August 29, 1999 - September 4, 1999

Sunday, August 29 Bo came for a visit today. He had dropped someone off at SFO and called us sometime after 9:00 AM asking for directions to my house. We were already up (and fooling around) when he called. I gave him directions, and we both managed to be out of bed by the time he arrived. We had brunch at Hobee's, which he agreed supplied ample and delicious food. Unfortunately, the service was dreadful. The new "fall crew" had just taken over (Stanford has just begun classes), and everyone was inexperienced and inept, though eager. We had ordered one coffee, one hot tea, and two small orange juices. We got two coffees. We sent one back. Sometime later, the tea arrived. As there was no cream on the table for either the coffee or the tea, I went looking for some. Our poor harried table assistant (who was not our waiter) was still trying to recover from having the coffee sent back and two small orange juices prepared in its place. She didn't seem to know where the small orange juice glasses were. Then I came along with my demand for cream and thoroughly threw her off her rhythm. She tried to pour some cream into a small pitcher only to find the carton was empty. She got a new carton, but got it only partly open. As a result, when she tilted it, cream gushed out in tidal waves, overlapping the pitcher and making a mess on the floor. I said that was fine, I had enough, and returned to our table with a dripping pitcher. Sometime later, she arrived with two small glasses of orange juice. After our food arrived (miraculously intact), Don expressed the wish to hold his next birthday party at the Purple Gate and asked Bo if he could use the house. Bo said he might not be living there by then. His new position with Full Circle means he will be spending more time in San Rafael, and he wants to move to "the other side of the mountain." This brought up the topic of how Bolinas folks regard "the other side of the mountain." Bo told us that Jennie, one of the local crazies, had recently died. Whenever Jennie saw Bo, she would snarl, "Damned tourists." This despite the fact that Bo had lived there for more than five years. "I hope this doesn't mean Bolinas is losing its supply of crazy old ladies," I said. "Oh, no," Bo said. "There's still Jane." Jane dresses in twine and newspapers. "Its people like her that keep the tourist population down." Don had his own Jane story to relate. "Jane once came up to me and asked, 'Are you going over the hill?' I said yes, I was. So she said, 'I want you to deliver this note to someone,' and she gave me a scrap of paper. It was really just the back of a cigarette pack." "What did it say?" I asked. "'Don't kill Jane.'" "Wow," said Bo. "Did you deliver it?" I asked. "No." Don laughed and looked a little sheepish. "Well," I said, "it seems to have worked anyway." About this time, our table assistant tried once again to deliver a second cup of coffee. We sent it back again, but Bo expressed a desire for some coffee cake. So naturally enough our waiter soon stopped by and gave us the bill. We decided it would be foolish to ignore this sign and paid it and left. We went to Glyphic World Headquarters so Bo could use the Versateller (and so I could show off the office), then did a brief walking tour of downtown Mountain View. Don was happy that this led us in the direction of Red Rock Cafe, where he ordered a latte. Bo was equally pleased to see that they offered coffee cake, so his needs were met as well. Then we drove back to my house and Bo bid us farewell. He was going to visit a friend in Redwood City and two more in Brisbane on his way back to Bolinas. The previous night, I had pointed out to Don that the Nordic Oil Keith Block had sent him was fortified with Vitamin E. In fact, it contained 167% of the adult daily requirements of Vitamin E. "Isn't Vitamin E an anti-oxidant?" I asked. Don agreed that it was. I pointed out that the other ingredient seemed to be just cod liver oil. Don said he thought he could get that at Whole Foods. So this evening we went out and got some. The nutritionist at Whole Foods was surprised when I said we were looking for something without anti-oxidants. "Usually, people want all the anti-oxidants they can get," he said. I said that we didn't want to counteract the ionizing effects of the radiation therapy Don was getting. He said that that made sense. He then suggested flax seed oil, which would have the same nutrient value as cod liver oil, be slightly less expensive (and less smelly), and contained omega-3, -6, and -9 fatty acids, whereas the cod liver had only omega-3. (He didn't mention it and I didn't think of it at the time, but flax seed oil is also vegetarian; you can't get cod liver oil without squeezing the life out of a couple of cods.) "Keith [Block] knows I'm already taking flax seed oil," Don said. "Do you know why he suggested cod liver oil as well?" the nutritionist asked. "No," said Don. I often feel frustrated about Don's dietary supplements, and this is one of the reasons why. I don't know why he's taking some of the supplements - what their purpose is, what effect they are supposed to have. For all I know, half of them merely counteract the effects of the other half. I asked about this when Don began taking the herbal supplements recommended by Dr. Block and by Broffman. He said he would keep on top of it, but like many things Don has meant to do, keeping on top of his supplements has eluded him. He wouldn't have known the Nordic Oil contained Vitamin E, which he has deliberately stopped taking, if I hadn't pointed it out to him. Don got the plain cod liver oil and some algae extract, which he took later that night. It turned his tongue black and part of the kitchen sink and floor green. I had to laugh at him just after he'd taken it. "It looks like you've taken a hit off a toner cartridge," I said. "What's it for?" "I dunno," he said, giggling. "Protein, I guess." One of the things Don has been unable to follow through on is giving me a copy of his poetry. He has repeatedly said he wants me to have one. He even wants me to read through it to see if it hangs together and has a sense of continuity. This evening, I asked him if he still wanted me to do that. He again reiterated that he means to give me a copy. "I feel a voice in your poetry," I said, "a being who knows existence is impermanent, but wonderful all the same." "Yes. One of the joys of my practice of writing has been finding my voice. It's as if I were talking to a friend. Sometimes, that friend is me. I think someone could read my poems and, even if they didn't know me, they would get a real sense of who I am." This got him on the topic of the future. He had spoken to Satchitananda earlier today, and his former guru had told him that "everything was going to be fine." "I wanted to say to him, 'Define "fine,"'" Don said. He laughed a bit, then said, "I know that if other people have recovered from this, so can I. Yeah. This is something I can do! I've already had one miracle. I have a strong body, a persistent body, and lots of people holding the pattern for me. But if the universe has something else in mind, hey, I'm ready for that, too." He laughed. "Well, maybe not ready. I don't think anybody's ever ready." "It's like that old joke," I said, "the inscription on the tombstone: 'I expected this, but not so soon.'" "Yeah. But whatever happens, I know I can face it, because I know you'll be with me." "Count on it. And I'm planning on you being with me. A long time." I looked at the clock then and told him he would have to go to sleep now if he wanted to do his half hour of meditation in the morning and still get in nine hours of sleep tonight. I helped him put his glasses on the bedside table. "You've got your kitty on your shoulder," I said, indicating the beanie baby Katherine had given him in Santa Rosa. "You've got your brain," I said, indicating the squeeze toy in his right hand; he waved it up and down. "And you've got a man who loves you," I said and kissed him on the forehead. "And he's the man I love," he said. "Now, there's a miracle," I said, turning out the light.	Waiting in Line at Hobee's
Monday, August 30 I had taken it upon myself to call Dr. Forrester and Dr. Prados's office to keep them up to date on Don's condition. Don was doing this on a weekly basis, but I knew from experience that there were often things Don would forget to mention. I meant to do my update every other week, but was so busy last week I neglected to do it. So I called them the first thing this morning after getting in to work. Of course, I wasn't able to speak to them directly, but they both called back fairly quickly. Dr. Forrester said she had spoken to Dr. Berger about Don's forgetfulness. "He often doesn't remember that he's spoken to me just the day before," she said. Berger reassured her. He said that, given Don's right-handedness, the memory loss should not be due to surgery, but to increased intercranial pressure prior to surgery, which would have had a global effect on his brain. Dr. Berger told Forrester that Don's memory should recover in about six months or so. However, he also said that Don's apraxia - which leads to things like not understanding bus routes and getting lost while walking home - might not recover. "He's going to have to learn compensatory behaviors for the visual-spatial deficits," Dr. Forrester said. She then went on to state her own reaction to Don's tumor. "It's been shocking and humbling that we didn't find it sooner," she said. She reiterated what we had heard before, that tumors don't bleed. It was lucky that Don had had someone who noticed a change in his behavior and brought him to a hospital. I felt I ought to tell her that I was noticing some worrisome changes in behavior now, too, so I did. She asked me for specifics, so I mentioned the memory loss, though Dr. Berger has said to discount that, and I mentioned Don's difficulty in keeping his balance when bending over, and the unevenness in his gait. "I think you should contact the radiation team," she said. "You should ask them what is expected from radiation therapy and what might be signs of an early recurrance. Perhaps there should be a follow-up MRI soon." "Thank you," I said. "I thought I was just being hyper-vigilant." "It's understandable if you are." She reiterated her own sense of being shocked and humbled by Don's experience. "But talk to the radiation team," she said. "Get them in on this." "Thank you. I will. I've also noticed some sleep apnea." "Like what?" "Last night, he had two episodes where he stopped breathing for twenty seconds. These happened within minutes of each other." "That's significant and should be reported," she said. She then went on to explain Cheyne-Stokes respiration. I was having a hard time understanding what she was saying. She was speaking perfectly clearly, but it was like December all over again, when Shankari called me on a Saturday morning to tell me Don had had a stroke. I just couldn't take in what she was saying. But I know she had said, "early recurrance." I had heard that. After I had said, "What?" for about the third time, Dr. Forrester said, "Just tell them what you've told me." We were about to say good-bye when I remembered the other function of this call: keeping the information flowing between doctors. "Have you gotten the latest Dilantin levels?" I asked. "Yes," she said, and told me there were at 8.5. "Isn't that under therapeutic level?" I asked. "Therapeutic is usually between 10 and 20," she said. "What did Peterson's office say?" "They said everything was fine." "Well, then, it must be fine, if it's fine with them." I promised to keep her updated on what the radiation team said, then we said good-bye. The call from Dr. Prados's office came shortly after that. Jane is the nurse on Mondays, and she started by answering some questions Don had left on her machine. She said that the protocol called for raising the Thalidomide to 600 mg. a day starting today, but she said Don had several options. "He can remain at 400 mg., go up to 600 mg., or increase the dose by only 50 or 100 mg.," she said. She also reassured me that the presecription we'd gotten in the mail would still be good when we needed to get more. I told her I would present the dose options to Don tonight. Then I told her about my conversation with Dr. Forrester. "All those symptoms are classic signs of Dilantin," she said. "What's his level?" "8.5. It's low, not high." "When was it taken?" "I think it was on the 24th." (It was actually on the 18th.) "Where was the tumor?" "Temporal-parietal. Right side." "Well, the short-term memory could be an effect of the radiation. There can be long-term memory effects, but we usually don't see those until later. Do a new Dilantin level. And perhaps he should go back on the Decadron until the end of radiation. A new MRI should be the last thing, if things get worse or if the Decadron doesn't help." I gave her the number of Don's pharmacy at the Baily Park Safeway so she could call in the Decadron prescription. She said he should take 2 mg. twice a day. I said I knew he was a little concerned about taking steroids, so I would present it to him tonight, along with the Thalidomide options. "If he takes the Decadron, he shouldn't increase the Thalidomide," she said. I worked late so Don was already in bed, nearly asleep, when I came home. He had changed the sheets and was lying on them, propped up on his pillow, wearing a dark green sweatshirt. I felt I should congratulate him on his successful battle with the fitted sheet. He finds it frustrating, often getting it on the wrong way. But the bed looked perfect. But instead of acknowledging his effort, I told him I'd talked to Forrester and Jane. I told him Jane suggested restarting Decadron, and had phoned a prescription into the Safeway pharmacy. "Well, the Decadron will make me feel perkier," he said. "She said if you started the Decadron, you shouldn't increase the Thalidomide," I told him. "Do we have enough?" "We have enough for the next two days. If you want to take it, we'll have to pick up the prescription." "Maybe we could get it tomorrow at Stanford." "The Decadron?" "Thalidomide." I couldn't tell if he was confused or I was. I said, "Let's wait until you've used up some more. I don't know where we'd put more boxes of Thalidomide." He was quiet for a while. I suddenly felt very tired. I told him to think about the Decadron and tell me in the morning if he wanted to start taking it again. I didn't tell him about "early recurrance." I didn't want to mention it.
Tuesday, August 31 On our way to radiation therapy, I told Don that Bo thought he was looking pretty good. "He said he thought you were more interactive and 'there' than he's seen you anytime since you came back from Kentfield." "People say I'm more myself than I've ever been since before the hemorrhage. I can't really tell. I don't remember it that much." "You were pretty reclusive, hiding in your room. It was kind of spooky." "Some of my friends really bought into the 'danger to himself and others' thing," he said. "They started treating me like someone even I didn't recognize." While Don was in the treatment room, I asked the radiation technician if we could see Dr. Hancock or Dr. Mehta today after the therapy. I had hoped Mehta would call me yesterday, but he did not. We were told to wait in an examining room after the treatment. "I'll page Dr. Mehta," the nurse said. I turned to Don. "I asked them twenty minutes ago if we could see Dr. Mehta. They're just now paging him?" "Well," he said, "you wouldn't want him to wait." We overheard someone say Dr. Mehta wasn't here today. We exchanged looks. Finally, someone did come in. It was Dr. Bevins, another "stand-in." She apologized that Dr. Mehta hadn't returned my call and wasn't available. "What did you want to ask him?" she said. I told her, "I've been noticing some changes. Don's memory is worse, he's having trouble with his balance, and he tends to list a little when he walks. Dr. Prados' nurse, Jane Rabbit, told me yesterday that these could be due to Dilantin, but his Dilantin level is low, not high. Plus, he's had periods of sleep apnea where he stops breathing for up to twenty seconds." I didn't want to say the next thing in front of Don, but I didn't see any way out of it. "Don's primary care physician, Dr. Forrester, is worried that these might be signs of early recurrence. She said I should bring them to your attention." Dr. Bevins agreed. She filled out a bloodwork form to have Don's Dilantin level checked and she said she'd be sure that Drs. Hancock and Mehta were given the information I gave her. "I also think it would be wise to schedule an MRI, just in case," she said. "They might not decide to have one, but it's easier to cancel one than to schedule it." She apologized again about our difficulty in getting in touch with our doctors, then she left. "Early recurrance?" Don said. "That's not what I had in mind." "I'm sorry," I said. "Perhaps Dr. Forrester is just being vigilant. And Jane said it was probably due to swelling, not recurrence. That's why she recommended the Decadron." I also told him about Forrester saying she was "shocked and humbled" by the fact that so much medical attention had been given to Don, yet still they did not find the tumor earlier. I said, "I don't think she wants to run the risk of missing it a second time." "'Shocked and humbled'?" he asked. "She made a point of saying it twice. It's sad. I think what she meant to say was, 'I'm sorry,' but a doctor can't say 'I'm sorry' in our society without being open to a lawsuit. I think that's really sad, because sometimes saying 'I'm sorry' can be a really healing thing." He was chewing on his fingernails. "I wish I could tell you not to worry," I said. "Too late." "I'm sorry."
Wednesday, September 1 Dr. Mehta examined Don after his radiation treatment today. He had us list the symptoms I'd mentioned to Dr. Bevins again. He was puzzled. He said that if it wasn't due to a high Dilantin level, he didn't know what it was. I told him Don's level was low, not high. He went out to check it and came back admitting that it was low. However, he said he saw no cause for alarm, and told us Dr. Hancock would see us on Friday.
Thursday, September 2
Friday, September 3 This is the start of Don's last week of radiation therapy. the back of his head has gotten quite patchy and the fatigue is becoming less easy to ignore. He says his legs feel heavy and that he wants to lie down, but he doesn't feel tired or sleepy. The sensation is more tiresome than tired. At the hospital, we found out that radiation therapy is closed for the Labor Day holiday. Can it already be Labor Day weekend? Where has the summer gone? Because of the holiday, Don's treatments will end on September 10, not the 9th as I had thought. September 10th is my father's birthday. I wonder if I will get to see him. He was planning on being on vacation with Shirley in Monterey that weekend. I was hoping he might have contacted me by now to tell me what his plans are, but he hasn't. Perhaps something has come up again and he is unable to make it. After Don's treatment, we met with Dr. Hancock. He started out on a cheerful note: Hancock: How's your hair? Don: It's beginning to look trendy. My friend Bo, who deals with shall we say "troubled youth," says it looks like one of his kids got loose with the clippers. But it has given me license to do what I've always wanted to do: buy a fedora. H: It looks stylish enough. D: Since Monday is a holiday, what does that do to the end of the treatment cycle? H: We just add on to the end. It looks like you've about four treatments left. It's gone by awfully quickly. (Yes, I thought, how the years have flown!) D: I suppose you've heard about Lou's observations. H: Yes. There's some short-term memory loss. D: And unsteadiness, and apnea. Dr. Mehta thought that another bleed might be the cause, but he did the usual physical tests and and saw nothing. He also thought a high Dilantin level might be the cause, but I don;t have a high Dilantin level. To me, the unsteadiness and balance problem are how I feel the fatigue. H: Are you on Decadron? D: Yes, 4 mg., divided [into two doses]. H: Did you start taking it because of this constellation of symptoms? D: Yes. H: Have you noticed any difference, any improvement? D: Not really. Dr. Hancock then had Don walk across the room and extend his arms with his eyes closed. He then tried to interpret what he saw for us. H: It's hard to know what's causing the memory problems. Some people get very sleepy nine weeks after treatment. But is this recurrence? It's hard to know. MRIs can have transient abnormalities and give misleading readings. The mylin can change its appearance from light gray to dark gray and look like tumor activity. In children's tumors, there's usually a black-out period of a couple of months to avoid misreadings. Are you still on Thalidomide? D: Yes. H: I have no expertise in it. It's a tranquilizer, and other tranquilizers, such as Valium, were notorious for intereferring with memory. I don't know what to expect with Thalidomide. D: I have no way of telling if my symptoms are due to the Thalidomide or the radiation, since I started both at the same time. H: When do you stop? D: The protocol has me taking it for two weeks after radiation ends. H: What you might do is go the two weeks, and then try a holiday from it to see if these symptoms regress. Lou: What will happen after the radiation treatments end. Would we be seeing him again? How often will there be follow-up MRIs? H: I'd like to continue seeing you. When is the next MRI scheduled? D: September 27. H: That's good. You'll probably continue to have MRIs every two to three months. That seemed to end our interview and Dr. Hancock was about to leave when he turned around and asked me, "How did you know he was having sleep apnea?" Don and I had found this same question from Dr. Mehta amusing. Did they think we slept in separate beds? So I tried to be as explicit as possible. L: I go to bed about an hour later than Don does, so he's usually fast asleep by the time I get into bed. As I'm falling asleep, I listen to him breathe. If he stops, it's kind of alarming, so I notice. H: But how can you tell he's stopped? L: I put my hand on his chest to see if it's moving, and I put my ear by his nose to see if I can hear him breathing. It's a good thing he doesn't wake up when I'm in this position. D: I never wake up. H: There is a thing called Cheyne-Stokes apnea, but it's associated with heart disease, and you don't have heart disease, do you? D: No. L: Could it be central nervous system apnea? H: I'm unfamiliar with that. Cheyne-Stokes can also be caused by problems with the brain stem, but that doesn't seem likely in your case. Don and I went upstairs and had breakfast in the Cafeteria. I noticed that Don was using his thumb to push his scrambled eggs onto this fork. We'd laughed about the line from Gigi that more marriages had been destroyed by table manners than infidelity. "Use your biscuit," I told him, "not your thumb." "Why not?" he said. "It tastes good." "I guess there's quite a feedback loop there, the tongue and the thumb." "The right thumb is my favorite. My parents were always trying to get me to stop chewing my fingernails and sucking my thumb. They even got some icky stuff to put on my fingernails to keep me from biting them." "I imagine you must have been a willful and difficult child." He laughed. "Actually, I was the perfect little boy. I was their one shining hope for redemption. Certainly, I was for my mother." "Redemption from what? What did she need to be saved from?" "A wasted life." "How can it be wasted if you've had fun?" "I haven't wasted it enough. I need more time so I can waste some more."
Saturday, September 4 We went to FrontRunners in the morning, but because we were late and because I thought Don looked a little weary, I decided to take us on a slightly different route. We walked only two miles, starting in the reverse direction of the usual run, going for a mile, and then turning back. This route has the advantage that all the cute guys are running towards you for the first mile. Too bad the morning wasn't warmer. We had coffee at Sofia's, where a small group of lesbians muscled their way into the line between Don and me. This is unusual behavior among FrontRunners. People are usually much more polite and conscious of other people's needs and social ties. I let them get in front of me once we were inside the door so I could stand next to Don. I know standing in line is difficult for him. Afterwards, we went to Oakland to pick up his mail. Jessica arrived just as we were leaving, so we stayed and chatted with her a while. The medication for her pituitary tumor made her nauseated, so she stopped. I'll ask Sara what she has been using all these years. On our way back to Mountain View, we stopped at the East Palo Alto Home Depot. I wanted to return some light bulbs and check out their nursery and possibly buy some window screens. The people were very friendly and helpful, much more so than at any large warehouse store I've been in before.