March 18

Medical update; and please
come help pack some books away!

        Things are speeding up. My medical destabilization is a motor of destabilization in the rest of life: it’s hard to know what’s going to happen when, how it will feel, and what will come from it.

        Case in point: my second hospital stay. I left you last with my expectation of going into hospital yesterday for a full-scale Mylotarg treatment (9 mg/m2).  Didn’t think it worth mentioning that two such – the standard protocol for this novel monoclonal antibody – produce about 20-25% mortality, mainly from liver damage, to balance a similar proportion of remissions.

        Well, after my hematological team thought about the one report so far that suggests that dividing a standard dose into three 3 mg/m2 doses spaced several days apart produces as much anti-tumor action but significantly less liver damage, Jeff settled on an even more cautious and flexible procedure: I’ll take a 3 mg/m2 dose, we’ll see how I tolerate it, and in a week we’ll do a bone marrow biopsy to see whether that 90/10 balance between my malignant lymphoid cells and Devora’s clean ones has shifted, say to 80/20 – which surely would invite trying that again, and again and so on if I tolerate it well.  We’ll then entertain consolidating measures: encouraging GVD by slacking-off the immunosuppressants and maybe importing some fresh T-lymphocytes from Devora …

        So actually, I went in hospital for the first round last Tuesday, a week ago, and left by Thursday evening.  The brevity was a bit disorienting – I’d brought enough work for weeks, not knowing how long my reactions might take to resolve – but who’s complaining? I felt no side-effects from the tightly-targeted treatment; my labs on Thursday and Sunday showed no notable liver or kidney damage.  My counts had finally gone down enough to require transfusions in the week before hospital, for the first time since I left it in November; but there’s not much sign yet that the Mylotarg has made this worse. Today in clinic I’ll learn more about that. My marrow biopsy will be drawn on Thursday and hopefully well-enough analyzed by Friday so that Jeff can plot next steps with me, before he goes off to Machu Picchu and the Galapagos with his family for two weeks, leaving an adequate team to cover me.  If more Mylotarg installments are due, it seems I may be able handle them in clinic visits rather than going into hospital each time.  Whee!

        And the gross edema that suddenly fattened my feet a week before hospital hydration plumped them further has receded sharply, courtesy of lasix and a lowered prednisone intake; and the lowering of the preds hasn’t brought GVHD symptoms back yet, I’m still eating like a pig and running on a lot of energy, getting a lot done. So as a medical case, I’ve been having a dandy time since last I checked in.

Every feature of this description is subject to sudden reversal, of course, but this is how it’s been seeming and feeling.


        As for the rest of life,  I’d appreciate your material help again.  The  Phase I farm-out-my-plants project went very well; there are only about fifty left inside, awaiting hosts. Please don’t be shy; orchids will grow for ordinary people as well as for the rich.  Many easy small philodendrons and other oddities are still available – and oh, the huge philodendrons! Lincoln took the one in the living-room, but who has space enough to handle one of the two remaining in the den?

        Phase II is PACK UP THE BOOKS! to free up the rooms for renovation, so I can come back home. I’m hoping that you can come by to spend a couple of hours packing on Wednesday, Thursday, or Friday afternoon during this week (only). At the moment, we’re figuring the time from 4 to 8 each evening as open-house for this. Just dropping in would be fine – but if you have an idea of when you would prefer to or could come, and send me a message with the header “book timing”, that would help us plan. We’ve gotten 160 uniform banker’s-boxes, which should hold >3,000 books small and large. I’m printing large labels, so the different libraries can each be put away in fairly-well organized form for whatever transpires … My brother Jared, sister Devora, and son Jaime have all come here to help organize this project (and others); and I should be able to be present in my mask for much of the time, and would dearly like to be among you during this, as we talk about books and time and auld lang syne and what’s coming next ….


        About other help: I must thank Oliver Johns especially, for so many hours in bringing my new laptop, which so mysteriously malfunctioned in hospital, into a new state of health I can depend on. And – talk about specialized teams! – Lucy Johns has gotten me to conclude a 25-page presentation of my long ordeal with HealthNet re outpatient meds, and is holding my hand through presentation to a state regulatory agency that’s sounding as if it may actually do something.

        Among other specialized needs: I have a book in manuscript about learning games, which still seems the most important pedagogy (developed collectively) that came from the higher education reform movement from 1966-73. I want to make it available at least on my website. It can’t be  digitized by OCR; it must be retyped. If a dozen people were each to take a dozen double-spaced pages, I imagine two to three hours each would leave me a corpus I could readily work with.

        That my website keeps growing in breadth, depth, and variety is a pleasure; that hardly anyone looks at it yet matters little to my patience. Next time I mean to say more about the familial, personal, emotional, and spiritual textures of this whole experience, which are quite remarkable;  but you can understand why I can barely get this much out for now, with clinic five hours after I get this in the email.

More real soon, I do promise,


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