Tuesday, January 20, 2009

Quick update

Not too much of substance here but I'm overdue for a brief update.

I'm working out my long list of questions for BB, which should inform my final "decision tree" on what I'm going to have done and where. I was copied on a note from SF to SH talking about my situation, how treatment is needed relatively quickly, and how we've discussed BB's protocol as well as a more traditional protocol without the PACE drugs. It wasn't alarmist, but the implication was clear: the PACE protocol is extremely aggressive and has a host of terrible side effects. I believe both doctors will ultimately support whatever I want to do, but I think they know that PACE is awful and would probably be happier if I went with the more standard treatment.

I spoke with a few more senior people at work to let them know, and today I go in for my last day in a long while to tell the people that work for me (I've told a few of the more senior ones but most of them don't know). In addition to the Disney Channel exec I wrote about last time, another senior person I spoke with knows SF well (his wife went through a transplant for leukemia a few years ago) and had wonderful things to say about him. I have a lot of confidence in him, and yet I'm still torn between doing this here versus at BB's shop. This is one of the things I have to bottom out.

I have my consult with BD tomorrow, and I'll ask him again about secondary marrow impacts of the PACE drugs and the tandem transplant protocol in general. Then my research will be done, unless I can get a phone consult with SJ, who I was scheduled to see on Feb 23rd, but that's too long to wait, I think.

I've been feeling pretty good but the ribs are very sore these days. Some days I need no pain medication, most days I can get by on one or two advil, but lately it's been at least four advil and there have been a couple of Vicodin days. I find, also, that as the day of treatment draws closer, dread is starting to set in. The full BB protocol has four courses of VTD-PACE plus the two transplants. That means six multi-day periods of intense nausea, six periods of neutropenia, etc. I try not to lose out to fear, but it is difficult...and as it gets closer, I'll wrestle with it more intensely.

Meanwhile, I'm taking six capsules of liver.52 herbal formula per day and 8 capsules of milk thistle, and I'm off Lipitor for more than a week now. I'll be interested to see the liver enzyme numbers from my upcoming tests if nothing else.

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