That's a tragic story regardless of the medical hope. I don't think I would want to trade that level of discomfort for a little more time with my partner, but I couldn't say for sure.
Those articles by both Jake and his wive are so well written and I would love to read them fully but I can't.
It's gut wrenching that I am just a CT scan away to being in the same (somewhat comparable) situation.
I shouldn't compare fates and still my mind wanders around the topic every time.
The facts they both present in a scientific manner (like remission rates) scare me to my bone. I cannot fathom what he and his loved ones are going through and that makes it even clearer what I have burdened on my wife, children and family.
I know this comment is ultimately me shouting "please let us both live" with many words and maybe this is me being a self serving asshole, maybe it is that. I don't know anymore.
I would love to offer the promise that everything is going to be alright but I cannot. I am just scared as hell and somehow I needed to get this out.
I find myself checking if this guy is alive or not a few times a week. It's all very sad.
I have never understood how can we, in the same breath, admit the horrifying death that await us all, and also parrot that Gilgamesh story or the like about how futile is to resist. Sure, the blood of the virgins doesn't work, but now we have incredibly good science and technology. For God's sake, we even have enough compute to run monstrous language models; I have an inkling that kind of compute would go a long way on simulating cellular processes. Shouldn't we all[1] just go a bit crazy and start trying to prevent our little, chaotic sacks of bio-molecules from going amok?
[^1]:"All", as opposed to just scientists and clinicians.
i’ve been following Jake’s story since one of his posts was here on HN a few months ago. Both him and his wife are excellent writers. I cannot emphasize enough how horrified I am reading every word. What an utterly ghastly experience. I watched my uncle die from cancer as well. I am all too familiar with how this (usually) goes in the end stages.
good luck, jake. may your days be filled with appreciation and love and tranquility.
[deleted, thank you for giving me more to read (: ]
> "I’ve made hundreds of phone calls and e-mails, pleaded with physicians, pharmaceutical companies and clinical investigators. I’ve begged for appointments to establish care, open trial slots, opportunities to be screened for eligibility—really—for Jake’s life."
This just shouldn't be necessary. In 2023, we as a race should be able to figure out a better way to efficiently channel patients with needs towards clinical trials that might serve those needs.
(And I say this as someone who works in this industry.)