Sean Swarner and Dr. Mark Lewis | Conquer Cancer, the ASCO Foundation

Dr. Mark Lewis:
This podcast is brought to you by Conquer Cancer, the ASCO Foundation. Our mission is to accelerate breakthroughs in life saving research and empower people everywhere to conquer cancer. Welcome to Your Story is a podcast where we hear candid stories from people conquering cancer. I'm your host, Dr. Mark Lewis.

Of the countless reasons people might give to not climb Mount Everest or run a marathon or trek to the North Pole, Sean Swarner might have the most compelling. He only has one functioning lung, but he decided to do all those things anyway and then some. In 2002, he became the first cancer survivor to summit Mount Everest. In the years that followed, he became the first cancer survivor to complete what's known as the Explorer’s Grand Slam, a feat that requires summiting the tallest mountain on all seven continents and completing 60-mile treks to both the north and south poles. On skis. He's completed the prestigious Hawaii Ironman Triathlon. He made three attempts on Mount Denali, the tallest mountain in North America and one of the world's most dangerous, ultimately reaching the summit in 2017. Most recently, he completed the Great World Race, successfully completing seven marathons on seven continents in seven days. But long before any of that, he faced and survived pediatric cancer twice. And he says everything he's done since then, the summits and the finish lines, has been with the hope of reminding others, particularly cancer survivors, of a simple message: If a guy with one lung can do it, so can you.

Welcome Sean. It's an honor to have you with us today.

Sean Swarner:
Hey, I appreciate that. That was a great intro. It's almost like we connected before the show to go over what we should talk about.

Dr. Mark Lewis:
A little bit of a peek behind the curtain there. No, honestly, reading a list of your accomplishments, it made me tired. And also, I'll be honest and we'll talk about this, it has already started to motivate me some. But before we get started, let's just hear where you're joining us from today.

Sean Swarner:
I am in beautiful sunny Puerto Rico. It's not hurricane season, so it is a nice place to be.

Dr. Mark Lewis:
Oh, that's lovely. Fantastic. Obviously, you venture to some cooler climes as we'll discuss. So, Sean, in all seriousness, you have such an amazing story that, you know, as we did prepare today's podcast, it was hard to know just where to begin. As an oncologist, I think it makes sense to start at the beginning. So to be diagnosed with cancer not once, but twice before adulthood had to have been a traumatic and formative experience for you. I know some years have passed since then because I believe you're around 50 now, but do you mind telling us about your experience with pediatric cancer?

Sean Swarner:
In all honesty, it has shaped me to be who I am now. You already mentioned how old I am. So let's go back, if people are good at math, to when I was 13 years old, which was the first cancer. I know, back in 1988, and I was an eighth grade freshman in high school. What most people were concerned about at that age was probably where they were going to sit at lunch, being popular, worrying about who they might go out on a date with for, I don't know how long dating lasts when you're 13 years old, but for the next two weeks, maybe. Maybe a long term relationship.

Dr. Mark Lewis:
Short half life.

Sean Swarner:
Yes, exactly. So when I was diagnosed with the first cancer, advanced stage 4 Hodgkin's, I remember, because of the prednisone, I ballooned up my body and I just gained a tremendous amount of weight. And I literally remember looking at myself in the mirror before getting into the shower. So I was in the bathroom looking at myself in the mirror, and I couldn't even recognize who was looking back at me. And I remember going into the shower and literally collapsing to my hands and knees. My hair was falling out in chunks. The water was rising up because my hair was clogging the drain. And I remembered at that moment that while my friend, my neighbor, was getting ready for school, he was worried about everything we just mentioned, I was literally worried about fighting for my life. So it changed a little perspective in me. But I also realized that I didn't want to focus on not dying. I wanted to focus on living.

Because when my parents first told me about the diagnosis, they never mentioned the word cancer. They said, “Sean, you're sick.” “Sean, you're going to get better, and we're going to do everything we can to get you through this.” And because I implicitly trusted my parents, I believed them, so it must be true. So that seed of cancer technically never got planted. It was, “Hey, you're going to get better.” So because of that and because of the belief that they instilled in me, that's why I didn't want to focus on not dying. I wanted to focus on living, and I wanted to start living my life to the utmost, because, as we all know, we don't know when our lives are up. You know, my Grandma just turned 102 years old.

Dr. Mark Lewis:
So can you tell us a little bit about the circumstances of your second diagnosis? So you've painted a picture- when you were 13 years old, you were diagnosed with advanced Hodgkin's. It sounds like it was very important, the way your parents phrase that to you, partly in sort of instilling this really incredible mindset that you've cultivated ever since. But tell us about the second cancer diagnosis.

Sean Swarner:
Absolutely. It was interesting because the second cancer wouldn't have been discovered if I didn't have the first cancer. Because I was going in for a checkup for the first when they found a second. The first cancer wouldn't have been found unless I had a knee injury playing basketball. So I think I have the world's worst good luck, and things just kind of play out in a good way. So I was going in for a checkup for the first cancer, when they found the second cancer, which was completely unrelated. It was actually Askin sarcoma, or primitive neuroectodermal tumor.

When you go through cancer and you become a patient, you learn how to say these words that have 15 syllables in them, and they just roll right off the tongue.

So in one day, they found a tumor on an X ray, they did a needle biopsy, they removed another lymph node from my neck. They put in a Hickman catheter, they did a thoracotomy. So they cracked open some ribs, removed the tumor, put a drainage tube in, and started chemotherapy in less than 24 hours, less than one day. And because no one's ever had Hodgkin's and Askin sarcoma before, I had a 0.0000000001% chance of survival. The doctors had no idea what was going to happen. I was a test. So I chose again to not focus on the 99.99999999% death rate, I chose to focus on the 0.0000000001% success rate. So it's like, “Hey, I have a chance and I'm going to do everything I possibly can to live every moment to my best, my fullest, and push myself as much as I possibly can when I did feel good and then just kind of chill out, relax when I didn’t.” Because I knew those days in, those bad times were going to pass.

Dr. Mark Lewis:
That's a remarkable amount of self knowledge and self awareness for a young person. Of course, like you said, you kind of go through this accelerated maturation process with not just one cancer, but two. And you almost certainly know this, Sean, but just for our audience, so we've talked some on this program before about what we refer to as adolescent and young adult or AYA cancers. As it turns out, you had two, not one, but two, of sort of the stereotypical AYA cancers between lymphoma and sarcoma. And I think you also bring to my mind as an oncologist now the limit of statistics. So there are all kinds of statements out there that tend to cast a light of suspicion on statistics. Mark Twain, for instance, famously had a quote about ‘lies, damned lies and statistics’. His point being is that you can certainly skew things to sort of justify your argument if you manipulate the numbers enough. But really, your story, to me, is a caution to oncologists that we really need to admit the limits of what we know. And when our evidence based, when our literature doesn't contain a patient like the one in front of us, it's, I think, appropriate to admit that, I mean, you were really in almost uncharted waters, both you and your doctors, it sounds like.

Sean Swarner:
I would agree with that. And I would follow up by saying doctors do everything they can to give the facts, but delivered with their opinions. And I think that they're making a judgment call based on what they believe is possible. It's almost like if somebody comes up to you and you mentioned it earlier and they said, “Hey, I'm going to run seven marathons in seven days on all seven continents.” And most people think, “Oh, that's not possible,” and you become a reflection for how they feel about their own potential.

Dr. Mark Lewis:
Yes. That's really fascinating. Yeah, I agree with you. I think what I'm already sensing in you is this strong kernel, again, hardened through really difficult principles of medical treatment, your strong sense of if something isn't absolutely impossible, it means that it is technically possible. And I'm starting to see that kind of play out in both your medical narrative and of course, the remarkable things you've done with your athletic endeavors.

So let's talk. You already kind of framed the fact that your adolescence was not typical. And what you're saying to me is entirely resonant because right now at home I have a 13-year-old 8th grader. And you're right, he's already encountered some pretty serious health issues in his life. But his concerns are a lot more like the typical teenager you described. And what you were dealing with in the shower, watching the drain clog with your own hair, that is just such an evocative image.

So let's fast forward a little bit. Let's talk about your rather remarkable athletic career, is how I might put it. You've really accomplished some remarkable feats, especially mountaineering and endurance. But what was the first domino to fall? How did we get from the, kind of, your origin story in that world all the way into the Great World Race? Take us through that.

Sean Swarner:
How long do we have? The first domino was probably when I was working on my master's, my doctorate, for psycho oncology. And I, again, looked back in the mirror, and that time I could recognize myself physically. But morally and ethically, I couldn't recognize who I was because I grew up in a small town in Ohio, a small community farm boy, my backyard was a cornfield or a bean field, depending on the season. And this time around, I was in Jacksonville, Florida. I was a bartender at one of the largest clubs down there, working three jobs while working on my doctorate, and that's when I realized if I kept going down this path in my life, I would be so far away from the young Midwest young man that my parents raised. So I dropped out of school, I quit the jobs, I quit everything, and I had to spend time on me. If you don't take that time out to discover who you are on a deep level, you're never going to be happy. You don't truly know what your personal core values are. And I had fallen so far from that. That's when I decided because of the cancer, because of my mindset, and because of the mind-body connection that I firmly believe in, I wanted to use what I had been given to give back to the cancer community by becoming the first cancer survivor to climb Everest. And , in my mind, kind of jokingly, I thought to myself, if this fool who's had two cancers and one lung can climb to the top of the world, that might inspire some people.

Dr. Mark Lewis:
Yes, yes, to say the least.

Sean Swarner:
So that's what I did. I literally moved from Jacksonville, Florida, because I don't know too many mountaineers who live in the state of Florida. It just didn't make sense.

Dr. Mark Lewis:
Geographically, yeah.

Sean Swarner:
I moved to Colorado. I literally, with my brother, we lived out of the back of our giant and very expensive Honda Civic and we camped, looking for sponsorship, looking for corporations to help out. At the time, my office was a pay phone bank and the library. I get on the pay phone and I'm like 1-800-whatever the AT&T calling card digits that I had, and I punched those in and I'm like, “Hey. I'm Sean Swarner. I'm a two-time cancer survivor. I have one lung and in nine months I'm going to go climb Mount Everest. Hello?”

Dr. Mark Lewis:
Is the connection good?

Sean Swarner:
Yeah. I think we lost you. People just didn't think it was physiologically possible to climb the highest mountain in the world with half your lung capacity. So after I got sponsorship and again, from my perspective, I started looking at things a little bit differently. And as opposed to going towards those corporations, I thought, who makes the stuff for those companies? A big light bulb went off. GORE-TEX. GORE-TEX makes the fabric for all of those outdoor companies. Call up GORE-TEX, that's when things started to fall into place. And that's where the domino came. The big giant of GORE-TEX came down and put everything in place. And I started picking up sponsors and I decided, okay, this is going to happen. So literally nine months after moving to Colorado, I became the first cancer survivor to climb Everest.

Dr. Mark Lewis:
Absolutely remarkable. What strikes me is you took this tremendous faith in yourself and then what you needed is you needed one other person or entity to share even a tiny fraction of that faith. And then you took that as kindling and turned it into this really impressive raging fire that kind of matched your ambition. Really incredible, Sean. Just again, your self belief, your motivation, and again the fact that you took time to sort of self assess. What I see happening is sort of the treadmill effect where we sort of get on a path that we think is going to lead us to some pre-specified goal. And it's very easy for that to become automatic and not mindful. So I applaud you for your mindfulness.

Sean Swarner:
With the treadmill concept and looking at what I did, to be honest with you, there's no difference between me or anyone else. It's all based on your perspective. And it also goes back to the words that you speak to yourself, because how you talk to yourself and the words you choose can create your future.

So how many times have you, or anyone else who's listening, told themselves, “Well, I don't really know about that. I'm not so sure. I don't know. I'm not in shape enough, you know, I haven't studied enough. I'm not an expert on this subject.” Would you be friends with someone who is that negative to you? Why do you do it to yourself?

Dr. Mark Lewis:
Exactly, exactly. So well said. That internal monologue, or as we might be kind of framing here, even a dialogue is so crucial. And I love the idea of you sort of manifesting positive outcomes first through positive self talk. That's a really important lesson.

Sean Swarner:
The Great World Race happened because– And just so you know it wasn't just me doing this. There were 30 or 35 other crazy individuals missing a couple brain cells doing this as well, because some people somewhere think that physical pain means enjoyment. And there's type one fun, type two fun, and then there's type three fun, which I just found out, which is you're not having fun in the moment, and later on, it's still not fun. So this was type one and two. It was enjoyable in the moment and it is also enjoyable now. But again, I wanted to do it to continue proving to not just myself, but the world that, literally, it's only impossible until it's done.

Dr. Mark Lewis:
Yeah, I think that quote, I think it is attributed to Gandhi, but actually, as you're listening, you also strike me as a far less profane version of David Goggins, who I've heard also sort of talk about the virtues of pushing through the pain to get to the reward that's on the other side, which I think is one of the categories of fun that you just described.

So really, again, incredible feats, Sean, and as you said several times, I think one of the things I already admire about you is your selflessness in the sense that you've said a couple of times I think, “Listen, this isn't just about me and my own motivation and my own accomplishment.” You really want to inspire other people to really, I think, explore their full potential. So having said that, I want to acknowledge that some of our listeners are immediately going to start thinking about, again, the practicality and even the fiscal barriers to all of this. So these things you've accomplished aren't just demanding in terms of time and physical ability. They also require resources. And even the cheapest attempt on Mount Everest, as I understand it, would still cost someone on the order of tens of thousands of dollars, not to mention months or years of training. So I know that sounds, and I know what you're going to say, to some people almost insurmountable. What would you say to someone who's thinking or saying, “I could never afford that. I could never find time for that”?

Sean Swarner:
I would say that, if it is important to you, you will find a way to make it happen. Because essentially we create our own time. I can explain that a little bit better. But we put time and effort into what matters most to us based on our core values. So by painting a scenario, let's just hypothetically say you have an 8-year-old boy at home, and you're sitting in your office and you're working, and he comes in and says, “Dad, let's go play catch in the backyard.” And you're like, “Man, look, I'm sorry. I don't have time right now. We'll do it later.” Same scenario, you're in your office working, he comes busting through the door and he says, “Dad, I just stepped on a rusty nail!” Are you going to have the same reaction?

You create time for what's important to you. So if you want to get in shape, if you want to climb Kilimanjaro, if you want to do Mount Everest, if you want to run a 5k race, if you want to do whatever it might be. You may not climb Everest, but that doesn't mean your journey is any less difficult or it's easier than mine. So just find something that you want to do and start at the end and work your way backwards to figure out how you can make it happen.

Dr. Mark Lewis:
Yes. Oh, I love that process. Yeah, that's sort of interesting. Sort of figure out the objective and then work backwards. That's really pragmatic advice.

Okay. So at your age, and again, I'm not trying to paint you as elderly, but I think there's been some years elapsed between your two cancer diagnoses and the present day. A lot of people who experience what you did as a teenager, such a harrowing experience, not once but twice, would have put it all behind them or tried to, kind of compartmentalize all of that, one might even say trauma. But you've made cancer, both conquering it and supporting those facing it, almost foundational, it seems, to your existence even now, decades later. Did you ever imagine a time where cancer would just be kind of a blip on your radar, no longer a part of your life? Or did you realize again as a young man, as you were going through this process of self discovery, that was something that was going to be a part of you indefinitely? Or maybe even something you think about daily?

Sean Swarner:
It's interesting. I think about cancer daily. It will never be a blip in my life. Because I believe the time that it happened in my life, at such an impressionable age, I think really molded my mindset, it molded my life in a way that I decided to use it for good. And I chose to see it as a good thing as opposed to a lot of people who, like you said, just want to put it behind them. And there's nothing wrong with that. If that's what you want to do, fantastic, go for it. But also, for the longest time, I used to go in for my annual checkups, which I do still, I go in yearly for the blood work, CBC, platelets, all that fun stuff, and I was terrified. That term ‘scanxiety’, it's real, until I realized at some point I was letting a six letter word control my feelings and my emotions. So I stood in front of the mirror, and if anybody wants to do this, by all means, please do. I stood in front of the bathroom mirror and I said that word cancer out loud 50 times. Cancer, cancer, cancer, cancer, cancer, cancer. And when I got to about 30, I started laughing at myself. “Why am I so terrified of it?” Every time it passed my lips, the control and the emotional aspect of the word diminished. Little by little by little, it kept going further down and further down and further down. It will never be a blip. It doesn't terrify me anymore. If I get cancer, knock on wood it never happens, if I get it again, that's just the way it's going to be. But I'm never going to sit at home and be terrified and focus on something again, focus on something I don't want to happen. Because worrying about something is a lot like being in a rocking chair. It gives you something to do to pass the time, but it doesn't get you anywhere.

Dr. Mark Lewis:
Yeah, just listening to you talk, I really, I feel like I want to run through a wall now, Sean. So the motivation that you're able to stoke in other people is truly remarkable. I mean I feel it. I really do, authentically, I feel it talking to you.

A couple of things really spring to mind as we wrap up our conversation: One is, if it's okay to invoke in a secular setting, I was reminded of the Serenity Prayer that's kind of integral to many recovery programs where people ask for the serenity to accept the things they cannot change, the courage to change where they can, the wisdom to know the difference. And I think one of the things that I find remarkable about you is you refuse to allow yourself to be reduced to a statistic, certainly not odds that are unfavorable to you. You just don't accept those. You kind of shirk them off and move on, which is really amazing. But you've really, I think, pushed the limits of understanding what it is that you can control. And I think that's just an enormous testament to your self discipline.

I'll tell you something also is that I'm a big believer in alchemy. And what I mean by that is, as an oncologist, I see bad things happen to good people, to put it very reductively, all the time. And what really I find truly inspiring about the patients in my practice is that very few of them wallow in self pity for very long when they actually, I think quite rightly could. Many of them actually start asking a lot of the same questions you have, just in different ways, like, “How do I make the most of whatever time I have left and how can I be of service to other people?” And it's really incredible to watch them transform what could be a wholly negative experience and sort of find the parts that are positive.

And then finally I have to sort of end by invoking my own father. Neither he nor I are endurance athletes like you are. But you actually still have something common with my dad that you don't know yet. So the reason I went into oncology is my father was diagnosed with cancer when I was 8 and he died when I was 14. And in between, he had a lung removed. Now, again, he wasn't scaling summits like you, but he was a professor and a minister, and so his speaking voice mattered a great deal to him. So his Everest, if you will, was getting back in the pulpit and getting back at the lectern. And he called it, you're going to like this, I think, he called that ‘the slow puffing process of proving the lung’s redundancy”. Meaning he was like, “Okay, if I make my living and I find my joy in words, specifically the spoken word, I'm going to make use of the lung I still have.” And so rather than sort of taking a glass half empty approach, he really looked at it as half full. And just like you, he kind of seized upon every opportunity to make the most out of life. His key quote that I always love to share both with you and people in this podcast is he said that “Cancer was an opportunity, however brief or lengthy, to discard the trivial and the shallow and to fill every moment in relationship with meaning, intensity, and value.” And I share that quote with you because, I mean, you've lived it like you have done these feats that, to “mere mortals” like us seem, again, almost unattainable. But one of the things I'm really struck by today is your humility and your message that, if you put your mind to something and you realize that, yes, the future is never absolutely certain, if you allow fear to limit you too much, then you're right. in the effort of not dying, you might also not be truly fully living. And I just find your whole message and your whole narrative just incredibly hopeful and inspiring. And I really, really appreciate you sharing with us.

Sean Swarner:
That means a lot. And I also appreciate you sharing about your dad. And one of the biggest underlying themes through this whole conversation, and it feeds in incredibly well with what you mentioned about your dad, your dad was passionate about, you said, the spoken word, but if you look a little deeper, I'm guessing because of what he did, he was passionate, not about the spoken word, that was the vehicle for his faith.

Dr. Mark Lewis:
Yes, exactly right. Exactly right.

Sean Swarner:
So he wanted to share that with others. And the message he gave others, he was passionate about his faith. And the underlying theme I'm sensing here is the biggest component to whatever you're doing in life is figuring out why you're doing it and what it means to you. So, like I said before, you may not be climbing Everest, but you might have an Everest to climb. But figure out what it means to you. If you've ever cared about someone or have ever had someone care about you, then you have something worth fighting for. If you value family, then it's about that. Find a deeper purpose behind your actions to give it value to you, to have a deeper meaning behind what you're doing.

Dr. Mark Lewis:
And to me, Sean, and I don't think we've mentioned yet, so I've had cancer myself and I viewed it and it took a while to get there I'll be honest, I viewed it ultimately as sort of a shot across my bow that reminds me that even though I'm an oncologist, I'm not immune from the same diseases that I treat. And it really did make me– I'm grateful for this awareness - it made me very aware of my own mortality, my own finitude. You have said yourself, either directly or obliquely, that sort of time is the ultimate commodity. In fact, you figured out how to get funding, you know, through GORE-TEX. But ultimately it strikes me that money was not actually your biggest obstacle. It was again, sort of stoking the fires of your own self belief. So as we sort of end with the definition of what it means to conquer cancer, what I've heard from you today is you've faced some truly staggering and steep odds, both literally and figuratively, and you've conquered them. Any final words about what conquering cancer has meant to you that you might impart to our audience, Sean?

Sean Swarner:
I do, but you brought up something that I haven't thought about in a while, but obstacles and getting over things. And honestly, my biggest obstacle is getting over, even now, getting over looking in the mirror and seeing that young man who's battling cancer still. Because no matter how far away and how removed I am from the disease, it still will be a part of my life. And sometimes when I look in the mirror, I still see that 13-year-old boy fighting for his life. And for anybody who's going through cancer, I would tell you to embrace it, not necessarily enjoy it, but know that you can get through it, and afterwards you will be thankful for the experience that you went through. Because it's your choice to either suffer or be in pain. Pain is something that you don't have a choice on, but suffering is up to you.

Dr. Mark Lewis:
Yeah. And I think a couple of things that come to mind. One is when you talk about what a formative experience it was to have cancer as an adolescent, there's this quote I’ve heard a couple of times: “The child is the father of the man.” And I think that we have these experiences in adolescence, they do shape us into adulthood and it's appropriate to acknowledge that. But more so, I would say that regardless of the age when you're diagnosed with cancer, I think it's fanciful to pretend that it ever won't be part of your identity thereafter. I know it's kind of a double negative. For me, my father also, he strenuously objected to and tried to avoid the term ‘cancer patient’. He didn't like the way that cancer got precedence there. He much preferred the term, even though it's slightly clunkier, patient with cancer, because you don't want the cancer to define him.

What I ultimately find definitional, as you've said many times, is not the diagnosis, but our response to it. I think as long as that's consistent with the person's own values, they don't need to necessarily be climbing mountains or giving speeches or any of these things. I think it's ultimately realizing that there is more to you than your disease, there's more to you than your treatment. But you can take, I think, some solace in the fact that some people have tread paths like yours before, maybe not yours entirely. And look at you, Sean, when you were being quoted statistics, it turns out those statistics were meaningless for you because you ended up blazing your own trail. And now, hopefully, that sets a precedent for somebody else. So, again, I've really, really enjoyed getting to know you today. Your story is just absolutely incredible and really, really value your willingness to share it with others.

Sean Swarner:
I appreciate that. And you're right with the cancer, it'll be part of your identity, but you get to choose what part it becomes. And looking at the numbers that you mentioned, the 0.000 whatever, in my case, it was 100% survival rate.

Dr. Mark Lewis:
Yeah, Yep, that's exactly right. I was once quoting statistics to a patient. I was getting really into the weeds and decimal points. He said, “Doc, it doesn't matter. For me it's very binary. It's either 0 or 100.” So he's like, “You go ahead and do what you're going to do and I'm going to do what I'm going to do.” And I thought that was kind of a beautiful sort of form of shared decision making there. The numbers only take us so far. I think the narrative ultimately is what wins. So, Sean, with that, I'd like again to thank you.

And I'd like to thank you for listening to this podcast, which is brought to you by Conquer Cancer, the ASCO Foundation. Conquer Cancer is creating a world where cancer is prevented or cured and every survivor is healthy. You can make a gift at conquer.org/podcast. The participants of this podcast report no conflicts of interest relevant to this podcast. Full disclosures can be found on the episode page on conquer.org. 

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