6 ms·
The one-year anniversary of my total glossectomy
- ChrisMarshallNY 2y agoThat 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.
- jseliger 2y agoI 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-a-meaningful-life-and-the-cancer-treatment-struggle/ 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.
- ChrisMarshallNY 2y agoIt 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).
- voisin 2y ago@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.
- jseliger 2y agoYou'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 the world didn't exist, and thus we made it. When my wife and I started writing in earnest about the clinical-trial process in particular ("Please be dying, but not too quickly" is the most comprehensive: https://bessstillman.substack.com/p/please-be-dying-but-not-too-quickly https://bessstillman.substack.com/p/please-be-dying-but-not-...), I kept expecting someone to leave a comment or send an email saying: "Hey buddy, this has already been done, check it out here: _______." But that comment or email never came. Probably someone else's comprehensive essay and guide exists somewhere, given how big the Internet is, but I've never seen it. Without having had this kind of experience, I think it's difficult to understand just how difficult and not-user-friendly the clinical-trial process is. If we can help move the needle on that, we might dramatically reduce the number of people who are in a position like mine. Personalized cancer vaccines are so close: https://jakeseliger.com/2024/04/12/moderna-mrna-4157-v90-news-for-head-and-neck-cancer-patients-like-me https://jakeseliger.com/2024/04/12/moderna-mrna-4157-v90-new..., and I don't understand why the FDA hasn't approved Moderna's mRNA-4157 yet, apart from bureaucratic inertia and indifference to human suffering. I hope no one who has read our work has to go through a version of what I've been through, or has friends or family who must, but, statistically, given that a couple hundred thousand people have seen it, someone will. And it is better to be equipped with some sense of what to do and how to do it, than to have to try to figure it from scratch. I've wound up emailing guidance to a lot of people about head and neck cancers, and clinical trials.
- tylergetsay 2y agoAnyone who goes through something like this is an inspiration to those they interact with. I wish the absolute best for you.
- nyokodo 2y ago> an inspiration to those they interact with Indeed, those who confront suffering with courage encourage the rest of us.
- Dylan16807 2y agoWhat 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.
- jseliger 2y agoI'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-see-it-doesnt 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.
- uxcolumbo 2y agoI 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.
- jseliger 2y agoThank 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.
- DougN7 2y agoSometimes it seems like there is no choice but to be strong. But in reality someone could choose to give up and give in and quit. Not making that choice is what we admire in people, and you in particular.
- kelnos 2y agoThis makes me think about the saying about how being brave doesn't mean not being scared, it means pushing through the fear and doing what has to be done anyway. I feel like it's similar to your strength. From your writing I gather you've had more than your share of bad days, emotionally, during this ordeal. But you're still here, still writing, still posting here, talking to random strangers on the internet. And you and your wife's drive to document all this so others can better navigate the clinical trial process in the future... yeah, absolutely, this is strength, and a lot of it, even if you don't feel strong. Anyhow, for what it's worth, know that there are random people on the internet who follow your story from afar, and that we're rooting for you.
- lofayo 2y agoRecently, i keep reading the book of 'Pratical Mindfulness', i have learnt it that you are you not your thought, thus, if you feel fear, it maybe just a emotion, just your feeling, not the facts
- _yb2s 2y agoWhat 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 out of living through incredible hardship. It literally made me cry, and I am going to quote her in my wedding vows I am writing.
- squigz 2y agoThe essay in question: https://bessstillman.substack.com/p/forever-is-short-long-time https://bessstillman.substack.com/p/forever-is-short-long-ti...
- boppo1 2y agoGood post.
- lr4444lr 2y agoThat'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.)
- polishdude20 2y agoIs it available?
- epmatsw 2y agoIt is! I got one for $750-ish about a month ago.
- rblatz 2y agoDo you have to be over 50 to take it?
- mdorazio 2y agoLooks like no, but you're more likely to have to go the online provider route which is $950. https://www.galleri.com/patient/the-galleri-test https://www.galleri.com/patient/the-galleri-test
- epmatsw 2y agoThey're running discounts lately, my dr's office had $200 off for anyone that wanted it and they have regular sales every couple of months it seems.
- yahoobing 2y agoOne 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.
- cactusfrog 2y agoThe Mayo Clinic sounds like a garbage healthcare provider.
- Ancapistani 2y ago> have support people who can “Karen” for the need of a better word the medical and insurance system Yep - that's called a "patient advocate". I learned about it when I was in my teens, and went with my grandfather to the VA hospital on a regular basis. Multiple times I had to remind the healthcare providers that he had long-standing kidney issues, that contrasting agents had caused immediate and significant reductions in kidney function in the past, and that as a result we should consider why such tests were ordered and what benefit the results would provide. I 100% believe they would have unintentionally killed him years early if I hadn't been there to question them and push back.
- osmano807 2y agoThanks for your experience, that's important to remind us (me) of the other side. Sometimes I feel really sad that the bus factor of some treatment is 1, and double sad when that one is me. No one should have delayed care just because I need my vacation, or my day off. Kudos to the surgeon who trusted his instincts and suggested a surgical biopsy, sometimes patients get so happy with dubious results that we feel like we're removing their happiness, or that we're secretly hoping for the worst. I hope that you're going through this with peace of mind.
- presentation 2y agoWhat was the original reason you got that PET scan that led to the cancer diagnosis? Just random luck that you happened to even discover it? Scary stuff
- chrisweekly 2y ago@jseliger, thank you for sharing. Sorry to welcome you to the club nobody wants to join. And congratulations for making it this far. And bravo for setting such an example fighting on others' behalf. I'd like to do more of that myself. My prognosis was similarly grim: median life expectancy of 18 months, 5-year survival rate of 10%. That was more than 11 years ago. My point is that nobody knows what will happen. If hearing more about my story might be helpful, or if I could send you one or two books that helped me the most, please just let me know. No pressure. In any case, know you're not alone, you're loved, and you're profoundly connected to the broader family of cancer survivors. It's a strange and terrible gift, to be confronted with your mortality. All good thoughts your way, brother.
- belkarx 2y agoHow does one even find doctors who actually care? seems like luck that you managed :(
- stefantalpalaru 2y ago[dead]
- cultofmetatron 2y agohad to look up what a glossectomy is. all I can say is OOF... there are few things I wouldn't rather lose than my tongue.
- yard2010 2y agoI don't know you but I love you. I wish I could help you even feel those feelings for you. Hang in there
- lpillar 2y agoMy wife and I are currently fighting a terminal cancer diagnosis too. I made a video about our experiences so far, if anyone's interested. https://youtu.be/HmQebpztDwQ https://youtu.be/HmQebpztDwQ