8/29/2002
Subject: AVS cancer update - late august
From: Brian Bulkowski
To: AVS cancer list

Greetings!

It's been quite a while since the last update. There's a short and simple reason. Ann's doing great! She continues to be symptom free, and we keep learning how to live with this diagnosis. It's surreal, in a way. If you've talked to Ann recently, or seen her, she's the Ann she's always been, energetic and thoughtful and everything else that Ann is. Yet we have this diagnosis hanging over our heads. We're not at the stage of daily drama anymore, which makes it harder to write about, but better to live with.

We're in a time of waiting -- waiting and living. We've had no new diagnostic information since July 9th - the last scan - and won't get any more until September 16th. Just to recap, the radiation treatment (or something!) was extraordinarily effective, reducing and in some areas completely removing the cancer, yet some areas of tumor remain in the lower part of the left side. As before, it's a complicated picture, with some parts growing slowly, and the fast growing areas responding very well to the treatment. We've had all the head radiation Ann can have during her life, so that option of treatment is closed to us. DNA damage is cumulative, and any more would risk dire long term problems. We still drop by to see our radiation guy, Dr Larson, when we're over in that part of town.

The bottom line is that we have little information about what's been happening in her brain since early July, yet according to Dr. Prados, what's happening on the outside is a good indicator. The continued lack of symptoms is not only a day-to-day blessing, but a positive indicator for the future. We've been able to take the steroid dose down to nearly nothing (right now at 2mg, and dropping) with some minor headaches that go away quickly. Dr Prados said that is a known positive indicator. I've become impressed by how he very carefully feels all the internal organs during our visits, a real laying on of hands. It's a small thing, but it creates an atmosphere of attention.

Our relationship with Dr Prados has improved. Our last meeting with him, on August 12th, went well. He seemed more cordial and informative than before. It might be that we're enthusiastically a part of his research trial, or that we didn't make a fuss with the dosing mistake [which he said was a big hairy deal, reported to various government agencies]. He just seemed a bit more real. We talked for a while about the Dilantin Ann is taking, how it might effect OSI-774 elimination from the body, and how we might be able to change study arms. He was candid, and clear that we could do it any way we wanted. We decided to stay with the Dilantin, because switching arms would require a two-week period with no treatment.

Ann is continuing on the concurrent OSI-774 and Temodar therapy. We're about 7 weeks into it. The OSI-774 is taken every day, in the morning. Ann's at 250mg now, the same as when she started. We continue to hope that the dose escalates, because she took 350mg for a week at the beginning, and showed no serious side effects. The trial we're on is a trial to find the safe dose, but the drug is known to have very few side effects from the trials with lung cancer over the last few years. The side effects are acne, diarrhea, and nothing worse at 150mg, although Ann is taking a higher dose. OSI isn't a typical chemo drug. It doesn't go after all dividing cells. Instead, it goes after a particular cell growth signaling protein, so it has no effect on the immune system. That's what allows her to take it every day, and we're agitating to increase the dose. OSI-774 is one of the most promising approaches, but there are a few others out there. The most interesting continue to be the induced hyperthyroidism treatment at Cincinnati, the penicillamine copper therapy, and CCI-779 plus Temodar, and Temodar plus Accutane.

In terms of everyday living, it's hard to explain the kind of difficulty we have. In some sense, there's no difficulty at all. Visit the doctor only once every month, take pills every day, do a variety of healing exercises, visualizations. See the healers. Yet, week by week, the usual detritus of living piles up, and it can be hard to see any particular progress. While being confronted with the preciousness and impermanence of life, we're doing what we've done during the rest of our life - which isn't a bad thing, but now we're itching for a bit more.

In the last 5 weeks, we've had visits from both my father John and from Nick (Woozle), Livia, and Anna, who live variously in the Georgia and North Carolina areas. Anna is great, a precocious 7 year old with a sense of humor that is at once goofy and a bit dark. They're close friends. We spent most of the time together just hanging out, eating pizza, and doing cool tourist things like walking across the golden gate bridge. Nick's mother and sister live in the bay area, so we got to see them as well. My father always comes out and visits for a week, and beside usual restaurants [more sushi than usual], he did some errands and trimmed a tree that was shading the tomatoes.

I'll be going off to burning man for a few days. Rosin Coven has a few gigs lined up, at least as lined up as burning man gets, and it'll be a chance to relax for a few days. While I'm gone, Ann's looking forward to a few days focusing on a paper that needs a revision. She's also going to start volunteering at a Montessori school once a week, but we're not sure when that will start. We're working toward a semi-working retreat at Pt Reyes in a few weeks to work intensively on her other writing projects, like the contemporary surrealist games book. For myself, work is rather tough, and I need to find some time to organize and upload pictures we've taken. That'll likely be my next mail updates!

Ann continues to be bowled over by the strength and support that everyone has given her. We're right about at the four month mark, with Ann in full spirits, great energy, living her life fully, doing all the things she something that seemed nearly impossible and ripped from us during those first days of fear and diagnosis. Thank you. As we move to a time of adding more meaning and enjoyment to every day, we wish the same greater depth and happiness in your lives, and will do what we can to help.

And we'll need to have a great big party at 6 months!

Be well.

infinite love,
-brianb