11/13/2002
Subject: AVS Update - 6 months
From: Brian Bulkowski
To: AVS Cancer list

Hi All,

Our 6 month party on Cragmont Ave was great! We were especially glad of the chance to thank so many of the people who have contributed to our success thus far. I couldn't quite count the number of people who showed up, but my best guess is about 30. Between the kids and the grownups, it was a great Sunday afternoon hanging out with everyone. We made a run down to both the SCRAP store and a regular art supply store, and spread everything on a big table for kids and adults. Just a second ago, Ann muttered "Kids love carpet scraps," a fact we didn't fully appreciate until now. As usual, I bought way too much food and drink, but no one went away hungry and I'm still eating Thai leftovers.  It's cheered us greatly, and we've spent the last few days looking at each other and saying, "Remember on Sunday, when we had that great party, and lots of people came?"

Halloween was also great fun. It's a big deal in San Francisco, but we didn't make it down to the Castro. Rosin Coven was playing at the DNA, but we had sound checked the night before, so Ann and I went trick-or-treating with the Wynkoops. Ann had a great costume as a bee. Somehow the bald head added to the look. Ann's niece Anna was also a bee

Over the last few weeks we've had a few houseguests, with more to come. My mother was here for the week including Halloween. Over the last weekend, Ann's aunt and uncle, Monica and Bill Harwood, brought Ann's grandmother, Grandma Banky, who stayed with us over Saturday night. There was a rather fierce storm in the Bay Area with 70 mph winds that took out power at our house for 24 hours. We were concerned that it might not be back on in time, but everything worked out. We had a great lunch with all of them on Saturday, and on Sunday took Grandma Banky to church, and then toured the sights of San Francisco.

Over the next few weeks we'll have Susan Simon (one of Ann's step-mothers) with Ginge Anderson and her husband Andy for a long weekend, then two weeks later off to Delaware for Thanksgiving where we'll not only see most of my extended family, but also Carl. Our college friends Karen Schiff and Ellen McCallum are planning on coming out in early December before Christmas, as they're both on an academic schedule where they get a break then. I haven't heard from Ann yet about the Christmas plans, but we're going to have to get on that ball.

Ann's energy level, and stress level, have been mixed over the last month. Some days are much better than others. Still no symptoms, but the amount of energy she's got has been all over the map. Some days are two-nap days, all the way to no-nap. Ann's made great progress in getting on with her life. She attended a training course for literacy volunteering in the schools, and got matched with a teacher in the school down the street from where we live now. She's making progress on her dissertation again, as she sees that as a good way to move forward into child psychology. The days with little energy frustrate her greatly, as she wants to use life to do things.

Unfortunately, the medical news is mixed right now. We had another scan Thursday before last -- on Halloween. Our appointment with Dr Prados was next Tuesday, which was quite a bit of time to wait. It's extremely stressful, waiting those days without knowing. We dropped in to see our radiation doctor, Dr Larson, who no longer treats us but is kind enough to show us scans. His initial interpretation of the data was that the scan was improved, and quite positive.

Of course, we're worried about re-growth. Although the radiation treatment was remarkably effective, it didn't get 100% of the tumor. The sections that remain are small, but we need them to stay dormant, and to keep shrinking through chemotherapy.

I picked up a copy of the scan from the UCSF film library, and as I looked at the scan, I became concerned. It seemed that some enhancing areas might be considered bigger, although I trust Dr Larson's expertise over my own. I emailed Dr Larson, and he said that he had just got the official report from the radiologists. The radiologists were concerned about the area of initial tumor growth might be a little worse. It's a tough thing to interpret, though. There are a few reasons why the area could seem worse which are not regrowth. We were a bit of a wreck for a few days until we saw Dr Prados. He spent a lot of time with us, was comforting, and very informative. He explained how the past radiation treatment might cause this kind of scan, and also explained how we have a number of treatment options if it turns out that the current treatment path (Temodar plus OSI-779) is not effective enough. We also asked for an interim scan at 4 weeks, which might tell us more, or might be equally inconclusive.

The other medical issue is Ann's continued low blood numbers. Through this cycle of Temodar, Ann again had problems with her white blood counts, and this time also had problems with her platelet counts. It's seeming far more possible that Ann has an unusual sensitivity to Temodar, which effects only about 4% of people treated. Over the last few weeks, the problems have been both white blood counts, and recently platelet counts. The platelet count dip was very surprising, as we hadn't had any problems in that area. Dr Prados was very strongly of the opinion that this was not an effect of the OSI drug. Today is the crucial blood test where we find out whether her bone marrow was able to recover, and find out if Ann can continue with Temodar therapy. If she can, we'll do it at a reduced level, and see if that helps. We want to make sure Ann's natural immune system is strong.

One bright spot was that the platelet count numbers recovered dramatically during the few days between the scan and our appointment with Dr Prados. They increased about 3-fold in just a few days.

We asked Dr Prados about our next options if either the Temodar/OSI therapy is not effective, or not well tolerated. He said that the paths we'd be looking at are still drug based, and he had two trials which he thought might be appropriate. We also plan to open a discussion with him about the drugs that can be used to boost immune system response, although he prefers not to use them. My theory is starting to be that there are enough novel treatments around that one of the important strategies is not to get too attached to a single therapy. Ann's tumor might respond  to one of the new drugs, but not another, so we need to try as many as possible.

Although this news has been hard to hear, we're not at the point yet where we know there has been regrowth, and we're not at the point where we have to stop Temodar. We're likely to have to make more treatment decisions either this week after the blood test, or right after thanksgiving, when we'll be having our next scan.

As I've gone through this, I've started collecting more and more cancer stories, from the sister of Tim Carless (trombonist of Rosin Coven) recently diagnosed with serious breast cancer, to a friend of my office mate, diagnosed with Leukemia. We had already known about Ann's father's and my grandfather's successful battles. The sheer quantity of the stories is staggering. Some stories have good outcomes, some bad, some are still unwinding. There's no such thing as a typical cancer story, because each type has a different cure rate, and each person is an individual. It can be a silent disease, with a person going for the treatments every day, going into remission, and being fine for the rest of their life, or rallying their friends and community to fight the disease.

Right now, cancer appears as a disease of probability. The root causes and mechanisms are poorly understood. Our tools for examining DNA and mutations are coarse, so what we see looks like the hand of fate or God. The science of understanding DNA and cellular processes is increasing every year, and one can easily imagine a time when the individual mutations of the patient and cancer can be analyzed, and the appropriate treatment can be selected. It's the extraordinary power of modern computers that make this progress possible, but I've been seeing a different vision. The picture in my mind is of Odysseus in a boat with a small lamp at the helm, calling forth all of his strength and wit, praying to the heavens, and not knowing if the afternoon will bring capture at the hands of a giant squid, or sight of a land of plenty. With the modern world's reliable power sources, vast communication system, and exquisite knowledge, cancer places us back into an astonishing and frightening world.

That's all the news from here. We wish you are well.

infinite love,
-brianb

PS. There's a group at Stanford working on Protien Folding. By donating spare CPU cycles, you can help fundamental research into cellular processes. Visit http://folding.stanford.edu/ . The Google Toolbar for IE now supports this effort, as well, if you have that installed.

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brian@bulkowski.org  -- www.bulkowski.org