A Breast Cancer Diary

My new friend Lori is an amazing advocate for the power of exercise oncology and she's a wonderful hostess and educator here in the Northwest for those who want to try dragonboat paddling. As a 17 year survivor of breast cancer, she's met a lot of other breast cancer patients and her insights are so clear around one big value: just keep moving. I'm looking forward to having her back for a part two discussion. This was not enough for me!

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Transcript:

My guest today is Lori Godfrey, another local breast cancer survivor in my own community. She lives in Banks, Oregon, and she is retired from her role as senior vice president at KeyBank. I wanted to talk to Lori today about her experience on a team of dragon boat paddlers called the Rose City Rockets. She is a breast cancer survivor with a history of a diagnosis of stage 3B. Ductal breast cancer at age 49 in 2008, and she has not had a recurrence since. Welcome, Lori.

L: Oh, thank you so much for having me today. Really enjoy it, being here today.

K:

Yeah, and for those of you who just watched my YouTube version of the interview with Danielle in the last couple of episodes, Lori is featured in that, in those gorgeous photos that we had as the montage in the background. So you might recognize her from that. So Lori, tell me about your experience joining this local Dragonboat team and what that's been like. How did you find them? How did you find out about them? What has that been like for you?

L:

My favorite subject, so I'm glad to be able to talk about it today. So the Rose City Rockets are an all cancer dragon boat team that was established just last year, officially in 2023, but we were on the water for the first time in 2024. I'm actually the founder, not only the founder, but the head coach for. Rose City Rockets. I started dragon boating with an all breast cancer team 14 years ago. And that's the Pink Phoenix dragon boat team that's also located here in Portland. They were the first all cancer, excuse me, all breast cancer team in the US. They were the second to be established globally. And that started a great big trend of women getting on boats for the first time in their lives, which was really my experience. I met Pink Phoenix, as I said, so many years ago, here in Portland at a Susan G. Komen walk. And they had a booth, I went up to talk with them, and within the week I was on the boat for the first time with them. That started a great, um, really a lifelong relationship. change for me. Um, I had been an athlete my entire life and was really felt very sidelined by my breast cancer. And that experience alone was what, and has kept me going in dragon boating, is that knowledge that I'm a lifetime learner, I'm a lifetime athlete, I'm looking for things that I can do. Those that have had a breast cancer diagnosis some 20 plus years ago given different experiences. information than women today. Previously, they were, uh, all concerned and still are concerned about lymphedema. So women that have breast cancer may have massive, uh, surgeries, obviously a mastectomy being a primary one. And when they do that kind of surgery, you know, you have these scars and these scar tissues that are there afterwards. And they're very difficult to break through and the lymphatic system starts to, um, get compromised, obviously. And you start, you can get lymphedema. So women were told, don't do repetition, don't do repetitive, uh, repetitive motions and no more vacuuming, no more tennis, no more golf. So some of those sports that women would be able to do for a lifetime were no longer. available to them. So, uh, Dr. Don McKenzie, who is out of Vancouver, B. C., um, started a clinical trial, and his clinical trial was to establish and determine if women that did a repetitive motion, such as in paddling, uh, if they would have lymphedema, if they would have a recurrence or an episode or a flare of lymphedema. So, they pulled together these women, approximately 24 of them, to be in that first clinical trial that also was a team. Dr. Don happened to be a paddler And so he trained those women to be in a competition, had them on the water. They competed. He gathered the information that he needed and then when they were finished, attempted to disband them. And they refused. Basically, they were having the time of their lives and they said, no, we're not going to go. Thank you very much. So, that first breast cancer team, uh, called "Breast in the Boat" and they're in Canada, in Vancouver, BC. And there's lots of that have found breast cancer, excuse me, um, paddling through breast cancer survivorship through, uh, just that support group that's there. So that's how I started. I began as a local paddler and from there I was, within a couple of years, became what's known as a pickup paddler and a utility paddler and I started paddling with other teams around the area and then regionally and then one thing led to the next and I realized that Dragon Boating wasn't just happening in Portland, it was happening regionally, it was happening nationally, it was also happening globally. And that'sreally what changed my life, was those global outreach opportunities that I've been able to do via paddling. I've been able to make all these connections. with other breast cancer survivors throughout the globe that have really been life changing.

K:

That's great. So, you started doing it on, like, a weekly basis? Monthly? Or is it seasonal? How does it work?

L:

That's a great question. So I think a lot of people, especially here in Portland, if anybody's listening that knows Portland, knows the Rose Festival boats and the Rose. Yes, I was a paddler. I've done dragon boating before. And what they're referring to typically are the Rose Festival boats that take place in June and where the fleet comes in and we have it part of our Rose Festival celebration that we have here in Portland. that's all that I really knew about, um, the Rose Festival and about dragon boating happened to be that particular event. But that's not all that it is. That's a unique, very stylized boat that is not really used for anything but a festival. There are racing hulls, long canoes that we use globally. And so I started with Pink Phoenix. Uh, we paddled Monday, Wednesday, Friday. Also once, excuse me, Monday, Wednesday, Saturday mornings is Pink Phoenix schedule. And so it was three times a week. And so I just plugged into that experience three times a week. Never miss practice. Did it while I worked. Um, they work, they practice in the evenings. You know, it would just change my whole life around to have a block of time in the evenings that I wouldn't be disturbed. And that was the greatest thing about dragon boating for me was the quiet. I was able to take my phone, put it on silence for the evening. Get on the water and only be responsible for myself and my team. And listen to the water, listen to the air, experience being outside, and being on a great big huge river, that's really pretty demanding. And then learn a new sport as well at the same time. So it was, there's a lot to take in when you first start dragon boating.

K:

And so, you started on the Willamette. Are you still on the Willamette?

L:

Yeah, still on the Willamette. So, I've paddled all over the globe, and so that's taken me on to both rivers, like our Willamette. Also, I've paddled on lakes. There are lakes all over the world that we paddle on as well. And the ocean. So there's three different ways that we get on those, each one of those. of water are, have different demands. there's a couple of different styles of the stroke that happen, coast to coast. So you learn a style of stroke, and then you get proficient at that stroke. And it's interesting, as a Dragon Boat coach Um, I've learned that, and especially as a paddler as well, that there are so many different pieces of a particular stroke. It seems like it's one motion, but it's actually broken down, I think at least 20 different pieces of that particular stroke. Just like taking a swing in a, a golf swing or a tennis swing. It looks like it's one motion, but there's a lot of different things that are taking place along the way, foot placement, head placement, uh, velocity, just all kinds of ways to change what that stroke looks like.

K:

I'm dying to ask, how does it go for a newcomer? Does it take long to learn these things?

L:

Well, it's interesting. Um, some are very quick at it and some not as quick. So being athletic is helpful. I think the people that struggle the most are those that have come from as a kayaker. So they've come to us as a kayaker and there's a particular way that you stroke as a kayaker or that you do not stroke as a paddler. So there's sometime muscle memory. It's a real thing, right? We learn a muscle, um, it has a particular memory when you go to pick up a blade in the water. You may want to do it a certain way because your muscles remember that. it takes quite a bit of time to get, to build a new muscle memory over an old one. I think it's easier to establish a new one. So, kayakers tend to have a little bit more of a struggle. But they're comfortable on the water, so that's a positive. I learned very quickly. And, so I'll say that in fairness. I learned very quickly how to stay in time and how to stroke. And I continue to work, here I am 15 years later and I'm still working at particular pieces of my stroke. So it's never done. I worked at one element of my stroke for three seasons. every time I picked up my blade, every time I was in the water, I was working on a particular aspect and it took me three years to own that particular aspect. I know how difficult as a coach, I've learned how difficult it can be for some paddlers to pick up certain elements, but it just takes a lot of patience is what it takes.

K:

Yeah, makes sense. I'm really invested in getting more women out to do this and so I want to ask, is this like a normal sport where the coach is going to pressure you to perform at your absolute, you know, top performance and be extremely competitive or is it more about the social aspect and just being together?

L:

That's a great question. I think we get both in every, every time we're on the water. I get the social aspect, which is really not why I came to paddling. I came to paddling for the physical being. I wanted to do something and it really intrigued me that it was, had a breast cancer wrapper, but it was the sport at the gut of it. For me, that's really what it still remains is it's the sport first and then all this other stuff that comes with it. What comes with it is. It's simply the nice casual conversation I have with a woman that's going to be my bench mate that day, that may sit with me, that walks down the gangplank to get on the boat. We hug like crazy. We cry like crazy sometimes when somebody has difficult news. we share in the good news and we share in the bad news with each other. Um, the new trend that's happening across the globe now is a new trend which is the all cancer paddler. And so breast cancer paddlers have been able to be on the water for so long, for almost 30 years. Many times when I've come off the water successful as a breast cancer thriver paddler, others have asked me, spectators have asked me, ooh, I want, how'd you learn to do that? I want to be a paddler. How can I be on your team? And the news we share as a breast cancer paddler is, well, good news is you don't qualify to be on our team because it has to be all breast cancer survivors. But they'll say, well, yes, but I have lymphoma or skin cancer or, uh, you know, name the number of cancers that are out there. And what about me? It was the what about me, listening to people say what about me, that encouraged me to start another team that allows for all cancer as well as for men to participate. And that's really what I'm here to recruit to today is that we would love to have more women and more men for that matter, but more women in particular that would like to join the Rose City Rockets and just enjoy the camaraderie and then learn the sport. You feel so, um, empowered. It's incredible. I, that experience I would want for anybody, no matter breast cancer or not.

K:

Yeah. So how does someone join? Do they just show up and start?

L:

You can, you can. It's better to have a mentor like myself to help you get rolling. So if they contact me, I'm happy to get them all the information that they need. But basically for Rose City Rockets, we paddle on the Willamette. We begin March, which is coming up very soon. March 11th is a Tuesday. We wait until a daylight savings has happened and kind of brighten the sky up for us in the evenings. So we're there in the evening. We meet at 5:40 PM. We have 20 minutes of warm up then we get on the boats and I'm there with you as we have other coaches as well. So it's my self. I'm an advanced United StatesDragon Boat Federation Advanced Level Two Coach. Um, there's not very many of us, um, here in the West Coast in particular. My husband's also an advanced coach. And then we have other coaches that are on our squad as well that can help, especially the new paddler, get comfortable and teach them some of the very basics. You can't be wrong. You can only be right. We find a lot of wins. Uh, that's one of the things that I get complimented about specifically. is about how I'm able to help the paddler, find that value in what I'm teaching, be able and feel comfortable enough and confident enough in trying it, and failing. Cause you aren't always successful. Sometimes we fail at the things that we're trying, and that's okay. We can't expect, all of us cannot come to a new sport, or a new anything, and expect mastery.

K:

Absolutely, if a woman was looking at joining, let's say this coming March or, or next March, what muscle groups would she want to start working on? Would she do pull ups, push ups, tricep dips?

L:

There's a great number of exercises that we have that are specific to paddling and you've hit on most of them. So what we try to do is keep our hip flexors. Moving and flexible. So we do some great squats. We might do some hip flexor work prior. You know, some stretch, some static stretching there. And then get into more dynamic moves. So static is you're holding a stretch. And dynamic is activity, right? For those that don't know the difference. And so if you were to start out with, exercise bands and work on simply stretching above your head, stretching behind your shoulders, getting your shoulder blades down into your, back pockets is what I call it. So basically working on that back, working on back muscles, working on your shoulder muscles, um, lats, core um, your, your core. That's probably where you're going to go. It is a full body workout. So we're going to go literally from toes. To the head of your top of your head is going to be working when you're in the dragon boat sport So we'll work on those things. A lot of people think I got to have strong biceps Or I have to have strong upper body, um, physical strength in order to be a good paddler. It's not true, but I will say this, over the years I have developed bigger shoulders and bigger, yeah. So I have bigger back muscles and bigger shoulders than, than the average woman probably does. And certainly from my body style when I started, I've changed. My body has changed. To, in a good way. In a positive way.

K:

So it sounds like, more like a crew kind of setup where you're actually using your legs to push when you're paddling. Okay, I didn't realize that.

L:

That's right. So we have contact. It looks like we're sitting there, but actually we have a specific way that we place our feet and we utilize pressure on the bottom of the boat to do to go forward and to go backwards. You know, so we basically are doing this rotation while we sit, we rotate out to the catch to put our blade in the water, and then we do you rotate what we put pressure in the water to pull the boat forward. And so it's basically that's what we're looking to do is how do we pull the boat forward to get to the finish line. There is a lot to do, to paddling. I would say, I would, for a new paddler, try not to get too excited about those details. let me talk about clothing. So, of the things that people like, need to be experienced in gathering together before they come down to the water. So they're going to get physically, you don't have to be a physical specimen, a fitness specimen, you don't have to come out of the gym and be on the water. You can come to us just as you are. And then you're going to, you'll learn quickly about where your deficits are. And we can work on building those up. but everybody's got them. So don't feel like, well, mine's worse than everybody else's. It's not the case. Um, so you come to the water, dressed in layers. We use a lot of dry fit. So that's anything that you can get wet, and that can dry. So we use, um, no cotton. No cotton on the boat. I come with leggings usually that are dry fit. Everybody's got yoga pants or yoga leggings that they can start out in, and then you layer from there. So I'm going to have waterproof shoes on, or at least shoes that I can get wet. I use a Keen. Keens are very popular here in Portland. It's a hiking shoe that has water cut outs in it. They are used by most paddlers in Portland. And you can wear anything you like. Uh, waterproof shoes have become more, uh, tennis shoes have become more, available So people are using those now, too. And then from there, we're using a layer, a system of coats. So it's one long sleeve shirt. That's dry fit. Then I'm going to put a light jacket on that and then something waterproof over the top. And that's going to take me through most, most weather, most weather conditions in a hat of your choice, right? basically what you need to come on the water. Uh, we use, come with water because we need to be hydrated while we're out. we start on the, uh, practice time for Rose City Rockets. We practice from six o'clock until seven. We get off the water at seven and go home and then we'll see you again on Thursday. And then we do it again on Saturday morning. 9 40 a. m. And then we're out from 10 o'clock to 11 o'clock. The nice thing there is a social aspect on Saturday mornings in particular. There's a little, restaurant called Little River Cafe that's very close to where we are, where we go out to the river center marina and it's part of one of those restaurants that's local they're very good about our paddling gear, you know, dripping all over the place and they have coffee available. Also serve a nice breakfast and it's filled with paddlers on Saturday morning. So we have a lot of people sharing stories talking about the water and getting, you know, we recognize all kinds of other paddlers that are down there. Because we're, I've been part of that community for so long, that I know paddlers on every team, I've paddled with every team, almost, I've raced with them, um, so there's a lot of, a lot of that camaraderie that's there. It's, it's super fun.

K:

Do you think that most cities have room on a breast cancer paddleboat team at this moment in time? Like, is there room for people to join?

L:

I think they're always recruiting. There, there's a challenge, uh, with breast cancer teams, in particular. And, and it would be, hopefully it's true for our all cancer team as well. Now, all cancer, I'm saying that's our, Rose City Rockets--there's probably 50% of us that are breast cancer survivors. Yeah. So there's only room for 20 paddlers, right. So, if I have 20 that come out that's great, but I usually have 24, right, 21. So I've got a boat, I'm always growing. So you might find a team in a particular city that's already at capacity, they're managing. They'll figure out a way to put you on a boat. The way we work it right now is that we only have, a boat sits 20 people, 20 paddlers, 2 by 2. Right, so they sit like pistons in an engine, and everybody works together as one, going down the water. Um, the Rose City Rockets are only about 14 of us that are really Rose City Rockets. Then we have supporters that are helping us from other teams. That are not, that are not all cancer survivors. They come to us and help us fill in. Because as we continue to grow our team, we need to get on the water. So we're just reliant on other people to help us. And sometimes I have to go help a team do the same thing. Right? So it's about helping our community members, all of our paddling members, get on the water.

K:

Where would someone go? Is there like a national hub where you're looking for teams with openings?

L:

There's two of them. So the one for all cancer teams is the best resources to go out to the U. S. DBF. The United States Dragon Boat Federation has a great website out there that can show you all the breast cancer events that are taking place might be specific to breast cancer across the country. And then there's also one, a tab also for all cancer festivals that are happening. It also, there's another tab there that will show you where the teams are located across the country. I think for me, when I, as an example, if I wanted to travel to Denver, Colorado, and I want to see if there's a Dragaboat team there that I can paddle on. The first thing I might do is Breast Cancer Teams, Denver, Colorado. And I'll look for teams there, and if one shows up, I'll contact them and see if I can come and paddle with them. They're very accepting. We, again, it's a great big global community. And if somebody's traveling to a particular town, we're going to try, if they're visiting here, we're going to try to get them on a boat. Because it's, it's just fun to do. And it's part of our story, and it's how we build the community as well as our skills as paddlers. Being able to get on a crew with any team across the country or world. So that's another one way to look at it. Um, and then getting on Facebook is a great way to search. There's so many teams. I know that people are moving away from Facebook for a thousand reasons. And it happens to be where there's a lot of information regarding dragaboating. So, can't just throw it away. That's a great site to go into and just start looking. how I would find somebody a day if I wanted to paddle in any city in the country, I would look that way first.

K:

So the keywords would be dragon boating and dragon boat team, probably?

L:

if I'm looking specifically for, that would be for any dragon boat team, and if I want to find something specific to breast cancer, I could look on the USDBF site. Or, I could look at another one, I'm going to give you another acronym, IBCPC, it's the International Breast Cancer Paddling Commission, International Breast Cancer Paddling Commission. It's the overarching organization for all breast cancer crews globally. So it's a way to see who's building teams, what's happening in your community, what's happening in a particular part of the world that you might be interested in. I've done some outreach helping, uh, paddlers start giving a great example, a super duper story that I love. I was in Argentina with a group of women, all breast cancer survivors that I've paddled with. And that group, there was a team of us of about 10. We traveled to Argentina, we went to Nahuel, and we met, we had to put on a festival. And we trained, I think about 48 to 50 paddlers. women that were living in this very remote area, basically it's Patagonia, had learned and were learning to paddle in their kitchen chairs by themselves with a, with a broomstick. And they had never seen a boat the day that we showed up there. And it was so much fun to see these women, breast cancer survivors all, some super young, beyond young. It's incredible when you travel to other countries and see how young The women that are being diagnosed are. It's a sad fact. sure it's true here for the U.S., but you see, they're out more publicly, I think, maybe in other countries. I don't know, but I'm running into them there. Anyway, um, so they're learning to paddle with this broomstick in a chair. so we started out that way when we started training them in Nahuel in Patagonia. This is two years ago. And then got them in a boat. It was mayhem, chaos, exciting. And by the end of that day, it was a lot of tears shed and just an emotional I've never experienced anything like it. The women were so grateful. We were so proud to be able to share this sport. And at the core of it was just female energy. Just women, loving women, for the sake of loving. It was incredible. I just ran into somebody from there just a week ago. Uh, that knew me from that experience, and we just bawled our eyes out when we saw each other. was just, you know, and unexpectedly, I didn't expect to see her, didn't expect to cry my eyes out when I saw her. It was just, I'm still carrying that around. So it's those kinds of little pockets. life that are happening through dragon boating that are incredible. That's why everybody needs to get on a boat.

K:

I have two more questions about Dragon Body before we move on. One is, for those who are in debt because of their breast cancer medical bills, how much of a cost requirement is there to join a team?

L:

It's a great question. So it costs money to travel. No question. Right. And a lot of our teams do travel. There's some of that, but it shouldn't be what stops you from getting on a team. pink Phoenix is a great example. That's local. Same thing with, um, Rose city rockets. It's true for. I can think of a number of teams that it's true for, for here in Portland, that have scholarships available, for one. Um, it's not that expensive. Our fees for the year just to paddle, that's to get on the water three times a week, is 210 for the year. Uh, you can't get a gym membership for that. you can't get a, just a class, any one single class anywhere for that, for a year's worth of paddling three times a week. We have, we have gear, right? So you don't, we do wear a PFD, uh, paddling, uh, flotation device when we're on the water, so to make sure that we're all safe, and that's required here in our waterways. Uh, but we've got them to borrow down on the dock, so there's lots of ways you can kind of limp your way to, uh, paddling, and you wouldn't be alone. If somebody didn't have the money. wouldn't be alone coming in there with not having a lot of equipment or not really having a lot of cash. Um, we had a paddler last season that paddled with us. Um, well actually we've had many that are on scholarship. Um, there are ways. So if somebody lets me know that they want to be a paddler, I can find a way to get them on the water. It won't be a financial burden. To travel is another issue, but there's still lots of regional paddling that can be done. You know, where you carpool with somebody, that you share a room with somebody, you know, that you just do a lot of cost sharing and cost savings in that way. And you'll be surprised how, how inexpensive it can be to get to a venue. here in Portland would be Ridgefield, Washington, to Salem, Oregon, to Um, Vancouver Lake to, uh, where else can you go That's, there's several right there. You know, that people can attend.

K:

I was wondering, so I just started a local walkers team to do relays together year round, similar to what you're doing, a little bit less intensive, but one of the, so I named it walk away from breast cancer. I thought that was a clever name. And one of the gals that signed up said, um, She liked the name because she doesn't want to get together with other breast cancer survivors to talk about breast cancer. Is that kind of how your culture is? I kind of feel like it might be similar for you.

L

Very similar. And it's funny because there's a lot of resistance for women to be in a support group, right? I mean, so it's like, I don't want to get in a support group and talk about my. 3B and my, you know, and get into all the details about how many lymph nodes I had removed. While it's important, while it's important information, it is times we share that personally, one on one, when some weird thing has happened for somebody. Hey, I've got to go in and have another scan done. Something popped up on the last scan I had, I'm going in. It might be conversations like that. But the core of what we're doing. It rarely rarely comes up. It certainly doesn't come up on the boat. Um, we paddle. That's what we do. We paddle, and our goal is to paddle like every, if you will, like bodied, you know, or fully capable body. So that's one of the things that does happen, is that, know, we have the restrictions. I have no pectoral muscle on my right side. All removed surgically. I have nothing. How am I paddling? Well, I'm paddling because my other muscles are compensating. But I have a lot of scar tissue, so I've got a lot of issues that happen for me as a paddler that I have to work through. But that's just what happens. I may need a seasoned paddler or a seasoned breast cancer dragon boat paddler to help me understand what I need to do to accomplish what I'm trying to accomplish, whatever that task is. And so it might be nice to be able to talk to somebody about my specific problem, but it is not the core reason we're together. So, talking about the walking away from and not walking into a support group. I think that's really it. I think that if we weren't able to say that, I don't think we'd have the women that we do on our team. I can only think, honestly, of about three or four women that I know that are there for support first and paddling second. And that's saying something. I know hundreds of women that paddle.

K:

Okay, so it is available if you want to talk about what's going on with your, your current situation, but people aren't dwelling on it. They're not dwelling in the past. They're walking through it and walking away from it kind of.

L:

Yeah. And before we go off dragon boating, I wanted to say, you know, we were talking about recurrence was one of the things I wanted to bring up… So Dr. Don McKenzie, I'm going to circle back to him for a second. Right. So the science that he had about, yes, you don't get lymphedema when you paddle, went beyond that. He's continued to do research in these past 30 years, focused on breast cancer survivors specific to dragon boating. And he's found out all kinds of things, but one of the things that's happened with him is that he's determined, and there's science out, you can find these, I think these are published papers at this point, where you're, he's through a prescription is suggesting weightlifting while you're doing chemo. So actively getting very physical while you're doing chemo will keep, reduce your symptoms through chemo and also may reduce your chance of recurrence. This is where the science really becomes important is that it's not just, us talking about it and saying that, yes, this happened to me. we're really talking about scientific evidence where I paddle and I am limiting opportunity for recurrence. I had a stage 3B aggressive cancer diagnosis. I had a 20 percent chance of survivability. I had only one wish when I had my diagnosis, which was to see my granddaughter. Which I had none. My daughter wasn't even, you know, not in love, didn't have a relationship. And I had all these things that I wanted to see and dreamed about having. It was just a prayer. All those things have come true because I've been able to survive and thrive over these last decade and a half. I'm telling you, it's because of the nutrition, because of the "Walking away from cancer" that you're talking about. And dragon boating being on the water. So there's a lot of, a lot of data that's out there that show you that you can re reduce your recurrence. Can you do it with other sports? Maybe. I don't know but I can tell you that it's proven in dragon boating. So they've got showing that breast cancer survivors can have, you know, can reduce their recurrence. Blood cancers are also there as well as colon and prostate. They have data on all of those particular types of cancer as regarding dragon boating. It's pretty exciting.

K:

Yeah. Absolutely. And I'm, and that's why I'm moving in that direction with the podcast. I wanna learn more and more about different ways to do this with this exercise oncology concept. It's proven with walking too. So that's why I'm doing the walking and the relay teams myself.

L:

I think walking is such a key piece when new paddlers are with me or I'm getting ready to get back into full blown season, which starts again in March. I did my first half marathon and it was really wasn't so much about the half marathon It was about training for dragon boating. So I always had everything I do always seems to be geared towards being better physically so that I can do better as a dragon boater.

K:

That's great. It's very inspiring.

L:

I'm aging, right? And so that's the other thing that I, I coach an older team, a master's team, and there are women and men that are , 60 to 90 that are paddling. And what I, what I see about myself and what I see about senior citizens is that they change their, their stride as they get older. And they're basically taking their strides like this and they start to widen it out because they're widening their stance so that they don't fall. Right? So it's all about. Stability and stability exercises and there's quite a bit of that that goes on in dragon boating exercise that's very helpful that can help me long term for my whole life. So, stability, functional exercise, all of that is part of this can be achieved through this dragon boat sport.

K:

Okay. And you mentioned the full, full blown season. It starts in March. Does it end in the fall and take, take a break for the winter?

L:

To the end of October. So, for here, it's tough to be on the water. Unless you've got light. And so we try to as soon as this daylight savings happens on either end of the spring or fall, we get off the water. Not to say that we don't paddle in the evening, late in the evening. 'cause we do, we still go out for all kinds of reasons in the dark. Um, we went out for Christmas ships this year and did we do some fun things like that? We were out for light up the night with the lymphoma organization, a dragon boat lit up on the water while the pa, the walkers went across the bridge. It was, it was quite something quite moving.

K:

Beautiful. Oh, it sounds like such a great community. It's very attractive.

L:

It has a lot to offer. All ages. All ages. We've got a new Dragon Boat member that's just joining. Uh, she's in her 30s. Just turning 30. Um, you talked to our friend Danyel that you mentioned. And so, Danyel's young as well. It's a big, wide group of women. interesting to have friends. I've got friends that are in their 80s. I have friends that are in their 30s. I don't know how else I would have such a broad variety of women if it wasn't for this.

K:

Yeah. Well, I wanna talk a little bit about some lessons you've learned in your own personal story and what you would, the kinds of advice that you would give to a, a new breast cancer patient because of what you've been through. You've got 17 years of perspective and experience at this point. What do you tell folks when they're struggling?

L:

At the beginning? Well, I think it is a struggle at the beginning. I remember very easily, and I can just, in a second, can get there. Remember Dr. Love's giant book that she wrote on breast cancer? Where I was working, there was a bookstore right across the street. And so on my lunch, I would go over right after my diagnosis. I didn't have my prognosis yet, but I knew I had breast cancer. I went over to the bookstore on my lunch, and I would open that book, and I started to read it. And I couldn't get all the way through it because I started to get into details that I couldn't fathom. Having a mastectomy, having, losing my hair, I mean some of those things. I couldn't fathom it. And so I'd have to close the book and I'd go the next day. I'd start again at that same spot and move forward. I mean it's just you can only get so much information into your soul time. So all of it just seems like drinking out of a fire hose initially. And then finally you kind of wake up to something you know you've probably heard before. But now it's important to you, right? You, you don't really know what it is. You dismiss it and now it's, now it's here and it's real for you. Um, our walk through breast cancer is different for every woman. You know, some women that have a stage one, when they talk to a woman that's got breast cancer, you know, they make aplogies and excuses, and I'm sorry's that, "I'm sorry to talk about my stage one cancer. When you've got stage three." That's kind of a silly thing. I mean, I understand when women say that, but it's really silly because you find out over time that our treatment, may be very similar in some ways between our stage 1 and stage 3B. You may still need a mastectomy, I did need a mastectomy. Um, you may not need chemo, but I needed chemo. So, I mean, our treatment plans may be somewhat different. The women that I tend to have the most to say to are the women that are, have a similar diagnosis that I had and prognosis, which I did meet women that were stage 3B that were, ER, PR positive, HER2 positive, like I was. There happened to be a drug that was relatively new, Herceptin, that had only been available just in a few short years prior to my diagnosis that I was able to take. So, you take all of these elements, modern medicine, all of what it had to offer me, so mastectomy, full radiation, you know, as many radiation treatments as I had, so I had the full spectrum of 34 treatments, it's the max you can have of those, I had a double mastectomy, I had chemo for a year because I had Herceptin infusions for a year after my primary care or my primary, um, chemo. Then I took oral medication for the next 10 years after that to, um, several different ones that I took that finally were for tumor suppression. One of the things that I think was unique for me is I did everything that was offered to me and I did all the Eastern medicine as well. So I did Reiki. I did acupuncture. I Had a prayer circle that take, you know took care of me worldwide I had a prayer blanket that had been created for me during my treatment that I wore as I slept So, I mean I did everything Um, and probably would have picked up a rabbit's foot had there been one available. I mean, you're just doing everything you can to survive. And that's what I did all of those things and I kind of inched my way out of treatment, you know, did all the things.

Is it fun to go through treatment? It isn't. But I did meet women in that time of my life that had the same prognosis that chose not to do treatment. Chose not to do Herceptin. Chose not to do treatment. Chose not to do Herceptin because they were afraid of a side effect. And they ended up dying within a few months after we met. And so super sad. It. was a fear about something happening with her heart that stopped this one particular woman. My same age, my same prognosis, everything. And literally, in my, the way I look at it, kind of willed herself to death. She said, I'm out. I don't want this. I don't want to be in this treatment. It was too much for her. So, I think that. And she had a good, you know, she had family support. I don't know why her walk was so different than mine, um, but it was. And so I say to women, do the treatment that's suggested. Do all of it. In my 10 years of treatment? the times that I was dragon boating and super sore from all the work I was doing. My joints ached, my bones ached, from the treatment, you know, from the oral medications that I was taking. But I did it anyway. But I took it anyway. I soak in Epsom salts, I take aspirin or I take Tylenol or some other thing before I get on the water. After I get on the water. Amino acids before and after I work out because it reduces my muscle pain. You know, there's ways that you manage through this. Um, it does take some gurus, you know, to help you figure out how to do it. It's nice, but it's available online too. You know, breastcancer.org, I don't know if you're familiar with that organization.

K:

Yep. They have a podcast too.

L:

Yeah, and, and so I listened to that, especially late at night when everybody was in bed. And I had nobody to talk to and I would wake up with that fear or that new, that kind of question that I had. Um, You know, all kinds of questions that come up about treatment. Um, how are you gonna feel? Nausea, can I work all, you know? What about, uh, short-term disability? Those kinds of questions can be asked answered. looking at breastcancer.org, is this a great site for that? So in the middle of the night, I would get out there and search for something and get an answer. It was a great forum for that reason, you know, if women hadn't got out there before me and been willing to put their life stories out on. That location or be in a podcast like this. How are we going to get this information?

K: Yeah. Did you ever finish Dr. Love's book?

L: I did.

K:

It's a big one.

L

It's a big one. It's a big one. I finally bought my own copy and had it. You know, it's, uh, it's one of those things. A hard copy is something that's interesting because all of it's available to us online today. So you don't really need a hard copy of anything, really. Uh, but I did have a hard copy and I had that with me and visible for a while. And then I got rid of it because it was some kind of a reminder that I didn't love. But I'll tell you, want to know how I, what really saved my life? I believe this Well, so when I had chemo, I had been reading and studying about, I don't know if you're familiar with this science, this Japanese writer that did the science about what happens to water...

K:

Yeah. Negative ions.

L:

Yeah, negative or positive. So I've been doing a lot of reading about that and I thought to myself, okay, I've got all these chemicals that are in this chemo bag that I'm going to be infused with. And a lot of women are saying, I don't, you know, that's a chemical. That's, uh, that's death. That's the devil. It's called all kinds of things. And, you know, it's going to get into my body and they have all these negatives about that chemo. So what I did is I changed the structure of what was there by writing on the outside of the bag. And I wrote love on the outside of that chemo bag every time I had an infusion. So instead of having an infusion of something that could kill me, even though that was the point where I was to kill the cancer cells, I was being infused with love. And. I think my mindset around that infusion really mattered. I had a friend that was in treatment, in recurrence, desperate and she was in her late stage and it was funny, great girl, 34 years old, very young, not going to survive, right? But there she is, struggling to do it. And she was still doing treatments and could do her, even do, take her chemo bag off site and do it. She was something else. But anyway, I told her about that. I said, you need to put love on there. So whatever's important, you put it on there. Whatever's important. She goes, well, what kind of stuff are you talking about? I said, important shit. I'm talking about the important stuff. Whatever's important to you. So that's what she had written on her bag was "important shit."

K:

Yeah. Oh, the beliefs are so important. I believe that with all my heart. Yeah. And so are the positive wishes and thoughts and prayers.

L:

Oh, my gosh, all of that. I never discount it. You know, um, I had cards that would show up at my, in my inbox, you know, from home, from third graders, from some elementary school that I didn't, never met, didn't know them, and they had written me a card. So there was a lot that goes on, being open to it. Open to any kind of treatment, open to any kind of positive feedback that you can take it.

K:

it reminds me of a story I always tell about my acupuncturist when I first started having the symptom of bloody nipple discharge, which is a common symptom for breast cancer. And they couldn't find any breast cancer when they went in to do the biopsy. I had no diagnosis, but I had still this bloody nipple discharge. And of course, The conventional medicine oncologists were freaking out and like, what do we do? We have to do a big excisional biopsy, blah, blah, blah. But my acupuncturist wasn't freaking out at all. He said, you know what that discharge means is that your body is cleaning out those dead cancer cells that you are killing because you're so powerful. You're so effective at getting rid of this cancer. And he was saying this with a smile on his face. He was relaxed. He wasn't in a panic. And it's such a contrast. Both are true, right? They're. They're both true, because you do need to be worried. You do need to be vigilant and keep doing the biopsies until you find it. But you also need to be proud of yourself and the fact that your body is a cancer killing machine.

L:

Yes. Yes. And then you also stay vigilant. You know, that's such a key piece of that. I had to chase my cancer down too. Um, didn't, wasn't, didn't show up, didn't show up in my breast. I went in for a regular breast cancer, um, mammogram and they saw something, it was interesting, saw something reactive. It was sent off to an expert. He says, no, just, it's just a lymph node. So it discounted what it was that I had, right, well, what they had seen. So said it was reactive. Set it, set it aside. Six months later, I was at my physician again, my gynecologist at that time, and said, said it to her. Hey, what about this? She goes, we need to go back. Let's go back and have it done again. Second time, still nothing. I found it myself on my ribcage, on my ribcage. There was a lump that I had about three ribs down that I happened to find in the middle of the night one night, and it And that's where it ended up sitting down and I, cause I knew that something was up and found it there and that's what ended up being, um, biopsied way down here, down my ribs. And then they, they were able to then find it because they couldn't find it. It was actually sat in the middle of my chest on my sternum, which is how it got attached to my pectoral muscle. um, and which is why I had to have the whole thing removed. And then others that, find it themselves or that mammogram that really does work. So absolutely need to have the mammograms even though our two stories were always quite a chase.

K:

Yep. Absolutely. Yep. They're both true. Anything else that you had wanted to come to share?

L: I think that I'm excited about, um, women and men, um, that might come join us with Rose City Rockets. We need you, right? We need your enthusiasm and your, your good vibes and bring them on down there. We can take care of you no matter if you're an athlete, a retired athlete, want to be an athlete. we've got a place for you.

K: Oh, that's great. I love the openness of it. I think part of what intimidates me about athletics is that it's like stepping into that competitive space can be really intimidating. So thank you for making it a welcoming place for people.

L:

You're welcome. You're so welcome. That's what it takes.

K:

I will hope to see you on the river soon or on the lake, maybe when I'm paddling by in my kayak.

L:

Yeah. I'd love to see you out there and tell, we'd love to hear more about your walking group too. Sounds like a great time.

K: Okay. Yeah. All right.

L: Great. Thank you. Thanks for your listeners too.

My friend Danyel takes photos of breast cancer survivors in her studio on Hillsboro Oregon. In this episode she describes what that's been like, and she also talks about her recent diagnosis with stage four breast cancer.

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The facebook group that Danyel and I connect on is called Oregon Flatties

The Photo experience that we referred to is Warrior Women Portraits, in Hillsboro Oregon.

Transcript:

Today's guest is my dear friend, Danyel Rogers. Danyel lives just one town away from me, and she is the founder of Warrior Women Portraits, and she's kind of a local celebrity for it. She was diagnosed with invasive ductal cancer in 2022, stage one, and she had four rounds of chemo after that diagnosis. And in July of 2024, just recently, she was re diagnosed again with stage four, and she has triple negative breast cancer, which is going to be the main topic of our discussion for the second half of today's conversation. Welcome, Danyel.

D: Thank you so much for having me.

K: I wanted to ask you, first off, it was kind of a perfect setup because last week's guest, Brenda, mentioned how much she loved her experience in your studio, in your photography studio. And so first off, I wanted to ask how you were inspired to create your project, Warrior Women Portraits. Absolutely. I knew in the very beginning when I was diagnosed, even while I was going through treatment, I wanted to give back in the breast cancer world and really just kind of lift them up. Um, I knew it needed to be something unique, something that other photographers weren't actually, offering to the women that have been diagnosed with cancer. I just wanted something really powerful, not necessarily pretty, but powerful. Because we're, we're always, you know, when we get this diagnosis, we're drafted to war, you know, we don't have a say in it. It's not like, you know, we're just getting reconstruction just for the fun of it. And so, you know, we just have no choice other than to fight. To just do what we can to stay on this, this earth as long as we can. And I wanted the experience to kind of mimic that. As I was watching, fellow flatties at the, flat retreat that was in, that April. I really noticed the, the impact that a group of women had that just knew and understood. And so that's when I knew it needed to be a group session, um, so that they could lean on each other and just have fun and connect. And the more I thought about this, the more it just kind of, it just excited me because It could be people that are 20 years out that feel so much strength that they've beat this and, you know, they've really connected to other women that just need that extra, you know, pick me up of you are strong, you are, you know, resilient, and I love showcasing that. So I really wanted it to be, regardless of what stage type, you could be stage zero. I, and I don't even care if it's a breast cancer diagnosis, cancer's cancer in my opinion, then I just get to, you know, watch it all happen and unfold.

K: Yeah. Yeah, I remember, I was one of your first victims and was so honored, so honored for it. And I was, I'm not a girly girl. I don't wear makeup except for a little lipstick now and then. And so I was just like, when I walked in, I was like, Oh, this is going to involve so much more than I realized. There's, there's makeup, there's weaponry. You have a whole arsenal. You have lots of jewelry. Uh, it was a really cool kind of almost like a playful activity that reminded me of, of being a child again, but in a more strong, strengthening kind of way. So, and, and I love that you're open to people who don't identify with the warrior image because there's a lot of survivors that don't, like me, who are pacifists maybe and don't want to take up the, the sword or….

D:

Yes, that's, and that was my big thing too, like, aside from the name being Warrior Women, if Goddess, or whatever, whatever, like, just a beautiful human being, like, it doesn't have to have a label either. Um, and I do, like, you do not have to pick up a weapon of any nature, like, it is there for you. Um, but I want to make sure that. Women understand that you can go as grungy or as minimal like you, or just, you know, do more ethereal kind of looks. And that's all part of the journey in the studio. And we, we, we just have fun and go in and out of what, um, our visions may look like idea boards and inspiration boards for different poses, but also for different facial makeup and hair and all the different things.

K:

So we don't have to, when we show up in your studio, we don't have to have an idea of what we want. Maybe we have a color idea or a theme idea, but no one has to arrive with lots of ideas that they get They get inspired by looking at your idea boards and vision boards coming off of off of your screen.

D: And I'm a little, I mean, it's a little for me too because, know, chemo brain is a thing and trying to be like, Oh yeah, I wanted to do that pose, but I forgot. Um, but it's been honestly really helpful for everybody in the studio from the model to me to the person that is, waiting their turn because the person waiting their turn can take a look at some of these poses and like, "Oh, we're doing this staff." And so it kind of pulls the other person that isn't being photographed into the into the experience, so to speak. And that allows me to be able to stay behind the camera getting the shot and things like that. So it's really cool because it makes the experience like we're all in it together. So like the next lady, when she's done, you know, we flip it and like, Oh, I wanted to do that, that so and so did and, you know, and then it just becomes really exciting and just kind of fluid, really.

K: Oh, yeah. And it's nice. You know, when you're posing for a camera, it's super awkward socially. But if you have your own cheering section and in the margins, you know, like it makes it so much more relaxing and fun. fun and playful. And then you can really get into it and start to kind of ad lib in a way that you wouldn't if you didn't have someone kind of laughing with you and in the bleachers.

D: The emotions are going to be there. You're going to be like, you're going to feel silly, right? Like, if I'm having you, like, scream or growl, like, that's not your normal, like, persona, right? Um, but it, I think it works. It's amazing. But then we get the laughter right after. To just be like, Oh my gosh, look at that natural smile you captured. Um, so there's all that, the component of getting the grungy and then usually there's the funny after as well. So, um, you get it all. Heh heh heh.

K:

You have a lot of furs and I really loved my portrait that came back with the furs. Um, because it made me feel a little more connected to the earth, the basic elements. I feel like with this cancer diagnosis, I became more in touch with my mortality in a way that I was okay with. Like I was admitting that I, I came from the earth and I'm going to return to the earth. And so it's weird. Like I used to wear a lot of. I have purples and turquoises in my wardrobe, and these days, ever since I was diagnosed, I just want the earth tones. And I think it's because I do relate so much to that sense of mortality, that healthy sense of mortality, that everything passes and we have to let go. And the earth is just a reminder of that. So I really love that you had some of those really earthy costumes too.

D: And I'm, I'm making even more. You should see our garage right now. I went and got a bunch of realistic looking flowers—a lot to like to put in there, but they're really even feel real. I want to make some crowns, right? Of like the flowers and doing more of like an ethereal...

K:

Like a fairy theme?

D:

Yeah, I don't know, fairy doesn't even seem to be, something that is more, more grounded into wanting more nature versus, um, weapon.

K: Mm hmm. Yeah, and the weapons are incredible. Like your, your husband made a bow that looks like a really rustic bow and it actually pulls, and he made it out of…?

D: It's just PVC pipe, and he's been enjoying that kind of stuff because like he did the first bow, you know, just trying it out and then he tried a different way and it didn't work as well. So then he went back and did another bow. And the one that you have recently seen in the studio, he put the markings like more of like, um, Viking markings on the bow. And he was so, um, smart and thinking about what symbols actually were to be carved on there. Um, like if, if a woman did actually look up those symbols, it would be like bravery and strength and things like that. So even though it's really the small details of things like that, where we don't want, um, to make a weapon and then have the symbol be something really inappropriate. So we do those things as well. And, uh, made a scale mail, like armor thing that he made with a bunch of ring. I don't know how he did it, but it is beautiful and heavy and gorgeous.

K:

Ooh, I want to try that one on. I'm going, I'm going into the studio for my second, second portrait session here pretty soon, so I get to try some of these lovely things on.

D:

The things, I know. And I have to keep adding new things because it keeps me inspired well. Keeps me, keeps me like thinking outside the box. And um So, yeah, I'm super excited. K:

Well, I wanted to ask you some of your more precious memories from the studio. If you have any kind of emotional moments or, or your first client that you had, uh, coming into the studio, do you have any special memories that you can share?

D: You know, they're all really special. It's really amazing to see how the women act when they first come in to when they leave, and that's just all of the women to be honest, because they're so excited. They've gone through the process. Um, they haven't even seen their images yet, but they're so like in it. But the ones that don't think they're going to get into it, and then they do, those are the ones that are like, Oh my gosh, this is so funny because they're, they're really timid and you know, and it's, it's a strength, right? So if someone is just kind of mousy, you have to kind of pull the mousiness out and, and, you know, give them a little more oomph behind their image. Um. And you can see in the roll of, I say the roll of film, right? The SD card as they go through their session, you can see their expressions become more natural. It's really magical to watch. Um. And then there's the ones that are just like in it, just they're like screaming and they're growling and, and those are fun too. I actually have to have, sometimes, uh, I've let all the people know there's a bunch of businesses up where my studio is. So I've had to warn them, we're going to be doing these, these sessions, and you might hear some screaming or grunting, but I promise you, I promise you, no one is being injured. Then we do a Zoom call and they get to see the images. And watching their face is probably my all time favorite because the excitement, the It's, I think because the women have a persona, they see themselves differently, you know, they don't see themselves as a mom or a friend or a wife, you know, they, you see the strength of just them as a human. I know it's really hard for us women, or just, you know, people in general, to see a picture of themselves and not try and pick it apart. Um, but I think in the, this scenario, they're a persona of themselves. Um, kind of like, you know, Beyonce would be like to a Sasha Fierce when she goes on stage, right? You have this persona. K: Yeah. That reminds me of a story you told me of a mother who talked about, um, her vision for her, her print that she was going to have printed of her photo.

D: I think you're referring to when she was like explaining how empowering this image would be on a wall of a family with young children and You know, women aren't meant to be in that big, strong mentality you know, we're softer, we're more gentle, um, but we could do really hard things. And, um, I think it's really empowering for not just the person, but their family, you know, their, their partner to see what they, they see of their partner, right? And they don't necessarily know how to explain that to them, that they see the strength. And now they have an image to be like, see, I've been telling you, you're really strong. But this image really kind of like encompasses it. But then if you have young children, you know, what is that saying to a young little girl, right, she can be strong. She can, she can do really hard things. And my mom did hard things that I can do hard things and, um, giving them permission to feel strong. then you have the other side of little boys, you know, who are able to see their mom in a, in a way that society may not necessarily show him, show them. and so I think it's, it. The imagery that comes out of it is so much bigger than me. So much bigger than the person that is being photographed almost. That, is really the legacy that I'm hoping to leave behind, like, I had a client, um, her husband just printed a whole gallery for her walls and, and gifted it to her for Valentine's Day and, the fact that they like their images that much to put so many on their wall for them to view on a daily basis. So, it's pretty awesome and yes, it is definitely my legacy. In my first phase of life of my legacy was raising my two kids and my stepdaughter, and now it's this, these warrior sessions. Facing mortality is a little bit easier to know that I'm affecting not just these women, but their families, their young kids, their friends, you know, a lot of times their friends will see these images and get really emotional because they too, it's like seeing an image of what they would actually, that they didn't realize was something that they needed to have and that of their best friend, so yeah. K: Yeah. Speaking of family, I have met one of your daughters down in San Francisco. Your daughter Brianna came and helped you transport your entire studio into a hotel room when there were a hundred of us flatties assembling just over a year ago for international flat day. And she was an amazing assistant to you as you kicked out like, like so many little mini a studio sessions, one after another, after another, like how many, like 25 women got their photos taken? D: it ended up being 21 in the end.

K: Wow.

D: 21 over 2 days. Now normally I do 2 warriors a day. So, and that was, you know, so yeah. I definitely needed her help, her assistance. And she was so, like, it was such a proud mom moment. Um, watching her interact with all these women that I call friends. And, um, Um, and just really seeing her see the power in these women, um, cause I could really see it like she was, she was helping with makeup and, you know, kind of helping things move along so that we could get, you know, cause I wasn't going to have a lot of time to help them with makeup or hair or whatnot. And it was just, it was remarkable to see her interact with people and people coming up to me and telling me how amazing she was. you know, those are, those are words that a mom always wants to

K: Yeah. Oh, and she was there every step of the way all through our whole like parade and walking across the Golden Gate Bridge and celebrating afterwards. She was right there with you and supporting you. I just love that you have that memory of that whole two days, three days spent with her so intimately partnering with you on your life's passion.

D: And it was, it was really interesting. Um, flat day is actually on my other daughter's birthday. Um, so it was the day that we walked across the Golden Gate Bridge with my daughter Brianna was very emotional because it too was also my, my youngest daughter's birthday, but as we were walking past, and so it was just like all these emotions, but positive and like, God, that was a magical wasn't it? That Golden Gate Bridge, I just had tears running down my eyes and I'm not like a big crier but when, people are driving by honking their horns in support and in solidarity to us as we walk across. It was just, sorry, I know I digress but it was such a magical moment.

K: No, it was. There'll be never be anything else like it. I think it was also, I think for both of us, you know, some of our first memories of solidarity and the flat community. D: Yes, amazing. And then knowing that I shared it with my daughter, um, the only thing that could have made it any better was having my other one next to me as well, which she was in memory.

K: Well I want to transition now and talk a little bit about your special diagnosis? I've talked about triple negative and interviewed a couple other gals that have had triple negative diagnoses, and it feels so much different, but it's not always different if you capture all of the cancer in surgery in the first place. It doesn't have to be, you know, such a scary diagnosis, but in your case. Um, unlike Marquita, my first guest that talked about triple negative, in your case, all the cancer cells were not captured and you did end up having not just recurrence, but serious stage four cancer cells traveling throughout your body.

K: So what do you want people to know about your experience of triple negative?

D: I try not to be super scary, but it, it, it is. Lot of, um, hormone positive, cancer cells are grade one, which means they don't replicate super fast. Um, triple negative is almost always grade three, which means it duplicates at a rapid phase. . And that's and that's where the big problem lies, right? On top of not knowing what is feeding it. And so you just kind of like, you're chucking darts at a, at a dartboard hoping something sticks. So I tried really hard to go aggressive in the very beginning, when I was stage one. and because knowing triple negative does have, supercells and, um, so I went aggressive, you know, my doctors had offered a lumpectomy with some radiation and I was like, no, I want a double mastectomy, no reconstruction, let's get chemo and like, I was like, this is just, we're doing all the things you know, we're fighting it and you know, we named my cancer Toby because I didn't want it to be, like me, who I am. Um, so that's kind of a tip that I highly recommend naming your cancer or somehow like making it less you.

K:

Right. Separating it.

D: That way, you have something to fight, right? You're not fighting yourself, you're fighting, you know, the cancer itself. Um, but anyhow, in 20, at the very end of 2023, I was getting really kind of raspy in my voice. And one of the components of going, becoming metastatic is a lot of times it'll go in your, um, Help me out, Kathleen.

K:

Oh, your thyroid?

D: Thyroid, thyroid, thank you. Um, which, if it goes to your thyroid, a lot of change your voice or things like that because it's around your esophagus. So we did a bunch of testing. I mean, we went and we did an ultrasound of my thyroid. I saw two different ENTs, they scoped my nose, and then all the way down to my vocal cords.

K: Wow.

D:

And then at the beginning of 2024, my oncologist was like, let's just do a big scan, what we're working with, and if there's anything, we'll, we'll tackle it. So we did an MRI and CT, um, of pretty much my chest wall, abdomen. And then head to toe bone scan. Everything went fine in February. And there was one spot on my rib that looked, had been there all along, um, looked like a past injury of that nature. Um, it was stable. But my doctor was like in six months, let's re-scan just to make sure there's been no change. And, uh, went in for my three month follow up. Everything was fine. Then I, then I was at the six month point, time to do all the scans and, um, that's when we found out that I was, I had become metastatic and, um, so all the lymph nodes around my neck now were consumed, . So I was sounding like a chain smoker at this point, um, and then it was also in both of my lungs. So, at that point I became metastatic. Going into that scan, I had the most overwhelming feeling of dread going in and all the other scans. I never really felt that way. And then most recently, Got more scans and now it's also in my liver and a pretty significant, um, one in my brain that I just found out a couple of days ago. Yay. Um, I always find it's, I either laugh or I cry. laughter is kind of a mask to be honest, like, there's just all this stuff happening, you know, your worst fears.

K: It seems like you're on a fast track compared to other stage four patients that have more of a long term time to get used to things and ease into their meds and, but you're, it's very different for you. Talk about your meds now.

D:

Originally in 2022, I did taxotere. That was four rounds of taxotere and then neulasta shots the day after, um, to improve white blood cell count. and then that was just my, that was my treatment besides my double mastectomy, the first go around

K: A monotherapy the first time—just one form of chemo?

D: Yeah, the only reason why they did just the one was because there was no cancer in the lymph node. And so we were pretty confident that it had not gone lymphatic and, um, was pretty contained, but we still did , taxotere. And so when I became metastatic, we did taxol, um, And I wanted to know, like, on average, what am I looking at? Now, I know this is an average. I know this is not set in stone, but it kind of gives me an idea of, on average, Her patients. What does she see? And she had said that the first round of taxol, um, this go around was probably last six to eight months… and I got to five. So now we're switching. I'm going to trodelvie. Um, so I'm, I'm really curious to see how I, how Toby responds. You know, it's a longer day, it's a longer infusion, um, so once you have progression, um, that's when they, either they, they stop you on your line of treatment. If it stops working with the tumor or your quality of life is no longer there, like you just tap out. There is no cure at this point. This is more of just fighting as much as I can for as long as I can to give me as much life as I can. Um, and that, that is a big component to wrap your head around. And so, you know, we're looking at my day to day life much differently, you know, , even just over the, this past weekend, we were going to go to the light festival. We had the snowstorm and I was laying, sitting on the couch going, Do I really want to go? Nobody's meeting me there. I could totally skip it. No one would even know. And then I'm like, no, I don't know if I'm going to have the opportunity to do this again. So let's do it. And it was, it was a fun day, but that's kind of where I'm living is trying to put at least something into it that I can make a memory for. Um, so basically 2025, my motto, my resolution, whatever you want to call it, is just living intentionally. And so that's kind of how I'm moving forward. You know, every month I'm pre determining what I want to do for the month. There's a lot less of, "oh, I'll do it next time." Because I don't know if next time is actually an option. So that makes it a little more exciting as well to know that, like, you know, I can share that with family and friends and stuff like that, including you. So, you just have to take it day to time and stop looking at the past and not look too far in the future so that you're, you know, just kind of living in the present. K: And I know that you recently quit your other main job, your full time job. Are your family members also able to carve out some extra time from their livelihoods right now?

D: Yeah, yeah. It's really beneficial. My, my parents are retired so they can kind of help wherever need be. Um, Mike works from home. He has a job that he'll be working, for the next few months, but he's working from home. So, the infusions are like 20 minutes away. So if we just have a doctor's appointment and he's very can come with me. Um, And so it's, yeah, so it's been kind of nice to just be able to have some time with all of them and then, you know, we try and plan stuff on the evenings and weekends. Weekends are a little bit easier for, you know, the masses that are working. But yeah, that's a good thing about social media and texts and things like that. You can stay pretty connected amongst your, your peoples pretty easily, um, when you need it.

K: Yes, to tell people exactly what's going on with your treatment. It is so reassuring as one of your friends to not be in the dark, but to be seeing your faces and seeing all the emotions on your faces. So thank you for that. Yeah. Oh, how did you and Mike come up with that as a plan?

D:

I don't want to say laziness, but like, just, you know, uh, we just have so many people that really care about us and want updates and being a photographer and, you know, it was just like, we need to update everybody. I felt it really important to just be able to tell it once, um, because of the fact that I am on such a short timeframe. I didn't want to have to constantly be updating, you know, this pocket of friends, this pocket of friends, this family member.

K:

Oh, it's exhausting!

D: It's just this on YouTube, post it on social. Anybody can share it so it's just been really beneficial for me to and Mike too, just to share it once and also documenting, K: I wanted to ask you Before we go, about your plans for your celebration of life, because I love that you're being so intentional about planning for your last days, and just so brave. I'm so proud of you in that way. Can you share a little bit about what you have planned?

D: Yeah, I, I'm, So before I was even diagnosed originally. Um, I, I specifically remember going through this. I think we were going to the beach and Mike and I were, you know, just. Talking and I know I got into this really weird space of thinking about my death again before I even knew I had breast cancer and it was just like had this overwhelming panic feeling that no one would show up to my funeral. Like, I'm like, well, what if they're busy? And what if they like, you know, and they're, and, and I got like really emotional, and then I got my cancer diagnosis and we were just all in the thick of it. And, um, even during my first active treatment rounds, I really wasn't thinking too much about mean, I was thinking a little bit more about mortality, but I felt like there was an end—there was an end to my treatment. But when I became metastatic, um, mortality became a very big reality. Like, a very big reality. Feel like I have the benefit of knowing that I'm going to die sooner than later. And a celebration of life before I'm gone sounds so magical for myself, for the people that have those experiences with me. Being able to just share one last time how much that day meant or whatever comes up, um, so I feel like it. A celebration of life before you're dead is really beneficial for you and the family that you're leaving behind because once you are gone, you know, all these people can lean on each other. Um, and maybe, maybe even, you know, after the fact, some closure that maybe needed something you know, why not get closure before they're gone? I don't know what that looks like. I'm a little panicked that I'm fast tracking to that end. Um, just with my most recent scans. It's hard not to think about but, uh, I have a great support system and, um, the intentional living is really helping, because I'm not wasting my final days.

K: Yeah, when I've thought about your plan to have the end of life celebration before you die, I think it's also really great for your, your partner, for Mike, because when you witness a funeral and that person is then alone, they're wishing that you could have seen. How loved and valued you were and and the funeral.

They get to see it, but they're always wishing that you could have seen it. So I love that, that you at least have the power and the control over when you're celebrating your life. And I love that we will be able to dress up with abandon and makeup and do our hair up because you're the, the makeup and dress up queen, right? And just be playful with you and shower you with bubbles and love and hugs and so that you know just how special you are.

D: that's definitely been a really hard thing because my, I, I take care of people like that is just, I'm, I'm always mom, you know, and, um, having people take care of me has been kind of a, a new thing that I've had to get used to. Um, but it's, been good to just see all the people that have stepped up for me and in small ways and in big ways. And, um, I've definitely felt very, very loved. Um, so yeah. K: Well, if you need someone to help you plan that future event so that you can stay in the present, then just lean on me and ask me to, to do that. D: I picture this as like Burning Man meets, you know, just, just a fun day of celebrating and then, you know, also having just all my people around. Uh, I kind of, I've had a few, um. gatherings. I had a 50th birthday party in December and then when I was first diagnosed, we rented a big lake house and had my family and friends that were really close when I was first diagnosed. All kind of stay under one or one roof and we had the weekend and you know, had fires outside and we, you know, did all kinds of things. And my happy place was actually Standing on top of the landing, looking down at my family and friends, just being together and Coexisting and just watching the magic happen is so beautiful to me to watch. And, you know, even this, um, earlier this year I went to, um, Depo Bay and I had, um, Jenn Boom and, um, my best friend, who is Ani, and we all met for, um, the King Tides, and Brianna met us too, so it was like all this, but it was like taking, you know, my best friend and then one of my flatties, and you're like, okay, well, will they, will they commingle, right? But like the whole time I probably took like six different pictures and six different times that they were just in this conversation, like just chatting, chatting together without me. It was so beautiful to watch. Like I saw him in the kitchen having munchies and I was just like… I don't know what that is, but that's my happy place is just watching people from all avenues of my life to just kind of connect and, uh, it's, it, yeah, it's just, it's interesting the things that you find heartfelt. I'm soaking them all in. K:

I'm so honored that you decided to come on and be interviewed today in this super, super vulnerable time of your life and so, so grateful to be in this with you. Um, I want others to know about how to sign up, especially those in the Northwest, but even people who are willing to fly in, I can, I can help arrange accommodations if necessary. Um, so I know that your first available studio appointments are the 17th and 18th of May, and then you've got, um, some on the 7th and 8th of June, I think?

D: Yep. So everything that is available, um, for my schedule is out on WarriorWomenPortraits. com. There is some other videos of women that I have photographed that I've interviewed as well on there, Just find whatever day works best for you if you want to, um, there is a minimal space in the studio, so I try and keep it all the people that are either being photographed or, um, my one person that I tend to have to do behind the scenes or assistant like you do every once in a while. So I try and, um, not allow guests to bring friends just because we are on limited space you know, I'll be your friend for the day. And you might make some new ones along the way. But yeah, I take care of everybody in the studio. They just literally need to show up. I have not had anybody say that they have regretted making the time to do it. So it's just a day of dress up and, um, it is 90 to sign up—really just kind of to help cover a lot of the makeup costs and things like that. And that includes one image. So, um, basically for 90, you get the full day experience and one image to take away from the session. I wanted to make sure that this was in a reasonable price point that if people didn't have the funds to do any more than just one image, they at least walked away with one image. That really, really was important to me.

K: Oh, thanks Danyel.

D: Of course. Thank you so much for having me. I appreciate you

K:

I'll see you soon.

This and next week I'll be interviewing some friends close to home. I live in Oregon Wine Country, and there are a few breast cancer survivors who live in my part of the woods that I've gotten close to over the past two years. Brenda is one. We talk just about every week and see each other monthly. She's been through so much, and she keeps going, relying mostly on her own strength. I was thrilled to be able to hand her the mic, as we sat in my living room together to record this episode.

Transcript:

Today's my first in person interview. I have my friend Brenda Huff with me. She's a neighbor and my sidekick that I invite to all kinds of local events. We hang out together in person a lot and I thought I would have her here to my house for an interview for the podcast. And Brenda is a resident of Forest Grove, the town that's closest to where I live. And she is a former stay at home mom. Raising her kids, and she's also right now in recovery from a number of injuries and from homelessness. So she's had a bit of a rough time recently, but she's doing amazingly in recovering.

And so I, I really wanted to invite her to tell her story. She's a fellow flattie. She had stage three breast cancer, went straight to flat from a double mastectomy and, went through treatment with chemo. And did you have radiation? I can't remember. Yeah, you had radiation too. So, we live in the same community, have a lot of the same friends, and we're part of the same flat community called West Valley Flatties.

And so Brenda and I see each other a lot. And I wanted to ask her, in particular, about a part of her story that involves the early days of her being flat and being on chemo. And I think this is an important perspective because I tend to have a lot of folks on later in their journeys when they're very used to their new bodies and have, you know, adapted and are celebrating their new bodies.

But I think a lot of us, and Brenda included, have had a rough start at the beginning of kind of starting to accept the flatness and the change. And so I wanted to ask you first, Brenda, how did you decide to go flat?

B:

Um, I wasn't sure about putting implants in there if they would fail me down the road. My surgeon had said something about it and he had asked me several times if I wanted the implants and I said no. I said I think I'll just hold off and I'll just be flat.

K:

Okay, so it was kind of just your own intuition, your own feeling about what you needed. And did you have any fears about what you would look like when you first saw yourself in the mirror after that surgery?

B:

Yeah, I did. It was hard. It was really hard. But, um, sometimes I'll wear the prosthetics and then sometimes not, you know, but it's hard to go flat just for myself. And some, some of my friends that are in the flatties just go flat, you know, and they're fine with it. But me, I just still hesitant of it. So I just wear my fake ones.

K:

Yeah, no, that's that's great. I think for me, I have a fake one too because I have a small Goldilocks and then I have a little fake prosthetic that it kind of sticks on to my skin and I can wear it when I'm feeling uncomfortable and I feel like I wear it in the times when I'm feeling like all eyes are on me. Um, or maybe some eyes that I don't really know or trust maybe on me. But, um, yeah, I think it's, it's great to have that freedom to be like in your body and not putting the extra stuff on sometimes. And then on the days when you need to, then putting the extra stuff, the extra prosthetic on. I think that's awesome. And I, I think we should all feel the freedom to do that.

B:

But then I have a little joke about that too, about wearing the prosthetics. Um, mine are just made of cotton, but I've gotten out to, outside of the house to get ready to go somewhere. And I'm walking down the street and I look down and one of my prosthetics is much lower than the other one and so it's like what do you do you do you turn around and pray nobody's looking because you're playing with your boobs, you know!

K:

Oh My goodness, yeah, so I have a story about that: this Christmas I was the one that hosted here at my home and I was running around and getting a little sweaty wearing my prosthetic and it's a stick on and I don't wear a bra with it and I had never worn it when I was getting really sweaty and running around like that and sat down to eat and about like 10 bites into my meal, it fell off into my lap and like, you know, I'm looking around the table to see if anyone's noticed.

Hopefully they didn't notice anything, right? I don't think they did, but oh my goodness. That's good. One of the pitfalls of wearing a prosthetic.

B:

Very much so. We all have it when we are cancer survivors like this. So, yeah. Yeah. I mean, unless you have implants. that are, you know, inside your skin, you don't have to worry so much, but even then I think there's some lopsidedness, some asymmetry that happens for everyone. So for everyone, even people that without cancer have one breast that is smaller than the other.

K:

I've heard that. Yeah. That the majority of women have a breast. That's a little different or pointed in the wrong direction or whatever. So it's not just us, you know, it's other women out there too. Absolutely. Well, when I first met you, you shared a really poignant. Tear jerking story with me that's always kind of remained with me and um, I'm so honored that you trusted me with that story and you said that you would also trust the audience of the podcast with that, that hard story. And so I wondered if you would share that story here on the podcast.

B:

Yes, um, that was a difficult time. seen the points in this, the staring and stuff like that, but never what I experienced. I lived in Tualatin and I went into Fred Meyers to do some grocery shopping and I could overhear a lady talking to her husband on the lines of, please do not say anything to that lady.

And, um, her husband never acknowledged her and, and she just kept saying, please don't do this. Please don't embarrass me. Please don't embarrass that woman. Please just let her be, you know. And he came up to me and he said, um, and I can't remember word for word what it is, but he was really rude to the point where, um, he says, women have hair.

Why don't you have hair? You look like a male. And that really hit. It hit home pretty good. Um, that lady was very upset. She tried to apologize up one side, down the other, and there was no going back from that. Um, she left her husband in that store and walked out without him.

K:

Good. I'm glad that she did that.

B:

It's very hard because at that point I had no breasts. I had no hair. Yeah, I look like a man. I mean, it's gotten better, but You know, and a lot of the men were the ones that would point and stare, let alone the little kids. But I taught my kids, you don't point and stare. You know, but a lot of parents don't teach them that. And that's the hard part in here.

K:

Absolutely. Yeah. Thank you for sharing that. I know at that time you were really raw. You were still going through the treatment. You had no choice but to do your own grocery shopping. And so there wasn't, it wasn't like you could, you know, You know, put a prosthetic on or put a wig on, and that point you were struggling and, and struggling financially too, I imagine.

B:

Cancer is very expensive. I mean really it is because not a lot of the free wigs are out there and not a lot of the free prosthetic is out there. Um, I was very thankful for you because you were able to give me the swimmer prosthetics and those were fun and I really appreciate that very much because I really struggled with that too to even go to a pool because I have no breasts.

So that was the hard part and a lot of bathing suits require breasts in order to look presentable or whatever, but, and I still struggle with it, but I'm thankful that I got help with you and then I found out other communities and stuff out there that will help with breasts, you know, just the prosthetic ones, but yeah.

K:

So I remember when you and I first met the first day that we met and we'd been in touch a lot through Facebook and email and things like that prior because we were meeting because of the Komen walk in Portland at the zoo and you brought your own team and your team was really good at communicating with me as kind of the head of our larger team and a support group for yourself.

And you guys had made beautiful t shirts, um, I can't remember what they said, but something about supporting you, Brenda. And, um, I was just, I loved your energy and you were all dressed up in tutus and you matched and, I'll never forget, you were one of the first women I've ever seen take your shirt off in one of those breast cancer walks for the first time, and you know, experienced that novelty of sharing that intimate part of your body with the other breast cancer survivors around you.

Do you remember what that felt like on that day?

B:

It was an emotional day , you know, I mean all around it was emotional. I got to meet new people and then I just felt like I'm here with them. I might as well experience it with them and that was a tearjerker but it felt good. It felt good to be around those women that look like me, feel like me, you know.

It was good.

K:

Absolutely. I relate to that. I think I remember you saying, what the heck? And just taking your shirt off because you saw so many of us that had done so, that were a part of our team as the Oregon Flatties, I guess is what the name of our team or Stand Tall AFC was the sponsor. So you were joining us because you, you saw the solidarity already and you wanted to be a part of that solidarity.

B:

Yes, that's what it was. I wanted to be one of you. You know what I mean? So yeah, it felt good. I was hesitant, but it felt really good. I thought what the heck why not? Let's join them, you know, yeah, and you seemed pretty exhilarated afterwards. So it seemed like it was a good experience It was very good day.

Very good experience for me Um being with the flatties very good I mean like you and I have a close relationship and there's a few other women that I do talk to Um, but not the closeness that you and I have You know, and I just think if somebody else is going through the same thing as we are that you need to get hooked up with the flatties.

K:

Yeah, it's been really amazing that first day that I met you.There were a dozen of us that had our shirts off and with power.

There was a lot of power that day This last October it was a little quieter There was a kind of a rival event in Bend a lot of the flatties were doing on Floating down the Deschutes River activity and so it was It's just you and I with our shirts off this last October and that felt pretty different.

Tell me what you remember about that experience. Just being the two of us.

B:

That was kind of different because it was kind of more butterflies . You know what I mean? Because it was, like you said, just you and I there.

So that was more butterflies like, do we do this or do we hold off or, you know, so it was a little struggle. We did it, right? I mean, you know, we had to support, you know, us. It's colder too, I remember. It was really, yeah. So we didn't keep them off for very long. No, not very long at all, I'm telling you. It was, yeah.

K:

The year before was quite chilly because we did it earlier in the morning. It was really early!

B:

Yep. Yeah, you know, but this one, yeah. And there were so many people. That was my part. Yeah. Yeah. I mean, the year before, we had plenty of people, but this year seemed different. Like it was just a lot of people.

K:

And then another time, a strong memory for me with you was being a part of Danyel's photography studio and going through the Warrior Women portrait experience. That was so fun to be there just helping you, having fun with you, kind of playing in a playful way with photography and makeup and, and uh, Props in the photography studio tell the audience about that experience I haven't talked about that before but I hope to have Danyel on soon, but tell us what that was like for you?

B:

I enjoyed that. You said something about let's go to Danyel's studio where she helps people kind of bring out their power, their warrior type thing.

And that was a blast. Just a blast. You helped me with makeup and wardrobe and stuff like that. And, and I did, I got to pick one final picture and that was amazing. Just amazing. I am going to probably next month blow it up, go get it blown up, but put it on the wall. That's me. You know, that is me. And it was an exciting, I mean, I love Danyel to death, you know, and I love you to death to be able to do that with me, really.

K:

So where are you going to put it in your home?

B:

I think I'm going to put it right in the living room when everybody walks in, that's what they're going to see. Because that's me, you know, I mean, big and out there, you know, as much as you can. The cancer. Yeah. The emotional. Part of it comes later, you know in the evening and stuff, but that's the hard part, but I'm doing it.

K:

I want to hear more about that. But before we move on from the photo, tell us what the photo looks like?

B:

The photo I am got like a black outfit on and the green and blue makeup that was on was Beautiful. That's what Danyel did and I love that makeup and then I have like um I think it's flames or yeah, I think it's flames coming out of my hands for like fire type thing, you know, I think so.

K:

Yeah, she added that in as a special effect post production, I think. Yeah, she added it in when I went and looked at the pictures and I told her, I said, I like that pose, but I like the fire with the other one. Can you put it together? And then that's when she said yes. So for those of you watching on YouTube, I'll put a picture of Brenda in that, um, in that pose. Yes. With Danyel in her studio.I thought that was amazing. Yeah, it was a good day.

K:

It was. Yeah. So you had talked about some of the emotional side of adapting to this change in your body and still recovering from cancer and some of those emotions come more in the evening?

B:

Yeah, they come more in the evening when it's downtime. It's thinking about what's going on and stuff like that. Um, I'm single, so I live by myself. And so that's a struggle at night.

K:

Do you have things that you do to get yourself through those hard times?

B:

Um, yeah, I do a lot of crafts. Um, I enjoy doing stuff with silk flowers and doing different craft ideas. And, you know, generally I just give them away. But, you know, it's fun and it keeps my mind, you know, keeps all that away. So, yeah.

K:

That's another thing that we're planning on doing actually later this week is doing some crocheting together with Danyel as part of a local breast cancer support group. So, that'll be fun. Learning how to crochet. I have never learned before, so.

B:

I remember a very good story. Yeah. And it was kind of funny at the end. Um, you and I went to dinner, um, with the other group, um, I can't remember what they're called. But. Oh, with Best Friends. Yeah. We went to that restaurant thing and then we stopped by New Seasons on the way back. Oh, yeah. Do you remember? I remember. And, uh, yeah. We got ice cream. Do you remember that? We ate that pint of ice cream in the car before we went home.

K:

Because we hadn't had dessert.

B:

Yes, because we didn't have dessert in the restaurant.

K:

I remember that. Yeah, and you told me a lot of your life story at that time when we were sitting in the car eating our pint of ice cream.

B:

I think that's where we really got to know each other was over that pint of ice cream. Yeah, good memories. Yeah. Yeah.

K:

Well, I want to hear kind of the contrast between the woman who was standing in Fred Meyer that day getting bullied and harassed by that gentleman (or non gentleman!) and the woman who's sitting next to me right now and, and how you think differently about your body, how you defend your body in your own mind, to your own self and your demons. If that comes up, if there's any shame that comes up, how do you deal with it these days?

B:

Um, cancer is very, very hard. The treatments are very hard on cancer. It's to kill it. I get that. But it changes a person from head to toe, big time. And I've had to grow a backbone really.

I've had to grow almost armor because I'll still get the comments, you know, not as severe as they were before. Um, but my attitude's totally changed and it's almost like you put a barrier up. Um, I don't know. I guess that has a lot to do with that, you know, I'm single and whatnot. So, I don't have that other partner to really, you know, cry on or whatever.

But, I struggle with the brain part of it, with the chemo. Um, about that I know I want to say something and does it come out right? Not really. Or, um, it gets jumbled up in my head and it just doesn't come out at all.

And I really struggle with the memory part of it. But You know, um, I've just gotten a lot stronger, I think, and, and I have friends to lean on. Um, back then I really didn't. You knew who your friends were and who they weren't. Um, and so I've grown closer to a few, you know, and I'm sitting next to a wonderful one right now that all I have to do is call if I have questions. And that's what you've said all along. And that's what everybody needs that is coming into, you know, dealing with the. The treatments and stuff of cancer is they need somebody that, that's already been through something to be able to talk to.

K:

Well, Brenda, what do you say to, or what would you say to a brand new cancer patient who's just facing mastectomy and treatment today, um, with all the wisdom that you've gained in the last few years since your experience, what would you, what are some of the key pieces of advice you wish you had known back then?

B:

To put your armor on. Don't listen to what they have to say. Um, when you would see people staring or pointing, just let it go. Just let it out of your mind. Just don't listen. Um, and get yourself a coach or somebody to talk to. Um, I didn't have the coach or the friends or the flatties until after I was pretty much done with my treatments and stuff.

I wish I would have had that throughout the whole thing because those women have already been through what I went through. Just hook up with somebody you can talk to besides your family. You know, besides the normal friends that you see on a regular basis, get with somebody that has already been through what you're going through.

It will help a lot.

K:

I so agree with that. It made all the difference for me, too. I think we need, we feel like we need to kind of buckle down and just handle it. It's not so bad. Other people go through this, too. My case isn't the worst case. But, until you get with the others that have been through what you're going through, you You don't really see just how much you really are going through.

B:

Yes, yes. And how much you have to deal with on a regular basis. You know, it is a lot to take in. Cancer is not a game, you know, cancer knows no age, no sex, no color . It does what it needs to do and it wants to prevent you from breathing, you know, really, and you have to be strong and do what you need to do to survive.

K:

Yeah. If you see someone in Fred Meyer who looks similarly without breasts and without hair, what is your inclination nowadays? Do you have, I mean, you probably haven't had that experience, but if you do, what do you think that you would say to that woman?

B:

I'd go up to that woman and say, you look beautiful as ever. You're amazing. You're, you're a survivor. Yeah. Yeah. I'm glad that we can say that to each other. I wish we, I wish I had that back then. I wish I had the coat of armor on. I wish I had that, but I didn't. But I guess I needed to go through that to get to this point. But women are beautiful regardless if they have breast hair, whatever, they're beautiful.

K:

Amen to that. Yes. Do you remember how you found the flat community? Is it on Facebook?

B:

I believe I found it on Facebook. Um, I can't remember who I was talking to. I was talking to somebody from a different little group. Oregon Breast Cancer Support Group. Maybe that's what it was. Maybe that's what it was.

K:

That's where I met you I think.

B:

Okay. That's probably what it was and that's how we, because I investigated a couple other ones too and I thought, no, I, I like this one, you know, so yeah, but yeah, I think that's where it came from. And don't get me wrong. There's a lot of places out there. There's a lot of little support groups. So if the flatties didn't work out, then, you know, there was other ones out there, but I'm glad that I was able to keep in contact with you guys. Yeah. Yeah, there's so many little niches within the breast cancer community There's triple negative. There's lobular like me, you know, and then the way that we look afterwards the you know, flatties versus You know people who have had To explant that's another you know, special group people that understand going through having their hopes up about having new breasts and then their new breasts not working out for them.

K:

So I feel like we connect around those little minority margin experiences.

B:

Because us women that are in the flatties have a little bit of this and a little bit of that. So we kind of have all those different little groups in there. You know what I mean?

K:

Yep. Yeah. Well, thanks Brenda for being here. Thank you so much.

I just want to say that I'm proud of the woman that you are today. You're taking such good care of yourself and advocating for yourself and being alone. It's hard to do that.

B:

I know it is. It's a struggle. But I'm just thankful to have you as a friend. So thank you so much and thank you for doing this. I figured that I have, I got cancer for a reason. I got a cancer so that I could teach somebody and hopefully this podcast will teach somebody what I went through and maybe they won't have to do the same thing.

K:

Yeah. Yeah. Don't stay alone. If you're isolating, um, reach out and find a group and. Find a way to connect with people in person. I think that's really good, really good advice. I'm so glad that you're just down the street from me.

B:

I know, me too. Thank you so much. Yeah. Thank you.

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

Links:

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

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

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

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

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

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

Transcript:

Today's another solo episode where I'm reflecting on my last guest conversation with Christina Miner. We talked about capsular contracture in the last episode, and I just want to reflect a little bit more on the meaning of this, the implications of this, the frequency of this, and a little bit about some of the risk factors. I realize that this is a very controversial and touchy issue. And by talking about these things, I want to remind listeners that I'm not taking a side. I don't have an opinion on whether breast implants are good or bad. I feel like it's still very gray, and it's a very personal decision, very much having to do with your tolerance for risk. I feel like I made an intentional choice to invite my first guest on, Michaela Raes, to talk about her positive experience with implants because I do feel like I am skewed in that most of my friends in the breast cancer community are flatties and a lot of those friends have explanted it because they have become sick as a result of their breast implants. But I don't want this podcast to be singularly about the flattie perspective and rah rah flatties. I really want it to be helpful for everyone in the breast cancer community. And I'm doing this episode in particular, not just for the brand new patient that has to decide about whether or not to get implants. I'm doing this episode to talk about ongoing risks for my friends out there who already have implants. You need to be vigilant. You need to watch those implants over the years. And certainly you need to get them replaced when they're wearing down and breaking down in your body. It's still the case that most of the people who get breast implants are not breast cancer survivors. About two thirds to three quarters of the folks who get breast implants are just getting augmentation. They are not cancer survivors. And so these things that I'm talking about today, whether it be capsular contracture or breast implant illness or cancer, So I'm going to read the definition from the National Center for Health Research about what capsular contracture is. Their definition says it's one of the most common complications of breast implants. In fact, it's over 50 percent of the population of those who get breast implants that have some amount of capsular contracture. Capsular contracture is when the scar tissue capsule that forms around the implant hardens. So it's natural for an implant to have scar tissue around it, but it's not natural or intended for that scar tissue to harden. And in some cases, the hardening of that tissue can be quite painful. And it can distort the shape of the breast, and it can make mammography more painful and less accurate. Removing the implant and the capsule without replacing the implant is the only recommended way to guarantee that this problem is corrected. According to the National Center for Health Research. Which is a National non profit think tank and lobbying group that tries to help the FDA be more responsible in its use of or approval of medical devices in general. It's kind of the main aim of that organization. Now with capsular contracture, you don't always have a problem for the patient. If it's just slight hardening, it may not be something the patient ever notices or is bothered by. Uh, but I, when I go to breast cancer walks and I table for Stand Tall, AFC, to talk to folks about flat closure. A lot of times I will have women walk up to me and talk to me about how unhappy she is with her implants. And the most common complaint is that they're rock hard. And why didn't they tell me these things were going to be rock hard? I don't like hugging people anymore. I don't like holding my children because I've got these rocks in between me and my children. What they're describing is, I now know is capsular contracture, but because we don't go back to our plastic surgeons and have ongoing conversations with them about how our breasts are feeling and how we're experiencing our breasts, we don't get told that. And so, you know, you can go on and on and even be in a breast cancer support group and have three or four of the other women in that group say, Oh yeah, mine are really hard too. I guess that's just the way it goes. So when I'm tabling now and I hear that story, I tell women to please go back to their plastic surgeons and ask for them to advocate for the insurance company to pay for removal of their implants and to get a Goldilocks procedure instead. You can still have a small breast with just the skin that's around your implant. with a Goldilocks procedure and most plastic surgeons are very happy to do that. Very, very cognizant of the discomfort of capsular contracture and the fact that it's not an intended outcome. It's not something that they want for you. So with Christina, she had an extreme case of a capsular contracture. Not only did she have lots of hardening, lots of contortion, but that thing was being eaten by her body. It was also an immune reaction. She was having multiple responses to the implant, and she experienced rupture, which is another side effect and possible risk factor in getting implants that we just don't hear about. Even folks that are given implants, they don't get to read about or talk about the likelihood that they would have a rupture or a leak. And so I want to read the description from the National Center for Health Research about rupture and leak. When a saline implant ruptures, it usually deflates quickly. But when a silicone gel implant ruptures, you may not notice any changes. And the rupture may not be detected by a doctor or a mammogram or an MRI or ultrasound. And MRI is recommended for silicone implants every 3 years for everyone following surgery. And every 2 years after that to check for a silent rupture. So it's likely that after 3 or 5 years that your breast implant will rupture. And you may not know it if you have a silicone implant. These MRIs that are recommended for follow up are not usually covered by health insurance, and this is something that people really should have been told really early on. Um, they are highly recommended to, um, just make sure that your implants are still intact and still the same shape that they should be, but they may not be paid for by your health insurance, which is a really big bummer. And silicone might migrate in to the nearby tissues such as the chest wall, lymph nodes, upper abdominal wall, and into organs such as the liver or lungs where it can't be removed. And since migrated silicone can cause health problems, it's currently recommended that any ruptured silicone implant should be removed immediately after the rupture. And treatment of these conditions might be at your own expense, not covered by insurance, or the manufacturer's warranty, unfortunately. And when I talk to friends in the breast cancer community that have had their implants, for more than 10 years already. A lot of times they have a really nonchalant attitude about that. Oh, I'm sure it'll last 20 years. I heard somebody say that their aunt's lasted 20 years. Maybe mine will too. I really discourage them from letting it go that long because the likelihood is that It will break down in your body and you will have some health effects from it. So another risk of breast implantation is something that we talked about in episode 13 with my friend Anna. She had something called breast implant illness. And this is something that's really hard to quantify or even explain in an objective way since the medical community has still not come together around a definition of it. It is. very well acknowledged by most medical professionals now as a true condition. So that's good. That's progress over about 10 to 20 years ago when it was kind of denied in the medical community. And the FDA has started to study it, which is great. They started tracking in 2008. the number of complaints that they had about breast implants and the number of complaints that they had specifically with the types of symptoms that come with breast implant illness and they found about a little over 10, 000 reports between the years of 2008 and presently, 2024, that qualify with the the relevant symptoms, which are fatigue and pain, usually mostly joint pain, skin conditions, migraines. memory loss, and brain fog. Several studies of women with breast implants have shown that they're significantly more likely to be diagnosed with one or more of the following diseases compared to other women. All of these diseases are autoimmune diseases, so they are chronic fatigue syndrome, multiple sclerosis, Sjogren's Syndrome, which my guest in episode 15 had as a result of a drug, um, coincidentally, and systemic sclerosis or scleroderma. There are so many different accounts of how many women get breast implant illness every year and unfortunately there's not a lot of studies on it so there's not a lot of objective data. I can't really tell you how many women are actually struggling with this. Mostly because, like my friend Anna who was in episode 13, they don't know that they're struggling with something related to breast implants so they can't go to the FDA and complain about their implants. So So many women have lingering symptoms for decades without running into anyone that knows that this set of symptoms actually is a result of your breast implant. So we need lots more awareness, lots more education. That's why I'm talking about this issue again on this episode. Just to get it out there so that we can talk about it in our breast cancer support groups and in our breast cancer communities. But the legitimacy of this condition is proven by the fact that removal of the implants resolves the symptoms in so many cases. The FDA said that in seven out of eight cases, there was a relief of symptoms in the folks that did get get their implants removed. So this shows that it is a legitimate medical issue that does need to be formally acknowledged by the medical community and defined well and taught about when we're giving out breast implants, right? There's another really scary side effect of breast implants that I will not focus on in this episode because I do want to have a guest on to talk about it who has more experience than I do. But there is a type of cancer that is believed to be associated with breast implants. And originally it was thought to be associated with the textured types of implants only, but it is still kind of being sorted out whether or not it's just that type of implant. And it is called "breast implant associated anaplastic large cell lymphoma." And to a smaller degree, there's another type of cancer that is thought to be associated with breast implants called "squamous cell carcinoma." And I hope to have Raylene Hollrah on as a guest to talk about this. She is the loudest advocate out there. She was, I think, the 30th person in the U. S. to be diagnosed associated anaplastic large cell lymphoma diagnosis after implantation. She has a website called Just Call Me Ray, and it's ray, spelled R A Y, dot org, and that's where she tells her story of having been diagnosed with a second cancer because of her implants. Uh, like I said, I'll hope to have her on to talk about that sometime. And I won't go into all of the details about this cancer risk, but it is, uh, thought to be a risk of 1 in 4, 000 patients, so very, very low risk. But, um, still being ironed out which types of implants are possibly going to cause this type of cancer and at this point, I just want to say again that it is my belief that most of the women who get breast implants are very happy with them. They don't call their breasts rock hard. They are very pleased with the outcome and they don't get any sort of disease or autoimmune disorder as a result of their breast implant. But because these risks and possible side effects do add up to a lot of concern and worry, I think for those of us who are part of our community who have implants or who are going to pursue them, we just want to make sure you have the whole picture. That you know how to watch and monitor and what to look for. When I went to get my tattoo on my chest after mastectomy and a delightful woman who did my tattoo art, uh, told me the story of how she had almost no breasts, kind of like I do now. And, um, she is really, really happy with her new breasts. And she wears clothing that accentuates them and really celebrates them and in her relationship with her husband. And she couldn't be more thrilled with them. So I think for people like her and me who have had both of the experiences of Almost no breasts and large breasts. Um, it's easy to know kind of where you stand and what you feel, as a result of that body type, but you never really know what you're missing if you haven't experienced it. And that's part of the difficulty of making the decision to get breast implants. I think, especially after breast cancer, you don't know what being flat is going to be like ahead of time until you experience it and look in the mirror afterward. So I understand why it's really hard. And it's, it's hard to be rushed into that decision as well. I think for patients like Christina, last week's guest, it's really easy to know what's right. You know, if your breast is, you know, implant is exploding outside of your, your body and it's like, Telling you that it wants out right away. You know, it's, it's easy to get that explant and to go on to be flat, but I think for people like Anna who had to live for a dozen years with these mysterious symptoms that she had no idea were connected to her breast implant, then it's a little bit more of a sad story to look back on and to tell. So if you'd like to read more about all of these phenomena, the rupturing, the possible cancers, the breast implant illness and capsular contracture, the website I would send you to is the one for the National Center for Health Research. Their website is www.centerforresearch.org, and it's right on the front of their page. Um. the information about breast implants and risks. And you can go and look for their black box warning document and their checklist document. And I would recommend printing it out. So you have it handy. I had a good friend just diagnosed with breast cancer a couple of months ago, and I was able to be strong and objective and holding this in my hand while talking to her, knowing that I'm not using my bias as a guide, but Just listing out the facts for her because, unfortunately, I know that her surgeon probably doesn't have time to do that. So, I would highly recommend going and printing out the checklist for friends of yours who are going through the decision making process or friends of yours who are suspecting that they might have a problem with their current implant. Unfortunately, the FDA is pretty slow to correct any of this. industry sloppiness. And we don't know exactly which kind of implants cause which kind of problems. The industry has not been pushed to do enough good research on the effects of their products, unfortunately. And so we also need to really push Our Congress people to push for the FDA to regulate this stuff better so that we can feel more confident recommending that our friends do get implants when they feel the need to without being nervous about them. And so I think that's a really important thing for those of us who are comfortable talking to Congress. People or writing to them or sending them an email. I think that would be a good use of our time around this issue as well. The bottom line is I think some of us just have bodies that respond more strongly to foreign objects. So it's good to know these things and have conversations. Know where to point people for the resources. Be sure to let me know what you think of this. I have a new Substack newsletter that's really interactive and I have a number of threads for discussion on it So I'm excited to see your your ideas and input on this. If you subscribe to my Substack you'll get the email updates for it, and it's just Uh, abreastcancerdiary. substack. com if you want to join. And that would be the place to respond to these kinds of kind of touchy discussions. Next week, I will have a very personal interview with a dear friend of mine here living locally, um, to me. I've decided to do a couple of interviews with friends that I see often in my own breast cancer community who are pretty newly diagnosed and still really struggling with their diagnosis and outcomes. One is still struggling with an early cancer diagnosis, early breast cancer diagnosis, and the other one is dealing with a second cancer diagnosis.

I feel like I've kind of erred on the side of telling stories of victory and encouragement and coming out of the struggle with a great perspective. But my next couple of interviews are going to be a little bit more personal and raw and kind of from, uh, the midst of the struggle, I guess, and things not being resolved yet. So I'm happy that I can tell their stories too because these are really important stories and maybe even more meaningful for those who are really struggling and coming out of the midst of change and body resolution. And hopefully you'll relate to them. If not, feel free not to listen to them. If they're a little bit too triggering for you, they won't be for everyone, but I look forward to having these very special guests that are friends of mine from my local community. And I'll talk to you then.

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

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Resources from this Episode:

Christina's interview with Women's Health is here

Transcript:

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

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

K: Oh, really? I didn't know that. C: It's been a while ago, but I was like, oh, and I used to always think about you and just like, I hope she's okay.

K: Aww. Thank you. Yeah, when you share the raw stuff on YouTube, you kind of leave people hanging, and then YouTube doesn't show them the follow up video that says, I'm doing great. So it's kind of frustrating sometimes, but. Thank you for following me. I had no idea. So you live in Prince George, Virginia, on the other side of the country from me, and you are a counselor and working towards doing a master's in counseling and becoming a clinical therapist. And up until now, you've been also, you've been doing life transition coaching with individuals as well. Is that mostly online?

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

Usually it's private organizations.

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

C: Yes. Well, not really new—I've done it before. It's just, I wasn't licensed at the time. Before breast cancer, I also was a partner in a mental health agency, a community based program. after breast cancer, I kind of, you know how it can be kind of stressful and you just like, you didn't, I didn't want to manage anyone. I just wanted to relax for a little bit. So that's when I said, you know what, during this time, I'm just going to see which direction I want to go. And I was like, I talked to my partner and I was like, maybe I'll. Go ahead and just get a license in counseling and become a therapist. And so that's how I went in that direction, all for the hopes of one day having a wellness center where I want to be able to just like, not just therapy. Everybody doesn't want therapy all the time. So there's a lot of holistic things that people love to embrace when they're going through life period. Not just necessarily something that has happened to them, but. As you know, because I know you really, you know, you love various holistic things, yoga, you know, um, Pilates, uh, mindfulness meditation. So I want to have a wellness program, but I will probably just start out with the outpatient therapy, um, center first and then start incorporating all the other holistic aspects to it.

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

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

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

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

Flat was given to me as an option. I must say by my doctor as one of the first options, she was like, you can go flat or you could, and then she started riddling off everything else. And I was like, okay. And I had never really heard a flat, you know, like aesthetic flat closure or just that period as being an option. I was just blown away that because a lot of people don't get that from their doctors. So she asked me about, um, you know, I could get expanders and then I could get… What was it? The gummy, I think was the gummy implants afterwards, um, after my skin expanded back out. So I was like, okay. So I asked her about the material of the expanders and she was like, it's the same material as the implant, except for I'm going to inject saline in it for your, um, when you come in here every so often. to expand it to the size that you want. And I was like, okay. So did that. But soon right after surgery, I was just sick, constantly. I had a temperature of 103 for the first three days after surgery. Um, didn't know why, but it went away. But then I had a low grade of 99. 9 all the way up until I got the expanders taken out. Um, I had a rash. Every time I ate, as soon as I put it in my mouth, it came right back out. Um, but I didn't have stomach cramps, but it was just like, as soon as I ate, it just came out and then I had headaches. I started having headaches. I started being fatigued. I started having sweats. my joints were aching and then I would try to walk and it was like, to get up, I was like having difficulty. Um, as if I had like arthritis riddled body completely, it was just a lot of different symptoms that I had at one time.

So I was, my first thought after probably about a week of having, um, after the surgery, I'm like, "what is trying to kill me?" Because. It just, it got worse and worse every day. So on top of that, I started noticing that the side where the cancer was, the expander was looking like it was pushing out. It was like growing. And I was like, okay, I haven't had a fill this week. It shouldn't do this. But as you know, during, after my surgery, COVID hit, so I couldn't go to the doctor anymore. I had to stop, but I was fine with it because I was at the point where I didn't want any more fills anyway. And every time that I was going, when I was telling her how bad. I was hurting and how sick I was. And she was asking, questioning me about the temperature. She was like, you know, I said, well, maybe then I, I was just feeling terrible. Like everything you can imagine. She's like, "are you coming down with something?" And she was thinking COVID. I was "no, not that I know of I've been home." So I had all those issues. Now I couldn't see her and now all of a sudden this left side is starting to contort, starting to turn black. it looked like I had cigarette burns on my skin. It looked like the expander was coming out my chest when I was turning. I could hear the slushing of the saline in my chest. It was an absolute nightmare and then it started happening on the right side. But not as prominent, but it was happening. So I'm telling her all these different things and she's like, okay, maybe you have an infection. She's trying to look at me on camera. She couldn't really see some of the things I was talking about. And sometimes the camera would fail. It was just a mess. So finally when I went in to see her, she was like, cause she couldn't at that point, she really couldn't see everything. Cause it hadn't, it wasn't as bad, but the day of surgery, I was like, well, can we just go ahead and do the surgery? So the day of surgery, looked at me. Well, I'll take that back. We had another appointment in between surgery and the day of surgery. And she said, "Oh my goodness, you must have breast implant illness. I think you may have breast implant illness." And I said, what is that? And so she was telling me how like the body can reject the material of the implants. Um, I said, of course I Googled and I was like, "oh, you think I'm losing my mind?" Cause a lot of doctors associated with, um, some, a mental disorder, you know, like, oh, that it's just, it's in their mind. And she was like, "no, I believe my patients. She said, you got about every symptom here." Um. So she said, well, let's see how you do with, you know, the implants. the day of surgery, she said, but I don't know if you're going to do that well, because if you're having this reaction, she said, but maybe I could, she said there was different types and stuff. And I was like, okay, I said, well, I don't know if I want to do that. She said, well, we don't have to. She said, but I'm thinking that might be it. She said, but I don't know for sure. So that's kind of how she worded it. So the day of surgery though, at this point, Everything was twisted. Everything was about to pop out my chest. And she looked at me and she's like, you have capsular contracture. it's the highest one, the highest level, so what do you want me to do? Do you want me to do an implant or do you want me not? I said, look, at this point I'm trusting God in you. And that's all I know to trust because I'm going to be sleep. I said, and I've never gone through this before, so I don't know that you possibly could do while you're in there. I tell it, she said, well, you're kind of leaving this kind of vague. I said, okay, then if you think that I'm damaged severely, do not put nothing in me. Leave me flat and that's it. So I woke up, she tapped me on the shoulder. She said, you're flat. She said, and I will never put an implant in your body. She said, because you were damaged that bad I had lost a layer of skin. So when she went in for the depth perception, the implant was busted and it popped open, going all over her assistant and everything. And she said, I was one of the worst cases she had seen with the hapser contractor and the breast implant illness. So after that, I came home like that same day, I felt so much better. And then when I came to my first appointment, she's like, you look night and day and my temperature dropped. So that's what the expanders did for me. So I didn't make it to the end point.

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

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

K:

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

C: Um, that day, like right before I went into surgery, because, because of everything that was going on with COVID, it wasn't like I had this great workup, prior to, because the doctor's office was closed. You're on a camera that, you know, they didn't really use that prior to, so they're trying to figure it out. I'm trying to figure it out from my end. So the video wasn't always quality. Um, and then, yeah, I couldn't go into the doctor's office till like, I think, like I said, I've had, I had those two appointments. The one in between the surgery and the one prior to that, but that, that was it. Basically right before surgery, she came in and taught me for an hour. She just sat there with me. I was her first case after COVID. So, well, you know, once they opened the doors for us to get surgery and I, she was trying to get me in prior because I kept on telling her, like, it's going to fall out. It's going to fall out. She's like I cannot get you in. And I was like, but why? I was like, this is like an emergency. She said that she had even taken the initiative to call the insurance companies and call, you know, talk to the hospital and they all said it was cosmetic. And I'm like, excuse me, like, I didn't just wake up one day and say, I want to alter my body and I want implants today. It was because of cancer, why I went this route. So how is that deemed? I said, I get why they say cosmetic because it's an implant, but I don't understand why it wasn't—it was nothing that I elected to do because of just wanting to. I because of something that happened to me out of my control.

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

C: Because even if it was elective, if somebody's telling you this is falling out my chest. I did have a friend, her implant fell out in her shower during COVID they got her in, but it's like, why does it have to get to that point? Because now it's a risk of infection really bad because I'm at home. So, yeah, but. Yeah, that day of surgery, she sat with me for an hour and, um, I remember it was her first surgery and coming back from COVID and they got their vaccine. No, tested that morning for COVID vaccine had come out, but they had got tested that morning for COVID, which was like the first test, I guess, that they had had. So they were all talking, you know, it was just, a whirlwind of events, but she sat there with me for an hour. And went over to various things and she said, well, if you do go black, then what we'll do, we could later talk about other, you know, um, if you want to do other revisions or anything of that nature, but I just, I was tired at that point after I woke up had to realize I'm black. So, no, I just had maybe we talked about it for about 15 minutes and it really wasn't talking because. I had her kind of going in there blindly. Like "you figure it out because I don't know what you're about to go into and you're the professional." She was like, that's not fair. I said, no, but I don't know. I don't know. And this was so unexpected. And with COVID I couldn't come in and down and have, I said, you've already had a conversation with me about different routes I could go. I said, and this just, please use your best judgment.

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

C: So because I put her in that kind of gray area what she did was primarily flat and she left a little bit of dog ears on the sid—not much, but she left some. She was like you can go back and we can do a revision. She said but I'm not putting an implant in you ever again in life She's like nothing even remotely close to an implant. Um, and she talked about you know, like fat grafting and different things like that. She did not do DIEP flap because she's like the surgery is like too long, she just doesn't do it, but she'll give me a referral. So she went over those options with me and she, she said her reasoning for leaving was because in case I woke up and she said, you know what, maybe I do want to try this, that, or the third. She said, if you want to try an implant, feel free, you just gonna have to go to somebody else. But she did leave a little bit of skin back for that reason, but that was only because I left her in a very gray area with my decision and I understood why she said, now I can go and take that off. Said it would be another surgery. I hate to put you through it. She said, but because you left me kind of in this gray area, that's what I did.

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

C: I would say that—I don't know what, what has always spun out to me with this whole thing was just hearing the day that I got the diagnosis and hearing the word carcinoma. Um, ductal didn't matter in situ. I didn't care about any of that. It was just carcinoma. So, I used to work in the medical field and I used to work with this one doctor whose idea was if you got cancer, be as proactive as possible because it's a disease that's one of the worst, you know, like it, When it comes back, if it comes back, it can come back with the vengeance. So his thing is do the best way, do whatever you can first to eradicate it versus kind of like taking a little bit and that was his. No offense to anyone out there who's against that, I'm not trying to say that's what you should do, but when he spoke with me, that always stuck in my head. So, that being said, when I woke up flat, I took it as the cancer's gone, to my knowledge, you know, and I don't feel bad. Like, I was so sick from breast implant illness and the capsular contractor that even though, because even before that, I had already lost my breasts. My breasts would never be the same no matter how much plastic surgery they gave me, so I already felt there was that void there of not being who I once was, right? So with that being said, when I became flat, it was almost like, so I had, you know, I went and get my, um, prosthetics and stuff and people were like, okay, you can wear your prosthetics. That'll help you make you feel better. And I said, you know what? No, I want to embrace who I am now and I'm flat and that's who I am. Now, do I have moments where I see people in bathing suits or certain dresses? And I'm like, "Ugh". Yes. I do have those moments. I allow myself to be in those moments. But I don't dwell in those moments because to me, I'm alive. So because I'm alive, I'm going to talk about whatever I need to talk about to help other people. And it gave me almost like a sense of confidence that I never had to walk around flat. And I know sometimes people look at me weird, probably like, "she a boy, she a girl?", or whatever the case may be. But I'm okay with that still because they don't know my story, but Hey, if you want to use it as a way to get to know me, we can talk about what happened to me. And so I kind of, I use it now to the advantage of sharing with people about flat aesthetic, aesthetic, closure, and also about cancer in general, um, breast cancer. But yeah, at first it was, you know, it was like, okay, this is my new, this is my new me. A part of who I am now. She did what I asked her to do, and I told her, I said, I'm trusting God and you. And I, and I believe in that wholeheartedly that she did because she said, while she had me open, huh, I could do this to maybe counteract the reaction. But she said, Nope, I'm gonna leave her flat. And I'm glad she did because if I would have had to go back, I would have probably been upset. But, um, so no, so I'm, I'm grateful. I embrace my decision. When I woke up, I was like, "Oh, okay." And that's exactly what I did. I was like, okay. And then when I felt so much better, I was like, woo. And then I did try to prosthetics a couple of times and I'm like, no, then I was like, I go back to work. Should I wear them? Or should I just be flat? You know, cause I could walk around with them one and nobody ever know nothing. And I was like: "no, I'm not, not me." And it's not to say that I won't ever wear a prosthetic or ever get some type of reconstruction far as take, you know, going a little bit more aesthetic, um, flat closure. But the point that I'm trying to make is that I am allowing myself to accept me for me because there was a time, even with breasts, I was not very confident. I had very low self esteem and very low self worth because of things that had happened to me. as a child. Then eventually I got out of that and I said that stuff is not going to define me, but I still had issues with image. Even when I was skinny and healthy and athletic and this, that, and the third, I still had issues with image. And I was like, I'm not going to allow that to put me in a place of depression for the rest of my life. I'm going to take control over this. And so that's what I did.

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

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

K:

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

C: There is a story. Um, so I, after, you know, breast cancer going flat, all those things, I ended up joining the first group I joined was, uh, Here for the Girls and it's an organization in Williamsburg. And I ended up being a co facilitator, very involved with them. And then also I had joined, um, Stand Tall Aesthetic Flat Closure. Well, when I had joined Actually, they found me first because they wanted me to post a photo of myself on their Instagram. So I was like, sure, I'll take it. It's fine. And, um, so then from there, it was Renee and Kim. Um, Renee and Kim came to me. Renee Ridgely? Okay. And then Kim Bowles, right? Yep. Um, the one from Stand Tall, which is Renee, and then Kim is from "not putting on a shirt". So they came to me like, "Hey, would you be interested in doing an article with women's health magazine?" Well, when they told me, I was like, sure. But then I thought, well, is it the real women's health magazine? Or is it like, Some, some other magazine that I'd never heard of. the editor contacted me long story short. And, uh, I did this art, I did this spread of women's health mag. Well, it was in, it wasn't in the mag, the paper version, it was online. So they thought they were just going to put me like down below, like somewhere about the health, you know, like a health article, click on, they didn't real, my editor didn't realize they were going to feature it on the very front for like the whole issue. So they wanted to do a photo, you know, with me with my shirt on or not, you know, it was up to me. And I was like, I had prayed about it. I was like, Oh, should I, should I not? And then I was like, no, yes, people need to see this. Right. So I ended up, um, I said, I'm gonna do this. So they said, well, would you, we can find you a photographer around and I was like, no, I want to come to New York. I want the whole experience because I knew they had more, um, their photographers. They were probably a little bit more educated on what they wanted as far as what they were trying to capture the ones that they worked with. So they allowed me to come to New York. And I remember the day of the photo shoot, I was standing in the mirror and I said, Oh my God. scars speak. So that stayed in my head all day long. And we did the photo shoot and I was like, wow, this is, this possibly could be a big thing for a lot of people to see who are going through or getting ready to make a decision of going flat or have to go flat. So I came back home, I was on the plane and I was writing out, I made a poem called my scars speak and it just went through my head. Like my scars speak, um, sadness, my scars speak pain, my scars…. It's just this long poem that I wrote about from the time that I found out I had breast cancer to the time that it was no longer in my body. And so many people were like, "Oh my God, I can relate to this. This is exactly how I felt." But then from there, I was like, no, our scars speak. So that's how that title came about. And then I was like, okay, what am I to do at this? Once again, cause I'm a true believer. I prayed about it and I was like, what am I going to do? And it's like that whole weekend I was getting downloads of just everything. Like this is who you need to have up there. And so it's breast cancer, survivors, thrivers, metavivers, previvers that I have to come on. It'll be their caregivers that can come on and, you know, there's a vetting process professionals that work within the breast cancer community, those who can educate us that are doctors, a tattoo artist. I've had various people attorneys. I just want them to share. Some of them have their own personal story so they can share their story. Or they can share how they got into the breast cancer community. Cause I want people to know how, you know, something about them and that they're just not out here trying to get money from people, but how did they get involved and what's their why to being a part of this community? And so I have various people on to share their stories and I love it. I love it. I love it. I love doing it. It was going to be just the IG live and then it just spilled over into the podcast world. Um, so yeah, so that's how that all came about through that one article. K: Wow. So the women's health magazine article, what was the kind of the punchline of that or the headline of that? What, what was the interview like? C:

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

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

C: Yeah, I felt it was because some people are like, oh, aren't you excited? I'm like it's my mission. So for me, when I have what I call assignments, I, I, I do them so I don't get too caught up and even, "Oh, this is huge." Like, and maybe that's wrong with me because sometimes you do need to celebrate things, but I get caught up in, this is something that I've been placed here to do. I need to do it and I need to see it to the end. Um, and so that's how I took that assignment. Like, this is something that could really, really benefit other people. Not just me being out there showing my chest. Um, scars from that, the scars from having children, hysterectomy scars. Like it's not just. It wasn't just that for me. It wasn't about, I didn't feel it was about me. Yes. It's my story, but I felt my story was a vehicle to help other people who felt that they couldn't speak or who had a, you know, they're at a crossroads about making a decision. And I always say this, but it also spoke to the people who are no longer here, who can no longer speak. Who have transitioned into heaven or wherever they are, right? So those people still have a voice. So everything that I do is not just for me, it's for everybody. Cause I'm like, wow, who may not even have anyone in their family who have breast cancer may see that picture and go back and read the article. who knows? Maybe down the line? Somebody in their family have breast cancer and then who knows, maybe, you know, so I always look at the bigger picture and then this year had no clue. This happened in 2022. I had no clue they were going to repost it on their, um, on their Instagram. So the first time they posted, it was like a lot of likes and stuff, but not that many shares, but this time it was a ton of shares. So that even made me happier because it's like, okay, our voices are being spread even further now.

K: Did you share it on your personal, like, actual in person relationship Facebook account? (Yes) Okay, okay. So let's talk about that because I also, um, have shared my bare chest publicly and I have not shared my bare chest, um, except maybe in a very different way. with like a hundred other women, um, on my, on my personal Facebook account with people I've known my whole life and having grown up in the church. My dad was a Baptist minister, um, very similar, I think, to your background in terms of like having a lot of personal contacts who are Christian and maybe even conservative Christian. Um, how does that hit? Like, how do people respond to you and how do you grapple with some of the misunderstandings that may naturally happen when Christian women are getting up and showing their bare skin of their chest?

C: So I, you know, when I said I had to pray about the whole article thing, that was part of it. Like, okay, am I, I was like, I have nothing to show really. It's just a flash, but I'm like, I know how people can perceive it. Like you're still being, you know, indecent. Right. So I, I have learned because I have ministered in prisons and everywhere. I learned early on, I was always kind of considered a little rebel in a way. Um but at the end of the day, I have to live with the decisions that I make. Meaning if I feel that it doesn't bring me peace, not just in my Christina, just being Christina, but like in my heart, what I call my spirit, if I feel like it doesn't bring me peace, then I'm not going to do it. If I feel like it brings me peace and I feel like. Okay. I prayed and I feel like God is really leading me to do this. I don't care what nobody says I'm doing it. Everything that I do. I mean, not everything, of course, but the majority of things that I do Always try to make sure that I really pray about it before I move on. Is it a state that I get it all right? absolutely not because I get a lot of wrong, I really really try to be sensitive to that I walk in my faith with God and what he would call me to do not just what I want to do because me being who I am, I probably would I've done that. Would I've shown that I'm overweight? Cause I always told God, he had a sense of humor. I was going to be a model years ago. He told me I was too short. They said I had all the other characteristics without skinny. I had long hair, blah, blah, blah. And I said, Oh, so you wait till I'm overweight and have no breasts. I am modeling everywhere. No, it's just like, it's just, to me it's like a sense of humor. So you know I'm like, okay, but I'm willing. So because of that, always remind myself. At one point I used to abuse substances and I used to abuse alcohol, right? So because I had gone through a lot of trauma in my childhood and the reason why I'm saying this is because of how I am now. I made a vow that Once I stopped everything I was doing I was functioning. But once I stopped that, once he allowed me, help me to get through that. I would always share what he wanted me to share because my story is not my own. So because of that, even if I feel like, you know what, they're going to judge me, they're going to have so much to say. They're going to say, I'm not walking by faith. They're going to say, I'm not a Christian. They're going to say I'm a heathen. I don't care. Can it hurt? Yes. But I can't care enough to stop because they're not my God.

K: Yeah, that's powerful. That's a big conviction and I'm glad that you have that. Um, I feel like There's, in the breast cancer community, even folks with implants, you know, anyone that's been through breast cancer totally gets it. Your body is different. You should be able to express the difference that you've experienced. And outside of breast cancer, I think a lot of my friends, even friends that are like clinical therapists, social workers, you know, they're a little boggled by it. They're curious. They're not judgmental. But then there are people, especially of the male gender, who just don't get it. Do you have, and you mentioned you have a partner, do you have a partner that defends you in this area and understands you?

C: OH my gosh. So my husband and I have been married forever. We've been married 24 years and when I got diagnosed, you know how they have you to come in for your consultation. So it was my husband, my sister and my mom that I brought in and we were sitting there. And so my question was, what's survival? Well, they're going to tell you five years because that's survival for everybody, right? That's just like a, they put everybody in one big room. Um, so she's going over all the statistics and stuff. So my husband asked a good question, recurrence. And. She said, well, if she does lumpectomy, radiation, if she does lumpectomy without radiation, like she gave me all these different choices and he said, well, what about if she had a mastectomy, you know, like a double one. She said, oh, it drops it to like 2%. He said, we'll go with that. I said, WAIT a minute! I was like, wait, it's my choice! He said yeah, but no, I want you here. With us. He was like, so, so yes, he's to answer your question. He's very supportive. It was, he would never admit this, but I feel, cause I know it was uncomfortable for me. The very first time we were intimate after, you know, after all the healing and stuff, it was, it was strange for the first two times, first few times actually. And he would never admit that's the case, but you know, your partner, right. You know who you've been. And it was like, this is strange for you and me. And but you know, with time. And doing what my friend had asked, told me to do another breast cancer survivor. She's like, you know, just you and him explore your body again and everything. And when she said it, I'm like, that makes sense. So that did help, you know, but, um, but yeah, he's, he's very much supportive. He's, uh, He was like, yeah. And I told him, I, I'm not one of your marines. I was like, you cannot answer for me So, um, I said, but it did, it did make me feel loved and supported genuinely that he spoke so quick and was like, no, take them.

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

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

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

C: I would say definitely continue to fight for what you know is happening within your body because only you really know. And a lot of people say, well, that "pain usually doesn't come with breast cancer" or "you're too young" or this or that, but no, you know, your body, I've, I fought for almost 20 years outside to say that I had cancer a whole 20 years, but I started having symptoms. So continue to voice your opinion, continue to, you know, if you don't know how to advocate for yourself, ask someone who's within this community to help you. That's what I did. I kept on asking friends that had gone through breast cancer and I hadn't even gotten diagnosed. I just knew the symptoms that I was have, I was having and experiencing. not normal. I began to learn from them and learn also how to advocate for myself. And if you don't know how, ask someone to come with you. If you go to an appointment and you may forget something, and this is big, whether you're in treatment or not in treatment. know, tell the doctor you want to record so that you don't forget. I think that's a big, big one and make copies of all your records, not just digital, but print them out. I'm saying all of this is because I see so many people who do not have these, they haven't done these things. And then they are like, I don't remember this. I don't remember that. And so sometimes writing stuff down, you'll forget to write it. Cause it's just so much information coming to you. So ask them, can you record or ask another person to come with you. Just remember that your voice definitely matters. opinion matters. how you want to treat your body matters. And no one should tell you any different than that. And you should fight for the right to ensure that you are being treated respectfully because you can always get a second, third, fourth, fifth opinion. Um, and use that if you need to. And when it comes to advocating, if you feel—some people don't feel like they want to share their story, they, they, they don't want to share their story and that's your right too. But if you feel like you want to share your story, don't be embarrassed because someone out there needs to hear it. Either they are going through it or getting ready to go through it. don't feel like, Oh, nobody's going to listen to me. Somebody will listen to you. Don't, I know sometimes people get caught up in numbers. Well, I didn't get that many likes or I didn't get this or that. Don't worry about that. Just share your story, Share your story to help other people. So that's basically it for me.

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

C: Well, um, if you want to find me personally, you can look up Christina minor and that's M I N E R and Christina is C H R I S T I N A. I just always assume people know CH because people try to fit K, but, um, so you can find me at Christina minor, or you can find me at Our Scars Speak and that's on ig and it's both of them on IG um, Facebook. And then when it comes to YouTube, you can find me at "our scars speak" and also podcasting at our scars speak. So very, very simple.

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

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

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

C:

Absolutely. Thank you.

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

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

Transcript:

Kathleen:

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

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

Tina Conrad

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

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

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

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

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

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

Kathleen Moss

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

Tina Conrad

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

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

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

Kathleen Moss

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

Tina Conrad

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

Kathleen Moss

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

Tina Conrad

Oh, good. Thank you.

Kathleen Moss

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

Tina Conrad

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

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

Kathleen Moss

Did your mom have reconstruction of any sort?

Tina Conrad

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

Kathleen Moss

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

Tina Conrad

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

Kathleen Moss

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

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

Tina Conrad

I did. Yes. Yes.

Kathleen Moss

And you're 11 years out.

Tina Conrad

Yeah.

Kathleen Moss

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

Tina Conrad

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

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

Kathleen Moss

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

Tina Conrad

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

Kathleen Moss

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

Tina Conrad

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

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

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

Kathleen Moss

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

Tina Conrad

yes

Kathleen Moss

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

Tina Conrad

Mm hmm.

Kathleen Moss

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

Tina Conrad

Yeah.

Tina Conrad

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

Kathleen Moss

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

Tina Conrad

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

Kathleen Moss

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

Tina Conrad

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

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

Kathleen Moss

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

Tina Conrad

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

Kathleen Moss

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

Tina Conrad

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

Kathleen Moss

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

Tina Conrad

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

Kathleen Moss

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

Tina Conrad

Yeah.

Kathleen Moss

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

Tina Conrad

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

Kathleen Moss

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

Kathleen Moss

ah So be sure and and rate and review and send me your your screenshot at my email address at [email protected] 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.