4 March 08
Bulletin Update Bulletin (so soon!)
Please bear with me; this is complex.
If you haven’t been getting such occasional notices from me, and/or know only vaguely what’s going on, then looking at the sparse but voluminous installments of my blog will catch you up to what’s next here. You’ll find them neatly and chronologically at http://mrossman.org/leukemia/leukemiaindex.html, or more messily in inverted order but with many people’s commentaries at http://mrossman.livejournal.com.
So, assuming you’re up to date: Yesterday’s news is a maybe-major shift in plans, maybe. I feel as if caught up in a game of Othello, “the game of dramatic reverses,” nested inside each other. My hematological overseers have conferred and (nearly) consensed again. No, I won’t be going into hospital this very morning. Instead, on Thursday, I’ll go in for yet another blood marrow biopsy that they hope will provide them with enough spicules and blasts to determine whether my myeloid malignancy cells bear the CD-33 marker that might enable a target-seeking monoclonal antibody to home in on them and not much of the rest of me.
The agent – gemtuzumab ozogamicin (“Mylotarg”) -- is neat, actually, if one admires this sort of exploration, as I rather do. Its anti-tumor agent calicheamicin, discovered in a Texan clay sample, is 1,000 to 10,000 times more toxic than traditional chemo drugs – so much so that they can’t just inject it in people. Instead, Genentech has figured out how to hook its molecules to antibodies that will home to CD-33-marked cells. Of course, the spectrum of side-effects runs from moderate to ruinous, tipping towards the latter; I won’t detail them here, but googling Mylotarg will satisfy your curiosity. Nonetheless, Jeff says, they think this approach will beat my body up less than the IDEA chemo regimen they proposed Friday, and maybe even be manageable mostly on out-patient status if the worser side-effects don’t kick in. It doesn’t promise better odds at remission than the 20-25% of the IDEA-etc. program – but if it fails, I’ll be hardly any the worse prepared to go through that one next, unless they can think of another. So what’s not to like?
Oh, those poor dears, trying to figure what to do for me! The hematologists’ approach is necessarily clinical and distanced – the nurses feel so much more of and for what we feel – but I have made warm personal connections with two of them, and I know how happy Jeff felt when all signs said I was sailing through, and not just because he was going to get a publication from my case.
So that’s the revised immediate program: a biopsy in two days, then seven to ten of waiting till the CD-33 analysis comes back (and maybe another biopsy if the first isn’t conclusive?); and then to dance with Mylotarg, or maybe with IDEA if the markers aren’t there, though Jeff thinks they will be. So, would Mylotarg be followed by an encouraged GVHD/GVD attack, as described in the last installment? I dunno, we haven’t had time yet to discuss this. And hey, isn’t it dangerous to delay aggressive treatment even a few days, with the malignant clone growing so aggressively (18/20 in the sample?) Well, it’s tricky to judge. No blasts (immature cells) from the malignancy are appearing in my peripheral blood yet. And it seems to me, from my patient graphs, that the decline of my red-cells and platelets since the New Year has been gracefully gradual rather than accelerating, which suggests that the growth of the malignant clone in my marrow has been similar in pace, simply gumming-up the works more and more, rather than exponential. That’s the biological sense those wiggly lines make to me; and Jeff agrees: there’s time enough to check out the Mylotarg gambit without much more endangering me. Probably.
Thus, my crude expectation is that I’ll be entering hospital around 17 March, for a longer or shorter stay, depending. Unless some other reversal occurs.
So there! For those who’ve wondered why I don’t just blog every day or two like a normal young person or logorrhoeac – this and what follows will show you what happens when I do. A clear technical exposition should be welcome every now and then, and likewise an evocative picture of the textures of uncertainty and decision that attend my life, and the other textures too. But really, who could welcome this sort of obsessing even once a week, however more often I go though its changing permutations myself? To blog only sporadically is a strategy not only to save myself from debilitating addiction – how rich reality appears each time I try to represent it! – but to save you from getting sick and tired of me.
As for my midnight plea Saturday for friends to come help take away my plants, as a first step in preparing the rehabilitation of my home, your response has been awesome. About fifteen people showed up on Sunday afternoon, and as many on Monday, with others deferring from fear of contagion to me. It was wonderful to be among so many of you again, even masked, in such congested and swirling quarters. Such warmth!
I had thought simply in terms of parceling out one or a few plants to each person to tend, and began helping some to choose. But Heather grasped the energy there and catalyzed its collective expression. As I watched and helped a bit, enthralled, they together deconstructed the entire canopy that has sheathed the living-room ceiling and upper walls for thirty-odd years, loosening, lowering, untangling and coiling neatly the fragile, interlaced twenty-foot lesser-philodendron vines with less damage than I could have managed in a week. Kevin’s tall hands led many in helping Lincoln rescue and secure the large-leafed philodendron spread across a quarter of the ceiling, to cart in his 1946 jeep to his grand home. The dozens of lesser ones were neatly organized, and some taken away, along with some of the orchids and most ferns from the bathroom and den – and, that afternoon and the next, such a horticultural miscellany that I could spend loving bedazzled pages in excursion, but forbear (see http://mrossman.org/scienceeducation/stinkingsense.html for one example.)
Over a two-hour flurry, their productivity was remarkable – and was repeated the next afternoon. This time, besides deconstructing and organizing the bathroom jungle, and some more of the den and even much of the back bedroom’s flora, and carting a fair number of plants away, Karen and Heather led them on to just plainly violate my cautious intentions. They began to pack away the great variety of amazing, wonderful specimens and artifacts that have made my living-room like the cluttered cabinet of a nineteenth-century English naturalist (o that again!), a wonder to children as to some of the children within you. So much was so delicate – Bruce wrapping ten different fragile sea-urchins and –biscuits, Helen arriving from Santa Cruz to zipbag tiny skulls – that even this evisceration of this room is but a quarter done – but it is begun, the big shelf cleared, the walls stripped naked of their intensive graphic ornament – the mantle still hardly touched, the table overflowing with transported treasures, specimens and artifacts still lining every bookshelf’s margins -- but begun.
It’s hard to express how shocking it is, how I’ve so resisted for so long, how I’m so up for it now, indeed thrilled. Living in one place (with an attic!) for thirty-four years, as a selective hunter-gatherer and archivist with diverse interests … oy, the various libraries, concentrations of practical tools, 30,000 political posters, camping gear, archives of FSM and other special foci of that era, the flutes, the microscopes … that hardly covers it. My sons have begged me for years: “don’t leave us to deal with all this, we can’t just take a few things and dump the rest, there’s so much that’s special and precious.” And I have hardly known how to begin; and I’m not really up to taking on the full project now – but the project of physically refurbishing my home so that I can live in it again offers a more modest, practical avenue to dealing systematically with some of its components. And for reconstructing a more streamlined and freeing field of action for what I still have some grounds for hoping will be a decade or two.
The most coherent next step will be to neatly pack away the various libraries in the living-room and den, for storage until. I’ll appreciate small units of help in the bulk task – and, if I manage to triage the books to decide what to retain, taking a box away to dust to make them safer would be an easy mitzvah. And so my thoughts race ahead of the situation … some coordination will be necessary, good labeling, record-keeping … maybe my brother Jared can straw-boss in a few weeks … if I can do Mylotarg as an outpatient, I could even hang out masked to guide matters, but much will be possible without this. Beyond this and more complicated eviscerations looms the project of refinishing most of the interior rooms – just the sort of work that I actually have loved doing downstairs and in the cottage, and will keenly regret not having my hand in, especially in restoring the gracefully-coved plaster ceiling of the living-room to the state I’d brought it before three decades of horticultural wear.
If you’d be up for a few hours’ help with one or another component of this loosely-sketched diverse project, please send me an email with the simple subject-line “help,” and a brief note about what might appeal to you and when you might be available. I can’t promise that an efficient process will develop to coordinate what offers come, but it’s a real possibility. And besides finally having something finite and tangible to do to help me – o, I do know how frustrating it’s been, for there’s been so little to do so far even if I were not so laggard to ask or accept; that so shone through the buzzing energy the past two afternoons – I think you’d be pleased to meet and work with each other in small combinations. The people in these sessions were a cameo of my world – musicians from my jam-band, colleagues in my poster-work, comrades and connectees and descendents of the FSM (oh, Moira! so sweet!), partners in my summer-camp, lovers, vibrant neighbors, comrades from other politics and our countercultural explorations, and others not so readily categorizable – and together you are all, I fancy, rather like the gatherings of plants, of specimens and artifacts, that they began packing away – which is to say a funky constellation, wonderfully diverse, with such a variety of special and precious attributes as to be capable of entertaining each other endlessly with insights and resonances. No kidding. Seen alone or as a focus, I may seem special; and indeed I am in my way. But subtract me as the transient center of this constellation, and it shines as specially and richly. I know you’ll enjoy each other; and new connections spark new neuronal growth, so precious at our ages.
As long as I’m asking for help, I must thank Karen Wargo for taking giant steps to extricate me from a tax hell in which I’ve been paralyzed for years. Not done, but over the hump; the penalties will cascade, but be bearable. Intermittent followup will be necessary for many months; I’d appreciate references of competent people to do this more affordably.
My new laptop remains plagued by the software disruption that so disabled my web-building efforts in hospital last time. I’ve had futile help, and don’t know anyone affordable who’s really good with Macs. There’ll be enough lead-time before hospital again to deal with this if I can find someone. Independently, my iTunes on both machines are making songs disappear when I ask for them, then sending me on fruitless hunts. Some Mac sharpie must know what to do …
Doubtless I have other specialized needs – besides the big one of dealing with the HealthNet outpatient meds agony sketched in the last installment, which Lucy may be able to help with, but other help is invited –but I’m too wasted to think of them now at 5:16 am. Except for help in getting my website’s components visible, well-linked by others, and otherwise search-engine-meritorious; and in finding print publishers for the FSM and science education books.
Oh, I know; I’ve been going since I started setting out tax papers at 9 am, and this may seem dicey; the preds have helped some, and tea, but really, I’m back in work-mode, and will get to sleep as long as I need once I send this out. I will mention, though, that anyone who has particular interest in going through or living with one or another of my specialized libraries or stashes of specimens or ephemera (posters aside) would find much welcome and some pleasure.
Finally, a bureaucratic note. This is being sent to a newly-compiled address-list. If you receive more than one copy, please email me with the heading “duplicate,” and if the eddresses are different, tell me which you prefer. If you think of anyone who should be on this list – which mainly pertains now to my leukemia blog, but may extend to further website and personal material – please let me know, if your giving them the website and blog URLs does not suffice.
May your slumber be as sweet as mine shall be. May we find Obama triumphant in Texas delegates tomorrow evening, and Hilary bowing bracefully.
With so many thanks,