Positive Gene Podcast: Season 3 Ep #1: Running Through Risk: Kristina Coccoluto on BRCA, Purpose and Marathon Milestones

(Links mentioned in the episode are located at the bottom of the page)

---

Sara

Welcome to the Positive Gene Podcast.

This is Sara and today we have an incredibly inspiring guest with us, Ms. Coccolutto. Kristina is a mom, marathon runner, speaker, passionate advocate for hereditary cancer awareness. After testing positive for BRCA1 gene mutation, Kristina made the life-changing decision to undergo a double mastectomy and later a complete hysterectomy and not out of fear, but to reclaim her future.

Kristina didn't stop at surgery. She turned to running as a way to heal, to fundraise and to spark change. She has completed multiple marathons and some notable ones we'll talk about in a little bit more detail, but it included Boston, Chicago, New York, Berlin, Tokyo, and most recently London and became the first woman in the world to earn the Abbott World Marathon Major's six star medal following a double mastectomy and complete hysterectomy.

Whew, quite an achievement. Her fundraising efforts have raised over $30,000 for organizations like Bright Pink, Dana Farber Cancer Institute. As a sought after speaker, she shares her journey to help others believe in themselves, even when the path ahead is uncertain. Her story is a testament to the power of purpose, perspective, and,  got to use a running metaphor here, putting one foot in front of the other even when life gets hard. So Kristina is running towards a future where fewer people have to make choices like she did. And I can tell you she is not slowing down anytime soon. So welcome to the show.

Kristina

Thank you, Sara. I appreciate you having me here and I'm so excited to connect with your audience. And if it means any parts of my stories can help them navigate their own, we're doing our job.

Sara Kavanaugh, Vanessa Federico and Kristina Coccoluto at the FORCE Conference in Philadelphia, PA (June 2024)

Sara

Awesome. Well, good. I appreciate you being here and being willing to share your story. All righty. Okay, so for those that are just meeting you, can you introduce yourself and share a little bit about the moment your journey with genetic risk began?

Kristina

So, my name is Kristina Cuccolutto and I always like to explain that my genetic risk happened at birth. I was born this way. The BRCA1 mutation is something that was never truly a surprise for me and I say that not because I take it lightly for somebody else, but I grew up in my household with my mom as a two-time breast cancer survivor. I am the niece of a woman who passed away from ovarian cancer. And I feel like as a kid growing up, I was surrounded by cancer and I had it from a very different perspective. So I love sharing my story with survivors often too that maybe not wanting to get like a just a different lens of what it's like to be a child in the household with a parent that's had cancer and how it may sound to somebody on the outside looking in that that's so sad and tragic and difficult and parts of it are.  But what was so amazing from that was it taught me so much about how I want my life to go and it empowered me to know my own risk. So I consider myself very fortunate that it was my mom because like you and I know, maybe I'm assuming a lot of people on your podcasts already know that you can inherit a genetic mutation from your father. 

So stars aligned and it was very obvious to my doctors when the time came to get tested that this is something that I should do because again, my mom was a two-time survivor. I am the niece of a woman who passed away and I had already had melanoma at the age of 20. So all of the red flags were there.

And so at 25, I found out I was BRCA positive. And I'll tell you that knowing my risk at that time felt like a really heavy decision. But now I have a fortunate lens of being on the other side of surgeries, as you mentioned earlier, I've had these surgeries and the freedom I felt from what I once saw to where I am now is very different. And that's because due to research and where we're at, there's a difference in generations between my mother's generation and my generation. I have three kids and I know that the more we fund research and have conversations like this, there'll be changes for our kids and hopefully like a whole new way that we think about being a previvor too. So this whole process of kind of navigating risk is something that I view as a massive blessing.

I think that I watched what it was like as a child. My mom did not know her risk to no one's fault, but she didn't know her risk even though she was a mutation carrier. And when she got diagnosed with breast cancer, even though both of my aunts had already been diagnosed with breast cancer, it felt like the rug got pulled out from underneath her. She felt like, my goodness, I can't believe this is happening to our family again. And watching how the emotional toll from the lens of a child seeing like your parent also not know and have so much fear in the unknown. I recognize that knowledge truly is powerful to know what your risk is, to know that we have options. And so I became the first person in my family to have a mastectomy preventatively or risk reducing way. But in order to take that step, you kind of need a little bit of faith in the end to know that that is the right step for you. And it's not a one size fits all recipe. And I know a lot of times everyone's like looking for the answers of what works.

And when I tell my story, always love everyone to know is that I always felt even at the times when I did not have the answer, I always felt like something greater than me was guiding me on my way. Even in the really challenging moments. And I'll share with your audience later that I'm going through a really challenging moment now. 

But one of the first things that my surgical process was I found a lump in my breast. I was 29 years old and I found a lump.   And after someone who's had multiple mammograms and MRIs, when I had that lump and I needed a core needle biopsy, it was that moment that I knew, like now I'm ready to take action. So there's the surveillance process that we all kind of go through. And then there's that moment of wondering when we're gonna feel ready to take action. And for me, it was the real life threat. Like once that came and I had this feeling inside of this might not be a threat, this might be the real deal. And I said, I can't wait and have this feeling ever again, I need to take action now. So I always think like, wow, what a gift that lump was, even though it was a stressful time, it was a gift, it was teaching me, it was showing me that I feel empowered when I can make positive choices for myself.

Sara

Mm-hmm. Absolutely.   I feel like there's a little bit to unpack there. One relating to, we have similar stories in terms of our cancer narrative, being children, having people in our home dealing with cancer. I've talked about it on a past podcast with having my paternal grandfather living with us when he was going through colon cancer. And I was eight years old. And it does set that narrative in your mind of  whether it manifests as, you know, fear and something you don't want to worry about for your future, or it can manifest as something like, you know, health anxiety, you know,…But my I feel like my health anxiety stems from a lot of that experience of seeing my grandfather go  through chemo treatments and what it did to his body, right? My mom also had a series of health problems, had thyroid cancer, you so you going in and out of treatments and the hospital and treatment centers and all of these things with your family members. And it does take its toll. And I do think about that, my own kids, you know, I try to...limit how much I share with them about my own journey, although they both know I have a podcast. Only my oldest really understands what that means that I share my story about being a previvor. But I think it's important that we are talking about it.

Kristina

So I will tell you that growing up, I came from a family that was very like hush hush. Nobody talked about these things. was something. So I will, I with respect to my family and it's everybody you can meet where you're at and through your experiences. And I know that my mom and my aunts, the badge of honor was strength was in silence. I recognized that stoicism did not equal strength. I needed to see real, what you're really feeling, that there can be strength in all different aspects of ourselves. I'll take the time to explain to you that when I began my healing journey before I even knew I was BRCA positive, we have conversations around mental health and knowing that we have a mental body, but we'll go a little bit deeper. I believe that we have five bodies within our body. We have a mental body, an emotional body, an energetic body, a physical body, and a spiritual body. 

And if we are in our head, all day long, but we don't go into our feelings. That's like the difference between the mental and emotional. And I witnessed in my family often like a version of what we think strength is and then the meltdown afterwards of like what it takes to build to get through and that's survival mode, right? Like we all tend to do these things when we're in survival mode. And so I've learned that there's kind of a way that we can break down our five bodies and you're never going to feel like an even keel. And some days our buckets will be filled in one way where we're feeling physically strong, but mentally drained. And it's not always going to be this complete balance. But one thing's for sure is that when we're paying attention and cognizant of how we're like how we're feeling on the inside.  The real strength becomes acknowledging what our needs are and fueling those needs because in my family, we didn't do those things. So I realized I'm going to be the cycle breaker to do those things. 

And it's no shade, no shame, no difficult, like, everybody could only meet where they were at. And when I was shining the lights on the areas that I needed to heal, I realized my mindset had so much to do with it.  

And that's where running came in. 

And everybody laughs when I say this or says, you cannot believe what you're saying. But I'm not a runner in the traditional sense. I've ran, yes, I've ran the six world major marathons. But Sara, I'm not the type of girl that goes out. I have not ran since London, since April 27th. I do not. My watch is right here, plugged in on my desk. It's not on my wrist to remind me that I'm not running.  It's, I do this when I need it. And I use it as a tool for myself to remind myself because when I run, those five bodies feel in unison. 

So I feel like even if I'm physically feel like I'm dying while I'm running a marathon, I realize that like my emotions step in and my mental health steps in and I feel like something above me is with me more so that's calling me to keep going and be who I am and show up as myself. And I know that there's an energy inside me that's different. 

So I feel like that soulful version of myself when I'm running, but I'm not the type of person like don't get it twisted that I'm not the gal that like every day puts on our sports bra, gets on our clothes and like loves to run because running so awesome. Like I hate running a lot of times. I'm like, ugh…..But once I'm out and once I'm pushing myself beyond what I once thought I could do, there's a magic in seeing and it doesn't have to be running. You could do it in anything you do in life. Like once you push beyond the limit of what you thought was possible, that's pretty magical. And I enjoy a good 5K, a 10K, but there's nothing like seeing the spirit of who you are when you push beyond what you think you can do. And when you tell yourself, no, I can't do it, and then you do. It kind of sets you up to realize, wow, what else can I have? told myself there's no way in hell I'm doing that. And then you can go ahead and smash through it. 

So running's taught me how to push and where to push in my life. And with that said, I know I just gave you so much to unpack, but this is where my story career began as well. 

It was like all of it came together, whether it was running, storytelling…  I'm just always been this way. And I was on this journey of wanting to know why, why, not why did this happen to me, but like what am I here for? You know, I love nonprofits and I support tons of them, but I don't really want to start my own nonprofits. So, geez, I just don't know, like, what am I supposed to do? What's next for me? I don't know what I'm supposed to do. 

And I was asking this question and asking this question over and over and over again. And so the marathoning piece began right before my mastectomy. When I found out, like I said, at 29 that I had this lump and I knew I found out it got tested through a core needle biopsy that it wasn’t cancer. That was February in Boston of 2015. And so I could certainly not run, I'm from Boston, could not run the Boston Marathon because that wouldn't give me enough time to train. So I started meeting with surgeons and because I didn't have breast cancer, my surgeons recommended scheduling my surgery further out and they suggested January. And so at this point, that's almost a year later. I'm like, wow, that's a long time to go. 

So, I knew I needed to do something to kind of keep my mental health. It was all about the mental health at that point. Like how do I not have a breakdown as I'm saying goodbye to my breasts forever? I started a blog, which like who has blogs now? No one, but it was a blog and it was basically for my friends and family as I was describing my anxiety about having breast implants because I...never really wanted a breast augmentation and I felt like everyone was going to be judging me and my 29 year old self felt very insecure about what other people thought about this decision. I never had it in my mind or possibility that people could feel empowered or that there was something good that can come with it. It was literally to set the record straight and get out all my thoughts so there could be no debate. This is how I feel. It's in writing and that was my intention behind the blog.  The blog was not a smashing success that went viral overnight and everybody knew about. It was something that I still pay for it to exist as like a lovely reminder for me to know and keep myself accountable that it's out there in the world. But also if somebody ever needed to Google those words to hear them to feel validated, it's generationalwar.com. But anyway, yeah, it was….But it was just like, that was the 29 year old version of me that needed to get it out, that needed to feel heard. And so  I signed up for the Chicago Marathon at that time. And this amazing thing happened once I said that I needed to do this. I had an army of support around me that I didn't really know that this would happen.

You know, like the little girl that I used to babysit down the street that's now, you know, an adult is saying to me like, I'm going to run alongside you. My sister is like, I'm going to run alongside you. My best friend from college, other friends from college, my sister's roommates in college. Like people are like, you're not running this alone. We got you. And so feeling that sense of support and community all of a sudden showed like what running can do and how you can find these things. And even though like there are moments where it was like, it's so hard…this sucks, like this is brutal. There would be this camaraderie around it. 

And what was funny was we got to the Chicago Marathon...

...and I crossed the finish line with the mentality that if I can do this, I can do anything. But I still had this like heavy weight, like the real finish line was waiting for me in the distance. 

And so my mastectomy was four days after my 30th birthday. My birthday is New Year's Eve and so it was January 4th. And I remember feeling like I was kicking off my 30s with this like tragic energy, was kind of how I felt inside. And I hated that, but like I had to show face as this was an empowering choice because no one in my family had to make this choice. And so I had this guilt surrounding the fact that my aunt died from this. My mom had this and suffered from this.

And now I have this choice and I feel crappy about the fact that this is my option, but I'm gonna show everybody else how strong I am. And that's the face that I'm going to have and maintaining that I realized was not serving the people that I ultimately wanted to serve, but it was a front. It was a wall. was armor that I built for myself to put my head down and get through this. So if this isn't visible for everybody else, this is how I can contain it and this is how I can show up.

Once I started to do the work, I quote that, like do the work to really support the inner healing that I needed, I realized that when I show up and serve myself the way that I need, that gives everyone else in my orbit and community and anyone else watching to do the same and so authenticity and showing up vulnerably is where we find community. That's where the true connection's at. It's not about proving to anybody that you’re strong; because I can do that with anything in life.  It’s really the true connection comes in when you’re fully authentically yourself; you don’t need to perform, you need to be yourself.   

I have two younger sisters. I was afraid if I show them this, that I'm struggling, maybe they won't get tested.  Maybe they will never have surgery. So I carried like this pressure to make it perfect. So to make it good for them so that they would feel empowered to make the right choices. And you met my sister before you met me. So BRCABabeBoston, Vanessa is my sister. She's seven years younger than me. And so she got tests. She ran the marathon. She's the sister that ran with me the first time. And I always say that something greater than us spiritually had her join me in that and get tested immediately afterwards because something was saying to her like, you need to learn this. And so she tested positive and my other sister tested negative, but it just goes to show that there is such, if you're willing to really sit, get quiet and listen, there is a spiritual body within you.

But we are all of us, me included, are so busy on our day to day lives. You have kids or you're working and you have all like studying all the things that we're trying to do and accomplish and have dreams and goals and then like laundry. It gets foggy. But when we get quiet and settle in to what our purpose is, our purpose is to show up as our highest self and be a loving being.

And when I started to step into that, I realized why telling my story matters. Because all I wanted as a kid or as a BRCA positive person was to see someone just like me on the other side of all of this, but was not the victim in their story, but the victor.

Sara

That's beautiful. I think the showing up authentically, and I've been following you for probably about a year or so. Really, it's been refreshing to see that because I think a lot of people get uncomfortable with real, with raw. You know what I mean? Whether it's themselves, you know, I mean, it's taken me a minute as well to be okay. It wasn't so uncomfortable sharing my previvorrship story, but it's when you start talking about, boy, there's a little bit of personal details that we often have to share in this world, right? Like meeting with Dr. Gandolfo and talking about colonoscopies and colonoscopy prep, you know? 

Okay, well, we need to normalize these conversations. They save people's lives. This shouldn't be something that should be awkward to talk about or even getting mammograms. I mean, I remember talking about, our moms didn't talk about those things and the discomfort. I feel like there's a little bit more openness to that, but the more we normalize this, the more lives we could potentially save by being open and honest about what it's really like - the good, the bad and the ugly, right?

Kristina

I think that we're of a generation that has some visibility wounds, right? Like being seen in exactly our truth is something like, cause we were trained from a very young age to kind of like, like I said, in a way how my mom was training me and it's innocent, but it's like the stoicism is strength. I've found that the strongest moments I've had in my life is when I'm real because what strength it takes to show up in this world fully as yourself and say, I need you to love me exactly for who I am and if you don't and you wanna leave, I'm gonna be okay. I just need the people in my life to be fully accepting of me and so it's interesting because I've told my story a lot. Like as you know, I've told my story on television, on podcasts, for national press and when I tell my story, I'm okay, say all the time, I don't need a script, I don't need somebody to tell me, and I don't mean that because I have this arrogance about me when I tell my story. It's I'm here to speak my raw truth, and as I speak my raw truth, I am the expert of my own experience.

When I show up fully and share myself fully, there is a risk, but there's also a massive reward.  And the reward is just one. All I need is to know that one person listening or reading on the other end felt validation in their own journey. We could have completely different stories, but if at the end of the day, by hearing something, if by when I'm in my purpose, speaking my truth, it shows you or shines a light, the light in me shines a light back into you. And that's why we're all here. And if we are a little bit more kind and loving, it makes me say, well, wait a minute, Sara, let's pause, right? These wounds are visibility wounds and of being afraid to be seen for who we are. But when we show up exactly who we are, we're offering a gift to somebody else to give them permission to be more of who they are. And when we do that and we honor that, it might feel very uncomfortable at first if we've never given ourselves permission to, it's okay to be fully ourselves.

But when we do that and we choose to love that parts of ourselves and choose to not be a people pleaser, to do what's best and honor ourself first in our story, you'll never have imposter syndrome. I don't have imposter syndrome. Like a year ago, I would have walked into a room and not been sure why I'm there and made comments like, I'm just a stay at home mom. Like I'm not a speaker, I'm not an advocate, I'm not a world major marathoner. I'm not setting, geez, that's a lot.  No, it's how you honor yourself in your truth. 

And I think all women have somewhat, somewhere, visibility wound. And I can say there are still moments. So for example, tonight I'm speaking at an event in Boston regarding ovarian cancer. And I'm meeting and moderating a panel with researchers from MIT. And at first when this happened, I'm like, wow, look at what these cancer research and engineers are doing. How did I get here? And to me, I'll be like intimidated and feeling that imposter syndrome. And then it's like, of course I got here. I got here because I'm passionate about research and I know the difference of what research does. I know the power of my story. I know that when I tell my story, it makes somebody feel a little bit more permission to tell theirs. I know that when I tell my story, it's not about what I've done or the cool things that I've been able to say that I've done. That's the past. What I'm doing now is taking my truth and saying what what about me can help you determine where you need to go in your story. And so that's been like the really fun piece post marathon right now is saying like let's expand the way we tell our stories. Let's get really vulnerable. Let's talk about all of the things that we wish somebody told us when we were just begging for answers.

Sara

I'm sure I'm not alone when we say that we do appreciate that you are willing to be one of those vocal people, right?  Oftentimes, I feel like whenever given more than we can handle, kind of to use another common phrase, you know, with these things. And I think there is a mindset. I think you said this very at the very beginning of the podcast, you have a mindset. And if you're going to choose to let this overtake you, or not ask questions or not reach out to people or even being open to those that are in similar situations. I think it's difficult at the very early stages of your diagnosis because you almost feel like, how could this happen to me? Nobody understands what I'm going through… But the more often you make connections with people who are going through it that used a metaphor of filling things up, you know, you're starting to fill that up with a little bit more grace for yourself. The more you start to understand you're not alone. And I always end with every podcast, you know, episode with you're not alone in this journey, because I think it's important for people to really recognize there are folks out there that are willing to share their experiences so that you can learn from those experiences, as you've just stated.

Kristina

Yeah, yeah, absolutely. I know the surgical piece. I can't tell you how many people, my sister is amazing when it comes to being capable of showing people her body and what it looks like and openly has it living on her page. I'm not that way. But if you were to slide into my DMs and be like, show me your scars, I need to see that you're okay, I'd be like, okay, no problem. If you need that for your journey, I'm here for it. But there are some of us that are willing to get really vulnerable and I would never be able to do what Vanessa does and I don't shame her for it. say like, wow, I don't have that confidence, but I'm so proud of her for being able to and wanting to help people like that so they don't have to feel ashamed to ask. It's incredible and inspiring.

Sara

So I think you'd already mentioned that we met through Instagram and then we met in person at the FORCE Conference. I don't think we got a chance to really connect and talk until like the last day that morning and we were taking pictures. But I'll share that I have that picture I can share that on Instagram and on the blog. But again, on Instagram, you publicly share your story, very bravely share your story. And you shared it on other major platforms like the Today Show.  I believe we've already spoken to this a little bit, but maybe you can talk a bit more precisely about what made you want to speak out and begin advocating. Those are really two avenues. You can speak out on Instagram, you can share your story, you can share all those things. But being an advocate is a whole another  level in my mind. I've seen you do both worlds. So fill me in on your story of how it relates to you…

Kristina

Ooh, this is like so fascinating. So I started to tell that then I didn't go all the way, but I'm like trying to get into like a crisscross applesauce position of let's get juicy and into it. so basically I had this really big desire to know what my purpose was. And I had no idea what my purpose was in all of this. And I was on this healing journey, both, like I said, physically, mentally, emotionally. You really need to work on the energetics because you can say one thing, you can feel one thing, but then when you walk into a room, how you carry yourself and who you show up as, that's your energy, right? And I always wanted to be the big loving person that I was, but I feel like I carried this victimhood mindset for a while. And you might not know that version of me, but I'm sure like I had friends walk out of my life for that. it was like life was happening to me over and over and I couldn't carry the weight of it all.

And so when I was learning, like, how do I lift this energetically, this veil off of me, it was really interesting. I saw a psychic medium who's also an intuitive healer. And she said to me, you just need to tell your story. And I had no idea what that meant. I have not a clue what that meant at all. I thought that when I tell my story, that means somebody that is listening on the other side of the audience is going to mirror back to me like, oh my gosh, I have this opportunity for you and here's your purpose and all of this. Like that's what I thought when she said, your story. So it's funny now it's like something I can laugh at, but I began telling my story beyond the blog, beyond Instagram. was telling my story on Instagram all the time, but then I, while I was running for Dana Farber, and I will edit your beginning piece and don't change it. It's kind of funny to leave it here. So actually in the cancer space, I've raised over hundred thousand dollars, but for Dana Farber, I raised $33,000 for BRCA research specifically, $30,000 for their overall, their Claudia Adams Bar Research Program. I just raised $16,000 for BRCA Strong to give pre-mastectomy care packages to women. Like…Then I also raised between the two marathons, I forget what it was for the first one, but it was in the tens of thousands for Bright Pink. And the reason why I say this is I've been a powerhouse fundraiser through telling my story all along. And when you run the Boston Marathon, I am not a fast runner. I am a charity runner. And so I, as a charity runner, you have to raise a substantial amount of money for the Boston bib. It's like $10,000, so as a minimum. Yeah, so if you're gonna do it, it's like, okay, have to, like people, need to know how, when you ask people for money, they need to know your why.     I had my mastectomy and my sister ran alongside me for that moment for our first marathon. And then she got tested and then we ran the New York marathon to kind of celebrate that. But we're both from Boston, right? So we always knew that if you're a Bostonian, there's only one marathon and everyone assumes that the Boston's it. They don't realize that there are other marathons in the world. So we knew someday we would be doing Boston…but my sister was waiting for her. She was like, I'm gonna have my surgery now, but I'm gonna run Boston. At this time, when she made that decision, I had already booked my complete hysterectomy. And it was like weeks away, the surgery. And I just looked at her and I felt really guilty because then it kind of meant, I've always thought that when she goes to have her surgery, I would say, I'm not letting you run alone either.

So she saw my surgery was October 3rd. And I looked at my planner and I counted out like, okay, I'll have eight weeks to recover from my complete hysterectomy. And I'm like flipping the pages and the Boston Marathon's on April 17th and you need 20 weeks to train from Monday, October 3rd to Monday, April 17th. It was exactly 28 weeks. So I was like, okay, I'm gonna run the Boston Marathon. I'm just gonna do it with you. It won't be pretty, but I'll do it.

Sara 

Wow. I love it.

Kristina 

And so I joined the team for Dana-Farber. They have 500 bibs. We were, and my sister Stephanie, my younger sister joined, and we just knew that this was going to be a victory lap to celebrate, to celebrate post-hysterectomy and pre-mastectomy for my sister, to say nothing's gonna stop us. We're just gonna keep doing this and feel empowered in our journey. So I shared my story on Instagram with my fundraising link right before I went under for surgery and just like, I made a stop on the way to the hospital. I had my husband stop at the finishing line and I took a picture flexing at the finish line saying like, this is where it's gonna happen. 28 weeks from now, mark my words, I'm crossing this finish line and I will be free from cancer. And I hit that fundraising minimum pretty quickly after that. And Dana Farber was saying like, who is this girl that's raised $10,000 right away? Like what's going on?

And so they had the intake call to be like, hey, who are you? What's happening? And I was like, hi, I'm Kristina Cuccaluto. I'm BRCA positive. I don't know if you know what that means, but, and I explained everything. They were like, we would love for you, and I heard the words, “to tell your story to our fundraising call as a panelist”. And I was like, tell your story, it's an opportunity to hit my purpose. Maybe someone on that call is gonna show me what my purpose is. So I get on the call and all of the panelists are speaking and I'm the final panelist and Sara, every single panelist use my talking points. So I'm sitting there like sweating it out and I was not a speaker, not somebody who was used to telling my story. And I'm like, my God, I have to talk next, what am I gonna talk about? And so I just said, okay.  I'd like to actually, said everybody already used my talking points about how you need to tell your story and tell it with authenticity, tell it early and often, but actually right now I'm going to tell my story for you the way that I tell my story so you can see it. So you get what I, what I feel, it feels like. And there were  150 people on the zoom call and the chat room was blown up on the side being like, my gosh, I need to have you speak at my event. Will you come speak at my event? And I thought I've never really spoken in front of anybody, but sure, why not? And then the words came out, I just want you to tell your story. And I was like, it's happening again. Maybe, this was literally me out loud, Sara, maybe somebody at that event is gonna show me what my purpose is. So I go to this event, predominantly men, they were like a biker crowd. And I told my sister, I was like, I don't know what telling my story of losing my breasts is gonna be like to all these men in this room.

But like, you stand by the door in case it sucks and we'll just leave? And she's like, yeah, no problem. So I'm like, tell my story on the mic. The room gives a standing ovation and there's a line of men talking to me afterwards, wanting to let me know that hearing me use my vulnerability taught them that they need to share their story too, because some of them have kept from all of their friends that they had prostate cancer or that they were facing thyroid cancer and they just thought that being stoic was the answer as a man and that they weren't in touch with telling their story or what they've gone through for support. And seeing me light up a room by being myself gave them permission to do that. And I was like, wow, that's really crazy that that did that. I didn't realize my story had that power. And then after that, Dana Farber called me and they were like, hey, tomorrow can a news camera come to your house? We need a news crew here. We're gonna film. I'm like, tomorrow?

Okay, sure. they're like, we just want you to, all we want you to do, just tell your story. And I'm like, there it is again, tell your story. And then I'm like, maybe, of course Sara, right? It's not hitting me. I'm like, maybe someone who's watching my story on TV is going to show me my purpose. So I felt really stupid looking back afterwards. like, okay, I have no idea where this is leading, but I'm going to go ahead and tell my story on TV. So me and my sisters and a glam squad at 6 a.m. got ready and had TV cameras rolling to tell my story.

And then after it aired, Dana Farber called me again and they said, you know, the night before the marathon, traditionally we always have a speaker and would love for you to keynote to unite the room. And inside this room, there'll be our team of 500 runners, their family, plus pediatric patients and their families and doctors. And just a heads up, there'll be over a thousand people in that room. Will you tell your story?

And I was like the night before the marathon, like the marathon I've been dreaming of my whole life as a Boston gal, no pressure, sure, I'll tell my story. So I keynoted the event to have it be about how, and this is so important, I think, for anyone with a genetic mutation to hear, that we often are trained to think in terms of someday.

Someday I'll do this, take this trip and someday I'll go here and someday I'll write that book and someday I'll run that race and someday I'm gonna and someday, someday, someday. But what cancer taught me is to make someday now. And you are the driver of your life. There is nobody else in the, you might have a co-pilot, you might have reasons and detours and setbacks and massive roadblocks in your way.

But ultimately the biggest one is in here in your mind. And when you tell yourself you can and you show yourself the way, said there'll be, in reference to the Boston Marathon, there'll be no cars on the course tomorrow. There are the runners and there are the patients and the patient partners and everyone cheering on the sidelines.

But as runners, as people who are searching for change and fundraising for cancer research and to create a world where we're not feeling like we're bogged down by cancer, we are creating somebody else's someday. Someday, I'm gonna go do what these people are doing and I'm gonna fundraise for change. Someday, I'm gonna run the race. And so I whispered back into the microphone and say, and someday we will see a world without cancer.

In the room, and my children were in the front row, and they heard me speak about everything when I told our story, and I told my story as being a mom, as what it means when you pass these things on. But the room all stood up on their feet. And when you see over a thousand people clapping and cheering, and your kids are crying and cheering because they're seeing your purpose, it mirrored back to me, this is it. This is what I'm called here to do.

And it took, you know, it took podcasts and TV and in-person. It took a long time to see what I was meant to do. And I still would be like, but please explain what this really means. Like, what, what, what is it? And it's like, it's just being you. And that's like other people might say to me, but that was, that's cool for you. And it's like, it's the same for you. Like you and I, all have a recipe, Sara. It's just figuring out what's your main ingredient and how do you make it shine?

That's it. That's like just saying like we all have our own recipe, but just trying to figure out what in you is the main thing that you want people to taste, to feel, to smell, to walk away with. And that's like the whole image. 

And so what I want, I know, I know that no matter what comes my way in life, I want my family to know that there were no somedays. Like I just said, we're making it happen. That there's no more in the, it’s, we are going to live, we're going to live fully and as the full expression of ourselves and it's challenging and it doesn't mean that it's not without hardship or difficult moments but when you take on the attitude, they're like this is going to happen for me even the difficult chapters. I can tell you right now none of this would have happened if I didn't lose my breasts.  None of it. That happened for me. Like how amazing to say like losing your ovaries gave you the freedom to exhale and say like, I've done everything I can to outpace this cancer. Now it's just up to me to like maintain this happy energy or this healthy energy and process and show that it's possible for other people too. And I think the greatest gift that I've been able to give myself in all of this is permission to continue to be myself, to not feel like it's gotta be perfect. Because a lot of us don't start, because we're afraid that, what if we don't get it right? What if it's not just that way? Or what if we fail? And that voice is in your mental body. And sometimes you need to just show it and remember the times where it was okay and safe to just push through into the uncertainty and realize like the big lesson that I'm learning how to master right now is that we've, you and I have learned in cancer that uncertainty makes you feel unsafe. I don't know what my results are gonna be. I feel unsafe inside. I don't know what this is gonna be. I feel unsafe. I feel unsafe. But we can use muscles to train ourselves and say, uncertainty can equal adventure.

And that's right now, so I'll share with like all of your listeners. So when I had my mastectomy, I had implants that were put in that were, I had put in solely because I wanted to reconstruct a breast after losing my breasts. I forfeited my healthy breast to recreate one and implants were used. Those implants have a recall and my surgeon and the FDA recommended keeping the implants in.  And since then, post-marathoning, there is a fluid around my breast implant that's being tested for the same reason why it was recalled. It's being tested for a rare lymphoma. And right now, I just had an MRI yesterday. It was my second MRI after an ultrasound and a fine needle aspiration. I still don't have answers. And I hope you can see and hear in my voice too that I'm okay even in the uncertainty because I'm mastering right now that this is happening for me and it was something that I just can't see yet. And just because I can't see it doesn't mean it's not possible. And so many incredible possibilities have blossomed from the darkest spaces of my life. And so I'm just hanging on to the hope and perseverance that no matter what the outcomes are, I can project and show.

I'm always going to be me no matter what I face. And that's like the gift that I've given myself through healing.

Sara

Yeah, that's beautiful. And I appreciate that about you.  Okay, so you've alluded to this a little bit, but the healing process, whether it be sort of healing our emotional wounds through this experience or your physical healing ones, through your surgeries, you talked a bit about kind of making that space, we talked about that just now, really making that space, and it could be planned time to make space for if you're dealing with it from a grief, perspective, or just dealing with all of the change and churn that comes with that.  So my question to you then would be, really, what advice would you give to somebody who is newly or newer diagnosed and still sort of navigating how to cope with the unknown, cope with the screening process, potential surgeries. Give us a little bit of perspective on, that healing process isn't linear. It's going to ebb and flow, as you've mentioned. So take us through some advice that you would give to our listeners on that perspective.

KRISTINA  

Keep a journal, keep a journal to write. Not something that's a dear diary that you need to do every day and date it, but keep a notebook dedicated to this experience for you because you will see your growth and that will make you kind of, just the way that maybe if you picked up a diary from third grade right now and you read it, you would be like, wow, I am not that girl anymore. But you'll feel that way about your experience when you see the way that you thought or the fears that you had or what you were able to overcome. That's the shedding and telling your story. And you may see when I know that when I told my story multiple times in all different ways, each time I told my story, I saw something new about myself that

I realize sometimes I had limiting beliefs in my story or I didn't I saw a lack of worthiness or the words that I chose that just came out showed me an area that still needed healing and that feels like I think I I kind of I I'll say this I Do not take advice from anyone who only speaks in the past like when I healed when I did that thing — Healing is not A to Z. It is not this process that once you do it, you're done. You went to a therapist once, check the box, did that, therapy's great. But there are so many forms of recognizing in yourself that, okay, there's this vast human being within me that has so many thoughts and processes. So I would say to somebody, be consistent in your expectation of yourself by showing up and know that the first time is not going to be the time you get the answer. It's the same thing with running that I found in marathoning too. Like I'll give you the running metaphor is that when you train, it's literally one foot in front of the other. 

And so in everyday life, it's one foot in front of the other. And there are gonna be days like, I've had horrible runs. Does that mean when you go out for a run and the wind was blowing in your face, you're tired, you're slipped, you're fell, you didn't eat well the night before, should you take it into your next run? You know, you can shake your head and say no. But in the day-to-day practice, when you're living it and we carry our baggage with us, we have to see where we need to release, what we don't need to carry with us, what no longer serves us.

And when you tell your story in a journal, when you write it out, you're gonna start to realize, there's no other way for me to say it and I hope swearing's okay, but there's just shit up here that you just gotta let go of. I can't even say stuff, because it's not.

It's like the bad things that you don't even realize that they're weighing you down. You're carrying this stuff with you. You can't carry it forever. You are meant to let it go and move and live a beautiful life and this will always be a part of you, but it is not the whole picture. 

Because now, even though you can say and announce Sara as like, oh, Kristina Coccaluto, BRCA1 positive, provider, love being a hereditary cancer patient advocate, love that that's a piece of who I am, I love knowing all that I've overcome to become this version of me. I can confidently say, I don't know anybody who's walked in my shoes and has been able to do what I do, not only because I'm the first, but I say that with pride because I'm proud of all that I've walked through. I would have never have picked this for myself, been like, that is the road, my friend. But if you're on that path, you'd be amazed to say, well, take the script, and I hated this and resented this for anybody who's in the spot, you're gonna hate me when I say it. And I used to actually say the words like, f that, I hate that…That’s so awful. hate that. But how is this happening for you?

Hmm, like pause like where can I find the gratitude and for me? I don't talk about this I talk about this often, but I haven't talked about this yet with you I mentioned quickly at the beginning of the podcast that I'm a niece of a woman who died.        Nb I hate saying that because my aunt was not just a woman who died My aunt for me was my North star in life My aunt was my greatest advocate one of my best friends the person who mirrored me safety in life and showed me how amazing I was as little girl and gave me confidence and filled up my cup and my aunt was like the best version of humanity. And so when she died, I could not believe that the lights went out for someone who was that bright. I could not believe that what good could come from my aunt Cathy being gone. There was nothing that good could come from that because the world needs more Cathys is how I felt.

And I'll kind of leave you with….My aunt losing my aunt, my aunt's death taught me the importance of how to live. My aunt's death taught me that we do all of us have a clock within us. We never know when it's over and it sounds depressing, but it's not. So I can't say someday, I have to live for the now because I lost my Auntie Katie and she was too young. We all think we have tomorrow, we don't know. But at the end of my days, what I'm most proud of is that if I were to die anytime soon, even now, I know that at my funeral, there'd be a standing ovation at my bedside or that moment and people would clap, not because I'm gone, but because they would know that I… didn't live for the someday that I made someday today. And that's the best kind of life.

And I'm so fulfilled that I'm living out my purpose because I know that I'm not, what it means is you get to serve others. You don't live to get rich. You don't live to have all the things, the nice to haves, but you live to serve other people and to be the full expression of yourself. So how amazing is it that my aunt taught me those things? 

Because now she's passed that on and she lives on within me. And so what good could come from my aunt passing away, I used to say over and over again. And I feel that every day in my soul. I truly do. There's not a day that's gone by where I haven't thought about my auntie Katie. 

And I feel like what a blessing it was that I got to walk this earth with her at the same time. She showed me the way. And so if somebody, you need to have somebody in your life show you the way.You need to find somebody that's going to help you find you find connect back to you and When you do you really know that like you're meant to light up a room That's your purpose and you're doing that like look what you're doing right now Like you're utilizing your time to put together information and you know that when someone listens to this it's because they needed to They were meant to hear what you had to say and bring on the guests that you have so it's incredible and you can pivot and change but you're on a path and your path is, you're meant to shine too.

Sara 

Hearing you speak of your aunt in that way, she would truly be honored to hear what impact her life had on you. And I'm sure she would truly be proud of what you've done with that legacy and really honoring her as part of your story. I think that's really sweet and I appreciate that you have, are one who is willing to say, I've done this hard path and I want to help make it, make it, we can't say it's, we're going to make it easier on anyone because we really truly it's intrinsic if you're going to make it easier on yourself or not. Right. But what we can do is to provide

In a sense, these are tools and methods and resources, if you want to look at it that way, to help people navigate this. And what I hear from you is one, looking to other people's experiences like yours as a mechanism for people to manage their diagnosis, if they're a previvor or survivor, or helping a family member….think I've also learned from you that it's okay to be vulnerable in our story. And it doesn't have to be vulnerable on social media, it can just be to somebody that cares about you. Right. And you want to share that with them.   

Okay, all right. Let's switch gears just real quick as we're closing now and ask you where people can connect with you and how can they support you in your journey and the wealth of advocacy work that you do.

Kristina

Yeah, I best way is through Instagram.  I have a website, but I just feel like it's easier to just find me @kristinacoccolutto. I'm Kristina with a K. There's lots of C's and lots of O's in there, I know, but I'm sure I'll be in the show notes. I think Instagram's the best way. Send me a DM if this was helpful. That little validation that this helped you helps me keep going, to be honest.

But my patient advocacy work is always happening behind the scenes, especially in the BRCA space. I'm hoping to get really more involved in menopause, also women's health in general, and just start speaking more to the emotional side of all of this and the energetics of what we go through and what we hold in our bodies and how we can release and expand ourselves. But really what my goal is, the big One thing I'd like to shift into next is helping people who aren't aware of their status and know that they are going through a difficult time and knowing that every single one of us carries something, but we can rise with it.

Sara 

I am so thankful we connected.  So many thanks again to our guest, Kristina. You will find her on Instagram @KristinaCocoLutto. I highly recommend you follow her. Her posts are raw, humorous, and inspiring so thank you all for listening to the Positive Gene Podcast. Until next time, stay informed, stay proactive, and remember, you are not alone on this journey.

Mentioned in the episode:

• Kristina Coccoluto on Instagram

• Kristina's blog - GENErational War

• FORCE – Facing Our Risk of Cancer Empowered

• Abbott World Marathon Majors

• Podcast Blog for additional photos and links

Disclaimer:

This podcast is for informational purposes only and is not a substitute for professional medical advice. Always consult your healthcare provider with any questions about your health.

Copyright © 2024, Sara Kavanaugh. All rights reserved.

All content on this blog, including text, images, and any other original works, unless otherwise noted, is the sole property of Sara Kavanaugh and is protected under international copyright laws. No part of this blog may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the author, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law. For permission requests, write to the author at sara@sarakavanaugh.com.