Introduction
I have a telephone appointment with a cancer surgeon on Tuesday, and I’ll probably be referred to an oncologist who can discuss various treatment options; and since I’m more comfortable with the written word than with the spoken word, principally because I can fix my mistakes before others know that I’ve made them 😎 , I want to write a short post to get my thoughts together in (I hope) some cogent way, and maybe to help the doctors be prepared with objections if they think I’m on the wrong track.
It’s possible that they’ll want me to communicate on-line using something called “MyChart”, but the messages that I can send are kind of like what I imagine tweets to be except for allowing more characters, so I’ve split this into four sections that will easily fit into four MyChart messages. In any event, I’ll try to keep it short.
My goals
First of all, since I don’t believe in the supernatural, I’m not afraid of being dead: it seems highly unlikely to me that there will be any me to be dead.
But I’m guessing that the process of dying won’t be any fun; so I think I’d like that to happen in some controlled way rather than, say, being surprised by a heart attack. At present, I think I’d want to let the cancer take its normal course, eventually in some kind of hospice care where they keep me as comfortable as is legal in Missouri (most definitely a red state).
Also, since I’m a fairly extreme introvert, I don’t have anyone that I’d be selfishly leaving behind.
My questions
What I’m hoping for are guesses, for various treatment options, about how much time I have left 1) to be sufficiently independent that I can travel to meetings of an ISO standards committee that I serve on and 2) to retain sufficient cognitive abilities (e.g., not all hopped up on pain killers) that I can still use my computer.
– I’ve already made all the reservations for the trip to Hawaiʻi in November.
– I’ll probably just Zoom in to the Tokyo meeting in March in any event because I wouldn’t want to sit in an airplane long enough to get there.
– I’d like to make one or both of the Summer and Fall meetings in 2024 if I’m still around then.
Bottom line
I understand that surgery is the best option to let me die of something other than cancer; but like I said, that’s not my goal.
Can I make any reasonable guesses about how much longer I’d have a reasonable quality of life given other treatment options (including doing nothing at all)? I’m not nearly as good at math as I’d like to be, but I understand some elementary statistics. If I can get median, mean and standard deviation, I’d know what to do with that. Alternatively, if I can get min and max along with probabilities that those numbers are close, I could deal with that as well.
With that information, I think I could make a rational decision about what I’d want to do and to make plans for it.
Update 2023-07-12: as expected, the surgeon couldn’t really talk about anything except surgery; but he did refer me to a radiation guy with whom I have an appointment in a couple of days.
Since writing this post originally, I’ve made an offer to host a meeting of the C++ standards committee next summer (the plan for Stockholm has fallen through); so there’s now some urgency to decide on a course of treatment, possibly including doing nothing at all, that will give me a good likelihood of still being active enough for a year or so to do all the necessary administrivia. We’ll see…
I think I’d like that to happen in some controlled way rather than, say, being surprised by a heart attack
I have a friend who had one of those and managed to survive – but he says it’s very painful and really terrifying and he would not recommend it. Wafting out in a haze of drugs sounds nice.
I knew a guy who died of pancreatic cancer. They set him up with a morphine drip that he could use to manage his pain and, surprise, he mashed the button over and over and stopped being alive that way. From the peaceful smile on his face, it seemed like it wasn’t bad.
Some free advice, worth every penny you paid for it:
Piece of advice #1: Consider chemotherapy. If your cancer is small enough, you could consider radiation and chemotherapy simultaneously. There is a small chance of cure with radiation/chemotherapy, which may or may not be worth the treatment for you, depending on any number of things that I don’t know but your oncologist will. Even if you don’t go that route, palliative chemotherapy can be helpful in reducing pain and other symptoms. Radiation can too at times. Again, multiple variables that I don’t know, so talk to your oncologist.
Piece of advice #2: Take the morphine. Cancer is painful. Morphine and other opiates can help. Opiates work better for cancer pain than other chronic pain and for some reason seem to be less addicting when given for cancer pain than in other situations. Maybe the association with cancer overwhelms the high and leaves you not wanting it if you aren’t in pain.
Piece of advice #3: If you don’t feel like your oncologist is working with you to make a plan for your care that fits your needs, get another oncologist. That should go without saying, but it doesn’t always, so here it is.
Marcus:
That was my thought as well. And given all that’s happening these days, the rise of far-right extremists (not just in the US, in Europe too), and the global warming that Abe Drayton posts about, this might be a good time to go. Indeed, I’m beginning to fear for those who survive me.
Dianne, thanks for the advice. Yeah, I definitely want to talk to an oncologist to get a feel for what the various treatment options are and how long, with each of them, I’d have a decent quality of life. Just “the chance of being alive in five years” won’t be helpful since that’s not necessarily my goal.
Bill, if you’re able to and feel comfortable with it, recruit a friend to act as your advocate–especially if it’s your decision to waft away in a haze (and there’s nothing wrong with that choice). Thanks to all the addictive personalities who have always found a way to get high (moonshine, prescriptive drugs, street drugs, cough syrup, etc. etc.), the medical response is often to offer no pain relief whatsoever because “you might be scamming drugs”. Obviously refusing pain relief to a patient with very little time ahead of them because they’re VERY CLEARLY DYING OF CANCER is ridiculous, but here we are, in that ridiculous and cruel timeline. An advocate can help you get what you need when you lack the strength to fight for it yourself.
katydid@#4:
the medical response is often to offer no pain relief whatsoever because “you might be scamming drugs”
Yes, unfortunately, christian sadists are willing to place themselves across the exit path, to force a patient to fully experience a painful death. My friend who died of the pancreatic cancer had to go into a coma because of kidney failure, in order to escape them and die a “natural death.”
The various “death with dignity” systems are also compromised, though someone with a late stage inoperable cancer can get a clean exit. The motherfuckers have cleverly arranged a Catch-22 scenario for alzheimers’/dementia patients that you cannot arrange an exit while you are still “compos mentis” but also cannot when you’ve lost your mind too much to agree to the procedure. I was, literally, told that you need to starve yourself into kidney failure/coma and then it’s all easy street and dignified.