Thursday, August 7, 2008

Therapy

I have promised several people I'd update them about my latest therapies, so I guess I'd better get around to it.



At the end of spring my scans showed a suspicious spot and l had just had a grand mal seizure. I decided to go back to Washington for a few weeks to recover and see how my new seizure medication would affect me. Of course, we discovered that I don't respond at all well to it. I, of course, had rare but dangerous reaction. My eyes grew very irritated and my sight deteriorated. The neurologist said to immediately stop. This side effect can lead to total and permanent blindness. I've always had bad luck with medicine. A general physician then strongly urged me to get another MRI and tried to arrange it the same day but when I arrived at the imaging facility, apparently there was a mix up and I would have to come back the following Monday. I was frustrated, had already had a long hot day, and was still feeling the effects of the topomax. So my brain decided to have a partial seizure. When I finally got an MRI and met with my neuro-oncologist, he reported that the spot had grown and appeared to be tumor regrowth. By then we had already concluded that I would have to spend most of the summer in Washington. After considering the options, I decided to do a couple rounds of chemo and then get another MRI and probably get the radio-oncologist try to gamma-knife it to death. Unfortunately, this means I will not be returning to school in the fall. Oh well, maybe, just maybe, I'll be back later.
Meanwhile, I'll focus on therapy at UWMC, which has one of the the world's best neurological rehabilitation programs. I've spent a lot of time there and know a lot of the therapists and doctors. Last week I had an appointment with a boss doctor to determine how they can best help me. It was like seeing an old friend, and she suggested that I write a review of the Kindle from an accessibility perspective for the rehab newsletter. This week I had botox injections to help relax my right hand and wrist, and evaluations for physical and occupational therapy. The plan is to improve my walking, which will probably involve a custom ankle brace, and seeing if the botox relaxes my hand enough to get it in a brace. Next month I get to have a speech eval and neurophych eval. Those are always fun but exhausting. It was nice to see people again and meet new ones, and I look forward to continuing rehab. I am not looking forward to more chemo, but I'm exited about experiencing gamma-knife. Apparently it involves bolting a halo onto my skull, scanning my brain using the halo as reference, and then crunching the numbers to make a radioactive helmet to attach to the halo and focus radiation on the tumor for about an hours. Poor tumor, it's just a baby and it gets poisoned then irradiated. And I get a front seat from which to watch! Wish I liked popcorn.

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