Sunday, March 15, 2009

I was hoping to be writing at this time from a cozy room at the Transplant Inn, by now riding out the chemo and transplant aftershocks, and by around April back among the useful. But as Ray Kroc used to say, "Don't count your chickens before they're McNuggets."

Yes, I'm still waiting to check in, and getting a bit jumpy despite feeling like a million pesos. For three weeks running, my red blood-cell count is as high as it's been since I've been taking notice. (When low, it's a key indicator of disease progression.) For men, 14 to 18 is normal; mine was just over 5 when I was first diagnosed a year and a half ago and ever since had been meandering back and forth between 8 and 12. So I've been nearly euphoric over my recent scores of 13.8, 13.9, and 13.8. I continue to pine for my return to the norm. (Oh, to be 14 again.) So why the jumpy? Whereas the blood count is up, the latest PET CT scan two weeks ago was a downer: the boat appears slightly more active and slowly growing. The doctor evaluating the scans commented that a transplant now wouldn't do any good, but that that's just his opinion and that I'd surely be discussing it with my transplant doc when the final results / analysis were in after the weekend. And he asked was I and experiencing shortness of breath with physical exertion or extreme sweating at night (again, indicators of disease progression). Well now, the only thing I'm short on is patience. And I hadn't been and still am not sweating nights. Only sweating I did that weekend was figurative. (I'm discovering that some doctors take the "give it to me straight, doc" credo a tad too seriously, reveling in off-the-cuff doomsday diagnoses. "Doozy of a paper cut, Ms Jones. Could be fatal, potentially. But in a few days we'll know for sure. In the meantime, you go on home and ponder your impending demise.") But on Monday, my transplant doc said the scan doc's got no idea of when or not a transplant can proceed, and what was the doc's name anyway 'cuz he wanted to have a word with him about his renegade opinions.

In any case, with the boat growth, Led Zevalin is officially on the playlist, starting as soon as they can guarantee when a room will be available. The therapy I can do as an outpatient -- but not the transplant, of course. Thing is, it all has to be tightly choreographed. First, my old friend Rituximab (on Day -10); then, one week later, the Zev (Day -3); then, 3 days later, the transplant (Day 0). So the room is key so that they can plan backwards when the therapy can begin.

It's enormously frustrating to sit idly (mentally, I'm actively wishing 'em away to the cornfield) as the boat grows, but doc ensures me that the bed is just a matter of days or weeks and that the boat size is no cause for panic and is still cap-sizable.

The general shortness of beds, I've learned, is exacerbated by an older gent who's single-handedly squatting in a 2-bed room. (You'd think the shortness of his bed would make for a rather uncomfy stay and he'd wanna leave.) Transplant is months behind him, and medically, all's hunky-dorey. But he and his overly social insurance company insist that he sit out his rehab time in hospital and not at one of Germany's many rehab getaways. On the bright side, I hear I've been bumped up the waiting list as a few patients in waiting have been referred to other clinics. I asked what about my also transferring to Heidelberg, or Hamburg, or heck, even an iceberg if it's got a clinic. But there I'd also get put in a holding pattern. (The "other line always moves faster" rule probably applies equally to hospitals as it does to supermarkets.) More importantly, there's no guarantee that docs elsewhere would agree to perform my tailored treatment plan. Others would likely stampede me toward a donor transplant, which, in my own humble medical opinion, is not the right option for me now.

And so I wait it out, going in once a week for checkups and calling the doc every couple days for an update on the bed situation. So as you send your good thoughts for my health, you might also send a prayer for a strategically placed stinkbomb, wooly spider or similar spook to coax the squatter out through my in-door.