Thursday. Jan 8th, 2004
Last Saturday, we returned from the trip East for my mother's funeral. Snow on the ground when we arrived on Tuesday, but it was starting to melt by the time we left Saturday morning. The funeral was just ok, except for a fabulous baritone who did a wonderful rendition of "Ave, Maria". There was a classic image at the grave site after the funeral Mass, as the immediate family gathered around the grave and huddled together against a frigid wind blowing across the snow - straight out of some gangster movie. It was fun to talk with a lot of relatives I hadn't seen for many years at the funeral, but the best part was that evening, when all my siblings and in-laws gathered at my sister's house to talk.
My father has taken it all well and seems ready to move to an assisted living home. We are trying to move him as soon as they have a vacancy. All in all, it was an important trip home.
My last MRI (Dec 29th) looked very good. Previous indications of tumors have pretty much disappeared. Nonetheless, my walk is worse and I am adjusting to the idea of a long, slow decline. There does not seem to be a simple connection between the MRI images and how I feel. We will talk it over with Susan Chang at UCSF next week
Thursday. Jan 15th
My father was moved into an assisted living home on Tuesday and so far he seems quite happy there. If he continues to settle in, my parent's house will be sold, and a major chapter in my family's history will come to a close.
I had an appointment with my neuro-oncologist today, but my MRI scans have been stable and good and we decided that I did not need to drive all the way up to San Francisco. Instead I talked with her resident/assistant about why I still have serious physical problems (especially balance and walking) even though the MRI scans look good. We will try reducing some medications, such as Dilantin.
Wednesday, Feb 4th
It's been a while since I updated this page, and I will try to fill in events of the past two or three weeks. In general, I continue stable, much as I have been for the past few months, with one big exception. Two weeks ago, my condition suddenly and mysteriously collapsed over a period of 12 hours. My legs were so weak that I could not get out of bed or get up from the floor by myself. I had no bladder control and little appetite. After a couple of days, I started recovering, and by the 5th day, was pretty much back to normal, where I remain. I don't understand how my condition could go down and then back up so quickly, especially given that my recent MRI scans have looked so good. (If you want to know more about this event, I've posted a detailed chronology.)
Otherwise, life is going along about as usual. I have started an exercise class for cancer patients sponsored by the Stanford Prevention Research Center called "Living Strong, Living Well". So far. I've been enjoying the class and doing fine. Of course, the competition is primarily 80-year-old women with cancer.
Wednesday, Feb 18th
The last couple of weeks have been stable and uneventful. I am definitely over my late January collapse, altho the cause still not clear what happened. My current guess is that a fever interacted with my neurological condition somehow and may have induced a mild brain seizure, the aftereffects of which persisted for a few days. Anyway, I'm back to normal, but still it's worrisome that my condition could drop so precipitously with no advance warning.
I'm still going to the exercise class. Several people have dropped out, so I am able to get some individual help with my left side, which is still very weak. The class also motivates me to do more exercise at home. The exercise may be helping, but it's hard to tell at this point. My energy is good and Judith says that I am thinking and speaking more clearly lately. I've mostly finished our income taxes (with the help of TurboTax) and it didn't seem any harder than usual. And my mood is generally cheerful these days, too. We had a good rainstorm yesterday, but the weather is mostly sunny today. My heart is particularly warmed by visits and notes from friends and family. Thank you, all.