Sunday, August 8
After a pleasant morning together in bed, Don and I went for
brunch at the Rockridge Cafe. Don did not remember the place.
His memory has been much worse since the surgery. He sometimes
says I am the only stable, recognizable thing he sees.
Don did remember the furniture store, however. We went there after
buying some chutney at the corner market. They had sold the sofa
we had admired the previous week. "Sorry," they said, "no foot
massage this week." Don admired a lamp with art nuevou curves
and a jade lampshade. I also liked it, especially the shade, and
after some discussion, I bought it. It was very expensive, but
the lamp in the livingroom has definitely had it. I hope this one
can replace it.
We had been talking about going for a hike in Mountain View
cemetary at the top of Piedmont Avenue for some time, and today
seemed like a good day for it. When we returned to the house,
Don asked Kent and Jessica if they wanted to come along. They
declined, saying they wanted to go for a bike ride instead.
However, we made plans to see a movie in Albany at 7:45 this evening.
So Don and I drove to the cemetary by ourselves.
The fact that we were driving
to a graveyard struck Don as amusing, as if we weren't all
heading there fast enough as it is. I agreed that, all things
considered, entering a graveyard under our own power was much
preferred.
We admired the crypts of Dr. Merritt and the Crockers. We spent
some time hanging with the Crockers. We got on the topic of
wealth and poverty, and Don made some excellent observations.
He noted that, while Republicans seem to believe that it is unnatural
for people to remain poor, the very policies they pursue seem to
ensure that they do. I noted that because of their
inherent conservatism, Republicans dislike change. They believe
that wealth, once acquired, should be permanent. Thus they push
for repeal of inheritance taxes. But if you fix the top of the
economic strata, I contended, you also fix the bottom. If people
cannot fall from wealth, they cannot rise from poverty. I don't
know why I believe this, but I do. Don spoke about how the recent
turmoil in Asian markets created an opening for the International
Monetary Fund to impose a Western economic model on countries where
such a model does not work. He argued that as long as a country
appeared to be following a capitalist economy, we assumed it was
also pursuing democratic reform. He called such an assumption
"bunk."
I find these conversations one of the chief joys of my time with
Don. He may forget where the exit to the restaurant is, and he
may leave the back door unlocked and open all night, but he is still
the intellectual equal of anyone I have ever met.
I took a picture of him with one of the caryatids supporting a
decorative arch, and when we got to the top of the cemetary,
he took a picture of me that also captured most of San Francisco
Bay from Oakland, past Yerba Buena Island and Alcatraz, all the
way out to the Pacific beyond the Golden Gate.
We got back around 5:20. Kent said he now thought 7:45 was too
late for a movie, considering they had to go to work tomorrow.
We looked for an earlier, closer film, found one, then Don and
I went out to do some shopping and banking. When we got back
around 6:30, Kent called us to say they were bailing on the
whole idea of a movie. Don, too, said he wanted to stay home
this evening. And so he and I hugged each other and said how much we
would miss each other, and then I left.
When I got home, there was lots to do. I did three load of
laundry, emptied all the trash cans and put out the lawn
clippings and recycling bins, wrote a check for the housecleaners,
paid bills and balanced a checkbook, folded as much of the laundry
as was done by midnight, and then spent two hours reading brochures
the American Brain Tumor Foundation had sent us last week. I
learned two things I had not known from the brochures. First,
once someone has received the kind of radiation therapy Don is
now getting, they usually do not get radiation therapy again.
The risk to healthy brain tissue is too great. Second, the greatest
feelings of fatigue usually occur in the six weeks after the
treatment, not during.
I went to sleep very tired a little after 2:00 AM.
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1. Don and "Friend"
2. San Francisco Bay from the Top
of Mountain View Cemetary
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Monday, August 9
Don stayed in Oakland last night so he could get an early
start at WebMD today, but when he got to the office, he
discovered that all his accounts had been changed. Dr.
Remen told me by e-mail that all the DMK e-mail was bouncing.
I called DMK and, after being given one wrong address for
Don, was eventually given a new address that worked. However,
that merely means I can send him mail. He still can't read it,
nor can he access the Internet. He left, very frustrated, after
spending only about an hour at the office.
When he got home this evening, he talked about going back to
the office tomorrow. This seemed an impractical idea to me.
We were in bed when he brought it up, and I talked about
how difficult it would be to catch the right trains, but I
didn't press the issue. He fell asleep very quickly after that.
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Tuesday, August 10
At breakfast, Don mentioned his plan to go the office again.
I had hoped last night's talk had just been tired thinking,
but now I could see he meant to do it.
I said I didn't think it was a good idea. His radiation
therapy was scheduled for 4:15 this afternoon. The
treatment takes 20-30 minutes.
He'd take the Margaritte shuttle to the station,
then catch the next train north. Say he gets the five o'clock;
that gets him into The City around 6:00 PM. Another half an
hour on the buss gets him to the Presidio at 6:30. The
next train back down the penninsula leaves at 8:00, and then
there isn't another train until 10:00 PM, and it's the last train
of the night.
When I laid this all out for him, he said, "So, you don't think
it's a good idea?"
"No," I said, "not on days when your appointment is so late in
the day. Maybe Wednesday would be better, when your appointment
is at three o'clock.
Then you could actually get some work done before
you'd have to start back."
He accepted this, and that evening, we talked about it again.
I mentioned that, if he wished, he could go from work to
his apartment in Oakland. That way, he could stay at work
longer without worrying about catching the last train.
"Yeah," he said, "but, 'empty little room,'"
quoting his description of his apartment when I'm not there.
"I realize it's important to you to work, and to touch bases
with you stuff in Oakland."
"Maybe I have too much stuff in Oakland," he said.
Then he told me about his "adventures" riding the bus today. First,
he said he got on the Margaritte, and instead of taking him
directly to the train station, it went "all over Stanford and
stopped at the California Avenue train station first."
"That's because you got it on the wrong side of the street,"
I said. "Next time, go across the street and wait at the stop
there. Or ask the driver if he's heading towards the University
Avenue train station."
"I'm getting good at asking directions," he said.
"When I got the 300 bus today, I asked the driver if he
was going down El Camino. He said, 'How the hell else am I going
to get to San Jose?'"
"That was rather rude."
"So I put on my best 'hang dog' look and said I wasn't from
around here and didn't know if that was the route he took,
so he said, 'Well, I'm not going to fly there.'"
"I think the VTA should hear about this," I said, getting
mildly steamed.
Don seemed to want to change the subject.
"What's your vision for the weekend?" he asked.
I told him that I wanted to stay at home, since I'd spent the
past two weekends away. He said Annie had invited him to
a poetry reading in The City Saturday evening.
"I want you to have the life that would make you most happy,"
I said. "It's okay with me if we spend a day or two apart."
He got a pained look on his face.
"You're what makes me happy," he said.
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Wednesday, August 11
This morning, I called Don, who was in the living room, from
the bedroom, using his cell phone. "This is your cell phone
calling," I said, "reminding you to take me with you when you
leave today."
He laughed and told the phone not to worry. He has decided
to go to his radiation appointment, then take the train to
The City, then bus to WebMD, and try to get some work done.
He's to use the cell phone to contact me in case anything
goes wrong or he gets lost.
Before we left the house, I asked him where the cell phone was.
It took him several minutes to find it, but it was in his stuff.
We moved it to a side pocket on his backpack so he would be
able to find it more quickly next time. If he doesn't answer it
within four rings, it routes the message to a voice mailbox and he
doesn't know how to retrieve it from there yet.
Brad, Mark, and I went to Linux World to see what was happening
in the world of free operating systems. When we got back
to the office
around 1:45 PM, there were two calls from Don. He was on the
Stanford campus, but his phone was dead. He said it had
apparently discharged. Since it had a full charge this morning,
I doubted that had happened, but since I wasn't here when he
called, there wasn't any advice I could give him. He didn't
leave a number where he could be reached. When I tried to call
him on the cell phone, all I got was an automated voice
that said, "I'm sorry, but the person you have called has a
voice mail box that has not been set up yet. Good-bye."
I took this afternoon to call Dr. Prados's office and Dr.
Forrester. I was able to talk directly to Jane Rabbit at
Dr. Prados's office, and Dr. Forrester eventually called me
back, so I was able to speak directly to her as well.
With Jane, I discussed how I thought Don was doing. Though
Don has been leaving her messages, I overheard him leave one
the other day and I know it was incomplete. He did not mention
the pimply rash on his chest, and we had been warned to look
for signs of a rash as an indication of Dilantin interacting
with the radiation. So I told her about this. She said to
make sure Don brought it to the attention of the radiation
oncologist. Then I asked her about the Thalidomide. She said
that the usual protocol was to up the dossage to 300 mg (six
capsules) after the second week of radiation.
The way she phrased this struck me as a little odd and somewhat
disturbing. She said, "Well, the usual protocol is to increase
the dose to 300 mg the second week, but we're doing the
Thalidomide mostly because Don asked for it." Does that mean
there's no real science or medical effect behind what we're doing?
If so, why are we doing it? If following the protocol is optional,
what good is the trial?
The only answers I could think of to these questions was that
Don wasn't really part of the trial at all. They had given him
the Thalidomide presecription on a compassionate basis. In other
words, there was no medicine here, just psychology. They were
treating him nicely because he was going to die no matter what
they did.
I also spoke directly with Dr. Forrester. She told me that Don
calls her "frequently," and that he seems to be in good spirits.
She said she thought he was in even better spirits when he was
on the steroid. She indicated that it might be a good idea to
put him back on Decadron if he starts feeling depressed or fatigued.
Again, I had to wonder why this medication was being suggested.
Was it just to elevate his mood? To what end?
I couldn't keep these thoughts from running around in my head.
They may have prompted a dream I had that night. I was a
high school teacher once again, married to Sara again. I spent
the weekend busily painting the set for a play. Sara was being
irritating, but for the most part, I was ignoring her. On
Monday, I was driving her in a school bus to some destination.
We stopped by the house of a fellow speech teacher from a
nearby school. "We missed you at the District Tournament,"
she said. It was only then that I realized that the weekend
I had spent painting the set was the weekend my team was supposed
to be competing in the District Tournament. Now, because I had
failed to take them, they would not be able to compete in the
Sectional and State finals. The entire year's effort would be
wasted, lost, and it was all my fault.
The parallel to Don is obvious. What if we're just wasting time?
What if I'm just distracting myself with what I can do, while
what really needs to be done slips through my fingers?
I picked Don up at the train depot at 9:09 PM. He had gotten
to WebMD by around 5:15, but his e-mail and web access accounts
still weren't active, so he still didn't get much work done.
However, he was able to hand in something he had been working
on at home. He also spoke to his immediate supervisor about
the problems with his account. He heard her tell Chris to see
to it that his accounts were activated.
"Chris said they would have to wait until someone else came out
from Atlanta," he said. "Apparently, they're on a rotating schedule."
"That's a crazy way to manage a system," I said. "Can it really
be efficient to fly people across the country on a rotating
basis? Still, I guess the best way to learn a system is to
fix it yourself."
"I knew I should have suspected
something when I came back and found out my password had been
changed to 'temp,'" he said.
When we got home, I tested the cell phone. It didn't seem to be
charged. I took the battery off and looked at it, then put
it back on. Now, the phone worked. Could the battery have
come loose that easily? I put both the phone and the back-up
battery in the charger. Tomorrow, I'll have Don carry both with
him when he goes out. If one fails, the back-up should still
be good.
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Thursday, August 12
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Friday, August 13
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Saturday, August 14
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