Episodios
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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.
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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 [email protected]
Listen and Subscribe on: APPLE PODCASTS - SPOTIFY - AMAZON
Or watch on YouTube: https://youtu.be/agbu6QjDiXs
Support my work by making a donation here:https://liberapay.com/abreastcancerdiary/
This episode has not been transcripted.
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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.
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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.
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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)
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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: [email protected]
This episode doesn't have a transcript.
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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: [email protected]
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.
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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!
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Here's this same podcast with photos from Burning Man shown on YouTube: https://youtu.be/a6Oq4OxQYPs
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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.
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Links:
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 transplantedA:
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.
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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!
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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
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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.
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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?
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