August 8, 2024
Had radiation treatment 20 of 30 today. Two-thirds of the way done. Still have the fatigue and weird effects on my sense of taste. There's two big bald spots on my head, and enough of my beard is gone to have to trim the whole thing way down to keep from looking lopsided. The fatigue and taste changes will reverse themselves after this is done, but the hair losses may be permanent. Oh well. Bald patches while being alive I can deal with.
Still recovering from the lung surgery, which was three weeks ago today. Still getting a little winded from walks of any kind of distance, but catching my breath quicker, and breathing better once they've had the workout. One of my incisions came a little open on the outside (still nice and closed on the inside), so it's been a bit sore. The pathology came back, and although on the day of the surgery the nodule didn't look to be related to the melanoma on my head and in the lymph nodes they took out before, they're now thinking it actually is. What was removed was well beyond the margins of the tumor though, and no cancerous cells were detected at the edges. And after all their tests, it seems what was there is highly treatable by immunotherapy, so if there are any little demon cells still in there, they should get taken care of shortly.
At this point I'm nearly done with radiation treatments, and I've had a whole new surgery, but I haven't heard a peep from my medical oncologist for literally over two months. I can't seem to get anything out of him or his office either by contacting them directly or by having other doctors I've been seeing nudge them. So far, the surgeons I've seen at Virginia Mason have been my fiercest and most dedicated advocates, and have basically bent over backward to do everything they can to help me. But nothing but crickets from VM medical oncology for a while now. I had the people I've been seeing for radiation at Evergreen refer me to Fred Hutch Cancer Center, and I've talked with them about transferring my care there. I've got an appointment set with them next month, which was their earliest available, but they'll be looking for an earlier spot to open for me. I can deal with exams and scans and tests and surgeries and radiation just fine. What I can't deal with is not knowing what's going on, and being left on my own to keep everything straight while bouncing around from doctor to doctor to doctor, being fatigued and a bit brain fogged from radiation, having surgery and spending a lot of the recovery time made stupid by pain meds. Un-fucking-acceptable, especially when I keep getting told I have an aggressive and tricky form of cancer. So hopefully I'll get in with them soon.
