Thursday, August 17, 2006

Day -5: Chemo, opthalmology, and messages

Today (Day -5 at M.D. Anderson) was the second day of chemo. It started very early again, with a blood draw at 4:00. This time I wasn’t awake—because I had asked Steve, the night nurse, for an Ativan at about 1:30, since I couldn’t get to sleep even though I had taken an Ambien at about 11:00. I had stayed up talking to Mason, enjoying it so my energy level remained high, then merged into a generalized low-level anxiety that I couldn’t dispel on my own. There was probably something I should have stayed up to contemplate (gee, what might that be, he wondered), but I wanted to get some sleep so I could handle today’s chemo and what I expected to be a long sojourn in the Ophthalmology Clinic—a visit that was originally scheduled for last Tuesday but which I declined first because it was the only thing that required our being in Houston that day, there was nothing on the schedule for the following day, Thursday and Friday promised to be pretty heavy, and we were already bracing ourselves for coming here this week. The other reason for not coming to Ophthalmology last Tuesday was my brother Peter’s terrible experience there: he was there for something like six hours!, most of which was spent waiting for the doctor, who is dreadfully overbooked. So my visit had been rescheduled for today, when I would be there as an inpatient. This turned out to be a good thing for me, and probably contributed to the agonizing wait-time for others: I only had to wait about 30 minutes before being called in, and once in there it was OK. This was partly because I had Dillon with me! Yes, Dillon was with me: Anna had had the brilliant insight that since I would be leaving the transplant floor she and Mason could bring Dillon to meet me at Ophthalmology. So they did, and that made me happy—even though Dillon was mad at me at first and wouldn’t look at me or come too close: he was pissed that I had ditched him for two days, simply abandoned him to the tender mercies of people he loves… But he had warmed up by the time we left the clinic, allowing me to scratch his ears and rub his neck, and settling onto his side so that the full weight of his back rested on my foot.

At the Ophthalmology Clinic, Galima (sp?), the assistant, did the preliminary workup. She asked when my retinitis pigmentosa had been diagnosed, and, remembering that Peter has the same condition, asked about other cases that might have occurred in our family. The only two I know about are those of my mother’s half-brother Abe and half-sister Minni, both a good deal older than my mother, who had been born to a different mother than they. (Interestingly, Minnie had only light-perception at an early age, while Abe retained some useful vision even into his 80s.) Then Galima did some simple tests designed primarily, I think, to find out whether my description of myself as having only light-perception matched the professional use of the term. Then she tested for glaucoma (none) and tested my tear ducts—apparently one effect of Graft vs. Host Disease (GVHD) is some sort of blockage of the physical capacity for tears (and in fact we met a young woman in the waiting area to whom exactly that had happened; she said it had been a year since transplant, and that was the only sign of GVHD; she’d take it!).. Galima dilated my eyes and left me semi-darkness to wait for Dr. Kim, a very pleasant woman who, as it turned out, had trained at Harvard under Dr. Elliott Berson, the first ophthalmologist I had consulted about my retinitis pigmentosa (at this point Word's spell checker suggests pimentos) c, (I had made annual visits to Berson’s cramped, crowded clinic at Massachusetts General from the mid- to late 70s, before moving to Austin in 1979).

I asked Dr. Kim what she was looking for, and got a very frank answer. In part she was trying to establish a good record of my current visual condition that can serve as a reference point if I get GVHD that affects my eyes. But in part she and Dr. Andersson were acting in accordance with their researchers’ instinct to gather interesting data that might come in handy some day. My brother and I had presented them with an opportunity that was too good to pass up—to study two siblings, donor and recipient, who share another unusual genetic condition. It sounds intriguing. But is it intriguing enough to be worth making Peter sit there all those hours? Or me, for that matter, even though I only spent a couple of hours in the clinic? What’s the likelihood of their finding enough sibling pairs who share these characteristics to build a meaningful study? That came to me as an afterthought. At the time I found Dr. Kim and the honesty of her answer quite charming.

When Dr. Kim was finished with her examination she turned me over to another assistant, Andre, who would take some photos of my eyes. He tried to do two sets. First he tried OCT, which I think stands for Optical Computer-assisted Tomography—i.e., a CT scan of the retina. Then he took several fundus photography of the retina. I had never heard of OCT before (I confess that my last visit to an ophthalmologist was six years ago, and if he had a device capable of such things he didn’t use it on me). But the attempt was a waste: I couldn’t track the flashing green light he told me to look for on the screen, and if I couldn’t do that he wouldn’t be able to produce a meaningful scan. The fundus photographs went a little better, though the procedure made me wish for a couple of minutes that I didn’t have light-perception: those flashes were very intense!
But then it was over, and I was back out in the waiting area with Mason and Anna and Dillon, waiting for someone from Transportation to come and wheel me back up to my room the way they had brought me down. But then it occurred to us as we waited that we didn’t have to wait! The weakening effects of the chemo still haven’t hit (thankfully), and here was an excellent opportunity for a good, long walk—and to spend more time with Dillon, too! So we walked, and it was just fine. When we got to the 11th floor, I said good-bye to Dillon as I had the other night, and then Mason walked me to my room. Shortly afterward a man named Mari arrived from the Physical Therapy department; he took me through a number of leg exercises that can be done while sitting down, and then he headed out.

Earlier in the day I had a very good conversation with Hope Lipnick, the Jewish chaplain here. At first I was going to say that I was surprised by my willingness to talk with her about God, especially in an explicitly Jewish context. But on second thought I’m not so surprised, just bemused: although it’s not a conversation I’ve participated much in up this point, it’s certainly the case that much of the work I did with Bhagirit in May and June was about God, and it’s certainly true that I’ve been thankful for the prayers of people who’ve kept me in their prayers these past 14 months, and it’s certainly true that I’m impelled to explore matters of the spirit in a way I’ve never consciously done. So maybe it’s time for me to think about this, and to acknowledge my uncertainties and doubts.

Today there were two envelopes marked “3.” Both contained music! The one we opened this morning was from Marko, a young Austin filmmaker and DJ who is the son of our friends Ivo and Ivana. It was an Aarvo Part CD, unearthly and beautiful. We opened the other one this evening: it’s another CD, this time of recent pop music chosen by Brian and Mia, friends from BodyChoir—they called it “music to groove to!” And so it is. It was fun playing it after the Aarvo Part.


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