Sunday, January 2
We spent the afternoon in San Francisco, taking a nice long
walk with Jim from his house, down the Vulcan Steps, and
through the Castro. On our way back to his house, Jim showed
Don how to recognize the N Judah stop he would have to get off
on when he comes to the reunion party tomorrow night.
Then Don and I headed for Mill Valley. We stopped off at a
Sloat Garden Center, where Don intended to buy a bag of chicken
manure. I persuaded him that I would be unhappy hauling chicken
manure in my car for the next 18 hours, and that I would probably
find it particularly offensive on the drive back to Mountain View.
He relented, and I promised we'd go get some when we got back
home.
We spent a few minutes at The Depot Bookstore, where I drooled
over a book on Stickney designs and architecture. Then we
met Chris for dinner.
We expected dinner to be just the three of us, but Chris broght
along four of his friends. To my surprise, Dave Lammel was
among them. Dave and I went on a rafting trip through the
Grand Canyon three and a half years ago. It was great to
catch up with him, and to meet his significant other, David.
The other couple was an oncologist and his date. Don spent
much of the dinner talking to him, exchanging information about
new treatments. The oncologist, whose name I believe is Ob,
said that BCNU is not as scarey as its reputation. In his
clinical experience, he has never seen the lung complication
that seems so dire.
It was the most pleasant, sociable evening I think we've had
in a long time. It's great to be among friends.
|
|
Monday, January 3
We awoke with the sun streaming (or should I say "screaming"?) in the
windows. We lounged until around 9:00 AM, then dressed and were soon on
our way. The convenience of being able to stay overnight in Mill Valley
cannot be overestimated. If we had had to leave from Mountain View at
9:00 AM, we would have had to get up much earlier.
We had breakfast at the Half Day Cafe. Don recalled the time he thought
he had left his wallet here. He remembered how panicked he was, and how
he thought it was an indictment of his abilities, proof of his
incompetence. "Now," he said, "phhht!" and he waved his hand dismissively.
We were on time (even a little early) for our appointment with Dr.
Angelone, which pleased him. He started off discussing the meaning of the
field cut test results, which Don had photocopied and mailed to him. Don
mentioned that it was a bit disturbing to see it that it was so dense.
Dr. Angelone was more encouraging.
"I don't believe it when doctors say the field cut won't recover," he
said. "That's doctors playing God." He seemed to think this way about
Don's recovery and cognition in general. "If I tell you you will have
memory problems, then every little thing you forget, you will say, 'Oh,
that's my memory problem,' and you will convince yourself. But we forget
things all the time. And to tell someone they will not recover from a
certain cancer, that's playing God. We don't really know what will
happen."
He illustrated this with the story of his aunt, who was diagnosed with
ovarian cancer. "They said she had three to six months to live. It was a
different time and a different culture then, so the family decided not to
tell her about it. She was thirty-one years old at the time. And do you
know how old she was when she died? She was eighty-four. So you see
these things are not definite. We pretend that they are, but we don't
really know."
Speaking about the field cut, he demonstrated that the pattern shown on
the test results is what he would expect at this point (the field cut
pattern labeled "optic nerve injury" in the illustration below). "The surgeons
have cut some of the fibres," he said. But he expected Don to recover
the lower left quadrant again because the damage was mostly to the
temporal lobe. (The "temporal lobe injury" pattern is what Don was
presenting before the tumor resection.)
He encouraged Don to get the training needed to reclaim his driver's
license. "The hemorrhage is now past," he said, "and the cancer is
something that may or may not happen. It is time to get on with your
life. How are you tolerating the Temodar?"
"It's remarkable," Don said. "I haven't had any side effects."
"You had a little nausea," I corrected.
"Yeah, but that Zofran - that's a miracle drug!"
"When was your last round?" Angelone asked.
"I haven't taken it in weeks," Don said.
"You took the final dose of Round II last Wednesday," I said.
"How do you think he's doing?" Angelone asked me.
"I think he's doing great," I said. "There are a few things, like
putting on his clothes backwards or inside-out, but he pretty much
takes care of himself."
Angelone nodded.
"These tumors are very aggressive and fast-growing,"
he said, "and yet there has
been no change in Don's behavior or cognitive abilities since the surgery
in July. That is very encouraging.
Putting clothes on backwards and saying 'weeks ago' when it was actually
last Wednesday, these are things I would expect with
a temporal lobe injury. But you are very functional."
Dr. Angelone agreed to begin the QEEG with the next appointment. He was
unable to commit to this Wednesday, but was able to commit to all the
Mondays this month.
Don was tremendously cheered by Angelone's confidence and his message of
"getting on with your life." On the way home, he said he was feeling
confident he could do it.
Our original plan was for me to drop Don in The City, where he would
hang out in the Haight until the reunion party this evening at Jim's.
But he decided he didn't want to spend five hours by himself, so he
came back home to Mountain View with me. I dropped him at home and
went to the office. He would take the 4:18 train back to San Francisco,
then the N Judah to Deboce Park, which was a short walk from Jim's
house. I told him to call me when he got to The City so I'd know he'd
arrived all right.
It didn't go quite as planned. Don got on the train just fine, but just
as he arrived at the station, they announced a shuttle bus to the N
Judah. Apparently, the streetcar wasn't running to the depot, so he
had to board the bus immediately. He told me later that they whisked
the passengers away so quickly he didn't have time to call, and then
they bundled them all into the underground station on Market Street,
which is where they actually boarded the streetcar.
Of course, Don could have waited above ground and called me from there,
but he decided to get right on board the train since it was getting
close six o'clock and the party at Jim's was at 6:30.
Once underground, he couldn't call me, so it wasn't until the N Judah
emerged at Duboce and Church that he called. When he told me where he
was, I said, "You'd better look sharp. Duboce Park is the second
stop after you come above ground."
"Yes, in fact, here it is! Gotta go!" and he hung up.
About ten minutes later, he called me again. "Well, I'm slouching
up Waller. I had to ask people which way it was, but I was only a
block or two off. I looked around and saw a sign that said Broderick
and Frederick, so I knew I must be close."
I should have caught on then, but I didn't. Instead, I asked him to
read the house numbers on the houses he was passing. He was looking
for 658. The numbers he told me were in the 400's, but the numbers
were descending. He turned around and headed in the other direction
and we said good-bye.
He called again in a few minutes to say he was on the 600 block. As
we talked, he noticed that he was past the 650's, so he hung up again.
About fifteen minutes later, at about ten minutes to 7:00, he called
again.
"Well, I'm at Buena Vista, and the numbers are 1600, not 600. I
didn't see the '1' in front of them."
Suddenly, what he said about Broderick and Frederick clicked. "You've
gone up the hill, toward Buena Vista Park. You're on the wrong side
of Divisidero. You have to turn around, walk back down the hill,
and cross Divisidero again. Jim's house is about two blocks from
Divis."
He had gone ten blocks out of his way. He told me he had tried calling
Jim, but Don's cell phone (which Jim gave him and is paying for) blocks
its caller ID and Jim's phone doesn't accept calls from phones that block
their caller ID. God damn the telephone company to hell. The only reason
they instituted this blocking "feature" was to pressure people who didn't
want their caller-ID broadcast to the world into buying the "service."
I had Don give me Jim's number. I knew Glyphic didn't block its caller
ID so I could get through. I called Jim and told him why Don was late.
He was very relieved to hear from me and said he would go outside and
walk up the street until he met Don coming down. I was relieved to hear
it.
Don called me once he got to Jim's. Stewart, one of the other guys at the
party, would give him a ride to the train depot for the return trip. I
was much relieved to hear it.
Don arrived back in Mountain View without incident (though he did
discover one 'dangerous" thing: he can easily fall asleep in the coach
seat). He was a little upset by his getting lost in The City. It was
dark and it was an unfamiliar neighborhood, but he was disappointed by
his not seeing the 1's at the beginning of the street addresses. "If
you think you're seeing the number you expect to see, you don't think
there's anything wrong," he said.
Dr. Angelone called just before Don got home. He was able to clear his
calendar for this Wednesday, so Don can begin his therapy the day after
tomorrow.
|
|
Tuesday, January 4
|
|
Wednesday, January 5
When I picked Don up at the depot, he said he was puzzled
by Sara's reaction to his taking the bus on the return trip.
"It was like she was angry with me for taking the bus," he
said. "She said she had to get to work, that she had to put in
a certain number of hours."
"But taking you to Angelone's didn't cut into her work hours,
did it?" I said. "I mean, any more than it would have anyway.
Did she wait for you at Angelone's and then find out you
were going to take the bus?"
"No, she dropped me off an left right away."
"Maybe she was disappointed she wouldn't get to spend time with
you on the way back."
"I didn't want to wait around Santa Sabina for four hours."
I shrugged. "Well, I wasn't there, so I can't say what was going
on."
"It was weird," he said.
|
|
Thursday, January 6
Don and I have been skirting around the issue of domestic
partnership for a couple of weeks. Today, we finally did
something about it. I had printed out a State of California
Declaration of Domestic Partnership yesterday, and asked Don
if he'd like to sign it today. He said, "yes."
So this morning, we went down to City Hall to find a notary
to seal the document before we send if off to the Secretary of
State. To our surprise, we discovered there was no notary
at City Hall. "The closest one is about two blocks down
Castro, at a real estate office," the woman at the information
desk told us.
So we ended up "sanctifying" our union at a real estate office.
I guess that's about the closest thing to a church in Silicon
Valley.
The notary had never put his seal on a domestic partnership
declaration before. "Is that from that new law?" he asked.
"Yes," I said. "The law went into effect January 1st."
"It's good to see what one looks like," he said, eyeing us up
and down.
Don also signed and had notorized a form that declared me as his
attorney-in-fact for financial matters. As the likelihood of
his exercising his stock options sometime soon increases, he's
been relying on me to make sure all the paperwork is in place
for a same-day trade. Having his financial power-of-attorney
will make doing all that much easier.
Later that morning, we went to the Social Security office in
Sunnyvale, where we were interviewed for Don's Social Security
Disability Insurance claim. Don was interviewed by Carla Dow.
When she asked him, "Are you married?" he was able to reply in
all formal honesty, "Domestic partnership."
Carla was very thorough and effecient, and within an hour she
was able to tell us what she thought Don's monthly benefit
would be.
She said that the approval process normally takes six to nine
months. "But they'll expidite it in your case, since you're
terminal," she said.
Don grimaced.
"How long will it take expidited?" I asked.
"Sixty to ninety days," she said. She also explained that the
benefit, if approved, would back-date to December. "It starts
five months after the diagnosis."
I said nothing, but found the arithmetic typically Brazillian.
Don qualifies for SSDI because, according to their definitions,
he will be dead within a year of his diagnosis, and being dead
is a serious disability. But they don't start paying until
five months into your check-out year, and it's going to take
them two to three months after applying for him to even start
getting the money.
But that's only because Don's case is "expidited." If I hadn't
put "brain cancer - terminal" on his form, his case could
take six to nine months, or roughly three months longer
than they expect him to live. So, dying has its advantages.
Besides, as I told Don when I put "terminal" on his application,
"You don't have to believe everything you tell the government."
|
|
Friday, January 7
|
|
Saturday, January 8
I had to go to Traffic School most of the day, but Don was entertained by
Roger, who came down to go bike riding with him. By coincidence, one of the
other people at Traffic School was a rehabilitation counselor for people
wanting to regain their driver's licenses. I spoke to her at the end of the
lunch break.
"My partner had a hemorrhage in December of 1998, and it left him
with a severe left field cut," I told her.
"I'm so sorry," she said.
"He's done remarkably well," I said. "In fact, he's out riding his
bicycle today with a friend. He feels he's ready for rehabilitation
training to regain his driver's license. Do you know where he can
go to get evaluated and trained?"
"Where does he live?"
"Mountain View."
"I work in the East Bay," she said, "but you can't do better than
Santa Clara Valley Rehabilitation Center in San Jose."
"Is that the place at 751 Bascom?"
"Yes."
"Good. You're the second person to recommend it. That's where
we'll go."
"Is he your business partner?"
"No, domestic partner."
"It's good to hear he's doing well."
"It's pretty remarkable," I said, practically glowing. "A year ago,
they thought he was dead. And today, he's riding his bike."
"That's great to hear."
When I got back, Don was exhilirated by the ride he and Roger took. It was
a single-track trail out near Page Mill Road and Skyline. Don had only one
spill, "More of a dismount, really," he said. "But the ride was wonderful!
It was just like old times!"
|
|