Tuesday, May 16, 2006

Mystery man

he bottom like is: more tests needed. We saw Dr. Giles this morning at M.D. Anderson, and the first thing he said was, “I need a diagnosis”—it’s still not entirely clear what’s going on with me, though it’s also clear that something is going on. I had blood work done yesterday, 9 tubes’ worth: my blood counts are “perfectly normal,” as are liver and kidney functions, etc. I had another bone marrow biopsy done yesterday (the previous one was also done here at M.D. Anderson, on March 7): the very preliminary results are good here, too, but they’re doing advanced cytogenetic stidues as quickly as they can, tring to find any luking leukemia cells (I think he said they can detect 1 cell among 100,000 normal cells), then trying to get at the exact genetric makeup of any cells they do fine. It will take about a week to get all the results back, though he said they’re trying to speed things up as much as they can (How you do that?). So he doesn’t know yet what the spots are that showed up on the MRI brain cscan last Wednesday. He’s operating on the hypthesis that it’s leukemia, and has ordered more tests. I’m scheduled for another MRI of the brain tonight, and this time they’ll do the spine as well. Tomorrow I’ll have a lumbar puncture, otherwise known as a spinal tab, to collect samples of cerebrospihal fluid that can be searched for leukemia cells. (There probably aren’t many, but there may be a few.) I’ll also have a consultation with people in the radiology department to begin planning a possible course of radiation treatment—at the moment this seems the most likely option. There will probably also be systemic chemotherapy delivered intravenously, like what I was given at St. David’s last June; this would happen after the radiation therapy is finished, to “avoid any interactings” between them—probably both for my sake and to make it easier for the medical team to track what’s happening. Then will come the bone marrow transplant…

It all sounds hideous and no doubt will be heideous at least some of the time. But I’m deeply relieved, too, first because Dr. Giles didn’t tell us there was nothing he could do and second because it looks like both the radiation and the chemotherapy might be done on an outparient basis! Also, Dr. Giles says that I’m “young and fit” (!), which affords him the “luxury” of time to search for more clearcut answers before embarking on a course of action. He seems to want to act quickly, but my condition isn’t nearly as dire as it was last June (Dr. Tucker said something like this, too).

We’ll have to come to the clinic every day, probably, but at least we won’t be confined to a hospital room for the next X months. Anna is out right now, in fact, scouting out possible apartment locations.

And for the time being I’m a mystery man. Apparently it’s extremely rare for leukemia to resurface in the brain like this, or at least for AML to do so. And even when there’s a “16 inversion,” meaning that something is wrong on chromosome 16 so that the wrong enzymes are expressed—wich I think Dr. Giles or is PA, Mary Alma Welch, said was the most likely scenario for this—it’s still extremely rare. Dr. Giles said it’s so rare they don’t ever expect it or look for it—and they might not have seen it anyway since everything else seems OK (at least so far) and it might have escaped detection. He made it sound like leukemia is or can be devilishly clever, taking refuge in “sanctuary sites” where the existing instruments can’t spot it. (I was struck by this language—Dr. Giles is Irish, and I couldn’t help wondering if the metaphor came from his experience there). It’s frightening, but it’s interesting, too, and Anna said that Dr. Giles reminded her of a detective on the sent. But what the hell—this is one area where I’d have been perfectly happy to be perfectly ordinary.

We’ve met a lot of nice people, too. At lunch yesterday in the Marriott we talked to a woman who is here taking care of her sister; she told us about another hotel called the Rotary House, which is actually owned by M.D. Anderson and operated by the Marriott Corporation. It’s connected directly to the clinic via a walkway on the 3d floor, and is less expensive than the Marriott, where are nlw; apparently medical staff actually come to Rotary House to collect  blood samples. (A friend from BodyChoir had told Anna about a place like this, but I had missed the name; must be Rotary House.) We’ll be moving to the Rotary House tomorrow amd staying at least a couple of days; I guess it depends on when we can find an apartment.

I think it was on the walkway from the clinic to the Rotary House that we met a young girl, a teenager Anna said, who burst into tears when she saw Dillon. She said she hadn’t seen an animal since she got here—sometime in April—and she missed her dog at home. I took Dillon out of harness so she could say hello to him, then realized I probably shouldn’t have done it—turns out she’s  transplant patient, as I will be, and it’s probably not a good idea to handle dogs.  Then several other people wanted to pet Dillon, too, so left the harness off for a couple more minutes before we resumed our walk across the skiwalk.

We just had a wonderful dinner at a place called Café Rabelais—smoked duck and mango salad, filet of pork in a Dijon mustard sauce, a mexed berry tarte, a glass of something from Bourgogne. We had to do it—the PA to.d us as we left Dr. Giles’ office this morning that we should go where we want, do what we want, eat what we want. What else could we do but follow instructions?
And now back to the other reality: in about 5 minutes we’ll call the UT Police Department for a ride back over to M.D. Anderson, where I’m scheduled for an MRI scan of brain and spine. We’re due there at 8:30; once I go in it shold take about 45 minutes. I have a feeling that by this point in the day they’ll have had time to get really, really far behind schedule.

**Actually I was wrong. They were right on time, and I was done by about 9:r45, and we were back in the hotel about 30 minutes later, thanks to a ride in the UT Police Department shuttle again, with the same driver playing terrific jazz—Coltrane on the way there, Ahmad Jamal on the way cak.

One surreal moment: the ABC Building (Ambulatory something Clinic) is a huge place, in a building that’s only been open for about a year. At that hour it’s pretty empty, pretty quiet. In the Outpatient MRI Clinic, Anna and Dillon and I are seemingly the only patients, though I can hear the pulsing of at least one MRI machine somewhere, so someone else must be there as well (there are four of these machines in the clinic, each a multi-million dollar thing, so presumably they want to keep them going as many hours a day as possible). The surreal image is this: I am in a small room, sitting in a big leather reclining chair like the ones in the Infusion Room in Austin. The tech who led me in there to change from my street clothes into what seems like scrubs (I had to leave Dillon out in the waiting room with Anna, since his harness has so much metal on it) is a man from the Phillipines called Mineheart. He is playing music somewhere in the office. It’s the Lettermen, singing songs from the early 1960s. Mineheart asks me if I can hear the music. He stands in the doorway, singing along. He knows all the words. “Put your head on my shoulder…”

I know there are lots of errors in this text. Some of them are ordinary, everyday mistakes that I would have made anytime and corrected without a second thought. Some are not. I’ve decided to let them stand, because I want to document what’s happening; maybe there are data here that will help the doctors figure out what’s going on and how to treat it. Maybe not. I find it very painful to let the mistakes be.

Love to all of you, and     


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