October 10, 1999 - October 16, 1999

Sunday, October 10


Monday, October 11
Don found out today that The Fund for V was tapped out. There isn't enough money in it to cover the lastest batch of receipts he's sent them. They're going to send him a check for the balance, and yet somehow manage to keep the account open. I guess that means there isn't any money to pay the woman who's been writing the checks, either. Don was always irked that part of the money was going to her, anyway.

Tuesday, October 12
I was still at work at 6:00 PM, planning on slogging on until 7:00 PM, when I would leave for chorus rehearsal. Don had been apprehensive this morning, sorry that he wouldn't see me until I got home after 11:00 PM that evening. He had had an appointment with Dr. Freinkel today, but it was in the middle of my work day and I didn't want to take additional time off from work to drive him there, so he had taken the bus.

So I was very surprised when Don walked in the office door at six o'clock. He's never come to the office before without calling first.

"I just wanted one more chance to see you before tonight," he said.

I could tell he was upset about something. I asked him what is it.

"Dr. Freinkel wants to put me on Prozac. He thinks I'm depressed."

I was stunned. "Are you depressed?" I asked, rather stupidly.

"Dr. Freinkel said he thought I was depressed and that my depression was contributing to my feeling of hopelessness and helplessness. He said they were getting in the way of my seeing my cure as a done deal."

This was too much for me to take in. I told Mark I was leaving for the day. On the way down to the car and on the way home, Don told me more.

"The session brought up a lot of stuff around the hemorrhage and my feelings of helplessness."

I was still trying to catch up. Don? Depressed? I had been telling people he was in good spirits. Now he's going on medication? "Has Freinkel looked at possible drug interactions with Dilantin and Thalidomide?"

"Yes. He said both of those were depressants, and that might contribute to my depression."

"What signs of depression did he notice?" I asked. I've suffered from depression myself and so has Don. I went over the inventory in my mind. I still didn't see a fit between what I observed and the classic definitions of clinical depression. Had I missed something?

"He said I had a flattened affect and long pauses in my sentences."

Well, yes, but those are also effects of hemorrhagic stroke and surgery. He had been frustrated by having control of his life taken away after the bleed, but that was six months ago. He'd come back after that. Why was he feeling helpless now? And why was Freinkel so quick to prescribe drugs?

"Has he talked to your other doctors?" I asked.

"He wanted to know what doctors to call. I gave him Cheri's number."

Cheri Forrester is his primary care physician, but she'd hardly be up-to-date on his latest brain chemistry. "Didn't you tell him to call Prados or Peterson?"

"No."

"I think you should check with your neuro-oncologists about the possible drug interactions with Prozac." He said nothing. "Do you feel depressed?" I asked again.

"Well, there's the flattened affect."

This wasn't an answer to my question. Or rather, it was Freinkel's answer to my question. I wanted Don's answer.

When we got home, we sat on the couch. He rested his head on my lap. I wanted to reassure him somehow, to show him that it wasn't as hopeless as it may feel to him now.

"You recovered from the bleed in record time," I told him. "You were going to The City every week, putting in fifteen hours a week, going bicycle riding. You were pretty independent."

He was still uncommunicative. I decided perhaps it was better if I just held him for a while. So I did until it grew past the time I had to leave for rehearsal. When I left, he was sitting down to a bowl of cereal for dinner.

At rehearsal, my friend Ken asked me how Don was doing. Ken had had stents put into his cardio arteries around the time Don was going in for his follow-up angiogram.

I told Ken that Don's therapist wanted to put him on Prozac and I had strong misgivings about it.

"I would, too," Ken said.

"The trouble with Don is, he's too easy to manipulate, especially by a strong personality. And this therapist has no shortage of strong opinions. If Don's faced with a person who wants something and it conflicts with what he wants, he'll give in to the other person. He can't stand the confrontation."

"Sounds like he has a low self-image."

"And if you tell him there's something wrong with him, he'll believe it."

"That fits right in."

I was afraid both these things had happened in Don's session with Freinkel. Don had simply caved to a stronger will.

On the way home, I realized there were two more things that bothered me about the depression diagnosis. First, it seemed premature. This was only Don's second therapeutic visit with Freinkel, although it was their third meeting. Their first meeting had been an information-gathering interview and Don had been pretty much in charge. I had gone with him, and I don't think anyone could have watched his dynamic intellect and thought he was depressed. So how could Freinkel come to a conclusion of clinical depression in only two fifty-minute sessions? An accurate diagnosis takes longer than that.

Second, I had an immediate adverse reaction to the suggestion that Don layer another drug on top of his already complex regimen. From my experience with dysthymia, the first approach to depression is to treat it with therapy, not chemistry. Only if the client is showing serious symptoms - loss of sleep, weight loss, talk of suicide - should drugs be used.

I was also afraid. Had I really missed so obvious a problem? Wouldn't one more drug make Don even more inaccessible to me?

I had calmed down some by the time I got home. Don was lying down in bed but not yet asleep. I told him my feelings. "I would feel a lot better about the Prozac if you did two things," I told him. "First, I think you should get information from your neuro-oncologists about potential drug interactions. Second,..."

I got this far when Don got up out of bed and walked down the hall to the bathroom. He hadn't said anything, not "Excuse me," or "I'm going to brush my teeth." He just got up and walked out of the room.

I waiting in the room for him to return, burning off my anger by folding the laundry he'd done during the day. When he got back, he had his toothbrush in his mouth. He was brushing away as I resumed. Could he hear me?

"The second thing I'd like you to do is get a second opinion. I'd like to hear Freinkel's diagnosis validated by someone who knows you."

He didn't answer. Instead, he returned to the bathroom. Damn it, I thought, you're not getting away from me. I pursued him down the hall. "I'd like someone who knows you, who knows what you've been through in the past year, to see you and see if he comes to the same conclusions."

No answer.

"So, are you going to call your neuro-oncologists or do you want me to?"

We returned to the bedroom and Don got under the covers. He said, "I don't know why they would know about Prozac. Freinkel is the psychiatrist."

"I don't see how Freinkel could know more about drug interactions with Dilantin than a neuro-oncologist who prescribes it. They've probably seen lots of drug interactions with Dilantin."

"Freinkel said he was concerned and was looking into it."

Well, that was news. Don continued, "I told him I already felt like a chemical laboratory and he said he could appreciate that." He was quiet for a while. "I'll check up with him and see what he's found out," he said eventually.

"Don't you think you should tell your neuro-oncologists yourself so they can at least keep track of what you're on?" I asked.

Silence.

"Is it okay with you if I tell them?"

"Sure."

"Okay then. You'll follow-up with Freinkel and I'll tell the neuro-oncologists. What about getting a second opinion?"

Silence.

"It can be someone you know, like Angelone. He'd be in a good position to know if there's been a real change in your affect since he saw you last. That was, what, three months ago?"

Silence.

"Or I could arrange for my therapist to see you. I'm just concerned that Freinkel made this diagnosis in just two visits. I think it takes more than that."

"Freinkel thinks my cortisol levels are high. Fear and stress raise cortisol levels, and cortisol depresses the immune system."

This seemed an odd justification. I put the last of the laundry away and got into bed with him. "Has he measured your cortisol levels? If he thinks the Prozac will bring them down, he has to measure them first, then treat, then measure again."

"He's a psychiatrist. Psychiatrists have a tendency to treat by altering brain chemistry."

So what? I wanted to scream. Just because that's the way they operate doesn't mean you have to go along! Instead I said, "I've had a lot of therapists, as you know, and two of them were psychiatrists. Neither of them was quick to prescribe drugs. Of course, they were in Colorado and the Midwest. Perhaps there's a different standard out here in California, a more ready reliance on chemistry."

Don lay on his back, eyes shut, and arm flung over his head. I wasn't even sure he was still awake.

"If you don't want me to talk abou this, that's okay," I said.

His eyelids flickered, then he took a deep breath and said, "No." But he said nothing else. After a while I said, "Well, I can tell from your lack of response that you'd really rather not hear all this, so I'll stop talking now."

I curled my body up next to his and prepared to sleep. We lay together like that for a while.

"I was looking forward to it, actually," he said at last. "I thought it would raise my spirits."

I took a deep breath. I had been wrong all along. He really was depressed.

"The decision is yours," I said. "I told you months ago that whatever course of treatment you choose, I will support you. I have my own opinions, of course, but the final decision is yours. You're more in touch with your body and what you need than anyone else. You're in charge. You're the boss."

He reached over and squeezed my hand. "And I don't want you to think I don't want to hear your opinion. I want you to tell me what you think."

"Okay," I said, "deal."

A few moments later, we were both on the verge of sleep. A question came to me. "What was that brain chemical he wants to regulate?" I asked.

"Cortisol," came the sleepy reply. "Stress and fear causes it. Suppresses the immune system."

I resolved to findout all I could about cortisol.

Wednesday, October 13
It was a busy day at home this morning. The tree trimmers had arrived and began taking down the leaning pine in my back yard and trimming the trees out front. They went to it with such vigor and such immediate results that I didn't realize they had blocked my driveway with felled tree limbs. By the time I was ready to leave, I couldn't open the garage door. They had only one chipper and it was busy eating the pine tree, so I had to walk to work. Don joined me on his way to the bank and then to The City to do library research.

On our way up Castro Street, he told me, "If I survive this thing, and I have every intention of surviving this thing, I've made a kind of bargain. I'll use my experience to help others who may be having or going through the same or similar experience. I can make my suffering something useful for others. I don't presume I can teach them, but if I can let them know I know what they're going through, that alone might be of help."

This was the first time I heard Don "bargain" about his cancer. What were Kubler-Ross's stages? Anger, denial, bargaining, acceptance? Whatever they are, I found Don's use of "bargain" chilling. I guess I'm still in denial.

I spent much of my "work" day today on the telephone. I spoke with Deborah, Dr. Peterson's nurse, about possible interactions between Dilantin and Prozac. I also asked her what Don's latest Dilantin levels were, since we had not heard back from the most recent test. She said she would call me back with the results as soon as she looked them up. She said she wasn't familiar with specific interactions with Prozac, but other anti-depressants can affect Dilantin levels in unpredictable ways. She recommended checking Don's Dilantin "a couple of weeks" after starting Prozac, and she faxed me a bloodwork form so we wouldn't have to stop by the clinic to pick one up.

Next, I called Margaretta, Dr. Prados's nurse. She knew of no interactions between Dilantin and Prozac, and did not know if there were any interaction with Thalidomide. "You might worry about sedation," she said. Indeed. She took the time to look up what she could in the PDR and read it to me: "Thalidomide is reported to enhance the sedative activity of barbituates, alcohol, chlorpromazine, and reserpine." Neither of these last two is the generic name for Prozac, fluoxetine-hydrochloride. She concluded by saying, "Any psychoactive drug can affect the ability to drive a car or operate hazardous machinery," and cautioned that Don's Dilantin level could go up.

Finally, I called Forrester, though Don had said that Freinkel was going to call her himself. What I got was quite a surprise. She was leaving on a trip soon, though she didn't say when she was leaving, how long she would be gone, and when she would be back. Her practice was being split between two other doctors. I chose to go with Steinbach, with whom Don and I had dealt once before.

I was once again disappointed about her unavailability. I feel the same way about my own primary care physician. He's a good doctor, but I haven't seen him in over a year. At that point, what good is it to call him "my" doctor? I'm beginning to feel this way about Cheri. Don hasn't seen her since that dreadful office visit in June. Who is Don's doctor now? Isn't there anyone we can rely on?

Anyway, Dr. Forrester had some opinions about the Prozac and the diagnosis of depression. She said, "I don't questions the treatment, but I wouldn't go with Prozac because is can lead to weight loss, and you say Don has already lost 10 pounds in the last month. I would go with Zoloft."

"Do you know of any drug interactions with Prozac?" I asked.

"The prescribing doctor needs to check for interactions with Thalidomide," she said. She then asked me for more details about Don's "depression": "One of the key things is the ability to take pleasure in the things that used to give him pleasure."

"Well, he hasn't been out riding since the surgery. That's what gives him the most pleasure."

"How does he feel?"

"I would have said he felt fine, but last night, he told me he was actually looking forward to the Prozac."

"If he's looking forward to it, that's a real sign that he is depressed."

So, I was wrong after all. I guess I was just seeing what I wanted to see, and what I wanted to see was a Don who was getting steadily better. I thanked Dr. Forrester and hung up.

Finally, I called Dr. Angelone. I still wanted a second opinion, even if I now felt that Dr. Freinkel's diagnosis was correct. I got his answering machine, left a message, and later that day, he called me back.

He said he was glad I had called. He had lost Don's phone numbers and so had lost the ability to keep in touch. I asked what became of their plans to meet earlier this month. He said he had first made an appointment, then had to reschedule it because he had double-booked. Then he said Don cancelled the rebooked appointment because he couldn't get a ride.

This was news to me, and I said so. I thought Don was still trying to get a rescheduled appointment. I didn't know he had turned one down because he couldn't get a ride. I had told him I could drive him if I had a few days notice, and I certainly had had a few days notice for the rebooked appointment (though not for the original one).

Angelone appologized for losing the phone numbers and said he now had them because I had left them on his machine. He said he would be happy to see Don again.

"When?" I asked.

"I have an opening tomorrow at eleven," he said.

"We'll be there. I'll have to double-check with Don to make sure he doesn't have any other appointments, but I'm pretty sure he doesn't. I'll drive him up there and we'll be there tomorrow morning."

We said good-bye and I called Don and told him about the appointment. He thanked me. He said he had called Angelone back with a list of days and times he could make appointments, but that he hadn't heard back and hadn't followed up. The most convenient time for Don was afternoons, and Angelone had other duties in the afternoon. Don wanted afternoons to be certain he could make it up to Ross in time, allowing for delays in transferring from one transportation medium to the next. I told him I would take him to Angelone from now on. We'd stay overnight in Oakland the night before, I'd drive him from Oakland to Ross, he'd have the appointment, then the two of us would drive to Mountain View. It would make for a late start on my work day, but at least Don wouldn't be waiting on street corners for hours at a time.

We agreed that this plan would work. For tomorrow, though, we'd just have to get up very early - around 7:00 AM - in order to leave Mountain View by 7:30. Even though the appointment wasn't until 11:00 AM, I wanted to have plenty of time, since we would be passing through The City right at morning rush hour.

I left a final message for Angelone saying that Don was free to make the appointment. I asked him to call back and leave us a message to confirm.

I made two more calls this day, but these were for me. I called the Camaldolese Monastery south of Big Sur to arrange for my retreat. They had no public accomodations when I made my first call, but the guestmaster suggested I call back in the afternoon and speak with another father, who might be able to accomodate me in one of the cells inside the cloister. This was possible because of my friendship with Marc Rene. When I made the second call late in the afternoon, I was relieved to hear that a cell would be available for me. I thanked the priest and breathed a sigh of relief. After a day like today, I'm going to need it.

Thursday, October 14
We got up groggily at 6:55. I opted for a shower instead of breakfast, while Don ate a bowl of cereal and sat down with is bag of bottles and pills from his Chinese herbalist and Dr. Block.

At 7:25 AM, I told Don we were five minutes away from leaving.

"When are we leaving?" he asked.

"At 7:30, just like we agreed to yesterday," I said.

At 7:30, I backed the car out of the garage and waited for him in the driveway. We do this fairly often. I tell him we're leaving, I back the car out, and he gets in on the driveway. The garage is too crowded for him to squeeze into the passenger-side seat if he's carrying much with him (and he often is).

Five minutes later, I'm still in the car, waiting. I turn off the engine and go back in the house. Don is still at the dining room table, fiddling with his supplements.

"Don?" I say impatiently. "Come on! I've been waiting in the car for five minutes. We're late!" I was angrier than I've been in a long time and a bit surprised at myself. It was more than just the early hour or Don's worse-than-usual lack of focus. I think I was anxious about the rush-hour traffic. But most of all I was sick of doing all the work.

Traffic was not bad at all. We arrived in Ross nearly an hour early, which gave me time to have a little bite to eat at Marmalade's. It brought back memories of when Don was living in Bolinas and I was driving him to Angelone's on Monday mornings, then walking down the bike path to outpatient therapy at Kentfield. God help me, but those seemed like happy times compared to now!

The session with Angelone went well. He invited me in as well, and I had cleared it with Don beforehand that it was all right for me to be in on this session.

Angelone did not have much to say about the Prozac, though he did say, after talking to Don for nearly an hour, that he noticed differences. "You do have a flattened affect and your cognition is slow, which makes it seem like you are depressed."

He took what Don and I later thought was an odd tack during most of the session. He talked about the spiritual aspects of dying, how death is not an ending but a transition, and that spiritual approaches to death and dying can relieve a lot of the anxiety about it. He even asked Don if he would like to get in touch with a spiritual person such as a rabbi or priest or monk.

Both Don and I found this last question very odd. Angelone seemed a bit irked that Don wasn't tuning in on his "spiritual approaches to death." I was a little appalled at it myself. Don may die of this cancer, but he is not dying yet and that is not the focus of our attention now, anyway.

Angelone made one very good point, however. At this stage in Don's recovery, it makes no sense for him to be going to San Francisco and back. "It takes a lot of your energy and you need that energy to focus on your healing," he said. Don readily accepted this and to my great relief said he would contact WebMD and tell them he was no longer coming into the office.

There were two other issues Angelone addressed. First, Don was interested in going off Dilantin but was uncertain if he was still at risk for a seizure. Don hoped that Angelone could do an EEG on him that would determine if he were still at risk. Angelone said that while Don was on the Dilantin, the EEG results would be difficult to interpret. (This fits in with how things were going in June. It wasn't until Don started tapering off Dilantin that Angelone started making plans for an evaluative EEG. We were just days from that evaluation when the tumor was found.) Angelone had an interesting take on the seizures. Though Don has always feared them, Angelone said they were minor. As long as he was not driving, they posed no real risk to him.

Second, Don wanted to work on the field cut some more. Angelone was not eager to start in on that again until he was assured that Don would not be wasting energy trying to get to see him. He also seemed to think that there were more substantive psychological issues that needed to be faced before working on physical rehabilitation using QEEG.

To that end, we made two appointments for Mondays in November. We chose Mondays so Don and I could do a leisurely drive up to Oakland the day before, then drive to Ross on Monday morning. Because we would already be halfway there, we wouldn't need to start so early nor would we have to drive through the morning rush. So we set up for 11:30 AM appointments on Nov. 8 and Nov. 15.

He had spoken to us for an hour and fifteen minutes and would have spent more time but another patient had shown up for her appointment. We said good bye, and Angelone made certain Don knew he would be happy to serve him in whatever capacity he could.

Don was cheered by this session, and I found my spirits were lifted, too. It had been like visiting an old friend - complete with old, crotchety habits one has learned to put up with - and not at all like yet another doctor's appointment.

On our way back to Mountain View, I told Don, "I've figured out another reason why I reacted so strongly to Freinkel's prescription of Prozac. I didn't want another drug to take another part of you away."

"I understand why you feel that, but I don't think Prozac will do that. If it does, or if it doesn't work, I can always just stop."

"It may take a while to learn if it does work."

"I know."

"I also don't trust Freinkel."

"Why not?"

"You remember when he said you need to limit your contact with people who don't believe you will survive? I'm afraid he's going to say I'm one of those people, and he's going to tell you to cut off your contact with me."

"Well, Freinkel doesn't know anything about our relationship, and there's nothing that would make me cut off my contact with you."

"But you do know that I think about your cancer in a different way, don't you?"

"How so?"

"In my experience, or rather, in my experience with my sister, cancer is not something you can say 'You're cured!' with. Even after five years without recurrence, you're not really 'cured.'"

"Yes, I know. That five year thing is pretty arbitrary."

"And at least with my sister's cancer, all it meant was that after five years, your chances of getting cancer or having the cancer recur are simply the same as someone who has never had cancer at all. You could still get it; it could still recur."

"I visualize it as 'cancer free.'"

"And I guess that's how you and I are different. I see it as 'living with cancer.' I don't see it as something that you're eventually rid of. It reaches an equilibrium, a stasis. But you're always living with it."

I didn't tell him what I had been learning from the BRAINTRM list, that his particular kind of cancer always recurs. Even if you read the "long-term survivors" stories, every single one of them has recurrence or talks about "living with" or "managing" their tumor, not "recovery from cancer" or "complete remission." This fundamental difference between how Don thought of his cancer and how I thought of it had been a silent, growing rift between us, a cancer in its own right. I was glad to get it out in the open.

Friday, October 15


Saturday, October 16
Don and I went to FrontRunners together for the first time in weeks. I introduced him to David Ellison of the Gay and Lesbian Sierrans. Perhaps there's an opportunity for us to socialize with that group, too.

After coffee, Don and I went home and, at his suggestion, went right back to bed for a nap. However, we didn't nap. It was restorative all the same.

The doorbell rang at 1:30 just as we were about to jump in the shower. Instead, we both hastily pulled on some clothes and Don answered the door. It was Leah and Rob, who had said they were coming by for a visit this afternoon. Leah is a nurse and long-time friend of Don's; Don also knows Rob, who works for the National Brain Tumor Foundation.

We had a cheerful visit, in which I showed off the house and grounds. Now that the tree is gone, the grounds really do look like they're worth showing off. Then we went into the living room and chatted. Don mentioned that he was going on Prozac and had, in fact, started just this morning. Both Leah and Rob thought this was a good idea, though they both cautioned that its effects aren't apparent until a few weeks - sometimes four - into the treatment.

Don had talked about running a gay poets' soiree with Rob, so I was very encouraged when Rob asked him, "Are you writing any poetry?"

To my surprise, Don answered, "No. I don't really feel like writing poetry now. I'm not doing the things that my poetry comes from - the biking, being in contact with the earth, the physical stuff." I reminded myself that we had talked about going for a hike tomorrow in the hills above Stanford, and that Don had talked about fixing his bike. It was time we took some action in those directions.

Rob noticed we had a copy of Search, the NBTF newsletter, on the endtable. I told him we had gotten the Spring issue as requested, but that the Summer issue he was looking at was sent by a friend. He said he would make sure our subscription was up-to-date. He then told us that they got an enormous number of phone calls after the Spring issue's article on avoiding glucose. "Some people ran to their doctor and said, 'You've got to take me completely off sugar!'"

Don nodded. I said, "One doctor we saw said that it was pointless to try to cut down on the amount of glucose going to your brain."

"That's right," Leah said. "The liver just makes it up on demand."

"Now I hear that 20/20 [the NBC news show] will be doing a special on cell phones and brain tumors," Rob said. "I'm sure we'll get a flood of calls on that. I've been trying to get ahold of them to find out when it will air, but I haven't been able to get an answer."

"Don's friend, Jim, gave him his cell phone and is paying for the service," I said. "Some people may claim that cell phones give you a brain tumor, but in Don's case, a brain tumor gave him a cell phone."


That evening, after Don had gone to bed, my housemate Steve and I had a talk. I mentioned that I had been reading the BRAINTMR mailing list. "It's pretty upsetting," I said. "Almost all the people on the list who have glioblastoma or are taking care of someone with it have seen recurrence. I guess I've never really faced that reality, but that seems to be the case. It's going to come back no matter what we do."

"Has Don considered seeing an analyst?" Steve asked.

"He's seeing a neurologist and a psychiatrist."

"That's not the same thing."

"He's seeing the psychiatrist mainly because he's someone who has recovered from a brain tumor, though I don't know what kind."

"Maybe Don should be on Prozac."

"He is. He just started today."

"My friend Daniel went on Prozac and it made him do things... well, I wouldn't say it made him do crazy things, but it made him do things I know he wouldn't have done if he hadn't been on Prozac."

"Like what?"

"He inherited twenty thousand dollars from an uncle or someone, and he went down to Mexico for a vacation. Instead, he stayed down there for an entire month and a half and spent every penny. Not crazy, but not what Daniel would normaly have done."

"I guess that's what I'm afraid of," I said. "Everything since December has taken a part of Don away. The hemorrhage took away his memory, his sense of direction, and self-confidence. The Dilantin makes him fuzzy and confused. The tumor and the surgery and the radiation took away his vitality. The Thalidomide makes him sleep like a stone. I'm afraid the Prozac will make one more change in him, that he'll move one more step further away from me."


Leah and Rob Visit


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