The Life-Changing Diagnosis

Published Jul 15, 2021, 7:02 AM

Scott, a young researcher who builds cancer detection tools, has spent his entire adult life trying to avoid getting cancer. He is now facing his own stage 4 diagnosis.

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Pushkin. I felt like I was doing pretty much everything in my power to not get cancer, and yet here I am. That's Scott. He's a software engineer, and he builds computer programs that help doctors detect breast cancer and medical scans. He's also spent pretty much his entire adult life maximizing his physical health. Last year, at the age of thirty two, Scott was diagnosed with stage four bone cancer. He's had to pack up his life in California and moved to Texas for treatment at MD Anderson Medical Center. He's undergone multiple rounds of impatient chemotherapy, and doctors have had to amputate his right leg and remove a vertebra from his spine. I think there are a lot of ways in which I think I've matured and softened already through this experience. And I think maybe that's just our instinct to try to find meaning in whatever tragedy or adversity we experience. But I do think there's been a lot of change, hopefully for the better. I mean, it would be a shame if not only where my body compromised, but my personality also got worse. Most of the conversations we've heard on a slight change. Of plans so far are from folks who've gone through a big change and are out the other side now reflecting back. But Scott is still undergoing treatment, and in our conversation he's processing this big change in real time. I'm sure of how stories going to unfold, but so far, one thing's surprised Scott. He's handling this change far differently than he thought he would. I'm maya Shunker, and this is a slight change of plants, a show that died deep into the world of change and hopefully gets us to think differently at that change in our own lives. I've known Scott for about two years now. We don't know each other super well. He's a friend of my husband's, but he shared pretty early on that he is a total health nut. I remember the first time I had dinner with Scott. Not only did he pick out the healthiest restaurant in town, farmed a table, organic and vegan, he also chose the healthiest item on the menu. I'll put it this way. If there's rigors evidence out there that some health behavior works, I promise you Scott's done it. He's a vegan. He does intermittent fasting and high intensity interval training, and he adds turmeric and chiass to his food whenever possible. I definitely had a certain amount of rigidity surrounding health. I was adamant about getting a certain amount of sleep, adamant about eating the certain correct types and quantity of foods. It seemed like an outlet for my control freakishness. So I had read the nutrition book How Not to Die, and I was pursuing a lot of those principles pretty faithfully. The goal was to be fit and to look fit and to perform my best. The goal was certainly not to avoid death. It was more a fear of diminishment. One of the ways Scott tried to stave off diminishment was to play sports. While in grad school years ago, Scott was playing soccer and sprained his right ankle. Years later, in the fall of twenty nineteen, he was out jogging, something he did fairly regularly, when again he experienced pain in his ankle, and I sort of attributed it to that earlier injury. I think it was the end of twenty nineteen where I thought, I think physical therapy would help, and so I worked through the PT and it just didn't get better. And I'm really diligent about these sorts of things. I'm like the only person who ever does their PT exercises, all of them every time. I remember sort of getting out of bed in the middle of the night to go to the bathroom, and I would sort of be limping and hobbling, and it just kept getting worse. And at a certain point, I said, I need to see somebody about this. I had it some suspicion in the back my mind that it was something nastier than a strict sports medicine issue, like it could have been an infection or some fracture that wasn't healing. I went to go see somebody who ordered x rays, and the x rays were a little ambiguous or concerning, so they sent me for an MRI. I got an MRI and they said, okay, well you have some tendinosis, but there's also something going on with your bone. Did you ever think at any point that it might be cancer. I mean, I know you said you thought it could be nastier than a simple orthopedic injury. That did cancer ever cross your mind? No, it didn't. It was listed among those things, but it just felt too remote to believe. I also felt like I was doing just about everything in my power to avoid getting things like cancer. You know, I thought it was maybe an inevitability that I would get something like prostate cancer, which is sort of rampant in both branches of my family. But that was something for sixty year old me, not thirty something exactly. Can you bring you back to the moment where you ended up getting the definitive call from your doctor. Yeah. We were in a car driving towards Santa Cruz and we got connected with my orthopedic surgeon, and they explained that they thought it was cancer and that it should be removed surgically, and that the nature of the cancer probably warranted a very intense regiment of chemotherapy, and that the presence of these other spots in my skeleton suggested that it was a fairly aggressive disease. It would not be unreasonable to describe my condition as multifocal osteo sarcoma. And the five year survival rate for patients with this diagnosis is about thirty percent. So I think that is the first time that all of that that terminology and those numbers kind of aligned and we were faced with the magnitude of the situation. Do you remember what your first reaction was, what you thought. Well, I was with Logan at the time, who is now my wife, and I think there was a sense of responsibility. I mean, we had been we were not yet married, we were engaged. I think my mortality came into relief in a way, and I wanted to solidify our bond both between us and also in the eyes of the law as it pertains to power of attorney and inheritance and all that stuff. So I think some of those logistics rushed forward and thought about tying the knot. Scott had to make some fast decisions after he got that call from his doctor. In the span of two weeks, he and Logan got married in Golden Gate Park, and Scott decided he was going to seek the most aggressive treatment possible, which meant amputating his right leg below the knee. The day before their weddings, Scott and Logan threw an unusual kind of party, a foot roast. A foot roast is sort of a comedy roast in which my friends teased me about both having cancer and about preparing for an amputation, and sort of everybody came up and did a few minutes of stand up so again osteo sarcoma. Of course, Scott gets basically the Harvard of cancers. I'm not sure if you've heard of it. Only about one in three hundred thousand people get it each year. I think everybody feels uncomfortable with illness and with disability, and I think this word amputation amputee is really ugly, and I think it like speaks of deformity, and I think it's scary. So I think this was a way that everybody could kind of confront it with levity. One of our friends said, you know, you may be losing your foot, but at least everything you do from here on out will be con cosidered brave. I mean, I just I really appreciate the ir reverence. But wow to me that it's such a revealing anecdote, and I think says so much about who you are in the way that you're processing it. I think very few people could find humor in tragedy so quickly after a diagnosis like this. Is that just who you are, is that how you sometimes process grief for trauma, Humor is sort of one of the most important things to me and so this is a weird, crazy situation, but there's also a lot to laugh about. So your cancer treatment has recently required that you moved to Texas MD Anderson. You are now in a ward that exclusively involves cancer, right, So, like every patient you're seeing every day has cancer. Do you feel a sense of camaraderie because you're all going through a similar experience. Yeah, it's a little bit like a factory. I mean, so many patients go through it. It's like cancer Disneyland. But there's something just nice about seeing other people. You know, not having hair is the norm there. So yeah, it's nice to be in that environment where everybody has cancer, and it's it's so interesting. Like I remember the other day, my wife was driving me to an appointment and somebody cut her off in the parking lot and she sort of honked, and I reminded her, like, honey, everybody here has cancer. Everybody's having a shitty day because they're coming to MD Anderson to either talk to a doctor about their own cancer or a company a loved one to do that. So like, we're all going through something bad and it kind of puts things into perspective that it gives you a certain amount of empathy. It's easy to have road rage to a stranger, but here you you kind of it's like every stranger there's like you know something very private about them, Like having a cancer diagnosis or a family member with cancer is sort of a private pain. And here you are in this large institution swarming with people, and you know something very intimate about each one of them, And it means you're kind of nicer to everybody on the elevator. You like hold the door for people that you you might not otherwise think about, and so it does engender a certain amount of positivity in light of what's usually a crappy day for people. I wonder how involved you were in your treatment plan, because on the one hand, you're an extremely knowledgeable, scientifically minded patient who can do his own research. On the other hand, maybe there's a simplicity and deciding to defer decision making to some other person to put it all on them. Yeah, that's a super interesting question. There's something soothing about just being taken care of. But I also just find this stuff really interesting, Like it was very weird to be talking about biopsy results and surgical decisions. It felt kind of abstract to me, just because I could get into the weeds about the trade offs and oh how do you do that? And how is that even possible? And it didn't necessarily always feel like I was talking about my own treatment plan. So I definitely I found some perverse excitement about engaging with these well trained and very smart people on their dick matter. Did you do your own research at every step along the way? Oh definitely, And so yeah, I got I got really in the weeds reading the medical literature and trying to make the best decision, but also knowing that the best decision wasn't always the most pleasant decision, you know, So if chemotherapy would extend my life, it also really sucks. So that's the challenge of making a decision for yourself. Anyway, It does make you prone to regret because you didn't just you didn't necessarily follow the protocol and the decision is on your shoulders in a way. What has it been like to see your body change in this way? Yeah, it's been hard. Yeah, I feel like I am more concerned on any given day, I'm more concerned with losing my six pack than I am with the possibility that this disease might kill me. Maybe it's just because it's more present, and that's just a flaw in my and vanity, and it's it's not something I'm particularly proud of. Just yeah, maybe just a quirk of my brain where it's certainly more present than mortality. I don't think it's just your brain, Scott. I find so much resonance in that, and I think it is very brave of you to admit that, because I think, you know, there's this narrative out there like, oh, you know, I should just be grateful that I'm alive, Like why am I caring about all these small things? But you know, a huge part of who we are is is how we feel, and sometimes, you know, as much as we might hate to it is what we look like. Yeah, I miss my beard. Then again, I think I'm gradually warming to this idea. And I don't want to act like I'm reformed, but it does. As I'm sort of gradually losing function, as I've deconditioned and become less agile and more frail, I'm warming to this idea that identity is a little more plastic. Even though I can't do a handstand right now, I'm still me these things that I thought were core to my personality and to my existence, like my athletic prowess, whatever it was. As I'm losing those things at it suggests that a lot of these things are more more negotiable than I thought. We'll be right back with a slight change of plans. What has it been like to confront death in this way? How I confronted death? Or have you confronted it? I mean maybe you haven't, which is also completely fine, you know, Oh god, it's so weird that the death is feels very theoretical because the experience of the disease was really just my ankle hurts and jogging is just is uncomfortable. And then it's been the treatment that vastly overtakes the disease in terms of unpleasantness and discomfort. But in order to undergo this hideous array of treatment, I have to operate in the assumption that I'm going to come out on the other side and live a long life, because otherwise what's the point. So day to day I function as though I will be a long term survivor of this disease. It will be a formative, character defining experience. But I don't think that I'm going to die now. And it's hard to like share those two things because of course, when I have been diagnosed with something that tends to kill people, you do need to appreciate maybe maybe you should change your behavior in some way or change the lens with which you look at the world. But you also should if you're to survive. I've probably act as if you're going to survive, you know, fake it until you make it. I can fully appreciate a rational commitment to that, but when I think about myself, I would crack and break. I mean, my emotions would get ahead of me for sure. And you think so, But do you have those moments of weakness and vulnerability where you're like, look, my rational brain is telling me to act this way, but like God, this just really sucks and I feel really despondent or I'm just so enraged by this situation. Yes, but I was on mushrooms, so that doesn't really count. I think, oh, wait, this is so interesting. Do you do a trip with the hopes that it would change your perspective when it came to cancer, Because I know there's all these studies happening right now. It was clear that I had some processing to do, and it felt like this could be a useful aid confronting mortality and fairly scary statistics about my long term revival. I don't know, I guess just to let that all sink in to marinate in my skull, needed, potentially needed some enhancement, some external enhancement. The experience that made me cry was imagining the situation from the point of view of my mom and sort of the pain of having a child diagnosed with a life threatening condition and be at risk of dying. I'm an only child, I'm close with my mom, and for some reason, that perspective shift that was is always possible, but is somehow made more tangible when you're on substances like that drove me to tears. I'm curious to know how you know you're going through this huge personal and physical change, And one thing that's hard to anticipate is how the people in your life are going to change as a result of the diagnosis, change the way they interact with you. Have you noticed any changes. I think a lot of people would think that since I have quote real problems, their problems seem insignificant. I think what I've learned through this experience is that there's such a degree of homeostasis in the human mind that your problems are your problems. That means that when something is bothering you, whether it's a life threatening thing or a very minor thing, it still kind of occupies the full bandwidth. So it doesn't annoy you when you hear people talking about more everyday problems. No. No, my best friends biggest toughest decision he's working with right now is which blue apron item to cook tonight? And I'm thinking about should I do that to do the surgery after cycle four or after cycle five? And how will that affect my my survival and recovery and everything like that. So I could see why there would be some hesitation in connecting, But I think I mean a lot of those Maybe if there was an advice for your listeners in that category of things. Um, it's less about what you say and more just the fact that you're saying anything at all. You see this caring. Yeah, have you noticed that any of your friendships feel different now though, or that you're, you know, for someone who is normally just so self sufficient and independent, all of a sudden you're on the receiving end of all of a sudden you're on the receiving end of pity, and that might be a foreign feeling. I mean, do you do you feel that way does make you uncomfortable? I just assume that they envy me for so many other reasons that it just balances things out. I love that. What about in your relationship, what's been the hardest part about being newly married and having to go through this with your new wife? Yeah, I mean I think in our relationship, I think I had been sort of the more. I had been, more of a provider, more of a caretaker, more of a rock, and then here I was sort of crumbling, and I think it caused a little bit of a reconfiguration of our roles, hopefully temporarily. When you sign up to build a life with somebody and then you learn that they may not live to fulfill that dream, it must be really hard. And I think that has been. I mean, that has been in some ways what has motivated me to treat this very aggressively, even if it will cause long term damage to my heart or neuropathy, that is preferable to perishing. So I think seeing it through her eyes has been hard but also motivational. Has there been anything that surprised you about the way that you've adapted to this cancer diagnosis and treatment. Yeah. When you get to the other side of these events, events like a diagnosis like this, it feels like the emotional thermostat has prevailed and I am generally just as happy as I was a year ago. There are moments of more acute discomfort, uh, nausea and pain and helplessness, etc. But like the good moments are just as good. And on a Sunday morning, you're drinking a cup of coffee, you're looking out the window. It's like that moment is just as nice as it as it was a year ago, and that although my experience may be punctuated by a lot of negative experiences, that plenty of very nice moments remain. I think that people like yourself included, would predict that you would just be a total wreck and it would be absolutely constant misery. But I guess I don't know. I mean, maybe it's it's it's resilience that is unique, but I doubt it. And this was unexpected, right, I mean, you didn't predict this. Yeah, it's interesting because I mean it's certainly a pain in the ass, But if you knew how generally normal I would feel, it's like, would you would you work so hard to avoid this outcome? I mean, that's sort of a weird and weird argument, but oh interesting, No, I want to so. So what you're saying is like, if I'd known that I would adapt in this way and achieve my former happiness levels, was there justification for me to be so fearful of cancer in the first place. Is that kind of what you're getting at? Yeah, right, I think that is. I think that's that's well said that I think you put it together better than I could. So I don't think it's like one ought to just forsake helpful habits in order because they realize that doesn't doesn't particularly matter, but but I think it might serve you to worry a little bit less. How has this experience changed your relationship with control? As you said earlier in the interview, you're kind of self proclaimed control freak, and yeah, I do wonder if you think differently about that and how that might affect the way you live the rest of your life. It really makes you understand that you are not in control and it's a little refreshing in a way, like you can sort of release the grip on the steering wheel a little bit, and that kind of eases tension throughout your entire body. When you realize that you can do your best, you can control like ninety nine percent of outcomes, but there are certain things that just come at you that you had no chance against. Well, I love that. It's really beautiful, Scott. I think there are many listeners who are currently in the throes of a big life change and it is unresolved, and I'm wondering if you have any advice for people who don't, who don't know the end yet right they don't, they don't have that clarity. How you deal with that kind of uncertainty Mushrooms. I mean, this is I am far from a zen master, and my meditation practice has long since lapsed, but there is a certain comfort in appreciating what's happening right now, and usually whatever crisis is looming isn't affecting what's happening right now, and that if you just notice it and appreciate it, it can provide a lot of comfort. And you realize that if right now is fine, and then the same thing happens tomorrow, and tomorrow is fine, then it's probably going to continue along that path. Yeah. I think that's really helpful. I also like how you just framed it as fine. You know, yeah, you know, yeah, but it's fine, it's fine exactly. I think listeners are going to be really lucky to be able to hear the full range of your thoughts. That's very kind of you to say, yeah, no, I really mean it. So thank you so much. Hey, thanks for listening. If you're enjoying a slight change of plans, please make sure to subscribe, rate and share the show with friends. Join me next week. When I talked with Morgan Gibbons, a transgender man in his twenties, he underwent hormone therapy to bring his body into alignment with his male gender identity, I found myself skipping at home. You know, I'm six one and I am a pretty gigantic black person. But I had so much joy in that moment that I literally could not contain it. But Morgan's joy was short lived when he was confronted with the reality of being a black man in society. You know, there was this aspect of feeling completely boxed in and caged by womanhood and my femininity, and I broke free of that, you know, I broke free of it for a little while. I had a few moments in the sun, you know. But the longer I've gone since that moment, the more I've realized how I have become caged once again. I'm not as free as I thought I would. A Slight Change of Plans is created an executive produce by me Maya Schunker. Big thanks to everyone at Pushkin Industries, including our producer Mola Board, associate producers David Jaw and Julia Goodman, executive producers Mia Lavelle and Justine Lange, senior editor Jen Guera, and sound design and mixed engineers Ben Taliday and Jason Gambrel. Thanks also to Louis Gara who wrote our theme song, and Ginger Smith who helped arrange the vocals, incidental music from Epidemic Sound, and of course a very special thanks to Jimmy Lee. You can follow A Slight Change of Plans on Instagram at doctor Maya Schunker. I finally have I finally have someone to write the perfect college essay about just about fifteen years. Yeah, came a little late. Certainly you already got into Harvard. Scott all right, we want to get into Harvard. Plus, come on,

A Slight Change of Plans

You can follow the show at @DrMayaShankar on Instagram. Apple Podcasts’ Best Show of the Year 2021. 
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