Don and I had a delicious breakfast of banana French toast cooked up by Kent and served up by Jessica. Afterwards, Jessica said she was going to clean Don's apartment. He was a little embarrassed about that, but after he went downstairs, I thanked Jessica. I told her that I, too, was doing little things to "tidy up" after Don, like closing doors and drawers. I told her I appreciated her taking the extra effort to do the same for him here in Oakland. "I know it's more than you signed on for when you invited him to live here," I said.
"Hey, it's nothing," she said. "I figure, I've got the easy half."
"Yes," I agreed, "I think we both do."
Don and I went into The City for the Dore Alley Fair. It was the first time Don had been. We ran into three of my friends: Jay, who was out from New Jersey and told me he still hadn't worked on arranging my song; Dennis of Dennis and Michael, my Christmas Angels; and Seth Shapiro.
While at the Fair, I had my fortune told by Theresa using a deck of Tarot. She said I had a tendency to feel slighted, which is certainly true. And that I felt I had to do everything myself, which is also true. She also said that there was some kind of health concern with a loved one (big leap there, talking to a gay man at an S&M festival!). As Don was right there, we told her what was going on with him. She then made the reading apply to both of us. She said there were difficult times ahead, that things would get worse before they got better. But, she said, they would get better. It was just going to take some time. "Good," I told her, "we'll take all the time we can get." She then asked me if I expected to continue living where I was. I said yes, probably until I retire in fifteen years. She said she thought I would be moving to a new home in three years. That was unexpected.
After the Fair, Don and I had dinner at The Patio in the Castro. Don thought the waiter was flirting with us, and indeed he was a handsome young thing. I dropped Don off near a BART stop on Market and took 101 home. The house seemed empty without him.
That evening, my sister Remy and I had a long talk on the telephone. She said if it ever came down to the final stages and I needed somone there to lean on, just call her and she would be on the next flight out. That was very generous of her, considering her financial situation. I thanked her, and told her that if it ever did come down to that, I would take her up on it. I will need some of my family around for emotional support.
1. Jay and Don at Dore Alley
2. Don and Dennis and I at Dore Alley
Dr. Mehta spoke to me on the phone to tell me what to expect this first week of treatment. On Wednesday, we should expect to spend about an hour in the radiation therapy, but the time should be significantly shorter for all sessions after that.
I took this opportunity to ask him about the interaction between anti-oxidants and radiation therapy. He recommended coming off the anti-oxidants. "Radiation creates and works because of oxygen radicals," he said. "It only makes sense" to stop the anti-oxidants.
When I raised the issue with Don, he said that Andy Wiel felt the same way, but that Keith Block thought that was a mis-reading of the research. I haven't read any research on the subject one way or the other. But we had agreed some time ago that Don was to make the final decisions on alternative medical advice. He felt comfortable taking Keith's advice, so I said nothing further. Still, to me, it did not "make sense."
On our way to see Dr. Peterson, Don started talking about the possible outcomes of his illness. He mentioned that Katherine was upset with him at one point when he talked about death. "You shouldn't hold those negative thoughts," she told him.
"I don't think of them as negative," he said. "It's just keeping my eyes open."
"You have to see all that life is sending you," I said. "Otherwise, you get blind-sided."
"Yeah," he said. "I have enough of that already."
"On the other hand, I don't think we need to go so far as my mother has."
"What did she say?"
"Oh, well," I said, feeling a little embarrassed, "she wanted to be sure that I knew it was not going to be an easy death."
"What?! What did she tell you that for?"
"I don't know. Maybe it's just a tendency - and I have this tendency, too - to want to appear to know everything before it happens. I mean, if you predict the worst, and you're wrong, nobody remembers. But if you're right, you get a reputation as a prophet. Also, my mother likes to imagine the worst case scenario. Somehow, it comforts her. I tend to do that, too, but I try to keep it to myself."
"My mother was like that, too."
"Maybe it's a mother-thing. Anyway, I didn't appreciate it. I mean, what am I supposed to do with imformation like that? I mean, aside from the fact that it's wrong - every doctor we've talked to said that, if worse comes to worst, it's actually pretty painless."
"And even if it isn't, there a palliative measures they can take."
"Right. So, what am I supposed to do with, 'it's not going to be an easy death'? Get ready for it? I'm sorry, but that's something I don't want to get ready for. I'll be perfectly happy to be completely blind-sided by it. I don't want to take any of my time rehearsing my grief."
"So, what did you say to her?"
"I said, 'Yes, I know. Thank you for thinking of me,' and left it at that."
We drove on a little in silence. Then I said, "If worse does come to worst, and you go into a coma, where would you like to be?"
Without hesitation, Don said, "A hospital. I certainly don't want to die in someone's home."
"Thanks," I said, "that's good to know. It would be no problem with me if you wanted to use my house, but it's good to know what your wishes are."
"Definitely a hospital," he said. "They know how to handle these things."
Our examination by Dr. Peterson was a little strange. She had gotten none of the case information from UCSF, and so Don had to do a case summary for her, starting with the hemorrhage in December. I filled in a few details when he forgot things. He recounted his valise story from yesterday, initially saying that he had left his valise on the bus, but quickly amending it to say that he only thought he had left it on the bus, when in fact he had left it on the street. He used that story to illustrate the point about feeling overwhelmed occasionally.
Dr. Peterson did the standard physical/neurological survey Don and I are now quite familiar with. She even warned him that he might find the Babinsky reflex test painful. "No," he said, "actually, it felt kind of good." She had him run his left heel along the line of his right calf and vice versa. "That's a new one," I said, which caused everyone to chuckle. (In addition to Dr. Peterson, her intern and her nurse were there.) Then Dr. Peterson asked Don to explain his diagnosis. (Among the things she had not received from UCSF was the pathology report.)
Don: It was a very large tumor. It is an aggressive cancer. The doctors we have seen have said it is incurable, but that people to recover.
Dr. Peterson: What do you mean, 'recover'?
D: That they are cancer-free for a number of years.
P: As far as we know, glioblastoma is a sporadic, random illness. We don't have any way of predicting whom it will strike, or what course the illness will take, other than the survival rates you've been told. The nature of these kinds of cancers is that they infiltrate other cells. Our best therapy is radiation around the region where the tumor was. We don't irradiate the whole brain.
D: What do you know about anti-VEGF?
P: It's an antibody thereapy. It works like thalidomide as an anti-angiogenesis. We don't have access to anti-VEGF here at Stanford. As far as I know, most anti-VEGF trials are for patients with recurrent tumors.
D: Will the radiation keep it from recurring?
P: We hope radiation will keep the tumor from growing. The presumption is that, without treatment, it will grow. So if after the course of the radiation treatment it stays the same size or shrinks, we think we've done well.
D: What about chemotherapy in conjunction with radiation?
P: Timozolamide is one consideration. [I didn't follow the rest of what she said about Timozolamide.] We have a low-dose carboplatin study being done here at Stanford. It works on head and neck cancers. Our current trial intends to enroll fifteen people, and we're already treating thirteen of them.
D: Is carboplatin well-tolerated?
P: Yes. Side effects include nausea, hearing loss, and some bone marrow loss.
D: Do you know how it compares with Thalidomide?
P: No. If you're interested in the carboplatin study, I'll give you a consent form. We believe carboplatin makes radiation work better.
D: I'm already signed up for the Thalidomide study. If that doesn't work, are there other trials available?
P: I guess we've been talking at cross purposes here. If you're already signed up for the Thalidomide study, you can't participate in the carboplatin study. But, yes, if we don't get the results we hope for from the first course of treatement, other trials are available.
D: In the long run, are cancers of this type ever considered controlled?
P: Rarely. The hope is to control it long enough until better treatments come along.
At this point, Dr. Peterson said she would have to get in touch with Jane Rabbit, Dr. Prados's nurse, to find out whether Don was enrolled in the Thalidomaide study or not. All Don was able to tell her was that he had signed "a bunch of forms." I wished I could have been with him to take notes on what went on at UCSF yesterday, but there was no point in worrying about it now. Then Don asked about the side effects of radiation therapy.
P: Fatigue, hair loss, and a redness like sunburn. With some people, there are headaches due to swelling. We would use Decadron again if that happened.
D: Is it bad to take Decadron in the long term?
P: It's bad to take any steroid over the long term.
D: What is 'long term' in this case?
P: More than a few months. One side effect is osteoporosis. But swelling is not likely in your case because so much tumor was removed.
D: I've been in touch with Keith Block, a doctor in Chicago, and he has put me on a series of supplements that include a lot of anti-oxidants. I'm also seeing a Chinese herbalist. I'm telling you this for your information in case any of this might have interactions.
P: I don't have an opinion one way or the other on the anti-oxidants, but you should mention it to the radiation people. Do you have any more questions?
D: No.
Lou: I have a few. One is, the radiologist's report said there was something that might indicate an AV-malformation on the MRI taken after the surgery. Do you have that report?
P: No.
I gave her the report and she found the comment.
L: So, my concern is, will someone be keeping track of that? Follow up on it to determine if it's something we should be concerned about?
P: The report only mentions it in passing, and doesn't seem to think it is significant, but we will keep track of it on all follow-up MRIs.
L: Thank you. I wanted to be sure someone was tracking it. What are the long-term effects of radiation, one or two years down the road?
P: We sometimes see cell necrosis. These show up on the MRIs and are indistinguishable from tumor, so we would have to perform a biopsy to determine what they are. With necrosis comes some memory loss and some decrease in cognitive functioning.
That ended the interview. Don signed a few more release forms and we went down to get his blood work done. While he was in hematology, I went over to the pharmacy to see if they knew where we might get the Thalidomide prescription filled. To my surprise, the pharmacist said they carry it. The prescription would not be enough, though; a special form signed by Prados had to accompany it. After some thought, I presented her with one of the papers Don had given me. It turned out to be the right one. The pharmacist said she would fax both forms to the drug company, and if Dr. Prados was enrolled in the study, they would clear the prescription. As this process would take some time, she suggested I come back in an hour. I told her we'd be coming back tomorrow for the radiation treatment and would pick it up then.
Don had said Jane said the presciption was expensive, so I also asked the pharmicist how much it would cost. "Four hundred and four dollars," she said. Jane was right.
Later that night, we went over the web-site pages dealing with Don's interviews with Drs. Berger, Prados, and Hancock. Don asked if these pages were in public access. I told him no, I thought they were private. He said he thought I should make them public. "There's a lot of good stuff in there," he said. "You take good notes."
"I learned how to take rapid notes when I was a high school teacher and had to judge debates. Besides, since memory loss is one of the possible side effects, I figured a written record would be a good ides."
He smiled. "Good planning skills."
Later, we talked again about how treatment may affect his cognitive skills. "No necrosis," he said. I agreed, then said, "I love all of you, and every change you've been through hasn't changed that. All the you's you've been and all the you's you are."
"But what about all the you's to come?" he asked. "It may be difficult loving them."
"I'll help you love them," I said.
On the way in for Don's first treatment, we wondered why they were unable to give us a schedule for the whole six weeks. Once we were there, it became pretty clear why they couldn't.
The Stanford team - and it's a team that includes radiation oncologists, physicists, technicians, and, judging from some of the equipment, a machinist - has spent most of the time since Don had his CT-scan coming up with a "plan of treatment." This includes specifying down to one tenth of a millimeter the angle at which the radiation will strike Don's head, the number of angles to shoot from, and the number of dossages, and the amount of radiation for each dose, measured in RADs.
The initial plan involved six angles with dossages ranging from 16 to 66 RADs, with a total of 200 RADs for each session. The technicians in the radiation lab mounted Don on a movable slab, then raised the slab and slid it under a machine that looks like a huge C-clamp. Radiation comes out of the "top" end of the C, and a large pad of radiation absorbant material is at the other end. Don's head was precisely positioned using lasers exactly between the top and bottom of the "C." Then the huge radiation machine did something remarkable. Though it looked far too bulky and solid to move at all, it gently and smoothly rotated around Don. At the same time, the slab Don lay on rotated around a pivot point centered on his head. The combined effect was six angles of attack: two on his right side, two coming in from the top of his head, and two from his left side. In addition to these angles, each burst of high-energy X-rays is shaped by thick metal blocks mounted on clear plastic peg boards that are slid into position over the mouth of the radiation machine. These blocks have to be custom-milled for each patient.
Despite all the advanced theoretical work and three-dimensional modeling, the technicians were unsatisfied with the angles they were able to obtain on three of the six planned shoots. I was watching the monitors as they tried several approaches to solving the problem. A discrepancy as small as two tenths of a millimeter was too much for them to tolerate. For each position, they took an X-ray of Don's head to check against the previous images to make certain it was still aligned the way the CT-scan showed it. Each time they took an X-ray, the two of them and I left the treatment room and they shut a huge door that must have been at least eight inches thick.
After the second X-ray, I told Don I was going to pick up his Thalidomide. I went upstairs to the pharmacy to see if the prescription had been filled. It had, and by the time I returned, Don was out of the radiation treatment room.
The head technician said she was going to send the results to the planning team. She was unsatisfied with three of the angles they were able to obtain. She told us to return tomorrow at 9:30 AM, and again on Friday at 9:30 AM. They said treatment would begin tomorrow or Friday, and then continue at 3:15 PM Monday through Friday after that.
Before we left, a nurse told us to wait in an examining room. She said Dr. Hancock wanted to speak to us. While waiting for the doctor, Don opened the Thalidomide packaging. He was uncertain if he should start taking it now or only after the radiation treatment began. He couldn't find the dosage information. The packaging had eight sheets of fourteen 50 mg capsules each, but how many capsules should he take each day? And should he take it every day or only on those days when he got a radiation treatment? There were 112 capsules, which didn't work out to an even dosage over 42 days no matter how we figured it.
A doctor we had never seen before entered the room. He seemed a little confused. So did we. He didn't know which one of us was the patient. He soon determined that Don was, and that he was not the right doctor to see him. He said he would try to page Dr. Mehta and get him in to see Don.
We waited a bit more, then the unknown doctor returned. He appologized, saying there had been some mix-up, and Dr. Mehta was with another patient at the moment. Don said that he didn't really have any questions other than the one about the Thalidomide dossage. Dr. Unknown apologized again, saying he knew nothing of that protocol. Dr. Unknown asked for the name of the UCSF doctor who had prescribed the Thalidomide. I gave him Jane/Margarita's phone number, and he scribbled it on the top of Don's chart.
Dr. Unknown said he would talk to Dr. Mehta about the Thalidamide, and that Dr. Mehta would call us later that day with the information.
That sounded a little doubtful to me. I'd had too much experience with the way information gets lost in hospitals to trust that Dr. Mehta would get Dr. Unknown's message, let alone that he would respond to it and call us. I was so convinced that nothing would happen that I put it out of my mind. I didn't even think about it until we were lying in bed that night, about to fall asleep.
"Huh," I said.
"What?"
"Dr. Mehta didn't call."
"Huh," Don agreed. We were asleep within minutes.
There was a total lunar eclipse that night. Millenialists and at least one of Don's friends had said it was a portent of turmoil to come. "But opportunity, too," she had said. "Wake me up if you see it," Don told me earlier in the evening. I did wake up around 3:00 AM to go to the bathroom, and on my way back to bed, stopped by the kitchen. I stepped out the back door - careful to leave it unlocked behind me - and looked up. The moon had been sharp and clear when we went to bed, but now fog had rolled in and covered up the sky, obscuring the syzygy that lay behind it.
This, too, was not Don's first day of treatment. Instead, the team had come up with another plan, replacing three of the original angles and dossages with slightly different ones. While they were trying these on for size, I spoke to Dr. Mehta, who was looking at the X-rays of Don's skull taken yesterday. I asked him if there were a solid three-dimensional model of the area that would be getting the radiation.
"No," he said, "but we do have 3-D images that we can rotate in the computer."
"Is the entire volume irradiated, or only the fringes?"
"The entire volume of where the tumor was, and then some," he said. He took out the grease pencil he had been using to mark on the slides and drew a sketch on one of them as he talked. "As you know, these kinds of tumors don't have clean edges," he said, drawing a shape on the film like an irregular lemon. "There is also an area of edema beyond it," and he added an aura around the lemon with dashed lines, "and then an area larger than that that may contain tendrils too fine to show up on the MRIs," and he drew spidery lines out from the lemon, beyond the dashed border. He then drew a circle that enclosed all of this: the excised area, the dashed area of swelling, and all the tendrils. "This is the area we irradiate," he said, "to make sure we get even the tumor cells we can't see. Later in the treatment, we'll focus down to a smaller region."
I then asked him about the Thalidomide dossage.
"Didn't Dr. Prados's office call you?" he asked.
"No," I said. I didn't mention that we were under the impression that he would call, not Dr. Prados.
"Well, we don't use that protocol here," he said. He had an odd expression, a kind of half-smug smile, as if he were answering the question, "Have you ever tried beheading a chicken over the wax image of a patient on the night of a lunar eclipse?" He continued, "Since Dr. Prados's office is running the trial, you'll have to get the dossage information from them."
I was disappointed in this answer. How many offices would we have to keep in touch with to get coordinated treatment? It sounded like we were the ones who would have to do the coordinating - the two offices weren't talking to each other. I wondered briefly if there was some friction between the two hospitals, which had recently undergone a very controversial merger. I also wondered if there was some disapproval on Dr. Hancock's part, since Don had rejected his wife's trial and gone for the Thalidomide instead.
Don came out of the treatment room about then. He also asked Dr. Mehta about the Thalidomide dose. Dr. Mehta gave him the same answer, but with a more neutral attitude this time.
"What do you think of Thalidomide?" Don asked.
"We don't use it here," Mehta said. "We do use it for head and neck cancers, and for liver cancer, but not for brain tumors."
He shook hands and left then. We went out to the intake desk and Don asked for information about bus schedules. He doesn't want me to break up my work day to bring him to the treatments every day. One of the women at the desk said she didn't know what the schedules were, but that perhaps the social worker would know. She paged her and we sat down to wait for her.
After a while, she called out, "Mr. Flint?"
I didn't think Don had heard her, so I said, "Yes?"
"The social worker's with another patient at the moment, but she'll be out soon."
"Okay," I said.
"So, you answer to Mr. Flint, now?" Don said. Apparently, he had heard her after all. "I guess that happens when you're married."
"That, and I get to use 'we' a lot when I really mean 'you.'"
"Okay. At least we aren't wearing matching windbreakers."
"Or matching clothing, though God knows I've tried."
After waiting fifteen minutes, we decided to leave. It was time for me to get to work. I dropped Don off at home, and while there he retrieved his phone messages. There was indeed a message from Dr. Prados's office. They had called barely a minute after we had left that morning. Margaretta gave us the dossage information: 200 mg, to be taken nightly, starting on the first day of radiation and continuing thereafter. She also wanted Don to contact their office once a week so they could "keep track of how he's doing." And she suggested that the dossage may change over the course of the trial.
I returned from technical rehearsal that night around 11:30. I was exhausted. The rehearsal had not gone well, and I was beginning to think the show would be a flop. Don had prepared steamed vegetables for me. He served them up with some reheated rice from the night before.
We cuddled in bed that night. I couldn't help but think that this was the last time before radiation and drugs might start altering his perceptions and possibly his personality. Would they alter mine as well? We were, for a moment that would pass in the night, untainted by the coming trials. I clung to him as if he were the only real thing I had ever known.
Today, finally, really was Don's first radiation treatment. We each carried a little angel medallion that Don's friend Dierdre had sent us. After all the build-up of the past three days, it was over so quickly that it was almost anti-climatic. Don said the technicians talked him through it, telling him each time the machines moved him and the X-ray gun to a new position.
We spoke to the social worker afterwards. She didn't have any information about how to get from Mountain View to the Stanford Medical Center. I found that a little odd. Surely such information is out there: all you'd have to do is make a few phone calls. But the best she could do was tell us to go upstairs where there would be some bus schedules. She also gave us the name of a cancer support group, and the name of a person who coordinates volunteers who drive cancer patients to and from the hospital. "But I don't think they'll be able to have anything in place for you next week," she said.
We went upstairs and eventually found the bus schedules, though we didn't find any that went from Mountain View to Stanford. Don said he was feeling a little odd, and he thought coffee would settle him, so we stopped in the Cafeteria.
When we sat down, I asked him if he could describe the sensation to me.
"It's as if nothing is familiar," he said. Then he reached out and took my hand. "Except you."
He had done very well finding his way through the hospital to the radiation therapy room on our way in, making only one wrong turn (or, rather, failing to make a turn when he should have). But now he was acting confused and distracted. I had hoped he could find his way to and from therapy on his own, but I now think I should be with him for the first week. Maybe we can try a dry run of getting to and from Stanford this weekend and see how it goes.
On the way back home, he tapped the right side of his head. "Okay, guys," he said. "Do you get the message? Differentiate or get out of there."
"Yeah," I said, "no more lazing around, slurping up glucose."
"Remember," he added, "if I go, you go."
I hope they got the message.
That night, he took the first Thalidomide dose. Despite the best efforts of the manufacturer's packaging design, he was actually able to get the pills out of their plastic cocoons. Then he sat on the edge of the bed, staring down at them in his palm. I sat next to him.
"I'm scared," he said.
"You don't have to do this," I said. "At any time, you can stop."
"I don't want to not do it, but..."
"I know," I said and put my arm around him. We stayed that way for a little while. Then he took the pills.
Don awoke with a headache, but I blew it away. We joked that perhaps this should be part of his regular prescriptions.
"Maybe we can even get a cute young doctor to fill it," he joked.
We had slept until 11:00 AM, then I made him a breakfast of blueberry honey whole wheat pancakes with sliced peaches on top. He got out his array of supplements and herbs and popped handfuls of them into his mouth, washing them down with grapefruit juice. Then he started in on the pancakes. Halfway through them, he stopped.
"What's wrong?" I asked.
"Nausea," he said.
He waited for about five minutes, then began eating again, slowly. He didn't finish, but he said that was because he was no longer hungry. The nausea, he said, had passed pretty quickly.
That evening, we drove down to San Jose. I had call at 6:30, but we were about half an hour late. I dropped Don off at the Starbuck's across the street from the Repertory Theatre. I pointed out the tracks of the light rail system he would have to cross, silently cursing the engineers who decided to put them on the same level as the rest of the sidewalk. For the remainder of the time I spent in warm-ups, run-throughs, and just plain sitting in the green room, the picture of him being blind-sided by one of San Jose's light rail trains kept flashing in my mind. When the curtain finally went up, my eyes were not on the conductor, but searching the audience for his face. There he was, of course, right where he should be. In my relief, I nearly missed my first entrance. He told me later that he had to resist the temptation to wave to me. I'd have blown the first note, but I'd have loved it!