November 28, 1999 - December 4, 1999

Sunday, November 28 A simple trip to The City and then to Chris's in Mill Valley was made more interesting (and a bit more complex) by Mike's offer to sell his hot tub to me. So we went to Newark first to look at it. It was the right size (2-4 people), the right price, and ozone ready, so Mike and I shook on it. He offered to repair the motor or take care of delivery. My upcoming week being what it is (hell week before performances on Saturday and Sunday), I opted for delivery. Then Don and I headed for The City to do window shopping. We were very disappointed in the Macy's windows: mere commercialism, no wit, no plot, not even a common decorating theme. To make up for the lack of luster at Macy's, we had a late lunch at the restaurant in Neiman Marcus. We got seated next to the balcony overlooking the great tree. Through the windows, we could see the lights of the tree in Union Square. This was the first time Don had done this, but it has become a holiday tradition with me. I told him how I celebrated my first Christmas in San Francisco this way, congratualting myself on taking the bold step of quitting my job and moving out here in search of a new career. Coming here was one of the things I had planned to do on "the weekend" - that awful weekend when everything changed. It was good to finally redeem some of the joy I'd hoped we would share then. We stayed longer than we had planned and didn't get to Chris's place until after 6:00 PM. The three of us sat around the table while Chris ate his supper and Binky, his cat, sought our attention. We also played two games of Fluxx, Don winning one and Chris the other. Then we went to bed quite tired. In bed, I reviewed our plans for the morning. Don had been taking his Zofran at 7:00 AM these past two days, but something he had said led me to believe he was planning on switching to an earlier schedule tomorrow. "When are you taking the Zofran?" I asked. "At six," he said. He made a dispairing sound. He doesn't like getting up that early and neither do I. "Then you take the Temozolomide?" I asked. "When?" "At seven." "That means we can eat at nine o'clock, right?" "Right." "Then what do we do?" "We drive to San Anselmo to see Broffman." "That's at noon, isn't it? Do you think it will take three hours for us to get there?" "Well, we have to eat first." "So we drive to the Sunnyside Cafe, have breakfast, then go to San Anselmo. Do you think that will take three hours?" "Oh. No, it won't." "I think we don't need more than two hours." "Great! Then I don't have to get up until 7:00." He got up and reset the clock. I'm glad of the extra hour of sleep. I want him to be as fresh as possible for the neuropsych exam tomorrow. During the night, I woke to the sound of someone fumbling around in the dark. It was Don. "What'cha looking for?" I asked sleepily. "The door," he said. Even though it was dark, I could still see it, so I guided him to it. It was on his left.
Monday, November 29 Don woke with the alarm at 7:00 AM, took the Zofran, reset the clock, then we both went back to sleep. The alarm went off again at 8:00 and he took the Temozolomide, and again we went back to sleep. We woke again at 10:00 AM. I took a shower, Don changed his clothes, and we were at the Sunnyside Cafe by 10:30. Breakfast was very filling. Don had his usual "pile of eggs," plus hash browns (which he didn't touch), a pancake (which he ate half of), orange juice, toast (which he didn't touch), and tea. I had French Toast, orange juice, and tea. Over breakfast, Don confessed that he "got lost" on the way back from the bathroom last night and found himself in Chris's room by mistake. "I soon realized the error of my ways and left," he said. "But it was the perfect set-up!" I protested. We'd been teasing each other for months about how attractive we both find him. "You should've just crawled into bed with him, said 'Good night, Lou,' and given him a big kiss." We got to San Anselmo in plenty of time and got in to see Broffman shortly after noon. This is the first time I've met him, though we've spoken on the phone. I was impressed with his knowledge and his interview technique. He started out by asking how Don was doing. Don said he was doing fine, and that he was greatly helped by my assistance. "I can see how being with someone like me can be a full-time job, even a lifestyle," he said. "It requires other hands on deck," said Broffman. Don said, "I apologize in advance, but I have to scoot at about five minutes to one. I'm meeting with my neuropsychologist." He then reviewed the findings from the November 22 MRI, and concluded with the start of the Temozolomide round on November 27. Broffman: What's the dosage size? Lou: 360 mg. B: Are you off Thalidomide? Don: Yes. B: How much were you taking when you stopped? D: 400 mg. a day. B: How well did you tolerate it? D: Okay. I was fatigued. I felt like lying down a lot, and I slept well. B: Thalidomide is an okay treatment, but it's a long-term thing. It might be good to continue. D: I restarted on September 27, but Dr. McNeil seemed to think it was time to come off it. (It looked like he might fail to mention the neuropathy symptoms again, so I interjected:) L: What about neuropathy? D: Oh, yes. I went off Thalidomide the first time because of an uneasy, chaffing feeling on my arms, back, and midriff. I was just beginning to notice that starting again when I went off it again this time. B: European research on Thalidomide indicates that low dosages - maybe as low as 200 mg. a day - work well as a long-term therapy. But it was wise to stop it as you started Temozolomide. You have to play out the new medications to be able to compare their effects on the next MRI. D: My concern is the effect of Temozolomide on bone marrow. I feel the drugs knock back the cancer, but the immune system does the real job of cleaning it up. How long will it take for my immune system to recover from the Temozolomide? B: Six months to a year, usually. But if it has no effect on your blood levels, it may be three to six months. That's the main focus of alternative, complementary medicine: to support the bone marrow without countering the drug. How's your cognition, memory? D: (Shrugs.) L: I think it's much better. B: So, if you read a novel, you'd be able to tell us about it? D: Well, historically, I wouldn't have been able to anyway. B: Focusing on enhancing cognition is not primary, then? D: Right. B: How's your appetite? D: I get hungry, but when I sit down to eat, I don't eat much. B: You think you're hungrier than you are? D: I order what I used to order, what I used to be able to eat, but I can't eat it all. B: Would you say you eat less per day? D: A little less. My historic pattern is one of grazing. But I go out to eat a lot more now. B: Any change in sense of taste or smell? D: Not that I've noticed. L: What about coffee? D: I can't tolerate it anymore. My stomach has a bad reaction to it. B: Any facial weakness? D: Not that I've noticed. I still have this flakiness on my scalp and face. It seems to have improved since going off Dilantin. B: Are you up-to-date with your eye exams? D: I was going to get a field cut test with an opthomalogist, but we had to reschedule. Dr. Angelone is going to work on my field cut, so we thought it would be good to get a baseline measurement. B: Any problem with your teeth or gums? D: No. B: Do you have appointments with any other doctors? D: No. L: Huh? I think you do. D: Oh, yes. A dermatologist. L: And an ear doctor. D: Yes. He measured some hearing loss and tinnitus. L: And you had drainage. D: And I'm seeing an acupuncturist on the recommendation of Dr. Freinkel. I asked for an appointment at the complementary clinic at Stanford, but they're all physicians who've taken the short course. I wanted a real Chinese practitioner. And he is. He's so Chinese I can't understand what he's saying most of the time. B: So, Freinkel is useful? D: Yes, quite. His approach is to look at attitudes that prevent my considering my recovery a done deal. He put me on Prozac because I was on two central nervous system depressants and because I was worrying. So, Prozac to boost my spirits, which it did. But I told him I wanted off of it because it was depressing my libido. It felt like my life energy was way down here. (Places his hand a short distance above the floor.) I felt on Prozac the way I would expect to feel from meditating. It was his belief that decreasing cortisol would increase my immune functioning. B: There is a way to measure cortisol, once in the morning and again in the evening. It's a simple saliva test. D: When the oncologist told me about the tumor being "active," I felt she was telling me I was going to die. But I was dissociated from the sadness and fear. There is a tremendous amount of energy in those feelings. Being dissociated from them also cut me off from other vital energy. B: There's a paradigm shift going on in immune system theory, overturning the notion that the immune system attacks "everything that's not you." Fundamentally, it's a response to danger, triggered by the mind. If something is not perceived as a threat, the immune system does nothing. It has to be dangerous, not just a threat. D: Does it have to be a conscious threat? L: How can you be conscious of a bacteria? B: One assumes it's happening unconsciously as well. A threat is not necessarily dangerous. There are neurological receptors on the surface of immune cells, so they're getting orders directly from the brain. Research done with children and visualization techniques fighting cancer found that the kids who used militaristic images visualizing real danger did 25% better than those who just visualized pleasant things like unicorns and rainbows. There is an approach that "Cancer is a gift because without it you wouldn't quit your job and do what you've always wanted to do." This might be wrong. D: What were the militaristic images? B: Shooting the cells. It seems to work better. L: So, the Louise Hay advocates got it wrong with "love your virus." B: (Rolls his eyes at the mention of Louise Hay.) D: I give my tumor cells a lecture: "Get with it. This is a lose-lose situation. If I die, you die." Freinkel has another way of putting it. He said, "The cancer is not your partner." B: There's also work being done at the Toronto Hospital for Sick Children using viral toxins. Perhaps we should look into it. D: How about Newcastle virus? B: Someone at Stanford is doing research on it now. Unfortunately, since the fall of Communism, the quality and verifiability of what's coming out of Budapest is unreliable. So, I'm reluctant to recommend it. It seems to have the best effect on digestive track cancers. In sarcoma, squamous, and renal cancers, it has little effect. D: The published case histories are on glioblastomas. B: But those were children. The theory is that adults no longer have the virus that tutored the cells how to be cancer. L: (To Don) Tell him the poison oak story. D: Just before the bleed, I got a case of poison oak, and it got badly infected with a staff infection. It looked like "flesh eating bacteria." B: The reaction to poison oak is an immune response. L: Not cell-mediated, right? But by the lymph nodes. B: Right. Poison oak and bee stings injected into tumors have caused them to shrink. But these are surface tumors. He paused then and took Don's pulse, then continued the interview. B: What are your work plans? D: This is occupying all my awareness and intention now. If drugs don't interfer, I'll consider driving again. Then I'll consider driving to The City to work. I do have a consulting job through Commonweal. I pull stuff off the web and send it to a mailing list. I feel I'm really useful in this role. Would you like to be on the mailing list? B: We have a clipping service that does that for us. But this might be a business you can grow. I asked for the time and we discovered it was already 1:05 PM. "Dr. Angelone won't be happy I'm late," Don said, and we prepared to leave. Don offered to put Broffman on the CancerWatch mailing list again, and this time he accepted. He said he would send Don literature on the immune system, plus an updated schedule of supplements. The day was growing overcast as we left and Mount Tam was crowned with clouds. It definitely looked like it would rain. The session with Angelone was very revealing. Don was able to draw the classic "rocketship" diagram pretty well (better than I could, I think), and even did well on immediate and thirty-minute recall. His clock was perfect, and he was able to pick out outlines of objects overlaid on each other. However, the field cut test was a shock. Don has lost all the left field recovery of the middle field, and he demonstrates hemineglect in the lower left field. Dr. Angelone demonstrated this with the simple wiggle-finger test. (Don mentioned that at Stanford, they wiggled all ten fingers at you. "Ah, well, yes," Angelone said, "they're much more advanced there.") When Angelone wiggled his fingers about the level of his temples, Don saw only the right finger move. This was as before. However, when he wiggled his fingers about chin level, Don still didn't see the left finger. This was different. Angelone and Don both claimed some vision and recovery of the left middle field last spring (though I had doubts). Now, there was no doubt Don's left middle field was gone. Then Angelone did the most interesting thing. He wiggled his fingers about chest-high. When he wiggled the right finger, Don saw it, and when he wiggled the left finger, Don saw it. But when Angelone wiggled both fingers, Don saw only the right one move. "This is not field cut," Angelone said. "This is hemineglect. The signal from the right side is so strong it is overwhelming the signal from the left side, and you are not seeing it." Don had been talking cheerfully about learning how to drive again. Now, it seemed he had a more serious and more permanent deficit than he had realized. He thought his left feild was recovering. Now it looked like the surgery in July had severed the optic pathways to his visual cortex. From about eye level up, he was blind on his left side. Angelone demonstrated this further. He told Don to look at his face. "Can you see my whole face?" he asked. "Yes," Don said. Angelone put a finger next to each cheek and wiggled only his right finger (in Don's left field). "Do you see my finger moving?" he asked. "No," Don said. "You see, you are not really seeing my whole face. Your brain is filling in half of my face with what it expects to see." But Angelone still encouraged Don to get the special training needed to regain his license. As encouragement, he showed him the "rocket" picture drawn by a woman with a severe right field cut. Only the left half of the rocket was drawn. The entire right half of the page was blank. It may take a while for us to adjust to this. I know that Don performed much better on the tests than he had feared. But they had revealed a deficit he thought he was recovering from. I hope that does not depress him too much. Dr. Angelone then did a series of EEG readings. To accomplish this, he had Don put on a device that Don called "the hairnet." It looked to me like a kerchief tied on the head with a pattern of white circles on it. In fact, each circle corresponded with a contact that read the faint electromagnetic pulses beneath them. Reading were taken while Don had his eyes closed, then with his eyes open (but not blinking), then reading, then performing a simple task. In all the readings, the signals from the right temporal lobe area were more jittery and irregular than those elsewhere. Don discussed how much better he felt being off Dilantin and wondered if the EEG feedback training he was going to resume with Angelone would help him avoid seizures. Angelone seemed to think it would. "Besides," he said, "if you have a seizure, you have a seizure. It is nothing to be concerned about." Don seemed to like this approach. The seizures were no big thing to worry about. If they happen, they happen. He was beginning to see the medication to avoid them as more a problem than the seizures themselves would be.	Don in EEG "Hairnet"
Tuesday, November 30 Before going to bed, I asked Don if he had set the alarm clock for 7:00 so he could take his medication. He said he had. I noticed there was no water on the nightstand, so I told him I would go get him some, which I did. He said, "Thanks" as I put it on the table and turned out the light.
Wednesday, December 1 For some reason, I was especially anxious about Don taking his medicine this morning. It is the final day of the first 5-day round of Temozolomide. I awoke at 7:08 AM; the alarm had not rung. I woke Don, saying, "Did you take your medicine?" He said he had not. "Did the alarm go off?" I asked. He reached over to it and fumbled around with it and it went off. "It was just about to go off," he said, but I suspect he pulled the stopper out and it went off in his hand. He had set the alarm, but not pulled out the stopper. I could hear him stuggling with the packaging for the Zofran, so I went back to sleep. I had two dreams in my light sleep. In both of them, Don had not taken his Temozolomide in time. In the last, the bottle containing the Temozolomide contained not only the medicine, but also two paddolocks with keys and a small comb. I called up a nurse to ask her what the paddolocks were for. "It's to help loosen the bowels," she said. I decided Don would not take the paddolocks, with or without the keys. When I really woke up, it was twenty after eight. Don had not taken his Temozolomide. "Why not?" I asked. "No water," he said. He pointed to his chest. "I think the Zofran is still in there." I rolled over on top of him, reached over to the cup of water I had placed on the nightstand the night before, and gave it to him. "Oh," he said, "thanks." He drank the water, then said he would wait "a while" to give the Zofran time to work. He reached over and took the cap off the bottle with the Temozolomide. We lay together for a while, snuggling, but my heart wasn't really in it. His lack of concern about going off-schedule worried me. Did he think the treatment was the enemy, not the cancer? Or was the medication affecting his memory? This was not the newly-sharp Don I'd seen since he went off the Dilantin, Thalidomide, and Prozac. About quarter after nine, he reached for the bottle with the pills, but missed. The bottle went tumbling off the nightstand and onto the floor. The pills dispensed themselves beneath the bed. It took him a while to retrieve them all. When I asked him how many he had managed to salvage, he said, "Four. Plus I took care of your dust bunny problem." "I don't want to hear about it," I said. It occured to me later in the day that the problem might be the field cut. The night stand is on Don's left, and the cup of water was behind the alarm clock. Perhaps we should switch bed sides so his medication can be on his right, where he can see it and the glass of water at a glance.
Thursday, December 2 When I came home from work, Don appeared agitated. He said that the "guy doctor" had called him. (I assume he meant Dr. Nicholas.) He said Don's MRIs had been reviewed by the full tumor board. "Great!" I said. I was afraid our request had fallen through the cracks. But today was the first Thursday they would have met since the MRI, so I guess it makes sense that Dr. Nicholas called today. "He said Dr. Berger looked at them, too," Don said, "and Dr. Berger said I was a good candidate for implanting radioactive seeds." I thought this was good news, since it meant Dr. Berger had greater confidence that topical treatments were surgically possible, but I could tell the news had the opposite effect on Don. He was upset by it. "I've heard of that treatment," I said. "The seeds sit right against the tumor and radiate it. It's safer because the rest of your brain doesn't get dosed, but I'm not really sure how it works." "Well, they're short-term radiation. I wouldn't become radioactive." "That's good. I wouldn't want you to start glowing." He made a small chuckle and sat down at the dinning room table. "How did you feel when they told you about it?" I asked. "I felt, 'What?! Another surgery?!' I don't like it. If I have to go through another surgery, I'm just as inclined to hand it all up." He has expressed his reluctance for surgery before, but this was the strongest he's ever put it. "You came through your last one pretty well," I said cautiously. "You were up and about in less than a week." "Yeah," he said, "that's true. Berger's the guy." "And this isn't something you have to consider right away." "That's right. The guy doctor said that temodar was the right course of action for now." "Right. We don't even have to look at those other options until sometime in January. Late January. That's nearly two months away." Don made a wry face and I got the message: two months is not long enough; better if we never have to make the decision. And two months is way, way too long, waiting and worrying, looking at yet another craniotomy.
Friday, December 3 Today was Don's first blood draw. As we were sitting at the dinner table eating breakfast, we chatted about our plans for today and the coming weekend. Don stopped suddenly and a worried look crossed his face. Then he put his hand to his forehead, leaned slightly forward, and got very still. I knew this posture from before. "Upset stomach?" I asked. He nodded. "Nausea." He held still a while longer. I got up and went into the bedroom to get a tablet of Zofran. When I got back, his posture had straightened out. He belched a few times. I held out the Zofran tablet. "Maybe you ought to take it as a precaution," I said. He nodded and put it in his shirt pocket. "It seems to have passed," he said. I don't remember reading anything about nausea occurring days after the last dose of temodar, but I decided to look it up in the information I'd gotten from BRAINTMR when I got to work. We got to Stanford around 10:30 AM, Don apologizing that the morning had gotten to such a slow start. As we waited for the phlebotomist (the person who draws the blood), I asked the receptionist for Don's standing blood draw order. She very helpfully gave me a Xerox of it. There were two: one was for blood counts, as expected, but the other was for a Dilantin level check. I pointed out to her that this was in error: Don had been off Dilantin for nearly a month. She thanked me and removed the order. I didn't need the national report to tell me to double-check everything they do to Don. I still remember when the nurse at Marin General tried to give Don medication because he was a "diabetic." It's like Broffman said earlier this week: pity the poor people who have to go through this on their own. It takes "all hands on deck." After the blood draw, I showed Don the way to Lane Library, where he hoped to do some research for Broffman. Then I headed in to work. It was noon before I got there, and no one was in the office. It's very tempting on days like this to spend the rest of the day researching for Don: does temodar cause nausea for the entire 28-day period? if so, shouldn't we get the Zofran prescription refilled? what was the radiation seed treatment Berger was talking about? how does it work? what are the side-effects? would I have to stay away from Don while the seeds were in him? what happens to them after they're done emitting their radiation? But Mark called and reminded me he needed a report I was supposed to write before he could finish a job proposal. Since that job is going to be our chief employment here at Glyphic for the next six months, I'd better get cracking on it. But the lure of the Internet is a powerful lure, especially when you're alone and frightened.
Saturday, December 4 Don had another wave of nausea at breakfast this morning. I wonder if the soy milk is causing difficulties, or if it's just a transient thing?