staple gun

I am sitting in a hotel room across from the Indiana University Medical Center, waiting for the Ambien to kick in, so it's gonna be brief entry, and may get a litte loopy near the end. The past few days have been a maelstrom of taxis, airports, jets, airports, taxis, hotels, paperwork, and hospitals. Sounds miserable, I know, and a lot of it has not been fun, but some of it has: I blitzed midtown manhattan one night with an old friend, and I did make it, by the skin of my teeth, to my best friend from high school's beautiful wedding in San Francisco, and had a romp across the dance floor and through a very very late night, celebrating LIFE (selected pictures to follow, once I get my camera hooked up here). After one day in Palo Alto, mostly spent apologizing to visiting friends for being less than awake due to the two previous night's festivities, we jetted off to Indiana (of all places!) to continue our marathon quest to leave no stone unturned, and get as many expert opinions as possible in one week.

In brief, the Sloan Kettering people said that I need high dose chemotherapy with stem cell transplant. For a few weeks, they would be giving taxol and ifosfamide while taking blood very frequently to harvest and store the stem cells that float around in our blood, and which can, when re-implanted, reconstitute the hematopoietic (blood-producing) tissue necessary to boost my red cell, white cell, and platelet counts, which will fall dramatically low after the huge doses of carboplatin and etoposide are given. Depending on how well I tolerate the treatment, it either keeps getting worse, or doesn't. Horribly enough, if I respond without too much difficulty, then they give me more to smash it that much harder. I don't think that there is any reason that we wouldn't do the treatment in New York if we lived there. And despite the fact that I LOVE New York City, the incredible rift it would cause my family, the distance from all of my support system except for my mother, the fact that New York City is no place to be immuno-compromised (no subway, no taxis, no bars, no pizza, no museums, no drugs...), plus the enormous expense of relocating for a minimum of six months (and possibly much longer than that, depending on what side of the 50-50 split I'm in), means that I don't think that it is likely to happen there. But their science is the gold standard in these circles, and they have set the bar high. We are also putting together a bit more piecemeal all of our questions and concerns about USC/Norris, City of Hope National Medical Center, UCSF, Indiana, and Stanford, and bouncing all of the minutia around, hoping to come out with a reasoned idea of what to do next. We meet with Einhorn in Indiana tomorrow, and then fly home on Wednesday, and will hopefully be meeting with Srinivas at Stanford that afternoon as soon as the plane lands. How many of these have they done? How many stem cell transplants? How many high-dose chemo regimens? How many of each have been for germ cell tumors? Will the doctor be out of town? Moving hospitals? Who is the backup doctor? How long has that doctor been involved? Which high-dose regimen would they be using? Why that one, and not this one? What is the evidence for us doing this versus that? What could the side effects be? And? Yeah, OK. What else? ugh. And what if that doesn't work? How will you know if it has or hasn't worked? What have you got for us then? And why should we do it that way and not this other way?

Sometimes it is appropriate to go one step at a time, and cross bridges when they need to be crossed, but sometimes that's just baloney. Sometimes, in order to make a good decision NOW, you have to have a long-term vision of where things could go, because inevitably decisions made now will affect the future drastically. I know that there are a lot of squirrily, slippity variables to nail down, so where is the staple gun? And don't tell me you left it at home, because I will fly back across the country to get it. Twice, if need be.