Caitlin: [00:00:10] Hey, everyone, welcome to The Down There, a podcast where we have candid conversations about all types of bodies in order to destigmatize what we keep down there. I'm your host, Caitlin. And I'm so happy to have you with us for my conversation with K. K is a dear friend and colleague of mine from grad school. When K found out that she is a carrier of a genetic mutation of the BRCA one gene, which is correlated with a significant risk of breast and ovarian cancer, she asked her friends for help as she underwent risk management surgery. A double mastectomy with reconstruction and eventually a hysterectomy. K documented her experience on social media, creating more awareness in her community about being BRCA positive and what it's like to undergo these types of surgeries. Before K shared her BRCA positive status. I was unaware of what a BRCA mutation meant, and I bet some of you may be as well. So I have a short primer here compiled from the American Cancer Society, Mayo Clinic, and National Breast Cancer Foundation, links to which you can find in our show notes for more in-depth information. Everyone has BRCA one and two genes. They make tumour-suppressing proteins that help repair damaged DNA and prevent abnormal cells from turning into cancer. When either of the BRCA genes are mutated, DNA may not be repaired properly, leading to a higher risk of breast and ovarian cancers, as well as prostate cancer, pancreatic cancer and melanoma, among others. According to the National Breast Cancer Foundation, having a BRCA-mutation, as it's known, is relatively rare, affecting about one in every 400 people in the U.S.. While a BRCA mutation is more commonly known to affect people with ovaries and/or breasts, it can affect anyone. Fun fact, everyone, all bodies have breast tissue. Early on in the interview, I ask K about the effects of a BRCA mutation on people with breast tissue. And as I'm saying it, my spider senses are going off. I'm thinking, wait, isn't everyone born with breast tissue? The answer is yes. So I'm calling myself on that now and celebrating that we are all a teeny bit more non binary. If somebody is BRCA positive, there are several options available for managing risk factors, including frequent enhanced screenings like mammograms and breast exams, and prophylactic or risk reducing surgery to remove at-risk tissue, which is what K opted to do. In this candid conversation, K shares her story about learning she is BRCA positive and her physical, mental, and emotional journey with a double mastectomy, with reconstruction and hysterectomy. If any of these subjects are sensitive for you, we have included timestamps in our show notes for specific topics. You can also find a transcript of this episode on our web site. www.thedowntherepodcast.com. K wanted me to emphasize here that if her story doesn't resonate with you or match your own experience as a BRCA positive person or as someone who has undergone similar medical procedures, that that is OK. This is just one person's story. Everyone's experiences and feelings are valid. I couldn't agree more. Quick note before we begin. When we recorded this episode, K was going by Karen, which is how you'll hear me addressing her in the interview. I mention this now to clear up any potential confusion. And so her friends don't drag me. Here's my interview with K.

Caitlin: [00:03:06] Our guest today is Karen. She is a production manager for Live Entertainment, an entrepreneur and co-founder of the woman-owned creative shop 'All of the Things NYC'. Karen also happens to be a carrier of a mutation of the BRCA gene, which she has so generously agreed to talk with us about today on the pod. Karen, welcome to The Down There. Thank you so much for being here.

K: [00:03:29] Thanks for having me. I'm very excited to do this. I've never done anything like this before.

Caitlin: [00:03:34] Oh, we're new, too. So I'm so glad that you are here. Let's just get some basics covered first. Most people have heard in some form or another about the BRCA one and two genes. Would you call it BRCA (pronounced be-rack-ah)?

K: [00:03:48] Yeah. So it's generally referred to as BRCA within the community.

Caitlin: [00:03:53] That's also way easier and quicker to say.

K: [00:03:55] Yes.

Caitlin: [00:03:57] I feel like we don't necessarily understand what their purpose is in the body when they are functioning normally.

K: [00:04:03] When they're functioning normally, you don't really see anything. It's when there's a defect that you tend to have higher prevalence of breast cancer and ovarian cancer.

Caitlin: [00:04:15] And is it a mutation of the gene?

K: [00:04:18] Yeah, it's a mutation where something is added or something is deleted. So what I have is a deleterious mutation, which means that I have some form, some piece of it has been removed from the gene. Which I don't know if I'm explaining that in a great way. I'm not super scientific about any of it. But I have a deletion called three eight one nine deletion five. I don't know much about the chromosomes and all of that, but I do know that and that it's prevalent in a certain small village in Poland.

Caitlin: [00:04:54] Ok. Wow. That is extraordinarily specific.

K: [00:04:57] Yeah. Some, some mutations, some of the BRCA one and BRCA two mutations, are extremely widespread. There's a couple that are very widely studied because there is a larger community affected by them. Ashkenazi Jewish folks in particular have high prevalence of a certain, I believe it's BRCA two gene, and so there is a very large community that has a specific mutation.

Caitlin: [00:05:26] When you hear about BRCA mutations, I think about Angelina Jolie. And you know, you hear about it increasing the risk, the risk of breast and ovarian cancer. But does it affect only people who have breast tissue and ovaries?

K: [00:05:46] No. So on a side note, I'm glad you brought up Angelina Jolie. And I just want to talk about her for a moment, because if I didn't have her, I would have no way to talk to people about this. Mostly most people when I talk about BRCA, I'll ask them, have you heard of this? And they say, no. And then I say, did you hear about Angelina Jolie? And, you know, the, the mutation that she has. And they'll say, yes, I do. I know about that. And then I have a starting point to talk to people about it. So I'm really thankful for her. But to go back to your question, you know, it's not just people with you know, I guess we would typically say feminine breast tissue or a uterus that are affected by this. Men and, you know, non women are also affected by this. It does lead to higher chances of, I believe, prostate cancer and certain other cancers. I believe there's also a higher risk of skin cancer as well.

Caitlin: [00:06:47] Wow. So really kind of anybody can be affected by this.

K: [00:06:51] Yeah, everyone can be. And men are not generally tested as much or I should say non women identifying folks are not tested as much because it's not really as widely known that it affects everyone.

Caitlin: [00:07:07] If you're thinking about getting tested for this, is it a rare occurrence?

K: [00:07:13] It is considered rare. I don't know the exact prevalence in the general population, but it's odd to me that it's considered rare because after I sort of publicized my journey, I found out that multiple friends of mine also have a BRCA mutation. They would message me on Facebook. They would email and say, oh, my God, me too. So I think it's less rare than we might think.

Caitlin: [00:07:43] That's really good to know. Now, when you're considering getting tested for BRCA mutation, what factors would you look for?

K: [00:07:54] You would look for a family history of breast cancer or ovarian cancer, uterine cancer. You would look for being in a high risk population, such as being part of an Ashkenazi Jewish family. You would also look for, you know, any history of dense breast tissue or problems with your breasts or ovaries or uterus.

Caitlin: [00:08:23] Having this information, what made you decide to get tested?

K: [00:08:28] I went to a gynecologist when I was 32. I'm 37 now, and it was my Year of Adulting. I decided I was going to go to all these doctors, you know, get up, get my life straightened out. And I went to a gynecologist for really my first pap smear at 32. I was terrified to go. Had never been. I just knew nothing about the process and was afraid. So I went to a doctor on 14th Street in New York and she asked me about my history, my family history of breast cancer. And I told her, well, my grandmother died of breast cancer around the age of 40. She was diagnosed at 38. My mom had breast cancer at 38 and my aunt had breast cancer at 38. And my doctor said, hey, that's a lot. You should probably go get tested. And at that point, I didn't know that anyone else in my family had been diagnosed with BRCA one. So it led me down this path of asking all my relatives about their medical history. And my mom wasn't so willing to talk about her history. But I did contact my aunt, who I hadn't spoken to in years. And she shared her paperwork with me that said the exact mutation she had. And she also had a bilateral mastectomy with reconstruction. And so I found that out, went to a counsellor with that information and kind of took it from there. I think I had three genetic counseling appointments where they did a blood draw so that they could test for the mutation. And they tested for every mutation that is known about for BRCA, not just the one that they thought that I might have.

Caitlin: [00:10:21] So when you found out that you had a BRCA mutation, what we're sort of your first reactions to that test?

K: [00:10:32] I am a pessimist, so I was pretty damn sure I could have it. You know, I thought to myself, every woman in my family basically has had breast cancer. And I thought, you know, I'm pretty doomed. So I walked in the morning of the test results and I sat in the waiting room and I remember hearing people go, "She's here. She's here", like in hushed tones. And then I heard someone say, do you have her health insurance information? And I was like, shit. And so I walked into the office and my doctor, she was a really wonderful elderly woman. She must have been 85 or 86 and still practicing medicine, which is amazing. I remember she opened up this folder and I could see this bold, like all caps lettering that said 'positive for a deleterious mutation'. And she said, let's just get right to it. And you do have BRCA one. And I don't think I had much of a reaction to that. I was sort of expecting it. But it was when she started saying, I'm sorry. I'm so, so sorry. That was when I sort of had like a moment, you know. It was hard to hear that she thought it was so terrible in a way.

Caitlin: [00:11:55] Of course. That's not that's not a nice thing to hear from anybody.

K: [00:11:59] Yeah.

Caitlin: [00:12:01] What options were presented to you in that moment to deal with the mutation?

K: [00:12:09] The genetic counselor gave me the names of several surgeons at NYU. She gave me the names of two different breast surgeons, two different gynecologic oncologists. I think I said that right. So, yeah, she gave me the names of several surgeons and phone numbers. And so then I called a bunch of different surgeons the following week. And, you know, the second breast surgeon that I called at NYU said you already called someone here. And I was like, oh, I didn't know I wasn't supposed to call both of you. I'm sorry. And that was it, really. She just gave me the names of surgeons and told me, you know, you can either go have surgery, like remove your breasts, remove your ovaries and fallopian tubes, or you can just monitor the situation and, you know, go for I think it was mammograms every six months and uterine ultrasounds every year or something like that. And then there was a blood test, the CA 125 blood test you can have for ovarian cancer, which they told me it really doesn't work very well. Like, it doesn't it doesn't necessarily tell you whether you're at an elevated risk. So it was either going through all these stressful tests all the time or starting the path toward surgery.

Caitlin: [00:13:39] Uterine cancer is so scary too because there isn't really a great or ovarian cancer. Sorry, there's not a great way of detecting it yet.

K: [00:13:48] Exactly.

Caitlin: [00:13:49] My great grandmother died of ovarian cancer that just was never seen or really caught. The same technology exists today.

K: [00:13:58] Yeah. Yeah. It really hasn't evolved. And that's such a problem.

Caitlin: [00:14:04] You elected to have a bilateral mastectomy and breast reconstruction and eventually a hysterectomy as well, which we will get to later on. Let's start with what a bilateral mastectomy is.

K: [00:14:28] Ok, so a bilateral mastectomy is removal of all of the breast tissue or as much as the surgeon can possibly take out. So it's basically opening up the breasts with an incision and removing as much as possible. They can't always get 100 percent. They never really know if there's little bits left, which is a little bit terrifying. But there are two different versions of this. There are nipple sparing mastectomies and non nipple sparing mastectomies. Nipple sparing mastectomies are a technology that was just recently developed. I believe up until sometime in the 90s, you basically had to get them removed. There was no way to keep them. And now they're able to do that. So that was an option for me. And that's the form that I went with. And if you do remove the nipples, there's also nipple reconstruction that you can elect to have. So I guess a side note on the nipple sparing mastectomy is that you cannot have it done if you are a smoker. So my first appointment with a plastic surgeon, my plastic surgeon said I will not do the surgery on you if you are still smoking. And I said, oh, OK. And it was very important to me to keep my nipples after the surgery. So I walked out of the office. I called my friend Heather. I talked to her on the phone for a while and I smoked my last cigarette and I flicked it into the street. And that was about five years ago. And I've never smoked a cigarette since.

Caitlin: [00:16:07] That is definitely a very special incentive.

K: [00:16:11] Yes, it was. Yeah. When people ask me how I quit smoking, I'm like, well, you know, I was going to lose my nipples. So it's a weird thing to say, but it's true.

Caitlin: [00:16:21] I'm curious why why you can't be a smoker in order to save the nipples.

K: [00:16:25] Basically, it's something about blood flow and smokers having a restricted blood flow. And so if they do this nipple sparing mastectomy and you're a smoker, you have a high chance of your nipples suffering from necrosis, which means that they rot off.

Caitlin: [00:16:43] Okay. Yeah. Yeah. That's something that doesn't sound like a great outcome.

K: [00:16:48] It's not great.

Caitlin: [00:16:50] I think you best just quit smoking.

K: [00:16:52] Yes.

Caitlin: [00:16:52] If you're going to go with that option.

K: [00:16:54] Yes, absolutely.

Caitlin: [00:16:56] So I understand that there are a number of potential options in terms of reconstruction and what's available to you. Can you detail some of what those are and what you chose or what was available to you?

K: [00:17:12] Yes. So there's basically two different types of reconstruction. There's reconstruction using your own tissue, sometimes called flap reconstruction. They're taking a chunk of something off of your thigh or off of your back. And there's all different types of flap reconstruction. There's something called deep flap, which I think is the back one. I didn't have that. So I don't quote me on that. And there's lap flap, which I believe is something where they take from your sides, I want to say, and reconstruct out of your own tissue. That's the more sort of, I guess, quote unquote natural version. And it feels more like real breasts. There's also implant reconstruction, which is what I opted for. And there's two different versions of that as well. You can have the implants placed immediately upon your first mastectomy surgery. So I think that's called direct to implant reconstruction. And then there is expander to implant reconstruction, which is what I was a better candidate for. I had very small breasts. And so to get an implant into my tissue, we had to go through a series of expansions. And I can talk a little bit about that, if that's interesting.

Caitlin: [00:18:25] Absolutely. I want to hear all about it.

K: [00:18:28] All right. So the expander surgery is basically right after your mastectomy, after they remove everything they place sort of a fake implant into both breasts. And it is filled with saline and it has a little magnet on it. And you go in once a month or something like that for appointments every few weeks maybe. And there is a special needle filled with saline and it has a magnet also, and it finds the magnet on your breast. And then you push the plunger and you fill the expander. They're called inflations.

Caitlin: [00:19:09] That is incredible.

K: [00:19:11] And so you go through, you know, depending on how large you would like to go. And you have a choice in that somewhat. You go for four, maybe five appointments like this where you expand the expanders and it's a little bit painful. It's very weird. It's a weird sensation. And I should say too, the bilateral mastectomy, it removes all sensation from your breasts. You don't have any feeling left in the skin or in your nipples. That's all gone. So really, when you're going for the expansions, you're just feeling a weird kind of pressure. You're not really feeling pain so much, but it's an odd sensation. And you do kind of, I guess, feel just the presence of something that wasn't there before.

Caitlin: [00:20:05] It must be so strange to feel that in your body and particularly not having nerve sensation on top of that.

K: [00:20:15] Yeah, it's, um, it's kind of wild. It's almost robotic in a way. I used to call them my fembot boobs. You know, I felt like a like a mutant, like I am I am a mutant, I guess. But, you know, it just it really drove that home. Like, there's this alien thing sitting on my chest. And I also, the expanders, they they poke out in weird ways. There's edges to them. And so I could feel these hard like corners and things in my breasts when I would touch them with my fingers. And I was very uncomfortable and it felt like rock sitting on my chest when I would try to sleep. And it was also just they looked like balloons, like they didn't look like breasts at all. And this was for about four or five months I was going through this expansion phase. And so I remember I had a bunch of my friends give me scarves because I was so self-conscious about what I looked like during this whole phase. And so I, you know, I told everyone the best thing you can do is like, send me a scarf, make me a scarf. Like, that's like all I need. I just want to cover up this whole area because it's so weird. And I remember I had, like, one nipple pointing up to the ceiling and one nipple pointing down to the floor for a while. And it was crazy. It looked so, so weird.

Caitlin: [00:21:44] When all of the expansion and your fembot boobs were ready to come out. What was that process like and what did you choose in place of that?

K: [00:21:55] I chose silicone implants. There were other options. There was what's called a gummy bear implant that's a little more solid and they're kind of shaped differently. My doctor thought that aesthetically the silicone implants would look better on me. So I went with that. I was like, you're the expert. You've seen so many boobs. I'm going to trust you. So the replacement surgery I remember was on December 1st. I have all these anniversaries now. So December 1st, I had the expanders removed and the implants placed. So they went in through the same incision. I have what are called in from mammary incisions underneath my breasts. They try to hide them in the fold underneath so that they're more aesthetically pleasing. And so they placed the implants several times during surgery. They sit you up, make sure you're looking sort of symmetrical, which I found fascinating, I think not something I thought about, but then I went home and, you know, more recovery from there, but less intensive recovery than the first surgery.

Caitlin: [00:23:05] When talking about breast reconstruction and implants, aesthetics seemed to be more of a factor in terms of what's considered for people who are actually getting this.

K: [00:23:17] Yeah, yeah. I think aesthetics are important. And, you know, I didn't think about it this way prior. But psychologically, the aesthetics are very important. And, you know, the doctors are really watching out for that, too. You know, my breasts do not feel real in any way, shape, or form. And that's a pretty shocking thing to deal with for a while. And they also don't really look or move like real breasts either. And the the psychological sort of management of that is a little bit difficult. It means that I don't necessarily feel as feminine as I used to. And I also, I warn, intimate partners before any clothes come off. You know, I feel like I have to say something so that it's not this moment of, oh, my God, what is this? And that's not something I ever had to think about before. So, yeah, the the aesthetics are so, so important. And even for people that don't choose reconstruction, you know, it's called going flat in the community. You can go flat and still feel uncomfortable with having gone flat. And what that looks like.

Caitlin: [00:24:41] You see some people who've gone flat sometimes with these incredible tattoos covering their chests. And just looking at that from an outside perspective, that seems like a really beautiful and sort of empowering thing to do.

K: [00:24:57] Yeah, there are a lot of Facebook groups for mastectomy tattoos and, you know, scar cover up tattoos. And it can be a really beautiful way to, you know, embrace the scars in a way and also camouflage them, if that's, you know, there's two different sorts of mindsets around that. I've definitely thought about getting my scars covered with a tattoo. They're not super obvious. So it's not urgent for me. And it's not something that that I felt deeply attached to. But, yeah, I love seeing there's some beautiful butterfly tattoos and floral things. And, yeah, I've seen a lot of really great ones.

Caitlin: [00:25:39] So you're 37 now and looks stunning, if I may say so.

K: [00:25:45] Thank you so much.

Caitlin: [00:25:48] How long ago now did you have the mastectomy?

K: [00:25:51] It was almost no, it was over five years ago now, 2014.

Caitlin: [00:25:57] So you've had some time to sort of live with your body.

K: [00:26:02] Yeah. There's been some time. And, you know, I would say it took probably a year to get used to physically the the feelings involved. And then, you know, it's still, you know, five years on an emotional journey. But I don't think that part will ever end. And then I have five more years before I have to get the implants replaced. So there's that to also look forward to.

Caitlin: [00:26:27] Yes, I've got friends with implants and they said that they have sort of expiration dates like anything else. So one of the things I'm noticing that's coming up a lot here is how much the the breasts and sort of these parts of a body is that we can elect to change or remove really have so much baggage tied up in them in, you know, how we think about our bodies and our gender and our self-worth. It's really so clearly an important piece of this puzzle for you.

K: [00:27:07] Yeah. And it's not something I had really anticipated. I thought about all the physical aspects of it. And then, you know, prior to surgery, I found myself just breaking down in the middle of a subway in the middle of a workday and not really understanding why I was so upset. But it's just it's really it's a big part of you. It's a big part of your body. And there's so many, I guess, societal expectations of what your breasts are supposed to be and and how they're viewed and all of that. You know, the magazine images you've seen since you were a kid, like coming back to haunt you and not helpful. Not helpful. Not good. So I think that was hard to deal with. Just, you know, thinking of what what I was going to look like and anticipating it not looking real. And then actually not looking real. It's it's weird. And I'm not upset that I opted for reconstruction. I think it was the right choice for me. But it is it's it's very... It feels like a fake piece of my body.

Caitlin: [00:28:25] Well, from the outside, I have to say, you look just like normal, Karen. I would not know that you had breast reconstruction implants or anything like that.

K: [00:28:35] I have D cups now.

Caitlin: [00:28:37] You know, every once in a while I wish for a D-cup.

K: [00:28:41] You know, I used to be an A. And I told them, fill them up.

Caitlin: [00:28:45] More power to you. More power to you.

K: [00:28:48] Not that I'm saying bigger breasts are better, but they're better for me. And I felt like, you know, if I'm gonna go through all of this trauma, I would like to fill out my clothing a little better than I thought that I did. So, you know, that's my little silver lining.

Caitlin: [00:29:04] So, Karen, most recently you had a hysterectomy. Is that correct?

K: [00:29:10] Yep, that's correct.

Caitlin: [00:29:12] What is a hysterectomy for those of us who don't know.

K: [00:29:14] A hysterectomy is when they remove your uterus.

Caitlin: [00:29:18] Just the uterus?

K: [00:29:18] Just the uterus. To my knowledge, yeah.

Caitlin: [00:29:24] I hear that there's you can get like sort of a partial hysterectomy where you remove just a piece of the uterus. Is that right?

K: [00:29:30] I think so. I don't know as much about that. But there are several different things that you can have removed down there. And they include, you know, you can have your ovaries removed. You can have your fallopian tubes removed. I also had my cervix removed and all of those have sort of different names to them. So what I had was a hysterectomy with a bi lateral salpingectomy and bi lateral oophorectomy, which means that I had everything down there gone.

Caitlin: [00:30:01] Oophorectomy is ovaries,

K: [00:30:03] Right.

Caitlin: [00:30:03] And Salpin...

K: [00:30:06] Salpingectomy

Caitlin: [00:30:09] Again, me with the big words. Yeah, that is that's the fallopian tubes, right?

K: [00:30:14] Yeah.

Caitlin: [00:30:15] So what what prompted you to decide to have this time?

K: [00:30:20] So I had always planned on having my tubes and ovaries removed. They do recommend that for folks with BRCA one, because, well, the tubes. There's a theory that ovarian cancer begins in the tubes. So they they recommend that at the very least, you have your fallopian tubes removed and then possibly the ovaries. If you're ready to say, you know, I'm done having kids or I don't want any kids. And you can also have your ovaries removed and, you know, harvest your eggs prior to that. And so you can you can do a variety of different things. I had always planned on having the fallopian tubes removed. I was kind of terrified of it in a way that I hadn't expected. I went through the mastectomy first and I felt good about that. But I had trouble letting go of my tubes and my ovaries. And I never wanted kids. I've never felt any maternal instinct whatsoever. But for some reason, that was mentally a bigger bridge to cross. What prompted me to actually have the surgery was that when I turned about I guess I was 35. Yeah, I think 35. I started having really painful periods and I thought I was just getting older and this was what happens. And I was waking up in pools of my own blood every morning for the first three days of my period. And I thought I was just doing something wrong. And I went months and months like this, almost a full year. And I was, you know, wearing multiple pads to bed and a tampon and still waking up in a pool of my own blood staining all my sheets. It was really embarrassing. And like, really draining. And I would have this pain where I could barely stand up. I would have to sit down. I would get winded. So I went to my gynecologic oncologist, who I had met several years prior when I was going through the breast surgeries. And I said, all right, I think now's the time. Like, if I get rid of these ovaries, can I, you know, will the period stop? Like, can I can I stop doing this? It's not fun.

Caitlin: [00:32:35] Sounds like torture.

K: [00:32:36] It sucks. It, I mean, fully sucks.

Caitlin: [00:32:38] It's amazing how we can normalize this stuff. You shouldn't have to wake up in a pool of your own.

K: [00:32:44] No, it's not right.

Caitlin: [00:32:46] It's not normal.

K: [00:32:47] It's not normal.

Caitlin: [00:32:50] Yeah.

K: [00:32:51] Like, if you're having, like, this severe pain every month, you know, it just it's there's a problem there. So I started researching it online and kind of thought maybe I have a fibroid and a fibroid is just usually a benign tumor that is either inside or outside of your uterus that causes all sorts of havoc and totally sucks. So I went to the doctor. I explained all of these symptoms. She sent me for some tests and one of them was an intrauterine ultrasound, which they stick like a wand into your vagina.

Caitlin: [00:33:28] And oh, yes, I am familiar.

K: [00:33:31]  Yeah. It's not it's not the greatest experience. And pretty uncomfortable. But for about half an hour, they're waving a wand up around inside of you and they're getting an image of that. And then I think I also had an MRI, if I remember right. And they determined that I did have a uterine fibroid. So from what everything that I read, I thought that if I got the ovaries out, I'm good. Period, stop. No more pain. And that is true. But my doctor did say we should take your uterus, too. And I said yikes. Like, I don't I'm not ready for that. And I don't know why I wasn't ready. Like I said, didn't want kids, didn't care. But that was a larger toll than I had expected. And so she told me that, you know, if you remove the uterus, you only have to take one hormone. If you go on hormone replacement therapy instead of two. So I said, OK, that makes sense. And I don't want to be taking a bunch of drugs all the time. So with the uterus removed, I could just go on to estrogen, which is a little patch which I hadn't expected. I thought I would be taking pills, but instead I put on a little patch twice a week. And it sticks to my abdomen and I have to move it from side to side. So it's not the same place every time.

Caitlin: [00:34:56] It's like a smoker's patch.

K: [00:34:58] Yeah. But yes, itty bitty. It's clear they try to hide it. It is attached with the most bad ass adhesive you've ever imagined in your life. It's so hard to scrub this shit off. So sometimes when I get lazy, I'll just have multiple like marks where you can see it's like a Band-Aid got ripped off because you're, like, so tired of scrubbing my abdomen. It's so weird. Twice a week ritual.

Caitlin: [00:35:28] I mean, a self care moment, but a weird one.

K: [00:35:31] Yeah. And I found that the best way to take it off is with nail polish remover.

Caitlin: [00:35:36] Fantastic.

K: [00:35:37] Yeah. Yeah. Really good.

Caitlin: [00:35:39] I feel like I've taken Band-Aid gunk off with nail polish remover.

K: [00:35:42] Yeah. So if I didn't have this patch, basically I would have gone into menopause immediately after surgery. And, you know, I talked to my doctor about that option to not going on hormone replacement and because I have a history of depression. She recommended that I not do that because it would really, really start immediately. So I had a my friend came with me to the hospital and she was my advocate there for this surgery. And she made sure that they gave me that patch as soon as possible. My doctor had recommended that I get it put on during surgery even. Wow. Does it. It starts that immediately.

Caitlin: [00:36:19] I didn't know that. That's incredible.

K: [00:36:20] Yeah. I had no idea either. The other thing I didn't know about prior to this was that I asked my doctor, you know, am I going to keep my cervix? Because I had read that sometimes they remove it. And I wasn't sure why. And I didn't know if it was because of risk of cancer in the cervix, et cetera. But my doctor said, yes, I would like to remove your cervix. Are you okay with that? And then I said, why? Why would you remove that? And it's so that they can remove the uterus through your vagina. So I literally birthed my own vagina and birthed my own uterus. Gave birth to my uterus.

Caitlin: [00:36:57] Who can say that, right?

K: [00:36:59] Yeah. I had no idea that was a thing. I also asked my doctor because I'm very medically curious if she could take a photo of my uterus and my ovaries. And if I could see it after. And so she said, yeah. Just remind me, remind the medical assistants before you go under. And so I did. I was like, someone's taken a photo. Right? This is happening. And so I got to see it after. And my uterus was enormous. And she even commented, you know, you have a very large, you had a very large uterus. That was, I think, 11 inches tall or something crazy. And I guess they're usually about nine for an adult.

Caitlin: [00:37:36] I had no idea they were that tall.

K: [00:37:38] It was huge.

Caitlin: [00:37:39] It's like up to your belly button.

K: [00:37:41] Yeah, it was enormous. 11 inches. And it was it was I remember it was shiny and pink and like, just fake looking. It didn't. I was like that was inside me. That's crazy. And she showed it to me on her phone at a follow up appointment. And it was just fascinating. And then I asked, you know, where's the fuckin fibroid? Where is that bastard? And, you know, so she pointed that out, too, and you could barely see it. It was so small, but it was causing me hell.

Caitlin: [00:38:08] It's amazing how little things can wreak havoc.

K: [00:38:10] Yes. Yes. It's crazy.

Caitlin: [00:38:14] I know that you've done a lot of research about this. And when you started doing research for your hysterectomy and all of the other words that I'm not going to say right now because it's just too goddamn much. Where did you go to find information?

K: [00:38:31] Most of my information, oddly, has come from Facebook support groups. There are a lot of really great ones. The thing that I've had to be careful for in those is there are a lot of horror stories and the hysterectomy support groups aren't necessarily BRCA focused. So it's folks getting uterus removed for a variety of reasons. A lot of them just simply didn't apply to me. And I talked to my doctor and she said, you know, don't worry about those things. Here are the things that you need to worry about specifically. And, you know, she mentioned lack of sex drive after surgery and things of that nature, but nothing really mechanical happening, which was what I was worried about after.

Caitlin: [00:39:09] Ok. I was going to ask you what the side effects of the hysterectomy were and like what you've experienced, what have you experienced?

K: [00:39:23] I mean, obviously after surgery of any kind there's typically pain. So I had a little bit of that. I was out of work for about a week and a half to two weeks. I should say I had a laparoscopic hysterectomy, which is less invasive. There is still a form of hysterectomy where you have an incision that goes the entire width of your abdomen almost. And that's a much more serious, much more painful surgery than what I had. So I had some pain. Psychologically, a little bit of depression, a little bit of anxiety after. But I've been fortunate in that I haven't experienced any physical side effects so far. You know, the the only ones that my doctor really mentioned to watch out for were pain after sex and things of that nature, but nothing so far.

Caitlin: [00:40:15] And laparoscopic surgery is when they make little incisions.

K: [00:40:20] Yeah, there's tiny incisions for this surgery. They went in, they did five incisions. There are two on each side of my abdomen. And then they go in through the belly button with a camera. So I didn't even know about that incision until after the surgery. I felt like my belly button was a little crusty and I was like, what happened here? And my doctor was like, that's where the camera goes in. And I was like, What?

Caitlin: [00:40:47] I had a laparoscopic surgery and they did the exact same thing. And I said, What is that crusty feeling?

K: [00:40:52] Oh, no, no, no. Why don't they tell you?

Caitlin: [00:40:56] I don't know. It would have been nice.

K: [00:40:59] Yes. I had no idea. Yeah. I remember that, like, chunk of scab came out in the shower one day. And I think what, they don't tell you some things.

Caitlin: [00:41:11] And you had to ask too, about your cervix being taken, it wasn't elected information.

K: [00:41:17] No, they didn't tell me that. And, you know, there are several things that I was never really told about for the mastectomy as well, including that, you know, silicone implants don't keep their don't keep your body temperature. So my boobs are cold all the time. I don't feel it in my boobs, but when my arm brushes one, I feel that it's cold and it's a weird sensation that no one thought to warn me about. And it was very disturbing to me. There's actually a company that makes special bras for the situation that are lined with neoprene that are kind of fantastic. And I. Yeah. So that no one told me and. Oh, the other thing. My nipples are erect 24/7 for the past five years and there's nothing I can do about it.

Caitlin: [00:42:07] Oh wow.

K: [00:42:08] No one told me that. My doctors just said, oh you'll be able to go without a bra. Like it'll be great. And I can't. I could.

Caitlin: [00:42:16] Sure. Yeah.

K: [00:42:17] I could choose to do that. But I would, you know, I'm at attention 24/7. Not a comfortable thing to show people.

Caitlin: [00:42:25] I understand that feeling. I feel the same way. I have...Ali Wong said in her last special, I think it was that her nipples like you could spin a C.D.. And I feel like I have those! Yes, I understand that is that is wild. So when you touch your breasts like they're, they're cool to the title of the touch.

K: [00:42:48] Yeah.

Caitlin: [00:42:48] I'm glad that people are making bras for...

K: [00:42:53]  Yes. So, this is just recent. The company that I purchased from is called Infinite Beauty They just started maybe a year ago in Connecticut. And so I was able to talk to the shop owner directly and, you know, tell her what I was looking for. And she was like, oh, we don't make, you know, 34 D yet, but we're working on it. And so the first run of them that she had, she sent me one. And, you know, it was really great. It worked. I was skeptical because I was like, you know, what is this gonna do? This is a lot of silicone to keep warm. But, yeah, it's a thing. There's also, I should mention, the support group at NYU Medical Center. They have a really good monthly support group that's run by a therapist. I went, you know, pretty religiously for about a year. And it's a diverse group of women. And, you know, women who've had cancer and women who haven't had cancer and talking about all these sorts of issues in person, it's been really great.

Caitlin: [00:43:56] Do you think that's something that exists in other places? You know, we're privileged here in New York in a lot of ways because the medical community is so large. But I hope that that would exist in lots of places.

K: [00:44:10] It does, but to my knowledge, it's harder to find. And even the group in New York sometimes doesn't meet because not enough people RSVP. It's been canceled. I think the last eight months.

Caitlin: [00:44:22] Oh, wow.

K: [00:44:23] It's a very small group. And, you know, it's people kind of rotate in and out. If you're feeling like you need support, that's when you go. And, you know, I haven't gone in probably two or three years, but it was really instrumental in figuring out my path forward.

Caitlin: [00:44:39] It's great that it's there when you need it.

K: [00:44:42] Yeah.

Caitlin: [00:44:42] And it's great that you have you found an online community that's been helpful for you?

K: [00:44:47] Yeah, definitely.

Caitlin: [00:44:49] I have to ask, just in the world of U.S. health care, what was this like in terms of insurance coverage?

K: [00:45:00] It's been a really mixed bag. So for the mastectomy, I was working at a university and I had really great health coverage and surgeries were over two hundred thousand dollars altogether. And I really didn't pay a penny of that. What I was paying for was sort of recovery supplies, like I bought a recliner and, you know, I would take cabs back and forth everywhere because it was too painful to ride the subway. And then for the hysterectomy and all of the other surgery involved with that, I was hit with a 4K deductible the morning of surgery. Had to pay that immediately before going in. And then I thought, you know, I paid my deductible. I'm good. And then weeks later, I got a bill for two thousand dollars. So that surgery, I believe, was $14,000 total. And I'm on the hook for six thousand of it. So that really drained me. I wasn't expecting that, you know, wasn't really expecting to have to do this surgery. The fibroid kind of came up and forced it, so. So, yeah, it's been not great this past one. It was very vague what was covered. I was on the phone a lot with insurance agents and they couldn't really tell me. I had to get some kind of code for that type of surgery that my doctor was performing. And I, you know, it's a mess. It's a whole mess. They don't make it easy. And it's adding adding a layer of stress that shouldn't be there. When you're dealing with something so traumatic, it sucks.

Caitlin: [00:46:37] Of course, insurance is always an extra layer of bullshit.

K: [00:46:45] It is. It is. It's such. Yes. That's the word. It's utter bullshit.

Caitlin: [00:46:53] I'm curious if you would like to share any of the sort of work that you've done for yourself in terms of, like, what kinds of support you had from your sort of networks when you were going through this and what work you've done just on your own?

K: [00:47:13] Sure. So for the first mastectomy surgery, at first the only mastectomy surgery, you can only have that once. I had a I set up a go fund me account to fund my, you know, recovery supplies like the recliner I mentioned. People sort of recommend that you sleep in a recliner for the first month or so because it's more comfortable.So I started a go fund me that raised, I think, around two thousand dollars and that was enough to get me what I needed. And my friends were wonderful and created a dog walking calendar and they would come and do dog walking shifts. I have a 40 pound dog and there's no way I could have done that for a while. My good friend Masha came and washed my hair for me one day because I couldn't reach over my over my shoulders really for a long time. And I also threw a big party two days before surgery. It was the glitter goth mastectomy party and it was saying goodbye to my boobs. And I think about 40 ish people came out and dressed glitter goth and it was super fun. The only rule was that we couldn't talk about the surgery that was happening in two days. And I got plastered and we did karaoke and it was wonderful. And then, really, my friends have been my family through all of this. They know all of the gross details of everything. They've been there to medical appointments with me and been to my surgeries with me and all that sort of thing. So, if not for my friends, I would have, I don't know, it would have been so, so much harder. So I really have them to thank for a lot. And then aside from my friends, I've done support groups online and in person. There is the Gilda Radner Club in downtown New York that I've been to a couple of BRCA meetings there. And I guess aside from that, I haven't been to therapy, which is something that every good New Yorker and really everyone should do.

Caitlin: [00:49:23] I know it's it's our sport. Really.

K: [00:49:25] Yeah. Yeah. It's like a New York City pastime. I'm not making light of therapy. I shouldn't.

Caitlin: [00:49:32] But, I shouldn't, I shouldn't either. But there is sort of like everyone in New York sort of expects that.

K: [00:49:38] Yes, you're in a way that and other places in the country, we don't really talk about it. So I've never actually in my life done therapy and I should and I've been looking into it recently because as I get older, it feels more important. But so that might be a part of the process, you know, in the near future.

Caitlin: [00:49:57] Are you doing any, or are there any preventative measures that you are still taking going forward?

K: [00:50:05] Yeah, I still have breast exams, believe it or not. I still get felt up once a year. Just in case in case they forgot some minuscule amount of breast tissue in there. And I you know, I'm followed by my gynecologist pretty closely and I still have to get exams and things like that. But I don't have any specific diet. I really am not worried about cancer anymore, which is kind of magical.

Caitlin: [00:50:38] I mean, that that is really, it's huge.

K: [00:50:42] It is. It's huge because, you know, every woman in my family was diagnosed with breast cancer at the age of 38. And so at 32, when I started this process, I thought I was looking down the barrel of a gun. I was like, this is going to happen to me. Absolutely. And I need to get on top of this now before it's really a problem. So I feel really lucky.

Caitlin: [00:51:08] Well, I think that what you've done is incredibly brave. And one of the things that I've always admired about you is that when you're facing struggle, you share that struggle with other people. I think it's so brave to be vulnerable and to truly be seen by others and to ask for help even from the people that you love.

K: [00:51:38] Yeah. It's not been easy. Like, in the beginning, I was kind of embarrassed. You know, no one wants to need help. But when I started sort of sharing my story and, you know, telling more people about the details of it, people would start coming to me when they had questions later on. Or, you know, I had a few friends who confided in me that they, too, have BRCA mutations. And I would never have known if I hadn't gone on Facebook and said, hey, here's here's the shitty stuff I'm going through right now. Just want to keep you all in the loop about it. You know, if I'm a terrible friend right now, it's not because I don't love you. It's because I'm going through some shit. And people are really understanding. If you're willing to open up in that way and... Not that everyone has to, it's not for everybody. I'm very public about almost everything I go through. And I don't know how I got that way. I used to be incredibly shy. But I think, you know, through life in the theater world, I've become this other person where I can just say, yeah, you know what? I woke up in a pool of my own blood and here I am on a podcast talking about it.

Caitlin: [00:52:46] Well we know that you are not alone, not nearly. And I know that from you sharing, I've gained strength and felt less alone. And I've tried to put some more of that strength back out into the world for others. And I'm sure that others listening right now will feel the same.

K: [00:53:08] I, you know, that's my hope. And I think that's really kind of you to say and nice to hear. My hope is that anyone listening...You know, maybe this will generate more questions and, you know, hopefully it will make you feel a little less alone, especially if you're in one of these places, you know, where there aren't a lot of support groups or there's not a lot of great medical care and or if you're kind of, you know, still in the beginning processes of it, sort of my hope would be that you can see that you can come out of it and be a whole person and be happy. And, you know, move forward with life. And it's not it's going to be a process. But you can manage it and, and come through it. You know.

Caitlin: [00:53:57] Truer words never spoken. So as we're coming to the end of our time here, is there anything else that you would like to say before we finish up?

K: [00:54:10] Yeah, I guess one of the things we didn't really talk about that I think has been really interesting for me is I've talked to some of my trans friends about their experience with top surgery and with hysterectomy. And it's been kind of fascinating and it's been a way that I've gotten closer to them. The surgeries are different because the nature of why it's happening is different. But I've kind of developed a rapport with a few folks over that shared experience that I think has been really valuable. And so, you know, also, if you are someone who is considering top surgery or hysterectomy for other reasons, I'm hoping that maybe some of the information that we've covered might be also useful to you in some fashion.

Caitlin: [00:54:59] Fantastic. We are hoping to do a specific episode or two about surgeries for people who are trans. When you get top surgery as well as potentially hysterectomy is it's really important to include everybody in this, even though we are talking about the BRCA gene. Karen, thank you so much for being here on The Down There today. I just adore you and I'm so grateful that you have come in.

K: [00:55:30] Thank you for having me. This has been so great to get to share my experience. It's very just. It's great.

Caitlin: [00:55:42] Thank you for listening to my conversation with K. I hope you found as inspiring as I do. You can find K's woman-owned creative shop, All of the Things NYC on Instagram and AllofthethingsNYC.com or on Etsy to get some seriously fun wearable art. I'm wearing a pair of the life sized plastic shrimp earrings right now and they are just a total joy to wear and who couldn't use more joy in their lives. If you're looking for more information about hereditary cancers or ways to health, K recommends the FORCE Organization, which is an acronym for Facing Our Risk of Cancer Empowered. FORCE is a national nonprofit dedicated to improving the lives of individuals and families affected by hereditary breast, ovarian and related cancers. They have tons of great resources for pre-vivors and ways to donate or get involved. FORCE also holds an annual international conference where you can sponsor attendees. To learn more about FORCE, go to facingourrisk.org. The bra K mentioned, was designed by the founder of Infinite Strength, a nonprofit that provides financial grants to underserved and underinsured women with breast cancer. The bra was created specifically for those who suffer from chills and spasms after mastectomy to implant reconstruction and are now exclusively donated to patients through the nonprofit. For thermal bras designed for pre-vivors, you can check out Elemental Bra Company links to this and all other resources mentioned in our show notes. For the transcript of this episode or to send us an email, visit our Web site Thedowntherepodcast.com. We'd love to hear from you. Follow us on Instagram at TheDownTherePodcast where you can see pictures of Ke and her fabulous blue hair and me with those shrimp earrings. We also post fun little tidbits and information on coming episodes. Speaking of new episodes, Ke is returning to The Down There. This time in conversation with one of my chosen fam, Calvin, who identifies as queer and transmasculine. Ke and Calvin go really deep into the differences between top surgery and mastectomy, their histo-experiences, what it's like to live in a radically changing body and so much more. That conversation, my friends, is not to be missed. If you enjoyed this episode and want to hear more, go ahead and hit that subscribe button. Rate us on iTunes. Who doesn't love stars? We love stars and, you know, tell your friends. We release a new episode every month. The Down There is produced by myself, Caitlin Smith Rappoport and Molly Hennighausen. With music, sound design and editing by Kate Marvin and Graphic Design by Jean Kim Studio. Thanks for listening. We'll see you next time on The Down There.