March 22

Packing My Books: A Brief Vignette
 
and Other News

         Jonathan Fernandez is on a stepladder, pulling down the six-foot shelf of periodicals and books that contain the fraction of my writing (30%?) that actually got published.  Nearly at the end, among the books, he pulls down a small black cardboard mailing-container. “Hey, Black Box!” he says.

         “How do you know about that?” I ask.  Black Box was a very experimental literary magazine published on cassette tapes  -- two per issue, with poems, stories, songs taped by their authors – funded by the NEA, and published from 1972 or so for a few years. I never met anyone back then or since who’d heard of it, and he was only a child then.

         “Oh, I think I have the full run,” he said. As he keeps his lights under a bushel, it’s not surprising when an odd one shines.  But what’s really weird about Jonathan is not that he’s a serious archivist -– a metabolic consanguity between us – but that he’s an activist archivist. For several years, he’s been doing historical displays in the street-windows of Rasputin’s, up on Telegraph Avenue, growing steadily more focused, coherent, and ambitious. Though barely fledged, his vision of using emergent technology to transmogrify the entire Avenue into a participant-interactional historical display exposing the local layers from Ohlone time through Berkeley’s founding down through each recent decade is breathtaking. “I’ve been collecting poetry on records. By now, I think I may have more than anyone. Why do you have this?”

         “It has three of my songs.” I forget how they got into Black Box’s first issue; did I simply read the promotion and send my submission? I never heard a word about them from anyone, never was asked for more, nor offered again, anywhere.  “I just put sixteen songs up on my website last night. It would be so nice to have little buttons on those three, so someone could click and hear them sung when they were written,”

         “I can digitize tapes,” he said. “That’s easy. Though tapes this old, there’s no telling what will happen, they’re ready to fall apart.”

         “That would be so kind!” I offered my copy of Black Box to him. He smiled: “No, I’ve got it at home already.”

         My friends boxed 53 boxes of books that afternoon. The next afternoon, when Jonathan arrived, he handed me a CD labeled ‘Michael’s songs from Black Box.’ “It was neat,” he reported, “you could see all the iron-oxide flakes flying off from the tape as it rounded the recording-heads.”

         Which is to say, that his tape was utterly destroyed. But the digitalized sound he captured was clear as a bell, immediately or with some touch-up. That night before dinner, my brother and sister and my sons and Karen sat behind me as I played the CD’s twelve brief minutes, too full of too many feelings to be able to turn to look at them. One song of dense lucid metaphor, of existential crisis on leaving Karen in 1968; another compressing the entire history of the Sixties into six stanzas  (how I long for such economy!); the last, about awaiting our son’s birth while the world was coming unglued.

         As they’re AIFFs, averaging 40 MB each, I can’t send them in an email. If someone shows me how to slim them down to sonically-inferior MP3s, I suppose I can send them. What I really want is to learn how to put them on my website as clickable links, in MP3 form or however. If you know someone who could guide me, that’d be so welcome. Meanwhile, I’ve made a bunch of CD copies and can do more at 20 per hour, so please don’t be shy to ask. And I'll give Jonathan my (nominally-)intact Black Box 1 to make his run complete again, along with so much thanks.

Other News

         Whee, it so does change, from day to day. Now the next bone-marrow biopsy is scheduled for Tuesday March 25, with flow-cytometric results due a week or two later, to see what that potent Mylotarg did in my marrow . So if I get a next round, as I hope, that probably won’t be until early-to-mid April – a taxing time for tax time :-).  Meanwhile, my liver has weathered it fairly well, with only modest rise in my metabolites, bilirubin in particular. But it sure has slammed my counts. My reds, oddly, are hardly touched; I won’t need another transfusion for some days. But my neutrophils, already in decline from the malignancy’s resurgence, have fallen more steeply since 12 March chemo, and are now down around 350 – genuinely neutropenic territory – so I’m back on high-paranoia cleanliness to complement the stronger, expensive antibiotic (amoxifloxicillin) they’ve shifted me to. OTOH, they’ve given me a shot of Neulasta – very pricy, though not to me – which stimulates neutrophile production, and may actually turn this cell-line decline around. But the line they can’t stimulate is platelets. They were already falling rapidly before chemo, and since then have been falling precipitously. As of yesterday, I began to have platelet transfusions daily. Oy, what a drag! It’s a 5.5 hour round-trip from here to clinic and back, just to have my counts drawn and get one unit of platelets transposed, which is all that they’ll allow. I think I’ve got it timed so that my platelet trough will be at 10k when I arrive early each morning for transfusion, instead of the 6k and 4k of the most recent arrivals, which offer prospects of intra-cerebral hemorrhage.  (My platelets used to run at high-normal, 400k.) They say I’m early in the week of greatest suppression of platelets by Mylotarg; so there’s some hope of getting back to a more-leisurely transfusion schedule by the end of the month.

         Until then, this business of being sick has escalated beyond a half-time job. Plus I’ve just learned, after finally putting together a killer 25-page presentation about how HealthNet has ripped me off for $4500 by mishandling my outpatient meds, that despite what I’d been led to believe, California actually has no regulatory agency that deals with HMO-patient disputes. They have one for PPO plans; but the industry got the state to back off from regulation of HMOs, on grounds that that was a Federal matter – which of course worked, in the current clime, and of course there’s no available Federal recourse. So I dunno. Maybe I’ll send it, with a brief cover-letter, to Channel 7’s On Your Side; maybe Jaime will shepherd my case through Small Claims court. It’s sure not worth much more of my time.     

         On the brighter side, the extensive edema that made my feet into swollen sausages no shoe could contain, due to some drug consequences plus all the water they pumped into me in hospital, has subsided almost completely, leaving me feet that looked like feet again when I got married yesterday. But more of that later.

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