw used in plastic surgery setting to reform a breast or a breast like mound without using an interior prosthetic or implant.

It is using, like Avena said very well, is using both skin and muscle, and it is an outdated procedure at this point. You don't hear people offer it to patients anymore, and that's because the simple fact that it, It tended to show a lot of hernias because the muscle was misplaced or displaced and realigned, um, up north of the abdomen. A lot of folks had hernias down where that muscle was supposed to be holding things in. And so we have something called DIEP flap or DI-EP flap as they say in the UK and Australia which is, uh, a really good replacement for TRAM Flap. It is not involving that abdominal muscle. It is just using skin and fat from the abdomen instead.

So it's a similar procedure in that it uses skin and fat from the abdomen. It just doesn't use the muscle. And, uh, the words that are being stood for in the term DIEP Flap are deep as in D E E P, inferior epigastric perforator flap, which is just a way of saying the flap is, is kind of named for the abdominal blood vessel in that area.

So it's just named after the blood vessel that travels through that area. And we will have guests on that have had a DIEP flap. I will say that my impression is at this point, and I'm not very experienced in this area, but my impression from talking to friends that have had a DIEP flap is that it is just as involved as a TRAM flap—it is many hours long, um, and maybe a day or two recovery in the hospital afterwards. So it is not a light procedure by any means. It's not as easy as having an implant. or going flat. So that is kind of a light definition of TRAM versus DIEP. You'll hear the DIEP term these days where you would have heard the TRAM flap before DIEP came along.

Another term that Avena talked about was myofacial massage, and I think Avena did this term justice and talked about It's just a light form of massage that you can learn to do on yourself or you can go to a professional to do it on you. This is something like many other things in the breast cancer therapy world. It's kind of an elite offering. So if you go into the average breast cancer clinic and you say, I want myofascial massage, it's kind of like saying I want a nutritionist to help me with my breast cancer recovery and resistance to recurrence. They'll look at you like, “um, sorry, we don't offer that. That's a little beyond what we do here. We're just keeping people alive.” And really, I think the alternative/integrative community of medical professionals does this kind of work a lot better. Because after all, the conventional medical system is really just there to keep people alive. That's what they do best. And that's what they're doing when they do your mastectomy refer you to get your special bras or prosthetics afterwards. They're doing the bare minimum to keep you alive. You really have to go to the kind of alternative, or integrative, which is the term that I prefer to use or the community that I prefer to associate with myself to get these special, really deeply healing therapies like myofascial massage.

And most of us need those. Most of us need more than. You know, a wig for when we have chemo and the cold caps and things like that to reduce the, the nerve inflammation, most of us need recovery help and we don't get it. And I just want to acknowledge that's kind of an elite thing. That you have to have a lot of money or really good health insurance in order to be offered. And you kind of need to know how to seek it out too. So you might need to call around. I found out about my excellent massage and physical therapist by going to my local breast cancer support group. And that's kind of one of the best things I learned from that support group. So you'll learn from other patients and these days that's happening a lot on Facebook groups based on the kind of breast cancer that you had, whether it's lobular, ductal, or whether you went flat or had implants, you'll, you'll probably find a Facebook group that is matching the description of your experience and no matter what that is based on, you will find really good advice there, especially if it's a local group on where to go for things like myofascial massage and nutrition and acupuncture and physical therapy, even a lot of patients don't even know that they're eligible for physical therapy after mastectomy and that they might need it to keep their tissue loose and not get all bound up with scar tissue, but it's really essential. In my opinion, it's one of the most essential things. So, myofascial massage is another thing that is, I guess, kind of a luxury, but also semi essential just in terms of not having pain and not having irritation on into the later years after a mastectomy.

Now, getting into some of the more esoteric topics of discussion in Avina's interview, I just love that she touched on the concept of: “What did I do wrong” and the solution to that, having a community of other loving women around you to affirm, “I did nothing wrong.” That is one of the most powerful things that we can talk about in the breast cancer community.

During breast cancer recovery is how much do you blame yourself? What do you think you did wrong? We all think we did something wrong. I mean, it's just natural, right? You kind of have to admit that before you can move on. But having other women around you that love themselves and either have forgiven themselves for what they think they did wrong, Or have talked themselves out of the fact that they did anything wrong, based on their beliefs.

That is the most healing thing psychologically that I've encountered myself. And I love that Avena brought it up in this way, that the first time she had a mastectomy, she was alone. She had no one to tell her, you did nothing wrong. She had no one to witness, you did nothing wrong. She went away with the impression, “I must have done something wrong. After all, I was in La Leche. I learned that if you breastfeed, you are safe from having breast cancer. It must have been something I did wrong because I did that right and that was a pretty major thing.” She was alone with those thoughts. And she points out that not being alone is a key way to get over those thoughts.

And I just have to repeat that over and over, shout it from the mountaintops. Do not be alone in this journey of recovery. Find others who have gotten past that self blame stage. And I see this all the time being a nutritionist. People are either clinging to me for what they can do right from now on, because they believe that what they ate was what they did wrong, or they run from me because I'm such a trigger, reminding them of what they did wrong, which was put a certain kind of food in their mouth, which in my opinion is totally false. You don't get cancer from putting a certain food in your mouth and you don't grow cancer from putting a certain food in your mouth. It's much bigger than that. Now it can play a role. It can have some influence in your momentum toward health to have a healthy diet for sure. And there are toxins, there are carcinogens in our foods. But that is not the only factor and it's not the main factor as far as science knows right now. And science is pretty advanced right now. So if you feel like it was you eating certain things that caused your cancer to grow or caused it in the first place, please be around other women that don't believe that belief.

Find other women that maybe have thought that in the past and have come away from that belief. Or make an appointment with me because I can tell you with scientific research, with solid, solid research, that that is just not true. Now, stress is a huge factor. That's a big one. Exercise is probably the most scientifically founded belief in terms of like if you were a couch potato for the 10 years or 20 years before you got cancer. You know, you might be able to forgive yourself for that because there is some research that that could move the needle. Chances are it's not anything that you did wrong. Cancer finds us total involuntary methods. It comes into our lives in ways that we cannot see or prevent in almost every case. And then the things that grow cancer are multifaceted.

So many different things, so many different viral infections that can get involved in autoimmunity that you might not know that you have and might not be able to know that you have. Heavy metal poisoning, you know, the list is endless. Nutrition and exercise and sleep, stress reduction, those are all part of it, but they all go together. There's not one that stands out as the single factor. And we're all doing the best we can, right? Like, we know about stress, and we know how to reduce it. We're all doing the best we can to reduce it. And we learn new techniques. And that's all you can do. So forgiving yourself for what you have done that was a little lazy, maybe, but also being around other women who are perfectly imperfect, just like you, who still love themselves and have forgiven themselves for whatever little bits of things they could have controlled. It's huge, huge. I can't say it enough.

And then at the end of my conversation with Avena, we talked about the difference between a private clinic and a hospital imaging center and the kind of treatment that you get there both physically and just in terms of the quality of the machines, maybe, and spiritually in terms of how much the staff is overworked and underpaid and distracted, burned out, really, I mean, it's very, very likely that most of our hospital staff these days, especially after COVID is a little burned out and even Dr. Thurman in that private clinic that she and I go to is probably somewhat burned out, but because she's able to manage her hours and the number of minutes she spends with each patient herself, it is a huge difference walking into a private clinic that is much more expensive, usually out of network.

Usually I don't go to Dr. Thurman's clinic unless I've already met my out of pocket max for the year because it's so expensive I can't even pay the copay. It is an elite opportunity, no doubt about it—and yet... We'll talk more about this in the future—and yet, isn't it worth it? Isn't my survival worth it? Isn't Avena's catching her cancer worth it? Absolutely. It is worth way more money than we are usually prepared to pay. To get that kind of outcome that Avena got, she went into her regular hospital system back in Chicago. They found nothing. A couple months later, she came in to a private clinic, and I don't know, I don't know, maybe it is just the machinery that they ordered that was more up to date, or maybe it was the skill of the practitioners there, but for whatever reason, they found it. And that made such a huge difference in Avena's survival, and it is worth paying a little extra for, I think, especially if you have that extra. Not to mention the spiritual aspect, like Avena was focusing on, are they caring? Do they have the capacity to care for me while they're caring for my body? It's a question we should be asking. And spending a little more time getting to the bottom of with each of our practitioners and voting with our feet, you know, like: “if they can't care for me. I'm out the door. I'm sorry. I'm not going to support and live the rest of my life knowing I'm supporting someone continuing in their career, treating patients like this.”

And we'll talk more about that in my next interview with my friend Miriam. She has something to say about that too. Most of us aren't in such a big hurry with breast cancer that we can't get a second opinion and Avena really Illustrated that well with her story. So those are the things that I wanted to recap for this episode.

I also want to tell you that after my interview with Avena, we chatted for about a half hour after I turned off the recorder and she told me that she was hoping to go to Burning Man this year. And I said, Oh, I'd love to go to Burning Man someday. I think that would be a really healing experience for me. And she said, “well, do you want to go with me?” And I said, “how are you getting tickets? It's just a couple months away, right?” I think it was less than two months away at that point. It was like a month and a half away. And she said, “well, my, my son says that there's still tickets and he's really connected in the leadership and seems to be plenty of tickets this year. So if you want to go, we can take my van.” So in a couple of weeks, Avena and I are leaving for Burning Man. And, uh, I think. If you check out my Instagram at @a.breast.cancer.diary with little dots in between the words, you'll see some of the highlights of what happens there. Probably not until the first week of September, cause I won't have any wifi out in the desert, but I think that's going to be a really amazing experience for me and my body.

Just have that much more, um, self expression and self affirmation and community affirmation. It's going to be mostly community of strangers, which is weird. I don't have a lot of friends going and I have just a couple of acquaintances going, but, um, I'm already really, really excited and feeling good about my camp.

I'm connecting with them every day on WhatsApp and planning for all the things. So I think it's going to be a really, really amazing experience and I'll definitely do an episode that's just dedicated to my Burning Man experience. So stay tuned for that sometime. September, October, somewhere in there.

This fall will be a little bit less of a, um, kind of structured routine with the podcast. I think I'll get into some breast cancer walks and interviews that are live out in the community. A little bit less quiet audio and some kind of noisy settings, maybe. So we'll see how that goes, but I'm excited to shake it up a little bit this fall and because I am going on vacation this next week and also going to Burning Man this month after that, I may have a little bit of a delay in early September where I don't have an episode for one Sunday.

May be two Sundays. So if that happens, I will let you know for sure in advance. But that's why I'm having kind of an unexpected vacation at Burning Man. So wish me luck and Avena. Luck will become the best of friends while we're there, even though we hadn't met in person. We still haven't met in person.

Actually, we're meeting in person for the first time tomorrow. So that'll be really fun. But my next interview is with my friend Miriam up in Seattle, and she has a delightful story. She is a uniboober, a single breasted woman. And her story is mostly around, uh, getting a second opinion, following her intuition and navigating some really crazy assumptions about young breast cancer patients.

So stay tuned for that next Sunday and I'll talk to you then.

My friend Avena had never told me her breast cancer story before this interview, so I'm hearing it fresh right along with you, and of course, her insights blew me away.

Transcript:

K:

Today's guest is my friend, Avena Ward. She has been in my life just a short time, and she's been a writing partner to me, mostly online. We met each other through a local writers group called Willamette Writers here in Northwest Oregon. Avena lives in Portland, and she is a two time breast cancer survivor with a long history of dealing with thoughts about breast cancer and recovery from breast cancer. She had a long space in between her two diagnoses. Her second breast cancer occurrence was a second primary breast cancer occurrence in the contra-lateral breast. she has an interesting story to tell, and I'm so glad to have her here with me today.

A:
Thank you, Kathleen, for inviting me. I'm, uh, I'm anxious to share my story with, uh, other, others who are approaching this for the first time.

K:
So one of the questions that I wanted to ask you about your story is, is there anything that surprised you early on, especially around your first diagnosis? You were 42 years old, this was a few decades ago, so quite a while back, but what surprised you most at that time when you learned about your diagnosis?

A:
I think the fact that I had cancer at all surprised me the most. At 42, um, I had been debating whether to have a, a first mammogram, but I had breastfed both of my children for extended periods of time, uh, my daughter for two years and my son for 14 months. I had been a card carrying La Leche League member and we talked a lot about how breastfeeding confers some resistance to breast cancer. So I just was shocked when one day in the shower, I put my hand on my breast and felt a lump. Uh, and so it took me a very long time to even bring that to the attention of a doctor.

K:

How long?

A:

I think I found the lump in April and I didn't have imaging of it until July, and then I had a biopsy in August, so it was several months.

K:
How did you deal with the diagnosis itself?

A:

Again, just shock. And, um, my mother had recently died of lung cancer, not breast cancer, but nine months before my surgery, mom had passed away. And I had experienced a period of, a long period of deep grief after losing her at the age of 63. And so I was just coming out of the grief darkness when I found my lump. And, I found that my family didn't have a lot of capacity for handling the shock either.

K:
Hmm. Did you take your time deciding what to do and who to let guide you down this path or was it a quick process?

A:

I took my sweet time, yes, deciding what to do. And I guess it surprised me too, that I found in myself some really strong opinions about how I would proceed. And so part of that process was interviewing various surgeons. And at the time then the internet wasn't what it is now. You couldn't just go and type in breast cancer and get a whole bunch of information. But I went to the bookstore and I got Dr. Susan Love's breast book. And several other books on cancer, and read those, while I was interviewing these three surgeons.

And then, I think, I was surprised about how I felt that I wanted to be led to the solution in a sort of spiritual way, rather than necessarily by data. So, I took a sail out on Lake Michigan at the time with the last book, and when I closed the page, I allowed myself to be in meditation. And that's when the treatment path that I wanted to choose came to me. So actually, when I was visiting those surgeons, I already knew what I wanted to have happen.

K:

And, can you describe what that was?

A:

Yes, I had decided that even though my cancer was stage one, that I did not want to have chemo or radiation. And so, the solution was a mastectomy—a radical mastectomy, and when I went to the surgeons with that solution, no one argued with me. I was surprised—my family argued with me, but my, but my surgeon said, “no, I think that's a good idea.”

K:

Yes, and radical mastectomy is not something we see very much anymore. That includes all of the lymph nodes?

A:

Exactly.

K:
Do you think that taking all the lymph nodes is what made them feel most comfortable with not doing chemo?

A:
I think so. I think so. Yes. And of the three surgeons I interviewed, the third one was the oldest and had been doing breast mastectomies for the longest time. And he did the lymph node dissection as well, and said to me, “you will live to be an old grandma.” So I took his prophecy to heart!

K:
Was that here in the Portland area?

A:

All of this was in Chicago. He was a surgeon at Rush Pres St. Luke's Hospital.

K:
So talk a little bit more about the stress that you were under from losing your mom and how you feel that's connected with, if it is connected with your diagnosis and the progression of your cancer.

A:

Yeah. There is something about grief that’s like being a drowning person and being taken under, I felt like I had been taken under by the grief of losing my mom at such a, a pivotal time in my mothering and in her life. She was 63. My parents had just retired. She loved life and she loved her grand-kids and I was looking forward to my children knowing my mother. And so there was this huge betrayal. A betrayal. You know, life is not fair. And my kids were six and ten when my mom died. And since, since that time and in my career as a pastor, I've met several women whose breast cancer diagnosis came on the heels of the death of their mothers. So there is something pretty significant to losing that primary connection of nurturing and then having something occur with the organs of our body that nurture.

K:

Yeah. So tell me about the second occurrence. How much later was that and what did that look like?

A:
After my surgery the first time, within a year or two, I was able to kind of put that in the background and live life fully. Uh, I mentioned ministry—the occurrence of the first cancer really also evoked in me a desire to change careers. So I chose ministry and went to seminary after the first occurrence, and I had a wonderful career of 20 years plus in ministry. And then I had retired in 2017 and moved to be near my daughter who had moved from Chicago to Portland. So, we relocated, and my daughter was a midwife in Portland, and so when I was establishing my care with doctors and, uh, other practitioners in the area, I relied on her to refer me to people. Before I left Chicago, I had had some interesting symptoms in that remaining breast. I had had some discharge from my nipple—clear, fluid, no pain, no blood. My primary care back then had cultured it. She had had me have the mammogram, the ultrasound, and eventually the MRI, none of which was conclusive for anything.

So I arrived in Portland with this sort of lingering thing in the background, and my daughter, the midwife, said, mom, if I'm gonna refer you to anybody, I'm gonna send you to Amy Thurman. She's the most thorough imaging specialist in the Portland area.

K:

I know her too! That's, that's crazy because I was just thinking about her today.

A:

Yeah?

And so I went to Amy's office and had my first mammogram and I expected to just skip away and they said, “um, we think you ought to come back and have an ultrasound.” So I said, "well, it's almost Thanksgiving. I think I'll go and do Thanksgiving things and come back." And I came back and the ultrasound was, “hmm, I think you better have a biopsy.” And every time I'm thinking to myself, okay, I can deal with this. And Dr. Thurman is incredibly thorough. So when she was doing the biopsy of the one spot that they had seen, With the ultrasound she said, “oh, there's another spot there and there's another spot there, so I'm gonna biopsy all of those,” and sure enough, there was a field of stage 1-B--both ductal and lobular.

K:
Oh! So lobular showed up that early—in the biopsy?

A:

Yes. Yes,

K:
Wow. 

A:
Mm hmm. So, again I went into myself—I did consult with my Ob-GYN who said, “you know, we want you to get this taken care of and we'll give you as much support as you like.” And I said “I like to interview surgeons” and she said “fine, I'll give you the names of several” and so I was very supported by that.

Dr. Thurman called me, my Ob-GYN kept calling me just to make sure I was okay, but I was doing my discernment process and I chose, again, to have a mastectomy. This time just with the sentinel node biopsy. And I interviewed a couple of surgeons, brought my daughter along, and my husband along to the appointments. And I chose the one who cried with us.

Again, I think I let my heart lead. They both seemed like very competent surgeons. Lots of great experience. Wonderfully knowledgeable. But the one who cried with us is the one I went with.

K:
Beautiful. So I want to hear about the different procedures that you had—how did your body look after the first surgery, and then how does your body look now?

A:
The first surgery I went with I found, of course, the surgeon I wanted to work with. And he said to me, “Have you heard that you could have reconstruction?” And I said, “Of course I have, but I don't, I don't want anything foreign in my body.” And he said, “Oh, well, do you know about TRAM flap?”

I'm like, “What's that?” And he said, “Oh, I have a plastic surgeon I work with who does wonderful work with TRAM flap. I'll introduce you to him and he can tell you more about it.” In the meantime, I, I did my reading on it. TRAM is short for transabdominal, abdominus recti-something. The M, I don't remember.

And “FLAP” is that they take a piece of skin from your abdomen and graft it into the surgical site where they've removed the breast tissue. And so, it sounded perfect. They're using my body tissues. My abdominus recti which are the two long muscles that connect from your ribs down to your pubic bone.

They are detached and moved under the skin up to a point in your pectoralis muscle. And they become the blood supply for then fat and skin that are grafted from your abdomen. And they explained to me, because they were removing the abdominus recti, which kind of hold in your belly stuff, that they would put a piece of mesh across my abdomen at the same time, that this would be major surgery. It would be done at the time of the mastectomy and then it would be about six hours of surgery, but they felt at my age and physical condition that I was a good candidate for that. And it so happened, the day they were performing the surgery on me, the mastectomy team came in and did their work, but the people who were supposed to do all the TRAM flap work were, residents and they were called away to a serious accident. And so they left me on the operating table, open, while they took care of what they needed to take care of. And then came and operated on me later. So I was under anesthesia for 10 hours and no one informed my husband. And so he was a basket case. And having understood that I'd be under for maybe five or six hours, uh, he just did not know what was happening. And that also required a five day hospital stay back then, so that they could assess how the grafts were doing and make sure I didn't develop any infections. Pretty heavy duty, uh, surgery. Not, not something to wink at. I don't think I had gotten the full impact of what that would be. The recovery was very painful because of the amount of movement of things in my abdomen and then about six months after the graft was firmly in place, I went back for a procedure to try and create a little nipple on the grafted skin that formed the breast platform. And then they tattooed an areola on that.

It hasn't worked, that tattoo. It's faded on me twice. I've had it tattooed twice. It just fades. So, but I was very happy in spite of the long recovery from that—I was very happy with the result and lived a very comfortable life, comfortable in my body, able to wear bathing suits and I even developed the ability to do sit ups after they had taken my abdominus recti, for the 25 years that I lived with that.

The second time around, I had the assessment again, but well, I had heard perhaps they could take tissue from my gluteus, my butt area and rebuild. But as the doctors described it, there was way too much uncertainty about whether they would be able to harvest enough tissue to match the previous reconstruction. And as I listened, I said, “you know what? I can live with a flat chest and a prosthesis, thank you.” So that is how I live now. I have the reconstructed breast, and I have a chest wall, and a nice silicone prosthesis that works most of the year. It's pretty hot in the summer, but most of the year it's great.

K:
How are the scars on your body after the TRAM flap procedure? Where are they?

A:
Thank you. Thank you for asking. Of course, because they're harvesting a lot of stuff from the abdomen, I have a big smile on my lower abdomen—actually had to have my belly button re-rerouted. So they, they took the tissue from where my belly button originally attaches in the abdominus area and punched a new hole for the belly button to come out.

So there's the smile and the belly button. And then, on the breast itself, imagine an almond shape or an eye shaped incision with a graft of skin in there that came from my lower belly. Now, I had a lot of, uh, scarring from having babies on my lower belly. So now I have that tissue on my, on my breast.

So it isn't perfect. It is by no means perfect. I don't think anyone looking at me naked would think that it's, that it's a real breast. But it has functioned as such under clothes for a long time.

K:
Were you pretty happy with it after you had the TRAM?

A:
Absolutely.
Absolutely. Very happy with it.

K:
So the skin showing on the outside where they created the nipple, that is skin that was transplanted

A:
Yes. Yes. Um, after that surgery, about two, three months after the surgery, my doctor suggested, and I found a person who did myofacial massage. And they did a lot of work around the scar areas on the breast tissue, which was very helpful in getting back feeling. I actually can feel touch on the grafted skin. And she did a lot of work under my arm, where all the lymph nodes were removed as well. Because that can leave a lot of numbness, even painful, stretchy, stretchy fascia underneath there. So I would highly recommend to anyone to have some special massage after you have surgery cause I think it really helps restore feeling to the body.

K:
Was that a physical therapist?

A:
The person I saw was not a trained physical therapist. She was a myofacial massage specialist, but a physical therapist will do that. I know at Providence, where I had my surgery here, they have some people in their massage department, for cancer patients. I started to see someone after the second surgery, but then COVID locked everything down and I didn't have that opportunity.

K:

Do you have feeling in most of the tissue nowadays? Do you have your, your nerves grown back or is it still somewhat numb?

A:
And on the original. Yes, I still have feeling it's, it's quite functional. And on the new surgery side, there's still some, I have done my own kind of massage along the scar lines, to, to restore, to restore feeling, and it's been what, three years now? Almost four years. So, I feel pretty good in that area.

K:
And how do you feel the experience of being a young breast cancer survivor affected your vocation as a pastor and a mentor, spiritual mentor?

A:
Thank you… Huh, let's see. Lots of, there are lots of little areas I would point to where that was, where the experience of having cancer so young really was helpful to me. I, there were several members of my congregation, younger women, who were diagnosed and I think I was able to be with them very comfortably. During that process and to help them to claim their power, the power of choice about treatment and the power to choose life. I think a diagnosis at such a young age and where it came in my life after this period of depression could have really sent me back into, uh, into a dark place. But I think my spiritual life and my, also I had a woman pastor at the time and she was there with me, and a women's spiritual group.

Uh, all of those things for support were really, really important, claiming parts of my spiritual tradition, to be able to lament and be angry and as well as hopeful and hopeful and happy. All those things were there and it was really important.

K:
Your kids were at the age where they're verbal but not as body-self-conscious as like a tween would be. Do you feel—I mean it's never a good thing for a child to have to experience their parent in a trauma state—but do you feel like it was something that taught them something about you and something about life and was there some good came out of it for them?

A:

That's a great question. My daughter is now 37 years old and she was six and seven during this ordeal with losing my mother and then with the breast cancer. It's very interesting, when I came home from the hospital after this major surgery I had several drain tubes still in my body tissues and I would dump them out in the sink and she wanted to watch that. She wanted to be part of that--help me with that. I think it helped to contribute to her vocational choice to be a medical practitioner. She is a midwife now.

But there was another aspect of it that wasn't so great. And that was that she developed a fear at a very deep level, a nonverbal level, that she would lose her mother. Because here I had been through this grief over losing my mother, and then I had cancer and this major surgery. And, and it was, it was not verbal for her. And she only really uncovered it after I retired, moved out to Portland to be near her, and she was trying to get pregnant, and it wasn't happening. And she finally, through the help of some spiritual counselors, uncovered this deep fear that becoming a mother is connected to loss. And, after she was able to bring that to the surface, she was able to get pregnant and now has two children. Boy, that was a very deep and long process.

K:
Sure. And then she was able to help you identify the source of your disease in the end. That's amazing. She was able to lead you to that wise practitioner who could see more deeply and take more time, look more thoroughly. Do you feel like she gives herself a little credit for that in the end?

A:
I think she does. You know, she, she feels a little ambivalent because she would love not to have had to do that. But yes, I think she has been able to touch into the part of her that is a healer herself and to be with other women in ways that I think are much deeper than than just a midwife who catches a baby.

K:
I want to go back to a couple of the wise women that you've mentioned—Dr. Susan Love and her immense book on breast health—are there any memorable bits and pieces of that book that are still with you that you want to mention just to inspire others to go and get that book?

A:

I just think at the time, it was so helpful to have the possible treatments and survival statistics laid out in that book. That was so helpful to me because I think the first time you hear cancer, you hear, “Oh, I'm going to die.” And obviously we all are, at some point, but there can be lots and lots of life between a cancer diagnosis and death.

And so I thought that was very helpful to see that breast cancer is not a death, a death notice. And to see lots of—lots of different options laid out in her book. Those were the things I remember most.

K:

The other wise woman that I'm thinking of, I don't want to skip over the opportunity to ask about the contrast in spirit--since you are a spiritual person--between that experience of looking for your second primary breast cancer occurrence in the kind of typical standard hospital setting, I'm assuming, and then going to a private clinic where you're getting a little bit more attention, or even just the, the atmosphere and the environment of those two, as well as Dr. Thurman's person herself. Can you describe a little more about what that contrast looked like for you?

A:
Mm hmm. Oh, let's see. There's a contrast for me between people who are competent intellectually and physically competent, and then there's people who are caring. Uh, and I think I, I referred earlier to, I chose the surgeon who cried. And, and both of the women that I was choosing between were incredibly competent. The other woman gave me lots of statistics and lots of reassurance but I think the emotional piece wasn't there. Amy Thurman, again, an incredibly competent, and the thing I felt from her was dedication—like a commitment that women should not die from this totally treatable disease. And if she can help it, she's gonna make sure that that, that your survival chances are great.

Um, but again, there was the care, the follow up call I got from her: “How are you doing with this knowledge?” Um, that makes such a difference. I also, I, I want to bring in there, I had friends, several groups of women friends who made sure to create kind of a ritual for me to surround me with love and lay hands on me and say, you know, we're, we're going to be with you through this ordeal. And the power of feeling that love and support physically cannot be underestimated when you go into something like this. To feel lifted up by the energy of people who love you.

K:

Hmm. Are you describing the first instance or the second instance?

A:
Uh, I think it was more the second time. The first time I, I was very private about my ordeal, I think. Almost maybe a little ashamed about being so young and having breast cancer. There is this thing about my body is betraying me. It's, it's not functioning. "What did I do wrong?" And I think that's a really important thing to, to look at. It's often what happens when we are, when something like this comes to us. And to, uh, to be able to say, you know, "I didn't do anything wrong"
It's really important. And the second time around to have, to allow myself to be surrounded by people who affirmed that. "You haven't done anything wrong."

K:

Hmm. Hmm. Yeah. Just even being public with your diagnosis is one step towards saying, "I haven't done anything wrong because if the shame is overcoming you, then you have to be private about it.

A:
Right.

K:

So you had just arrived in Portland and you already have that tight knit of a community around you to support? Was that a church related group?

A:
It wasn't. It wasn't. When I first came to Portland, um, as a retired pastor then, I was committed to creating opportunities for women to express their spiritual inclinations without a rubric of a church. And so I would talk about it to every woman I met: “I'm going to have a gathering at my house and we're going to just do spiritual things without talking about God.”

And so I used to put together a monthly gathering called the Women's Spirit Gathering. And I'd have about eight or ten women each time and we'd have some experience of going deeply inside and or outside and expressing, through poetry or just conversation or song or whatever—those impulses.

And so the group of women that I gathered around me were from that. They were from everywhere. Yeah.

K:
Hmm. Do you still meet with them?

A:
I do sometimes. I had a gathering back in, um, March.

K:

Well, it's really refreshing to learn more about your story here. I feel like so far you've heard a lot of my story because I write about breast cancer in our little writing circle, but you've been writing about family dynamics and adoption and racial tension within the family. And so I've heard that part of your life and I relate a lot to that as well because that's, that's definitely part of my life as well, but it's wonderful to hear your breast cancer story more publicly together, and to share that with others. I knew it would be lovely perspective that you would share and as is always the case, your situation is so unique and your story is beautiful. And I feel like even though it is a very, very unique story, it is, it is so relatable and I think it'll be valuable to listeners. So thank you so much for opening your heart in this way.

A:
You are so welcome.

K:
Is there anything else that you wanted to talk about?

A:
You know what I wanted to share? When I had this second surgery I wasn't any less scared than I had been the first time. Right on the, on the days before surgery, I, I got pretty, pretty scared and I mentioned it to my daughter and she said, well, mom, you know that you can-- when your surgical team is all there and you're all prepped for surgery, but before you go in--you can call a timeout and the team has to come and listen to you. I was like, “Oh, really?” So, I had made up my mind that I would do that. I already had an IV in that was putting me in la la land, and they were about to take me under. But I said, “Timeout, I want to talk to you all." And what came out of my mouth was, “I want you to know that whatever you brought with you today, any pain, sorrow, discomfort, whatever, I want you to be able to let go of that now and be with me and I want to give you a blessing. That the good that you do to me will come back to you.”

And then they put me under.

K:
Wow.

A:

My surgeon, according to my husband and my daughter, she came out afterward to tell them that it was over and it was successful. And she said, "I've just never had that happen before where someone blessed me before the surgery." So it meant a lot to her and it meant a lot to me to be able to offer that to those folks. So know that you have a whole lot more power and control over what's happening than you might think.

K:
Yeah. What a wise daughter you have.

A:

Sometimes I think she's older than I am.

K:
Wow. Well, thank you, Avena. It's been lovely to hear your story.

A:
Thank you, Kathleen, for giving me the opportunity to share it.

Today I'm just talking from my own experience about some of the simpler ways to "stay in" the breast cancer community as an active advocate. 

Here are some of the organizations that came up:

After Breast Cancer Diagnosis gives and trains mentors here: https://abcdbreastcancersupport.org/

Stand Tall AFC is the flat visibility organization that I work for: https://standtallafc.org

Lobular Breast Cancer Alliance welcomes advocates of all types: https://lobularbreastcancer.org

Wildfire Magazine is here: https://www.wildfirecommunity.org/

AskEllyn's blog is here: https://askellyn.ai/lifestyle-blog-sharing-breast-cancer-wisdom-stories/

Blessing Box, out of Texas, is here: https://blessingboxproject.com/

Knitted Knockers is here: https://www.knittedknockers.org/

Transcript:

Today I want to talk about advocacy, and I realize that I have so much to say on this subject that I think I'm gonna do two episodes on it. So, this will be the first of two in a two-part series, and I think this is a really important topic. I kind of wish that I had addressed it earlier. I've had a lot of folks asking me about advocacy lately, and it's a tricky topic because you don't really approach it in the same way in other parts of life. Um, we don't see a lot of people, uh, for example, you know, when you get diabetes, you don't hear about diabetic advocates, but you do in the breast cancer community a lot. And I think it's because it's a women's health issue. And women's health issues, usually they involve some amount of maybe injustice or a lack of power, or a lack of notoriety, traditionally. I think that that is not true at this point about breast cancer, but for whatever reason, the breast cancer community has really pushed itself into the public eye in so many different ways. And so now being an advocate in this space is very normative.

And yet most people don't know as they enter the breast cancer community as a new patient, what it really means to be an advocate. And if they have permission to be an advocate. So advocacy is actually one of the main reasons that I started this podcast. I wanted to tell the stories of all of the amazing advocates that I've met in the world, and I meet more and more every year, and I never seem to run out of interesting advocacy stories, and yet I've never really qualified that... I've never said, well, this is today's advocate is as I'm interviewing people. So I've done a poor job of defining what an advocate is and. That's mostly because it's pretty hard to define. It is so broad reaching and multifaceted, and it can be very simple or it can be very complex. And so today I wanna talk about the ways to do advocacy that are simple.

And next week I'm gonna talk about the ways to do advocacy that are a little bit more complex and involve a little more education and oversight. Uh, maybe some mentoring, maybe some coaching from others along the way. So first I wanna define my. Kind of idea of what it means to be an advocate in this context.

Unfortunately, the word advocate stems from a Latin word, which means lawyer. And so a lot of people when they hear this word advocate, they think about legal spaces. And I, most of all, because I actually had one of my, uh, most recent jobs actually was working for, uh, the foster care community. .

There's an organization that's a national organization called CASA, which is court appointed special advocates, is what CASA stands for.  And CASAs are volunteers that go into the court system and advocate for foster kids in a way that their attorneys can't. And I won't go into that because it's a totally different subject, but like most people, I have the same association of the legal system when I hear the word advocate, but in our culture and in our language, advocate means something different. It means supporter of a cause or public support of a cause or a group.

And that's what we mean when we stand in the breast cancer community and use the word advocate or the word advocacy. We just mean support and raising your voice in some way. Or doing an action in some way that supports this cause or this group, or in most cases, a subgroup of this larger group of breast cancer patients and breast cancer science and all the different ways that we need to be active in breast cancer.

And so the simple ways that you can do that, uh, and still call yourself an advocate legitimately, are to raise visibility and support in any of the niches that are involved in breast cancer culture. So first off, visibility. What does that look like? Well, it means raising awareness and showing up in groups where there's under, or misrepresentation of a minority group. So in breast cancer, there are many minority groups. There are the typical minority groups which have to do with race and gender, and then we have other minorities that have to deal with subgroups of diagnoses and, um, subgroups of, of breast cancer itself.

So we have the triple negative subgroup that represents about 15% of the total population of those diagnosed with breast cancer and the lobular breast cancer subgroup, which also represents about 15%. And then there's inflammatory breast cancer, which has a smaller percentage. And then there's other kinds of even more rare, uh, diagnoses like LCIS, for example, which is pretty rare, um, as opposed to DCIS, which is the more common type of precancer. And then there's the markers, which triple negative does refer to, but there are people that are triple positive and that's a pretty rare category of markers and diagnoses. So, I don't think that there's any triple positive advocacy groups out there in the world. But there are triple negative advocacy groups and um, and then the category of metastatic stage four cancer is another major subgroup in breast cancer culture and breast cancer community that is highly under and misrepresented, um, in terms of the number of dollars that go toward the research to pro provide a cure.

Traditionally, although there is more and more research now. Oh, and I didn't mention, there's also the subgroup of the type of closure you get after mastectomy. So that's another area where I am highly involved in raising awareness and visibility is for flat closure as opposed to the main. Kind of closure that gets a lot of support and accolades right now, which is implants, um, as a, a way of walking away from mastectomy. And then deep flap is the other way that is a little bit more commonly endorsed by the medical community, but flat closure is a lot less endorsed in this day and age.

So raising visibility, what does that look like? Well, it can look all kinds of different ways. It really basically means just not staying hidden in your identification with a particular minority group or a niche of the breast cancer community.

So being active on your own social media platform is actually an active advocacy. So even if you never leave your house or talk to another person in real life about the kinds of things you're dealing with. In your subgroup of the breast cancer community, if you feel like you're underrepresented and that that topic or that diagnosis or that subgroup is not getting as much visibility as it should, you have the option to go online and make a statement to your community or the wider community at large about how much you care about that.

And that is raising visibility. And in my book, that is advocacy big time. And I think that's the way that most of us start as an advocate is just going onto Facebook or Instagram or various other social media platforms and telling our stories and telling why this part of my story is really important to me and why the fact that other people aren't seeming to value that part of my story or that part of my breast cancer experience.

Uh, is is even more important to me to bring it into the light when it seems to be being shoved into the darkness or into the corners. And so we have an amazing tool at our disposal right now to raise awareness and raise visibility for all of these things. And we can do it in isolation as a single agent, or we can do it in community and in groups and non-profit and other charitable organizations.

So when you want to attend a larger group gathering that is for advocates in particular, you do have to many times have a sponsoring group or agency or nonprofit that you're identified with as an advocate and that. I will leave for next week's exploration of advocacy because that's a little bit more, um, of a complex relationship with advocacy than what I was gonna discuss today.

But in terms of visibility and support, um, I just wanted to say that you are counted among us as an official advocate, even if you aren't associated with a nonprofit, a government agency, or some other charitable organization, even though you might not get into NBCC's project LEAD, for example, without an organization sponsoring you or, um, you may not get to be a part of something, uh, that would call you an advocate and bring you up to the stage as an advocate, quite as readily. If you're not associated with a larger organization or community, you still are an advocate. I just wanna clarify that, uh, because the advocates that I have coached and led, for the Lobular Breast Cancer Alliance sometimes get a little confused about that.

And if they're confused, I'm sure that the general population of. Breast cancer survivors is also somewhat confused about that as well. So the second area of lighter weight advocacy and the ways that we tend to start out as advocates in the world would be, uh, as a "support agent", an agent of support.

So there's visibility and then there's support. And there's also probably a hundred ways that you can show support or provide support, either in person or um, through the mail or online. Lots of different ways. So I'm just gonna list out some of the ways that other people have supported me. I had my local breast cancer support group that was here in my rural area in Oregon that was ready to catch me first off.

That was the first place that I went for support personally and where I gave support personally by showing up to an in real life, in person coffee shop meetup, and talking to other brand new survivors and patients in treatment. And then the next place that I went after that was to a mentoring organization to receive a mentor.

I went to the organization called After Breast Cancer Diagnosis, ABCD, and um, all of these organizations that I'm mentioning in today's episode. I will definitely list in the show notes with links. Um, and ABCD provided me with a mentor and my mentor, Lori, uh, was also a member of the LBCA, and she's actually the executive director of the LBCA.

So that was the third organization that I received support when I started volunteering for them. Another place that I went for support, um, very early on was, uh, for physical needs. So I went and asked for a mastectomy pillow from one of the many organizations and individuals across the US that provide mastectomy pillows as a service to other patients through the mail.

And the one that I received my. My mastectomy pillow from was called a blessing box, and, uh, I'll leave the, the link to that below. But I've since found out about other places all across the US that provide these kinds of supports. Uh, not only did I get a mastectomy pillow out of it, but I got a little mini seatbelt pillow, which was also very handy, and a bunch of other little goodies that they sent as just kind of a, a gift in the mail.

Uh, a lot of women that I know need prosthetics and they don't have their prosthetics provided by their insurance, and so a lot of women that I know go to an organization called Knitted Knockers to get their first prosthetics, which are knitted as the name implies. Um, they're knitted prosthetics, and they have, they're stuffed with a fiber fill.

So just a really lightweight. Polyester filling that makes a very lightweight breast form that's pretty gentle right after mastectomy. So those are ways of providing advocacy too. And those are ways that a person can sit in their home and not interface with people if they're shy or if they're introverts.

They can do that kind of very physical service to others, um, through the mail. And there you probably, if you wanna do that kind of work, you probably would be best off with joining with all the others that are currently doing that work, um, and maybe being a regional representative of that work for them so that your package that goes through the mail and gets to people maybe goes a little bit quicker, uh, because they live in your general area.

So I would say it's probably wise to not reinvent the wheel and do all of that kind of marketing work that gets the word out to patients, because they're gonna be going to places that they already know and that their support groups already know exist. So no need to develop your own kind of brand new program that does its own marketing, uh, unless you have a, a really strong connection to your local support groups and local breast.

Cancer recovery, uh, organizations in which you could provide it to them directly and they could provide it to the people who come through their doors. So there's all kinds of ways. Um, you know, my mentor lives on the other side of the US from me, and I receive support from her, , all, all those miles away.

And I've, I met her in person when I finally showed up to a breast cancer conference, a science-based breast cancer conference for the first time that she's involved with. Even mentoring can be very much online and over Zoom or over the phone rather than in person. So these kinds of ways of offering support and receiving support, um, they can be in any form that you need them to be in many cases.

I think that. We kind of know where our calling is when we step into the advocacy space for the first time and we think about what we wanna do in terms of visibility and support for other people. We kind of find our niche, you know, just based on what we wish we had been provided sooner as a patient, I think most of us know what was missing for us, the other ways that I have been an advocate in the world is just through this magazine, wildfire Magazine, that receives essays from. Amateur writers that write about their breast cancer experience, that has actually been one of the most powerful ways that I have received support as a breast cancer survivor is listening to the podcast that Wildfire Magazine puts out called The Burn, which tells stories over and over every single week from the voice of the actual survivor who wrote their story in essay form for the magazine.

It's powerful, powerful work to share that deeply. And again, you don't have to be an extrovert to write for Wildfire magazine. You just have to write something and submit it and be willing to take the risk of maybe not having your essay printed in that magazine that you've submitted it to. But there's very little risk in terms of being.

Known in a public way or a personal face-to-face way. You can go really deep and be anonymous, and you can even write anonymously for places like wildfire. There are also breast cancer blogs, like the one that I write for. It's called Ask Ellyn. And , there are many breast cancer blogs that receive guest appearances and guest writers.

And you can write anonymously in those cases as well. And Ellen was recently on the podcast with me and she encouraged folks to send her any form of content. Um, she said, even if you're not a good writer, you can send her an audio file of you telling your story or you overcoming the challenge that is most important to you. And she'll put it on her blog. So the barriers are very, very low, in terms of doing this. And again, even if you only write one essay. Let's say one essay a year for a blog or for a magazine like Wildfire, you can still call yourself a breast cancer advocate because you are stepping up and being public about your support and being public about your story.

You're being known as a breast cancer patient. Which is really, it's hard, it's not a part of our tradition in terms of our breast cancer behavior. Um, and you know, in, in terms of the generations before mine, , certainly my mother's generation, but even. The one in between me and her. I think it is more common to be secretive, quiet and dismissive about your breast cancer experience in those generations.

And it is becoming super common now in the younger generations to be more open, known and public and articulate about even the most embarrassing and somewhat shameful parts of our experience. And that's really the. The crux of what I'm getting at in this podcast is wanting to hear people's stories, the most painful parts of their stories, how they came through them, and how they have achieved success in that area of struggle.

Um, so that other people can hear what it was like and how it happened for them and be encouraged. So, of course, being a podcast guest and on a podcast like mine would be a wonderful way of starting out being an advocate and raising visibility for whatever issue in the breast cancer space that you have struggled through, and I welcome that.

If you're interested in telling your story with me, I'll just go ahead and tell you my email address right now. Since we're talking about it so that you can get in touch with me directly. My email address is kathleenmoss@protonmail.com, and when I reply to you at the bottom of my email in the signature part, there's a scheduling app that you can sign up right away.

And talk to me about what story you wanna tell. So there's not a lot of barriers in that case either. I think a lot of people are really intimidated and think that being on a podcast requires expertise. But this podcast is not that kind of podcast at all. Uh, you don't have to have any kind of expertise except for the story --telling the story of your own body and your own experience going through breast cancer.

That is the best kind of expertise that I can find. So I would love to talk more about what you all as listeners are thinking and experiencing and trying on as a new way to do advocacy in your own life. Um, I can tell you what I do right now in terms of visibility and support, um, what I'm doing right now.

Uh, throughout the year is I show up to breast cancer events, so I go to as many walks as I can in my region. And I let it be known that I'm flat, flat chested after mastectomy. I do that either by taking my shirt off if it's appropriate in that space, um, which it usually is at a walk, or I wear a t-shirt that has a really large font in clear letters like, and it just says "flat" on my chest.

And in a breast cancer event, everyone knows what I mean when I say flat. Um, there's no questioning that. So it's pretty clear that I'm identifying myself as a Flattie and I'm saying, come talk to me if you'd like to. So come talk to me if you'd like to as a step beyond visibility, but wearing the t-shirt is definitely a step toward visibility.

Um, I also go to walks and handout literature now, so I, I stand at a table and I hand out brochures and stickers and other information about, especially lobular. And flat closure. So those are my two little niches of interest in minority groups. Um, actually flat closure is not so much of a minority. There are still about half of us that ask to go flat after mastectomy, but it's a perceived minority and it is a choice that is being squelched for whatever reason.

For most surgeons these days, they don't mention it as a choice. So because it is under and misrepresented. In the medical space, we see it as a minority kind of cause. So I wear T-shirts also for the lobular community and say, ask me about lobular cancer or ILC. Um. I wear those in the conference settings , or just community settings where a breast cancer contingent is present.

So today I just got a brochure from a another breast cancer survivor about a gathering around dragon boat racing, uh, where there'll be hundreds of breast cancer survivors there because they are dragon boat racers or their supporters or families. And so. In that case, I'm going to have to decide whether I'm going to wear my flat garb or my lobular cancer garb.

And I'll definitely bring , both of those brochures because I always like to bring all of the brochures that I have and, uh, share them depending on who I'm talking to and what their need is. So for me, I have to kind of choose between those two groups. I'm very equally committed to both the lobular visibility, raising awareness raising, and the flat closure visibility and awareness raising.

But I think for most advocates, they have one in particular that they are favoring and more passionate about.

I still go to breast cancer support groups, and I have also a general cancer support group, so I show a lot of visibility in those groups beyond just sharing my personal struggle and my experience and my resources. I also almost always bring up my passion for flat closure awareness and lobular breast cancer awareness

I went to a, a fitness retreat about a month ago, and of course brought all of the brochures and information there. And depending on the conversation that I would have with folks and their particular passion or bent or struggle, I would share a particular piece of literature with them, um, after getting to know them.

So that's a very personalized way of. Showing visibility and it, it kind of goes a little bit into the area of education, which is, I'll save that for next week's. Little bit more complex discussion on how to be an advocate in the education and science spaces, but those are some of the contexts that I am visible as a, a particular kind of advocate, doing particular kind of visibility work

when I go into my hospital system, I carry those brochures as well and I make an attempt to go into the library as well as sharing with my clinicians those brochures. And , again, that is a little bit, um, bordering on education, but sharing brochures is not. Being an educator, it's just handing, handing things off.

So I would like to encourage you if you're interested in getting brochures and sharing them in those settings, like with the library at your hospital or with your clinicians, when you go in to see them. You don't have to call yourself an educating. Advocate or an educational advocate, um, you can still call yourself a visibility advocate in that case because you're just raising awareness and visibility by handing a piece of paper over whether they ever read that piece of paper or not.

You're making it visible to them, and so that's kind of a borderline issue. Or a way of being an advocate, and you don't have to have anyone's permission to do that. I just wanna say, you can, you can get their brochures. You don't have to have a relationship with the organization that produces those brochures.

You can, but you don't have to. You can ask for them or you can print them out yourself in many cases. And just give them out to the folks that you run into in your life. And you don't have to have knowledge to back it up or a schpiel or an elevator speech or anything. You can just carry literature around with you about the thing that you care about, getting visibility and, and just maybe place them out in places where, you know, breast cancer survivors or their clinicians are.

So that's a pretty powerful way of, promoting visibility for your niche. So in the two organizations that I work with, Stand Tall, AFC, uh, which works for flat visibility, and the Lobular Breast Cancer Alliance, which works for lobular breast cancer visibility. Those organizations will give you brochures.

Or we'll send you the PDF to print out your own brochures. And they're very happy to do so. Whether you are an official advocate of theirs that's been trained and is being ongoingly supported by them or not. So that is a way that they are very supportive of you just taking the first little step of sharing literature.

And that is a. Like I said, a powerful way to promote visibility and awareness that is bordering on education because if the person does actually open it up and read it, they will be educated because of you and your action. So I would love, in the days between. Today and next Sunday when I do my follow up part two more Complex Ways of Being An Advocate episode, I would love to hear from you any questions or barriers or things that are intimidating to you about doing these kinds of things and just want to encourage you to try it out this week.

Um, and think about making a goal however you make goals and track your goals in your life to become. A simple, quiet, um, somewhat lightweight advocate in some of these ways, in the areas which you are passionate about, and maybe like my friend Danyel, who's studio I was at this morning and who I interviewed a couple of weeks ago.

Maybe you'll start your own thing. That is about breast cancer advocacy. Danielle was a photographer when she became a breast cancer patient, so it only makes sense that she would become then a photographer of breast cancer survivors in the way that made her feel the most powerful and resilient after breast cancer, which for her was.

To dress them up as warriors and take pictures of folks that resonate with that. Not everyone resonates with that, but for those that do, um, she's able to able to be an advocate in her own unique way using her own vocation and her skills and gifts. So maybe you'll have a way to do that as well, and maybe it'll be a lightweight way that you do that.

Um. Writing for someone else's blog or taking pictures and sharing them online in your Instagram, or maybe it'll be a more complex way, uh, like myself and some of the work that I do and Danyel and some of the work that she's doing. Um, really getting into the lives of other patients and opening yourself up to their emotions and needs.

So next week I will talk about some of those more complex ways of being an advocate that is maybe trained in a more official way, working on things like science, changing the way we do science. And, uh, as I said in my last episode, I think there'll be more of a need for activism actually in the science community now that we're going to be lacking money and support for the research community because of what's going on in the federal government.

So, um, maybe some advocacy and activism for the science community coming up, and that'll be. A good thing to see blooming and growing across the country. And um, and then the training that's involved in becoming an official advocate and some of the organizations that you might need to support you in doing that well.

So next week's talk will be a little bit more on that level of, where do you go when you wanna really get busy and make this kind of your life's work in, you know, at least a part-time way as a vocation? And that's a different kind of advocacy than the lightweight ones that I've talked about today.

So I hope you'll tune in for that if you're interested and if you're interested in these subjects of advocacy and these avenues of doing it, I know you'll really enjoy my future guests on this podcast because that's the kind of conversations that I wanna have in the future. So I will talk to you next week on the episode about Heavyweight advocacy! Talk to you then.

This week I've decided to define some terms that came up in my interview with April Stearns last Sunday, for the sake of those new to breast cancer culture. Hope this is useful to you!

Transcript:

Welcome back. Today, I'm going to be doing another one of my reflection episodes. This is going to be purely a reflection on the last episode. So if you haven't heard my interview with April Stearns from last Sunday, this episode may not be quite as useful to you, but it could be. This episode and episodes like it, where I'm defining terms--really, it's probably just going to happen in the first six months of the podcast because I'll run out of terms to define--but it's really there for those of you who would like to stay in the cancer community and become advocates and ambassadors and allies. For folks who want to learn the terminology, I just want to take some time and help you to do that in a way that's a little bit more relational. So I decided a few weeks ago that I just wanted to take a little bit more time and go in between my interviews--go through some of the terms and definitions that folks don't know at the beginning of their cancer journey.

I'm assuming that most of my audience is at the beginning of your cancer journey. And that's what I'm getting on my YouTube following. I'm getting brand new folks who are diagnosed, so please indulge me in this. And if it's not useful to you, then absolutely skip or fast forward, and join me next week because I'll have another interview next week.

But I want to just talk about a multitude of definitions that came up in my interview with April Stearns because April is a really solid, grounded, very connected member of the breast cancer community. She referred to a lot of concepts that may not be easily identified or understandable to others who are brand new to it.

I'll go through them as quickly as I can, trying not to get off on too many rabbit trails here!

The first one is NED. And that is an abbreviation for "no evidence of disease." It is a term that we talk about once we are through treatment and mastectomy or lumpectomy when the cancer is apparently gone from our bodies. This is a term that we've used probably in the last 20 years, instead of the phrase that we used to use, which was "in remission," and I am not going to pretend to understand why we made that change, or even really the complexity of the difference of those two phrases. I think they're pretty similar, really. "No evidence of disease" acknowledges that there probably still is some remnant of disease in our bodies, either circulating or not circulating, just kind of laying dormant. We're learning more and more if you're following the science of breast cancer, that there is this concept of dormancy that is a little bit frightening. It's, it's implying that there is a cancer cell or some cancer cells that are kind of "hiding out" and not waking up and then maybe able to wake up at some point. And so I think "no evidence of disease" is a phrase that's used to acknowledge that fact, that there may be disease in a body, but it's not showing itself by symptoms or certainly not visibly in scans or blood markers.

Any kind of surveillance that we may be doing (which usually we're not doing after we've done all of our treatment or had our lumpectomy or mastectomy) but if we were to do, any kind of scans, if you do follow up mammograms, if you still have some breast tissue in there, then you're considered to be no evidence of disease until those scans show something.

And then there's a similar term called "no evidence of active disease," so you're adding an A in before the D, and that is usually used in reference to a metastatic patient, so someone with stage four cancer that is considered to be chronic. Active disease is kind of the default for a metastatic cancer patient, but many, many times you will have the active disease and just stop, either in response to treatment or randomly just stop growing, and just sit there and not grow anymore.

And that is kind of a signifier that there's a little bit of a respite time and you either continue with treatment or not continue with treatment, but there is a lack of growth happening. And so that is what is meant by no evidence of active disease as opposed to no evidence of disease.

The next term is survivorship. This is a very broad and vague term that I'm sure has many different definitions depending on who you're talking to. So I will not pretend to know a universal definition of it or present that to you here. But the most broad way I can describe it is just the period of time in your life after which you have had no evidence of disease after having breast cancer.

Survivorship is what follows breast cancer in a given patient's life. So it is all the time and all of the issues and quandaries and curiosities and frustrations, lifestyle modifications that come after breast cancer. When we're talking about survivorship, we're usually talking about a lifestyle change that happened to us that hasn't been reversed, hasn't been corrected or changed like medical menopause, like infertility, like, "How am I going to find out if I have breast cancer again when there's no good scan that can show me whether it's coming back until it's already back?"--those kinds of issues that come up after you've had breast cancer once and, you're just, you're, you're not back to normal yet. And that's Survivorship. Now, some women do go back to normal. Some women get cancer after they've hit menopause and they're not fertile anyway and they're not worried about recurrence and how they're going to track their likelihood of recurrence. And so those women are not concerned with survivorship. They don't identify as a survivor as strongly as the rest of us do.

So survivorship is more of a term you'll hear used in the young community of survivors of breast cancer, because the younger we are, the more our life is altered by breast cancer in a permanent and unforgettable and maybe unresolvable way. And so survivorship is a term that has some negativity associated with it.

It is not a term that we use. with a lightness or a sense of pride. Usually it is usually accompanied by grief. And that is my experience. That is not everyone's, but that is a loose definition just from my own perspective and experience of listening to other longer term survivors talk about their experience.

I'm still a very early survivor, but I'm, I'm not shying away from educating others. As an advocate, because I'm an educator by nature, number one, and I do believe that early on in your journey is when you're the best at educating others who are new. So. I'm certainly not the expert, but I'm willing to educate because I just see the value of it so, so much.

And speaking of young survivors, that's the next term that I wanted to define or attempt to define here today is young survivorship or the young survivors. You'll hear this referred to as more of a matter of pride and identity among folks who are diagnosed young with breast cancer. The word young is hard to define, and it definitely means different things to different people. I think that generally it is the case that. At least it's going to mean that you were in your 20s and 30s when you were diagnosed. And sometimes it will also include the next decade of being in your 40s when you were diagnosed. Almost always it's referring to the age of diagnosis and not your current age. But different organizations will have different parameters and boundaries around what they consider a young survivor. All I know is that Wildfire Magazine, which is the subject of our last interview, does define it by being in your 20s, 30s, or 40s when you were diagnosed and there's also a couple of other organizations that may define it differently. I have a local organization that does. It just says 20s and 30s, not 40s. There're some that go up to 45 and not 50. So it's a little bit loose and you, you kind of have to ask when you hear this, phrase in your community.

If you're wondering if you are included in the group, you just kind of have to ask cause it's not always laid out. It refers to not just those people that are diagnosed young, but all of those issues that are specific to a young survivor. So an early menopause, that fertility issue, some of the, the stronger reaction to a lack of estrogen in your body.

Even in menopause, we have some estrogen circulating that's created in the pituitary gland in the brain. Even if we don't have ovaries, there's some amount of estrogen that's circulating, and estrogen is such a healthy thing for our body. It's good for our heart. It's good for our brain. It's good for our skin and our vagina and all the things.

And so when you take it away completely, which is what these drugs do--not just the anti-estrogen drugs, the endocrine therapy drugs-- but also chemotherapy drugs can really strip you of your ability to circulate estrogen. And it is such a stark contrast when you're young and you're not gently evolving into it the way we were meant to as we go into perimenopause and then menopause.

So young survivors cling to each other because they're all experiencing these huge lifestyle and body transformation issues that are hard to resolve and really, I think they really induce a lot of anger and frustration in most of us. I do not count myself generally to be in that camp of young survivors because I was already really well through perimenopause when I got breast cancer or when it presented itself with symptoms. I was aware that it was in me, you know, 10 years prior when I was 40 and just entering perimenopause, but it didn't really come into my life in a way that needed to be addressed until I was almost 50. And so I'm right on the edge of being a young survivor and then not a young survivor. So hopefully that's helpful for folks. I definitely have a lot of empathy and interest in exploring the stories of young survivors on the podcast.

Similarly, there's a phrase that we referred to in the last interview called "Medical Menopause," and that is just referring to the fact that you went through menopause in an unnatural way because of medication that you took, either chemotherapy or endocrine therapy, which is an anti estrogen drug, either tamoxifen or an aromatase inhibitor like Letrozole and Anastrozole. So medical menopause is medically induced menopause that happens very suddenly, causes extreme symptoms of menopause and can be really, really hard to grapple with. It's often the main thing that is being discussed and that women are comparing notes around on Facebook groups, for example, or support groups.

So it is a huge topic of discussion. We will probably address it in at least half of the interviews that I sponsor here on the podcast. So it is something we will refer to a lot. And if you don't understand what that means, it could be confusing. It just means that you got menopause and usually irreversible menopause because of either the chemo that you took and or the endocrine therapy that you took because of your breast cancer.

There's a phrase that we used in the last interview called "Recurrence" and I think most people know what this means, but just in case you don't, I don't want to make any assumptions. Recurrence is when your cancer comes back. In any kind of cancer, it's always called recurrence, and recurrence could be referring to another primary instance of cancer. So another cancer that grew from a baby seed just like your first one did separately from your first one, maybe in a whole different breast or a whole different part of your breast. Or it could be in the same area coming from the same cells that were able to circulate somehow and hide out somewhere in your body.

So recurrence is just that general term we refer to as breast cancer coming back and there's a huge amount of fear of recurrence. And so the phrase "Fear of Recurrence" is a very, very common phrase in our vocabulary in the breast cancer community. And then we talked a little bit about this when I had Marquita on as a guest.

The, concept of HER2 positivity, April referred to this and, she said that she had estrogen receptor negative and progesterone receptor negative, but HER2 positive cancer. And that is just another combination of those three factors, those three markers that we talked about. in a former episode, but I just want to reflect a little bit more on HER2, because there were a couple of things I didn't say about it in my reflection on Marquita's interview.

And that is, HER2 status can really change. It can go back and forth, which is a little bit, maybe not as intuitive. Estrogen receptor status usually goes in the direction of negativity. We usually all start positive. And if you get metastatic occurrences and a lot of times that will go to negative status instead of positive status, where HER2 can go either direction it really can go can start negative which often does and it can go low or positive which is kind of on a gradient.

So it's it's kind of a adaptable marker and you cannot ever take it for granted that your her2 status is going to stay the same over time. So if you have metastatic cancer, especially, you want to kind of watch your HER2 status, see if it develops into positivity or low status and then if it does, you can treat it with a drug.

And there are a couple different drugs now that we treat it with and like April said, she was on Herceptin for 13 months, so a long time on it. But it is helpful because it gives us a way to treat that type of cancer and that marker.

And then we have a couple of terms that are more referring to the type of closure that April got, which was a flat closure.

And the two terms that we use, um, in the area of flat closure are "Aesthetic Flat Closure", and Goldilocks. Those are two terms that you may not be familiar with and they're really just referring to the way that either your breast surgeon or your plastic surgeon is closing you up after mastectomy if you're not getting an implant or a tram flap or diep flap procedure.

So I'm just going to do some kind of light definition of these terms and a little bit of background. So aesthetic flat closure is a medical term now. It was not a medical term, I think five years ago, but it is now considered to be normative in the medical community and the surgical community. And it was fought hard for by those advocates that are fighting for women to be offered the option to not reconstruct after breast cancer, after mastectomy.

And those that are very happy that they didn't get an implant and also those who did get implants, but who are, or were experiencing incidents of breast implant illness, which is a very common autoimmune disorder--a thing that happens when you put an implant into your body when you are prone to having autoimmune issues.

So there are a lot of women who are very passionate after having their implants explanted--that every woman who steps into a surgeon's office should be offered and, educated about the option of aesthetic flat closure. The reason it's called aesthetic flat closure is that traditionally, if women didn't get implants, they were left with extra skin that just, really was uncomfortable, ugly, just kind of flaps of skin hanging out just in case they ever wanted an implant or because maybe because insurance didn't pay for it to be made tight and made aesthetic.

But now insurance does pay for that. There are still a lot of women with extra skin and, a lot of times it will present in a way that it is interfering with movement and it is uncomfortable and, and a lot of women are very unhappy with that extra skin. So aesthetic flat closure is a way to ask for no extra skin--for your skin to be pulled tight against your body for there to be not extra skin "just in case" you decide someday that you want an implant.

And there's a little bit of a tricky quality to aesthetic flat closure because what I've noticed and I've been kind of entrenched in this debate and this community for a number of months now, I've noticed that people refer to aesthetic flat closure when they're talking about two different things--either aesthetic flat closure without Goldilocks, without extra skin underneath to pad what would have been a hollow spot... So right here, if you're watching me on YouTube, I'm holding the spot where I'm missing a lot of bulk and there's a hollow spot right here. And if I had had a Goldilocks on that side, I would have skin under there that would pad that and make me less hollow. Make me a little more perfectly flat, instead of concave.

And that would be called a Goldilocks. And sometimes a breast surgeon doesn't know how to do a Goldilocks. In fact, I think most of the time they don't. So you need a plastic surgeon to do that procedure. But a lot of times people will ask for a flat closure and what they mean is they want a Goldilocks. So they want actual flatness and we don't know until we take the breast tissue out how flat or how concave you would be. And so sometimes you kind of have to go into it with the allowance of hiring a plastic surgeon as part of your team to do that just in case you need that. And so flatness is not something you can really understand about yourself in advance of that surgery.... And sometimes you need a Goldilocks to even be flat so that you're not concave. Now, sometimes you have enough extra skin on your breast that you can also make yourself a mound. And that's what I did on my other side. So you can have a little bit of extra skin and you can have convexity, a tiny bit of a mound.

And that's also called a Goldilocks and that is not called aesthetic flat closure. So there's a little bit of a kind of overlap in a gray area and everybody's body's different. So you can't really predict very well what your aesthetic flat closure will be or what it will look like in the end. You can hypothesize and say what your ideal is, and that's what every surgeon wants you to do, but you can't really know what it's going to look like until you get there.

So, the main thing to know about Aesthetic Flat Closure is it's your right medically to ask for it and be given it. And that is really important because a lot of surgeons are biased in favor of providing extra skin, just in case, so leaving you with extra bulk "just in case" you "come to your senses" and want an implant and that is to, to a lot of us in the community is really offensive and condescending and medically wrong, unethical. So, I have a particular passion around this. And so I wanted to be sure and define it because it is kind of a confusing issue.

The other issue is a lot of us have never heard of aesthetic flat closure. And so we don't know about it when we go into mastectomy. We hear about it later and it's too late to ask for it at the time when we learn about it once we're in the breast cancer community. But it is something that we're hoping we will be able to get out a little bit sooner and reach people before they hit the surgery table and be able to talk to their surgeon about ahead of time as an option.

Hopefully surgeons will offer it as an option. That would be the best case scenario. So, and then Goldilocks, of course, we will save that topic for another episode. That's when you get a skin sparing mastectomy, and the skin is used to overlap itself underneath your breast mound, and depending on how much skin you have, you have a smaller or larger breast mound as a result.

So we also kind of talked about the term progression, and that's another really obvious term--doesn't need much explanation. It just means when your cancer is growing. Usually progression is a term that's used when you have metastatic breast cancer. And so progression just means it's progressing or it's growing. So that's another term that you'll hear used pretty often in metastatic circles.

I just want to say again that I am so thrilled that I was able to have April Stearns on so early in the history of this podcast, and if you are really hungry for more episodes, like what I've been offering, if this is the first breast cancer podcast that you found by some miracle, then please go and listen to The Burn because The Burn is, I feel like the closest thing to what I would like to emulate, in terms of providing stories, background, education, insight into all the different types of breast cancer experiences that are out there in a little bit more literary sense.

And one thing I didn't say in my last episode with it, the interview with April was that you are welcome to submit your essays. to Wildfire Magazine, even if you are not a professional writer, or even a very experienced writer, She is always looking for brand new writers to publish. And she is not a snob when it comes to publishing.

So if you have something to say, and you have something that needs to be shared. Um, and you write it and you feel like it's something that really communicates well about your breast cancer experience, then do send it April's way. There are different themes you want to submit it, you know, and ask for her to put it in the right magazine because different magazines have different subjects and themes.

But, or you can look up the subjects of the month and submit it just in time to be published. But either way, she's very willing to read and look at your. your essay or your poem. And I would love to personally read now that I have a subscription to the every other month wildfire magazine. I would love to read what you have to say myself. So I hope that you'll check it out and listen to The Burn in the meantime.

Next week I have a new interview with my friend Avena. She is a woman that I've known for about six months now, mostly online. We live pretty close to each other, but not close enough to hang out in person very often. But she is a veteran breast cancer survivor and she has had two different occurrences. She is an elder in my community and very wise woman. And I think what she has to share that is of value is around the topic of discernment. And she has a beautiful story wherein she tells about just fighting for her amount of time that she needed to make up her mind and do her research and find out what was best for her and kind of holding her doctors at bay in such a wise and careful and respectful way.

So I hope you'll tune in next Sunday and hear Avena's story. And I'm sure after that, the next week we will have another episode to kind of reflect on that. As I'm doing today, take care in the meantime!

The work that April does at Wildfire Magazine has been one of my biggest comforts in breast cancer recovery, because the stories told by her writers provide comfort and solidarity. I see April as an activist on many levels but mostly for the themes that she chooses for her magazine. Themes like "Body: A Changing Landscape" and "Fertility" and "Identity and Aftermath". She is a wonderful curator of story. I'm so thrilled to be sharing a little more of hers on the podcast. 

Wildfire Magazine is at: www.wildfirecommunity.org 

April's other podcast interviews are here:

https://podcasts.apple.com/us/podcast/107-april-stearns-breast-cancer-survivor-and-founder/id1451816690?i=1000567583964

https://podcasts.apple.com/us/podcast/well-this-sucks/id1258071561

Transcript:

K:

Today's guest is April Stearns, founder and editor of Wildfire Magazine. April has been a hero of mine for over a year now, and she was one of the first people in the breast cancer community that I discovered who really brought a lot of solace and healing in my own life when I was feeling super alone and isolated, and just not sure if I could access people that would relate to my story.

So, April has a tradition of inviting breast cancer survivors to tell their stories in short essay form and she publishes them in a magazine that's a print and a digital magazine. It's called Wildfire Magazine. And she also has a podcast where the writers of those essays are reading their essays aloud on The Burn, which is the name of her podcast.

April has 12 years, no evidence of disease at this point. And she's been in the breast cancer community from the beginning. So she's a veteran and super connected. She's done a number of other podcast interviews and I will mention them down in the show notes for you to look at and listen to because she has an amazing story. And today I want to ask her some questions that haven't been covered by other interviews. And I'm hoping to dig a little bit deeper. So I'll just tell you at the offset that April's diagnosis was hormone receptor negative and HER2 positive and she was stage three and she did take Herceptin, which is that HER2 growth factor receptor drug for 13 months, right, April?

A:

I did.

K:

The first thing that I want to ask you about is what happened less than a year after you were done with treatment. Um, you had a family member that was also diagnosed with cancer and it sounds like that changed your story quite a bit and kind of had a big decision to make. Can you tell us, start out by telling us a little bit about that story?

A:

Yeah, absolutely. So my dad was diagnosed with cancer, and for my whole family, that was a real big surprise. It was obviously surprising that I was diagnosed when I was, but even though my dad was—I think he was 61 when he was diagnosed. So even though he was more maybe in the age that we come to think of people being diagnosed with cancer, our family didn't have a history of cancer in that way. And so to first have me be diagnosed and then shortly thereafter him was a huge shock to our family. I think that the, the big thing was that once his diagnosis came, I knew immediately that I was going to be his caregiver. I didn't have any question about that, number one, because of my proximity to him compared to my brothers. I was just much closer to him. My mom had already passed away. It was obvious he was going to need care. And I had just been through it. You know, it felt like an opportunity to maybe give back to him some of the stuff that I had learned through my own experience. I was like a cancer baby. I had no idea what I didn't know yet, but I felt like I knew a lot and could help him with things like chemo side effects. The insurance stuff, you know, logistics around cooking, cleaning, just getting him where he needed to be and comfortable. And it felt really, really good. It suddenly felt like there was a reason why I had been diagnosed and I had a purpose to fulfill. And that was, I think, really helpful to my mental state at that time when I was just wondering, okay, what now?

K:

I've heard you tell part of this story and it sounded like you had a big crossroads at that point when you make the decision to care for your dad.

A:

Yeah, I think I was really grappling with the “should I stay in cancer land or not” question. And prior to my diagnosis, you know, I didn't have any connection to cancer and I had a completely different career. I was a conference producer. So when I got to be his caregiver and I got to give back in that way and come face to face with how much I didn't know in my own survivorship and how much support I still needed, even though I was, you know, NED and supposedly released to the wild by my care team, being able to care for him in that way, like I said, it gave me so much purpose. It made me feel like, okay, I really do want to stay in cancer land and try to help others. It feels good to me. And, um, I wanted to do that anyway I could. I remember my therapist really kind of feeling like, Hmm, is this the right choice for you? Are you sure? And I just felt like I have never been more sure of anything. Like I really need to find a way to, to try to give back.

K:

What was it like quitting your job at that point? 

A:

You know, it ended up being easy. Um, my employer ended up not being as supportive the second time around when my dad's diagnosis came and really felt like, you know, we already did cancer with you. We already supported you through these 13 months, you know, from diagnosis to end of active treatment. He really wanted me to get back to quote unquote “normal.” And I also felt really guilty for the fact that I was at diminished capacity. I didn't know that going in. I don't think anyone really knows the exhaustion and, you know, chemo brain and all of that stuff that kind of comes with going through treatment.

And so I was that person, um, in the chemo lounge on my computer, you know, trying so hard to meet deadlines and just keep working, working, working, working at nights, like all of it. And then when my dad's diagnosis came, I actually didn't ask to quit right away. I asked to go part time and that's when, you know, he threw up those, these big roadblocks for me and said, "you know, I don't think we can support you doing that. Isn't there anyone else?" And I was really turned off by that. It was offensive to me that he would ask that I had been working there for years and years. And so I just remember I worked from home. He was, you know, many States away and he kept me on the phone for over an hour. I was crying, I was pleading my case. And I remember my husband just coming and quietly opening my office door and mouthing to me, just hang up. You don't have to do this, just hang up. And so that's what I ended up doing. And, um, it ended up being the best thing. It's funny. I just recently in the last couple of years discovered a message from him on LinkedIn that I didn't even know was there from a year later asking me to come back and try it again. I'm actually kind of glad I didn't see it. Cause I probably. Would have, you know, I was a year into, you know, grieving my dad's passing, trying to figure out how to move forward. And I might've gone back at that point. And so I don't know, the universe saved me from that. And I didn't even know it was—it was waiting there. Something else was calling to me. And so I did something else instead. 

K:

It sounds like your dad passed away pretty quickly.

A:

He did. He, it's interesting. He was, um, I think about five and a half months from diagnosis to passing. He had a few symptoms prior. So I would say, you know, he started being sick maybe in January of that year. That was 2014. And then he passed in September and was kind of eerie when I looked back and counted up how many days I literally got from him from diagnosis to his passing. And I literally spent a hundred days with him in that time. He wanted his weekends cancer free. So I didn't, I didn't go to his house on the weekends. He saved those for hiking and riding his Harley motorcycle and things like that. But Monday through Friday, eight to five, I was there with him and we got a hundred days and I think it was a, it was a real gift. I'm really glad I got to do that with him.

K:

Yeah. Yeah. I can relate. I had the same choice with my mom and it was absolutely no, no contest. I was, I was there for her as much as I needed (she needed) and I'm so glad that I had that opportunity. So while you were caring for your dad, what were your thoughts about future employment or vocation? Were you already dreaming up the magazine or did that come later? 

A:

You know, I don't think I really had the mental space in that time that I was caring for him, and my story was complicated a little bit by the fact that my mom, as I said, had passed away and she died seven years before my dad and my dad had not moved her things out or done any kind of work after she died to kind of settle that part of, of our childhood home. And so after my dad passed, I had a real big job on my hands to kind of settle the estate, clean out the house. It was a big house and my parents had lived there for the 31 years that they were married. And so I think I just dove into that as a way of kind of dealing with my grief. I just needed to keep busy.

And so it wasn't until the, it was about 18 months, I would say, until I was able to sell his house and have everything kind of buttoned up and put away. And it was in the last six months of that, that I think I started to really wonder what was next. And coincidentally, I ended up enrolling in a writing program, um, an expressive writing program in my town. It was an in-person thing, and I started going to it to deal with the grief of my dad passing, and also kind of coming face to face with my own survivorship and the survivor's guilt that I had around it, and the pain I was feeling that I didn't know was specific to not knowing anyone else diagnosed young. I didn't have any connection to the younger breast cancer community at that point. I think they were starting to form Facebook groups and maybe on Instagram, but social media was different, you know, 12 years ago, and I wasn't hooked into that. Perhaps I could have tried searching on something like Craigslist, but I just, it wasn't occurring to me that there might be a whole community out there because all through my experience of treatment, I saw no one else in my doctor's office or in the chemo lounge who was younger. So I think on some level, I literally thought I was the only one. And it was so painful to have questions around, you know, career, fertility, sex and intimacy, like all this stuff that was cropping up from like medical menopause and really feel like I had no one my age to turn to. I ended up in this writing class. Most of the other people in there were older women, like retirees who were now like wanting to write their memoirs. But there was one other young person I found out later she was about eight years younger than me. And she was dealing with breast cancer diagnosis. Hers was actually a recurrence, a metastatic recurrence. She had been originally diagnosed one year before me, also stage three. And then we both landed in this writing workshop. And it was so serendipitous, you know, I was going through this like grief and what next and I need community and there she was—we just became friends right away and it was through discussion with her that I realized: Number one, there's others out there. There has to be, if I just found one, you know, in my town. And number two, we could not stop comparing notes, texting questions. We were talking constantly. And so that was kind of where the magazine started to develop because I just thought she is a wealth of information to me. I could see that I was to her. And then I just pictured that, you know, blowing up across and I knew it wasn't going to be a book because I didn't have the answers. I didn't have anything to share. I just wanted to make a place where we could bring that collective information and help others feel less alone. And so that's kind of where it started to percolate. And also the fact that I have a journalism background and have been a writer and used writing as that healing tool. That’s also kind of why the magazine was the resource I wanted to create versus, you know, other resources that others have created.

K:

It's such a beautiful piece of art like I'll show it for those that are watching on YouTube I'll show some of the covers in a minute, but I wanted to ask: It sounds like, just hearing your story, it sounds like your dad's vocation of being a firefighter was a big thing part of the name, at least, of Wildfire Magazine and, uh, the imagery that you kind of present at the beginning of each podcast episode is that the cycle of nature and the tendency for a forest to catch fire, um, naturally can be a healing, even though it's a devastating process. Um, how did that, can you tell the story of how that kind of, happened and, and how your dad's spirit is, is alive maybe in the work that you're doing now?

A:

Yeah, absolutely. I love talking about this. Um, So I grew up with my dad being a volunteer fire, um, fighter in our area. I grew up in the Santa Cruz Mountains. Which was an area that was kind of unincorporated. And so in order to have fire protection, it was a volunteer led company. And it was something that my dad got involved with when he and my mom first bought their property up there, I think in 1975, maybe. And really soon after that, he became the chief of the volunteers. I think a little bit by default, cause you know, there wasn't a lot of hands on deck and he was passionate and he kind of grew with the role and learned it. So by day he was working at IBM down in Silicon Valley and by night and weekend, he was a volunteer fire fighter. And so I grew up in this culture of volunteerism and this culture of fire and there was a couple of big fire, um, you know, forest fires, wildfires as I was growing up. And so I saw the devastation. I saw how the community came together. And then I saw that process of regrowth afterward. And most recently in 2020, we had another forest fire here in the Santa Cruz area and so I'm constantly reminded of it again Just yesterday, in fact, my daughter and I were driving through what they call the burn scar, you know, which is like where the path of the fire is, and we live in an area where there's a diversity of trees, but the primary tree here is the redwood—the California redwood.

And I learned as a young person, and now I'm seeing it, you know, literally happening that the redwoods are very resilient to fire and in fact need fire to unlock their seeds. And so driving through the burn scar, you can see all these brand new baby redwoods sprouting up and also the redwoods themselves—the mature ones—looked like they were devastated are completely fuzzed out with all this new growth that feels like they're going maybe through a new puberty which feels very like I can relate to that as you know in medical menopause, And so growing up in this culture of fire I just knew that there was two sides to that coin, you know, something very devastating happens, maybe loss of homes, loss of life potentially, what it can do for the forest can be really reinvigorating and can clear out all that brush and just make way for new life.

And so after my dad passed away and I was starting to think about doing this magazine. I was really coming face to face with two sides of that coin. You know, he had passed and I was still living and I was getting clarity on what mattered to me and the life that I wanted to live and how I wanted to get back. And it felt like that forest floor, you know, I was both sad and seeing myself reemerge as something new with space to kind of see that grow. And so that's the message of the magazine I wanted to give is this honoring of the destruction, the trauma, the pain. Asking that question, you know, what, what comes next after that? And what will you, what will you create? What will you hone in on? I think.

I guess I want to say to it's a little bit different than the silver lining message. I think we get in cancer. I've been really resistant to that. Um, it feels a little like toxic positivity, which to me doesn't mean that we don't need positive images. We just also need the real and we need the honesty and the space to be honest. And I think that's also what that kind of two sides of the of the forest fire also can, or it brings to mind for me as part of that metaphor.

K:

Yeah. I love that the magazine is a tribute to your dad in that way too.

A:

Me too. I'm, I'm honored to keep him alive in as many ways as I can. And he taught me so much about, you know, giving back and being part of community and taking leadership roles where possible. And, um, yeah, I, I know you'd be really proud of it and proud of me.

K:

You talked a little bit about the need to compare notes, um, being in the younger generation. So Wildfire is featuring writers that have been diagnosed prior to age 50, um, even if they are currently over age 50. And I made it just under the line, but I do identify with that generation that you're talking about who needs to not sweep things under the rug, not to just kind of go about their own lives as if cancer didn't happen. And, so I wanted to ask you a personal question about your journey that, um, is particularly of interest to me because I have found very few women to talk to in my recovery process who chose to be asymmetrical or to have, um, a single breast to go forward in life as a single breasted woman.

Um, and so I really value your insight and your experience of 12 years being single breasted. I know I've heard you say in other interviews that you, there are elements to this that you did not expect and you didn't plan for and didn't even factor in. Uh, but I do want to hear kind of what your decision making process was. How did you know it was even an option? And how did you come to this as a way to go forward permanently?

A:

Yeah, I, so it's interesting, you know, when I'm, um, doing writing workshops with people, I am always bringing this idea of, you know, what is your unique story? And what was the lens through which you saw your cancer experience? Versus, you know, leaning on the diagnosis details or the treatment course. And so the example that I use in my workshops is the fact that everything that came after my diagnosis was through this idea/lens of how to get back to parenting my daughter as quickly as possible. So my story starts with a lump found one night while breastfeeding my daughter. I had to wean very quickly, almost overnight. I was in chemo within two weeks of my diagnosis. Like things moved incredibly fast partially because of the pathology, you know, the HER2, it was growing very fast. It was already in my lymph nodes at that point. Um, and the tumor was already seven centimeters also. And so I had a course of treatment that had me having chemo first. Some people have a mastectomy first. I had chemo first as a way of seeing, you know, if the chemo would even be effective on it was a good way for us to test, but also to shrink it so that I might have surgery choices. But for me, you know, living for six months, seven months in chemo with that tumor in my breast where I could feel it every day made me feel pretty certain that right off the bat I knew I wanted to have a mastectomy. It just felt like it was so big, so aggressive. It just for me personally didn't feel like a lumpectomy was going to be the right choice. Had it stayed as large, also, there wouldn't have been much breast material to work with. Um, you know, if they’d have had to cut around that, I got lucky and had a complete pathological response to my chemo, which was lucky. I don't know why or how, you know, sometimes there's just stories like that in the cancer space. And I got to be one of those. Um, but even still, I decided to have a mastectomy. And the reason I decided to have a single mastectomy was kind of twofold. Number one, I wanted to preserve another or a breast in case I might breastfeed again, and I had hopes of having another child and number two, I wanted to preserve sensation. And that was something that I kind of came to over those six months as I kind of learned more about, I guess, my body and thinking about sex and intimacy after mastectomy. That wasn't the main thing, but it was there kind of in the back of my mind. And then in terms of my decision not to reconstruct, um, with breast mount surgery, but rather to do aesthetic flat closure, that was purely: “How fast can I get back to my child? How can I minimize surgeries?” And so somewhere in that, I saw a poster that was a beautiful image of a woman who was one-breasted. She was flat on one side and had a breast on the other. She had her arms outstretched. She, I think was standing on top of a mountain. Like she, it looked like she was a tree herself. It was such a powerful image. And my husband and I both saw it in our local cancer center. And it was just like, Oh, I want that. Like, whatever that is, I'll do that. Um, and so then when I went and met with my surgeon and, and said that that's what I wanted, he just said, okay. He didn't ask my husband if it was okay with him—you know, some of the stories I've heard since, of people having to fight for flat closure. I had none of that. He just said, okay, no problem. And I came out of surgery completely flat, no skin sparing or anything against my wishes. And, um, and, I have no regrets about it. I did wear a prosthetic breast form for about five years and it was really big. As you mentioned, I'm double D on one side now and flat on the other side. So I had this, um, they called it an equalizer and I think it was about a pound and a half, two pounds. And I stuffed my bra with it every single day, on hot days, even camping. Um, and I didn't know I was going to do that. I thought actually I didn't need it.

And then it seemed that my daughter needed something to help her with that transition to cancer treatment and after cancer. She by then was a little bit older, you know, talking and it turned out she thought I still had cancer because my breast hadn't grown back. so I felt like I needed something to kind of bridge that for her. She loved my breast form so much. She used to carry it around. She named it pork. No idea. Why? Um, but she would like slap it and pat it and sometimes I couldn't find it and she's like, Oh, it's cooking. Like, I don't know. It became this whole other entity in our relationship, but it really, I think, helped both of us. And I ended up developing a dependency on it. And then after five years of faithful service, it kind of exploded one day in my breast, or in my bra rather. And I tried to tape it together with duct tape. I did everything I could to preserve that thing. Um, and finally it was gone and I had to throw it out and go half flat while I waited to get another prescription for another breast form.

And in that time I realized I was okay with being out in the world half flat and I kind of liked my body better and it was a really interesting thing to realize I felt sexier with one breast than I ever had with two and I think I was just ready by that point and so now it's been six, seven years that I've been living half flat.

And occasionally I'll wonder, you know, how I'm coming across in the world. And if people are noticing, but number one, I don't think I really care that much anymore. Number two, if I do care, I kind of like that my body is, you know, advocating for what, what a breast cancer experience can look like and leave, you know, a body looking like. And number three, I actually don't think people really notice that much. I think we think they're noticing things and they probably aren't. So I'm I'm fine with it. I know for some people, my body represents a worst case scenario, you know, having such a large breast and then the flat side. But, um, I think the cool thing is there's so many different surgery types and different people and we can find the right one for us. And I'm just really glad there's options.

K:

Yeah, I am so amazed that you had that photo up in your cancer center. That is so amazing to me because you just don't see that kind of imagery presented very often in the breast cancer community at large. So it just, it makes me so happy to hear that that was there, and that you responded, yes please,

A:

Right? I know. Well, you know, what was also really interesting is, um, so even though we didn't have a family history of cancer, my grandmother did have metastatic breast cancer when I was young. It was after I had my flat closure surgery that I realized that she had a flat chest. But it was not something our family talked about, that was not part of, I think, her generation to be so open, you know, about either cancer or bodies and things like that. But it was funny, I realized, when I put the pieces together after the fact that her shirt fell the way my shirt fell. I remember kind of getting a little glimpse, you know, maybe inside her shirt when she would hug me or something and things looked a little different and suddenly I could piece together what I was seeing. I remember, um, kind of what it felt like to hug her too. And I didn't know as a young person that it was very different, but it was, you know, it was stored somewhere. And so I had that kind of recognition after my own. And that also kind of felt like a nice connection to her in that way.

K:

Yeah. I bet it's somehow, sub-consciously affects your confidence level too, to have had an elder in your family, someone that you trusted and valued that didn't have any shame about going around one breasted. She had, obviously she wasn't using a prosthetic—at least part of the time.

A:

I mean, I wish that, you know, knowing what I know now, I've got a million questions for her. I don't know, you know, what, how she made her decisions or anything like that, or if she had a breast form, but it's also influenced me to be more open. My daughter knows obviously everything, but it's kind of, I think, why I'm comfortable being out in the world when breasted too, because maybe someone will have that recognition at some point, you know, when they need it too.

K:

Yes, yeah, I definitely have those moments myself, like when I go to the gym, that's when my clothes are the tightest and I am always somewhat self conscious. I have a much smaller Goldilocks breast now on my right side instead of a double D like I had before. Um, so, much less self conscious, but I go back and forth between pride and loving my body just for how it is and being kind of an ambassador of truth: “This is breast cancer and it's okay. I'm not, you know, I’m not self loathing after breast cancer.” And then, you know, that kind of awkwardness, just like, am I appearing to be attention seeking here? Or, you know, do you have those moments? Like, do you ever have those doubts or feelings?

A:

You know, it's interesting because my relationship with my body has gone so many different directions since, you know, being young. And I remember dressing for cleavage and I remember, you know, that I liked how that looked and I liked that attention. I haven't felt that same feeling since being, you know, Asymmetrical, but I do have a swimsuit that has a little, like, cutout in the front, kind of where cleavage would be, and it's my most, like, obvious, you know, that I'm one breasted, I feel like and I feel really sexy when I wear it. Maybe that attention seeking still in there, you know?

K:

Mm hmm. Yeah, I'm just starting to get to where I can admit that I like to wear asymmetric clothing because it accentuates my asymmetry. Like I would have never even thought to admit that before, but yeah, it's true. It's kind of an adventure learning about your new body.

A:

I know, and I really appreciate that, you know, we're starting to see bras and different things that are designed for asymmetry that don't necessarily—it's, it's hard to like describe, but it's almost like it accentuates it or it celebrates that this is the difference in the body instead of what I used to do which was just take the padding out of one side and it was like, okay, it's obviously a bra for two breasts, but it works ok, versus this is a bra that's specifically made for someone like me. And that feels really good to celebrate, you know, it's not just a body that's working. It's great. It's beautiful. Just that way.

K:

Yeah, I felt so honored when, I think it was Eno Eco is the name of the brand that just sent me a one breasted bathing suit top/bra and I didn't get it until It arrived and I saw it in physical form and I just felt so honored honored, like, Oh, yeah, this is for me. And I matter too. And my body is a part of the collective of acceptable bodies in the world. And they made this for me. So yeah, there's something really affirming. And, and the most strong urge for me is, has been just to be honest, like the first time I took that big prosthetic out of my bra and went out in public, I felt so much more myself and authentic and I wanted to keep being that way. So that's been such an amazing process and to be able to live in a time when it's, it's safe to try that out is, is really a blessing.

A:

I think so, too. It's interesting what you said about feeling more yourself, because I had that experience, but kind of in a reverse kind of way, with, um—so sex and intimacy have been a big part of my survivorship challenges, I guess, you know, things I've needed to overcome and I realized at some point that the fact that I was wearing my breast form out in the world meant I was kind of passing as having like a normal body, you know, “normal” body out in the world and then in my home in my bedroom, I would feel kind of different, other, strange... and I wanted to flip the script on that. I didn't want to feel way at home, I wanted to feel either… I don't know that I wanted to feel abnormal out in the world, but I at least wanted to feel normal at home and go and, you know, removing that breast form really helped me to do that.

K:

Yeah, it sounds like it was kind of a surprising, fortunate happenstance that you, your breast form exploded and you couldn't get another one right away. And you learned this thing about yourself. And now it's been like, what, seven years that you've been going without?

A:

It's so funny. I mean, I think that there's probably a lot of examples of that, that we can find acceptance when we're kind of pushed out of our comfort zone a little bit and then realize it's not even just acceptance. It's, oh, this is—this is better than, than it was before. I'm not just making do.

K: 

Yeah. So you talked earlier about the idea of cancer and silver linings. And I wanted to ask you, because I know you've heard a lot of people tell their—the gifts that they've gotten from cancer as well as the things that make them really angry. And I know you're not shy about publishing the angry pieces and I really appreciate that. So I've been wanting to ask you those two things about your story. Like what is the best gift and then what is the thing that makes you the most frustrated or angry, yourself?

A:

Yeah. I really like this question. I do think there's both sides to the whole thing. I think for me, kind of the best thing that has come out of my diagnosis is the entrepreneurship and the opportunity to create a resource that I needed. I didn't know I had it in me, you know, to found a business, to lead a team of others who've also been diagnosed with breast cancer and to form a community around something. It's funny because in my previous life as a conference producer, the place I was working when my dad was diagnosed, I was really good at that job too. And I had a coworker, we were the two who worked mostly together and she was nudging me for a couple of years. Like we could do this, like we could go out on our own and do this. And I remember at the time feeling like, I don't want that risk. Like, I, I don't know. That just sounds like a lot of sleepless nights, you know, making sure that the numbers meet and blah, blah, blah. And then fast forward and all of a sudden here I am being like, I'm ready to take on that risk. It feels worth it to me, it feels important to me. I think I can do it. And I knew so little if, in fact, if someone had told me all the work that went into publishing a magazine in the cost, I probably would have been terrified and not done it. So I'm thank you, whoever didn't tell me that, like I needed to not know. I just had to go blindly into it. I think that that's been such a gift to learn that about myself, that I had it in me to, to do this. I get so much joy out of the work and the community. And, um, getting to teach people how to use expressive writing as a healing tool is such an honor. And so, yeah, I don't know. Maybe I would have had another illness at some point and somehow this would have come out. Maybe it wasn't meant to, but I'm really grateful for the opportunity to learn new things about myself and have this, this be a part of my life.

And then in terms of like the, the bad side, I think it's kind of connected because I have now lost so many people over the years. I founded the magazine and the writing community in end of 2015 launched the first magazine, 2016. In those years, I recently counted up, I believe I've lost close to 65 people to metastatic breast cancer. And I feel every single one, you know, because these are whole people that are now missing from our, our world, our universe, and the solace that I get is that if they came through wildfire, then I have their words.

You know, I, either I've published a story of theirs in the magazine, or I've heard them read their story and share their story in the, in the workshops and love. That I've had the privilege of amplifying their voice, amplifying their story, maybe helping them find a story they didn't know they had that legacy lives on.

Those echoes just continue to live. And so I hate, hate, hate, hate that people are still dying of this disease. And I I love science. I love that science has progressed and I also am angry that it hasn't progressed further and that we're still dealing with this, and so, yeah, it's, it's both those things.

K:

Thank you. I really see you as an activist, um, in your work and I know it's kind of behind the scenes, but you are choosing to publish themed, you know, magazine themes, every other month that are very daring, like on metastatic breast cancer. That is very daring in my view. Personally, when I started listening to The Burn, I couldn't listen to the episodes about metastatic breast cancer because I was so fearful of recurrence and I didn't want to add to my anxiety.

But then when my mom was diagnosed with metastatic breast cancer, I clung to those episodes and they've been the most precious to me. And I realized that's not going to be the case for every breast cancer survivor. They, people can't always handle hearing about the worst case scenario. Um, and some people don't benefit from that, but I so appreciate your willingness to go there in spite of the pain and the awkwardness, that people associate with hearing these very, very sad and tragic stories.

There's also the bright side of seeing that people are resilient enough to deal with the sadness and the lack of control over their life and their death. I just, I really want to thank you for your being bold and courageous and publishing those stories, even though they really scare people like me early on. And then also other topics like fertility that just need more airtime. Um, like I know yourself 12 years ago, nobody mentioned to you that you could maybe save some eggs and now that's more normative, but probably not as normative as it should be still.

A:

Yeah. Yeah. Yeah. I just want to circle back for a second on the metastatic stories. You know, I think that one of the things that really helped me, in my own fear around, you know, developing metastatic disease. And, you know, I still, I don't consider myself by any chance, um, scott-free or anything, even though I've been living 12 years NED, I just know that we don't know, you know, what will happen until we pass away from something else perhaps. But I found that it was almost, it was almost helping to just read and face something that was scary to me because partially because, you know, the, my breast cancer bestie who I met in that writing group so long ago, um, when I met her, she had metastatic disease, she is still here and living. She has been living with us for 10 years now. And I found that she's so much more than her diagnosis, so much more than metastatic breast cancer. And so part of my inspiration for publishing metastatic stories is also to educate the rest of the breast cancer community that, you know, life isn't over upon the day of a diagnosis. There is so much living that happens between the lines. And I love drawing that out, you know, and helping people to both experience that realization themselves, you know, as a person living with metastatic disease or just living with, you know, in the aftermath of a cancer diagnosis to realize, “Oh, I'm still here. I'm still living. I still, you know, I'm learning things about myself and changing.” and then I do hear from people with metastatic disease who read the metastatic stories and get so much hope out of them. And I think one of the things the world doesn't know about cancer stories is that they are so hopeful even when, you know, quote unquote, it's the, the worst case scenario or something so scary. I think our media, our society tends to not want to face those stories, but in that they're not seeing how much living is really happening in there and how beautiful. You know, even my own dad and his metastatic, diagnosis. He, he did so much living in those six months and learned so much about himself. He really, really embraced this idea of legacy and passed things down to me and my brothers. And I was so glad that he didn't give up the day, you know, the day of that diagnosis.

K:

Yeah. Yeah. That's a story that I wanna tell on the podcast so badly. I wanna tell the diversity of situations in which someone can be living with metastatic breast cancer. Cause I think we're so shy when we meet someone with Mets, like you just don't want to ask about all the ins and outs, but there are a few people out there that are willing to tell you and it takes away so much of the fear and the stories that you've published have taken away the fear for so many, I think.

So thank you for that.

A:

Yeah. Absolutely, and to your point too, you know, I think there's so much to survivorship, know, whether you're early stage or stage four diagnosed, there’s so much nuance in there that we really have to cut and dice and slice, you know, all these different things. And one of my favorite questions to ask people as a counter to that classic, like, “You're okay now, though, right? Like, you look so good. You're great now, right?” Instead, I feel like we need to be asking, “What is your biggest challenge in survivorship? You know, what is survivorship like for you?”

Because, again, it goes back to that idea of like, What is my life like, and what is that lens through which I'm looking at my whole experience, you know, and is it a parenting with cancer experience? Is it parenting with metastatic cancer or maybe something else, you know, that's a working, um, career lens, or maybe it's a financial lens, or maybe it's, you know, very body focused. Like there's so many different variations on this experience. So, yeah, I love having different themes for the magazine to really dig into all those different types of stories and all around the world too, you know, it's very different if you're diagnosed in an area that has a lot more stigma maybe around the experience and maybe you don't have as much community versus someone, um, you know, here in California, Santa Cruz, I'm, I feel very open and free with my cancer story.

K:

Yeah, so you touched on some of the themes of Welfare Magazine. I have, for those watching on YouTube, I have, um, the latest issue. This is the body issue, which comes out every year, annually. Um, so six additions every year, and body is one that you stick with annually and the others, a lot of them change quite a bit.

You also have a metastatic one every year, is that right?

A:

I do. Those are the two issues that I do every year. Um, they each kind of have a little sub theme, so we can really like dig into some different, um, aspects of them. But yes, in June, I always publish the body issue. And in October, I always publish the metastatic issue.

K:

Okay. Thank you. And then my entry level, um, introduction to Wildfire Magazine in print was this compilation that you put out about, I think, a year ago, Igniting the Fire Within, Stories of Healing, Hope and Humor. This is a little bit less art heavy than your typical wildfire magazine. It's really just mostly words, but it's broken down instead of topically, like the magazines are, it's broken down by age group.

So you have Is it starting with twenties or thirties? I can't remember.

A:

Starting with 20s. Yep. So 20s, 30s, 40s.

K:

Okay. So for those who want to get kind of a highlight and, um, maybe the every other month subscription is a little bit too indulgent for you. This is a really good way to start with this compilation, um, which you can get on welfare community.org. You can also find April's free pop up writing workshops.

She does a lot of free workshops. I've done a couple of those and really enjoyed it. And then this October she's starting a couple of more intensive writing experiences. One is kind of an in person retreat experience, which is kind of a new thing. And I’m super bummed I can't make it. I'm actually going to be in the Bay Area, but for other things and won't be able to go to it.

But maybe the next one. Um, and then she's also doing her “Fire Starters”. It's a 6 months project, um, kind of a mentoring and continual feedback in honing a larger body of work or a larger memoir. And that goes from this October to next March. And of course, you can get The Burn for free. You can listen to all of the essays that have been read aloud by the authors themselves as a really good first taste. And like I said, that was just so healing and so timely for me. I highly recommend if you're a podcast listener to go to The Burn. Then I want to mention too, that April has been interviewed on a few other podcasts. I think I first learned about you on the Breast Friends, which is a local Oregon podcast that's no longer being recorded, but there's still lots of episodes being aired. And let's see. The other one was Dr. Teplinsky's That was a little bit more recent and a really good interview with you about the magazine itself and some of your Your other stories. So I think that's called interlude with Dr. Eleanora Teplinsky. And I'll, I'll link to these, um, in the show notes for today.

Thank you, April, for joining me. I'm so honored to have you as one of my first guests. You were at the top of my list of people to invite on. And I hope that I can have you again, because I know there are so many stories that you have to tell.

A:

Thank you. It's an honor. I'm so thrilled that you decided to do this podcast. I think it's going to help lots and lots of people. So, thank you for letting me be a part of it.

K:

Yeah, yeah, and someday we'll meet in person, but thanks so much for all that you're doing for our community in the meantime.

A:

Absolutely. Thank you so much.

This is a follow up podcast episode to last week's in which I spoke to my friend Marquita Bass about her triple negative breast cancer diagnosis. I felt there was a little more to say on this subject before moving on.

Links:

In the podcast, I promised to provide resources in the show notes for learning more about personalized medicine in breast cancer. Here are my favorite youtube video on this topic: https://youtu.be/QS-1HZr-trg?si=A10SR7cE20tCMYPB

I mentioned that there are a lot of emerging biomarkers now, and here's a link to a LBCA youtube video that lists them and the various tests that measure them. Biggest lists are at minutes 23 and 36 of this video: https://youtu.be/2MOWI06uRak?si=3jXTllFN0aUNZh26 

Dr. Jason Fung’s book Cancer Code is here: https://www.powells.com/book/-9780062894007/7-0?gad_source=1&gclid=CjwKCAjwnK60BhA9EiwAmpHZwzwK6tUBXHYzhsKfvRd8XEDocBN6k0R3GwnXwxxmRT0kIuHhXZUTRxoCdiUQAvD_BwE

A brief video overview by Dr. Liz O’Riordan of the current state of affairs for TNBC: https://youtu.be/9NK_ZNoYGPM?si=xTRO6u_5xX9jV0DW

Transcript:

Today's episode is going to be more educational in nature. I'm making a decision at this point in the podcast to be a little more intentional in my mission to help to educate and not just entertain. I feel like when I started this journey as a new breast cancer survivor and I would log in and listen to talks or podcasts or stories, a lot of stuff went over my head and I don't want to be that kind of podcast that just assumes people are going to go and find the right resources and educate themselves.

I think for me, when I heard terms like even “Metastatic” or “Triple Negative,” the first few times I heard them, I was overwhelmed and I didn't feel like I could add those things to my plate. And I think if I had had someone that could explain them really simply and briefly, that it would have really helped me at the early part of my process to help define how much just very similar we all are.

It's not that we're that different with different diagnoses. I think mostly we're the same and it's important to know that at the offset because then you don't feel isolated from other groups of survivors. So because of all that, I'm deciding to do a little halt, a little pause, and to stop and talk about some of the terms and definitions and ideas that Marquita and I briefly referred to in my last episode. So if you haven't heard that episode with Marquita, it's a lengthy one, but it's a really important one talking about triple negative breast cancer, I know most of my listeners and fans out there, at least from my YouTube following are brand new to this community.

And, you know, necessarily so—there are people looking for information who need it desperately at the very beginning. And I don't want to be part of that elitist club of advocates who know everything and just kind of do that name dropping thing that's so irritating and requires you to go out and do your own research and find out what these things are that I'm talking about. So that's what this episode and maybe even a lot of future episodes will be for. I'm going to do some solo episodes just to keep folks a little bit more updated on some of the things we talk about in the interview episodes.

So the things I want to talk about today are TNBC which is the abbreviated name that we give triple negative breast cancer, what it is and the risks that it poses and the ways that it makes it hard to live with this diagnosis… and talk a little bit about some of the lifestyle references that Marquita made about her decisions to change her diet and stress, levels as a way of treating potential recurrence... talk a little bit about our relationships with our oncologist because Marquita found such a wonderful one and yet she only had him for a few years. And then I’m going to talk a little bit about testing and I'm just going to show you some resources in the show notes about testing, because that could be a real rabbit hole that I don't want to go down because I'm not the expert. But the testing options, especially genomic testing, is becoming much more available, much more affordable, and there are so many elements that you can pursue in this area. It's kind of exciting.

So let's start with talking about triple negative and what makes it unique. Because I think that this is really important to know the really basic stuff. So triple negative is referring to the three markers. The first two are hormone status, hormone receptor status, progesterone and estrogen. Estrogen being the key treatable one at this point in time. And then the third marker is referring to something called HER2, which is a protein, which also is at the cellular level. It's sitting on the cell, and it's a growth factor as well. I'm not going to go into growth factors. It's a real area of interest of mine, so it's hard not to. But I will refer you to my favorite kind of biology of cancer user handbook for patients, which is a cancer, not a breast cancer book, but it's brief—it's only 300 pages long and it's made for a patient to understand. It's made for an educated patient to understand. So, you know, if you've had some college science, you'll be able to understand it. Really, really important book, I think, for most cancer survivors to just look at your disease and understand it well and look at what you might be looking into more in the future if it comes back… And that is the book called Cancer Code by Jason Fung. Dr. Jason Fung just came out in 2020. It's very up to date. All very recent evidence, um, he shares a lot of scientific information, very much backed by science. It is not a hippy dippy, alternative book in any sense of the word. Although, Dr. Jason Fung is respected by integrative doctors as well as regular medical doctors. So he's right there in the middle of that integrative bridge or connection, which I love. So yeah, get that book if you're interested in the chapter on growth factors, because I think it's a really interesting thing to know about and we'll talk about it more in the podcast, I'm sure.

But that HER2 factor, that HER2 marker is the third part of that trio that makes up triple negative. And the reason triple negative is so remarkable and it is talked about with kind of drama and hushed tones is that it is a little more rare. It is only 15 percent of breast cancer survivors that have triple negative. Very much—pretty much exactly the same amount as lobular patients—although only one percent of triple negative patients are Lobular patients. So they are mostly Ductal patients. You know, almost all of them are Ductal, in, in terms of the type of cancer.

And as Marquita referred to, it is true that triple negative is a multifaceted disease. It is a subtype of breast cancer and it has its own subtypes. So, not every breast cancer survivor who is triple negative is going to have the same things true about their cancer. So, it is easy to make things black and white and categorize. And that is where we get in trouble with triple negative because not all of them are the same. Some of them are very aggressive. Some of them are not aggressive at all. Some of them are very treatable with chemo, as Marquita was saying, and, you know, a small minority of them are not as treatable with chemo. So it is a lot of gray area.

It is not as scary as it is made out to be, especially in the early stages. As you can see by Marquita's testimony in her life, she has not been oppressed by this disease since her diagnosis. with it 12 years ago, because she had a non aggressive type and it was very early stage when she caught it. So she is among some of the, the most successful stories that you'll hear about TNBC.

But another part of a successful story you'll hear about TNBC is that nowadays we treat it with adjuvant chemotherapy. So the clinicians will discuss taking chemo before having any kind of surgery, whether it's lumpectomy or mastectomy. And that wasn't always the case—probably not when Marquita was diagnosed 12 years ago.

And because of that, we've been able to see evidence that chemo really does work very well with most TNBC patients. In fact, many of them get a pathological complete response, which means the chemo made their tumor disappear before they even got surgery. And when you wait to have surgery after chemo, you could see how effective the chemo was very, very well because you get to see the area of the breast tissue that the tumor used to live in and you can look at it under a microscope and see just how gone that cancer is. And TNBC is one of the cancers—the breast cancer types—that does respond really well in most cases to chemotherapy. And that's why it was so stunning to me to hear Marquita's story that she had declined chemo. When you hear her tell her story, if you haven't heard it yet, you'll understand that it does make sense because like I said, hers was non aggressive and it was very early stage. It was very small. It was the size of an M& M, a small M& M, not a peanut M& M! So she had a lot of reasons to take that risk and to be that guinea pig for the rest of us to see that it is possible for a TNBC client to live 12 years without any chemo, which I think is just a really remarkable story. And she did it with the blessing of her oncologist, by the way.

So talking a little bit about the side effects of chemo, I think this is a topic that gets very overlooked and I'm so glad that Marquita brings it up. It is a very controversial. and very emotional topic. None of us want to take chemo. Many of us have to. There's just no choice. Two out of three of her doctors, well, three out of three of her doctors did recommend chemo and only one out of the three doctors, medical oncologists that she spoke to was willing to take her no for an answer and actually partnered with her in that decision making process, which I just think was the most beautiful part of her story.

He was not afraid of her not taking chemo. In fact, he could see the value of her regret matrix. He presented her with a regret matrix, which I just loved, loved that part of her story. And that allowed her to make her decision with firmness and conviction and him to support her in that. And the reality is that chemo is not without costs. It has a lot of side effects. You know, just that the trauma of having poisoned yourself voluntarily, that takes a lot of recovery psychologically. And also the fact that you get a lot of support through chemo because you're going in and you're seeing clinicians, nurses, support people every day in some cases, every week in other cases. And then that support system drops off and that's traumatic too. So there's a lot of psychological issues with chemo and we'll talk more about that in the future, but I just want to be able to talk freely about some of these things that we take for granted about chemo that—especially with triple negative—it's always assumed to be a good idea to take chemo.

And the science says that it isn't always necessary. And I'm just so excited that Marquita's written that down in her book. And people are reading that story because that part of the gray area needs to be shown light on a little bit more than it is.

So talking a little bit about some of the lifestyle stuff that came up with Marquita: I'm a nutritionist. I became a nutritionist after my first two cancer scares. I had polyps in my uterus. I had, you know, a shadow in my left breast ten years ago or more maybe 11 now and I became a nutritionist because I thought, like many patients do, that nutrition is one of the things that can save you from cancer. Now in hindsight, I see that it is one of the lesser things—it's definitely a factor for sure—but I think that exercise is much stronger in terms of evidence—scientific evidence—to prevent and keep cancer at bay once you've had it.

So, nutrition is, is a messy thing, even though I do guide people through their own particular nutrition plans on a weekly basis. I get a little bit scared when I hear patients saying that their doctor recommended a vegan or low fat diet. I just want to clarify that that is not scientifically proven and I, as a nutritionist who's recovering from cancer, do not have a low fat diet at all, and I do not have a vegan diet, especially because of my age. I'm entering menopause. People who are entering menopause, they need protein big time, and you can't get protein very well from non animal sources. So we do need to be careful about the quality of our protein. I will give that caveat.

But then we talked about stress, and this is an area where Marquita and I do agree, and her doctor and I do agree. I think stress is becoming more and more scientifically validated as a huge, huge factor in the risk of any kind of cancer. Because, we have seen scientifically that stress, chronic stress especially, creates inflammation in the body and inflammation is a habitat where cancer thrives.

So, stress, yes, probably a little bit more plausible as, something to work on, something to change your stress management. Just your busyness, just frantic-ness. As women especially, we tend to get pretty frantic, especially in certain times of our lives when we're caring for either children or elders.

So yeah, I've worked a ton on that myself and I think it's made a huge difference. So that's my little lifestyle commentary. There will be much more. I love to talk about population based studies, and I will talk about one thing with triple negative on that level.

I forgot to say a couple of things about triple negative that It hits some vulnerable populations the most. It hits African American and Hispanic communities or Latina communities the most, unfortunately, which are under-served by medical systems generally already. Also it is very common that it strikes younger women. And, so, younger women are more vulnerable because they have, you know, longer to live with this cancer once they're hit with it the first time. And then, thirdly, it is mostly coming toward women who have the BRCA mutation. So the mutation in their genetics that makes them less strong. BRCA is a strengthening gene. It is giving you more ammunition against cancer. So when you have a BRCA mutation, it is taking away from that strength. So BRCA is not a bad thing, but people with the mutation have a weakness. People with the BRCA mutation generally get triple negative breast cancer a little more often. Which can be a, a hopeful thing in the end because we've discovered a couple of drugs that can treat triple negative patients. Now that we know about BRCA, we can treat them with a BRCA therapy. So PARP inhibitors is the one main way that that happens. And then there's a new drug that can actually be given to triple negative patients when they have aggressive types of cancer. And that's called Keytruda. It does have a lot of side effects. It is a very new drug. It is something we're still learning about.

But the lifestyle factor I wanted to talk about with regard to triple negative or TNBC patients is an environmental toxin called formaldehyde. There has been one really compelling population study. When I say population study, it means it's not a super conclusive or causal-proof kind of a study, but it does show that it's likely that, formaldehyde is a factor in a lot of triple negative patients.

So a lot of them were probably exposed during the seventies and eighties when formaldehyde was used in building supplies. And that's with a couple of studies. main one was in Taiwan. So also could be a combination of formaldehyde and other toxins. People in Taiwan eat a lot of rice and rice can have a lot of metalo-estrogens. So, it could be a kind of a stacking of effects of environmental toxins in that case. But I thought that was interesting and I thought I would share that.

Marquita and I talked about tests and breast cancer tests and the main one that we were referring to were, were, uh, a kind of test called genomic tests. And these are genetic tests, but they are different than the kind of genetic testing that we do as a breast cancer patient to find out if we have BRCA, for example.

So genetic testing is looking at the genes that you've inherited from your parents and the genes that you carry all your life in all your cells. They're like a blueprint that you carry around and your cells just replicate that genetic pattern. Genomic testing is something that you're looking at in a particular part of your body, or in this case, a tumor that has been growing in your body.

And genomic testing is a little more complex because the characteristics of your tumor in terms of the mutations and the genes can change. And so genomic testing is a little bit harder to get right, and the science is still being developed for it. It's not perfect with breast cancer.

But there are some tools that we can viably use now, and I think that they show a lot of promise and I'm excited to tell people about them. The one that Marquita and I talked about specifically was Signatera, and that is one that requires a large enough tumor sample that you can kind of study the genes in your tumor.

I myself did not have a large enough tumor sample to do Signatera, and I was heartbroken to find that out because I really wanted to be that guinea pig. Marquita and I talked about some of the tricky parts of testing, especially genomic testing, which allow you to find out a little more about your tumor and the cells in your blood that are floating around and then getting killed by your immune system, which are called circulating tumor cells. Finding out a little bit too much... it can be anxiety producing.

And most patients probably, if they were fully educated about these tests, would choose not to, to get the test run because they can be really worrying. You can find out that you've got a high level of tumor count one day in your blood, and maybe the next day it would be low, and so you got worried for nothing. And after all, the immune system is blasting those little cells out of your bloodstream anyway, so they're not really that threatening. So it takes a lot of education to get a patient well informed enough to really appreciate what some of these tests will provide. And for that reason, they are usually only run on later stage or metastatic patients, and they're very useful in that case. They can really inform the choice of therapies, the drugs that you use to eradicate those later stage cancers, or at least tame them and get them down. So, for an early stage patient like myself or Marquita to take a Signatera test is a little different because we're not dealing with active, invasive, or threatening cancer.

Our surgery got that taken care of. So we don't really need to be monitoring but some of us want to, and since Signatera is a test that has been shown to be viable and reliable, and clinicians really respect it, it's kind of tempting to find out what's going on in there. And so Marquita and I both are, are kind of on that edge, and I think she's deciding whether she's going to take it. Maybe I'll have her back to talk about whether she did take the test.

Tumor markers are the other test that she and I talked about. I asked her if she was getting tumor markers run and she said no. And I am because I've insisted on it and that's because I saw how high my mom's tumor markers were right before she died of metastatic breast cancer. And I was pretty mad that nobody had run those tumor markers in the last couple of years to see that she was getting metastatic breast cancer. So that's kind of my, my reasoning for insisting on getting tumor markers. It's the same thing—it can provide a lot of anxiety unnecessarily if they are getting a little high, but they're not super high, what do you do? There's nothing you can do, like Marquita was saying.

So I still want that information because my mom didn't get it and she could have known sooner that she was dying if she had gotten it. And so I'm a little bit biased in favor of tumor markers. I also have seen that because I have Lobular, or I did have Lobular cancer, I've seen Lobular patients talk about having no indication that their Lobular cancer was coming back until they got a tumor marker panel run, because Lobular cancer is impossible to see in most scanning machines and modalities.

So it's a little bit different for us Lobular patients-- maybe we could benefit a little more from tumor markers. Again, these are things you want to ask your own clinician about. You probably won't find the first few clinicians that you talk to are willing to run Signatera because they just don't want to produce that anxiety for their clients. But I did find one, and I think there are two in Portland that have been running Signatera for their clients very willingly. So it's just kind of a personality requirement. I think they have to put themselves in our shoes and if they would want that anxiety—because they're that inquisitive. It tends to be the scientists, the researchers that are that inquisitive, and so that would be the first place that I would go if you're interested in Signatera. And for different insurance companies, you may not have it covered because it is a pretty new test. But tumor markers are cheap and they're usually covered.

I'm going to leave a list of other tests below because there are so many now and I have a really good talk from the Lobular Breast Cancer Alliance that there are two different researchers that are talking about some of the tests that they use. Again, it's mostly for later stage cancers, very, very useful for stage four.

And that's how I want to end this podcast discussion, talking about just how similar Marquita and I are in the end, even though I had Lobular, she had Ductal, I had triple positive—I had HER2 low, so it's kind of triple positive—and she had triple negative. So you'd think on first glance that she and I were the opposites, we’re so different.

But what really makes the difference is how large your tumor is and how fast growing it is and whether or not it was eradicated in surgery. And that's really the main thing that makes us similar. And that's what puts us on this, such a similar path. Yes, we had different types of breast cancer with different markers but until you reach stage four, triple negative is not as scary as you might think, because usually we get it with the chemo and certainly with the surgery, if not with the chemo, and usually women live nice long lives after that, especially when they've had the adjuvant chemotherapy that works really well.

And so after your first, your stage one occurrence, if you don't have a recurrence in the first five years, then you can really kind of rest easy, and it's just when you hit those later stages and you really need the drugs to treat this type of cancer that it becomes like less of a menu to choose from in terms of the drugs. There are still a menu of drugs. There's still chemos. There's that Keytruda. There's the PARP inhibitors for BRCA, but it's less.

And so a triple negative patient is only different from a triple positive patient in those later stages of cancer. And that's another thing you just don't hear or see. We really have so much more in common across the board than we often acknowledge in our conversations and in our culture. And so I just, I kind of wanted to shine some light on that and the fact that both Marquita and I were very safe not doing chemo.

She didn't have the option to do any Aromatase (inhibitors) or Tamoxifen because her cancer wouldn't have responded to that, but I didn't get offered those either because my cancer was so tame because it was so small and early stage. But at a later stage, if both Marquita and I were to recur, we would look very different in terms of the drugs that we would take or be offered. And that's what makes triple negative more essentially different or foreign from the 85% of us that have somewhat positivity in those three markers. We'll have many, many more markers. It's not just always going to be three markers. Things are adapting and changing and always developing in cancer research.

And so these three markers are not the only ones that are going to land on the scene. Already, there are many more that are kind of minor factors. So TNBC is not the extent of what makes us different either or the same. The more advanced our tumors become, the longer they live, the more mutated they become and more different we are—in the makeup of our tumors, too—so it is a lot of gray area and not very much black and white. But that's okay because that makes us more relatable to each other and supportable to each other. And that's what I love. I love to learn how we can relate. There aren't that many walls up between us after all.

So next week I'm going to be interviewing April Stearns from Wildfire Magazine, a huge, huge, inspiration to me and the thing that really got me through the roughest time after breast cancer diagnosis and surgery when I was pretty isolated. So can't wait to talk to April about her story, and I will talk to you then.

This episode gets into some murky medical territory so it's important to note that your doctor is the only expert on whether chemo is for you. Personalized cancer treatment is still being tested in clinical trials at this time, but Marquita is one example among triple negative (TNBC) early stage breast cancer patients who might have taken chemo and is still apparently cancer free 12 years later and has no regrets. Being an early stage survivor means that her choice to decline chemo was a less risky one than it would be for a later stage patient, but she has a lot to say about possible regrets with chemo in the context of TNBC.

This episode covers:

Marquita's initial diagnosis of stage one TNBC and her discovery that TNBC has subtypes

Marquita's family history of TNBC and experience with family and friends who had it

Marquita's discovery of Robin Roberts' post-chemo diagnosis with MDS

Marquita's oncologist search, and a "regret matrix"

Marquita's lifestyle efforts to avoid recurrence

Marquita's book, Orange is the New Black

Marquita's advocacy on behalf of the Metastatic Breast Cancer Access to Care Act

For more about the new era of personalized medicine, here are some great YouTube videos to check out:

https://youtu.be/vn1AHrCfrAE?si=qr1-cv5kGN7SmW4l Brief and simple summary of genomic testing

https://youtu.be/QS-1HZr-trg?si=xMr99Jg7DijLQrDf A new trial in Australia testing a less chemo and radiation heavy approach in breast cancer patients

https://youtu.be/lxDuw4qQ6iA?si=chx1-BS1GII1P7_2 Dana Farber’s Genomic Testing Program

https://youtu.be/It1DQkNbofg?si=Pjl8TCCMVTcPCHtd Metastatic Breast Cancer and Personalized Med

Today I'm reflecting on how far I've come since my first mastectomy--the one in which I was denied flatness. Thanks for listening as I process my own anger and regret and allow them to officially become softer. 

Transcript:

Welcome back.  Today in episode three of the podcast, I just want to reflect a little bit on some of the themes that came out in episode two, where I interviewed my guest, Michaela Raes, the founder of Breast Cancer Confidence.  Her project is based in imagery and photography, and it is all about confidence and body image after mastectomy and lumpectomy. And if you didn't catch that episode, be sure and listen to it after you listen to this one. I just want to talk about some of the main themes in my own journey, being around body reclamation and self image and body acceptance after my own botched mastectomy.

Last November I made a YouTube video about the idea of flat denial. There's hundreds of women that ask to go flat after a mastectomy and are not granted that wish by their surgeon for many reasons--either the surgeon is in denial themselves about the ability of a woman to not want breasts or they're just not listening or they care more about their ability to express themselves in their "art" of reconstruction than they do about the woman and her ideas of what she might want. 

And of course, I was very upset. I was very angry for many months--well over a year--probably a year and a half after my first mastectomy, wherein my surgeon denied me the flatness that I asked for and the smoothness that I asked for.  But I've started to stop being angry now and talking to Michaela last week was really helpful in seeing the progress that I've made.

Also looking at the pictures that I had taken with her and Jolana here in the Portland area with some of my flat friends--I've got those pictures set as my screensaver on my computer now, and I've been looking at them a lot over the last few weeks and realizing that, you know, having a bunch of ladies with their shirts off and having no breasts and our arms around each other and being joyful together and celebrating our bodies is not something that most people would take naturally or lightly or, you know, most people would have to kind of think twice or think a long time to kind of process how that's even possible. I know I would have before I went through it. 

I think I have a lot more compassion now toward my surgeon,  who not only denied me my flatness once, but actually twice. On my revision, which was a month after the mastectomy, I had margins that needed to be cleared. And I asked her again to take out  the extra skin and the wrinkles, in my skin and make it flat and she seemed to be listening to me, but  she again left a lump very intentionally wanting to make that into a nipple. I thought back in November when I made that YouTube video that I would be at some point sending a letter to my insurance company and asking them to defund her or demand the money that she was paid  to be paid back to them because  she was not granting me the informed consent or any kind of consent over my process and my body.

And I was really upset about that. And now I'm so much more understanding and  patient, I guess, with the process that this, this work, this activism that I'm doing needs to take time and allow for some movement and growth in other people's lives. Certainly in the surgeons that are trained to do aesthetic plastic surgery are trained to make breasts better overall, instead of taking them away.

Of course there's a lot of change that needs to happen in this area and so I, I kind of think myself, would I rather get that surgeon's attention by complaining and threatening to remove money, which probably wouldn't happen in the end, especially with all this time that's passed--it's been a year and three quarters since the surgery. Or would I rather be able to strengthen myself and come out of my anger and into a place of compassion and write her a letter myself with an openness of heart and  vulnerability and honesty and express to her how important it is for people like me to be heard by her in the future. 

I don't know that I would ever expect a reply from her, but I kind of think that might get her attention in a more effective way than making threats or filing complaints would.  And so now I'm kind of thinking that that's where I'm going to land in this process of reclamation of my body.  I have reclaimed my body from that spirit of theft, of, you know, just ignoring what I had to say, which is a huge injury in itself for a medical professional, but  I'd like to go further and really affect change for her and for other surgeons like her by continuing to tell my story and talking to Michaela I think really helped me to do that. There was a point in the interview with Michaela where she said, you know, you might lose the choice that you thought you had.

And that's definitely something that happened to me. I thought going into that first mastectomy that I was going to have a Goldilocks procedure, which would leave me with a small, tiny little mound.  And then I told that surgeon that if I couldn't for some reason  have that procedure that I wanted to be as flat and smooth as possible.

I didn't know the term aesthetic flat closure at that time. It was too early in my research on these kinds of things. I didn't discover that term until later. And that's a huge regret for me.  It's not something I could have controlled probably, but I do wish that I had more time to look into that. I was more concerned about the cancer than I was the closure and spending all of my free time researching the cancer itself because that was more important.

So, I can't do anything about the regret of not learning about aesthetic flat closure. And I imagine that's probably not top on most women's minds. And that's why it's so important that we educate surgeons about this new preference. I think women historically had a preference to go flat because they just wanted to be done with it and not bother with extra surgeries. 

These days, I think the assumption is by most surgeons that women are going to want implants because they're paid for by insurance now, and they're easily done in a matter of hours and  it makes them a lot of money. So it's kind of the obvious choice from a surgeon's perspective, but  a lot of younger women especially nowadays just really want their health to be the priority and they don't want to bother with extra long surgeries and surgeries every 10 years to replace implants. 

So this isn't going away. This is a preference that is going to be here  and I just have to wonder what the best way to educate surgeons would be, considering that they have all the power and don't really need to listen to us once they've done surgery on us. How can we go back to them and teach them in a way that they'll understand and listen? 

And how can we vote with our dollars and go and support surgeons that have listened to other women?  These are questions that definitely aren't resolved for me. But they are a little bit more tangible and a little bit more within reach because my anger has slowly been diffusing over the last few months and I just... I'm so grateful that I got to have a chance to talk to Michaela and see that about myself. 

And so I'm just wondering if anyone else out there is having these kinds of thoughts. Did you have a really icky experience with your surgeon? And are you afraid to go back and talk to them about that and educate them so that they're better informed for women that they serve in the future, assuming that they do want to be better--that they are not necessarily  ego maniacs or narcissists, which I'm sure some surgeons are, but we don't want to assume that they are. I certainly don't. I would rather assume that they want to learn, but it takes a lot of courage to write those letters and speak those words. Because the fear is that you won't be heard again. At least that's a fear for me. So this is just me writing in my diary asking for accountability around this.

It's a process and it's definitely not at its end yet. But I wanted to share just some of my thoughts after talking to Michaela.  It is a mystery to me still how much I can love and accept my body and that I actually appreciate it more than I did when it was fully whole, still breasted, still that kind of stereotypical woman shape. But I really appreciate it for what it's brought me through, even though I think that some of the photos that I post on Instagram of it, are pretty repulsive to other women  and certainly to most men who can't even put themselves in my shoes. I understand that and I accept that, but I do still want to push that envelope and challenge--not necessarily the average woman, but challenge the average breast cancer survivor to think about the beauty of this option and the option to advocate for every possible choice  after mastectomy, not just implants, as Michaela was saying in the interview last week.  

So that's all I've got for today, and I hope that you'll stay tuned for my next interview, which is coming up on Sunday with my friend Marquita talking about some unexpected changes in her treatment plan that happened 12 years ago when she was diagnosed with triple negative breast cancer. 

I'll talk to you then. 

Whether you're flat or reconstructed, if you've had a mastectomy you have scars on your chest, and the natural tendency for most of us is to hide them. What happens when we encounter someone who isn't as interested in hiding? For me, it's been magic each time a person shows a lack of shame to those around her, and that's all Michaela is doing with her nonprofit, The Breast Cancer Confidence Project, starting with herself. This is one episode you'll want to watch on youtube because the photos Michaela shared with me tell her story best. Listen in to hear Michaela's story of the transition from fear to confidence in her post-mastectomy story of healing through photography. Find full show notes at www.abreastcancerdiary.com by going to this link. Breast Cancer Confidence can be found most easily on facebook and instagram by the same name. Stay tuned there to hear more about the upcoming photo book, You Are Whole, to be published later this year. 

Episode Transcript:

K:

Hey, everybody, this is Kathleen Moss and you're listening to a breast cancer diary. Today's guest is Michaela Raes president and co founder of Breast Cancer Confidence Project. She lives in the Finger Lakes region of New York, and she was one of the first women that I considered a role model to myself in the area of body positivity, uh, she did this by showing up on Instagram and sharing photographs of her body as it was changing after mastectomy.

And this was before I had ever found a community of my own, or an example of sharing this in real life, sharing one's body after breast cancer. And so she made a profound impression on me. And then after that, after seeing those pictures, I learned that she was doing this for other women in the world and spreading the message of body positivity after mastectomy through the Breast Cancer Confidence Project.

And just about a month ago, I got to meet Michaela in person. She traveled all the way to the West Coast here in Portland, where I live, and she did a photo shoot with her co founder. Jolana, and I met both of them and it was just such an honor to experience their project in person. So, today, I just want to ask Michaela some personal questions about her breast cancer journey and what brought her to this work of body positivity and in the realm of specifically of photography.

So Michaela you shared these photos of yourself, these really stark, but also very beautiful and tastefully done photos of yourself in studio, studio quality photos, um, with the world and showed the different phases of your reconstruction just so beautifully. What inspired you to start this work with your own body and, and to do this for the rest of us?

M:

Well, first of all, I want to say, thank you for having me here. It was great meeting you last month as well. So it's really an honor to be here and discussing this with you. I would say really what led me to want to start this whole process was my. my internal struggles that I had with my body image being diagnosed at the age of 28.

I was very young. I was recently divorced. I was newly single. And I was already feeling insecure about myself and my body. And then you get this completely unexpected news that you have breast cancer. And that just. totally rocks everything that you thought you knew about your body, right?

And so then that also brought up a lot of questions for me at the time. What will my body look like? Will I ever feel comfortable in my body? Will I ever feel confident and sexy in my body? Well, will I ever feel comfortable around a man in my body after all of this? And then there was a lot of fear and a lot of panic.

And I feel like a lot of what I found out there, I guess, didn't. Didn't really provide me that reassurance. All of the images that I would see looking on Google online, you know, at doctor's offices, it was just this very cold clinical representation of these are your options of what you'll look like.

And you're being faced with all of these different, you know, choices that you have to make too these surgeries that you have to choose from these very extreme decisions. And you have no clue what any of that really means or what you would feel like with that. And then all you see is people that just are, are standing there and not looking very comfortable because it's this stiff standing against a wall for your doctor's office.

So it was just really difficult for me to be going through that emotionally. On top of everything else too, right? As if we don't have enough things that we're dealing with to then have that on top of it. So after all of that, I am going through treatment and I start to realize that all of these things that I'm afraid of, all of these things that I thought were going to change the way that I felt about myself, about my body--I was still okay. And in fact, I was able to, you know, look at myself fighting through all of this and, and really see that my body was strong and it was, it was helping, you know, fight to fight this disease, right. And. I guess I, I was able to recognize that all of these things that I was afraid of did not need to scare me the way that they did.

So I wanted to share that story with the world. Really, I just wanted to be able to show other women that they don't have to have that fear. And I felt like I had a really unique. opportunity in a way with the, just the way that my surgeries fell. It started off with, you know, planning to have to choose just one surgery timing wise, I had to go through a lumpectomy and then I had to go through all of my chemotherapy. And then I had to have my double mastectomy. I had delayed reconstruction. So I went through. pretty much all of these different phases that you could possibly fathom and to be able to show to somebody else who might be faced with similar dramatic decisions like that. That, at baseline, really was what I think I needed to give me that kickstart in my confidence to feel okay. And then to be going through treatment, like I said, I just see myself in this different way after rebuilding that confidence a little bit right before my first surgery was when we did my first photo shoot.

K:

So whose idea was it to sit down and take a photo at that early stage? Like, was it jolana's idea or was it your idea? Like, what made you think to do that?

M:

So I guess, at the time of my diagnosis, when I was faced with all of these insecurities about my body, I felt like I wanted to memorialize my body as I always had been, as I had always known I wanted to just have something to be able to remember what I looked like before everything changed. 

So that was really where it all started--I was just looking to have that first photo shoot and not really have anything beyond that. Again, I was afraid that I was not going to feel comfortable in my body that I was not going to feel confident ever again. So having that first photo shoot was just a way to show who I had been and then as I went through treatment.

Everything just seemed to be not as terrifying as I thought it would be at first. Losing my hair wasn't this big deal. I was able to find ways to find silver linings through all of that. And I think that's really what also helped me to build up my confidence and feel comfortable. As I'm going through treatment, to want to go through more boudoir shoots, to then be able to capture what it looked like in every single stage of what I went through.

K:

At what point did you feel ready to share those with the world? Did it take you a while?

M:

It did take me quite a while, actually. After I think my It was after my mastectomy. To be honest with you, I think I was still under the influence of anesthesia when I really just decided I had the guts to just go ahead and put it all out there.

So I think that gave me the little boost that I needed to really be able to put this out there. And. I'm, I'm glad that, that I did because it's been really, it's been really rewarding to see all of these different women like yourself who have really been impacted by this work and who have felt inspired and have felt empowered to, to love their bodies even through all of this.

K:

Yeah. What struck me was that I still have never seen anyone share. the expanders, like you shared the stage of your story where you still had expanders in, and I've heard them described and I've heard people talk about what they feel like, but I've never seen a body with expanders in and you know, breasts with expanders in that are uncovered.

And. I think just the power and the connection probably between you and Jolana, it was so powerful because you have zero shame. You have zero self consciousness in those photos. You are truly self loving in your spirit. And that was powerful. Like just the combination of having that kind of raw representation of what was going on, but also the countenance that you had.

And wow, it was, it was amazing. I'm sorry that this is an audio program because I'd love to be able to share. At the end of the YouTube version of this this podcast episode, we will definitely share these photos so that people can see them, but talk a little bit about how this morphed from just you sharing your body with the world into a project where you're inviting other women in to this invitation to share their bodies with the world.

Well, I mean, really it, It was rewarding to be able to share my own experience and my own story, but I, that's not relatable to every woman that is out there either. My, my experience and my body is not every body that has been through this.

Even beyond that inspiration part, I really wanted to be able to give those women that same experience that I did of having that opportunity to have a confidence boost for themselves as well, and to really learn to fall in love with their bodies again. Jolana is just fantastic. I can't imagine a better person to be working on this project and this organization with, she's just so encouraging and she really knows how to just cheer you on every step of the way and coaches you through it and makes you feel so comfortable. And I think that just the way that she approaches giving women this empowering experience is just a whole other part of what we've been able to offer by sharing this work with the rest of the world and traveling and visiting other survivors like yourself.

K:

So great. Yeah. And so rare. I think I personally was inspired by you and a couple of others that I discovered on Instagram to go and hire my own Boudoir photographer after my first mastectomy. I asked her to do this incredibly personal thing and do this project with me when she had never done anything like it before. She'd only photographed breasted, you know, whole women that had not been scarred in this area. And I was asking her a lot, I realize now! And I've been back to her because we did build a rapport in that. 

But that is a huge piece of it--just Jolana's comfort and her confidence in your beauty. So that's such a gift. And I know you guys share these photos both on Instagram and Facebook, right?

M:

Right. Yes.

K:

So, and you've come to a place where you've started--a couple of years ago--started asking women to share their stories along with photos in a kind of short, brief, short form way.

Can you talk a little bit about your latest project you're working on an actual book like a physical publication now for the first time. And what is that going to look like? How are you going to marry it, it sounds like it's going to be photographs taken by Jolana only where the ones on Facebook and Instagram are like mine was taken by my own local boudoir photographer, but the book is going to be just Jolana's photography of women post mastectomy or post Lumpectomy also?

M:

also?

Post lumpectomy... post mastectomy... post reconstruction... flat, without choosing reconstruction.... we're really looking to be able to show all of those different options that can be chosen. Because again, there's really, there's not a lot of information that is out there that is really encouraging or really shows you that you're going to. love your body after all of this, when you first get this diagnosis.

So we just find it really empowering to be able to share all of these different stories from different women to remind survivors that you are whole after all of this, no matter what you choose. You are still beautiful. You're still yourself. You're still whole, and you can still feel comfortable regardless of which of these options that you choose.

K:

And that's the name of the book, right? You are whole? Is that the planned title? 

M:

Yes. You are Whole is the name of the book.

K:

So how will you ask the women in the book to share their stories. Is it going to be a longer form, a page and a half or two page story, or is it still going to be kind of a brief short-form one, like it is in your Facebook posts and your Instagram posts?

M:

So we're asking for kind of free form, for women to share their stories about their confidence journeys and how they've learned to accept these changes that they've been through, what they've experienced along the way, what challenges they've run into and really how they've grown from all of this.

Then we're using those words to help other women learn to, to recognize that this is not the terrifying thing that you think it's going to be when you first hear that diagnosis.

K:

So your intended audience is for women that are kind of just getting a diagnosis and, and facing this.

M:

That again was, was my experience. It's something I felt from the beginning, but also we want to help women who are in any stage of their journey. So if they're also still. Struggling with with their own confidence after what they've been through you know, there's, there's not a lot of representation out there in the media or things that, we see that really reinforces that there are women that look like us and they can still feel this way about their bodies. They can still want to love their bodies in this way. They can still look awesome like this. I think that's really the whole goal, is to be able to help anybody. Whether they're still going through it and when they have those decisions to make, or whether those decisions have already been made, and maybe we're just trying to make peace with, you know.

K:

I want to end with just a really personal question that I'm asking all of my guests and hopefully you have an answer for it. Hopefully it's not too personal and that is do you have any regrets? Or do you have anything that you really wish you would have known going into this experience that you didn't know, but you know now and you'd like to share with other women.

M:

The main thing that I wish I would have known early on is that all of, all of these insecurities that I faced at the beginning, these, these fears that were piled on top of the fears that we talked about in the beginning, you know, the, how am I going to feel about my body on top of "is this body going to live?" period. You know, there was no need to be adding that onto what's already a very scary situation. So I think, I wish I would have learned, you know, sooner that maybe that wasn't something that I needed to be afraid of, you know. In hindsight, there's probably a lot of different reasons why I had that experience, but at the end of the day it was pain that didn't really need to be had. It was mostly a, a fear that I had being 28, having my diagnosis and not knowing what my life is going to look like. Right. So it's not only a fear of, of how am I going to feel about my body? It's, it's a fear of: how are potential partners going to feel about my body too.

Seeing the pictures that you would see at the doctor's office, it's just not people feeling that comfortable. So it's just this stiff torso is all you see, and then I feel like that also makes it really hard to choose anything but the thing that looks what we are most accustomed to which is some form of reconstruction... and I feel like that's a disservice as well. Because. there are so many complications that can be had with reconstruction as well.

I think that there needs to be more out there that shows women that all of this can still look beautiful and natural and still, still feel comfortable and still feel like yourself.

I was offered flat as an option. I feel like for me at the stage that I was at in my life, where I was at in my confidence, I didn't feel like, you know, I had any other choice. And I felt like if, I'm going to have to go through all of this, at least get me some boobs out of it. So I mean, it was, I guess, a lame consolation prize.

It felt like, but I mean, no, really in all seriousness it felt like kind of a, a given decision. Like it didn't feel like there was any other decision. You asked what, is something that I wish I knew to begin with. I do wish that, that I had known this because you know, there, there are times that I'm just like, man, these things are so heavy. Like, why did I do this? And then there's you know, different little quirks about having silicone implants that are just, not the most fun thing either.

So, you know, maybe I might've chosen something else. If I had known that I wouldn't necessarily need this to feel comfortable in my skin. Who knows?

Thanks for checking out my new podcast! This episode is a super short intro to my story just in case you haven't heard it before. Thanks for listening!  -Kathleen 

Episode One Transcript:

[00:00:00]  June 26, 2024. Dear diary, Wait.... Are you my diary? My name is Kathleen Moss. Welcome to my podcast. You may know me from my YouTube channels, "Etrogen Diaries"; and "Seeking Deeper Health"; or maybe you found me through my Instagram account, @a.breast.cancer.diary. However you got here. I'm glad you made it. This podcast called "A Breast Cancer Diary"; is a new project that I'm hoping will last for many years. It's not going to be polished, professional, or even an entertaining podcast. Because to be honest, for me, recovering from breast cancer is mostly about finding ordinary people who can help me feel less crazy as I continue to make sense of what just happened to me and my mom.

That's all I'm here to do, to help you feel less alone--less crazy for all the things that you've been worrying about. So at least for the first season, instead of inviting experts on, I'm inviting my friends and fellow advocates from the breast cancer community, who have unique experiences and can tell personal stories in their own informal language, without shame.

This first season is really about our intuitive moments, moments when we surprise ourselves and do something really strange, but also freeing, like leaving the career that we've been picturing ourselves staying at for 20 or 40 more years, or posting a photo of our newly reconstructed breasts on Instagram just for solidarity sake, or saying no thanks to chemo or implants when we totally had planned to go through with them up until the last moment.

This weekend will be my first anniversary of my second mastectomy on the right side and my final revision on the left. Talk about closure. I got some serious closure that day. That was a day I so looked forward to. I still can't believe how fortunate I was to have so many other breast cancer survivors supporting me that day, and week, and month.

Instead of a funeral procession for my lost breasts, we made it into a celebration of life, recovery, and wellness. and helped me so much being a part of a community that celebrates chests of all shapes and sizes and symmetries. 

This last year has probably been one of the most painful and important years of my life. My dad's dementia finally dipped to a point that made it so that we were unable to care for him. Mom's breast cancer came back and then stole her from us, leaving me with little to do with my time and my heart. I started to pour myself into the work of breast cancer advocacy and awareness, and I've met so many amazing women along the way.

I finally had the chance to get a tattoo on my concave side to cover the gnarly scars this spring. It makes me smile more readily when I look in the mirror. I'm still learning to really see myself and love my body more fully, but I already love it more fully than I did before cancer.

This last month, I interviewed two of my favorite women from the group of superstar doulas who midwived me through this last couple of years, and I'll get to share two pieces of their stories soon in the podcast. But first, I want to share a little bit about who I am.

I'm a 51 year old wife, mother, nutritionist, writer, and spiritual director who grew up in Portland, Oregon. I put myself through college, waitressing, and going to school part time for 8 years. My first romantic relationship was with a man who was a sociopath, so I didn't really date at all from age 25 to 37. His addictions weighed on me so much that I spent my first 10 years of work life working as a social worker in the foster care system, which was the place that he and his brother, another abuser of mine, got so messed up.

I was 30 when I decided to adopt an older foster child as a single parent. And I did. My daughter was 9 when I got her and 10 when I adopted her. I had a spiritual community around me that was super solid and helped me take care of her well. When I was 38, I started online dating and I met my husband, who I married a year later, and we moved out to the country, where we still live, with just one of our kids still living with us.

In my early forties, I had two cancer scares. One came through uterine polyps, and the second, a year later, showed up as a shadow on my breast ultrasound, which happened because I found a benign lump in my right breast. For eight years after that, I had ultrasounds on both my uterus and my breasts every six months. I became a nutritionist to try to influence my increased risk of cancer seven years ago, but all the removal of silver fillings, cheap meat, and processed foods from my diet could only go so far. And like so many women I've come to know, the stress of COVID is what I believe put me into the danger zone.

I didn't ever feel a lump in my cancer torn breast, but my sweet body told me that there was something wrong by sending dead cancer cells out through my nipple in bloody discharge three years ago. That's when we started all the MRIs and biopsies, which at first showed nothing, probably because of my dense breasts. But eventually, I was diagnosed with DCIS, or precancer of the duct. After my single mastectomy for DCIS almost two years ago now, I was told that I also had been harboring invasive lobular breast cancer in that breast, but not enough of it that I had to have chemo or radiation.

I only had a couple of millimeters of active cancer. I knew instinctively that implants weren't for me, so I had a plan to get a Goldilocks Mastectomy. But it turned out that my DCIS was in my skin by the time I had surgery, so I got a concave closure with a lump of extra skin that my surgeon wanted to turn into a nipple... even though I had told her that I didn't want a nipple.

At the time of my first mastectomy, I felt really lonely. I started looking for a way to get into deeper community with survivors. I found that in the Flat community here on the West Coast. They not only helped me not to feel so alone in my struggle, but I also saw how much they were celebrating their bodies, which freed me up to let go of insecurity and self consciousness, which I never thought would be possible, especially six months after mastectomy. I found them on Instagram, and that's why I've been telling my own story, or what I've called my diary, on social media. I see it as a quick way to connect with women who desperately need this kind of support in a timely way. I never thought I'd be such a big fan of social media.

Nowadays, I still do work for flat visibility, and for flat to be offered as an option after a mastectomy. But most of my advocacy work is around lobular cancer awareness, supporting a group of 50 advocates who are seeking to do local advocacy in their own communities with the help of the Lobular Breast Cancer Alliance.

I mentioned that my mom also had breast cancer and died of it recently. This happened just four months ago, and I'm still processing the loss. It was just a month between diagnosis of her lung mets and her death. I'd been living with her about half of the time for the year prior to her death, so she left a huge hole that I'm still trying to figure out how to fill.

Hopefully this new project will be a way to memorialize her, and a kind of tribute to her memory. Stay tuned for my first full length episode where I'll be interviewing one of the first women I found online who made me feel less isolated by sharing photos of her cancer torn body. Michaela Raes will be my guest on the next episode.

I'll talk to you then. 

Welcome to my new podcast. The release date for the first episode is June 30th. Subscribe now so that you can listen then! Recognize this voice? Kathleen's youtube page is called "Estrogen Diaries with Kathleen Moss" where you'll find about 75 videos that you can check out while you're waiting to hear the new podcast. 

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Transcript:

Hello friends and happy Spring. I do not have a guest today, and that might be shocking to some of you who've just started listening to this podcast because for the last five episodes I've had guests and that is really unusual. From the very beginning in season one, I always did one podcast episode with a guest and then followed it up with some commentary and reflection on what we talked about.

But for many reasons, this last month and a half has been different. And I've just done guest after guest after guest, uh, mostly because some of the guests had messages that were very time sensitive and I wanted to get their messages out. So, um. For example, Lori, who was the coach for the Dragon Boat team, uh, she wanted to tell her story because Dragon boat season has just begun, and I wanted folks to be able to learn about dragon boating in time to join them for the beginning of the season.

At least here in the northwest, the season starts after daylight savings changes. So, um, wanted to get that out. And then this last interview with Christine Handy was extremely time, time sensitive because she wanted to get all of the breast cancer survivors and flatties and. Their caregivers and loved ones into the theater on April 1st, uh, for her screening.

And at the moment that screening is sold out, she is trying to get a bigger theater. So if you've tried to get tickets recently and were turned away, you might try again in a week because they may secure a bigger theater within, uh, the man's Chinese theater. Kind of complex of theaters, so, uh, that's something you might keep trying if you really wanna join us there in person.

And I have to say that if you're watching on YouTube today, you'll notice that I look very tired, and that's been true for the weeks since I got back from Las Vegas. Those of you who have subscribed to my newsletter and followed me on Substack, uh, you will know that I had a trip to Las Vegas.

Usually lasts around five days around my husband's archery tournament there. It's a worldwide gathering of archers, huge tournament that we go to just about every year. And I think the number of anesthesias that I've been through at this point, combined with all the smoke and just general anxiety that is present for me in Las Vegas, especially when I'm staying on the strip, which we did this time, which just extremely tiring and.

Reminds me that I do have a small amount of chronic fatigue syndrome, that I do have to, uh, work to get past some of these barriers with fatigue and, and energy loss. So I'm still fighting my way out of that hole. But I'm here because I have so many things to talk to you about. Uh, first off, I want to tell everyone that I did get an ultrasound this last week and it came back clear.

So I'd been waiting , post-surgery to get my. Final ultrasound to make sure that there was not still a suspicious lymph node the way that they thought there was. In my last ultrasound, uh, I had a excisional biopsy surgery in January, so I guess it's just been two months. Anyway, I. So I had all the inflammation from surgery.

They couldn't go in into an ultrasound until that inflammation calmed down and I just had that ultrasound this last week and it came back clear indicating that it really was never a lymph node. Um, it was probably a complex cyst that ruptured sometime just before my surgery, and that's why there's no evidence of it in any of my, um, my excisional biopsy tissue.

So that's good news. I don't have to worry about having a recurrence, uh, which I was pretty sure was the case, but I just had this final step that I needed to wait for and see myself through, and very reassuringly. My radiologist did not even come into the room to talk to me this time, which never happens. That's the first time I've ever not had her come in the room to talk to me after an ultrasound. So that was very reassuring. Uh, so I just wanted to share that news off the bat.

And then I just wanted to go back and reflect on all of these lovely interviews that I've had over the last five weeks. Um, the first couple were, as I had told you, they would be, were with a couple of pretty good friends of mine, folks that I see every couple of weeks on average.

Um. Brenda is just a local super close buddy of mine that, um, has had a lot of struggles and we've grown close through her struggles. Um, and through our connection through the breast cancer journey, we both went through breast cancer right about the same time, and she had a much longer treatment plan than I did.

So she's just come out of her treatment not that long ago. And, um. Brenda is someone who, unlike a lot of folks that I. Tend to shine the spotlight on in my Instagram and other community posts, I find there are some people that are not celebrating their new body after breast cancer. You know, shockingly, of course.

No. I think the assumption is that we wouldn't be too happy with our bodies after breast cancer, but. Most of my friends are, and there are a few friends that are still coming out of the trauma of breast cancer, including Brenda, who are not so thrilled with their body. And I wanted to feature someone like that.

Um, and I wanted it to be someone I knew well, and that was true in Brenda's case. I know her well. She trusts me, I trust her, and I had her here in person in my home for that interview. And, uh, Brenda and I talked about the contrast of the two breast cancer events here locally that we both went to together, and I wanted to talk a little bit, reflect a little bit more on that and the contrast there.

So the first breast cancer walk that I ever went to was also Brenda's first one. It was in 2023 and it was at the zoo here in Portland, uh, Oregon, where near where I live. And Brenda was one person, maybe out of three or four people that I had found for that event online on Facebook, I think. And. Someone I hadn't met before that event.

And then there were at least a dozen women that I had met and gotten to know really well at the retreat that I'd gone to about six months prior. And so, but Brenda was a brand new friend that I'd been interacting with online. I hadn't met her in person. I. And she came into that event with a, a sense of exhilaration, seeing all of the energy that the dozen or so of us who were very celebratory of our bodies in that context, it kind of caught her, you know, like a virus that kind of caught on and she caught the, the energy from us.

And kind of jumped in with some, some hesitation and a little bit of timidness, but jumped into the, the party basically is what it was. It was a Susan G Komen walk, and Susan G Komen is bringing the party these days. Um, they're much less focused on walking than kind of. Jumping up and down, singing, dancing, being silly together in a lot of their events across the country.

Although, you know, in different chapters, they're a little different, uh, from one territory to the next. But here in the northwest, we tend to have a little party. When we go to Susan G Komen walks. And so Brenda jumped in with a lot of energy and we just kind of danced around a lot and had a, a friend of mine was actually up on the stage leading Zumba, and that was such a great memory.

There was probably 20. Or so of us Flatties who, um, had gathered in advance and knew that we were gonna be there. And, and I actually choreographed a little video. I was the technically the leader that time, and I did a little video that you can still find on my YouTube channel and on my Instagram. Uh, I, I brought little signs that people could hold saying positive things about their body that went along with a, a song called I Am Woman.

That's a pretty recent pop song. And so we did a little choreographed deal and video. That was really fun. But, um, then we had others that joined us who were flatties who could see us. 'cause there was such a big group of us and many of us with our shirts off and, um, some of the, the other flatties and the crowd just were attracted to that and joined us and, and we all walked together in the very short kind of span that Komen allowed for us to walk on that event.

It wasn't a 5K or anything, it was pretty short. Allowing for people with disabilities, which we really appreciated 'cause we had a number of those. So, um. In the end, we gathered together, did a little dance and celebrated with the song. And, uh, it was so much energy and there was even like a, a political figure there.

I think it was like a state representative that had spoken from the stage and some of us went and talked to her afterward. So it felt like a really significant event in my life. It was a very strong memory. Lots of photos taken there. And I share that with Brenda, who happens to be now the closest flattie to where I live.

She lives really close about five minutes away in a small college town near where I live. And uh, so we get together and reminisce about that. But the following year in 2024, Brenda and I got together at the same walk. All of our Flattie friends, the ones that are, that bring the energy, that bring the party, um, had gone to Bend for a flotilla event and were floating down the river that day.

And so I just had a bunch of new flatties that were just joining the community, one of which was Avena, who, um, I went to Burning Man with and shared that story. Earlier in the podcast, and I interviewed Avena earlier in the podcast. The, the day of our interview was the day that she invited me to go to Burning Man with her.

So Avena was there, Brenda was there, and a couple new flatties were there who also were pretty timid about their bodies. And I was tabling for the very first time at that event in 2024 at the zoo at Komen. And I felt that the energy was so different. People who had not been used to gathering with other flatties before, not certainly not used to taking their shirts off.

Brenda and I were the only ones that did that in this case, and only for a short time. I was pretty cold, but also because I was tabling, I didn't wanna scare people away by being shirtless who might wanna otherwise come up and talk to me. With my shirt on that says flat across it, which is a nice more welcoming kind of greeting, I guess to say.

Let, let's talk about being flat. And so I did talk to a lot of folks and it was much less of a party, but it was also very meaningful and productive and built a lot more bridges, I think in, in a different way, in a more conversational way, less of a kind of a spectacle making way. So I don't know, all that to say that Brenda and I have a, a very different memory between those two years and I have a different focus now.

I'm tabling now for Stand Tall AFC instead of just being there as a spectacle maker. And I feel really good about that role. I. And I'm looking for other flats out there if you're interested to train under me as someone to table at various walks across the us, especially with Komen and the American Cancer Society, 'cause we've kind of partnered with them in a way that makes it more likely that we can get tables with them.

So. There's a little call out for those of you who are interested in working with me. And then moving on to the next interview, which I had with, Danyel, who's a, a good friend here locally and is getting used to a metastatic diagnosis and also has a really powerful advocacy platform of her own locally, which is to take pictures of breast cancer survivors and other cancer survivors in her studio.

I wanted to talk about my relationship with Danyel, um, kind of in as an effect of my relationship with my mother who passed away of metastatic breast cancer. My relationship with Danyel has only grown stronger because of her metastatic diagnosis. I think because of that tender spot in my heart, uh, recovering from the loss of my mom.

I find myself, instead of being scared of, of being Danyel's friend, I'm actually drawn closer to her. And I think for most people, when you learn about someone who, who is dying, who you know, maybe as an acquaintance or as a lighter friendship, most of us will back away. Giving them space, giving ourselves space.

It's only natural to do that. But I'm really glad personally that I am not doing that with Danyel. She also lives very close to me, um, two towns over, but also in a town where I am starting to do a lot of my errands and my shopping now. So I'll check in with her when I'm in town, and I've always helped Danyel in the studio.

I've always been an eager volunteer to come and help her with other women that she's photographing. So I've played that role in, in her advocacy work, but it's been a scary season for Danyel. She has a scary diagnosis. Triple negative is not the kind of breast cancer that you want to enter into the metastatic phase with.

Um, it's, it's a, a hard time and she doesn't know whether any of these treatments are gonna work very well, and she's already exhausted One. As far as we know, she only has this one last treatment that she's on now. Um, that's, that's not even an option you know, there's always the possibility that her metastatic cancer would stop growing, which is another hopeful option that does happen for some folks. So we we're kind of watching and waiting with Danielle. She's still pretty functional. She's not too disabled by her treatment, but she does have mets to the brain, which has been really scary just in the last couple of months. And just right before my interview with her, she found out that she had a brain tumor.

So that, that has been scary 'cause it, it has affected her mobility a little bit. And so I will. Let folks know how Danyel's doing. Um, if you're interested in my Substack newsletter, which I'll talk about a little bit later in this podcast episode, but I wanted to talk about Danyel's advocacy work as a photographer and just how powerful that is and to encourage you wherever you are, whether you're a photographer or a breast cancer survivor, to do more of this work.

Um. Get into a photography studio if you haven't yet, because it is so empowering to have someone else take pictures of you and your new body and come away from that, and then look at the pictures and to see. How you feel about your new body, um, whether it's playful, whether it's bashful, whether it's powerful, forgiving of your body for changing or for needing the changes.

It's just a really transformative experience in, in my. Story and those of you who have the skills of being a photographer, um, even lightweight photography skills can be put to good use by entering this space as an advocate and taking pictures of other breast cancer survivors, um, at breast cancer walks or in a studio space or in a, just a private you maybe outdoor space.

That's beautiful. So just wanna encourage folks to experiment with that in your lives. It's been a huge. Huge influence in my own recovery, um, and my own sense of body positivity. And then my next two guests were Lori and Ellyn. Lori, uh, a really powerful leader in the Dragon Boat community. And Ellyn, a really powerful leader in the flat community at large.

Uh, someone who's on social media a lot and is well known for her book and her AI tool and her blog. Uh, I wanted to say about both of them actually. Similarly, their stories were both kind of similarly telling a tale of, um, wanting. The most powerful treatment possible, which is very unlike a lot of the gals that I interviewed in season one.

I, I just happened to interview a lot of women in season one who did not want a lot of treatment. For whatever reason, they were reticent to sign up for lots of chemo or radiation, and some of them are regretting the amount of chemo, radiation, or, uh, immunotherapy that they were offered and given and.

Some of the consequences of that. But in season two, here I am with a couple of gals that are just, they're telling their story and saying how desperately they wanted to be given the most powerful regime of chemo possible. And Lori, in Lori's case, this was like a dozen years ago or so, and, uh.

I just wanted, the one thing I wanted to say, coming away from her interview was that you can't really do that anymore. You can't go to your doctor and say, give me all the chemo, gimme everything, load it up, the most powerful chemo drugs that you have and, and have your doctor say, okay, unless.

That's what your oncotyping test prescribes for you. So nowadays we have this gift of having an oncotyping test, and it's pretty much practiced across the board. It's standard procedure now to give every breast cancer survivor after or even before. Their surgery, getting an onco typing test to say whether you need chemo or not.

And so Lori's story is a little bit outdated in that respect. I don't want to have her story carried forward in a way that is teaching a false truth out there in the breast cancer community in terms of what is practiced these days. Um, she was not given an oncotyping test 'cause they didn't exist yet in her story.

And so she was able to ask for a more potent package of chemo, and she compared her story to someone that was reticent and reluctant to have as strong of a package and that person did die. And, and that's unfortunate, but I don't want her story to be told in a way that is misunderstood here. So I wanna say that it is your doctor and your oncotyping test that need to inform whether you have chemo.

If you're a new patient just facing all of these, uh, possible scenarios, you don't need to worry that be because of Lori's story. She survived because she argued for stronger chemo or more chemo. That's not the way it works. That's never been the way it works. And now we know why is is because we can see some of these mutations and the way that the cancer cells are acting and working and the Oncotype test is the key to figuring that out, that formula of what you specifically need.

There will be more specific tests as we get further down the road in research. Um. And maybe this is a good time for me to talk about research. It's a heavy week for me. I have a heavy heart this week because just yesterday, breast cancer.org came out with a podcast. Updating us on what the federal government's situation and, and lack of funding for the NIH is going to look like for the breast cancer community.

And I consider breastcancer.org a very strong authority on this. So I'm taking them seriously when they say that probably by October of this year, there won't be a lot of research dollars left in the breast cancer research world. And that is extremely heartbreaking for me as a breast cancer advocate and as a research advocate.

And I don't take it lightly and I don't expect that it probably will change, but I think there is still some hope that the judiciary or the Department of Justice will step in and alter that. Um, I don't wanna talk about the wider world of politics here, um, but I do talk a little bit more about it in my new Substack newsletter.

And so if you're interested in following that part of my heart and my concern, uh, you'll hear more about it if you do follow my, my newsletter on Substack, either through your email. Or you can also follow me through their app the substack app and even get access to a little bit more of my political side there.

There's a little bit of a social media. Platform on Substack now that didn't exist before. And so you can make it what you need it to be. You can make it just a newsletter or you can make it into a kind of a, a Twitter like platform. And so I'm doing both. And the, the Twitter like platform, it's kind of a little bit like Instagram.

Like you can write more words and add more pictures. Um, I've never been into Twitter myself, but I, I see it as being similar to Instagram and I loved Instagram and still, still love it on certain days, but trying to distance myself from it a little bit now. Anyway, you can find that on the Substack app and, uh, follow me there in a more daily way.

My work as a, a lobbyist for the National Breast Cancer Coalition has been around getting more support for breast cancer research.

And the Department of Defense in particular, and also getting more support from elected representatives around Medicaid and making Medicaid available sooner to people like Danyel who are ultimately dying of metastatic breast cancer and should be well, are eligible technically by the letter of the law for Medicaid, but they have to wait a mandatory waiting period of up to two years for.

The Social Security Disability and Medicaid benefits. And so I've been really active lobbying for that, um, those changes to happen. And so it's, it's no surprise that I would be disappointed, of course, with this change in NIH and National Institutes of Health funding. That's, that's just happened in the last month or so.

So kind of shocking, kind of disorienting, kind of heartbreaking. Very important to keep talking about in my opinion. And so let's keep talking about that. If you get onto the Substack app, you can actually chat with me directly in messages and in the chat. So, um, you can find me there at abreastcancerdiary.substack.com. There's no at sign in the beginning. It's just abreastcancerdiary.substack.com. That leads you to my main SUBSTACK webpage, and then if you get onto the app, you can follow me there too.

And then finally, my last guest, Christine Handy, is a friend of mine and I had read her biographical story, her autobiography, uh, called Walk Beside Me a couple of years ago when I first met her, and was really just delighted to hear that.

There has been a movie made, not just about that story, but about her continued story after that story ended and her "going flat" part of her story. Um, she's been a huge flat advocate and I really encourage you to listen to that interview if you haven't yet. Um, she's just such a champion for body positivity in a way that I really relate to.

I think mainly what she wants now is to change Hollywood and make our breast cancer stories a little bit more honest in the way that they're portrayed in film, and that's kind of her passion at the moment.

So that's kind of my reflection on the last few episodes. I wanna talk a little bit more about Substack and how I've kind of restructured my communications scheme. Personally, I used to be all about, well, way back, I was all about Facebook and Instagram both, and um. Had started some groups on Facebook, mostly for DCIS and Lobular, but I've really backed off of Facebook and I've taken it off my phone.

I don't really interact that much there anymore except for in my work with Stand Tall. Sometimes I get sucked back into it and I'll comment or like something here and there, but I really try to stay off of it and I only go on my laptop, so I'm trying to work up the courage to take Instagram off my phone the way that I did Facebook a couple of years ago, and the way that I'm weaning myself from Instagram is that I have become very active on Substack. I learned from one of my favorite podcasters who is not in the breast cancer community, that Substack can be used as a newsletter platform. I had no idea. I thought it was only for authors and mostly authors of fiction. And so I didn't think it was a platform for me until about a month ago, and I learned very quickly and. immersed myself in all kinds of tutorials to figure out how to interact with my audience now, both my YouTube audience and my podcast audience on Substack instead of MailChimp, and I am loving it.

It is so much more of an authentic. quality, community. I feel that most MailChimp newsletters are cheap and sleazy and just so icky. I just don't wanna emulate them. And so I've been really hesitant to put out newsletters very often, but because Substack is a quality platform that has quality content and no garbagey ads or strange algorithms. So I've been so, so disappointed with Instagram. Not to mention all the political stuff now lately, but I, I don't talk about this very often, but I'm a nutritionist, I'm a functional nutritionist, and functional medicine practitioners have been highly censored in every social media platform.

And so I have heard that because of the lack of censoring, the whole censoring umbrella, being removed from. Facebook and Instagram that it has been a friendlier place for fellow functional medicine practitioners like myself, but it's not worth it for me to go back there. It's just not, it's not happening.

I'm still on YouTube now and then not as often. Um, but I love Substack because it's a quality clean. Pure experience where you're just getting what you're asking for. There's no ads, there's no, you don't have to pay to be on it. Um, there is the option to pay the people that you're subscribing to, to offer you the content that they're offering you.

And my A Breast Cancer Diary Substack newsletter will always be free to everyone, and you can always just. You know, pay if you'd like to. I do have a couple of other substacks that may become paid platforms. One is very new and I started it just because I was giving a talk to a local breast cancer organization about nutrition.

And I decided recently that I was going to use Substack instead of YouTube for my nutrition content now. I have about a hundred videos on my nutrition channel on YouTube. It's never gotten very much traction there because of that censoring issue. Uh, because basically 'cause Big Pharma has a vested interest in, places that are doing the censoring.

Um, and big Pharma does not like functional medicine because we. Tend to heal people without drugs and, uh, there's, there's no mystery about that. So instead of trying to resubmit all of my a hundred videos of about functional nutrition onto YouTube and put up with their ugly ads that I don't love, I've decided to take them down off of YouTube and resubmit them into substack on a new platform that is a paid platform.

And so in the future, when I have paying clients that work with me one-on-one over a number of months, I will give them free subscriptions to that platform to look at all of my old videos. And for folks that can't afford to see me one-on-one, they can pay for a month or two or a year at a discounted rate on Substack and get access to all my videos and not have to watch YouTube's ugly ads.

Which gives me some solace. 'cause I don't like offering healthcare tips and advice in the environment where there are ads being offered in the middle of my video that I completely disagree with and do not support because they're not healthy things that are being sold. So I feel really good about this restructuring of my, my first YouTube channel, which used to be called Seeking Deeper Health.

It's no longer called that. I'm rebranding it and I probably will still use it I don't know exactly how I'm gonna use it, but the one video that went pretty crazy there was about spas and essential oils, so creating a spa-like environment in your home. And that was definitely not the focus of that channel.

And um, so I might still do something about spas. I'm a big spa fan. I like to do reviews of spas. I've done that some on Instagram. So I might do a spa reviewing channel in the future. Using that platform. I still have my Estrogen Diaries YouTube channel, which is how most of you have found me. I think because that's been my most successful social media platform by far.

Um, I still have people finding that channel all the time, even though I'm not posting videos very often. I'm gonna be putting much more energy into substack, including my writing, which is a new, a whole new offering for me.

I have not shared my writing much. Um. I've been working on a couple of memoirs and a collection of essays for a couple of years. It's been a really fruitful time in my life as a writer since my breast cancer diagnosis, and I've known that I would share that writing somehow, somewhere, and I figured that I would probably self-publish a book or two or three.

And I've shared my writing in Wildfire Magazine a little bit with essays, but Substack is a platform that was created for sharing, writing, and um, long form writing. And so I'm thinking about serializing some of my writing on Substack, and if I do that, I think it will be under a breast cancer diary. My, my substack newsletter there that is the same name as this podcast.

So it'll be easy for you to find. Uh, the other couple of substack accounts that I have is one for my local flat group, which is called West West Valley Flatties. And it's just for us locals that get together in person. So it would not be of interest to you, but you might see it.

When you see me on Substack. You might see that I have that other Substack uh, account, and that's what that is. It's just for locals only. And then my paid substack. Nutrition, offering is, uh, it's called cleanup after breast cancer, if you're interested in that. And it's basically just the price of one, one-on-one session with me as an intake, like a 90 minute session with me.

You can get a whole year of content there and I'll be uploading my videos and I will be breasted in those videos because a lot of them were made before I had my mastectomies. And then I'll be making new videos to add to that as well. And then I'll have some challenges. If people want challenges, if they want accountability, and to be challenged around health, uh, nutrition and exercise especially.

Oh, and then I do have, I have another substack. I've gone crazy on the Substack and I created one for my new pilot project, which may turn into a nonprofit organization called Walk Away From Breast Cancer. So that is just about walking, it's just about forming teams and accountability groups around walking.

So very simple mission in, in that one, but that one is open to people. All over the world. I am encouraging folks to take my model and replicate it in their own communities, and I am nearly at 40 minutes. So I'm gonna try to wrap up here really quick. Um, I wanted to make a couple of announcements for the first time.

I've been being interviewed on other people's podcasts and YouTube channels, so wanted to share my first couple of interviews with you. One is out now and one will be out in the next couple of days. Uh, the podcast interview that I did feel really good about it. It's a good representation of my story and it's with a gal that I know pretty well and I trust pretty well, and I love her podcast.

It's called Breast Cancer Conversations. So if you look for that in your podcast players, uh, you'll find me there in her latest interview. Uh, Laura Carfang is the gal that interviews me. And then the one that's coming out on YouTube in the next couple of days is, uh, a very large YouTube channel called The Patient Story, and their mission is just to get more information out about cancer and different cancer patients.

Very differing stories. Like everyone has a little bit different of a story and so they wanna tell as many of those stories as they can, and they have a website and they put out at least one video per day, every day, all year long on YouTube. So it's pretty big channel. They didn't want me to share my last name for some reason, so you can't search by last name, so you'll just have to watch for it as I do over the next couple of weeks and maybe subscribe to that channel if you're interested in hearing more cancer stories.

And that will be, um, kind of short. I think it'll be like a half hour long interview. I don't know how they're gonna edit it, but it'll have a lot of pictures of me and my family and my life, which is new for me to share that kind of personal stuff online. So, um, and then I have a new video coming out on Estrogen Diaries about my new prosthetic.

I've been wearing it a little bit more and I have some tips and tricks around, working the best ways to work with a custom prosthetic. So in my case, I have a prosthetic that was, a scan of my body that created the prosthetic. So it matches my, it's meant to make my left side match my right side, basically so again, if you wanna follow my Substack newsletter, if you wanna get it in your email inbox once a week, you can go and subscribe at abreastcancerdiary.substack.com.

And if you don't want it in your email inbox, but you wanna follow it on the app, you can go to the app, download their app, and then just look for a breast cancer diary under the Substack app.

And you can join me there in the chat and in what they call notes, which is kind of like the Twitter, Instagram option, and on my weekly email blast, which comes out on the app as well. I will not be having a guest next week either. I will be talking about my advocacy journey because I've had a couple of people asking me about this recently, and I realized that my YouTube video on it was not taking off and getting the exposure that it needs.

So I'm gonna do it on the podcast instead. Just me talking about how I became an advocate and how you too can become a breast cancer advocate and the different ways of being one. So stay tuned for that next week, and I will talk to you then.

My friend Christine joins me on this week's podcast to tell her story of explant and continued success as a model after her second "mastectomy," going flat and embracing her concave chest publicly on the runway. Her new biopic is coming out on April first in LA and she's invited us breast cancer survivors to come. Shoot me an email to find out how.

kathleenmoss@protonmail.com

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We spoke about Christine's new film premiering on April first. Here's the Preview!

You can buy tickets to join us here, but be sure you can come first because we really want to fill these seats!

The organization that Christine and I know each other through is Stand Tall AFC

Transcript:

My guest today is my friend, Christine Handy. She is a breast cancer disruptor and a fashion model living in Miami, Florida, and now she's a film producer—just recently. Her breast cancer diagnosis was hormone positive lobular breast cancer. And she started out with implants, and that's really what I want to ask her about first today is the journey of the implants and what that story looked like for you as a model, as a fashion model.

How did that disrupt your life?

C:

Well, I think originally breast cancer disrupted my job. That was in fact, I really wasn't planning on going back to modeling until I had implants for seven years and I really did love them, but they did not love me. And so seven years into it, I would say to my oncologist after my treatment, “Why am I still so foggy? Why do I still have joint pain? Why do I still feel this? Why do I have all these questions?” Because they were pinpointing the longitude of these symptoms on the amount of chemo I had, instead of looking at the fact that I had implants. And so I never thought that it was the implants until ultimately I had a MRSA infection in the implant and they were excavated. In an emergency situation, because I almost died the night that they were excavated, I had 104 fever and, um, it was, it had not gone into my organs, thank God, but MRSA is very dangerous. And so when I was, after I lost my implants and I woke up, it was during COVID and there was nobody allowed in the hospital.

So I woke up from surgery not knowing what I was going into like they didn't say “you're gonna wake up with a concave chest.” They just were “sign this form that says you're having number three and number four mastectomy,” which was its own trauma and I was like, “I can't be having mastectomies already had mastectomies in 2012 when I had breast cancer” and they were like, “just sign it it's for insurance reasons.” And I woke up in the hospital alone in the recovery room and there was so much grotesque pain and I reached to the middle of my sternum where there was grotesque swelling and I could tell that the swelling was in the middle of my chest and I kind of moved my hands to the left and to the right and there was empty space. And I thought, “I have no idea how to respond to this. I have no idea what the future of my chest is going to look like.” And that was frightening. And about three weeks after I was in the doctor's office, and he said, “you know, there's no chance of reconstruction. Because you've had so many surgeries on your chest, you have very little skin.”

We had to take skin because the infection, you know, got into your skin. And that was, that was it. The game over. It wasn't like I knew that aesthetic flat closure existed because I didn't, nobody ever told me that existed. It wasn't a choice. Whether I would have made a different choice or not, I don't know, I can tell you that from a health perspective if I had known the risks of implants if I had known That multiple surgeries and reconstructions took so much time away from my life and my family Then of course, I would have chosen a healthier path And so it was then that I said to myself if I feel this I have this amount of emotional pain and I have a solid self esteem, I have a solid foundation and faith. How do these women that don't have a massive team like I do of women championing for them, have a solid self esteem, which many of us don't, and I can talk about it freely because I used to not. And maybe not have a foundation that I feel is unflappable, which is my faith. What do people, how do they get through this? And that was when I thought to myself, I have to go back to modeling. I have to get into New York fashion week and model on a bigger stage. I need to go to Miami swim week and model in a bathing suit. I need to go to package this up to major brands. And ultimately I did it. It was not without a lot of closed doors. But we opened a lot of the—my manager—and the reason was so that I could say to women my beauty was not dissected because my chest was excavated. My beauty is whole because I know who I am and my foundation is my self esteem and my faith. No one can take that away from me. It has nothing to do with the external. And if I could show that, then maybe other women could heal and see that as well.

K:

Yeah. Yeah. I just saw it because I follow you on Instagram and I love the content that you share. I just saw an interview that you gave recently and you were telling the interviewer for a news show, I think it was, that you were brave to model. That other women in these situations can be brave and not just brave, but you model self love and self celebration.

You're celebrating your new body and you're doing that to show others that they can do that. And that's so much the kernel of truth that I feel was what happened to me. personally when I, after I was flat and had some confusion about what I should think about this new body. And then, you know, becoming a part of the flat community, people shared what was possible and modeled what was possible.

And so I just thank you so much for doing that in such a much bigger scale and on such a much bigger stage. Um, I want to go back and talk about what it was like to model with implants. So like, was that awkward? How long did it take you to get used to just having implants, having, you know, appearing breasted in the modeling? I don't know if it was photography or if it was runway at that point?

C:

Photography. Yeah. Um, you know, a lot of models have implants and that was, I, I never did, which was kind of odd. I felt like I was maybe the oddball out. And so it felt very ok and normal and natural, like, Oh, well, I'm now I'm just part of that club. know, everybody did it in their twenties or even earlier. So I'm just, I felt very safe and comfortable.

And I also, you know, part of the reason why I felt comfortable on implants was because I had, you know, kind of a bigger chest when high school and then had some eating issues with my modeling career. And then they were kind of smaller and I didn't always love my chest, to be honest with you. And then I was like, Oh, these implants. I wish I got a small size of implant. I didn't go like big and I was like, these just don't move. They're perfect. They just sit there and you know, I, I didn't mind them, you know?

K:

Okay. So they weren't lopsided. You didn't get any capsular contracture or hardening of the, the scar tissue around them. It wasn't awkward. Okay. So, and you did have a similar breast size to what you were used to then.

C:

They were just fluffier and they weren't sagging.

K:

Was it easier then that you didn't have nipples or did you?

C:

So my breast cancer was right underneath my left nipple. And so I didn't have nipples. I did have some sort of tattooing, but the tattooing didn't really work on my skin and I scar really well. So it, it was okay for me. Yeah, I felt okay with it all. I, again, I never knew. I just thought that's what people did. They had breast cancer. They got implants. I didn't know any different.

K:

You did swimsuit modeling still, right? So in some ways without nipples, it almost would be a little less awkward physically maybe to do swimsuit modeling.

C:

People would say that to me. They'd be like, well, you know, you, you don't need nipple covers. And I thought, okay.

K:

Yeah. Okay. So you were pretty at peace with the implants until you realized that they were maybe Part of the problem of some of the symptoms you were having?

C:

No, they were the problem. They were a major problem.

K:

So you you realized that before surgery then like you knew that was the solution? Okay.

C:

Absolutely. It just was, it didn't, none of it made sense that I was seven years after chemo, still having all of that, those other symptoms, which weren't congruent with somebody seven years out having that. And, and they said, well, maybe it was the tamoxifen and it just wasn't, it wasn't symptomatic of the tamoxifen. And so none of it was making sense and I was kind of frustrated. then it was like the implants went haywire and I was like, it totally made sense. It totally made sense. Why are we just figuring this out now? I was so frustrated.

K:

What were the main symptoms that bothered you?

I mean, I had really bad kind of a fog, a brain fog, and I had joint pain, which was debilitating. I had inflammation. I just would wake up every day, not sure of How I was going to feel, I never felt good ever. And then the implants came out and I had that excavation. And after the grotesque physical pain went away of that, that surgery, I felt different, like very different right away.

K:
And then after you went flat how much healing had you gone through before you had this epiphany of “wait. No, I need to get back out there, I need to go to work with this body” or did you wear prosthetics for a little while? Like how did that develop?

C:

Never, I never owned a prosthetic. I had a prescription for one. I literally looked at it. It was like, I'm never filling this. I never once put a cup on. I never once put a bra on again. Never.

K:

Why do you think you didn't?

C:

Because I think I had such a solid foundation with my self esteem and such a solid foundation with my faith that I was like, Okay, well this is now my job to use this pain like I was so used to using my pain for purpose, like, “okay now I've got this job now.”

I have to use this to help other people. How can I do that? Well, I've been a more a model for 40 years Duh, how I have to do this. so it was so It it made so much sense I would go back into the modeling agency and also the modeling world. And it's funny because, and I have a post about this today—how there's so many doors that can be closed, but if you keep going, another one will open.

And so often people quit in the middle. I first was concave and I went to my modeling agency that I'd worked with for years and said, I'm going to come back to work. They were like, okay, great. then I went in and they said, yeah, we don't think so. it was no, and it wasn't, I didn't take it personally. Like if we can remember that none of this is personal, they just didn't, didn't have my vision. And so I was like, okay. So I called my manager and I said, I need to get back into modeling. I'd like to start doing runway. And she was kind of like, okay, but she's a, she's a champion for me. And so she got me into some runway in just to see the shows, to go attend the shows, and then I would walk up to the designers and say, my name is Christine Handy. I'm a long time model. I had breast cancer. I have a concave chest. I'd like to work with you. I'd like to walk in your show. We can help a lot of women. And people said, yes. And then ironically, after I partnered with, well, I did various designers in New York fashion week. I did Miami swim week. And I did a partnership with Victoria's Secret.

And then I got this modeling job that approached me and said, we want to sign you. And I thought, isn't that interesting that it's not the same one that I'd worked for, but how that door was shut because this modeling agency was coming in and a much bigger agency, a much bigger platform. So that's a good lesson of just wait, be patient, keep going.

K:

So I know in your like 20s and 30s you did like The Gap and J. Crew and a lot of like fashion magazine modeling. And it sounds like when you came back, you eased your way in more through runway, like live modeling. What do you like better? Do you enjoy one over the other?

C:

Um, you know, I felt, I feel very at home in front of a camera because I started when I was 11 years old that's just kind of what I did. And so when you have a job that, that spans decades, you're pretty, usually pretty comfortable in that space. so when I did runway, it was a little bit uneasy for me. Because it's, you're really, you're kind of in front of, you're meaning you're in front of cameras, but you're in front of a live audience. I'd never done runway before so it just took me about a month before New York fashion week, before the first time I did it, and I would practice every day cause I didn't know how to walk in a runway. And I wore really high heels because you never know what kind of heel they're going to put you in. And I needed my calves to be able to handle whatever slingback shoe they were going to put on and maybe not stable. I worked out in those heels. I went to the grocery store in those heels. I walked on the boardwalk in those heels.

I wore those heels 12 hours a day. Because I wanted to make sure I was, know, going back into the modeling space, doing something completely different, but it was my job show up like I had been doing it for decades. And so I had to train my body how to do it. And once I did it once in New York fashion week, I was like, okay, I got this. I can do this. Then I went to Swim Week in a bathing suit with a concave chest and I was 51 years old.

K:

And no regrets?

C:

God, I loved it. I mean you could, if you read the messages that I got from people all over the world, you would be so glad that you had that moment. Next to my, where I got out of bed one day, I was like, I got to go back to modeling. And it was just that fleeting moment. And I could have just said to myself, “you know what? You don't have to do that. It's you've got other projects and why put that on you? You're not a runway model.” There's so many reasons why I could have just said, nah, but I thought this came from somewhere. This, this spark came from somewhere I have to follow through. And, and by the way, if. If the doors, other doors didn't open.

If I didn't get New York fashion week, I didn't get Miami swim week and I didn't get big brands. I would have been like, okay, I tried and it wasn't meant for me. So I'm going to go down a different path, but it was meant to happen.

K:

And now in your 50s, you've got regular modeling gigs still, or do you just do the fashion weeks now?

C:

No, no, I turn them down. I've turned jobs down all the time because I'm so busy with the film and I'm so busy with other things. And so I, will I go once the film is launched, will I go back to more modeling? Maybe I think that, you know, I've done a lot of speaking recently internationally, and I think that my heart. Is kind of going in the direction of being in front of a stage in front of people. And so I think once the movie is launched and settled, I think I'll go, I'll start more speaking.

K:

Okay. I want to talk about the film, but one more question about your modeling career. I'm really curious to hear now that we have these dove commercials that are setting new standards for body positivity. We have shapely models now all over the place, and we now have some breastless and Uni models, uni-boob models. Are you getting people knocking your door down? Like, is there more demand? Like if you didn't have the film would there be more demand that you then you could handle because now we have a new standard In the beauty industry.

C:

Yes, I think for sure. I, you know, looking back on my modeling career, when I was at the height of my career, maybe at 21, 22, there was nobody doing this and there was not, there wasn't different body types. There was one, but that was 30 years ago. And so the change has been significant, but it takes people a lot of courage to make those changes and they would have never, no, none of those big brands would have partnered with me had there not been a shift already. Nobody would have said yes to New York fashion week for somebody my age with my body type. If the change had not started a while ago. And the only thing that I could do is try to, you know, permeate more change within the industry. And I, I'm, I'm certain I have, you know, showing up with a lot of courage and, and I love talking about courage because so often I don't wake up with courage every day. None of us do. But if we can see somebody with great courage and we can borrow their courage, maybe that gets us to the next day when we have our own courage. So by me modeling flat, if that gives somebody courage, then I'm lending that courage. So that's that person can then use that until they get their own courage. And that's why I think women championing for each other and elevating each other. We all rise together. There is no competition. There's no ceiling to how much we can help people. when we do it collaboratively and collectively, we all rise together.

K:

Yeah that's the quote I was reaching for. “You can borrow my courage.” Thank you. We've all borrowed your courage at this point, um, and I think on Instagram as much as in the public sphere. So thank you for that. Who do you give credit to for the beginning of this change that's happened for body acceptance and in the industry?

Do you see where it started or can you give credit to someone before yourself?

C:

You know, I, I think it started with the... I don't know what the right, it's so hard these days to be politically correct on what language to use, but the plus size model was the first to change it. they were the renegades and I give a lot of credit to them. And then it was these other subgroups, um, that came after that. So I think they started it. Yeah.

K:

Okay, so the women themselves, not, not the industry starting it, but the women pushing for it?

C:

I think the plus size models did, had an enormous impact on the modeling industry and on the fashion industry and on marketing, the marketing industry. I, yeah, they did an amazing job and, and I think they, they paved the way for other people like myself to come in and go, okay, well, what about this subgroup?

K:

All right. Well, when I first met you, maybe a couple of years ago, year and a half, two years ago, you gave me your book, uh, you sent it to me in E format and I read it right away and I was so amazed. I loved it. It's called Hello Beautiful… And it's. Oh, Walk Beside Me, right. Sorry, the film is called Hello Beautiful.

Walk Beside Me was your book, and Walk Beside Me was, I feel like it was part one of your story, and maybe Hello Beautiful is, is picking up where it left off, because it's, they're pretty different, I think, but what I remember about your book, and it's been a while since I've read it, but is your community of women friends that you didn't even realize the power of. They held you up in times of deep, desperate weakness. Um, you had a health, a major health struggle before you even had breast cancer, um, lots of pain, lots of physical pain. and working and fighting through that. And you tried to do it alone, and you insisted on doing it alone for a while. And then you realized you needed help.

And the book and the story is such a beautiful example of relying on your friends, your women friends, and specifically for you, friends with a deep sense of faith in a Creator-God, you know, the God of the Western religions. You really transformed through that story, and you showed yourself to be a different person at the end of it, um, and of course, none of us knows what this new film is really going to tell us, because it hasn't come out yet, and we've only seen a couple minutes in the preview, but I'm gathering that this has a little bit more to do with your family relationships and maybe when you wrote the book, you weren't as comfortable writing about something so tender in that moment and addressing the family relationships. I'm excited to hear more about the family dynamics, but tell us like where, where do these two stories overlap? Is there some overlap between the book and the film and where does the film start?

C:

It's funny that you say that nobody's ever asked that question that way. And I've been interviewed hundreds and hundreds of times, and I love that you just said that the book is a total 180 transformation. I talk very openly about the things that aren't very flattering about my life. And I do that because I think it's so important we negate the social media, um, this perpetual, like, highlight reel that goes on in social media.

I can't stand it. It's not fair. It's teaching our young women that they're not good enough. And if I wrote a book about my friends and how they showed up for me because there was some lack at home how oh great my life was because they brought me food every day and they showed up every day and they brought me gifts and they celebrated my birthday and they were there constantly and they taught me about God and that's a portion of my life.

But there was this other portion where I was like getting rid of all the false idols that I had depended on for so long that weren't—they're not what I should have been focusing on. You know, I was more concerned about going to a workout class than a Bible study. I was more concerned about the Prada bag because of the label. Then I couldn't carry it because of my arm was fused. It was all these things that were being like my beautiful hair that I had coveted for so long that was kind of part of my identity in the modeling world. It was taken, it was gone. So it was surgery after surgery, after illness, after illness. I first had my colon. Third of my colon removed and then my arm and then breast cancer. And so it was like this, this pressure cooker that I was in and my friends, they were the ones that first taught me about courage. They were the ones that stepped up and said, we will be your guiding light.

We'll be your courage. And so the book is about that transformation and it ends, the book ends with a chapter that you really don't know where she is. Like you don't know where she's going. It ends with a kid on the beach playing a guitar and she's in, it's kind of broken the guitar and she's like, “yeah, that was me. I was kind of broken, but my angels were nearby.” And then the, then the book ends.

Well, the book was published in 2017. After that in 2020 was when my chest was excavated with the implants. So that's doesn't even, that's not in the book cause it didn't happen. So we took a part of the book that was breast cancer related and didn't bring in the arm and didn't bring in the colon cause it was confusing on screen.

So when they were writing the screenplay, they were like, we have to have one illness. And we can't have 30 friends, we can't, there's no capacity on a film to have that many. So let's pick a certain amount of friends and put the different characters within these friendships. so that's part of the shift in the film. And then you have to have, part of the reason why we show a family dynamic is because not just the patient that goes through the disease, the family goes through the disease. And how not fair would it be for me to show that there's this perfect life at home, me going through this disease and everybody showing up for me and my family, when that's typically not true. Like, I want to make sure everybody's included in this film. And then show that the concave chest, because that now existed in my life. I didn't want to show implants, for sure didn't want to show implants. I would, I was never going to promote that.

And so we had this element of now we were, we're going to show that. And we, we couldn't, we made the decision in the end to really show it because I thought we can talk about it, but it's never been shown in film and what an impact that would have if we actually showed it. so I think that's going to make a big splash in the world.

So we were trying to figure out all the elements that would help the most amount of people. That's really where we took bits and pieces of the, of the book and then added bits and pieces of my, my life. Now I will tell you that I did go through a divorce. We do not show that in film. The couple is a beautiful, you know, it's maybe it's a, maybe it's a, uh, a prayer of what I’d want—this isn't what I want my future to look like. I want this type of beautiful relationship. And by the way, in the film, It's very tumultuous. It's a roller coaster. Like a lot of people go through, you know, disease affects everybody in the family. And so I hope that that's a long way to answer your question.

K:

No, that's exactly what I was wondering. And I know you have two sons, right? So how, how are they dealing with this, this film? Is it making it, them nervous? Do they feel like they're gonna be represented in the wrong way? Or is it because you put a daughter in the film to kind of take it away? Maybe, I'm guessing it's taking the attention away from them.

How does that work for them?

C:

For sure. The situations that the daughter goes through are, are the, they're very different than what my sons went through because she's a daughter and I can't, I'm not going to give away why, but when you see her situation, it'll be like, duh, that makes sense. She's a girl.

They're boys. we made it very clearly. This is not what the issue was at home, but there in the book, it obviously hints that there was issues at home and, and so I, they've never seen the movie. I see it all the time. My parents have seen it. They haven't really been wanting to see, but they'll be at the premiere. You'll meet them. They're brave kids. And by the way, they had a sick mom for a very long time. they went through their own hell and changes because of their sick mom. I didn't have a sick mom, so I can never judge how they behaved. And by the way, fear translates into anger. When you're afraid, people typically get mad.

And that's a reaction. My kids were afraid I was going to die. And so they didn't want to get close to me. And that's a normal psychological reaction. Although it was hard for me to have some distance within my own family. It wasn't out of the ordinary.

That's so interesting for you to say that because I've just been getting closer to my daughter again for the first time after my Diagnosis. So, yeah. I think again, all of these things are so worthy of talking about and so often they're misunderstood or not talked about. So if we can put a film out there that talks about these tough issues, again, not flattering but truthful, that helps a family.

K:

Yeah. I know you can't see through to their hearts, but do you feel like your faith has translated into their lives, the boys?

C:

I do. And I think I, I think what I taught them early on in their life was wrong. I taught them to covet things like I did, and I'm trying to change that in their life. And I think by being a service in the world, they see that now versus self serving, which I used to do. You know, what can I get out of something versus how can I give? And I've done this for a long time now since 2012. So I think it's, I think it's shifting in their minds. I do it for them too. You know, I want to leave a different imprint on their life.

K:

Yeah. So what are you most proud of about this movie?

C:

You know, when I was going through breast cancer, I sought out film and TV because I had no idea what I was about to go through. I knew I was going through chemo, but I didn't know how to even wrap my brain around it. And as you know, when you're diagnosed with an illness, are inundated with medical information to ad nauseam.

You can't even hear it. At least I couldn't, and when I sought out films, I sought out films about cancer because I wanted to see how they were displayed on, on, in media and also in, you know, with, in narratives and stories. And in 2012, there was no Instagram, there was no Facebook. And so I wasn't looking at Facebook groups to talk and chat that didn't exist. So a lot of people like myself, we looked at film. And I was disappointed in what I was seeing there's a diagnosis and there's a funeral and there's not much in between and I was like, “I'm going to die. I, I, I don't know why I feel so much hope. I don't know why my friends are saying that I'm going to live. I'm going to die.” And that, that, that scared me that there was so much media film about that. That ending, that type of ending in 1970, 80 percent of breast cancer patients died and 20 percent survived. That's flip flopped.

80 percent survive and 20 percent don't. Why are we, why are these the same films we're watching?
Why is this the same ending? I felt righteous anger about it.


And I said to myself, if I can ever write this book, I'm not a writer, so who knew . If I can make this book into a film. That would be a dream of mine to change the narrative in film on cancer. And so it's been since literally 2013 where I've had this idea in my head like, What if I can change that?

What if I can put a movie out there that ends in hope and ends in survival? Wouldn't that give people hope? And so that's the whole reason for me, for the film. And again, then there were these other additions that we put into like, Oh, what if we put in the concave chest? Or what if we put in the family relationship?

What do we, so there was always these things that we could add to help, you know, people feel seen and heard. And, and also that you'll see in the film, we show like the depth of pain of chemo. I almost died during chemo. we don't mask that. We're not trying to put a fluffy Disney movie out there. We're trying to show so that people are like, I, I, that's how I felt.

That's what, that's what happened to me. That's how sick I was. And nobody knows it because I was hiding in my bathroom I don't want people to feel that way. I don't want them to feel alone hiding in their bathroom. when my, my father saw this film, which he was really against it, he was like, you don't want to put your life that far out there, you just don't want to do this, trust me, and I was like, I'm doing this when he saw the film, he wept. And he said, I had no idea the pain you went through I'm sorry. I was like, that's the point because nobody sees this side of it. And so I'm not putting it out there as like, Oh, a poor pity party. I want people to see themselves and go, finally, somebody's saying it and showing it. This is what I went through.

K:

It sounds like you had a lot of creative input into the film.

C:

Um, I, I worked really well with a director. We've become very close and he bought the film from me. He bought the rights to the film in 2018, and we collaborated on doing it as a project together. But it was, I, I, when I tell you, there was a lot of closed doors. It completely shut down in 2020. People said it would never be resurrected again.

They said the movies that were going to come out or are about to start will never get resurrected. And I was like, well, you don't know me very well. And ultimately we resurrected it and it, and then there was a writer's strike and then there was an actor's strike and all those things. Stopped the film completely and so many people were like aint gonna happen and I was like, I think it will yeah

K:

Did you get a new director then?

C:

No. He wasn't the one that was saying that It was just outside sources, but he it's funny because um, there were people in Hollywood that said to me We don't need another female led sick lit film I was like Yeah, I think we do. Yeah, I think we do and I'm gonna make it!

Yeah, who knew?

K:

Yeah, we need different stories. I appreciated that Firefly Lane did at least show a marginal issue of inflammatory breast cancer brought to light a different type of breast cancer, like lobular is often, you know, ignored and, um, it's very different than ductal. Um, but yeah, it's, it's so sad when suddenly the main character is just gone and, uh, you don't want to You don't want to identify with that as a patient.
I'm, I'm really curious to see what happens in Virgin River. It's one of my favorite TV shows my mom and I watch together.

C:

LOVE that episode, and you know what? I think she's gonna I think they're gonna have I just believe that they're gonna have her survive—especially that scene where she is with her friends.

K:

Yeah. Out on the beach and they say, yeah, we're going to fight this. Yeah. I love that. I love that. So we'll see where that goes. It's intriguing.

C:

Certainly this movie is gonna start a conversation and And it's funny because I had, there was an article that was written, I can't remember the name of it, but I've read it like a hundred times it came out of Hoag Hospital and that's in Newport Beach, California. And it talks about how Hollywood is, has a, has a say. And how people feel hope or don't feel hope and the guy that wrote the article, he did a study from 2010 to 2020 and he clearly writes how more films end in the funeral of cancer than, than survival and he writes my oncology patients come in and this is what they're talking about and we have to do, we owe you guys owe them better and I reached out to that doctor who wrote this Did this 10 year study and we're having a call this weekend. I invited him to the movie and I said, we have a lot to talk about. And he was like, I can't believe you're putting a movie out about survival and these are the reasons why. And he was like, so happy.

Yeah. I'd love to see more stories about the different facets of metastatic breast cancer too, because it can be a very long and, you know, you can be very active and functional with metastatic breast cancer. And people don't realize that, you know, Angel Studios just came out with a, with a stage four documentary on and she dies. Again, I'm I like feel like beating my head against the wall like there's so many people that survive Why are we just showing one narrative?

K:

So besides Instagram, you and I have a common, um, activity of participating in walks with Stand Tall AFC. You led a walk in 2023 in Miami where women kind of came from all over the place to, to join you. And it, I wasn't there myself, but it looked like a really joyful celebration. Tell me a little bit about that memory and what that was like for you.

C:

Well, I don't usually do the walks and it's not because I don't walk every day I do but I'm usually traveling and so I they asked me to do this walk and I, and I was, I guess, part of the organization team.
And I really didn't know what I was doing with the organization part. I usually don't do that part, but the actual walk, First of all, so many people from around the country and around the globe came because Miami is kind of a hot spot. And that was exciting. And then the stand tall group was mighty and there were, you know, a lot of people that showed up for it. So it was, it was exciting and fun for me. That was my first walk ever in the breast cancer space. And you hear about all these walks around the country and I just kind of always like, well, I should go to one. And so it was kind of, it was, it was empowering for me to be there and to meet other people. Of course, it's, you know, it's always fun and meaningful to meet other people in the community.

K:

Yeah. And you wore the Wendy Sage, for those who are watching on YouTube, I have Wendy Sage right behind me. And you had the t shirt on that had the new Simpsons character with a single breast.
Yes. It was great. What a great day.

K:

And now I'm working with Stand Tall and we just met last week to talk about your premiere, the film premiere in Hollywood with the Beverly Hills Film Festival at the Mann's Chinese Theater on Hollywood Boulevard. Tell us about what that's going to be like.

C:

Well, it's going to be an exciting night. I'm so glad you're going to be there. It's going to be, um, I think a lot of people, I hope a lot of people in the breast cancer community because it's, it's one thing to fill it with Hollywood types and business people and not that that's not important too. It is important and there's going to be, you know, brands like Pfizer represented and, and those types of people as well.

And it's also important and doctors, I really want doctors to be there and there's some some coming. It' a conversation for them as well. But this movie is for the survivors, is for the caretakers, is for the families. And so to have them there to experience it on the big screen. I've never seen it on a big screen.
I've only seen it on a computer. And so to see it all together like that, I'm hoping that it's, it's very impactful for not just the people there, but for all the spreading out of through social media that people are going to share and. only then can we really make this difference in this film. It's not for one night, it's for, it's for the longevity of this film. So, and this is just the beginning, right? We're going to have openings in other places, but this is the world premiere, so it matters. And so I'm hoping, my biggest hope is that when we do show a concave chest towards the end of the film, there is a big roar

K:

Yeah, So talk a little bit more about how we can help get the film into other film festivals. Like we have one in Portland. Um, do you want advocates out there, breast cancer advocates to help you to advocate to get the film into local film festivals?

C

You know, it is, it's important and it's hard because most of the time, I mean, we've gotten turned down by film festivals, I mean, I, I'm not knocking any of the golden globe winners this year, what a difference in a film like this versus the one that won the Oscar Anora, right. And we’re just telling such different stories. And people obviously want that kind of story. It won the Oscar, but it also won the Cannes Film Festival. We didn't apply to Cannes Film Festival, but we applied to Venice and Toronto. And we were turned down because you have these big, huge budget films that are portraying that type of show and they're being promoted. So it takes a community like ours to say, hey, no, we want something like this too. We're, why are we being left out? And so it, I don't know exactly how yet, other than, you know, to get a list of the festivals that we are applying to and to have people write in, say, you know what, we want this film. And I think that would make a big difference. I think it will impact it, but I think it's going to have to be a , grassroots level of people joining forces and saying, this matters.

K:

Yeah, okay, so now's the time to share your handle on Instagram so that you can enlist us to do that on a regular basis Because you're active on stories every day.

C:

I just do. I remember when stories came out, I was like, I don't think I'm going to spend a lot of time on stories. I love the stories. So @christinehandy1 is my Instagram name because there was already a Christine Handy. When I. Went on social media and so I am active on social media and I, I don't use it as a political cause. I don't use it as necessarily personal. I use it for to help people. I use it to inspire people. And that's it. I'm very clear about my, my mission on social media.

K:

Great. Okay, so we'll watch for you there and Want to make sure that folks know that it's not too late to get a ticket as of the release of this podcast Episode I think it will not be too late to get a ticket to your April 1st premiere on Hollywood Boulevard at the Mann's Chinese theater.

C:

And my rate is $23. A ticket is $160. But if you use my family rate, it's $23.

K:

Okay. So we'll have that link down below in the show notes on my website of breastcancerdiary. com. And if you'd like to subscribe to the stand tall newsletter, you can see it in our archives on sub stack. So that's https://standtallafc.substack.Com and we will see you. On Hollywood Boulevard! On the first!

C:

Can't wait. I'm so excited.

My guest today is a breast cancer advocate who uses her voice and her writing to walk alongside new patients in so many ways--she has a blog, a memoir, and now she's got an AI companion for those who haven't found a human connection yet, to process their breast cancer experience with. Her web site is called "AskEllyn.ai" and that's where you can find all of her offerings. 

Ellyn wrote her story of going flat just a couple of years ago while sitting in the chemo chair. Today she's collaborating with functional practitioners as well as brand new breast cancer patients to put out a community blog full of collaborations. I love what Ellyn's doing in our community and I love her openness about all of the challenges she's overcome.

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Support A Breast Cancer Diary Podcast by making a donation here:

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Find Ellyn's blog and AI tool at https://AskEllyn.ai

Kathleen's AskEllyn blog entries are here: https://askellyn.ai/?s=recurrence

and here: https://askellyn.ai/di-indol-methane-and-sulforaphane-and-breast-cancer/

The AI breast cancer bestie story is here: https://youtu.be/2euyqULTvFc?si=XR-C1lwl-yu_k68N

And Ellyn's other podcast interviews about breast cancer are here:

https://youtu.be/1xiNRT_ODsI?si=lZUbk0jX9g3lJ41l

https://youtu.be/iyMI5qAKKBA?si=CHzGd7g8VsBaoXCm

Transcript:

My guest today is Ellyn Winters Robinson, my first international guest. She's from Waterloo, Ontario, originally from Ottawa up in Canada, and she's the creator of the AskEllyn.ai blog and AI tool or companion. We'll talk a little bit more about that later. She's the chief marketing officer at Ignition Communications, and she mentors tech startups, and she's been doing so for many years. She was stage 2b and she had ductal carcinoma. Welcome Ellyn!

E

Oh, well, thank you for having me, Kathleen.

K

Yeah! Yeah, so you and I have been partnering on the Ask Ellyn blog. I've been a guest blogger. This is my first time guest blogging for anyone and it's been such a nice experience.

E

I'm loving having your voice and your advice as part of this, this thing that we're building. So very

K

Aw, thanks. Thanks for being that safe place for me to enter the breast cancer world as a nutritionist. It's a scary thing having had breast cancer. You know, been in the breast cancer community for two and a half years now and kind of zipping my lip about nutrition because it is such a triggering topic for people.

I feel like your blog has been a really welcoming venue for me to talk about that in a careful way. I am very aware that it is full of triggers and self blame and shame. So I'm trying to be very, very careful and sensitive and permissive in all of my nutrition advice.

I know you started with writing your book, which the name of your book, I love flat, please hold the shame. So that was your first foray into the breast cancer kind of public life. Um, I, I was just reading your book this week and really enjoyed it. So that was your first step. And then how did it, how did everything else kind of follow after that?

E

I don't know if your, if your followers would know, or you know about something called the butterfly effect. It was actually sort of a concept that was developed for weather systems, like one little weather system can kind of trigger a massive storm somewhere else. it's also, it's a good way of describing what's happened to me, which is just this domino effect of all these sort of, you know, one thing happens, which then leads to another. And it's just been this really crazy journey over the last two, two years, almost three years now. So I'm coming on my three year diagnosis anniversary in March and I, you know, I think where it started was, as we all do, you kind of go through this and it changes you forever and you just want to start giving back. just want to help that next person not have to, you know, go through this alone. And that's really where the, the start of my book kind of came from was I actually wrote it while I was in chemotherapy because I'm a storyteller. That's what I do for a living. And so I was like thumb typing the book as I'm going through chemo, uh, my phone, and I just wanted to tell a really simple story of somebody that was going through it, uh, that was really relatable and not sad and fun and funny and kind of encouraging so that somebody at the end of it would go, okay, okay, you know, there were hills and valleys and bumps along the way, but she got through it.

I can get through it. And that's the feedback I've had from the book, which is great. And then, you know, even before I put the book out there, I ended up having this sort of chance encounter with another tech startup founder that I work with. We weren't even talking about breast cancer, but it came up in the conversation and then he was asking me a ton of questions and I sent him my manuscript. And lo and behold, he used that as the basis to create Ask Ellyn. And so, suddenly I found myself with a digital version of me who, you know, this AI knows my story and. She is really smart and understands everything going on in the world, but she also, you know, has all of my personality and experience and emotional responses. And so we launched her, that was about a year ago. She's just had her first birthday in October and, uh, and she's out there now and now I just learned in the fall that she's been selected to be part of something called the City Cancer Challenge, which is organization out of Geneva that is delivering digital navigation solutions to countries in the world, low to middle income countries.

And so she's now, too. So, yeah, it's just been this really crazy, you know, ride. So, you know, it's kind of one of those advice I always give to a person when I sit and mentor them is. You know, don't get so caught in your course that sometimes you miss these other opportunities that are kind of, you know, floating down the river toward you. And that's exactly what's happened. It's like, you know, okay, I say yes to this. And then all of a sudden it leads to something else. So, yeah, it's been a really crazy, crazy, crazy ride.

K

Wow. So, okay. So you did the book first and it was published. The manuscript was then used as kind of a full download to create Ask Ellyn the Robot or AI Companion. And then you started the blog after that?

E

Yeah. So, we launched Ask Ellyn in the fall and I don't have any marketing dollars to put behind this at this point. That's just all a very much a labor of love. So I thought, what if we looked at breast cancer sort of through a lifestyle lens? So fitness and nutrition and wellness and mental health and intimacy and relationships and family and fertility. so that's what's starting to come together and it's really cool. I've had women from Ireland. I've had, you know, I haven't had, um, uh, contributions yet from some of them, but people have reached out from South Africa. It’s just really neat that I'm sort of getting these international voices that are starting to come together. And then there's folks like yourself that can be because you, you have this, you know, expertise that's really important. I'm a big health fan. I, you know, I believe in, you know, fitness and exercise and eating well.

Those were all things that were really important to me before I even got diagnosed. And so, um, you know, having that expertise women can tap into, but in a, you know, empathetic, I really get you kind of way versus this. I'm a doctor and you're a patient and you know, it's just a different dynamic. Just women talking to women and very wisdom focused because that's where much of the good advice I was getting was coming from these other women as I was going through this, right?

K

I found you when you were just launching your book. I found you on Instagram. And so I always identified you primarily as a flattie and your, your identity around being a flattie, um, which you have a beautiful body by the way. I love the photos that you've put online and I thank you for, for sharing something so intimate, um, but yeah, getting to know your blog, I see that you are really trying to be a lot more of a generalist in terms of your, your outreach and the material that you're putting out on your blog. You're not exclusive in terms of your identity as a flattie, but just really trying to support women.

E

You know, when it comes to, you know, breast mound reconstruction or any kind of reconstruction, because I consider, you know, being flat a chest wall reconstruction. I want, I've always said I want flat to be an option and I want it to be presented as an option because so many women are, I was completely unaware that that was even a third choice and it was a girlfriend of mine who told me about it. And so I would like to see that changed, but you know, at the end of the day, I want any woman going through this, it's hard enough to go through this, but I want them to feel really good and comfortable. about whatever decision they make. So I always say, you do you. If you want to have, know, implants and go that reconstruction route, I know lots of women who've gone in that route and are very happy, and then some that aren't.

And then I also know, you know, women who've gone flat. Obviously, it's a big, happy community out there. And then there's also women who've had DIEP flap surgery as well, and are very, very happy with that. So I'm just like, no judgment here. I will support you. And so I definitely want to incorporate. those voices, those options into the into the narrative of the blog.

Yeah, so it's not just about being flat. I'm really happy that I made the decision I, I made. I was watching, the home edit woman, Clea Shearer, who's now having her 8th surgery and is probably going to have a 9th, on her journey toward breast reconstruction.

And I'm just like, I just wanted, that was my reason. I just wanted to get on with my life, you know, I don’t try to be strident or anything else. I wasn't trying to make a statement. I just didn't want to sign up for tons of surgeries. So kind of, you know, found, and then I, the, the photos that I took, that was just me kind of trying to come to terms with. who I was at that moment, I, you know, my body looked different. I was bald and I just felt the need to kind of capture that place in my life, uh, so that I wouldn't forget it. And yeah, I, I love those images. I love them.

K

Yeah. There, there's a lot of joy. No. Yeah. So when you said in the title of your book, Hold the Shame, it is such a powerful, powerful statement. Is that in reference, when you think about your own story, is that in reference to your experience with your medical practitioners at all or the social community? Where, where did the shame come from in your story?

E

It was really an observation, I think more than anything. I was pretty comfortable with the idea of going flat. Um, I was pretty firm in my decision was pleased when my surgeon, like when I took my bandages off and I saw my scars. I was never really in love with my boobs quite honestly.

I was a D cup before. Even if I had had reconstruction, I probably would have gone a lot smaller. I was probably more ashamed of myself and more hard on myself before I had breast cancer. Then, as I went through this, I started seeing women that were going through the breast cancer journey were encouraged to be ashamed of themselves. It's almost like the dialogue is, Oh, you've had a mastectomy? Well, don't talk about it, and hide it away.

Or, you've decided to go flat? Well, that's like, you're now disfigured, so let's, you know, hide that. And I just, that bothered me to no end, and then I see so many women expressing shame, shamed for their decisions. I fight against my own sort of currents, which kind of might pull me back into sort of those feelings and say, no, no, no, I owe it to the world to kind of be a lot more, public and, you know, within my own sort of comfort zone.

But, um, it's important to me that I'm not ashamed and that I not, um, you know, kind of encourage that behavior anymore. So that's really where it came from was, you know what, we should not be ashamed of any of the choices that we make. Um, as women, we should never be ashamed of ourselves in any form.

K

Yeah. Definitely. I remember reading that your surgeon was concerned about your husband's opinion of what you were deciding to do in surgery.

E

Yeah, he, he was, um, mean, my husband was present for all the conversations. Um, it was, it was a fairly light comment. Um, I think that's, that's even more so, I mean, there are surgeons that explicitly turn away from their, from the woman, the patient and ask the man's opinion. Um, that wouldn't have flown very well. Um, but, and I was pretty in no uncertain terms, made sure it was communicated to my husband that this was my body decision and that he didn't, you know, if he supported me, then he would support me sort of thing. So, um, but yeah, I mean, I think my surgeon was like, he was just a little taken aback. I think when I proposed the idea of going flat and I remember him sort of saying right at the outset, Cause I had like shed 10 pounds out of stress and, you know, was looking pretty lean and I remember him saying I would "look spectacular with implants."

K

(Mouth hangs open, silent)

E

So it was just kind of, it was kind of a, it was just a guy thing, you know? but you know what, in the, in the long run he was actually really, really good to deal with and was very, very supportive and understanding of, of my decision and I think helped both my husband and I kind of navigate our way .

You know, just, just, just through this, whole change. My husband's not a guy who, he's, he's not a guy who deals with change well. At any, in any form. Like, going on a holiday is, it freaks him out. Like, he doesn't like change. And so, having to deal with, uh, you know, the woman that he's lived with and slept alongside for, you for 30 years look different.

That's been a really, it's been, it's been a really challenging thing for him. he's, you know, he's continues to work on it. So it's just, yeah, it's, it's a lot, it's a lot, you know, and then you add into that just the fear and the emotional response of, you know, I was never supposed to get sick. Like that's not supposed to happen in the family.

I don't think there's nearly enough supports for the guys out there, which is also why I wrote the book. Like I love to hear when women who've read it go, I've just given it to my husband to read. That makes me feel really happy. because the guys are really lost and they, you know, we, we find each other, they won't talk to anybody. So, um, you know, I, I'm, that makes me so happy. Oh

K

I'm glad that you included your husband in your story. I've written my story down. I don't know yet if I'll publish it or if I'll just hand it down to my nieces and my own folk, but I was really reluctant to talk about my husband because it was such a tender time for him. It was a time of such emotional vulnerability.

I really appreciated your including your husband's response, especially you talked about his response to your first photo shoot after you went flat. Um, and that he really struggled with the fact that there were some very physical, um, objects in the world, you know, out there that could be, could be spread around about you. And that was a very private thing to him for your body to be photographed in this intimate way without, you know, a top on,

E

He was, he knew I was, he knew I was doing the photo shoot. Um, if he quite knew that how, you know, raw it would be. Um, um, I think where, it got a little, where he got mad at me, was, uh, when he found out that the photos ended up in People Magazine.

K

Whoa, I didn't realize that. Yeah. Okay. So what was his response?

E

Uh, he got pretty mad. Anyways, he got over it. He got over it. I, I, I argue. I'm like, look, I, I'm so I'm topless in People Magazine. I'm like, I don't have a top. Anyways.

I think it's been interesting as I've kind of gone through this and I've gotten out there and it's interesting when you know you'll be out somewhere and somebody will come up to you and they're just like I want to thank you so much or you made a real difference or whatever and if he's present for that it's like all of a sudden he kind of sees it from a different from the outside in and I think it's a little easier for him once he kind of and you know his initial reaction is just to kind of lose loses not a little bit about it but he He eventually kind of comes around and realizes where I'm coming from with this.

It's just, it's just hard. It's just, it's just not his nature. He's an incredibly private person. Um, but again, it makes me so determined when I do get, you know, women saying, thank you so much for being open and or I made my decision to go flat because I saw you and you inspired me. Um, you know, that, I mean, as I say, I, you, you do you, but you know, if I can help somebody along on that journey, then that's really cool.

Yeah. I just got really lucky. My surgeon did an extraordinary job, extraordinary job with, with, uh, with my incisions. I am so perfectly flat. There's not a dimple or a or anything. And so, you know, I really drew the lucky card.

K

Yeah. I was really impressed. So those photos in your first shoot when you were totally bald, how far out from surgery were you?

E

A month and a half.

K

Oh my gosh. Your even your incisions looked beautiful. Wow.

E

It was done on May 31st. those photos were done mid, mid August.

K

Yeah. That surgeon is an artist. That's amazing.

E

He's a general surgeon, too. And I think he studied under her. So you only had one surgeon, here in Canada, of course, you don't, it's not like in the U. S. where it's privatized and you can kind of shop your things around a little bit. You know, you kind of are just assigned, a surgeon. Here, in, in the Waterloo region where I live, it's a smaller community, just, uh, about 50 miles outside of Toronto. And so, um, you know, obviously our health care, our hospital system is much smaller, and I think there's maybe three, surgeons who do breast surgery here in town. And yeah, there's not that many. And one of them just recently went on maternity leave, so there's even less, you know, so.

K

Okay, and you said that you had chest wall reconstruction. So does that mean that your surgeon took some of your extra skin and used it for padding in your hollow spot?

E

No. I didn't even have hollow spots. I just, uh, you know, I, I've always worked out. So I've got some good, good, nicely

K

Pecs?

E

Yeah, he didn't have to do any fat grafting or anything like that. It was just, he used stitching, like the stitching he used was Oncoplastic. So plastic surgery type stitching.

So it was all folded under. He didn't use any staples. Yeah, and you know, and the other neat thing is, I had surgery at 2 o'clock in the afternoon and I was home here in the house by 7. 30 in the evening. Yeah, so he did a nice job and he did it fast. Because I was home by 4:30.

K

Wow, that's great. Yeah, that's true of me too with my Goldilocks. People think that Goldilocks is more involved, but it's maybe an hour more total in, in the OR. It's not that much more involved. Oh, good for you, Ellen. I'm, for our viewers on YouTube, I will definitely get some photos of you to put up so that people can see just how beautiful your incisions were even just, oh my goodness, less than two months out of surgery. That's crazy. I can't believe that.

E

Yeah, yeah, yeah. Yeah, he did a really good job. I just did a flat fashion show with the flat out love folk, um, down in New York. And my daughter went with me and I ended up sort of pulling an outfit or I was assigned an outfit that was actually covered up. I wasn't topless. I would have been fine with going topless in the fashion show if that had happened, but it made my daughter a little more comfortable that I was covered up and so, you know, I just, I try not to be so extreme that I make my family upset about it. So it's kind of a fine line between being there

K

Well, I feel like for me, it's a part of my healing. And so I have to get it out of my system or into my system. However you look at it. It's a season. I don't think I'll be healing forever from this trauma, but for now it's a part of my self expression, my new identity, my body love, my self acceptance.

E

It is really, it is a healing thing and, you know, I don't know about you, but I'm, you know, two, not quite two years out from my surgery and it's interesting now, like I look at myself in the mirror and maybe my husband looks at me and sees me differently, but don't even notice anymore.

Like it's, it just, it is amazing how it just becomes sort of part of your physical being and you get to a place like, the body acceptance actually for me came quite quickly. Yeah, it was just more the trauma of going through this, you know, I think it's more, um, some of the other physical side effects that I've been struggling with, you know, just gut healing and emotional healing and that trying to compartmentalize you know, we've already had the shoe drop once and we just sort of are waiting for it to happen again and we get into this community and unfortunately, people do. Get sick and die, you know, uh, and that's anytime that happens and it's someone that you know, that's also hard. So unfair.

K

Yeah, definitely. You talked about your daughter. Tell me about how her response was initially to your diagnosis.

E

So yeah, so she was 23? 22, she's a 2000 baby, so she just turned 24. Uh, so she was 22 when I was diagnosed and, you know, I think, you know, um, she was living, she wasn't living at home at the time. She was in college and she was in Toronto. and she had just after I was diagnosed, she fell in love for the first time and she had a boyfriend. So she wasn't home a lot. Um, yeah. When I first told her, um, she shared with me afterward, she, went for a big walk with her roommate and just had a massive cry. Because I think that the first instinct was, well, this isn't happening, you know, my mom doesn't have cancer. Or, you know, she was so convinced that it was going to be fine when I told her I'd found the lump.

And when I told her it was actually cancer, and I remember her asking me, she said, are you going to lose your hair? Because, you know, 22 year olds, it's all about the hair. And I said, yeah, I probably am. Um, and it wasn't until a year later and she had moved back home and she and I were sitting talking and she said, I was really angry with you. And I think my husband was too, um, and I said, that's interesting. I said, tell me more, like, why would you be angry at, you know, the lady that has breast cancer? Why am I the subject of anger? she just said, because you're not supposed to be the one that's weak here. Like you're not supposed to be the one that's sick. You're mom. what I do find in my family is, I said, we are, I said, we're like a teeter totter. So when I'm up, everybody's up. When I'm down, everybody's down. We don't balance each other out very well. So the whole mobile kind of went wonky when I fell apart. And, and, and, you know, and she just said like, pull it together, mom. Like she just couldn't understand why I couldn't kind of get it together. I just don't think really anybody that hasn't had cancer can really, appreciate the immensity of the emotions and the fear that you feel. So yeah, so I thought it was really courageous of her to share that with me. And she said she, you know, really thought a lot about it. And she said, you know what, I understand now that I was angry at the circumstance and angry at the fact you got cancer, not at you, but that wasn't how it computed at the time.

K

So had she not seen you in a position of weakness like that before?

E

Um, no.

Yeah. I'm kind of the I'm the rudder of the ship around here, and uh, and she had a really hard time with me when I lost my hair. She had a really hard time. She couldn't, she couldn't see me bald. She just, I had five wigs, and so I used to wear the wigs around her, and I remember her boyfriend at the time was a very tall guy, he was like six foot five, and I remember being in the front hall one time and having, he wanted to see, and she didn't want to see, so he stood in front of me, so that he kind of shielded her, and then I took my or wing off at the time so he could see my bald head. But yeah, she didn't want to see it.

K

I remember that you shared the progression of your hair growing out on Instagram, and you were always just really candid and real about it. Just the awkwardness of the different stages, and I really appreciated that.

E

I think it's kind of, you know, I still do it. I still do, you know, who wore it better. I just, I just, I think I'm going through or I just had, I just had it trimmed. So it's, it's a little shorter now, but I was going through the 1970s rockstar phase. I mean, literally I could take a picture myself compared to like Robert plant and had the identical haircut.

So, you know, I kind of, know, so those are the things that I search. When I was going to lose my hair, I was like, what does it look like? And what does it grow back like? And everybody's thinking these questions and the different stages of regrowth and how to style it at different stages and everything else.

And of course, mine's come in very, very curly. So that's. kind of a different thing too. So I just, you know, if I can present that in a real way and a kind of a human way and yeah, yeah. So I'm always perpetually snapping pictures of myself just out of bed that's like standing up on end of crazy things.

But yeah, I can make people smile. That's always a good thing.

K

Yeah, you do. You're good at that. Now, I wanted to ask you a little bit about your son. You said in the book that your son was really brave and kind of asked you to assess the severity of your situation and, and tell him. Just how bad it was.

E

Yeah.

K

Tell us that story

E

Again, you know, both the kids were kind of they're very different people. Um, and my son is a very introverted, very, uh, cerebral kind of guy. And so with him, you know, it was the same thing. He was like, I think it was, you know, kind of them working through this place of disbelief.

I remember we went for this walk. There's a country inn not far from where we live. And it was early spring, so it was still kind of snowy. And he is a dog, and we took our, our two dogs. But for walk together and I remember him saying, you know, like, well, maybe it's not, you know, like that was kind of the sort of the bargaining thing, right?

And then there were little milestones along the way. So, um, they have a little, well, he's now, he's now two. Um, so the little grandson who was born the night, the night before I finished chemo. I remember, you know, my last, my last, uh, trip to the chemo suite and being like super proud and showing these little, you know, brand new newborn pictures on and I have a photo of he and I at Christmas time that year and I'm holding him and we're both bald and it's at some point he's going to understand, you know, and he'll be able to, I'll be able to explain to him, you know, what was going on in that photo.

So. Um, yeah, so it's been kind of a really interesting part of the journey, you know, like finding out that they were pregnant and I had just found my lump. And so that whole sort of journey, kind of, of having the grandbaby and, and then becoming parents is kind of really parallel

K

Well, I want to wrap up just by talking about the blog and some of your favorite entries and some of the authors that you've had come on and what they've had to say

E

So there's one, she's also a functional health practitioner, uh, also a flattie, and she reached out, and she wrote a piece on sex and intimacy, which is such a big thing, which no one, nobody talked to me about it. I don't know about you, but. It, it's really poorly discussed and communicated, what's going to happen to your body. And there's, you know, as women are diagnosed at a younger and younger age, it's just such a relevant topic. Um, and a woman that I know who was reading the blog reached out to me on Instagram and I shared this, this feedback with the lady who wrote it, but Tracy, but she said, want to thank you for that piece that I felt seen for the first time.

And I thought, wow. Um, you know, and then I've had women want to share their stories. So we had one young lady out of the DC area who was pregnant when she was diagnosed with breast cancer and having to go through, I mean, just imagine, you know, being scared out of your mind let alone your unborn child and having to go through that experience. And then, uh, another young lady, uh, she had several losses of, you know, uh, in her, in her fertility journey, uh, has a child now and is awaiting the birth of a surrogate. Um, so, you know, just those are very real. Those are not my experiences because I'm, I'm almost 60.

So, you know, having those, you know, stories and being able to, and I think it's cathartic for them. It's, it's just, it's really, I just love it. I just love. And I would, you know, I, I, I just invite anybody that wants to share, share their stories or is a gain their wisdom and sort of looking at it again through all these different lenses, the work you're doing around nutrition is so important, yeah, it's, it's kind of taking on a little bit and I love that I'm getting global response. It's really cool. One of my favorite things to do is I see on my, um, my analytics now I can see. So, where in the world people are accessing this website and it's all just organic at this point. But, yeah, I've got, like, people in Australia and Iceland and it's just, it's really cool.

K

Oh, that's great. I'm so glad that I can help get the word out that you are willing to partner with folks, even folks that are not professionals, but who just want to share their insight.

E

That's, you know, always an option that's available and I always am there as an editor for people. So I'm just, I just, just get your raw ideas down, me a voice memo. I'll, you know, turn it into a transcript and the important thing is that people shouldn't feel that, you know, their ability to write or not write, it shouldn't be a barrier to them participating.

K

Awesome. Yeah, you've got all the technical skills to make things work that way. So that's great. Well, yeah, I'm so glad to help you get the word out about that. And I know you have a lot of stories to share that you have shared on other podcasts about your AI tool. And I will definitely link to those podcast interviews in the show notes so that folks can learn that story. I know you've already talked about it a lot with other, other podcast hosts and other venues, but that's a fascinating story that just blows my mind.

E

I mean, you know, the big thing to know about Ask Ellen, who's, you know, she's sort of part of this blog and part of the website and everything else is, you know, really the, the thing is that people need to know is she's, she's non medical. So she's really there to be that friend to hold your hand at two o'clock in the morning. She's always going to be gracious and kind in her responses. She is me, like you could ask her a question to me a question and the answers are almost going to be identical because she really truly was recreated out of sort of my brain and she's private. So we don't ask for registration or collect any data at all.

I have no idea who's, who's talking to her at any point unless somebody raises their hand and tells me that they're using her. Um, and the reason for that is that we wanted it to be something that was just a really safe space where I always say she's like the Catholic confessional, except there's a priest on the other side as well, to her, you can rage at her. You can ask her the most inappropriate things you want. She's not there for just the patient, but she's there for those family members. for the friends who are like, you know, what do I say? What do I do? How do I behave? co workers and, uh, and then she's always, she will always be free. So that was an agreement that I made with the team that built her for me. The technical team was that we would never, ever want to charge someone to use her. So it's not like for 9. 99 you're going to get to talk to my bot. That's just not going to happen. So I'll find other ways to, you know, Support what we're doing, whether it's through sponsorships or donations ,

K

And for folks who are as far out of the AI realm as I am, just the basic question is, is she an audible spoken interaction?

E

No, not yet

K

Is it written? 

E

Written at this point. It's text based at this point. Um, could she be does the technology exist to be voice? Yes. We just haven't had. Anybody, you know, demand it yet. But yeah, the technology is there. So it would be strange because it could be my voice

K

It should be!

E

every language like dialects and Bulgarian and like, it's going to be and I remember telling my husband that and I said, you know what? I said, if I die, you can go talk to me. And he's like, I am unplugging that thing because he's had enough talking to me for 30 years. He was kidding.

K

Well, thanks, Ellen. Thanks for bringing your sense of humor and levity to our community. I really appreciate it.

E

Its my great pleasure. It's, you know, life's hard enough. I've always looked at things through the glass half, you know, the glass half full lens. And, so even with breast cancer, you know, I, I don't know about you, but. Like I, I mean, obviously it was like absolutely devastating the first four weeks that I was diagnosed. It was just like a mess, but now I actually look back on it with a great deal of gratitude. Like, I'm still processing stuff, but its brought the most incredible people into my world, incredible experiences. Like, you know, and so, you know, for that, I'm, I'm really grateful. It's too bad I muse about this, but it's too bad that sometimes we have to go through something really devastating. devastating and scary to kind of really start to appreciate how wonderful things are.

K

well, thanks for taking time to meet with me and my listeners today. We will put some shots up on on the YouTube version and on my Instagram at @a.breast.cancer.diary. What are your handles on Instagram and ,

the breast cancer version of me is, is also the same as my book. So it's called @flatplease. So you can follow me there. And, uh, it's a really active and engaged community. Uh, and then I'm @ellynjane1 is my, is my other handle and I'm also on LinkedIn if people want to connect with me professionally as well.

K

And where, what is the website for AskEllyn?

E

It's askellyn. So Ellen is spelled E L L Y N. Thanks to my parents. So it's, it's askELLYN.ai
And there's tons of information up there and it's only going to continue to grow.

K

And that's the blog, too?

E

That's the same web address for the blog. Like when you go to the website, the idea is to kind of bring it all together. Um, you know, I'm starting to do speaking engagements as well. And then the book, you can actually access the, you know, to purchase the book on Amazon, you can purchase it from the website as well.

K

Well, thanks for all of your contributions to our community.

E

Aww, likewise!

My new friend Lori is an amazing advocate for the power of exercise oncology and she's a wonderful hostess and educator here in the Northwest for those who want to try dragonboat paddling. As a 17 year survivor of breast cancer, she's met a lot of other breast cancer patients and her insights are so clear around one big value: just keep moving. I'm looking forward to having her back for a part two discussion. This was not enough for me! 

Don't forget to rate and review the show and if you want to enter for a prize for doing so, email a screenshot of your review to me at kathleenmoss@protonmail.com

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Transcript:

My guest today is Lori Godfrey, another local breast cancer survivor in my own community. She lives in Banks, Oregon, and she is retired from her role as senior vice president at KeyBank. I wanted to talk to Lori today about her experience on a team of dragon boat paddlers called the Rose City Rockets.

She is a breast cancer survivor with a history of a diagnosis of stage 3B. Ductal breast cancer at age 49 in 2008, and she has not had a recurrence since. Welcome, Lori.

L:

Oh, thank you so much for having me today. Really enjoy it, being here today.

K:

Yeah, and for those of you who just watched my YouTube version of the interview with Danielle in the last couple of episodes, Lori is featured in that, in those gorgeous photos that we had as the montage in the background. So you might recognize her from that. So Lori, tell me about your experience joining this local Dragonboat team and what that's been like. How did you find them? How did you find out about them? What has that been like for you?

L:

My favorite subject, so I'm glad to be able to talk about it today. So the Rose City Rockets are an all cancer dragon boat team that was established just last year, officially in 2023, but we were on the water for the first time in 2024. I'm actually the founder, not only the founder, but the head coach for. Rose City Rockets. I started dragon boating with an all breast cancer team 14 years ago. And that's the Pink Phoenix dragon boat team that's also located here in Portland. They were the first all cancer, excuse me, all breast cancer team in the US. They were the second to be established globally. And that started a great big trend of women getting on boats for the first time in their lives, which was really my experience. I met Pink Phoenix, as I said, so many years ago, here in Portland at a Susan G. Komen walk. And they had a booth, I went up to talk with them, and within the week I was on the boat for the first time with them. That started a great, um, really a lifelong relationship. change for me. Um, I had been an athlete my entire life and was really felt very sidelined by my breast cancer. And that experience alone was what, and has kept me going in dragon boating, is that knowledge that I'm a lifetime learner, I'm a lifetime athlete, I'm looking for things that I can do. Those that have had a breast cancer diagnosis some 20 plus years ago given different experiences. information than women today. Previously, they were, uh, all concerned and still are concerned about lymphedema. So women that have breast cancer may have massive, uh, surgeries, obviously a mastectomy being a primary one. And when they do that kind of surgery, you know, you have these scars and these scar tissues that are there afterwards. And they're very difficult to break through and the lymphatic system starts to, um, get compromised, obviously. And you start, you can get lymphedema. So women were told, don't do repetition, don't do repetitive, uh, repetitive motions and no more vacuuming, no more tennis, no more golf.

So some of those sports that women would be able to do for a lifetime were no longer. available to them. So, uh, Dr. Don McKenzie, who is out of Vancouver, B. C., um, started a clinical trial, and his clinical trial was to establish and determine if women that did a repetitive motion, such as in paddling, uh, if they would have lymphedema, if they would have a recurrence or an episode or a flare of lymphedema. So, they pulled together these women, approximately 24 of them, to be in that first clinical trial that also was a team. Dr. Don happened to be a paddler And so he trained those women to be in a competition, had them on the water. They competed. He gathered the information that he needed and then when they were finished, attempted to disband them.

And they refused. Basically, they were having the time of their lives and they said, no, we're not going to go. Thank you very much. So, that first breast cancer team, uh, called “Breast in the Boat” and they're in Canada, in Vancouver, BC. And there's lots of that have found breast cancer, excuse me, um, paddling through breast cancer survivorship through, uh, just that support group that's there.

So that's how I started. I began as a local paddler and from there I was, within a couple of years, became what's known as a pickup paddler and a utility paddler and I started paddling with other teams around the area and then regionally and then one thing led to the next and I realized that Dragon Boating wasn't just happening in Portland, it was happening regionally, it was happening nationally, it was also happening globally. And that'sreally what changed my life, was those global outreach opportunities that I've been able to do via paddling. I've been able to make all these connections. with other breast cancer survivors throughout the globe that have really been life changing.

K:

That's great. So, you started doing it on, like, a weekly basis? Monthly? Or is it seasonal? How does it work?

L:

That's a great question. So I think a lot of people, especially here in Portland, if anybody's listening that knows Portland, knows the Rose Festival boats and the Rose. Yes, I was a paddler. I've done dragon boating before. And what they're referring to typically are the Rose Festival boats that take place in June and where the fleet comes in and we have it part of our Rose Festival celebration that we have here in Portland. that's all that I really knew about, um, the Rose Festival and about dragon boating happened to be that particular event. But that's not all that it is. That's a unique, very stylized boat that is not really used for anything but a festival. There are racing hulls, long canoes that we use globally. And so I started with Pink Phoenix. Uh, we paddled Monday, Wednesday, Friday. Also once, excuse me, Monday, Wednesday, Saturday mornings is Pink Phoenix schedule. And so it was three times a week. And so I just plugged into that experience three times a week. Never miss practice. Did it while I worked. Um, they work, they practice in the evenings.

You know, it would just change my whole life around to have a block of time in the evenings that I wouldn't be disturbed. And that was the greatest thing about dragon boating for me was the quiet. I was able to take my phone, put it on silence for the evening. Get on the water and only be responsible for myself and my team. And listen to the water, listen to the air, experience being outside, and being on a great big huge river, that's really pretty demanding. And then learn a new sport as well at the same time. So it was, there's a lot to take in when you first start dragon boating.

K:

And so, you started on the Willamette. Are you still on the Willamette?

L:

Yeah, still on the Willamette. So, I've paddled all over the globe, and so that's taken me on to both rivers, like our Willamette. Also, I've paddled on lakes. There are lakes all over the world that we paddle on as well. And the ocean. So there's three different ways that we get on those, each one of those. of water are, have different demands. there's a couple of different styles of the stroke that happen, coast to coast. So you learn a style of stroke, and then you get proficient at that stroke. And it's interesting, as a Dragon Boat coach Um, I've learned that, and especially as a paddler as well, that there are so many different pieces of a particular stroke. It seems like it's one motion, but it's actually broken down, I think at least 20 different pieces of that particular stroke. Just like taking a swing in a, a golf swing or a tennis swing. It looks like it's one motion, but there's a lot of different things that are taking place along the way, foot placement, head placement, uh, velocity, just all kinds of ways to change what that stroke looks like.

K:

I'm dying to ask, how does it go for a newcomer? Does it take long to learn these things?

L:

Well, it's interesting. Um, some are very quick at it and some not as quick. So being athletic is helpful. I think the people that struggle the most are those that have come from as a kayaker. So they've come to us as a kayaker and there's a particular way that you stroke as a kayaker or that you do not stroke as a paddler. So there's sometime muscle memory. It's a real thing, right? We learn a muscle, um, it has a particular memory when you go to pick up a blade in the water. You may want to do it a certain way because your muscles remember that. it takes quite a bit of time to get, to build a new muscle memory over an old one.

I think it's easier to establish a new one. So, kayakers tend to have a little bit more of a struggle. But they're comfortable on the water, so that's a positive. I learned very quickly. And, so I'll say that in fairness. I learned very quickly how to stay in time and how to stroke. And I continue to work, here I am 15 years later and I'm still working at particular pieces of my stroke. So it's never done. I worked at one element of my stroke for three seasons. every time I picked up my blade, every time I was in the water, I was working on a particular aspect and it took me three years to own that particular aspect. I know how difficult as a coach, I've learned how difficult it can be for some paddlers to pick up certain elements, but it just takes a lot of patience is what it takes.

K:

Yeah, makes sense. I'm really invested in getting more women out to do this and so I want to ask, is this like a normal sport where the coach is going to pressure you to perform at your absolute, you know, top performance and be extremely competitive or is it more about the social aspect and just being together?

L:

That's a great question. I think we get both in every, every time we're on the water. I get the social aspect, which is really not why I came to paddling. I came to paddling for the physical being. I wanted to do something and it really intrigued me that it was, had a breast cancer wrapper, but it was the sport at the gut of it. For me, that's really what it still remains is it's the sport first and then all this other stuff that comes with it. What comes with it is. It's simply the nice casual conversation I have with a woman that's going to be my bench mate that day, that may sit with me, that walks down the gangplank to get on the boat. We hug like crazy. We cry like crazy sometimes when somebody has difficult news. we share in the good news and we share in the bad news with each other. Um, the new trend that's happening across the globe now is a new trend which is the all cancer paddler. And so breast cancer paddlers have been able to be on the water for so long, for almost 30 years. Many times when I've come off the water successful as a breast cancer thriver paddler, others have asked me, spectators have asked me, ooh, I want, how'd you learn to do that? I want to be a paddler. How can I be on your team? And the news we share as a breast cancer paddler is, well, good news is you don't qualify to be on our team because it has to be all breast cancer survivors. But they'll say, well, yes, but I have lymphoma or skin cancer or, uh, you know, name the number of cancers that are out there. And what about me? It was the what about me, listening to people say what about me, that encouraged me to start another team that allows for all cancer as well as for men to participate. And that's really what I'm here to recruit to today is that we would love to have more women and more men for that matter, but more women in particular that would like to join the Rose City Rockets and just enjoy the camaraderie and then learn the sport. You feel so, um, empowered. It's incredible. I, that experience I would want for anybody, no matter breast cancer or not.

K:

Yeah. So how does someone join? Do they just show up and start?

L:

You can, you can. It's better to have a mentor like myself to help you get rolling. So if they contact me, I'm happy to get them all the information that they need. But basically for Rose City Rockets, we paddle on the Willamette. We begin March, which is coming up very soon. March 11th is a Tuesday. We wait until a daylight savings has happened and kind of brighten the sky up for us in the evenings. So we're there in the evening. We meet at 5:40 PM. We have 20 minutes of warm up then we get on the boats and I'm there with you as we have other coaches as well. So it's my self. I'm an advanced United StatesDragon Boat Federation Advanced Level Two Coach. Um, there's not very many of us, um, here in the West Coast in particular. My husband's also an advanced coach. And then we have other coaches that are on our squad as well that can help, especially the new paddler, get comfortable and teach them some of the very basics. You can't be wrong. You can only be right. We find a lot of wins. Uh, that's one of the things that I get complimented about specifically. is about how I'm able to help the paddler, find that value in what I'm teaching, be able and feel comfortable enough and confident enough in trying it, and failing. Cause you aren’t always successful. Sometimes we fail at the things that we're trying, and that's okay. We can't expect, all of us cannot come to a new sport, or a new anything, and expect mastery.

K:

Absolutely, if a woman was looking at joining, let's say this coming March or, or next March, what muscle groups would she want to start working on? Would she do pull ups, push ups, tricep dips?

L:

There's a great number of exercises that we have that are specific to paddling and you've hit on most of them. So what we try to do is keep our hip flexors. Moving and flexible. So we do some great squats. We might do some hip flexor work prior. You know, some stretch, some static stretching there.

And then get into more dynamic moves. So static is you're holding a stretch. And dynamic is activity, right? For those that don't know the difference. And so if you were to start out with, exercise bands and work on simply stretching above your head, stretching behind your shoulders, getting your shoulder blades down into your, back pockets is what I call it.

So basically working on that back, working on back muscles, working on your shoulder muscles, um, lats, core um, your, your core. That's probably where you're going to go. It is a full body workout. So we're going to go literally from toes. To the head of your top of your head is going to be working when you're in the dragon boat sport So we'll work on those things.

A lot of people think I got to have strong biceps Or I have to have strong upper body, um, physical strength in order to be a good paddler. It's not true, but I will say this, over the years I have developed bigger shoulders and bigger, yeah. So I have bigger back muscles and bigger shoulders than, than the average woman probably does. And certainly from my body style when I started, I've changed. My body has changed. To, in a good way. In a positive way.

K:

So it sounds like, more like a crew kind of setup where you're actually using your legs to push when you're paddling. Okay, I didn't realize that.

L:

That's right. So we have contact. It looks like we're sitting there, but actually we have a specific way that we place our feet and we utilize pressure on the bottom of the boat to do to go forward and to go backwards. You know, so we basically are doing this rotation while we sit, we rotate out to the catch to put our blade in the water, and then we do you rotate what we put pressure in the water to pull the boat forward. And so it's basically that's what we're looking to do is how do we pull the boat forward to get to the finish line. There is a lot to do, to paddling. I would say, I would, for a new paddler, try not to get too excited about those details. let me talk about clothing. So, of the things that people like, need to be experienced in gathering together before they come down to the water.

So they're going to get physically, you don't have to be a physical specimen, a fitness specimen, you don't have to come out of the gym and be on the water. You can come to us just as you are. And then you're going to, you'll learn quickly about where your deficits are. And we can work on building those up. but everybody's got them. So don't feel like, well, mine's worse than everybody else's. It's not the case. Um, so you come to the water, dressed in layers. We use a lot of dry fit. So that's anything that you can get wet, and that can dry. So we use, um, no cotton. No cotton on the boat. I come with leggings usually that are dry fit. Everybody's got yoga pants or yoga leggings that they can start out in, and then you layer from there. So I'm going to have waterproof shoes on, or at least shoes that I can get wet. I use a Keen. Keens are very popular here in Portland. It's a hiking shoe that has water cut outs in it. They are used by most paddlers in Portland.

And you can wear anything you like. Uh, waterproof shoes have become more, uh, tennis shoes have become more, available So people are using those now, too. And then from there, we're using a layer, a system of coats. So it's one long sleeve shirt. That's dry fit. Then I'm going to put a light jacket on that and then something waterproof over the top.

And that's going to take me through most, most weather, most weather conditions in a hat of your choice, right? basically what you need to come on the water. Uh, we use, come with water because we need to be hydrated while we're out. we start on the, uh, practice time for Rose City Rockets. We practice from six o'clock until seven. We get off the water at seven and go home and then we'll see you again on Thursday. And then we do it again on Saturday morning. 9 40 a. m. And then we're out from 10 o'clock to 11 o'clock. The nice thing there is a social aspect on Saturday mornings in particular. There's a little, restaurant called Little River Cafe that's very close to where we are, where we go out to the river center marina and it's part of one of those restaurants that's local they're very good about our paddling gear, you know, dripping all over the place and they have coffee available. Also serve a nice breakfast and it's filled with paddlers on Saturday morning.

So we have a lot of people sharing stories talking about the water and getting, you know, we recognize all kinds of other paddlers that are down there. Because we're, I've been part of that community for so long, that I know paddlers on every team, I've paddled with every team, almost, I've raced with them, um, so there's a lot of, a lot of that camaraderie that's there. It's, it's super fun.

K:

Do you think that most cities have room on a breast cancer paddleboat team at this moment in time? Like, is there room for people to join?

L:

I think they're always recruiting. There, there's a challenge, uh, with breast cancer teams, in particular. And, and it would be, hopefully it's true for our all cancer team as well. Now, all cancer, I'm saying that's our, Rose City Rockets--there's probably 50% of us that are breast cancer survivors.

Yeah. So there's only room for 20 paddlers, right. So, if I have 20 that come out that's great, but I usually have 24, right, 21. So I've got a boat, I'm always growing. So you might find a team in a particular city that's already at capacity, they're managing. They'll figure out a way to put you on a boat. The way we work it right now is that we only have, a boat sits 20 people, 20 paddlers, 2 by 2. Right, so they sit like pistons in an engine, and everybody works together as one, going down the water. Um, the Rose City Rockets are only about 14 of us that are really Rose City Rockets. Then we have supporters that are helping us from other teams. That are not, that are not all cancer survivors. They come to us and help us fill in.

Because as we continue to grow our team, we need to get on the water. So we're just reliant on other people to help us. And sometimes I have to go help a team do the same thing. Right? So it's about helping our community members, all of our paddling members, get on the water.

K:

Where would someone go? Is there like a national hub where you're looking for teams with openings?

L:

There's two of them. So the one for all cancer teams is the best resources to go out to the U. S. DBF. The United States Dragon Boat Federation has a great website out there that can show you all the breast cancer events that are taking place might be specific to breast cancer across the country. And then there's also one, a tab also for all cancer festivals that are happening. It also, there's another tab there that will show you where the teams are located across the country. I think for me, when I, as an example, if I wanted to travel to Denver, Colorado, and I want to see if there's a Dragaboat team there that I can paddle on. The first thing I might do is Breast Cancer Teams, Denver, Colorado. And I'll look for teams there, and if one shows up, I'll contact them and see if I can come and paddle with them. They're very accepting. We, again, it's a great big global community. And if somebody's traveling to a particular town, we're going to try, if they're visiting here, we're going to try to get them on a boat. Because it's, it's just fun to do. And it's part of our story, and it's how we build the community as well as our skills as paddlers. Being able to get on a crew with any team across the country or world. So that's another one way to look at it. Um, and then getting on Facebook is a great way to search.

There's so many teams. I know that people are moving away from Facebook for a thousand reasons. And it happens to be where there's a lot of information regarding dragaboating. So, can't just throw it away. That's a great site to go into and just start looking. how I would find somebody a day if I wanted to paddle in any city in the country, I would look that way first.

K:

So the keywords would be dragon boating and dragon boat team, probably?

L:

if I'm looking specifically for, that would be for any dragon boat team, and if I want to find something specific to breast cancer, I could look on the USDBF site. Or, I could look at another one, I'm going to give you another acronym, IBCPC, it's the International Breast Cancer Paddling Commission, International Breast Cancer Paddling Commission.

It's the overarching organization for all breast cancer crews globally. So it's a way to see who's building teams, what's happening in your community, what's happening in a particular part of the world that you might be interested in. I've done some outreach helping, uh, paddlers start giving a great example, a super duper story that I love. I was in Argentina with a group of women, all breast cancer survivors that I've paddled with. And that group, there was a team of us of about 10. We traveled to Argentina, we went to Nahuel, and we met, we had to put on a festival. And we trained, I think about 48 to 50 paddlers. women that were living in this very remote area, basically it's Patagonia, had learned and were learning to paddle in their kitchen chairs by themselves with a, with a broomstick. And they had never seen a boat the day that we showed up there. And it was so much fun to see these women, breast cancer survivors all, some super young, beyond young. It's incredible when you travel to other countries and see how young The women that are being diagnosed are. It's a sad fact. sure it's true here for the U.S., but you see, they're out more publicly, I think, maybe in other countries. I don't know, but I'm running into them there. Anyway, um, so they're learning to paddle with this broomstick in a chair. so we started out that way when we started training them in Nahuel in Patagonia. This is two years ago. And then got them in a boat. It was mayhem, chaos, exciting. And by the end of that day, it was a lot of tears shed and just an emotional I've never experienced anything like it. The women were so grateful. We were so proud to be able to share this sport. And at the core of it was just female energy. Just women, loving women, for the sake of loving.

It was incredible. I just ran into somebody from there just a week ago. Uh, that knew me from that experience, and we just bawled our eyes out when we saw each other. was just, you know, and unexpectedly, I didn't expect to see her, didn't expect to cry my eyes out when I saw her. It was just, I'm still carrying that around. So it's those kinds of little pockets. life that are happening through dragon boating that are incredible. That's why everybody needs to get on a boat.

K:

I have two more questions about Dragon Body before we move on. One is, for those who are in debt because of their breast cancer medical bills, how much of a cost requirement is there to join a team?

L:

It's a great question. So it costs money to travel. No question. Right. And a lot of our teams do travel. There's some of that, but it shouldn't be what stops you from getting on a team. pink Phoenix is a great example. That's local. Same thing with, um, Rose city rockets. It's true for. I can think of a number of teams that it's true for, for here in Portland, that have scholarships available, for one. Um, it's not that expensive. Our fees for the year just to paddle, that's to get on the water three times a week, is 210 for the year. Uh, you can't get a gym membership for that.

you can't get a, just a class, any one single class anywhere for that, for a year's worth of paddling three times a week. We have, we have gear, right? So you don't, we do wear a PFD, uh, paddling, uh, flotation device when we're on the water, so to make sure that we're all safe, and that's required here in our waterways. Uh, but we've got them to borrow down on the dock, so there's lots of ways you can kind of limp your way to, uh, paddling, and you wouldn't be alone.

If somebody didn't have the money. wouldn't be alone coming in there with not having a lot of equipment or not really having a lot of cash. Um, we had a paddler last season that paddled with us. Um, well actually we've had many that are on scholarship. Um, there are ways. So if somebody lets me know that they want to be a paddler, I can find a way to get them on the water. It won't be a financial burden.

To travel is another issue, but there's still lots of regional paddling that can be done. You know, where you carpool with somebody, that you share a room with somebody, you know, that you just do a lot of cost sharing and cost savings in that way. And you'll be surprised how, how inexpensive it can be to get to a venue. here in Portland would be Ridgefield, Washington, to Salem, Oregon, to Um, Vancouver Lake to, uh, where else can you go That's, there's several right there. You know, that people can attend.

K:

I was wondering, so I just started a local walkers team to do relays together year round, similar to what you're doing, a little bit less intensive, but one of the, so I named it walk away from breast cancer. I thought that was a clever name. And one of the gals that signed up said, um, She liked the name because she doesn't want to get together with other breast cancer survivors to talk about breast cancer. Is that kind of how your culture is? I kind of feel like it might be similar for you.

L

Very similar. And it's funny because there's a lot of resistance for women to be in a support group, right? I mean, so it's like, I don't want to get in a support group and talk about my. 3B and my, you know, and get into all the details about how many lymph nodes I had removed. While it's important, while it's important information, it is times we share that personally, one on one, when some weird thing has happened for somebody. Hey, I've got to go in and have another scan done. Something popped up on the last scan I had, I'm going in. It might be conversations like that. But the core of what we're doing. It rarely rarely comes up.

It certainly doesn't come up on the boat. Um, we paddle. That's what we do. We paddle, and our goal is to paddle like every, if you will, like bodied, you know, or fully capable body. So that's one of the things that does happen, is that, know, we have the restrictions. I have no pectoral muscle on my right side. All removed surgically. I have nothing. How am I paddling? Well, I'm paddling because my other muscles are compensating. But I have a lot of scar tissue, so I've got a lot of issues that happen for me as a paddler that I have to work through. But that's just what happens. I may need a seasoned paddler or a seasoned breast cancer dragon boat paddler to help me understand what I need to do to accomplish what I'm trying to accomplish, whatever that task is. And so it might be nice to be able to talk to somebody about my specific problem, but it is not the core reason we're together. So, talking about the walking away from and not walking into a support group. I think that's really it. I think that if we weren't able to say that, I don't think we'd have the women that we do on our team. I can only think, honestly, of about three or four women that I know that are there for support first and paddling second. And that's saying something. I know hundreds of women that paddle.

K:

Okay, so it is available if you want to talk about what's going on with your, your current situation, but people aren't dwelling on it. They're not dwelling in the past. They're walking through it and walking away from it kind of.

L:

Yeah. And before we go off dragon boating, I wanted to say, you know, we were talking about recurrence was one of the things I wanted to bring up… So Dr. Don McKenzie, I'm going to circle back to him for a second. Right. So the science that he had about, yes, you don't get lymphedema when you paddle, went beyond that. He's continued to do research in these past 30 years, focused on breast cancer survivors specific to dragon boating. And he's found out all kinds of things, but one of the things that's happened with him is that he's determined, and there's science out, you can find these, I think these are published papers at this point, where you're, he's through a prescription is suggesting weightlifting while you're doing chemo. So actively getting very physical while you're doing chemo will keep, reduce your symptoms through chemo and also may reduce your chance of recurrence. This is where the science really becomes important is that it's not just, us talking about it and saying that, yes, this happened to me. we're really talking about scientific evidence where I paddle and I am limiting opportunity for recurrence.

I had a stage 3B aggressive cancer diagnosis. I had a 20 percent chance of survivability. I had only one wish when I had my diagnosis, which was to see my granddaughter. Which I had none. My daughter wasn't even, you know, not in love, didn't have a relationship. And I had all these things that I wanted to see and dreamed about having. It was just a prayer. All those things have come true because I've been able to survive and thrive over these last decade and a half. I’m telling you, it's because of the nutrition, because of the "Walking away from cancer" that you're talking about. And dragon boating being on the water. So there's a lot of, a lot of data that's out there that show you that you can re reduce your recurrence.

Can you do it with other sports? Maybe. I don't know but I can tell you that it's proven in dragon boating. So they've got showing that breast cancer survivors can have, you know, can reduce their recurrence. Blood cancers are also there as well as colon and prostate. They have data on all of those particular types of cancer as regarding dragon boating. It's pretty exciting.

K:

Yeah. Absolutely. And I'm, and that's why I'm moving in that direction with the podcast. I wanna learn more and more about different ways to do this with this exercise oncology concept. It's proven with walking too. So that's why I'm doing the walking and the relay teams myself.

L:

I think walking is such a key piece when new paddlers are with me or I'm getting ready to get back into full blown season, which starts again in March. I did my first half marathon and it was really wasn't so much about the half marathon It was about training for dragon boating. So I always had everything I do always seems to be geared towards being better physically so that I can do better as a dragon boater.

K:

That's great. It's very inspiring.

L:

I'm aging, right? And so that's the other thing that I, I coach an older team, a master's team, and there are women and men that are , 60 to 90 that are paddling. And what I, what I see about myself and what I see about senior citizens is that they change their, their stride as they get older. And they're basically taking their strides like this and they start to widen it out because they're widening their stance so that they don't fall. Right? So it's all about. Stability and stability exercises and there's quite a bit of that that goes on in dragon boating exercise that's very helpful that can help me long term for my whole life. So, stability, functional exercise, all of that is part of this can be achieved through this dragon boat sport.

K:

Okay. And you mentioned the full, full blown season. It starts in March. Does it end in the fall and take, take a break for the winter?

L:

To the end of October. So, for here, it's tough to be on the water. Unless you've got light. And so we try to as soon as this daylight savings happens on either end of the spring or fall, we get off the water. Not to say that we don't paddle in the evening, late in the evening. 'cause we do, we still go out for all kinds of reasons in the dark. Um, we went out for Christmas ships this year and did we do some fun things like that? We were out for light up the night with the lymphoma organization, a dragon boat lit up on the water while the pa, the walkers went across the bridge. It was, it was quite something quite moving.

K:

Beautiful. Oh, it sounds like such a great community. It's very attractive.

L:

It has a lot to offer. All ages. All ages. We've got a new Dragon Boat member that's just joining. Uh, she's in her 30s. Just turning 30. Um, you talked to our friend Danyel that you mentioned. And so, Danyel's young as well. It's a big, wide group of women. interesting to have friends. I've got friends that are in their 80s. I have friends that are in their 30s. I don't know how else I would have such a broad variety of women if it wasn't for this.

K:

Yeah. Well, I wanna talk a little bit about some lessons you've learned in your own personal story and what you would, the kinds of advice that you would give to a, a new breast cancer patient because of what you've been through. You've got 17 years of perspective and experience at this point. What do you tell folks when they're struggling?

L:

At the beginning? Well, I think it is a struggle at the beginning. I remember very easily, and I can just, in a second, can get there. Remember Dr. Love's giant book that she wrote on breast cancer? Where I was working, there was a bookstore right across the street. And so on my lunch, I would go over right after my diagnosis.

I didn't have my prognosis yet, but I knew I had breast cancer. I went over to the bookstore on my lunch, and I would open that book, and I started to read it. And I couldn't get all the way through it because I started to get into details that I couldn't fathom. Having a mastectomy, having, losing my hair, I mean some of those things. I couldn't fathom it. And so I'd have to close the book and I'd go the next day. I'd start again at that same spot and move forward. I mean it's just you can only get so much information into your soul time.

So all of it just seems like drinking out of a fire hose initially. And then finally you kind of wake up to something you know you've probably heard before. But now it's important to you, right? You, you don't really know what it is. You dismiss it and now it's, now it's here and it's real for you. Um, our walk through breast cancer is different for every woman. You know, some women that have a stage one, when they talk to a woman that's got breast cancer, you know, they make aplogies and excuses, and I'm sorry’s that, “I'm sorry to talk about my stage one cancer. When you've got stage three.” That's kind of a silly thing. I mean, I understand when women say that, but it's really silly because you find out over time that our treatment, may be very similar in some ways between our stage 1 and stage 3B.

You may still need a mastectomy, I did need a mastectomy. Um, you may not need chemo, but I needed chemo. So, I mean, our treatment plans may be somewhat different. The women that I tend to have the most to say to are the women that are, have a similar diagnosis that I had and prognosis, which I did meet women that were stage 3B that were, ER, PR positive, HER2 positive, like I was. There happened to be a drug that was relatively new, Herceptin, that had only been available just in a few short years prior to my diagnosis that I was able to take. So, you take all of these elements, modern medicine, all of what it had to offer me, so mastectomy, full radiation, you know, as many radiation treatments as I had, so I had the full spectrum of 34 treatments, it's the max you can have of those, I had a double mastectomy, I had chemo for a year because I had Herceptin infusions for a year after my primary care or my primary, um, chemo. Then I took oral medication for the next 10 years after that to, um, several different ones that I took that finally were for tumor suppression. One of the things that I think was unique for me is I did everything that was offered to me and I did all the Eastern medicine as well.

So I did Reiki. I did acupuncture. I Had a prayer circle that take, you know took care of me worldwide I had a prayer blanket that had been created for me during my treatment that I wore as I slept So, I mean I did everything Um, and probably would have picked up a rabbit's foot had there been one available. I mean, you're just doing everything you can to survive. And that's what I did all of those things and I kind of inched my way out of treatment, you know, did all the things.

Is it fun to go through treatment? It isn't. But I did meet women in that time of my life that had the same prognosis that chose not to do treatment. Chose not to do Herceptin. Chose not to do treatment. Chose not to do Herceptin because they were afraid of a side effect. And they ended up dying within a few months after we met. And so super sad. It. was a fear about something happening with her heart that stopped this one particular woman.

My same age, my same prognosis, everything. And literally, in my, the way I look at it, kind of willed herself to death. She said, I'm out. I don't want this. I don't want to be in this treatment. It was too much for her. So, I think that. And she had a good, you know, she had family support. I don't know why her walk was so different than mine, um, but it was.

And so I say to women, do the treatment that's suggested. Do all of it. In my 10 years of treatment? the times that I was dragon boating and super sore from all the work I was doing. My joints ached, my bones ached, from the treatment, you know, from the oral medications that I was taking. But I did it anyway. But I took it anyway. I soak in Epsom salts, I take aspirin or I take Tylenol or some other thing before I get on the water. After I get on the water. Amino acids before and after I work out because it reduces my muscle pain. You know, there's ways that you manage through this. Um, it does take some gurus, you know, to help you figure out how to do it. It's nice, but it's available online too. You know, breastcancer.org, I don't know if you're familiar with that organization.

K:

Yep. They have a podcast too.

L:

Yeah, and, and so I listened to that, especially late at night when everybody was in bed. And I had nobody to talk to and I would wake up with that fear or that new, that kind of question that I had. Um, You know, all kinds of questions that come up about treatment. Um, how are you gonna feel? Nausea, can I work all, you know? What about, uh, short-term disability? Those kinds of questions can be asked answered. looking at breastcancer.org, is this a great site for that? So in the middle of the night, I would get out there and search for something and get an answer.

It was a great forum for that reason, you know, if women hadn't got out there before me and been willing to put their life stories out on. That location or be in a podcast like this. How are we going to get this information?

K:

Yeah. Did you ever finish Dr. Love's book?

L:

I did.

K:

It's a big one.

L

It's a big one. It's a big one. I finally bought my own copy and had it. You know, it's, uh, it's one of those things. A hard copy is something that's interesting because all of it's available to us online today. So you don't really need a hard copy of anything, really. Uh, but I did have a hard copy and I had that with me and visible for a while.

And then I got rid of it because it was some kind of a reminder that I didn't love. But I'll tell you, want to know how I, what really saved my life? I believe this Well, so when I had chemo, I had been reading and studying about, I don't know if you're familiar with this science, this Japanese writer that did the science about what happens to water...

K:

Yeah. Negative ions.

L:

Yeah, negative or positive. So I've been doing a lot of reading about that and I thought to myself, okay, I've got all these chemicals that are in this chemo bag that I'm going to be infused with. And a lot of women are saying, I don't, you know, that's a chemical. That's, uh, that's death. That's the devil.

It's called all kinds of things. And, you know, it's going to get into my body and they have all these negatives about that chemo. So what I did is I changed the structure of what was there by writing on the outside of the bag. And I wrote love on the outside of that chemo bag every time I had an infusion.

So instead of having an infusion of something that could kill me, even though that was the point where I was to kill the cancer cells, I was being infused with love. And. I think my mindset around that infusion really mattered. I had a friend that was in treatment, in recurrence, desperate and she was in her late stage and it was funny, great girl, 34 years old, very young, not going to survive, right?

But there she is, struggling to do it. And she was still doing treatments and could do her, even do, take her chemo bag off site and do it. She was something else. But anyway, I told her about that. I said, you need to put love on there. So whatever's important, you put it on there. Whatever's important. She goes, well, what kind of stuff are you talking about?

I said, important shit. I'm talking about the important stuff. Whatever's important to you. So that's what she had written on her bag was “important shit.”

K:

Yeah. Oh, the beliefs are so important. I believe that with all my heart. Yeah. And so are the positive wishes and thoughts and prayers.

L:

Oh, my gosh, all of that. I never discount it. You know, um, I had cards that would show up at my, in my inbox, you know, from home, from third graders, from some elementary school that I didn't, never met, didn't know them, and they had written me a card. So there was a lot that goes on, being open to it. Open to any kind of treatment, open to any kind of positive feedback that you can take it.

K:

it reminds me of a story I always tell about my acupuncturist when I first started having the symptom of bloody nipple discharge, which is a common symptom for breast cancer. And they couldn't find any breast cancer when they went in to do the biopsy. I had no diagnosis, but I had still this bloody nipple discharge.

And of course, The conventional medicine oncologists were freaking out and like, what do we do? We have to do a big excisional biopsy, blah, blah, blah. But my acupuncturist wasn't freaking out at all. He said, you know what that discharge means is that your body is cleaning out those dead cancer cells that you are killing because you're so powerful.

You're so effective at getting rid of this cancer. And he was saying this with a smile on his face. He was relaxed. He wasn't in a panic. And it's such a contrast. Both are true, right? They're. They're both true, because you do need to be worried. You do need to be vigilant and keep doing the biopsies until you find it. But you also need to be proud of yourself and the fact that your body is a cancer killing machine.

L:

Yes. Yes. And then you also stay vigilant. You know, that's such a key piece of that. I had to chase my cancer down too. Um, didn't, wasn't, didn't show up, didn't show up in my breast. I went in for a regular breast cancer, um, mammogram and they saw something, it was interesting, saw something reactive. It was sent off to an expert.

He says, no, just, it's just a lymph node. So it discounted what it was that I had, right, well, what they had seen. So said it was reactive. Set it, set it aside. Six months later, I was at my physician again, my gynecologist at that time, and said, said it to her. Hey, what about this? She goes, we need to go back.

Let's go back and have it done again. Second time, still nothing. I found it myself on my ribcage, on my ribcage. There was a lump that I had about three ribs down that I happened to find in the middle of the night one night, and it And that's where it ended up sitting down and I, cause I knew that something was up and found it there and that's what ended up being, um, biopsied way down here, down my ribs. And then they, they were able to then find it because they couldn't find it. It was actually sat in the middle of my chest on my sternum, which is how it got attached to my pectoral muscle. um, and which is why I had to have the whole thing removed. And then others that, find it themselves or that mammogram that really does work. So absolutely need to have the mammograms even though our two stories were always quite a chase.

K:

Yep. Absolutely. Yep. They're both true. Anything else that you had wanted to come to share?

L:

I think that I'm excited about, um, women and men, um, that might come join us with Rose City Rockets. We need you, right? We need your enthusiasm and your, your good vibes and bring them on down there. We can take care of you no matter if you're an athlete, a retired athlete, want to be an athlete. we've got a place for you.

K:

Oh, that's great. I love the openness of it. I think part of what intimidates me about athletics is that it's like stepping into that competitive space can be really intimidating. So thank you for making it a welcoming place for people.

L:

You’re welcome. You're so welcome. That's what it takes.

K:

I will hope to see you on the river soon or on the lake, maybe when I'm paddling by in my kayak.

L:

Yeah. I'd love to see you out there and tell, we'd love to hear more about your walking group too. Sounds like a great time.

K:

Okay. Yeah. All right.

L:

Great. Thank you. Thanks for your listeners too.

My friend Danyel takes photos of breast cancer survivors in her studio on Hillsboro Oregon. In this episode she describes what that's been like, and she also talks about her recent diagnosis with stage four breast cancer.

Don't forget to rate and review the show and if you want to enter for a prize for doing so, email a screenshot of your review to me at kathleenmoss@protonmail.com

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The facebook group that Danyel and I connect on is called Oregon Flatties

The Photo experience that we referred to is Warrior Women Portraits, in Hillsboro Oregon.

Transcript:

Today's guest is my dear friend, Danyel Rogers. Danyel lives just one town away from me, and she is the founder of Warrior Women Portraits, and she's kind of a local celebrity for it.

She was diagnosed with invasive ductal cancer in 2022, stage one, and she had four rounds of chemo after that diagnosis. And in July of 2024, just recently, she was re diagnosed again with stage four, and she has triple negative breast cancer, which is going to be the main topic of our discussion for the second half of today's conversation. Welcome, Danyel.

D:

Thank you so much for having me.

K:

I wanted to ask you, first off, it was kind of a perfect setup because last week's guest, Brenda, mentioned how much she loved her experience in your studio, in your photography studio. And so first off, I wanted to ask how you were inspired to create your project, Warrior Women Portraits.

Absolutely. I knew in the very beginning when I was diagnosed, even while I was going through treatment, I wanted to give back in the breast cancer world and really just kind of lift them up. Um, I knew it needed to be something unique, something that other photographers weren't actually, offering to the women that have been diagnosed with cancer. I just wanted something really powerful, not necessarily pretty, but powerful. Because we're, we're always, you know, when we get this diagnosis, we're drafted to war, you know, we don't have a say in it. It's not like, you know, we're just getting reconstruction just for the fun of it. And so, you know, we just have no choice other than to fight. To just do what we can to stay on this, this earth as long as we can. And I wanted the experience to kind of mimic that. As I was watching, fellow flatties at the, flat retreat that was in, that April. I really noticed the, the impact that a group of women had that just knew and understood. And so that's when I knew it needed to be a group session, um, so that they could lean on each other and just have fun and connect. And the more I thought about this, the more it just kind of, it just excited me because It could be people that are 20 years out that feel so much strength that they've beat this and, you know, they've really connected to other women that just need that extra, you know, pick me up of you are strong, you are, you know, resilient, and I love showcasing that. So I really wanted it to be, regardless of what stage type, you could be stage zero. I, and I don't even care if it's a breast cancer diagnosis, cancer's cancer in my opinion, then I just get to, you know, watch it all happen and unfold.

K:

Yeah. Yeah, I remember, I was one of your first victims and was so honored, so honored for it. And I was, I'm not a girly girl. I don't wear makeup except for a little lipstick now and then. And so I was just like, when I walked in, I was like, Oh, this is going to involve so much more than I realized. There's, there's makeup, there's weaponry. You have a whole arsenal. You have lots of jewelry. Uh, it was a really cool kind of almost like a playful activity that reminded me of, of being a child again, but in a more strong, strengthening kind of way. So, and, and I love that you're open to people who don't identify with the warrior image because there's a lot of survivors that don't, like me, who are pacifists maybe and don't want to take up the, the sword or….

D:

Yes, that's, and that was my big thing too, like, aside from the name being Warrior Women, if Goddess, or whatever, whatever, like, just a beautiful human being, like, it doesn't have to have a label either. Um, and I do, like, you do not have to pick up a weapon of any nature, like, it is there for you. Um, but I want to make sure that. Women understand that you can go as grungy or as minimal like you, or just, you know, do more ethereal kind of looks. And that's all part of the journey in the studio. And we, we, we just have fun and go in and out of what, um, our visions may look like idea boards and inspiration boards for different poses, but also for different facial makeup and hair and all the different things.

K:

So we don't have to, when we show up in your studio, we don't have to have an idea of what we want. Maybe we have a color idea or a theme idea, but no one has to arrive with lots of ideas that they get They get inspired by looking at your idea boards and vision boards coming off of off of your screen.

D:

And I'm a little, I mean, it's a little for me too because, know, chemo brain is a thing and trying to be like, Oh yeah, I wanted to do that pose, but I forgot. Um, but it's been honestly really helpful for everybody in the studio from the model to me to the person that is, waiting their turn because the person waiting their turn can take a look at some of these poses and like, “Oh, we're doing this staff.”
And so it kind of pulls the other person that isn't being photographed into the into the experience, so to speak. And that allows me to be able to stay behind the camera getting the shot and things like that.

So it's really cool because it makes the experience like we're all in it together. So like the next lady, when she's done, you know, we flip it and like, Oh, I wanted to do that, that so and so did and, you know, and then it just becomes really exciting and just kind of fluid, really.

K:

Oh, yeah. And it's nice. You know, when you're posing for a camera, it's super awkward socially. But if you have your own cheering section and in the margins, you know, like it makes it so much more relaxing and fun. fun and playful. And then you can really get into it and start to kind of ad lib in a way that you wouldn't if you didn't have someone kind of laughing with you and in the bleachers.

D:

The emotions are going to be there. You're going to be like, you're going to feel silly, right? Like, if I'm having you, like, scream or growl, like, that's not your normal, like, persona, right? Um, but it, I think it works. It's amazing. But then we get the laughter right after. To just be like, Oh my gosh, look at that natural smile you captured. Um, so there's all that, the component of getting the grungy and then usually there's the funny after as well. So, um, you get it all. Heh heh heh.

K:

You have a lot of furs and I really loved my portrait that came back with the furs. Um, because it made me feel a little more connected to the earth, the basic elements. I feel like with this cancer diagnosis, I became more in touch with my mortality in a way that I was okay with.

Like I was admitting that I, I came from the earth and I'm going to return to the earth. And so it's weird. Like I used to wear a lot of. I have purples and turquoises in my wardrobe, and these days, ever since I was diagnosed, I just want the earth tones. And I think it's because I do relate so much to that sense of mortality, that healthy sense of mortality, that everything passes and we have to let go. And the earth is just a reminder of that. So I really love that you had some of those really earthy costumes too.

D:

And I'm, I'm making even more. You should see our garage right now. I went and got a bunch of realistic looking flowers—a lot to like to put in there, but they're really even feel real. I want to make some crowns, right? Of like the flowers and doing more of like an ethereal...

K:

Like a fairy theme?

D:

Yeah, I don’t know, fairy doesn't even seem to be, something that is more, more grounded into wanting more nature versus, um, weapon.

K:

Mm hmm. Yeah, and the weapons are incredible. Like your, your husband made a bow that looks like a really rustic bow and it actually pulls, and he made it out of…?

D:

It's just PVC pipe, and he's been enjoying that kind of stuff because like he did the first bow, you know, just trying it out and then he tried a different way and it didn't work as well. So then he went back and did another bow. And the one that you have recently seen in the studio, he put the markings like more of like, um, Viking markings on the bow. And he was so, um, smart and thinking about what symbols actually were to be carved on there. Um, like if, if a woman did actually look up those symbols, it would be like bravery and strength and things like that. So even though it's really the small details of things like that, where we don't want, um, to make a weapon and then have the symbol be something really inappropriate. So we do those things as well. And, uh, made a scale mail, like armor thing that he made with a bunch of ring. I don't know how he did it, but it is beautiful and heavy and gorgeous.

K:

Ooh, I want to try that one on. I'm going, I'm going into the studio for my second, second portrait session here pretty soon, so I get to try some of these lovely things on.

D:

The things, I know. And I have to keep adding new things because it keeps me inspired well. Keeps me, keeps me like thinking outside the box. And um So, yeah, I'm super excited.

K:

Well, I wanted to ask you some of your more precious memories from the studio. If you have any kind of emotional moments or, or your first client that you had, uh, coming into the studio, do you have any special memories that you can share?

D:

You know, they're all really special. It's really amazing to see how the women act when they first come in to when they leave, and that's just all of the women to be honest, because they're so excited. They've gone through the process. Um, they haven't even seen their images yet, but they're so like in it.

But the ones that don't think they're going to get into it, and then they do, those are the ones that are like, Oh my gosh, this is so funny because they're, they're really timid and you know, and it's, it's a strength, right? So if someone is just kind of mousy, you have to kind of pull the mousiness out and, and, you know, give them a little more oomph behind their image. Um. And you can see in the roll of, I say the roll of film, right? The SD card as they go through their session, you can see their expressions become more natural. It's really magical to watch. Um. And then there's the ones that are just like in it, just they're like screaming and they're growling and, and those are fun too. I actually have to have, sometimes, uh, I've let all the people know there's a bunch of businesses up where my studio is. So I've had to warn them, we're going to be doing these, these sessions, and you might hear some screaming or grunting, but I promise you, I promise you, no one is being injured. Then we do a Zoom call and they get to see the images. And watching their face is probably my all time favorite because the excitement, the It's, I think because the women have a persona, they see themselves differently, you know, they don't see themselves as a mom or a friend or a wife, you know, they, you see the strength of just them as a human. I know it's really hard for us women, or just, you know, people in general, to see a picture of themselves and not try and pick it apart. Um, but I think in the, this scenario, they're a persona of themselves. Um, kind of like, you know, Beyonce would be like to a Sasha Fierce when she goes on stage, right? You have this persona.

K:

Yeah. That reminds me of a story you told me of a mother who talked about, um, her vision for her, her print that she was going to have printed of her photo.

D:

I think you're referring to when she was like explaining how empowering this image would be on a wall of a family with young children and You know, women aren't meant to be in that big, strong mentality you know, we're softer, we're more gentle, um, but we could do really hard things. And, um, I think it's really empowering for not just the person, but their family, you know, their, their partner to see what they, they see of their partner, right?

And they don't necessarily know how to explain that to them, that they see the strength. And now they have an image to be like, see, I've been telling you, you're really strong. But this image really kind of like encompasses it. But then if you have young children, you know, what is that saying to a young little girl, right, she can be strong. She can, she can do really hard things. And my mom did hard things that I can do hard things and, um, giving them permission to feel strong. then you have the other side of little boys, you know, who are able to see their mom in a, in a way that society may not necessarily show him, show them. and so I think it's, it. The imagery that comes out of it is so much bigger than me. So much bigger than the person that is being photographed almost. That, is really the legacy that I'm hoping to leave behind, like, I had a client, um, her husband just printed a whole gallery for her walls and, and gifted it to her for Valentine's Day and, the fact that they like their images that much to put so many on their wall for them to view on a daily basis. So, it's pretty awesome and yes, it is definitely my legacy. In my first phase of life of my legacy was raising my two kids and my stepdaughter, and now it's this, these warrior sessions. Facing mortality is a little bit easier to know that I'm affecting not just these women, but their families, their young kids, their friends, you know, a lot of times their friends will see these images and get really emotional because they too, it's like seeing an image of what they would actually, that they didn't realize was something that they needed to have and that of their best friend, so yeah.

K:

Yeah. Speaking of family, I have met one of your daughters down in San Francisco. Your daughter Brianna came and helped you transport your entire studio into a hotel room when there were a hundred of us flatties assembling just over a year ago for international flat day. And she was an amazing assistant to you as you kicked out like, like so many little mini a studio sessions, one after another, after another, like how many, like 25 women got their photos taken?

D:

it ended up being 21 in the end.

K:

Wow.

D:

21 over 2 days. Now normally I do 2 warriors a day. So, and that was, you know, so yeah. I definitely needed her help, her assistance. And she was so, like, it was such a proud mom moment. Um, watching her interact with all these women that I call friends. And, um, Um, and just really seeing her see the power in these women, um, cause I could really see it like she was, she was helping with makeup and, you know, kind of helping things move along so that we could get, you know, cause I wasn't going to have a lot of time to help them with makeup or hair or whatnot. And it was just, it was remarkable to see her interact with people and people coming up to me and telling me how amazing she was. you know, those are, those are words that a mom always wants to

K:

Yeah. Oh, and she was there every step of the way all through our whole like parade and walking across the Golden Gate Bridge and celebrating afterwards. She was right there with you and supporting you. I just love that you have that memory of that whole two days, three days spent with her so intimately partnering with you on your life's passion.

D:

And it was, it was really interesting. Um, flat day is actually on my other daughter's birthday. Um, so it was the day that we walked across the Golden Gate Bridge with my daughter Brianna was very emotional because it too was also my, my youngest daughter's birthday, but as we were walking past, and so it was just like all these emotions, but positive and like, God, that was a magical wasn't it? That Golden Gate Bridge, I just had tears running down my eyes and I'm not like a big crier but when, people are driving by honking their horns in support and in solidarity to us as we walk across. It was just, sorry, I know I digress but it was such a magical moment.

K:

No, it was. There'll be never be anything else like it. I think it was also, I think for both of us, you know, some of our first memories of solidarity and the flat community.

D:

Yes, amazing. And then knowing that I shared it with my daughter, um, the only thing that could have made it any better was having my other one next to me as well, which she was in memory.

K:

Well I want to transition now and talk a little bit about your special diagnosis? I've talked about triple negative and interviewed a couple other gals that have had triple negative diagnoses, and it feels so much different, but it's not always different if you capture all of the cancer in surgery in the first place.
It doesn't have to be, you know, such a scary diagnosis, but in your case. Um, unlike Marquita, my first guest that talked about triple negative, in your case, all the cancer cells were not captured and you did end up having not just recurrence, but serious stage four cancer cells traveling throughout your body.

K:

So what do you want people to know about your experience of triple negative?

D:

I try not to be super scary, but it, it, it is. Lot of, um, hormone positive, cancer cells are grade one, which means they don't replicate super fast. Um, triple negative is almost always grade three, which means it duplicates at a rapid phase. . And that's and that's where the big problem lies, right? On top of not knowing what is feeding it. And so you just kind of like, you're chucking darts at a, at a dartboard hoping something sticks.

So I tried really hard to go aggressive in the very beginning, when I was stage one. and because knowing triple negative does have, supercells and, um, so I went aggressive, you know, my doctors had offered a lumpectomy with some radiation and I was like, no, I want a double mastectomy, no reconstruction, let's get chemo and like, I was like, this is just, we're doing all the things you know, we're fighting it and you know, we named my cancer Toby because I didn't want it to be, like me, who I am. Um, so that's kind of a tip that I highly recommend naming your cancer or somehow like making it less you.

K:

Right. Separating it.

D:

That way, you have something to fight, right? You're not fighting yourself, you're fighting, you know, the cancer itself. Um, but anyhow, in 20, at the very end of 2023, I was getting really kind of raspy in my voice. And one of the components of going, becoming metastatic is a lot of times it'll go in your, um, Help me out, Kathleen.

K:

Oh, your thyroid?

D:

Thyroid, thyroid, thank you. Um, which, if it goes to your thyroid, a lot of change your voice or things like that because it's around your esophagus. So we did a bunch of testing. I mean, we went and we did an ultrasound of my thyroid. I saw two different ENTs, they scoped my nose, and then all the way down to my vocal cords.

K:

Wow.

D:

And then at the beginning of 2024, my oncologist was like, let's just do a big scan, what we're working with, and if there's anything, we'll, we'll tackle it. So we did an MRI and CT, um, of pretty much my chest wall, abdomen. And then head to toe bone scan. Everything went fine in February. And there was one spot on my rib that looked, had been there all along, um, looked like a past injury of that nature. Um, it was stable. But my doctor was like in six months, let's re-scan just to make sure there's been no change. And, uh, went in for my three month follow up. Everything was fine. Then I, then I was at the six month point, time to do all the scans and, um, that's when we found out that I was, I had become metastatic and, um, so all the lymph nodes around my neck now were consumed, .

So I was sounding like a chain smoker at this point, um, and then it was also in both of my lungs. So, at that point I became metastatic. Going into that scan, I had the most overwhelming feeling of dread going in and all the other scans. I never really felt that way. And then most recently, Got more scans and now it's also in my liver and a pretty significant, um, one in my brain that I just found out a couple of days ago. Yay. Um, I always find it's, I either laugh or I cry. laughter is kind of a mask to be honest,
like, there's just all this stuff happening, you know, your worst fears.

K:

It seems like you're on a fast track compared to other stage four patients that have more of a long term time to get used to things and ease into their meds and, but you're, it's very different for you. Talk about your meds now.

D:

Originally in 2022, I did taxotere. That was four rounds of taxotere and then neulasta shots the day after, um, to improve white blood cell count. and then that was just my, that was my treatment besides my double mastectomy, the first go around

K:

A monotherapy the first time—just one form of chemo?

D:

Yeah, the only reason why they did just the one was because there was no cancer in the lymph node. And so we were pretty confident that it had not gone lymphatic and, um, was pretty contained, but we still did , taxotere. And so when I became metastatic, we did taxol, um, And I wanted to know, like, on average, what am I looking at? Now, I know this is an average. I know this is not set in stone, but it kind of gives me an idea of, on average, Her patients. What does she see? And she had said that the first round of taxol, um, this go around was probably last six to eight months… and I got to five. So now we're switching. I'm going to trodelvie. Um, so I'm, I'm really curious to see how I, how Toby responds. You know, it's a longer day, it's a longer infusion, um, so once you have progression, um, that's when they, either they, they stop you on your line of treatment. If it stops working with the tumor or your quality of life is no longer there, like you just tap out. There is no cure at this point. This is more of just fighting as much as I can for as long as I can to give me as much life as I can. Um, and that, that is a big component to wrap your head around.

And so, you know, we're looking at my day to day life much differently, you know, , even just over the, this past weekend, we were going to go to the light festival. We had the snowstorm and I was laying, sitting on the couch going, Do I really want to go? Nobody's meeting me there. I could totally skip it. No one would even know. And then I'm like, no, I don't know if I'm going to have the opportunity to do this again.

So let's do it. And it was, it was a fun day, but that's kind of where I'm living is trying to put at least something into it that I can make a memory for. Um, so basically 2025, my motto, my resolution, whatever you want to call it, is just living intentionally. And so that's kind of how I'm moving forward.

You know, every month I'm pre determining what I want to do for the month. There's a lot less of, “oh, I'll do it next time.” Because I don't know if next time is actually an option. So that makes it a little more exciting as well to know that, like, you know, I can share that with family and friends and stuff like that, including you. So, you just have to take it day to time and stop looking at the past and not look too far in the future so that you're, you know, just kind of living in the present.

K:

And I know that you recently quit your other main job, your full time job. Are your family members also able to carve out some extra time from their livelihoods right now?

D:

Yeah, yeah. It's really beneficial. My, my parents are retired so they can kind of help wherever need be. Um, Mike works from home. He has a job that he'll be working, for the next few months, but he's working from home. So, the infusions are like 20 minutes away. So if we just have a doctor's appointment and he's very can come with me. Um, And so it's, yeah, so it's been kind of nice to just be able to have some time with all of them and then, you know, we try and plan stuff on the evenings and weekends. Weekends are a little bit easier for, you know, the masses that are working. But yeah, that's a good thing about social media and texts and things like that. You can stay pretty connected amongst your, your peoples pretty easily, um, when you need it.

K:

Yes, to tell people exactly what's going on with your treatment. It is so reassuring as one of your friends to not be in the dark, but to be seeing your faces and seeing all the emotions on your faces. So thank you for that. Yeah. Oh, how did you and Mike come up with that as a plan?

D:

I don't want to say laziness, but like, just, you know, uh, we just have so many people that really care about us and want updates and being a photographer and, you know, it was just like, we need to update everybody. I felt it really important to just be able to tell it once, um, because of the fact that I am on such a short timeframe. I didn't want to have to constantly be updating, you know, this pocket of friends, this pocket of friends, this family member.

K:

Oh, it's exhausting!

D:

It’s just this on YouTube, post it on social. Anybody can share it so it's just been really beneficial for me to and Mike too, just to share it once and also documenting,

K:

I wanted to ask you Before we go, about your plans for your celebration of life, because I love that you're being so intentional about planning for your last days, and just so brave. I'm so proud of you in that way. Can you share a little bit about what you have planned?

D:

Yeah, I, I'm, So before I was even diagnosed originally. Um, I, I specifically remember going through this. I think we were going to the beach and Mike and I were, you know, just. Talking and I know I got into this really weird space of thinking about my death again before I even knew I had breast cancer and it was just like had this overwhelming panic feeling that no one would show up to my funeral. Like, I'm like, well, what if they're busy? And what if they like, you know, and they're, and, and I got like really emotional, and then I got my cancer diagnosis and we were just all in the thick of it. And, um, even during my first active treatment rounds, I really wasn't thinking too much about mean, I was thinking a little bit more about mortality, but I felt like there was an end—there was an end to my treatment. But when I became metastatic, um, mortality became a very big reality. Like, a very big reality. Feel like I have the benefit of knowing that I'm going to die sooner than later. And a celebration of life before I'm gone sounds so magical for myself, for the people that have those experiences with me.

Being able to just share one last time how much that day meant or whatever comes up, um, so I feel like it. A celebration of life before you're dead is really beneficial for you and the family that you're leaving behind because once you are gone, you know, all these people can lean on each other. Um, and maybe, maybe even, you know, after the fact, some closure that maybe needed something you know, why not get closure before they're gone? I don't know what that looks like. I'm a little panicked that I'm fast tracking to that end. Um, just with my most recent scans. It's hard not to think about but, uh, I have a great support system and, um, the intentional living is really helping, because I'm not wasting my final days.

K:

Yeah, when I've thought about your plan to have the end of life celebration before you die, I think it's also really great for your, your partner, for Mike, because when you witness a funeral and that person is then alone, they're wishing that you could have seen. How loved and valued you were and and the funeral.

They get to see it, but they're always wishing that you could have seen it. So I love that, that you at least have the power and the control over when you're celebrating your life. And I love that we will be able to dress up with abandon and makeup and do our hair up because you're the, the makeup and dress up queen, right? And just be playful with you and shower you with bubbles and love and hugs and so that you know just how special you are.

D:

that's definitely been a really hard thing because my, I, I take care of people like that is just, I'm, I'm always mom, you know, and, um, having people take care of me has been kind of a, a new thing that I've had to get used to. Um, but it's, been good to just see all the people that have stepped up for me and in small ways and in big ways. And, um, I've definitely felt very, very loved. Um, so yeah.

K:

Well, if you need someone to help you plan that future event so that you can stay in the present, then just lean on me and ask me to, to do that.

D:

I picture this as like Burning Man meets, you know, just, just a fun day of celebrating and then, you know, also having just all my people around. Uh, I kind of, I've had a few, um. gatherings. I had a 50th birthday party in December and then when I was first diagnosed, we rented a big lake house and had my family and friends that were really close when I was first diagnosed. All kind of stay under one or one roof and we had the weekend and you know, had fires outside and we, you know, did all kinds of things. And my happy place was actually Standing on top of the landing, looking down at my family and friends, just being together and Coexisting and just watching the magic happen is so beautiful to me to watch.

And, you know, even this, um, earlier this year I went to, um, Depo Bay and I had, um, Jenn Boom and, um, my best friend, who is Ani, and we all met for, um, the King Tides, and Brianna met us too, so it was like all this, but it was like taking, you know, my best friend and then one of my flatties, and you're like, okay, well, will they, will they commingle, right? But like the whole time I probably took like six different pictures and six different times that they were just in this conversation, like just chatting, chatting together without me. It was so beautiful to watch. Like I saw him in the kitchen having munchies and I was just like… I don't know what that is, but that's my happy place is just watching people from all avenues of my life to just kind of connect and, uh, it's, it, yeah, it's just, it's interesting the things that you find heartfelt. I’m soaking them all in.

K:

I'm so honored that you decided to come on and be interviewed today in this super, super vulnerable time of your life and so, so grateful to be in this with you. Um, I want others to know about how to sign up, especially those in the Northwest, but even people who are willing to fly in, I can, I can help arrange accommodations if necessary. Um, so I know that your first available studio appointments are the 17th and 18th of May, and then you've got, um, some on the 7th and 8th of June, I think?

D:

Yep. So everything that is available, um, for my schedule is out on WarriorWomenPortraits. com.

There is some other videos of women that I have photographed that I've interviewed as well on there,
Just find whatever day works best for you if you want to, um, there is a minimal space in the studio, so I try and keep it all the people that are either being photographed or, um, my one person that I tend to have to do behind the scenes or assistant like you do every once in a while. So I try and, um, not allow guests to bring friends just because we are on limited space you know, I'll be your friend for the day. And you might make some new ones along the way.

But yeah, I take care of everybody in the studio. They just literally need to show up. I have not had anybody say that they have regretted making the time to do it. So it's just a day of dress up and, um, it is 90 to sign up—really just kind of to help cover a lot of the makeup costs and things like that. And that includes one image.

So, um, basically for 90, you get the full day experience and one image to take away from the session.
I wanted to make sure that this was in a reasonable price point that if people didn't have the funds to do any more than just one image, they at least walked away with one image. That really, really was important to me.

K:

Oh, thanks Danyel.

D:

Of course. Thank you so much for having me. I appreciate you

K:

I'll see you soon.

This and next week I'll be interviewing some friends close to home. I live in Oregon Wine Country, and there are a few breast cancer survivors who live in my part of the woods that I've gotten close to over the past two years. Brenda is one. We talk just about every week and see each other monthly. She's been through so much, and she keeps going, relying mostly on her own strength. I was thrilled to be able to hand her the mic, as we sat in my living room together to record this episode. 

Transcript:

Today's my first in person interview. I have my friend Brenda Huff with me. She's a neighbor and my sidekick that I invite to all kinds of local events. We hang out together in person a lot and I thought I would have her here to my house for an interview for the podcast. And Brenda is a resident of Forest Grove, the town that's closest to where I live. And she is a former stay at home mom. Raising her kids, and she's also right now in recovery from a number of injuries and from homelessness. So she's had a bit of a rough time recently, but she's doing amazingly in recovering.

And so I, I really wanted to invite her to tell her story. She's a fellow flattie. She had stage three breast cancer, went straight to flat from a double mastectomy and, went through treatment with chemo. And did you have radiation? I can't remember. Yeah, you had radiation too. So, we live in the same community, have a lot of the same friends, and we're part of the same flat community called West Valley Flatties.

And so Brenda and I see each other a lot. And I wanted to ask her, in particular, about a part of her story that involves the early days of her being flat and being on chemo. And I think this is an important perspective because I tend to have a lot of folks on later in their journeys when they're very used to their new bodies and have, you know, adapted and are celebrating their new bodies.

But I think a lot of us, and Brenda included, have had a rough start at the beginning of kind of starting to accept the flatness and the change. And so I wanted to ask you first, Brenda, how did you decide to go flat? 

B:

Um, I wasn't sure about putting implants in there if they would fail me down the road. My surgeon had said something about it and he had asked me several times if I wanted the implants and I said no. I said I think I'll just hold off and I'll just be flat. 

K:

Okay, so it was kind of just your own intuition, your own feeling about what you needed. And did you have any fears about what you would look like when you first saw yourself in the mirror after that surgery?

B:

Yeah, I did. It was hard. It was really hard. But, um, sometimes I'll wear the prosthetics and then sometimes not, you know, but it's hard to go flat just for myself. And some, some of my friends that are in the flatties just go flat, you know, and they're fine with it. But me, I just still hesitant of it. So I just wear my fake ones.

K:

Yeah, no, that's that's great. I think for me, I have a fake one too because I have a small Goldilocks and then I have a little fake prosthetic that it kind of sticks on to my skin and I can wear it when I'm feeling uncomfortable and I feel like I wear it in the times when I'm feeling like all eyes are on me. Um, or maybe some eyes that I don't really know or trust maybe on me. But, um, yeah, I think it's, it's great to have that freedom to be like in your body and not putting the extra stuff on sometimes. And then on the days when you need to, then putting the extra stuff, the extra prosthetic on. I think that's awesome. And I, I think we should all feel the freedom to do that. 

B:

But then I have a little joke about that too, about wearing the prosthetics. Um, mine are just made of cotton, but I've gotten out to, outside of the house to get ready to go somewhere. And I'm walking down the street and I look down and one of my prosthetics is much lower than the other one and so it's like what do you do you do you turn around and pray nobody's looking because you're playing with your boobs, you know!

K:

Oh My goodness, yeah, so I have a story about that: this Christmas I was the one that hosted here at my home and I was running around and getting a little sweaty wearing my prosthetic and it's a stick on and I don't wear a bra with it and I had never worn it when I was getting really sweaty and running around like that and sat down to eat and about like 10 bites into my meal, it fell off into my lap and like, you know, I'm looking around the table to see if anyone's noticed.

Hopefully they didn't notice anything, right? I don't think they did, but oh my goodness. That's good. One of the pitfalls of wearing a prosthetic. 

B:

Very much so. We all have it when we are cancer survivors like this. So, yeah. Yeah. I mean, unless you have implants. that are, you know, inside your skin, you don't have to worry so much, but even then I think there's some lopsidedness, some asymmetry that happens for everyone. So for everyone, even people that without cancer have one breast that is smaller than the other. 

K:

I've heard that. Yeah. That the majority of women have a breast. That's a little different or pointed in the wrong direction or whatever. So it's not just us, you know, it's other women out there too. Absolutely. Well, when I first met you, you shared a really poignant. Tear jerking story with me that's always kind of remained with me and um, I'm so honored that you trusted me with that story and you said that you would also trust the audience of the podcast with that, that hard story. And so I wondered if you would share that story here on the podcast. 

B:

Yes, um, that was a difficult time. seen the points in this, the staring and stuff like that, but never what I experienced. I lived in Tualatin and I went into Fred Meyers to do some grocery shopping and I could overhear a lady talking to her husband on the lines of, please do not say anything to that lady.

And, um, her husband never acknowledged her and, and she just kept saying, please don't do this. Please don't embarrass me. Please don't embarrass that woman. Please just let her be, you know. And he came up to me and he said, um, and I can't remember word for word what it is, but he was really rude to the point where, um, he says, women have hair.

Why don't you have hair? You look like a male. And that really hit. It hit home pretty good. Um, that lady was very upset. She tried to apologize up one side, down the other, and there was no going back from that. Um, she left her husband in that store and walked out without him. 

K:

Good. I'm glad that she did that.

B:

It's very hard because at that point I had no breasts. I had no hair. Yeah, I look like a man. I mean, it's gotten better, but You know, and a lot of the men were the ones that would point and stare, let alone the little kids. But I taught my kids, you don't point and stare. You know, but a lot of parents don't teach them that. And that's the hard part in here. 

K:

Absolutely. Yeah. Thank you for sharing that. I know at that time you were really raw. You were still going through the treatment. You had no choice but to do your own grocery shopping. And so there wasn't, it wasn't like you could, you know, You know, put a prosthetic on or put a wig on, and that point you were struggling and, and struggling financially too, I imagine.

B:

Cancer is very expensive. I mean really it is because not a lot of the free wigs are out there and not a lot of the free prosthetic is out there. Um, I was very thankful for you because you were able to give me the swimmer prosthetics and those were fun and I really appreciate that very much because I really struggled with that too to even go to a pool because I have no breasts.

So that was the hard part and a lot of bathing suits require breasts in order to look presentable or whatever, but, and I still struggle with it, but I'm thankful that I got help with you and then I found out other communities and stuff out there that will help with breasts, you know, just the prosthetic ones, but yeah.

K:

So I remember when you and I first met the first day that we met and we'd been in touch a lot through Facebook and email and things like that prior because we were meeting because of the Komen walk in Portland at the zoo and you brought your own team and your team was really good at communicating with me as kind of the head of our larger team and a support group for yourself.

And you guys had made beautiful t shirts, um, I can't remember what they said, but something about supporting you, Brenda. And, um, I was just, I loved your energy and you were all dressed up in tutus and you matched and, I'll never forget, you were one of the first women I've ever seen take your shirt off in one of those breast cancer walks for the first time, and you know, experienced that novelty of sharing that intimate part of your body with the other breast cancer survivors around you.

Do you remember what that felt like on that day? 

B:

It was an emotional day , you know, I mean all around it was emotional. I got to meet new people and then I just felt like I'm here with them. I might as well experience it with them and that was a tearjerker but it felt good. It felt good to be around those women that look like me, feel like me, you know.

It was good. 

K:

Absolutely. I relate to that. I think I remember you saying, what the heck? And just taking your shirt off because you saw so many of us that had done so, that were a part of our team as the Oregon Flatties, I guess is what the name of our team or Stand Tall AFC was the sponsor. So you were joining us because you, you saw the solidarity already and you wanted to be a part of that solidarity.

B:

Yes, that's what it was. I wanted to be one of you. You know what I mean? So yeah, it felt good. I was hesitant, but it felt really good. I thought what the heck why not? Let's join them, you know, yeah, and you seemed pretty exhilarated afterwards. So it seemed like it was a good experience It was very good day.

Very good experience for me Um being with the flatties very good I mean like you and I have a close relationship and there's a few other women that I do talk to Um, but not the closeness that you and I have You know, and I just think if somebody else is going through the same thing as we are that you need to get hooked up with the flatties. 

K:

Yeah, it's been really amazing that first day that I met you.There were a dozen of us that had our shirts off and with power.

There was a lot of power that day This last October it was a little quieter There was a kind of a rival event in Bend a lot of the flatties were doing on Floating down the Deschutes River activity and so it was It's just you and I with our shirts off this last October and that felt pretty different.

Tell me what you remember about that experience. Just being the two of us. 

B:

That was kind of different because it was kind of more butterflies . You know what I mean? Because it was, like you said, just you and I there.

So that was more butterflies like, do we do this or do we hold off or, you know, so it was a little struggle. We did it, right? I mean, you know, we had to support, you know, us. It's colder too, I remember. It was really, yeah. So we didn't keep them off for very long. No, not very long at all, I'm telling you. It was, yeah.

K:

The year before was quite chilly because we did it earlier in the morning. It was really early! 

B:

Yep. Yeah, you know, but this one, yeah. And there were so many people. That was my part. Yeah. Yeah. I mean, the year before, we had plenty of people, but this year seemed different. Like it was just a lot of people.

K:

And then another time, a strong memory for me with you was being a part of Danyel's photography studio and going through the Warrior Women portrait experience. That was so fun to be there just helping you, having fun with you, kind of playing in a playful way with photography and makeup and, and uh, Props in the photography studio tell the audience about that experience I haven't talked about that before but I hope to have Danyel on soon, but tell us what that was like for you? 

B:

I enjoyed that. You said something about let's go to Danyel's studio where she helps people kind of bring out their power, their warrior type thing.

And that was a blast. Just a blast. You helped me with makeup and wardrobe and stuff like that. And, and I did, I got to pick one final picture and that was amazing. Just amazing. I am going to probably next month blow it up, go get it blown up, but put it on the wall. That's me. You know, that is me. And it was an exciting, I mean, I love Danyel to death, you know, and I love you to death to be able to do that with me, really.

K:

So where are you going to put it in your home? 

B:

I think I'm going to put it right in the living room when everybody walks in, that's what they're going to see. Because that's me, you know, I mean, big and out there, you know, as much as you can. The cancer. Yeah. The emotional. Part of it comes later, you know in the evening and stuff, but that's the hard part, but I'm doing it.

K:

I want to hear more about that. But before we move on from the photo, tell us what the photo looks like? 

B:

The photo I am got like a black outfit on and the green and blue makeup that was on was Beautiful. That's what Danyel did and I love that makeup and then I have like um I think it's flames or yeah, I think it's flames coming out of my hands for like fire type thing, you know, I think so.

K:

Yeah, she added that in as a special effect post production, I think. Yeah, she added it in when I went and looked at the pictures and I told her, I said, I like that pose, but I like the fire with the other one. Can you put it together? And then that's when she said yes. So for those of you watching on YouTube, I'll put a picture of Brenda in that, um, in that pose. Yes. With Danyel in her studio.I thought that was amazing. Yeah, it was a good day.

K:

It was. Yeah. So you had talked about some of the emotional side of adapting to this change in your body and still recovering from cancer and some of those emotions come more in the evening? 

B:

Yeah, they come more in the evening when it's downtime. It's thinking about what's going on and stuff like that. Um, I'm single, so I live by myself. And so that's a struggle at night. 

K:

Do you have things that you do to get yourself through those hard times? 

B:

Um, yeah, I do a lot of crafts. Um, I enjoy doing stuff with silk flowers and doing different craft ideas. And, you know, generally I just give them away. But, you know, it's fun and it keeps my mind, you know, keeps all that away. So, yeah. 

K:

That's another thing that we're planning on doing actually later this week is doing some crocheting together with Danyel as part of a local breast cancer support group. So, that'll be fun. Learning how to crochet. I have never learned before, so. 

B:

I remember a very good story. Yeah. And it was kind of funny at the end. Um, you and I went to dinner, um, with the other group, um, I can't remember what they're called. But. Oh, with Best Friends. Yeah. We went to that restaurant thing and then we stopped by New Seasons on the way back. Oh, yeah. Do you remember? I remember. And, uh, yeah. We got ice cream. Do you remember that? We ate that pint of ice cream in the car before we went home. 

K:

Because we hadn't had dessert. 

B:

Yes, because we didn't have dessert in the restaurant. 

K:

I remember that. Yeah, and you told me a lot of your life story at that time when we were sitting in the car eating our pint of ice cream.

B:

I think that's where we really got to know each other was over that pint of ice cream. Yeah, good memories. Yeah. Yeah. 

K:

Well, I want to hear kind of the contrast between the woman who was standing in Fred Meyer that day getting bullied and harassed by that gentleman (or non gentleman!) and the woman who's sitting next to me right now and, and how you think differently about your body, how you defend your body in your own mind, to your own self and your demons. If that comes up, if there's any shame that comes up, how do you deal with it these days? 

B:

Um, cancer is very, very hard. The treatments are very hard on cancer. It's to kill it. I get that. But it changes a person from head to toe, big time. And I've had to grow a backbone really.

I've had to grow almost armor because I'll still get the comments, you know, not as severe as they were before. Um, but my attitude's totally changed and it's almost like you put a barrier up. Um, I don't know. I guess that has a lot to do with that, you know, I'm single and whatnot. So, I don't have that other partner to really, you know, cry on or whatever.

But, I struggle with the brain part of it, with the chemo. Um, about that I know I want to say something and does it come out right? Not really. Or, um, it gets jumbled up in my head and it just doesn't come out at all.

And I really struggle with the memory part of it. But You know, um, I've just gotten a lot stronger, I think, and, and I have friends to lean on. Um, back then I really didn't. You knew who your friends were and who they weren't. Um, and so I've grown closer to a few, you know, and I'm sitting next to a wonderful one right now that all I have to do is call if I have questions. And that's what you've said all along. And that's what everybody needs that is coming into, you know, dealing with the. The treatments and stuff of cancer is they need somebody that, that's already been through something to be able to talk to.

K:

Well, Brenda, what do you say to, or what would you say to a brand new cancer patient who's just facing mastectomy and treatment today, um, with all the wisdom that you've gained in the last few years since your experience, what would you, what are some of the key pieces of advice you wish you had known back then?

B:

To put your armor on. Don't listen to what they have to say. Um, when you would see people staring or pointing, just let it go. Just let it out of your mind. Just don't listen. Um, and get yourself a coach or somebody to talk to. Um, I didn't have the coach or the friends or the flatties until after I was pretty much done with my treatments and stuff.

I wish I would have had that throughout the whole thing because those women have already been through what I went through. Just hook up with somebody you can talk to besides your family. You know, besides the normal friends that you see on a regular basis, get with somebody that has already been through what you're going through.

It will help a lot. 

K:

I so agree with that. It made all the difference for me, too. I think we need, we feel like we need to kind of buckle down and just handle it. It's not so bad. Other people go through this, too. My case isn't the worst case. But, until you get with the others that have been through what you're going through, you You don't really see just how much you really are going through.

B:

Yes, yes. And how much you have to deal with on a regular basis. You know, it is a lot to take in. Cancer is not a game, you know, cancer knows no age, no sex, no color . It does what it needs to do and it wants to prevent you from breathing, you know, really, and you have to be strong and do what you need to do to survive.

K:

Yeah. If you see someone in Fred Meyer who looks similarly without breasts and without hair, what is your inclination nowadays? Do you have, I mean, you probably haven't had that experience, but if you do, what do you think that you would say to that woman? 

B:

I'd go up to that woman and say, you look beautiful as ever. You're amazing. You're, you're a survivor. Yeah. Yeah. I'm glad that we can say that to each other. I wish we, I wish I had that back then. I wish I had the coat of armor on. I wish I had that, but I didn't. But I guess I needed to go through that to get to this point. But women are beautiful regardless if they have breast hair, whatever, they're beautiful.

K:

Amen to that. Yes. Do you remember how you found the flat community? Is it on Facebook? 

B:

I believe I found it on Facebook. Um, I can't remember who I was talking to. I was talking to somebody from a different little group. Oregon Breast Cancer Support Group. Maybe that's what it was. Maybe that's what it was.

K:

That's where I met you I think. 

B:

Okay. That's probably what it was and that's how we, because I investigated a couple other ones too and I thought, no, I, I like this one, you know, so yeah, but yeah, I think that's where it came from. And don't get me wrong. There's a lot of places out there. There's a lot of little support groups. So if the flatties didn't work out, then, you know, there was other ones out there, but I'm glad that I was able to keep in contact with you guys. Yeah. Yeah, there's so many little niches within the breast cancer community There's triple negative. There's lobular like me, you know, and then the way that we look afterwards the you know, flatties versus You know people who have had To explant that's another you know, special group people that understand going through having their hopes up about having new breasts and then their new breasts not working out for them.

K:

So I feel like we connect around those little minority margin experiences. 

B:

Because us women that are in the flatties have a little bit of this and a little bit of that. So we kind of have all those different little groups in there. You know what I mean? 

K:

Yep. Yeah. Well, thanks Brenda for being here. Thank you so much.

I just want to say that I'm proud of the woman that you are today. You're taking such good care of yourself and advocating for yourself and being alone. It's hard to do that. 

B:

I know it is. It's a struggle. But I'm just thankful to have you as a friend. So thank you so much and thank you for doing this. I figured that I have, I got cancer for a reason. I got a cancer so that I could teach somebody and hopefully this podcast will teach somebody what I went through and maybe they won't have to do the same thing. 

K:

Yeah. Yeah. Don't stay alone. If you're isolating, um, reach out and find a group and. Find a way to connect with people in person. I think that's really good, really good advice. I'm so glad that you're just down the street from me. 

B:

I know, me too. Thank you so much. Yeah. Thank you.