5/2/2002
Subject: Ann Update - moving forward
From: Brian Bulkowski
To: Ann cancer list

Hi Folks,

This is the third update on Ann's tumor condition. We've had quite a bit of bad news in the last few days, and have worked to absorb it and move forward in the best way.

AGAIN, FORWARD TO ANYONE I MISSED.

A few hours after my last update, we got the final Pathology report from Alta-Bates. They had internally sent it around and gotten a few opinions, but the final diagnosis was glioblastoma multiformae (GBM), which is a class 4 tumor (worst kind). This is very bad news.

The best short, summary resource I've found [thanks to Tim Carless] is the following:
http://home.earthlink.net/~sdepesa/gbmguide.htm

The neurosurgeon displayed little helpfulness, and I'd love someone to fix this situation -- surgeons should not give news like this to people. Oncologists are much better suited. The surgeon, who did a great job on the biopsy, was rather downbeat about Ann's chances, but after doing a bit of research, I think it's not as bad as all that. First of all, glioblastoma is somewhat rare in Ann's age range. All the survivors are in her general age range and were in high health at time of diagnosis. Second, the path report was somewhat equivocal about class 3 vs class 4. Third, the MRI is somewhat uncertain about the other two parts of the tumor. They're showing swelling and a lot of blood, but it's unclear if that's an effect of the tumor, or and effect of the high pressure caused by the main body of the tumor. Swelling is much greater in healthy, young people.

The oncologist at Alta-Bates (Dr Cassedy) told me to "get over to UCSF *now*", and warned me a few hours before we got this final path report. We moved forward with that immediately, and got in with Dr Prados, who is the head of the neuro-oncology group. With all the independent validation we've got, such as from Wendy Fosse, aunt of Holly Webb's who works at Boston Children's, and a woman that Ann worked with at Stanford, Prados is one of the best in the country. Stanford recommending UCSF is a strong statement. UCSF is hosting a good number of the clinical trials for glioblastoma. Somewhat unfortunately, we have to wait until Wednesday (9am), because he's in Taiwan doing a conference. Carl hand carried all of Ann's records, biopsy slides, and everything else to their offices this morning (to avoid that "Ann Singh" problem), so they can start analysis sooner. According to Wendy, "you're lucky to have got in with him". UCSF is strong in many areas, including neurosurgery and pathology, as well.

We're still looking into other treatment centers, and have heard highly of University of Oregon, UCLA, Duke, and Slone-Kettering. However, at this point we're also concerned with staying within our AWESOME support group, and have heard over and over how critical that is. We'll continue researching over this weekend, and will do quick calls with all those centers and see what they can add to the mix.

The first line of defense is radiation therapy. We spoke to a radio therapist at Alta Bates yesterday, who studied under Dr. Prados, and she took us through some of the issues and concerns. The inflamed areas cover two different parts of the brain, and the main body's in another area, so it's likely the radio therapy would cover a large area. The brain can take fairly high doses of radiation, and she (Dr Champion) was insistent about going after a cure, and covering every bit that might be effected. This is exactly what Ann wants. We might end up doing the actual treatment there, as it's closer to where we hope to be living, but only under Dr. Prados' direction.

There are other options in this phase, such as additional biological agents to help the radiotherapy, like Thalidomide (yes, that bad word from the 60's). Operating on the main body (what they call a "resect") doesn't seem out of the question, but with this kind of tumor you have to look at the whole brain, and plan for the tumor coming back. So we expect Dr. Prados to help us with this decision.

We're moving forward on an emotional level as well. Yesterday was bad. Ann was deeply in shock. Besides the hard diagnosis, our issues with the medical institutions frustrate us. I'm aware that we could have gotten over to UCSF sooner (eliminating this delay), although now that we have a serious diagnosis we're correctly connected to Dr. Prados. The way that hospitals remove a patient's sense of control angers us. They say "you're in control, we work for you", at the same time as they make appointments for you and tell you there's one diagnosis and one path forward. Still, we've uniformly found people with great skills, and some of those have gone out of their way to form a connection and help. Finally, it's hard to forget that we could have got this diagnoses 3 months earlier by insisting on a CAT scan. There's a lesson there. When someone who is healthy has real symptoms, and you can't find a reason, look deeper - find people to look deeper. The natural response is to say she's healthy, and spend your time elsewhere, but a CAT scan takes almost no time (15 minutes), and they have sophisticated means of analyzing them, such as a single regional doctor (one for the whole bay area!) who gets the images electronically/instantly, looks quickly and gives an expert first-stage diagnosis.

But you've got to move forward, and I'm not going to mention those issues again. We've been talking to Dr. Gurnick, Ann's therapist, who has recommended a good bio-feedback person, and Ann's former employer, the Dudecks, who have pulled together a lot of information, especially about Transcendental Meditation. Ann has spent the morning and afternoon with a meditation group in Marin (apparently, that's where they all are) because she's having trouble getting to a good state herself. There's a funny balance between being fighting mad, and being too afraid & mad to fight. Many of the survivor's stories include herbal (Chinese and Ayervedic) paths to sooth the mind, and we're getting connected with those folks.

We've been staying in touch with friends as we move forward with this time. We appreciate all the phone calls (sometimes, I wonder what my cell phone bill will be, then laugh -- there's no way it could matter), all the advice on so many levels. On tuesday, after we got the final bad news and path report, we went over to be with Rosin Coven, and spent time holding, crying, talking, making music to drive away the bad things. Wednesday was a little quieter, with only one doctor's appointment, and had a quite meal in a local restaurant, and played Taboo with Wendy and Carl [Bulkowski team won, although it was also clear that the tumor hasn't effected Ann's skill with words].

On a housing front, this diagnosis has us raising our sights a little for a great place for Ann to gather her strength and fight. We saw a few houses yesterday, one of which looked promising. Rental houses are somewhat dingey as a lot, so we might enlist some assistance in decoration (which is, kindly put, not Ann or my strong point). We want extra room for people who might come and visit over the coming months.

So we've got a few days of waiting at this point, of taking a breath and finding resources. Your calls are always welcome, although it might take a day or two to give a response. We still need a huge amount of strength, thinking, praying, to make the best choices. We feel the fact that you're thinking well about us, and spend time every day feeling that connection, and allowing it to refuel us in this battle. We look forward to helping you all in the future.

No matter what happens, you've all played an important role in our time of need, and we all have much to be proud of.

infinite love,
-brianb