November 21, 1999 - November 27, 1999

November 21, 1999 - November 27, 1999

Sunday, November 21 The last day of the chorus retreat. We rehearsed in the morning, had lunch together, then cleaned up the retreat site and went our separate ways. I feel better about missing this Tuesday's rehearsal now that I have so much of the music under my belt and in my head. We didn't go directly back to Marin, where we would spend the night at Chris's. Instead, we went a little north of Geyserville to Hopland, and then took the road to the Fetzer winery. I knew Don would like the large organic gardens there, plus we could pick up some wine for Thanksgiving. Don greatly enjoyed the gardens, even though we toured only about a third of them. I say a type of rosemary I would like to grow in my herb garden: white rosemary. Don got a few ideas as well. We bought two bottles of red wine on sale and a muscat that I knew would be good (even though it was expensive). We got back to Mill Valley a little later than we had told Chris we would, but he waited for us anyway. We all went out to dinner, then we saw Dogma, which we all found quite funny. I told the guys I would interpret any Catholic arcana they needed explained, but they didn't need any help. Binky, Chris's cat, was uncertain of our status when we returned. At times, he treated us as his loyal subjects, as is proper, and at other times, he regarded us as invaders. However, so long as Chris paid him proper homage, he seemed satisfied (though he took the opportunity of perching on Chris's shoulder to finally explore the tops of the cabinets). Our visit with Chris was relaxed and pleasant. Perhaps we can repeat it if Don needs to come back to Marin on a regular basis.	Chris and Binky
Monday, November 22 Don and I visited sociably with Dan and Marilou while we waited to be seen by "Dr. Prados." It is now clear that Dr. Prados is no longer our doctor. We will be seeing a Dr. Nicholas, who joined the practice last month. As we sat in the waiting area, looking out at a gorgeous day, I bet Don that we would not be seen for our 1:00 PM appointment until after 2:00. Wisely, Don did not take the bet. We weren't seen until about 2:10. Dr. McNeil saw us. She is very pregnant, and by the time we come in for the next MRI in another two months, she will have given birth and be home with her new child. She was her usual enegetic self. She said she was going to go over the MRI and treatment options with us because Dr. Nicholas was backed up. (The doctors are always backed up. I don't think we've ever gone to an appointment that has started at the scheduled time. We are always on time; the doctors are always backed up.) Dr. McNeil had bad news for us. "There is evidence of active tumor," she said, "and we need to attack it as such. It doesn't seem like the Thalidomide is working as well as we'd like." She showed us the MRIs from September and from this morning. An area in the medial temporal lobe about as wide as a quarter and as thick as a dime - though more irregular in shape - was glowing brightly in today's pictures. In September, this area was a slightly darker shade of gray than the surrounding healthy tissue. I pointed out that the size of the area did not seem to have changed, just its "brightness." "The brightness is caused by the contrast agent leaking," she said. "Earlier, the September MRI had a dark area that's now bright. It may not have grown, but leaking dye indicates it's more active. Now it's inflaming things enough to break the blood brain barrier and cause brightness. We need to change the plan." I asked how large an area showed activity. She examined the pictures and consulted a scale and concluded the "active tumor" area was 2.25 cm x 1.25 cm x 2.50 cm. She then started to outline the chemotherapy options. She said BCNU and Temozolomide were the most likely candidates, and started to describe BCNU: BCNU is a nitrosoureate. Dosages are six weeks apart with a scan every six weeks. Dosages are administered as "infusions," which means IV at a doctor's office or clinic. It's the oldest treatment and has been around for about twenty years. The most common side effects are: Nausea, which can be prevented with medication (Zofran). Fatigue, not as bad as the fatigue you get from radiation, but more continuous, and more subtle. Decreased blood counts. All blood cell lines decrease. The decrease in red blood cells can cause anemia. The decrease in white blood cells make you more susceptible to colds. The decrease in platelets means you may have bruising, and cuts and wounds may heal more slowly. The most serious side effect is lung problems. In rare cases, you can develop pulminary fribrosis, which can be life-threatening and the damage can be permanent. But pulminary fribrosis is rare. On the other hand, after four rounds, nearly everyone has a decrease in breathing volume, though sometimes the effect is so subtle the patient is unaware of it. After listening to this description, Don said, "I started on a low dose of Thalidomide and worked up to 400 mg. I've been at that level for about a month. The low dose of Thalidomide might be a factor." "Yes," Dr. McNeil said, a bit uncertainly. I was a bit baffled, too. Don's comment didn't seem to flow from what the doctor had just told him about BCNU. She had already said the Thalidomide didn't seem to be working. "But I tolerate it well," he said, "So I'd be okay continuing it." Now I understood where he was going. It was as if he were saying, "Maybe the Thalidomide is all we need. Maybe if we up the dose, I can just continue taking it and avoid the scary side effects. I know the side effects of Thalidomide and I can handle them." In a way, he was also expressing the hope that things hadn't taken so drastic a turn for the worse that a whole new regimen was called for. Dr. McNeil gently dissuaded him of this. "I think you have to change," she said. "So, is BCNU it?" he asked. "No. It's just the first one I presented. There's also Temozolomide," and she proceded to describe it: Temozolomide has just gotten on the market, getting FDA approval last month. It's pills that are administered orally, not an infusion, so it's much easier to take than BCNU. You take it for five days, then have your blood counts taken three and four weeks later before you take it again. Its side effects are different from BCNU: It is better tolerated by the bone marrow than BCNU, so there's less decrease in blood count (but blood levels still must be checked). It does not cause the lung problems seen with BCNU. Nausea is certain but controllable with anti-emetic. Constipation is a common side-effect. Don took very little time deciding. "I'll go with the Temozolomide," he said. "I would like to research treatments on the Internet," I told the doctor, "but I don't want to go down any blind alleys. Are there were any treatment options that are ruled out in Don's case, that I shouldn't waste my time on?" "Yes," she said. "Because of its closeness to the brain stem, gamma knife treatment is ruled out. If the gamma knife treatment caused any swelling, it would press against the brain stem. That would have serious effects." "Anything else?" "Any kind of topical treatment," she said and moved over to the films. "The usual topical treatments are gliadal wafers, which are another way of administering BCNU, radioactice seeds, and gene therapies. But the active area is right up against your cerebral spinal cistern," and she showed us the place on the film. "Anything we tried to topically apply there would get washed away into the cerebral spinal fluid, so it wouldn't actually sit on the tumor, and it might lodge somewhere else where it affects healthy brain cells instead of the ones we want to kill." "What about PVC?" I asked. "You mean PCV," she said. "The 'C' in PCV is very much like BCNU; it's CCNU. PCV is better for oligodendroglioma than for glioblastoma." "By taking Temozolomide now, is Don ruling out treatments that might be available in the future?" "No. First treatment trials are ruled out, of course, but that would be true whatever chemo you took." "Since this area is where the tumor already was, I guess you wouldn't call this thing a recurrent tumor." "No," she said. "It's disease progression, not recurrence." She said that it was time to bring Dr. Nicholas in and to set up a course of treatment. I was beginning to realize we weren't going to make the opthomalogist appointment in Mountain View at 4:00. I excused myself and went out into the hall to make the call on Don's cell phone. They said they could hold the appointment until 4:30, but after that, we'd have to reschedule. I went back to the examining room, where I was surprised to find Don sitting alone. I sat next to him and held him. Dr. Nicholas and Dr. McNeil came in soon after. I explained about our appointment at 4:30, and Dr. McNeil went out to make sure Jane could schedule a blood draw. It was important to have a baseline on Don's blood cells before he begins taking the Temozolomide, since it might throw them out of whack. Dr. Nicholas asked Don if he had experienced any return of the mysterious "sunburn-like" symptoms of his earlier use of Thalidomide. Don said he had not, and Dr. Nicholas said we'd just have to chalk it up as a mystery. He then pretty much summarized the same things Dr. McNeil had said. Jane was about to leave for the day (to pick up her mother at the airport), so getting the blood draw order and the prescription lined up was a bit rushed. McNeil wrote up the order for complete blood work and Jane came in to tell us she would call the Safeway pharmacy with the Temozolomide and Zofran prescriptions. Dr. McNeil mentioned that the tumor board would not be meeting this Thursday because of Thanksgiving, but that she would get Dr. Berger's opinion about the usefulness of gamma knife treatment. To get that opinion, they would need this morning's MRIs. I was glad I had gotten them duplicated. We left the originals with the UCSF team and took the copies with us to show the folks at Stanford. I remember asking that the full tumor board take a look at Don's case when they're all back next week, but I'm not sure my request made an impression on anyone, even though I made it twice. Between Jane's rush to pick up her mother and our rush to get to the appointment in Mountain View, I expect it fell through the cracks. We shook hands all around and Don and I left. Don was pretty quiet, and so was I for that matter. I guess we were both pretty much in shock. As we were leaving the parking garage, Don reached out and gently put his hand on my leg. "Lou," he said, "if I die from this thing, I don't want a whole bunch of people around doing all kinds of dying rituals." "Okay," I said, "I understand." "I mean, it's okay if people want to do their thing, but no drama." "Got it. No drama." Don started using the cell phone to inform people on the phone tree what was going on. Neither of us were crying, which surprised me. Neither of us cried any time during the rest of the day, though I felt close to it a number of times. Lying on the couch that evening, I hugged him and said, "I don't want this to happen to you." "I don't want to lose you," he said. "I don't want this to happen to us." We held each other a long time.
Tuesday, November 23 I picked Don up after his appointment with Freinkel. The doctor came out to the waiting area along with Don. He wanted to know why the doctors were certain the newly enhancing area was "active tumor." "They didn't say they were certain," Don said. "They said that it looked like it could be active tumor, and it was wise to treat it as such." "So, it could be necrosis," Freinkel said. "Yes." "What did it look like on the MRI?" he asked. Don shrugged. "They showed us the place on September's film," I said. "It was slightly darker gray than the normal tissue. Then, on yesterday's MRI, it was bright white." "Which could be necrosis," he said. "Yes, it could be. But they're treating it like tumor." "Well, if they've figured out a way to tell necrosis from tumor on an MRI, they should tell the rest of the universe. It's something we'd all like to know." This was vintage Freinkel: sardonic and dismissive. Yet I knew from my web searching that there were imaging techniques that distinguished tumor from necrosis. Did he not know about these? Or did he want us to keep channeling our thoughts in a positive direction? Although I found it irritating, Freinkel's skepticism seemed to work for Don. From then on, whenever he spoke to someone about yesterday's MRI or the upcoming chemotherapy, he would always say, "It could be necrosis or it could be tumor. They're treating it like active tumor to be safe." On our way home, he told me that he had spoken to Freinkel about his dissatisfaction with the anti-depressants. "I want to be in my life," he said, "not a spectator of it. I know yesterday's news was devastating, but it felt like it was happening somewhere over there, outside me. I want to experience my emotions, I want to be in my body, whatever it's going through." When he told him that, Freinkel agreed to Don's stopping the Prozac and BuSpar. He didn't give him a step-down schedule, and becuase of David's recent seizure I had some grave doubts about that. However, a web search and a review of the PDR printouts showed no risk in going "cold turkey," so I raised no objections or warnings. That means between now and when he starts chemotherapy - which should be sometime this week, as soon as Prados's office gives us the go-ahead - Don will be completely drug-free. For the first time in eleven months, no chemicals will be tweeking his brain chemistry. Just in time for Thanksgiving, too. That evening, we went to dinner and a lecture. The dinner was delicious - and Don's friends paid for it! Jennifer, Sara, Mimi, Waz, and, briefly, Jnani were all there. The table was full of happy chatter, and very nice pre-holiday kind of celebration. The lecture by Mark Rennecker was quite interesting for a number of reasons. First, I got to see Mark for the first time. He does, indeed, look like a Greek god: tall, long blond hair, broad shoulders, pectorals that made a good impression despite being draped in a rather formless turtleneck, a deep, rich voice, a quick smile. His main point was that the biggest enemy of cancer patients was not false hope but false hopelessness. He described many new approaches to cancer treatment, some involving such obvious but overlooked factors as when in a woman's menstrual cycle is breast cancer surgery the most effective and what time of day (or even night) is the best time to administer some chemotherapies. During the question and answer period afterwards, I asked if there was any imaging technology that distinguished necrosis from active tumor in brain tumors. He said yes, there were two: a type of PET scan and MRI Spectoscopy (MRS). I had heard about the specialized PET scan from the BRAINTMR list, but the MRS was news to me. Mark said Tim Cloughsey, a name I also recognized from the BRAINTMR list, was dong work on these methods down at UCLA. Don leaned over and said to me, "UCLA. I could do that. If this thing is still uncertain on the next MRI, let's do that." After the lecture, people mobbed Mark with questions. Don wanted to say hello, but was mobbed himself by friends who hadn't seen him in nearly a year. While Don was dealing with that group, I hung around Rennecker until I saw an opening and introduced myself. "Thank you for all the material you send us after the hemorrhage," I said. "I'm sorry about the mix-up around the brain surgery," he said, referring to his phone call in the middle of Don's July craniotomy. "That's okay," I said. "You were trying to help." What he had been suggesting would inded have been helpful, if only it had be presented to us a day earlier. Then, Don could have been fully involved in the decision (instead of unconscious), and all the arrangements for cryogenic storage, special courier pick-up, and lab analysis could have been made, instead of trying to cobble them all together before Berger finished his work. Don finally managed to break away from his crowd as Mark was already out of the hall and heading for the stairs. Don came to get me to try to pull me back into the hall to introduce Mark, not realizing he was already outside. When I pointed to Mark, Don looked at him and said, "Oh!" That got Mark's attention. He turned to Don and lit up like a searchlight. He was so glad to see him and to tell him how much he liked the cancer updates Don was doing from home. "I think guys like you and Keith Block must already be getting this stuff," Don said. "It's already in places like JAMA and Nature." "Yeah," Mark said, "but we never read that stuff." Don got the biggest kick out of this. In fact, Mark quoted articles Don had sent him twice in tonight's speech, and earlier in the evening, Michael Learner, head of Commonweal, had complimented Don on the Cancer Watch work. "It's exactly what we needed," he said. Don practically glowed. At last he was doing some real good in the world again.
Wednesday, November 24
Thursday, November 25 We had six friends over for Thanksgiving: Curtis and Mike, who told us all about their plans for moving into their new house next weekend (and Mike told me about the hot tub he wants to sell); Van and Phillip, who were at the Chorus retreat (Van's a baritone and a real sweet guy; Phillip is his partner and very quiet); Doug, a member of Different Spokes (though he and Don were not close friends); and Jim, who came all the way down on Caltrain carrying a huge salad and poached asperagas. We ate till we burst and then had dessert. Twice. That evening, after everyone had gone home and the candles were burning low, Don and I sat quietly on the couch together. Tears started edging their way into my eyes, threatening to spill over and down my cheeks. I remembered how much I wanted Don to be with me last Thanksgiving, and how angry I had been at him when he invited me up to his place instead. I had asked first, hadn't I? So I refused to go and instead had about twenty people over, more than the house could really handle. The Wednesday before the feast, I was complaining about this and Mark had asked me, "You love him don't you?" "Yeah," I answered warily. "So why don't you go up there and spend Friday with him?" Why hadn't I? Why did I mope at home instead, feeling wounded and betrayed? Such a waste of time, time we could have spent together. Foolish! Stupid! And now, here we were after all. Could I have one more, please? I thought. Could we please have one more Thanksgiving together? The tears did spill down then, but I wiped them away. It's no use rehearsing the future.	The Thanksgiving Crowd (minus Jim, who left early, and Doug)
Friday, November 26 Don and I went Christmas shopping today and got the only things we're going to get this year: cards. He got about 20, and I got about 200. I think perhaps he has the better system: only send cards in response. But I think the many people I wrote to last year need to be updated on Don's progress. Plus I want to announce our domestic partnership to the world. Seems a fittingly optimistic note with which to end a horrible year at the end of a dreadful century on the dawn of a new millenium. We also bought Don a new backpack at Eddie Bauer. He has decided he doesn't like the shoulder satchel after all, though I think it adds a stylish note to his appearance. He says it pulls him too much to one side. He selected a good model (on sale, even), and then started walking away from me. At first, I thought he was looking for a sales person. But as I watched him, I realized what he was doing. He was following the wall on his right all the way around the store. He was looking for the cash register. If he had looked left from where he had started, he would have seen the counter just twenty feet away. Instead, he circumnavigated the store, passing the entrance, and coming around behind the counter, where he stood, waiting to get their attention. They, of course, were busy with holiday shoppers. One of them gave him a nervous glance over his shoulder. I walked up on the customer side of the counter and got Don's attention. "You're on the wrong side of the counter," I told him. Unfortunately, in order for him to hear me, I had to speak loud enough for several other people and the clerks to hear me, too. He let out a little yelp, looked very sheepish, and came around to the proper side. We left the Stanford Shopping Hospital and Retirement Mall and headed home, stopping by a bike store so Don could buy a tire repair kit and an inner tube to fix his flat tire. He's talking more and more about riding his bike again. He's even planning on going to a clinic that will teach him how to drive with his field cut. Lastly, we stopped by Blockbuster to rent a video. I was hoping to get Toy Story so we could go to the sequel tomorrow (Don has never seen the original), but it was all gone, so we rented Waking Ned Devine. It was a good choice. We laughed several times, and it had a warm and happy ending, treating death not as a threat and terror, but something more like a devine practical joke.
Saturday, November 27 The alarm went off at 7:00 AM. Don dutifully turn it off, reset it for 8:00 AM, then struggled with the Zofran packaging. I eventually had to help him get the tablet out of the plastic. He took it, and we went back to sleep. The alarm went off at 8:00 AM. Don turned it off again, then studied the bottles. The pharmacy had packed one bottle for each day of his chemotherapy. Each bottle contained one 250 mg pill, one 100 mg pill, and two 5 mg pills of temozolomide. Because it came in three sizes, the pharmacy had charged him three co-payments. It made no sense, since it was one presecription, but we didn't fight it there. (I'll fight it out over the phone later.) This was the temodar (temozolomide). The stuff is guaranteed to make you nauseous, which is why Don took the Zofran an hour earlier. I got up and went to the bathroom, then to the kitchen to put on the tea kettle. Then I suddenly remembered something. I was ashamed I had forgotten it. I went back to the bedroom and curled myself around Don. He had not yet gone back to sleep. "Happy anniversary," I said in his ear. It took him a while, then he said, "Oh, yeah." It was three years ago on the Saturday after Thanksgiving that he and I met at a Body Electric workshop. "We should do something to celebrate other than chemotherapy," I said. We snuggled for a bit, then he fell asleep. Although we had thought we might go to FrontRunners this morning, it was drizzling out. 9:00 AM came and went and Don was still sleeping, so I let him. I think we'll see Toy Story 2 this afternoon. That should be fun. We did see Toy Story 2 and both of us enjoyed it. Later that evening, while sitting at the dinner table, Don told me what went on in the examining room when I went out to call the opthomalogist. "Dr. McNeil came over and gave me a hug," he said. "She said she thought I looked pretty devastated. I was very glad she did that. She seemed unafraid to be there for me, to be open to the feelings." This is the sort of stuff ISHI and Commonweal work so hard to accomplish. Then he told me, "It's a good thing I went off the Thalidomide. I was beginning to get that feeling again." "What?" I said. "The neuropathy?" "Yeah, I think so. But not as strong as before." I recalled Dr. Nicholas specifically asking him about this on Monday, but he had said nothing. He had successfully concealed a symptom from his doctors once again. I wish he wouldn't do this.

© 2000 Louis Flint Ceci / ceci@best.com