Sunday, May 7
I arrive at the recording session early because they have promised bagels
for the early arrivers. But there aren't any bagels, and in fact the
bagels never come. I am very annoyed.
Then Buddy announces that Nigra Sum will be recorded in the morning
session, not in the afternoon as I had assumed based on the hand-out at
rehearsal. I am crushed. I told Don he could stay at home this morning,
but that I wanted him there in the afternoon when we record Nigra Sum.
Since the chorus isn't doing Beautiful Dreamer - which had been my first
choice - I am going to dedicate the Nigra Sum track to him (by donating
the recording cost). Noon comes and goes and we still don't have a decent
recording of it, so Buddy tells us all to go to lunch and we'll give it
another try afterwards. I return to Mountain View to pick up Don, but am
dismayed when he tells me that he has not eaten lunch. I had told him
that there was no food near the recording studio and he would have to eat
before we left, but he had only had some fruit and yogurt. Hoping there
might be some leftover wraps when we got back (I had ordered two: one
chicken for me and one vegetarian in case Don had wanted to stay at the
studio the entire day), I bundled him and the overnight stuff into the
car.
When we got back to the studio, I could hear the chorus singing Nigra Sum.
There was no food left in the green room (no real surprise there, but it
means people ate food they didn't order or pay for).
This turned out to be the final recording of Nigra Sum. How ironic: the
one song on the album dedicated to Don will probably be the one I'm not
on.
On the plus side, I asked the Crazy 8 ball in the lounge if we would have
good news tomorrow. It said, "Yes."
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Monday, May 8
Don and I stayed overnight at Chauncey and Gerri's. In the MRI
room, I held Don's toes while the machine when "bang! bang! rata-rata-
rata-rat! brr! bang!" Afterwards, we take the duplicate MRI to the car and get
a cookie and a latte for Don and a cookie and a hot chocolate for Lou. I
notice Don's hand tremble as he hands me the hot chocolate. A new symptom
or just nerves?
In Prados's waiting room, we both read. At one point, I look up and say,
"I wonder what it says about our relationship that I'm here reading the
current issue of an interior decorating magazine and you're reading The
Tibetan Book of Living and Dying."
Don laughed. "It's perfect," he said.
We also chortled over the following quote in the "Antennae" column of
The World of Interiors ("what's up in the air this month"):
'I'm a bit of a stickler for detail,' says Alison Reid, talking about the
intricate trimmings she makes by hand. 'The more pernickety they are, the
better.'
This cracks Don up. "She needs to get in touch with her people about
follow-through," he says.
Margaretta took Don's status and asked about drug side effects. I
prompted Don to tell her the story of falling down when running after the
bus and to mention the bowel problems, which he does, though he says it
has happened only once (I tell her it has actually happened twice).
Thinking we may have to face a decision soon, I ask if temozolomide is a
nitrosoreate. She tells me it isn't. "So, he hasn't had any of that
class of drug," I say. She agrees he hasn't. I also point out he hasn't
done anything in the platinum class of drugs. Don menions the copper
chelating. Margaretta says that Prados would have to buy in on it first.
Dr. Prados came in and escorted us to another room where he said we could
see the films better. When we settled into chairs, he looked at Don and
said, "Tell me you're doing better."
"I'm doing better," Don said.
Prados gave me a sideways smile, as if to say, What is this, an Abbot and
Costello routine? Then he turned back to Don.
Prados: Tell me why you're doing better.
Don: Decadron! Now I have energy and appetite in abudnance. I've always
been a coffee hound, so I've always liked that "edge" feeling.
P: That must be some coffee.
D: Peet's.
P: Well, the scans are very good.
D: Excellent. Who came up with this protocol?
P: It's just something we came up with here, that's out of our own little
heads.
D: What led you to think that tamoxifen and etoposide would be good?
P: We knew that tamoxifen had two effects. One, independent of its anti-
tumor effect...
D: It has an anti-tumor effect? I thought it was hormonal.
P: It is hormonal when you use it in low dosages, such as with breast
cancer. But when you up it to the industrial-strength doses we're giving
you, it has a different effect by a whole different mechanism. It blocks
some signalling. It also has another effect [besides being an anti-tumor
agent] in that it may help VP-16 [etoposide] to enter cells. It keeps
them from spitting it out.
D: Well, thank you for recommending it.
P: (Wryly) You're welcome.
D: How long will I be on this protocol?
P: As long as it's working, for up to a year. Your headaches...?
D: Gone.
P: Is the thrush okay?
D: Yes.
P: Any nausea while on VP-16?
D: No.
Lou: Yes. You had it once. But the compozine takes care of it.
P: Are you dizzy, ringing in your ears, unbalanced?
D: Well, I do seem to have balance problems, but it's hard to know what's
causing it. My balance hasn't been good since the hemorrhage. I fell
catching a bus and it scared me.
P: Do you think it's worse in the last six weeks?
D: Yes, I do. Do you think it's the tamoxifen?
P: That's what I'm trying to sort out.
D: If it's bringing about tumor shrinkage, I can live with that.
Literally.
Prodos then conducted the usual physical examination. He noticed some
hearing loss on the left side. Don called his attention to twitching in
his left foot and trembling in his left hand. Prados said he had noticed
that, too. When Don did the tandem (heel-to-toe) walk, he wobbled quite a
bit. "My balance is iffy," he said, "quite iffy."
Dr. Prados then reviewed the scans with us. He was obviously very cheered
by the results and showed us nearly every film, comparing the March images
with today's. "They are really remarkable," he kept saying, "dramatic.
Even better than your response to temozolomide."
Don thanked him again for getting him on it. "I really admire your
expertise," he said.
"If you really want to thank me, just continue getting better."
He then went out to get Margeretta to set up the next round of chemo and
the next MRI. As he left, Prados said, "You have really made my day."
Left to ourselves, we quietly celebrated.
"I had a feeling it was good," Don said. "Of course, that could just have
been the steroids."
"Congratulations, wonder boy," I said. "You've done it again."
He smiled at me and took my hand. "Your love is healing me," he said.
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Tuesday, May 9
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Wednesday, May 10
I'm on the phone several times this morning with Jessica
and Don. Don wanted to meet up with Jessica and have her
come down to Mountain View for dinner with us, but when he
left on the train this morning she had not yet called, so
he thought the rendezvous was off. Instead, Jessica said
she had tried calling the night before and hadn't gotten
through (that's odd; Don was home the whole time). She
left a message on our machine this morning, but it was
after 8:00 AM and we had already left to drop Don off at
the train depot.
After much back-and-forthing, Don finally connected with
Jessica and they agreed that she would pick him up after
work.
He called me around 4:30 to say he was waiting for Jessica
outside a coffe shop in Noe Valley. It was cold and windy.
I told him to wait inside the shop.
"She's expecting to see me outside on the bus bench,"
he said. "I'm afraid she'll drive by and not see me and
just leave me here."
"I'll call her and tell her you're inside," I told him.
"It's too cold for you to be waiting outside."
"I should have just gone to the train depot," he said.
"Then I could be home with you by now."
"But this way you'll get to visit with Jessica for an
hour as you drive down," I said.
"True. But it's so cold."
"Go inside. I'll call Jess."
I called Jessica and left a message on her voice mail.
By 5:30, Don was on the phone again. He had just gotten
into Jessica's car. I don't know if he waited outside
or inside the cafe.
An hour later, I met them both at Global Village Cafe.
We had a delicious dinner. Jessica said that she thought
Kent worked too hard and under circumstances that seemed
destined for failure. Don and I both expressed concern
for Kent and for the two of them.
Afterwards, Don went to Red Rock to pick up his bucket of
coffee grounds and Jessica and I headed for our separate
cars. I told Jess how much I appreciated her coming down
to visit Don. I feel a sense of urgency, almost of
foreboding, that Don's friends get to see him now while
they can. Perhaps I regard the good news on Monday as
merely a reprieve, a second chance.
We have, I think, a limited window of
grace. I want all of us to make the most of it.
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Thursday, May 11
This evening, Don and I went to hear a lecture by Swami
Sachitananda, the guru of the ashram where Don lived in
Virginia. I was interested in hearing him speak. After
all, this was the man who gave Don the name Vivekan.
The swami had many useful things to say, most
of them typical of the Hindu/Yoga perspective on life:
When you were carried by your mother, people would point to her
belly and ask, "What is it?" So you are an "it." Then
when you die, what do they say? "Take it away." So
you come into the world as an it and you leave the world as an
it. That's it.
You cannot pursue happiness. It is like pursuing your
own shadow. But if you turn around, you will find that
your shadow pursues you. Why? Because you have turned
toward the light.
When a man says to his wife, "I love you," what is he saying?
If he says, "I love you," and he expects her to say back
to him, "I love you, too," then his love is not given freely.
If he says "I love you" in exchange for "I love you, too,"
that is not love. That is business: I give something, I
get something.
When you are angry, you point your finger at the person
and you say, "He has made me angry." Well, look at this hand.
Look at the hand that is pointing and saying, "He has
made me angry." There is one finger pointing at the man,
but there are three fingers pointing back at you. And
there is one, the thumb, a witness.
He also said some utter nonsense. He said, "A dog is happy,
is it not? It doesn't say, 'If only I were a cat, I would
be happy.' And a male dog doesn't say, 'I am tired of being
a male dog. I want to be a female dog.'"
This is nothing more that bigotry disguised as ignorance.
Transgendered people aren't "tired" of their sex. They are
not simply seeking a new thrill or some entertainment. It
is a profound and deep-seated need to be who they are. They
are not infants looking for a new treat; they are adults
trying to stay alive.
The swami also said that there is nothing that is good or bad
in itself but thinking makes it so. Someone in the audience
called out, "What about cancer?" He replied, "A cancer is
nothing more than some flaw in yourself. Look in yourself
to see what is causing the cancer."
This is balderdash. Old-fashioned balderdash at that.
Afterwards, Don and I went up on stage to meet the swami.
There was one person in front of us, and he lay down on the
ground before the guru, who touched him on the head. Don
later told me this was a traditional act of obesience called
a pranam.
When Don approached, he said a few words, but the swami
couldn't hear him. Don leaned closer. "This is my partner,
Lou," he said, and he clasped my hand in his and held our
hands out to him. The swami held our hands in his. "Bless
you," he said.
The woman on stage behind the swami began looking alarmed.
"Please," she announced to the crowd, "no personal messages.
There isn't time for a private conversation with the swami."
Don either didn't hear her or wasn't able to process it. He
was focused on the guru who had been such an important part
of his life. "I want you to pray for me," he started to say.
"Please, just the pranam," the woman said loudly, looking at
Don. "There are too many people."
Don still had his eyes on the swami. "Please..."
The guru got an impatient look in his eyes and indicated the
line behind us. I turned around. It had grown quite large.
"That is all," he said, and waved his hand. "Think of the
others."
"Please pray for me," Don said. Satchitananda looked past him
at the next person in line. The woman was coming forward
to pull Don away. I tugged on his hand and gently led him off
the stage. As I looked back, the next disciple was
lying down before the holy man.
On the way home, I said I could see that Swami Satchitananda
could have quite a cutting edge to him.
"Yes," Don said. "At times he's just a grouchy old man."
"I don't think he recognized you," I said.
"No," Don said, "I don't think he did."
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Friday, May 12
I return from work to discover the planters have been filled with
nursery mix and the irrigation system has been raised to the new
level of the dirt. I am elated! Tomorrow, Don and I will be
able to plant our garden.
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Saturday, May 13
It's a busy day. We get up early enough to go to FrontRunners,
and even though it's a cool morning, there are around a hundred
people there.
Don and I had walked the three-mile route around the golf course
and airport before, back in January, but I thought we'd do less
this time, walking only as far as the the first mile marker
at the end of the levy. I thought that would be
enough to give Don some good exercise without tiring him out.
It actually proved to be too much. We turned around well
short of the first mile marker. Don wasn't walking so much
as he was doing a series of arrested falls. On the way
back to the car, we stopped three times because I was afraid
he would pitch forward and fall off the path. He would lean
against me, holding on. The last time
we were only about 100 feet from the car. I noticed his
knees were still flexed even after he let go of me. "Can
you straighten up?" I asked. "Can you stand up straight?"
He tried, but his legs wouldn't straighten out. "Apparently
not," he said.
We made it back to the car, but when he got to the passenger
side door, he couldn't stop. He passed it by a good ten feet,
trying to get his balance and bring his "forward falling" to
a stop.
We were both concerned about this and decided we would ask
Dr. Peterson about it when we see her next Tuesday.
We went on to Sofia's to have coffee and sweets for breakfast
(I had hot chocolate, of course). Since Sofia's is right
next door to the place where we got the orthopedic pillow,
we stopped in and got a second one. Now we each have one we
can use while watching TV in bed.
Don seemed to revive quite quickly over coffee, so we
continued with our plan to buy the seedlings for our garden.
We went to Orchard Supply and got tomatoes, eggplant, peppers,
zucchini, chives, sage, rosemary, and strawberry plants. We
took these home, then headed out for Woolworth Nursery, where
we bought a large, low round pot and a bunch of lobelia, some
potting soil, a plant mister, and an assemble-it-yourself
redwood potting table.
When we got home, we divided up the jobs: Don took over the
round pot and the lobelia, and I started planting the seedlings
in the raised beds. He finished before I did, so he then went
into the kitchen and made "Eggs Ceci," which is sauteed
vegetables covered with an egg-and-milk mixture that then
cooks slowly in a covered skillet so the eggs come out custardy
with the veggies embedded in them. He did a wonderful job
and we both enjoyed a satisfying lunch.
After lunch, I started assembling the potting table. All the
pieces were there and all the screws, but the directions, though
thorough, were incomplete. There were several "got-chas" on
the way, and I know I put at least one set of legs on backwards,
with the counter-sinks for the screws on the inside, not the
outside where they would have done some good.
About two-thirds of the way through assembling the table,
Don called out from the kitchen, "Lou! The dishwasher is
leaking water all over the kitchen floor!"
I poked my head in the back door. There was a fair amount
of water all over the kitchen floor. I looked at the faucet.
"There's your problem," I said. "The hose has been disconnected
and the faucet has been turned off. Did you maybe detach the
hose in order to get a drink of water?"
Don got a look of enlightenment. "Yes, I did!" he said.
"That's what did it, then," I said. Apparently, the dishwasher
had filled with water and run through its first wash cycle.
It pauses before it begins the rinse cycle. At that time,
Don must have entered the kitchen and thought the dishwasher
was done. He detached the hose, used the faucet, then left
the kitchen. The dishwasher, not knowing of course that it
was no longer attached to the sink, then went into its rinse
cycle and started emptying itself through the hose, resulting
in our little flood.
I was back outside in the patio wrestling with the table for
a few minutes. The door to the kitchen was open, but I didn't
hear anything from Don or see any signs of him mopping up the
water. So I called out to him, "Are you going to take care
of that water on the floor?"
He came to the door. He was rather angry. "Of course I'm
going to take care of it!" he said. "I'm not just going to
leave it lying there."
I was surprisingly calm about this accusation. "I just wanted
to make sure what your intention was," I said. "It's not
always clear to me what your intention is, and sometimes even
when it's clear, you don't always stay focused on it."
He calmed down. "That's true," he said.
"I just wanted to be sure," I said.
"Yes, I'll clean it up," he said and asked me where the mop was.
I finished the potting table and Don said he'd finished
cleaning up the kitchen. He said the dishwasher discharge
actually made a rather good floor cleaner. We decided to
celebrate by going to a movie.
The movie was Battlefield Earth and it was truly one
of the stupidest films I've ever seen, despite attractive stars
and decent special effects. The villains were just too dumb
to be believable. Don said he found it difficult to follow.
"An action adventure film isn't very interesting if you can't
follow the action," he said.
He asked me during the final
scene, "So, I thought John Travolta was in this movie."
I pointed out that he was playing the cheif villain.
When we got home, I took a shower and Don went on-line to
"sling some e-mails." When I got out of the shower, I went
to make myself a piece of toast. There was still water
puddled on the floor. Apparently, Don had not thought to
mop under the dishwasher, so when it finished its cycle
and he put it away, a whole new pool of water was revealed.
Some had also seeped under the refridgerator and now that
the larger pools were mopped up it was seeping out again.
I called his attention to this. It took him about ten minutes
to finish the e-mail he was writing, then the two of us got
down on our hands and knees and sopped up the remaining water
with cleaning rags. We found these worked much better than
the sponge mop, which seemed merely to push the water from
one place to another.
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