A Health Update
furbo.org
furbo.org
The origin of “tweet” at Twitter (2013) - https://news.ycombinator.com/item?id=27045787 - May 2021 (49 comments)
This was the third time, and the second metastasis. This time round, the spread was very advanced and encompassed her internal organs, even surrounding the port catheter.
She knew this time would be her last, so she tried to help us prepare. But it wasn’t enough. It’s never enough. I guess my emotions are still raw that I’m struggling to work and keep to life’s commitments but I try. My mother’s resilience is embodied in what she taught me as a young child through to adulthood.
This time, only a month and a week ago, she had lost too much weight for another round of chemo. The medical intervention was purely palliative: CSCI and fluids.
She passed away at 0929, not long after my father arrived after I had spent the night in hospital with her. The last thing she asked me for that morning was a sip of tea.
It turns out that she has a relatively rare genetic condition which increases the probability of bowel cancer by about 10x... These cancers are known to respond very poorly to standard chemo (and likely explains her father's horrible death decades earlier). This is where our luck finally turned though. We got lucky, possibly for the first time since we've been together. Her cancer turned out to be a kind which is highly responsive to immunotherapy. The most recent trial for the relevant class of drugs showed an unprecedented 100% complete response in about 40 patients (Dostarlimab). Moreover, that same class of (very expensive) drugs became available for her exact case, on the subsidized public list in my country, just one month prior to her diagnosis. After her first month of treatment, the tumor had shrunk by like 50% in diameter. Now, 5 months later, there is no evidence of cancer on the MRI.
I feel like the experience has completely changed my wife's perspective of life in a fundamental way. Before this, she lived her entire life expecting that things never get better and all news is bad news. Systems decay, collapse and people die.
These days I often think about the ancient Chinese tale "The old man lost his horse." It's insane how little control we actually have over the most important aspects of our lives and how something terrible (like a tumor which doesn't respond to chemo) can become a positive (but responds extremely well to immunotherapy). Also, it's quite inspiring to think about how people identified this horrible class of the most untreatable cancers in existence and decided to do something about it, and now it seems like they've become the most treatable of all cancers, with the fewest side effects too. It's a testament to the good things innovation can create when people focus on the worst problems, the worst injustices of human existence.
When I was a teen I watched my mom battle cancer to a draw. Only in my late 30s did the repressed memories start returning. I got to remember her voice again, but I also got to remember the rest. And now my only plan is to just not get cancer, because it’s all far too much to even think about.
I don’t pity Craig, I envy him. I’m jealous, even. Because he’s discovered or was always imbued with the power to fight an unfair battle on his terms. If it’s ever my turn I hope I can be like him.
If you can make that joke about your spinal tap going to eleven, you are a tough motherfucker.
It's a tough decision.
Ahnold Schwarzenegger remarked that the improvements come when your really don't want to exercise, but do it anyway.
Psoriasis, eczema and psoriatic arthritis being three that maybe you wouldn't think of when someone brings up methotrexate.
There's likely lots still to discover about biology and A.I. doesn't generate new data, rather rearranging old data. That's still helpful but developing new tools to make basic science discoveries to expand the knowledge pool seems to be the rate limiting factor rather than rearranging existing knowledge.