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Phase III – Day 113 onward – Relapse

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         So early on the 26th, four days ago, my hematologist calls, with rueful news. The cytogenetics finally enabled by the spicules from that last bone marrow biopsy have come back from the lab. Of 21 cells caught in division, fully 18 are male – meaning my myeloid malignancy, resurgent, rather than Devora’s female cells.

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         The picture suddenly clarifies and deepens: yes, I have been dancing with GVHD; and no, that didn’t account for my falling counts, nor carry through the job of eliminating the residual tumor burden. Though my marrow fibrosis had half-dissolved by two weeks after hospital, per the biopsy that had left Jeff exultant, by two weeks later the remaining unobserved malignancy had multiplied sufficiently to start depressing all the lines coming from Devora’s stem cells, persisting even as GVHD finally came on, accelerating. What wonder I needed transfusion, what wonder my pants are falling off my skinny ass?

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         That afternoon, per schedule, Karen and I went out to Olema to cover Sage, while Lorca worked in Kaiser's E.R. and Stephanie was off in Nursing School. After I’d romped enough with Boo, sparring snarling on the rug, he led Sage and me across the highway into the green valley, where we wandered till nightfall examining apple-trees in bloom, watching him plumb the fecund gopher-holes, noshing on miners’ lettuce, savoring lichens’ ruffles and the sharpness of the Dipper as it appeared through the sunset’s modest fading glory; and wandered home in time for the pasta fit for an already-vegetarian princess that Karen had laid on table. Afterwards, I brought in this big bag of Cricket magazines that Amy had sent for Sage.

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       At six, though she’s already reading with confidence, the texts were way too sophisticated for her to attempt, though perhaps not to hear. But the poems! By fortune, the issue I chose had three precisely pitched to her experience and gloriously illustrated: one about a rose after rain, with diamonds on its petals, silver on its stem, gleaming like a jewel in the sunrise … another about swallow squabs perched on a basketball hoop waiting for their air-fishing parents pirouetting above for insects to score a slam-dunk in their open bills … and a third turning everything she’d observed about the tumbleweeds she’d gathered so earnestly on our Nevada desert trip into clear lucid cadences she could nearly have written herself already. What a fortunate gift! And what magic it opened, after I told her that I had been barely her age when I started writing poems.

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         For she got out her own book, made a year or so ago, and read it to me. Tracing the lines of odd, nubby, roughly-consistent hieroglyphs patiently with her finger, page after page, as she pronounced their strange syllables aloud with all the grave awkward precision of a child mastering ancient Greek or Hebrew, utterly unfeigned and utterly convincing, pausing after each line to translate rapidly and then resume, introducing me to the world and family she had come from and what she did there, before she came to be born again to her dear parents here. No one had warned me, not a hint. For an hour she went on after closing the book, telling me more and more. “But you can’t know everyone there,” I suggested, “it can’t be that small,” and she readily agreed, that was just her neighborhood there, as sparse as her rural one here. And explained how no time passed here while she was there, so that she could spend quite a while back home during a brief lull in the classroom, though she allowed as she hadn’t been doing it as often lately, maybe once a month or so. Perhaps in part because she’s been on such a rich diet of contemporary fantasy books with her mom for some time now. O gee, I said cautiously, that’s neat. Though it’s really important for you to keep going back often enough to keep seeing what’s there as it is, instead of letting it get dressed more in the costumes of these books …

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         And her reflective chatter then segued to the twins of a teacher, who were born on Valentine’s day, and how neat it would be to have a family where each member was born on a holiday, Christmas, Thanksgiving, Halloween, as so often in her first world. But in China (she’s part Chinese), I observed, they have a harvest festival that doesn’t fall on our Thanksgiving, and so on, for a whole new family constellation of holidays. O yes, she said, getting it instantly; and Karen reminded us of Los Dias de Muertos, the candied skulls of our Mexican compatriots, of death as part of life. Which put me in mind of what we did with my mother’s ashes, after scattering half with wildflower seeds on the hillside between the house she’d raised us in. After explaining that “ashes” meant crushed burnt bone, and how beautiful it was, I told her how I took her father, then seventeen, and her uncle, just her own age, up the creek a mile to a wild place that Beatrice had loved, with my own quarter of her ashes remaining, and cast pinch after generous pinch to the four ways of the winds. And then swallowed a big one, washed down by my tears. “Is that okay to eat?” she asked. O yes, it’s calcium, just like your mother takes to build her bones; and my mother’s bones will live in mine, and she’s seen through my eyes wherever I’ve gone, to Baja with you and to gaze atop the far volcanoes of Chile.

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         And by then it was ten, three hours past her bedtime, and she tried dutifully to snuggle into sleep but couldn’t quite, until Steph arrived home from school to put her efficiently in her own bed, before returning to revel briefly in my amazement and wonder before we took off to get back to Berkeley before midnight, to rest up for clinic in the morning.

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         Lorca joined us there for the subdued conference with Jeff. Though he’d said ten hematologists might suggest as many approaches, he and several colleagues had consensed on one, pretty much for sure, though they’re waiting till Monday to decide about another. Absent that, I’m due to go into hospital again on Tuesday, for three to four weeks if all goes as best it may. The program is to run me through another protocol of intensive chemotherapy with different agents (by acronym: IDEA), the rationale being that that will beat down my malignant myelocytes much more than Devora’s established lymphocytes, as experience seems to bear out. And that then they’ll hold off on the Prograf immunosuppressant, unlike last time, leaving her T-lymphocytes to chew on me unchecked, until maybe this time they work up enough GVD (graft-versus-disease) activity to knock out whatever malignancy remains. Helped along maybe by transfusions of additional fresh T-lymphocytes from Devora; and/or a second transplant from the generous remainder of her harvested stem-cells still waiting in their freezer. Who knows? They’ll have to play it by ear, with frequent biopsies, and all sorts of additional drugs, not to manage my GVHD but to palliate my reactions to this.

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       Well, it all makes some sense, or sorta. My experience with chemo won’t be anything like my cakewalk the first time, since my body’s still beat-up from then and the GVHD. And as for GVHD unchecked – well, given how a mild intestinal case has felt, I can hardly wait. What gripes me, what scares me, is not suffering and the empirical scrambling to palliate it, but the prospect of lying there listless, unable to put those two other books on the website, hook it to others, keep on working by email and wicki with my colleagues in posters and politics, do more than smile wanly at my loved ones taking their turns at bedside with their patient books, giggle a bit as Hilary crumbles and the Republican ugliness starts gearing in for real. Though I figure I’ll still be able to snuggle some nights with Karen, and tantra-gaze with Anne when she comes. And that the clever Long 11 staff will be able to help me salvage some productive time from the peaks of GVHD palliation …

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         Going into hospital the first time, a rational prospect gave me 30% odds of lasting more than a year, though I figured fortune was likely to up this. Coming out so fine, I figured the odds were up to 70%, and 20% to last another twenty and beat my dad. This time going in, 20% to last two years seems optimistic, and the odds of never emerging at least as high, given infectious potential and what-all. But maybe my hematological magicians will find some other tricks up their sleeves. And maybe all those who’ve been actively praying for me …

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       … hey, I’ve hardly begun to mention how wide and wonderful the network has been, from Dustin Miller with his band of Christian Brothers down on the coast, to Mayan families in the Guatemalan highlands, a HUNA healing group and a Native American shaman in New York linked-in by Amy�, Tibetan monks putting out on my behalf for baitshrimp saved from early death by Yvonne, familial prayer-circles in Missouri and Texas, and such a diverse other array of near and far dears with their own perspectives and devices that I’ve longed for a way to assemble a representative survey and put it forth here with a straight face for its marvelous variety and power, long past doubting for an instant – despite the recent double-blind studies apparently debunking the power of simplistic intercessory prayer – that what moves beyond our ken is genuinely mysterious in its potencies (see “Anomalies” on my website, or http://mrossman.org/newageblues/molly.html, or my suspect papers about the FSM itself), and merits such description and celebration as we can manage, whether or not it can be rationally connected to how easily I sailed through the first round and how serenely Karen remains convinced that it’s not my time to go this time … I just haven’t made the time to ask briefly on my laggard blog for you all to send me explicit reminders of who’s actually done what how, so I can put the panorama together and let it shine by its own light; but now I’m doing so, and if you drop me a succinct note to this effect please put simply “Prayer” in the header, however you may think of this, to ease my filing problem …

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       … and so maybe this too will go on weighing in some balance. Plus I’m still up for the whole thing, this adventure in all its gory glory, with the sea rising as the sky falls and the gates of heaven gape eternally wide within us as without. I didn’t realize that I hadn’t felt an instant of self-pity until Karen mentioned it with awe after the mouth sores from my first round of chemo healed. “Gosh,” I said, realizing she was right, and wondering why, although I knew. I do tear up from the gut now and then, when I think of her and my siblings and Lorca and his family, of Anne and Lincoln and Amy and Gary, and mostly deeply of all of Jaime for whatever why, most dependably, that just brings it on, in brief choking sobs sometimes, even more than for Sage. But as for me – hey, you’ve got to love it, that’s the Law, you’ve got to love it all. You can’t say, well, this part’s just fine, but that part sucks, I accept this and reject that, for you’ve got no choice. It’s one thing, it’s integral, in all its facets, all its depths. You love it as it is, you love it as it turns out even after you try to make it better, as you do, as it is: that’s your only choice. And maybe not even a choice, but a swell of glad metabolism so fortunate to ride. I feel so blessed by that, as well as by your love; you can see I’m having a fine time with it all, even the torture of HealthNet’s outpatient meds, boy, I hope I can squeeze a few hours to write up all its baroque glory in enough precision to send to the State regulators … but at least I won’t have to worry about the next struggle with them till I get out of hospital, where my meds will be comfortably covered …

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       Which brings me to the last two issues, one quite personal, one needing to ask for your tangible help at last. The personal question is whether the dignified way out – to take only palliative treatment, suppressing the GVHD and transfusing red-cells and platelets until the marrow-choking malignancy brings my untransfusable neutrophils so low that only hospitalization with IV antibiotics can keep me going until infection or transfusion complications finish me off, a matter of maybe three months in each phase, pretty functional for the first half, at best slowly declining during the second – the issue is whether the good time expectable from this is likely to match or exceed whatever patches and stretches are likely to sum from the process of fighting it through. I didn’t much care how much my dear familiar Flux suffered during the end phase, in a sense; I gave her the terminal injection with my kind vet’s help only when all her joy was gone, and can scarcely wish for otherwise myself. Only I’d like to know that the odds for somewhat more cumulative plus time are at least equal on the active branch, whatever the pains; and we’ll talk more about that on Monday, Jeff and I. But I do think I’m going for it, as a prudent gambler still hot for the adventure, unless he says some simply awful numbers.

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         For I think of John Vollers, the smartest, most prolific contributor to the BMT and GVHD list-serves I’ve been following – a savvy family doc a bit younger than I before he came down with AML and extensive fibrosis, so like mine, and relapsed in as short a time, and went back in for second chemo and unconstrained GVHD – which much to his doctors’ surprise extirpated his malignant clone completely, leaving him free for the past two years to struggle with such a wide and abusive variety of GVHD manifestations that his constant research and experiment in palliation have enriched the list-serves immeasurably for hundred of lurkers, not least myself. I know that one case is only an anecdotal number; but boy, does that seem like a fine outcome from here, with so much more plus-time under the lumpy curve than going gently into the night; and I’ll bet my odds are as at least as good as his were, with all and everyone I’ve got going for me. And how sweet it would be to hear Sage tell me more about her original world, and to watch how the long-gathered surge of yearning to do good, made visible in us so suddenly by Obama’s candidacy after forty cumulative years of enduring meaner and meaner meanness, persists in flowering despite the clay feet he’ll reveal, for the magic’s in us, still rising in our hands, almost to consciousness now; and so it goes, oy, not to close with a political sermon, but aren’t all our hearts in our throats, and so much mattering so more than my petty indelible joyous struggle?

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         As for the other matter. I’ve decided it’s time to make my home habitable again, directing the project from afar room by room while I’m in hospital, with my brother Jared’s on-site management and such help as my friends can pitch in, boxing books and specimens and archives, labeled neatly and stored, with some hired help to refinish the walls that haven’t been touched during the decades I’ve kept the rental units up to nearly-high-bourgeoise sparkle, and so on. Who knows, maybe it can be done by the time I’m out of hospital. Gee, how nice it would be to be back on my own turf, even so Spartan, despite all the warmth and comfort I’ve had here at Karen’s, who could still walk the few blocks to cuddle and tend me some nights each week, with Anne and others to share the job as I convalesce and struggle with GVHD … The prospect seems heavenly; and the house refurbishing simply has to be done, whatever happens how and when with me, so it might as well begin.

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       The first step is to clear out all my plants for at least some months, maybe more, maybe some or many forever – for their moist pots are prime incubators for molds, and I don’t know when I’m going to have active T-lymphocytes on the job again, unless they’re just left to ravage me unchecked after extirpating the malignant clone.

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         So here’s the deal; and pardon me for the late notice, but it’s obvious why. Tomorrow, on Sunday, from 4 to 7, and Monday again during the same hours, I’ll be holding open-house at 1741 Virginia as the HEPA-masked horticulturalist, inviting you to host a plant or two or three for the duration, however long it be. Big ones, small ones, orchids of a dozen kinds, sphagnum moss in a mug, the wide-spreading philodendra, oddities from horticultural sales, vigorous Salvia divinorum (psychoactive mint, still barely legal), wide-spreading ferns – gosh, it’s been a lovely jungle, with so rich a faunal and fungal ecology that I’ve yearned for years to write it up again (see http://mrossman.org/scienceeducation/learninglife.html for its status three decades ago.) But it’s gotta go for now, and better into kindly hands, and I’d appreciate your taking a bit of loved life on for me, before I turn to parceling out the trinkets and microscopes. There are at least fifty of the latter, from under my bed to high in the attic, mostly sheathed against dust, and by now – due to the fall of the Wall, and unleashing of Russian and Chinese microscopic prowess in the world – worth so little as tax deductions to school that if you or your kid or grandkid has a use for one, you should surely let me know. But the plants must go first, and I hope you’ll be able to lend a hand. Whatever, do drop by if you can; I’d love to see you there for a bit, before I go into seclusion. UNLESS YOU’VE BEEN RECENTLY SICK OR EXPOSED – I know that should go without saying, but still I must.

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         And much love to you all; and may this actually get in your email and to my blog by eleven, for it’s ten p.m. already. Gosh, I’ll sure sleep after I get it off.

     

  Love to all,
        Michael

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[User Picture]
On March 7th, 2008 03:12 pm (UTC), waihili commented:
respectful correction
Hey there, dear friend,
I'd like to offer a respectful correction: there are no such things as "hula covens." That term could give a distorted picture of the culture and such distortions do grevious harm (even when unintentional, as in this case).

However I will take credit for contacting a long distance HUNA healing group run by Aloha International, who marshaled "mana" on your behalf, as well as connecting with a Native American healer and shaman in New York. In addition, painting the medicine wheel was an offering to your current and future health.
Just for the record...
Warm Aloha,
Amy
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