@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.
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 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.
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.
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.
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.)
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.
Anyone who goes through something like this is an inspiration to those they interact with. I wish the absolute best for you.
Thanks 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.
My 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
I don't know you but I love you. I wish I could help you even feel those feelings for you.
Hang in there
What 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
had 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.
Good post.
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How does one even find doctors who actually care? seems like luck that you managed :(
@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.