Sunday, September 5
We went to see the exhibit on Arthur Wesley Dow and the American
Arts and Crafts movement at the Stanford Museum. I was impressed
with the woodblock prints and some of the ceramics. We were
delighted to see that the sofa we had been oogling at
Rockridge Antiques was part of the exhibit. It wasn't an artifact,
but part of the furniture they had installed to go along with a
permanent Arts and Crafts library. The sofas (there were two)
had leather cushions, so I could see the effect they would have
without having to go through the expense. I am now more than
ever set on getting a sofa like that.
It was a bright, warm (growing hot) day, and since Don hadn't seen
the Rodin sculpture garden before, I took him through it. "I
want to get a shot of you at the Gates of Hell," I said.
"Been there," he said, "done that."
Julia Morgan was mentioned in the Arts and Crafts book in the
library section of the exhibit, so I took Don to see Hostess House
(now the MacArthur Park restaurant). Afterwards, we strolled
up and down University Avenue, then went to see Singing In
the Rain at the Stanford. I was surprised at the number of
children at the 5:35 showing. The audience was remarkably
responsive, breaking into applause after several of the dance
numbers.
We returned home tired but happy.
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1. Don and a Friendly De Koonig Scupture
2. Lou at the Gates of Hell
3. Don and the Ennui of Damnation
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Monday, September 6
Labor Day
I spent the morning at Glyphic, working on a memory moving
algorithm. I came home around 2:00 PM for lunch, since that's
when Don's friend John was supposed to arrive. He did shortly
thereafter, bringing a lovely bouquet of flowers with him. I
happened to check the mailbox as he arrived, and he reminded
me that there was no mail delivery today.
The three of us went to lunch in downtown Mountain View, but
nearly all the usual places were closed for the holiday (plus
it was after 3:00 PM).
To my surprise, Lucy's was open, so I cajoled them
down the little alley to her shop, where we all had the vegetarian
rice bowl.
Don and John did a lot of reminiscing about their days at the
Integral Yoga Institute and at the Virginia ashram. After lunch,
we strolled along Castro Street, and I took Don and John's picture
at Civic Center, just outside the Center for the Performing Arts.
Back at home, Don showed me a pile of bills and Blue Cross
statements on the floor. "Jessica must have come by and dropped
these in the mailbox," he said.
"No," I said, "we picked up the
mail when we were in Oakland Saturday."
"But I've just opened these," he said.
"No, you opened them last night."
He looked puzzled, but I thought he would let the matter slide.
The three of us got into a discussion about spirituality,
sexuality, and human nature. I said I thought it a fatal mistake
for any spiritual path to exclude sexuality. John and Don talked
about the sexual scandle that had shaken Yogaville. John described
a yoga practice in which men can achieve orgasm without releasing
any sperm.
"Where does it go?" I asked, "into the bladder?"
John conceded that this was the physiologically logical place for
it to go, but that he didn't know the details of the practice. He
tried it once and it made him ache.
Twice during the conversation, Don got up and checked
the mailbox. Both times, I mentioned
that there was no mail delivery today, but something kept nagging
him to check it again.
Around 7:30, we decided to go out to dinner, but after a few
minutes of getting ready, John decided he had better get back
to The City instead. Don and I went out anyway. I needed to put
gas in the car, and on the remote possibility that Mollie Stone's
would be open, there were a few grocery items I wanted to buy.
The store was open and I found the items I wanted and got in the
checkout line. Don said he wanted to find some athlete's foot
medicine, and went off down the health and beauty aids aisle.
It was a while before he got back.
"Too bad I didn't have the cell phone with me," he said.
"Why?"
"I got lost. I could have called. 'Help! I'm in the dairy
section!'"
We laughed, but I could tell he was rattled.
Steve was home when we got back, so we sat down to watch
Billy's Hollywood Kiss. Don missed the first part because
he was on the phone - apparently talking to Annie.
He fell asleep on the livingroom floor, and when the movie was
over, I gently roused him and got him to bed. He told me Annie
was very upset with him because he had forgotten her birthday.
"It seems a lot of people forgot it," he said, "but me of all people."
"That woman has no sense of proportion," I said. "The surgery
alone would have explained your memory problems,
but you've had radiation therapy and drugs on top of that.
It's a wonder you remember anything."
"She has a wonderful capacity to take the slightest thing personally,"
he said. "And of course, I have the talent for assuming responsibility
for her feelings, so we were a perfect fit."
"In all the wrong ways."
"So, now of course I feel badly that she didn't have a happy birthday."
"She's an adult. If she had wanted a happy birthday, she should have
made some noise about it. I had one birthday that no one remembered,
and I vowed then it would never happen again. Some of my favorite
birthday parties are ones I've thrown for myself."
"I still feel bad."
I hugged him. "I'm sorry she didn't have a happy birthday," I said,
"but it really isn't your fault."
I felt really angry about this incident. Don can get lost in
a grocery store he's been in a dozen times. There
are times when he can't remember which room of the house he's
in, and days when he can't remember the month.
And Annie Loonie Linton is upset because he forgot her
birthday? She ought to be damned glad he can remember her fucking
name.
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Don and John at Civic Center
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Tuesday, September 7
Don was having tinnitis in and drainage from his right ear
and he wanted to talk to Dr.Hancock about it. However, Dr.
Hancock was unavailable after today's radiation session. We
were told he would see Don on Friday.
We dropped off Don's Thalidomide prescription at
the pharmacy. They told us it would take about a half an hour
to fill, so we told them we would come back for it tomorrow.
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Wednesday, September 8
Dr. Mehta saw Don after radiation today. He did "real
doctoring," getting out a scope to look in Don's right ear,
a speculum to look down his throat, and other typical
office visit things (though he did not take his temperature).
He concluded, "I think you have a virus. I could give you
and antibiotic, but as you know, that wouldn't do much good
against a virus." Don declined the offer. As he told me later,
"I'm already enough of a chemical experiment."
When we arrived at the pharmacy, we were told we
would have to pay for the Thalidomide in cash. The insurance
company had denied payment because the prescription had been
filled "too early." It seems Don was not yet supposed to be
out of Thalidomide, so they wouldn't pay to have him restock.
The cost? $2,090. We said no thanks. The pharmacist agreed
to try billing again on Friday. That might be close enough to
when Don is supposed to have run out for the insurance company
to honor their commitment.
Friday is the last day of Don's radiation treatment,
the last day we will be going to Stanford until our
appointment with Peterson in October.
It's the only pharmacy within fifty miles that stocks
Thalidomide, and he has only a week's supply left.
What will we do if they don't honor the prescription Friday?
And who are they to say when a prescription should be filled,
anyway? What if Don were going on a vacation and leaving today?
He'd need to take the additional pills with him, but
neither of us has $2,000 ready at the drop of a hat.
What gives insurance companies the right to put critically
ill people through this kind of stress for no good reason?
Are they banking on the possibility that he might be dead in
two weeks, and that would save them the cost
of unused drugs? What a sick and perverse system.
This is the sort of thing that leads people to thoughts of
lawsuits and explosives.
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Thursday, September 9
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Friday, September 10
Today was the last day of Don's radiation treatment. I took the
opportunity to take a few pictures of Karen, the technician who
has been tending to him for the past six weeks. Don has been
very pleased with her gentle manner and her willingness to explain
to him what she is doing.
While Don was undergoing treatment, I left some current issues of
Genre, Out, and The Advocate
in the waiting room. I figured
it was time someone spiced the place up. I know I had certainly
gotten all I could out of the three-year-old copies of
Airline Pilot Magazine.
Afterwards, we waited to see Dr. Hancock. We were told earlier this
week that he would see Don on Friday. However, when I mentioned it
to Karen, she seemed surprised. She put Don's file out for the
appointment nurse to take, who took it and went looking for
Dr. Hancock. Karen gave us Don's "mask" as a souvenir and we
hugged her and said good-bye.
As we waited for Dr. Hancock by the waiting room,
I noticed a man in his late 50's
reading on article on Ricky Martin in The Advocate. A
copy of Genre was under his chair. A nurse called to him,
and he got up and put the Advocate on the chair behind him.
As he left, I saw a little old lady with white hair in a
hospital dressing gown make a bee-line for it.
The appointment nurse showed us to an examining room, but came
back a short time later. "I'm sorry," she said, "but
Dr. Hancock is in surgery. He won't be able to see you today
after all."
We both sort of shrugged. There were other things we had to
do today, so it didn't matter much that the appointment had been
cancelled, though some advance notice would have been nice.
We were on our way down the corridor when the nurse rushed back
to us. "He's here after all," she said, and showed us back to
the room.
Dr. Hancock entered and explained that he was out of surgery early.
He had been doing some radioscopic surgery (I hear he's particularly
good with prostate cancer), and, as he put it, "for once the machines
didn't crash and we got out early."
He asked Don how he was doing. Don mentioned his concern about
his ear again: he could hear fluid draining from it, but didn't
know if it was an allergy, a cold, or some reaction to the
radiation.
Dr. Hancock got out the "ear-o-scope" and looked in Don's left
ear. "I know this is not the one you're concerned about,"
he said, "but I want to look anyway. Wave your hand on the
other side and let's see if I can see it."
He concluded that Don probably had a cold and that Sudafed should
take care of the symptoms until it passed.
I asked him, "Since the radiation treatments are over, what
becomes of our relationship? Do we see you again? When and how
often?"
"It depends on how much time you enjoy spending in waiting rooms," he
said. Then he
re-confirmed the date of the next MRI - September 27 - and the
date of our next appointment with him - December 10. He said
there would be regular MRIs every two to three months after that,
and that we could always make additional appointments to see him.
Then he wished us a good trip to Hawaii and we shook hands.
As we were leaving, he noticed the
"mask" sitting on the examining table. "Keep it," he said.
"They're expensive, and we might need it to do some touch-up
work."
Out in the parking lot, Don confessed that he didn't much like
the idea of "touch-up work," and that he was going to give his
cells a good talking to about it.
Don stopped by Dr. Freinkel's office to drop off some poems, a
letter asking him for recommended readings, and to make an
appointment to see him on September 29th.
"I figure, one way or another, I'm going to want to talk to him,"
he said.
We stopped by the house so I could pick up Dad's phone number
at the Hyatt in Monterey and drop of the Thalidomide (they filled
the prescription after all), then we went to Glyphic World Headquarters
so I could go to work and Don could get some cash from Bank of the
Universe before heading up to San Francisco on the train. However,
when we got to the bank, Don realized he had left his wallet,
keys, and satchel back at the house. I gave him my keys and he
started to walk back home. The plan was that once he picked his
stuff up, he would walk back to downtown Mountain View, return
my keys (so I could drive to lunch), and take the next train.
Shortly after I started work, I realized that Don shouldn't go to
San Francisco today because he had an appointment. An researcher
from UCSF wanted to interview him. She was doing a study on the
causes of brain tumors and wanted to ask him questions about
diet and lifestyle. The appointment was for noon. I called Don
up and reminded him of it, and he said he remembered it too, once
he had gotten home. Now, the problem was getting my car keys back
to me in time for me to make the luncheon date with my former
co-workers from Sybase.
Steve came to the rescue. He drove Don to the office so he could
return my keys. Don hung out while I got some work done (but not
much), then I drove him back to the house. The researcher was
waiting on our front porch when we arrived. The final problem
was solved when Steve agreed to drive Don to his office in the
Presidio, thereby eliminating the need to catch a train that
would probably only get him there in time to turn around and come
back.
Mark and I continued working on the memory manager the rest of the
day. The segmented memory model really posed some difficult
problems, despite yesterday's insight that seemed to be so helpful.
We wrapped up around 7:00 PM. While Mark ran a million-line test,
I came up with a somewhat simpler way to write the code (though
it didn't simplify the algorithm any). Mark approved the change,
and I was implementing it when Don called to say he was on the
eight o'clock train.
"Don't you mean the seven o'clock train?" I asked him. It was
just after seven.
"No, the eight o'clock," he said. "It's still sitting in the
station."
I was sorry that he would have to wait 45 minutes before the
train even left the depot, and sorrier still that it would be
another hour before he got home. "Have you had any dinner?"
I asked.
"Oh, I'll get something to munch," he said.
"I'll meet you at the train with something to eat," I said.
"Oh boy."
He talked about his day and the interview with the researcher. He
found her questions somewhat dubious. Most of them tried to pin
down the exact amounts of certain foods he'd eaten in the past
ten years. Who can remember that? I wondered. And what fool would
depend on the memory of people who have just had brain surgery?
We finally said good-bye and I got back to coding. It kept my
mind occupied and helped me feel productive. God knows, today
would have taxed the patience of any employer, what with my
arriving late, leaving for lunch early, returning from lunch
late, and a project due by the end of the day. But Mark has been
very generous and supportive. He has even given me Monday off
so I can be with my Dad.
When I finally picked Don up at the station, he looked exhausted.
"Are you tired?" I asked.
"Somewhat," he said. Then he put his arms around me. "I want to
live with you," he said in a small, almost tearful voice.
"Nothing would make me happier," I said.
In the car, I presented him with a slice of banana bread and
a smoothie whipped up by Double Rainbow.
We talked about his day at work.
Turns out he arrived just in time to attend a farewell
party for David and Cathy, and Hasci is leaving as well.
That makes Don one of the last if not the last DMKer there.
When we arrived at home, Don got out of the car and went in through
the gate, as he usually does. But then I saw him go past the
window, not toward the house. When I locked up the garage, I
went around the corner and asked, "What's up?"
He was standing by the garden. "Just saying hello to the kids,"
he said. He turned around and hurried into the house. I noticed
a wet streak down the front of his sweatpants.
In the house, he seemed shy and a little frightened, keeping his
back to me. I hugged him
from behind. "It's okay," I told him. "You're here now and I'm
with you." He relaxed. We stayed that way for a little while.
Then I took him to the bedroom where he got out of the damp
sweatpants and underwear and into a fresh pair.
That night, as we were getting ready for bed, he asked me to look
at the underside of his arms and his lower back. I saw nothing.
"It feels iritated," he said, "like chafing from my clothes
or a sunburn. I'm worried it might be neuropathy."
Neuropathy is one of the side effects of Thalidomide, and it can
be irreversible. Don said he would call Prados's office tomorrow
and ask what he should do.
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1. Karen Makes a Final Inspection
2. Karen at Her Station
3. Dr. Hancock
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Saturday, September 11
Don was unable to reach anyone in Prados's office. However,
he was routed to Dr. Zakhary in neurosurgery. She said she
would try to get someone in neuro-oncology to answer his
question.
"I've never met her, have I?" he asked me.
"Yes, she's Dr. Berger's resident or whatever. She took the
dressing off your head the day you were discharged form UCSF."
"Oh. I don't remember her."
I did. She's the one who described the tumor as
"about the size of a ping-pong ball."
Later that afternoon, a neuro-oncologist did call back.
Don took the call, so I don't know who he spoke to, but
it wasn't Prados.
"She said neuropathy usually starts in the hands and feet, where
the nerves are the longest," he said. "She said to stop taking
the Thalidomide until we hear from Prodos's office."
This sounded like good, cautionary advice, but it also sounded
like a guess. From everything I've read, neuropathy doesn't
show up under the arms and around the midriff.
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