Super Bon!

Cancer crawl, 8 March 2025

(That’s T minus minus one)

A quick and with apologies vague update.

I am back in the hospital. I arrived on Thursday extremely dehydrated but also with brain inflammation. Brain was especially concerning because there is not much room for swelling in there. Both are out of their acute phase.

Further issues came up — including an ill advised laryngoplasty (failed and sent my throat into spasm) that I shouldn’t have decided to do. My bad. Took all day to recover to where I was beforehand. So now I’m likely here a few more days. Carrie is here, place is comfortable, docs are good.

Autocorrect is awful. Love to you all.

Cancer Crawl 4 March 2025

Yesterday I finished my radiation treatments, collected my mask (for art) and rung a bell. Now the recovery begins. Theoretically I should feel less like hell in a week, but we shall see. In the meantime it’s a LOT of sleep and not a whole lot else. My job is basically to sleep. It turns out the brain is one of the most sensitive organs to radiation, so it’s been a real challenge. As always, during my recovery I will of course be happy to have news, pet pictures or other frivolity in the form of email or messages from anyone who cares to share.

Cancer Crawl 27 Feb 25

It’s been an up and down ride on the fatigue train. (And my thumb is still numb so sorry for typos.). When it’s total, it’s total. Yesterday I was so tired for parts of the day that I had to settle down before I could fall asleep. probably a stew of sedatives from vomiting on Monday and steroids in my system. Often it’s just sleep–16 hours or thereabouts. Last night I was up listening to music for a couple chunks of time. I remember the distinct feeling of “my god, I’m. having an actual thought right now.” I still remember the thought but don’t quite have it in me to explain–nor is it that interesting except in its thoughtness. Other things I want but do not offer: to play some music (maybe next week?); to read the paper. Right now my only goal is getting to radiation every day.. 3 to go including today.

Cancer Crawl 23 Feb 2025

Sorry for the radio silence. It may go on like this for a bit. Weds (T-2) was fabulous. My talk went off very, I got lots of great feedback and questions. It was perhaps TOTALLY INSANE to give the talk on day 2 of radiation but it worked out great. And I am so relieved to have done if before symptoms set in.

But boy did they set in. Thursday and Friday featured double helpings of puking, probably from the dementia meds, which made me very weak. Over the weekend we experimented and I am hoping I can skip those and stay on the steroids. I wouldn’t call myself perky but I am no longer weak.

The other thing is the fatigue kicked in. I just awoke from my second nap of the day, this one 3 hours. The radiation oncologist warned me about brain fatigue–it and the liver are the worst organs for radiation fatigue. And holy shit was he right. All I can do is rest and not a whole lot else.

On top of that I have some weird symptoms that may be radiotherapy or immunotherapy related like a numb thumb. No way to tell the proper cause. And really annoying for typing as you might imagine.

I will try and post again later in the week but frequency will have to be dictated by ability. I am at least pain free, and able to move when I’m motivated. And I don’t really have to do anything except get through this, so wish me bon courage. I am working on being the least interesting version of myself. Carrie has been keeping me upright (only when needed) and helping me through the difficult parts.

Cancer Crawl, 18 Feb 2025

That’s “T minus ten.”

I had my first dose of radiation today. Besides the better mask, they now allow you (encourage even) to crank music in the room while the procedure happens. I chose XTC Black Sea. The room is totally different from the Jewish but not fancier. Just different. I think there may be more radiation rooms, though, as the family waiting area was happening.

Earlier in the day we met with someone from palliative care, who had some ideas on handling my vomiting, which we are currently trying out. For those who don’t know, palliative care is more integrative and often has additional ideas for symptom relief. Maybe I’ll be able to write “more news when it doesn’t happen.”

14 Feb 2025 Cancer Crawl

So today I woke up before 6am to get down to Mass General for my first infusion. As a bonus, I fell asleep with a stuffed animal next to me and later awoke with Carrie sleeping to my side, so that was awesome. She arrived “late” last night.

I have done far less reading on immunotherapy than other kinds of drugs and options, simply because it’s obviously the best choice for my heart right now, it might help with my lungs as well, and it has the fewest side effects. There’s also exhaustion factor: we turned over the radiation so much at first that I didn’t have a lot of space left for thinking through immunotherapy. So we just went for it.

Side note: I realize there are many opinions on this, but having worked with a lot of different kinds of cancer doctors, I’ve learned that I prefer situations where I can simply trust the doctor or group of doctors. That’s my method for reading reports, for instance, which appear sometimes instantly in the patient portal here, but are best interpreted by someone who is not me. The possibilities for cancer research online are potentially infinite, and my patient group has been great for filling in some of the blanks, but with big treatment decisions, at least in my case, there is something to be said for ceding control.

So, immunotherapy. As I understand it, immunotherapy tries to convince your immune system to attack the cancer but not other things. It can also attack other things, which is why a person on immunotherapy can become immunocompromised or have other issues, like the system attacking the skin or one of the organs. The other thing is that the odds aren’t super high that it will work. It could wind up doing nothing, but the only way to find out is to try it, so that’s what we are doing.

This morning’s appointment involved a meeting with my Boston oncologist, a nurse practitioner, a couple nurses, and a panel of bloods being taken. We asked a lot of questions and learned about the drugs. After all that, I headed up to the 8th floor, which is where they do chemo (“immuno” in my case I guess), and was feeling thankful that I was doing immunotherapy, which only takes about half an hour once you’ve got the IV in and meds ready. It’s just a bag of meds that gets mixed up, and goes in through an IV. So I guess it’s still less like tea and more akin to “makes its own sauce.” Here’s hoping.

Cancer Crawl 8 Feb 2025

It was an absolutely exhausting week but in the end it’s not so hard. There’s a three page document that lists side effects and likely outcomes, and you sign it, and then they can radiate your brain. And it was so anticlimactic because I’d been around the block twice with the radiation oncologist (his tagline is “you never want to meet me professionally”), talked with two oncologists, and endocrinologist, family members, friends, etc. I’d talked it to death and then on Friday it was time to make the choice and try to kill cancer. And that’s what I did. I had no more questions.

I have an awesome mask that I get to take home with me when I’m done. They are now mesh masks which is a whole different vibe from the semi-plaster mask I wore in 2010 (TW: scary and/or hilarious mask). Very much “moving through a wormhole in the future” rather than “low budget horror film.” You’ll have to trust me for now.

The start of external beam radiation has been delayed to 18 Feb so they can make some adjustments–fine with me, I want them to get it right. It’ll be 10 doses, and I’ll start to feel the side effects sometime around the second five doses. Both times I went in the past — for 30 doses in 2010 and for 5 in 2024 — I did not bring guests except once for Carrie to see how it works. But I’m thinking about it this time, just as a social thing and frankly because this full-time cancer patient thing is a hell of a lot of work and it is wearing me down because having the symptoms is already exhausting.

For instance, this week I had appoints with physical therapy (twice), oncology, neurology, endocrinology, radiation oncology and radiology, and then on top of that I had two short notice meetings with neuropsychology. The first was to get a sense of me and my needs, the second was to run a 75-minute battery of tests including, I think, some of the ones that were administered on Donald Trump (name as many animals as you can that begin with the letter “L”). I don’t have the results yet but I can tell you my visual recall is for shit. You show me shapes, you take them away, I forget shapes. Words and numbers I’m just fine. This confirms my career choices not to become a painter, architect, or mapmaker. Or to try to draw cats. I may or may not be a very stable genius, but I have a baseline to test against in the future if that becomes necessary or useful.

If that’s not enough, I have two other doctors I imagine running around on hamster wheels ordering other tests. There’s no emergency to either but somehow I now have three different CT scans in the same week (because there’s also oncology). I am going to have to try to fix that. Happily, I have no appointments next week other than PT, which I love because it’s (usually) progress.

I know I promised more writing on the heart and it will probably have to come at some point. I don’t have much to offer at the moment besides the fact that there is a(n off-label) treatment plan that may or may not work, that treatment plan features a drug which involved old people on TV baking misshapen bread while a litany of side effects is read out, and I’ve never been on a drug that’s been advertised before. The plan has been approved, it involved infusions, and when I start doing it, I suppose I will want to write something about infusions as they are new to me. Unless we are talking about tea, which we are not.