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On being ready to die, and yet also now being able to swallow ice cream

243 pointsby theoldloveover 1 year ago

16 comments

Multiplayerover 1 year ago
This is gut-wrenching to read and my heart truly goes out to Jake and his family. My mother-in-law had this diagnosis and same course of treatments although she was able to keep half her tongue before the cancer eventually returned with a vengeance. Only now reading these visceral, gripping diaries do I realize how poorly I understood her physical and emotional experience. I am very, very hopeful that the coming generations of AI enhanced research will accelerate us quickly out of these almost unbelievably brutal treatments and into therapies that work non-destructively.
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EZ-Eover 1 year ago
I do not know how people can deal with the reality of their own death - every time I think about deeply or read an article about it it just destroys my entire day. The author is much braver than I am. I am very scared of death, and what happens before (illness, losing autonomy). So far I haven't found a way to accept it.
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monero-xmrover 1 year ago
My aunt - one of 9 kids, and the only one who assiduously avoided alcohol and tobacco - died at 60 from cancer on her tongue. It took about 6 months from diagnosis to death.<p>You never know when your life will change. Death is possible anytime, but also an accident, injury, death of a loved one, it can be anything. I had an early-to-mid-life crisis in my early 30s where my own mortality became much more real to me and it altered my thinking and behavior.<p>I honestly can’t say if a quick, sudden, unexpected death is preferable to a long, drawn out, terminal death that gives a long time for careful thinking and study. I think I would prefer the latter despite the indignities and pain that you succumb to, as the author clearly shows. The idea that you can be walking down the street and have a heart attack or aneurysm is deeply disturbing to me, although I know people who died this way and it is a fairly likely way to die.<p>We should always, always, always be thankful for what we have. If you wake up and you can walk, if your children are healthy, if you have food to eat. So often today we let small grievances and petty issues ruin our happiness. In reality these problems are nothing compared to true suffering.<p>A friend is a hospice worker for dying children, who helps assemble their memory books and plan their final events and wishes. She does this work week after week with multiple children at a time. Imagining the slow death of my own child, planning memories, explaining to them about heaven, it is an astronomical amount of suffering that I cannot force myself to follow a logical thought experiment to conclusion.<p>I have followed along with this brave man’s story. It can happen to anyone, at any time.<p>One idea that comforts me is that every single living creature that existed before me has died, and every creature that exists now will die, and everything in the future will die. You cannot have the gift of life without the curse of death. While we all die alone, we all experience death - it is only lonely in the actual experience but it is something that all of us will participate in.
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patryn20over 1 year ago
Thanks for continuing to write as you can.<p>Both of my parents are simultaneously dying from different forms of cancer. My father the same as yours (it started in his upper gum line). My mother a rare form of bile duct cancer. They’re not the sort to engage in psychedelics, but I suppose in some way their deep religious beliefs and experiences served the same purpose.<p>Your story and others I’ve read have really helped me understand the turmoil they’re facing internally and externally, and to analyze what I’ve been feeling to this point.<p>Perhaps a brief trip into the unknown is in my future.
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PostOnceover 1 year ago
Aside from sympathy, I also feel a sense of awe, admiration, and respect for the fighting spirit this guy has.<p>He had his tongue removed to increase his odds, is struggling with the basic sensations of being alive, is also acutely aware of staring death in the face, and yet he&#x27;s talking about clinical trials and the future.<p>Even if he loses the battle, I feel there is something gained by having fought it.<p>But of course, no matter how grim the odds, a loss is never guaranteed. I hope he someday writes a post titled &quot;remission&quot;.<p>Godspeed, Jake.
notsosmartover 1 year ago
Wow, a heart breaking read for sure. There is a gofundme for Jake here -<a href="https:&#x2F;&#x2F;www.gofundme.com&#x2F;f&#x2F;help-the-fight-against-cancer-with-jake-s" rel="nofollow noreferrer">https:&#x2F;&#x2F;www.gofundme.com&#x2F;f&#x2F;help-the-fight-against-cancer-wit...</a>
ChatGTPover 1 year ago
What a brave man to write this piece. Amazing strength.<p><i>The persistent intrusive thoughts about whether this thing, life, is worth it, remain. They’re not questions therapy can help with. They’re questions intrinsic to the damage.</i><p>This sucks but I wonder if it’s nature way of making the end easier? At some point one must reason that eternal rest is a better option ?
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c0baltover 1 year ago
At the end of the article is a link to his gofundme:<p><a href="https:&#x2F;&#x2F;www.gofundme.com&#x2F;f&#x2F;help-the-fight-against-cancer-with-jake-s" rel="nofollow noreferrer">https:&#x2F;&#x2F;www.gofundme.com&#x2F;f&#x2F;help-the-fight-against-cancer-wit...</a><p>Consider checking out for more background and information (or maybe to donate).
Moto7451over 1 year ago
My brother passed from Multiple Myeloma earlier this year. This was a rather rare instance of that disease as my brother was turning 30 in the year he contracted it. Usually you’re much older if you contract it and it may be found once something else is found.<p>He did a better job of explaining how treatment went and how it went wrong here: <a href="https:&#x2F;&#x2F;www.reddit.com&#x2F;r&#x2F;multiplemyeloma&#x2F;comments&#x2F;109nxh3&#x2F;getting_close_to_the_end_of_my_journey&#x2F;" rel="nofollow noreferrer">https:&#x2F;&#x2F;www.reddit.com&#x2F;r&#x2F;multiplemyeloma&#x2F;comments&#x2F;109nxh3&#x2F;ge...</a><p>What he would not be able to explain is how the palliative care went. I expect the author wont be able to unless he is lucky (or unlucky depending on your views on life and death) to last months&#x2F;years. Unless you set aside a good bit of money&#x2F;have a fairly good facility near you, you’re probably going to rely on friends and family for care. In the US your insurance should cover the palliative care facility and their efforts but getting a dedicated bed will cost extra. My brother worked for Apple and they did an outstanding job being supportive and had a lot of extra programs and perks to help cover many of the costs.<p>I’m located on the East Coast but took two months off from work to help care for my brother. He ended up just needing three weeks. He wrote that post right in the in between of a decline that “gradually and then suddenly” would accurately describe. He went from being cleared to drive to unable to do so within two weeks<p>His actual death was due to chronic kidney disease and the eventual renal failure&#x2F;body tail spin. Eventually eating and drinking wasn’t a reasonable or interesting thing to do. You’re in a race to consume calories but unable to keep them in your body. Your next thought might be, “drink sugar water” but you’re also limited in how much water you can drink and managing sodium and potassium in your body. Also at this point there is no outsmarting your predicament. This is where your mind goes in alternating cycles. Eventually things go poorly enough that your blood oxygen level plummets and you lose consciousness. From that point what you experience is all a thought experiment for medical professionals and the people wondering if you’re feeling any more pain at this point.<p>If you find yourself in this situation you need to find good advocates that will help you find some ability to become ready to die and eventually tell you that you’re done fighting and to enjoy the time you have. My brother got a day and a half of not having to think about potassium and sodium and dialysis before he became unresponsive and another few days before he passed. If I am in charge of advocacy again I’d try to extend that to at least the last week. In our case that wouldn’t have been too hard to do because they started warning us that his BP and pulse were marginal for dialysis and they were threatening to decline treatment in several sessions.<p>Once you get to Palliative Care, and especially the point all treatment has been stopped, your advocates&#x2F;family will be the ones giving you drugs to keep you comfortable. The palliative care providers train your advocates&#x2F;caretakers on how to give morphine and other drugs. If you’ve picked people that are particularly well organized they&#x27;ll take good care of you between the nurse visits.<p>Keep emotionally unstable people away from the nurses. We almost lost my brother’s care because one of his friends stopped taking his medications and seeing his therapist the week he heard the bad news. This turned into a really bad situation where the nurses were just a moment from walking out the door.<p>Palliative Care is not fun but I have a hard time imagining a more humane way to go aside from legal assisted suicide.
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coolThingsFirstover 1 year ago
Life just sucks and my experience has been that it has gotten progressively worse.<p>In 20s at least i had the consolation of being young but bow at early 30s there’s just nothing much to look forward to.<p>It’s just a drag
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mattbgatesover 1 year ago
He was here... and then he was gone.<p>&gt;He had no fear. He would always say, “We can’t fight it and eventually we all have to go sometime.” For the several years prior, we’d drive past the cemetary he was going to be buried at, as it was on the way to his doctor’s appointments, and I’d say to him, “That’s where you’re going to lie for an eternity.” And he would say, “Don’t remind me.” The last time I drove him to the hospital and we were driving past, I said the same thing to him. And this time, he said to me, “I think I’m ready.”<p>Read if you dare... <a href="https:&#x2F;&#x2F;confessionsoftheprofessions.com&#x2F;the-cuban-missile-crisis-veteran&#x2F;" rel="nofollow noreferrer">https:&#x2F;&#x2F;confessionsoftheprofessions.com&#x2F;the-cuban-missile-cr...</a>
sgseliger23over 1 year ago
Thank you for continuing to update on Jake’s story.
darepublicover 1 year ago
Author in so much suffering yet producing such lucid descriptions. Really puts the stoicism philosophy to a test
Towaway69over 1 year ago
For those left behind, there is a piece over at aeon[0] that helped me. It speaks of post grief disorder that can be very real.<p>[0]=<a href="https:&#x2F;&#x2F;aeon.co&#x2F;essays&#x2F;how-to-ease-the-seemingly-endless-pain-of-prolonged-grief" rel="nofollow noreferrer">https:&#x2F;&#x2F;aeon.co&#x2F;essays&#x2F;how-to-ease-the-seemingly-endless-pai...</a>
majikajaover 1 year ago
All you people who are worried about death, why aren&#x27;t you working to reduce aging and disease? Or at least donating.
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coolThingsFirstover 1 year ago
Life just sucks
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