Hilde Mosse comes from one of the wealthiest families in Berlin and stands to inherit an enormous fortune. But she longs for something more meaningful than the luxurious lifestyle her family provides. So Hilde decides to pursue her dream of becoming a doctor. As the Nazis take power in Germany and the Mosse family is forced to flee, Dr. Hilde Mosse lands in New York having nearly lost everything.. She finds her calling treating the mental health of Black youth – and the symptoms of a racist system. In addition to photographs, school records, and correspondence spanning Hilde Mosse’s entire lifetime, the Mosse Family Collection in the LBI Archives includes the diaries she kept between 1928 and 1934, from the ages of 16-22. Hilde’s papers are just part of the extensive holdings related to the Mosse Family at LBI. Learn more at lbi.org/hilde . Exile is a production of the Leo Baeck Institute, New York and Antica Productions. It’s narrated by Mandy Patinkin. This episode was written by Lauren Armstrong-Carter. Our executive producers are Laura Regehr, Rami Tzabar, Stuart Coxe, and Bernie Blum. Our producer is Emily Morantz. Research and translation by Isabella Kempf. Voice acting by Hannah Gelman. Sound design and audio mix by Philip Wilson. Theme music by Oliver Wickham. Please consider supporting the work of the Leo Baeck Institute with a tax-deductible contribution by visiting lbi.org/exile2025 . The entire team at Antica Productions and Leo Baeck Institute is deeply saddened by the passing of our Executive Producer, Bernie Blum. We would not have been able to tell these stories without Bernie's generous support. Bernie was also President Emeritus of LBI and Exile would not exist without his energetic and visionary leadership. We extend our condolences to his entire family. May his memory be a blessing. This episode of Exile is made possible in part by a grant from the Conference on Jewish Material Claims Against Germany, which is supported by the German Federal Ministry of Finance and the Foundation Remembrance, Responsibility and Future.…
A Breast Cancer Diary is a deeply personal podcast where women tell the stories of breakthroughs, connections and paths to overcoming the challenges of Breast Cancer. It's for women who are facing decisions in the near future, as well as those who remain in this world years after diagnosis. It explores themes of body positivity, reframing of family, relationships, lifestyle, work, and it also explores recurrence, metastasis and the sacrifices that we don't normally talk about.
A Breast Cancer Diary is a deeply personal podcast where women tell the stories of breakthroughs, connections and paths to overcoming the challenges of Breast Cancer. It's for women who are facing decisions in the near future, as well as those who remain in this world years after diagnosis. It explores themes of body positivity, reframing of family, relationships, lifestyle, work, and it also explores recurrence, metastasis and the sacrifices that we don't normally talk about.
This and next week I'll be interviewing some friends close to home. I live in Oregon Wine Country, and there are a few breast cancer survivors who live in my part of the woods that I've gotten close to over the past two years. Brenda is one. We talk just about every week and see each other monthly. She's been through so much, and she keeps going, relying mostly on her own strength. I was thrilled to be able to hand her the mic, as we sat in my living room together to record this episode. Transcript: Today's my first in person interview. I have my friend Brenda Huff with me. She's a neighbor and my sidekick that I invite to all kinds of local events. We hang out together in person a lot and I thought I would have her here to my house for an interview for the podcast. And Brenda is a resident of Forest Grove, the town that's closest to where I live. And she is a former stay at home mom. Raising her kids, and she's also right now in recovery from a number of injuries and from homelessness. So she's had a bit of a rough time recently, but she's doing amazingly in recovering. And so I, I really wanted to invite her to tell her story. She's a fellow flattie. She had stage three breast cancer, went straight to flat from a double mastectomy and, went through treatment with chemo. And did you have radiation? I can't remember. Yeah, you had radiation too. So, we live in the same community, have a lot of the same friends, and we're part of the same flat community called West Valley Flatties. And so Brenda and I see each other a lot. And I wanted to ask her, in particular, about a part of her story that involves the early days of her being flat and being on chemo. And I think this is an important perspective because I tend to have a lot of folks on later in their journeys when they're very used to their new bodies and have, you know, adapted and are celebrating their new bodies. But I think a lot of us, and Brenda included, have had a rough start at the beginning of kind of starting to accept the flatness and the change. And so I wanted to ask you first, Brenda, how did you decide to go flat? B: Um, I wasn't sure about putting implants in there if they would fail me down the road. My surgeon had said something about it and he had asked me several times if I wanted the implants and I said no. I said I think I'll just hold off and I'll just be flat. K: Okay, so it was kind of just your own intuition, your own feeling about what you needed. And did you have any fears about what you would look like when you first saw yourself in the mirror after that surgery? B: Yeah, I did. It was hard. It was really hard. But, um, sometimes I'll wear the prosthetics and then sometimes not, you know, but it's hard to go flat just for myself. And some, some of my friends that are in the flatties just go flat, you know, and they're fine with it. But me, I just still hesitant of it. So I just wear my fake ones. K: Yeah, no, that's that's great. I think for me, I have a fake one too because I have a small Goldilocks and then I have a little fake prosthetic that it kind of sticks on to my skin and I can wear it when I'm feeling uncomfortable and I feel like I wear it in the times when I'm feeling like all eyes are on me. Um, or maybe some eyes that I don't really know or trust maybe on me. But, um, yeah, I think it's, it's great to have that freedom to be like in your body and not putting the extra stuff on sometimes. And then on the days when you need to, then putting the extra stuff, the extra prosthetic on. I think that's awesome. And I, I think we should all feel the freedom to do that. B: But then I have a little joke about that too, about wearing the prosthetics. Um, mine are just made of cotton, but I've gotten out to, outside of the house to get ready to go somewhere. And I'm walking down the street and I look down and one of my prosthetics is much lower than the other one and so it's like what do you do you do you turn around and pray nobody's looking because you're playing with your boobs, you know! K: Oh My goodness, yeah, so I have a story about that: this Christmas I was the one that hosted here at my home and I was running around and getting a little sweaty wearing my prosthetic and it's a stick on and I don't wear a bra with it and I had never worn it when I was getting really sweaty and running around like that and sat down to eat and about like 10 bites into my meal, it fell off into my lap and like, you know, I'm looking around the table to see if anyone's noticed. Hopefully they didn't notice anything, right? I don't think they did, but oh my goodness. That's good. One of the pitfalls of wearing a prosthetic. B: Very much so. We all have it when we are cancer survivors like this. So, yeah. Yeah. I mean, unless you have implants. that are, you know, inside your skin, you don't have to worry so much, but even then I think there's some lopsidedness, some asymmetry that happens for everyone. So for everyone, even people that without cancer have one breast that is smaller than the other. K: I've heard that. Yeah. That the majority of women have a breast. That's a little different or pointed in the wrong direction or whatever. So it's not just us, you know, it's other women out there too. Absolutely. Well, when I first met you, you shared a really poignant. Tear jerking story with me that's always kind of remained with me and um, I'm so honored that you trusted me with that story and you said that you would also trust the audience of the podcast with that, that hard story. And so I wondered if you would share that story here on the podcast. B: Yes, um, that was a difficult time. seen the points in this, the staring and stuff like that, but never what I experienced. I lived in Tualatin and I went into Fred Meyers to do some grocery shopping and I could overhear a lady talking to her husband on the lines of, please do not say anything to that lady. And, um, her husband never acknowledged her and, and she just kept saying, please don't do this. Please don't embarrass me. Please don't embarrass that woman. Please just let her be, you know. And he came up to me and he said, um, and I can't remember word for word what it is, but he was really rude to the point where, um, he says, women have hair. Why don't you have hair? You look like a male. And that really hit. It hit home pretty good. Um, that lady was very upset. She tried to apologize up one side, down the other, and there was no going back from that. Um, she left her husband in that store and walked out without him. K: Good. I'm glad that she did that. B: It's very hard because at that point I had no breasts. I had no hair. Yeah, I look like a man. I mean, it's gotten better, but You know, and a lot of the men were the ones that would point and stare, let alone the little kids. But I taught my kids, you don't point and stare. You know, but a lot of parents don't teach them that. And that's the hard part in here. K: Absolutely. Yeah. Thank you for sharing that. I know at that time you were really raw. You were still going through the treatment. You had no choice but to do your own grocery shopping. And so there wasn't, it wasn't like you could, you know, You know, put a prosthetic on or put a wig on, and that point you were struggling and, and struggling financially too, I imagine. B: Cancer is very expensive. I mean really it is because not a lot of the free wigs are out there and not a lot of the free prosthetic is out there. Um, I was very thankful for you because you were able to give me the swimmer prosthetics and those were fun and I really appreciate that very much because I really struggled with that too to even go to a pool because I have no breasts. So that was the hard part and a lot of bathing suits require breasts in order to look presentable or whatever, but, and I still struggle with it, but I'm thankful that I got help with you and then I found out other communities and stuff out there that will help with breasts, you know, just the prosthetic ones, but yeah. K: So I remember when you and I first met the first day that we met and we'd been in touch a lot through Facebook and email and things like that prior because we were meeting because of the Komen walk in Portland at the zoo and you brought your own team and your team was really good at communicating with me as kind of the head of our larger team and a support group for yourself. And you guys had made beautiful t shirts, um, I can't remember what they said, but something about supporting you, Brenda. And, um, I was just, I loved your energy and you were all dressed up in tutus and you matched and, I'll never forget, you were one of the first women I've ever seen take your shirt off in one of those breast cancer walks for the first time, and you know, experienced that novelty of sharing that intimate part of your body with the other breast cancer survivors around you. Do you remember what that felt like on that day? B: It was an emotional day , you know, I mean all around it was emotional. I got to meet new people and then I just felt like I'm here with them. I might as well experience it with them and that was a tearjerker but it felt good. It felt good to be around those women that look like me, feel like me, you know. It was good. K: Absolutely. I relate to that. I think I remember you saying, what the heck? And just taking your shirt off because you saw so many of us that had done so, that were a part of our team as the Oregon Flatties, I guess is what the name of our team or Stand Tall AFC was the sponsor. So you were joining us because you, you saw the solidarity already and you wanted to be a part of that solidarity. B: Yes, that's what it was. I wanted to be one of you. You know what I mean? So yeah, it felt good. I was hesitant, but it felt really good. I thought what the heck why not? Let's join them, you know, yeah, and you seemed pretty exhilarated afterwards. So it seemed like it was a good experience It was very good day. Very good experience for me Um being with the flatties very good I mean like you and I have a close relationship and there's a few other women that I do talk to Um, but not the closeness that you and I have You know, and I just think if somebody else is going through the same thing as we are that you need to get hooked up with the flatties. K: Yeah, it's been really amazing that first day that I met you.There were a dozen of us that had our shirts off and with power. There was a lot of power that day This last October it was a little quieter There was a kind of a rival event in Bend a lot of the flatties were doing on Floating down the Deschutes River activity and so it was It's just you and I with our shirts off this last October and that felt pretty different. Tell me what you remember about that experience. Just being the two of us. B: That was kind of different because it was kind of more butterflies . You know what I mean? Because it was, like you said, just you and I there. So that was more butterflies like, do we do this or do we hold off or, you know, so it was a little struggle. We did it, right? I mean, you know, we had to support, you know, us. It's colder too, I remember. It was really, yeah. So we didn't keep them off for very long. No, not very long at all, I'm telling you. It was, yeah. K: The year before was quite chilly because we did it earlier in the morning. It was really early! B: Yep. Yeah, you know, but this one, yeah. And there were so many people. That was my part. Yeah. Yeah. I mean, the year before, we had plenty of people, but this year seemed different. Like it was just a lot of people. K: And then another time, a strong memory for me with you was being a part of Danyel's photography studio and going through the Warrior Women portrait experience. That was so fun to be there just helping you, having fun with you, kind of playing in a playful way with photography and makeup and, and uh, Props in the photography studio tell the audience about that experience I haven't talked about that before but I hope to have Danyel on soon, but tell us what that was like for you? B: I enjoyed that. You said something about let's go to Danyel's studio where she helps people kind of bring out their power, their warrior type thing. And that was a blast. Just a blast. You helped me with makeup and wardrobe and stuff like that. And, and I did, I got to pick one final picture and that was amazing. Just amazing. I am going to probably next month blow it up, go get it blown up, but put it on the wall. That's me. You know, that is me. And it was an exciting, I mean, I love Danyel to death, you know, and I love you to death to be able to do that with me, really. K: So where are you going to put it in your home? B: I think I'm going to put it right in the living room when everybody walks in, that's what they're going to see. Because that's me, you know, I mean, big and out there, you know, as much as you can. The cancer. Yeah. The emotional. Part of it comes later, you know in the evening and stuff, but that's the hard part, but I'm doing it. K: I want to hear more about that. But before we move on from the photo, tell us what the photo looks like? B: The photo I am got like a black outfit on and the green and blue makeup that was on was Beautiful. That's what Danyel did and I love that makeup and then I have like um I think it's flames or yeah, I think it's flames coming out of my hands for like fire type thing, you know, I think so. K: Yeah, she added that in as a special effect post production, I think. Yeah, she added it in when I went and looked at the pictures and I told her, I said, I like that pose, but I like the fire with the other one. Can you put it together? And then that's when she said yes. So for those of you watching on YouTube, I'll put a picture of Brenda in that, um, in that pose. Yes. With Danyel in her studio.I thought that was amazing. Yeah, it was a good day. K: It was. Yeah. So you had talked about some of the emotional side of adapting to this change in your body and still recovering from cancer and some of those emotions come more in the evening? B: Yeah, they come more in the evening when it's downtime. It's thinking about what's going on and stuff like that. Um, I'm single, so I live by myself. And so that's a struggle at night. K: Do you have things that you do to get yourself through those hard times? B: Um, yeah, I do a lot of crafts. Um, I enjoy doing stuff with silk flowers and doing different craft ideas. And, you know, generally I just give them away. But, you know, it's fun and it keeps my mind, you know, keeps all that away. So, yeah. K: That's another thing that we're planning on doing actually later this week is doing some crocheting together with Danyel as part of a local breast cancer support group. So, that'll be fun. Learning how to crochet. I have never learned before, so. B: I remember a very good story. Yeah. And it was kind of funny at the end. Um, you and I went to dinner, um, with the other group, um, I can't remember what they're called. But. Oh, with Best Friends. Yeah. We went to that restaurant thing and then we stopped by New Seasons on the way back. Oh, yeah. Do you remember? I remember. And, uh, yeah. We got ice cream. Do you remember that? We ate that pint of ice cream in the car before we went home. K: Because we hadn't had dessert. B: Yes, because we didn't have dessert in the restaurant. K: I remember that. Yeah, and you told me a lot of your life story at that time when we were sitting in the car eating our pint of ice cream. B: I think that's where we really got to know each other was over that pint of ice cream. Yeah, good memories. Yeah. Yeah. K: Well, I want to hear kind of the contrast between the woman who was standing in Fred Meyer that day getting bullied and harassed by that gentleman (or non gentleman!) and the woman who's sitting next to me right now and, and how you think differently about your body, how you defend your body in your own mind, to your own self and your demons. If that comes up, if there's any shame that comes up, how do you deal with it these days? B: Um, cancer is very, very hard. The treatments are very hard on cancer. It's to kill it. I get that. But it changes a person from head to toe, big time. And I've had to grow a backbone really. I've had to grow almost armor because I'll still get the comments, you know, not as severe as they were before. Um, but my attitude's totally changed and it's almost like you put a barrier up. Um, I don't know. I guess that has a lot to do with that, you know, I'm single and whatnot. So, I don't have that other partner to really, you know, cry on or whatever. But, I struggle with the brain part of it, with the chemo. Um, about that I know I want to say something and does it come out right? Not really. Or, um, it gets jumbled up in my head and it just doesn't come out at all. And I really struggle with the memory part of it. But You know, um, I've just gotten a lot stronger, I think, and, and I have friends to lean on. Um, back then I really didn't. You knew who your friends were and who they weren't. Um, and so I've grown closer to a few, you know, and I'm sitting next to a wonderful one right now that all I have to do is call if I have questions. And that's what you've said all along. And that's what everybody needs that is coming into, you know, dealing with the. The treatments and stuff of cancer is they need somebody that, that's already been through something to be able to talk to. K: Well, Brenda, what do you say to, or what would you say to a brand new cancer patient who's just facing mastectomy and treatment today, um, with all the wisdom that you've gained in the last few years since your experience, what would you, what are some of the key pieces of advice you wish you had known back then? B: To put your armor on. Don't listen to what they have to say. Um, when you would see people staring or pointing, just let it go. Just let it out of your mind. Just don't listen. Um, and get yourself a coach or somebody to talk to. Um, I didn't have the coach or the friends or the flatties until after I was pretty much done with my treatments and stuff. I wish I would have had that throughout the whole thing because those women have already been through what I went through. Just hook up with somebody you can talk to besides your family. You know, besides the normal friends that you see on a regular basis, get with somebody that has already been through what you're going through. It will help a lot. K: I so agree with that. It made all the difference for me, too. I think we need, we feel like we need to kind of buckle down and just handle it. It's not so bad. Other people go through this, too. My case isn't the worst case. But, until you get with the others that have been through what you're going through, you You don't really see just how much you really are going through. B: Yes, yes. And how much you have to deal with on a regular basis. You know, it is a lot to take in. Cancer is not a game, you know, cancer knows no age, no sex, no color . It does what it needs to do and it wants to prevent you from breathing, you know, really, and you have to be strong and do what you need to do to survive. K: Yeah. If you see someone in Fred Meyer who looks similarly without breasts and without hair, what is your inclination nowadays? Do you have, I mean, you probably haven't had that experience, but if you do, what do you think that you would say to that woman? B: I'd go up to that woman and say, you look beautiful as ever. You're amazing. You're, you're a survivor. Yeah. Yeah. I'm glad that we can say that to each other. I wish we, I wish I had that back then. I wish I had the coat of armor on. I wish I had that, but I didn't. But I guess I needed to go through that to get to this point. But women are beautiful regardless if they have breast hair, whatever, they're beautiful. K: Amen to that. Yes. Do you remember how you found the flat community? Is it on Facebook? B: I believe I found it on Facebook. Um, I can't remember who I was talking to. I was talking to somebody from a different little group. Oregon Breast Cancer Support Group. Maybe that's what it was. Maybe that's what it was. K: That's where I met you I think. B: Okay. That's probably what it was and that's how we, because I investigated a couple other ones too and I thought, no, I, I like this one, you know, so yeah, but yeah, I think that's where it came from. And don't get me wrong. There's a lot of places out there. There's a lot of little support groups. So if the flatties didn't work out, then, you know, there was other ones out there, but I'm glad that I was able to keep in contact with you guys. Yeah. Yeah, there's so many little niches within the breast cancer community There's triple negative. There's lobular like me, you know, and then the way that we look afterwards the you know, flatties versus You know people who have had To explant that's another you know, special group people that understand going through having their hopes up about having new breasts and then their new breasts not working out for them. K: So I feel like we connect around those little minority margin experiences. B: Because us women that are in the flatties have a little bit of this and a little bit of that. So we kind of have all those different little groups in there. You know what I mean? K: Yep. Yeah. Well, thanks Brenda for being here. Thank you so much. I just want to say that I'm proud of the woman that you are today. You're taking such good care of yourself and advocating for yourself and being alone. It's hard to do that. B: I know it is. It's a struggle. But I'm just thankful to have you as a friend. So thank you so much and thank you for doing this. I figured that I have, I got cancer for a reason. I got a cancer so that I could teach somebody and hopefully this podcast will teach somebody what I went through and maybe they won't have to do the same thing. K: Yeah. Yeah. Don't stay alone. If you're isolating, um, reach out and find a group and. Find a way to connect with people in person. I think that's really good, really good advice. I'm so glad that you're just down the street from me. B: I know, me too. Thank you so much. Yeah. Thank you.…
Today I'm reflecting on the science related to last week's episode talking to Christina Miner about her Capsular Contracture and Breast Implant Rupture. Lot's of good resources linked below about this.... Links: Another great podcast episode on the history of implant mis-regulation is here . The checklist I mentioned is here: https://www.center4research.org/wp-content/uploads/2019/07/Black-Box-and-Checklist-Consent-Form-PDF.pdf A report on Breast Implant Illness is here: https://www.center4research.org/wp-content/uploads/2021/01/Breast-Implant-Illnesses-Whats-the-Evidence.pdf The website I mentioned for implant-associated lymphoma is here: https://justcallmeray.org/ A great advocacy group that will help you to advocate for better research: https://ourbodiesourselves.org/ Transcript: Today's another solo episode where I'm reflecting on my last guest conversation with Christina Miner. We talked about capsular contracture in the last episode, and I just want to reflect a little bit more on the meaning of this, the implications of this, the frequency of this, and a little bit about some of the risk factors. I realize that this is a very controversial and touchy issue. And by talking about these things, I want to remind listeners that I'm not taking a side. I don't have an opinion on whether breast implants are good or bad. I feel like it's still very gray, and it's a very personal decision, very much having to do with your tolerance for risk. I feel like I made an intentional choice to invite my first guest on, Michaela Raes, to talk about her positive experience with implants because I do feel like I am skewed in that most of my friends in the breast cancer community are flatties and a lot of those friends have explanted it because they have become sick as a result of their breast implants. But I don't want this podcast to be singularly about the flattie perspective and rah rah flatties. I really want it to be helpful for everyone in the breast cancer community. And I'm doing this episode in particular, not just for the brand new patient that has to decide about whether or not to get implants. I'm doing this episode to talk about ongoing risks for my friends out there who already have implants. You need to be vigilant. You need to watch those implants over the years. And certainly you need to get them replaced when they're wearing down and breaking down in your body. It's still the case that most of the people who get breast implants are not breast cancer survivors. About two thirds to three quarters of the folks who get breast implants are just getting augmentation. They are not cancer survivors. And so these things that I'm talking about today, whether it be capsular contracture or breast implant illness or cancer, So I'm going to read the definition from the National Center for Health Research about what capsular contracture is. Their definition says it's one of the most common complications of breast implants. In fact, it's over 50 percent of the population of those who get breast implants that have some amount of capsular contracture. Capsular contracture is when the scar tissue capsule that forms around the implant hardens. So it's natural for an implant to have scar tissue around it, but it's not natural or intended for that scar tissue to harden. And in some cases, the hardening of that tissue can be quite painful. And it can distort the shape of the breast, and it can make mammography more painful and less accurate. Removing the implant and the capsule without replacing the implant is the only recommended way to guarantee that this problem is corrected. According to the National Center for Health Research. Which is a National non profit think tank and lobbying group that tries to help the FDA be more responsible in its use of or approval of medical devices in general. It's kind of the main aim of that organization. Now with capsular contracture, you don't always have a problem for the patient. If it's just slight hardening, it may not be something the patient ever notices or is bothered by. Uh, but I, when I go to breast cancer walks and I table for Stand Tall, AFC, to talk to folks about flat closure. A lot of times I will have women walk up to me and talk to me about how unhappy she is with her implants. And the most common complaint is that they're rock hard. And why didn't they tell me these things were going to be rock hard? I don't like hugging people anymore. I don't like holding my children because I've got these rocks in between me and my children. What they're describing is, I now know is capsular contracture, but because we don't go back to our plastic surgeons and have ongoing conversations with them about how our breasts are feeling and how we're experiencing our breasts, we don't get told that. And so, you know, you can go on and on and even be in a breast cancer support group and have three or four of the other women in that group say, Oh yeah, mine are really hard too. I guess that's just the way it goes. So when I'm tabling now and I hear that story, I tell women to please go back to their plastic surgeons and ask for them to advocate for the insurance company to pay for removal of their implants and to get a Goldilocks procedure instead. You can still have a small breast with just the skin that's around your implant. with a Goldilocks procedure and most plastic surgeons are very happy to do that. Very, very cognizant of the discomfort of capsular contracture and the fact that it's not an intended outcome. It's not something that they want for you. So with Christina, she had an extreme case of a capsular contracture. Not only did she have lots of hardening, lots of contortion, but that thing was being eaten by her body. It was also an immune reaction. She was having multiple responses to the implant, and she experienced rupture, which is another side effect and possible risk factor in getting implants that we just don't hear about. Even folks that are given implants, they don't get to read about or talk about the likelihood that they would have a rupture or a leak. And so I want to read the description from the National Center for Health Research about rupture and leak. When a saline implant ruptures, it usually deflates quickly. But when a silicone gel implant ruptures, you may not notice any changes. And the rupture may not be detected by a doctor or a mammogram or an MRI or ultrasound. And MRI is recommended for silicone implants every 3 years for everyone following surgery. And every 2 years after that to check for a silent rupture. So it's likely that after 3 or 5 years that your breast implant will rupture. And you may not know it if you have a silicone implant. These MRIs that are recommended for follow up are not usually covered by health insurance, and this is something that people really should have been told really early on. Um, they are highly recommended to, um, just make sure that your implants are still intact and still the same shape that they should be, but they may not be paid for by your health insurance, which is a really big bummer. And silicone might migrate in to the nearby tissues such as the chest wall, lymph nodes, upper abdominal wall, and into organs such as the liver or lungs where it can't be removed. And since migrated silicone can cause health problems, it's currently recommended that any ruptured silicone implant should be removed immediately after the rupture. And treatment of these conditions might be at your own expense, not covered by insurance, or the manufacturer's warranty, unfortunately. And when I talk to friends in the breast cancer community that have had their implants, for more than 10 years already. A lot of times they have a really nonchalant attitude about that. Oh, I'm sure it'll last 20 years. I heard somebody say that their aunt's lasted 20 years. Maybe mine will too. I really discourage them from letting it go that long because the likelihood is that It will break down in your body and you will have some health effects from it. So another risk of breast implantation is something that we talked about in episode 13 with my friend Anna. She had something called breast implant illness. And this is something that's really hard to quantify or even explain in an objective way since the medical community has still not come together around a definition of it. It is. very well acknowledged by most medical professionals now as a true condition. So that's good. That's progress over about 10 to 20 years ago when it was kind of denied in the medical community. And the FDA has started to study it, which is great. They started tracking in 2008. the number of complaints that they had about breast implants and the number of complaints that they had specifically with the types of symptoms that come with breast implant illness and they found about a little over 10, 000 reports between the years of 2008 and presently, 2024, that qualify with the the relevant symptoms, which are fatigue and pain, usually mostly joint pain, skin conditions, migraines. memory loss, and brain fog. Several studies of women with breast implants have shown that they're significantly more likely to be diagnosed with one or more of the following diseases compared to other women. All of these diseases are autoimmune diseases, so they are chronic fatigue syndrome, multiple sclerosis, Sjogren's Syndrome, which my guest in episode 15 had as a result of a drug, um, coincidentally, and systemic sclerosis or scleroderma. There are so many different accounts of how many women get breast implant illness every year and unfortunately there's not a lot of studies on it so there's not a lot of objective data. I can't really tell you how many women are actually struggling with this. Mostly because, like my friend Anna who was in episode 13, they don't know that they're struggling with something related to breast implants so they can't go to the FDA and complain about their implants. So So many women have lingering symptoms for decades without running into anyone that knows that this set of symptoms actually is a result of your breast implant. So we need lots more awareness, lots more education. That's why I'm talking about this issue again on this episode. Just to get it out there so that we can talk about it in our breast cancer support groups and in our breast cancer communities. But the legitimacy of this condition is proven by the fact that removal of the implants resolves the symptoms in so many cases. The FDA said that in seven out of eight cases, there was a relief of symptoms in the folks that did get get their implants removed. So this shows that it is a legitimate medical issue that does need to be formally acknowledged by the medical community and defined well and taught about when we're giving out breast implants, right? There's another really scary side effect of breast implants that I will not focus on in this episode because I do want to have a guest on to talk about it who has more experience than I do. But there is a type of cancer that is believed to be associated with breast implants. And originally it was thought to be associated with the textured types of implants only, but it is still kind of being sorted out whether or not it's just that type of implant. And it is called “breast implant associated anaplastic large cell lymphoma.” And to a smaller degree, there's another type of cancer that is thought to be associated with breast implants called “squamous cell carcinoma.” And I hope to have Raylene Hollrah on as a guest to talk about this. She is the loudest advocate out there. She was, I think, the 30th person in the U. S. to be diagnosed associated anaplastic large cell lymphoma diagnosis after implantation. She has a website called Just Call Me Ray, and it's ray, spelled R A Y, dot org, and that's where she tells her story of having been diagnosed with a second cancer because of her implants. Uh, like I said, I'll hope to have her on to talk about that sometime. And I won't go into all of the details about this cancer risk, but it is, uh, thought to be a risk of 1 in 4, 000 patients, so very, very low risk. But, um, still being ironed out which types of implants are possibly going to cause this type of cancer and at this point, I just want to say again that it is my belief that most of the women who get breast implants are very happy with them. They don't call their breasts rock hard. They are very pleased with the outcome and they don't get any sort of disease or autoimmune disorder as a result of their breast implant. But because these risks and possible side effects do add up to a lot of concern and worry, I think for those of us who are part of our community who have implants or who are going to pursue them, we just want to make sure you have the whole picture. That you know how to watch and monitor and what to look for. When I went to get my tattoo on my chest after mastectomy and a delightful woman who did my tattoo art, uh, told me the story of how she had almost no breasts, kind of like I do now. And, um, she is really, really happy with her new breasts. And she wears clothing that accentuates them and really celebrates them and in her relationship with her husband. And she couldn't be more thrilled with them. So I think for people like her and me who have had both of the experiences of Almost no breasts and large breasts. Um, it's easy to know kind of where you stand and what you feel, as a result of that body type, but you never really know what you're missing if you haven't experienced it. And that's part of the difficulty of making the decision to get breast implants. I think, especially after breast cancer, you don't know what being flat is going to be like ahead of time until you experience it and look in the mirror afterward. So I understand why it's really hard. And it's, it's hard to be rushed into that decision as well. I think for patients like Christina, last week's guest, it's really easy to know what's right. You know, if your breast is, you know, implant is exploding outside of your, your body and it's like, Telling you that it wants out right away. You know, it's, it's easy to get that explant and to go on to be flat, but I think for people like Anna who had to live for a dozen years with these mysterious symptoms that she had no idea were connected to her breast implant, then it's a little bit more of a sad story to look back on and to tell. So if you'd like to read more about all of these phenomena, the rupturing, the possible cancers, the breast implant illness and capsular contracture, the website I would send you to is the one for the National Center for Health Research. Their website is www.centerforresearch.org, and it's right on the front of their page. Um. the information about breast implants and risks. And you can go and look for their black box warning document and their checklist document. And I would recommend printing it out. So you have it handy. I had a good friend just diagnosed with breast cancer a couple of months ago, and I was able to be strong and objective and holding this in my hand while talking to her, knowing that I'm not using my bias as a guide, but Just listing out the facts for her because, unfortunately, I know that her surgeon probably doesn't have time to do that. So, I would highly recommend going and printing out the checklist for friends of yours who are going through the decision making process or friends of yours who are suspecting that they might have a problem with their current implant. Unfortunately, the FDA is pretty slow to correct any of this. industry sloppiness. And we don't know exactly which kind of implants cause which kind of problems. The industry has not been pushed to do enough good research on the effects of their products, unfortunately. And so we also need to really push Our Congress people to push for the FDA to regulate this stuff better so that we can feel more confident recommending that our friends do get implants when they feel the need to without being nervous about them. And so I think that's a really important thing for those of us who are comfortable talking to Congress. People or writing to them or sending them an email. I think that would be a good use of our time around this issue as well. The bottom line is I think some of us just have bodies that respond more strongly to foreign objects. So it's good to know these things and have conversations. Know where to point people for the resources. Be sure to let me know what you think of this. I have a new Substack newsletter that's really interactive and I have a number of threads for discussion on it So I'm excited to see your your ideas and input on this. If you subscribe to my Substack you'll get the email updates for it, and it's just Uh, abreastcancerdiary. substack. com if you want to join. And that would be the place to respond to these kinds of kind of touchy discussions. Next week, I will have a very personal interview with a dear friend of mine here living locally, um, to me. I've decided to do a couple of interviews with friends that I see often in my own breast cancer community who are pretty newly diagnosed and still really struggling with their diagnosis and outcomes. One is still struggling with an early cancer diagnosis, early breast cancer diagnosis, and the other one is dealing with a second cancer diagnosis. I feel like I've kind of erred on the side of telling stories of victory and encouragement and coming out of the struggle with a great perspective. But my next couple of interviews are going to be a little bit more personal and raw and kind of from, uh, the midst of the struggle, I guess, and things not being resolved yet. So I'm happy that I can tell their stories too because these are really important stories and maybe even more meaningful for those who are really struggling and coming out of the midst of change and body resolution. And hopefully you'll relate to them. If not, feel free not to listen to them. If they're a little bit too triggering for you, they won't be for everyone, but I look forward to having these very special guests that are friends of mine from my local community. And I'll talk to you then.…
This episode's guest is Christina Miner, host of Our Scars Speak Podcast. Today Christina shares about her experience with capsular contracture and her openness in sharing her scars publicly. Don't forget to rate and review the show and if you want to enter for a prize for doing so, email a screenshot of your review to me at kathleenmoss@protonmail.com 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/ Join my Newsletter here: https://abreastcancerdiary.substack.com Resources from this Episode: Christina's interview with Women's Health is here Transcript: Today's guest is Christina Miner from Our Scars Speak. Christina is a fellow flat advocate who's also in my Mastermind with my former guest, April Stears of Wildfire Magazine we're co advocates in the breast ca cancer space in many different areas, both podcasters, so we learn from each other sometimes on a monthly basis with April and some other breast cancer entrepreneurs in our mastermind. And I've been learning more about Christina, listening to her podcast, have so much in common with her, and I'm thrilled to have her today. Welcome Christina. C: Thank you for having me. I'm so excited. And it's so funny when you came to me and asked me, would I be a part of this? I was like, ABSOLUTELY! Cause unbeknownst to you. I had followed you and your story about DC is and things of that nature and how things that you found out and you didn't know. And I was like, wow, and it was just so powerful and enlightening to hear you share your story on. I think it was YouTube that I found you! K: Oh, really? I didn't know that. C: It's been a while ago, but I was like, oh, and I used to always think about you and just like, I hope she's okay. K: Aww. Thank you. Yeah, when you share the raw stuff on YouTube, you kind of leave people hanging, and then YouTube doesn't show them the follow up video that says, I'm doing great. So it's kind of frustrating sometimes, but. Thank you for following me. I had no idea. So you live in Prince George, Virginia, on the other side of the country from me, and you are a counselor and working towards doing a master's in counseling and becoming a clinical therapist. And up until now, you've been also, you've been doing life transition coaching with individuals as well. Is that mostly online? C: Mostly I do have some clients that have been around town that really have gone through, you know, like newly diagnosed with breast cancer. So yeah, or either they're starting a new business and mental health. So I do consultations and coaching and I call it transitional coaching because it's usually at a transition of life. And a lot of people are like, let's just get to the raw meat of what's happening. But I'm like, okay, we're going to get to that and we're going to do that. But how's it affecting all aspects of your life? Not just this one term, like how's it affecting going to potentially affect your health, your family, you know, your social life. So I try to make for sure their wellness is also encapsulated with just with the problem or the newness of a new venture that they're having. So, yes, I do transitional coaching and I do qualified mental health. I'm a qualified mental health professional, which is someone who goes in the home to do case management sometimes with various clients in Virginia. Okay. So you work for the state right now. Or you did. C: Usually it's private organizations. K: Okay, cool. Okay. And what are you hoping to do once you have your master's? Are you going to branch into anything new? C: Yes. Well, not really new—I've done it before. It's just, I wasn't licensed at the time. Before breast cancer, I also was a partner in a mental health agency, a community based program. after breast cancer, I kind of, you know how it can be kind of stressful and you just like, you didn't, I didn't want to manage anyone. I just wanted to relax for a little bit. So that's when I said, you know what, during this time, I'm just going to see which direction I want to go. And I was like, I talked to my partner and I was like, maybe I'll. Go ahead and just get a license in counseling and become a therapist. And so that's how I went in that direction, all for the hopes of one day having a wellness center where I want to be able to just like, not just therapy. Everybody doesn't want therapy all the time. So there's a lot of holistic things that people love to embrace when they're going through life period. Not just necessarily something that has happened to them, but. As you know, because I know you really, you know, you love various holistic things, yoga, you know, um, Pilates, uh, mindfulness meditation. So I want to have a wellness program, but I will probably just start out with the outpatient therapy, um, center first and then start incorporating all the other holistic aspects to it. K: Wow. I have had a similar dream, actually. When I first met my friend and mentor, Marlena Murphy, who passed this last year from stage four breast cancer. She was so inspiring to me because she worked in a place like that, like what you're describing, and I'd never heard of it before. It was a breast cancer patient-centric clinic that served folks not only in mental health, but also in massage therapy, physical therapy, nutrition, which is my thing. And I was like, Oh my gosh, that is such a great business model. So I'll have to talk to you more about that, that center that she worked in and it's in Georgia. So it's not super close to either one of us, but maybe we can meet there someday and do a little tour. C: Because honestly, when I was in one of my classes for career counseling, I came up with another idea to add to it. We had to think of this model of what, what would you do if you, you know, it had to be something different. So I'm not going to do a wellness center. Let me add something else. And something that stuck out to me and reminded me when you were speaking a lot of times when we are getting, you know, acclimated with life after or during our treatment or after our treatments. people change professions, and sometimes people want to change professions or go back to their profession and they just cannot their acclimation to society. Everything is just different because we've gone through this traumatic experience. And so I've seen where there's an absolute need to help people into what they want to do now, because now their perspective may have changed. You may want to do a whole different course far as career. K: Yeah. I relate to that. I can never go back to the me that I was before breast cancer as much as other people do and they have no problem doing that. I just can't somehow. So, well, let's talk a little bit about your experience, with your, your diagnosis and treatment. You had like me, your main diagnosis was DCIS, which is a pre cancer and the ductal areas is kind of what they're thinking. And, um, you had an expander placed because you had decided to get a double mastectomy and implants. Tell me the story of how that expander changed your life. What was that like? C: Wow! So with with the DCIS, you know, of course, I chose a double mastectomy and For various reasons. I just I was trying to avoid all Treatment for as radiation not to say that I never would do anything like that But it was just up for me and what I knew I was facing. I was trying to avoid all that meanwhile I was like well, I don't know, maybe I could get a little bit of my life back so maybe I'll do reconstruction. Flat was given to me as an option. I must say by my doctor as one of the first options, she was like, you can go flat or you could, and then she started riddling off everything else. And I was like, okay. And I had never really heard a flat, you know, like aesthetic flat closure or just that period as being an option. I was just blown away that because a lot of people don't get that from their doctors. So she asked me about, um, you know, I could get expanders and then I could get… What was it? The gummy, I think was the gummy implants afterwards, um, after my skin expanded back out. So I was like, okay. So I asked her about the material of the expanders and she was like, it's the same material as the implant, except for I'm going to inject saline in it for your, um, when you come in here every so often. to expand it to the size that you want. And I was like, okay. So did that. But soon right after surgery, I was just sick, constantly. I had a temperature of 103 for the first three days after surgery. Um, didn't know why, but it went away. But then I had a low grade of 99. 9 all the way up until I got the expanders taken out. Um, I had a rash. Every time I ate, as soon as I put it in my mouth, it came right back out. Um, but I didn't have stomach cramps, but it was just like, as soon as I ate, it just came out and then I had headaches. I started having headaches. I started being fatigued. I started having sweats. my joints were aching and then I would try to walk and it was like, to get up, I was like having difficulty. Um, as if I had like arthritis riddled body completely, it was just a lot of different symptoms that I had at one time. So I was, my first thought after probably about a week of having, um, after the surgery, I'm like, “what is trying to kill me?” Because. It just, it got worse and worse every day. So on top of that, I started noticing that the side where the cancer was, the expander was looking like it was pushing out. It was like growing. And I was like, okay, I haven't had a fill this week. It shouldn't do this. But as you know, during, after my surgery, COVID hit, so I couldn't go to the doctor anymore. I had to stop, but I was fine with it because I was at the point where I didn't want any more fills anyway. And every time that I was going, when I was telling her how bad. I was hurting and how sick I was. And she was asking, questioning me about the temperature. She was like, you know, I said, well, maybe then I, I was just feeling terrible. Like everything you can imagine. She's like, “are you coming down with something?” And she was thinking COVID. I was “no, not that I know of I've been home.” So I had all those issues. Now I couldn't see her and now all of a sudden this left side is starting to contort, starting to turn black. it looked like I had cigarette burns on my skin. It looked like the expander was coming out my chest when I was turning. I could hear the slushing of the saline in my chest. It was an absolute nightmare and then it started happening on the right side. But not as prominent, but it was happening. So I'm telling her all these different things and she's like, okay, maybe you have an infection. She's trying to look at me on camera. She couldn't really see some of the things I was talking about. And sometimes the camera would fail. It was just a mess. So finally when I went in to see her, she was like, cause she couldn't at that point, she really couldn't see everything. Cause it hadn't, it wasn't as bad, but the day of surgery, I was like, well, can we just go ahead and do the surgery? So the day of surgery, looked at me. Well, I'll take that back. We had another appointment in between surgery and the day of surgery. And she said, “Oh my goodness, you must have breast implant illness. I think you may have breast implant illness.” And I said, what is that? And so she was telling me how like the body can reject the material of the implants. Um, I said, of course I Googled and I was like, “oh, you think I'm losing my mind?” Cause a lot of doctors associated with, um, some, a mental disorder, you know, like, oh, that it's just, it's in their mind. And she was like, “no, I believe my patients. She said, you got about every symptom here.” Um. So she said, well, let's see how you do with, you know, the implants. the day of surgery, she said, but I don't know if you're going to do that well, because if you're having this reaction, she said, but maybe I could, she said there was different types and stuff. And I was like, okay, I said, well, I don't know if I want to do that. She said, well, we don't have to. She said, but I'm thinking that might be it. She said, but I don't know for sure. So that's kind of how she worded it. So the day of surgery though, at this point, Everything was twisted. Everything was about to pop out my chest. And she looked at me and she's like, you have capsular contracture. it's the highest one, the highest level, so what do you want me to do? Do you want me to do an implant or do you want me not? I said, look, at this point I'm trusting God in you. And that's all I know to trust because I'm going to be sleep. I said, and I've never gone through this before, so I don't know that you possibly could do while you're in there. I tell it, she said, well, you're kind of leaving this kind of vague. I said, okay, then if you think that I'm damaged severely, do not put nothing in me. Leave me flat and that's it. So I woke up, she tapped me on the shoulder. She said, you're flat. She said, and I will never put an implant in your body. She said, because you were damaged that bad I had lost a layer of skin. So when she went in for the depth perception, the implant was busted and it popped open, going all over her assistant and everything. And she said, I was one of the worst cases she had seen with the hapser contractor and the breast implant illness. So after that, I came home like that same day, I felt so much better. And then when I came to my first appointment, she's like, you look night and day and my temperature dropped. So that’s what the expanders did for me. So I didn't make it to the end point. K: Wow. That is an extreme case. That is definitely the most extreme case of a bad response to, well, it's not even an implant. It's just the pre implant that I've ever heard. Did you have a known autoimmune disorder before that or anything you are aware of? C: Not to my knowledge, I do not. Now, is it to say, that I do and I just don't know because, diseases. It takes them forever to figure it out. Um, but not to my knowledge. I've never been diagnosed with like sick a cell or lupus or anything far as that. So, said, she said, you know, you may have an underlying autoimmune disorder. She said, it may just be that your body just does not like the material. was thinking, I had other things, you know, like I've had knee surgery. I've had, you know, um, root canals, you know, just thinking of things that I may have placed in my body before and I've never had it. That was the worst had ever experienced in my life. It was worse than the actual cancer. K: So you had how long to get ready for the possibility that you might wake up flat? How long did you have to process that? C: Um, that day, like right before I went into surgery, because, because of everything that was going on with COVID, it wasn't like I had this great workup, prior to, because the doctor's office was closed. You're on a camera that, you know, they didn't really use that prior to, so they're trying to figure it out. I'm trying to figure it out from my end. So the video wasn't always quality. Um, and then, yeah, I couldn't go into the doctor's office till like, I think, like I said, I've had, I had those two appointments. The one in between the surgery and the one prior to that, but that, that was it. Basically right before surgery, she came in and taught me for an hour. She just sat there with me. I was her first case after COVID. So, well, you know, once they opened the doors for us to get surgery and I, she was trying to get me in prior because I kept on telling her, like, it's going to fall out. It's going to fall out. She’s like I cannot get you in. And I was like, but why? I was like, this is like an emergency. She said that she had even taken the initiative to call the insurance companies and call, you know, talk to the hospital and they all said it was cosmetic. And I'm like, excuse me, like, I didn't just wake up one day and say, I want to alter my body and I want implants today. It was because of cancer, why I went this route. So how is that deemed? I said, I get why they say cosmetic because it's an implant, but I don't understand why it wasn't—it was nothing that I elected to do because of just wanting to. I because of something that happened to me out of my control. K: I imagine that's probably just that there was no category to put it in. And so it had to fall into that next closest category, which is not okay. Yeah. That's, that's frustrating. C: Because even if it was elective, if somebody's telling you this is falling out my chest. I did have a friend, her implant fell out in her shower during COVID they got her in, but it's like, why does it have to get to that point? Because now it's a risk of infection really bad because I'm at home. So, yeah, but. Yeah, that day of surgery, she sat with me for an hour and, um, I remember it was her first surgery and coming back from COVID and they got their vaccine. No, tested that morning for COVID vaccine had come out, but they had got tested that morning for COVID, which was like the first test, I guess, that they had had. So they were all talking, you know, it was just, a whirlwind of events, but she sat there with me for an hour. And went over to various things and she said, well, if you do go black, then what we'll do, we could later talk about other, you know, um, if you want to do other revisions or anything of that nature, but I just, I was tired at that point after I woke up had to realize I'm black. So, no, I just had maybe we talked about it for about 15 minutes and it really wasn't talking because. I had her kind of going in there blindly. Like “you figure it out because I don't know what you're about to go into and you're the professional.” She was like, that's not fair. I said, no, but I don't know. I don't know. And this was so unexpected. And with COVID I couldn't come in and down and have, I said, you've already had a conversation with me about different routes I could go. I said, and this just, please use your best judgment. K: So, did you have a choice as to whether or not to leave some extra skin or to have a tight closure or did you talk about that? C: So because I put her in that kind of gray area what she did was primarily flat and she left a little bit of dog ears on the sid—not much, but she left some. She was like you can go back and we can do a revision. She said but I'm not putting an implant in you ever again in life She's like nothing even remotely close to an implant. Um, and she talked about you know, like fat grafting and different things like that. She did not do DIEP flap because she's like the surgery is like too long, she just doesn't do it, but she'll give me a referral. So she went over those options with me and she, she said her reasoning for leaving was because in case I woke up and she said, you know what, maybe I do want to try this, that, or the third. She said, if you want to try an implant, feel free, you just gonna have to go to somebody else. But she did leave a little bit of skin back for that reason, but that was only because I left her in a very gray area with my decision and I understood why she said, now I can go and take that off. Said it would be another surgery. I hate to put you through it. She said, but because you left me kind of in this gray area, that’s what I did. K: And you didn't go back. How did you feel about being flat? Like, were you ready for that or was it really shocking and traumatic? C: I would say that—I don't know what, what has always spun out to me with this whole thing was just hearing the day that I got the diagnosis and hearing the word carcinoma. Um, ductal didn't matter in situ. I didn't care about any of that. It was just carcinoma. So, I used to work in the medical field and I used to work with this one doctor whose idea was if you got cancer, be as proactive as possible because it's a disease that's one of the worst, you know, like it, When it comes back, if it comes back, it can come back with the vengeance. So his thing is do the best way, do whatever you can first to eradicate it versus kind of like taking a little bit and that was his. No offense to anyone out there who's against that, I'm not trying to say that's what you should do, but when he spoke with me, that always stuck in my head. So, that being said, when I woke up flat, I took it as the cancer's gone, to my knowledge, you know, and I don't feel bad. Like, I was so sick from breast implant illness and the capsular contractor that even though, because even before that, I had already lost my breasts. My breasts would never be the same no matter how much plastic surgery they gave me, so I already felt there was that void there of not being who I once was, right? So with that being said, when I became flat, it was almost like, so I had, you know, I went and get my, um, prosthetics and stuff and people were like, okay, you can wear your prosthetics. That'll help you make you feel better. And I said, you know what? No, I want to embrace who I am now and I'm flat and that's who I am. Now, do I have moments where I see people in bathing suits or certain dresses? And I'm like, “Ugh”. Yes. I do have those moments. I allow myself to be in those moments. But I don't dwell in those moments because to me, I'm alive. So because I'm alive, I'm going to talk about whatever I need to talk about to help other people. And it gave me almost like a sense of confidence that I never had to walk around flat. And I know sometimes people look at me weird, probably like, “she a boy, she a girl?”, or whatever the case may be. But I'm okay with that still because they don't know my story, but Hey, if you want to use it as a way to get to know me, we can talk about what happened to me. And so I kind of, I use it now to the advantage of sharing with people about flat aesthetic, aesthetic, closure, and also about cancer in general, um, breast cancer. But yeah, at first it was, you know, it was like, okay, this is my new, this is my new me. A part of who I am now. She did what I asked her to do, and I told her, I said, I'm trusting God and you. And I, and I believe in that wholeheartedly that she did because she said, while she had me open, huh, I could do this to maybe counteract the reaction. But she said, Nope, I'm gonna leave her flat. And I'm glad she did because if I would have had to go back, I would have probably been upset. But, um, so no, so I'm, I'm grateful. I embrace my decision. When I woke up, I was like, “Oh, okay.” And that's exactly what I did. I was like, okay. And then when I felt so much better, I was like, woo. And then I did try to prosthetics a couple of times and I'm like, no, then I was like, I go back to work. Should I wear them? Or should I just be flat? You know, cause I could walk around with them one and nobody ever know nothing. And I was like: “no, I'm not, not me.” And it's not to say that I won't ever wear a prosthetic or ever get some type of reconstruction far as take, you know, going a little bit more aesthetic, um, flat closure. But the point that I'm trying to make is that I am allowing myself to accept me for me because there was a time, even with breasts, I was not very confident. I had very low self esteem and very low self worth because of things that had happened to me. as a child. Then eventually I got out of that and I said that stuff is not going to define me, but I still had issues with image. Even when I was skinny and healthy and athletic and this, that, and the third, I still had issues with image. And I was like, I'm not going to allow that to put me in a place of depression for the rest of my life. I'm going to take control over this. And so that's what I did. K: I am so impressed with your surgeon being so educated on breast implant illness, being so responsive and saying right away that I'm not even going to put an implant in you. That is, that's something you don't hear about very often. A lot of times, like you said, when you look it up online, surgeons will blame the patient and say that it's the patient's problem and it's all in their head. So it's great to hear an antithesis to that narrative of “it's all in your head.” Um, I mean, obviously this was an extreme case. You couldn't really deny it. It was right there in her face, but still she was so respectful of you and responsive as she could be during COVID. C: Yeah, because I knew nothing about breast implant illness until she said something. I had never heard of it. K: Yeah. Yeah. And how, how would you, yeah, it's a pretty obscure thing unless you've been in the breast cancer community for a while and then you hear about it. Well, tell me the story of Our Scars Speak. I know there's a story behind the name of your podcast. C: There is a story. Um, so I, after, you know, breast cancer going flat, all those things, I ended up joining the first group I joined was, uh, Here for the Girls and it's an organization in Williamsburg. And I ended up being a co facilitator, very involved with them. And then also I had joined, um, Stand Tall Aesthetic Flat Closure. Well, when I had joined Actually, they found me first because they wanted me to post a photo of myself on their Instagram. So I was like, sure, I'll take it. It's fine. And, um, so then from there, it was Renee and Kim. Um, Renee and Kim came to me. Renee Ridgely? Okay. And then Kim Bowles, right? Yep. Um, the one from Stand Tall, which is Renee, and then Kim is from “not putting on a shirt”. So they came to me like, “Hey, would you be interested in doing an article with women's health magazine?” Well, when they told me, I was like, sure. But then I thought, well, is it the real women's health magazine? Or is it like, Some, some other magazine that I'd never heard of. the editor contacted me long story short. And, uh, I did this art, I did this spread of women's health mag. Well, it was in, it wasn't in the mag, the paper version, it was online. So they thought they were just going to put me like down below, like somewhere about the health, you know, like a health article, click on, they didn't real, my editor didn't realize they were going to feature it on the very front for like the whole issue. So they wanted to do a photo, you know, with me with my shirt on or not, you know, it was up to me. And I was like, I had prayed about it. I was like, Oh, should I, should I not? And then I was like, no, yes, people need to see this. Right. So I ended up, um, I said, I'm gonna do this. So they said, well, would you, we can find you a photographer around and I was like, no, I want to come to New York. I want the whole experience because I knew they had more, um, their photographers. They were probably a little bit more educated on what they wanted as far as what they were trying to capture the ones that they worked with. So they allowed me to come to New York. And I remember the day of the photo shoot, I was standing in the mirror and I said, Oh my God. scars speak. So that stayed in my head all day long. And we did the photo shoot and I was like, wow, this is, this possibly could be a big thing for a lot of people to see who are going through or getting ready to make a decision of going flat or have to go flat. So I came back home, I was on the plane and I was writing out, I made a poem called my scars speak and it just went through my head. Like my scars speak, um, sadness, my scars speak pain, my scars…. It's just this long poem that I wrote about from the time that I found out I had breast cancer to the time that it was no longer in my body. And so many people were like, “Oh my God, I can relate to this. This is exactly how I felt.” But then from there, I was like, no, our scars speak. So that's how that title came about. And then I was like, okay, what am I to do at this? Once again, cause I'm a true believer. I prayed about it and I was like, what am I going to do? And it's like that whole weekend I was getting downloads of just everything. Like this is who you need to have up there. And so it's breast cancer, survivors, thrivers, metavivers, previvers that I have to come on. It'll be their caregivers that can come on and, you know, there's a vetting process professionals that work within the breast cancer community, those who can educate us that are doctors, a tattoo artist. I've had various people attorneys. I just want them to share. Some of them have their own personal story so they can share their story. Or they can share how they got into the breast cancer community. Cause I want people to know how, you know, something about them and that they're just not out here trying to get money from people, but how did they get involved and what’s their why to being a part of this community? And so I have various people on to share their stories and I love it. I love it. I love it. I love doing it. It was going to be just the IG live and then it just spilled over into the podcast world. Um, so yeah, so that's how that all came about through that one article. K: Wow. So the women's health magazine article, what was the kind of the punchline of that or the headline of that? What, what was the interview like? C: I’m trying to remember the actual title name, but I know that it was all about being flat. Why I chose not to be, why I chose, and it states it in there about why I didn't choose reconstruction, and why I decided to go flat. So it's about my journey of the breast implant illness and the capsular contractor and the acceptance of being flat. K: Okay. So that was a really big. voice that you had to tell the world about breast implant illness. Did you feel like that was a powerful statement? C: Yeah, I felt it was because some people are like, oh, aren't you excited? I'm like it's my mission. So for me, when I have what I call assignments, I, I, I do them so I don't get too caught up and even, “Oh, this is huge.” Like, and maybe that's wrong with me because sometimes you do need to celebrate things, but I get caught up in, this is something that I've been placed here to do. I need to do it and I need to see it to the end. Um, and so that's how I took that assignment. Like, this is something that could really, really benefit other people. Not just me being out there showing my chest. Um, scars from that, the scars from having children, hysterectomy scars. Like it's not just. It wasn't just that for me. It wasn't about, I didn't feel it was about me. Yes. It’s my story, but I felt my story was a vehicle to help other people who felt that they couldn't speak or who had a, you know, they're at a crossroads about making a decision. And I always say this, but it also spoke to the people who are no longer here, who can no longer speak. Who have transitioned into heaven or wherever they are, right? So those people still have a voice. So everything that I do is not just for me, it's for everybody. Cause I'm like, wow, who may not even have anyone in their family who have breast cancer may see that picture and go back and read the article. who knows? Maybe down the line? Somebody in their family have breast cancer and then who knows, maybe, you know, so I always look at the bigger picture and then this year had no clue. This happened in 2022. I had no clue they were going to repost it on their, um, on their Instagram. So the first time they posted, it was like a lot of likes and stuff, but not that many shares, but this time it was a ton of shares. So that even made me happier because it's like, okay, our voices are being spread even further now. K: Did you share it on your personal, like, actual in person relationship Facebook account? (Yes) Okay, okay. So let's talk about that because I also, um, have shared my bare chest publicly and I have not shared my bare chest, um, except maybe in a very different way. with like a hundred other women, um, on my, on my personal Facebook account with people I've known my whole life and having grown up in the church. My dad was a Baptist minister, um, very similar, I think, to your background in terms of like having a lot of personal contacts who are Christian and maybe even conservative Christian. Um, how does that hit? Like, how do people respond to you and how do you grapple with some of the misunderstandings that may naturally happen when Christian women are getting up and showing their bare skin of their chest? C: So I, you know, when I said I had to pray about the whole article thing, that was part of it. Like, okay, am I, I was like, I have nothing to show really. It's just a flash, but I'm like, I know how people can perceive it. Like you're still being, you know, indecent. Right. So I, I have learned because I have ministered in prisons and everywhere. I learned early on, I was always kind of considered a little rebel in a way. Um but at the end of the day, I have to live with the decisions that I make. Meaning if I feel that it doesn't bring me peace, not just in my Christina, just being Christina, but like in my heart, what I call my spirit, if I feel like it doesn't bring me peace, then I'm not going to do it. If I feel like it brings me peace and I feel like. Okay. I prayed and I feel like God is really leading me to do this. I don't care what nobody says I'm doing it. Everything that I do. I mean, not everything, of course, but the majority of things that I do Always try to make sure that I really pray about it before I move on. Is it a state that I get it all right? absolutely not because I get a lot of wrong, I really really try to be sensitive to that I walk in my faith with God and what he would call me to do not just what I want to do because me being who I am, I probably would I've done that. Would I've shown that I'm overweight? Cause I always told God, he had a sense of humor. I was going to be a model years ago. He told me I was too short. They said I had all the other characteristics without skinny. I had long hair, blah, blah, blah. And I said, Oh, so you wait till I'm overweight and have no breasts. I am modeling everywhere. No, it's just like, it's just, to me it's like a sense of humor. So you know I’m like, okay, but I'm willing. So because of that, always remind myself. At one point I used to abuse substances and I used to abuse alcohol, right? So because I had gone through a lot of trauma in my childhood and the reason why I'm saying this is because of how I am now. I made a vow that Once I stopped everything I was doing I was functioning. But once I stopped that, once he allowed me, help me to get through that. I would always share what he wanted me to share because my story is not my own. So because of that, even if I feel like, you know what, they're going to judge me, they're going to have so much to say. They're going to say, I'm not walking by faith. They're going to say, I'm not a Christian. They're going to say I'm a heathen. I don't care. Can it hurt? Yes. But I can't care enough to stop because they're not my God. K: Yeah, that's powerful. That's a big conviction and I'm glad that you have that. Um, I feel like There's, in the breast cancer community, even folks with implants, you know, anyone that's been through breast cancer totally gets it. Your body is different. You should be able to express the difference that you've experienced. And outside of breast cancer, I think a lot of my friends, even friends that are like clinical therapists, social workers, you know, they're a little boggled by it. They're curious. They're not judgmental. But then there are people, especially of the male gender, who just don't get it. Do you have, and you mentioned you have a partner, do you have a partner that defends you in this area and understands you? C: OH my gosh. So my husband and I have been married forever. We've been married 24 years and when I got diagnosed, you know how they have you to come in for your consultation. So it was my husband, my sister and my mom that I brought in and we were sitting there. And so my question was, what's survival? Well, they're going to tell you five years because that's survival for everybody, right? That's just like a, they put everybody in one big room. Um, so she's going over all the statistics and stuff. So my husband asked a good question, recurrence. And. She said, well, if she does lumpectomy, radiation, if she does lumpectomy without radiation, like she gave me all these different choices and he said, well, what about if she had a mastectomy, you know, like a double one. She said, oh, it drops it to like 2%. He said, we'll go with that. I said, WAIT a minute! I was like, wait, it's my choice! He said yeah, but no, I want you here. With us. He was like, so, so yes, he's to answer your question. He's very supportive. It was, he would never admit this, but I feel, cause I know it was uncomfortable for me. The very first time we were intimate after, you know, after all the healing and stuff, it was, it was strange for the first two times, first few times actually. And he would never admit that's the case, but you know, your partner, right. You know who you've been. And it was like, this is strange for you and me. And but you know, with time. And doing what my friend had asked, told me to do another breast cancer survivor. She's like, you know, just you and him explore your body again and everything. And when she said it, I’m like, that makes sense. So that did help, you know, but, um, but yeah, he's, he's very much supportive. He's, uh, He was like, yeah. And I told him, I, I'm not one of your marines. I was like, you cannot answer for me So, um, I said, but it did, it did make me feel loved and supported genuinely that he spoke so quick and was like, no, take them. K: Yeah, it's nice to know that they're behind it. My husband was the same. He was trying to zip his lip really, really hard and not have an opinion and let me decide. But then when I said that I wanted the second one off also, he was like, Oh, I'm so glad that you said that because that's what I would like to, because yeah, of course they care more about our, our health and longevity than the way that we look. That's great. C: So that was the extent of that. I just. I'm so grateful for the support of family and I always call it my village of people. Um, my family, my and the breast cancer community. Uh, we are a very, you know, unfortunately getting larger, but at the same time, I just think there's a unification within it. That is something I can't describe it. And a lot of us, I think we have a very difficult time describing it because, it's very hard to describe because we're just very linked together in a way that a lot of people do not understand. And it's one of those things that you would not understand it unless you went through it. And I don't want anyone to go through it, but I have to say I found a whole nother family within this community. K: That's wonderful. We just have a few minutes left, but if you have any advice for younger, uh, flat advocates or activists, um, coming up in, in the community or just folks dealing with capsular contracture or breast implant illness, do you have any advice that you would give them early on in their journey? C: I would say definitely continue to fight for what you know is happening within your body because only you really know. And a lot of people say, well, that “pain usually doesn't come with breast cancer” or “you're too young” or this or that, but no, you know, your body, I've, I fought for almost 20 years outside to say that I had cancer a whole 20 years, but I started having symptoms. So continue to voice your opinion, continue to, you know, if you don't know how to advocate for yourself, ask someone who's within this community to help you. That's what I did. I kept on asking friends that had gone through breast cancer and I hadn't even gotten diagnosed. I just knew the symptoms that I was have, I was having and experiencing. not normal. I began to learn from them and learn also how to advocate for myself. And if you don't know how, ask someone to come with you. If you go to an appointment and you may forget something, and this is big, whether you're in treatment or not in treatment. know, tell the doctor you want to record so that you don’t forget. I think that's a big, big one and make copies of all your records, not just digital, but print them out. I'm saying all of this is because I see so many people who do not have these, they haven't done these things. And then they are like, I don't remember this. I don't remember that. And so sometimes writing stuff down, you'll forget to write it. Cause it's just so much information coming to you. So ask them, can you record or ask another person to come with you. Just remember that your voice definitely matters. opinion matters. how you want to treat your body matters. And no one should tell you any different than that. And you should fight for the right to ensure that you are being treated respectfully because you can always get a second, third, fourth, fifth opinion. Um, and use that if you need to. And when it comes to advocating, if you feel—some people don't feel like they want to share their story, they, they, they don't want to share their story and that's your right too. But if you feel like you want to share your story, don't be embarrassed because someone out there needs to hear it. Either they are going through it or getting ready to go through it. don't feel like, Oh, nobody's going to listen to me. Somebody will listen to you. Don't, I know sometimes people get caught up in numbers. Well, I didn't get that many likes or I didn't get this or that. Don't worry about that. Just share your story, Share your story to help other people. So that's basically it for me. K: Thank you, Christina. It's been so great to hear a little bit more deeply about your story. Um, tell me about your handles on Instagram and, and anywhere else that you're at. C: Well, um, if you want to find me personally, you can look up Christina minor and that's M I N E R and Christina is C H R I S T I N A. I just always assume people know CH because people try to fit K, but, um, so you can find me at Christina minor, or you can find me at Our Scars Speak and that's on ig and it's both of them on IG um, Facebook. And then when it comes to YouTube, you can find me at “our scars speak” and also podcasting at our scars speak. So very, very simple. K: Great. And then you're the article to the women's health magazine. Is that still linkable? Can I find that? Okay, cool. I'll put that in. C: Yeah, if you can, um, you can look it up and post it underneath, but for anyone who's listening, you can look up Christina Minor Flattie or Christina Minor Women's Health Magazine. It'll pop up. K: Okay, great. I'll put that on the website for the podcast. It's www. abreastcancerdiary. com. C: Absolutely. Thank you. K: Well, I'll see you there. I will talk to you soon in our mastermind, and until then, I hope that you stay well this winter. Thank you so much.…
My new friend and fellow podcaster, Tina Conrad, is this week's guest and I couldn't wait to hear how she did it. She maintained a high pressure job as a manager in a fast paced fashion corporation right through breast cancer treatment and recovery. She is truly a warrior woman and I'm so thrilled to tell her story here. Transcript: Kathleen: My guest today is Tina Conrad. She's a senior planner at Carhartt, as well as the host of DJ Breast Cancer, another podcast. And she lives in Leesburg, Florida. Her breast cancer was stage 3A. It was ER-PR positive and HER-2 negative. She had both ductal and lobular breast cancer. And like me, she has a mom who has been a breast cancer survivor as well and has gone through that as a long-term survivor, both of them have had at least 11 years—in Tina's case and her mom even more years since any kind of recurrence. And I just wanted to talk to Tina today about what it's been like because I was telling her, I don't know anyone in my life in the breast cancer community here on the West Coast who's been strongly entrenched in the corporate business world and who stayed there throughout their breast cancer story. And she is someone who managed to do that. So I'm kind of in awe of her. I found Tina through the Wildfire Breast Cancer Writing Community and she's a fellow writer there. And I've heard her story mostly through her podcast and she was sweet to offer me a little bit of advice and a mentoring session when I was thinking about doing my podcast. So we know each other a little bit! Welcome Tina. And please tell us about your journey and how breast cancer entered your life in that corporate business world. What was your role at that time and how did it affect you? How did you exit and reenter? What was that all like for you? Tina Conrad Yes. Well, first, let me say hello, Kathleen. It's so good, so good to be here. I've taken a little pause or or a long pause. It's been a few years since I've done any recording, but it's just so great to be back and be a guest and no one else I'd rather be a guest with. So thank you. So, back to, gosh, back to 2013 when I was diagnosed, um I was a DMM, which is Divisional Merchandise Manager at a large retail outlet. um It was truly like my dream job, like we're where I aspired to be, you know, and I had a whole team of people and I was just recently married, um and like life felt really, really awesome, you know like where I just planned to be. and then you know I just stopped one day and kind of took um notice of my health because someone actually on my team had had a health scare, not not breast cancer related, but just had a health scare. And I was like, you know, like this breast of mine, like the nipples sunken in, something doesn't look right. And, you know, I kind of ignored it like for a few months. I was very much an advocate for breast health. I had gotten a mammogram when I was 30, when I was 33 because of my mom, I was very you know into all of that, but she had always had like a lump. And so this was like totally you know something different. And so having this health scare with someone on my team, I was like, you know, I'm just going to go get this checked out. And, um you know, it was a mammogram and then, you know, they call you back and, you know, you can just kind of sense and read the room that like things aren't really normal. They they weren't like the other times I'd had a mammogram. And so, um you know, that led to um like an ultrasound and then a biopsy. And I woke up from the biopsy and basically the doctor said, get your mom's records. That was the first thing I remember her saying to me. And so it was just very foreboding. So like I knew um things things weren't going well. So ultimately, yes, I received the diagnosis that you know I had breast cancer and it was pretty advanced on stage 3A lymph node activity. um fifteen I had 15 lymph nodes taken out. um So you know I did opt to get the double mastectomy just with my mom's history. um And then ultimately I did find out too, you know I had lobular which can often jump you know to the other breast too. So I felt very good in my decision you know that I had made um given my you know my family history and everything that had happened. um you know But I was i was busy. like I worked a lot of hours. you know I tried to plan my chemo around like the least intrusive time for work. I was still just very, very career focused. And everything changed. you know like Everything changed. um you know i I had never even taken you know more than maybe one week's time off you know in a row you know in my whole career. So you know with this cancer diagnosis, you know um with with surgery, I took several weeks off. Then with chemo, you know you you get yourself worse and worse. you know like The more you go on, it it's just harder. It's harder on your body to recover. And there was one night, like I woke up and it came following, ah you know, my my oncologist was really great, really talked to me just like a human being. And he said, you know, who's your advocate at work? And I was like, well, you know, my my boss, you know, she she looks out for me. She does. He's like, no, no, no, no. I'm not talking about your boss. I'm not talking about that. He's like, who is your advocate? And I was like, well, I don't have one. He's like, well, then I seriously need you to consider taking a leave of absence. And I think he was just so black and white in that moment that I needed. And um you know so that was kind of my first taking a step back from work you know and in focusing on myself and you know putting my health first because I had always put my career first. So like that just was who I was. I've definitely changed just in my attitude and viewpoint to work. I still have remained within the corporate world, but I'm no longer like leading big teams, um and I'm happy. And I just have a different viewpoint, I think, on life and you know what is my priorities. And that's okay and it's not to say if ah someone listening there you know keeps going down a path of career, that's great too. But I feel that you know um you do have to put your health for it first. And you're doing it not only for you, but the people that you love. And that just became a different priority through this whole process. So I was working with Sears Holdings, which was like Kmart Sears, obviously they're no longer no longer in business at the time of my diagnosis. And it was about two years that I had worked there that I just really had a calling that like my my work had to mean more to me. And Vera Bradley had a foundation on that specialized and in breast cancer. And so that was really important to me. in And you know we had so many great opportunities. I saw the foundation like where they do the research. It was so fascinating, you know just all the trials that they were doing. um so So I was really embedded you know not only within Vera Bradley, but you know i I did a lot of volunteer work with the foundation. So I worked there for nearly nine years. And then I just you know recently felt a need and a calling to do, you know again, something different. And so I've been in either merchandising or inventory about half of my career each. And um you know now I have a ah position that allows me to be remote. I've recently moved. um And I get a little bit more in the details of like the work and inventory. I don't want to sound too much like a nerd, but like I love Excel. I love it. So it's just it kind of gives me a little bit more different purpose. and I'm just really enjoying it. So it's it's just been good for me in terms of like a work-life balance and where I see you know myself and you know just trying to help out too. I have an aging mother-in-law and trying to help you know her more too. So hopefully this puts me in a position where like i can I can do more you know and be more with my family. Kathleen Moss At the time of your double mastectomy, how was it going back into the workplace with a new body or a changed body? How was your experience of that change in that corporate setting? Tina Conrad Yeah, I think it was less about, you know, like the breast side of it, it was more the hair, you know, like the hair is a big deal. So coming back, I took my leave, you know, after I'd had my mastectomy, I had been through um like 12 rounds of chemo and so my hair was just starting to come back and it was just like that peach fuzz you know real tiny you know hair and I remember going to a store to to work on some kind of project that we were doing and a customer came up to me and she was like I really love your hair and it was just like such a sweet moment that like you never know what a compliment can mean to you. But that in that moment, I know what a compliment meant to me. you know and And I could have gone into, like oh, I just had cancer, all this, all that. you know Oh, really, it looks crazy. you know But I was just like, I stopped. And I looked to her. And I was like, thank you so much. you know like And it just was really, I didn't have to be a cancer patient in that moment. you know I was just me with short, short you know growing here and it was you know just a beautiful thing. um but But it was, in general, it was a hard transition. you know like It's kind of like ah you know like your badge of honor. like you're You're so vulnerable coming back. um I've written about it within Wildfire too, because I definitely had um a boss when I came back to work at Sears. We had just come from some meeting and I'd only been back a few weeks and you know it was just her and I walking and she was like, um you know now that you're back on the saddle, I really need you to step it up. And it was some of the hardest, harshest words I've ever heard you know in my entire life, because I thought I was so prepared. you know And I really come back and done everything I could do you know to to retrain my brain, to like study these notes, you know, to be a student again and like, you know, cause you're, you're out for, I was out for three months, you know, with a leave. So it, you know, it's, it's difficult to get quote unquote back in the saddle again. It's, it's no easy feat. Um, so you know I just realized in that moment, I can't work for someone that can't acknowledge, you know, she had been kind to me like on other occasions, but like now that I'm coming back, you can't be kind. So it just put things in much more black and white than like I had kind of experienced before in my life. so So I went to go work for someone who had had had like a history of cancer in their own family and could acknowledge you know me as a worker, but also me as a human being. And like, that was very important to me. um And I think it's, you know, no matter what people are going through um in their lives, you know, it it doesn't just have to be cancer. It can be any kind of health or mental or any kind of, you know, issue. I think it's just important to you know to to be empathetic and to understand. you know You might not know all of the details, but I think we have to be kind and like allow people the space you know that they need to heal and to be understanding when people need time away from work. um you know that's just That definitely changed within me, you know within that experience, to then share it with other people and to always you know, give people more the benefit of the doubt, you know, because work will always be there, you know, but um the the relationships and the kindness and the way you make people feel, um it's just very important. um and and And something that will always, you know, go beyond you, you know, even your time on this earth is like how how you make people feel. Kathleen Moss You mentioned needing an advocate ah when you were first diagnosed and it sounds like you did find that in your second job after diagnosis. What did that look like? where Where did that advocacy come from and how was that powerful in your life? Tina Conrad Yeah, I love I love sharing and like helping other women you know through through difficult situations. um I saw that within my mom. She's not so much on the global scale, but you know she would take a woman aside and say, like oh, you're not sure what a double mastectomy looks like. I'll show you. you know And she'd take them to the bathroom and show. you know And she was just very kind you know to people who needed maybe you know just a kind word or or a moment. And so I think giving back was always very important to me. um And I feel like, you know, there's so many things we can do boots on the ground to help women, but also research is so important. So first and foremost, I always wanna know, you know like we're just coming off of October when we're recording this, but where's the money going to that helps women? Not just only for the short term. um Women do need help, like obviously to within a diagnosis, but what can we do to help the next generation not experience what we did, whether it be through vaccines, whether it be through new trials, metastatic breast cancer, there's clearly so many things that we need to help others with. And so that's very important to me. And so it's, it was not enough for me to just, you know, walk away from the community, I felt like I needed a way to give back. And so, um you know, whether it was speaking at various events, whether it was starting up a podcast, um it was just, you know, very important for me to, to help other women and then to, you know, to support them through whatever they're going through. Kathleen Moss Well, thank you for doing that. It definitely impacted me in a good way. Tina Conrad Oh, good. Thank you. Kathleen Moss How was your mom's openness about her mastectomy and the way her body looked after mastectomy? How did that inform your experience going into mastectomy? Tina Conrad I think it was very important. You know, she was very transparent with me. You know, clearly she believed because she she she was told by a doctor, you know, oh, just get the lumpectomy. You're young, you know, this will all be fine. um And then they came back, you know, almost in the same location three years later. So For us, it was very important you know that she shared that experience. She wanted the best for me. She wanted to do the most. you know That would give me the most longevity of life. and so you know she was very much an advocate for me to do as much as possible, obviously, too to be um as vigilant you know to to that. And the way that I think my dad loved her through it is I also feel like the way my husband loved me through it, you know which is to make a woman just feel beautiful in the body that they're in. And so i I feel very blessed you know to have a husband that loves me and told me every day of like every day of my cancer, whether I had no hair, whether you know um I was in the bathroom, whether I had you know this crazy bra on, you know like I just felt loved through it. And I feel like it's it's very important um you know to surround yourself with that kind of love you know of Whatever kind of support that looks like for you, but find people who will love you through it um Because you are beautiful each and every day of of your journey And so I think it's just important that you've you know, feel that and find people that tell you that as well She did yes, yes she did um, and I mean she looks great like she's she's doing great Kathleen Moss Did your mom have reconstruction of any sort? Tina Conrad Yeah, I just went to a softball game of hers today. She's 69 years old and she's out there you know playing women's softball, which is pretty amazing. you know So um you know just to see her and like you know living her best life you know and um it's great. So I think that she's you know so she's such an inspiration to me each and every day of wanting, continuing to take care, be active, um but also you know like help other women and you know um love them through it. Kathleen Moss So was her her experience having reconstruction probably informed your level of confidence going forward into reconstruction too? Tina Conrad Yes, yes, definitely. You know, things have even changed from the time that she had been diagnosed and then I was about 10 years later till when I was diagnosed. And then, you know, I talked to people now going through various things and things continue to advance, you know, each and every time. so you know, I think that is part of where the science is moving forward, you know, and and we need to keep doing what we can to keep that moving forward. But um, I'm, you know, it definitely gave me confidence that like, you know, hey, I can still feel like a woman, I can still walk into a room, I can still do all of this, you know, and, and feel my, myself, you know, and so, you know, that was a great example for me through all of it. Kathleen Moss Yeah, it seems like i I feel like if I put myself in your shoes or my niece who also works in a kind of corporate America retail job, I definitely would value my breasts more. I think I would have given deep flap or implants a little bit more thought probably. So did you get implants? Tina Conrad I did. Yes. Yes. Kathleen Moss And you're 11 years out. Tina Conrad Yeah. Kathleen Moss So have you thought about getting your implants replaced or have you gotten them replaced? Tina Conrad I have not. It is on my radar to talk about actually I have like all new doctors because I'm in Florida. So I think that will but probably be like a consideration. My mom still has like her original ones too. So, but yeah, just like, um, I want to be transparent, like have those, I want to ask more questions. You know, like, I think, um, that's what's maybe great about our generation and below is like, we ask the questions, you know, we, we probe a little bit more. Um, maybe we're a little skeptical, but that's fine. You know, like that just means you're taking your own health into your hands. And I think that that's important. So yeah, I want to do what's like best for me. I i don't know. I don't, I don't feel like I have to have implants like all of my life. I would be fine like with another route too. Um, so I just want to do what obviously gives me the healthiest outlook, um, on life in general. Kathleen Moss Mm hmm. Yeah, that makes sense. Yeah, I've met a few people locally who are in that spot where they're like 10 years out and they have been told in the past that their implants, you know, would last 10 years and they're just in that quandary of like, I don't know, should I get them replaced? And do I want to go through all that again? And it's an interesting little crossroads to reach, you know, especially as you're aging, this person in particular that I'm thinking of is quite a bit older than me. And she's like, I don't have use for them anymore. So maybe it's not worth the trouble. So interesting to think about all of those choices that we continue to have in this and this story. Tina Conrad Yeah, yeah It never, never, it kind of goes away, but it never goes away. you know oh So yeah, yeah. You never know. Kathleen Moss Yeah. I wanted to ask you about your spiritual life. Your podcast site has a really clear kind of progression into more and more talk of spirituality and especially within the Christian tradition. And I know that your spirituality, your beliefs and your faith have really informed the way that you look at your breast cancer experience. And so I wanted to ask you about um a scripture passage that you feel is central to your story and has given meaning to your breast cancer experience. Tina Conrad Well, actually, like just to set it up a little bit, I had had like a kind of a pain in like my arm, and so I had gone in to get some scans done. And then I was awaiting the results, because everything seems to take forever. And I had met my cousins, we had come from a very Catholic, um you know very religious upbringing. So to kind of meet them and spend time with them was was kind of very fitting. And there was just a beautiful church in this town of, we were in like ah Covington, Kentucky. It was very near um Cincinnati. But anyway, um my one cousin and I decided to go to Mass and like, you know, go in and to this just beautiful, gorgeous church. And so we sit down and, you know, I did want, you know, time to kind of reflect and pray because of, you know, everything that was going on in my life. And I heard this verse, like this was like literally the the only like one of the Bible things that they read, but they talked about um the woman who touches the cloak of Jesus. And in it says, “but Jesus said, someone has touched me, for I perceive that the power has gone from me. And when the woman saw that she was not hidden, she came trembling and falling down before him, declared in the presence of all the people why she had touched him and how she had been immediately healed. And he said to her, daughter, your faith has made you well, go in peace.” And this was like the passage that they read and my cousin just you know turned to me and she said, well, if that's not a sign, I don't know what it is. And so we kind of had a moment you know just in church too. And so it was just it was very special and obviously the results came back and you know and they were good, but I have felt throughout my entire journey, you know, God's hand in all of it. And, you know, even like leading up to my diagnosis, I saw the most beautiful rainbow I'd ever, ever, ever witnessed. And it was just this immediate sense of peace came over me. And it was feeling like um it it didn't even matter what it was right or wrong, or good or bad, or, you know, positive, negative, all that thing, but like, God was in control, and it was okay. And it was just this piece that like, I can't I can't really describe other than like I just felt, and you know, this overwhelming sense of peace. And so that was kind of like the start of my journey. And then obviously I did get, you know, the news that I had breast cancer, but I always felt that God's put me on this path um to help other women to, you know, to be a light you know for others and to share like his love. um you know and And for me, it felt um not like a punishment. And there were times where I was like, are you punishing me? like I did ask the questions. I did you know wonder aloud. But I felt going through it, I felt more like an invitation. Because I hadn't been as close you know to God, you know up it to that point I've been very career focused, you know, very very um Focused on things that like to me mattered at the time and and I think it kind of turned my whole world upside down with cancer But it was also a shot shine a light on many beautiful aspects and in faith was definitely one of them and so just to hear this passage and you know, in in this church, in this beautiful setting, it just kind of made it all feel like a painful circle. And, um you know, so so that's just been very important to me as my faith and sharing that, you know, with others and if you're not sure what to do, just, you know, pray or just ask God for, you know, for help, you know, and it's okay. It's just really a conversation with God is, is what I consider prayer. And so, you know, I, I do like, I have a Holy Bible app, like on my phone, I try to do various plans. Um, there's great things like when I was moving and I was really stressed, you know, I searched plans um you know that helped me with that. There's been times where I've had like difficult you know relationships. I've searched things for that. And it's just really helped point me to you know various scriptures that have helped me through through parts of my life. So I just encourage people you know to to have conversations with God and and it's okay. you know and And I do believe that God listens, and if you're open to it, um he's He sends signs. you know For me, they they definitely seem to come in forms of rainbows, um but you know I definitely see and hear of different things you know from Him, just it just it's a beautiful thing. Kathleen Moss Yeah, I can relate to the massive gifts of peace that descend on us in the most unlikely times and without even asking for it, without even knowing that it's possible, of course, because we're so out of touch with the spiritual realm, usually, at least I am. Tina Conrad yes Kathleen Moss And so, yeah, I love that. I love thinking about the spiritual world as a place of gifts instead of a place of guilt or shame, which is so often the case for us. I think we learn when we're younger you know about, well, I did. I have to speak for myself. like yeah There's a lot of fear. There's a lot of um judgment in the church. and And so I have a lot of injuries around that. And i I think that it's common to feel extra vulnerable as a breast cancer survivor and as a woman um in the midst of the common beliefs about “the gospel of health and wealth.” That if you do right, then God rewards you with good health and with lots of money. It's really common, I think, here in America. I feel like it pushes people's buttons to talk about God around health. Tina Conrad Mm hmm. Kathleen Moss But at the same time, there's there's so much of spirituality that can give us so much trust and an ability to live with the uncertainty that we have to make peace with some way or another. There's so much stress involved um when you're living in the breast cancer community, when you're not turning your back on it, but actually continuing to be there socially in it. Tina Conrad Yeah. Tina Conrad There's what I would consider people who are just so devout, you know get a recurrence to get metastatic breast cancer and it just doesn't seem fair. you know But I don't think we can think about things maybe it's not like this, in this case, this black and white, where I feel like God loves you through all of it. you know And so um it's just the peace that he provides you know through it. And so like that's that was kind of hard. um I had a ah ah friend you know that um had lost a son who was four years old, and I was really in that, in those days, like struggling with my faith, like, why God would you do this, you know, to this, you know, young child into this family. And it was, it really hurt me. And, um you know, it's just out walking and just kind of asking these questions, you know, like to God, you know, on my walk. And it's hard to like, it was just crazy. But this frog just came out of nowhere and started jumping and like, just being ridiculous, almost to the point where it made me smile and laugh. And I talked to my brother who was like really close friends with this family. He's like, that son loved frogs. like He just loved frogs. And so like to just put a little bit of levity on like a really tough situation, I feel like it's only something, like I can't explain that. like It has to be you know like something greater than greater than this world. And I've just had so many breast cancer sisters you know that I've lost. And it always seems like it's like three days later, I'll see a feather or something that's really reminiscent of like what they meant to me. and And so it's also given me peace you know that that they are someplace where there's you know a message or there's a sign or there's a bit of love or something you know that will help me through a hard time. And so that, I guess, is what my faith means to me, is just the sense of peace, you know even even in really difficult times. um And again, I don't know that it always has to be like four walls of a church, but it's just this relationship and invitation that God, you know I felt cancer provided to me that has helped me through so many experiences, not just cancer, but you know through throughout um the past 11 years, it's been it's just been a relationship with God. Kathleen Moss Yeah. Yeah. I'm happy to hear you tell that story. It makes me happy. I know it's it's tricky stuff and every single one of us has a different story to tell with regard to our faith. And you know, some people just get really triggered and really angry about it. But um I'm happy to be able to provide a platform for all of those different stories to be told and mostly just to hold it in mystery because as I get older, I realize how little I know and how little I can know. And it's nice to believe that someday we will understand much more than we do and now. Tina Conrad Yeah, yeah I agree. And I think we'll go you know we're all broken here on this earth, I feel. And I feel like there's a place where there's just true love. you know And you know I have not had kids, but I can only imagine like how a parent loves a child. like I do feel like that's how God loves me, you know is unconditionally, no matter my faults, no matter what I do, that I feel like his love you know is is always there. And so I think to go, in my mind as a Christian, I feel like to go to a place where there is just pure love, like that gives me hope, you know, each and every day. Kathleen Moss Yeah, definitely. There is a spiritual aspect to the community of sisterhood that we're a part of that I still haven't been able to put words to, but it is really powerful. it is the idea of solidarity of any sort, um coming through a struggle of any sort together with a common understanding side by side, shoulder to shoulder. There's nothing else like it that I've ever experienced and it is truly spiritual. um Is that part of your story and in terms of like how you created your your podcast. I feel like that's why I created my podcast is to transmit some of that out into the airways. Tina Conrad Yes, like the sisterhood. Like, it's amazing. um I've met such amazing friends, I've vacationed even with, you know, people who are breast cancer survivors. So, like, it runs deep, like, it's, it's really amazing. um Even when I started my podcast, um I met a great friend, Jen, who lives in New York, we've met, we've become, you know, not, not only like Instagram friends, but like in real life friends. So, I think it's the sisterhood is just it's just amazing. like it's like nothing you've ever experienced. And to have that podcast that I had, you know um to have others share their story and to watch their load just lighten, because for many people is the first time they were sharing their story like on on a public stage you know and so to see that lightning was such a gift you know for me to help, you know, um provide something where they could, they could share and they could talk about it and and they could feel lighter and freer. And then you know to to build this library of of women and then you know, I know other women's that like are just going through it now and to to be able to say like, hey, I'm here whenever you need to talk. But there's also this like library of of women sharing their stories, you know, in in various episodes that you can listen to it whenever is convenient for you, you know. um and And I do have a lot of people that will go through, you know, each and every episode and or or ones that sound interesting to them or are facing something that they're facing, which is what you're doing, too, is building this like amazing library of voices and stories and you know hope. and And we can all connect with them in in some way or way or manner. And so I think that that's what's such a gift is to share that light and that love you know with others and and to see that support like in action is really important. Kathleen Moss Yeah, definitely. I want to talk a little bit about your podcast so people know where to find it. It's called DJ Breast Cancer and you have a hundred episodes now. So a lot, a big library that folks can just binge right through. And like you said, it is mostly women telling the particular part of their story that centers around their diagnosis and how they dealt with that in the aftermath and It's a powerful, powerful podcast and it's it's such a great contribution to the breast cancer community. Thank you for that. Tina Conrad Thank you. Yes, the first season was my story. And then I started to share other stories. um And for a time, I was very scared to share metastatic breast cancer survivors. I just felt like it wasn't my voice to be shared. um But I really had met an amazing podcaster, Emily Garnett, who just touched me in my heart in so many ways. um And I just felt like you know she she died in March of 2020, so right as COVID was like starting. She didn't die you know related to COVID. She died you know due to breast cancer. But I just wanted to share their voices. And she she was just very much an advocate of how How can we build a bridge between early you know stages and late stages if we don't talk? you know And so I just wanted to do something to honor her. And so you know I did devote a whole season to metastatic breast cancer. and you know And it's very disheartening, because many of those guests are no longer with us. you know And that was you know just you know several years ago. And it's I think that's what keeps me up at night and makes me want to do more, makes me want to drive research, um because we need more time. We need more options. We need more choices. We need more trials. like All of that is so very important to me. You know, so that we we can honor those women and do more for them. Like, it's not enough. like And so we have to keep pushing the science forward. Kathleen Moss Yeah. Is Emily's podcast still available to listen to? Tina Conrad I haven't tried lately. I felt like many things kind of had started coming down, but it was called the intersection of cancer in life. Um, and she's just an amazing woman. Kathleen Moss As we wrap up, I just want to ask you what I often ask my guests if we have time at the end of each interview, which is what would you tell a newly diagnosed patient that you wish someone had told you? Tina Conrad Actually this is something that someone did tell me and it was very helpful, um which is kind of create like a central communication hub. Like it's very exhausting to try to keep up like, Oh, did I text that person? Did I text this one? Did I email, you know, all of this. So my aunt had told me like start a blog, like, or a Caring Bridge kind of site, like they have a free, great site, but it's just a place where everyone can have a way to access your information and it doesn't exhaust you. like Cancer is exhausting enough versus like worrying if everyone's like keeping up. like You have a place, they can go to it, they can find your daily or however ah much you wanna update. um And I think through that, like writing became so important to me um And I encourage everyone to write. There's so many feelings you're going to go through, and I think it's just important to write them out. It doesn't mean you have to share it. like I know we're both very much advocates of wildfire contributing and I encourage you to contribute and to you know do all of that. But if if you're scared or you just you're angry and you want to burn it, like go ahead and burn it. I don't really care. I just think that there's something so powerful about releasing a lot of that feelings and emotions. So there's kind of a practical sense of like sharing your, you know, updates with everyone so it's not exhausting you. But then there's just this beautiful part that comes with it, which is writing. And, you know, for me, it was poetry and rediscovering this love of poetry. I used to write poems when I was like in high school. um and And I just kind of rediscovered it. And and it just, you know, ah it it's just a great way to get in touch with your feelings. And for me, um it's almost then like I'm, I have more control over my feelings because I don't let them have control over me. And so it's this relationship of kind of give and take. And I'm like, okay, I'll sit with you for a day or two. Cause this is really bothering me. It's triggering me in some way, but I'm going to write it down and like, what, what is it? Like, what is really bothering me about this? And so, I try to definitely write it out. I keep a lot of journals, a lot of notes on my phone. um You know, you can just write it on a scrap piece of paper. You know, it doesn't matter, but I think that um writing is just so therapeutic. It's just very, very helpful and I encourage anyone. Again, you don't have to publish something or be this grandiose thing, but it's just very, very powerful to to have it and to even reflect back on things that you wrote from years past. you know So I'm 11 years out and to see things that how raw it was you know when I was going through it, um it's good sometimes to like kind of check back in with yourself and see how far you've come and that and that's great too. Kathleen Moss Yeah, the reason this podcast is called a breast cancer diary is that I started a diary video vlogging diary on Instagram and called it that and That was the most healing part of of my whole process. I needed a lot of healing. I was really angry. I didn't like the way that my surgeries turned out and the way that I was being guided by my oncologist initially. So I'm a huge advocate for writing writing things out or sharing, speaking things out. And just recently, I got a brand new appreciation for CaringBridge, which I hadn't really experienced very much but I had a friend with metastatic cancer. um She was in the breast cancer community because she was a pre-vivor when I met her and um had had prophylactic mastectomy but she ended up succumbing to a different type of cancer just this year in October. And she had been writing really regularly on Caring Bridge. And I was supposed to meet up with her in October just a few days after she died. And I had lost touch with her. And I assumed that she probably had passed and was just really longing to connect with her and hear about that that last period. And I could go back and read her entries on Caring Bridge and feel like I was connecting with her and her family through that. So that was a huge gift from her to me as her friend, just to have that closure. Tina Conrad Yeah. Kathleen Moss So I really, I'm a huge fan of that that technology now. And it yeah, it's wonderful that it is free. Tina Conrad Yeah, it's, ah it's beautiful. It's a great gift to your point. that just helps so many. you know like it It helps people through it and process their feelings too. I think people can comment. you know So it's it's a great way for everyone to stay connected in this day and age. Kathleen Moss And I'm glad you mentioned your poetry because I know you're contributing a book of poetry to my raffle giveaway that's going on now for the opening of season two. I'm offering for folks that are willing to send me a screenshot of your rating and review of this podcast, um enters your name in the raffle to win some wildfire magazine issues or Tina's poetry, and then some some wearable art as well. Kathleen Moss ah So be sure and and rate and review and send me your your screenshot at my email address at kathleenmoss@protonmail.com If you'd like to read some of Tina's poetry, I look forward to sending that out. Tina Conrad Thank you. Kathleen Moss Yeah, thank you for contributing! All right, well I will hope to talk to you again soon Tina and I hope that you're settling into your new home and really nicely and able to hibernate there this winter, even though you're in Florida. Tina Conrad It's such a, it's a different it's a different life, but it's good. It's it's really good. so So yeah, looking forward to um no snow and to, you know, more sunshine. Kathleen Moss Good for you. You deserve it. Tina Conrad Thank you. Kathleen Moss Talk to you later. Tina Conrad Thank you.…
This episode is an update from my personal story. I had a recurrence scare in November/Dec/January of 2024 and 2025, and this is the way it's sorting itself out. Always something to learn! --Kathleen Transcript: Welcome back to season two. Today's episode is episode three of this new season. And as promised last week, I will just be talking about my own story this week. I had a recent recurrence scare and I think it's resolving nicely. It's kind of an interesting non ending that I'm at right now. I really thought that it would be all understood by now, but it's still a little bit of a mystery. But, um, at least my pathology came back okay, so that's good. And I, uh, Wanted to share this, not because I think it's so interesting or profound, but because I think it's good. You hear a lot of stories of recurrence that don't end well or that end with cancer, and you don't hear a lot of stories of recurrence scares that do end well. And I think a lot of us keep our recurrence possibilities really silent because we don't want to worry people, and that's a really good intention and probably a good plan, but When we do keep them completely to ourselves, it can really eat away at us. And so I want to encourage people to tell their stories and be open and willing to upset people or worry people. It's been really hard for me to do so. So I'm not saying it's easy, but I just want to set that example for anyone else out there that struggles with this. I know a lot of us have quite a few recurrent scares in our journey. So it's unfortunately something that happens pretty often for a lot of us. So I'll tell my story briefly. Started in early November. I had a little lump about half the size of a dime and maybe two times as tall as a dime on my chest right in the center and thankfully it was in a really easily identifiable spot because I had still have a floral tattoo on my chest, and it was right in the center of one of the roses on my chest. And so I went to see my oncologist. I actually happened to already have an appointment with her set up, so I didn't have to scramble to set one up. And it actually was still there when I got there, and she felt it too. And as the days passed, uh, through mid November, it got a little more tender, a little bit more painful to the touch. And then suddenly, one day, it was gone. And she did order an ultrasound, but that ultrasound took many weeks to set up. I won't go into all the reasons why, but, uh, it was quite delayed. And before I even got to that ultrasound that she ordered, STAT, in early November, I was ordered an MRI from months prior, just on a regular schedule, to do an every other year MRI for surveillance. because I still have a little bit of breast tissue, um, possible in my Goldilocks mastectomy side. And so I'm eligible for an every other year MRI, which is nice because I really like the idea of doing surveillance as much as I can. So that came up actually before the ultrasound. I did finally get the ultrasound set up for mid December. Um, but, um, The MRI came up beforehand and it was in the first week of December and by that time, the lump had completely disappeared. I had no thought of it. I actually never really got worried about it because I've had so many little false alarms on my chest. I've had little bumps and lumps and, um, cysts and, like, Just tiny little skin things that are irritating. I've just gotten used to having those. I've never had them ever before breast cancer, but I think it's pretty common to have them after. And so I've had so many false alarms that I've just been kind of numbed to them. And so I wasn't worried about it, didn't think a thing of it. I thought I had completely resolved until I got the call from the MRI. um, assistant, the radiologist assistant saying that there was something on my MRI and they wanted me to come in for an ultrasound. So I said, well, I already have an ultrasound set up. So that's perfect. I don't even have to wait this time. So um, I did have that, assistant person who called me, read me the orders from the radiologist because I knew it would be really hard to get access to that. And I knew I'd be worried about that. And so that's something I'm really glad that I did. Unfortunately, she didn't read me the whole thing. She summarized it in her own words and got it way wrong. And so, which is a good thing. In the end, it was a blessing because I was a lot less worried. Um, there were actually two areas of concern on that MRI. One was in my chest wall and one was in a lymph node. So as soon as I heard from her about this, I went and felt for my lymph node, and I felt it right away. It was like the same tender kind of lump that I had felt in my chest, the same feeling had kind of migrated into my underarm. And from then on I felt it just about every day just to kind of keep track of it. And Pretty soon after that, I did have the ultrasound just a few days later, and so that was good. The radiologist that I go to for my ultrasounds now, is not a part of my hospital system. She has her own private clinic, so she runs her own radiology clinic and imaging center. And so, um, she always does this, which is amazing, but she offered to just go ahead and biopsy. it with a needle right on the spot, um, because she did see concern. She did, uh, rate it as a BI RADS 4, which is suspicious. She called it a lymph node. She said she would do a little needle biopsy, and I said, No, I really want to wait, talk to my oncologist. I don't want to jump into anything. I think I might want to have the whole lymph node out. Mostly because I, I've had a history of lobular breast cancer and I know that needles can miss that in biopsies. Um, and then later on I was thinking about it and I thought, oh, I know another reason why I said no. It's because I have a reaction to titanium and I knew she'd leave a titanium clip in, as a marker, and that would have been a really stressful decision for me on the spot. So it's really good that I had time to think about it. I had time to email back and forth with my oncologist who was on leave at that time. She was on vacation, but she was great at responding to my emails and I decided to have Or to try to have a surgical biopsy, which means you take the whole lymph node out as a whole with an incision, um, small surgery. And I couldn't find, at first I couldn't find a surgeon that would do that. I talked to one surgeon and her staff and she said no. And then the second surgeon I talked to was my actual first breast cancer surgeon. She had done my first mastectomy and she said yes. So we scheduled it, it was just a week later, it was a week ago. And a week and two days, a week and three or four days ago from now. And I had to go under anesthesia and it was just really clear. She said she remembered where it was. She didn't even like feel for it to see where it was. She just drew a little line on the edge of my, where my chest meets my underarm. And she did the incision. And at the end of my surgery she told my husband, I think I got it. I didn't see it, but all I saw was scar tissue, so I wouldn't have seen it. Um, but I believe it was inside. What I did get had to wait a week for pathology and just a couple days ago Pathology came back. I Went in to see her. I had scheduled an appointment to go over pathology and just before I went in to see her I did peek at my chart, which I am NOT Now, I am regretting that. I'm not thinking that was a good decision and I think in the future I will try really hard not to look at my chart to find my pathology report before sitting in a room with a professional because what it said was no lymphoid tissue detected. So basically it said nope. We didn't get the lymph node and I was flipping out. I was like, Oh no, I just went through all this surgery. I didn't anesthesia, all this recovery, you know, everything all for the sake of not getting a single thing. We missed it. It's still in there. I showed up to her office just a couple hours later and with that attitude of like, Oh, Dang, let's get an ultrasound and make sure it's still in there. And she said, Oh, we can't have an ultrasound. Um, you're all inflamed from the surgery. You'll be inflamed for at least a couple months. We'll do it in about three months. And I was like, I can't wait three months to find out if this thing is still in me. Can you do it a little sooner than that? She said, yeah, she could do it in two months, but no sooner than two months. So I was like, Oh man. And she said, I really don't think that it's still in there. I think it never was. There never was a lymph node in there. And at first I was like, I mean, It was in there and then it just went away right before surgery because I felt it in there. And she was like, no, I think it was maybe something else that looked a lot like a lymph node. And, um, just was really, really convincingly looking like a lymph node on both the MRI and ultrasound. And I said, well, all they found was fat and scar tissue on the pathology report. So how could those things be? And then I showed her my latest ultrasound. which had just happened less than a week prior to surgery. It was just three days prior and it said that I had blood flow detected to the lymph node that they were supposed to take out. And I was like, there's no blood flow. That goes to fat or scar tissue. Like that doesn't make sense, right? Like, and she couldn't really answer that, but I came out of her office feeling really, really confused. Like my head was just spinning and I knew I should be grateful that pathology said it was benign tissue. There was no cancer. That's the result that I was desperately wanting. But I, the fact that I couldn't understand the story and the narrative, I couldn't put it together. It was another puzzle that I couldn't solve, was really frustrating to me and I'm sure it would've been to anyone. And so that's kind of where I'm at now. Um, it wasn't as black and white as I thought it would be. For the first 24 hours after my meeting with her, I was thinking, I'm pretty sure there's still a lymph node in me and we're gonna find it in two months. Um. Then, you know, I went to bed and woke up the next morning and thought, you know, maybe she's right. Maybe there's some other explanation. I need to keep learning. I need to keep asking people who would know. So my oncologist might know. I'll talk to her about it. I have an appointment with her next week. Talk to other breast cancer survivors. Maybe they've had this weird situation where they had something that looked like a lymph node inside of them. And uh, One of the things I really started to do was kind of blame myself for not getting that titanium marker, which is kind of the protocol for these situations. You want to mark the lymph node before you take it out. And yet this surgeon had said she didn't need a marker. I was willing to get one when I went in with her, as long as she was willing to also take out the whole lymph node along with the marker. She said she wouldn't even need a marker. That was really reassuring to me at the time, but then I thought, oh man, how stupid was I if I'd only had a titanium marker put in? I would know if there was still a lymph node in me or not. It would be really clear that either what they took out with the marker was not a lymph node and we thought it was, or they didn't get the marker, so they didn't get the lymph node. Very black and white. This is kind of kicking myself and really appreciating the wisdom of protocol, but Over the days, the last few days, I've had more insight and I think now I'm realizing that I can create the narrative for myself. I don't know what's true, I may never know what's true, that may really drive me crazy but I can create a narrative of what is the most plausible, the most likely situation in light of the fact that I have a strong body that has incredibly strong markers right now. I'm not. having like high cancer markers or anything like that. All my inflammation markers have been low prior to surgery. So I have every reason to think that my immune system is strong, my body is strong, and my body is able to fight off anything that would be concerning. So worst case scenario is there was a lymph node that was concerning and it was starting to build a blood supply and that would have been really worth worrying about. Maybe when it started to build the blood supply and my body started to detect what was going on, my immune system came in and zapped it and it was all just necrotic tissue and it just showed up on the pathology report as necrosis and fatty necrosis because it was just that. that my body had killed the lymph node, and it was no longer recognizable as a lymph node. I don't know if that's even possible, but I definitely will run it by my oncologist. But that's the narrative that I'm going to tell myself, because I can. And because I have nothing else that is Conclusively true, that I can tell myself. Uh, which is so often the case in these situations. You don't get the black and the white, you get the gray. You get more complexity instead of more simplicity. And that can be frustrating. So that's kind of where I'm at now. I'm still kind of wondering if there's a lymph node in there. I can feel without pain and kind of feel around and I don't feel a lump anymore. So that's part of the reason why I'm thinking maybe it's not. It is really confusing to think about that. Last ultrasound report saying that there was some blood flow and I would like to talk to my radiologist and I'll get to when I get that next ultrasound. So I will get to pick her brain about that as well, which will be really good. So I'm very fortunate I have access to all the people that have all the information. Just need a little, wait a little while and get that information. Um, and just be patient. And then I'll maybe have an even more convincing narrative to tell myself. But I just realized, like, this time around, you know, in my mastectomy experience, I had this little journal. It was like a little travel journal that fits in your purse. And I used that to note all the facts and diagnoses and terms and research that was important to me and my journey and decision making. But I didn't write a narrative in it. I didn't, Tell my story and this time I have a bigger travel journal and I'm calling it my surveillance journal for the rest of my life after the initial occurrence and I'm gonna write in there all the facts and dates and figures and you know diagnoses and terms But I'm also gonna write the story. I'm gonna write it in my own words I'm gonna write what I believed and what I told myself Um, because I think that is even more important than keeping track of what happened in a clinical sense and a literal biological sense is what did we tell ourselves about what happened? How did it feel? What did I notice? What were the things that were standing out to me? Because my intuition is the most important intuition in the room and my story matters. Even if it doesn't make the doctors do things differently. In this case, it actually did. My story and my desire to have a whole lymph node dissection through surgery was actually granted. And that's another part of the story that I'm really glad for because I was heard and people took me seriously and, um, they did things a little out of the ordinary because of my story, because my story mattered to me. So that's something I brought out of this kind of flustering, confusing, um, recurrence scare besides the fact that I'm just grateful that I am a well individual now. I am not sick as I feared that I would be. And then I've also been kind of struggling with The idea of when these things happen, it's so freaking awkward to like think about who I want to include on my updates every week when I get new information. And I hate putting that email list together. And so this time instead of just assuming that my closest friends and family wanted to be on an update list and putting an email together and forcing it on them like I did in my mastectomy, which I think is pretty fair, This is not a mastectomy, it's a little less intense. So what I did is I waited for people to hear my story in person from me. And then if they said, keep me updated, I'd say, would you mind if I put you on an email list because I will forget to individually check in with you. There's too many people that want to be updated and I know I'll forget someone. So if you don't mind, I'll just stick you on that email list and I'm going to write an email update. And they'd always be fine with that. So, over the weeks between November and January, while all this was happening, I added people to that email list. And yet, I still felt a little bit, like, overly verbose, overly worrying them, maybe not having permission to give them all the nitty gritty details. And so, I've decided that in the future, another approach that I'm going to take is, I'm going to do, like, it's called a Caring Bridge blog it's like a, an online, a free online resource for people who are sick, who just write what's going on with them. And the people who really care, who really do want to know, will either subscribe to that and get a notification each time a new thing is written, or they can just check in when they get worried about that person. And maybe they won't get worried about that person until they die. But. My insight recently was my friend died. She was down in San Francisco. I was going down to San Francisco. I told her I'm coming. I'm gonna come see you. It doesn't matter if you're sick. She had metastatic cancer. It wasn't breast cancer. Um, and, and then my email or my text messages started to not getting replies. So like right when I left to go down there, I didn't hear back from her. And then I didn't hear back from her and I thought, oh my god, she's, she died. I know she died, I just feel it. And I chose not to check in with any of my friends who were on Facebook, cause I don't have Facebook on my phone, but, I figured it would be on Facebook but I decided to go ahead and enjoy my trip in San Francisco and wait till I got home and then I would ask a friend who was on Facebook, um, and I think I was in the airport when I asked my friend, have you heard anything about Susanna? And she said, oh yeah, I'm just checking now and it does say that she passed away a couple weeks ago. Anyway, Susanna had a CaringBridge blog and I had been checking it. I didn't have it set up for notifications, but I did know how to access it. And I'd read a couple of her entries just prior to my leaving town. And I thought it was such a gift that she made that blog, um, because I could look back as far as I wanted and hear as many details as I wanted about her sickness and her struggle and being in hospital and everything. Um, And I could only, you know, do as much as I want and no more, but it was so nice to hear her whole story from her perspective at the end of her life in a way that was concise and didn't exactly have an end because you never know. And she got a very intense infection at the last minute. So she didn't really know that she was dying, but I thought it would be nice to be able to leave that. It sounds morbid. It sounds like you're, you know, overly focused on the future maybe, but I think it is. It's kind of a gift, like, so I decided to start a CaringBridge, and I'm not gonna write much in it because not much is going on for me right now, but as I do work on how to resolve the stress that comes with these kinds of things, and I, my guess is that I'm gonna just kind of take my surveillance into my own hands and spend some money that insurance would not reimburse me for, and go to get a diffusion weighted MRI, which is much more specific than a typical MRI. Or maybe I'll find an amazing liquid biopsy that's actually proven to work. Some of them are showing promise, but a lot of them are just not there yet. So I want to record those things too, because I don't want to be like slammed with a shocking diagnosis the way that a lot of my friends have been. I want to be tuned in to what's going on. And I think I am to some degree, but It'd be nice to do so biologically and insurance doesn't pay for the things that would really help me do so in a way that would give me a lot of peace of mind. So at least I can track that on my caring bridge blog. And I think Then it won't be quite as shocking for me, and it won't be quite as shocking for others that really care to know what's going on with me medically. So that's kind of my resolution coming out of this. I'm not saying this because I'm sharing my CaringBridge blog with you. I haven't decided to do that yet. It might be searchable, but right now it's set as private, and I haven't written much on it anyway, so. Uh, if anyone wants to ask me to be added or to be given the invitation, absolutely ask me. My email address is KathleenMoss at ProtonMail. com. I'd be happy to add you, but I don't know that I'm willing to put myself on a searchable directory or something like that yet, because I'd like to be able to share really, really honestly. And, uh, Um, maybe do so there instead of on Instagram because of the way that the social media networks are headed. I'm just not as fond of Instagram anymore and certainly not Facebook. So I may just replace some of my deeper sharing and put it in that direction. And that's all I have to share today. Uh, next episode, actually the next two episodes will be interviews because I took this little pause to talk about myself. I thought I would go ahead and do two interviews in a row next week and the following week. And they're both other breast cancer podcast hosts, uh, Tina Conrad is no longer a host. Her podcast is no longer active, but there are like a hundred episodes. So you can listen to her at DJ breast cancer and Christina Miner is also hosting currently, she still has an active podcast and hers is called Our Scars Speak. So if you're interested in those, um, and want to listen to them in preparation for my next two interviews, uh, go ahead and look those up. They're great podcasts. I've really enjoyed both of them and I will talk to you next Sunday when I'm interviewing Tina. Talk to you then.…
The topic of breast surgery and skin conserving surgery has been a real trigger for me in the past since my first plastic surgeon kept refusing to take the extra skin off of my chest as I requested. The fact that I could talk to Lisa about this without getting emotionally worked up was one good sign--and then I had two other chances to talk publicly about my flat denial story in the past month as well. When it rains it pours! Transcript: Happy New Year and welcome to season two of A Breast Cancer Diary podcast. Last week, I aired my first episode of season two with Lisa Sylvester, founder of the project Still.Me or “STILL project.” She is just now coming out with her new book or two different books, actually the compendium and the anthology of her photography and storytelling project, called "Project Still Me". And the website is project-still.me if you want to look it up, um, it's now available for sale. So on the day of the last podcast episode airing, it was the day before it was available for sale. So if you heard that podcast right away as it aired, you may have been too early to purchase her two different books. So just want to remind you to go back and do that now if you intended to, those books are ideally for the eyes of patients and surgeons, and we talked a lot about the idea of reaching out to surgeons to help them to understand the second half of the story, the half of our lives that happens after we interact with them. Uh, a lot of breast cancer survivors have different things that happen, um, whether they explant or go on to really appreciate their new bodies. Their surgeons don't always get to hear about it. So Lisa's mission in this project, which was an amazingly ambitious and talent filled project of mostly photography and, publishing and graphic design,. This is meant for the eyes of surgeons, especially, and hopefully, we can all come together to partner with these surgeons of ours to get it out in the world and allow them to use it as a tool in their consult rooms prior to surgery. And all of the women in the STILL anthology are, flat. They went flat either after having implants or just straight to flat after a mastectomy. And so it's just another alternative to the very, strongly pushed option of, of having implants. That's so common right now. Lisa has been working with Kim Bowles from Not Putting on a Shirt and getting connected to a very special conference coming up this spring called ASBRS. It is a special conference that is just for surgeons. At this time, unlike some of the other breast cancer conferences, They don't allow advocates into this conference, so there's not an open door for advocates or patient advocates, um, to come in and have a voice. So, unfortunately, we flatties won't be able to attend that conference unless we're doctors, um, especially surgeons. I think, even if you were a doctor and not a surgeon, you probably wouldn't attend that conference. But it is in Vegas this spring, and the hope is that surgeons will be at least open to the idea and will see some of the images in large scale format. Um, they're going to have them in big posters at the conference so that they're hard to miss. They don't have to walk up to a booth or a table to look at the book. They'll have, they'll see the posters in large scale format and hopefully some surgeons, um, some of them already are big fans of going flat. They can appreciate going flat, but a lot of surgeons are really pushing implants, and there's this kind of common narrative that's going around. I'm not sure where it started, but, um, there's a belief among surgeons that women are way more, mentally well in the long run if they have implants because their bodies look more like their natural bodies or, the bodies that they had prior to mastectomy. And that is, A really great assumption. I mean, it's a natural assumption that I would agree with if I hadn't been through this, um, and talked to so many women with implants, many women with implants are very, very happy with their implants, but many women with implants are not and the truth is that many and most of us who are flat are very happy with our new flat bodies. And I actually had a chance to testify to that in person, um, with my knees knocking at the big breast cancer global gathering in San Antonio this last month in December. I wasn't planning to take the mic and talk to a room full of surgeons, but I just happened to stumble into, um, a talk, uh, about a couple of different studies and I didn't realize going in that the studies were about this topic of mental wellness post mastectomy and, with skin sparing and tissue sparing mastectomies being preferable for women's wellness and mental health as the argument. And I haven't looked at the details or the methods of the two studies mentioned. They were studies out of Japan and the UK, but the outcome of those two studies was arguing for saving as much breast tissue and skin as possible for the sake of, of long term mental health and wellness of women patients. And that kind of, you know, triggered me a little bit and made me wonder if those studies were well administered or if they were asking leading questions, which, you know, those kinds of studies almost are guaranteed to be doing. If you agree to do that kind of study, you're kind of going in with the expectation that you're going to want to praise your personal doctors who've saved your life and saved you from breast cancer instead of criticizing them and the work that they're doing. So, It's really hard to be objective as a patient in that kind of study. It's a questionnaire based study, usually, and it's not done personally. It's not done within the context of community, which is where a lot of our body image healing happens in the context of community. But if you're doing a little survey and you're isolated and alone and you haven't had conversations with other survivors about body image issues, then you may not have even broached the question before. So it's a much deeper issue than what these surgeons were, um, you know, optimistically thinking. And the sweet, sweet man who was presenting the data was just so well intentioned, I couldn't possibly be critical of him. I did wanna tell the other side of the story because he was really arguing for pressing women to save as much breast, tissue and skin as they possibly could. And so many women do not want to save their breast tissue, number one, because they don't want to fear their cancer coming back in that breast tissue, which is a legitimate fear. Um. And so I got up to the mic and said, I am just one person, but I'm very happy with my flat body. And I want to tell you that there are a lot of us who are pleased after going flat. There's a lot less anxiety, a lot less fear of recurrence, whether that's legitimate and rational and based on data or not. It's true. And without any breast tissue, I feel lighter and more comfortable in the world. And I. didn't take long to get used to my body and I'm heterosexual, female presenting, married to a man who is male presenting. And I'm very, very happy with this flat body of mine. And I had to fight for it because my surgeon wasn't willing to give it to me when I asked twice. And the third time I went to a new surgeon and got what I wanted, which was flatness. And of course, you know, I was super nervous, shaking. I didn't want to stay in that room a minute longer than I had to. And the man that I was addressing was very gracious and kind in his response. His motto was, think twice, cut once. Meaning, think twice about taking that extra tissue and skin and then cut. And I told him, I would like for you to think twice and ask once and cut once, but asking is really important. And that's something that was not truly done for me and so many of the women that I've talked to that have been denied flatness. So that was a big kind of marker in my life as an advocate and, activist. I was really uncomfortable the rest of the whole day, walking around knowing that some of the people in that dark ballroom that I had spoken up in, probably knew me where I hadn't looked at their faces. And I felt really uncomfortable in one sense, but also very gratified. in another sense. And actually this last week I had another really amazing opportunity to speak up about my experience of flat denial with my former surgeon, not the plastic surgeon that denied me flatness. That would have been extremely intense. And emotional for me, but the other surgeon who was in the room, my breast surgeon, who I think knew that I wanted to be flat both times. I'm not 100 percent sure that she knew that because most of my conversation about wanting to be left flat was with my plastic surgeon in a one on one consult with her. So I wasn't really resentful towards this breast surgeon of mine. But I didn't know if I'd ever have a chance to talk to her in a clinical setting again. Unfortunately, I've had a little recurrent scare, and so I did have a chance to talk to her this last week. And I told her very clearly that I was very unhappy with the outcomes that I was left with on both of my first two surgeries with her and that plastic surgeon. And I asked her if she still used that plastic surgeon, and she said she did. And so I pressed her to really think about it and I gave her some literature from Not Putting On A Shirt and Stand Tall AFC to point out to that surgeon in particular about how women who say they want to go flat really want to look, we want to look flat without any extra skin. And so I was very direct with her and kind, and I think I got my point across, and I still trust her enough to go into surgery with her. Uh, this week, I'm going in on Thursday for, uh, a surgical biopsy, uh, for at least one lymph node. I feel another lymph node kind of, you Coming out too, so I may have two lymph nodes that are taken out, but we'll see what comes out of that. I thought that my own personal breast cancer diary was over, but we may be having some diary entries about my continued experience here soon, both on my YouTube channel, Estrogen Diaries, and here possibly, because I don't want to leave you in the dark about what's going on with my personal diagnosis and my own story as I'm telling other people's stories here. So the other thing that I talked to Lisa Sylvester about last week in the episode that aired on Sunday was her BRCA2 mutation, and I also wanted to address that. Two, two topics I wanted to talk about today. First was breast surgeons and plastic surgeons in particular. Second one was the BRCA2 mutation because I hadn't had, I don't think I've had it a guest yet that had um, prophylactic mastectomies because of the BRCA2 mutation. And I talked to Lisa a little bit about her kids and the fact that they would eventually get tested for that same mutation. Just wanted to describe a little bit about what BRCA2 is. There's BRCA1 and BRCA2. They're both mutations in a very good gene. BRCA is not a bad gene, it's a good gene that we all have. Um, you And if you have a mutation in it, it means that gene is broken. So the, the gene itself is a, a cancer DNA repairing gene. So it repairs the DNA that would lead to cancer or further cancer growth in specific cells. Um, it's kind of a, a self fixing bit of DNA. And that gene is, is a really, really life giving gene. And for whatever reason, some individuals have developed mutations that can be passed down from father and grandfather, mother and grandmother, and they don't hit everyone. Of course, it's not guaranteed. They're going to be passed down to you if your mother or your grandmother had them. But once you know that someone in your family has had them, it is very wise to get tested these days. And not everyone, but some individuals who are testing positive for that mutation. So that broken. bit of DNA of genetic, um, machinery do choose to have prophylactic mastectomies, which is a preventative mastectomy, to ensure that they don't ever get breast cancer by taking out all of the breast cells, the breast tissue. And it also puts your, uh, ovaries at risk of ovarian cancer, that mutation. So some women go as far as having their ovaries removed as well. And that's a really intense and personal decision. Um, it's something we may talk a little bit more about with others who come on the podcast. But for now, I just wanted to define what that mutation is, how it works, uh, why it's a little bit scary and why so many women are sacrificing their breasts because of it. There have been. Celebrities that have sacrificed their breasts because of this mutation. And I'm sure there are celebrities that have not done so. Because there are plenty of people who have the mutation that have chosen not to give up their anatomy because of it. It's a tough decision. Something that you really should talk to a genetic counselor about because that's what they're trained to talk about. And probably just a regular mental health therapist would be a good one to talk to you about it as well if you're interested and you're testing positive for BRCA2 or BRCA1. In the future, I'm sure we'll learn about other mutations that are passed down. Germline mutations are what they're called. Um, there are also a different type of mutation that happens inside your particular tumor and your particular cancer cells, um, that are not passed down from your mother or grandmother, and those are called somatic mutations. So that's pretty confusing and really basic if you're interested in breast cancer science and studying some of the genetic studies that are going on right now. There's so many of them. A lot of why our cancers mutate and develop strength over time. And come back and recur and develop metastatic strength is because they have that ability to mutate somatically. So within the cell, within the tumor. Um, so it's something that's happening just in that little microenvironment of the cancer. And we don't understand why or how that happens, and we're developing drugs more and more to address each mutation. which is really, really hopeful. Um, it's amazing how fast we do move considering all of the barriers in place that keep us from moving fast in developing new drugs. I'm always in awe when I'm down in San Antonio at that conference that I went to last month, learning about all of the drugs that are being tested. in a given point in time. I also learned a lot about, um, a, a really fun study on DCIS that I'm super excited to follow. It's still very, very young in its development. It's only two years old, but they did do preliminary data reporting on it. I'll, I'll do a video on that soon on my estrogen diaries, YouTube channel. So stay tuned for that. The next guest that I'll have is Tina Conrad from. The podcast called DJ Breast Cancer, and she's no longer running that podcast, but she has lots of episodes and seasons to listen to, and I'm a fan of that one. It's just another storytelling podcast telling individual women's stories in their unique ways and unique perspectives. So we'll hear from Tina, Her interview is mainly about, um, being a professional with cancer, with breast cancer and staying a business professional with breast cancer. Most of us bow out of our high intensity jobs as breast cancer survivors, but some of us stay with them and she was one that stayed with it. And I'm just so in awe of that and I wanted to hear more about that part of her story. So she'll be my next guest, but not necessarily next week. I think next week I may do kind of a last minute update about my own cancer recurrence scare and how it turned out. I should know. Um, hopefully I'll know my pathology results by then, and hopefully this will all be behind me, but I can kind of tell the whole story from start to finish, um, in the next episode if there is anything to worry about and tell you my next steps and my plan, uh, just to let you know kind of more personally what my December has been like, it's all been within the month of December that I had an MRI and ultrasound, and now I'm having biopsies, so I will keep you up to date in my personal story in the next episode, I'm hoping, and in the meantime, I will be On, estrogen diaries, making videos about the San Antonio Breast Cancer Symposium. So, watch that if you're on YouTube. And I will see you in one of those places very soon. Again, Happy New Year and stay well.…
My instagram friend, Lisa, had a vision less than a year ago for a visual way to show the how the flat community has become a healing movement for women who don't want the usual reconstruction options post-mastectomy, and this week it is coming out into the breast cancer space as a work of art! I love that I can share the story of a vision come true and share it on the day before the end result comes into the world! Find Lisa's project on her website here: https://project-still.me/ Transcript: Kathleen: My guest today is Lisa Sylvester. She lives in Richmond, Vermont, and I've been following her on Instagram for probably about a year now. We're fellow Flatties and proud of it. And she's the owner of a company called Interrobang Design. She and her husband run this company. Small business in Vermont, and it's a graphic design studio, and she has a new project coming out of this graphic design business that I'm so excited to talk to her about today. I haven't really dug in with her about it just because I wanted to save the conversation for the podcast. So this is really, truly fresh, new information that I'm super excited to hear about. Welcome Lisa! Lisa Sylvester: Hi. Thank you. Well, I'm happy to be here. K: You're a previvor. So Tell me a little bit about how you found out about your BRCA2 mutation L: Yeah. So I have been having breast cancer and ovarian cancer scares like throughout my adult life and my OBGYN worried about me and at one point she said, you know, what do you think about doing genetic testing just so we can know if we are really have something that we need to be aware of, uh, you know, could inform my healthcare kind of thing. And I was like, yeah, let's, let's just find out. And I thought it was going to be negative. I don't really have a strong. Um, family history of cancer. In fact, no breast cancer history at all and only one, um, ovarian cancer, um, person in my family. Um, my genetic counselor thought it was going to be negative two. Um, and so we were all surprised when we came back with a positive for BRCA2. Um, so I'm the first in my family to find out about it. which was the can of worms everybody warns you about with genetic testing because that meant I now had to inform my entire family about this new, new this news. K: And how long ago was that? L: That was three and a half years ago. And I was pretty, I'm pretty, I'm a research monger. So like when I found out about it, I was like, okay, what are we going to do about this? And I knew what my options were before I had my consultation with my, um, doctor and, and, um, it was my genetic counselor and an oncologist actually, and, um, they were surprised that I wanted a mastectomy. They actually tried to talk me out of it because they said they're really good at catching cancer early. I thought, well, I don't actually want to catch it. I would rather like nip it in the bud if we can possibly. So I felt like, um, the mastectomy was the right choice for me. Um, and they also pushed implants right at that initial consultation. And I wasn't sure that that was right for me either. And when I told them I was interested in going flat, that set off alarm bells for them as well. K: Had you ever met anyone that had had a mastectomy? L: Um, so, um, interesting story, when I told my mom about this, she was in her 80s, and my mom is a total caregiver, she likes to help people feel better, uh, but she was, like, had some dementia, and hearing loss, and as I was talking with her, I wasn't sure she really knew what I was saying to her, um, but all of a sudden she got upset It's up and ran outside and started talking with her neighbor who was trimming her shrubs for her. And she came back in and she said, Suzanne, my neighbor had a double mastectomy and she'd be happy to talk with you. So she didn't know how to me feel better herself, but she knew who to put me in connection with to do that. So she marched me out to the driveway conversation with this woman who I barely knew about mastectomies and she showed me her scars and, and we had a long talk about it and she was the first person I met. in real life that had had a mastectomy. My grandmother, my mother's mother, also had one in her forties, but I was told it was not because of cancer. And I learned from, again, healthcare professionals that back then it was not uncommon for women to have mastectomies for other reasons. Um, so she had a radical bilateral mastectomy and wore prosthetics after that. K: When Suzanne showed you her scars, was she flat chested or was she, did she have…? L: She was flat chested, but she wore prosthetics. K: How did you feel when you saw her scars? L: You know, I had been looking around online, so they kind of, I knew a little bit of what to expect and they kind of felt right in line with that. So I wasn't surprised really to see them. It was like confirmation. Maybe it was like, Oh, okay. Yes, this is indeed what this looks like. K: And how did you find the flat community for the first time? How long did that take? L: Um, it didn't take long. So I first found, um, photos. Of flatties, just on the internet, just random searches um, and then I found not putting on a shirt and actually use their surgeon, um, directory to find a surgeon and, um, and then I think I found the Instagram groups, um, and I was like, wow. Here it is. There's where all the answers are. Yeah, it was pretty compelling. Because, you know, the, um, the story that we're fed, right, is that, um, women need to have breasts. That women, like, women and breasts go together, right? They're not separatable, if that's a word. But, um, that we can't be whole or healthy or beautiful without them. And it was those women that I found on, um, Instagram, I told a very, very different story in them. I saw strength and empowerment and beauty and femininity and, um, confidence. And I was like, this is not that trope. This is something very, very different. it was super compelling. And I knew once I saw that, once I found that community, that that going flat was right for me. K: Did you find them using hashtags or just, did you stumble upon them accidentally or? L: Hashtags. K: Mm hmm. And describe for our listeners that haven't experienced this phenomenon. What does it look like? What did you see when you went on to these different accounts and saw photos of women that had gone flat? L: I saw an incredible amount of bravery. Um, people that were just sharing their truth with, um, pretense. So it was about showing exactly who they are, showing their bare chests, telling their true stories, um, without doctoring it up to look pretty. It wasn't like the perfect Instagram photo. They were raw and real um, and it was just very, very compelling. K: What are some of your favorite accounts that you remember from way back? L: Um, so “not in the pink” was one of the first ones—just a fashion icon and what's not to love. Um, and then, um, I don't, I don't, I'm, I'm really bad at remembering people's handles. So I'm not going to be able to come up with a lot of others. But there were a handful that were sort of, um, very forward, meaning that they were just posting frequently. So seeing a lot of their, their content and, um, just really really liked what they were saying, um, liked the whole sort of body positivity stance that they were promoting, whether that was intentional or not. Um, it was people that were showing themselves without makeup, like I said, regardless of their size or their shape or else was going on, they were just showing their bodies as they were. And um, there was an honesty there that was just really, really important. Um, moving. K: Have you ever met someone from the flat community in person? L: Um, so this is actually a good segue into my story… so we have a small group in Vermont, a a small Facebook group, and I had actually met with a Flatty before I had my surgery and it turned out that she was my neighbor's cousin, um, my neighbor's niece. And, um. And I, she was so helpful. We sat and had coffee together in Richmond and, um, she, I, she's like, ask it, ask any question, just whatever you got, throw it at me. And she was so helpful and, um, really reassuring. And I remember leaving that meeting thinking, holy cow, flat is really flat. Like her chest was so flat. it was startling to me. Um, and then, And then I was like, okay, it's okay. Like it was a little bit of a shock, right? flat, flat was. Then I met some other people from that group. We try to get together periodically, but we're dispersed throughout all of Vermont. So sometimes it's hard to for us to kind of like, logistically get together, but we've had a couple of, um, you know, get-togethers, maybe a handful of people, but I've like, craved. Wanting to be around other flatties in real life. Like I've always wanted to have that meeting a “flattie in the wild” experience. that just hasn't happened. And, um, I don't know. It was like last spring I got a from Stand Tall AFC saying, Hey, you should join us for one of our walks. And it struck a chord with me because I was like, I really do like crave this connection with other flatties. I am not a real big, like event person. So like the walk itself didn't really tick any boxes for me. I'm not like some of these big events and retreats, they don't really appeal to me. But, um, but I was really curious about this walk and, and wanting to be around other flatties. So I reached out to this Facebook group in Vermont and. Kind of said, Hey, anybody want to go to Massachusetts three hour car drive for this walk? Um, and I was expecting a no, because we've historically just had hard time gathering people together. somebody was like, yeah, I'll go. So we were off and running. And so me and another woman went down to Massachusetts and did this walk in Lowell, Massachusetts. And it was super empowering. It was. It's rainy and cold and, you know, we're walking topless for three miles throughout Lowell, Massachusetts. And, um, but, but just beyond all of that, it was just the conversations that we had together and the sort of instant connection that we had with each other that was really beautiful. Um, but it was at the end of that walk where one of them said, you know, I really wish there was a billboard right there in Lowell, Massachusetts, talking about aesthetic plaque closure for breast cancer awareness month. And I think I was just then becoming aware of the work that's needed be done around AFC, around it being offered consistently about it being done well for people. and so that really struck a chord with me when she said that and I thought, well, you know. I don't really have an interest in doing a billboard. We don't have billboards in Vermont. And I kind of like that. And, um, but I'm a designer. So I was like, there's lots of ways that we could create awareness first that apply closure. that's where this whole project started. K: Okay, let's get into the project. It's called Still. L: It is called still. Yeah. K: Tell me about the name. L: Yeah. So, I'll give you a little bit of history, um, and how it connects with the studio for us. So, um, we, we do in our studio, what are called “no money fund projects” where we—with other creative colleagues we work with and know and love—usually on a non client based project just for fun. No one gets paid, we get the band together, we do this great project and we create something really beautiful. so my thought was, instead of a billboard, let's do some sort of publication, let's make it a no money fund project. Let's invite my creative colleague friends to see if they would want to be part of it. And um, Yeah, and this publication can be used to create awareness of a stuffed fly closure. That was the idea. There was nothing more to it than that. It's not an especially meaty idea, but it was sticking and kind of nagging at me. And so I put the, put the idea in front of a couple of my friends and I was, again, kind of expecting a no from them. This is a little different from the normal No Money Fund project. It's, It's, you know, it's an advocacy piece. It's a heavier topic. It's personal. I just wasn't sure whether it was going to strike the right chord, but I got an immediate and resounding, let's do it from them. So the next thing was to just, to really start working in fleshing out this project and, and the name was the first part of that. had kicked around a couple other names, which I cannot even remember anymore what they were, but this one just kind of stuck with me. Okay. And, um, it became a working title initially, and then I was like, this, this is it, this is it, because it, that's what this is all about, is showing our truth of how we are still, and, um, in hindsight, five months after the fact, six months after the fact, um, the right name because I cannot tell you how it's resonating with people, both within the breast cancer community and beyond, um, people get, get the idea, get the message. K: I love that it's, like when I first saw the word still, I was thinking still photography and then, you know, of course, then you realize as your kind of messaging gets out that you're talking about a different meaning of the word still. It's actually the meaning of remaining, remaining, um, certain things that a woman thinks she might lose when she goes flat. L: Yeah, yeah, That's exactly it that we are still ourselves and that's exactly what society and the medical community has told us we won't be right. or that's been the case for for many people. But, yeah, so just stuck and that was that was that so 1 of the 1st things we did, or the 1 of the 1st things that I did to sort of move this project along was to put together a style guide for the photo shoot. to develop the branding for the project and. You know, this is in my wheelhouse, what I do, and I was kicking around different, different ideas and trying out different directions and everything, and the logo that, that is today, um, just was, again, I, I've had this experience with this project where things are just sticking or pestering or poking at me, or just like raising their hand and saying, it's me, it's me, and the logo kind of did the same thing, like that logo, you know. I don't know. It just, it was the right logo for the project. K: So tell me how you gathered women the first time you did a photo shoot. I don't know how many photo shoots you've done? L: We've only done one and it was, um, it was a little hair raising for me. I'm not a big social media person, but, um, I was working with Christy Raymond at Humankind Casting . And she's STILL’s executive producer and she's got a lot of casting experience. And I was kind of thinking she would just kind of take the reins and go with it. But, um, I had this connection to the community and she's like, you know, really, we should be doing this through your social media. So I was like, okay, here we go. And I was looking for six to twelve flatties for the project. Six was my minimum for getting it off the ground. Eight to twelve was kind of the sweet spot where I felt I could get the diversity that I was looking for. when I thought about this publication. In the hands of a person who's making reconstruction deci decisions in that exam room with their, with their surgeon or physician, want them to see something that they can identify with. So I wanna show women of all ages, sizes, and colors. So as they're flipping through this, they're not seeing what anesthetic closure looks like, but what it looks like on a lot of different people. And, um, so that again, they can identify it with it. And when I think about like the hope that this project can provide. It lies there because when you, you know, when you're going through something difficult like that and you're on, uh, you're feeling pressured to make decisions, there might be a timeline that's factoring into it, it's big and scary, um, finding that one thread of hope that you can grasp onto can mean the world, right? So eight to 12 was kind of where we were going. And again, we just did the casting through Instagram and Facebook. We ended up getting, I'll add that it was, um, we were shooting in Worcester, Massachusetts. We had this gorgeous studio that gave their space to us for the shoot. And so I was expecting a local response because again, it's a no money fund project, so people would have to be able to get to the studio and to the shoot on their own means. And, um, So I was expecting local and I'm like, I don't know how many flatties there are near Worcester, Massachusetts. Like, what's this gonna, how's this gonna work? We got an international response. We K: Oh my goodness. L: All over the country, all corners of the country, and as far away as Europe that submitted casting submissions for this project. K: Wow. I recognized Farhana from Texas and I saw Linda from Massachusetts, so I didn't know how far it went, but that's crazy. L: It is crazy. We have, um, we have someone from San Francisco. We have two from Texas. We have Florida, Michigan, Illinois, Pennsylvania, uh, Massachusetts, Connecticut, and Vermont. Yeah. K: Was it a one day shoot then, or? L: A one day shoot and shooting 12 people in one day is a big, a big task, getting them through wardrobe and hair and makeup, having their photo sessions. And then the other piece of that day was that we actually interviewed them. So, um, they were interviewed after their photo sessions and those interviews became the foundation for the text for the book. K: Mm hmm. Is it a text heavy book? L: It is not. So, um, a photo heavy book. The, so the photos are. I can't wait for photo for people to see these photos. photographer is an internationally published fashion photographer, and his eye, his vision is just incredible. We're, I was just so thrilled that he said yes to doing this project. And so when we were casting, we had asked people, what, what are your top three still phrases? How, what are your top How are you still yourself? And so everybody has their still phrase. And then what we did was we had them work with our wardrobe stylist who put together looks that exemplified those phrases. then when they got on set, we actually had a huge piece of Plexi with the still logo printed on it. And then we had people actually paint their words on the Plexi, um, to complete their still phrases. And then, uh, so we had, know, we had these people who, who had their, um, The sprays that really resonated with them, right? They're painting it. They're wearing a look that complements that and then we're taking pictures that just really pull all of that out. So when you, for example, um, we have a flatty Emily from San Francisco who is still fierce and if you can just take a glance at that photo and get fierce from it, like those messages just come through so beautifully in the photos. So the text is, really You know, you marry a compelling story with a compelling photo, and then you've got a sort of a powerhouse of a, of a communication happening, right? Um, and these stories, so we ended up doing two, two publications. Um, it, when we saw the stories and the photos, we realized this needed to be more than just this little booklet that I was envisioning. we did, we designed a 132 page art book, basically. Um, called the still anthology that shares more of their story and in their own voices. So it's not heavily edited. It's very much their own voice, um, and it shares the good bad and the beautiful and they're very real. and then in the compendium, which is the smaller booklet, that's a 36 page booklet. That's the book that's for healthcare providers. that book is, um, even lighter text. So we've, um, really focused that text to be about like what influenced people's decisions to go flat, what that transition was like for them, what challenges they had around going flat and what, what life is like for them as a flattie. so, um, so it's more of a synopsis in that piece. K: Okay. Are you planning to sell the anthology as a way to raise money to print the booklets? Yes. L: We are so, um, yeah, so this will all be launched on January 6th. We have a store that's going up on the still website. We'll be selling the anthology and the compendium and digital downloads for the compendium. And, um, what we're doing for healthcare providers is we're offering the compendium, um, at no cost for the digital download and printed, um, copies at cost. So, um, if they wanted to buy, you know, a stable of, of compendiums to hand out to their, um, patients, we can get those copies to them. at a discount. Um, yeah, yeah. And the, and because this is, this project isn't, isn't about making money, the any proceeds that we make from selling these books is really just to cover our out of pocket expenses. K: Cool. And it's a black and white project. So that makes it easy to print out in black and white. L: Well, the photos are black and white, but the book is not black and white. K: So when you give a physician a digital download, do you picture them printing it in their office? L: So what I wanted to do was really just make this as accessible as possible and remove as many barriers as possible for people to actually use this. um, the reason why we're providing a digital download is because we can just give it to people, right? And they can spread it however they want and they can either share a QR code or, um, to their patients for them to download it themselves. They might want to have a handful of copies that they just have in the office for people to look through there. they can, they can manage it any way they want to depending on how their practice works. Um, so really, like I said, just trying to remove as many barriers and make it accessible to them to be able to get to it and actually use it and share it. K: And then the big question, how much energy and what kind of strategy do you have around getting physicians to actually use this tool? L: So, you know, that was the big question. I was like, I am a designer. I don't really know how to do it. Like, this project has been, like, has pushed me out of my comfort zone so many times, like, over and over and over again. And, um, You know, the pathway is just opening up. So, like, if I'm patient and ask the right questions and all of that, I'm getting the answers that I need to move forward. with distribution, you know, I was thinking it was going to be largely grassroots, like, we would get this into the hands of the flatties that I'm connected with through through social media and ask them to take this to their physicians and start spreading the word that way. That was about as far as I got with it. Um, and that's happening. I already have people like saying, Hey, can you, me know when this is ready. I'm going to take it to my doctor. Like people are lining up to do that. I have physicians that are hearing about this, that are saying that, yes, I want this in my office, let me know when it's ready. And then, um, can I share some top secret news? K: Yeah, please. L: So, uh, we have been invited by the ASBRS, the American Society of Breast Surgeons, to exhibit at their annual conference in Las Vegas in the spring. So this is going to put this book in front of 1, 700 breast surgeons. K: Wow. Are the ladies in the book going to be there? L: Well, we've got all kinds of things in the works for this, for this event, and none of them have been formulated yet, but I wouldn't, I wouldn't be surprised if some of them came. Yeah. K: I would. Yeah, that's so exciting. Oh, I just want to say right now, thank you. That is, I mean, it's one thing to have a beautiful book full of photos as a flatty post surgery, but to imagine The possibility that I could have had that book in my hands pre surgery... It is such a gift. It is so important and so rare and it takes a lot of forethought and those professional skills that you've gathered, those professional people that you've gathered in order to carry that off well. So thank you so much for that. L: My pleasure. This has been a real joy to work on because, obviously, that personal connection, right? Have I found out about AFC on my own. I cannot tell you how many people have come up to me and said, I had to find this on myself, it shouldn't be this hard, or I was talked out of this, or I was told. two weeks ago, someone told me that, um, they're, they were interested in going flat, and their surgeon said no because, um, studies show that the outcome for women is better if they have reconstruction. Meaning implants or flap surgeries. And you know, that's, that's part of the problem. That's part of the problem, right? So I've been talking a lot with, um, Kim Bowles, not putting on a shirt and she's showed me studies and everything. And there are actually studies that conclude that it's psychologically harmful for a woman not to have breasts. There are other studies that disprove that but that thinking persists, right? And obviously I kept, when, when that woman told me that, I was like, okay. That's a surgeon who's still thinking about that old study, or still stuck in thinking about that old trope that we're fighting against. Um, because the truth is different. Um, what we've experienced is different. And that's not to say it's this way for everybody. I know that there are women that go flat and then decide to, um, get implants later, or do flap surgeries later. There's no one right way, and I'm not pushing aesthetic block closure as the thing to do. But what I'm pushing is It's being given the option. So even if somebody gets this book and they look at this and they see these beautiful photos and they read these compelling stories they decide that flat is not for them, that's great because even then we have helped them see all the options and make an informed choice. The STILL statements that the models have made really apply to most women who have had mastectomies. They have the same kind of insecurities, regardless about whether they are going to still be in a certain way or fully feminine and all the ways that they see themselves before surgery. K: So I think the message is still really powerful. It's a little bit more stark, maybe, um, being that the women, the models are breastless, but the messaging is very poignant and meaningful, I think, for all of us. L: Right. And that's what I mean, like this is resonating with people outside the breast cancer community because anybody who has been through a significant challenge like breast cancer or these big surgeries. Right. There is that concern, like how, what's my life going to be like afterwards? So what am I going to look like? Am I still going to be me? And so that, that, that thought that you are still, um, after going through hard things is incredibly empowering. K: Definitely. Yeah. I feel like I've been tabling this last October, September, October for a stand tall AFC. And for the first time, I've been engaging with women who have implants, but had never even contemplated going flat and weren't given that option. And I would say a good number of them are perplexed by The idea of going flat, um, and then there's also a great number that I'm surprised each time that have implants and are very unhappy with them, not just because they're sick, like typical kind of breast implant illness kind of symptoms, but they just don't feel themselves anymore. And they're desperately looking for an excuse to solve that problem. And I never imagined, I mean, I had so many reasons to go flat. And I had so many physicians telling me I, I should just get implants, but I, I'd never entertained the idea of implants. I always knew I was going to go flat myself, but I thought I would feel disfigured afterward. And to be able to tell these women that going flat and feeling themselves will not also include that necessarily that stigma or that belief that you are not whole or you're disfigured I just love being able to share that message with all my heart, you know, it's just, it's such a big truth. Um, I think it's, it's not a natural truth. You wouldn't naturally assume it if you were sitting alone without exposure to other women that have gone through it, but it's so important. L: You’re making me feel like, so anxious to get this book out here because these, these, these exact things that you're talking about are spoken about in this book, like this idea of like, like one, one young woman. So I have like, an incredible age range. So our youngest in the book is 31 and our oldest is 70 and, you know, it's different. Like, I went through this in my late fifties. I had already had my kids. They were out of the nest. Um, So my considerations were very different than somebody who's in their 30s who might be a family, right? And, um, so anyways, like, we have a young woman who was planning a family and, um, she was very, she's very athletic and she, she says, I thought I was going to be like a Frankenstein. Um, so the people, exact, are actually really beautifully voiced in this, in this book about implants, about how am I going to look, am I going to hate myself, am I going to, am I ever going to adjust to this, and how do I adjust to this, and all of that is captured in these 12 stories. K: How did you pick the women? I imagine you had a lot to pick from. L: We did. So, um, so again, I was diversity that I was looking for. So I was looking for that, that really lovely cross section. The one thing that we did not do that. If we do this again, I should say, when we do this again um, I didn't really ask for their stories about, you know, how they got to be, to be flatties. So I had asked whether they were survivors or previvors. I'm trying to remember what else I asked them, but, but we didn't ask for any specifics about their, their journey in that respect. So when we got to the interviews and, um, and afterwards we were reading them, I was like, wow, these are all like, everybody's got a different takeaway. Like it's really amazing. And actually, my daughter, my youngest daughter, Nora, she's, she's, she's led the interviews and is doing the copywriting for the book. And, um, she, she said, boy, mom, you and Christie did a like really amazing job, like casting these 12 people. They're so different. Like divine intervention right there. Like, I don't know, even know how that happened because, um, it was really, truly luck of the draw from that perspective. But we were looking at things from an aesthetic standpoint. Like I wanted people with different hair, like I didn't want all blonde people. I want it like to be different hair colors and different haircuts and different body sizes and types and different, even different scar types. Like, you know, some different scars heal differently on different people. So we wanted to show like, what does the. Thin line, you know, incision scar look like versus a keloid scar. Um, so wanting to be able to show those differences as well. So we were looking at more of those sort of differences. visual nuances when we were selecting than we were story. K: But it came out that the stories were diverse, too. Not only were they diverse, so they, they, their commonalities for sure between them, you know, several of them, but their takeaways are all really unique and really compelling. K: So you said you're maybe going to do this again. What is that going to look like? L: Uh, well that's, that's to be determined, but like it just has become clear to me that this is not a one and done project. Um, so the, I have. I've been getting a lot of feedback from people in the breast cancer and flat community about the project. you know, comments about things that I've posted or messages that people have sent me. And it has been 100 percent positive. for one. So 99. 9 percent positive. person told me that they were frustrated that they couldn't get to the photo shoot because they were, they were, um, they had some health concerns and they had some financial limitations that prevented them from being able to come to the shoot. And so it was an accessibility issue and, um, they said, you know, my story is, deserves to be told. The truth of the matter is we cannot tell every story. There's no way we can, we could do that, which is again, by that diversity is, is important, is but, um, but we've only told 12 stories and. I think there's, there's more to share out there. So I'm, I'm seeing this as volume one, what we're working on right now, and volume two will come down the road. And I'm not sure what that's going to look like. we've talked about the idea of maybe even getting surgeons involved in the project to, to actually show, show a surgeon and a patient. I, I don't know how we get around HIPAA and all of that, but like, we'll figure that out. like to, because one of the things that I heard, um, Is that surgeons don't see this. They do their surgeries and they move on and they don't see what life is like for people afterwards. Um, they, they know what the studies say. They know, um, tidbits that they hear from people, but for them to actually, like when I was talking to ASBRS about this project, you know, they were like, we don't see this. This is really interesting for us, us to see. And wouldn't it be interesting for the surgeons to be telling their side of the story as well. Um, so, so I thought, I thought that's interesting. So we're gonna put that in our back pocket for now because I don't have the bandwidth to take that on. But like, so something like that, but but it could also just be a very different to the book from a visual standpoint. It could be. focus, we could broaden it to include other reconstruction. I'm not sure. I'm open to anything right now, but right now it's a flat advocacy piece and a flat advocacy project. So whatever we do is going to stay rooted in that. We'll just have to see what path opens up for a volume two when we get there. K: Do you have a dream of making any of the STILL shots, uh, a billboard? You were talking about billboards…. L: Not a billboard, but we are doing a poster show—a traveling poster exhibit. So there will be 12 international size posters, which is about 36 by 50 inches of each of the flatties and there's going to be a video companion piece that goes with that and we're going to be working to get that into galleries and museums around the United States. So, so that's going to be If you think of it in two parts, like, or if you think of like the mission of STILL, creating awareness of aesthetic flat closure and promoting body positivity and flat visibility, um, the books do do all of that, but I think the posters do it from a completely different perspective and are gonna hit a completely different range of audience. Um, and that's where I feel like that, that normalizing flat and the body positivity and the flat visibility, those pieces are really gonna be You know, accessed through this poster show. K: And what kinds of galleries and museums are you targeting for that? L: I again, I'm, I'm open to whatever, whatever. We're just going to, we're going to start, I think, focusing on New York and Boston just because we're too busy. East Coast right now and see where we can get it from there. so I'm very much focused on getting the books released on January 6th right now, and then once that's, those are out and about then I can, um, shift more, more of my energy towards getting these posters exhibited. K: Great. Yeah. Hopefully listeners will have connections for galleries and museums that they can turn you on to. That would be great. Are the posters pretty durable? Are they like vinyl or cloth or what are they made of? L: I think I'm going to print them on canvas. I still need to do some research about what's going to be best. I'm thinking about like what's going to travel best, what's going to pack best, all those sort of nuances about putting a show like this together. So there's a lot of logistics and little details to take care of that on the sort of functional side of things that are beyond the, um, you know, what does this look like and what did these posters actually communicate and say to people? K: That's great that you have all the participants from so far and wide, too, because they can do a little bit of promotion locally for their own communities, too. L: Yeah. Yeah. And we have a, we have a PR person on our creative team, so she's, she can help with that as well. And yeah, we're just going to work our networks and see what we can dig up. K: So fun! That's great! Wow. Well, I wanted to ask you a little bit more about your personal story. We talked about the fact that you have two daughters. I don’t know if they're grown daughters or teen daughters, but tell me a little bit about how you worked through with them whether or not to get tested for the BRCA2 mutation. L: When I first found out, you know, they flood you with information about what to share. I got a packet from my genetic counselor that had all the information and all the results and multiple copies of it that I could just parse out and, and send to family members and everything, which we did. And um, so I have a son and two daughters and we let them all know that, that this is a thing in our family and that they can get tested if they want to. And um, And, um, my older daughter, she's 28, she just, she did, she got tested right away because she was at that age where if she was positive, she would have started, um, screening at that age, and she thankfully was, was negative, so that's great. My youngest daughter is 24 and she is waiting until next year to test because again that's when she would start screening if she's positive but, um, and then my son is holding because for him, he would, you know, the big, the biggest concern with him is prostate cancer and protocol right now is that they would start screening for that when he's 40 and he's just turned 31. He'll be 31 this week. So he's, he's on hold right now. Plus he was like going through a move and a big job change at the time. So it just wasn't the right time for him. But, so two kids have not tested yet. One has, and I've just been really open about my, my own, um, thinking about all of this and why I've made the decisions that I've made and understanding that they are going to make their own decisions and that's fine. But lets just share the information, right, and be very open about it and so that they can feel comfortable asking questions or, I don't know, just, there's no need to be closed about this. Let's just share what we know and share what our experiences are and, and then support each other through whatever decisions we, we choose to make individually. But my daughters, you know, they saw me go through this mastectomy and my youngest actually came—none of the kids live in Vermont anymore, so one's in New York City, one's in Boston, and my son's out in Seattle. When I had my mastectomy, my daughter who lives in Boston, my youngest, came to visit me and everything, so she saw, she saw what you go through after mastectomy and, and all of that, and you know, and she's, she's told me, you know, if I brought a positive, I'm probably going to do the same thing that you did, so, like, for me, it's about being a role model for my kids, and, and that's, and being a role model is not about making it all look easeful and pretty, it's about showing how it really is, and being honest about it, and being vulnerable. And so that's what I've been trying to do, do with them. And so when they said, when I told them about STILL, this project and this photo shoot, they were like, “we want to be there.” And I was like, great, I'm putting you to work because like, again, this is a big task to get 12 people through this process in one day. You know, there are a lot of places where things could get tripped up. And so having extra hands just made sense. Nora is, uh, she had just graduated from Mount Holyoke college with an English degree. She was the perfect person to do these interviews and do this writing. Hannah is, um, she manages a restaurant in Times Square and she's got a hospitality background. So she, that's what she did. She kind of was our hospitality director and just made sure that all the flatties felt comfortable and safe on set. I realized that I was bringing in 12 people, well 11, and myself, who had been through some pretty traumatic things and I wanted, I realized that the very photo shoot itself could bring up big feelings and so I wanted to make sure everyone felt safe on set and comfortable on set. We put together this community agreement that outlined like, should something not go well, like should something be said that feels harmful to you, or should, should something make you feel uncomfortable, this is how we're going to approach it, and this is what we're not going to tolerate, and this is how we're going to do things, so it was all kind of spelled out ahead of time. That community agreement was included in our photo release that we sent out and had everybody sign, cast and crew signed it. So everybody was on the same page. So Hannah was really there just to make sure, like, people were okay and felt good and work were doing well. And, um, and then she ended up sort of doing double duty and doing some photo assistant work while on set too, because it was, it was a very busy, bustling day. K: Has your daughter dealt well with the kind of anticipation of waiting a year and wondering What the future will look like? L: I think so. You know, I think for her, um, it just she has clarity about what she would do if she was positive. And, um, so I think she has, I don't, I don't sense that there's fear there. I'm sure she'll be happy to know and just know one way or the other. Um, but she, but I don't, I'm not sensing any sense of, uh, and in the way at this point. K: Luckily it's something you can get paid for pretty easily now, so, L: Yep. Yep. So that's all good. I think I think we're okay there for the time being. We'll just take it as it comes. Right? That's the best we can do, it was good to have them at the shoot and not only that they see, I mean they know my story, After my surgery, when I was first able to take off those bandages, the drains are out, you're finally feeling human again. um, I remember thinking that I was really going to want to wear prosthetics. And so I was really eager to get my prescription to go to the place and get my real prosthetic. Athleta sells these really nice, it has a really nice, um, mastectomy bra and really inexpensive inserts. So I bought a set of A cups through D cups to just explore and see what I would want to wear. And so I remember after my surgery, my daughters were visiting and we were trying on all these foobs. Like, it was, it was just so fascinating to me that how, like, not me they were, they were just, um, they felt awkward. I was like, I didn't like, do I have them in the right place? Like, is it supposed to be up higher or further? Like I can't tell, this doesn't look right. um, so we ended up wearing them as shoulder pads and butt pads and we're just like playing with them and stuff. But like, and we never, I've never, ever worn them. I'll donate them to somebody, but like, um, just became really apparent that I'm flat now. That's who I am. And, and I don't need to put things in my shirt to do that. That felt almost dishonest to me. Like I'm not being myself. I'm not being true to who I am by wearing prosthetics. That's me. Everybody has their own feelings about that. But, um, but that's where I was. But boy, did we have fun playing with them. K: Aww, I love that. Yeah, I feel exactly the same. Even as a uni, I had, for nine months, I had a single double D breast. And I always just longed to be free of that prosthetic. Um, I did get used to using it, but I never felt good in it. And I felt so much better when I had my second mastectomy. And I did have those, those, those Athleta inserts I never wore. I got A's and D's because I thought D's would be matching my natural size. Never wore any of them out of the house. It was just so not okay with me. L: Yeah. It's, it was startling to me because I was so sure that's what I was going to want. And it really just, it didn't resonate at all with me after the fact. So, um, K: Well, we're getting low on time, but I want to ask you one more thing. You mentioned the dynamic of having all 12 of those women in the photo shoot. And I, I regularly volunteer with Daniel Rogers here in Oregon that does photo shoots with survivors and mainly flatties. And she intentionally has women come together two and three women at a time for a photo shoot because she believes that the power of that experience as a shared experience is really, um, healing in itself. Like it's, it makes the photos more beautiful and joyful. So do you have any magical moments to share about the dynamic that was created that day? L: Oh boy, let me tell you. Um. That day rendered me speechless for weeks afterwards, um, literally could not form words or sentences to describe what happened on that set. So the night before the shoot, um, we loaded into the studio, we got the set put together, we did some test shots, things like that. then we did a meet and greet, we had the Flatties come that evening. Not everybody could come, but most of them did. And it was the first time that we had been together. Many of these people I hadn't known on social media, but never had met in person. And, um, and some of them I hadn't known at all. And the moment they set foot in that studio, I knew them. It's like we knew each other. We were connected. We were bonded. We were family of the best kind. And it was not like anything I've ever experienced before. It was profound. Um, it was it, and it, and it wasn't just the flatties, like the whole crew felt it too. Like it was just, that studio just with love and compassion and joy. so that shoot was not about trauma or loss at all. It was about joy and positivity and love. Um, you know, it was a long day. We were, we were shooting for You know, close to 12 hours maybe. And, um, there's a lot of downtime and they could have just been sitting around or they could have left or come back or, know, whatever. But basically there was just this little huddle of flatties that stood at the opening of the set that were just cheering on whoever was having their session at the time. it was loud and it was joyful. And it was just, I don't know, I, I've not experienced anything like it. And I, and I imagine this is what people feel. People experience when they do go to these retreats and other camps and events and I had not experienced that before. Like I said, I'm not kidding. I was rendered speechless. I was, I was a mess. I cried for three weeks afterwards! And, and, um, to put it in a little bit of perspective, My, my executive producer and photographer have been in this industry for 35 years, and they've worked with really incredible clients over those years. And they said at the end of the shoot that this was the best shoot for their careers. That says something. That's, that tells you how impactful that day was. So the shoot, which was just meant to be a means to an end, to get these images and stories, to create these publications, shoot itself became a thing. K: Powerful. Yeah. I imagine that just having Lynda there, she's been to so many flat gatherings in person and experienced so much love and given so much love and that kind of experience just travels with you and it just continues to be imparted, you know, wherever you go, I think. And that's the wonderful thing about the flat community. It's, it's such a safe and affirming place to be. And it's so important to see each other in person for that reason. Wow. L: Yeah. Someone had their first flat hug with another flattie. Um, someone took their shirt off in front of other people for the first time. Um, one person left and said they threw out their prosthetics because they felt so loved and so confident after going through that experience that it changed their mind about wearing prosthetics. So it was profound. I don't have another word for it. It was just, it was life changing. It was beautiful. K: Oh, I love it. I'm so glad you did that. It's it's great to hear about all of the photography, um, experiments and projects that are happening all over for all kinds of breast cancer survivors and just how healing they are. L: Yeah. And what I love about, about these is that, I mean, obviously there are a lot of beautiful professional photos out there of flatties. Um, I feel like these strike a different chord there. Um, I think they're going to feel fresh to people. I hope they will. I think they will. They're very, they're very stunning and compelling. Um, don't know something about the black and white. That's really striking. Um, I'll be curious to see what you're going to think when you see it. K: Yeah, well, share, share all the information with us. Tell us your handles. And then also, most importantly, how can we get a book L: Yeah. So the best place to follow this project is on Instagram at project still me. so I'm at, so this is flat and I started. of started talking about the project there and it's become such a thing it grew up and got its own Instagram. So project still me is, um, the Instagram handle. And then, um, the website is project hyphen still dot me. um, we're going to be launching a store on the site on January 6th and the books in all their versions. So the printed versions of the anthology and both the print and the digital downloads of the compendium will be available on the, on the website on January 6th. K: Do you know how much the compendiums will cost? L: The anthology is $40. The compendium is $15. (Corrected post interview!) K: Well, we'll be lining up and getting some for each of our booths at the Sand Hall walks. L: Yeah. That's the other thing we're trying. We're, we're, we've got a couple of organizations that are going to promote or offer links to this work through their sites and things like that too. So, where I think it's going to be a many, many hands make light work situation where we'll just tackle this from all kinds of angles and get this into the hands of the people that can make a difference. K: What are the names of those organizations? L: Well, not putting on a shirt is one of them. So Kim's been a super ally, great friend. She's just been so amazing and, um, and sharing information with me. And, um, and so they're going to be putting this on, on their website as well, and we'll see where else there's another, there's a magazine in Texas that is interested in 50 top cancer centers that they send their magazine to quarterly. we're looking for opportunities like that. And just, um, You know, just different, different ways and angles to get this into the hands of people are consulting with, um, women about reconstruction options. K: Thanks again, Lisa. This is such a great gift and I can't wait to hear what comes next for you in this area. L: Thank you. Thanks for the opportunity to share about it.…
I'm jumping in here with a quick holiday tip in between seasons. I highly recommend "After Breast Cancer Diagnosis" if you're in need of a mentor... or if you're feeling ready to offer a mentoring ear to a newer patient. Find them at https://abcdbreastcancersupport.org . Transcript: I'm checking in today in between seasons because it is the holidays, and the holidays can be a pretty stressful time of year on a normal year, and this being an election year, it's extra stressful for some of us. And I wanted to share a resource. I am not affiliated with this resource except for the fact that I found my mentor through them. If you're struggling and you need a breast cancer mentor, encouragement around your breast cancer story and just someone to talk to one-on-one, I recommend going to an organization called After Breast Cancer Diagnosis. Their website is https://abcdbreastcancersupport.org . And that's where I found my mentor. They are incredibly responsive and very personalized in their approach to matching breast cancer patients with mentors. And at the time a couple of years ago when I went to them for help, they got me matched up with someone just like what I asked for right away, someone with my same diagnosis and someone with my same interests and advocacy. And so if you're really struggling, ah especially around triggers with regard to your breast cancer trauma, I just wanted to recommend this if you need it. I will be back in January with season two, and I have some great guests lined up for that season. And I hope you have a wonderful holiday season in the meantime. I'll talk to you soon.…
Last week's interview with my fellow advocate Leslie brought up a few things that make Metastatic Breast Cancer Unique. In today's episode I'll reflect on things like "lines of treatment," "progression" and "dormancy" when it comes to mets and I'll also talk about some of the ways that science is progressing for metastatic Lobular Breast Cancer patients. Don't forget to rate and review the show and if you want to enter for a prize for doing so, email a screenshot of your review to me at kathleenmoss@protonmail.com Listen and Subscribe on: APPLE PODCASTS - SPOTIFY - AMAZON Or watch on YouTube: https://youtu.be/agbu6QjDiXs Support my work by making a donation here: https://liberapay.com/abreastcancerdiary/ This episode has not been transcripted.…
My friend and fellow lobular breast cancer awareness advocate, Leslie Pifer-Pien joined me on the podcast this week to talk about her first seven years as a metastatic invasive lobular breast cancer patient. Leslie was diagnosed de-novo, which means, she didn't start with the mild kind of cancer but went straight to stage four, or "metastatic" cancer. She's taken it in stride, but finding the right oncologist isn't easy with Lobular Carcinoma. Lisen in as we chat about all that she's learned. Transcript: K: My guest today is my friend and local advocate, Leslie Pifer-Pien, who lives in Camas, Washington. She was diagnosed in May of 2017 with de novo metastatic breast cancer—lobular breast cancer. And she has a history of working as an electrical engineer as well as a college professor here in the Portland area with exchange students. Leslie and I just met about a year ago, and we worked together on the local advocacy teams with the Lobular Breast Cancer Alliance as local advocates, meant to be working in person together. But most of our contacts have been online still, but we did meet on national or global Lobular Awareness Day a couple of weeks ago for the first time in person. And that's when Leslie agreed to come on the podcast. Leslie is my first guest who is a metastatic breast cancer patient. I've been trying so hard to get my various friends who are metastatic to come on and they have all tried, but things have come up and gotten in the way. And I'm sure I'll have many more guests who are metastatic, but it's really important to me to feature the stories of patients who are metastatic because we just don't hear their stories often enough in the breast cancer community and I just feel that they are so, so very important. So thank you, Leslie. It is a vulnerable act to come on and speak about this journey. And I know you have a very unique one to share about. So thank you so much for being here. It means a lot to me. L: You're welcome. Thank you as well. K: Well, I wanted to ask you a little bit about your experience of discovering, without the medical professionals discovering, that you had breast cancer. And I know this was, not a typical way of discovering and I know that you're a spiritual person and I love to talk about spirituality on the podcast. So I'd love for you to tell the wild and crazy story of how you came to suspect that you had breast cancer. L: Wow. Thank you. Because it's still a surprising story to me now, seven plus years later! I had gone for a mammogram like everyone else and I was called back, which wasn't surprising. I knew I had dense breasts. My sisters get called back. So they did a call back and they said, Oh, it's perfect. Everything's fine. And I got my piece of paper saying normal mammogram results. But then I had this experience that I, I don't know quite how to explain. Every day I'd go in the shower and this voice would come to me and say, “you have breast cancer… but on the right hand side” and it would, I would listen to it for the 15 minutes I was in the shower. I’d forget about it. And the next day would happen again. And then all of a sudden, five, six, seven days, I'm like, my goodness, the same thing is happening over and over again. I think you might need to listen! And having a scientific background, like you said, I had been an engineer originally. I was looking for others to validate it. So I showed anyone who was willing to look at my breast. “Do you see anything? Is there any reason I should have breast cancer?” And everyone would look, I seemed like I, I was kind of crazy, like, no, there's nothing wrong. But I couldn't get the thought out of my head. It was so strong, the feeling, that I finally went to emergency, urgent care. And I don't know why I chose urgent care. I was just like, here I come. I got my courage up and I said, I have a normal mammogram. They called me back on my left hand side, but I think I have it on the right hand side. And the woman listened, the doctor listened and called me in for some extra testing, in which they did an ultrasound, they finally looked like they could see some cancer, but it was early stage, they said. So I left all happy, well, not happy, maybe relieved, right? Okay, thank goodness it's not metastatic. And then when I went to see a surgeon for my mastectomy, he said, “Oh, you're kind of swollen. Your lymph nodes don't seem good.” And then they did a breast MRI and some bone biopsies and found out I indeed was metastatic. K: So why did they do the bone biopsies? Were you having pain already in your bones? L: I was... so when they did the ultrasound, the funny thing is I'm like, “Oh, please brace my body.” I did have back pain. It had been the first time in my life ever. So I don't really know what that experience is like, but I wanted them to bolster my body. But you ask why did they do a bone biopsy--it’s because sometimes you have a different type of cancer in your body and they wanted to validate that. Yes, I have breast cancer and it’s what is in my bones. Because they saw it. K: Oh, okay. It lit up on the MRI. L: Well, my chest lit up, so they knew it was other places, like in the ribs…. Oh, and then they did a PET scan, and they saw it was through the rest of the spinal system, but they needed to validate what they see on the PET scan and the MRI was indeed breast cancer, and so they strongly suspected it had traveled already when they did that bone biopsy. K: Okay. And then your, your journey took you to a few different oncologists just based on the fact that you had lobular—you were doing a lot of your own research and you were looking for a better and a better second and third opinion and eventually you found it. What was that like when you found your, your better oncologist that gave you the treatment that you're now working with? L: Do you know there was such a sense of stress that I could feel in my body that I was constantly trying to put myself in some ways in medical school. I was trying to do online research and try to understand because I was aware that these well educated doctors, well meaning oncologists, didn't have the information they needed and I was concerned that I was not being cradled as much as I needed to be. I think they were doing everything they could and I think they were wonderful people. So I don't mean that as an insult against them, but they just don't know enough about lobular. And, the second oncologist, I mentioned to her, maybe I want to see this doctor up in Seattle who's a specialist. And she actually was wise enough to realize she didn't know enough. And she contacted the specialist up in Seattle and talked to her. And they talked about my case, and I went up to see her too. And the sense of needing to research every morning, these two hours of, “what do I need to know about breast cancer?” Poof. That that stress is gone. It feels really good to be in the hands of someone who knows. And also, there's a lot less fear because I had developed what is called the ESR1 mutation which tends to sound super scary and people say you have to be on this one drug and only this one drug, but you can't take another, it can't work in conjunction with another drug and it's overall survival is relatively small…. So I'm like, it doesn't sound so good. And this doctor that I'm seeing in Seattle had so much knowledge. She's like, “do you know what? I think we have other drug choices that will work for you. And I've seen this enough that even this ESR one mutation may revert back. Let's not get crazy about this.” And so there was a sense that she had from treating patients, from working in research that really, allowed me to feel a lot more peaceful. K: How many years? Through your experience, did it take to find this, this new oncologist that you're working with now? L: So I had spied her through some online conferences and I realized, Oh, that's a doable distance because Seattle from where we are here is maybe three and a half hours. I mean, not ideal, but it was, it was doable. It wasn't like getting in on an airplane and having to get there. But it wasn't until I had an oncologist who admitted she didn't know enough to really help me that I started the search. But getting in with this doctor was a long waiting process. Well, five, six months. K: Oh, wow. Okay. L: You know how every month you feel so vulnerable. You're like, Oh, what if I don't get my treatment. But I think also this doctor realizes lobular tends to move very slowly. And she had looked over my paperwork enough and seen it. And also I think she's that kind of a busy woman that I was really thankful to be able to get into with her on any basis. K: And now you see her or her assistant monthly every other time, right? L: I see, um, every, I can see them as often as I need is the truthful answer, but we've chosen every two months cycle. So two months for the physician assistant, then the next two months with her, et cetera. K: Okay, so you've got a lot of access to her. How many years between your first oncologist and this oncologist that you've settled on? L: My first oncologist which in itself was a gift—my brothers were both, my brother in laws were both in the medical field and they realized I was over my head. And they both, one works with medical equipment, in particular PET scans, and he knew where to put out his feelers. And the other one was very knowledgeable as well. I think they knew I was faltering. And they found my very first oncologist for me. They had contacted all their friends so my first oncologist was a fantastic match, really knowledgeable. But when he left to practice in another country, I needed to find another. And that lasted, that relationship was oh, I guess five years. It was a beautiful five years. And then my next oncologist was very new and loving and willing to admit when she didn't know enough, I needed more. And that lasted maybe eight months. K: So you don't, it doesn't sound like you regret the first line of treatment that you underwent? L: No. I was actually on a study drug then that is now very typical for women with metastatic lobular breast cancer K: Which one? Was it a CDK4 6 inhibitor? L: Yeah, I had Ribocyclib... or quisquali—it’s called either name. And then my hormone blocker was an aromatase inhibitor called Letrozole. K: So it was the CDK4/6 that they were testing at that time because Letrozole was already on the market probably. L: Yes, exactly, it was like, it was, I think it was the Mona Lisa study. K: Yeah. Were you super excited to get into that study? L: I was super excited. But the realization of, gosh, this is such a fragile ground we're working on. Cause I remember there was a bunch of women in the study and suddenly there was just me. You only stayed on till progression. It made me realize how incredibly lucky I've been and how very indolent, personally, my cancer is. Mine is so slow growing. Certainly intelligent, but not as intelligent as others. So in other words, it doesn't mutate. K: Were the others on, did the others have lobular breast cancer as well or did they have ductal also? L: By in large it was ductal. I was never let know how many people had lobular, and other people stopped it because people have problems with joint pain. There's a lot of joint pain issues, but, um, fortunately, that wasn't really a big problem for me. K: And you mentioned “until progression.” So have you had an incidence of significant progression in your story? L: Yeah, so, the thing about scans is they do a pretty good job, with glucose avid cancers in your bones. Um, but not all lobular is very glucose avid. So what you see on PET scans are the really hungry cancer cells who are consuming lots of sugar, but the ones that are a little bit more laid back and not eating sugar, they don't show up on the PET scans. so what ended up happening is I was getting back PET scans that said basically stable, but all I could tell you is I couldn't bend through my pelvis. And I think I felt like my breast was feeling different. It's, you know, it isn't something I can really tell you it was this problem and that problem. It was again, this, This internal feeling and um, she released me one from one appointment thinking I know big deal in the second appointment like nope It's just not right and I spoke up again at which point she did some blood work and they saw They did sorry a breast biopsy where they found the ESR1 mutation. K: And that was an incidence of progression then. L: Yes, I, when I then transferred care up to Seattle, I was given an FES scan and they did see that there was a lot more cancer in my pelvis beyond the glucose avid. K: Right. The regular PET scan. L: And I kept having this feeling like “I'm the Tin Man. Why can't I bend?” It was, you know, it wasn't, it wasn't quite painful at that point. But yeah, I felt like I was a Tin Man and always having exercised and move my body. I just, it wasn't right and I knew it. K: So it sounds like you didn't have an FES PET scan until you went up to Seattle just a couple of years ago. Okay. Okay. Now I want you to tell the story of what happened when you went up to Seattle because it sounds like you got a very new insight on your disease and understood what you needed a little bit differently. L: Oh my goodness. Yeah—between oncologist number two, the lovely woman who said “this is more than I know about.” She had a replacement show up. So I saw the replacement oncologist locally one time before going up to Seattle. that doctor said, emphatically, you must be on this med. And then we said, well, what if we don't just, oh, you're going to die. So I was really, um, rather convinced that I only had one choice. And when I went up to Seattle, she, uh, my oncologist there is such a calm human being she's like, no, I think we got a bunch of different choices here. Um, so she had me do some genetic testing and which I found out I carry a BRCA II mutation mosaic. Not germline, so I didn't inherit it, and it's not because it developed through cancer. It's something that developed when the zygote, when I was forming in my mommy. So it's a weird mutation which opened a whole—since she did the testing—that opens up a whole bunch of different drugs I can take in the future, some PARP inhibitors. Um, but really what she gave me After she did the FES scan, she goes, you know what, I think you're doing really well, you are I think I can, I think I can give you quite a few more years, but we never know, and I don't think you need to, you know, the, the development of this ESR1 mutation was like, um, was so horrifying and shocking. I thought it was an end point, but it really wasn't. And she was very calm about it. So I really, really appreciate that woman. I actually call her La Papess, Popess. Yes. K: All right. So did you change your line of treatment when you went up to see Dr. Linden? Okay, L: Yeah, so Dr. Linden said, um, good news. We're going to still keep you on a CDK4 inhibitor, a different one, which made me very happy. And we chose to do Fulvestrin, which is the butt injections, which aren't, in fairness, they aren't the most enjoyable thing. And the monthly, You know, you have to go and get them monthly. So unlike the pills, the pills I could do three months without seeing an oncologist, three to four months, which I really appreciated that. So yes, I'm up there every month, but they're working well for me. And I think as cancer goes on, I just become appreciative. I think I controlled life more. “Why can't I get these drugs for six months?” I don't want to look at anyone for six months. And then you go, okay, you go once a month. And now I make it kind of a fun date. Sometimes I go by myself, sometimes I go with my husband, but I take nice walks and I enjoy Seattle. I pretend I'm traveling. So yes. K: And did you stop taking the CDK4 6 inhibitor or the letrosol in the meantime? L: So before she put me on a Palbocyclib, which is another CDK 4/6 Inhibitor, and Fulvestrant, yeah, she did stop for a period of time. And she said to me, “Breathe, relax, you'll be fine. It's a slow enough growing cancer. Nothing disastrous is going to happen in these few months, you'll be just fine.” K: Okay. And did your bending at the waist issue go away then after? . L: Well, I have new issues. Um, which may be collateral damage due to cancer treatment. But also I have, I have these cysts, these tarlov cysts that are pushing on my sacral nerves. So I have inflammation going on in my S1, S2 nerves. So movement through the pelvis is generally hard, but I do believe it is not related to cancer. K: What is your daily energy level with the drugs that you're taking now? L: Do you know, I don't feel that I'm really fatigued from cancer. What I do feel is because I guess to be more exact about how I feel, I feel like I have this perpetual sciatica feeling. So standing and walking are not pleasant. So if I sit all day long, I'm very happy. If I do a lot of bodily, you know, weight bearing exercise, I don't, body aches and says, please don't do this to me. Um, so sometimes I'll take something for the nerve pain in those cases, but I'm also learning like different ways of getting my exercise in. So instead of doing a standard upright class. I can tell you chair aerobics can get your heart rate up. K: Good for you. L: Well, right. Or incumbant bicycle. My pelvis is like that. I don't put any weight in my legs and I can get my heart rate up. So it's a learning process on my end, but I wouldn't probably go to a Zumba class for sure. No. K: Yeah. I'm so glad that you're able to describe what it's like, um, because I encounter you to be an uninhibited. Co advocate. Like when I met you in person, I didn't notice that you were terribly uncomfortable. You were able to be very energetic and animated. And it's just, it's interesting to me to think about, um, the way I used to see metastatic patients and the way I see metastatic patients now, there's very little difference in terms of your presentation and your ability to get out in the world, drive around, do things. You're very functional, and I think that's partly because, like you said, you had a very slow growing and probably somewhat indolent cancer, like sometimes it probably has completely stopped growing. Do you feel like that's the case? L: Yes, yeah, yeah. I had a few years of scans where there was nothing going on. Exactly. K: Okay. And how anxious do you get when you get up to those scans nowadays, after all these years of living with the on again off again, do you ever have intense anxiety or is it a much easier journey? L: Do you know, I don't know that the PET scans caused me any anxiety. There's a sense of You're just gonna deal with whatever comes up You're gonna process and go through so I don't think that causes me anxiety. I think sometimes Um, I don't keep my balance well, and I let myself get, get swayed by other people. I, I'm more anxious when I don't have my center. know, you'll have other people say, Oh, they can't see this. They can't see this. I'm going to do this kind of biopsy, that kind of biopsy, and those kinds of things are very stressful for me. I think for another person, that knowledge may be beautiful, but this whole idea of what they don't see, and what's it doing to me, is something that I, as long as I say. Let's separate those two things. Living with uncertainty is just something you learn how to do, and you need to learn how to do better every year. I have to just say, yeah, it's uncertain. Yes, that's true. K: And when I met you close to a year ago, was that your first step into the advocacy space? L: Yes. I think I just had a really hard time with that one. Healing myself enough before I felt like I could take on others. I, you know, I don't know what other women go through, partially because, um, sometimes other people's stories are hard for me to listen to. I, until I'm strong enough, I can only take in little pieces at a time, I guess is what I was saying to you. um, it took me a good six years before I'm like, Oh, I have the strengths to do this. I'm grounded enough to do this. Maybe I could have done it sooner, but no, I think I needed that, I needed a lot of, uh, spiritual, I needed a lot of spiritual healing before, beforehand. I just couldn't do it otherwise. K: And what did that look like? The spiritual healing? L: Ugh, you know, I think I had to learn the purpose of pain, and I'm not just talking physical pain. I found everything people were saying in me was rubbing against me. You know, like you'd say, Oh, I'm sad because, you know, I'm not going to see my sons get married, maybe. And someone would say, Well, you don't know that. Or you'd say, Oh, you know, I don't feel comfortable knowing that I'm going to die sooner than I thought. Well, we're all going to die, would be the response. there were just a lot of responses. that were hard for me to process. But I realized there's just a whole lot of people who are in pain, they can't take on extra pain. There's a group of people who, when they look at you with pain, immediately think, oh, that's bad. You can't feel that way. Why do you keep doing that to yourself? Why do you keep adding pain to your life? You go, and I would then feel bad about myself for doing that. And then there's people who met well, but it didn't land right. You go, Oh, don't say that to me, but in the end, what I learned is I think pain for me has served a really valuable purpose in terms of showing me how much more empathy and I need in this world, how much more empathy is needed in general, um, myself with myself, with others. Um, and I appreciate the pain now. And I listened to, I say, “Leslie, it's okay. You feel sad about that.” And I'll repeat what I'm pained about because I find other people aren't always able to do that. it's me being able to say that this hurts. I didn't want it this way. That allows me to then get beyond the pain. And see things in a more beautiful light. But if I can't listen to my pain, I get stuck in it. Yeah, pain has served a purpose for growing empathy, understanding the world and seeing the beauty because you can't see beauty if everything's always sunny and rosy, at least that's how I feel about it. K: Yeah. And you're now a part of a metastatic support group where you can do that for others to now. Did that take a long time to find? L: No, you know, I was how you want to be an advocate. Is it, as you know, yeah, because there's different forms that actually even listened to a whole podcast on calling. I have a science background, but like, I don't feel very drawn to reading research articles. I can read them. I just, that isn't, My cup of tea, right? I just saw an email that came out from Lori from the LBCA said, anyone interested in doing this? I'm like, damn, yes, it just felt right when it came my way, I'm like, that's something I can do. I don't have to travel anywhere to do it. K: What was it? L: So it was the, the SHARE Cancer Group. The National SHARE Cancer Group was looking for women to support lobular cancer—women with metastatic breast cancer. And they just needed two facilitators and I just clicked yes without thinking a lot about it. I just knew my stomach said, yep, it feels right. And so that's what I've been doing. the group is new. So the training took a bit of time and then the group took a bit of time before we found a slot, but we've been in session since September. K: And are you, you're actually facilitating one of those groups? How has that been for you? L: Um, you know, at first I thought it would, I was wondering, would I feel pain? Listening to other people's stories. Was I scared of how it would rub against me? I know it feels like this is a group of women where we all know what we've been through and we can talk together about our experiences. A lot of the women are newly diagnosed and you realize that's a hugely vulnerable group. There's not a lot of people in there that have cancer, have had cancer for a long time. Or like, yep, um, it's meaningful. I think when I had to quit teaching, I realized how much I'd loved my job and how much purpose it gave me and how I felt like I was helping others and also having a good time myself. I really, really love teaching, um, and I'm really happy to have found something. that maybe is similar. It gives me this as a purpose. I say similar, I don't know yet because it's still, it's still in the infancy. K: Yeah. Are they mostly younger women, younger than you? L: No, but there are women with young children. Um, so I'd say 45 to 65, maybe 70 is the, is the range, but currently it's a very small group of women and they're really just hungry, um, For information, because like you were asking me in the beginning, what did you need? You need someone, an oncologist who you feel good about, who knows enough that you can kind of go, (exhale) K: Did you have a support group of your own prior to this new one that's going on through Share? L: All the questions I need to fess up to. I did, Kathleen, but I found, I tried two different groups, and I just found they were so not the match for me. Um, one group I found there was this overwhelming gloom and doom feeling, which was probably very fair, but it didn't feel right for me. And then this other group, there was this need to turn everything into the best thing in the world. And that was scary, I think you do learn from cancer, but I think the learning happens after you acknowledge the pain. And the group was more like, “don't say that. That's bad. That's painful. Turn on the happy face.” It was like, you just had to have an on switch to happiness. And that just didn't feel right. So I think honestly, that's what the facilitator felt was best for the group. I thought that was a genuine expression of what she believed. K: Yeah. I find that most of the support groups I've been to are a reflection of how much the facilitator can take. Like, it only goes as deep as the facilitator is able to let it go. So I'm so glad they have you because you are allowing that to go deep. Is it mostly de novo patients that you're working with in this group? L: Do you know, the answer would be no, but there's a surprising number of de novo patients. I'm shocked. So in this group of 10, both the facilitators, both me and my co-facilitator were both de novo and in the last group, we had two other women that were de novo. And I think that's just related to how hard imaging is to detect this disease. K: So true. I'm going to go through this a little more in my, in next week's episode and reflecting on some of the terms that you and I are talking about, but just for the sake of the brand new listener who doesn't know what de novo means, it just means you're coming into breast cancer for the first time with stage four uncurable metastatic disease. And most times, most people don't realize this, but most times de novo patients don't have to lose their breasts. Did you have to lose your breasts? L: No, I did not, though I think some people are thinking maybe that's the right thing to do now, but you know how the cycle of things, it's always a long cycle. No, when I first got diagnosed, they say no mastectomies for de novo. K: I think it is still true that that's the standard of care. Did that make you uncomfortable? Did that weird you out that you didn't have to lose your breasts even though there were cancer cells in there? L: Initially, no, just because I had so many things I was processing, it's like, I just didn't feel like I could take on another thing. The sense of being overwhelmed, um, was pretty large. But now I'm debating, oh, if I can, if I can manage a longer time with this disease and this helps. I would definitely debate it. K: Do you think there would be a little bit less anxiety somehow or what would, what would the result of, of doing that be? L: Good question, Kathleen. Yes, maybe a little less anxiety, but you know what? I also have to realize cancer will have cancer's way and I am personally not in a battle trying to outsmart it at every step. doing the best I can. It does what it's doing. And we're living together. I can't worry. I can't worry too much. I do, I make all the choices I can for myself. And some are right. Often they're right. And sometimes they're not. But this is just what, this is just the process. I mean, cancer is a, is a, is a, uh, It's an amazingly smart disease in some ways. know, when you hear about the mutations women develop, What they, the drug they use to block the cancer could then be used to feed the cancer. You go, Oh my goodness, it's smart. So I'm just trying to say, I'm giving myself slack because you can only do so much and worry about so much. And I think my health is best when I say you're doing what you can see your beauty, see your value, see the beauty in this world. And that's good enough. It's a lot. K: Yeah. Talk a little bit more about your relationship to beauty these days? L: Um, I think the simple aspect of some days are so hard to walk and then I take one of these magical pain pills, and I don't mean anything severely stronger I think, but just something that helps with the nerve pain and then I can walk again and like my body moves like this. Isn't it beautiful to walk? And I'm noticing that all of a sudden I can take—oh, those are lovely flowers. Oh, look at that house. Isn't that beautiful? Um, I think cancer just has slowed me down enough that instead of seeing what's ugly, because there's plenty of ugly things, to look at with cancer, I'm looking for what is beautiful, and I'm trying to create more beauty around me. be it as simple as decorating, or in words, in kindness to other people. Um, I just, I don't know, beauty really calls, is a healing force for me. It calls me. K: I didn't tell you I was going to ask this question so you can turn it down if it makes you uncomfortable. But I know you're a spiritual person, you're a person of faith, and I'm assuming your family shares some of that with you. Does that make it easier to talk about the end and what you would like to have set up for yourself? L: Kathleen, I wish that were true. You know, my boys are young and they're not young, young, but you know, they're struggling to find their own ways. And, I think what ends up happening as a family is we all learn together how to better support each other and embrace pain. So I think it's a spiritual journey that we're all put on, but I don't think it's made it easier. I know they would be sad and they'd say something like, um, like the ringing of the bell after radiation, they go, “do you want to ring the bell to celebrate your end of cancer?” And you're like, no, I don't. And it hurts. I would go home and talk to my one son about that. And he'd say, Oh, but you need to understand some people need to celebrate. Okay. And finally I had to say to him, “I have this understanding and want to celebrate. I just need my pain heard first.” And it's funny. It was maybe six months in which we were kind of at each other a little bit like that. But in the end, um, his ability to listen to pain, mine and others, and to ask the questions that people need to dare to ask to find out what's going on in someone's life—to just say whatever comes out is okay. You don't need to convince someone why you shouldn't feel pain, why this isn't right, another perspective. It just is. And to see him handle that so, um, gracefully at such a young age, well, a young adult age, I think is really beautiful. So I'm very thankful for that. K: Do you have a bucket list? L: A bucket list. Um, no, I don't. No, just, just filling, filling things up in my life with beauty. I think French. is maybe my bucket list. I can't explain my relationship to French. I study French because it brings me joy. There's an ability to communicate in another language that doesn't exist in English for me. And I do it, not that I'm good at it, not that I'll I may never get near fluency, but it just feels good. So I think my bucket list kind of consists of these things. Making sure I'm finding beauty while embracing pain and things that feel good. And friendship is one of those things. My family, laughing with friends, a good glass of wine. Those are all beautiful things. K: Yeah. How about an advocacy bucket list? Is there anything you really want to accomplish as an advocate? L: Yeah. So having never had had mammograms find my breast cancer. I think what I would really. to do is work on finding better screening for women and maybe taking some of the veil off the perfection of mammograms. I think mammograms are highly important and will continue to serve A very valuable purpose, but until enough women say because they have dense breast or because they have lobular breast cancer, that these tools aren't working for them, we don't have enough agents of change working on the status quo because, you know, we have a lot of money invested in mammograms and a lot of training, but we really do need, um, better screening. K: Amen. Yeah. Yeah. I feel like that's what I hear over and over from other lobular advocates. It feels like a cruel trick, you know, that this thing that is so held up among other women and in the breast cancer community at large has really swindled us that it really deceived us. And, um, we're only a small percent, 15 percent of that population, but so we don't the loudest voice or shouldn't have maybe the biggest say, but it still feels really, really tricky. L: Yeah, and I don't think you have to say mammograms are bad because they're not. They're great if you have fatty breasts, they're great, well maybe very good if you have ductal cancer. So they serve a lot of purposes, but they're not serving us all, and that's a true statement. K: Yeah. How do you feel about the advent of FES PET? Are you a huge fan? Do you shout about it from the rooftops or? L: You know, I think FES PET is great in that it can show you your hormone receptor status , throughout all these parts in your body that can't get biopsied easily. Where lobular breast cancer still really needs a, a scanning device is in the, in the gastrointestinal area. An FES PET does not help in that. So it's, it's a helpful tool for its purpose, but we still need some more, more tools. K: Well, I hope you'll come with me to San Antonio and speak about that to the scientists that are interested in hearing from you. Especially you should have a pretty loud voice in that context. L: Thank you, Kathleen. K: Yeah. Is there anything else that you'd like to share with other patients, whether they have lobular or not? Um, just something that you would have liked to have known early on going into a, a de novo diagnosis. L: Um, no, I think we covered it. It's just a hard phase and be gentle with yourself. It's hard. And for me, it took years. K: Yeah. Would you encourage folks to just keep trying support groups like rapid fire? If the first and second one don't work out, would you say that that's something you would do differently? L: You know, no, I, I had to spend a lot of time understanding why certain things hurt me I felt breast cancer was a graded report card. You know how like she beat breast cancer or cancer could have kicked her in the butt, but she was resilient. You see this kind of messaging, which for someone who is going to die of breast cancer, I felt like I was failing in that report card. I wasn't strong enough. I wasn't meeting those things. And I never realized it was a report card until I had breast cancer. But so to answer your question I needed to spend six years to see my own value and my own merit. I had to separate from those messages. I think support groups could be great for another person. I just, I had a lot of weakness that I had to work on. A lot of “owies,” maybe not weakness. I had owies I had to work on until they were worked on. Support groups just hurt. K: Yeah. There's a lot of toxic language. In our community. And we need to work on that for sure. There's a lot of shame in our community that is unspoken. And when you go into a support group and that shame is unspoken, it almost reinforces the shame, right? L: Yes. K: I feel the same way. Yeah. My first support group was the same. It didn't go deep enough for me to feel like I was getting some healing. And. Yet for me, I didn't need to withdraw in order to work on that and get rid of the shame. I just needed to find a different group of humans that could admit that they had shame and that it was a lie. So that's interesting. We all get there somehow. We can either get there on our own or with others, but as long as we keep working on the shame and dismantling it, I think that's the main thing. L: Yeah. And thank you for bringing up the shame because yes, there is a whole lot of shame that takes a lot of effort to work past that or work with it. Yeah. K: Yeah. Well, thank you, Leslie. I'm so glad that you came and told your story and let these things be known about you. It is, it is so refreshing for me. To hear more about your story, and I look forward to hearing more and more and hearing how it goes with future treatments. You, you're always a bright source of light and hope in our community. And I just feel like, like you said, that is, is rare in the metastatic realm. Sometimes you get doom and gloom, but you are not, you're anything but doom and gloom. L: Kathleen. I really appreciate it. Thank you for listening. I appreciate it very much. K: Yeah. I'll see you in a few days at our next meeting. L: Okay, bye.…
Today I'm just reflecting on how Breast Cancer Awareness month has gone for me personally this year. I hope it's been a good one for you! Email me a screenshot of your rating or review of my podcast to be entered in a fun giveaway! kathleenmoss@protonmail.com is the place to send it! 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/ 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.…
In this episode I got to interview a fellow youtube/breast cancer recovery coach and influencer, Marina Blackford! I'm so honored that Marina has been willing to spend this time with me. We talk about her story of lumpectomy AFTER mastectomy, her desire to run the NYC Marathon, and her insights into the spiritual side of healing from this disease. I'm so excited to share this interview, both here and on the official podcast youtube channel, @abreastcancerdiary - Links: Marina's fundraising page for YSC and the NYC Marathon: https://give.youngsurvival.org/marina Marina's web site: https://marinablackford.com/ (No Transcript)…
Watch on YouTube: https://youtu.be/agbu6QjDiXs Support my work by making a donation here: https://liberapay.com/abreastcancerdiary/ Links from today's episode: Meryl's Instagram Accounts: @merymeryl; @thestoryofcaptaincharlotte; and @rompandrollick Meryl's business email address for parent coaching: meryl@rompandrollick.com This episode doesn't have a transcript.…
In earlier episodes with stories like Marquita's we've seen ways that Triple Negative Breast Cancer can be "not so bad" but in younger patients it's often the reverse. Meryl Opsal is my guest today, and she's got a harder story to tell about the effects of her immunotherapy. Meryl is a powerful woman, and if there ever was a cancer fighter she is my image of one. She and her family have been through so much, and they are still going through it, but they are managing well together. Stay tuned for a follow up episode in which we will talk more about the new immunotherapy drug called Keytruda that's showing a lot of promise for triple negative patients. Watch on YouTube: https://youtu.be/agbu6QjDiXs Support my work by making a donation here: https://liberapay.com/abreastcancerdiary/ Links from today's episode: Meryl's Instagram Accounts: @merymeryl; @thestoryofcaptaincharlotte; and @rompandrollick Meryl's business email address for parent coaching: meryl@rompandrollick.com Meryl's website: https://www.rompandrollick.com/ Transcript: Kathleen: Today's guest is Meryl Opsal. She's a mom of four and eight year old kids, an education consultant in early childhood education and a podcaster that I listen to every week as a bedtime story. Her podcast is a delightful children's adventure story that just started around the same time that my podcast started called The Story of Captain Charlotte, and I highly recommend it, whether you're an adult or a kid! Her story grabbed me on Instagram recently, and she's my first guest that is really. pretty much a stranger to me. I haven't gotten to know her very much. I trust her because she is an amazing storyteller and a very vulnerable person with regard to her cancer journey. And she has an important story to tell. I asked her on to talk about her experience as a triple negative survivor. She has endured triple negative breast cancer, ductal breast cancer and was diagnosed with stage 3C, which means that she had extensive lymph node involvement and she's been through the ringer with her treatment. And that's the main story that she has to share today. So Meryl, welcome. I wanted to ask you about your experience with the drug Keytruda, which is a new immunotherapy drug that has really been full of promise and hope for oncologists across the world. You have a little bit different story to tell about it and I wanted to allow you to do that here. So please tell us a little bit about your diagnosis and your treatment and, and how that went for you. Meryl: Okay. I can definitely do that. And first I just want to say thank you so much for having me. I really appreciate it. I'm on a mission of education, advocacy, and demystification of breast cancer. And so I just really appreciate the platform to spread the word a little bit more. So really my diagnosis starts with my sister's diagnosis because my sister was diagnosed with triple negative breast cancer in February of 2023, which was a huge shock to my family because we really had no history that we knew of, of any kind of breast or gynecological cancers. And I went to visit her and help support her through some of her treatment. She's on the East Coast. She said, Meryl, you really have to get a mammogram. And I said, “don't worry. I just turned 40. I am going to see my doctor next week. I'm definitely going to get a mammogram. It's happening.” I went to see my doctor and she did a full exam. I even remember that while she was feeling my left axilla, she was manually, you know, feeling, making sure everything was okay, and I was talking to her and I said, my sister was just diagnosed with breast cancer. She said, “oh my gosh, I'm so sorry. Definitely going to get you in for that mammogram.” I only mentioned that because she didn't feel anything and I wanted to just point that out because of how quick some cancers can progress. Some breast cancers, some breast cancers can be very slow and you have time and mine was not like that. Mine was not like that at all. It was like a bomb went off in my body because I had this mammogram and the mammagram was two weeks later, and there was already cancer in my left axilla, as well as in my breast, and I got a letter a couple days after my mammogram saying that I had dense breasts. Now, I know that there's a new law that's around the whole country that you'll be notified if you have dead breasts. In California, that law already existed at the time, and it said, “please call us for a follow up ultrasound.” So I called the ultrasound place, and I said, I'd like to make an appointment. I got this letter, and they said the next available appointment is six weeks from now. And I said, oh, I was really nervous because of my sister, and I said, “I know it just says dense breasts, but I really, is there anything you can do?” And the woman on the phone said, “don't worry, if it needs to be stat, your doctor has the mammogram report, she'll call us and it'll be stat if it needs to be stat” and she said, “but just make sure that your doctor sends the ultrasound order because we haven't gotten it yet.” So, I kind of forgot about it. I was very busy recording for The Story of Captain Charlotte and running my business and I kind of, you know, moved on with my life. And I mean, I did notice that my left breast was starting to get bigger than my right. I googled it, you know, it could be hormonal, whatever. I kind of wrote it off. I kept reassuring myself saying the doctor has the mammogram report—she would tell me if it needed to be stat and I just sort of wrote it off and just said it's in my head “There's no way. I also have breast cancer right now. That would be crazy.” So it comes to two days before my ultrasound I call and they say “oh no, we haven't gotten the report yet.” “Oh, that's surprising.” I called my doctor and they said, “Oh yeah, we'll send it right away.” So I go in for the ultrasound, and the most peculiar thing happened—they only took images of my armpit. It was really confusing, seeing as how I had dense breasts. And, uh, I've had two babies. I know what it looks like when they're measuring things on the ultrasound, you know, the tech can't say anything, but I'm seeing black spots, I'm seeing her measure them, so I just get this pit in my stomach. And on the way home I got a call and she said, come back, the ultra, the uh, radiologist wants images of your breast as well. And that's when I went and got my husband because I knew it was about to go down, went back, and got the ultrasound. quickly after that, got the biopsies and the staging and all of that. All of that moved quickly, but I actually really have no evidence that my doctor ever looked at the mammogram report. I don't know that she ever looked at it. It's really, really upsetting. I cannot, unfortunately, sue her for malpractice because the cancer at the point of the mammogram was already multifocal, meaning it was already stage 2, and so my treatment options wouldn't have changed. K: Wow. M: It's just this really unfortunate thing. I probably would have been staged. 2A, 2B, and instead I ended up being staged at 3C, which the law says, oh, well, your treatment options were the same, so there's no case. But just the lived experience of being staged 3C was so terrifying and so scary and I just really lost trust in medical providers at that point. And I think that's a good thing. Actually, I think people should have a very healthy skepticism that their providers are going to do anything for them that you expect them to do, even the bare minimum. And I think most people who have been through breast cancer have come to understand that—that we really need to be our own advocates. If there's a test, you need to make sure you get the results yourself. You look at the report yourself. You know, if a prescription needs to get called in. It's, you know, it might not happen. You need to follow up. You need to follow up always yourself. So that was the first time I really learned that lesson. Um, let me just have a sip of water—I need to constantly drink water in order to talk. So the gold standard of treatment for triple negative breast cancer is called Keynote 522, it includes 12, uh, 12 doses of carbotaxol and then four of adreomycin and taxotere, which is also known as the red devil. And then through all of that—that's about six months. And then continuing for six months after that, every three weeks, you're supposed to get an infusion of Keytruda, which is a very new drug. It's an immunotherapy drug. And so I started chemotherapy in July. I was able to continue running my business. I ran a very popular and successful parent and me business. So I taught classes to babies. Um, they came with their parents and toddlers came with their parents and it was my dream come true and it was beautiful and amazing and I loved every moment of it. It was very, very physical, very physically taxing. I was able to do it through the carbo taxol portion of the chemotherapy but then when it came to the red devil, the Adreomycin, I had to stop. So around November of 2023, I noticed, (I noticed!) I was getting extreme like 10 out of 10 pain in my parroted salivary glands every time I ate. And. When I say 10 out of 10, I do not say that lightly. I, I gave birth to my second child completely naturally, and this was beyond. Quite a bit beyond. The amount of pain—I was blacking out. I was going into cold sweats. It was really, really, really painful. So I brought it to my oncologist. “What's going on with my salivary glands? Every time I eat, this is so weird.” And anyone who's been through chemo knows the line. It's chemo. It's chemo. Everything is chemo. Everything is chemo. Oh, it's chemo. It's chemo. It's chemo. I've always shared my breast cancer story on my Instagram and I get a lot of really impressive helpful feedback from my followers and one of my followers has an autoimmune disorder called Sjogren's and she said it sounds like you might have Sjogren's. I had never heard of that before and so I asked my oncologist I said one of my friends said that it might be Sjogren's and she literally said to me “I don't know why we're talking about Sjogren's right now!” and we just moved on and she just swept it under the rug and then I finished my chemotherapy. December 26th was my last one and I had one infusion that was just Keytruda. And when you get just Keytruda, you don't get any of the premeds that you get with the chemotherapy including a steroid. Usually when you get chemotherapy you have a steroid as a pre-med I didn't know at the time that that steroid pre-med was protecting me from the Keytruda in a lot of ways even though it was still hurting me. When I had this one infusion, I think it was like January 16th—it’s funny how we remember all these dates because they're all so important. Honestly like getting hit by a truck. Related to Sjogren's, um, in my body just went completely off the rails. I, within a day, stopped making tears, stopped making snot, stopped making saliva. There's a mucus membrane lining up your, your Your bladder that protects you from your, the, um, the acid, the acidic nature of your urine from burning your bladder, that went away. And so, all of these things happened to me, and then a week later, I had my double mastectomy. So I was very, I did not know what was happening to my body, and then I had the surgery. I was recovering from the surgery at my parents house and my parents are both in the medical field. And so we had a lot of time to talk about what was happening to me, not just with my double mastectomy—they took great care of me for that, but also all these symptoms, like I wasn't able to eat all these foods, I couldn't breathe. You need, anyone who's taken biology knows, you need a wet mucous membrane to breathe. I was having trouble breathing. There were multiple nights where I thought, “I don't know if I'm going to wake up because I can't breathe through my nose and I cannot breathe through my mouth because my mouth is so dry” and my dad did some research and he was the one that pulled up a case report saying that there's evidence of people getting Sjogren's from a similar drug to Keytruda, another immunotherapy drug. And so, we printed out, we found more case reports, we printed it all out, and brought it to my oncologist. I brought my mom with me, and we, we brought it to my oncologist and I said, This is what's happening to me. This is what's happening. And she went, “Huh, how about that? Immunotherapy does the weirdest things.” So that was the second time I learned that you really cannot trust your providers to do even the most basic things. Even the drugs that they prescribe that they're supposed to be experts on, they may not know about. And it's not advisable to Google a lot of things around breast cancer, but there are some things where you really do have to—you have to Google, you have to be informed. And I really wish that I had when my, like in November when the symptoms first happened in my parotid salivary glands, that I had really started googling that and pushed her a little harder to send me to a rheumatologist. So luckily now I'm under the care of quite a few doctors. I have a special eye doctor, I have a few rheumatologists, and I'm on a whole bunch of drugs. But unfortunately it seems like a lot of the symptoms are permanent. So what happened to me is called an immune related adverse event and when you're talking about immune related adverse events, uh, permanent is described as symptoms that last over a year. So, my symptoms are going to be permanent in that respect, but also probably permanent in a more colloquial respect, like probably forever. It is possible that my body will heal, but it's such a new drug, and there's really no reports of this resolving. Very, very few people have gotten Sjogren's from Keytruda. I actually have never met anybody that's gotten Sjogren's from Keytruda. It's just these case reports that I've read. It's much more common for people to have issues with their thyroid, their kidney, their pituitary, um, other types of autoimmune issues. So, I really don't know what the future holds in that respect. Yeah, so that's, that's pretty much how I was diagnosed and kind of what was going on with the Keytruda. K: Did your Sjogren’s affect the way that you healed from your mastectomy? M: Yeah, oh yeah, I mean, ever since the first symptoms of the Sjogren's, I have not been allowed to have just breast cancer. I have breast cancer and a serious autoimmune disorder. And especially at that time when I didn't know what was happening to me, I didn't know how to eat. I've had to completely relearn how to eat because, not like literally how to eat, but the things that I can put into my body and successfully chew and swallow. Because I have such a small amount of saliva. All my favorite foods, all the things I was used to eating, uh, my ability to casually snack, you know, all of these things completely went out the window. And after surgery, it's very important to nourish yourself with healthy foods, to eat, to make sure you're eating enough in the day, even if you're not feeling good and that was a struggle. That was a real struggle because I also wasn't able to cook for myself. I was at my parents house. We already eat very different diets because my parents eat meat. I don't eat meat. And they're kind of like, “I don't know what to do. What do we cook for you?” already and then there was this also surprise thing, which is like all these things they were trying to make for me. And then I literally couldn't eat it. It was so frustrating. And the bladder pain was really off the charts because I did not know what was going on with me at all. And it was to the point where I was having trouble walking. That's how much it hurt. And really, I should have really just been focused on the intense pain and discomfort that I was going through from my double mastectomy, which was almost a side note to this mystery thing that was happening to my body. So, yeah, I mean, absolutely. Absolutely. K: Your actual wounds, um, and incisions did heal pretty well though. They didn't have trouble healing? M: Well, I actually did have some trouble healing because the treatment for this type of immune related adverse event is prednisone which can delay wound healing. And so when I went to see my oncologist with those case reports saying this is what's going on with me and what I need is what it says in there is prednisone, so you have to write prednisone a prescription for prednisone for me. And she said, okay. My plastic surgeon found out and he said, you have to go off the prednisone immediately. And it had already at that point caused some wound healing and I needed a couple extra stitches in one spot. It, it, yeah, it caused a little bit of a delay, but everything eventually did heal up fine. K: Did you get, um, implants or did you get a flat closure after a mastectomy? M: So I currently have tissue expanders. And, um, planning on having them exchanged for implants in January. K: And how's that gone? Has your body responded okay to the expanders? M: Yeah. Yeah, I would say so. I mean, expanders are notorious for being uncomfortable, and I can confirm that that is true. They are uncomfortable. However, most of my breasts are numb. So, the discomfort is probably mitigated by that a little bit, because I can't feel a lot in that area of my body. Um, but yeah, overall it's been, it's been okay. It's been okay. I am very much looking forward to the exchange surgery though because I've heard the implants are a lot softer and they'll be more comfortable. So I'm, I'm really looking forward to that. K: And when is that? Is that pretty soon? M: That's in January. So, um, after I finished chemotherapy and my surgery, I had 29 rounds of radiation and there's some sort of complicated math problem about how quickly the radiation leaves your body and they figure out exactly when you're able to have surgery and it's usually around nine months after radiation you can have surgery. So that's why I have to wait until January for that exchange surgery. K: And how was the experience of radiation for you? M: Um, radiation was hard. Radiation is kind of, kind of a mindfuck because unlike chemotherapy where it's very concrete, there's a medicine, you're seeing it go into your vein, you feel it. Radiation. It's like, it's invisible, you know, it's invisible, but in your mind, you're like, it's radiation . Like, know, you think of Hiroshima or something like it's, it freaks you out. And then there's also the aspect of it where you're on a table, exposed, alone, in a room. And something I did not know about radiation, that I know now, is that they need you to be in the exact same position every single time because of, they have it like all mapped out on computers and they need it all lined up perfectly. It's all very, very precise. Which is good, because we don't want our heart or our lungs radiated. But one of the ways in which they keep you in the same place is they lock, or at least I should say for me, because I know different places do it different ways, but for me, they created this mold of my mouth and my neck, and very, very tight to my mouth and my neck. And then that's clipped, locked onto the table. So it's literally this like mesh, hard plastic mask that locks your head onto the table. So you're exposed, alone, locked to the table, unable to move. It's extremely vulnerable. It's extremely vulnerable and you have to do it every single day. So it's just this unrelenting schedule. Your entire life is overtaken by this schedule of radiation. And for me, I didn't really see anything happening for a while. And then when it got to the last 10 days, I would say of radiation, the skin in my armpit started to give up, say, see ya, all fell off. I had third degree burns in my armpit and it was really painful. The armpit is a hard place to have burns because it's really, really difficult to bandage, really, really difficult to keep it still. So that was very, very painful. And then when I was there, I would, I would keep my arm down all the time. But then when I was there, I had to lift it up and stretch the skin and it was so painful. And then to know that I was getting more, it was really hard. It was really, really hard to get through. Um, but I got through it and I got to ring the bell and that felt so good. That was the end of my active treatment. It was such a relief to be done. K: How long was your, the span of your treatment? When did it start and when did it end? M: I had my first chemotherapy at the end of July in 2023. And then I had my last radiation in Early May. So, that's how long it was. K: Thank you for describing that. I think for me in some of the procedures that I went through, especially the different biopsies, just knowing what to expect was the main thing. I don't care how gruesome it is. I just want to know what they're going to do to me and what it's going to feel like. So I really appreciate you reliving that for the sake of the listener that is brand new and hasn't gone through that yet. I know it's hard to hear, but it's better than not knowing in my, in my way of thinking. So thank you for that. I want to talk to you a little bit about your medical system. I know your parents are both medical practitioners and probably advised you about the best place to go in the first place and whether or not to change, get second opinions, get a different provider. Did you switch providers ever, or did you feel like you were already in the best spot to begin with? M: So, when I was getting diagnosed, I was on the phone with my sister, who was in bed recovering from chemotherapy, and we had a spreadsheet. And we had a plan. If I was diagnosed, which it was looking very likely that I would be, I would have the numbers of who to call right there, ready to go. And my parents actually didn't advise me in this area, because they're actually, they're actually not practitioners in, in my area. My mom is retired. She used to work in clinical auditing at Johnson and Johnson. So she knows a lot about medications and how they work in the body. And my dad used to be a pediatrician and now he works for an insurance company doing imaging requests. So he knows a lot about imaging, which is good. So those have all, those have come in handy. They've come in handy, but they don't, we're not actually from this area. So we, we don't know the, the medical system here all that well. So my sister did a lot of research for me and we identified two of the top oncologists in the area and I met with both of them. One of them was out of UCLA. I'm in Los Angeles. So one of them was out of UCLA and the other one was out of City of Hope. In, it's actually pronounced Doherty, but I'll say Duarte because I really don't like saying Doherty and that's their main campus, which I'm very lucky that I live about 15 minutes away from the main campus of City of Hope. K: Oh, wow. Yeah. M: So with both of those providers and I eventually decided to go with City of Hope. And the reason for that is because it's kind of a one stop shop. I'm really glad that I actually made that decision because I've heard from other friends who, maybe don't live in a metropolitan area. They have an oncologist, they have to go find a plastic surgeon. For me with city of hope, they know how to do breast cancer. You get on the ride and you just go, I didn't have to make any appointments for myself. I didn't have to think, when should I schedule an appointment with my plastic surgeon? It literally just popped up. They just make the appointments for you. They know exactly the timing, how to do it. And you just have to kind of give yourself over to it. Of course, always making sure things happen. You know, we learned that lesson, right? We have to make sure things are happening, but it's to a large extent, city of hope takes care of it. And the other thing I really liked about City of Hope is that they have their own, um, ED emergency department. And so you don't have to go to just your local hospital and then explain to them, I have cancer. I'm going through chemotherapy, blah, blah, blah. And they don't know what to do with you. At City of Hope I did have to do this twice. I was admitted twice during, during chemotherapy. I was admitted to the ED twice. Um, and that was really, really great to be able to go, they have your whole history, they can contact all the doctors very easily, and they obviously know exactly what to do in the case of neutropenic fever, which was one of the reasons why I was admitted, and the other time was from bacterial pneumonia. Um, so they know just how to treat patients who are, who have a compromised immune system and have these types of problems. So I was really happy. I never, I never switched any of my doctors. I was really, really happy with all of them. I mean, I've been very lucky. I think it's a very different situation for people like I said, who don't live in metropolitan areas. Like my sister, my sister lives in Western Massachusetts and she had to drive three hours every single week for chemotherapy to go to Dana Farber in Boston because she just didn't have any good options near her. She wanted the best, you know, she wanted the best treatment obviously. And so she was just driving all the time, all the time, three hours back and forth, both ways, three hours, one way, three hours, the other way to get chemotherapy. I feel very, very lucky that I live so close to such a, a good cancer center. K: Yeah, that's amazing. And City of Hope is exclusively cancer. It's a cancer center only, right? M: Yeah, that's right. K: Okay. So how did you deal with the shoguns then? Did you have to go outside of City of Hope to get help with that? M: Yeah. And that is one of my sticking, kind of problems or sticking points that I spoke with my oncologist about recently. City of Hope does not have a good, I would say, rheumatology department. And I really feel any quote unquote comprehensive cancer center that is giving immunotherapy should have a rheumatology department/group on site, right? Because a lot of people have immune related adverse events and they need a rheumatologist that is familiar with both oncology and rheumatology. so I was sent to UCLA. They have a really good rheumatology department and so my quote unquote local rheumatologist is out of UCLA. My special eye doctor is out of UCLA So they can all talk to each other. Now I have a neurologist. Um, and so they're, they're, they're all in the same system and they can collaborate really easily. But that actually wasn't good enough for me because my local rheumatologist had never met anybody who's had an immune related adverse event from immunotherapy and she really did not know what to do with me and she was treating me more like a primary Sjogren's patient which most people who get autoimmune disorders It comes on very slowly over years and then they start to notice something's off and then they'll maybe go see their rheumatologist a couple years in to having their first whispers of a symptom but for me, that's not what happened. And So she, she was treating it like I was having a Sjogren's flare, and that's just not exactly what was happening to my body. And so, I became aware, through the Sjogren's expert at UCLA, I became aware of a doctor, Dr. Katsumoto, out of Stanford and Stanford has an interdisciplinary group that is oncology-rheumatology. It's one of the only ones in the country, and I was able to make a telehealth appointment with Dr. Katsumoto. I had to wait, I think, four months for the appointment. But when I did eventually get to see her, she was the one that finally was able to help me because this is what she does all day. She either helps with patients who have autoimmune disorders and are diagnosed with cancer or people like me who acquire autoimmune disorders from their cancer treatment. So she knew exactly what to do to help me, and I feel very, very lucky that I was able to be treated by her. K: Yeah. Do you do online appointments mainly then? M: Yeahm she’s at Stanford, so that's, um, that's upstate. It's like near to San Francisco, I believe. So, yeah, we do telehealth appointments only. K: Have you ever met her in person or is it always been telehealth? M: No, I've never met I've only had two telehealth appointments with her. Yeah, K: Oh, that's so great that you could access her that way so easily. M: Yes, very, very lucky. K: Well, before I want to ask you about your family and your kids, but before we move on to that, I want to ask, it sounds like you have stated already very clearly that your main regrets in your story have been that you didn't follow your intuition and start advocating for yourself a little sooner, both with your screening and with the Sjogren's incident, is there anything else that you want other brand new cancer patients to know about that you wish you had known? M: Um, well, I, when I was first diagnosed, I was really, really hoping that I would continue, be able to continue to work. Cause like I mentioned, my business was so important to me and I had many clients that were dependent on me and so I wish that I had stopped working sooner because what ended up happening is that I basically, um, worked myself into the hospital. I, like, I had mentioned that I, I was admitted with neutropenic fever and I really believe that was because I worked too much. I was trying to do too much. I was trying to keep up normal, you know, keep going, and it was not appropriate. And that's kind of been a theme in my life, where I sort of work myself into the ground or try to do too much. It's a lesson I've really had to learn, is to slow down when you need to. You can circle back when it's all over, but, you know, when you're, especially when you're going through chemotherapy, you really, really, really need to slow down. I did not take it as seriously as I should have. I mean, I knew I would be nauseous, I knew I would lose my hair, I knew all of that, but I didn't realize, I didn't realize how close to the edge it was gonna take me. Twice. That was a surprise to me. Um, so yeah, that would be definitely another thing to note is to slow down, to take the chemotherapy serious and you're not going to be able to continue your normal schedule that you need to kind of ask your family and friends for support to, to do even really honestly, the most basic things. K: Do you feel like that was informed by the stories of others or seeing others with cancer on Instagram? Or did you have any way of pacing yourself that you were kind of measuring against someone else? M: Um, no, not really. I mean, my sister was, my sister was going through chemotherapy. We had some overlap at the same time, but she lives very far away. I did, so I didn't really in my face get to see exactly what she was going through, but I did know that it was hard for her. But she tends to put on a brave face, so I don't think I ever really heard like exactly how hard it was for her. It's really just the pressure I've always put on myself just to do everything. All of it. So much. All the time. That's a big part of my personality is just to always be go, go, go, go, go, and always be doing five things. And, um, it takes, it took chemotherapy to get me to stop, you know, just stop, stop everything, you know. K: Yeah, I think that's a common personality trait for us. Breast cancer survivors. You hear that type A is, is very common among us. So certainly it was true of me. Yeah, M: So interesting. K: Did you have any support groups in your life during chemo or after? I was made aware of that resource while I was in chemotherapy. But I wasn't ready to join a support group until I was done with chemotherapy. I felt that I talked to my therapist. I had a therapist. Luckily, I was already in therapy with a trusted therapist. Um, I already had a psychiatrist and a psychologist. I already had the mental health team in place, which was really lucky. but I spoke to my therapist when I was in chemotherapy. She suggested I join a support group. And I told her I'm really not ready yet because I was having such a hard time. Being stage 3C and then the difficulties that I was having with chemotherapy, how it was really, like I mentioned, it was really, really, really hard for me. And I do feel that I came pretty close to honestly dying twice because of it. I felt if I'm in a support group with someone who's like, you know, not staged as high or isn't having as hard of a time or didn't need chemotherapy, that I would have really big feelings about that. and so I waited until I was through chemotherapy and the bitterness was a little bit more resolved. And then I joined a support group and I'm in a support group now, um, through that organization I mentioned and I, it's amazing. I really love it. It's really, really great to be able to hear other people's stories and, you know, You know, provide real time feedback, share, and find that some things that happen to me happen to you too, and I don't feel as alone. people ask questions, and you're able to, you know, provide some insight from things that we've been through, so it makes those experiences feel more valuable, because, oh, I can now tell you about it, and you don't have to feel so alone, or, It doesn't have to be a mystery to you anymore. so yeah, I've really enjoyed being in that support group. K: Do you feel like that's the main way that you deal with your trauma or your PTSD from all of this? M: Um, no, definitely not. Um, I have a therapist. She helps me a lot. I don't think I've really to really, really do any hard work on the PTSD from it because I still feel I'm so in the middle of it. I still ha this Sjogren's thing is still unfolding. I'm still in the middle of trying to treat it, figure it out, see what's, what's going on with it. Still have so many appointments. And I still have my exchange surgery coming up and who knows what's going to happen with that. So I still, even though I'm done with active treatment, I still feel very much in the middle of, like the trauma is still happening. And so it's kind of hard to process that until you have like a little bit more distance. I think in a couple years I might be able to feel into that a little bit more. My, I would say honestly, my main way of dealing with it is disassociation. I, from the very beginning when I was diagnosed, I have disassociated hard. Um, yes, and it has, it, it, I know my therapist has told me it's an important thing that your nervous system is doing to protect you. You shouldn't be scared of it. K: It's amazing. M: I try to remind myself of that when I'm, when things happen and feel like I should be crying and I'm not because I actually feel nothing. Um, I think what's wrong with me? And I'm no, it's not wrong with me. My nervous system is protecting itself. It's okay, Meryl. You'll cry later about it. Um Yeah, so that's what I've honestly the main way I deal with it and medication. K: Thanks for that. Okay. Let's talk a little bit about your family and the dynamics and your kids, how you've sorted through just how to talk to them and love yourself also. M: Yeah. When I was diagnosed, my younger son was four and my older son was eight. I would say being a mom of young children and going through the treatments that I went through is probably going through being the hardest thing that I've ever had to do in my life. It's already hard enough to be a mom, and it's already hard enough to be a breast cancer patient in the situation that I was in. But those two things don't really combine well, you know, it's, it was extremely difficult, um, because, and then also just with my, I have a master's degree in early childhood and childhood education. And one of the main things I was focusing on in my classes is how to talk to children in a developmentally appropriate way. All of my work is around, um, developmentally appropriate instruction. I thought very, very deeply about how I was going to talk to them about it and what I was going to let them know. I was very, very purposeful the whole way through. The first thing that I did was I primed them by letting them know that I was having the biopsy. And letting them know that I was going to have a boo boo on my breast and we would have to be careful around it. That was on purpose. I think some people might think, oh, just keep that to yourself. Don't say anything until you're diagnosed. But I did that on purpose because I didn't want the diagnosis to be a huge surprise out of nowhere. I wanted them to kind of know there was something going on so that when I did eventually tell them, they would know that, you know, there was something leading up to this. I talk to my four year old about it a lot differently than I talk to my eight year old about it. And it's, for parents, it's very much case by case with your kid, where they are developmentally. But my eight year old is, has always been highly verbal, is highly intelligent, and is very, very interested in science. And so, kind of took that, that road with him, the science road, when I was explaining things. So for him, I said I think there might be something wrong or sick inside my breast and they need to take a little sample of it to test it under a microscope and see if it's sick. And then with my four year old, it was, “there's a boo boo and mommy has an owie and we have to be careful with her breasts now.” And then, um, when I was eventually diagnosed, first thing, I didn't tell my four year old right away, I spoke to my eight year old and I said, “have you ever heard the word cancer before?” And he said, yeah, I have. And I think it's really important to first see what a child already knows, see maybe what misconceptions they have, and then fill in the blanks, you know, kind of go off cause you don't want to overwhelm with information. So kind of just see what, what they already know. And unfortunately there was a mom who had passed away from breast cancer the year before in his school, and so that was his association. That was the basis of his knowledge. Um, but I let him know that not everybody dies from cancer. Um, I let him know, you know, remember when I got that test? It came back that I do have cancer inside my breast. And he said, “okay, well, why don't they just cut it off?” said, “you're so smart. They're going to.” And he went, “what?” And I said, “yeah, you're thinking just like the doctors, not yet, but eventually they are, they're going to take, do surgery to get it out. That's exactly right.” I said, “but the first thing I'm going to do is I'm going to have to take some really yucky medicine—it has a kind of funny side effect.” Because I knew, especially with kids, the main thing that they're really going to focus on is what's concrete, what's right in front of them. And that is that my beautiful long brown hair was about to go away. I said, “it has kind of a funny side effect. And the side effect is that it's going to make all my hair fall out.” But before I had told him I was prepared, I had put a call out on my Instagram to send me photos of beautiful bald women. And I have, and I still have it on my Instagram as a highlight reel. And so I had the highlight reel already of all these beautiful, gorgeous women, bald women, all different shapes and sizes and looks. He was like, Oh my God, really? You're going to lose your hair. And I said that I am going to be a beautiful bald woman. Would you like to see some other beautiful bald women? And he said, yeah, sure. And so we went through the, all the pictures of all these beautiful bald women. And he was like, wow, they look so cool. Like Natalie Portman in V for Vendetta. She's so cool. And yeah, he was, so he was excited. He was like, okay, great. And Halloween was, um, coming up. It was July, but my kids start thinking about Halloween in July. And he said, you could do a really cool Halloween costume with your bald head. And I was like, yeah, that's a great idea. He was excited about that. So that was, that was sort of the first way that I spoke to my eight year old about it. And I also told him in that conversation, really the science, more of the science of cancer, their cells, you know, cells divide. He said, Oh yeah, I know that. And that some are dividing too fast and they're making mistakes. And it's, you know, it's, um, and it's going to make me sick. And, you know, explaining it in that way. With my four year old, I just told him “mommy's booby is sick. There's something sick inside mommy's booby. And so I have to take yucky medicine. And then I said the same thing about the funny side effect of me losing my hair” and showed him the bald pictures. Um, but if you know any four year olds, you know, it was kind of like, yeah, okay, for five minutes I'm locked in. I get it. And then it's sort of in one ear out the other very egocentric, totally normal for a four year old to not really care what's going on with anybody else except for themselves. And to some extent that was a benefit, you know, he wasn't really overly concerned with what was going on with me. I was going to chemotherapy while he was at school, so I think it was more the ways in which I changed as a mother that my four year old picked up on. I mean, it was not just picked up on, it was blatant in his face. I was his primary attachment. I've always been a very hands on mother, um, because of my business and my expertise and specialty. I've just always wanted to be that stay at home mom, really in there with my kids emotionally, taking care of their every need. And suddenly was not able to do that. So my four year old picked up on that, and he, over the course of my treatment, experienced quite a regression. I would say now, he is definitely, um, has a bit of a delay with his emotional development. His emotions, he's five now and he's emotionally much more like a three and a half or a four year old. When people go through trauma, sometimes they can get stuck, you know. In their developmental phase with children, especially we see that, um, and I think that's what's happened to him is he's a little stuck at three, three and a half, four, and we're going to take this year to really try to heal and get back to normal. Yes, and then my eight year old, um, with each different phase, I didn't tell him “first I'm gonna have chemo, then I'm gonna have surgery,” you know, I didn't go through all the steps, it was what was present, what was in the moment, what was happening in the moment, and then I waited to tell them about, I was really nervous about the surgery, cause they're very physical, you know, two boys are always wrestling and they always want to jump on me or have me pick them up or carry them and all this stuff. And I was really, really nervous about them hurting me after my surgery, which is why I went to my parents house immediately post op. And I was at my parents house for 10 days. It's the longest I've been away from my kids. It was really, really hard to be away. And I'm very, very thankful for my husband for stepping up and just solo parenting for 10 days. And once, once I got my drains out, I felt like I could be around my kids. It was when the drains were in that I felt they could pull it by accident or, you know, make it pop. And you know, all this kind of gross stuff that we do not want to happen. So once my drains were out, I came home and I had told them before I left that I was going to have surgery on my breasts and that they were going to be really painful and tender for a while, and we practiced safe ways to hug me. So with my four year old and my eight year old, I got on the floor and I said, okay, so imagine you can't touch here. How can you hug mom? And Sidney, my younger one, went around the back and hugged me from behind. We practiced side hugs. I said, when we read at night, you can't sit in my lap, but you could sit and lean on my arm. Um, and we practiced all the different safe ways to touch me and they were very good when I came home, they remembered, they, they took really, really good care of me and were really, really careful. And I mean, with breast cancer, nobody wants breast cancer. Nobody wants to have to deal with any of these things, but what an amazing lesson in taking care of someone you love. I wish they didn't learn that lesson right now, you know, maybe in a few years. But they did, and they, they took amazing care of me, and they were really, really careful, and I think it was that prep work that we did that was so helpful in the moment. When I was going through radiation, I honestly didn't even mention it to my younger son because it's so abstract. I really don't think he would understand. I explained it to my older son again, from the science point of view, because he was interested in knowing about that. And then I let them both know when I was done with active treatment that I was all done and that I was, I was all better. You know, I was, uh, I, I didn't mention this before, but, um, after my surgery, when I got my pathology back, I did have a complete response to the chemotherapy. And so after my radiation, I was able to tell my kids that I was cancer free and, you know, we were all very happy and excited about that. But there's definitely been, there's been a, there's a long lasting stain, I would say, on the emotional life of my family because of it, and we're still, we're still recovering from it. still yeah. Yeah, especially my younger son. K: I can see you as you're talking. I can see like listeners in the future coming to you for support and advice in this area. Have you thought about doing work with cancer patients around parenting? M: Yes, absolutely. I have thought of that, so I mentioned that I was not able to continue teaching my classes through my company romp and rollick and I've been the whole time in treatment since then thinking about what I want to do with that business. And I have in the past I've done quite a bit of consulting work in different areas. Some of it has been with families, supporting them in different ways. And so I would just add support through cancer diagnosis to one of the other ways I help families with currently, which is like behavior issues, feeding, education issues, sleep issues, you know, all those kind of sticky areas with early childhood. And yeah, I'll just add cancer diagnosis to that list for sure. I'm, I'm available for that. Yeah, I'm, I'm already available for that, that support. K: Cool. Yeah. I can see that you would have people lining up for that because that seems like something that is very needed in our community. M: I think so because um, you know when you're when you're a parent you're not given a manual on how to have kids, you know it's this crazy thing that everyone talks about—you just go home with a baby and they're like good luck! For all of the quote unquote normal things that parents go through there's you know There's huge amounts of information online now. There's people who are selling their courses on sleep training, but then there's also Facebook groups and Instagram content providers that talk about all these different normal, quote unquote, normal parenting things. When it comes to parenting through chronic illness or parenting through something like a cancer diagnosis, there's a lot less information. I had mentioned before I had a really hard time with chemotherapy. It was extremely hard on my body. And I also really tried to maintain normal. And I think that that's really important as a parent. And that's one of the hardest things about having a parent with cancer, being a parent with cancer is that you don't, you want this to be an adult problem, not a kid problem. So they really shouldn't see all the suffering. They don't need to hear you complain that you're nauseous. They don't, they really, it should not be, they're busy being kids. Don't put it on them. They don't need to know. But unfortunately, sometimes when you literally cannot eat, they're going to notice. So there was a day at dinner, Where I could not eat what my husband made, there was just no way that was going to happen. I was so nauseous. So he made me some oatmeal and I was even having trouble eating that. So, but I wanted to sit with my family at dinner, you know, trying to maintain normal. You know, that's when we, my every day we have dinner together. It's really important to me. Talk about our days. Was sitting there trying so hard to eat the oatmeal. And my eight year old came up to me and he put his arm around me and he said, “Mom, It's okay. Just eat a little bit. You're not gonna die.” It just broke my heart. Um, because he was so worried about me, obviously. Um, Thinking that, you know, if I don't eat, I'm going to die. Cause I did lose a lot of weight and I was, I was not looking good. And I had already at that point been in the hospital once. And just to hear how worried he was for me, this is when I was doing the red devil. So at that point I decided that I was, after my infusions, I was going to be at my parents house for my worst days. So, um, from then on for the, I think the last three infusions I went to my parents house for about three nights during the, the worst days because I just didn't, I, I just had a long conversation with my husband and I thought pros and cons, mom's gone—that's really hard, but you don't have to see me thinking that I'm about to die. That's probably better. Um, and then for my husband, I'm not going to be here, but I'm not going to help anyway. I'm a patient at that point. You would have to take care of me. So how about I just go to my parents house, they take care of me, and then you, instead of having to take care of my kids and me, you can just take care of the kids. Um, and that would be advice that I would give to any parent. If you have a support system nearby, and you're able to step away during your hardest days of chemotherapy, it seems unthinkable to parents to purposefully miss time with your kids, especially when you're going through something like this and you might be thinking about your mortality a lot and how much time do I really have with my kids, but it is really important for them not to see us so sick because they don't understand that you have to go through this really hard period to be better. You know, they just think you're really sick, you're gonna die. You know, it's so scary. It's so so scary and so that is what I did for the rest of my chemotherapy and like I said, that's what I did after my surgery and I wish I could do that after my next surgery, but unfortunately, that's not available for me anymore because this summer my mom was diagnosed with ovarian cancer And so she can't be my caretaker anymore because you know, she's, she's going through her own things. So I'm gonna have to figure out something else for January for when I have my extreme surgery. That's something that I'm talking to my husband about right now is, what are we going to do about that? Who's going to take care of me? K: And that reminds me to ask you about the study that you and your family have learned about and entered yourselves into. Can you talk a little bit about that? M: Yeah. So I had a meeting with the genetic counselor at City of Hope and she was flummoxed by me and my sister having both having triple negative breast cancer. We were both tested and have absolutely no genetic markers for predisposition to cancer. And my genetic counselor has suggested that I get my RNA tested which I really can't speak on I don't understand I haven't really googled it yet, but I recently gave a blood sample for that. She said sometimes we can find things in the RNA. So I'll be interested to see about that and then I mentioned to her, you know, since I had first made the appointment and did all my paperwork between that time and the appointment, my mom was diagnosed with ovarian cancer. So I let her know and she said, Oh, well, um, there is a study out of the university of Washington. Um, I wish I knew the doctor's name, but it's the same doctor who identified the BRCA1 genes. She’s looking for more genes. And so families that have a history of at least three people who have breast or gynecological cancers, they can submit their blood and get the whole genotype and they keep it on file and they basically use it to try to identify new genes. And I think she called it the mystery family study, which is kind of a cool name. And so my sister and my mom both agreed. And so we're all submitting our blood samples and the genetic counselor at City of Hope said to me, unfortunately I can't tell you why you've got cancer now, but if you call me back every two years, I bet over the next 10 years, I'll be able to tell you why. So I thought that was really interesting that, you know, they're, they're identifying new genes all the time. And I, it would be so cool if my family was able to help, to help with that. Because it's really, it was especially when it was just me and my sister being diagnosed five months apart. It, it was so confusing. It is still like, so confusing. Like, why is this happening? We have no history of breast cancer. Is it environmental? Is it genetic? And they just don't have the gene yet. And it, it would be really, really great to know why. K: Yeah. Well, we've reached the end of our hour, and I wish that I could ask you a few more questions, but I'm going to keep it at that. But I definitely want to hear all of your handles. I know you have at least three Instagram accounts, just like I do. And I don't know if you want to share all of them, but I enjoy all three of them personally. M: Thank you so much. So, um, I have my own podcast, as you mentioned, it's called The Story of Captain Charlotte. It's a nautical adventure series that's not just for kids, a lot of adults enjoy it too. And you can find that anywhere where you find your podcasts, The Story of Captain Charlotte. You can follow us on Instagram at @TheStoryofCaptainCharlotte. I also have my personal Instagram where I share my all of the information about cancer and my Sjogren's, and that's at @MeryMeryl; then I have my business Instagram, at @RompAndRollick, and that one I'm not very active on right now. I'm still, like I said, figuring out what I'm going to do with that business. Um, but if you go on there, you will see some, a lot of very, very beautiful photos of children enjoying sensory experiences and child directed art and story time. And it's a beautiful Instagram to look at. And hopefully you'll see more there soon. K: Is Instagram the main place that you connect with people? M: Yeah. Instagram is. Yeah. K: Cool. Well, thank you, Meryl, for being such an open hearted storyteller and sharing so much of the hard parts of your story. It's really important to me to tell different sides, even though, as you've said, Sjogrens is a very unusual side effect of keytruda, I think your story is so important and. I'm so glad that you were willing to share it here. M: Thank you so much for having me. …
Today I'm reflecting on last week's interview with Anna Hopkins, who spoke of Breast Implant Illness and the experience of going flat after 18 years with implants. Support my work by making a donation here: https://liberapay.com/abreastcancerdiary/ Watch this episode on YouTube here: https://youtu.be/ABRIwo1uo2I Links from today's episode: Breast Implant Illness Articles and Resources: https://www.breastcancer.org/treatment/surgery/breast-reconstruction/types/implant-reconstruction/illness/breast-implant-illness https://www.healingbreastimplantillness.com/ Anna's YouTube Channel: https://youtube.com/@closetlady?si=73mWb6L4ipUc13fE Anna's Instagram account: https://www.instagram.com/closetladyflatfashion/ Transcript: Today, I want to reflect on last week's interview with Anna Hopkins, if you're watching this podcast on YouTube this week, you will notice that I have a lot of my stand tall materials behind me and on me. we just got our new banners for the new breast cancer awareness month and all the walks this year in October and, uh, had an early walk this year in Oregon. So I got the banner a little early and I've got it on the wall behind me cause we just had our kickoff rally for stand tall for the year. Stand tall is the main flat organization that I'm affiliated with and it's really just present at breast cancer walks and Advocating for flat awareness, flat visibility and flat pride in the community. That's not our official mission. That's just my words. But you can see that our slogan this year is "Two, One, or None,. Let's stand tall together" so we're not. Pitting ourselves against people who've had implants. We are standing United with them as people who've been through breast cancer and had mastectomies. And, that's really what Anna and I were talking about this week or last week on the podcast. So I thought I would include that in my YouTube presentation. My t shirt here is Wendy Sage, who has been the stand tall mascot, and she's holding a sign that says body positive with a pink ribbon on it. A lot of us flatties have resisted the pink ribbon because of all the controversy around it, but I think we're finally most of us are embracing it now as the sign of our community as a whole, even though it comes with a lot of baggage. So, check out Stand Tall AFC and their new website. They've got an amazing directory of flat resources, both flat walks and flat groups that you might want to find in your area if you're interested. But Anna's story was primarily around the incidence of breast implant illness. And this is something I am not an expert in. I don't have a lot of research background in, and so I'm going to point you to resources in the show notes for that one. This is something that has been very shrouded in our community of breast cancer survivors up until recently. With the advent of Facebook and Instagram and the sharing of resources there, we have been able to identify, in our community just so much more quickly. Those people who have gotten sick because of their breast implants. I'm not going to quote any statistics because they're ever changing, but a good amount of people who get breast implants are not able to live with them long term. They have, mostly autoimmune reactions as Anna did. And of course, not until Anna actually had her second set of implants taken out, did she learn about her breast implant illness and, identify that it was her first set of implants that started her down that cascade of what she thought was allergies ended up being autoimmune issues and her second set of implants. She had an even more strong reaction to, but she lived 10 years with them nonetheless, and lived with all of those symptoms for all those years. And then was kind of set free from them in the end when she. decided after 10 years that she wanted them out a lot of people in the flat community are what we call Explanters they are people who have had implants in the past and have gone flat after having implants I didn't realize that when I first joined the flat community. I thought most people were like me and Had gone There's a phrase for it, straight to flat. I don't ever use that phrase, but it is a phrase that is sometimes used to differentiate those who have had explants in or implants in the past and had them explanted. And those of us who just went directly to after mastectomy to flatness like myself. And so I would say out of everyone I've met in the flat community, Probably half have explanted after having implants for a significant amount of time and being very, very uncomfortable with them physically. Some women are also uncomfortable with them psychologically, kind of the way that I and Anna have described. Not feeling ourselves when we're wearing prosthetics. Some women also feel like they're not themselves wearing implants, but usually it's more of a physical symptom, physical sickness, and really it's largely autoimmune kinds of symptoms that people get when they're afflicted with. Breast implant illness, which is actually a thing. It's a medical term. And like I said, I'll link to some information in the show notes. Another part of Anna's story that I wanted to reflect on is the fact that her doctors, when she insisted on getting her implants out, her doctors then did the extremely bullying and psychologically abusive move of sending her to get a psychological evaluation. And I'm so grateful that Anna was willing to tell that part of her story. It is a very shameful and humiliating experience to be sent by any medical professional to have a psychological evaluation, especially after you've made it clear to them that you are uncomfortable with part of your body that's been causing sickness and yet it is pretty common even in these last few years, much more common, I think decades ago, but as Anna shared, not even that long ago, um, in, at least in her region, it was considered normative to send a woman for a psych eval after her expression of discomfort with her womanly shape is how I think the. medical professionals interpret it when really it was just the implants that she was having a problem with. If they could have heard her more distinctly and, um, clearly, I think that's what she was expressing. So, she didn't talk a lot about how that made her feel, but I just, I just wanted to honor the fact that a lot of women go through that very, very Painful and insulting process, and it really is medical battery, in my opinion, to do that to any person to pretend that their, their desire for change or for healing, implies that there's something wrong with their mind or their emotional health. I loved Anna's, very kind of visceral and physical description of her saying goodbye to her breasts and her realization that they were going to be changing and that she wouldn't have that relationship with her nipples. Um, and I just wanted to also kind of point out that just really poignant part of her story. And. And the loss that we all go through, especially when we just don't really know what it's going to feel like to not have our natural breasts. Um, there's a lot of fear of the unknown. I think that happens before mastectomy. And then I so related to the part of her story where she talked about being pleasantly surprised after mastectomy and being delighted with the childlike power that she had, um, her word was power and. Uh, the power of, a, free and joyful little girl and just being herself and not having to carry the baggage of all the, womanly associations and sexualized associations that we carry as grown women. I think that's worth pointing out. I certainly relate to that myself, and that's definitely a part of my joy in being flat myself. I think another part of the interview that was really important to me was connecting with Anna over my memory of being with her. I first met Anna in a yoga class that she was teaching as a part of a retreat for flatties in Palm Springs. And she was teaching us Kundalini yoga. And it was, I think my second time taking a Kundalini class and I was just so struck with her beauty and her grace and calm. And, the next day we went to a breast cancer walk together with stand tall AFC. And, Anna decided to take her shirt off and it was the first time. And she'd been to walks before where women had taken their shirts off as flatties, but that was the first time she was willing to do so herself. And I just happened to be walking next to her when she did it. And wow, I mean, it just bowls you over the emotion of that. Experience being surrounded by other women that have lost their breasts and them all also feeling the heavy and also the light implications of that experience of sharing one's body. I want to talk a little bit about what that's like because it's, it's easy to forget kind of the novelty of what it's like to be in a breast cancer walk and see another woman, especially a flatty without her shirt on. You tend to think as someone who's grown up in the Northwest where there are nudists. And, you know, nudity is not completely unheard of there are, um, mostly hot springs, I guess, around here that are allowing of nudity. And so I've been around some nudity and I'm sure there are nudist communities too, but I've never been a part of that. And then I just went to Burning Man, my last, episode, actually, before Anna's interview was. about my experience at Burning Man and Burning Man is a place where nudity is allowed. And I probably saw a dozen people over the week that were nude, not a lot. Um, some of them riding bikes and some of them walking, some of them partially nude if they're women and fully nude if they were men. And this is different when you're at a breast cancer walk. It is not the same feeling as seeing someone who is exhibitionally being nude, in public. It's a much more vulnerable, much more tender kind of experience by necessity. There is no exhibitionism of it. Um, in terms of like what I'm reading or what I'm feeling when I'm experiencing it, it is just pure vulnerability and sharing. And I personally, when I'm around someone, Nude in the context of Burning Man or Hot Springs, I tend to look away. I don't feel comfortable looking at their bodies, but in a flat Community context, I have learned that it is safe to not look away, and it is actually welcome to look at each other's bodies and appreciate the little differences in the outcomes that we received surgically and to comment on those. That's a welcome thing in our community. It's just a, it's been a really safe community for me and my friends. And that's a part of our stories that may not. Seem relatable to the average person listening to this podcast, but I just want to reiterate how important it's been to me for me to feel the freedom in our podcast to tell Anna how beautiful her flat closure was and to acknowledge the fact that I had looked closely at her body. It's not a common experience and it's not something. That someone like me and my culture and my social upbringing, would normally feel comfortable doing, but it's really important and I feel pretty strongly about it. Especially when someone has a really nice flat closure. It's. It seems really important to me to compliment them on it and to compliment their surgeon on it, because it is so rare in our community to have an aesthetic flat closure, which is what AFC stands for. And as is now a medical term that we can refer to when we're talking to surgeons, there's still an ongoing battle to get. Aesthetic flat closure in the surgical setting. A lot of surgeons are fearful that they will not be reimbursed adequately for it. And we're still working on legislation to correct that and to get that written into the women's rights, bill or act that is allowing for insurance to cover or demanding that insurance cover things like implants, and so, at Stand Tall AFC, we are advocating for the allowance of language to add, chest wall reconstruction to the verbiage in the women's, rights and reproductive act. I probably haven't said that correctly, so I will refer to the act below in the show notes in the correct form, but, that's one of the new platforms that Stand Tall is working on with an organization called Not Putting on a Shirt, which is actually their umbrella organization. So Anna's flat closure being a true, aesthetic flat closure with no extra skin, no lumps and bumps and ripples and dog ears, which is what we call this little, area that if you're watching on YouTube right now, you can see on my underarm. I've got a little lump, just a little one. Most have bigger ones. I can't really complain, but little lump of extra fatty skin that, would normally have. Sat right above my breast and under my underarm. That just kind of sticks out and that's really, really common. Most surgeons will tell you it's unavoidable and unfixable. Certainly all of my surgeons have told me that, but Anna having been a woman who was quite thin and yet had quite large breasts, she was able to, Actually achieve a true aesthetic flat closure with no extra lumps on the side or ripples, at least not any obvious ripples. I'm sure, like she said, she still sees a little bit of bumpiness and lumpiness when she looks in the mirror. We all see some kind of imperfection, I'm sure, but I just, I love that I am free as her friend in this community to comment on her body and commend her surgeon for the good work that he was able to do for her in that way. And I hope that we can all push our surgeons to strive for better work in that area. None of us want to go back under anesthesia and get revision after revision after revision. I certainly don't. Um, But it's really important to get it right the first time so that we don't have to go back under anesthesia and feel like we're being petty to go back and ask for part of our body to be taken off after surgery. So that's that's a really important platform that I will stay on and get back on that. soap box probably pretty frequently on the podcast. It's a big one for us. Flatties really important. Anna talked about how important the flat community has been to her online and how she started her career as an influencer, a fashion influencer on Instagram and YouTube because the other flatties really encouraged her to keep going with her fashion experiments and sharing her photos. And like she said, she was painfully shy. Going into this experience and she has now gained a real following and has a lot of fans that really thank her for their comfort in their clothes as flatties and their ability to play with fashion and experiment and share. Together with others, and so Anna has become a really pivotal part of the flat community online unexpectedly, and, she really gave a lot of credit to the folks that came before her in this community. And I just want to share how open this community is to other women that have lost their breasts. It's really a very accessible community. And like I said, Stand Tall has an amazing directory of different flat groups all across the country and across the world. It's growing all the time. And if you want to see some flatties in person, whether you're a flattie or not, you can find the places, where we are present at the Stand Tall website and places where we've gone and walked in breast cancer walks before together. If you're here in the Northwest, we have. A lot of presence in Seattle and Portland. There's a Medford walk this year that will be pretty well attended, I think, too. And, maybe Centralia. There's a new walk that's just surfacing in Centralia, which is halfway between Seattle and Portland. We might show up to that one as well, but the main one in Portland, if you're local, that's happening this year is at the University of Portland. It's the Making Strides American Cancer Society Walk. We'll have a table there for stand tall. I will be at that table if you'd like to come by and say hi. It's at University of Portland in North Portland. And rumor has it that most of our Flattie troop will be there. So we'll be there Representing with our shirts off. So if you'd like to see some flat bodies Watch for that in person or online. There'll be some pictures. I'm sure that'll come out online Sometime during the last week of October That walk will be October 20th, I believe so Anna will not be there, but I will be there and, my Portland Flattie group will be there. And Miriam, who I interviewed last on the podcast will be up at the same walk in Seattle, the Making Strides American Cancer Society walk in October . And she'll be at the table as well. So you can see Miriam as a half flat woman. She's still got one breast, but she'll be, I'm sure wearing a bikini or a half a bikini so that she's got one of her breasts covered and the flat side showing. So again, I just want to give Anna, lots of credit for being a big part of the flat community and more visible part of the flat community online and kind of holding that banner high for us in her fashion ways. She just has a really particular niche and a special gift and a real playfulness around it too. She's got so much humility. She doesn't claim to be an expert or to know anything about fashion, you know, in terms of, right or wrong, but she just experiments a lot and has fun with her clothes. So I definitely, encourage you to go and check out, Closet Lady Flattie Fashions on Instagram and YouTube. So hopefully you can find her there and you can interact with her there too. She's really responsive. If you comment or ask questions or if you have a question about fashion or a quandary or a dilemma or something she hasn't covered in any of her short tutorials in the past. Next week, I am interviewing. My friend, Meryl Opsal, she is a new friend. She's a fellow podcaster and pretty recently on Instagram, just telling her heart wrenching story of some of the side effects of her medication from , having triple negative breast cancer. Meryl is a truth teller and an amazing storyteller. And so I hope you'll tune in next Wednesday to hear her story. It is more of a typical story with chemo and radiation being an awful, gauntlet to get through and Meryl does it with so much grace. And she also talks a lot in our interview about her parenting journey and how she's learned to talk to her kids about her breast cancer experience as they see her suffering through it, and just being real with them, with the right language. So yeah, check out my next interview next week on Wednesday with Meryl and I'll talk to you then.…
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