I met with a number of radiation oncologists on Friday. Apparently the cancer is spreading through my spinal fluid, causing the dural metastases in the lining surrounding my brain. They believe the lesions on the spine are sticking to the edges of the spinal cord and wrapping around the nerves (according to the careful notes Geri took!).
The good news is that the rapidity with which this big tumour has grown means it might respond equally rapidly to radiation treatment. Who knew. The bad news: I'm unlikely to regain the hearing in my right ear. I'm not sure about my equilibrium. Geri says she heard the doc say my balance would return to normal. The main purpose of the treatment is to stop the tumour growth and keep the symptoms from getting worse. There's a 70 t0 80 percent chance it will help.
To prevent new lesions from popping up, they decided to do whole-brain radiation. A month after it's done, they'll do an MRI, and if the tumours aren't shrinking, they can do a focused treatment called stereotactic radiosurgery, which is a one-time blast on the tumours themselves. Geri's notes say: A metal frame is screwed into the skull to keep the head still -- the doc says there would be no scarring. Freezing is local and there is no pain.
I'm also going to lose my hair again, at least the hair on my head (retaining my eyebrows will be a bonus). The brain doctor told me that your hair can disappear permanently in a strip down the middle, but Dr. Noguff said she'd never seen that happen. I've made an appointment for Tuesday to get most of it off, in any case. Other possible side effects: sore throat, headache, more dizziness and head pressure before it gets better, ringing in the ears and short-term memory loss that should return in six to 12 months. If I live long enough, I might get cataracts sooner than usual (not much need to worry about that, probably).
The surprise has been the treatments themselves, of which I've now had two. I've received a total of 50 radiation treatments this year alone, not to mention 25 of them six years ago. As I've said before, the treatments to my breast, armpit and spine didn't cause any sensations; they're like X-rays, and it's easy to believe while you're having one that it isn't doing much. The gradual onset of side effects -- and even improvement in your condition -- lets you know slowly that the treatment is real and effective.
For whole-brain radiation, a mesh face mask is molded to your skull; you are pinned down by it tightly during every treatment, looking a little like Hannibal Lecter, I would think. During my first treatment, I waited for the customary high-pitched whine of the beam, which I expected only to hear, not to feel. Suddenly I had the sensation that my brain was lighting up. It was subtle, but I had the definite impression that something had gripped my brain lightly. Even weirder, I could smell a metallic odour, almost as though something was burning. I mentioned to the technician that I could feel something, and she volunteered that patients claim they feel and smell whole-brain radiation. It brought home to me how powerful this tool is and what is really happening to me. Once you've radiated your whole brain, you kind of feel like the horse is out of the barn; there's no going back. It's not like I can do without my brain the way I can do without a breast or a few lymph nodes.
Anyway, I don't feel too bad as long as I keep still. The dizziness is hard to get used to and the deafness makes my head feel hollow. And I increasingly feel like I simply can't balance on my wobbly spine. When I sit on a hard chair, especially to take a shower, I sway like a palm tree in a breeze.
Pollyanna moments:
- Visits from friends and family, and a spin around the block in the sunshine.
- I wheeled myself to the Second Cup on the first floor to buy a treat -- an independent foray.
- I was served a half-decent breakfast this morning.
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