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Sunday, December 14, 2008
Yes, per my last post, I said I'd be post-round three at this time. Checking into the clinic two Friday's ago, well-prepared entertainment- and nourishment-wise for chemo round 3, they turned me away at the door. (Pardon the late reporting on this, but I try to save postings for when I've got something more or less certain to report. As things change by the week, I'm continually pushing off postings. Well, if you're into rollercoaster rides and cliffhangers, this is the disease to follow -- the Dallas Cowboys of cancers.)
My blood values (in particular, HB, leukocyte and platelet counts) were, and still are, too poor to subject to chemo. Which explains why ascending a flight of stairs involves patience, planning and persistence akin to a flight to Mars.
So instead of chemo, comedies and bean-cheese burritos, I got a bone marrow drilling. Better to have it come as a surprise rather than having the appointment loom over your head for a couple weeks. When the final biopsy results are in next week, docs can determine whether the poor count is due to: a) my white blood cells fighting off viruses, b) stem cells in bone marrow completely wiped out after meanwhile 11 rounds of chemo, or c) lymphoma cells growing again in bone marrow.
The latter option is unlikely since the marrow's been clear since last spring and the FCR chemo has proven effective in shrinking the BOAT. Initial results indicate it's either "b" or "c." Option "b" means we'll likely forego further chemo and instead do an "autologous" transplant -- of my own stem cells, collected in April. Then, when a donor is found, the allogeneic transplant. Option "a" = phew, for now, and round 3 for Christmas, or to kick off the new year in style.
Tomorrow I get a blood transfusion to perk up my red blood cell count (meaning more carriers of oxygen throughout my veins and an easier time ascending stairs and the like). On Tuesday, results will be in from the latest blood test and biopsy.
And so while I brood out whatever bug has got me, the doc has applied to me the same rules as a park ranger to bears in winter: stay warm, get plenty of rest, and keep a safe distance from humans and the viruses they tote. So please excuse my opting out of your invitations to Christmas markets, sleigh rides, snowball fights and, sadly, pic'a'nic baskets. This holiday season, I gotta be smarter than the average bear.
On the bright side, the low platelet count means that my meanwhile blue-spotted belly gets a break from the daily-double doses of heparin shots (blood-thinner to fend off the thrombosis). I must confess, and did to my doc, that I had only been doing the morning shot for about a month now. Not on doc's orders but of my own self-diagnosis that my blood's running thin enough as is, thank you very much -- and of a firm belief that shots after 8pm should be strictly of the whiskey or liqueur variety.
Argh, this just in as I write this post: Doc called me in for a further blood test (to see what kind of virus I have) and has prescribed daily shots of neupogen, an injection to boost white blood cell production. Oh well, back to belly blue.
Whichever way the blood tests and biopsy go, we need to buy some time anyway: Turns out my stem cells are hard to match. Of 12 million people in the worldwide donor database, only 2 are potential, albeit suboptimal, matches. So the search goes on, along with hopes that one of each month's handful of newly registered donors will be my lucky 7. Or rather 8: the number of key traits (out of the top 10) that need to match.
Which brings me to my next point, about which many of you have asked: How you can see if you're a match. To register in the worldwide donor database, you can order a self test -- as my brother, sister and groundman comrade Torsten have done -- on the DKMS site in Germany or NMDP site in the states. The test runs around 50 EUR / $ to cover the lab costs. These are swab (Staebchen) tests, in which you simply swipe a Q-Tip-like swab inside your cheek and send it in. Or, for those of you in Germany, if you send me a note to chris@goold.de, I can order you a blood test kit from my contact at the German Red Cross (DRK) in Frankfurt. Or, you can go to the DRK in Frankfurt (near the Uniklinik) and have your blood tested there. Ask for Frau Lehniger, who's involved in my donor search. Or, if you don't want to register in the database but just would like to see if you're a match for me, you can ask your doctor to run an "HLA blood typing" on you, and email the results to me.
Realize that your chances of being my match are 1 in a million, billion, zillion, or perhaps even brazilian. With the current 12-mil database, a good match can be found for only 1 in 5 hopefuls. But, hey, miracles do happen and, as we know, every Who in Whoville can make the difference. So, I welcome you to register, grow that global database of Whos and reduce the 1:5 chances that a lymphoma or leukaemia patient's hopes St.-Peter-out just shy of the pearly promise of a good-match stem-cell transplant.
If an optimal match can't be found, I may need to resort to treatment at a different clinic (Hamburg, Heidelberg, Munich), where they do "haplo," or half-match, transplants. But I'm hoping things work out in Frankfurt, where the docs, nurses and staff meanwhile are practically family.
And to you, my virtual family, in case I don't post before year's end, I'll wish you now Happy Holidays and a Happy, Healthy and Hopeful New Year.
On with the rock.
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