Positive Gene Podcast: Living Proof with Tiffany Graham Charkosky: Love, Loss, and Lynch Syndrome | Season 3 Ep #5

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Sara

[00.00.00]Welcome to the Positive Gene podcast. This is your host, Sara Kavanaugh. And today I am joined by Tiffany Graham Charkosky, author of the forthcoming memoir, Living Proof: How Love Defied Genetic Legacy, launching October 21st. This year, I had the privilege of reading an early draft of Tiffany's book before our recording today, and it is powerful. After discovering she carried Lynch Syndrome, a genetic condition that increases the risk of cancer. Tiffany was faced with life changing choices about her health, her future, and her role as a mother and her book. She shares not only her family's history and the profound impact of genetic testing, but also the lessons she hopes to pass on to her sons about strength, gratitude, compassion and the power of living fully. In this conversation, we will explore how Tiffany's journey has influenced her family, her perspective on resilience, and her vision for creating legacy rooted in love. Whether you're facing your own health challenges or simply looking for inspiration and how to embrace life's uncertainties, I think you will find Tiffany's story both powerful and deeply moving. And we will talk through this in greater detail today. But I can tell you I was faced with a lot of emotions throughout the story and I can't wait to dig in. So welcome to the show, Tiffany. 

Tiffany

[00.01.22] Sara, thank you so much for having me. It's so beautiful to hear you have those responses to this book, which is just finding its way out into the world now. And so the type of conversation we're having is, I think, exactly why I wanted to write this book in the first place. So I'm so honored to be here with you today. 

Sara

[00.01.42] Awesome. Thank you so much. I really appreciate your time and willingness to let me dig into this story and again, hopefully inspire others. You and I have both faced many questions and not only just finding out your genetic risk through genetic testing, but then facing challenges of preventative surgeries, the impact that it has on our families. And so we'll talk through some of these parallels. I think that you and I and many of our listeners will face when reading your story. So back to the book title, Living Proof: How Love Defied Genetic Legacy. So I wanted to look back to the timeline, because your book goes through from the time you were a child with your mother's cancer diagnosis to your boys growing up. Yeah, just kind of give us that that sense of what this means to you and why you're writing this story now. 

Tiffany

[00.03.06] Sure. So this was my I'm about 13 years after having gone through my genetic testing, and I think it took me a really long time to figure out that there was a story that I wanted to tell with this. There's sort of the raw, emotional place that you're in when you're going through something, and I think it took some time to realize that I did have a story that I wanted to share, and I wanted it to be the kind of story that people would want  to read and respond well to. And for anybody who's ever tried to write a book, there's a really big golf in between sort of  what you want to be able to do and actually having the toolkit to be able to do that. So it started probably ten years ago with just some little vignettes, just things I was writing and was trying to get out, and what I realized over time was that I did feel like I had a story. And to go back a little bit further, when I was originally going through genetic testing. I really wanted to find a book to read. I wanted to find somebody else who had been going through testing, or was facing some of the decisions that I was facing with having young children and really looking at the feelings I had around that were resurfacing around my mother having passed away when I was a child and I couldn't find anything. And so it was a really isolating experience in that sense of feeling that I was going through something that I didn't have anybody to talk to or relate to who knew it firsthand the way that I did. And so over time, it started to hit me that I might have a book that I could, that I could write. And so it took a long time to, you know, many, many, many drafts, dozens of drafts of this book had been created over time. And the first version of my draft of my book ended prior to some, a second batch of surgery that I had about, uh, three years ago. And then I thought, oh gosh, I'm having this other surgery. I probably need to go back to the book. I probably need to add this to the book. So the book sort of evolved as my timeline evolved. And it was around my 40th birthday. I'm 43. I signed myself up for a long term writing workshop. I got like a lot more serious about how I could learn the skills to tell the story in a way that would resonate with folks, and so I would say it wasn't, oh, now I just decided, I want to tell this story. I think it was just a long journey of getting the story in place and finding myself in an emotional and physical space, that I felt that I had enough distance to be able to look objectively at my life and figure out what really belonged there, and also to feel that I have like enough perspective to be able to be useful to share with others. You also asked about the title, which I wish I could claim credit for the title. I love book titles that come from the material that they are that come directly out of the book, and I didn't realize it, but I used the phrase living proof twice in the manuscript itself, and my wonderful, wonderful editor pointed that out and we had a book title. I felt like for me, it means being like the embodiment of something that you're trying to show. And for me, the context that I used it in was always wanting to show my children that we're strong enough to handle what life gives us. And so for me, that's what I hoped the title would, would show for, um, for myself and for my family and hopefully for readers. 

Sara

[00.06.21]  The aspect of Living Proof is really important in the hereditary cancer space when you're, you know, living with that gray cloud of previvorship, right?  And if you can demonstrate, and in your case through art and literature and storytelling, that you can survive hard things. I think that does so much to our community. But even on a more personal level, just your family, like what you've tried to achieve with your voice, which I think is really admirable. 

Tiffany

[00.06.49] Thank you. Thank you. I think a big piece of it for them is, you know, they haven't been tested yet. And if they do also have Lynch Syndrome, I want them to feel like it is a thing that they can handle and that they will have not just do as I say, but do as I do model by which to live, by which I hope. I hope they don't need it. But if they do, I hope to be able to show that to them.

Sara

[00.07.16] Getting into your family's history. It is interesting and and probably a many conversations that you've had over the decade plus, I think, since your diagnosis. Right. You know, people will find family history with these sporadic cancers and not necessarily always make that connection. But it wasn't until you sat down with your genetic counselor in that room when they were drawing, you know, like from your parents to you and then you to then write it like a light bulb moment occurred. And so, you know, really tell me how. That discovery of Lynch Syndrome. And you share this throughout the book. And I don't want to give away too many details in the book, but you had some enlightening moments. I guess you could say that really helped inform how you see health and resilience today. 

Tiffany

[00.10.34]Yeah. So my my mother died when I was 11, and there's no good way for a woman who's 30 to die.  Um, it was just so horrific. And, um, really, like, probably the defining thing that has happened to me in my life, but I think that I had built an identity around being really good at school and about, like, proving that I was not defined by this loss. And so I discovered that Lynch syndrome existed. I had never even heard of this. I'd never heard of it as a as a thing until I found out that my uncle, who had recently passed away, um, had been tested. He had been approached by a genetic researcher with just a few weeks left to live. And he had testing and we had no idea that he had been tested until several months later. My aunt shared the results with our family and this is all in chapter one, so I'm not giving away too much information here. But for me it was really blindsiding because it went from a thing that I had survived into a thing that I might have to deal with all over again. And for me, the fear of sort of hitting rerun like a rerun of my childhood, but like changing the characters from me being child to mother was this overwhelming feeling of just terror. I think part of what made it challenging is that it really highlighted all the ways that I hadn't really dealt with losing my mother yet. I feel like I sort of lost her, but this time I was like an adult. So that was really challenging. And I was sitting and I was mad at her. When I was a kid. I was so mad. Um, and she became ill. And sorry. What I realized through doing the testing was I could forgive her. Um, it wasn't her fault. It wasn't. It wasn't something she had done. And so I think sitting in the room with the counselor was like the moment of, like, this was not within her control. And I could also stop being mad at her. Did I answer that question? I've never been asked a question before,  so thank you. I'd thought about this answer too, but I gave you a different one. 

Sara

[00.10.40] I have a quote, page 24 here. You said…this is when you were at your aunt uncle's and you drove back… You braided and upbraided. Do you mind if I read it? I didn't get teary eyed. Because I'll tell you why this will resonate. But you said “I braided and braided my hair a thousand times and talked about everything except my mom, who I was afraid to see.” And this is a point when your mom was very ill and it was difficult for you to see her in that state, you kept referring to her as skin and bones, basically. And then you said “the healthy, vibrant, laughing mother. My childhood had vanished, and I tried to pretend I wasn't mad at her for it.” So don't even get me emotional. 

Tiffany

[00.11.25] I'm sorry. I'm so sorry. 

Sara

You know, my mom had a lot of health issues when I was growing up, and she had chronic kidney disease, and so she went into renal failure. You know, I was in my 30s, and even before that, when I was in high school, she had had a heart attack. And so she just dealt with pretty much from the time I was in high school until her passing in 2019. I've just dealt with a mom who always had something going on, but I still remember her as the mom from when I was a teenager, you know, involved with school sports and the Rotary Club and, you know, being there. And then just something changed. And then as she aged and became more and more ill, I was also mad at my mom for it. Like, why didn't you take better care of yourself? You know, like, why didn't you do this? You know, why, why weren't you there for me? So you're not alone in that. We look at these moments and we think you're upset, you’re angry. That's part of your grief. That's the loss, right? But at the same time, I also know she was doing the best she could with what she had. Right? And. Yeah, yeah, back to her childhood and maybe what she faced. It's like going back to the root of why she did the things that she did and the choices that she made. Oh, man. I'll tell you that quote just really hit home. 

Tiffany

[00.12.54] Yeah. Right out of the gate, Sara… It's like, I know you and we just met, like 30 minutes ago. 

Sara

[00.12.59] Yeah. Yeah. So one way that you and I and those listening that are in this experience of previving or dealing with a diagnosis or facing cancer or family history or somebody we love. A lot of it came down to for us is something very definitive as genetic testing. And you talk about this in the book, especially with your sister. I thought this was really interesting because my brother has the same attitude that she had at the very beginning. It took you a minute to get there in your book to feel like empowered with your decision to get genetic testing. But it can also be overwhelming and we all face things a little bit differently. And so I would like to again find a quote to share with your, it was your sister's initial reaction. I think you guys were at lunch. Would you like to read this part? 

Tiffany

[00.13.53] Brittany set her wrapper on the table and sat up straighter. 

"I mean, I'm not completely sure where I fall with testing from an ethical standpoint.” 

Here it was the judgment I feared amid my misery. 

“What do you mean?”

“Well,” she paused, as though seeking permission to continue. 

“What right do any of us have to make these kinds of decisions? I'm not even religious, but it feels like trying to play God or something.” 

Sara

[00.14.24] Ooh.  Yeah. What was your reaction here? 

Tiffany

[00.16.12]Yeah. I mean, I'm so close to my sister. She's one of my favorite humans in the entire world. And I felt, um, just a gulf between us. I was older than I am. Older than her. I'm five and a half years older than her.  And at this point, I was married. I had a baby. I felt like I had so much at stake, and I had a younger sister who was not yet married, was not yet a mother. And I, I remember feeling like I want her to be on this. I want her to be on my team here. Like I want her to do it with me. I want to go through this with somebody and then get really demonstrated that we're the same. You know, we're from the same family, and we were just in different places in our lives. And we do have different ways of, you know, experiencing the world. And I think one of the things that was really hard with this, with my sister and with my family, was feeling so conflicted about the choice that I was making for myself and feeling like I wanted everyone in my family to agree with me and support me and do the same thing. But realizing that we were all on like a different. Place in the timeline of our journey. And my family, you know, has made different choices. Everybody has made different choices in different ways of responding to this. So I think it's one among many ways that you see these pieces of information, um, like anything you deal with, with your family, where you are watching your family respond in different ways and you want them to agree with you, but you need to give them space to be who they are also. Um, yeah. So I felt real judged in that moment though. 

Sara

[00.16.19] Well, I like how you guys…you even incorporate a little bit of humor when you asked,  “And what right do I have to suggest you do the same thing I did?” And she says, “it's not that, I know you're not pushing, even though you're kind of are, you know” her green yellow eyes and gave a half smile. "You made the right choice for you and how you are. I'm not sure I know what it is yet, though for me.” And so that patience, right? It's just something those of us who wish. Yeah. If people thought the same way we did about it, you know, then maybe it wouldn't spark these conversations and some leads to action and some do not. And now to contrast that a bit later, your brother went and got genetic testing but didn't tell you. 

Tiffany

[00.17.02] No. Right. Just went and did it. Yeah. And then, you know, shared his results and it was just you see the different ways, you know. I'm the oldest. My brother's the middle. My sister's the youngest. And I feel like you just see, we each responded exactly the way that our personalities would have guessed that we would have done it. And, I think that, like everything else in life, like you are who you are, and you bring your whole, your whole personality and your all of your life experiences to the table with these decisions. I think something I noted, you know, in the same scene with my sister is it was feeling very urgent to me at that time, but realize I could have gotten the information, you know, five years earlier or five years later. And it was all still the information was the same. It's just when you know it, it feels for me anyway, so urgent. And yeah, I wanted to just share it, but was also fearful of sharing it.

Sara

[00.18.05] So, well, we talked about what it was like for you, but how does it guide the choices you've made since you could. This is the time, I mean, it's up to you if you want to share what you've done in terms of prevention, but you've had other life experiences in front of those that will read the book, you will know what I mean when I say a lot happened from the time, you know, you got that diagnosis, with your family in so many ways. So how has it guided those choices for you? 

Tiffany

[00.18.37] I mean, 100% guided so many choices that came after, you know, one of the things with having Lynch, which is, you know, different for women versus men is that there's like a whole host of reproductive risks inherent with women. The recommendation is to have a preventative hysterectomy when you when your childbearing years are complete. The question then becomes when is ah, my childbearing years complete? What does that mean? How do I know if I'm done having children or not done having children? And so I ended up getting a hysterectomy when my second child was three months old. And I should note also, I discovered I had Lynch while I was pregnant, so there was a real whirlwind for me on the emotional spectrum of things of having this baby. And the fear of is, is this somehow affecting the baby and having genetic counselors? 

One of the things that's so helpful for, for me anyway, was the reassurance that everything else is fine. Like, this isn't something else that is, you know, everything is everything is a disaster, what have you. So we decided to have, um, a hysterectomy. I decided to have a hysterectomy. My husband was very supportive. I was also very on the fence. When will I do it? Will I still be able to breastfeed? You know, all these questions that I think a lot of women would be having. And when? How do I know if I'm done? And so had the hysterectomy. I was 30 years old at that time. And then there's a lot of recommendations around ovarian tests and ovary removal. I can barely say the word oophorectomy, I think is how you say it. And so there was always will. In ten years you'll deal with this. And it was funny when I was 30 to hear like ten years, ten years, it felt so far away. And then all of a sudden, you know, that happened as well. So it fully informed so many things. And I think these are irreversible medical decisions that you're making. And I think they really vary for every single person. Every person has to wrestle with those decisions and what the timing looks like for them. And they just they felt like the most personal decisions I could make. And also like I was totally ill equipped to make them. I had like wonderful counselor and wonderful medical team and still then had some hesitations down the road. Um, did I make the right decision? Did we act too rashly? And I think that that's just you can't undo the decisions that you've already made. And so I think trying to reach a place of a point of peace with those decisions and feeling truly in my heart that they were the right decisions. And I love my children and all of those things. And also, I think what it does is it really makes you think about the roads not taken in a way that you might not. Do if you weren't forced to make those decisions. I think we might have probably only had two children anyway, but if the decision had not been something you had to decide. You know, it always feels like the imaginary third child or something like that, you know, exists out there because of these choices that I'm so grateful to have. So that's I think the thorny piece of this is I wouldn't want it any other way. I think so often about what would have happened if my uncle hadn't have gotten tested. What would my life be like if I didn't have this information? So I think you learned to live with all of those things, and you just have to make the best decisions and live the best life you can with the information you have and the actions you've already taken. 

Sara

[00.22.28] Mhm. Yeah. Absolutely. That's that's so true. I think it's interesting that this was 13 years ago and even today, 13 years later, that is still the recommendation. Based on what we know about Lynch for women is to have a preventative hysterectomy with salpingo-oophorectomy if you can. Yours was, you know, much earlier than some people find, right? Uh, being 30 years old, and having to make that decision. And then to make the decision, the hard decision to keep your ovaries knowing that there's a possibility of that risk as well. Uh, especially with our family history. What you knew at the time.

Tiffany

[00.23.10] Yeah. And I mean, truly, it was. I am seen at the Cleveland Clinic, and I'm, you know, I was following the recommendations of this amazing team of medical practitioners that I had. And one of the things that, uh, the doctor who performed my hysterectomy said was, we can take your ovaries now if you want, but you have to balance that against bone health and all of these other things that your ovaries provide for you. And so every woman is different. And if I'd had a history of breast cancer, there might have been a different recommendation. And so you're really trying to do the best you can, everybody with the information that you have and be guessing, you know, what your risks and rewards might look like. 

Sara

[00.23.56] For sure. I think it goes to show to one, stay connected with your medical team throughout that process because I mean you were doing this in a time where we weren't questioning so much about hormone use. It was like, oh, you just don't take hormones if you don't have ovaries. And now that's all kind of flipped up on its head with all of this reversing of some of the key WHI findings. So yeah, there's a lot that we can we can have a whole ‘nother podcast on that topic. 

Tiffany

[00.24.25] So as you were talking, it had never even occurred to me that. Like, what if the recommendations had changed and like what I would be dealing with if all of a sudden the recommendations weren't the preventative hysterectomy like, I had never even had that thought until you said that. That like if they had changed, you know, a couple of years ago, what type of emotional response would I be having to them? So yeah, thanks for not dropping a bombshell on me. 

Sara

[00.24.50] It's it is a daily thing in some cases. Like if you keep up with the NCCN guidelines, I mean, you could you could overwhelm yourself with all the wonderful things that research is showing us on a consistent basis, which is amazing. But yeah, you can find yourself getting a little bit too far down, like, you know, asking those questions. In fact, I had somebody reach out to me on messenger. She has Lynch syndrome and she's wrestling on when to do a hysterectomy. Um, she feels like I have conflicting information on how effective endometrial biopsies are. And if I need to have my ovaries now, or if it's fine to wait until I'm closer to 50. I mean, it's really timely that I just got the message and you and I are having this conversation because you know what? I'm like, I can't give you any answers other than to say, here's a few things for you to consider and weighing your options. But this is ultimately what can you live with  in terms of making that decision. Because you're right, you make that decision, and it's the best decision you could make with the information you had at the moment. Right,

Tiffany

[00.26.05] Yes. Yeah. 

Sara

[00.26.07]  You know, you talking about guiding choices. And let's lead that now into in what ways has living with Lynch impacted the way you parent your sons now? 

Tiffany

[00.26.17] Yeah, that's a really good question. And it's one that I don't think I'm specifically like because of Lynch syndrome, I am doing things differently for the kids than I might otherwise. But I think about the ways that Lynch has maybe fundamentally changed me and how I think about my own life. So I think with. Living with something like like Lynch syndrome. It makes me really want to focus on what is important to me. And like I feel a huge amount of gratitude, um, for having had the chance to have this genetic information, to not currently be a cancer patient or have, you know, gone through cancer treatments. It's something I think I feel just really consistently thinking, I get to be here and what kind of life do I want to have? What kind of relationships do I want to have with my husband, with my children? Um, what type of work do I want to be doing? I think it's really thinking about, you know, I get to be I think it forces a little more intentionality in what your life looks like. So for me, with my kids, uh, having lost my mother before I was a teenager, um, now that I have teenagers, I don't have, you know, any memories of what it was like living with the mother and what a mother of teenagers looks like and had, you know, was, you know, raised by my dad, who is I love my dad so much. And I also think it's funny to look back and say, I'm ten years older than my dad was when my mom passed away. Like to be able to sort of give the that kind of perspective to things I think is really helpful. Um, I also think writing this book has made me need to live with my past in a way that I think a lot of people, if you're not writing a memoir and you're not mining your memories for how did you feel about things? So I think all of these things have sat really close to the surface of my existence while I've been doing this. Writing and living. And I think it makes me I'm acutely aware of what being a teenager was like. So I find myself, you know, reminding the kids to be, you know, very careful and telling my son, you know, I only have put on your bike helmet, I only get one of you. You need to last me my whole life. Like, you know, I feel like I just think about those things a lot and try not to, like, constantly talk about my fear of mortality and so on. But I think you just sort of live with it, like it's very much present with you and think, what will people remember about me and will? I have lived the kind of life that I want to live. And so I wake up every morning at 530 and I write, whether it's this book or, you know, other projects that I have. And I hope that I'm like showing the boys what it looks like to live the life that you want to live like a life that feels authentic to you. And so for me, it's it's those things I also, you know, I try to eat healthy, I try to exercise like everybody. I fall off the wagon and pull myself back up off of it and say things to my husband like. Feel so good after I work out the next time I go like a week without exercising. Can you remind me of how good I feel when I do this? So I think it's just trying to like, actually live the life that I want to be. And I'm so grateful to my body. You know, I think as you get older, you think, thank you for staying healthy, and thank you for being strong enough to keep me doing these things, you know, with my children and family. And so I feel like it's more on that side of things, like I'm not, you know, you can't have candy or you can't. I don't do anything like that to my kids because I want them to feel like as normal as possible. And I don't want them to live with constant fear. So I think I more try to model good lifestyle choices, and being a good person and living true to myself and hope that they can, you know, take that with them and feel strong when life will inevitably throw curveballs at them. Lynch related or not. 

Sara

[00.29.00] Yeah, absolutely. That that's that's really sweet. And as a mom, that definitely resonates with, you know, helping them make. Healthy choices and just knowing in the back of your mind, like, you know, and my older one. Uh, he's a little bit younger than Andy. He's 12, but I will say to him, I'm like, okay, buddy, we don't have the best family history. You gotta stop eating X, Y, and Z. But, you know, I totally live on Kraft Mac and cheese and, you know, granola bars, right? 

Tiffany

[00.31.19] Absolutely, yes. I think being able to say our family, you know, our family doesn't do well with things like that is a little bit of a way of helping them think about it without making it like too fear mongering for them when they're not really old enough to process all of that information. 

Sara

[00.31.34]

 Yeah. Yeah, exactly. It is a delicate it can be a delicate spot. And we've had, you know, friends and family and and people we know and love go through cancers. And, you know, at this age try to balance the not keeping things from them, the real world things, but also not so much detail, like you said, that they feel like they have to be fearful of it. Knowing as you know, as our children get a little bit older and they start to realize what it is that we're faced with as a family, whether they carry the gene or not…it’s ever present. And so let's, let's transition that. And that's a good segue into, you know, you've chosen to wait until your kids are 18, which is. Typically, the recommendation right for those in this space is to wait until your kids are 18 so they can make their own decisions about genetic testing. You know what's going into that decision for you and let's, you know, kind of get a little bit more perspective on that, sort of balancing that openness with protecting their childhood. 

Tiffany

[00.32.37] For me personally, I think it's helpful to know that Lynch doesn't usually impact children. And so that is just a helpful, you know, piece of data. Also to think about not wanting to burden them with information that they don't yet have, the emotional or like, mental space to really handle in a smart and proactive way. I feel that it might also change the way that like we treat them when they're too young. If we were to do some testing and know something now. I also spoke with a genetic counselor in relationship to this book recently, And she told me that 18 is the standard recommendation, but she said she doesn't even like to test people until they're in their early 20s. If they're willing to wait because your brain is still developing and you're still sort of learning, like how to manage your own life. And so that was just an interesting perspective for me to hear. You know, again, you know, everybody makes their own decisions and everybody has to sort of figure this out in a way that works best for them. But I think it became it. For me, it makes the most sense to give the kids a chance to be kids, and for them to have information in a way that they are emotionally ready to manage it and handle it. Yeah, yeah, I agree. I want to pull in some of the text related to your role of, you know, you speak to this in the context of motherhood, giving you a lot of things. You said motherhood has given me a lot of things, but it will never make sure I give my ideas, time and attention. And this is when you were talking about giving yourself time out of your day, pulling yourself from sleep and writing, which is amazing. I admire you for that for sure. 

Sara

[00.34.39] A part of it I want you to read from here is on page 208. This goes to the lesson you want your kids to embrace in your role of writing each and every day, or writing this book and and having that legacy left behind. 

Tiffany

[00.35.00] “As much as I wish my DNA was perfect, my mutation is also a permission slip, pushing me closer every day to the best life I can live. My best life requires finding words for the feelings agitating below my skin. It needs laughter and sunshine, movement and time outside, books, music, art and the space to try these things myself. I need to show my boys not only how to fight disease, but how to cultivate a life that brings joy. I see beauty all around me, everywhere, all the time. I see it in the perfectly drawn white chalk lines in the baseball field, in the way the dust puffs up when the players jog through the infield and hear it in, the other parents chatting all around. A younger version of me would have assumed they all have flawless lives, but now I know they're also carrying stories and heartaches and hopes invisible to me just as I am to them.”

Sara

[00.36.00] It's really beautifully written and what a legacy to leave for your boys. That that sentiment and that memory. They'll really hold that dear for sure. 

Tiffany

[00.36.09]  Thank you. 

Sara

[00.36.10] Okay. You know, throughout your book, you highlight lessons as we just spoke of, that you want your your boys to carry forward, like facing challenges with strength and living with gratitude as you've spoken to. Uh, which of those feels most important right now? So you said they're 13 and 16. What are you feeling right now? Mom, 

Tiffany

[00.36.49]

I feel like sometimes I feel like teenagers are the most selfish people in the entire world. Like, they were, like, designed at that point in life for their own self-preservation and to in pursuit of their own self-interests. And so sometimes I'm quippy. So selfish. You know, think about other people in this family. You know, the things that you say to teenagers when they're truly being teenagers. And so I think the gratitude piece is something I find myself always trying to cultivate in my sons. I feel like just really wanting them to be good people, be thoughtful, empathetic people who pay attention to others, and who are the kinds of people who just generally care about the world that we're living in, and who care about the other human beings in it. And I think there's a weird part of me that feels like, see, you're not perfect. We're not perfect. Like, we even if you can't see that something is going on, you don't know what other people are facing or dealing with and try to be a kind person. And I feel like with teenagers, it can be hard to see the kind person in them in some moments. And then you get these beautiful moments where you're like, okay, you're gonna be good, you're fine. You're you're saving your worst for me, you know? 

Sara

[00.39.21] Yeah. Well, and that's so true of, I think, just what we're seeing in society today, right, with, you know, social media, the pressures that they're having at school and just the discourse that we hear out there and that they're hearing in their homes or on the news or it's a lot, I think it's a little different than when we grew up where those things weren't as accessible. Um, yeah. And sure, your parents did inform you, but you didn't feel like that thought process was so stretched beyond your world, right? You just had your little bubble and your community. 

Okay. So let's let's talk about you in that sense now, like with what practices or perspectives help you stay grounded in everyday joy? I mean, even though we carry this genetic risk, and I love that you get up each day and you take the time to write. It's a huge aspiration of mine to actually do journaling, but I'm good for about a week or two and then I fall off. I'm like, okay, just maybe just try one thing at a time. I’ve got the podcast going and that's sometimes my like, okay, hey, I've been at this now for a couple of years. You know, even though I don't kick out episodes every week, I'm still coming back to the microphone. 

Tiffany

[00.39.25] That's great. Thank you. I love to write. Have two dogs. Have a garden. I love hanging out with my kids. I like to do yoga. I work in the arts, so I get to see people doing creative things all the time. I actually work in a library and I get to bring arts to a beautiful public space, so I feel like I have really done a good job of putting major foundational building blocks around me of things that bring me a lot of joy. And so it doesn't mean that I don't also get frustrated by a lot of things. So I think but I think part of that is that I'm also basically an optimistic, hopeful person by nature. And in reading the book, which is so emotional and there's, you know, all these emotional things. And I even cried talking to you already. But, you know, under all of that, like, I am a hopeful person and I feel an immense amount of gratitude just for the baseline of being like a person who generally wakes up and hopes for something good every day. I take a lot of photos of sunrises, you know, I like to see like small things that are beautiful bring me a lot of joy. So I feel like it's not major things, but I think it's like a I think I have a pretty good. Practice of doing things every day that bring me joy and happiness. And so those are the the things I think that, you know, you keep going back to. There's a quote that's something along the lines of the way you spend your days is the way you spend your life. And so I think having daily things that I enjoy, you know, I love waking up and drinking coffee and writing and seeing the sunrise. It is the perfect start to the day. And when I sleep in, my kids wake up before me. They immediately come downstairs and start asking, you know? Or they immediately need things from me like, I'm not the nice person that I am when I just have like my time to wake up and become the nice person I can be. I'm not always perfect, but by any stretch. But I think it's like I do a pretty good job of doing something every day that brings me joy. So it's great. I hope everybody can can do more of that. 

Sara

[00.41.56]  Yeah, yeah for sure. Well, and I think it ties well to your title of your book. I mean, you're living proof that you can live with genetic risk and, and sadly, some loss and still find joy. Yeah. And and so now when you talk about that with your, you know, the health choices, the way you approach life, a lot of this is rooted in your love of family. And clearly you're close to your siblings and to your dad. You all went through a lot with the loss of your mom and the other, you know, health challenges that your family has experienced. But. Tell me how that legacy of love. You know, leaving that legacy of love. What does that mean to you? 

Tiffany

[00.43.43] I think when I think about it in relationship to my children, it's that I don't ever want them there to be any cards left on the table or some words left unsaid that they can very clearly know. I hope they feel like they know me, and that they know that I would do anything for them. And, you know, I think that's sort of like the crux of, you know, my medical decision making was always like, well, I can't live with myself. If I thought, oh, well, I could have prevented this or something. So I hope that they can see that love is a feeling and love is also a lot of actions. Love is going to get my call and ask me every year, and my dermatology tests and all of those things. I think it's like I'm doing the best that I can do in making sure that I'm physically strong enough and healthy enough to be actively involved in their lives. And so I, you know, my goal is to become a very old woman  ad, you know, be there for a long time with them. And I hope that through, you know, my actions and, you know, the writing that I do that you know, they see and even writing they'll never see, but that they never feel like they didn't know me or that I left questions unanswered for them or something. So I think it's that living a life of being like, as honest as I can about who I am to them and that they, they know me and that they, um, in, in turn have that like safe space to discover who they are to grow from. 

Sara

[00.44.19] So if they listen to this conversation years from now, what's the one message you want them to carry with them? 

Tiffany

[00.44.26]  Oh, that they're so loved and that they're super strong and that there's nothing that the world can throw at them that they can't, but they have to face by themselves and figure out how to do on their own that they they have a good sounding board and a loving space to, to navigate the world from. 

Sara

[00.44.48]  It's good while you've given them a great foundation as, as evidenced in your story. 

Tiffany

[00.44.54] Thank you. 

Sara

[00.44.55]  I was going to have the question on here, and I can kind of reframe how we ease into this one about marriage and family life, evolve through the journey. But do you feel like we've answered that question a bit, or do you want to talk a bit more about Brian and his role? 

Tiffany

[00.46.28]

Yeah, I mean, I have an amazing husband. We've been married 19 years. We've been through a lot. You know, his mother has had cancer. His father has passed away. You've been married for a long time. You kind of go through all of the things life throws at you. We've definitely grown up a lot together. I think that we're both like the different versions of the same people that we've always been through all of this. I think that this is probably in spite of all that stuff. I just said, one of the hardest things that we've had to navigate because of the uncertainty for it. And. I think when you first when I first found out about Lynch syndrome, I don't know how it was for you. It didn't feel like a gift of information for me and for him. It felt like a ticking bomb, a thing that we had to really navigate. And I think, um, in doing that, we grew closer. We, you know, you tend to become you trust people and grow close to people when you kind of face hardships together. So I think that we definitely have done all of that. I don't think anybody in the world knows me as well as he does. And by knows me, I mean like knows my daily rhythms and moods and all of that stuff. And, um, there's a chapter towards the end where, you know, in  the book where I talk about, like my hormone levels were not what they should have been. And, um, I have a lot of feelings about, like, a, my, my husband telling me you're not who you're supposed to be. And it's like, quit calling you a hysterical woman, you know? So I'm allowed to have feelings. And so I feel like we're still, you know, we're growing and evolving. And I think that, you know, nobody thinks about these things. When you get married, you think only about like, the positive, like fun things that life will bring. And I feel just really grateful that, you know, our marriage has continued and that we, you know, still have I. I like to think we still have a very, very strong foundation of love that we're working from. And even when things are hard that we can always go back to that.

Sara

[00.47.16] It's so funny. I feel like you get to know Bryan throughout your book. And you you said this in your book as well. You said Brian seemed to enjoy rehashing the events of his life, understanding how they led him to where he was. I, on the other hand, preferred to live in the moment and let my past stay or belonged far away. And I just thought that really brought the two just the way you just described your two personalities and how you've been able to like, you know, really have that balance of he sounds like he's a really good listener, you know, and you're somebody who needs a sounding board. And so that that dynamic really complements each other.

Tiffany

[00.47.57] So yeah, I am so grateful for him. And life is so funny. And I think, you know, you were talking about the dominoes of decisions and, you know, it's. Funny because it was due to me living in a place I didn't want to live in, that I even met Brian. And so it's just, you know, the world is a the world is a funny place to be, and sometimes it doesn't feel like everything is totally random. So. 

Sara

[00.48.21]  Mhm. Okay. So as we start to wrap up, why don't we talk through really a message that you want your readers to take away from your book, like beyond those facing genetic risks. Like what do you hope any readers going to take away from living Proof? 

Tiffany

[00.48.41]  I think that any hard situation that you go through fundamentally changes who you are, and it helps. I think that there's certain things not everybody's going to go through genetic testing, but people go through things like divorce or, you know, other forms of loss or illness, and those things change you. And I think I don't want to say, well, it doesn't kill you, makes you stronger because I don't think it's that simple. But I think we learn from those things that happen to us in our life. And I think that we all have an inner strength that we can't be afraid of. You know, trust that you're strong enough to get through the hard thing that you're going through, and that on the other side of it will be a different version of who you are. But that what lies in front of you can still be really wonderful. And I think if this story was only for people going through genetic testing, I while there's a lot of us, I don't think that it would be, you know, enough to have a book written about it. Um, but I think that we all go through things and they shape us and they change us and we learn about ourselves. And my grandma always used to talk about how she's like, I'm 75 years old, and I still have so much learning left to do, and it was always this wonderful reminder that you're going to go through these seasons of your life, and some seasons are much harder than other ones, but that if you're around long enough, you will just keep learning and continue growing. And there's still, I think, a lot of joy for all of us to find. 

Sara

[00.50.42]

Mhm. Absolutely. That's a great message. You have a launch coming up here. So tell me how listeners can connect with you, follow your work and get maybe pre-order a copy of your book. Tell us how we can stay in touch with you and get excited for your upcoming launch. 

Tiffany

[00.50.47] Thank you so much. Uh, my website is Tiffany Graham krakowski.com, and I have a newsletter you can sign up for on there. I don't send too many newsletters, but enough to stay up to date on things. I'm also on Instagram at my full name. There's a theme here, and so my book can also be ordered on any website where books are ordered. So Amazon or bookshop, you can ask your independent bookstores to order the book as well. So I would I would love to connect with people on either through messages on my website or on Instagram. 

Sara

[00.51.25]

 Awesome. Okay. We will put all of that information into the show. Notes. Well Tiffany, thank you so much. Really appreciate you sharing your story and coming on the show to talk to us about your terrific memoir. 

Tiffany

[00.51.40]

 So thank you so much for your time and attention, and I'm just so grateful to have met you. 

Sara

[00.51.46]  Yeah, likewise. As you mentioned, it does have emotional ups and downs. There's a little bit of humor first in there every so often, but there's something for everyone in this story. And, you know, going through Lynch syndrome, the commitment to your family and the lessons you've learned and have captured in Living Proof. It's just a great way to remind us that while our genetics may help shape part of our story, it's really that love that you you really sprinkled throughout your story and the resilience that define that legacy that we're going to leave behind. So I really appreciate that about your story. 

In fact, I want to close with a point about halfway through the book, you were entering Lake Erie and you passed the Cleveland Browns Stadium and the Rock and Roll Hall of Fame. So I love you're giving us a picture because I have been there, maybe not floating on the river, but I have been to Cleveland to see the stadium and the Rock and Roll Hall of Fame. And you said, “I had a fleeting thought that someday Lynch Syndrome wouldn't be the first thing I thought about in the morning. That maybe if my life were a guitar, Lynch could become only one string instead of my entire song.” That just, like, puts a great picture. Right. That's something such a simple metaphor could really be something that's so defining. So I think that's really beautiful.

Tiffany

[00.53.09] Thank you. 

Sara

[00.53.10]

 And I'm learning to play the guitar. So that's another reason why I picked up on that line. 

Tiffany

[00.53.15] Congratulations. That's your form of journaling.

Sara

[00.53.16] Yeah. Oh thank you. Yes. There you go. I love it. 

All right, friends. So for those listening, Tiffany's memoir, Living Proof How Love Defied Genetic Legacy, will be launching on October 21st. And again, I can tell you from an early draft, it's moving. It's honest and full of hope. And so it is a book you don't want to miss. It's honestly, too a pretty quick read, because the way that you have the story kind of broken out in the timelines and, you know, you really get through the story effectively. And it was really difficult for me to put it down. So I really enjoyed it. If you want to learn more about Tiffany and her work, we'll put her website in the show notes and and maybe any other references that we discussed in the show today. So thank you again for joining us for this conversation. Until next time, remember. Even in the face of uncertainty, there's always room for hope, resilience and love.

Guest Bio:Tiffany Graham Charkosky is a writer whose essays and short stories explore love, family, and human connection. Her memoir, Living Proof: How Love Defied Genetic Legacy, weaves together her family’s experience with Lynch Syndrome, her own journey through genetic testing and prevention, and her reflections on resilience, motherhood, and hope. Tiffany lives in Northeast Ohio with her family and has worked in the arts for over twenty years.

Connect with Tiffany:

🌐 Website: tiffanygrahamcharkosky.com

📚 Order Living Proof: How Love Defied Genetic Legacy (launches October 21) — Amazon link placeholder

📸 Instagram: @tiffanygrahamcharkosky

Connect with Sara:

🎧 Listen to past episodes: The Positive Gene Podcast🌐 Website: positivegenepodcast.com

📸 Instagram: @positivegenepodcast

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.

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