stumbling forward

No big news. Watching what is almost certainly the last game of the 2008 World Series which is happening in the chilly drizzle 15 miles south of this cozy spot on the sofa in front of the TV. What's with the towels?

I saw Dr. Lustig last week, my radiologist here in Philly. He was unsurprised to hear that no one so far thought that more radiation was a good idea for me. He seemed ambivalent about the possibility of proton beam radiation and pessimistic about actually being able to schedule treatment at Massachusetts General.

We all agreed that it's been too long and it's time to do something. Lustig recommended starting Temodar as soon as possible, after a baseline MRI. His office scheduled the MRI for me, this Thursday, October 30.

On the weekend, Michelle and I discussed this path some more. I'm still persuaded by Dr. Fine's reasnoning that the PC combination may be more effective for me and I'm interested in trying something new, but I'm not confident about the choice. This week, Michelle is in a week-long Butoh workshop so most of the phone calling is on me this week. I scheduled an appointment with my neurologist at HUP for Monday and I'm trying to find out from NIH if I can get Dr. Fine to prescribe the chemotherapy or at least advise me. In this uncoordinated way, we progress.

a little news

When I was a member of the metal shop at Cell Space in San Francisco, I learned an important technique for locating tools from a shop veteran named Tom. After stomping around and cursing for several minutes, Tom would shout "Who stole my f*ing hammer?" Immediately afterwards, the tool in question would appear on his shop table, peeking out from under some neglected gloves, as if frightened into revealing itself.

I felt the some of the same sort of satisfaction that Tom experienced at howling his tools into revealing themselves when, the day after my last post I got a message from Michelle that Colleen from NOB had called. The message was that I couldn't receive any more radiation. I actually felt relieved, although it narrowed my options, that a decision had been made.

But my relief was premature. I received a voice mail message from Colleen the next day saying that they were sending my radiation treatment details to Dr. Loeffler in Boston. After more phone tag, it turns out that I've only been ruled out for 'standard' radiation ( meaning, I guess, IMRT like last time ) and proton beam therapy may still be possible. So - good news? More waiting? Massive campaign to call Dr. Loeffler and accuse him of stealing my hammer?

slow progress

Over two months after surgery, we're still crawling along, trying to get a treatment plan together. It's hard to pinpoint where the breakdown is, but it seems that for three full weeks after our visit to NIH, there was absolutely no communication between NIH's Dr. Camphausen (who was asked to review my treatment by Dr. Fine) and HUP's Dr. Lustig (my radio-oncologist here). Through repeated calls by Michelle and myself, the ball is rolling, but the process is almost opaque to us, so it's hard to say where we are.

The last update, last Monday, was that Dr. Lustig's assistant, Carmella, was getting the relevant treatment info to Colleen Livingstone, the nurse at the Neuro-Oncology Branch (NOB) of the National Cancer Institute (NCI) at the National Institutes of Health (NIH). Whether that information has gotten to Dr. Camphausen and whether he has reviewed it is the question of the week.

I don't want to complain unreasonably, but this is ridiculous. I understand that that, at the NIH, they are serving a huge population and doing tremendous public good and I'm sure they're staff is strectched beyond capacity. But, trying to manage their work in addition to our own lives, one of which, at least, is at stake in the matter, is really too much. A little insight I can't help but having each time I'm asked to hold, again, when trying to follow up on the plan for treatment for my recurrent cancer is that, of the two sides of the phone line, I'm not the one getting paid for my time.