Hereditary

Krystal with a K: What's up everybody? Welcome back to Plattwiss Still Alive! Bitches, we are officially in season two! We did it! Yes! I am so excited! I can't fucking believe there was an entire season with 41 episodes. If anyone knows how many you're supposed to have, please let me know because that seems like a lot, but who knows? I'm an extra bitch. That's how it goes. it is officially October, which means bam, bam, bam, it's breast cancer awareness month. And while it's amazing to bring awareness, it comes with a lot of feelings for people that have been diagnosed. I was also diagnosed with breast cancer in October, eight years ago, with my first breast cancer diagnosis. So it kind of stole my favorite month from me for a while because I'm into spooky shit, Halloween, all of the things. this month's gonna be a mix of both. We'll do breast cancer, but we'll also do some spooky shit, I promise. I wanted to bring on somebody. That I met through Instagram actually and through the breast cancer community. she is a huge advocate and such a great educator in regards to genetic cancer. and she actually has her own podcast. It's called Bracca and Beyond. So everybody say hello to the stunning, the beautiful, the talented Marissa. Hey girl, hey.
Marisa: the best introduction ever. Hey. My favorite. I'm gonna clip that. I'm gonna clip that and I'm just
Krystal with a K: Yeah, you're welcome. You gotta be a girls girl.
Marisa: gonna like put it in my do we do ring back tones anymore? Cause I wanna do that as like a ring back tone. Right?
Krystal with a K: You should j you should. Or like a morning mantra, just like play it for yourself. Boom.
Marisa: Right, but really I want other people to hear it. I want other people to be like,
Krystal with a K: Mm.
Marisa: You are now calling the fabulous, the wonderful, Marissa and like I pick up the phone, like, Hello.
Krystal with a K: Bitch say less. I'm gonna cut that and just send you the clip of this and you can have it for eternity. Use it for whatever you like.
Marisa: Love it, deal.
Krystal with a K: So Marissa, we did get a chance to talk I do know your story, which is incredible. that's coming from somebody who's had cancer three times. when I look at stories, when they astound me or I'm surprised or shocked, you know it's a good one. I say good loosely, very loosely. But I would love for you to start with what your life was BC, so before cancer, if you will, because most of us we have one of two. We are either just love our life and everything's amazing and then cancer comes along and fucks everything up and changes everything. Or there's people like me that life was not great. I had a lot of issues and cancer made me refocus on myself, on my health, on my family, all of the things. So which one were you?
Marisa: Well, first thank you for having me and l allowing me to share on your show. And to answer your question, it was I was in the category of screeching halt. Like, holy shit, are you sure? What the fuck? that's exactly how felt. I was 37. It was in summer of twenty twenty two. It's so funny how like when all of this stuff hits us, we're remember the exact dates, exact age, what we were wearing. it's just embedded and greened in our brain.
Krystal with a K: Well, it's a trauma and I think anyone that has a trauma,
Marisa: Yes.
Krystal with a K: it's it's ingrained in you. there's a before for a reason because it changes everything and you remember weird things.
Marisa: yeah. Yeah. It's that's it's that complete divide of like how you say like the B C and then if you will the AF we'll call it. I well I call it like after fuckery where it's other
Krystal with a K: A D After diagnosis?
Marisa: AF. Like
Krystal with a K: I'm gonna have to use that.
Marisa: Right? and we can say that as cancer survivors because it really is a what the fuck experience like throughout the whole entire thing, regardless of what your journey looks like, whether you have treatment or preventative surgeries You, at least from my experience, find yourself looking back at some point and go, What the fuck was that? Like
Krystal with a K: Well, you're not processing during because you're surviving during. And we can
Marisa: You can't. Yes.
Krystal with a K: use the term after loosely as well, because there are people that are stage four, metastatic, and they there's no after because they'll live the rest of their life. But there's an
Marisa: Or is no after. Yeah. Right.
Krystal with a K: after the words you have cancer. That's kind of what I mean versus like after you're
Marisa: Yes. Yeah.
Krystal with a K: done with it. Because you know better than anybody, especially with genetics, you're never really done with it. It's always a part of your life. So
Marisa: Yes.
Krystal with a K: so it came along, it fucked your shit up real good. It was your plot twist. Where
Marisa: Real good. Yes, it was.
Krystal with a K: you said you were thirty seven you were from up north, right? New York? Jersey, that's right.
Marisa: Yes. Yeah. New Jersey. Born and raised New York City, New Jersey. Kept going south. Now I'm in Florida. Yeah, my kids were three and five. I weaned my youngest from breastfeeding, a year prior to my symptoms. So when I was getting in gear of like getting my body back and working out doing all of the things to bounce back from babies, I started getting all these GI symptoms. And like a lot of women do, and men too, we kind of excuse it away. You know, it has to be hormones. Maybe it's because I'm working out more. I changed my diet. So it was all of these maybes because I mean, cancer in your 30s? What? No, you never. Like you're too young, right? And that was my mindset. And Eventually I started working with the dietitian thinking it was dietary. I I had bloating, I started experiencing some stomach pain. So naturally, in her function, she goes, okay, let's eliminate dairy, gluten, let's really see what the root problem is. And she had me go for a GI MAP test, which is a stool sample. that is done through usually a dietitian or a nutritionist of some sort. It's not really given so freely on, you know, like any MDs or anything. But it came back and it said that I had traces of blood in my stool. And I was like, are you sure? really? So now when that came back, it was a red flag for her and she's like, we should get you to a gastro. And now that I actually had that in print from a test, I, as grotesque as it is, started looking for it. And ever every time
Krystal with a K: You should
Marisa: I was like in the bathroom, I'm like literally head like in like trying to see like exactly. Right.
Krystal with a K: Examining your shit, just like what's in there?
Marisa: So I started to see it. And then a month went on and I started to see more of it. And when that happened, I was like, okay, that's not hormones. You know, that's not because I had a baby and I finished breastfeeding. went for a gastro colonoscopy and sure enough after I woke up and she came over to me and said, We removed three polyps and one was the largest that I've ever seen in any of my patients, including my seventy year old, seniors. And I'm like, is there is there an award for that? Like Yeah.
Krystal with a K: I hate when doctors when doctors say that, you know you're fucked. Like, hey, don't wanna alarm you, but I've never fucking seen this that bad. You're like,
Marisa: Yeah. Right.
Krystal with a K: great, super. I'm thirty seven, I have kids. Great.
Marisa: Yeah, right. I'm like, can we can we not do this? Like, I'm still in kind of twilight, and I'm like really hungry from the colonoscopy prep, and I've never been under it before in my life, and the anxiety is still, there. and as we all know, when it comes to cancer, you go for the initial tests, and then you're given the scary news, which I received in her office three days before Christmas. And now s sitting like while leaving her office, hysterical crying with a list of oncologists to go and see who can get me in around, you know, holidays and also copies of what my insides look like. what do I do with this now? So what I did is what any normal functioning mom does, and I sat in my basement hysterical crying, wrapping Christmas gifts, trying to give my three year old and five year old the most magical Christmas ever. And that was just
Krystal with a K: yeah, I mean, I I get that you still gotta be mom and you still gotta show up. And it doesn't matter if Christmas brought you cancer, you gotta be Santa. Wrap that shit
Marisa: Yeah. Right.
Krystal with a K: and put it in a box. obviously three and five is very, very young. mine were one and five the first time around. So conversations look very different at those ages. Who did you tell at first? And how did that all go?
Marisa: Yeah, my husband came with me to the appointment because it's a little bit of a timeline on December ninth. See how crazy, like we remember all these dates. it's insane. So
Krystal with a K: Wild.
Marisa: December ninth, I had the colonoscopy. And two weeks later, I remember it was on a Friday, and I'm sitting In my living room with my kids, we're watching a Christmas movie. My whole entire house is decked out with like all Christmas joy. And an alert comes on my phone and it's like 5 30 in the evening and it says, My patient portal, your results. now I know better. Before I was like, I need to know. So I open it up and I look and it had the medical jargon of cancer. And I was like, okay, I've seen that word before. And I just still threw it into Google to be sure. I know.
Krystal with a K: no, not Google Anything but Doctor Google.
Marisa: I know. I was very green. I had no idea. So I
Krystal with a K: No one warns you.
Marisa: no one warns me. So I threw it into Google and it was like, You have cancer, mortality rates, and I'm like, like freaking out. And now It's a Friday and it's five thirty and no one's in the office and no one can give me answers. So, yeah, sitting with that for the whole entire weekend. coincidentally I was seeing my childhood friends that weekend for our annual Christmas gathering, and I have a very dark sense of humor. Very few people really Yeah, I know. I know. Like that's why I'm here. Right.
Krystal with a K: Yeah, that's why you're here. That's why you were cordially invited.
Marisa: so I already had Christmas gifts for all of them and we've known each other since we were three and five. Like 'cause there's like five of us. So I already had this beautiful picture frame of us when we were little, a more recent picture, kind of side by side. And I remember Handing out the Christmas gifts and then saying to them, I really hope you cherish it because it may be the last Christmas gift you ever received from me.
Krystal with a K: Did had you told them yet or not?
Marisa: So I d I told them there, like 'cause they knew
Krystal with a K: That during that was the way Fuck Fuck
Marisa: and like they know me. So they were like, You're a fucking asshole. And I'm like, We know this, it's endearing, you love me. But also, it might be true. So it's like
Krystal with a K: Right.
Marisa: and You know, and then obviously got into because they knew that I was having symptoms. They knew that I had the colonoscopy. So it wasn't like a shock where I was keeping this this secret and this possibility. so I told them, I waited a little bit before I told my mom and my stepfather because my mom doesn't handle things but like she does, but in private I know she loses everything. So I'm like, just to protect Certain people.
Krystal with a K: Well and correct me if I'm wrong, but for me I didn't want to tell people until I had a plan. Like I needed to know what I was gonna do before I sounded the alarm for everybody. So was that that the same for you?
Marisa: for the extended, people who weren't in my intimate inner circle, yes, absolutely. the people who I told, obviously my husband, because he's kind of bringing me to these appointments, we're in it together. my best friends, that that group of girls, they knew that I was having symptoms. And when we went to this Christmas gathering, they were asking, did you get the results? what did they say? What's going on? I felt really guilty because they're literally family. They're my sisters. And like I felt guilty to be like, No, and meanwhile, the night before this came through the portal. So I did tell them, but I also said, Hey, listen, I don't have any answers yet. These are the steps that I have to take. I still even have to talk to my gastroentrinologist. I don't know, and nobody ever knows when we're given that, pathology report or that, scanner or biopsy exactly what stage it is until you go for everything else. while I'm joking and teasing of this like morbid reality, which is really only it's my way to cope. You know, it doesn't work for everybody. But
Krystal with a K: Same. Works for me.
Marisa: yeah, works works for me. And right.
Krystal with a K: works for me. I'm fine. You're fine. We're great.
Marisa: Right. And then if you don't like it, then you're not my people. Yeah.
Krystal with a K: You're not my people. You're just not my people if you don't get it. And that's okay. Don't listen to my podcast or be my friend.
Marisa: Yeah, exactly. And I'm okay with that because we find our people no matter where we go.
Krystal with a K: So you tell your friends in this morbid, dark way, but perfect
Marisa: Yeah. Yeah.
Krystal with a K: in my opinion. when do you actually go in and start getting all that? Because holidays sometimes you don't. Like it wait they wait till after. Was that the case for you or did they get you in?
Marisa: Yeah, no, so I was frantically calling every oncology office and and even like off the list of suggestions to be like, is anyone out there? can anyone help me and bring light to this? I was very fortunate that at the time my my husband worked in a very large healthcare system in New Jersey. So he was able to reach out to some of the directors of the departments that I needed. And I was able to get in it was like January sixth, seven, like around like the week after New Year's. you know how that goes, where like right away they're like, Okay, we're gonna send you for this blood work, and we're gonna send you in that machine and this machine, and then we're gonna do a full body, and then we're gonna do the CT scan with contrast, without contrast like all of these things that it was just a whole entire month of being poked and prodded. Yeah.
Krystal with a K: Tests. I think a lot of people don't realize that whenever you're getting diagnosed, they want answers and you're like, so do I. But they can't give you a treatment plan until they look at everything else first. And sometimes it's really hard. for me, the unknown was always the hardest part. I mean, hearing I had cancer was hard, but not knowing what the fuck we were gonna do and living in limbo, it's like hell to me. And it's scary
Marisa: Yes.
Krystal with a K: because you you are expecting everything to be I'm gonna die and it's gonna be the worst and what if I have to do chemo and what if I have to do this? it was it s the same for you?
Marisa: It was excruciating I didn't have an answer. So the people that I did tell, my inner circle is, well, what stage? I don't know. Well, what's the plan? I don't know. Well, what's your treatment? I don't know. Well, what are you gonna do? I don't know. Like I will keep you updated. And that was really difficult I found myself trying to manage my own feelings, my own emotions and my own form of processing and now trying to manage everyone else's, which was a shit show.
Krystal with a K: Yeah, because you're you're feeling like you have to almost hide how you feel when you're the one diagnosed to make sure
Marisa: Mm-hmm.
Krystal with a K: everyone else is okay. And it's not realistic. it's just an unrealistic thing to expect you who was just told you have cancer, have no fucking idea. And they're asking the same questions that you're thinking about nonstop. You can't sleep, you can't eat, you can barely function, and you're doing the best you can. And it's just consistently a reminder. I do want to say this. For people that are watching that are newly diagnosed or do get diagnosed with any type of cancer, I wish I knew this because I was 32 when I was diagnosed and I didn't know how to manage it either. I was doing the same thing as you. The best thing that you can do is tell your inner circle, but then delegate a person to be bothered with for it. Like if I could go back and give myself a few things, that would be one. I would have delegated somebody. Now, at the time I was single, I didn't really have anybody to delegate the first time around, but the second time around, when I lucky me, cancer three times when I had a husband, because I got married, I had a husband,
Marisa: Ha ha.
Krystal with a K: he was the one that I had giving information. I did have to prompt him because he's so like even keeled. And he's like, she's fine. It's not a big deal. I'm like, I'm not fine. So don't tell them I'm fine. Don't fucking say that. But
Marisa: Yeah.
Krystal with a K: I highly recommend picking somebody to delegate Who they trust with that information. So you're not the one getting all of those phone calls, getting bothered constantly. It's overwhelming and it's unrealistic to try to tell everybody.
Marisa: Yes, and that's a really good point. And I learned that after my second surgery, where I kept giving the phone to my husband, and I was like, Okay, you're the gatekeeper and you answer all of these people with the exception of two individuals. Two individuals call or text, you hand me the phone and I will call them, I will update them. that's how it was, listen, everyone who cares about us and loves us wants to know how we're doing, wants to know how to support us. And cancer and high risk are very strange things to navigate. There's no right way to to approach it. but everyone wants to help, they just don't know how. And sometimes that could be so overwhelming because it's like, thank you so much, but I really don't need another fucking blanket. It's like like with a pink right, right. Right.
Krystal with a K: With a pink ribbon on it. Don't forget the pink ribbon. Well, if it's breast cancer. So but you were dealing at this point with colon Colon cancer. Yeah. So
Marisa: yes. Yeah.
Krystal with a K: we haven't even gotten to the pink ribbons yet. Do you guys have a ribbon for the colon? What color?
Marisa: I don't know. You know what's funny is like I can't keep up with all the freaking ribbons. and we'll get into this. Like I'm high
Krystal with a K: There's over fifty.
Marisa: I'm high risk for six different cancers. So I'm like, just give me a fucking rainbow ribbon at this point. Like I'll just represent all of them because my body wants to kill me in various different ways. So whatever. Like I'm so special. Yeah.
Krystal with a K: You're also special. Isn't that exciting? So you get your plan of action after about a month of testing. You find out that you have colon cancer. What
Marisa: Yes.
Krystal with a K: was the plan of treatment basically for that?
Marisa: by the grace of God, we caught it so early that it was stage one and it did not spread. it did not go past the mucosis of the lining of the colon. So it was removed in its entirety. There was no treatment needed. we got it, we caught it. which is amazing, you know, it's very unheard of. since then had another relative who was diagnosed with colon cancer. So now we know that it runs in the family, whose journey was different than mine. And it c it made me come to the realization, like, my gosh, like how important is it for you to be aware of your body and what is different and abnormal and not to ignore it and don't sit there and be like, well, I'm too young or I'm too healthy and I eat organic and I eat grass and that's all I do. And like No, no no no no.
Krystal with a K: That shouldn't be in anyone's vernacular ever again. The idea that you can be I say this on almost every podcast if we're talking about breast cancer, not even medical professionals. There's no too young. I have met people that were twenty years old and had breast cancer. And you can also be a man and have breast cancer if you have breast tissue. it's happening to younger and younger people, people that haven't even had children. And I've noticed a lot of them just had children, including myself within a couple of years. You as well. there's all these new variants of of this disease. And I think you bringing up the colon thing, this is exactly why I wanted you to be on because this ended up leading you down the road to find out about breast cancer, right?
Marisa: Yes. So I received again with the dates, I received my NED, no evidence of disease, And it was end of February. So we were like, we need to celebrate. Like this is amazing. This is incredible. And then during all of those tests in the month of January into February, my oncologist had me go for genetic testing and genetic counseling. very naively, I'm sitting in the office with the genetic counselor, and they're putting up the chart and this family member and that family member and a family history of colon cancer, let's say for Lynch, syndrome. And I look at that and I'm like, no, there's no family history of colon. I'm the first one, it's just me. And then they're going on and saying, and there's BRCA one and there's BRCA two, there's other genetic mutations, pal V2, check, there's so many. And these are indicators and can give high risk of breast cancer, ovarian cancer, and pancreatic cancer and various others. And again, I'm sitting there like not applicable, whatever, just take my blood everyone wants it do what you have to do with it. I honestly forgot that I did genetic testing. I just checked it off the list of all the people that wanted a piece of me and was like not applicable. That was in my head. Like, no, I don't have this pattern of family history. And I receive a phone call. I was in the car getting decorations for my oldest son's birthday party. That was that weekend. Right? Perfect time.
Krystal with a K: You and fucking holidays. It's just like surprise.
Marisa: It doesn't matter. It's just kind of like, okay, fuck shit up as much as you want. Great. So I'm in the car and she said, it sounds like you're driving. You might want to pull over. And I'm like, Okay, but who's gonna pick me up from here? Because
Krystal with a K: Say Yeah.
Marisa: like I could pull over, but like who's driving me home from here?
Krystal with a K: Were you by yourself in the car?
Marisa: By myself. So I I take the call and she says, Okay, well, your results came back and you are positive for Brocket 2 gene mutation, and you also have a V U S variance of unsignificance in ATM. And I was like, Okay, so what does that mean for me? And she said, Well The gold standard and the recommendation is that you have a double mastectomy and you have a complete hysterectomy that will put you into surgical menopause like now all of these things and all of this language that I'm like preventative, propylactic, misectomy, oophorectomy, hysterectomy, like what are we why why how do we get into the world of ectomies? Like what are these things?
Krystal with a K: I just had this taken out. They said NED, that's that, right? No.
Marisa: Yes. Right.
Krystal with a K: That's such a mind fuck. that wasn't even on your radar at all. So to be thrown all of this medical jargon and not not even have breast cancer at like as a thought or or BRACA or any of those things. Okay,
Marisa: Yeah. No.
Krystal with a K: so h did you drive yourself home? How the fuck did you get home?
Marisa: I did. I mean, I I think that what
Krystal with a K: You cried in the car?
Marisa: I did well, you know what? I didn't cry in the car. I think that it was an immediate moment of disassociation, but also confusion and a little bit of anger because honestly when I hung up, I was like, This bitch is crazy. I'm like, why is she telling me to
Krystal with a K: Ain't no way.
Marisa: remove body parts?
Krystal with a K: Yeah, this is not this isn't for me. She got the wrong guy.
Marisa: Right, right. I was like, I don't think so. I remember h hanging up and I'm like, Well, are you gonna send me these results? And she said, Yes, it's already sent to your email. And I remember driving home, angry at her, and she's just the messenger. And I'm just like, She's insane. What school did she go to? Who did she I need to speak to her supervisor? it was bizarre to me because I just am now, you know, on the heels of this colon cancer diagnosis. Processing all of that, you mentioned before, where now when you're given that diagnosis, especially when you're with young kids, you're like, Am I gonna survive? What version of me are my kids gonna bear witness to? Am I going to be able to function at their birthday, at the next holiday? you have all of these thoughts in your head. And now I get the news about the BRCA too. And I'm like, I don't even know what to do with this. So as I'm driving, I'm like, I don't know what BRACA is. Genetic mutations are what? Like, you want me to remove all of these things and and then what? So it was more so confusion. And I remember when I was halfway home, I'm like, shit, I have to call my husband, right? Like, he should know that he married a mutant, right?
Krystal with a K: He might I might need to let him know that he married a mutant. I mean, yeah.
Marisa: Right? So, and that's that's more or less what I said to him. And I I called him and and I said, So I received my genetic test results back, and he goes, okay, so how did that go? I was like, Well, I just want you to be the first to know that I am genetically mutated and I'm basically fucked. And he's like, What do you mean? What does that mean? Like what and he he gets my humor, but he doesn't appreciate it as much as I wish he did. Like he gets mad sometimes. No.
Krystal with a K: They never do. That's not funny. Or they don't laugh and you're like, No, this is hilarious. It's super fucked, but it's it's someone should laugh at it.
Marisa: Right. So he's like, what does this mean? And I'm like, I don't know, but I think that it means I'm gonna be up until two in the morning on Google. Like figuring figuring out. Well, this is also
Krystal with a K: not the Google again.
Marisa: before like chat, really. Like
Krystal with a K: I mean, is that much better?
Marisa: It's not it's not much better, but at least with chat, like I've trained my chat and at least with chat I'm like, don't be mean, don't be scary. You know what I mean? Like you can direct them and be like, show me the good stuff and and like
Krystal with a K: Right. I need you to have this type of bedside manner for me. Side note,
Marisa: Right.
Krystal with a K: I'm gonna scroll for a second. I trained mine too, but it talks in my crystal plot twist all live, so a lot of fucks and like I don't give a shit and cancer and dark humor. I was using it recently to help with another unrelated fundraising event that I'm MCing and I helped create. And it's like a children's thing. It's not it's not plot twist shit. I didn't even read it. I just made a flyer. I sent it to my friend whose organization it is. She's like, This is really great, but could we please maybe remove like fuck cancer and I don't give a shit? And I'm like, Yes, yes, we can. I'm so sorry.
Marisa: Yes we can.
Krystal with a K: So I have to tell it to calm the fuck down and use like
Marisa: Right.
Krystal with a K: G rated language now. So
Marisa: is hilarious. But yeah, I mean I I think that my chat would have been really beneficial to kind of sugarcoat everything that I was finding. And and because I had no idea what this meant, very complimentary to Google are the Facebook support groups. I do not recommend either.
Krystal with a K: no. no, not those. They're not
Marisa: Yeah. And
Krystal with a K: there's nothing wrong with them for some people, but there
Marisa: No. Mm mm. Right.
Krystal with a K: are a lot more that are very negative and or there's a lot of like almost comparison or like this is my experience and it was horrific. And so especially
Marisa: Right.
Krystal with a K: newly going into it, you just have to be very cognizant of what you thrive with. If you don't thrive with negativity, you can't
Marisa: Exactly.
Krystal with a K: be in a group like that.
Marisa: Right. And then also what I noticed too is that people who have a not so great experience in anything that we're talking about in life, it's human nature to try to number one, share it, but also number two, find someone who says, yeah, me too, or yeah, something similar. And that goes tenfold with the support groups because That's what it's meant for. It's meant for support. So people who may not have had the best experience or may not be happy with reconstruction or certain choices that they've made will go there and be like, here's a picture of what I'm unhappy about. And that can be helpful for them. That's what they need. But when, like how you said, you're so new going into it and you're like, what do I have to expect? And now you're met with these worst case scenarios, you're like, I'm I'm I'm fucked. Like that's that's it. Yes.
Krystal with a K: There's no hope. It really destroys your hope or seeing the light at the end of the cancer tunnel for sure. And that again,
Marisa: Yep. Yep.
Krystal with a K: I love that we're already like making points. Anybody, and this is for people that will be diagnosed. I hate that so many people, one and eight, are diagnosed, but to be able to have conversations and say, I wish I would have known this, picking your support system is vital to this. And you do
Marisa: Yes.
Krystal with a K: need people that have gone through it for sure. But pick the right people to be in your circle. You don't need a ton of breesties. You just need like one or two that fought the same monster as you and you can discuss it with them. But for
Marisa: Yeah. Right.
Krystal with a K: me, I tried to join one and it it didn't work for me. I actually did better with a local nonprofit and we helped create a support group that talked about all the things, but it was more like, all right, we have cancer, what the fuck do we do with this? Like what
Marisa: Right.
Krystal with a K: else? What are the things that we can talk about that we all relate to and all get? But then how do we deal with that in a positive
Marisa: Yeah.
Krystal with a K: way? Because It again, mental is a huge part of this. And I think people often forget that like negativity, like you said, it it might be their way. And I'm not judging it. everyone has their own way of coping. I just think for me, I couldn't grow in that and having no hope, like that that would have fucked me up really bad. So so you're
Marisa: Yeah, same.
Krystal with a K: looking at all this shit, you're getting more and more afraid, feeling like you're fucked. How long does it take you to actually talk to somebody, a medical professional, to give you like the legitimate statistics and what your case looked like?
Marisa: I found that out in March. I sat with that news until about May. yeah,
Krystal with a K: Two months.
Marisa: yeah, yeah, yeah. So I was I was really confused about everything and what this looked like and what this meant. And for context, my father passed away fourteen years ago, we're going on fifteen years of pancreatic cancer. Now he was jo he was not tested. He what he didn't have genetic testing. They didn't really do it that yeah, it wasn't
Krystal with a K: Was it really a thing? Yeah.
Marisa: really. so he he was not tested, to my knowledge. I mean, I would honestly love to pull his medical records to see out of curiosity, but They kind of chalked it up to his exposure to Agent Orange, because he was a Vietnam vet. And that was it. You know, it was like kind of like closed case and putting the dots and and all the puzzle pieces together. Now I've come to the realization that it came from my father's side. But I
Krystal with a K: Wow.
Marisa: didn't have a relationship with my father's side of the family. There was like one cousin that I spoke to, and there are like 14 cousins in total. And this, my journey, prompted me to reach out to other cousins, to be like, okay, hey. I just need know family history. Like, if we don't ever talk again, that's fine. But like my father's deceased. I can't ask him. My mom's not really that familiar with more than just like my grandparents. does anyone have any information that I can just throw on my medical chart and, you know, put everything together to make it make sense? And that being said, I needed to collect that information first and then process everything. And this is a whole another can of worms, but you know, when you're given cancer diagnosis, hereditary cancer news, you know, high risk, it can bring up a lot of traumatic family issues and a lot of things that like you buried or you thought you healed from, and now you're like rehashing all of these things and say, okay, well, that makes sense because of my dad. That makes sense because of my grandmother. all of these different things while also now reliving these tumultuous, not so great relationships with these people. so that's what was so layered that had me thinking all these things.
Krystal with a K: Well, and that's difficult in itself you tell people you love and that's one thing that are involved, but having to call people that you don't have a relationship with, and I say that because I had the first time I was diagnosed, I wasn't speaking to one side of my family. I wasn't speaking to
Marisa: Yeah.
Krystal with a K: my parents. And there was things that happened and there was reasons. But I wasn't ready to talk to them for eight months until I was ready, and I wasn't ready to fix it until I knew that like there had been enough changes. I wasn't gonna change because of cancer. And I had a whole side of a family not talk to me. people are like, life's too short. I'm like, I have this much sanity left. I can't
Marisa: Yeah.
Krystal with a K: waste my energy and time on people that are not there for me and would only come around because I had cancer to be there for me. So I'm sorry, but no, I need to worry about and focus on myself. So for you, you almost had to do that. I can't imagine the mental and emotional just like draining that that had on you.
Marisa: It was. I mean, it was it was really it was a lot of things that were just uncovered. And my my father and I had a good relationship at the end of his life, but throughout it was very, very, touch and go is very difficult. So even that to uncover all of that and be like, you know, the guilt behind that and I wish I spent more time and had more conversations and maybe we could have worked through it. It's like Bringing up all of that stuff, and I know, and I've I've spoken to so many people in this space where their family dynamics are quite similar. So processing our own risk or our own diagnosis on top of now, uncovering and digging really deep into these unhealed parts of us that we didn't even realize weren't fully healed is a whole extra layer on top of all of it. like how I said my my father passed of pancreatic cancer. So it was just like, I wish he knew and what happened if he did know. Would he be able to be screened or like all of these different questions and it took it took a a while to process. I couldn't steer away from the fact where I'm like, well, no one in my family has been affected by breast cancer or ovarian cancer. So maybe like I'm the lucky one. Like maybe it's me, I don't have it either. So it's all of these things that you try to rationalize while trying to process when really it's like the most irrational way to make sense of it. so fast forward to May and I was Given access, I don't even know how. I was given access to this wonderful breast surgeon, Dr. Lisa Port at Mount Psy and I in Manhattan. And she's one of the top breast surgeons in the country. Like people actually fly out to be under her care. my husband actually called them up and said, This is my wife's situation. And they said, Okay, we'll see you next week. We have a cancellation. And we drove into Manhattan and she sat down, she looked at my chart, she examined me, we sat, we we looked at my chart. and and also backing up really quick, I did go for a a mammography. Yes.
Krystal with a K: I was about to ask because was that your first one you ever had?
Marisa: It was. It was. So it was my first mammography ever. And they found an abnormality. They found calcifications. And they didn't like how it looked. and this was not at Dr. Port's office. This was through my gynecologist. And they wanted to send me for additional imaging and for an ultrasound. So I went for that. And they still were like, don't really like what we're seeing here. Also, you have really dense breast breast tissue. So I said, Okay, what now? And their bedside matter was really crappy at this hospital, but they treated like conveyor belts, kind of feel. And
Krystal with a K: Unfortunately that's like very common in
Marisa: Yes.
Krystal with a K: oncology included, they see so many people. But again, I'm gonna say this too. They work for you and if you feel like that, you
Marisa: Yes.
Krystal with a K: need to get a new fucking doctor, fire those doctors and go
Marisa: Yes.
Krystal with a K: somewhere else.
Marisa: Yep. And that's exactly what I did. It made they made me feel very like next. Okay, boom, boom, boom. Next. And I was like, okay, I'm a person. Like this is your job. This is your everyday, but this is my body. this isn't my nine to five. this is normal for you guys, but it's it's really rocking my world. Yeah.
Krystal with a K: It's your whole life. It's your entire fucking life. And you have to put it in the hands of these people. And if they treat you like a fucking number, they're not the one for you. So you
Marisa: No.
Krystal with a K: went and you found this surgeon. So you didn't necessarily have like a plan of action yet for all of those tests that you had done.
Marisa: Yeah.
Krystal with a K: But she could access these and she looked at these when you went.
Marisa: Yes. So I I remember leaving that one not so great experience. and they already scheduled me for a biopsy and they picked the day and the time and I'm like, Well, I don't know if I can get childcare and they're like, Well, this is the only time we have. I'm like, Okay, cool. like no flexibility, nothing. I remember keeping that appointment and then the very next day calling and and canceling because I'm like, this is already traumatic. I'm not going to go in there and be treated like a piece of meat on top of it. Like that's horrific. and then that's when my husband was like, Well, we have to do something because we can't just sit around and be like, We don't know the extent of it. And he looked up top breast surgeons in Manhattan because he's like, We are only an hour and twenty minutes outside of the city. Why would we not? take advantage of some of the best healthcare systems in the country. and I'm so happy that he did. So now I'm sitting in Dr. Port's office and she has the imaging and she has all the results and one thing that she said to me that just sticks with me she's like, Marissa, you already had colon cancer at a very early age and you caught it in time. That might not be the case for these cancers that you're a high risk for going forward and you have upwards of an eighty five percent chance of breast cancer and you are already seeing abnormalities in your breasts. And I went, Okay. So I was just like
Krystal with a K: And you knew nothing before about BRCA, and I'm gonna fa fast forward to the part that you do, because you do know a lot, more than you probably ever thought you would know about it.
Marisa: Mm.
Krystal with a K: But very, very loosely, I will just say whenever you are BRCA, and there's BRCA one, BRCA two, like you said, but then all these others that people don't necessarily mention that cause other types of cancers that are kind of looked over or dismissed somewhat, but Your chances are anywhere from 50% to like you said, 85, 90%, depending
Marisa: Mm-hmm.
Krystal with a K: on several things. But this is like a flip of a coin for some people. But for other people like yourself, it's almost like you're going to get it. When are you going to get it? And the prophylactic aspect of it, right? The prophylactic aspect for people that don't have breast cancer yet is that you may do the double mastectomy and not have to worry about chemo or irradiation. You might give yourself a better chance of not having that or have it occur at all. But That's still a very hard decision to make, I have so much respect for people that are pre-vivors because they preemptively decide before they ever hear you have cancer, I'm gonna cut my breasts off. And that is when you have cancer, you're like, I'm gonna die. I have to I have to. But
Marisa: Right.
Krystal with a K: it's a different thing. And I also hate that a lot of pre-vivors don't feel like they have a seat at this table. And they absolutely have a fucking seat at this table. If I knew if I had genetic, which I do not, I would do the same exact thing. And I commend anybody that does that. Like, just so you know, all our previvors, you have a seat at the breast cancer table. Sorry, I had to get on my soapbox.
Marisa: Yeah, no, and I I appreciate that because that's something that a lot of pre-vivors struggle with too. I'm really glad that you that you brought that up because it's something that I have been kind of like grappling with internally in as far as like sharing. so I'm gonna share it here first. So it's a very
Krystal with a K: my gosh, I can't wait.
Marisa: it's an exclusive, no. so it's like right
Krystal with a K: Pom pum praum pram pum Exclusive from Plot Twist Still Alive First Marissa, the beautiful, baddest of bitches. She's gonna tell us a secret. Go.
Marisa: I can't. but yeah, it's it's a very strange place to be in. Stage one cancer, all cancers, right? So there's a lot of like how you said with breast cancer. Sometimes if you're stage one, if you're stage zero, you're still considered a s a survivor, but it can look different. You know, you may not have to go for radiation or chemo or any type of interventions aside from mastectomy. And like that would be it. colon cancer, it was stage one colon cancer. I didn't have to go for any type of interventions or treatment after, but it's still stamped all over my medical chart. that's what I'm identified as every time I go into a doctor's office, like cancer survivor. I didn't feel that way for the longest time because I'm like, I didn't earn that. I didn't earn that title. And then same for pre-vivor. And I'm like, and who the hell knows what a pre-vivor is unless you become one or you're in the cancer space.
Krystal with a K: They don't.
Marisa: Right? They don't.
Krystal with a K: They don't know.
Marisa: So now people are like, You're a previous. I'm like, what else? What the fuck else am I? It's like, I'm high risk. I'm the right I'm like, what
Krystal with a K: You become labels. Yeah.
Marisa: like what is this now? Is this gonna kill me too? So I was then told, no, you're a part of the previous community. I'm like, Well, I don't know what that what that is. And I didn't identify with that either. So now it was like this very strange space. And I know I'm not the only one because I've spoken with other women about this, where I'm a cancer survivor, right? Like that's what's on my medical chart. That's what people are are saying to me. And we did remove cancer, but I didn't have treatment. Now I'm this previvor because I have a predisposition to a cancer that I didn't receive a diagnosis for, and that's by definition what a previous is. And I had the surgeries to reduce my risk. But I'm like, okay, I guess. But then it's such a misunderstood and not well known community. So I can go over there and tell someone, hi, nice to meet you. I'm Marissa. I'm a previvor. And they're gonna be like, is that your pronouns? Like, what does that mean? Like, you know what I mean? Like they're
Krystal with a K: Not in the breast cancer community, yes. the last few years and I think that you play a huge role in this. Social media plays a huge role in it. There's finally
Marisa: Yes.
Krystal with a K: space for pre-vivors to talk about
Marisa: Yes.
Krystal with a K: this. again, same with men, men that are diagnosed with breast cancer. I'm even bad about it. I worked for a breast cancer nonprofit for four years. And I would always say, she or women. And it's like, hey, there are men that have breast cancer. And we did get a couple yes, it's a much smaller percentage, but they still fucking count. And how shitty is it that you hear the words you have cancer or you have to do the surgeries that someone that has breast cancer did and still have to live with the idea that it might come back. And statistically, one in three for people that are diagnosed with breast cancer out of the one in eight, and it's like you feel invalidated still. And like you're not
Marisa: Yes.
Krystal with a K: As cancery as the cancer people. It's fucked up.
Marisa: Yes. Yes. No, you're you're a hundred percent right. And that's part of why I feel the need to really start sharing too, because I I went to a summit last weekend and someone did a pre-vivor survivorship presentation. one of her slides, which I I'm gonna be sharing, said survivorship starts the day of diagnosis. And that's before treatment. That's before a plan. That's before anything. And she was explaining so eloquently, Jessica McIntyre in Sylvester University of Miami Cancer Center. she was saying you are a survivor the second that you receive the diagnosis. Why? And it doesn't matter what your treatment looks like, because now from this moment for the rest of your life, you are going to be in treatment, depending on obviously stage, if it's metastatic, whatever the the case is. Or always trying to stay one step ahead of it. And that is survivorship. It doesn't matter what it looks like and what stage every single person is going to have that same psychological warfare. Is it back? Am I healthy? Did it show up somewhere else? Is there a recurrence and that never goes away?
Krystal with a K: I agree with all of that. that is absolutely true. And again, I have been diagnosed three separate times, twice with breast cancer, once with childhood cancer, but I cannot imagine ever having to feel like that. But I've even had people that are friends of mine that didn't have to do radiation or chemo and they have survivor's guilt. And I just want to say this, I've never met a survivor or a thriver or a pre-viver that didn't have some form survivor's guilt. For me, it's my friends that have stage four or friends that die from stage four metastatic. And I'm like,
Marisa: Mm. Mm-hmm.
Krystal with a K: why them and not me? What's different? all of us deal with it. And even for stage four, they're like, why did my friend die from this disease?
Marisa: Yes.
Krystal with a K: I don't think any of us get out of this without the survivors guilt. that being said, you should never have to validate your previouship at all, in my opinion. And if people don't like it, they can go fuck themselves.
Marisa: Right. I agree. I'll send them to you.
Krystal with a K: Send them to me. Send me them, please. I'm already calling out trolls, it's fine. So Thanks. It's exhausting,
Marisa: Yeah, it's I I love that so much, by the way. Like hilarious. Love it.
Krystal with a K: honestly. These people are crazy. I'm like, can I
Marisa: They are.
Krystal with a K: just be a woman with opinions and like exist? No, absolutely not. They don't like that.
Marisa: No no how dare you how dare you?
Krystal with a K: But trauma makes me funny, so yeah. Good luck. Anyway.
Marisa: Yeah. Right.
Krystal with a K: So back to you, Marissa, because I squirreled again. we got on our pre-viver platform, but truly I do think it needs to be said. that's why I love having these conversations. you find out that you have an 85% chance and a preventative double mastectomy is the best option. Did you already have biopsy results at this point?
Marisa: I was really kind of going back and forth between surveillance and the mastectomy, because when you're a previous, you have that option. You can go either route. And really surveillance is more or less to t to monitor you while you buy yourself some time because the gold standard is double mastectomy to reduce the risk to less than five percent for breast cancer. I knew in my heart I didn't want to go the surveillance route because I was already given this need to go every two years for a colonoscopy and an endoscope because side note, as if that all wasn't enough, they also found precancer in my stomach. So yeah, I'm just a a mutant, I told you. So I was like, I can't
Krystal with a K: It's not even a cool one. Like you can't fucking read minds or move shit like Magneto.
Marisa: Nice.
Krystal with a K: Like you are just like, my body keeps trying to kill me. But guess what? I don't die yet. It's great.
Marisa: Right. I mean I do have a cool party trick where if you put the flashlight to your implants they glow. Yeah, cool party trick. So at least they get that.
Krystal with a K: That's right. I found that out s several years ago, but it is. It's a fun little party trick. Hooray!
Marisa: Yeah
Krystal with a K: They don't glow on their own, unfortunately.
Marisa: imagine sticking LED lights and just like right.
Krystal with a K: having like a glow party, we should that should be a thing. if you do a breast cancer like party, wrap
Marisa: gosh.
Krystal with a K: in glow lights and you don't e some of us don't even have nipples. Or if we do, you can wear your little stickies, little teetas. Tita's yeah.
Marisa: Right? Amazing. I love it. And then we can live stream and build a whole bunch of money for breast cancer research.
Krystal with a K: I mean I think that's borderline only fan
Marisa: Not if it's not if it's with good intentions. Not if it's with good intentions and a good cause. No. Yes.
Krystal with a K: Everyone likes weird shit. Right. If we're not sexualizing it, I think it's fine. But we should be raising money with our glowing breasts.
Marisa: Yeah.
Krystal with a K: Yeah. Anyway, I'll come up with it. I'll make a theme. We'll make it happen. I guess. Florida's the best
Marisa: I'll show up. Sounds good.
Krystal with a K: place though, which is where you live now. we could do that out on the beach or on a yacht. Okay. Anyway, we digress.
Marisa: Nothing.
Krystal with a K: We got big plans, bitch. So you end up deciding instead of surveillance, which just is basically
Marisa: Yes.
Krystal with a K: you're under a microscope, still waiting, and again, eighty five
Marisa: Later.
Krystal with a K: percent is just hanging over your head this whole time. You already have cancerous cells and two other parts of your body. So you decide
Marisa: Right. Yeah.
Krystal with a K: to do the prophylactic double mastectomy.
Marisa: So I did. it didn't come easy a decision like that would never come easy. I was just like, universe, God, higher power. I want a smack in your face kind of sign where I'm like, this is the path I need to take. I couldn't grapple with deciding either way. So long story short, my son went to speech therapy, every Monday, four o'clock. She gives us a call, she's like, Can you come early? I'm like, Yeah, fine, we're not doing anything. So we come at twelve. And a woman walks into the waiting room and she's clearly battling something. She has a scarf on her head, no hair, and a mask over her face. I'm already in a conversation with another parent about the summer. She goes, Well, my summer plans are different because I have stage three breast cancer and I have to get a double mastectomy next month. She also said that she was high risk and she was going every six months, alternating MRI mammography. She had extremely dense breasts and they didn't catch it. And I was like, okay, I have been slapped. I get it. And if that
Krystal with a K: Bam. Yeah.
Marisa: wasn't enough, I get into my car after my son finished his his speech therapy. I get into my car and I get a phone call from my breast surgeon. Hey Marissa, I just want to let you know your biopsy came back clear. And if you want to go forward with a double massectomy, we can get you scheduled. And I was like, okay, okay. And I'm like, all right, that's what
Krystal with a K: You know,
Marisa: needs to be done.
Krystal with a K: if you pay attention to those signs, I believe in that. I believe that intuition and asking for those signs, if you're open to them, they will come to you. And I'm so grateful, like I'm getting chills talking to you about it. I'm so grateful you had that clarity come to you like that in that moment because you fucking needed that. Because 85%,
Marisa: Yes. yeah.
Krystal with a K: sis, like, I get the grappling, but that's so fucking scary.
Marisa: Yes. I really I have to give credit to my breast surgeon too for giving me that wording really helped. I'm originally from New York City. So when someone curses at me and tells me like in a very demeaning way to do something, it's so endearing and it feels like home. So not saying that she cursed me out and she said anything like that, but But she when she sat me down and she goes, Okay, I'm gonna be completely honest with you, I have people flying from every single end of this country to see me and my expertise, and you're the one sitting in my office. So not to sound like a New York snob, but you are very lucky to be here. And if you want me to if you want to be in my care, you need to do what I tell you to do. And the next step was the biopsy. And I was just like, my gosh, I love you.
Krystal with a K: Yes, ma'am. Yeah. This is where I'm supposed to be. Tell me what to do. I would love for you to send me on top of that anything that might have helped you through this, send me that information. I always like to give people resources on the blog any facts you have about the Braca, Braca One, Bracca Two, or places to find that as well, so that people can educate themselves versus using Doctor Google or Doctor Claude or Chat.
Marisa: I I'll send you all those. Yeah, all the guidelines and stuff. Yeah.
Krystal with a K: Yes, I will I'll put all of that on there. Okay. you get the clarity. God's like, psh hey, get your shit together,
Marisa: Right.
Krystal with a K: sister. And so you're like, Yes, I will schedule. how quickly did that double mastectomy happen? And did you do a nipple sparing or was it the entire breast?
Marisa: Yeah, so when I met with my plastic surgeon and they he gave me this huge booklet, deep flap and nipple sparing over the muscle, under the muscle, and you're like again, all of this vocabulary that I'm like, dude, my gosh, just take them and just make them look better. I like to tease all the time where I'm like, My breast surgeon made the mess and my plastic surgeon cleaned it up. So like that's how I looked at everything. I'm like, she's gonna do all of the, you know fuckery just make it look aesthetically okay again. So for me, and I know this is different for everyone, I had the opportunity to do a nipple sparing. And I felt for my own mental health, I was like, I don't know if I would be able to handle looking in the mirror and not recognizing something of like familiarity, just to see something. And again, I was thrown well, also I
Krystal with a K: It's a mind fuck, let me tell you. It really is.
Marisa: was I was thrown into all of this in a very quick and urgent way where I didn't know that there was tattooing available. I didn't know where I didn't know that there were options that you can reconstruct the nipple I didn't know these things. So when my plastic surgeon was like, okay, we can do nipple sparing, I was like, okay, that sounds good. But in order to do that, because I had my pregnancies back to back and I was breastfeeding like really for five years straight, everything looked very tired and very sad and very saggy.
Krystal with a K: The
Marisa: So you're right. It was
Krystal with a K: hmm, just a little droop.
Marisa: just like little little stacks of pancakes. I said to him, okay, well, what do we have to do? And he said we'd have to do one surgery at the front end and do a lift and a reduction in preparation for the double mastectomy. So I saw the plastic surgeon and the breast surgeon in May, and I was scheduled for the lift and reduction in June. first surgery ever. I've never been under the knife. I've never been under anesthesia. Like the most ever was the colonoscopy procedure. that was it. I didn't know what to expect. I didn't know what to do or how to even really prep for it. And then same as the massectomy, I had drains in for the lift and reduction. I had six weeks of of restrictions.
Krystal with a K: Yes. You can't lift your kids. You can't hug your kids.
Marisa: It was you can't do anything.
Krystal with a K: You don't want them hanging off your drains. My son did that at one. Not fun.
Marisa: Awesome.
Krystal with a K: By the way, drains are the worst thing on the planet. Like they should be
Marisa: Worst.
Krystal with a K: torture devices for people because they're fucking bad. Like murderers should get them. Just like fuck you. Here you go. That's part of
Marisa: Yeah. Yeah, right. Right. That's part of your sentence. Yeah.
Krystal with a K: your son. It's four drains hanging out of various parts of your body. Enjoy that.
Marisa: Yeah. No, it was it was so uncomfortable. it was a form of of torture. And anyone who's listening, my biggest recommendation, especially if you have little kids with you, is the massectomy pillow, the one that actually clips around you. my biggest thing I still get emotional about is my fear was like, am I going to feel my children hug me? 'Cause like You know, like and you're told that you lose sensation in your breasts and in your chest and you can get some back, or it can be completely numb. And not only your breast, which I found out later on, but also parts of your side in your bra line and it goes straight to your back. If right. So weird. Yes. Yes.
Krystal with a K: Yep. Where if they take lymph nodes too. Yeah, it's so weird. The fa even phantom pain, it's wild. And it doesn't go away. Like it sometimes lessens, but I am eight years out and still have weird numbness and tingling in my left arm. And on my one side that I've had cancer, I still get shooting pains more than I do the other one. It's so strange. And I've had a double mastectomy. And then another
Marisa: Yeah.
Krystal with a K: weird little mastectomy. But it's just It's crazy how nerves work, how your body works. And it also is a mind fuck because when you have those pains or numbness or weird sensations, you're like, Is it cancer? Is it cancer? And
Marisa: Yes. my gosh. Like that happened to me like literally two weeks ago where I was having stomach pain and I was like, my gosh, the colon cancer is back. This is it. what did I do? I immediately went on my patient portal and messaged my oncologist and was like, Hey, so I wanna schedule another colonoscopy ahead of time. And he's like, Why? I'm like, I I I have pain. Well, did it last? No, it didn't, but do do what I tell you to. Like Get me in immediately. And they said yes. Yep.
Krystal with a K: And they said, Yes. Yes. that is the standard for your doctor. That's the same with my oncologist. She's incredible. I went to her recently because I had a lump. And of course that freaks me the fuck out. Like I did a deep flap. I'm laying down. I can visually see it. And I'm like, this is scary. And so I went to her and I said, I need you to feel this. And she goes, It feels kind of like it could be a cyst or something. That's common with deep flap. But I'll go ahead and order a mammogram anyway and an ultrasound. I didn't have to fight. I already feel paranoid all of the time. And she just allowed me to feel it and then did what I asked And guess what? It was nothing. I actually had several and they basically chalked it up to fat necrosis in several spots. But I'm like,
Marisa: Yep. thank God. Yeah.
Krystal with a K: Even going to do a mammogram now is fucking triggering. I started crying when they were doing it and I felt so embarrassed because I'm like, this poor lady is just doing her job But I go in there, I'm the youngest person in there, waiting to get their mammogram, and
Marisa: Always. Always.
Krystal with a K: I'm 40 now. I'm not that fucking young. But it's just
Marisa: Sure.
Krystal with a K: all of that floods back. Like I said, the trauma, it's still it's like PTSD, basically.
Marisa: Yes,
Krystal with a K: the last time I had a mammogram was when I was diagnosed. So I just start crying
Marisa: Yeah.
Krystal with a K: and I'm like, I'm so sorry. I've just had breast cancer twice and cancer three times and I'm and I'm explaining to this woman. So as pulled together as I act like I am and how I always talk about breast cancer, I'm a fucking human being too. And shit like that happens to you. Like you don't
Marisa: Yes.
Krystal with a K: leave it behind. And previvors go through it too.
Marisa: No, and it's it's a it's absolutely PTSD. to your point where it's like the PTSD, where you are like, you're here, but you're not really here, you know, like you're kind of like off in space somewhere and you're so hyper aware of all the all the different things. And then entering these. Cancer centers or these breast centers, being the youngest person in the room always, like we take note of that. so I had to go for my oncology appointment to establish my care with him by myself. My husband was working. So I'm in this brand new facility. Brand new doctor, and I'll share a really funny story just to give an example of how like your brain is just like not really braining. I'm shaking, because again, the PTSD. I'm sitting in the in the waiting room and I'm like visibly shaking and I'm looking at all of the people who are in active treatment and they're going in and out. And I'm like, don't cry, don't cry, don't cry. I'm very empathic and I see other people's journeys. And in my head, I'm like, that's someone's mom. That's someone's grandfather. I just get super emotional about it. So I'm like head down. They call my name. I go into the back, speak to the doctor, he's lovely. They're like, okay, go to the front desk, and now you're going to schedule whatever various appointments I need. So I'm walking down the same hallway and I go to push the door, and the door doesn't open. And I'm already shaking, I'm already sweating. So the p the door doesn't open. And I'm like, and I'm looking around, I'm like, I know I went, I came in this way. I know I came in this way. So I'm pushing, I step back and it says push button to exit. I'm like, the fuck is the button? There's no button. now I'm like this and I feel like I'm trapped. Now I'm starting to like claustrophobic because it's a narrow hallway. There's no one there to help me. And I see a button to the side. I push the button. I turned all of the lights off in the whole hallway and part of the offices.
Krystal with a K: my god, how embarrassing But they couldn't see
Marisa: And
Krystal with a K: you, so it was fine because the fucking lights were off. my god.
Marisa: Right. Nobody's sitting like I'm like crawling on the floor, like wasn't me. But I'm like, holy shit, wrong button. I hit the button again and I'm like, my God, my god, my god. The button to exit is on the left wall in back of me. So if I'm facing the door, it's behind my left shoulder on the wall. And I'm like, you guys are assholes. I hit it and I ran. I didn't even
Krystal with a K: my god.
Marisa: make the appointments. I was like, I'll call you later.
Krystal with a K: B bye. I'll call. Don't call me. I'll call you. Well,
Marisa: Right.
Krystal with a K: I think the other thing that's really hard on top of being the youngest person is the sheer amount of people that are in an oncology office at all hours. I've had appointments at
Marisa: Yes.
Krystal with a K: every single time of day it that you could think of. And the sheer amount of people that have cancer is just overwhelming. And a lot of them that are sick as shit are giving you looks of pity. out of everybody, they all have cancer and I'm getting the pity. That's another level because you didn't even want that from regular people, the the cancer muggles, and you're getting it from the cancer people. It's it's a weird
Marisa: Right. Right.
Krystal with a K: fucking feeling.
Marisa: It's so it's so strange. there's a close relative of mine too where it's like whenever they would complain, they're like, I had to get like a root canal. But you've been through worse. Who am I complaining to? I'm like, what? Like that's not helpful.
Krystal with a K: Yeah. Like they're not allowed to have a hard time because you've had surgeries and cancers and are a pre-viver. If I had a pull string, but it's like they always say that comparison is the thief of joy, but I say it's the thief of validation because cancer is a trump card.
Marisa: Mm.
Krystal with a K: people compare and so they feel like they can't tell you shit and you're like For the love of God, tell me about your life so I can stop focusing on my dumb shit. Because if you're comparing
Marisa: Wait.
Krystal with a K: to my cancer, it's not a fucking competition. And you're allowed to have a fucked up day or have a tooth pulled and be in pain or have a divorce and be super sad and have it be the hardest thing ever. there's room for that. I don't know. I just
Marisa: There's room for everything.
Krystal with a K: yes, and we're human beings. I'm not that person that would ever be like, well, I had cancer, you shouldn't complain. Unless someone's being an asshole, but I rarely
Marisa: No. Well
Krystal with a K: have that happen.
Marisa: I mean I've done that like again back to the morbid sense of humor where it's like I've done that to my best friends where they're like, my gosh, I'm having the worst day. I'm like, Yeah, I had cancer And they're like I
Krystal with a K: Right.
Marisa: mean obviously we laugh about it, that's another part of just coping mechanisms too, where everyone functions, everyone processes everything differently. And mine is like to joke about it. Is it a laughing matter? No. I had really, really Deep dark spirals where I'm sitting in the dark in my lift chair, the drains suck, I can't move. in the dark, sobbing. And I'm like, is this forever? Am I going to be this depressed forever? Am I going to look normal again? Am I going to feel okay in my body again? I've always had body dysmorphia. Am I going to always have that? Am I going to accept it a little bit more? all of these things are running in your head, but like my Process is like, I have to find first of all the silver lining in in it, and part of the silver lining is the podcast that I created to fulfill that space for anyone else who needs it. And right.
Krystal with a K: Same. Same.
Marisa: And then, and also the sense of humor because it is so serious. so many people look at it like how you said, pity, I feel so bad. And it's like, no, no, no, no, no, you don't. You don't have to feel bad for me. I made my decisions. I'm going through everything. I monitored more than any forty year old that I know of, I do it all the time and my friends laugh about it now, one one of my friends, she just had her second baby. They're close in age, just like my two boys and She goes, I have to ask you, like, does it get easier? This is really, really tough. Like, I'm having a difficult time. I don't know what to do. And I remember telling her, Well, I mean, having two babies under two is difficult, but on a scale of one to double massectomy, I'm like, you're at like a 10. You're good. just things like that where you find your way to cope. Like all of this is very serious. It's very heavy. It's very hard. Find your people. Find your process and and just find your way out of this dark
Krystal with a K: The dark.
Marisa: hole that we all really fall into. I mean, it's inevitable.
Krystal with a K: I feel like you have to hit a rock bottom. almost everybody does it. I've known just a few that maybe haven't. But all of our rock bottoms look different, like you said. And
Marisa: Hmm. Yes.
Krystal with a K: it is Part of the process because that means you're actually understanding this is life altering. I have cancer. This is a serious thing. And you are allowed to feel both things. We're human. You're allowed to cry and be in the fucking pity party, VIP, party of one, wear the same fucking pajama pants for three days, and then simultaneously be like, haha, I look like a testicle because I'm going through chemo, or look at my glow tits, you know, like you're allowed to do that.
Marisa: Right. there is that duality that can happen, where you can be grateful that you were able to show up and get ahead of the fight, that you were able to do something preventatively, but then you can still grieve what it cost you. and we're talking about Misectomies, but in a lot of other circumstances, and I haven't gone to that point yet, but it can be complete hysterectomies, that's a cost that's that's very heavy and puts you into surgical menopause. And then in some situations, and we're seeing this pre-vivorship experience happen in younger and younger women and men. That now they are at a crossroads of their own fertility and family planning. So you can be grateful that you have this information and you have this knowledge about your genetics and your risk, but then you can also grieve the cost So it's it's a lot.
Krystal with a K: I don't know many people that are ever the same after this. Again, it truly is like a BC and you don't have to be the person you were before. That's the thing. It's like you can be somebody different. And also you get to pick who that person is. When there's so many other uncontrollable aspects of your life, you don't get to decide if cancer comes back or all these other things. But you do get to decide what you do with the life that you have in front of you. on top of fertility, on top of all these other things, you also have the genetics. So you have to think about your children and your children's children. And that comes with the Heavy, heavy burden as well of feeling guilty and feeling worried about that. that is something that I'm sure weighs heavy on you.
Marisa: Yes, no, it does. And it's you know, it's one of those things where in in terms of genetics, they have a fifty-fifty chance of getting the genetic mutation. And I have two boys. So each of them have a fifty-fifty chance of getting the Brock 2 G mutation. And part of why I am so vocal about it, aside from just it being my life mission now after this, to help as many people as possible to be a light at the end of a very dark and lonely at times tunnel. But also to be that example for my children when they're old enough to recognize that example and say, okay, if hypothetically speaking, one of them, has the genetic mutation, they could say, Okay, well, I know that mom has the information, it makes it way less scary. They won't have the same experience that I had. You know, and and that's yes. Yes, yeah. And
Krystal with a K: The unknown part, you've taken the unknown part of it. That's beautiful.
Marisa: and hopefully by the time they're of age to actually test, we're looking at like possible vaccinations at this point, you know?
Krystal with a K: I fucking hope so. With all the money put into cancer research, it would be really great. And all the stage four friends that I have, it would be fucking fantastic to have a cure for this. So let's do it, guys. I don't know who I'm talking to, but somebody. Some of these fucking scientists, let's go. Anyone? Bueller? Bueller?
Marisa: Yeah. Yeah. Anyone. Yeah, universe, God, like anyone.
Krystal with a K: So You know, you have the double mastectomy, now you have all of this knowledge. three years you've been dealing with this where are you at, with all of those things that have happened what have you done with that? You've how have you given this thing purpose?
Marisa: it's definitely a form of toxic positivity, but in the best and nicest way possible. my whole entire life I've always tried to reframe. And aside from everything that I went through, I there was other trauma and stuff like that growing up that was always my go to where I'm like, okay, yeah, that sucked but trying to find the reframe of it and This was no difference. it was just trying to make a message out of my mess. there's not a reason other than me experiencing this and somehow, somehow helping other people because obviously I'm okay with talking about it, and being a very open book when it comes to my experience and my whole journey. So very early on, I started sharing on Instagram. Just little stories, little snippets. during the process. So I was never really active more than just, here are my kids, look at how cute. And I remember sitting in one of the many, many doctors' appointments and handing my husband my phone. And I said, Can you just take some pictures and some video? And he's like, Why? And I'm like, I don't know. And I really didn't at the time. I was like, I don't know. I was like, but I just feel like this is something that has to be captured. looking back, I have come to the realization now that a part of it was out of fear. And I might get emotional, but it's like out of fear where I'm like, document it because I might not be here. And that was like where my head went. And now I'm so grateful that he did because I did start sharing those little snippets of my journey and posting it. There was so many people who were like, What symptoms did you have? What is genetic testing? What is braca? my family had this family history. Should I talk to my doctor? there were people like former coworkers, high school friends, and I'm like, my gosh, okay, well, these people are in the same boat as me. They don't know. They're not being told that this is. A reality, like it can be someone's reality. the really big thing that sealed the deal, I was at a wedding of a mutual friend, and someone came running up to me, that I went to high school with, And she gave me a big hug, and I'm like, she's happy to see me. Like, how great. You're so sweet. And She goes, I just want to say thank you so much because I was watching your stories and you prompted me to go and ask my doctor for a mammogram and they found an abnormality and I went to go get it checked, and it wound up being pre cancer. And she's like, I would have never gone because I didn't feel anything, but it was just something that you said, something that I saw. And I said, You know what? Let me see if they'll let me go early. And they did. and again, we're in our thirties, so I'm like, we need to have these conversations. And now my husband will kill me if I don't give him credit. But he was actually the one that said I should start a podcast. He's never listened to a podcast before in his life. He still has not. Not even mine. But
Krystal with a K: It's right, my husband barely listens. I forced him to be a guest when I had nobody else and he's like, Are we done with that now? I'm like, Yeah, I think I know enough people now, it's fine. You're good. You're off the hook.
Marisa: You know what? He is the hardest person for me to get to guest on my show. And I ask him almost every single night. I'm like, can we just go up to the studio and just record? He's I'm tired. I'm too tired. So anyway, I digress. So he asked me during one of my five surgeries. he's like, What can I do for you? Like, how can I support you? Meanwhile, this man was doing Everything. He was my chauffeur. He was taking care of our kids. He was cooking for me. He was cleaning. He made a whole Thanksgiving spread after my mastectomy. I couldn't ask anything. He's amazing.
Krystal with a K: I love this for you. I love this for you.
Marisa: Amazing. Like I couldn't have asked for anything else, but he knew that I was in a funk. And I said, I don't know. I said, I really wish that I was just able to peer in the window of someone else's house and just see what they went through, what their inner thoughts were, I don't know if I'm alone in this, if this is normal, I know nothing. So at that point he goes, Well then why don't you create it? Why don't you create that window for other people to peer into? Why don't you just create a podcast? And I was like, I don't know. It's like I don't think so. Like no one wants to hear me yap all day. And then I did and it turns out people want to hear me yap. And I am So happy that I did. I just celebrated the one-year anniversary in August. So thank Yeah.
Krystal with a K: Congratulations. That's amazing. Mine's coming up October twenty first, Yeah.
Marisa: congratulations to you too. And like look at the impact that we're having too on so many people.
Krystal with a K: I was about to say, do you know how many people I have connected with? the human experience of connection, I want to meet as many people people as I can in other places, travel, see them, just do whatever we can. And if I'm adding something positive, like I might be a bitch about some things, but I also just love sending out positivity and helping people. That fills my fucking cup.
Marisa: Yeah.
Krystal with a K: That makes me happy. And you seem like the same type of person I do want to acknowledge that you said, it might be called toxic positivity that you like reframe. I think it's a healthy coping mechanism because you can choose to be miserable, to let this thing define you and break you down on a regular basis. And I think people that do that have a valid reason. But I also
Marisa: Mm-hmm.
Krystal with a K: don't think that's a life worth living. you are choosing every day to be happy. It's a choice. Make no mistake.
Marisa: And listen, I have bad days. Right. So how many times like I have a recording to do, like for a series or something that I I'm putting out. And I'm like, you know what? I don't feel like it today I'm in my feels and I am not, happy to even like exist right now because I have a test coming up that I'm freaking out about or I have an appointment that I have to do. I'm in my morning feels, or how I briefly mentioned like body image dysmorphia. Like I that's a real thing. I still struggle with that. And now living in Florida, like you have to wear like the least amount of clothing
Krystal with a K: yeah.
Marisa: as possible. So it's like and right
Krystal with a K: And the hottest of all people. Like Florida and San Diego, just fucking models. Hot. But you are very hot. You belong there.
Marisa: Yeah.
Krystal with a K: Just for the record. Glowy tits and all. You belong there.
Marisa: I know, right? so I it's just one of those things where you have the bad days and you're allowed the bad days and it really comes down to like how you said allowing yourself to feel both and you're allowed to feel happy on certain days and you're allowed to be like, hey, you know what? What I went through was really, really, really hard, but you didn't go through it for nothing, you went through the treatment, why? Because you still want to exist on the other side of it. You still want to live life. You you're not ready to to leave. and even if you're in the middle of treatment, it's difficult, it's hard, it's shitty, it's side effects, but give yourself the life that you deserve on the other side of it. Give yourself the life that you are fighting for. And then at at some point it does become a choice of like, am I gonna wake up in a bad mood today or am I gonna wake up in a better mood today? And I mean message message me. Like I'll give you as much toxic positivity as you want. Like I will be your ultimate hypewoman. Like whatever you
Krystal with a K: It's different coming from someone who's fought the same monster. You're allowed to stand there and tell me shit gets hard To me, it's toxic positivity when it's someone on the outside of the club trying to tell me how I'm supposed
Marisa: Yeah.
Krystal with a K: to be grateful or happy. Bitch, you can't even get into this club. You don't have
Marisa: Right.
Krystal with a K: VIP access. You don't have the cancer card. You don't get to tell me that I'm supposed to be okay. It's the same with grief cancer is just another grieving process. And if you've lost someone you love, it's all familiar. You start seeing the connections, like you said, about
Marisa: Yes.
Krystal with a K: traumas too, right? You start seeing the familiarity and how you cope with them and how you feel. You've learned how to deal with hard things because of the other hard things you've gone through. I will take quote toxic positivity from someone who's walked the walk. It's hard
Marisa: Mm.
Krystal with a K: when it's someone on the outside who's never endured it. Telling you, it'll be okay. At least you got a free boob job. Hey, at least you look
Marisa: Well
Krystal with a K: good, bald. No, I don't want to fucking be bald. I might have wanted a boob job, but I would never want it with all the mental warfare that comes along with this shit. that isn't toxic positivity, in my opinion. I think that
Marisa: Mm-hmm.
Krystal with a K: you are choosing joy, you are choosing reframing, and I think it gives people hope. And there's nothing wrong with
Marisa: Thank you.
Krystal with a K: that. That's fucking awesome. But I bet you're also one of those people that feels people out. Like where are we at? Because if you just need to cry and let that shit out, then let it out. And you're allowed and I will validate the fuck out of you little hidey hole. So because again, right.
Marisa: Yeah. And I've done that for so many people. so many people where they were like, I regret the decision that I made and I feel like my life is spiraling out of control. I don't know who I am anymore. I don't feel like a woman and I hate everything. This just happened just last month. she was not too far out from her double massectomy. And I held that space for her. And I'm like, listen, I get it. This is a huge change. This sucks. Who the hell wants to go through this? Who wants to have this as their reality? This is hard. And and what you're feeling, absolutely a hundred percent right. And stay there as long as you need to stay there. But no, that's not a place to set up camp, but it's not a place to live. I tease all the time where I'm like, I've met some of the most amazing human beings in the survivor, pre-vivor community. I just think that we need to change the initiation of the membership. That really sucks. Like to be initiated into this club is not so great. But like once you're in, It's it's honestly the best community ever. There are events that I've gone to complete strangers, like off of the internet, where we're running at each other like slow-mo into each other's arms. And it's like the biggest embrace. I embrace these women squeeze them harder than some of my family members. And it's just that type of community, that type of love and that type of understanding not even comparable to anything that I've ever experienced before.
Krystal with a K: So you've gained a lot of beautiful people from this shitty thing. Cancer takes so much. you get to take from it too. You get to choose what you take from it. And I absolutely think out of all of it, that is one of the biggest things is the community that I have now. And I love that you are having the same If you feel lonely, if you don't know who to talk to, we're your girls. Come check us out. Come talk to us. I'm just so happy we met through this community. I'm so happy that you were able to share this story and now a resource for any of my BRCA people. I'm always like, anyone that tells me they have genetic, I'm like, Do you Marissa? Have you talked to Marissa? You need to look her up. BRCA and beyond.
Marisa: Thank you.
Krystal with a K: So I'm sending all the BRCA peeps to you because I don't I
Marisa: Thank you.
Krystal with a K: don't have that. I know a little bit because I was with the breast cancer nonprofit, but
Marisa: Right.
Krystal with a K: That's really the only reason that I know about it.
Marisa: we're we're trying to change that. it's Brock and Beyond because I have Braca, but there's there's no place really for the genetic mutated the genetic mutants to land. The mutants. No, I will be their professor. Right. I will
Krystal with a K: The mutants. They don't have Professor Xavier's of the cancer community, where are you? We need a bald man in a wheelchair. Where are you? Just kidding.
Marisa: I will be that man in the wheelchair. But I I get messages all
Krystal with a K: With hair.
Marisa: the time and they're just like, well, I have Pell B2 and I'm not sure if you I'm like, no, no, no, no. Like this is just what it is because that's what I have, you know, but it's it's beyond. And that's why I put that beyond in there too, because it is beyond just Braca. It's all of the genetic mutations, it's beyond just the mutations because it's cancer. Like we are all fighting the same fight in different ways, shape, or forms. And then also it's beyond just our diagnosis.
Krystal with a K: Well, Marissa, it's been a fucking delight. I love your dark humor. I love what you do for our community. can you do a little plug real quick for your podcast
Marisa: Sure. So you can find me on Instagram. My personal account is Marissa, and it's M-A-R-I-S-S-T-A-C-H-E, which is my first name, last name. I always have to explain it. So it's like Marissa Stash, like mustache, but it's Marissa Stahelski. So that's my personal. If you ever wanna see me out in the wild hanging out with my kids, combo with my advocacy. And then the podcast is also on Instagram at Braca and Beyond. And you can listen to the podcast on Apple, Spotify, Amazon Music, all the good things, and also my website www.bracandbeyond.com.
Krystal with a K: Love it. And you will send me all that info as well as some resources and for
Marisa: All of it. Yep.
Krystal with a K: the Bracca community. And I will put that on my blog and you can find that at www dot platwistillalive.com. I have to say it that way, you know. Everyone loves it. And then
Marisa: Otherwise it doesn't count.
Krystal with a K: yeah, follow me on Instagram, same name, platwist still alive and Facebook. I mean all of it. You it's the same. There's a theme here. But we gotta end this shit the right way. So we're gonna do a high five. Are you ready?
Marisa: Yep. Wait, where am I? There I am.
Krystal with a K: Put your hand up. Still alive and do your evil laugh.
Marisa: Right now?
Krystal with a K: Yes, go. I love the little hands.
Marisa: Mm-hmm.