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The one-year anniversary of my total glossectomy

jakeseliger.com

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Re: The one-year anniversary of my total glossectomy

#11

Post by jseliger »

uxcolumbo wrote: post #5

I don’t really know what to say, it’s hard for me to fathom what you had to go through. The bit you wrote about having to spit in a cup for the rest of your life, really brought it close to me how much we take for granted. I admire your strength. I wish the best for you and your wife.

Thank you! I wish I felt strong; I had a friend from high school visiting this weekend, and he said that my strength is inspirational. I looked around wondering if he was talking to someone else, but in fact I was the only person in the room.

Re: The one-year anniversary of my total glossectomy

#12

Post by jseliger »

ChrisMarshallNY wrote: post #2

That sucks, but his attitude is great, and that’s really important. I sincerely wish him well, and appreciate the note. I had a coworker that had the same thing. Watching him deal with it was difficult.

I had a coworker that had the same thing

Oh man, I hope he or she was okay. This is terrible. In most people in whom squamous cell carcinoma of the tongue gets caught early, it's curable. I'm in the group in whom it's caught relatively early, but the initial surgery and radiotherapy isn't enough.

Regarding attitude, I figure that there is much I can't control, but attitude is one I can. WWMAD? (Would would Marcus Aurelius Do?): https://jakeseliger.com/2023/09/18/stoic-philosophy-finding-...:

You’ll see stoic ideas threaded through the essays my wife and I have been writing about my fatal cancer diagnosis: “Every day I’m trying to make a good and generative day, and I remind myself that there are many things I can’t control, but, as both Frankl and the Stoics emphasize, I can control my attitude.”

One way to see the virtues of this attitude is by process of elimination: What’s the alternative? Wallowing in bad days in which I accomplish and achieve nothing important? Getting angry about things I can’t control, and things that will remain the same whether I’m angry about them or not? Lamenting that which cannot be, and will not be no matter how much I wish it so? Nothing will bring my tongue back. Bemoaning my fate will not avert it (though I’m also not passively accepting fate: as described below, I appear to be in a clinical trial for a novel, promising drug that targets squamous cell carcinoma of the tongue). The likelihood of another decade of life is not literally 0.0, but it’s under one percent and would require a series of near-miracles via clinical trials.

Re: The one-year anniversary of my total glossectomy

#13

Post by Dylan16807 »

nyokodo wrote: post #9
tylergetsay wrote: post #4

Anyone who goes through something like this is an inspiration to those they interact with. I wish the absolute best for you.

> an inspiration to those they interact with Indeed, those who confront suffering with courage encourage the rest of us.

What does it look like for someone to confront a situation like this without courage?

To be clear, I'm not really talking about this story in particular, but the way people discuss other people in really bad situations. It seems like almost any reaction that isn't "lie there motionless" gets called "courageous".

I guess it feels more like a pep talk than an evaluation.

Re: The one-year anniversary of my total glossectomy

#14

Post by polishdude20 »

lr4444lr wrote: post #8

That's it, I'm going talk to my doctor about getting the Galleri test. I was already on the fence, but this is the straw that breaks the camel's back for me. (It isn't advertised as targeting his specific cancer, but goddamnit, I need some peace of mind.)

Is it available?

Re: The one-year anniversary of my total glossectomy

#15

Post by delichon »

jseliger wrote: post #10
voisin wrote: post #3

@jseliger, I’ve been following your journey via your comments here on HN and the occasional post. I am glad you are posting and I think for those of us who haven’t been close to someone with a serious diagnosis and treatment like yours, it has humanized Cancer in a really helpful way. Thank you for posting and giving this insight and wishing you all the best as you continue along this path.

You're welcome! I've been "reading the Internet" since the late '90s with sites like /., and, when I got diagnosed with the death sentence sentence—recurrent and metastatic head and neck cancer—I began looking into clinical trials, and I realized that I'd never read any good descriptions of what clinical trials are like from the patient's perspective. So my wife and I decided that the thing that we needed to exist in…

I went through terminal cancer with both parents. It's infuriating that with that diagnosis the medical cabinet is open with respect to palliative care, in quantities that make an exit simple. But at the same time they feel the need to protect you from possible treatments. Potential accelerated death? Approved. Potential prolonged life? We'll need more evidence.

Re: The one-year anniversary of my total glossectomy

#16

Post by jseliger »

Dylan16807 wrote: post #13
nyokodo wrote: post #9

Earlier quoted context omitted.

> an inspiration to those they interact with Indeed, those who confront suffering with courage encourage the rest of us.

What does it look like for someone to confront a situation like this without courage? To be clear, I'm not really talking about this story in particular, but the way people discuss other people in really bad situations. It seems like almost any reaction that isn't "lie there motionless" gets called "courageous". I guess it feels more like a pep talk than an evaluation.

I'm not 100% sure, but I've heard from oncologists and other docs that people with bad diagnoses often lash out at doctors and family who are trying to help them.

Some people also go into denial about what's happening, and denial can be fatal. This is not quite 100% on point, but my wife wrote a story about meeting a patient whose large mass on the side of her neck had not been there for just a couple days: https://bessstillman.substack.com/p/just-because-you-wont-se...: "Per triage, my patient’s symptoms started yesterday and she’s worried that the swelling might be an infection or maybe a pulled muscle, but the moment I walk into the room I know that I’m going to ruin her life."

Some attempt to take the hedonic path that would not, I think, be very satisfying, and yet they pursue it (heedlessly spending down cash on trinkets, the non-prescribed drugs you might imagine, Vegas, etc.). This is distinct from someone who decides: "I've always wanted to visit Tokyo and now I'm finally going to do it."

I think it's good to try and lead and positive, generative life, even when what is left of that life is limited, and when what "positive, generative" means will vary widely by person.

Re: The one-year anniversary of my total glossectomy

#17

Post by nyokodo »

Dylan16807 wrote: post #13
nyokodo wrote: post #9

Earlier quoted context omitted.

> an inspiration to those they interact with Indeed, those who confront suffering with courage encourage the rest of us.

What does it look like for someone to confront a situation like this without courage? To be clear, I'm not really talking about this story in particular, but the way people discuss other people in really bad situations. It seems like almost any reaction that isn't "lie there motionless" gets called "courageous". I guess it feels more like a pep talk than an evaluation.

> What does it look like for someone to confront a situation like this without courage?

There’s a lot of dark places people can go and choose to stay when they experience tragedy. Drugs, alcohol abuse, suicide, wallowing in misery etc. Perhaps you’ve never experienced tragedy, or been tempted by these dark reactions but for many they are all too familiar and it takes enormous courage to combat them. Seeing examples of others who are suffering reacting positively is greatly encouraging.

Re: The one-year anniversary of my total glossectomy

#18

Post by squigz »

_yb2s wrote: post #6

What a simultaneously terrible and inspiring story- I wish Jake the best for whatever that is worth in such a terrible situation. If you guys didn't click it, I highly recommend his wife Bess's corresponding post to this one- "Forever is such a short, long time" it is one of the best essays I have ever read on love and relationships. There is an incredible amount of wisdom in what she wrote, that can only have come o…

The essay in question: https://bessstillman.substack.com/p/forever-is-short-long-ti...

Re: The one-year anniversary of my total glossectomy

#19

Post by ChrisMarshallNY »

jseliger wrote: post #12
ChrisMarshallNY wrote: post #2

That sucks, but his attitude is great, and that’s really important. I sincerely wish him well, and appreciate the note. I had a coworker that had the same thing. Watching him deal with it was difficult.

I had a coworker that had the same thing Oh man, I hope he or she was okay. This is terrible. In most people in whom squamous cell carcinoma of the tongue gets caught early, it's curable. I'm in the group in whom it's caught relatively early, but the initial surgery and radiotherapy isn't enough. Regarding attitude, I figure that there is much I can't control, but attitude is one I can. WWMAD? (Would would Marcus Aur…

It was a "he," and it was not OK. I think it was fairly advanced, by the time it was diagnosed. The guy was a health nut, and avoided doctors like the plague.

I won't go into details about what he went through. Not fun.

I sincerely wish you the best. I live on Long Island, and have been watching folks battling cancer, constantly, since 1990 (when I moved here).

Re: The one-year anniversary of my total glossectomy

#20

Post by yahoobing »

One thing I get from this is you need to be really on the ball when you are this sick. Make hard decisions, do tonnes of research and so on. It is probably important to have support people who can “Karen” for the need of a better word the medical and insurance system when it isn’t working. Probably could be a job in itself. Probably is. The follow on is it helps to be wealthy before you get sick.
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