I’m not sure there’s anything that evokes a more discordant set of emotions in me than an optimistic cancer fighter. I feel fear, frustration, hope, joy, confusion, anger…
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.
My mom fought like this and died slowly. Dad didn't and died fast. I admire Mr. Hockenberry's courage and my mom's, because I'm pretty sure I don't have it. It's easier for me to face death than that injection into the spine. I guess I take after dad. I plan to rage against the dying of the light, and then fold.
If you can make that joke about your spinal tap going to eleven, you are a tough motherfucker.
Best of luck to Craig. If you don't know who he is, he's the reason we call(ed) Twitter posts 'tweets' [1] and also wrote perhaps the first pre-SDK iPhone app from the outside [2].
Ah, I feel a kinship.. in 2007 I got an iPhone, followed the guide to install the homebrew SDK on Linux, and managed to get it to work to create iPhone apps. At first they'd run on jailbroken phones (there was a command to "sign" them), later I installed a Hackintosh and XCode and even got the Apple Dev program subscription and sold one app on their store.
Ai can accelerate a lot of things but drug development is mostly depending on long processes involving human reviews and human trials that can't be shortened unless you do a massive regulation reform.
The mundanity of the last paragraph made me smile. That desire to just go back to normal -walking, debugging, comfort- after moments like that is incredibly under-rated.
Methotrexate is such a gnarly drug, my partner was on it for rheumatoid arthritis for a little bit, but the side effects were too awful for her to continue it. Luckily there was alternatives. Didn't know it was used in chemo!
I take it for RA, and am kind of amazed I've not had any real side effects per se. Daily Folic Acid (which I take) is supposed to help. I take it once a week (20 mg). And was also kind of surprised when I started reading up on it what it also was used for.
When my wife was diagnosed with stage 3 bowel cancer earlier this year, she was essentially prepared to die. She didn't even cry once. Her father had died from the same cancer at around the same age as her (early 40s), in the most horrific way imaginable. Her father used to work for the Soviet military in charge of a team of people who worked on propaganda so he was a strong believer in communism and he was devastated by the collapse of the USSR; his entire world had fallen apart. But then bowel cancer finished him off. My wife was in her teens at the time and she said he was extremely angry and not himself for years until he died. The chemo made him extremely sick, destroyed his body, and he had to have a colostomy bag. Years later, after my wife met me, we experienced a lot of hardship together; just one episode of bad luck after another... Like, almost every aspect of our lives which we didn't control. So by the time she got her cancer diagnosis, it's as though she was expecting it.
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.
[1] https://furbo.org/2013/06/28/the-origin-of-tweet/
[2] https://furbo.org/2007/08/19/mobiletwitterrific/
Psoriasis, eczema and psoriatic arthritis being three that maybe you wouldn't think of when someone brings up methotrexate.
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.