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Duration:06:43
Uploaded:2024-03-15
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MLA Full: "The Worst Things About Not Having Cancer." YouTube, uploaded by vlogbrothers, 15 March 2024, www.youtube.com/watch?v=-mYYMcdb_Gs.
MLA Inline: (vlogbrothers, 2024)
APA Full: vlogbrothers. (2024, March 15). The Worst Things About Not Having Cancer [Video]. YouTube. https://youtube.com/watch?v=-mYYMcdb_Gs
APA Inline: (vlogbrothers, 2024)
Chicago Full: vlogbrothers, "The Worst Things About Not Having Cancer.", March 15, 2024, YouTube, 06:43,
https://youtube.com/watch?v=-mYYMcdb_Gs.
Feel weird about this one, of course. Like, obviously I am extremely happy...but also very nervous. It's so weird when you're like googling like "This could be cancer, but it probably isn't" and then IT IS. Now every slightly weird blood test or strange abdominal pain is a shadow of that. But the anxiety is only a part of it...and the other parts are much weirder.

John's News: https://twitter.com/sportswithjohn/status/1768361802440560772

Grace's Video: https://www.youtube.com/watch?v=DzkPkQZqwqo

Between Two Kingdoms: https://bookshop.org/p/books/between-two-kingdoms-a-memoir-of-a-life-interrupted-suleika-jaouad/11375409

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Good morning, John.

It's now been more than four months since I had my last scan and was declared to be in remission from Hodgkin's lymphoma. This is obviously much better than the alternative, but also, there are some things about it that I don't like. My friend Grace, who also has been going through cancer treatment, just uploaded a video about this. [Grace] Gotta make up for lost time. Let's get creative.

Let's get a schedule. Let's work out, peak physical. [overlapping indistinct voices] [Hank] And of course, every experience is going to be different with me being unrepresentative, both in terms of the amount of support that I have, which is a lot, and the amount of treatment that I've had, which is comparatively not that much. But there have been parts of the transition out of treatment that have been very surprising for me. And I think that this is a thing that is not discussed as much as it should be. And as treatments are getting more powerful, it's more relevant than ever. So what are the worst parts of not having cancer anymore? Because we know the best parts, which is that you don't have cancer anymore. I'm gonna start out with the one that I think is most counterintuitive.

Having cancer is very bad. But there is something actually quite nice about a bunch of hard working, well paid, high status people constantly fretting over you. Here in Missoula anyway, I was extremely well taken care of. Never for a moment did I feel left behind. I saw my doctor at least twice a month, and he was amazing. You're getting scans, you're getting chemo, you're getting radiation.

Even if there's not a ton of outward activity, like you're on the couch or in the bed most of the time, you are surrounded by people working very hard to save your life, which makes you feel valued. And then you finish your treatment, and you're in remission, and they're like, all right, well, nice to meet you. You're not regularly talking to anyone at the cancer center anymore. You're not doing extremely hard things to preserve your life. You've been sucked out of normality, and it felt like care, and then you get plopped back into normality, and that feels like being ignored. This is so weird. So that's a thing that I really didn't expect.

And weirdly, I also didn't expect this next one, because I felt like, you get cured or you're in remission, and you ring the bell, and then you're done, but you're not. You might have cancer again at any moment. The peak time for relapse on my cancer is in the next year or so. And if that happens, it means I'm a trickier case than most people. That relapse would probably show up just as swollen lymph nodes on my neck or armpit or groin, but it could also show up in a lot of different ways. So my doctor's advice to me is, like, keep feeling your armpits and your neck for lymph nodes.

But also call us if anything seems weird. But I don't know if you've ever had a body or not, but, like, bodies are weird. Things seem weird sometimes. Now, the great part is, every time I have called, they've been like, that doesn't seem like a cancer thing, but you are absolutely right to call. It is weird.

Which is definitely the message I need, because I'm constantly thinking, oh, I'm blowing this out of proportion, and then waffling to, oh my God, I definitely have cancer again. And that's very hard. So I want to be invited to be put back into this system and know that these people are still caring for me, even if I'm not seeing them twice a month. But I might not be done with this, and I do not like that.

I do not want to die. And I'm still looking over my shoulder at the thing that wants to get me, and I'm not sure if it's there. I have these anxiety spikes every couple of weeks where I become certain that the cancer is back and it is not any fun. And I have friends for whom it has come back. And so I know that's real, leading me into the next thing, which is that I made a bunch of cancer friends throughout this process.

That tends to happen. And some of them have relapsed, and some of them are terminal, and some of them have died. And I know this is ridiculous, because obviously, my health situation in the last year has been a lot worse than the average for most people my age.

But I do not know how to not feel this bitter, guilty relief that I am not in the situation that they are in. The longer you're in it, the more off ramps you see, and the more you wonder not just why you got sick, but why you got better. The only thing that helps me with this is just accepting the reality that fairness is a human idea and the universe doesn't care about it. Next thing, you don't get to go back mentally or physically.

You don't get to go back. Cancer is physically taxing. Chemo, radiation, surgeries, they all leave a mark. I don't get to have the body that I had before this.

Not that it was perfect, but it had fewer problems than this one. In general, I feel like people don't understand this. I didn't understand it when I was going in, or they don't know how to understand it. Especially for young people.

Peers have less experience with illness, so they don't know how to deal with it or how to talk about it. And they can kind of just assume that you're all better and everything should be back to normal. It is not unusual for a cancer treatment to cause lifelong disability.

And of course, it's not just your body. Like the you part of you has also had all of this important stuff happen to it, and then you're put back into the life of the person you were before, and you can't necessarily tell if you fit into it anymore. The difference between fighting hard to stay alive and just being alive is very big. It's weird. I don't really even know how to explain it, and I think that it's even kind of dangerous.

I think this is why a lot of people finish cancer treatment, and then they make big changes or do big things. They train for a marathon, or they write a book, or they get a bunch of tattoos, or they become a professional stand up comedian. And in general, I think that embarking on some kind of 100 day plan of self discovery after treatment is a super cool thing to do if you're able to. Even something very simple, like try to get passably good at chess, or learn to code, or start biking or make a little art every day. This is how I think of it.

And it's okay if you don't think of it this way, but I feel like when big things happen to a person, the whole person doesn't come through. It's a different you that comes out. So maybe that new you is interested in different stuff, and that can feel like not being interested in anything because you're not interested in the old stuff. But finding new stuff could be really joyous if you have the support and structures necessary to find it.

This is just some of the stuff that I've noticed or heard other people talk about. There's obviously a lot more to survivorship, as they call it, than just you can talk about in one short video. Again, I know that I am very lucky.

I feel guilty about being this lucky. And I know that every individual experience of illness is going to be super, super different. But I think that's just like a super important thing to talk about. Because just because something is unambiguously good news doesn't mean that it isn't also super weird and super hard. This is weird and it's hard.

And for an extra wonderful discussion of it, you should check out Between Two Kingdoms by Suleika Jaouad. It's really beautiful and well done. John, I'll see you on Tuesday.

Also, John, congrats on the work you're doing in DC and the big news going on. And also, we just announced your Crash Course guest lecture, which is a new thing that we're doing on Crash Course. I can't wait to see what you do next.