7/12/2002
Subject: AVS Update - news still great!
From: Brian Bulkowski
To: Ann cancer list

Hi Folks,

It's been a long time since the last full update, and I said to myself that I'm going to keep this short and write more often, but once I get started - there's so much to say.

On Tuesday (7/9) we had another scan (MRS as usual), and on Wednesday morning we met with Dr Prados to go over the results. He let the scans speak for themselves, but it's clear that the cancer is much, much reduced. As in, nearly gone. Amazing. Miraculous. There are few other words to describe it. Dr Prados was more modest, saying that he sees 3-4 patients a year with this kind of response, out of about 500 patients. So we're down in the 1% range.

We're spending the next few days absorbing the medical information and doing a little more research, but mostly we're CELEBRATING. Ann's taking all today off with no work, just to relax. We're going to do one "off diet" meal, Ann's choice. You all should celebrate, too! Thanks to you, we've not given up, but gotten strong as the weeks have passed. As I said in my first mail, this is a long struggle, and there will be high points and low points. With my personality, I tend to be always looking forward, and not living as much in the present. Ann's prodding me to enjoy this particular present. This is one of the high points, where we can all be thankful of the community that has helped heal and support Ann. I see it all as part of a whole, and the whole is working. Ann and I have been leaning on everyone to get through some of the tougher days, and here we are, with a good result.

We didn't ask Dr Prados about what this might predict for the future. He didn't say, and we didn't ask. We've already "beat the odds" rather severely, and aren't very interested in hearing more about those stupid odds. It is clear that she's out of the kind of immediate danger that she was in a few months ago. We're also going to drop by our old friend Dr Larson, and see what he might have to say.

Ann's feeling great. Ann felt a little sludgy and slow around the end of the chemo/radiation treatment (w/e of June 15 in particular), which was to be expected. The week after that - the last week of radiation - was a very small area, so the rest of her brain was already recovering at that point. The standard chemo nausea never showed up, which seems like the norm now, with these lower impact chemo drugs, and the new, powerful anti-nausea agents. However, after coming off those treatments, her energy went up even higher. There are no signs of deficits of any sort.

We spent a lot of time planning for this week's doctor stuff, but also found time to go to the Zoo and see the new lemur exhibit with the Wynkoops. Lemurs have been a strong part of Ann's visualization routine, so seeing a small  forest of them was exciting. They're somewhat like monkeys in behavior, and sometimes go into raucous group screams.
http://www.sfzoo.org/cgi-bin/exhibits.py?ID=24
We also saw the Sweerts exhibit at the Legion of Honor
http://www.thinker.org/legion/
and are trying to shoehorn in a visit to the Yoko Ono exhibit at the SFMOMA
www.sfmoma.com
One friend saw it in NY and liked it.

Here's the "funny anecdote" for this go around. Ann's had some irregular menstrual bleeding, which is not uncommon for these kinds of chemo regimes. We were referred off to Ob/Gyn for a work up, and so went over to that part of UCSF on Wednesday. We saw a great doctor there, who recommended a set of cancer screening tests (like pap smear), and also to re-do the ultrasound that found the fibroid. All good. She also recommended a pregnancy test, just to be sure. We had one a few months ago, before going on the Temodar, so were rather sure it would be negative. The doctor came back and said it was *positive*. We were shocked, and rather freaked out. That would effect whether we could have more chemo, and effect whether we could go on any clinical trials, until we got that sorted out. We were also rather sure Ann wasn't actually pregnant, so it was a big surprise. We freaked out - screaming, sobbing, etc - while the doctor vanished for a few minutes. She came back in a minute, and told us that the whole thing had been a mistake. There were two sample cups in the bathroom, and someone had picked up the wrong one. Ann was not pregnant. Ann's reaction was "I hope that whoever is pregnant is quite happy about those results." We'll have a followup with that ob/gyn doctor in a few weeks to go over the lab results, but she didn't seem overly concerned.

With this good medical news, we're starting to focus on the future, and sort out what we'd like to accomplish over the coming months, and years, be it publishing books, helping children, or anything else. More on that in the coming weeks.

I've been back to playing with the band, all in preparation for a big show at one of the best San Francisco music venues, the Great American Music Hall (GAMH). It's an old vaudeville hall, built before electricity, so it has a great sound. Since they pride themselves on their sound, they have great sound people, and make a point of long sound checks to get things right. That's important for Rosin Coven, with all the complexity in our music. The show was this past Wednesday (not the best night), but the hall was fairly full, and we sounded great. We've wanted to play there for a number of years, and were totally on fire. I haven't had as much fun performing in a long time.

The Cragmont house is still great. As I write this, the sun's filtering in through the neighbor's bamboo. The kitties feel like they're in a jungle. Cato has been stymied on the mouse catching front - perhaps all his urban techniques don't work as well with the suburban mice. The two little tomato plants are starting to flower, and Ann's quite fond of telling the time in the morning by which particular geranium plant is lit by the sun.

We're approaching the question of future medical directions. In our talk with Dr Prados, he recommended continuing the Temodar immediately - the cancer's not all gone, and with GBM, is never really all gone. He pointed out that treatment based on the general mechanism of DNA breakage is working very well, so let's keep hitting it, which sounds good to us. Given that, the question is what to add. The two that he brought up were a trial drug he's involved with, OSI-774 (EGFR blocker), which is already nearing approval for other forms of cancer, and Accutane. I'm having a little trouble digging up cancer info on Accutane (an anti-acne drug) as used for cancer, but that's the weekend's project. Both are very low side effect, and work on very different mechanisms of inter-cellular signaling.

Our thanks to all of you for helping in this struggle is limitless. I know that this would not have been possible without the strength, support, and healing power that all of you have brought to bear. It's so hard to try to think of anything more profound to say. As I've said in other missives, the simple, sometimes trite, phrases sometimes are all one really means.

Thank you.

infinite love,
-brianb