Life After Surviving Stage-Four Cancer

through his treatment. I'm thrilled to share that today Scott's scans show no evidence of cancer and he's back at home in California, adapting to life after treatment. When you're given the command by a very serious and well trained doctor that here's what you must do, it's obvious that you heed that call. But now now nobody's really telling you how you should be spending your time, how to relish and enjoy what you did fight for, and that

is like that is a more challenging puzzle. On today's episode, living on the other side of a life changing diagnosis, I'm Maya Shunker and this is a Slight Change of Plans, a show about who we are and who we become in the face of a big change. Before we dive into my recent conversation with Scott, here's a bit of background on him. Scott's self proclaimed health nut who has

been relentlessly trying to optimize for his future health. We're talking veganism, adding turmeric to his food, intermittent fasting, and sleeping a specific number of hours every night. And so when Scott's ankle started bothering him in the fall of twenty nineteen, and he soon learned that he had stage four bone cancer, he was shocked. After all, he'd spent the majority of his adult life trying to avoid this outcome. When Scott and I first spoke, he reflected on how

his self identity was changing. In the midst of treatment. He had had his right leg amputated below the knee, a vertebra removed from his spine, and twelve rounds of chemotherapy. For this conversation, I asked Scott if he'd be willing to pick up where we left off. The final part of his treatment would involve six more rounds of chemo and one additional surgery where doctors would need to operate on his other leg. Of that surgery, Scott was given

a choice. Option one, a surgery that would require Scott to stay off his leg for twelve months while it healed, but that could ultimately restore his leg to normal function, or option two, a surgery where he could bear weight on his leg right away, but that would limit his use of that leg in the future. I wanted to know how Scott decided between these two surgeries. Given my youth in general inclination toward activity, most surgeons were thinking

that the former was the better procedure. But as a part of this ensemble of things that were happening to me, I think I had to think pretty hard about whether I wanted to dig in for another twelve months or more or just move on with my life a little bit, accepting that I would have limitations for the rest of my life. And so I talked to a lot of people about it, and I think my wife and I were in agreement that I don't always have to do the hardest thing and opt for the slog that I

could say, you know what, I need a break. I want this to be over sooner rather than later. And even if this doesn't allow me to be a paralympian, I'm going to be able to get around. And it felt like when you're talking about this disease, it's quite possible that things come back in twelve months, and if and if I wanted to enjoy the next twelve months, and it does feel kind of dark, but if if you want to think about well, time is short. Time may be short. It's short for all of us, but

it may be particularly short for me. Do I want to spend the next twelve months of my life on crutches, crushing on it? Sthetic when there might not be that much more than that. Yeah, I mean your decision to go with the surgery that was easier in the shorter term, potentially more complicated and longer term, it strikes me as as such a foreign decision for Scott, like, given everything I know about you, you are you are through and through, like a suffer now live later kind of guy. You know,

it does strike me. I mean, sometimes isolated decisions that we make in life can represent more global shifts in perspective. And I do wonder if this felt new to you in some way or represents something slightly bigger. Yeah, No,

it's a good observation. I think I'm definitely a delayment of gratification kind of guy, like I am an embodiment of the marshmallow test in that I haven't even when the researchers came back and gave you the two marshmallows to enjoy, you were like, Nope, I don't even want those. That's right, That's right. I think it did signal a little bit of self compassion, just a sense an acknowledgment of Wow, this has been a really hard year. I'd like to get off the ride now. I guess tempted

by an easier option. I feel skeptical of it because it's a shortcut. It must be a half measure. But in this case, I just felt, you know, maybe I deserve the shortcut. You know, I'm mindful of the fact that you were going through this entire experience against the backdrop of a global pandemic, and I'm curious to know what it was like to navigate your treatment with this

added layer of complexity. Yeah, I mean, there was something that was actually kind of fortuitous about it, because as I was kind of receding from my normal life, everybody else was sort of doing the same um and I was I didn't have to feel so self conscious because people weren't out in the world really, like nobody could see what was below the sort of the carnage below screen,

which was kind of great. And so February March of twenty twenty one, vaccine started circulating, and I think there was a sense that the world was going to open up and people were going to get back to real life and start congregating. And I, while this was exciting to get my own inoculation, I also felt a little anxiety that, oh, you know, the gig is up, Like now I'm gonna be expected to you know, present myself and out of the closet as you know, somebody who

is now disabled in a way. And I think I certainly had mixed emotions about it. In some ways, the pandemic and everybody's reclusiveness was suiting my lifestyle, and I wasn't. I wasn't quite finished, and I felt like I was going to get left behind when everybody just suddenly marches into the streets and I'm sort of I wasn't quite ready for that. Yeah. On the last day of your treatment, you participated in a ritual that MD Anderson has for patients where you read an inscription on the wall, you

ring a bell. It's this incredibly joyous experience and you're surrounded by your caretakers. What what was that experience? Like? Yeah, I mean it was. It was It felt triumph it in a way, I got to celebrate a little bit in the you know, such as it is in the cancer ward. It was a real pleasure to know that I wouldn't have to come through those doors again, at least at least for a while and subject myself to

that form of torture. You know. It's it's so weird that you're intensely grateful for the care and kindness, and yet at the same time you never want to see those people again because what they represent and what they leave you with. So yeah, it's funny to, you know, to say say goodbye to these people that I've been seeing almost daily for months and say like, you know, see you never and feel good about that and then

correct me if I'm wrong. But is it a few days after the bell ringing that you get the final body scan? Yeah. So in the first scan after treatment, everything looked good. I was clear of any overt signs of disease or tumor, with the one exception being a small little nodule that they saw in the lung, which they couldn't say much about except that there was something, and all we could do was kind of acknowledge it and wait because it was too small to really interpret

visually and not advisable to interrogate it any further. It was just well, well, we'll wait and see. And I mean, I was assured that was likely nothing. But that's kind of what I heard a year before, you know, when my ankle hurt and it's probably just a sprain or probably just tendinosis or something. So obviously I'm concerned, but had to just sit with that feeling of concern and

understand that there's nothing to do. The the evidence that it's anything will only emerge in time if it does, and that is the hallmark of cancer is that it grows, and so we have to wait to see if it grows. And I think that's a hard thing to do, to just sort of shut it out of your mind, but I guess maybe, Yeah, I guess at that point I had a lot of practice disengaging from all the what

if thinking, because you could really just spiral. Yeah, I mean, I think it's such an important characteristic of illness and disease that we often have to redefine what it means to actually cross the finish line, both physically and psychologically, right, I mean, essentially, Yeah, it's about learning to live with this permanent feeling of unease, to come to terms with that.

And I hear you saying, you know, you had a lot of practice, but I know listeners who are going through similar situations want to know, like, Scott, what is your secret? How do you manage how do you manage the waiting game? Right? Like, how do you manage the anxiety that accompanies this kind of uncertainty? That's so interesting turning it over in your mind, Like unlike a rock tumbler,

it's not necessarily going to smooth out the gemstone. It's just gonna, you know, make it spikier and scarier because you simulate all the outcomes that are frankly terrifying, whereas actually kind of just turning away from it with standard you know, with a sane plan. It's not as though I'm going to ignore it, but we know that the only thing to do is wait and see and kind

of follow up when the time comes. I mean, I think this whole ordeal Obviously, when trying to kind of muscle through a treatment plan like this, which feels interminable, your whole psyche is organized around getting through it, getting to the other side. There's a finish line, and that's

what ringing the bell felt like. And now on the other side of that, you're kind of dumped into this ocean of of after time that that feels like it's well, A, it's of uncertain length, but b there's no there is no finish line now, and it's a little bit like you know, graduating from school or getting your degree, and then you enter adult life and there's no there's no definitive hurdles or milestones. You kind of just have to

make those up for yourself. And likewise, you know, I'm fighting for survival, fighting to complete this treatment to give me a chance at at living a full life. And now that I'm in that, the question is, Okay, well, wait, what is a full life? Like it was clear that a full life is something you want, and so I'm very willing to fight for that, but now I have to sort of realize that life and you know, what,

what does make for a meaningful, full, happy life. If you no longer have this very concrete goal to save your life, that is a more challenging puzzle. It's easier when you have marching orders. And I think that's why there's a psychological kind of purity to war or something where where it's just so clear what you have to do, whereas it's this kind of malaise of privilege, like a privilege of time and a concern that you might be squandering it. We'll be right back with a slight change

of plans. You through everything you had physically and emotionally into fighting for your life life, and now you're living that life, and it's up to you now to find clarity around what you want that life to look like. And it feels like an overwhelming and pressure filled process that maybe a person ought not to face in their lives because all of a sudden, the stakes feel so high, and maybe that's unnatural. Like I almost don't in this moment.

I'm struggling to know whether it's like a good thing for you to feel like you have to fully reorganize your life and your priorities and all that comes along with it. It's nice to feel enlightened. But I guess there's something lovely about also reclaiming a sense of normalcy and not feeling like there has to be or found shifts, you know, not feeling like you can't sweat the small stuff anymore and you can't begrudge the customer service agent who's giving you a hard time, because oh my god,

that stuff doesn't matter, and so does it. Does it feel like a burden actually to have to to re enter life with like a new purpose and a new philosophical mindset. Yeah, that's a great question. I think certainly, certainly, I do crave a degree of normalcy, and it's like it feels like a triumph and a delight to go to bed and realize I didn't take a single medication today, Like I didn't have to swallow a single pill today, or there was no point during the day in which

I needed to lie down. I just sort of conducted a normal adult life, and I think that feels great. But I also do notice like there's a tinge of sadness at just resuming as if nothing happened, or like noticing that I'm falling into patterns that I thought this experience had helped me outgrow. One of the things that I think I've gained from this experience is a little bit more flexibility in terms of my environment, what I eat. I just feel like less fussy about my physical circumstances,

whether it's comfort or food or whatever. Not to say I don't still seek those things out, But so when I find myself being picky or fastidious about something, I notice like I can, I can chastise myself thinking, you know, have you learned? Nothing? Like, what do you you know? This is such a pre cancer pre illness thought. Yeah, it's interesting. I mean I think what I'm what I'm hearing, what I'm reflecting on in this moment, is that there

is a tension, right. I think it's very tempting for us to come out the other side from a very challenging, difficult episode and feel, Okay, I am, I am enlightened, I have a new perspective. Let this all not be for not you know, please let me have learned things.

But then there's this pull from the other side, which is there's some value in feeling some of the more familiar everyday feelings that I once felt, because it is signaling to my brain that the old constellation of things that I used to care about, that I used to get riled up about, whatever it is, still exists, and it's just like not knowing what the right balance is.

I guess I don't know if you felt that way, like you chastise yourself and yet at the same time something very familiar and comforting potentially about worrying about what you eat. Hmm, yeah, Like, how awesome is it that I have the luxury of worrying about what I'm eating right now? That's awesome that my brain has even the bandwidth to think about that, you know. Yet all said, I mean, it feels like getting my old self back in a way. Um, But then I think, oh, well, mate,

it was my old self that great. My old self was the person who got cancer. So what were my decisions all wrong? Or was it, you know, some karmic retribution for for something. So it's like there's some aversion I have to my old self because my old self was some was something that got me in the place of getting bone cancer, which I know feels like somewhat perverted. When I was a senior in high school and got into Harvard, it was like validated everything I had done

up to that point is absurd. But that's that's a mindset. And by the same token, getting diagnosed with cancer calls into question anything that's happened before. Was I doing something wrong, whether it's physically, nutritionally, spiritually, whatever, And so I do feel like at some distance from my old self because that old self kind of faced judgment. This, This all feels like weirdly spiritual and religious. And I don't I

don't mean it. I'm implying no theology here. I'm just it's just I'm just noticing that my brain likes narratives. But if you think that, well, do the ends justify the means in some way? Or if I'm now more mature or have my personality has been smoothed out by this whole experience. This is just what I needed, was a good ass kicking in some way. Um, and I

certainly got that. I'm listening, and I guess I'm just I'm lightly stunned by the agency you feel old Scott played in quote getting cancer, Like, why is old Scott carrying any moral responsibility for a physical outcome that old Scott didn't? I mean, how could that? How does that possibly work out logically? I don't do that even I don't think. I don't think it's rational, but it's feels

feel it right. It feels like the other side of the coin of agency, to use your word, which is that if if I feel like I can move the needle positively, then it seems like maybe I somehow move the needle net right if if it's within your power to but some things aren't within your power, you might not might biologically just have had like no defense against this cancer. There's no counterfactual world in which you defeat

the cancer through any sort of intervention. You accept that as being at least one reality, right, Oh, I rationally, I completely accept that, even hearing you say it. It's therapeutic. And the reason I'm so interested in this, Scott is because that self blame is our way I think of subconsciously exerting control. It's like we need to feel like our past selves had control and our current day selves had control. And it is an interesting quirk of human

nature to play this game with ourselves, you know. And I do wonder whether when you come out the other side of treatment successfully, it can seduce you back into that older mindset of thinking we are in fact in control of our outcomes because you saw some version of an input output model play out in your favor. Right, yeah,

I love everything you just said. I think it definitely is part of this illusion of control, which is somehow comforting and definitely in the throes of treatment, I am being kind of passed around from clinic to clinic, doctor to doctor, and I don't feel like I have much agency, and so and that was that's a little freeing. I guess now as I regain my own agency and contemplate how I want to direct that agency, I do feel

more more prone to that narrative of control. But right, so, either it feels like you should own the good and the bad, and if you're entitling yourself to own the good, then you should take responsibility for the bad. However, the truth is probably more that you shouldn't take much ownership

of anything, the bad or the good. But it feels better. Yeah, yeah, Okay, So I want to dig in a little bit on on this topic of identity because one of the most memorable parts of our first conversation is when we talked about your changing relationship with your identity. You said that the things that you felt had to find you like your physical fitness were perhaps more quote negotiable than you thought, and that you said something so evocative like, you know,

even though I can't do handstand, I'm still me. And I want to know what's your current understanding of what makes you you? What are those defining traits? Yeah, yeah, what makes me me? Every report that I can do a nice hand stand again is at the opposite of the point. Um that's awesome, though, yeah, um yeah, maybe I've become a little less me, which might be for

the better. With this weird experience where we went up to the Russian River a group of friends, and we stayed in a house and it was supposed to be this sort of quiet get away, and it turned out that in the open meadow across the street that weekend was scheduled a rodeo. The rodeo was in town, and like the front yard was essentially a parking lot for this rodeo, and I think there were there were sort

of two camps in responding to this. Half of the folks were annoyed that it was disrupting the intended vibe. And I think two years ago I certainly would have been in that camp, just outraged and indignant and feeling sort of this urban smugness at the rodeo. But for some reason, I found myself I was viewing it like a as if I was a sociologist, like I was

curious about, I guess, the treatment of animals. Notwithstanding, I was interested in the cultural novelty of it and kind of wanted to explore it and understand it more rather than just feeling a need to flee. And I do think that was a that's a shift in my personality that I'm grateful for. I think your life is just easy when you're less pissed off by stuff. It's interesting.

I mean, you said you're you're less pissed off right in the face of things you would have coded as disturbances before, right, But it seems like there's more there. It's not simply being less pissed off. It seems like

there's some exploratory side of your personality that's well. Your show is called a slight change of plans, you know, sometimes you get curveballs, and I was just sort of curious about what was in store, and it's like, yeah, who's to say that my plans would have gone out without a hitch anyway, Right, I've had this experience in the past where things got off track despite my best intentions, and so maybe it matters less that things are executing

according to plan. Does that make sense? Yeah, it's so fascinating what you've just said, because you can easily imagine. I mean, I think that the common narrative would be, after are a wildly unexpected stage four cancer diagnosis, we cower in the face of slight changes of plan. Right, we were fearful of unexpected, unexplored terrain because you know what,

last time we went there, we didn't like it. But what you're saying makes me think from a totally different perspective, which is you're coming at this from having so carefully crafted your plans and and like you said, despite your best efforts, things went off the rails, and so maybe we should be embracing some of the curveballs more generally. Yeah, And guess what, I think that it saved me a few hours of consternation, because like so, I was better

off in my subjective experience, and it's like, it's pretty nice. Yeah. I remember, Scott, when we talk to you, you had said that, and this is while you were in the middle of treatment, you are resisting any big changes to the way that you lived your life. And I pulled a clip from that from that conversation, so let's take a listen. 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, 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. Maybe maybe you should change your behavior in some way, or change your the lens with which you look at the world, but you also should if you're to survive, probably act as if you're going to survive. You know,

fake it until you make it. So. Now that you're no longer undergoing treatment and you don't need to carry this mindset in order to power through, I'm wondering if you have made any changes to the way you live your life. Hmm let me sounds so young. Um, yeah, it's interesting. I think at this point, I think I've internalized the sense that life might be for me more compressed than it than I thought it would be, and that it does create a little bit of pressure to

use time wisely. And I think, if I'm being honest, sometimes I find myself a little more like impatient. I do feel encumbered with the responsibility to like use time fruitfully, and by fruitful I mean in a way that is satisfying and enjoyable and kind and has value to me and others. When you have decades ahead of you, as most people assume, you could sort of kick the can down the road and say, well, there'll be time for

that later, or I'll figure it out in time. And now I'm thinking, well I should figure this out now. I definitely think it changes the calculus, this whole having a life threatening diagnosis definitely changes the calculus of whether you're investing in the the very long term. It's like you you could say, well, you know, when I'm older, when I you know, when I feel economically secure, then I'll then I'll invest in having a gratifying life. But now now it feels like if there's ever a time

to do it, it's now. In our last conversation you mentioned you mentioned something that surprised you, which was that the emotional thermostat had prevailed. You were you were pleasantly surprised to find that despite your worst fear happening, the good moments felt just as good. You know, you had more lows um and I think you said, certainly it's a pain in the ass, don't get me wrong, but you would achieve some kind of happiness equilibrium. And I'm

just curious to know if this is still the case. Yeah, it feels like there's there's enough in life two either rue or have regret for, or take joy in and find gratitude for that you can. There's just enough going on that you can kind of pick and choose what to highlight or not. And it's really less about the sum total of all the good stuff and the bad stuff is more about just what you shine your mental

spotlight on. And so in the course of all this, obviously it was debilitating and not fun, but they were also you know, a lot of unexpected silver linings. And yeah, it's funny that one's mind can drift towards gratitude in the face of tragedy. And I've been pleasantly surprised that, Like, it's pretty easy for me to focus on the nice things. It takes it takes reinforcement, but it's definitely there. Hey,

thanks for listening. Join me next week when I talk to author Michael Pollen about the power psychedelics have to change our minds and what he's learned from his own psychedelic trips. One of the things psychedelics does is it takes all that ironic crust we cover the world with and it scrapes it off really effectively, and suddenly things appear with the profundity and beauty of first sight. I mean, awe at the ordinary is a really you know, a piece of music, a flower, I mean, and that's a

wonderful aspect of psychedelic experience. A Slight Change of Plans is created, written an executive produced by me Maya Schunker. The Slight Change family includes Tyler Greene our senior producer, Jan Guera our senior editor, Then Talliday, our sound engineer, Emily Rosteck our producer, and Neia LaBelle our executive producer. Louis Skara wrote our theme song and Ginger Smith helped

arrange the vocals. A Slight Change of Plans is a production of Pushkin Industries, So big thanks to everyone there, including Malcolm Gladwell, Jacob Weisberg, Lee, tamlat and Heather Fain and of course a very special thanks to Jimmy Lee. You can follow a slight change of plans on Instagram at doctor Maya Schunker See you next week. I'd love to hear about your return flight home, like do you remember the kinds of thoughts that were going through your head?

Or like what it what it felt like to be leaving um Well. I was thrilled to be making the journey and generally find air travel hellish, but at that point I was thinking, what can United do to me that M B Anderson hasn't already done