STILL Ourselves after Mastectomy

A Breast Cancer Diary

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.