This is my last post of 2022. Sorry for the self indulgence, but it’s not everyday that you discover you have a likely fatal disease and who knows? This information may be of use to others.
I’ve let the thought that I will survive my brain cancer enter my mind. I am now on chemotherapy and my brain is getting highly targeted radiation. But I’ve heard two first hand stories now of people who have survived my form of cancer, which is typically fatal. The first was a neighbor, who was a retired physician. His stepson died of my condition, but when he practiced he knew someone who had survived. The other day, on my first day of brain irradiation, I was getting my blood drawn at the hospital where the radiation occurred. The phlebotomist said a friend of hers survived too. So it’s unlikely, but not impossible.
If the cancer is small and well encapsulated, a combination of radiation and chemotherapy could kill any remaining cells. That’s the whole purpose of what I’m going through. Radiation gets likely spots in the brain where the cancer may linger, based on an MRI after my surgery. I take an anticancer drug (Temodar) an hour before radiation. To reduce the possibility of nausea, I take another drug to prevent that two hours before radiation. For three hours before radiation, I can’t eat. Since my appointment time is 10:10 AM, this is very inconvenient. If I’m up early enough, I can have some food but must finish by 7:10 AM. Mostly though I wait until after radiation, and eat something like a brunch sometime close to 11 AM.
This is annoying. On the other hand, I am blessed to have a hospital that can do this just three miles away from my home. The procedure itself lasts about fifteen minutes. With drive time, the whole thing takes about 45 minutes. That’s about as convenient as it gets. I have 44 of these radiation sessions planned, generally Monday through Friday, excepting holidays. Four treatments are done; 40 to go.
Before the first radiation treatment, they created a form fitting mask on my face made of plastic. This immobilizes my head during treatment so they zap the exact spots. I get laid on my back while a crazy machine moves around me and rotates the platform I lie on. You can tell when the radiation begins by the buzzing sound, which last twenty to 40 seconds. It doesn’t hurt, but I do notice an odd smell when it occurs. Perhaps some of my hair is frying.
The radiation creates a high temperature spot in the brain, that presumably kills whatever is there. I may lose a little hair temporarily but it should all grow back. I’ve noticed a white streak of hair on the right side of my face near the location of the tumor. It’s unclear if this was due to the surgery or the subsequent radiation and chemotherapy. I suspect it will remain white, reminding me of my advancing age.
It usually takes a week or more for side effects to manifest, if they occur at all. So far I’ve only noticed a little gurgling from my stomach after I take the Zofran. My stomach is otherwise empty, after all. At best it is a little uncomfortable.
I don’t know why I’m being so successful putting thoughts of death away. It likely has something to do with feeling great, doing my daily walks again and being able to drive again too. It may be I’m constitutionally unable to dwell on my decline too long. But some part of me just doesn’t believe this will kill me. I do have some factors in my favor: relatively young, good health and some protein markers that improve my odds. Also, my tumor appears to have been wholly on the surface of the brain, so likely easy to remove it all.
When not getting radiation, I still take my chemo drugs, which must be done on an empty stomach. On these days, at least I can time taking the drugs to work with my natural schedule, which likes a normal breakfast around 8 AM.
After radiation, chemo and about a month of waiting a new MRI will get taken of my brain to assess progress. So it’s reasonable to assume the cancer should shrink and my quality of life should improve while it does. If my case were always fatal, the radiation and chemotherapy would be rather pointless. So I should remain in good health for at least much of 2023.
With this in mind, we booked an Alaskan cruise in May with some friends. It gives us something to look forward to, and it was on our list for 2023 as well. This makes me feel better and improves my spirits.
And I can retain a not unreasonable hope that I can beat this thing and perhaps make it to my eighties and beyond. If it happens though, I need not thank God, but in the quick and excellent care I’ve received from Massachusetts General Hospital and their neurology and oncology teams.