2 March 08
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.
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.
Phase I – Days 20 to ~75 -- Recuperation
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.
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.
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?
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.
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.
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 …
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!
My friend Gary Horvitz sends me another poem:
Bone Marrow Transplant
your newfound blood stories
tell me the sterile version --
how you charted your own death.
such a discrete demise.
neater than the real thing.
you were induced to slip out
on that lean glassy beam
where faith and science curl around
each other in tortuous passion.
the slender promise of rebirth
balances on an edge
between simple loss and mindful
today the left hand knows
what the right can only imagine.
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.
Phase II – Days ~75-112 – A Touch of GVHD
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.
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.
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.
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.
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.
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.
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.
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
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,
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