29 July 07
Some Technical Details, a Little Moisture, the Desert
Oh, dear. I am so slow to write, so characteristically laggard in communicating, even or especially with those I love – it is that, rather than the weight of news, that has so stayed my tongue and pen this time – and meanwhile word is trickling out and around, and you who have heard already have been too kind to knock or call, all but three in as many weeks so far, who have left the very lightest and most welcome touches to remind me, speaking for so many, of what you feel for me. And I am full of tears now, on letting myself know this, for only the second time since the news began to break on my own shore.
The first time took three weeks. I came back from the first session of Camp Chrysalis on a three-day turnaround before leaving for the second, to a message from the vacationing new internist whom I hardly know yet: “your routine counts are alarming.” I saw them next day at his office, they were indeed. “Get me to a hematologist tomorrow,” I asked his stand-in, “I’ve got a camp to run.” Miraculously, it seemed, he managed: I saw the fellow next morning, though he didn’t have time to do a bone marrow biopsy till the next day. Whenafter, I trooped off to camp only a day late and variously distracted, knowing nothing would budge until the biopsy reading arrived twelve lagging days later -- with a thick sheaf of paper on hematological disorders to entertain me, and to get my polysyllablicity up to speed, preparing to talk turkey with these folks.
I drove down the third night of our Sierra session to parse the biopsy with the quickie hematologist, who’d already impressed my support team as a trainwreck. He asked how many transfusions he’d given me so far, scanned my biopsy for the first time (we’d had it for days), and flip-flopped back and forth on what might ail me each time we pointed out another factor, imagining details he hadn’t read to support his new conjecture. My marrow was so fibrous that the biopsy was botched, drawing just enough liquid to say so and to provision the flow cytometry readings revealing a mutant clone of stem-cells with enough genetic derangements to spell “poor prognosis,” in chorus with my counts, my age, my fibrous marrow. Leaping over the cloudy pit of diagnosis, he went through the options, sort of. When we asked about stem-cell replacement, which he hadn’t mentioned, he allowed as how I might find someone who’d try such a dicey thing if I really tried, but he thought it too foolish-dangerous to contemplate. On the first visit, his excellent nurse had told us frankly that he was over-booked and under-performing; after this episode, Lorca asked her how she could bear it, and tried seriously to recruit her for Kaiser.
Need I say, I didn’t return to the Sierra session? It was comforting to have so fine a staff team there, and to be so closely companioned here by Lorca and Karen – not simply from who they are, but because we had formed such an intimate team in his cancer crisis nearly thirty years ago. How it all came flooding back and forward, with our relations so permuted now! And with such chops brought to the task, with my ER-doc son on point like a border collie in each consultation, piling meaty bones gnawed from online med-sources upon my reading-table, and Karen riding shotgun on his assessments and working the network to get me a first-rate hematologist at UCSF – such sound guides and helpmates in negotiating the systems of thought, the systems of practice.
Well, that’s poetic license, a bit; but I get to, right? The field of hematological disorder and treatment is a mess: the clinical entities are still mostly vaguely defined and overlapping, and there’s hardly a clue to what works and why or not in any particular case, only the patiently-assembled, fragmentary statistics recording what’s happened from what’s been tried, suggesting what to try next, hinting at the odds. My condition probably falls somewhere in a pit bounded by myelodysplastic syndrome (“messed-up marrow”), acute myelofibrosis (“sharply fibrous marrow”), acute megakaryoblastic leukemia (“sharply-multiplying platelet stem-cells”), acute panmyelosis with myelofibrosis (“… fibrous marrow, all cell-lines afflicted”), and so on. More marrow biopsy and fancier genetic testing might tell us more about categories, but are unlikely to illuminate the major practical questions of how soon my condition will grow how much worse, and what to do.
In sum, there seem three options (allopathically, to be sure; but if the cut-burn-poison people were good enough for my kid, I can scarcely scorn their present art.) One is to do nothing but treat palliatively, with transfusions as needed -- which promises a median survival of less than a year, or even less if my age be factored in, or maybe not if my youthfulness is reckoned against that, or even less if the cell-genetics are heeded, and so on. Ugh. The second option is to try for a remission. An analogue of thalidomide reversed symptoms for a few months to a few years for some folks, in some diagnostic categories only. Of course, the side-effects were bad enough that 45% dropped out of the trials; but now they’re using a much smaller dose plus a bit of prednisone, and only 5% are dropping out, which sounds way more bearable even if the success rate is only about one-in-three – until one reflects that temporary remission means it mostly comes roaring back. But even so, three years would be three times more than one, right? if I qualified?
So the only chance of an actual cure is option three. So listen closely. They used to call it “bone marrow transplant.” They demolished your marrow with poisons and radiation, and planted the supposedly-sterile hollows with someone else’s marrow. Treatment mortality ran 30-50% even among kids, which is why no one does it on people over 60. But some younger ones did get cured, at least of their original disease, if not necessarily of their acquired one of graft-vs.-host (GVH) disease. Now the pros have come to a subtler understanding: why this worked was not just the marrow-demolition, which didn’t actually wipe out all your bad cells – but it was the new, grafted blood-making cells, whose progeny went after your residual bad blood-stem cells, destroying them all (in favorable cases), before sort of going after the rest of you.
So the new regime is no longer “bone marrow transplant,” but “hematopoeic stem-cell replacement.” They don’t hammer your marrow nearly as much, so they’ll even do it with folks my age. They no longer inject you with a quart of donor’s marrow; they just take someone’s peripheral blood, pull some stem-cells out before returning it, and deliver them into your vein, to plant themselves in your marrow by themselves. Treatment-related mortality is down to 15% or less, which sounds grim until you think of 30-50%, or the 100% end-state of option one. Full cures actually happen with 10%! Wow! And what of the 75% in-between? Well, the original blood disorder does seem to go ‘way; and we’re left with a bell-curve of responses to graft-versus-host disease, ranging from mild occasional itching, to such litanies of minor and major problems that some on that end of the curve wish they hadn’t. Roughly speaking, the light half of this curve seems like a great bargain, given my circumstance; and the darker half not so great, grading to grim.
So here I am, looking to check out options two and three in more detail, leaning towards three. Trouble is, I’ll do worse if I’m in worse shape by the time I begin, and there’s no telling when I’ll slide further beside “sooner rather than later, probably,” so time presses for decision. The best possible donors are my brother and sister, who between them offer me 7 chances in 16 of a best-possible match. But institutional and HMO wheels grind so slowly that checking them out has not yet been approved, so it’ll probably be weeks before I know if they match. If not, then it’s a search through the general registry of 8,000,000 potential donors for a somewhat inferior match, more likely to court more serious GVHD.
So it seems like a fine time to go to the desert with my family, plus a bunch of reading – more hematology for me and Lorca, a bundle of my writing about science teaching for them, to get their feedback about what – from so much, after so long – might make a proper book on the subject. With Karen and then our kids, and sometimes alone or with others, I’ve been going to the Ryepatch area for 41 years … an austere and vibrant Eden, or so I’ve found. As fine a place as any to fertilize with my bones, I’ve thought since long ago. It’s hardly macabre to remember. Meanwhile, my odds may actually be decent, and the light there is beautiful, changing all the while.
If there were aught you could do for me, like share your blood, I’d not be shy to ask. I may in time come to be grateful for a meal or whatever, going through whatever I do; but for now, there seems to be nothing practical to do, besides radiating some love into the cosmos – and if so, for how much more than my picayune plight! – and perhaps sharing some relevant reference we may not have heard of.
Enough for now, I’ve got to finish packing and get some sleep, before embarking in my wonderous old Suburban – with 4WD, compound low, armored gas-tank, it can go anywhere. On the back-side of the Humboldt Range there are seven permanent trout-streams, one with fish as long as my arm, slapping my legs impatiently beneath the arching roses and currants. May such pleasures come your way. More anon.
Michael 29 July