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Michael · Rossman


Counts, Etc.

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* * *
As virtuous men pass mildly away
And whisper to their souls to go
Whilst some of their sad friends do say
The breath goes now, and some say, no...

This is how Michael left us, at about 2:30 yesterday afternoon.  Surrounded by family love.

From him, among his last days of talking much, and from me, great, deep thanks for all your help, letters, wishes, prayers, and of course Blood! 

No flowers, thanks.  My yard is in splendid bloom.  Any gift you'd care to give would be welcome I'm sure,to a cause you know he cared about,  If you've meant to, but haven't quite gotten to a blood bank yet,please do.  (And please don't feel bad if you're unable to, for any reason.)  The best gift of all that you can give, truly,is to ask friends to give blood in his name.  Preferably, but not necessarily, at the UCSF blood bank.    He took so very much from the supply that it is still an enormous act of love to him to replace some of it.  Who knows?  Perhaps for some who are not already regular donors, it will become a habit.  I get such a good feeling when I go to a blood bank, because it's one of the things in society that is simply and completely for the common good.  Cuz obviously,  it's a supply that one day either we, or someone we dearly love, will desperately need.

We are still putting together love notes to, and now about, Michael.  If you'd like to send one, it's to:  1409 Bonita, Berkeley 94709.  Thank you, too, for those.  Though he just couldn't reply at the end, they meant so much to him.

We'll get back to you when we've got the memorial planned.  Anybody care to guess how many people to plan for?  I can't begin to figure it out...

An apology for not getting this out yesterday.  And a hope that I'll be able to figure out how to send it to Michael's list as well as my own. If you don't get it till evening, apologies, for I'll have had to wait for the tech support...
* * *



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   what springs eternal

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O! the touch of light rain
through my eyes, the apple
blossom refreshed and the
wart-doctor sanctified.
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            Two photos from Marc Franklin   
            1 April 08   
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* * *
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28 March
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Last night's unanswered correspondence

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.In hospital now since Monday 3/24.  Last night’s chain of correspondence from me, no answer yet from Dr. Linker::
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=======================
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Date: Thu, 27 Mar 2008 23:47:09 –0700
To: linkerc@medicine.ucsf.edu
Subject: social and functional problems, the latter of immediate relevance
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Dear Dr. Linker,
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I made a significant nuisance of myself, persisting repeatedly through three layers of personnel to insist that your order -- that the IVIG be started immediately after the second count-sample was drawn, regardless of what that count would thereafter reveal -- be honored, despite my original sense that the rate of degradation of Devora's platelets should be actually measured before decision on IVIG was finalized.
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Finally, word was relayed from the presiding doc that the change in orders came not from others but directly from you, after seeing that amazing jump to 66 (from what, two hours after registering at 6, was essentially a completely empty platelet tank in me.)
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Given how involved I am in all this, and how faithfully I bow and adhere to your orders, it sure would be nice to be kept in the loop when you change one that you have discussed with me so clearly and precisely. No hard feelings; I know you've got a lot to juggle. But when you can, please do, if only to keep me from making such a nuisance of myself.
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Besides noting that the second sample was drawn not two hours after the immediate post-transfusion sample, as I'd insisted to get a clear measure of degradation-rate, but nearly 4.5 hours after, due to problems I won't recount here ...
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... and (hopefully) bare minutes before that result finally gets back from the lab, I offer you this chain of reasoning:
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If my body chews Devora's platelets as it chews others', at 4 to 5 per hour, that second count will show them at 44 to 48, well above your level of 20 to do the IVIG. But if so, as one must assume that at best this is a linear process, my platelet count will drop to 10 sometime between 4:45 and 7:15 a.m., and to 0 between 6:30 and 9:30 a.m. I will know shortly whether this unpleasant prediction is as likely as your original estimate of the likelihood of my body routinely chewing up her platelets. If so, I will need another platelet transfusion very early tomorrow, arguably by 6 a.m.
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So far as I am aware, provision has not been made for this possibility. I sure don't want to be, at 6 a.m., trying to convince people to count me, wait an hour for the count to come back, then order platelets, wait another hour to get them, and so on, with my count at zero and the several unfortunate possibilities of consequence.
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Cordially,
Michael
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========================
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 Date: Fri, 28 Mar 2008 00:08:51 –0700
To: linkerc@medicine.ucsf.edu
Subject: bad, expected , urgent news
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My platelets were 66 at 5:15 pm. At about 9:40 they were down to 45. That's a decline rate of about 4.7/hour. Straight extrapolation predicts  a count of 10 at 5 a.m. and 0 at 7:15 a.m. or so. I'm going to try to talk with whoever's in charge here to take steps to cover me, but if you happen to be awake and could make the call for him to heed me, that'd be dandy.
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Michael
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Date: Fri, 28 Mar 2008 04:11:35 -0700
To: Lorca Rossman lorcarossman@gmail.com
CC: linkerc@medicine.ucsf.edu
Subject: Re: bad, expected , urgent news
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By my calculations, my platelets are at 13 now and due to bottom out at 0 by 6:30 am. After persistence in the face of blind incredulity, I got them to draw a sample for platelet count at around 3 am, which should show me around 18 to 20. It's an hour later now and no word. I'm about to go out into the hall to inquire. Though my words have been precise and laconic, there is of course a radiance of anxiety when I note that the last time my counts were so low I was defecating pints of fresh blood. They'll shudder when they see me coming again.
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Linker left an order that my IVIG was to be begun only if/when my count was under 20. I have been clear and insistent that his order is to be honored; no one has paid me the slightest regard on this. The by-the-book posture is that they'll look at my counts when these come back from the lab, and then they'll think about it. I imagine that if the count comes back at 4:30 as being 21 as of 3 am, they will insist on another count and so on, rather than believing that I'll be well under 20 by then.
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Meanwhile, I've been working on editing the Learning Games book manuscript while listening to the Schubert piano trios, and having a wonderful time. Karen, bless her heart, has actually managed to sleep for several hours now.
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I'll keep you posted.
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m.
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============
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Date: Fri, 28 Mar 2008 05:53:16 -0700
To: Lorca Rossman <lorcarossman@gmail.com>
CC: linkerc@medicine.ucsf.edu
Subject: Re: bad, expected , urgent news
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Dear Pup,

The pace of decline has slowed somewhat; my platelets were 29 at 3 am, the pace having declined to -3/hr the past four hours. It's nearly six, they're starting to transfuse a unit of platelets now; should be around 20 now, 40 maybe in an hour when the platelets are done; down to 10 between 1 and 3 pm, which gives plenty of time for the next steps. I'll sleep like a log till then.
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Love you; sorry to have kept you on tenterhooks.
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m.
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=======================
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Date: Fri, 28 Mar 2008 07:29:15 -0700
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To: Lorca Rossman <lorcarossman@gmail.com>
CC: linkerc@medicine.ucsf.edu
Subject: Re: bad, expected , urgent news
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No clear necessity for you to be you onsite here. even at -5/hr being not due to hit 10 till 1 pm, which should give Karen enough time to secure the next platelet transfusion and get Linker's IVIG on track.
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This platelet transfusion is nearly done (90 minutes!). they'll take another CBC soon. On the brighter side, I am technically not neutropenic as of 3 am, tmy ANC having risen to ~510 then.
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 M
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==========================
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Date: Fri, 28 Mar 2008 07:45:33 -0700
To: Lorca Rossman <lorcarossman@gmail.com>
CC: linkerc@medicine.ucsf.edu
Subject: Re: bad, expected , urgent news
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BTW -- One of my ports has been occluded for most of a day, which is why it took three (or was it four?) hours to pump one unit of RBC at nominal 150 ml/hr with me pushing the restart button every 20 seconds, before they'd consent to drawing my count-sample and then finally after receiving results gave me platelets. Subsequent heparin soak-and-flush, reluctantly at my insistence, had opened it sufficiently to deliver that normal platelet sixpack at 100 minutes by open. high-raised drip. Repeatedly, two different pumps said "occlusion on patient side;" repeatedly, this nurse (by far the best of the people I interacted with during the long evening and night) struggled visibly to pull blood from the port before flushing it, and insisted that her muscular difficulty was just ordinary port behavior. Same scene just now, as she checked the (same!) port after the platelets finally finished dripping.
..
She drew a sample for my next CBC, I imagine it may be here by 9 am.
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m.











 
* * *
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Packing My Books: A Brief Vignette
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and Other News
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         Jonathan Fernandez is on a stepladder, pulling down the six-foot shelf of periodicals and books that contain the fraction of my writing (30%?) that actually got published.  Nearly at the end, among the books, he pulls down a small black cardboard container. “Hey, Black Box!” he says.
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         “How do you know about that?” I ask.  Black Box was a very experimental literary magazine published on cassette tapes  -- two per issue, with poems, stories, songs taped by their authors – funded by the NEA, and published from 1972 or so for a few years. I never met anyone back then or since who’d heard of it, and he was only a child then.
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         “Oh, I think I have the full run,” he said. As he keeps his lights under a bushel, it’s not surprising when an odd one shines.  But what’s really weird about Jonathan is not that he’s a serious archivist -– a metabolic consanguity between us – but that he’s an activist archivist. For several years, he’s been doing historical displays in the street-windows of Rasputin’s, up on Telegraph Avenue, growing steadily more focused, coherent, and ambitious. Though barely fledged, his vision of using emergent technology to transmogrify the entire Avenue into a participant-interactional historical display exposing the local layers from Ohlone time through Berkeley’s founding down through each recent decade is breathtaking. “I’ve been collecting poetry on records. By now, I think I may have more than anyone. Why do you have this?”
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         “It has three of my songs.” I forget how they got into Black Box’s first issue; did I simply read the promotion and send my submission? I never heard a word about them from anyone, never was asked for more, nor offered, anywhere,  “I just put sixteen songs up on my website last night. It would be so nice to have little buttons on those three, so someone could click and hear them sung when they were written,”
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         “I can digitize tapes,” he said. “That’s easy. Though tapes this old, there’s no telling what will happen, they’re ready to fall apart.”
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         “That would be so kind!” I offered my copy of Black Box to him. He smiled: “No, I’ve got it at home already.”
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         My friends boxed 53 boxes of books that afternoon. The next afternoon, when Jonathan arrived, he handed me a CD labeled ‘Michael’s songs from Black Box.’ “It was neat,” he reported, “you could see all the iron-oxide flakes flying off from the tape as it rounded the recording-heads.”
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         Which is to say, that his tape was utterly destroyed. But the digitalized sound he captured was clear as a bell, immediately or with some touch-up. That night before dinner, my brother and sister and my sons and Karen sat behind me as I played the CD’s twelve brief minutes, too full of too many feelings to be able to turn to look at them. One song of dense lucid metaphor, of existential crisis on leaving Karen in 1968; another compressing the entire history of the Sixties into six stanzas  (how I long for such economy!); the last, about awaiting our son’s birth while the world was coming unglued.
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         As they’re AIFFs, averaging 40 MB each, I can’t send them in an email. If someone shows me how to slim them down to sonically-inferior MP3s, I suppose I can send them. What I really want is to learn how to put them on my website as clickable links, in MP3 form or however. If you know someone who could guide me, that’d be so welcome. Meanwhile, I’ve made a bunch of CD copies and can do more at 20 per hour, so please don’t be shy to ask. And Jonathan can have my (semi-)intact Black Box 1 to make his run complete again, along with so much thanks.

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Other News
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         Whee, it so does change, from day to day. Now the next bone-marrow biopsy is scheduled for Tuesday March 25, with flow-cytometric results due a week or two later, to see what that potent Mylotarg did in my marrow . So if I get a next round, as I hope, that probably won’t be until early-to-mid April – a taxing time for tax time :-).  Meanwhile, my liver has weathered it fairly well, with only modest rise in my metabolites, bilirubin in particular. But it sure has slammed my counts. My reds, oddly, are hardly touched; I won’t need another transfusion for some days. But my neutrophils, already in decline from the malignancy’s resurgence, have fallen more steeply since 12 March chemo, and are now down around 350 – genuinely neutropenic territory – so I’m back on high-paranoia cleanliness to complement the stronger, expensive antibiotic (amoxifloxicillin) they’ve shifted me to. OTOH, they’ve given me a shot of Neulasta – very pricy, though not to me – which stimulates neutrophile production, and may actually turn this cell-line decline around.
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         But the line they can’t stimulate is platelets. They were already falling rapidly before chemo, and since then have been falling precipitously. As of yesterday, I began to have platelet transfusions daily. Oy, what a drag! It’s a 5.5 hour round-trip from here to clinic and back, just to have my counts drawn and get one unit of platelets transposed, which is all that they’ll allow. I think I’ve got it timed so that my platelet trough will be at 10k when I arrive early each morning for transfusion, instead of the 6k and 4k of the most recent arrivals, which offer prospects of intra-cerebral hemorrhage.  (My platelets used to run at high-normal, 400k.) They say I’m early in the week of greatest suppression of platelets by Mylotarg; so there’s some hope of getting back to a more-leisurely transfusion schedule by the end of the month.
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         Until then, this business of being sick has escalated beyond a half-time job. Plus I’ve just learned, after finally putting together a killer 25-page presentation about how HealthNet has ripped me off for $4500 by mishandling my outpatient meds, that despite what I’d been led to believe, California actually has no regulatory agency that deals with HMO-patient disputes. They have one for PPO plans; but the industry got the state to back off from regulation of HMOs, on grounds that that was a Federal matter – which of course worked, in the current clime, and of course there’s no available Federal recourse. So I dunno. Maybe I’ll send it, with a brief cover-letter, to Channel 7’s On Your Side; maybe Jaime will shepherd my case through Small Claims court. It’s sure not worth much more of my time.      
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         On the brighter side, the extensive edema that made my feet into swollen sausages no shoe could contain, due to some drug consequences plus all the water they pumped into me in hospital, has subsided almost completely, leaving me feet that looked like feet again when I got married yesterday. But more of that later.
* * *
Medical update; and
Please come help pack my books away!.
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Things are speeding up. My medical destabilization is a motor of destabilization in the rest of life: it’s hard to know what’s going to happen when, how it will feel, and what will come from it.
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Case in point: my second hospital stay. I left you last with my expectation of going into hospital yesterday for a full-scale Mylotarg treatment (9 mg/m2).  Didn’t think it worth mentioning that two such – the standard protocol for this novel monoclonal antibody – produce about 20-25% mortality, mainly from liver damage, to balance a similar proportion of remissions.
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Well, after my hematological team thought about the one report so far that suggests that dividing a standard dose into three 3 mg/m2 doses spaced several days apart produces as much anti-tumor action but significantly less liver damage, Jeff settled on an even more cautious and flexible procedure: I’ll take a 3 mg/m2 dose, we’ll see how I tolerate it, and in a week we’ll do a bone marrow biopsy to see whether that 90/10 balance between my malignant lymphoid cells and Devora’s clean ones has shifted, say to 80/20 – which surely would invite trying that again, and again and so on if I tolerate it well.  We’ll then entertain consolidating measures: encouraging GVD by slacking-off the immunosuppressants and maybe importing some fresh T-lymphocytes from Devora …
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So actually, I went in hospital for the first round last Tuesday, a week ago, and left by Thursday evening.  The brevity was a bit disorienting – I’d brought enough work for weeks, not knowing how long my reactions might take to resolve – but who’s complaining? I felt no side-effects from the tightly-targeted treatment; my labs on Thursday and Sunday showed no notable liver or kidney damage.  My counts had finally gone down enough to require transfusions in the week before hospital, for the first time since I left it in November; but there’s not much sign yet that the Mylotarg has made this worse. Today in clinic I’ll learn more about that. My marrow biopsy will be drawn on Thursday and hopefully well-enough analyzed by Friday so that Jeff can plot next steps with me, before he goes off to Machu Picchu and the Galapagos with his family for two weeks, leaving an adequate team to cover me.  If more Mylotarg installments are due, it seems I may be able handle them in clinic visits rather than going into hospital each time.  Whee!
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And the gross edema that suddenly fattened my feet a week before hospital hydration plumped them further has receded sharply, courtesy of lasix and a lowered prednisone intake; and the lowering of the preds hasn’t brought GVHD symptoms back yet, I’m still eating like a pig and running on a lot of energy, getting a lot done. So as a medical case, I’ve been having a dandy time since last I checked in.
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Every feature of this description is subject to sudden reversal, of course, but this is how it’s been seeming and feeling.
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As for the rest of life,  I’d appreciate your material help again.  The  Phase I farm-out-my-plants project went very well; there are only about fifty left inside, awaiting hosts. Please don’t be shy; orchids will grow for ordinary people as well as for the rich.  Many easy small philodendrons and other oddities are still available – and oh, the huge philodendrons! Lincoln took the one in the living-room, but who has space enough to handle one of the two remaining in the den?
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Phase II is PACK UP THE BOOKS! to free up the rooms for renovation, so I can come back home. I’m hoping that you can come by to spend a couple of hours packing on Wednesday, Thursday, or Friday afternoon during this week (only). At the moment, we’re figuring the time from 4 to 8 each evening as open-house for this. Just dropping in would be fine – but if you have an idea of when you would prefer to or could come, and send me a message with the header “book timing”, that would help us plan. We’ve gotten 160 uniform banker’s-boxes, which should hold >3,000 books small and large. I’m printing large labels, so the different libraries can each be put away in fairly-well organized form for whatever transpires … My brother Jared, sister Devora, and son Jaime have all come here to help organize this project (and others); and I should be able to be present in my mask for much of the time, and would dearly like to be among you during this, as we talk about books and time and auld lang syne and what’s coming next ….
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=========================== 
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About other help: I must thank Oliver Johns especially, for so many hours in bringing my new laptop, which so mysteriously malfunctioned in hospital, into a new state of health I can depend on. And – talk about specialized teams! – Lucy Johns has gotten me to conclude a 25-page presentation of my long ordeal with HealthNet re outpatient meds, and is holding my hand through presentation to a state regulatory agency that’s sounding as if it may actually do something.
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Among other specialized needs: I have a book in manuscript about learning games, which still seems the most important pedagogy (developed collectively) that came from the higher education reform movement from 1966-73. I want to make it available at least on my website. It can’t be  digitized by OCR; it must be retyped. If a dozen people were each to take a dozen double-spaced pages, I imagine two to three hours each would leave me a corpus I could readily work with.
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That my website keeps growing in breadth, depth, and variety is a pleasure; that hardly anyone looks at it yet matters little to my patience. Next time I mean to say more about the familial, personal, emotional, and spiritual textures of this whole experience, which are quite remarkable;  but you can understand why I can barely get this much out for now, with clinic five hours after I get this in the email.
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More real soon, I do promise,
Michael
* * *
* * *
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Bulletin Update Bulletin
 (so soon!) 
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Please bear with me; this is complex.
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    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.
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*****
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    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.
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     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?
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       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.
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       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.
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       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.
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*****
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       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.
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*****
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     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!
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     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.)
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     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.
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     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.
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     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.
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     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.
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***** 
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     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.
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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 …
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     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.
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     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.
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*****
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       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.
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       May your slumber be as sweet as mine shall be. May we find Obama triumphant in Texas delegates tomorrow evening, and Hilary bowing bracefully.
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         With  so many thanks,
           Michael














* * *

michael 2-08 by marc

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2 March 08

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Phase I, Phase II, Phase III already, oh my!
A resume, an update, and an urgent invitation …

         Ah, well. This crisis catapulted me abruptly into the new millennium: by Halloween when I went in hospital I’d acquired a cell-phone, an iPod, a laptop, a blog, and a website. I’ve been writing on computer since ’80, but all these were novel to me, an entire environment I’ve been exploring timidly ever since. Even so, I remain a nineteenth-century English essayist – my literary friends will smile, but that’s how I came out. Just look at the website – www.mrossman.org, please do – and you’ll see the how baldly this shows, before my graphic friends come to help me hide my prosaic nudity.

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         Which accounts also, somewhat, for my wretched performance as a blogger in modern terms. I’m so sorry to have stiffed so many of my friends who’ve looked over so often, in dwindling frequency and hope, for timely updates. Partly, the long intervals have come because I’ve had more to manage than I’ve been able, so that the easy twist of self to sit down and push a few thoughts into the aether hasn’t come easily at all. But more deeply, I think, it’s been because I’m the sort of writer I am, reflective and discursive even in the heat of haste. It sure takes me a while to get cranking; but when I do, I do. So I will bring you up to date, in a voice growing perhaps more strained as it goes along, not simply because it’s 5:39 am already.

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Phase I – Days 20 to ~75 -- Recuperation

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         So I left hospital at November’s end, having had a relatively wonderful time with everything but internet connection, a poster-boy for stem-cell transplant – and entered not so much upon convalescence as on recuperation.

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         The chemo hadn’t beaten me up much, or so I felt. Its main sequel was an amazing delayed attack of Red Scrotum Syndrome, more hilarious than painful in my case (though the list-serve for sufferers from other causes showed how lucky I was). By the fourth day, the itching had subsided; the precisely-demarcated Bushman pigmentation ebbed slowly over the next month; and the persistent clamminess – such an odd feeling! – is way lessened by now and still slowly ebbing.

     .

   Meanwhile, I was settling myself back in at Karen’s house, in two roomy rooms with a shared kitchen, and complex negotiations of space, affection, and (in)dependence. My own place, as it stands, is presumed to be a death-trap, not only from its 150 plants but through decades of strata of biological specimens and dusty literature – in particular, due to the threat of mold – not the sort that inspires normal fears, of florid dark growths releasing toxins into the environment, but one single spore floating on the wind …

      .

  I should explain. Though I came out of hospital with a fully-functional blood system from my sister, all cell-lines ramping up towards normal production, I was still on a strong immunosuppressant, Prograf, to control the GVHD. Now, HVGD is host-versus-graft disease: you get a heart transplant, your T- and B-lymphocytes attack it as being foreign, reject it. But when you transplant someone else’s blood system, her lymphocytes attack you as foreign, that’s graft-versus-host. So the Prograf works to disable Devora’s lymphocytes so they don’t chew me up too badly. The idea is that after some time they’ll learn to be more accepting, though they can never be trusted eventually not to throw fits of bad temper when stress insults them, or just for fun. The program was to start tapering off the Prograf after Day 90, if all went well. But meanwhile – and even to the end of a 90-day taper thereafter – my disabled lymphocytes will leave me somewhat vulnerable to bacterial infection, and even more to viral and fungal ones.

        .
       Imagine a single spore of Aspergillus wafting from a joint or vaporizer into the tennis-court-sized space of my lung-surface: dark, warm, moist, nutritious, prowled vigilantly by T-lymphocytes packing no armament … then think of what you’ve found at the back of the fridge, and shudder. So my handful of morning meds on an empty stomach includes an antibacterial, an antiviral -- and the antifungal Vfend, at the dose-level they use to treat an especially severe infection, here simply to fend any off, at $150/day when I pay for it, a sore subject I’ll come to.

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         I can’t complain about the costs themselves, though. I’m on Medicare, and UCSF manages to tame my supplemental HealthNet HMO completely for everything but outpatient meds. The result is that I haven’t paid any of the $317,000 bill for 26 days in hospital (nearly half for the drugs!!), nor more than $1000 in copays for the total tab of ~$420k to date. All else I’ve been stuck with is some $10k in outpatient meds, due partly to HealthNet’s determined fucking-up – but hey, cheap even at this price, right?

    
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    So I’m sort of in balance about that. What’s been harder is taking my pills on time, no kidding. The anti-everythings, the immunosuppressant, the one to lower the blood-pressure raised by the immunosuppressant, the five to supplement the magnesium leached by the immunosuppressant, the one to make sure the stomach doesn’t get irritated and tempt GVHD. Mornings are easy, I just gulp and then wait to eat. But they’ve got to be taken at least an hour before or two hours after eating – which is easier for people of regular habit, but hard for an habitual browser who gets absorbed in his work and munches absentmindedly … o, consciousness! consciousness! I’ve missed only 3 of 180 times so far, but it doesn’t get any easier, even with Karen riding vigilant herd while she’s here. But how fine it has felt, to be cared for so – to be reminded when I stink and should change my clothes, for I’m anosmic and can’t smell; to have them reappear magically cleansed; to chow down her favorite pastas until I grew avid to cook up the oxtails and lambshanks she loves; and so much more.

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         Yet the hardest thing for me has been to learn to be careful. In this first phase I re-entered the world joyfully, lying around for a few days while finally getting the hang of using Dreamweaver to build my website, and then beginning to venture outside – outside! after a month huddled in that cell hooked to a drip-pole! outside again. I couldn’t go into anyplace where there were lots of people, but I could walk anywhere, as far as felt good,. And I could hug dogs, if not kiss them, and could hug my grand-daughter again if she weren’t sniffling. So Amy, Barry, and other friends began to take me for walks, or ambles, short ones, growing longer, somewhat brisker, as we talked. And I stopped to hug dogs, and dared to pick a lemon, and even to buy pippins with a mask on at the little produce-store on Shattuck when it was near-empty.

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         But forgot to wash my hands immediately I got home. Oy! I can hardly express how hard, or rather how weird, it’s been. I have spent an entire lifetime thrusting my body energetically and somewhat heedlessly into the world. I spent decades teaching children why it’s safer to eat a spoonful of dirt than to kiss their mothers. I eat food off the floor, kiss dogs open-mouthed. I believe my skin sings gladly each time it’s scratched with a bramble, stabbed with a splinter, because healing small hurts is what it does best and it’s as happy as a border collie set to work. And now, abruptly, I’ve had to learn: don’t poke, don’t cut, don’t bruise, don’t turn over that rock, don’t kick those leaves aside. Don’t go into a bookstore, don’t pay for the gas without a mask, wash whenever you touch the outside or another inside. And I only manage some of the time. And still my hands look sooooo weird. “Look, see anything weird about my hands?” I’ve asked a number of friends. “They’re shaking a bit?” some have said politely, Well, yes, from the Prograf; but not one has noticed what’s really weird. My hands and nails are clean, for the first time since I escaped into the outdoors at two years old. I’ve been up to my elbows in the world; and now I don’t touch enough to leave a trace. Boy, when I get a fully-functioning immune system again, I’ll be able to scrape worms from the gutter-mud to feed the axolotyls on my porch; my hands will look like noble members from a Neruda ode, with scabs on the knuckles from where the wrench slipped … ah, yes, all this is promised to me eventually …

   .

     But I’m not complaining, not really, just having fun. Because I have a very clear and deep sense of proportion and gratitude: hey, this sure beats the alternative! To walk with my friend, to romp with my grand-dog, to hoist my granddaughter, to watch The Sopranos session by session cuddled with Karen, to follow the primaries. And to work on my website.

    .

    During this Phase I, I finally got Dreamweaver to work smoothly, and gained some very modest chops, doing most of the grunt-work that’s visible online, and adding to it since. By now, I’ve put online two new books, a fair piece of a third, and enough more on other topics to amount to another; and two of my four earlier books, with the others to come; plus a passel of poetry. How enjoyable it has been, to bring old finished work to light again; to bring together long-gathering thoughts and see them meld into coherent works; and to begin reaching forward in present time to extend these inquiries alive. And also to have all the links work! And to begin to cross-link things!

 .

       Really, it’s being a modest kind of apotheosis, internally at least – though one might also think of it as a kind of solipsistic masturbation. Because one writes to be read; and who’s going to read what I write? However accomplished, witty, insightful, historical, elegant, and occasionally entertaining it may or may not be? When I was young, I believed that creativity was everything, and salesmanship was crass. I’d hardly got to half this old before I grasped how mistaken I was: creativity’s as common as quartz, as abundant as unexpressed; but what really matters is how to connect it, how to *promote*. A profound illumination; but I’ve hardly learned anything practical since.

   .

     So here I am with this plump wordy website, completely deficient in the cosmetics of this era – aware that I need to be soliciting sites and people who advise other people what might be interesting, to look at what’s on my site; knowing that I should make “favorite link” lists of sites that relate to mine and ask them to return the favor; that I should be gathering relevant emailing-lists; that I should be embedding invisible references attractive to web-bots … and of course all these complications are multiplied by how many different subjects my site is concerned with, which is just the (partial) record of an adventurous intellectual life. Oy! It’s no wonder that when I turn to work on it I defer even looking at this complex frustrating interface of potential connection, instead putting yet another essay online or adding some graphics to a poster essay, things I know how to do or am actually learning …

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         If some friend were to send me a list of ten people to notify or sites to solicit about one focus or another – or themselves notify or solicit ten – what a sweet modest mitzvah that would be, for a tough independent guy who can’t hardly begin to help himself.

 .

       So it’s been a relief to turn away from the cloistered hours with Dreamweaver and such promotional yearnings, to get Out Of The House and wander modestly. December was low on rain, I got out often, even venturing to the Albany Bulb, my first walk on uneven ground in two months. When my old friend Carla Sundstrom came at month’s end from Sweden to visit, we played classical flute duets for an hour nearly every day, while she gently instructed my so-lame lips in better embouchure -- ambrosial! -- and then went walking. The high point came when we spent three and a half hours trudging up and down the slopes of Wildcat Canyon looking for mushrooms – at hardly half the pace of a normal quest, but by far the most work my body had enjoyed for months. Oh, how I yelped with pleasure, I couldn’t contain it, free in the open again! My legs didn’t even hurt the next day, when I took her for a two hour stroll introducing her to the rich artistic maze of the Bulb – though my knees were a bit creaky going downhill, and my calves ached a bit that night. We just went shopping in town the next day; but the next, we went over to Muir Woods and climbed the Dipsea Trail a ways to a ridge, where we watched the sun setting and remembered how it had been growing up together there in Marin County, and had to tear down the steep trail in time to rescue my car from being locked in, or so we mistakenly thought …

 .

       And oh, did my legs and knees ache for days and days, it took a week to do better than hobble, while Karen brought warm bean-bags from the microwave, rubbed odd unguents into my stringy calves. I think it was during that week that I went into my house with a HEPA mask, to get some posters to lend to Kevin Chen for an exhibition at Intersection for the Arts; and instead of having the wit to ask him to pull the heavy portfolios out of the cabinets I pulled them out myself, wrenching my back as I had done not once but twice during the previous year, sending me again to my deft chiropractor Dyanna Anfang, who restored me over several weeks with knowing hands and a knowing smile.

      .

      And oh, how wonderful and joyous it was, to ache so in my legs and back, to hurt myself in and only by the process of being myself in the world again!

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=================

        My friend Gary Horvitz sends me another poem:

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Bone Marrow Transplant

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your newfound blood stories

tell me the sterile version --

how you charted your own death.

such a discrete demise.

neater than the real thing.

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you were induced to slip out

on that lean glassy beam

beyond safety.

where faith and science curl around

each other in tortuous passion

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the slender promise of rebirth

balances on an edge

between simple loss and mindful

dissolution.

today the left hand knows

what the right can only imagine.

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a stream trickling into a snowbound lake

resting enough in the

chrysalis of time to know rock and sky


and the most secret harbors of life

flowing out to live

as the weight of your next step.

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=========================

 

* * *

Phase II – Days ~75-112 – A Touch of GVHD

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           But then, there was the matter of my counts ….

        .

       I’d been getting comprehensive blood-cell-counts since well before hospital, of course. Once in, metabolite counts were added and the frequency multiplied as they tracked me through chemo and the subsequent plummeting of my cell counts, and the zig-zagging of my hematocrit (red-cell equivalent) and platelets as they pumped me with transfusions that disintegrated too quickly until the un-transfusable white cells had nearly bottomed out … whereupon, my new neutrophils began to kick in, and then the platelets and red-cells fell less slowly, started to steady as production resumed … o, that was so nice to see.

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         And all along, I’d been making my neat not-so-little graphs in four colors of pen, tracing the declines, the zigs and zags, the hoverings. And drawing more than a little irritation from my hematologist, because I persisted in wondering why one transfusion of two units of reds only raised my hematocrit by three points whereas the previous two such had averaged five apiece; and so on – leading him to remind me, with increasing sharpness, that there was much more variability in such matters than anyone with no clinical experience might assume, plus a lot that just wasn’t understood. Not to mention that he had so many patients to cover that an innocent gesture towards a red line’s wiggle was like screeching chalk.

    .

    Granted, every point. And moreover, the unacknowledged error-ranges in their so-neat decimals on paper were quite large. So I just shut up, though underneath I knew for sure that even given all this, the colorful curves that kept zigging and snaking down my graph-paper spoke biological sense more vividly even than the accumulating numbers. By the time I left hospital, my neutrophil count had boomed past high normal to 7,000, courtesy of a pricey Neulasta shot, and then fell and steadied at half that, just fine for a real person. My abysmal platelets (or Devora’s) ramped up production steadily, peaking over 180,000 by early January – half what I used to pack when my cuts closed instantly, but better than lots of folks on the street. And the red cells were coming on line – my hematocrit was staying roughly stable, which meant that already as many were being produced as were routinely disintegrating – I was coasting at Hct 34.5, well above the Hct 27 with which I managed to climb Majuba Mountain in Nevada and lug down great chunks of malachite breccia two months before hospital, that I felt more than robust enough to romp in Wildcat Canyon, and looked forward eagerly to the red line’s gradual climb to the Hct 45 or so of normal oxygenation.

    .

       Only it didn’t climb. It just wiggled around between 32 and 34, and then 31 and 33, 32 and 30, on through January. “How come it’s not rising?” I asked every now and then. Oh, the reds are slower than any but the lymphocytes to really get to multiplying, they told me. “And the platelets, they’re down to 120k?” Oh, the platelets jump around a lot, they said, which I did know already; so I watched benignly as they bounced around to the high 90s, the low 80s, kept gracefully declining. They sure do have a lot of clinical experience to judge by, I had come to trust them on that score and still do. But transparency is another matter; and let’s face it, what physician is eager to share all his possible surmises, even with a patient as smart, open, relatively-balanced, information-hungry and genuinely appreciated as I know Jeff sees me?

 .

       Meanwhile, I went back to walking after my legs healed up, a bit more circumspectly, and played more flute when Carla came back in town, connected with Anne, saw loved ones some more and romped with the dog – though I put off most invitations for walks because I was still cranking away on the website, just hitting my stride. It was rather like old times, wrapped in the flow of work, tedious in its detail but so satisfying as bulk gathered to coherence, breaking for tea regularly but sometimes forgetting to eat, and then more often, until I realized that I’d eaten hardly more than two day’s food in the past four days, and that Karen had been righter than I’d realized in enticing me to more. And I tried to make amends, and realized that it wasn’t just normal work-distraction, but that my always-so-robust appetite had flagged. And that I really didn’t feel so much like working at the screen that afternoon, let alone calling Ricki back to take the walk she offered, or going off with Anne. And the fascinating primary season was already in progress, and me with a cable TV for the first time getting to watch Oberman on MSNBC, and Hannity on Fox – what fun! – so there was plenty of reason to lounge on my waterbed with Karen and sip smoothies till 2 a.m. And all the next day. And for two days more I lay there, so afflicted by lassitude I could barely stir myself to go pee or to squeeze out the yard-long “soft ice-cream” coils from the magnesium-supplement-softened feces in my rectum. And without appetite, utterly, for the first time in my life. It was quietly astounding, like going suddenly deaf. Not to mention the stiff distension and pain gathering at my liver’s margin and spreading across the abdomen.

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         By then, I had a pretty good idea of what was happening, from my reading, and called to tell them so; and they called me hastily into clinic midweek rather than wait till Friday, to take my counts again and confirm: yes indeedy, assuming we can rule out stool infection (take sample) and this and that else, well, you’ve got a touch of intestinal GVHD. Which we’ve really been waiting and hoping for, because it means Devora’s T-cells are probably active not only against my gut but against whatever remnants of malignant clone may have survived in my marrow after those 21 rounds of chemo. So it’s really a good thing.

 .

       Okay, I agreed; and felt moreover: this is a breeze, compared to the variety of gruesome GVHD experiences I’ve been reading about on the BMT and GVHD list-serves where I've been lurking daily, fishing out snippets of useful advice about such various matters – more practical, I imagine, than many clinicians can offer – in case one or another does come along.

     .

        So Jeff sent me home with a script for Prednisone, 20 mg/dy. Though I squirmed at the thought of oral steroids that eventually turn bones to mush, this was short-term, and I sure did want to eat something. By the third day my appetite was nearly back, the liver-pain nearly gone, and I was back working on the website. A week later, he said that the GVHD seemed under control, so I could taper the preds off over three days. Instead I took a week to do so, in paranoid prudence. And started walking again, a bit tentatively now, and went home with the HEPA mask to work on a display of posters for the Berkeley library, inspired by my friend Arnie Passman’s fervent organizing of a celebration of the fiftieth anniversary of our beloved Aldermaston peace-symbol. Drove by myself for distances for the first time: into Oakland to scout posters; to Montclair to lunch with Jonathan Fernandez, the marvelous activist-archive; over to Olema to hang out with my son Lorca in his own ambiance, instead of the tight tension of the critical clinic visits he always companions me in. Ah, how so fine.

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         Though eat as I would, my weight stayed down around 137, six pounds under the 143 I’d so happily emerged from hospital with after melting away the 14 pounds of dangerous fat I’d been carrying around my middle for too many years (minus a few pounds of lost muscle-tissue from my inactivity.) And my platelet counts and hematocrit kept gracefully declining. And my appetite flagged, and with it my will to work, and as I watched the pundits parse the latest primary rounds my abdomen grew tender and then painful again.

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         So it was whisk! over to clinic again for a midweek visit, instead of the normal Friday round-trip that averages five hours to get my blood drawn and a twenty-minute consult when I’m lucky. Karen’s been so patient, so constant and deft in her chauffeuring me through the early-morning commutes, so content at feeling new neurons grow as she graduates from the Monday Times crossword to the Tuesday and ventures beyond, in between watching to see that I’ve told them all I’m likely to pass by, and asked them all that matters. This time it took longer, they did my fourth bone-marrow biopsy since the transplant, to see what was going on inside. It may seem a tad barbaric to go in with that big needle through the iliac crest to secure a core. But in the scale of life’s indignities, that’s not such a big deal, and I was delighted to learn that NP Cheryl Breed, the only one I’ve found there who knows much about GVHD, had also the relatively-gentlest touch of the four who’ve violated me that way, and push of Demerol was just enough so that I hardly quivered while joking with her throughout, yet wasn't groggy for hours thereafter. And she got bone-spicules out for the first time! Rather than only a red fountain as before, which sure beat a dry well the previous time. And sent them off to stew in a lab for weeks, to get the first cytogenetic report since the one before hospitalization that told us all how fucked-up my malignant clone was and why full-intensity chemo was for sure the way to go.

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         So Jeff seemed relieved at this definitive diagnostic – slack off the preds, the GVHD comes back – and seemed relieved also to be able to explain that he thought it was probably the GVHD coming on since January that had inhibited my red-cell rise and caused the persisting, accelerating decline in my red and platelet counts. Okay, it’s nice to know that something’s responsible for that, I thought. Until Karen asked me naively and pointedly why Devora’s T-lymphocytes would be active against her own developing erythrorocytes and megakaryocytes. I couldn’t really think of a biological rationale to reassure her, but was (over-)ready to concede that they knew more than I might imagine.

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         So after transfusing me with two units of reds for the first time since hospital, they sent me home with another prednisone script, 60 mg/dy this time, let’s hope this also reverses the decline in my counts. I winced, asked for a bone-density scan to establish a baseline before further deterioration, and doubled up on the 500 mg calcium citrate tabs, belatedly adding 1000 units/dy vitamin D for better absorption. Sure enough, the preds knocked the GVHD symptoms right down again. I was eating ravenously as Obama was clobbering Clinton in a string of primaries. As Jaime had requested, I sent round his earnest wise letter in support of Obama; and found myself reading Becky O’Mally’s editorial for Obama in the Daily Planet with easy pleasure until the third column, where she quoted his letter entire, bringing me to grateful tears. How finely he’s doing up there in Olympia, after earning his spurs at Go, gone back to school in public administration with a policy focus, pumping out papers worth every compliment they receive, organizing an Obama precinct team, supervising polling, his first real launch into the world he made himself for. And how fine and fitting for his energy to resonate here in his hometown.

 .

       And me, I was getting back on the hustings too, in my way. I’d already dared to attend a modestly-crowded “seven artists screen-print their posters live” event at a small gallery in S.F. highlighting a memorable dense political poster exhibit that was touring, to gather work for the archive and network vigorously despite my mask. And on Feb 20 I ventured downtown to the celebration Arnie Passman organized for the peace symbol anniversary. Gosh, it was mellow and warm – there were hardly any kids among the fifty or so over-fifties there, but what fine company it was, as we took turns reading and singing. Hali and Randy played, Wavy Gravey read from his book – how odd, to hear it now as as modest traditional culture, rather than joyously outrageous! And a dozen more, and Arnie’s fine history of the symbol, and even time for me, though I wasn’t on the program. I read the two Lao-Tzu translations about war that you’ll find on my website; and read “War Games” (there too) for the first time aloud – it’s a quietly killer piece, despite being also an unselfconscious portrait of the poster archivist a few months before he became one consciously; and I could hardly get through the tears at the end, that remain as fresh as those I spilled while writing that ending three decades ago.

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         But what pleased me most, I do confess, was what came to mind to keep Arnie from introducing me to those who didn’t know me by sight. I suppose my name travels more than I know, but I’ve been so comparatively a recluse for thirty years, coming out in cultural public so seldom save at decennial FSM festivities, that I can’t recognize even a tenth of the players in my own cohort, let alone among younger folks. So I stepped up to the mike, pulled down my mask, cocked the cap back on my still-baldish head, and said simply, “Hello. I’m Michael Rossman, back from the dead. At least temporarily. As we all are, right?” – before explaining about the poster exhibit, and sharing the soft knives of Lao-Tzu and my own heart.

.

         Ah, poetry on the hoof! I wish I could be that concise and punchy once every five years or so. It made up for the sleeplessness that night and next, for the prednisone tends to wire one with strange energy, and it took awhile for me to learn to nibble enough Ativan to sleep through the night. Still, even that wiring was useful, as I plugged on for a day and a half, with only a few hours’ nap, to digitize the entire text of Winds of the People, my dramatic documentary of the Spanish Civil War, and fully expand the anthology of translations that provide its body, and put them all up neatly on my website, with even a rudimentary jpeg of the book’s cover, and all the individual poem-links working. Look, I’m learning, I can do these simple neat things!

   .

        But this strength doesn’t compensate for the meds fight. God, I can hardly bear to mention it. After getting my first round of outpatient meds from the local pharmacy, I went thriftily to order them through HealthNet’s mailorder pharmacy ExpressScripts, and found myself plunged into a living, debilitating hell. To make it brief, focusing on the main pivot: I have in hand HealthNet’s statement of Benefits Received for 2007, which says I was sent a three-month’s supply of Vfend (~$13,500 street value) on December 31, which of course would carry me till April Fool’s Day, and on their nickel to boot, with only a 5% copay. But ExpressScripts never sent it, because HealthNet never approved it, at first because it had slipped down the cracks during a system-management software change, and then because they decided it was too early to reorder after ordering it in December or on January 8 or whenever, even though no order was actually carried through.

 .

       Since Jan 3, I have been on the phone no fewer than 25 times with HealthNet, for an average of two-and-a-half hours each time – not to mention nearly as many with ExpressScripts nearly as long, half as many shorter to Elephant, and driving my hematologist’s chief nurse (who spends 70% of her time dealing with such fuckups for 100 patients) particularly nuts – each time speaking with a different person, patiently explaining the whole endlessly-concatenating chain of fuckups and apparent resolutions betrayed by further arbitrary fuckups and so on … each time a different person, persisting through them to a different supervisor who still can’t quite get it … and so getting last-minute authorization for four emergency refills at Elephant so far, this last one due to run out this Friday, with me back at square one as to what to do next, and four grand out-of-pocket so far for the Vfends they should have sent me in December, on top of five for last year’s “doughnut hole.” And I have been so calm, so kindly, so patient every time, that Karen who has overheard so much of this is quite amazed, as she or anyone more normal would have blown it by the third or fourth time. And it took me till mid-February really to grasp what a strain, what a drain, this has been upon my system – how unhealthy, in a word. Literally, it’s been a quarter-time job for the past two months, even to get them to approve the emergency refills; I don’t know who else can handle it as it lies. I know there must be some way to get more leverage in the situation, I’ve been told that my friend Lucy may be able to help; I haven’t been able yet even to summon the energy to call her and explain and ask, it’s been soooo draining and demoralizing. And I’m strong and smart and well-informed and persistent, and I wonder how the average suppliant can bear it.

.

=======================

       .

With intuitive timing, my friend the remarkable poet Lorna Dee Cervantes sends this, dated 2/27/08:

.

The Recovering Rockhound Dreams Remission
.
He dreams of crystals as big as his chest,
a super-mall of captive light working
a rare and lightening magic: amethysts
as large as bottled ships, slabs of serpentine
flaking into scales as big as floor tiles,
aquamarine seas of watery mirrors and rainbow
cavalcades of tourmaline headdresses.
.
What would it take to enter there, to buy
all the stock in hand? What would I do with all the hematite
I could carry but could not lift? Where would I put these sterile
globes of rose quartz, these ancient spears of fission ash?
.
All around him is a light-show, kaleidoscope of fun
perspective, minute facets of knowing, experiments
in receptivity, dual points of view for the asking, hard
products of the quest, the desert's canyon horde.
Every probe, an opening. Every opening, a dripping
stalactite mound. Where would I put the feet
to hold this massive rock, these jagged ridges
in the clusters' sway? Serious enough to crush
a man. More precious than money's worth, a man
who sparks when the lights go out, who refuses
to go - that one vein yet uncovered, that extends
into the family of man, a geodesic harmony
of connections, fugue into living. At dusk
.
the exploration begins, a dusting, a delicate
operation that could last a lifetime
save one.

.

=============================

.

* * *

.

Phase III – Day 113 onward – Relapse

.

         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.

.

         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?

.

         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.

 .

       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.

.

         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 …

.

         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.

.

         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.

.

         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.

 .

       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 …

.

         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 …

 .

       … 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 …

 .

       … 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 …

 .

       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.

.

         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?

.

         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.

 .

       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.

.

         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.

.

         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

* * *
..
     Even a Stuck Clock Is Right Now and Then
.
.
 When the leaders say things will be fine
 if we go on smiling,
        it's time to worry.
.
        When they say keep
        calm don't run for the exit,
        it's time to hurry.
.
        What goes round comes around
        again as everyone knows
        though we forgot.
.
        Castles of smoke,
        the ground bled dry.
* * *
* * *

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