June 27, 1999 - July 3, 1999

Sunday, June 27 Don rose early for his yoga class, then returned around 9:00 to suggest that I go get some breakfast while there was still some out, so we did. I said hello to Matt, who was one of the retreatants. This was a small group of doctors whose practices are mostly cancer patients. Although Matt doesn't fit this demographic, Don told me that Rachel thinks he adds something to "the mix." I can appreciate this, as I find his presence engaging and reassuring. During breakfast, Don noticed one of the retreatants sitting at our table was a doctor who had mentioned hiking in a box canyon near Escalante, Utah. Since our camping trip to Utah is coming up in a week, Don decided to ask him about it. There was nothing unusual in this, except that Matt was also talking to the doctor at the time. Don lept right in with his question, completely ignoring that Matt had already engaged the doctor in conversation. Don told me that lately he feels he needs to speak up or ask a question as soon as an idea occurs to him because he forgets things so quickly. But this interruption was egregiously rude. I could see that Don wasn't the least bit aware of his faux pas. I could also see that Matt was holding back his indignation, probably attributing Don's lack of social grace to the effects of his stroke. I would have thought so, too, except I have never seen it so blatent before. After breakfast, the retreatants went into a meditation workshop and Don and I were asked to be very quiet. We decided the best way to do this was to leave, so we went for a brief walk, then returned to Kohler house. I noticed his walk was a little off, displaying a bit more asymmetry than usual. I put this down to his being tired. Since I was tired myself - that bed wasn't really made for two people to sleep in - I suggested we take a nap. Don readily agreed, and we crawled back into bed with our clothes on. We woke in time for lunch at 1:00. This was the last meal this group of retreatants would have together, and they were in high spirits. Rachel joined the lunch, too, and she and I exchanged nods from across the room. After lunch, Don and I headed for Oakland to pick up a change of clothes for Don. While we were there, I wrapped the pole he had knocked his head on with a foam rubber pad I had brought especially for that purpose. While Don was still inside getting stuff for the trip to Mountain View, Kent came up the street. He had been walking the dogs. We exchanged pleasantries, and then he asked how we were doing. "Okay," I said, hedging a bit. "We're looking forward to our camping trip next weekend." Kent looked troubled. "When are you leaving?" he asked. "Friday afternoon," I said. He looked down at the sidewalk and scowled. "I'm going to drive up Friday afternoon, then we'll take off for Lake Tahoe Friday evening." Kent was quiet for a while, but I could tell he was upset. Finally, he said, "I'm glad we talked." "What's the matter?" I asked. "Don said he'd take care of the kitty. Jess is gone and I'm leaving to join her Wednesday morning. He was going to take care of the cat while we were gone." I was flabbergasted. It was not like Don to forget about taking care of animals. "How long ago did you talk?" I asked. "It was just earlier this week," he said. "It's all right. I can kennel the cat. But I'm glad we talked." "Maybe you should talk to him." "I'll talk to him when we get back. There's no need to go into it now." Don came out of his apartment then and he and Kent exchanged greetings. A man came by to pick Kent up to go to a birthday party and Don got into my car. Kent said he had just finished Neil Stephenson's Cryptonomicon and he thought it was a book I would really enjoy. I followed him into the house, where he handed me the book. I took this opportunity to tell him the method I used to make sure Don remembers something. "I tell him about two weeks beforehand, and if he still remembers it a week later, I figure it actually made it into long term memory." Kent nodded his head. I could see that he and Don were going to have a "serious talk" when he got back. On the drive down to Mountain View, I asked Don where Jessica was. "She's at a folk dancing workshop. She and Kent go to these dance camps and things together. They're really into it." "Will Kent be joining her?" "Yes, he's leaving on Wednesday." "When will they be back?" "Sunday afternoon or Monday." I let it drop. If that wasn't enough to jog his memory about his commitment to take care of the cat, then there probably wasn't any memory there to jog. The rest was a matter between Kent and him. He was still complaining of a headache. When he got to my house, he took some Ibuprophin, but it didn't seem to help. I noticed that his balance seemed a little off. When he stooped down to get the Ibuprophin bottle from his luggage, he staggered and nearly fell over. At dinner, he complained of nausea. He took a few bites of Thai left over from Bob's visit and put it aside. He took a few sips of cream of mushroom soup, but found that his stomach felt quesy and put it aside, too. When we went to bed, he was still complaining of a headache. I was beginning to grow worried. His behavior was similar to that of someone suffering from a concussion. It was also alarmingly close to the warning signs for a stroke. As we lay in bed together, he said, "Thank you for wrapping that pad around the pole." "I was afraid you would take offense," I said. "No. What do you mean?" "Well, I was afraid you might think I thought you couldn't be trusted not to knock your head again." "No, it was very thoughtful of you." He was quiet for a while. Then he said, "Was the sun unusually bright today?" "No," I said, puzzled. "It was just a bright, sunny day." He said no more about it and appeared to go to sleep. As I drifted off myself, I recalled that photophobia was another warning sign. I felt a growing unease.
Monday, June 28 After Midnight I woke a little after 2 AM after having had a most remarkable dream. In it, people were streaming into the opening night of a new opera about the lives of Mozart and Beethoven. The dream was very cinematic. The camera would zoom from one group of people to another, picking up snatches of conversation. Soon, I realized I was hearing the same phrases over and over, even though the conversations themselves were quite different from group to group. The phrases that kept being repeated were, "it's honking huge," and "they were real stallions, then," and "it all ends with the tinkling of a bell." This would have been remarkable enough, but then the dream did something no other dream I have ever had has ever done before. It started over, from the beginning, and exactly repeated itself. Again, the phrases repeated, this time "it's honking huge" showing up in everyone's speech. Finally, the camera took me up to the balcony, where I watched a young woman give an opening speech about the opera that we were about to see. "It features Mozart," she said, "who, as you all know, was a honking huge musical talent. The opera is about his meeting with Beethoven, who was honking huge himself." The audience laughed and the speaker smiled. "They were real stallions back then! And it all ends with the tinkling of a bell." Then she held up a little triangle and rang it. The audience erupted in applause. An old man with flowing white hair and beard reached up out of the audience and flung his arms around her neck. "I love you!" he shouted. Then he turned to the audience, his face glowing in the light of the spotlight, tipped his head back and laughed uproariously. He was still laughing as he walked up the aisle and out the theatre, pursued by confused security guards. I woke with a start. This was an amazing dream. I got out of bed and went into the next room to write it down. When I crawled back to bed, I was surprised to see Don was awake. I thought I had been very careful not to disturb him. "Is there anything wrong?" I asked. "Headache," he said. "Did you take some Ibuprophin?" "Yes. Just did." I thought for a moment. This was getting serious. "Maybe we should think about going to the Emergency Room," I said. "Do you think so?" he said. "Let's give the Ibuprophin a little time to work, then see how it is," I said. "Okay," he said, and closed his eyes. He lay there in the dark, his breathing regular, but his face a bit strained. I could not go back to sleep. I lay beside him, watching the clock. How long should it take for Ibuprophin to work? I thought about Patrick, how I hadn't acted in time to save him. After 20 minutes, I asked Don again, "How is your headache? Any better?" "No." I was not going to be too late again. "Put your clothes on," I said, "we're going to the hospital." We were in my car and on our way to Stanford in less than 5 minutes. We sped along Alma on our way to Stanford University Hospital. Literally. I was going 45 miles-per-hour in a 35 zone. There was only one other car on Alma at that hour, coming towards us. As it passed, I noticed it was a police car. I watched it anxiously in the rear view mirror as it went about a quarter of a mile down the road, then slowly turned around and came back towards us. Shit! I said inwardly, and slowed to 35 miles per hour. I even slowed to the posted 25 miles per hour when we entered the business zone near University Avenue. As far as I know, no one ever pays attention to that speed limit. The cop stayed on my tail until I made the loop onto University, sweating bullets the whole time. As we got out of the car at the emergeny room, Don vomited. I walked over and held him. "I'm scared," he said. "It's okay," I said, "I'm with you." We had to pass through a security guard and a metal detector to get to the intake desk. This alarmed and angered me. "You'll have to put the backpack through the machine," the guard said. "Fine," I said, "you do it. This man has got to get inside." I handed the pack to the guard and guided Don through the door. It was 4:00 AM. There was no one on the intake desk. "Hello?" I shouted. "Is anybody on duty?" I was beginning to think my idea of going to Stanford Univeristy Hospital and Shopping Mall was not such a hot idea after all. El Camino Hospital was actually closer to where I lived, but I thought the service would be better here. I heard laughter from the other side of the desk. "Hello?" I shouted. An intake clerk came out to the desk to take our information. A solid wall separated her side of the desk from our side. She started to ask us the standard intake questions, beginning with insurance. That is when we discovered then that Don had lost his insurance card. He started going through the items in his wallet. The intake clerk waited paitently for him to pull a rabbit out of his hat. She seemed in no hurry. When Don started going through the stuff in his wallet for a third time, I thought I ought to speed things up and get some sense of urgency behind this process. I explained Don's risk for brain hemorrhage and stroke. This seemed to do the trick. She asked us to take a seat. A nurse soon came out and took his blood pressure and temperature and then began the standard intake questions all over again. Don was getting several of the answers wrong or just staring into space when she asked them. I asked him, "Would you like me to answer the questions?" "Yes," he said. Turning to the nurse, he said, "This is Lou, my partner and my power of attorney." I answered all her questions succinctly. Then she told us to take a seat and wait for a doctor. We sat in the waiting room for 20 minutes. I stared at a poster on the wall touting Stanford's much-vaunted "Brain Attack" program. I found the irony somewhere between screamingly funny and just plain screaming. Here was a guy who had had an actual stroke just six months ago and was now in their fucking waiting room exhibiting symptoms of at least a concussion if not another stroke for God's sake and all they can do is yuck it up in the back room while God knows what is going on in his head. We finally got admitted beyond the magic doorway into the part of the Emergency room that actually had doctors in in for Christ's sake at 4:20 AM. And then we went through the whole shit-list again, including another taking of his blood pressure and temperature (do people suffering a stroke actually run a fever?). But this doctor did a few more things: measuring the relative strength on Don's left and right sides, shining a light in his pupils, doing the "finger wiggle" test for field cut. Then he said, "Well, since you have had a hemorrhage before, we should take another cat-scan," that is, a CT. He kept saying, "This is the standard thing to do," and I couldn't tell if he was trying to reassure us, convince himself, or simply repeating some mantra necessary to placate the insurance gods. They took Don off for the scan. "You can wait in the waiting room," the doctor said. "It's more comfortable out there." "Where will you bring him back to?" I asked. "Here," he said. "Then I'll stay here. He'll want me to be here when he gets back." While they were gone, I decided to look for Don's insurance card. There had been a shift change out front, and the new intake clerk was asking me for it. I couldn't find it in his wallet. I thought it might be in his "can't lose" pocket in his jacket, so I went out to the car to fetch it. I also moved the car so Don wouldn't have to walk through his vomit on the way back to the car. I brought his jacket and Kent's copy of Cryptonomicon with me back to the Emergency room. This time, the guard didn't stop me. Don soon returned from the CT-scan. We held hands and reassured each other. The doctor soon came by. "The scan doesn't show any new bleeding," he said. "There is a mid-line shift, but we would expect that after a hemorrhage." "What's a mid-line shift?" I asked. "The structures of the brain are shifted a little off center, to the left," he said. "But that's normal after a stroke." Another doctor - a handsome man with blue eyes and reddish-blond beard - came in and repeated most of what the other doctor had said. The first doctor was apparently just a resident intern. This was a real doctor. He repeated the pupil test, the finger-squeezing test, flex-the-ankles, and finger-wiggle. Then he repeated what the intern had said: there was no new hemorrhage. He gave us some Vicodan and sent us on our way. But he advised us to schedule a follow-up appointment with Don's regular physician as soon as possible. It was nearly 6:00 AM when we left. The sun was up and the day shift nurses and assistants were arriving. Don expressed immense relief that it wasn't the worse he had feared. "I was worried that it was a concussion," I said. When we got home, I left messages at work saying I wouldn't be in today, and at Dr. Angelone's, cancelling Don's appointment. I meant to leave a message for Dr. Forrester, asking her to move Don's appointment up from Wednesday, but her answering service said they would take emergencies only. Since it seemed to me that changing an appointment was not an emergency, I decided to call them back later. Then I crawled back into bed with Don and was out like a light for most of the morning. During the Day We roused briefly for lunch, but Don couldn't keep anything down. He went back to sleep and I did household chores. I took a call from Dr. Angelone. He said he thought Don's symptoms did sound like a mild concussion, and reinforced that he should see his regular doctor as soon as possible. He was disappointed that their appointment had to be cancelled. Don had been making excellent progress and Dr. Angelone had wanted to do an EEG on him this morning. But he said it could be rescheduled for some other time. Forrester's office still had not called by three o'clock in the afternoon. I tried again and got the answering service again. "I need to talk to his doctor," I said. "I'm sorry," the service said. "We can't take messages. All the doctor's lines are busy. You'll have to call back later." "This is later," I said. "I need to speak with his doctor." "There's nothing I can do," the service said. "I'm just the service." "Well, you've made that perfectly clear," I said and hung up on them. I tried again in half an hour. It was now 3:30 PM, so I had little hope that we would get to see Dr. Forrester today. But this time, I did get an actual person in her actual office, not the god-damned answering service. "I'm afraid it's too late for an appointment today. Dr. Forrester leaves at four o'clock." "How about tomorrow?" I asked. "She only works half a day tomorrow," the voice on the other end said. "Don has been to the emergency room and I think she should see him as soon as possible." "I'll see if I can squeeze you in." There was a pause. I was calling from the bedroom. Don woke up long enough to ask what was going on. "I'm trying to get you an appointment for tomorrow," I said. "Good," he said, and went back to sleep. The appointment lady came back on the line. "We have an appointment for you tomorrow at 12:30. Is that okay?" "That's fine," I said. Later, when I passed this information on to Don, he said, "So, what train do you think I should take in the morning?" I thought about how confused he seemed and how much he was sleeping. "Don't worry about it," I said. "I'm just thinking about my bags and my valise and stuff and wondering how I'm going to manage the transfer from the train to the bus..." "Don't worry about it," I repeated. "I'm taking you." That seemed to relax him and he went back to sleep. All told, Don had been awake about six hours in the last 24 - and that included the two hours in the Stanford Emergency Room. He hadn't been able to keep anything down. We tried everything, even simple vegetable boulion. He'd throw it up just minutes after swallowing. He said the Vicodan helped a little, but not much. Tomorrow, he was going to try some feverfew and Ibuprophin in combination.
Tuesday, June 29 We got up earlier than usual. I had not slept well, but Don was out like a light most of the night. I got up and had a bowl of cereal while Don had a banana. He said he didn't want to risk anything heavier. He also took an Ibuprophin and a feverfew capsule. He said he thought it was helping. We were on our way by 9:30 AM. I was eager to get him to his doctor and wanted to take no chances that we'd be late and would miss her. Don reclined the seat so he was almost lying flat. "It's a perfect California day," I said. Don roused himself and looked out the window. "The sky is blue and cloudless, the hills are golden, and the oaks are deep and green." "It's beautiful," he said, then lay down again and dosed off. I woke him up when we got to Mill Valley so he could navigate me through the tricky interchange that leads to his doctor's office. He seemed fragile and easily confused as we entered the building. I was leading him around like a balloon on a string. The receptionist was startled by our arrival. We were an hour early. "That's okay," I said, "we'll wait." I was actually hoping that someone would cancel and we'd get in to see her early. But there was a steady stream of patients for the next hour, a new one almost every 15 minutes. Finally, we were shown to an examination room. While we waited for Dr. Forrester, I made fun of the Judy Chicago print on the wall. I told Don I would shield him from it, lest it disturb his delicate psyche. He seemed amused. Then Dr. Forrester came in. She seemed tense, almost frightened. Don introduced me, saying, "This is my partner, Lou." We shook hands. Turning to Don, Dr. Forrester said, "I've been trying to get ahold of you. I really need to have a number where I can reach you reliably." "He's been staying at my place," I told her. "Stanford Hospital has also been trying to reach you," she said. "They have my number," I said, puzzled. They took it in the Emergency room as the person to contact in case of an emergency. "Then Stanford hasn't talked to you?" "No," Don said. Dr. Forrester took a breath. "Stanford wants me to admit you to a hospital immediately. They think you may have a tumor." Don and I looked at each other. "They didn't say anything about this yesterday," I said. "When the regular radiologist came on duty, he took another look at your CT-scan. He thinks he sees a mass there, and wants you to have an MRI as soon as possible." "When?" said Don. "I have you scheduled at Magnetic Imaging for 3:30 this afternoon," she said. "How are you feeling?" Don told her about the headaches. I told her about the problems with balance and memory. "Memory?" Don asked me. "Remember the cat?" I asked him. He shook his head. "You agreed to take care of the cat this weekend while Jessica and Kent are away." "I...," he sputtered, then just shrugged his shoulders. I turned to Dr. Forrester. "He and Kent talked about it last week. And he's forgotten a few other things." Don looked distressed. "Don't worry," I told him, "the cat will be taken care of. Kent will see to it." "So, do you want the MRI?" Dr. Forrester said. "Yes," Don said. Dr. Forrester opened the door and called out to her receptionist to start the paperwork. When she turned back to us, I said, "I thought he had an MRI done at Santa Rosa." Dr. Forrester looked puzzled. "It's not in his file," she said. She started leafing rapidly through the file. "No," she said, "there's no record of it here." "Gosh," I said, turning toward Don, "I could have sworn someone told me you were going for an MRI at Santa Rosa." Don shrugged and made a wry smile. "Well, don't ask me," he said. Dr. Forrester said, "We can do the MRI as an in-patient or an out-patient procedure. If you want, I can admit you to a hospital right now. How do you feel?" I mentioned that he'd been vomiting, and that all he'd had to eat in the last 24 hours was a banana. The nurse poked her head in to ask for a clarification the insurance company needed before okaying the procedure. While they parlayed, I asked Don if he was okay. He shrugged. "At least now we know," he said. I gave him a hug. Dr. Forrester and the nurse finished negotiating what they needed to say to the insurance company and the nurse left. "So," the doctor said, "how are you feeling? Are you still nauseated?" "No," Don said. "I took some feverfew and Ibuprophin. That seems to have helped the headache some." "Do you think you could eat? Because if you're not eating, I'll admit you to the hospital," she said. "Do you think you can eat?" Don shrugged his shoulders. "Sure," he said. The nurse came back in. The insurance wanted another clarification. Another parley ensued. "Are you sure you can eat?" I asked Don. "Yeah," he said. "I'm actually kinda hungry." "I'm not surprised." The nurse left and the doctor returned her attention to us. "So, do you want to be admitted to a hospital or should we do the MRI as an out-paitent procedure?" "I think out-patient is fine," Don said. "And I want you to know," he took my hand, "I'm giving Lou my medical power of attorney." I gave the doctor my address and phone number. Then she said, "The MRI is scheduled for 3:30. If something does show up, we'll know right away, and you'll probably be admitted to a hospital then. Which hospital do you prefer?" Don shrugged his shoulders. "Whatever. UCSF, I guess." "He has a neurologist, Dan Lowenstien, at UCSF," I said. "I'll look into it," she said. "In the meantime, try to eat something." We ate lunch at the Half Day Cafe. It was a pleasant day, around two in the afternoon, so we sat outside. I was revenous and ordered some kind of sandwich. They have smoothies at the Half Day, and when I pointed this out, Don decided to have one. He drank it all. He got up to make a phone call (I forget to whom), and when he got back, the waitress asked us if we'd like a dessert. To my surprise, Don said, "Yes." Apparently, just knowing something was being done had given him back his appetite. So we ordered one serving of strawberry shortcake and split it between us. We lingered there, saying little. Finally, I took one more glance at the clock. "Time to go," I said. I was feeling very sad and trying very hard not to show it. Don had never had an MRI before but I had. I knew the contraption could be a little intimidating, so I volunteered to hold his hand while he was in the "torus." We both filled out the forms ("do you have any metal filings in your eyes?"), then they ushered us into the dark ante-room, where he disrobed and got into a hospital gown. I left my wallet, belt, and keys behind. Then we entered the brightly lit room with the enormous magnet. Don took the procedure very calmly. They took about two three minute series, and then a much longer one, and finally another short one. They must have been on the phone with Dr. Forrester while the scans were being done because Don was scarcely out of the machine when they said she was on the phone and wanted to talk to us. Don took the call in the darkened ante-room. While he was on the phone, I looked at one of the images that happened to be up on a computer monitor. What I saw didn't look good. A large part of one hemisphere showed some kind of mass, but what it brain mass or something else? All I knew about how to read these images was what I had read on the web. Still, it did not look good. It was not good. Don got off the phone and handed it to me. I could see he was crestfallen. "This is Lou," I said. "He has a massive tumor," Dr. Forrester said. "We have to get him to a hospital right away. I can get him into UCSF, but Stanford would be closer to you." "That doesn't matter. Let's get him to the one we can get to quickest." "Good. I wasn't sure what traffic would be like at this hour." (It was nearly 4:30 PM. I had completely lost track of the time.) "I'll call back as soon as I have confirmation from UCSF." She hung up and I hung up. Then I reached over and wrapped Don up in my arms. We stayed that way for a while. When Forrester called back, she said she was sending over the CT-scan that was done in Santa Rosa and the angiogram that was done last month at Marin General. We were to take these and the MRI films that had just been done and go immediately to UCSF Medical Center, 8-Long. We were to enter through Emergency but not stop to register. "Go immediately to the eighth floor neurosurgery wing and check into 8-Long," she said. "It is important that we begin treatment immediately to reduce the swelling." The MRI films were ready almost immediately, and the other films arrived shortly thereafter. By five o'clock, we were on the road, heading for San Francisco in the middle of rush hour. We arrived at UCSF by a little after six, and by 6:15, were presenting ourselves at the nurses station on the eighth floor of Long Hospital. They weren't ready for us. "Mr. Fint?" the intake nurse said. "We weren't expecting you until 7:30." "We made good time," I said. On the way down, I thought they were going to do surgery that very night. I asked Don if he wanted any visitors once he was admitted. "Not tonight," he said. I was growing more and more frightened. Although he had been more animated during lunch, Don was now increasingly lethargic. When we got out of the car at the emergency entrance, I had to lead or guide him everywhere. He showed no sign of being able to see anything on his left, and he seemed to have no will. He was growing tired, and even though he had just spent nearly an hour sitting in my car, he wanted to sit down. They found a room for us very soon. Within half an hour, they started him on Decadron (dexamethasone) and Mannitol. The first is a steroid that works to reduce swelling. The second is a diuretic that, as Dr. Forrester had explained to over the phone before we left Magnetic Imaging, "would make him pee like crazy." "We've got to get the swelling down," Dr. Forrester had said. "The steroid will do that, but we've also got to get his body to shed fluid." It worked. In two hours, Don was alert and cheerful. The headaches stopped, and the relief from the pain elevated his spirits further. A Dr. Chau came in and took a brief look at the MRIs I had brought with us. He held one of them up to the light in such a way that I could see the image. It looked to me like the entire right side of Don's head was one large, glowing blob. A honking huge tumor. Sometime around 7:00 PM, I went out to eat. Dr. Berger, who would perform the surgery, came to see Don while I was gone. He explained that thay would use the steroid and diuretic for the next day or so to get the swelling in his head down as much as possible. Surgery would probably be on Friday. "I know it's for the best," I said, "but I want them to take that damned thing out right now!" "Yeah!" Don agreed. But he was feeling so much better now that the headaches had stopped that he thought he could wait. He said he was actually looking forward to the surgery. "At least now we know what probably caused the hemorrhage," he said. "You were suspiscious all along, weren't you?" "Well, I never believed that it would just stop all by itself." I told him that at least one other person besides myself thought that he had had an MRI at Santa Rosa, but that there was no record of it. "Well," he said with a lop-sided smile, "don't ask me." Don and I took turns on the phone, notifying people what was going on. I called Glyphic and told Mark that I would be out for the rest of the week. Don called Commonweal folks. We sketched out a phone tree to handle updates. All in all, we were pretty well coordinated and level-headed, something neither of us thought either one of us would be by ourselves. There was no question that night of my leaving Don in the hospital by himself. I wanted no repeat of the first night in Kentfield. Don would have allowed me to leave, anyway. I climbed into bed with him around 10:00 PM. It was a small hospital bed, but it felt cozy to us. We were both exhausted.
Wednesday, June 30 A nurse, whom I quickly dubbed "Sister," woke us in the morning. "Those beds aren't really made for two people," she said. She did not seem to approve of us. She did her best to ignore me whenever I was in the room while she was there, even to the point of pretending not to hear me when I spoke. She twice approached Don from his left side, standing there with a blood pressure cuff or a needle, while Don was blithely ignorant of her presence. She did this despite my telling her - once to her face and once loudly to the room in general - that Don has a left field cut and will probably not see people who approach him from the left side. Don and I formalized the phone tree to help spread information about what was going on. Rachel agreed to fire up the "V News" mailing list, and I agreed to give her updates every day at 5:00 PM. I added a branch to the tree to take care of notifying my friends and coworkers. Later that day, I drove to Mountain View to pick up enough overnight clothes to last me through the weekend. I also took the larger parts of Don's stuff - his valise and some bags full of stuff - with me. But I retained his backpack. Somehow, I didn't think he would feel secure without his backpack within reach. It had been a kind of anchor for him in Kentfield. Don had asked for a medical power of attorney form as soon as he had gotten a bed assignment the night before, but the social worker had left for the day. Now she came by with the form and explained how it should be witnessed. Sara, who had dropped by for a visit, was one of the witnesses. A woman whom we had never met was the other. Don named Dr. Remen as the first back-up agent, and decided he didn't want a second back-up. I breathed a sigh of relief when it was finally signed and duplicated. I didn't want "Sister" pulling rank on us later that night. I needn't have worried. A different nurse had duty that night. She brought in a chair that made into an almost-comfortable flat surface, but Don would have none of it. I climbed into bed with him for a second night.
Thursday, July 1 In the morning, they took Don in for "Stealth" MRIs, which are done with tiny donuts - like lifesavers - glued to strategic locations on the skull. This is a technique apparently developed here are UCSF. During tomorrow's surgery, the surgeon can point a psecial stylus to one of these "lifesavers" and immediately call up the MRI taken from that angle. The nurse who shaved the circular patches on Don's head and glued on the donuts was friendly and effecient. He quickly figured out we were a gay couple and let us know he was "part of the family." It was comforting to me to be in an environment where gay couples were accepted as a matter of course. Dr. Remen came to see Don later in the day. Other visitors were also present, and as she entered, she remarked that the scene was like "The Adoration of the Child." I told her how I always regarded her visit with Suki and X on Christmas Eve as "The Adoration of the Magi," especially as she was carrying a potted plant as if it were a cask of gold. "Yes," she said, "and all three of us were in capes." She also remarked on the lifesavers glued to Don's head. She said they needed accessorizing, and recommended diamonds and rubies. I said that was much better than my suggestion, which was to glue strips of foam rubber to them and dispense with Don's bike helmet. Don took all this ver good-naturedly. Later that afternoon, the anaesthesiologist came in a described the procedure that Don would go through tomorrow from the anaesthestic point of view. He would be given "the cadillac of drugs," which would knock him out. He would remember nothing of the operation. They would open his skull and perform a "motor map" in order to see where is left-side functions were. Then Dr. Berger would excise the tumor as much as possible. They would perform a second motor map to compare with the first. Though it was not explicitly stated, Don and I took this to be a way of determining whether the surgery, which would be very close to his motor cortex, had damaged his left-side motor functions at all. Then Don would be revived in the operating room. "My goal," the resident said, "is to wake you up in time to thank the surgeon." Don was impressed with the resident's confidence and matter-of-fact attitude. Later that evening, we were visited by Dr. Zakhary, Dr. Berger's intern. This was not the same intern who had spoken to us the previous day. (We later learned that interns turn over on July 1. This caused considerable confusion later as messages Dr. Forrester had conveyed to Dr. Berger's previous intern were apparently not passed on to Dr. Zachary.) Don was very direct in his questioning of Dr. Zachary. He wanted to know what the worst case scenario might be. "The worst case would be that the surgery could not remove all of the tumor, and it could not be treated, and it would grow back," she said. "What are my options then?" Don asked. Dr. Zachary was careful not to answer in terms of what options would be available to Don in particular. That, she said, would have to wait for a complete analysis of his case after surgery and a pathology report. Nevertheless, Don pressed her for a general case. Reluctantly, she admitted that in the worst of cases - and it was premature to consider Don's in this light - in the worst of cases, repeated surgeries were performed, each of which might very well lead to a declining quality of life. "At that point," she concluded, "most patients consider whether additional surgeries offer enough of an advantage to justify continuing that course of treatment." Don nodded. Dr. Zakhary emphasized again that such considerations were premature and that she was only providing the information because he insisted on knowing. Don said he understood. Don was quiet after she left. After a little while, he asked, "What do you think she meant by 'patients need to consider the course of treatment'?" I said, "I think she meant that, for some, the quality of life becomes so impaired that they decide to die rather than continue." "Yes," he said. "That's what I thought she meant, too." It was well past dinner. Dr. Forrester called. She wanted to see how Don was doing. The two of them chatted and Don even joked with her. Then he handed me the phone, saying she wanted to speak to me. "His spirits are tremondous," she said. "Yes," I agreed. "He sounds like his old self again. It's remarkable." "It's steroids," she said. Then she said she wanted to be sure I could get ahold of her tomorrow so she gave me both her cell phone number and her home phone number. She also said she was about to go on a two-week vacation and gave me the name of the physician who was covering for her. But she wanted to reassure me that, no matter what, I could reach her tomorrow. I told her I was very grateful for her help and the speed with which she got us into UCSF. "What about you?" she asked. "Do you think you'll need someone to spell you during the night?" "No," I said. "I think we'll be fine." "I thought so. The two of you seem to be a pretty self-contained unit." Then we said good-bye. The night nurse on duty this evening was much more accomodating than "Sister." She brought in a collapsable chair that could be made into a most uncomfortable sleeping surface. She also brought in extra pillows, bedding, and sheets, and showed me where I could get more if I needed them. I was suddenly overwhelmed by this woman's kindness. 'They're being nice to us because they think Don's going to die,' I thought. Having just told Forrester I thought I could go it alone, I now felt swept by a wave of panic and fear and found myself on the verge of tears. To hide my feelings, I started making up the reclining chair, but Don would have none of it. "You're not going to sleep down there, are you?" he asked. "No," I said. I abandoned the bedding and climbed in with him.	Lifesavers
Friday, July 2 Machines, machines. There were blood draws, a chest X-ray, and an EKG. Mimi came to visit. She seemed on the verge of tears the whole time. A nurse named Abbey also visited. She spoke is hushed whispers so faint I couldn't hear most of what she said. If yesterday was "Adoration of the Child," today was "Day of the Dead," or perhaps "Job's Comforters." At 12:15 PM, they came to take Don to pre-op. This was two hours earlier than we had expected, so I quickly notified the top "branches" of the phone tree. However, once we were in pre-op, we simply waited for two hours. Having eaten nothing since 11:00 PM the previous night, Don was getting very hungry. Dr. Berger came by around 1:15. Don asks him if he will be on Dilantin after surgery. Berger says yes. Don asks if there is any substitute, since his cognitive functioning seemed to be so adversely affected by it last time. Berger says there is no comparable alternative to Dilantin. (His nurse, Marylou, had said that a pharmicist would come by to discuss this with us, but no one did.) Berger once again goes over the procedure he will follow. Don says he is actually looking forward to it. Berger leaves. Around 2:00 PM, I am beginning to feel my tummy rumble. The charge nurse takes pity on me and leads me to the nurse's station, where she gives me some apple juice. The anaesthesiologist team arrives around 2:15, soon followed by the surgery team (sans Beger). The anaesthetist remembers that Don wanted to talk to Berger before surgery and confirms with Don that Berger has been by and they have talked. They wheel Don away into surgery around 2:30. I tell him that I love him; he tells me he loves me, and that he feels fine. One of the doctors tells me to go get something to eat and then wait in the first floor surgical waiting room. He says he will be contacting me about every hour to tell me what's going on. Instead of the waiting room, I return to Don's room on 8 Long. The nurses there say they need to reassign the room, so I have to take everything out. I pack everything I can think of and take it down to the car, which is now thankfully in the nearby garage, not parked way over at Keezar. Then I have a late lunch at Panda Express in Milberry Student Union. The decent but overly-greasy fast food provided by Panda Express comes with a complimentary Chinese Fortune Cookie. My co-worker, Brad, always eats fortune cookies, but never reads the fortune. I always found this peculiar. I crack open the cookie, and while eating the first half, read the fortune inside: "YOU WILL FIND SOLICE IN A NEW COMPANION" I carefully roll the fortune back up and stuff it back into the remainder of the cookie. I no longer have any appetite for it. I find my way back to the first floor surgical waiting room. Around 4:30, I'm told by phone that Don is in the surgery and they are beginning the prep work. I assume this means that he is fully anaesthetized and they are doing things like shaving his scalp and reviewing the MRIs. Perhaps they have even begun the motor mapping. The next series of events are a bit bizarre. 5:15 PM - Dr. Rennecker calls. He wants special tissue samples taken of the tumor. These will be cultured to determine precise targeting for chemotherapy. This is the first I have heard of this. It is not even determined yet whether Don will have chemotherapy. Rennecker says he has called Dr. Berger in the operating room to make sure the request is honored. I feel my face grow hot. He says that Dr. Forrester has been trying to get Dr. Berger to confirm that he will indeed take the special tissue samples, but that Berger has not returned her calls. 5:20 PM - While I am still on the phone with Dr. Rennecker, Dr. Berger calls me on another phone. I put Rennecker on hold while I speak to Dr. Berger. He is pissed off about being called while in surgery. Berger says he's never heard of Forrester. This strikes me as more than strange. I tell Berger that Forrester is Don's primary care physician, and that she had spoken to both Don and I the night before and mentioned nothing to either of us about this special request for tissue samples. He asks me how he should handle this request from Rennecker. I tell him that I will talk to Forrester. I also tell him that I have Don's power of attorney and will have final say on the issue, since Don is unconscious. I mention that Forrester did not discuss the issue with us last night, which is when I think she would have brought it up if she thought it had merit and was important, but that I would check with her to make sure. I tell him, "Until you hear otherwise from me, proceed as you have described the surgery to Don and me. I apologize that you were called in surgery. I will do my best to make sure that doesn't happen again." This seems to mollify him, and we hang up. 5:25 PM - I get back on the phone with Dr. Rennecker, who has been holding. I tell him that all communication with Dr. Berger has to be through me, and that I am taking medical advice only through Dr. Forrester, who is Don's primary care physician. If he can convince her of the merits of the procedure he wants, then she should call me, and I will pass the request on to Dr. Berger. 5:30 PM - I call Dr. Forrester's cell phone number. The answering service says it is out of range. I call her home phone number and get an answering machine. I give a summary of what just happened and ask her to get in touch with me in the waiting room if she has a medical opinion to give me. 5:40 PM - I call Dr. Remen on the presumption that she and Dr. Rennecker are probably in touch. I ask her to ask him to please stop trying this last-ditch attempt to alter the course of the surgery. She says that Forrester had called her and discussed the procedure two days ago. I am flabbergasted. Why did Forrerster discuss it with Remen and not with Don or me? Why didn't Remen mention it when she came to visit yesterday? While these questions are running through my head, Remen is adding some details about the procedure Rennecker is asking for. It will require special storage to keep the tissues alive. It will require a courier service to get the samples to some lab in the Los Angeles area. It will not be covered by Don's insurance. On the whole, Dr. Remen thinks the process is probably not worth the trouble it will cause. In the absence of a medical opinion, I agree. I ask Rachel to do her metaphysical best to help me vent some steam. This would have been a fine idea if we had discussed it yesterday. Now is certainly not the time. She agrees. I also tell her that I had offered my strength and courage to Don if ever he needed it, and that I asked him to give me his patience. I knew I might have difficulty dealing with Don's friends all trying to save his life, but I never counted on dueling doctors. 5:45 PM - I make one more attempt to reach Dr. Forrester and, again, get only her home answering machine. I leave a message, but forget to mention that the waiting room where I can be reached closes at 6:00 PM. There is no phone in the "after hours" waiting room on the fourth floor. 6:00 PM - Dr. Rennecker calls to say that he had talked to Forrester at twenty minutes to five this evening, and that she had said then that she would try to call Berger. Although I don't say so to Rennecker, this was already way too late: Don was already under anaesthesia by then, and as far as I knew, they had already opened his skull. Rennecker tried to explain how he ended up talking to Dr. Berger. Not confident that Forrester would follow through, he had called the UCSF pathology depertment himself to determine if they were set up to receive the tissue samples. When they said they weren't, he said that they suggested he call Berger in the O.R. I frankly did not believe him. I could not imagine that one branch of the hospital would suggest that an outside physician, who is not a surgeon and has no formal standing in the case, call a surgeon in the operating room to discuss a new procedure in the middle of an operation. (I now know better. There is no institution so bound up in protocols, forms, and procedures, no institution so bound by tradition and hierarchy, no institution so dedicated to the sorting, filing, relaying, and timely delivery of vital data, and no instutition so capable of getting all of the above completely fucked up as a hospital.) However, Rennecker was now talking to me to say, having just talked to Rachel, he has decided to let the matter drop. I am relieved. He doesn't seem particularly apologetic about what he had just put me through, but frankly I am beyond caring. My thoughts are elsewhere. Just after Rennecker hangs up, the waiting room attendant announces that the waiting room is closed. The only people left in the room are an elderly black woman who is dressed as if for church and me. We are escorted up to the fourth floor waiting room, where there is no phone. Forrester has not called back. Almost as soon as we arrive in the new waiting room, someone comes out in surgical greens to tell me that Dr. Berger will be out to talk to me. Nothing happens for half an hour. Around 6:30, the kind nurse from the pre-op area sees me staring whistfully at the doors to the surgery recovery area. She says, "Come with me, we will make sure they know you are here." But when we go through the big "No Unauthorized Personnel" doors, there is quite a scene going on. A woman has collapsed in front of the nurses' station and several physicians are standing over her. "Perhaps now is is not a good time," I say. The nurse agrees and we leave. At 7:00 PM, I go back to the O.R. recovery unit window and announce who I am and mention that I was told Dr. Berger wanted to speak with me. A nurse says she will happily page him, but I assure her I don't want him bothered if he is busy doing something else. I just wanted to confirm that he knew where to find me when he needed to. The chief anaesthesiologist passes me in the hall. He says he's calling it a day. He says everything is going fine. At 7:30, Dr. Berger meets me in the waiting room just as I am trying to figure out how to make the phone there work. I had discovered the receiver in a drawer that was, shall we say, insufficiently locked. I was actually a bit chagrined at being caught in the act, but Berger wasn't paying any attention to what I was doing. He made a "D" with the thumb and forefinger of one hand and the index finger of the other. "It was about this big," he said. Then he held his fingers about an inch and a half apart, "And about this thick." "Much bigger than a golf ball, then," I say, remembering Dr. Zackery's analogy from the night before. "Yes," Berger said. "I was surprised he was as functional as he was when I talked to him the other day." He said his expectation was that Don would be home by Wednesday or Thursday. I asked him what the diagnosis was. "We won't know what kind of tumor it is until about Thursday of next week," he said. "We'll decide on a therapy then. Probably radiation, but probably not chemo." I am relieved to hear that. Dr. Rennecker's special tissue samples would not be needed after all. "What it most probably is not is a cancer that has metasticized from somewhere else. Nor is it likely to be a lymphoma, though tests will determine that for sure. What we don't know is whether any of the tumor remains intermingled with the motor cortex neurons. We'll have to see how he recovers." Dr. Zakhary stops by the waiting room at 9:45 on her way home to say that Don is just beginning to regain consciousness. He is the operating room recovery. The surgery went well with no problems. She says Dr. Berger believes they got 95% of the tumor. Ten minutes later, the Neurological Intensive Care Unit nurse in charge of Don says, "He's on his way." They're going to complete the recovery in the ICU, not the OR. She says she'll come and get me as soon as he's "situated." Minutes later, I see them wheel him into the NICU. I smile at him, but he doesn't have his eyes open. He looks a lot better than he did at Santa Rosa. Diana calls from Hawaii around 10:15. She has apparently been routed to the NICU by the hospital switchboard, and someone comes out to get me to talk to her. While I'm filling her in, the nurse signals that I can now go in and see Don. I hurriedly said good-bye to Diana and went in. He's talking, joking, moving his left arm and leg. I'm just elated. He tells the nurse he'd like a double latte in his IV drip. Susan, his nurse, finds this very amusing. I use the phone tree to spread the news that he is out of the OR, recovering, and doing well. While on the phone with Dierdre and Al, they offer to put me up for the night. I tell them I will probably take them up on it. Around 11:00 PM, Dr. Forrester calls. She apologizes that her cell phone has been turned off. She didn't know it was. She also apologizes that the tissue decision was "dumped in my lap." I said, "I felt that if you though we ought to consider it, you would have mentioned it last night." She says she felt it was beyond her expertise to judge the usefulness of what Renncker proposed. I said, "It may be a useful technique, but the time to decide that was yesterday, not today when Don's already unconscious and in surgery." She apologizes again. I accept her apology. I also made it clear that I thought Rennecker had committed a serious breech of protocol by calling Berger while he was in surgery. Julio has taken over for Susan while she's on lunch break. He is tall and handsome. I hand the phone over to him to get information from Forrester about the incident. I assume it is entirely an internal matter between the hospital and Forrester now. Clearly, there was some breakdown between Forrester, the resident interns, and Dr. Berger. The fact that Dr. Berger didn't even know who Forrester was does not speak well for the hospital's internal lines of communication. I think it is Julio who points out that July 1st is the day the interns switch over their six-month residencies. Any information given to Dr. Berger's intern on June 30 was apparently lost when the new intern arrived on July 1. I spend the night at Dierdre and Al's. At first I don't remember all, then he reminds me that he was with Annie when she made her visit to Kentfield, the one where she wanted to "be alone" with Don. We nod in agreement, remembering the strangeness of that day.
Saturday, July 3 I arrive back at the hospital about 10:00 AM, singing a rousing, cheerful melody about freedom. When I arrive at the ICU, the nurse on duty asks how I am related to the patient. Clearly, she intends to do some visitor screening. I say, "I'm his partner and I have his medical power of attorney." She says Don hasn't had any other visitors (implying she wouldn't have let them in if he had), but then she lets me in. Once again, the power of attorney has performed its legalistic magic. She tells me he has eaten breakfast and they expect to transfer him to a room in the "step-down" unit later today. Ahead of schedule again! They also say they're going to do a follow-up MRI later today, probably after he's been transferred to the step-down unit. Katherine visits just as lunch arrives. She has brought Darjeeling tea, cherries, two cookies, and a card that depicts Durga vivisecting a demon. Just like at Santa Rosa, she is not content to simply present these things, but wants to see Don actually using them. So she washes the cherries and puts a handful of them on his lunch tray. She moves to add them to his cottage cheese but checks herself. "I guess I don't really need to do that," she says. Looks like we're all learning where our weak spots are. She says she called last night, too, around 10 PM. It was before Diana, I think, but I'm not sure. She says she wasn't getting any information, indicating a breakdown in the phone tree. She says she told a co-worker, an ex-nun, that she was finding it difficult to do her work because she was worrying so about Don. The sister told her, "Make your work a prayer for Don." She found this very comforting. Bo called and was tremendously cheered to hear Don, as Don was to hear him. Diana called from Hawaii again after lunch. Around 2:00 PM, they decide to give Don a "saturation" dose of Dilantin to bring his blood levels up quickly. He has been on 300 mg. a day since the surgery. He spoke to a pharmicist earlier today, before I arrived (so Marylou did come through, after all). Originally, they thought they ought to give him 1 gram, but since he was already getting 300 mg. doses, they decided to do only 800 mg. The nurse administers the dose intravenously, admitting that it is "caustic." Don complains that it does, indeed, burn in his veins. He falls asleep soon after. He wakes up again around 3:00 PM and tells me, "No more intravenous Dilantin." "It hurts?" I ask. "Yeah. They were afraid the gel on the capsules wasn't vegetarian. And might be painful to swallow. But it's okay." "I'll tell them. No more intravenous Dilantin." "Thank you." "They're moving you to a 'step down' unit between four and five today. And the Dilantin infusion is over. No more Drano through the veins." "Yea," he cheers weakly. The effect of the Dilantin is dramatic. They move Don to room 819 around 5:00 PM. The room is full of streaming afternoon sunlight, very cheery. Mimi arrives for a visit, then Parusha, but Don is uncommunicative. He curls into a fetal position and sleeps until Mimi and Parusha leave. The room has three beds, and one of them is soon occupied by another man. His wife soon figures out the TV controls and from 6:00 PM on the television is on constantly. The volume seems to increase with time, too. Around 5:20, he calls Rachel. He tells her he got out of surgery and was in the recovery room at 9:00 PM. He tells her, "I was just in time for the prayer wave. I had such a tremendous sense of well-being." This is the third time he has told this story. When Katherine was visiting, he told her the sight of me at his bedside in the ICU (not the recovery room) combined with the nine o'clock prayer cycle gave him "a great sense of well-being that lasted for the next six hours." The first version he told me earlier in the day, before Katherine's visit. He told me that it was seeing me in the intensive care unit that lifted his spirits. He did not mention the prayer cycle to me. Don does this. He fashions from his experiences a version of events that both captures his feelings and pleases his auditors. I think he believes each and every version, and that each version is as valid a report of his experience as the others. The discrepencies are not contradictions, but refractions of the same experience seen through the moving lense of a human mind. I tell myself this to perform a kind of intellectual distancing. It helps me avoid taking the editing in and editing out of my role in his euphoria personally. After all, it is his euphoria. It is a habit of mine to hang my happiness on someone else's internal state, just like it is a habit of mine to imagine dramatic confrontations and horrible disasters. They are distracting habits. I try my best to ignore them. In this case, it is a particularly difficult. I sigh and try to forgive myself my weaknesses. At the 9:00 PM vitals, I ask the nurse to check on the MRI which Don was scheduled to have today. It still hasn't happened. Don complains of a slight headache. When I ask him about it, he says it's just due to the pressure in his ear. He wishes it would drain. He is surly, sleepy, and depressed. Around 9:30, I sneak downstairs to the MRI room, navigating the bowels of both hospitals with managing to arouse suspicion or risk arrest. When I get to the MRI clinic, it is closed. The door is unlocked, but the lights are out and nobody's there. I return to report this news to Don. I tell him I'm going to take this opportunity to return to Mountain View and get some fresh clothes and sleep in my own bed. He says he thinks this is a good idea. On my way out, I tell the nurse that the TV is still on, though the man in the other bed appears to have fallen asleep and his wife has long since gone home. The nurse assures me that she will turn the volume down and that at any rate the TV will be turned off at 11:00 PM.