4/29/2002
Subject: status of the day
From: Brian Bulkowski
To: Ann cancer list

Dear friends,

This, again, is going to be rather terse. It's been an action packed day.

Ann's status today is "no news" -- biopsy results tomorrow for sure.

[Again, I think I'm not sending this to some people. I've updated the list, but suspect I still am missing a few people.]

The long version is that Ann's out of the hospital. She left on Sunday around noon, fully under her own power. She recovered from the biopsy very quickly, and is in full command of herself. She stayed an extra day that she probably didn't even need to, and is glad to be home. That afternoon we spent in Oakland Chinatown having dim sum, and spending some quiet time at home in the afternoon. In the evening we gathered together a host of Ann's friends at Cafe de la Paz in Berkeley, and had a modest feast, to bring together the healing.

Today has mostly been waiting and calling around for news. In search of the biopsy results, I called around, and found that the pathology lab claimed to have not received the samples. We went down there personally and found out the real situation. "Ann Simon" had not had a biopsy at 6:00pm, it was "Ann Singh", probably married to that nice indian fellow. This kind of error happens all the time, and it's important to catch it, but as there was only one brain biopsy done that day, we're sure we've got the right samples tested. This gave us an opportunity to talk to the pathologists, however, so it was rather nice.

From the path guys, we found out that they're certain to finish their testing tonight, and have consultations tomorrow morning, and be ready to talk tomorrow around lunchtime. We're a little unclear exactly which doctors (between the Alta-bates attending neurologists, the neurosurgeon, the radiologists, the oncologist) will be there, but we'll hear their theories and know a lot more.

Focus is still centering on non-immunocompromised primary CNS lymphoma. Toxoplasmosis may still be an outside chance. They're doing an "extra set of stains" tonight to be more certain. This diagnosis is unusual, but not unreasonable. Usually CNS lymphoma patients are immunocompromised, that is, have AIDS. There is no indication of that with ann. The good news is that there is no sign of the other lymphomas, which start in the body and can move to the head, or of nastier things like sarcoma. Preliminary tests show it as malignant, which pretty much means that we'll just have to keep watching it and treating it if it comes back. Diagnostic procedures (like MRI) have become amazing in recent years, so long term treatment is less scary. The general lymphoma type is thought currently to be 'glial', and that roughly means on the surface of the brain.

Toxoplasmosis is a parasite that lives in cats, and develops tumors in the brain in humans, in rare cases. Usually the immune system keeps it under control. It's treated by antibiotics. It's currently an outside chance, as the original CT scan would have looked a little different.

Lymphoma is fairly treatable in general, and we'll start getting opinions on exact treatment paths. Our general move at this point is to hear the results from the alta-bates oncology group, and then get the slides/samples/images moved over to UCSF to allow them to begin an analysis. That group is considered one of the best, and thus gets a broad range of different unusual cases. They also have tools that no other groups have, such as the "gamma knife". This tool gave a friend of ours a clean bill of health from a possibly similar malignant tumor. I understand that there are combined treatment paths, such as partial removal and then focused treatment.

Again, I can't begin to express my great thanks to everyone who has helped over the last week. Our focus has been good, and although we've been riding a roller coaster that has included fear and anger, we haven't given up. We continue to need thoughts of strength and light, and any technical information that might be available. Ann and I will fight this, and continue fighting. We wish you all the best in your endeavors.

That's all for now. The troops are chomping at the bit to get a bite to eat, which we need after a taxing day.

much love,
-brianb