Sunday, August 1
Don woke with a slight headache around 10:30 AM. I had gotten
up around 10:00 AM and started some Irish oatmeal.
He took a Vicodan and it seemed to clear it up.
Around 11:00, Don felt he wanted to eat, but we stayed
in bed, listening to what I thought was
an amusing skit on Prairie Home
Companion about cut-rate brain surgery.
However, my conversation with Sara has shaken my
confidence in my ability to predict what will and will not be
tolerated by someone who has recently undergone brain surgery.
Don assured me that he did, indeed, find it funny.
We sat down to breakfast around 11:30.
Don started by taking several of the encapsulated herbs
Dr. Broffman had sent him: Siberian ginseng and don shen
and other stuff I cannot remember.
Then he started the Irish oatmeal porridge.
After a few bites, he put his spoon down and looked
distressed. I guessed he was feeling a wave of nausea
and reached out and took his hand.
"Don't eat it if you feel nauseous," I said. We held that
pose for a while. Then I said, "If you'd like,
I have some nice, plain crackers."
He shook his head.
He held very still for a while, holding my hand tightly. Two
waves seemed to pass through him, he belched, then he seemed
to relax. He cautiously took another spoonful. It seemed to
go down well. Bit by bit, he finished the porridge. Towards
the end of the meal, he said he was actually enjoying the
chewiness of the grain.
The morning headaches and the morning nausea are so far the only
side-effects he's mentioned. They alarm him and we've talked
about them. We both think they must be due to the Thalidomide,
since they've occured both mornings after he's taken the drug.
It seems unlikely that they could be due to the radiation, since
he's had only one dose.
When I came home from the afternoon matinee, I mentioned that
there would be a cast party in Redwood City. At first, Don
said, "Just go and have fun." But when I mentioned that I
wouldn't be leaving for an hour, he decided to change clothes
and go along with me. I'm glad he did.
The party was oddly reminiscent of the one after the Christmas
concert. But then, I was consciously spending time away from
Don to schmooze with the other chorus members. This time, he
was pushing me away, telling me to "go schmooze."
On our way back home, I went by Stanford Hospital and showed
him where he could catch the 35 Bus. Then, as we went down
San Antonio, I drove around the perimeter of the shopping
mall until I found the stop that listed the 50 Bus and I
pointed it out to him. As we pulled into Villa Street, I
showed him the bus stop for the 50 Bus right outside my house.
We agreed that tomorrow, he would join me for lunch, then I
would drop him at Stanford, he would get his treatment and
I would head back to work. Then he would return home using
the busses and transfer points we'd just toured.
Later in bed that night, I wanted to squeeze him hard. Instead,
I cradled him tenderly. We talked about "collateral damage"
and the "elegant" structures in the brain.
"I don't know if it's 'elegant' or 'eloquent,'" I say. "I've
seen it spelled both ways."
"'Eloquent' would be language, wouldn't it?" he asks.
"Yes. Left temporal lobe stuff." I told him about Broca's
area and Wernicke's area. "But they didn't touch any of that.
That's all on the left. Your language centers are still intact.
Your recent poems prove that."
He was quiet for a while. Then he said softly, "Yikes."
"Obsessing about your right temporal lobe?"
"That. And cell necrosis. Scarey stuff."
"Yeah. I think anyone would agree it's real scarey stuff.
But I'm going to be here, no matter what. You can count on that.
You can count on my love."
"You can count on mine, too," he said.
"I will," I said. "I do."
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Monday, August 2
Don joined me at work so he and Brad and I could have lunch
together. He told me that he had spoken to Jane at Dr.
Prados's office about the headaches and nausea. He said she
told him it was probably due to swelling, not the Thalidomide.
"In a way, I'm glad," he said. "I don't want to be
afraid of this stuff. I want to feel good about taking it."
After lunch, I drove him to Stanford.
On the way to the
radiation appointment, I mentioned that his finding his way
back home by way of two previously untraveled bus lines would
be "an adventure, like an explorer."
He broke out laughing. "That all my life has been, lately:
exploring. Even a trip to the bathroom is an exploration!"
"Yes!" I said, getting into the spirit of things. "You never
know what you'll come across on your way back."
"Or if you'll come back!"
As we arrived at Stanford, I pointed out the bus
stop where he should wait for the 35 Bus. He seemed better
oriented today than he had on Friday, noting the "flower entrance"
to the hospital and its relationship to the parking structure.
I took some pictures of him in "LA-6," the radiation room where
he gets his treatments. When I said good-bye to him, I told him
to call me when he gets home. Muffled by the mask's webbing, he
told me he would. His voice sounded strained, like he was
struggling with some emotion. But that might have been the
effect of the mask. We had talked about this strategy several
times: my driving him to the hospital, then leaving him there
to find his way home by bus. Was I doing the right thing to
leave him now? He has said he wants to do these treatments
without interferring with my work. In the waiting room, he
even suggested I leave rather than wait until he was in the
treatment room. But I didn't want to leave him in the waiting
room by himself. That's where the worst anxieties always happen
for me: waiting. The treatment itself is less nerve-wracking.
But is this how he feels? The tone of his voice made me doubt
that what we had planned was such a good idea after all. But
as all this was racing through my head, the head technician
said to Don, "We're going to step out of the room now, and we're
going to take your friend with us." She gave me a significant
look.
"Gotta go now, sweetie," I said. "I love you."
I could barely make out "I love you, too" coming out of the
mask. He squeezed my hand for punctuation.
"Call me when you get home," I said. Then I left.
He did call me when he got home. It took him three hours.
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1. The Machine
2. The Mask
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Tuesday, August 3
We had an appointment with Dr. Berger, the neurosurgeon, for 10:30
AM this morning. We arrived on time, but while checking in, I heard
another patient saying they, too, had a 10:30 AM appointment.
We sat down and waited. And waited. Around 11:30, we went to see
if perhaps Dr. Lowenstein, who also has offices on this floor, was
in. We were told he would be at 1:00 PM. I didn't think we would
be here that long, but the longer we waited, the more likely it
seemed. After about an hour, I asked if Don's pathology report
was in his record. The receptionist said it was. I asked her to
make a copy of it for us, which she readily did. Having our own
copy of these reports has come in handy at least once.
Later, to pass the time, I mentioned some of the things I
remembered from Santa Rosa. One of the phrases Don kept repeating
in the first day or two was, "It's not all sex."
"'It's not all sex' implies that at least some if it
is sex," I said, "and some of it is something else. Waiting
around in doctor's offices, I guess. Waiting for lab results."
"But it is all sex, isn't it? It's all particles and collisions.
Two particles collide and produce little baby particles.
That's sex, " he said.
"I can just hear them, 'Oh, look at the spin on that muon!'"
"'And get a load of him. Now that's a strange attractor.'"
"What are the other properties of particles?"
"Electric charge, strangeness, color - but I think that's
just quarks."
"Color? Then there must be texture and pattern, too, just like fabric!"
"And drape! 'You look fabulous, dear, cloaked in photons.'"
We were finally shown to an examining room around noon,
where we were interviewed by Brigid,
the nurse replacing MaryLou, who is on vacation. She asked
Don how he was feeling:
Don: Some headaches, mostly in the morning.
Brigid: On a scale of 0-10, 10 being the worst, how does it rate?
D: A five.
B: What do you take for it?
D: I've taken Vicoden, but that seems like heavy artillery. Jane,
the nurse in Dr. Prados's office, suggested extra-strength Tylenol.
B: Extra-strength Tylenol is best.
D: What is Vicoden?
B: It's a substitute narcotic, but not a triplicate, like morphine is.
Lou: What's a triplicate?
B: To prescribe narcotics, doctors have to fill out a form in
triplicate.
L: Oh, so it's a description of the paperwork, not its chemistry.
B (to Don): Do you have any other morning issues?
D: Last night I slept propped up on a pillow and
I didn't wake up with a headache. But I abandoned it and rolled
off it in the night.
B: Try putting a blanket under the mattress to prop it up.
[I thought this was rather naive, since it assumed either that
he slept alone or that the person sharing the bed with him
wouldn't mind sleeping propped up as well.] Any other complaints?
D: Bright sunlight and high-pitched sounds, such as crinkling
plastic, are disturbing. When I have one of these headaches,
they're really piercing.
Brigid made no comment and didn't even seem to write this down. She
was called out of the room for a moment, and I reminded Don of the
nausea. When Brigid returned, she started in on another line of
questions:
B: Where in radiation therapy are you?
D: The first week. Started last Friday. (Don then tried to get the
conversation back to his side-effects.) I've suffered from waves
of nausea in the morning.
B: Does the headache accompany the nausea? Is it in the same day?
D: Yes, it's the same time: mornings.
B: What are your daily medications?
D: Dilantin, 300 mg at bedtime, and Thalidomide, 200 mg at bedtime.
B: Are you taking Decadron?
D: No.
B: Any change in your eating habits? Your weight? Your sensation
of taste?
D: They're all okay. Won't Thalidomide inhibit the growth of
blood vessels and inhibit healing from the surgery?
B: No. I wouldn't worry about that. How's your stamina and your
walking?
D: They're good.
B: So, headaches and sensitivity to noises are it.
D: Yes. Have you ever heard of that before, the sensitivity?
B: I can't say, but everyone is entitled to their own idiosyncratic
reaction.
Lou (to Don): You're sleeping more than you used to, up to ten hours
a day.
B: That's okay, humor that. But don't sleep twenty-four hours a
day. When was your last MRI?
D: July, just after the operation.
Lou (to Don): Do you think you should mention the "everything's
unfamiliar" feeling?
D: Oh, yes. I get this feeling every once in a while that everything
is unfamiliar. It's like everything is on the verge of my not knowing
what it is. I mean, underneath, I really do know what it is, but
it seems almost like I've never seen it before.
B: That could be a stress reaction. You seem to be a person
who is used to having things at your fingertips. You've been
under much stress lately. Give yourself some slack.
Brigid then recounted how she suffers from stagefright, especially
just before she gives a lecture. I think she was saying that stress
itself can make everything seem unfamiliar. I don't think Don felt
the experiences were analogous, because he said,
"It seems so much a perceptual thing that it's hard to explain."
B: The lesion or the treatment may be affecting your recent memory.
She noticed that I had been taking notes the entire time and said,
"I'm going to bring you along to take notes next time I go to the
doctor."
Lou: It gives me something to do.
B (to Don): Are you working?
D: It's hard for me to get there and back with a three PM appointment.
I had hoped I could get to the Presidio, but with this weird feeling,
I'm not sure how that will be. It probably will be fine. I'd like
to try it.
B: It will be interesting to see how it goes over time. Have
you had any seizures?
D: No. Do you think this feeling of unfamiliarity might be a seizure?
B: No, but that's something to ask Dr. Berger. It could be a
sensory seizure (as opposed to a motor seizure).
D: It's a pretty constant feeling.
Brigid then offered to get Don some coffee while we waited.
In this interval, we decided that Don's weird sensation of unfamiliarity
was the opposite of deja-vu.
"What's the opposite of deja?" I wondered aloud. "Presque?"
It was 1:30 before Dr. Berger came in. He said he wished he had the
films here so he could show them to Don.
"I called this morning to see if we should bring them," I said.
"The nurse said, 'No.'"
"I don't really need them," Dr. Berger said.
Don said, "I want to thank you for what an excellent job you did."
Then Don told him about the Thalidomide trials.
Berger said, "The Thalidomide is a good idea."
D: Should I continue it after the radiation is over?
Berger: Okay, but check with Dr. Prados.
D: Is the theory that it works because it goes across the blood-brain
barrier?
Berger: The blood-brain barrier is - we don't have to worry about that.
That's a belief from the 1970's. We don't follow that anymore.
On this startling revelation, he left to answer a phone page. He
returned shortly, apologizing for the interruption.
Don: So, my surgery has healed as much as it will?
Berger: It's fine. It's all healed very nicely.
D: Does radiation affect cancer cells selectively?
Berger: Yes. Brain cells can fend it off - normal, healthy cells.
But tumor cells, not as well. The normal brain will recover by
itself. Press on.
He seemed about to leave on this bully note of encouragement.
Don: Is Dr. Prados's name pronounced 'Prah-dose' or 'Pray-dose'?"
Berger: Prah-dose.
I asked Don, "What about your presque-vu?"
Don again described the sensation.
Berger: It may be a side-effect of the surgery. Don't be concerned.
Lou: So, it's not a sensory seizure?
Berger: No.
Don: I also find bright lights and sharp sounds disturbing.
Berger: Anti-convulsants can cause that. A lot of these subtle
things will melt away. Don't worry about them.
He shook our hands.
Berger: Good-bye.
And with that, he was out the door. I looked at Don in
amazement. "What was that?" I asked, "A drive-by shooting?"
"I didn't think there was any real reason for us to drive up
here, anyway," Don said. "We could have done all that by phone."
It was now past 1:00 PM, so we stopped by Lowenstein's office.
He was indeed in and slipped us in before his 1:00 appointment.
The first thing he did when we sat down in a private examining
room was apologize that no one had found Don's tumor earlier.
Don later said he was much affected by this apology. It was
the only one he ever got.
Lowenstein also mentioned long-term survivors, some of whom he
had seen here at UCSF. "Your youth is a great help," he told
Don. "Survival rates for diagnoses after age 59 are not good.
The other thing that seems to help is a spiritual base, which
you seem to have, and the love of a spouse."
"Which I also have," Don said, squeezing my hand.
The visit ended soon after that, Lowenstein mentioning that he
had to see his regular appointments, Don mentioning that we had
to get down to Stanford. "But it's all one big hospital now,
isn't it?" Don said.
"Well," Lowenstein said and made a wry face. "Not for long. I
think a divorce is in the works. And it will be a healthy divorce."
Don and I then got burritos to go at Milberry, hopped in the car,
and headed south. Don recalled that he hadn't asked Berger about
riding a bicycle. "But I guess this is the last of my contact
with Dr. Berger," he said. "The surgery is over."
"And completely healed," I added.
Don wasn't completely convinced of that. There were parts of his
scalp that were still tender, and parts that seemed numb to him.
After the radiation treatment at Stanford, we were asked to wait
for Dr. Hancock, who wanted to speak with us. While we waited,
Don read the paper while I read the pathology report. The report
contained detailed descriptions of the tissue that had been removed
during surgery: size, shape, texture, and - most stomach-turning -
color. Although I didn't understand any of it, the descriptions
themselves were upsetting. I needn't have read it. Later, Don
said it gave him the creeps just watching me read it.
Hancock asked Don many of the same questions he had been asked up
at UCSF, especially about headaches and other side-effects. About
the headaches, he said, "There is
thought to be some swelling with radiation.
If the headaches aren't managed by Tylenol and codine, then
we'll use Decadron, a couple of milligrams, twice a day."
Don: Vicoden seems like heavy artillery. Is it okay? I'm worried
about drug interactions with all the drugs I'm taking.
H: Vicoden is okay.
D: I've noticed an intolerance to bright light. I've mentioned this
to several doctors, but no one has anything to say about it.
H: Menengial irritation can produce photophobia, so that could be a
cause. I've had one other patient who had this complaint, but
we have no understanding of the mechanism behind it. The sensitivity
faded with time. Much of the
brain works on inhibitory signals. Without them, we are unable to
produce fine motor movement. We get just spastic, jerky movement.
That could be what's happening to you. The inhibitory bits that
regulated sensory input for you may be in the bottle or damaged.
(There's Dr. Hancock's delicate phrasing again:
part of your brain is in a bottle. He continued.)
H: Are you on Thalidomide?
D: Yes.
H: I have no objection to that.
D: I attributed the headaches to it at first.
H: Have you any other questions?
Don shook his head. I said, "What about the presque-vu?"
D: I sometimes get a feeling that nothing is familiar. It's
like deja-vu where, underneath, you know
you really haven't been here before. Underneath this feeling, I
really do know where I am, but it feels like I don't.
H: It could be your temporal lobe acting up.
D: It has good reason!
H: What's left of it. Are you still on Dilantin?
D: Yes. 300 mg daily.
H: If you keep having episodes, maybe we should up it.
L: You had said you were going to look into alternatives to Dilantin.
Have you found any?
H (to Don): It's possible you could have little loci of seizures.
I'll look at the last Dilantin level and see if it needs to be
adjusted. When was your last blood level taken?
Don told him. He told us to meet him at the nurses' station, then
left the room to check Don's records.
"He did it again," I said. "He didn't answer the question."
But when he caught up with us at the nurses' station, he did.
"Your Dilantin level is 11.9," he said, "and therapeutic range is
between 10 and 20. If these episodes become more severe or more
frequent, we'll up it to 400 mg a day. If that doesn't work,
we'll consider alternatives. Neurotonin is a pain to take - you
have to take it three times a day, instead of just once a day like
Dilantin. Have your levels checked again at the beginning of next
week."
On the way back from Stanford, we stopped by the Palo Alto Medical
Foundation and I dropped off the forms I filled out for my
intake interview. I was looking forward to talking to a therapist
tomorrow. Then we drove to an orthopedic supply store in Palo Alto
and bought a wedge-shaped pillow for Don to put under his torso while
he sleeps. It will keep his head elevated, won't scoot out from
under him in his sleep, and won't affect me. He wanted to be sure
that he could still roll onto his side and put his arm around me
in the night. I told him that was a concern of mine, too.
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Wednesday, August 4
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Thursday, August 5
The pillow is a success. For the past two mornings, Don has
awakened without a headache and has not suffered nausea. It's
a great low-tech solution. Plus, it doesn't interfere with his
putting his arm around me. We're both happy about that.
This was the first day Don rode the bus both to and from Stanford.
The trip there was full of little disasters. The phone rang just
as he was leaving, so he dashed back into the house to answer it.
Then, just as he was closing the door again, he realized he'd left
his keys in the house. He waited on the front porch for an hour,
hoping Steve would come home for lunch, but he didn't. Then he
went looking for a pay phone, making little sprints down Villa
Street between bus stops, not wanting to be caught between stops
when the Number 50 came along. He was unable to find one, though
his mini-dashes took him all the way to Castro Street.
From this story, I was able to deduce that he was only looking for
the Number 50 bus on my side of the street. "The bus also runs on
the other side of the street," I told him. "If you catch it on
the other side, your trip to San Antonio Shopping Mall will be shorter."
"But they both go to the San Antonio Shopping Mall, don't they?"
he asked.
I agreed that they did.
After we hung up, I said to Mark and Brad, "Well, I guess we now know
what the right temporal lobe is for. Bus schedules."
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Friday, August 6
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Saturday, August 7
We met David for a hike on Mount Tam around noon. David was
not feeling well. He suffers from depression and has been
depressed since returning from India. It is remarkable the
number of Don's friends (and family members)
who suffer or have suffered from
severe depression. I have noticed a tendency in the "get well"
cards and telephone calls Don gets for the message to start
with "sorry to hear about the cancer" or "we're praying for you,"
but quickly turn to an enumeration of the troubles the card
sender or caller is currently facing. I think Don's natural
capacity to show love attracts this sort of person. I am very
worried that they will be devastated if Don has to leave us.
Not only will they lose a dearly loved friend, but they will
also lose one of the main emotional supports they've relied on.
That evening, we had dinner with Katherine and her new beau
Duane and with Jessica and Kent. We ate an excellent meal at
a Thai restaurant on Piedmont. Afterwards, we stopped for
ice cream, but as the place was crowded, the group decided not
to try for a table. I got what I thought would be a single
scoop of blueberry cheesecake ice cream on a cone to go. What
I got resembled a mountain in the act of performing a slow-motion
avalanche. I got the blueberry because I thought Don would like
it - my personal preference was for cherry. I should have asked
first. It turns out he found the size of the serving too daunting
and didn't attempt to join me in my landscaping project of trying
to eat it without dropping half of the scoop on the sidewalk or
my shirt. He said he didn't want to get it all over his beard and
moustache. Fastidious, isn't he? I ended up eating almost the
entire thing by myself, something my stomache regretted later.
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1. David and Don on Mount Tam
2. Lou and Don on Mount Tam, taken by
David
3. Dinner with Katherine, Duane, Jessica,
and Kent
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