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* * *
About the Blood Stem-Cell Transplant Center Known as 11 Long
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(An Assessment through the Experience of Michael Rossman)
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       It was not until late in my stay, just before my release, that a gestalt impression condensed from the individual droplets of my experience. In effect, I have been a test particle as well as a creature, passing through a massive functional machinery, subjected to its complex processing.
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      From the moment my daily tests recorded the first credible rise in my neutrophil counts, a phase-change radiated through the machine’s functioning, like a glad spasm through an organic being. A small legion of functional specialists surrounded me to attend to the many factors of my discharge, preparing my transition to post-hospital recuperation. Some were familiars from my ongoing treatment, shifting gears abruptly to prep me for this next phase. Others were new for new purposes, like the pharmacist tutoring me in the rigorous schedule of my eight initial medications, and coordinating the contract between my HMO and my chosen pharmacy. One functioned with pinpoint precision, simply to arrange my teaching-appointment with the home-care supply company that would deliver my intravenous electrolyte replacement, packaged in a way the hospital was not prepared to teach me to use.
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       This abrupt sense of a comprehensive, coordinated machinery shifting gears catalyzed the latent impression of my whole experience as having been through such a mechanism. This of course was obvious, I could have described it so from the first, or predicted it – but I did not actually feel it consciously until this moment of transition, and then the feeling radiated backwards to illuminate the whole of my experience. By then, I had been tended directly by nearly one-third of the sixty-five nurses staffing this floor, three of the six hematologists rotating in charge, two nurse-practitioners, a clinical nurse specialist (aka staff sergeant), three food-servicers, two room-cleaners, a leftist Buddhist chaplain and a laundryman, all indigenous to this floor; by a physical therapist, a social worker, a pharmacist, a nutritionist, a chaplain minstrel team, and two volunteers delivering my daily paper and offering beaucoup services, all serving broader domains; and behind the scenes by a battery of routine and specialized laboratory workers, pharmacists, billing-agents and administrators,  and doubtless other specialists unknown to me.
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       All this was necessary to conduct me through a month-long process of being preemptively killed and then brought back to life – involving, foremost among other agencies, twenty-six drugs – myeloablative, immunosuppressant, anti-emetic, anti-hypertensive, anti-histaminic, antibiotic, anti-fungal, anti-viral, sedative, muco-protective,  antacid, granulocyte-colony-stimulative, laxative, stool-softening, membrane-tightening – and three species of cellular transfusions, administered by precise protocols and empirical responses to my changing conditions, monitored by rigorous panoplies of continual testing, observation, and inquisition, and supported by everything necessary to maintain my tangible body otherwise in adequate nutrition and relative safety and comfort – not to mention conducting my intangible socioeconomic body safely through the bureaucratic and fiscal maze of modern non-socialized medicine.
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       The complexity of this process required not simply a complex machinery of inanimate and human agencies, but one in which nearly every component was itself complexly prepared and functional -- from the machines delivering my intravenous medications with so much more reliability and sophistication than those infusing my son’s chemotherapy a quarter-century before, to the nurses, doctors, and other specialists trained to attend my condition with knowledge and competences at the forefront of current practice – and in which, moreover, these human components were prepared and practiced to relate functionally with each other in accomplishing the machinery’s overall function of saving my life.
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       All in all, what awed me was not only the complexity of this machinery, but how well it worked in practice. So much was encompassed in saying, “My, they certainly have their act together here!” Of course, my experience was a favorable display for the system’s virtues, since my pessimistic case presented so simply and resolved so straightforwardly and successfully. But in view of how it worked with me, I have no doubt that the nature and quality of its operation would have been as complexly admirable in any case beset with more complications, whether the patient lived or died. It’s no surprise, in retrospect, that my preliminary online research revealed the success record of the UCSF stem-cell transplant center to be nearly equal to that of the Hutchinson center in Seattle, the best in the nation. Nor does this stand in isolation, but as one of many factors contributing to UCSF’s claim to be among the nation’s ten top hospitals overall.
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       Yet however precise and evocative this description of the transplant center as a functional machinery may be, it is inadequate, for it neglects a human dimension that is not merely decorative but essential to the machinery’s workings. During my stay here, with no conscious purpose I began in effect to interview  -- my son says, “interrogate” -- the staff attending me, informally but systematically. I wish I had kept notes, for the picture that emerged was as fascinating in individual detail as it was coherent in the whole. In summarizing it, I must scant the colorful personal details of a multi-ethnic, multicultural congress drawn to work here from many motivations, places, and career -- save to note that their collective persona is as vivid and distinctive as any individual’s.
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       In short, what they told me – the nurses particularly -- was this: Cancer care is distinct among the many medical sectors, in ways that invite particular kinds of compassionate involvement. Within this sector, hematological treatment and care is distinct from solid-tumor work, in ways that further this invitation and support specialized focus. Nearly everyone was specific about their reasons for beginning in or migrating to this very specialized field, which offers prolonged encounter with patients poised between death and life, and the opportunity to become truly skillful in their ministry. And nearly every one shared their feeling or opinion that the transplant center here is a very special place.
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       Some said simply that the feeling on the 11th floor of Long is markedly different than anywhere else in this world-class hospital complex. Others with wider perspectives testified to the working environment here as being uniquely collaborative and supportive. No-one offered a clue as to what occasioned the magic that bound them together, as if it simply proceeded naturally from the needs of their special patients. But I expect that other vital factors are involved. Likely one is leadership. I recall the quiet pride with which my first attending hematologist, Dr. Charles Linker, who has been in charge here since 1988, referred to the entire floor in introducing himself: “This is my baby.” Surely the transplant unit is an organic entity that has been well-guided as well as well-staffed and well-tended in its growth. I imagine that others have also contributed vitally to this.
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       Encountered individually, the great majority of my attending nurses and specialists impressed me as being sharply competent and positive, and those in key positions seemed exceptionally qualified and capable. Overall, there were just enough mediocre nurses and outlying consultants to reassure me that my assessments of all were critical, rather than simply grateful. Taken collectively, then, they amount to an outstanding group of workers in their varied fields. Yet this description neglects the dimension of esprit de corps, the moral concert that binds them into organic unity as a working ensemble.
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       This is hard to describe, for it resides nowhere in particular, is rarely visible more sharply than as a general haze of good feeling for each other in their work, an efficiency of cooperation, a lack of petty aggressiveness in meetings. Yet this collective spirit is a substance as tangible in its way as the chemical poisons that coursed in my veins. I can characterize it as the key lubricant that enables this complex machinery to operate so smoothly, efficiently, and effectively; and be well-pleased with this metaphor. But perhaps there is more depth than this, perhaps this collective well of good feeling is itself a healing agency, abetting all the agencies of healing that can be better described and measured. To discount such a notion is arrogant; it is better to be humble in the face of mystery, even with armament as obviously powerful as the machinery that has cared for and saved me.
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       In consequence of this collective spirit embracing all individual generosities, as a patient I found myself treated not only efficiently but humanely, bathed in active concern for my welfare in all regards, and attended with respect as an individual, with distinctive peculiarities and needs which routine institutional treatment would surely have frustrated. In my desires for abundant and specialized information, for reasons and rationales, for a role in processes of routine and specialized decision; in my import and uses of computer equipment; in my wanting opportunity and privacy for intimate relations with loved ones – in all such varied ways, I found myself testing the limits of this system. With each, I encountered no simple acceptance or rejection, but instead a dynamic process of response, first involving caution and resistance; then negotiation regarding the system’s needs and priorities for my care and for its own operation, often enlightening my ignorance; and finally a genuinely bilateral accommodation, satisfying me in a practical sense. Such dynamics and qualities contributed greatly to my sense of being embraced and tended by a warm organic entity.
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       This descriptive summary of a multitude of personal interactions is abstract and stilted, but precise. I was an unusual patient, as distinctive and demanding in various social ways as in my unusual physical case (AML-M7), and hardly everyone’s cup of tea. Most came to find me interesting and well worth the extra trouble I occasioned; but many did not do so instantly or automatically, and I think some never did. Regardless, the individual peculiarities of my case serve mainly to point up a general conclusion regarding this mechanism’s flexibility, its ability to accommodate a variety of individualities in the process of dealing with their commonalities of purpose and need. In such regards, I have been a trial particle, identifying and testing the properties of the system’s operation in social dimensions as well as in its overt, central mission of physical healing. I can hardly express how grateful I am to have found it so competent in both regards.
* * *
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[A brief update]


It’s Day 48 after transplant, nearly four weeks out of hospital. I’m alive, bald, and doing well, except for this pain in my pocket where I shelled out four grand for meds, and a clammy scrotum that’they say will improve. I’m taking walks with friends nearly every day, they’re growing longer and brisker. I can’t go to concerts or movies yet, let alone a gym; but I’m cleared to pet dogs and hug my granddaughter, provided they’re clean and not sniffly. Besides watching Sopranos with Karen, mostly I’ve been working on my website mrossman.org, where I’ve put up a whole variegated shitload of prose. (Still no cosmetic face or graphics, but they’ll come.) I’ve gotten halfway able to respond to email messages, so don’t be shy..
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To look at me, with a neat cap on and a shirt hiding the Hickman portal in my chest, you’d think I was the very picture of health – and indeed, I feel so, so much that it’s hard to keep reminding myself that I’m fragile and vulnerable, and about one-third of the way out of the dark woods so far. But my blood system, or my sister’s, is definitely online, producing so dependably that I’ll never need another transfusion – unless various complexities with GVHD or relapse happen, but let’s not fret about that for now. So to all my friends still longing to give blood for me, I say: go do it anyway, someone else needs it. And get yourself put on the Blood Marrow Donor Registry. All it takes is a blood sample to qualify, and so little fuss to give your stem cells if needed that you’ll be as surprised as Devora was. And this ain’t like an ordinary pint of gore – you can really save the life of someone for whom you’re a good match.
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More anon. May your holiday be as joyful as mine.
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  Michael
* * *
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.photo by Marc Franklin, 2007
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        Thanks Giving
(Good News Comes in Twos)
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        Well, that's it: I'm out of here tomorrow, after only 26 days of being leashed to an IV drip-pole in a small cell.  They have killed me preemptively and then brought me back to life, as a chimera. My sister Devora's stem-cells planted themselves in my marrow – still so choked with fiber that yesterday's large-needle biopsy could not suck a drop of fluid, only fiber and bone spicules – so vigorously that formed cells began appearing in my bloodstream by the tenth day after transplant. By this sixteenth day, my neutrophil count is well above the danger line, my platelets likewise and rising, my red cells – or hers, really; there should be special pronouns for chimeras – are slowly coming on line, and all the other types of white cells seem to be flourishing – including her fearsome T-lymphocytes, which would be chewing up my skin, guts, and liver, were it not for the potent Tacrolimus (1.5 mg/day) that holds them in check, raises my blood-pressure dangerously, and depletes my electrolytes so much that I'll be spending hours each day dripping seven grams of magnesium sulphate into the Hickman blood portal dangling nakedly from my chest, until who knows when.
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        This is to say that I'm hardly out of the woods yet. My body and her cells will take a long time to learn to live together, needing such help for at least six months, more likely a year, maybe longer. Drugs will control my blood pressure while we wait to see how nasty her T-cells will be and how soon they might become domesticated. Maybe progressively less Tacrolimus will be necessary, leaving me to taper off the anti-hypertensives and needing electrolyte transfusion only every other day, twice a week, once, till we finally adapt. But so long as this powerful immunosuppresent is holding her T- and B-cells in check, I'll be vulnerable especially to fungal infection, for these are the first-line defenders against it. To smoke a joint is to court death from a mold-spore grown on nutritious bud and sucked into my undefended lungs. My hematologist took special care to tell me about the lad who died that way on this ward. What a nuisance!
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        Even so, to be released from hospital is a milestone indeed, and I'm glad and thankful as can be.
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*****
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        Real though the dangers I still face may be, I feel like a charlatan in brandishing them above. For my whole experience with treatment so far has been of quite different character – bizarre, surreal, a cakewalk, an easy skate over terrifying depths, more nearly a comfortable vacation than the grueling ordeal anticipated by so many of my friends, and by me, to the core.
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        I came to hospital expecting an ordeal of chemotherapy, an unusually slow process of engraftment as my sister's cells struggled to establish themselves amid dense fibers, a prolonged period of profound neutropenia leaving me unusually vulnerable to potentially-deadly infection, not only from visitors and the hospital itself, but from myself as my own worst danger, fecal bacteria entering my bloodstream through a tiny tear in diarrhea-ravaged tissues. I had girded for this as well as I could, my first goal being simply to get out of here alive, not be among the too-high percentage who die in hospital rather than later. I hoped to be well enough to leave by my birthday, December 15. How disorienting it is, to be sprung free in hardly more than half the time I expected, with no price to pay!
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        My expectations about chemotherapy had two roots. One came from deciding, with my hematologist Jeff Wolf, to go through the punishing process of a full course of myeloablative ("marrow-destroying") chemo, rather than "mini-ablative" or non-ablative preparations for transplant. Though these have been coming into fashion for good reasons, we chose the more punishing protocol for a better chance at reducing the malignant cells hiding in my fibrous marrow.  Stem-cell transplants are only recently coming to be tried with people over 55, even with kinder preparation. Wolf's colleagues thought it too risky to try full ablation on a fellow nearly 68, no matter how robust he appeared. He was quietly jubilant when we received the organ assessments – lung exchange capacity still above normal, heart ejection fraction fully 75% -- that convinced them I probably could take it. Me, I didn't care about the punishment, I had my eye on the prize.
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       The other root of my anticipation lay in accompanying Lorca through chemotherapy, twenty-six years ago. Reading up now, I learned that cyclophosphamide (Cytoxan) had only recently been displaced from the most popular protocols for conditions related to mine. I remember Cytoxan well, and Adriamycin too; I only forget which one had him vomiting for a day and a half despite the anti-emetics that stupefied him in between spasms; and which tapered off after only eighteen hours, with the walls of his stomach beaten so violently together that after the third hour small flecks of blood came to decorate each scant upheaval of pale green gastric juices.
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        So I was glad to learn that Busulfan, a newer kind of ablative drug, had replaced Cytoxan as the partner of fludarabine in the "Flu-Bu" protocol Wolf offered me. They told me that Bu was much kinder on the body, which mattered less to save suffering than because less punishment meant less chance for aggressive Graft-versus-Host (GVH) disease after transplants took. They said also that anti-emetics had improved greatly,since the era when the best we had to offer Lorca, after he refused any use of cannabis because his dad was such a pot-head, was Torecan or Thorazine. Even so, I was braced deeper inside than I could reach, to spasm as he had and bear it, for the sake of life.
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my environment (note drip pole)
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        Imagine my surprise, then, and growing sense of unreality, as my treatment went on. The day after I entered and they put the Hickman cather in my chest, my intravenous chemotherapy began through it, delivering a round of Busulfan every six hours for four days, and five daily rounds of fludarabine, hammering my marrow and stressing my organs. And I felt nothing. Their cocktails of anti-emetics and other experience-softeners, and the good fortune of my own constitutional responses to these toxins, left me touched so lightly that I felt myself to be on the placebo branch of some protocol test until after the nineteenth cumulative round of chemo. Finally, after each of the final two rounds I had one transient spasm of break-through nausea, lasting only a few minutes and light enough to be dispelled by rubbing acupuncture points in my hands. One brought a dry heave; the other produced a spoonful of actual juice, to prove that I had puked.
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        And that was the sum of my immediate suffering, from my whole course of chemotherapy. I can hardly say how unreal this felt.
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******
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        During the next two days I rested, while my body metabolized the remains of these toxins sufficiently to not endanger the stem-cells I was to receive. So much Busulfan was excreted through my skin after every round that I had to shower repeatedly to make myself not dangerous to touch. Though I hadn't felt affected, I suppose I was recuperating in mind and in the rest of my body, even as the consequences of chemo-destruction continued to unfold in my marrow and other fast-growing tissues. But I hardly paid attention, for I was going nuts with computer problems.
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        I had meant my website to be up before I entered hospital, so that I could work intensively on its contents here. No such luck; I couldn't get the riddle of access to my provider's server sorted out until after a week here, from mishap on their end and misreading on mine. And even then I couldn't use it, as a mischievous malady had gripped my new laptop, stuffed with all my home files and work, perhaps even because of the way that I'd stuffed them, It disabled my access to drives, danced abortion unpredictably through various programs, destroyed two pen-drives in a row when I tried to protect data. Penned up here, naïve and rattled, I reached out too futilely for help as its damages morphed and became harder to describe.
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at the computer, nice wide screen (note drip pole)
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        Short of scrubbing the hard-drive clean and reinstalling everything, cautiously, bit by bit, which I scarcely felt safe in doing or had time for, what could I do? So mostly I worked away at the website's contents on my desktop, in between rounds of chemo, editing forms and putting in basic links. On these rest days I hacked away some more at the problem, but stuck mostly to editing and markup, where I could feel I was getting something done even though my site remained a dream. Need I say how frustrating this was? In truth, such problems bedeviled me much more than the chemotherapy. One might think it good that they distracted me; but I'd much rather have been distracted by the work I was burning to do.
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        On my blog,  I'd compared my coming experience in hospital with my time in jail forty years ago, in terms of the peaceful productivity I hoped for. I do think I'd have achieved that, if it weren't for computer problems; but the comparison was apt enough in other ways. Only in jail, and less so there, have I led such a regimented existence. During my first day of chemo, I received twenty-three visits from sixteen staff, breaking the clock into sub-hourly fragments as their talk and actions introduced me to the regularities of food-getting and blood-letting, cleaning of self's cavities and the cavity of my cell, and so on, that would govern my experience for the duration. During the following days, these played out only slightly less frantically. Four or five times each day, I was infused with multiple agents; four times twice around the clock my vital signs were read, and often in between. Plates of cooling food appeared periodically, commanding attention; monitors checked off my multiple showers and rinsings with alkaline mouthwash, and so on – plus regular blood-counts and irregular titer-draws, four scheduled dosings of oral medications even after chemo was over, daily rounds and afternoon visits by the attending hematologist and my wonderful nurse-practioner Lisa, laggard exercise sessions, and so on … In time, two dependable periods free from interruption appeared; but as these were from 1:00-3:30 and 3:30-6:30 am and it was hard to sleep during the day, I could hardly use them.
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yet another transfusion (platelets are tan)
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        Lord, is it any wonder that I never found time before this even to set down such a list – let alone to respond to virtually any of the dear and wonderful friends and strangers who sent me their regards and love by one avenue and another? For to write even the simplest genuine response to another person was to open myself to more feeling than I knew how to express, and required me to turn from my center outward -- while I was so buffeted by this regimented chaos of interruption, above the deeper chaos within, that all I could manage was to hold to my center in the fragments of free time. Forgive me, dear friends, this is all I was able; I would have spent an hour with you each time if I could.
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        Even my own writing took deeper focus than I could manage, and my blog kept on frustrating everyone who looked for updates, until Karen provided what I could not even blurt out, a brief, straightforward report of what was going on with me. Only such disability could have delayed me so in fulfilling my promise to report the second of my three magical dreams, so here it is now:
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[My Second Wonderful Dream]
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        I'm in the basement of a huge shopping-mall, or rather on the first floor down from ground. There are stores of various sorts in corridors extending one way and another, but what draws me is one near the center, where small flats of dusty mineral specimens spill into the corridor, as they do in small rock-shops the world over. Looking up, I realize I've stumbled upon one indeed, or rather, on a new one preparing to open for business, for through doors inside I glimpse people carrying crates from one room to another, setting up counter displays and bins for the customers they expect. No one's ready to talk with me, but no one seems to mind my looking around; so I finger the small change in my pocket while I cruise the pricier specimens in cabinets, as I've done so often in life. Room opens to room, the place is huge, goes on and on, with ranks of sliced mandalic geodes, calligraphic slabs, columns of watermelon tourmaline, towns and cities and metropolises of crystalline quartz … Passing the great display windows, with museum-quality specimens of argentine and cuprite, great spears of aquamarine, I realize I've come to the mother of all rock-shops, with more stock than all those I've seen in my life put together, in glittering crystalline displays pulsing with light, refracting rainbows from barely-imagined treasures, all open to my hungry gaze for worship even though I can't afford more than the meanest, still a miracle in itself.
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        I woke glowing, vibrant with energy, awed that a vision of such beauty and power could crystallize within me. For two days I bore it around in silence, its images pulsing vividly behind my outer gaze, still energizing me strangely, without pausing or needing to wonder whether or what it might mean. Until I told Karen, who gasped, knowing instantly that a vision of such crystalline glory expanding, opening for business, could only be a forecast of what was to happen within my bones; and so told me what I knew already, and wept as I wept.
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        So that made three: the first dream of my father's deadly betrayal, the second of this miraculous enterprise preparing to open, the third with my lover, sister, anima, planting new life in the dense tangle. I swear, these are the only dreams I've remembered since I read those first blood-counts five months ago, and each was an uncanny doozy. One can't get such signals by hoping or trying. I've been humbly awed, hardly able to grasp whether or how I've credited them in my deep reaches. I'd say that the strange calm and clarity and steadiness that have organized my attitudes through the whole of this crisis began at once, and was only reinforced by the sequence of their signals – but really, it began with the first, my acceptance of my terror – so how can I know what part they've played in the whole, what I've made of them, what they've made of me?
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******
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        Meanwhile, while I rested after chemo, Devora injected her belly fat for the fourth day with colony-stimulating factor, to spur her stem cells into crash multiplication and force them from marrow into her peripheral circulation. On my second day of rest, they harvested her. She mostly dozed during five hours as the tubes diverted its flow through the pheresis machinery and back again, but got a bit restless at the end. Bridget said she'd never seen such a harvest, but Devora thought she was just funning her until I called the next day and she said, "really, it's about the best I've seen in ten years, there's more than enough to freeze for a second try if we need it. Your case is blessed," or something like that. Struggling all day with computer glitches, I looked up too late to sit with Dev through her last hour as I'd meant; but she came by my room after dinner, and we hugged in glad thankfulness and humility, looking to the morrow.
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        They count down from Day –8 through chemo Days –7 to –3 through the rest days to call the transplant day Day 0. Some call it The Day of My Rebirth, but there's nothing dramatic to watch, just another bag dripping from a pole into one's vein for twenty minutes. Karen had to work, but Lorca and Jared were there with me, and Devora came with a bottle of Martinelli's sparkling cider. I located and downloaded our family celebration song, Purcell's "Come, Ye Sons of Art," in barely enough time to start before the drip began,; and we shared laconic Martinelli toasts -- the most meaningful being our ancestral Jewish toast, "L'Chaim!" ("To Life!") -- beneath the tumbling of Purcell's glad cadences.
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Devora bountiful
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        The mush in the bag was an odd rosy color, not at all like the tan of bagged platelets that I had expected. The small bag held only seven million CD34+ stem cells; it ran out before Purcell's final cadence. We hung around only briefly before we hugged and the others dispersed, leaving me to do markup on science lessons before hacking at the laptop's illness again. By late that night, I had somehow got the drives to open properly on double-clicking, and thought briefly that I'd cured the bug, until it popped up in a new place to collapse a program, whereupon the nurse came by to divert me by taking my midnight vital signs, freeing me to collapse myself, my frustration dissolving in a sense of wonder and hope at what might be happening within me.
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******

My Sister's Note, the Day After
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Dear Turtlebug,

This came to me, driving home.

Love,
Devora

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                            Stem Cell Transplant
                              for my brother Michael
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                            The color of my cells
                            dripping into you,
                            that rosy mush we
                            couldn’t really describe,
                            was exactly the color
                            of the pink rainbow
                            on the stippled side
                            of a trout seeking
                            habitat among
                            the rocky crevices
                            of a new stream.
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(Tears sprang from my eyes
like trout startled by
her precise splash
of metaphor.)
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******
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        And so began Day 1 et seq after transplant, waiting to see whether and when engraftment might occur. I was sure it would take a long time, at best, to take and become productive, given the state of my marrow, the rarity of my condition.
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        It was only after the third time that Jeff Wolf told us proudly how he'd been the first hematologist to cure a case of AML with advanced fibrosis, publishing the very first report – on some 27-year-old girl whose fibrosis dissolved completely after her transplant took -- fully thirty years ago by now, that I came to wonder, and then to get it: surely if he'd cured another since, he'd have said so too. I forbore to tease him, but said only, "Hey, you save me and you'll get another bookend paper for the art, the youngest and the oldest saves on record." Two months later in hospital I asked straight out how many such cases he'd seen before me. Just five in thirty years, he said.
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        If I didn't bother to ask whether he'd saved another since the first, it was because I already knew, and had been prepared to know. After the first alarming report of my counts, I had been reading, and so had Lorca. As I had ransacked the technical literature of tumor treatment to understand his condition and seek some therapeutic edge so long ago, so he ransacked it for me now, with more powerful tools of computer grasp and professional access to online resources beyond my reach. By the time he slowed down, I had been through a foot-thick pile of offprints from the ongoing conversation of hematological research and treatment, and so had he, learning enough to home in on three half-plausible diagnoses, and to understand that Wolf's choice was nearly arbitrary, and that this hardly mattered, as all three amounted to the same problem, with only one answer as to what to do.
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        The kindest reports of transplant treatment for people older than fifty with ordinary forms of AML (Acute Myelogenous Leukemia) put one-to-two-year survival statistics at 31% or so. By thinking that I was in relatively good shape, and had such good support and treatment at a class institution, I could fudge this figure imaginatively up to 51%, more likely life than death, if only barely so. But cases with advanced fibrosis were so uncommon that we never did find a paper evaluating treatment outcomes for even a small series. All I could find were the many references testifying that advanced fibrosis was yet another dismal prognostic factor, on top of my age and the high number of mutations in my malignant clone, likely canceling out my optimistic fudge.
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        I hardly winced, for all I wanted was what numbers there were, whatever they were, to see what was what as I went along, already certain – from the first – about what I had to do. But I winced indeed as I thought of Lorca reading the same papers, understanding them even better than I, with the 31%s raking like brambles across the naked eyes of his heart.
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[Suffering? Oh, my!]
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        So I was expecting engraftment to take a long time, since Jeff agreed that fibrosis was likely to slow the process. In the meantime, what I was waiting for as the numbered days marched on was to get hammered by the side-effects of the chemotherapy I hadn't felt. Chemo targets fast-dividing cells democratically, affecting not only malignancies but regular blood-making cells and hair and all the mucous tissues, including the digestive tract from lips to anus.  It takes a while for the inflammations and ulcers to begin appearing. In the mouth, they're called stomatitis; all the rest of the way mucositis is the term, from mild cases to severe ones torturing intestines to bloody diarrhea. I was glad my protocol hadn't included radiation, which makes these afflictions even worse – though I wouldn't have wanted to agree to that anyway since it tends to make people stupid.
.
        So I'm waiting to feel chemo's after-effects, and nothing keeps on happening as Day 5 turns into Day 6. I do have a day and a half of slight malaise, but this hardly affects me as I manage at last to load a whole first version of my website from desk to the distant server. I plug the URL http://mrossman.org/ into my browser, and see my front page appear on the screen just as everyone else's does – albeit so bare and primitive, with just a few titles linking to the texts of two new books on thirty years of teaching science,  forty-some of writing about the Free Speech Movement.  Stoked, I down some Tylenol, thinking a slight ache from internal battering might underly the malaise; that failing, I go back on anti-emetics, and it disappears. I'm still eating ravenously, making the best of the mediocre food here, chowing down more than I do at home, as I've done ever since I came in hospital --  and my weight's still dropping, I've lost ten pounds of fat around my middle while sitting in front of the screen and riding a bike for five minutes twice a day when I remember. No one has any idea of where the fat-energy's going, but why complain? I'm trimmer than I've been for many years.
.
        Meanwhile, I've been charting my daily blood counts. The long decline of my red-cells and platelets concluded precipitously after  the chemo, leaving my keepers to keep me going by transfusions every day or two.  As for white-cells, you can't transfuse them. A nominal quorum of neutrophils are still floating around for days, but their protection is an illusion, for they've been disabled by the Busulfan. In reality, I've been profoundly neutropenic from Day 0 on, quite defenseless save for the antibiotics, anti-virals, and anti-fungals coursing through my system from the pills they keep me popping. On Day 1 I stop going out of my room to make microwave tea, even with a hepafilter mask, and just hunker down in my cell for the duration, insisting that every person who enters the door wash first with antibacterial soap, instead of the convenient alcohol-gel squirt that can't kill pervasive C. diff. Besides staff, I see only my family members and lover, each time wondering what germ-laden air they breathed on the plane or bus, what their last touch of my granddaughter might transfer.
.
        But I'm still feeling no pain, though a single painless sore appears on my palette by Day 7.  The next day my free ride finally begins to end, with a sore spot on the side of my tongue. By Day 9, my uvula's ulcer is visible and a bother; but worse are the sore spots developing on both sides of my tongue at the root, so deep that the disgusting anaesthetic syrup can hardly reach them and doesn't do much good anyway. They hurt whenever I move my tongue to speak, and eating becomes progressively more painful over the next few days, to the point that I'm reduced to applesauce, yogurt, and two high-calorie, high-protein milkshakes on Day 11.  After that, my tongue pain decreases steadily, faster than my appetite rebounds, leaving me now only with a sore uvula, healing more slowly.
.

.
as bad as it got
.
        And that was the whole of my post-chemo pain. Though genuinely inconvenient and painful at meal-time for a few days, my stomatitis hardly amounted in sum to more than a bad case of strep throat, for nothing hurt when I wasn't trying to eat or to speak up. What bothered me more, in truth, was that I couldn't do any editing on my website. The program that had ported up my first draft had somehow left it unreachable; for days emails crossed between the server folks and my advisers, without resolving the matter, while I twitched, left only to more editing on my desktop.
.
        So tote up my suffering during this whole ordeal: these mouth sores for a few days, and two brief spells of mild nausea during chemo, plus another one out of nowhere on Day 10.  It was not quite a free ride all the way through, but seemed nearly as close to such as it's possible to come. I hardly know what to tell my friends who winced so deeply, imagining what I must be going through, except this truth -- and my wonder at being so fortunate in this regard, as in every other concerning this illness, except for the illness itself, which may some way in the end -- who knows? – prove fortunate too.
.
******
.
        As for my hair, it finally started to fall out, though only from my head, just when the mouth sores were coming on – though this coordinated expression of chemo's damages was rather a coincidence, as quite different tissues were involved.  I let random hairs fall for three days, and then sat smiling as Lorca shaved my head, remembering the wicked glee with which he had flung his loosened locks at his friends so long ago, and how it had felt to bend over him in the tub then, shaving him bald. He bore it with stoic grace thereafter, shrugging off the funky wig we got him in favor of a simple baseball cap, doffed at home. How deeply sweet it has been to have him companioning me so vitally this time around.
.
        I regarded myself wryly in the mirror. I had rather liked my pixie cut before hospital; after fifteen years in severe long hair, it seemed quite upbeat. But this aging baldie, suspended between dignified and vulnerable? Oy. I saw myself as my mother's father Aaron so long gone, his blue eyes regarding me above a beakier nose, knowing so much more than he could say.
.
        The next night, Jaime and Jayne came over.  He had come down from Seattle three times, totaling almost half my time in hospital here, though he'd lost a few days from a cold, quarantined till we could be quite sure.  Mostly we'd played Go, that infinitely subtle Tao-game whose bare elements I'd shown him so long ago.  Lately he's taken it so seriously, rising in rank faster than anyone not Korean and starting at four has a right to.  On the board we delighted each other, he with his startling depth of grasp of play and his tender tutelage, me as the promising novice responding to his care. So sweet!
.
       
.
        But this last night, we set the board aside, as Jayne joined us in a truly collaborative design session. They giggled, mixing the henna, and then I froze as she applied it with graceful strokes, tracing a large peyote-bud on my crown with a Tao-sign as its center flower; and concentrically below, from brow to nape and round again, the great world-snake Ouroboros swallowing its tail; with ornate scales, scattered stars between bud and snake, and dangling forelocks of floral elements.  Finally I looked in the mirror. Gosh, it looked distinguished indeed, in its quirky way. I wished the dark color of the henna itself would stay for weeks or months.  From the time they left until breakfast, I did three long sessions on the bike, working up a sweat on my scalp and then wrapping my head in saran-wrap, in hope of making the stain be more intense.  No such luck, only the pale ochre lines were left after I showered; but I no longer felt nearly so naked, preparing to venture back into the world.



.
========================
.
        As for "Good News Comes in Twos": the other part is that my website http://mrossman.org is finally up, with a lot of substance but rudimentary cosmetics as yet.  I'd appreciate any help in making it known to people who might be interested in the matters it focuses on -- for starters, my gathered writings about science education and about the Free Speech Movement, plus some writing about political posters (not yet illustrated, but that's coming).  In particular, I hope for help in getting it linked-to from other sites; and in making it otherwise visible and attractive to search engines.  If anyone has advice about book-publishers for the Science Ed and FSM books, that'd be dandy, as I'm totally out of tough in that way.
.
    [Earlier references to unstable page URLs are now obsolete; any page on the site can now be bookmarked without fear it'll disappear.]
.
    After so much frustration in hospital, how sweet to have it all working well!

* * *
.
My Sister's Note, the Day After
.
.
Dear Turtlebug,

This came to me, driving home.

Love,
Devora
.
.

Stem Cell Transplant
for my brother Michael
.
The color of my cells
dripping into you,
that rosy mush we
couldn’t really describe,
was exactly the color
of the pink rainbow
on the stippled side
of a trout seeking
habitat among
the rocky crevices
of a new stream.
.
.
##

.
(Tears sprang from my eyes
like trout startled by
her precise splash
of metaphor.)

.
.
##

* * *

.

     An Update from Karen McLellan
.

This is a brief update on Michael's condition.  You'll no doubt be hearing from him directly, hopefully soon, and much of this may be repeated -- more eloquently! -- but I know many of you are very anxious to know what's up:
.

The headline is that Michael's doing fine. He's been in hospital since Mon, 10/29, where he received chemotherapy round the clock for five days. He received the transplant of Devora's stem cells this past Tues, 11/6. They were able to harvest from Devora plenty of healthy stem cells, enough for the transplant, and then some to freeze in case he needs more later. The transplant coordinator told D. that she was the best donor they'd ever had. Devora and Jared and Lorca were there to celebrate the occasion, a simple 20-minute addition of her stem cells into his body. A small act that means Everything!
.

He's had very little in the way of side-effects so far. They now have amazing drugs to control the nausea of chemotherapy, so the first week was pretty much a breeze. A few days ago he began to feel a systemic malaise, and yesterday he experienced the first of the mouth sores which are an expected reaction to the chemo. They assure us he'll lose his hair but probably not for several more weeks, so he's still sporting his "aging-pixie cut" as he calls it, which some of us think looks just fine on him. There are many more expected side-effects yet to come, and the extent and intensity of them is completely unknown. So ... he's just taking the ride. With a lot of grace. A whole lot of grace.
.

His white-cell counts are bottoming out as expected, so he’ll be in protective isolation, in a room with positive air-flow and HEPA filtration, and only family visitors, until his counts come up enough for safety, which may take a month or more. His room is quite comfortable, with enough space for elaborate computer equipment, including his favorite computer chair, good speakers, and a huge screen on which we are watching The Sopranos on the nights when I stay over. Family is taking turns visiting, which I think is both welcomely distracting, and sometimes tiring, so we're still working out the timing. We're all eager to help, but the truth is the only help he really, really needs is with his cranky computer, and we aren't much good for that. He is trying so hard to work on his website, and the computer daunts him at every turn. Grrr!!!
.

I have never seen a group of doctors and nurses who were more universally helpful, smart, concerned, warm and welcoming, and immediately there when needed. It's comforting to know he's in such good, safe hands.
.

You can write to me at karenmclellan@hotmail.com if you need to know more, or need to send anything to Michael. This is the best way to reach him for now.
.

I sometimes get to see his reaction when he gets messages that folks are pulling for him, praying for him, loving him ... and it would make you all glad to know how it brightens him. Thanks so much for all your support. It really, really means a lot to him. As for the practical help so many of you have offered, I suspect we'll very much be able to use it when he is out of the hospital.
.

On another practical front:
.

Here's something that many of you can do, which would be great! And so important. If you are able, you can give blood, and/or join the national blood stem cell donation registry. To donate blood:
.

1. Wherever you are, just go to your local blood bank and donate. He's using and will be for some time, a whole lot of blood out of the nation's supply, so putting some back in is a wonderful way to help him.
.

2. To give platelets (or whole blood) directly to Michael:
.

One must go directly to the UCSF BLood Center on Parnassus in SF. The phone number is: 415-353-1809. FOLKS OF ANY BLOOD TYPE CAN DONATE PLATELETS DIRECTLY TO MICHAEL. If your blood is 0-negative, you can also donate whole blood directly to him. (Interesting: His blood type has been A-neg. but sometime during the first few weeks after the transplant his blood type will change to Devora's, which is A-pos. 0-neg. of course is a universal donor.)
.

But whatever your type, the routine is that you go there and initially give a pint of whole blood, so they can type you and check for disease, etc. If you're not Michael's type that blood will be donated into the general supply. Then, after 3 days you can return to donate platelets directly to Michael. You can donate platelets every four or five days afterwards, if you wish. You don't need an appt. for the initial donation, but it is wise to have one for the platelet donation.
.

3. Becoming a blood stem cell donor would also be a wonderful thing to do on Michael's behalf. (If you're like me, you've meant to for years, but never quite got around to it.)  He didn't need the registry as it turned out, but he sure might have, and it's in times like this, through people's friends, that they add to the registry list, a thing which any of us might of course one day need.
.

I'm told that one contacts the National Bone Marrow Registry. Even though one no longer needs to go through the painful process of having a bone marrow sample taken -- they now just take a sample of your blood for typing -- I'm told that it is still all run through the National Bone Marrow Registry. Just be sure to tell them you want to join the blood stem cell registry. (I've heard that they won't take bone marrow from folks over 60, but they will I'm told take our blood stem cells.)
.

Needless to say, any of these donations are deeply, deeply appreciated.



 
* * *
* * *

.
.             Another Propitious Dream
.
.     Early morning Sunday, the day before I go in hospital. I’m awakened from a dream, or by a dream. It’s only the third I remember, during the four months since my diagnosis – which is odd, since I’ve been off cannabis for two months now, which usually leads to more dream-remembrance, as pot suppresses this. But I’m hardly complaining; the three have been vivid and deep enough.

.
.
    Last night, I cut my hair, up in Karen’s bedroom, with Devora watching and giggling too, after returning from her second evening of holy circle dancing instruction, with another to come tonight. How fine, that she gets to spin in the rounds she’s loved so for a decade, in that fine new dress that so flatters her figure, just before she goes to hospital on her own convergent path – four days of injections to stimulate her blood stem-cells to proliferate, aching her marrow, until they spill in plenty into her peripheral circulation,  to be harvested over five hours the next day while she reads a book and her blood goes out one arm and in the other as the apheresis machine sieves what they seek, the pint or so of fluffy tan cells they’ll let loose in me the next morning, to seek a home in my dry marrow.

.
.    It surely was fun, the first time in  … how long? maybe fifteen years? that I’ve done it, hacking away with the orange-handled shears with half-remembered blind sensitivity till the last long lock was bundled with the rest in Devora’s hand and I oped my eyes to regard myself in the mirror, guiding the touch-up strokes, as agiggle as they were. O, they were full of compliments – “How nice you look, how much younger, etc.” – as they’ve been promising for years, unable really to get it, how I could be so relatively content with it looking so messy on top and me so severe with it drawn back as it almost always was. And hardly understanding this myself; but I just liked the way it felt, more deeply than however it looked. And now? Handsome, shmandsome, I can hardly credit their crowing triumph. And I sure don’t look younger to myself, all those graven lines will scarcely go away, even when I’m grinning so. I think I look like a pixie, or aging elf – my image reminds me of my magical friends Gar here and Carla in Sweden, we’d make a fine trio, lurking in the bushes peeking out as Devora’s merry coven swirls around.

.
.    But I digress. I was due to lose the plumage anyway, some days after they sauce my innards with the alkylating drugs that will kill nearly all my fast-dividing cells, just as they did for Lorca so long ago – not only the malignant haematopoietic clone(s) proliferating in my bones, but my remaining good stem-cells, as well as my oral mucosa from mouth to anus, launching me to find my place on the bell-curve of open sores; and of course all my hair, not just on top but my furry face and crotch, my chest, my fuzzy forearms so fine for washing the car, and so on, leaving me smooth as a child. So hey, why not trim my head in advance, play around, see if the ladies are right, how I’ll look at this stage of life, and after hospital, as it grows back? I’m embarrassed I took till last night to shear myself, but already this morning my head is cool, slightly chill, I’ll have to wear a cap a lot of the time. Bound together, the trimmed locks look somewhat like the tail of squirrel or coon, some more exotic animal. I promised my angel Bridget, the transplant coordinator, that she’d see me shorn before I went in. I thought to show up tomorrow on fifth-floor haematology clinic with the plume pinned to my waist, dangling down, with the head of my penis peeking shyly through the wavy tresses --- hey, all the nurses have seen enough guys in the buff, why not brighten their day with a chuckle? – but Devora and Karen got all stern on me and forbade it, for no good reason: the folks on that floor already know who I am, with my earnest graphs of my declining, ricocheting blood-lines and all manner of technical questions, so why be shy?

.
.    Ah, well. So I was doubly in a good mood when I slipped into slumber at two this morning, having finally figured out (I think!) how to get the personalized bowels of Firefox and Thunderbird transferred from my main machine to my new laptop so I’ll be able actually communicate from hospital, suppressing my panic about how unfinished the mess with camp payroll taxes remains. What wonder this didn’t trouble my dreams …


.   So as to that. Unlike my second marvelous dream, still to be recounted, which took me days before I could recognize what it so clearly meant, this one’s meaning was so clear that its literal camouflage evaporated almost entirely before I could remember to remember such details, leaving barely more than its essence. I was with a somewhat younger woman. Some older male spirit had brought us to this densely-tangled place, left us with guidance and clear admonition; we did not look longingly after him, but moved gladly on with our task. She was/is near and dear and so familiar – and so essential that I have no sense or inkling of whether she is my sister or Karen, my lover in the flesh or through our gaze, my dear friend Heather who came Wednesday, Yvonne who tends me in her dreams, another so, my own anima. Whatever, whoever; as likely it seems she is all, their confluence, for so it goes in the deep reaches, where we are no longer separate from each other. All I know is that I am deeply and well companioned, down in the marrow, in the primordial jungle that young Darwin beheld with wonder as I looked through his eyes again last evening while transferring files on the laptop – oops, how did that get in there? but I did, and so it goes, this process of stewing – and we are busy at the task already together, clearing the tangles, making space for new growth, bringing the light to warm it, fresh rain. I woke buoyant, bubbling, chuckling like the busy pressure-cooker, so filled with warmth and gratitude I had to set this down.
* * *
.
                            Moving On, Going In
.
Dear Friends,
.
       During the late Sixties, my most peaceful and productive time was the months I spent in jail for my part in the Free Speech Movement. During this decade, I hope to say the same about my time in hospital.  I’ll spend at least a month at UCSF, in treatment for an acute leukemia. I'm going in on Oct. 29; I hope to be out by my birthday on December 15.
.
       While I’m there, I mean to put up a website – www.mrossman.org -- in part to publish two books.  One will be about science education, which I taught for thirty years. The other will bring together 43 years of my writing about the FSM.  I’ll appreciate your help in making them visible on the Web, and through traditional publication.
.
       I’m glad to say that my new blood system will be transplanted from my dear sister Devora. Besides being the best possible match medically, her blood is also politically compatible, as she too is a veteran of the FSM and a lifelong hugger of trees and children.
.
       In hospital and during the long recuperation, as so far, I’m supported so by loved ones, as to be as fortunate as anyone can be. Please don't send flowers or plants, as they'll be dangerous to me. I'm not sure yet about visitors. I hope to do better than I have so far, at keeping friends posted through my blog at mrossman.livejournal.com. I’ll welcome your comments there.
.
             Michael Rossman
Current Mood:
chipper chipper
* * *
.
.
.
.
.

Dream a Little Dream ...
.
.


The night after I got the surprising report that all my blood-cell counts were plummeting radically -- or maybe that very night, June 25 -- I had a wonderful dream.

.

It was a nightmare, actually. I don't have bad dreams often, or don't remember them -- maybe once a year, if that. I can't recall the last one, or another as curt and ferocious. I dreamed that my father was trying to kill me -- not by some distanced process or firearm, but with his own hands, in direct violent assault. The terror, the intimate betrayal.

.

Three weeks later now, I remember: Oh yes, Harold had been a wrestler in college, wiry and tenacious. And so was I, thirty years later, though more inclined to quit. The first time I came home, at Christmas break, we went at it on the living-room floor as my mother watched in alarm and my sisters averted their eyes. He was 46 then, still strong enough even in a labor journalist's life to be proud among his dockside friends, still quick enough to challenge my fresher bodily intelligence, hardly grasping how much he needed to prove this and more. If I relaxed my resistance almost imperceptibly at the end, as we arched chest-to-chest above the glorious carpet I had played on as a child, to fall genuinely pinned, this was not the sort of quitting I did sometimes on college mats.

.

During my two-year letterman career and after, we never went at it again, leaving tacit the actual shift of power growing more obvious as I bulked up and got smarter. Nor did we talk honestly -- how could we? -- about the end of physical punishment, a year or so before my taken fall. His occasional spankings had finally played out as a means of retribution or control by the time it became ludicrous to take a resistant teenager across his knee. But the impulse remained, as I grew more able to challenge his opinions and his thinking, and more inclined to do so. One evening, in the same living-room, during a particularly frustrating debate about how to run society or nail a nail or whatever, he launched a blow, more at my shoulder than my head. Instantly assessing its trajectory and force, I pivoted absently, just enough to take it on the temple, be driven against the doorway pillar, and crumple to the floor, to lie there apparently stunned for long enough to concern everyone, even himself. Poor Pop! He sort of got it, that he was being conned. His body knew that the blow I took was not enough to stagger and stun me, but my act was convincing enough to make him truly aghast at what he'd done, even before my mother's presence made him more ashamed, in ways doubtless concretized further out of my hearing. I was more regretful than proud of the trickery involved; but surely he had it coming. He never lifted a hand to me again.

.

That is to say, that I actually did have experiences of primordial sorts, of my father attacking me physically, though this is about as dramatic as I can make them up to be. Even so, I think it took me three weeks to remember this not because I repressed anything, but because it had nothing to do with the case.

.

I found my nightmare wonderful from the moment I woke, in part because I knew it had nothing to do with Harold himself. Rather, I knew more deeply than thought that the parent involved was my own body, which bears me forth in the world. The intimate assault, the betrayal, from my own substrate. What image or metaphor more concise, more deep, more telling might be, to tell to myself? Not even one involving my mother; for She is the Other, which isn't what's happening here.

.

What was wonderful was not only the deep aesthetics of its phrasing, but also the clarity of the message. Hey, I'm scared to my core, or close enough. No chance to hide this from myself. A relief, of sorts, to be so in touch with my feelings. If I haven't had a bad dream since then, perhaps it's because I don't yet need reminding.

.

During the next few days, I saw constantly, focus by focus, how vivid and precious everything is. That feeling or perception, whatever, waxes and wanes, lurks close to hand, as always in truth.

.
.
.
.
.
.
.
.
.
.

.
* * *
..
.
By the way ... what's surreal about the whole thing, is that I feel just fine.  Aside from slower clotting-time, which I'd noticed for some months before, and less reserves of energy for uphill climbs, I'd never suspect anything nasty was happening. Go figure; but I'm certainly grateful.
* * *
.
.
.
. SOME TECHNICAL DETAILS; A LITTLE MOISTURE; THE DESERT
.
.
.
Oh, dear. I am so slow to write, so characteristically laggard in communicating, even or especially with those I love – it is that, rather than the weight of news, that has so stayed my tongue and pen this time – and meanwhile word is trickling out and around, and you who have heard already have been too kind to knock or call, all but three in as many weeks so far, who have left the very lightest and most welcome touches to remind me, speaking for so many, of what you feel for me. And I am full of tears now, on letting myself know this, for only the second time since the news began to break on my own shore.

.

The first time took three weeks. I came back from the first session of Camp Chrysalis on a three-day turnaround before leaving for the second, to a message from the vacationing new internist whom I hardly know yet: “your routine counts are alarming.” I saw them next day at his office, they were indeed. “Get me to a hematologist tomorrow,” I asked his stand-in, “I’ve got a camp to run.” Miraculously, it seemed, he managed: I saw the fellow next morning, though he didn’t have time to do a bone marrow biopsy till the next day. Whenafter, I trooped off to camp only a day late and variously distracted, knowing nothing would budge until the biopsy reading arrived twelve lagging days later -- with a thick sheaf of paper on hematological disorders to entertain me, and to get my polysyllablicity up to speed, preparing to talk turkey with these folks.

.

I drove down the third night of our Sierra session to parse the biopsy with the quickie hematologist, who’d already impressed my support team as a trainwreck. He asked how many transfusions he’d given me so far, scanned my biopsy for the first time (we’d had it for days), and flip-flopped back and forth on what might ail me each time we pointed out another factor, imagining details he hadn’t read to support his new conjecture. My marrow was so fibrous that the biopsy was botched, drawing just enough liquid to say so and to provision the flow cytometry readings revealing a mutant clone of stem-cells with enough genetic derangements to spell “poor prognosis,” in chorus with my counts, my age, my fibrous marrow. Leaping over the cloudy pit of diagnosis, he went through the options, sort of. When we asked about stem-cell replacement, which he hadn’t mentioned, he allowed as how I might find someone who’d try such a dicey thing if I really tried, but he thought it too foolish-dangerous to contemplate. On the first visit, his excellent nurse had told us frankly that he was over-booked and under-performing; after this episode, Lorca asked her how she could bear it, and tried seriously to recruit her for Kaiser.

.

Need I say, I didn’t return to the Sierra session? It was comforting to have so fine a staff team there, and to be so closely companioned here by Lorca and Karen – not simply from who they are, but because we had formed such an intimate team in his cancer crisis nearly thirty years ago. How it all came flooding back and forward, with our relations so permuted now! And with such chops brought to the task, with my ER-doc son on point like a border collie in each consultation, piling meaty bones gnawed from online med-sources upon my reading-table, and Karen riding shotgun on his assessments and working the network to get me a first-rate hematologist at UCSF – such sound guides and helpmates in negotiating the systems of thought, the systems of practice.

.
.
.
.


           On telling my younger son
           about my counts, the prognosis

.

           for the first time, I cry
           so sorry to burden him
           with the weight, his
           helplessness, my loss

.

                                                   7/15

.

Well, that’s poetic license, a bit; but I get to, right? The field of hematological disorder and treatment is a mess: the clinical entities are still mostly vaguely defined and overlapping,  and there’s hardly a clue to what works and why or not in any particular case, only the patiently-assembled, fragmentary statistics recording what’s happened from what’s been tried, suggesting what to try next, hinting at the odds. My condition probably falls somewhere in a pit bounded by myelodysplastic syndrome (“messed-up marrow”),  acute myelofibrosis (“sharply fibrous marrow”),  acute megakaryoblastic leukemia (“sharply-multiplying platelet stem-cells”), acute panmyelosis with myelofibrosis (“… fibrous marrow, all cell-lines afflicted”), and so on. More marrow biopsy and fancier genetic testing might tell us more about categories, but are unlikely to illuminate the major practical questions of how soon my condition will grow how much worse, and what to do.

.

In sum, there seem three options (allopathically, to be sure; but if the cut-burn-poison people were good enough for my kid, I can scarcely scorn their present art.) One is to do nothing but treat palliatively, with transfusions as needed -- which promises a median survival  of less than a year,  or even less if my age be factored in, or maybe not if my youthfulness is reckoned against that, or even less if the cell-genetics are heeded, and so on. Ugh. The second option is to try for a remission. An analogue of thalidomide reversed symptoms for a few months to a few years for some folks, in some diagnostic categories only. Of course, the side-effects were bad enough that 45% dropped out of the trials; but now they’re using a much smaller dose plus a bit of prednisone, and only 5% are dropping out, which sounds way more bearable even if the success rate is only about one-in-three – until one reflects that temporary remission means it mostly comes roaring back. But even so, three years would be three times more than one, right? if I qualified?

.

So the only chance of an actual cure is option three. So listen closely. They used to call it “bone marrow transplant.” They demolished your marrow with poisons and radiation, and planted the supposedly-sterile hollows with someone else’s marrow. Treatment mortality ran 30-50% even among kids, which is why no one does it on people over 60. But some younger ones did get cured, at least of their original disease, if not necessarily of their acquired one of graft-vs.-host (GVH) disease. Now the pros have come to a subtler understanding: why this worked was not just the marrow-demolition, which didn’t actually wipe out all your bad cells – but it was the new, grafted blood-making cells, whose progeny went after your residual bad blood-stem cells, destroying them all (in favorable cases), before sort of going after the rest of you.

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So the new regime is no longer “bone marrow transplant,” but “hematopoeic stem-cell replacement.” They don’t hammer your marrow nearly as much, so they’ll even do it with folks my age. They no longer inject you with a quart of donor’s marrow; they just take someone’s peripheral blood, pull some stem-cells out before returning it, and deliver them into your vein, to plant themselves in your marrow by themselves.  Treatment-related mortality is down to 15% or less, which sounds grim until you think of 30-50%, or the 100% end-state of option one. Full cures actually happen with 10%! Wow! And what of the 75% in-between? Well, the original blood disorder does seem to go ‘way; and we’re left with a bell-curve of responses to graft-versus-host disease, ranging from mild occasional itching, to such litanies of minor and major problems that some on that end of the curve wish they hadn’t. Roughly speaking, the light half of this curve seems like a great bargain, given my circumstance; and the darker half not so great, grading to grim.

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So here I am, looking to check out options two and three in more detail, leaning towards three. Trouble is, I’ll do worse if I’m in worse shape by the time I begin, and there’s no telling when I’ll slide further beside “sooner rather than later, probably,” so time presses for decision. The best possible donors are my brother and sister, who between them offer me 7 chances in 16 of a best-possible match. But institutional and HMO wheels grind so slowly that checking them out has not yet been approved,  so it’ll probably be weeks before I know if they match. If not, then it’s a search through the general registry of 8,000,000 potential donors for a somewhat inferior match, more likely to court more serious GVHD.

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So it seems like a fine time to go to the desert with my family, plus a bunch of reading – more hematology for me and Lorca, a bundle of my writing about science teaching for them, to get their feedback about what – from so much, after so long – might make a proper book on the subject. With Karen and then our kids, and sometimes alone or with others, I’ve been going to the Ryepatch area for 41 years … an austere and vibrant Eden, or so I’ve found. As fine a place as any to fertilize with my bones, I’ve thought since long ago. It’s hardly macabre to remember. Meanwhile, my odds may actually be decent, and the light there is beautiful, changing all the while.

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If there were aught you could do for me, like share your blood, I’d not be shy to ask. I may in time come to be grateful for a meal or whatever, going through whatever I do; but for now, there seems to be nothing practical to do, besides radiating some love into the cosmos – and if so, for how much more than my picayune plight! – and perhaps sharing some relevant reference we may not have heard of.

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Enough for now, I’ve got to finish packing and get some sleep, before embarking in my wonderous old Suburban – with 4WD, compound low, armored gas-tank,  it can go anywhere. On the back-side of the Humboldt Range there are seven permanent trout-streams, one with fish as long as my arm, slapping my legs impatiently beneath the arching roses and currants. May such pleasures come your way. More anon.

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    Michael    30 July
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