Update: 1/12/07

Hello Friends and Family:

Phil and I have returned from two days in San Francisco where we met with Dr. Mitchel Berger, the Director of the Brain Tumor Research Center at UCSF.
(http://neurosurgery.medschool.ucsf.edu/faculty_staff/department_faculty/berger.html)
We had been dreading the appointment for fear that we would feel overwhelmed and down again after the visit. It has generally taken us a couple of days to regroup after a doctor’s appointment, so we were prepared to just go to the appointment and then hunker down and deal with it afterward. Our meeting with Dr. Berger went very well, and we felt pretty good after talking with him. He was relaxed and very informative, and he put us at ease.

He generally confirmed Dr. Kokkino’s initial diagnosis of low-grade brain tumor, and he agreed with the recommendation to have a biopsy to be certain. The biopsy will tell us what kind of cell is involved and that has something to do with how fast or slow the tumor is growing or may grow. We asked about the risks of biopsy, and he gave exactly the same percentages that Dr. Kokkino had given us. We remarked about that, and Dr. Berger said, “well, I wrote the book on that.” We smiled, and he said, “I mean, I really did write the definitive text on that.” That was encouraging. He told us the Brain Tumor Research Center has 18 neurosurgeons and scientists whose work is focused exclusively on brain tumors and their treatments. We found this very encouraging, too. He also outlined the kind of treatment he would recommend for Phil. He said that brain tumors like his are treated with a “very well-tolerated” chemotherapy, and that it is much milder than the kind of chemo used to treat cancers in other parts of the body.

At the end of the consultation with him, he told us, “You have every reason to remain positive. You should be living your life and staying positive.” (Now, I think if someone had said that to us in the first month post seizure, we would have said, “remain posi... huh?” But these days, that makes more sense to both of us. In fact, it felt a bit like a new lease on life.)

Despite this consultation going well, we were tired afterward. We returned to the timeshare/hotel and took a long nap. We went out in the late afternoon and evening and we rode a cable car down to Fisherman’s Wharf and back. The conductor(?) instructed us to stand on the running board for the ride, and while the idea was a bit scary to both of us, we were too embarrassed to admit it, so up and off we went, apprehensive, hanging on tight, gradually taking in more and more of the experience and finding, unexpectedly, beauty and excitement on the ride. It was a turning point for both of us. I suppose that there are two ways to shrink a tumor. You can shrink it physically, or you can live your life so large around it that it grows smaller by comparison. We have been learning the latter in the past few weeks.

Next steps: We will be meeting with Dr. Kokkino in a couple of weeks to discuss and plan for the biopsy. The plan is to have Dr. Kokkino perform the biopsy so that Phil can recuperate at home.

We continue to read Dr. Bernie Siegel’s books about people whose lives have been healed by their illness (interesting concept) and we are experiencing some of that in our own lives. So, life is good.

We will send our next update after we meet with Dr. Kokkino in a couple of weeks.
As always, we have appreciated your thoughts and prayers for us. We know they are having a very positive influence on us and our situation.

Love,
Phil and Elizabeth