The next day was a hard one. I didn’t feel that well, and I found myself in an unfortunate situation where anxiety about seizures was causing me to have seizure-like symptoms, in a sort of feedback loop. My doctor upped my seizure medication again, despite the fact that I thought I was at the maximum recommended dosage. (Maybe I’m some sort of medical pioneer here.) Feeling my personal power, which had served me so well until now, starting to falter, I decided to go to a support group that had been recommended by a friend of a friend, also a brain tumor survivor and a musician. The support group was for people with life-threatening diseases, through the Center for Attitudinal Healing in Sausalito, and they provided a separate support group at the same time for caregivers, so Ellen and I could drive over together and have our own groups to attend. (I don’t drive "separately" any more.)
Everyone was, in support-group fashion, expected to weigh in with stories of their struggle and their progress, and I heard some amazing (and heartbreaking) things from people who were really "walking the walk" with respect to a life-threatening disease. When it was my turn, I found myself especially anxious in describing that morning, when I was talking to my doctor and felt my left arm twitch. As we know, anxiety produces adrenaline. Sometimes it feels really good, sometimes it doesn’t. Sometimes it just feels like a dense herd of fleas is crawling up my back. But, I finished my story and left the group feeling better than when I had walked in. Ellen and I compared notes on the way home, as there were a few couples distributed over both groups. We both noted that there seems to be more laughter in the "patients" room than the "caregivers" room…probably because it’s easier to laugh at one’s own misfortunes than those of loved ones.
I was told that the most intense time would be the first 72 hours, so by Thursday, right on schedule, I started to feel better. I was also allowed to take more supplements, which helped. I found myself having to re-establish how to deal with adrenaline in my own body, which was a little strange. I tested myself to see if I could sit all the way through "The Shining" without any symptoms. (I could.) By the weekend I was feeling great, and realized that it had been nearly a week since my last seizure…a big improvement. I was invited to a music jam on Sunday to which I bravely contributed some original material, in addition to "Blowin’ in the Wind" and "Imagine." (It was sort of a peace-seeking sort of day.)
As I write this I am into my second weekend of the new treatment regime, and I continue to feel great! My sister referred me to a website about an enzyme from Russia that acts as a powerful immune system booster, and I’ve got that going, too. (It seems to give me a little extra zip, although I’m taking so many things it’s hard to tell.) Thursday the boys were out of school, so we played golf. Speaking of which…those of you who have ever played with me are not going to believe this, but…I had a three-hole stretch where I went par-birdie-par, narrowly missing consecutive birdies, which has never ever happened. Sometimes the mojo visits you, and just as quickly, it goes away. As was the case here. Yesterday I took Ginger on a four-mile walk. This morning, Ellen and I took a Chi Gung class in San Rafael. And it’s been almost two weeks since my last seizure.
So just to review: I’m having a great time, feeling good and enjoying myself as much as possible. Ellen is giving me better care and more love than anyone could possibly be expected to. Hopefully the next MRI will confirm what I feel, which is that the current treatment is working. (Or at least I think it is, which might be more important. How far would Dumbo have gotten if he didn’t think the Magic Feather would work?) And I continue to feel the warmth, prayers and support from all of you who are with me in some form on this journey.
Sometimes I’m asked if I’ve considered the possibility that I might be dying.
My answer is, "No, I’m living like crazy!"
Peace and love (now more than ever)
Dan
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