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.
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.
It is good to hear about her changed perspective and that the cancer is currently undetectable. I hope she continues to have health and you both have a good long life together. I lost my wife to cancer over nine months. We had thirty years together, but I certainly wanted more. Best to you both.
I just celebrated my 9th wedding anniversary but my wife and I have been together for 15 years. She lost her mom to cancer a couple years ago so that’s been in the back of my mind, randomly freaking me out.
It's been 40 years and I'm not sure if I have completely processed it. I can still hear her voice. Best of luck to you and your wife, I hope you have many good and pleasant years together.
I can't imagine what it was like for her to face the same diagnosis that took her father, only to have such a different outcome. The part about the drug becoming available a month before her diagnosis gave me chills...
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.
> Anyone who exercises regularly knows that there are always plenty of reasons to avoid it: you didn’t sleep well, you have an important project to finish, or you’re sore from a previous workout.
Ahnold Schwarzenegger remarked that the improvements come when your really don't want to exercise, but do it anyway.
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. 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.
My husband is the same as you. He doesn't want to prolong the inevitable and suffer needlessly. Whether you fight or not, we all die eventually. And he would rather be equanimous with it than rage against it. I admire his courage. And yours.
I think there was a post here a few months back on how most doctors (when sick with terminal disease) decide against medical interventions and die on their own terms.
I don't know who you are but I wish you the best of luck. Keep your spirit up. I'm glad that medicine is slowly making progress in cancer therapies and I sincerely hope that we can completely beat it in the not so far future.
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.
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.
but that's a reflection of how poor of an understanding we have of our own biology, right? if we understood ourselves like we understood computer hardware then we could have ~deterministic drugs. it seems plausible that AI will speed up the research and understanding of ourselves and the increased confidence will reduce the need for as careful of review.
That's a big fat if. We think we understand plant biology but no one has ever created one gram of artificial wood. This isn't attacking you personally but it's pretty clear many on this site have never spent ten years of their life on a drug to watch it fail in phase three trials.
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.
[1] https://furbo.org/2013/06/28/the-origin-of-tweet/
[2] https://furbo.org/2007/08/19/mobiletwitterrific/
Following the rename we can now call them Xits, the x being pronounced as in Chinese ('sh').
The origin of “tweet” at Twitter (2013) - https://news.ycombinator.com/item?id=27045787 - May 2021 (49 comments)
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.
I just celebrated my 9th wedding anniversary but my wife and I have been together for 15 years. She lost her mom to cancer a couple years ago so that’s been in the back of my mind, randomly freaking me out.
Just focusing on enjoying a day at a time.
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.
Ahnold Schwarzenegger remarked that the improvements come when your really don't want to exercise, but do it anyway.
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.
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.