6/17/2002
Subject: AVS Status - Still Remarkable!
From: Brian Bulkowski
To: Ann Cancer list

Hi Folks,

It's been about 3 weeks since the last update. A long time -- too long!. Then, we had our first great scan result after about 2 weeks of the radiation and chemo therapies. Since then, we've had a bit of breathing room, and have enjoyed the presence of a few houseguests, so I've been lax in writing.

The good medical news has continued. We had another scan (our fourth!) thursday before last (6/6), which showed a continued reduction of the tumors. The main tumor area still shows up on the scan, but is vastly reduced! There is still a lot of tumor showing up, but it's partially the microtumor areas, which are probably not fast growing. Our radiation oncologist, Dr. Larson, continues to be an incredible source of inspiration and strength. Early this week he's moved from whole-brain treatment to a focused treatment, or boost, of the effective areas. This is to reduce the side effects of whole brain radiation to a minimum level. There are 4 fundamental areas showing up on the MRI, and the boost is targeting those 4 while leaving the rest of the brain as untouched as possible.

This boost treatment involves quite a bit of complexity on the part of the radiation technicians. The recent week has involved 4 different angles of treatment, and the creation of a physical block - a physical mold made out of lead in the shape they wish to treat. Our first treatment with that plan took nearly 2 hours. During the first treatment, they place the blocks, enter the fields and angles, then take a film (X-ray, really) showing exactly what the treatment would do, and should show the tumor areas getting hit in the way the doctors want. They would take a film, but then realize that something about the set-up wasn't quite right, and find the right doctors to fix it. During this period, Ann was bolted to the treatment table by her mask and told not to move - for two hours. Afterwards, Ann said she was "losing it" because of back cramps, but weathered the experience well, all things considered.

Through the end of this week, we had some annoyances in that treatment. The treatment machine (linear accelerator) broke down on Thursday, so we couldn't go in. In some sense, that was a blessing that let us clear out quite a bit of background work, like getting to work on writing this letter. I suspect it means that we'll go one day later through the treatment. As they've all predicted, Ann's starting to get tired from the radiation. I can see the difference in the exact sort of tired, and she described it today as her mind still rattling along, not weary, but an odd feeling inside her head that makes her want to sleep. This has cropped up only in the last few days.

Today, one of the techs said "We hate this machine. It's old and we want to get rid of it." I told him that's not exactly what I wanted to hear, in a kidding voice. It does seem that often the computer controlling the machine crashes, and the reboot cycle is 12 minutes. I think the next lab over has a more modern machine. Back when we were doing whole-brain, using the old machine seemed more reasonable. I did notice today that there are a lot more masks like Ann's in the mask rack. When we started treatment, Ann was one of 3, now Ann is one of eight. I don't know if they're all under treatment for tumors, or what, but I recognize now what each of those masks represents.

Our next medical phase is going to be intense. When the radiation is over, our options will primarily be various chemo drugs, unless we get to a point where surgery is reasonable. UCSF has several new drugs on trial, most notably ZD-1839 (Iressa), which blocks Epidermal Growth Factor Receptors (EGRF). This is currently in Phase II trial only for Glioblastoma, and has proved effective on other cancer types. Dr Prados seems to have a low opinion of most of the other treatments (thalidomide and the other anti-angeogenic agents; Celebrex and the COX-2 inhibitors, the copper treatments), but we need to engage him and find out more about why he doesn't like them, and whether they might fit our treatment path, now that we know how *exceptional* Ann is.

Dr. Larson is pointing out that the awesome initial response we've had puts us off any prior statistical map. He continues to say that he's never - that's never, out of a lot of years of teaching - seen a response like Ann's. He believes that we should put some thought and creativity into the chemo regime, since we're in the land of unusually good responses, and not do something normal. The goal over the next week is to get Dr. Prados thinking hard about this response, and come up with some great ideas. Talking to Dr Larson today, he says he talks often to Dr Prados, and has talked to her often about Ann, as she's their most interesting case.

At some point one hopes it becomes interesting to start thinking about surgery again, but I suspect we'll hear the same thing we did before. Surgery only makes sense when there's a mass to go after, not a bunch of tumor spread over a lot of areas.

The web page about Ann is still a mess. No pictures of Hawaii, no comparisons of the 4 scans. Soon! Soon!

On a personal front, the last week has been hard. After talking to a few people, I think it's because we're getting toward the end of the most obvious treatment regime, and the next decisions could be more complicated. Dr Larson has, in some ways, an easier job, as the effects of radiation are fairly well known, and it's the only tool he uses (modifications, like beam radiation vs. Gamma Knife, but still all radiation based). Dr Prados has an entire stable of drugs available, and those can be used in combination or serially, and quite few are new with much less data available. Because of this, we'll have to engage more deeply, and express to Dr Prados more clearly where we stand on the issues of risks, and the unknown.

That's scary. In our last meeting with Dr Prados, he spent quite a bit of time talking about philosophies of treatment. What he said are things I understand and agree with, now that I've had a chance to think about them. He said that a treatment is effective and meaningful when it has a good clinical outcome, not when the patient is harmed. Many of the old chemo drugs were judged as effective when the patient was harmed, and one would treat until the patient could take no more, instead of treating to maximize clinical effect. Somewhat of a "medicine must taste bad" effect. When others talk about "aggressive" treatment, Dr Prados gets a little nervous. He says we should think about being aggressive to the tumor, not aggressive to the patient - and he's right.

Relatedly, I'm realizing that we have a huge support system, but Ann doesn't have a personal doctor that can be more available and answer questions on more of an as-needed basis. We have all kinds of questions that crop up nearly every day, since we're scared and concerned and thinking. We need to tap into our network of friends a bit better, but also need a doctor on our treatment team who can be available a little more regularly. It's unclear how to do that, because Dr Prados is very good, both from an intellectual / technical standpoint, and - from what we can tell so far - as a clinical doctor. We're hoping that we can grab a bit more of his time and interest by better communication, and by the fact that we've had an unusually great response to the initial treatment.

In non-medical news, all sorts of good things are happening. We've settled into our new house at 1065 Cragmont in Berkeley. Everyone who visits loves the place. The architecture is a general California Bungalow, with a big open space in the front. That central room gives it an open feel, and the back yard is killer for gatherings and BBQ. We've unpacked to the point of having only about 10-20 boxes left with rather questionable contents; stuff that will require toss-or-store decisions, and then a trip to the Berkeley Dump or a trip to Ikea for more storage systems. It's hard to describe how nice the house feels, and how it's lifting our mood every morning when we look out on the trees.

This past week had quite a bit of siblings in it. Ann's brother Dave, his wife Heather, and their 3 month old child Anna were here for almost a whole week. Traveling with a 3 month old isn't a piece of cake. There's many times when you're just at the mercy of the kid's schedule, which was fine with us. They managed it, and it did Ann and me good to see them. Anna is cute, wonderful, and thriving. She loved the trees around our house, and loved to be walked under the trees. She would coo at them, which Heather called "singing to the trees" with wide eyes and an open excited mouth. Ann says Anna has expressive hands, gesturing and pointing. Anna often got so exhausted she couldn't sleep. So many people to see and play with! Dave and Heather got a chance to go to Chez Pannise downstairs on their wedding anniversary, courtesy some babysitting by Ann and our friend Ruth Wynkoop. Dave and Heather were forceful about being helpful and productive. They assembled several Ikea pieces, hauled boxes from the garage, and bought us a needed hat-rack - among many other things!

On Sunday (6/9) we had a small BBQ in the back yard with D&H&Anna, and also invited Mike and Ann, Holly and Alyssa, and also my sister Julie and her friend Heather. The next day Julie had an interview for a teaching job in San Jose, and was both offered and accepted a job at Quimby Oaks Middle School. She's only got a few weeks left at her current school, then a summer with no certain plans yet. It's seems she's saved her nickels and dimes through the year, and the school included room and board which made living cheap. I have no idea what she'll come up with for the summer. A car trip to Mexico? Hanging out and reading/writing? We'll see!

Our friend Ellen McCallum from college visited early last week (6/3 to 6/9). Me and Ellen, and Ellen and Ann, were all especially close during college, although not so much me and Ann. Ellen was great, just like having the old gang back together again. She did quite a bit of chauffeuring, buying, cooking, and generally helping out. We didn't do quite as much of the usual carousing and restauranting, as Ann's diet gives us less latitude.

Finally, I'm finishing this note from Southwest 1412, a 737 somewhere 250 miles east of Oakland airport. This weekend, for a variety of reasons, we took off to Chicago. A big chunk of the Simon family is there, notably Denis Simon and family, and Ann's grandfather Paul. Carl and Bobbi came in from Ann Arbor. It was father's day, and Denis' daughter Cheryl - Ann's goddaughter - has just graduated from high school, and we haven't seen any of that branch of the family since all this began. It seemed a little easier to bring Ann and I out there, then to take all of them to California. The weekend weather was cool and green, the kind of days after a rainstorm that make the Chicago suburbs into an idyllic scene of grand elms, lush lawns, and easy living. Denis and family threw a large BBQ on Saturday, and we hung out with a bit of his wife Kathy's family, including a rousing croquet game. Kathy works within the health profession, and I had a few chats with her about Ann's situation. I hadn't realized exactly what she does, and now that I know, we plan to be tapping into her as a resource more fully.

A great frustration has been wondering where the time goes. At this point - as is true for everyone, every day - time is precious. We can't be trapped in an endless cycle of doctor's visits, phone calls, medicine runs, worrying, and every other thing that takes up each day. We need to continue being creative, active, and forward in our world. Ann's working through a decent list of what she plans to accomplish over the next few months and year, including publishing her current academic work, two other possible book projects, and starting work in the field of child psychology. How can we do that when we've got all these appointments and concerns?

As I've done in each of these missives, I want to thank everyone for all the different kinds of support. From packages to hugs to quick phone calls - it makes each day more bearable. Sometimes we just break down with the fear of it all, and need to remember the reasons we're fighting this fight. It's hard to see a silly thing like a Lego Pen Writing System making a difference, but it does.

We're looking forward to seeing more of you (especially those of you on the academic calendar!) over the summer. Hang tight and we'll figure out how to do it!

Cheers,
-brianb