5/13/2002
Subject Ann update -- treatment started, no home
From: Brian Bulkowski
To: AVS Cancer list

Dear friends of Ann,

I last spoke to you at the end of last week, after we had an "up day" after meeting with the doctors at UCSF. Drs. Prados and Larson, and the nurse staff, have been great to us. There were certain logistical hiccups, like getting the chemo drugs so quickly, and getting a blood draw as a baseline for the chemo so fast. We surprised them by starting treatment that quickly!

But start we did. The first treatment was on Friday with 200 centiGrays of radiation across most of the head, and 150mg per day of Temodar. Radiation is weekdays only, but chemo is every day. Now that's it's Monday, I'm asking some questions of the doctors about exactly what their surgical strategy might be (for example, can we use Gamma Knife to go after the many small, hard to reach tumors), and to ask about anti-angeogenesis drugs (Thalidomide). I can see logical reasons for delaying each of those, but want to fully understand why they chose the path they have, and what options we might have coming up. As before, they expect to take another MRI in about 2 weeks and make some treatment decisions at that point. That's not common - usually they do the whole 6 weeks and then see what happened.

Ann's been in great health, and tolerating the Temodar very well. She still seems a bit more energetic than I've seen her in a while, and we hope that continues. The therapy has had no effect on her at all, yet.

We've been asked to be in a study by the Magnetic Resonance Laboratory (http://picasso.ucsf.edu/), which should give us better & more access to interesting scan data. Notably, they have pioneered the use of MRS (Magnetic Resonance Spectroscopy) (simple explanation: "http://www.shu.ac.uk/schools/sci/chem/tutorials/molspec/nmr1.htm" ). That, and the prayer, will keep us kicking.

In other areas, luck has been mixed. The primary house we wanted, in Rockridge, did not go our way. The woman was nice enough about it, but all I wanted was to live there. Carl is ploughing through options and trying to get us more interviews. I know I'll feel 70% more calm once we know our next house is a healing, calm place near our friends. Any leads appreciated! The most important thing is a great feeling. The construction noise next door, and the early start, is getting to us. Rather soon we're going to have to consider putting lots of our stuff in storage, which would give us more options (like staying in a B&B for a week or two).

We're still ploughing through all the information people have sent us on diets without a firm decision. There sure is a lot of it! We're considering macrobiotic, but also more common balanced diets that may contain more choices. Ann's already started on the path, eating oatmeal in the morning, no meat, and organic produce. The UCSF doctors are telling us to eat healthy, but beyond that they don't consider our process to be unusual. Chinese herb appointment is tomorrow. Ann is doing great with meditation, currently at once a day. Thanks to Kay for providing a Tibetean singing bowl!

We've been keeping our spirits up by putting as much into each day as possible. Friday was mostly errands and getting ready for the therapy, such as finding the chemo drugs and getting a grip on the insurance situation. On Saturday, we did a small hike up in Tilden park at Inspiration Point. It was a crystal clear day, and the views were awesome. On Saturday night, we went out to a south african vegetarian restaurant, as Ann's making the move in that dietary direction, and partially as a mother's day celebration for my mother, Wendy. We couldn't remember the last time both her kids - me and Julie - were together. Sunday was pretty much of a "down day", with Ann doing some clothes shopping (to celebrate the treatment) and going to the gym. She's been at the gym each day now.

We're starting to pull our lives together in a post-diagnosis way. Last night Ann started making a list of what she wanted to accomplish during the coming months and years. Everyone says that having goals and desires and continuing to do stuff is one of the most important factors. We can't just be "people surviving" but find a way to thrive and achieve at the same time. Every day has to count.

love,
-brianb