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. 2 March 08 . Phase I, Phase II, Phase III…

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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.

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   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 …

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  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.

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       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 …

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     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.

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    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!

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       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.

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     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.

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       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 …

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       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.

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      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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On March 17th, 2008 09:24 am (UTC), (Anonymous) commented:
I have had the honor of being one of Micheal's nurses. (Yeah Mike it's the big guy from Idaho.) Although not as elequant with words I must say Micheal is one of the reasons I became a nurse. Not only is his individuality captivating, but afresh with new insight. My patient's enable me to garner different peoples cultures, diversity and plane old story tellen. I am compassionate to my patients as they give so much more to my own individualism to learn, nurture and in the end decifer my own individual perspectives. To me it is the Human factor that I relish more than modern medicine. And even though great advancements have been made in treatment. Healing could not take place without both interactions.
Therefore Micheal I leave you with this. A man cannot truly find happiness without dispair. For only in the face of despair can a man find the true soul of the man he is.

Every morning in Africa when the sun comes up the lion knows that in order to survive it must outrun the slowest of gazsels.
Every morning in Africa when the sun comes up the gazzel knows that in order to survive it must be able to out run the fastest lion.
The moral of the story Micheal is this. Really it doesn't matter whether your a lion or a gazzel whe the sun comes up you'd best be runnin.

Best of luck with your recovery!!! I neverforget a face
Duane USFC nurse
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