Sunday, October 17
Today, Don and I went for at hike up the hill that's the site of
Stanford's Radio Astronomy Telescope, commonly called "The Dish."
The day was quite hot and we foolishly started out without any
water. By the time we got to the top of the hill we were both
very warm. Don complained that he couldn't keep things in focus and
I began worrying about sunstroke. Since this was on the warning
label of the Prozac he's just started taking, I mentioned it and
told Don to tell me if he felt dizzy, light-headed, or if things
began to lose their color or shape. This succeeded only in
alarming him, and the rest of the hike we were both somewhat
stressed out by our hyper-vigilance. He said he enjoyed the
hike, however, and would like doing it again sometime. With
water.
Don fell soundly asleep this evening, possibly because of the
exercise we'd both gotten. By the time I got to the bedroom,
he was snoring peacefully. Unfortunately, I had started to change
the bedlinens earlier in the day and had not completed the
task. There was nothing on the bed except the mattress pad.
I had to wake Don in order to put the fresh sheets on. He took
the opportunity to go to the bathroom.
Don had made the bed by himself the previous time, so I wanted to
do it myself before he got back from the bathroom. I noticed at
once that when he had made the bed a week before, he had put the
mattress pad on sideways. Fortunately, it's very elastic. I
took it off, rotated it 90 degrees, and put it back on. Then I
put on the fitted sheet, the top sheet, and put the two pillows
in their cases. Don was just getting back from the bathroom
as I prepared to put on the comforter. He grabbed the edge of
the top sheet, expecting to help me, but then noticed the bed
was fully made.
"You got it all done?" he asked in sleepy surprise.
"Yes," I said. "I work quick."
"It took me half an hour last time," he said and crawled under
the covers. He was nearly asleep again by the time I crawled in
beside him.
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Our Hike to the Stanford Dish
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Monday, October 18
Don deposited the last of the Fund for V today. It was a check
for a thousand dollars, but he had submitted receipts for more
than $2200. I haven't seen an appeal for funds since the first
one went out nearly ten months ago. Dr. Remen suggests I write
to Michael Lerner and find out if he has plans for continuing the
fund.
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Tuesday, October 19
I called Dr. Peterson today. It had been a week since I spoke to
Deborah and I still had not heard what Don's Dilantin level was.
I also wanted to ask about the rash and flaking on Don's face and
chest. Someone on the BRAINTMR list had sent me an alarming
message, saying that reactions like this could lead to death.
I found that very unlikely, but decided to check.
When Deborah returned my call, she said that Don's Dilantin level
was 11.6 on October 5 - on the low end, but within therapeutic
range. Don has almost always been on the low end of the range.
I told her about the rash and she said she would speak to Dr.
Peterson about it.
I missed Dr. Peterson's call, but when I called back, she was
available. She asked me if the rash itched. Surprisingly, I
didn't know. Don doesn't complain of it itching. It's more of
a cosmetic thing, plus the flakes so cover the lenses of his
glasses that it gets difficult to see out of them (or to see
into them to see his eyes).
She said that although it was not a typical reaction to Dilantin,
but with the Thalidomide in the equation, there was no telling.
Since Don had never had a seizure, she said perhaps
we should consider going off it.
I was elated. "He doesn't drive now, does he?" she asked.
"No," I said, "and he doesn't operate any hazardous machinery,
unless you count Internet Explorer."
"Then cut down to 200 mg. tonight and 100 mg. tomorrow night.
Then stop it entirely."
I was surprized at this rapid step-down schedule.
The last time Don came off Dilantin, back in June,
we reduced his dosage
by 100 mg. every ten days. It took us several weeks to bring
him completely off it.
Don came into the office just about then. He was returning from
his appointment with Freinkel and said it was a really good one.
I asked Dr. Peterson if she would like to speak directly to Don
and she did. The two of them spoke (so I guess she had the
opportunity to ask him about itching herself). He mentioned
alternatives to Dilantin, and also said that Freinkel would be
contacting her himself. Then they said good-bye and Don hung up.
He looked at me and said, "Eeeee!"
"Are you worried about coming off the Dilantin?"
"Yes!"
"Well, we can take it more slowly if you'd like. We can step
down to 200 for two nights, then 100 for two nights, and then
quit. Does that sound better?"
"Yeah, much."
"I know you've thought of it as kind of a safety net. I'm glad
I'll be here this weekend so the two of us can keep an eye on
your reaction together."
"I appreciate that."
"So, it's 200 tonight and tomorrow night, then 100 on Thursday
and Friday. You'll be off Dilantin by the weekend.
I'm glad we're doing it this weekend. If you were doing it
the weekend after that,
while I was at the monastery, I wouldn't be comfortable."
"Me neither. Dr. Angelone will be pleased. He seemed to think
seizures were no big deal, anyway."
"What did Freinkel say?"
"He said he thought I ought to see a neurologist. I said
I thought he was a neurologist, and I really liked what he said
back. He said he was six years out of practice and didn't know
the latest medicines and treatment. He considered
himself my psychotherapist now, not a neurologist. So he gave me
the name of the one he uses in Atherton."
"That will be easy to get to. It's just north of Menlo Park."
"I wonder if it's within walking distance of the train station."
"I can drive you. You need to keep your energy for healing."
We then discussed how we would meet up for dinner. I wanted to
eat out, but Don didn't want to stay in downtown Mountain View
until dinner time. He wanted to go home and rest. I said I
would drive home and meet him there for dinner. He objected,
saying he knew I was sick of leftovers. He said he'd walk back
to the office and meet me here. I drew him a map on
the whiteboard, showing that if he walked home, then walked
back here and had dinner, then walked home again, that was
three trips for him, whereas if he walked home and then I drove home,
that was only one.
"The second plan better meets your need to not wear yourself
out," I said. "That, plus I promise not to lead you on any more
death-marches through the Stanford Hills."
"But it doesn't meet your need to eat out," he objected.
I drew an X on the map of his route home. "Then you stop
here and pick up some take-out," I said.
That seemed to satisfy him. As he left, I said, "If I can't be
your safety net, at least let me be your whoppee cushion."
He looked at me and smiled. "Whoppee," he said.
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Wednesday, October 20
After an exchange of e-mail messages between Michael Lerner,
Dr. Rachel Remen, and myself, I think we are in a position to
keep the Fund for V going. Dr. Remen will maintain the mailing
list, I will write appeal letters, Carol, Don's accountant
friend, will do financial administration (for free), and Michael
can bow out gracefully.
It was a relief getting this set up. Without the money in the Fund,
Don's resources would have been wiped out by now, despite the
insurance coverage.
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Thursday, October 21
Last night, I was bothered by nightmares. I dreamt I was in
a falling elevator, crowded with other people. "Would somebody
please wake up?" I yelled in a weary voice. I knew that as soon
as someone on the elevator woke up, the nightmare would end
and we would not all die a horrible death at the bottom of the
shaft. I was really angry when nobody did, and woke up more
pissed than frightened.
The second nightmare occurred just before waking. I dreamt I
was standing beside the railroad tracks outside my Aunt Pearl's
farmhouse in Wisconsin. My family often visited Aunt Pearl
and Uncle Harry when I was a boy. Some of my fondest memories
are of that place. The visits stopped when Aunt Pearl died of
liver cancer.
I was not a boy in this dream, but myself at my current age.
There was a mound of dirt about fifteen feet high on the edge
of the farmhouse lawn, near the railroad tracks. This would be
a good spot to watch trains from, so I climbed up it.
Don was sleeping up there, near the steep edge of the mound.
I didn't recognize him at first; he seemed just a mound of earth.
But when I kissed him, he woke up partly and took on human shape
and coloration. "It's time to go," I said, and gently tried
to pry him out of bed.
To my horror, I pried him the wrong way, over the edge of the
mound toward a fifteen foot drop. We hung there, over the edge,
too late to save ourselves from my mistake. Don was still
sleepy and unaware of the danger, but I was certain he would
not survive the fall.
And the dream ended.
I told Don these dreams.
"What do you make of them?" he asked.
"I think of dreams as a kind of focused introspection, a way of
making the irrational concrete so you can face it. I guess the
last dream relfects my fear that I will make decisions that will
end up hurting you."
"Well," he said, "I'm still pretty much of an adult. Any decisions
I make I make in full consultation with you, but they are still
my decisions."
I thanked him for telling me not to take responsibility for his
life. Nevertheless, I decided I would call Dr. Prados's office
and get one more opinion about Don's going off Dilantin.
I dropped Don at the ear doctor's then drove to work. One of the
first things I did was call Margaretta, Dr. Prados's nurse. She
was extremely reluctant to give me any advice.
"If another doctor has recommended his going off Dilantin, we
wouldn't get involved," she said. "People used to go on Dilantin
and stay on it forever. The new school of thought is that it
doesn't make much difference. It's the responsibility of the
physician who prescribed it to determine when to go off it. It
should be handled by a neurologist. Who said he should go off
it?"
"His neuro-oncologist at Stanford."
"Well, they're all neurologists at Stanford, Dr. Peterson and
Dr. Fischer. It should be followed by a neurologist."
After the call, I remembered that Dr. Freinkel also said Don
should be followed by a neurologist. This division of labor
makes no sense to me. Why can't it be just one doctor? They're
all treating Don's brain. It's the same patient, the same organ.
I just know that adding one more doctor into the mix means one
more person I'm going to have to manage.
Would somebody please stop this elevator?
I left work early to go to the library and look up everything I
could on Prozac, Dilantin, and Thalidomide. There was no information
on Thalidomide, but I read both the PDR and the USP on Fluoxitine
Hydrochloride (Prozac) and Phenytoin (Dilantin).
Both sources said Dilantin should not be stopped abruptly, and
that Prozac could cause the blood levels of Dilantin to go up.
One person on the BRAINTMR list was taken off her 400 mg. a day
Dilantin completely and three days later had a grand mal seizure.
Of course, she had been having grand mal seizures before she went
on Dilantin, anyway. Both the PDR and the USP said Dilantin was
not effective against focal seizures, which is the kind I expect
Don would have. So why was he on it in the first place? The
PDR said it was prescribed as a "prophylactic" after neurosurgery.
So, are the warnings against abrupt withdrawl applicable only when
Dilantin is prescribed to prevent preexisting seizures,
such as those caused by epilepsy, or do they also apply when it's
been precribed prophylactically?
I don't know. I looked up Dr. Peterson on the Stanford web
site. It verified what Margaretta had told me, that
she's a neurologist as well as a neuro-oncologist. That should
make her pretty familiar with Dilantin and its effects.
Maybe that's why she said it was
okay for Don to go from 300 mg to zero in two days. But I am
so mistrustful. In my paranoia, I can think of her saying,
"He thinks he can do without the Dilantin? Well, let's just
yank it out from underneath him and see if that teaches him
a lesson."
Doctors don't really think like this. Do they?
I shared none of these feelings with Don that evening, but when
it came time for him to take his pills, he said, "It's two and
seven tonight, isn't it?" meaning two Dilantin and seven
Thalidomide.
"When we first talked about this, we said you'd go down to
100 mg. of Dilantin tonight," I said. "That would be one pill.
How do you feel about it?"
"So I'd be off Dilantin while you were away next weekend?"
"Yes. If we keep on this schedule, you'll be off Dilantin on
Saturday, the day after tomorrow."
"How about if I continue at two pills this week, and go to one
pill next week? Is that a reasonable schedule?"
I weighed my own uncertainty against the warnings - both for
and against immediate withdrawl - I'd read on BRAINTMR. I
decided, since Don's exfolliating rash didn't seem to raise
alarm bells with his doctors, there was no rush to get him off
the Dilantin, and doing so would make him feel easier and
allay my fears as well. If we go down by 100 mg. each week,
I'll be back from my retreat the first full night he's completely
off the drug. Then I can keep an eye on him.
"Yes," I said, "that's a reasonable schedule."
Which part of the dream was I acting on? Had I just pushed him
over the edge, or was I keeping him from falling? Intentions
are what counts, but effects are what we have to live with.
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Friday, October 22
Don met me for lunch with two of his friends, Jim and Charlotte.
They were visiting relatives in the San Francisco area. It was
their trailer Don had stayed in during his time at the ashram.
We had a lovely lunch at Global Village, which Jim and Charlotte
graciously paid for. Afterwards, we tried to get some Qi Jing
Bian Zhen green tea at two local Chinese herbalists, but neither
of them had it.
I was going back to work after lunch and the three of them were
walking back home. I asked Charlotte to
hold Don's hand when they crossed streets. That may have been
unnecessary, but he was beginning to look tired to me. We all
crossed the street together, then I headed back to work. As we
parted company, Jim asked, "Is he doing better?"
I guess people think I know. The truth is, it varies from day
to day - almost from moment to moment - and with this kind of
cancer, you can appear perfectly healthy and go jogging with your
wife or partner or running buddy one day and be dead the next.
"Yes," I said, "much better."
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Saturday, October 23
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