14 ms·

Notes on My Chemotherapy

209 points by whatrocks 6y ago

sievzig 6y ago
Thanks for the update Charlie. Wishing you a speedy recovery.
isoprophlex 6y ago
My infusion center is the adult center. I'm not sure I could stomach seeing children and babies getting chemo. I'm crying right now even thinking about it (which hurts, if you remember my side effects). Powerful ending to the article... indeed, fuck cancer. Get well soon, stay well!
- mmaunder 6y ago
  I beat the crap out of stage 4 blood cancer a few years ago and am now officially cured. I realized my battle was nothing when I was getting my second round of chemo, and a happy bald 5 year old with a lollipop got on the elevator with me at Seattle Cancer Care Alliance (Fred Hutch) where I was being treated, and I glanced at mom and she looked so very tired.
  - rusabd 6y ago
    A lot of kids getting ALL leukemia and treatment is a year long.
    - TaupeRanger 6y ago
      The incidence rate is like 4.6 out of 100,000 in kids...let's not overstate the situation here, as bad as it feels to see or imagine a child in this situation.
      - hluska 6y ago
        That is still way too many kids.
  - aledalgrande 6y ago
    I'm very glad you healed, good sir. Always ready for good endings.
u8mybrownies 6y ago
Good luck sir!!!
lostapathy 6y ago
Good luck, and thanks for sharing. I just went through this (with a different cancer). I didn't blog about it like this, but I shared some on Facebook and that seemed to help me and the people around me a lot.
Nihilartikel 6y ago
Just taking the opportunity to chime in on this thread: Do not hesitate to press for a colonoscopy or sigmoidoscopy if you are worried about your colon health. Something is going on now where demographically much younger patients are getting polyps and colon cancer: https://www.cancer.gov/news-events/cancer-currents-blog/2020/colorectal-cancer-rising-younger-adults https://www.cancer.gov/news-events/cancer-currents-blog/2020... Doctors are still mostly operating under the old wisdom that it is not a problem for those under 60 or so. I had blood in my stool at 36, and after convincing my doctor that I wanted it checked even if it was 'probably a hemorrhoid', a sigmoidoscopy found 3 polyps. I was lucky that the big one was right at the 'front door' so to speak, otherwise the sigmoidoscopy would have not been deep enough to find them, and I might not be writing this comment today.
- CyanBird 6y ago
  Absolutely, when TotalBiscuits (John Bain) was still fighting cancer he couple times unabashedly said while doing his live starcraft 2 esports casting to everyone listening to be mindful of colon cancer, to not play dumb with it if you consistently find blood in your stool and go get yourself checked, insist on it if the doctors seem not particularly concerned He was saying that to save lives Might he rest in peace
  - dstick 6y ago
    Thanks for reiterating this. In the end, what we leave behind is the love we gave others and the wisdom we bestow. Hoping they learn sooner than us, and benefit.
  - ekianjo 6y ago
    > In late April 2014, Bain announced he had a precancerous mass in his colon, the first indications of bowel cancer, a condition with which two of his grandparents had also been diagnosed. (wikipedia) It's good to promote diagnosis, but let's also put this in perspective: he had family history of this kind of cancer. This kind of changes everything when it comes to your personal risk, just like your grand parents having Alzheimer indicate a major risk that you will get it as you age as well. This is why (good?) doctors also ask for conditions running in families.
fab1an 6y ago
The absurdity of the American health care and insurance system will never not amaze me. It's just sad and weird, and even weirder that you will always find a bunch of intelligent folks to defend it. Wishing the author, who btw is a better writer than most writers, a speedy and complete recovery.
- NortySpock 6y ago
  We're not done yet, we can still improve it, we just need to keep leaning on our congress-people to fix it.
  - niels2 6y ago
    Can't tell if this is irony.
- brigandish 6y ago
  There’s plenty about it that’s defensible, the part that seems indefensible to me is the regulatory capture that leads to situations covered in the blog where insurance won’t cover cutting edge treatments. There’s a good argument to be made that deregulation would encourage innovation and lead to dropping prices and greater supply - why capitalism should stop working its usual magic when it comes to medicine is a mystery. Edit: no blood, please!
  - refurb 6y ago
    Plenty of single payer systems (like where I live in Canada) don't cover this stuff either. The difference is is in the US it's an insurance company saying "no" and in Canada it's the gov't saying "no". And actually, since it's one system, the doctors already know it's not covered so it never comes up.
  - shakezula 6y ago
    Capitalism can't work its magic because healthcare is not a free market. It has a unique set of constraints that capitalism is particularly weak at dealing with: lack of choice (you don't get to choose which hospital you go to in a lot of circumstances), high barrier to entry, constantly changing regulatory environment, etc... The reason single payer systems work is because they're at a specific advantage for all of the constraints that healthcare systems face, including a better overall incentive alignment.
NKosmatos 6y ago
Good luck and thanks for sharing. Keep up the positive attitude, you’ve got a long road ahead of you (wait for quarterly/semiannual/annual exams...) but if you confront it as you do, you’ll be fine. To all, do frequent check ups (if you can afford it) and don’t dismiss the signs of your body. Oh and one last thing, US medical and insurance systems sucks.
fokinsean 6y ago
Good luck!
Ennea 6y ago
I really enjoy the way you write. Good luck with the cancer!
srhngpr 6y ago
This was so well written, thank you for sharing and best wishes for a speedy recovery!
jennyyang 6y ago
I pray that you succeed against this battle. I know several people who have successfully battled cancer, one who is doing it at UCSF right now and UCSF is a great hospital for that. You're young and look healthy, I am looking forward to continued decades of your posts!
trynewideas 6y ago
Some notes from experience from the other side of a failed chemo: - Not all ports are metal. Some are plastic. - Not all chemo drugs have the same side effects; even within drugs, not all implementations have the same ingredients. - Lots of chemo retrospectives talk about "nausea", but that's imprecise. Nausea and vomiting are separate things, and can be invoked separately. Some chemo drugs act on the vestibular system, which is the part of the nervous system that decides whether the body needs to vomit; some chemo drugs in your blood basically yell "PUKE PUKE PUKE" at your brain, and you vomit without nausea. Other chemo drugs do a number on dopamine or serotonin receptors, giving you intense nausea without the trigger to puke (but you might anyway). You can tell if you're in the latter bucket if chemo makes you absolutely hate chocolate, turkey, or other tryptophan- and tryamine-heavy foods — without the serotonin/dopamine boost in most chocolate, it's just a weird bitter taint that ruins sweet flavors. (Also, some chemo drugs make you REALLY crave fructose. By the bucket. Fruits, fruit-flavored candies, fruit juice, non-stop.) - If you're young and relatively healthy, there's a decent chance you'll deal with your port closing up, especially if your cycles are 3+ weeks in length. Flushing the port is time-consuming; chemo is already hard to schedule around, but if you have port issues, nothing is ever going to take just 2-4 hours. - Not sure if Charlie had to deal with pre-meds and post-med flush drips, but we did, and they're mandatory — even if you're unable to finish the infusion. - Some chemo drugs have a slim chance of causing a severe reaction. If you're going to have one, it'll be within the first 10 minutes of the first infusion. If you have one, it might be a classic sudden allergic reaction, in our case Taxol caused the throat to close up, losing the ability to speak or breathe, treated with a heavy dose of Benadryl. Regardless of the specific reaction, if it's severe then it's a massive problem going forward, because your options are to either ditch the oncologist's first-choice drug or (with a ton of suffering) try to build up a resistance in a hurry. And yeah, if you're unlucky enough to have that reaction, you're very likely going to have that violent reaction in front of an audience of everyone else getting an infusion. - One of the side-effects of chemo isn't listed here, and might not be a factor in his combo, but in general chemo has an eventual side effect point where it can't continue: the potential to cause nerve damage. This will look or feel a little like Parkinson's, with numb extremities, loss of motor functions, difficulty stringing together words/actions. At the first, slightest sign of this, chemo is over, sometimes for good. If the cancer isn't getting treated by then... good luck. - Holding off on a cycle due to low white blood cell counts is a foreign concept to me. They ran tests and infusions between cycles to keep WBC counts up, but any cycle delays were considered suicidal. Again, might've been just our treatment course (and severity; we started at stage 4). - This will vary between infusion centers, but as long as COVID is a problem, you can't rely on having in-person company with you, or contact with other people getting infusions (on account of everyone involved having massive immunity problems from the chemo). If you crave contact, bring a phone, a charger, and the longest possible cable you can get for that charger.
the_af 6y ago
Fuck cancer indeed. Charlie is the guy who wrote that awesome article about finding a working Apple II in some neighbor's garbage, asking for it and getting it to work. I still have it bookmarked. He inspired me to get a C64 (ok, I'm not a Real Programmer like him, so I got an emulator in a case that looks like a C64). I wish him the best of luck. I hope he beats this cancer.
- whatrocks 6y ago
  Haha, nice work! I want a C64 so bad! Or a VIC-20. I also really love how the new Raspberry Pi 400 keyboard thing harkens back to this era of computing: https://www.raspberrypi.org/products/raspberry-pi-400/ https://www.raspberrypi.org/products/raspberry-pi-400/
  - the_af 6y ago
    (I just realized you are Charlie). Yes, I love the look of that Raspberry and of course I want one. Do I need one? Of course not, but it would make me happy. After booting up my fake C64 and playing a few games for nostalgia's sake, I'm still struggling to find the time to learn some assembly language for it as I had planned. Did you ever find the time to do something with your Apple II? If so, you should really write about it. I really, really liked your blog post, I must have read it at least three times!
    - whatrocks 6y ago
      Not as much time as I'd like. Mostly been playing games so far (I just scored two vintage Apple II joysticks!). But one of my upcoming projects will be experimenting with its serial card. I have a vision of being able to "remote in" to the Apple II from my laptop. Then I'm thinking it will be easier to actually write code for it, since I'll be more easily able to version control it (rather than saving it down to tape or something on the actual machine). Anyway, that's what I'm thinking lately, but we'll see!
JimTheMan 6y ago
A quick question for my stateside brothers. What happens if you get cancer and can't afford chemo? What kind of care will hospitals provide?
- epmaybe 6y ago
  great question. Organizations such as the American Cancer Society will help out occasionally with treatment. If you qualify for medicaid/medicare, you can get some treatments that way. Your doctor could try and get you into trials that are funded and cover the cost of treatment. At the end of the day though, there are many that fall through the cracks of our healthcare system. And that sucks.
  - ed25519FUUU 6y ago
    Once you basically lose everything, your house, your 401k, your job, all of your savings, etc, then you declare bankruptcy. After that you’ll qualify for Medicare because your income level. That’s when the federal government steps in and you can usually get some kind of treatment. Over 60% of bankruptcies are medical related.
    - JimTheMan 6y ago
      OK, so basically once you get reduced to poverty you get some care. Does medicare give you good quality care? Someone I know recently had cancer in Australia, they are wealthy but don't have private health insurance: so they went through the public system. It seemed like they got care that was just as good to be honest. Just not a private room.
      - refurb 6y ago
        If your income is low enough, you qualify for Medicaid (which is retroactive too so will pay past bills). If you're disabled by the disease and you qualify for Social Security Income you can get covered by Medicare. If neither of those are options, may hospitals provide charity care (where most or all of the bill is forgiven - they often try to get you on Medicaid as well). And if you're truly indigent and on the street, there are hospitals like SF General where you can get care. I'm not saying that navigating the system is easy or straightforward. But there are options out there. And bankruptcy laws vary by state, but typically they can't take your home, vehicles or your retirement savings.
epmaybe 6y ago
The most frustrating thing to me is that you, the patient, had to ask the doctor who is supposed to help you coordinate your care about one of the most important pieces of the puzzle that was still pending after your procedure. All of the view alerts, the notifications, reminders, people involved in your care, fancy computer systems, read backs, none of that prevented the potential delay in your treatment. It could have been months before someone noticed and said "hey, we should probably get you into treatment."
- aledalgrande 6y ago
  Yeah this doesn't give me a lot of confidence in doctors in US. I had friends in ER and the doctor was "trying" different medicines to see what worked. Then wanted to charge $2K for a signature. I don't really know what the people droning about US healthcare being the best in the world are about.
  - Daho0n 6y ago
    The US is huge so finding something somewhere that is best or top of class is quite easy. That the best treatment might be on the other coast than you and only for the 1% that can both afford it and who happen to know about that specific treatment doesn't seem to count when looking at "Best in the world".
    - aledalgrande 6y ago
      This was in LA with an insurance from top company at director level, so I am still not convinced.
- 01100011 6y ago
  Once you have dealt with a major illness, you realize there is very little 'care' in health care. I sympathize with health care workers(mom is an RN, wife is in school now), but it is an unfortunate situation. In my experience, outcomes are determined by how much you are willing to manage your own care and, importantly, fight when necessary.
dnquark 6y ago
This hits home: "You must become your own health advocate" To this I will add, if there's an outstanding health issue, even if it seems minor, address it without delay. Pound the phones, demand specialist referrals, and for the love of god don't engage in avoidant behavior or optimism bias. Timely diagnosis can be a difference between life and death.
_jaik 6y ago
I went through stage IV colon cancer in 2020 at age 37. Just had my 3-month follow-up CT scan today, actually. I had 3 surgeries (colon resection, port installation, liver resection & ablation), 12 rounds of chemo (FOLFOX + Vectibix), 9 before liver surgery, 3 after. I had plenty of fatigue and cold sensitivity in my extremities. I have some peripheral neuropathy maybe 9 months in, and continuing. It was worse, but improved some. It could take up to a year to go away, if ever. Theoretically, I'm in remission or "no evidence of disease" (NED). One thing I haven't seen mentioned yet is that being diagnosed with cancer can give you some anxiety. Doctors can prescribe an anti-anxiety medicine like escitolopram to take care of it. Having a clear head during a hard time can help you make better decisions, ask better questions, and get better care. If you've been diagnosed with cancer and want to talk, email me: [redacted]. Fuck cancer.
- MattRix 6y ago
  What caused the fatigue and cold sensitivity and peripheral neuropathy? The cancer or the various cancer treatments?
  - ks6g10 6y ago
    Having had almost the same history and chemotherapy, the cold sensitivity and neuropathy is cause by platinum based drugs, in this case oxaliplatin. The cold sensitivity is quite fascinating i found, its like your skin reaching a threshold and feels like pressing against some cold metal. As for the fatigue, just the chemotherapy doing its stuff, never had fatigue from the cancer.
    - MattRix 6y ago
      Ahh ok. I’ve been experiencing sporadic peripheral neuropathy and cold sensitivity for years, which my doctor has been unable to diagnose, so I was just curious if it might be a symptom of something else somehow. Thanks for the information, I appreciate it.
- Daho0n 6y ago
  I just want to add a somewhat different view here. I had cancer when I was 30 (testicular cancer). Healthy today luckily. But everyone said I was taking it very well and clear headed and I think so too if I have to say so myself but some years later I had a massive panic attack and started having huge problems with anxiety and panic attacks. It got so bad all I could do for weeks were to sit in my sofa being scared I was sick and dying from cancer, not quite awake but never quite sleeping either. It came at first because I had blood in my urine (had it checked, nothing wrong, gone again) but the attacks became a returning pattern at the same time every year. The differing view is that unlike GP I already were on Escitalopram at the time I had cancer. I later found out that there is a massive problem with people getting anxiety and panic attacks while on escitalopram and a lot get cured after having stopped, including me. Please do see a doctor and educate yourself if you have symptoms like blood in your stool, urine or if one testicle have a lump or feels slightly harder (internal tumour) but also educate yourself before taking any medication! It may save your life taking it but it may also ruin it. Edit to add: Also remember that cancer often doesn't hurt at all (at first) so don't be one of those that don't go to the doctor because it doesn't hurt. Not having pain is often A Bad Sign. Off you go!
29athrowaway 6y ago
Fenbendazole (the active ingredient in dog dewormer medication Panacur) can inhibit cancer growth. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2687140/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2687140/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6085345/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6085345/ Unfortunately, it causes acute hepatitis and it won't be authorized for clinical trials.
jimmcslim 6y ago
I had a brief battle with cancer last year; surgery and radiation therapy for a pT3N0 tumour on my jaw/neck. It wasn’t a walk in the park and there’s some potential long term side effects (osteoradionecrosis and radiation induced fibrosis) but happy to have avoided chemotherapy. Good luck to all living with cancer.
codecamper 6y ago
The OP should read about senescent cells & how they relate to cancer & metastasis. Maybe there are trials ongoing to prevent relapses in some higher tech sort of way. Best of luck.

209 points by whatrocks 6y ago

Thanks for the update Charlie. Wishing you a speedy recovery.

My infusion center is the adult center. I'm not sure I could stomach seeing children and babies getting chemo. I'm crying right now even thinking about it (which hurts, if you remember my side effects). Powerful ending to the article... indeed, fuck cancer. Get well soon, stay well!

mmaunder 6y ago
I beat the crap out of stage 4 blood cancer a few years ago and am now officially cured. I realized my battle was nothing when I was getting my second round of chemo, and a happy bald 5 year old with a lollipop got on the elevator with me at Seattle Cancer Care Alliance (Fred Hutch) where I was being treated, and I glanced at mom and she looked so very tired.
- rusabd 6y ago
  A lot of kids getting ALL leukemia and treatment is a year long.
  - TaupeRanger 6y ago
    The incidence rate is like 4.6 out of 100,000 in kids...let's not overstate the situation here, as bad as it feels to see or imagine a child in this situation.
    - hluska 6y ago
      That is still way too many kids.
- aledalgrande 6y ago
  I'm very glad you healed, good sir. Always ready for good endings.

u8mybrownies 6y ago

Good luck sir!!!

lostapathy 6y ago

Good luck, and thanks for sharing. I just went through this (with a different cancer). I didn't blog about it like this, but I shared some on Facebook and that seemed to help me and the people around me a lot.

Nihilartikel 6y ago

Just taking the opportunity to chime in on this thread: Do not hesitate to press for a colonoscopy or sigmoidoscopy if you are worried about your colon health. Something is going on now where demographically much younger patients are getting polyps and colon cancer: https://www.cancer.gov/news-events/cancer-currents-blog/2020/colorectal-cancer-rising-younger-adults https://www.cancer.gov/news-events/cancer-currents-blog/2020... Doctors are still mostly operating under the old wisdom that it is not a problem for those under 60 or so. I had blood in my stool at 36, and after convincing my doctor that I wanted it checked even if it was 'probably a hemorrhoid', a sigmoidoscopy found 3 polyps. I was lucky that the big one was right at the 'front door' so to speak, otherwise the sigmoidoscopy would have not been deep enough to find them, and I might not be writing this comment today.

CyanBird 6y ago
Absolutely, when TotalBiscuits (John Bain) was still fighting cancer he couple times unabashedly said while doing his live starcraft 2 esports casting to everyone listening to be mindful of colon cancer, to not play dumb with it if you consistently find blood in your stool and go get yourself checked, insist on it if the doctors seem not particularly concerned He was saying that to save lives Might he rest in peace
- dstick 6y ago
  Thanks for reiterating this. In the end, what we leave behind is the love we gave others and the wisdom we bestow. Hoping they learn sooner than us, and benefit.
- ekianjo 6y ago
  > In late April 2014, Bain announced he had a precancerous mass in his colon, the first indications of bowel cancer, a condition with which two of his grandparents had also been diagnosed. (wikipedia) It's good to promote diagnosis, but let's also put this in perspective: he had family history of this kind of cancer. This kind of changes everything when it comes to your personal risk, just like your grand parents having Alzheimer indicate a major risk that you will get it as you age as well. This is why (good?) doctors also ask for conditions running in families.

fab1an 6y ago

The absurdity of the American health care and insurance system will never not amaze me. It's just sad and weird, and even weirder that you will always find a bunch of intelligent folks to defend it. Wishing the author, who btw is a better writer than most writers, a speedy and complete recovery.

NortySpock 6y ago
We're not done yet, we can still improve it, we just need to keep leaning on our congress-people to fix it.
- niels2 6y ago
  Can't tell if this is irony.
brigandish 6y ago
There’s plenty about it that’s defensible, the part that seems indefensible to me is the regulatory capture that leads to situations covered in the blog where insurance won’t cover cutting edge treatments. There’s a good argument to be made that deregulation would encourage innovation and lead to dropping prices and greater supply - why capitalism should stop working its usual magic when it comes to medicine is a mystery. Edit: no blood, please!
- refurb 6y ago
  Plenty of single payer systems (like where I live in Canada) don't cover this stuff either. The difference is is in the US it's an insurance company saying "no" and in Canada it's the gov't saying "no". And actually, since it's one system, the doctors already know it's not covered so it never comes up.
- shakezula 6y ago
  Capitalism can't work its magic because healthcare is not a free market. It has a unique set of constraints that capitalism is particularly weak at dealing with: lack of choice (you don't get to choose which hospital you go to in a lot of circumstances), high barrier to entry, constantly changing regulatory environment, etc... The reason single payer systems work is because they're at a specific advantage for all of the constraints that healthcare systems face, including a better overall incentive alignment.

NKosmatos 6y ago

Good luck and thanks for sharing. Keep up the positive attitude, you’ve got a long road ahead of you (wait for quarterly/semiannual/annual exams...) but if you confront it as you do, you’ll be fine. To all, do frequent check ups (if you can afford it) and don’t dismiss the signs of your body. Oh and one last thing, US medical and insurance systems sucks.

fokinsean 6y ago

Good luck!

Ennea 6y ago

I really enjoy the way you write. Good luck with the cancer!

srhngpr 6y ago

This was so well written, thank you for sharing and best wishes for a speedy recovery!

jennyyang 6y ago

I pray that you succeed against this battle. I know several people who have successfully battled cancer, one who is doing it at UCSF right now and UCSF is a great hospital for that. You're young and look healthy, I am looking forward to continued decades of your posts!

trynewideas 6y ago

Some notes from experience from the other side of a failed chemo: - Not all ports are metal. Some are plastic. - Not all chemo drugs have the same side effects; even within drugs, not all implementations have the same ingredients. - Lots of chemo retrospectives talk about "nausea", but that's imprecise. Nausea and vomiting are separate things, and can be invoked separately. Some chemo drugs act on the vestibular system, which is the part of the nervous system that decides whether the body needs to vomit; some chemo drugs in your blood basically yell "PUKE PUKE PUKE" at your brain, and you vomit without nausea. Other chemo drugs do a number on dopamine or serotonin receptors, giving you intense nausea without the trigger to puke (but you might anyway). You can tell if you're in the latter bucket if chemo makes you absolutely hate chocolate, turkey, or other tryptophan- and tryamine-heavy foods — without the serotonin/dopamine boost in most chocolate, it's just a weird bitter taint that ruins sweet flavors. (Also, some chemo drugs make you REALLY crave fructose. By the bucket. Fruits, fruit-flavored candies, fruit juice, non-stop.) - If you're young and relatively healthy, there's a decent chance you'll deal with your port closing up, especially if your cycles are 3+ weeks in length. Flushing the port is time-consuming; chemo is already hard to schedule around, but if you have port issues, nothing is ever going to take just 2-4 hours. - Not sure if Charlie had to deal with pre-meds and post-med flush drips, but we did, and they're mandatory — even if you're unable to finish the infusion. - Some chemo drugs have a slim chance of causing a severe reaction. If you're going to have one, it'll be within the first 10 minutes of the first infusion. If you have one, it might be a classic sudden allergic reaction, in our case Taxol caused the throat to close up, losing the ability to speak or breathe, treated with a heavy dose of Benadryl. Regardless of the specific reaction, if it's severe then it's a massive problem going forward, because your options are to either ditch the oncologist's first-choice drug or (with a ton of suffering) try to build up a resistance in a hurry. And yeah, if you're unlucky enough to have that reaction, you're very likely going to have that violent reaction in front of an audience of everyone else getting an infusion. - One of the side-effects of chemo isn't listed here, and might not be a factor in his combo, but in general chemo has an eventual side effect point where it can't continue: the potential to cause nerve damage. This will look or feel a little like Parkinson's, with numb extremities, loss of motor functions, difficulty stringing together words/actions. At the first, slightest sign of this, chemo is over, sometimes for good. If the cancer isn't getting treated by then... good luck. - Holding off on a cycle due to low white blood cell counts is a foreign concept to me. They ran tests and infusions between cycles to keep WBC counts up, but any cycle delays were considered suicidal. Again, might've been just our treatment course (and severity; we started at stage 4). - This will vary between infusion centers, but as long as COVID is a problem, you can't rely on having in-person company with you, or contact with other people getting infusions (on account of everyone involved having massive immunity problems from the chemo). If you crave contact, bring a phone, a charger, and the longest possible cable you can get for that charger.

the_af 6y ago

Fuck cancer indeed. Charlie is the guy who wrote that awesome article about finding a working Apple II in some neighbor's garbage, asking for it and getting it to work. I still have it bookmarked. He inspired me to get a C64 (ok, I'm not a Real Programmer like him, so I got an emulator in a case that looks like a C64). I wish him the best of luck. I hope he beats this cancer.

whatrocks 6y ago
Haha, nice work! I want a C64 so bad! Or a VIC-20. I also really love how the new Raspberry Pi 400 keyboard thing harkens back to this era of computing: https://www.raspberrypi.org/products/raspberry-pi-400/ https://www.raspberrypi.org/products/raspberry-pi-400/
- the_af 6y ago
  (I just realized you are Charlie). Yes, I love the look of that Raspberry and of course I want one. Do I need one? Of course not, but it would make me happy. After booting up my fake C64 and playing a few games for nostalgia's sake, I'm still struggling to find the time to learn some assembly language for it as I had planned. Did you ever find the time to do something with your Apple II? If so, you should really write about it. I really, really liked your blog post, I must have read it at least three times!
  - whatrocks 6y ago
    Not as much time as I'd like. Mostly been playing games so far (I just scored two vintage Apple II joysticks!). But one of my upcoming projects will be experimenting with its serial card. I have a vision of being able to "remote in" to the Apple II from my laptop. Then I'm thinking it will be easier to actually write code for it, since I'll be more easily able to version control it (rather than saving it down to tape or something on the actual machine). Anyway, that's what I'm thinking lately, but we'll see!

JimTheMan 6y ago

A quick question for my stateside brothers. What happens if you get cancer and can't afford chemo? What kind of care will hospitals provide?

epmaybe 6y ago
great question. Organizations such as the American Cancer Society will help out occasionally with treatment. If you qualify for medicaid/medicare, you can get some treatments that way. Your doctor could try and get you into trials that are funded and cover the cost of treatment. At the end of the day though, there are many that fall through the cracks of our healthcare system. And that sucks.
- ed25519FUUU 6y ago
  Once you basically lose everything, your house, your 401k, your job, all of your savings, etc, then you declare bankruptcy. After that you’ll qualify for Medicare because your income level. That’s when the federal government steps in and you can usually get some kind of treatment. Over 60% of bankruptcies are medical related.
  - JimTheMan 6y ago
    OK, so basically once you get reduced to poverty you get some care. Does medicare give you good quality care? Someone I know recently had cancer in Australia, they are wealthy but don't have private health insurance: so they went through the public system. It seemed like they got care that was just as good to be honest. Just not a private room.
    - refurb 6y ago
      If your income is low enough, you qualify for Medicaid (which is retroactive too so will pay past bills). If you're disabled by the disease and you qualify for Social Security Income you can get covered by Medicare. If neither of those are options, may hospitals provide charity care (where most or all of the bill is forgiven - they often try to get you on Medicaid as well). And if you're truly indigent and on the street, there are hospitals like SF General where you can get care. I'm not saying that navigating the system is easy or straightforward. But there are options out there. And bankruptcy laws vary by state, but typically they can't take your home, vehicles or your retirement savings.

epmaybe 6y ago

The most frustrating thing to me is that you, the patient, had to ask the doctor who is supposed to help you coordinate your care about one of the most important pieces of the puzzle that was still pending after your procedure. All of the view alerts, the notifications, reminders, people involved in your care, fancy computer systems, read backs, none of that prevented the potential delay in your treatment. It could have been months before someone noticed and said "hey, we should probably get you into treatment."

aledalgrande 6y ago
Yeah this doesn't give me a lot of confidence in doctors in US. I had friends in ER and the doctor was "trying" different medicines to see what worked. Then wanted to charge $2K for a signature. I don't really know what the people droning about US healthcare being the best in the world are about.
- Daho0n 6y ago
  The US is huge so finding something somewhere that is best or top of class is quite easy. That the best treatment might be on the other coast than you and only for the 1% that can both afford it and who happen to know about that specific treatment doesn't seem to count when looking at "Best in the world".
  - aledalgrande 6y ago
    This was in LA with an insurance from top company at director level, so I am still not convinced.
01100011 6y ago
Once you have dealt with a major illness, you realize there is very little 'care' in health care. I sympathize with health care workers(mom is an RN, wife is in school now), but it is an unfortunate situation. In my experience, outcomes are determined by how much you are willing to manage your own care and, importantly, fight when necessary.

dnquark 6y ago

This hits home: "You must become your own health advocate" To this I will add, if there's an outstanding health issue, even if it seems minor, address it without delay. Pound the phones, demand specialist referrals, and for the love of god don't engage in avoidant behavior or optimism bias. Timely diagnosis can be a difference between life and death.

_jaik 6y ago

I went through stage IV colon cancer in 2020 at age 37. Just had my 3-month follow-up CT scan today, actually. I had 3 surgeries (colon resection, port installation, liver resection & ablation), 12 rounds of chemo (FOLFOX + Vectibix), 9 before liver surgery, 3 after. I had plenty of fatigue and cold sensitivity in my extremities. I have some peripheral neuropathy maybe 9 months in, and continuing. It was worse, but improved some. It could take up to a year to go away, if ever. Theoretically, I'm in remission or "no evidence of disease" (NED). One thing I haven't seen mentioned yet is that being diagnosed with cancer can give you some anxiety. Doctors can prescribe an anti-anxiety medicine like escitolopram to take care of it. Having a clear head during a hard time can help you make better decisions, ask better questions, and get better care. If you've been diagnosed with cancer and want to talk, email me: [redacted]. Fuck cancer.

MattRix 6y ago
What caused the fatigue and cold sensitivity and peripheral neuropathy? The cancer or the various cancer treatments?
- ks6g10 6y ago
  Having had almost the same history and chemotherapy, the cold sensitivity and neuropathy is cause by platinum based drugs, in this case oxaliplatin. The cold sensitivity is quite fascinating i found, its like your skin reaching a threshold and feels like pressing against some cold metal. As for the fatigue, just the chemotherapy doing its stuff, never had fatigue from the cancer.
  - MattRix 6y ago
    Ahh ok. I’ve been experiencing sporadic peripheral neuropathy and cold sensitivity for years, which my doctor has been unable to diagnose, so I was just curious if it might be a symptom of something else somehow. Thanks for the information, I appreciate it.
Daho0n 6y ago
I just want to add a somewhat different view here. I had cancer when I was 30 (testicular cancer). Healthy today luckily. But everyone said I was taking it very well and clear headed and I think so too if I have to say so myself but some years later I had a massive panic attack and started having huge problems with anxiety and panic attacks. It got so bad all I could do for weeks were to sit in my sofa being scared I was sick and dying from cancer, not quite awake but never quite sleeping either. It came at first because I had blood in my urine (had it checked, nothing wrong, gone again) but the attacks became a returning pattern at the same time every year. The differing view is that unlike GP I already were on Escitalopram at the time I had cancer. I later found out that there is a massive problem with people getting anxiety and panic attacks while on escitalopram and a lot get cured after having stopped, including me. Please do see a doctor and educate yourself if you have symptoms like blood in your stool, urine or if one testicle have a lump or feels slightly harder (internal tumour) but also educate yourself before taking any medication! It may save your life taking it but it may also ruin it. Edit to add: Also remember that cancer often doesn't hurt at all (at first) so don't be one of those that don't go to the doctor because it doesn't hurt. Not having pain is often A Bad Sign. Off you go!

29athrowaway 6y ago

Fenbendazole (the active ingredient in dog dewormer medication Panacur) can inhibit cancer growth. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2687140/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2687140/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6085345/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6085345/ Unfortunately, it causes acute hepatitis and it won't be authorized for clinical trials.

jimmcslim 6y ago

I had a brief battle with cancer last year; surgery and radiation therapy for a pT3N0 tumour on my jaw/neck. It wasn’t a walk in the park and there’s some potential long term side effects (osteoradionecrosis and radiation induced fibrosis) but happy to have avoided chemotherapy. Good luck to all living with cancer.

codecamper 6y ago

The OP should read about senescent cells & how they relate to cancer & metastasis. Maybe there are trials ongoing to prevent relapses in some higher tech sort of way. Best of luck.