Sunday, July 11
After yesterday's conversation at Kim and Bennett's, I decided
to take this thing one day at a time. Tomorrow will be soon
enough to look into the future. So today, Don and walked down
to the Farmer's Market, bought breakfast there and fixings for
lunch and dinner, then did household chores in a relaxed and
unhurried way. Late in the afternoon, before going to John's
birthday party, we were lying in bed, me reading a book and
Don working on his poetry. I said, "This is the perfect
Sunday afternoon for me." Don said, "Me, too."
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Monday, July 12
The alarm, which I had carefully set for 7:05, did not go off.
Or rather, it did, but since it was set on Radio and not on
Alarm, and since Don had de-tuned the radio so it was between
stations, it made no sound. I awoke with a start at 7:50.
We dashed around to get ready to leave. Actually, I dashed
around. Don took his time, making yogurt with blueberries,
sliced banana, and protein powder. I couldn't understand why
he wasn't in as big a panic as I was. I finally took the bowl
away from him and put it in the car. It was the only way I could
get him to leave.
We left at 8:10, phoning ahead to Dr. Prados's office to tell them
we'd be late. We arrived at 9:15. After filling out a few
"I agree to pay for this" forms, we sat down in the waiting room.
And waited. And waited. All that rushing around I did this
morning was for nothing. The doctor was not ready to see us at
9:00, or at 9:30. I told Don, "I'm glad they scheduled in this
little space for us to worry in. I don't think I would be in the
proper state of anxiety without it."
At about this time, we overhear Dan, the receptionist, talking to
someone on the phone in the office across the hall. "Oh, don't
bother," he was saying, "let us worry about that for you."
"See?" Don said. "they can do the worrying for you."
"Great."
We also overhear Dan saying, "Oh, hello Dr. Prados. Your nine
o'clock is here." Then he turns his back on us and we don't
hear the rest of the conversation. I roll my eyes heavenwards.
9:30 and the doctor is just now being informed that we've arrived.
Notes from the meeting with Dr. Prados, UCSF Neuro-oncologist.
Dr. Prados: The diagnosis is grade 4 glioblastoma multiforme,
which is a malignant tumor, a cancer. The grades indicate
how rapidly and agressively it's growing. Grade 4 is the most
rapidly growing grade. Survival depends on response to treatment.
Radiation is the most common treatment following surgery. Most
patients under 55 also get chemotherapy, but the magnitude of
improved outcome is measured in months. In short, the amount of
time gained is offset by the degredation in quality of life due
to the toxicity of the chemo.
Don: Are there any curative courses of treatment?
P: No, it is not a curable condition. 50% of those diagnosed
with this grade of glioblastoma multiforme live one year; 20%
live two years; 5% live five years. Treatment can double or
triple life expectancy. If there's growth during radiation,
then expectation is poor. In 20% of the cases, the tumor is
smaller after radiation. If the tumor is the same or smaller,
you would have an average life expectancy. It is unusual to be
alive and well after five years. The best predictor is how you
feel and how the tumor looks in two to three months.
D: Are there any promising experimental treatments?
P: Yes, if initial therapies don't work. For example, treating
the tumor with stuff we put directly into the tumor through a
shunt.
D: What about Burzynski's work?
P: As I understand it, that's only available on-site at his
clinic, in Houston.
D: I want you to be aware of my interest in doing that, so you
know I'm interested.
P: Yes, I understand. So long as alternative or experimental
approaches are used subsequent to initial therapies, not in
place of them.
D: What proves ultimately fatal in this disease?
P: The tumor exerts pressure on the brain stem, which controls
breathing and heart rate. The pressure eventually leads to coma,
and the coma to death.
D: Is the progression painful?
P: That's unlikely. More typically, there is increased lethargy,
in which you spend more and more time sleeping. From there, you
slip into a semi-coma, followed by one or two days of unconsciousness.
At that point, Dr. Prados showed us the MRI taken before and after
the surgery. The shots taken before show the tumor taking up almost
all of the right side of Don's brain. They also clearly show the
brain stem being forced to one side. The shots afterwards are even
more remarkable. Most of what was a bright mass in the earlier shots
is now a clear, dark region, almost like a placid lake. The brain
stems seems to be nearly back to its normal position. It appears
to be an amazing surgery - amazingly thorough, and amazing that
so much could be removed from a man's skull without killing him.
However, there
are still bright fringes near the inner arc of where the tumor was,
indicating cancerous cells still rest deep in Don's brain.
Don: So, without the surgical intervention, the tumor would have
been lethal.
Prados: Yes. Fairly soon.
D: Is there anything particular about the long-term survivors?
P: Just that they're younger and treatment was aggressive.
D: What are the side effects of radiation?
P: Reddened skin, tiredness, dry mouth, fluid in the middle ear.
Research indicates that Thalidomide with radiation may be promising.
Thalidomide is an angiogenesis inhibitor.
Lou: So, we'll starve the cells as well as zap them?
P: Yes.
D: If the tumor gets that large again, what then? Surgery again?
P: There are lots of options.
D: But most result in "buying time."
P: Yes. But it's what kind of time that counts. It may be buying
time with toxicity, or buying time that's spectacularly good time.
D: Is a hemorrhage unusual for tumors of this sort?
P: Yes.
That pretty much ended the interview, question-and-answer period.
After determining that we wanted to have the radiation done at
Stanford, he gave us the name of the neuro-oncologist there, Dr.
Kendra Peterson, and said to call them tomorrow to set up an
intake interview and a therapy schedule. Then he shook our hands
and left.
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Tuesday, July 13
Jim came for a visit and we all went out to dinner. I left
early to go to chorus rehearsal. During rehearsal, I begin to
feel short of breath and dizzy. At break, I consider going home,
but decide to sit it out. As we leave, I pick up a six-pack
of Seven-Up left over from the chorus retreat. I have
never told Don that I decided to skip the retreat, even though
the chorus had given me a scholarship so I could attend and
Steve was willing to offer Don special accomodations.
When I get home, Don and I
have a discussion about his going to San Francisco and Oakland
by himself on the train. I tell him, "I don't think you're
ready yet. I think you're too vulnerable, and I worry about
your being mugged by someone who would take advantage of your
distraction and confusion." Don takes this very calmly. We
have to cut the conversation short as I suddenly need to use
the bathroom. I have a bout of diarrhea.
I spend a miserable night with chills shaking my body and pain
in my stomach. I take one of Don's Zantec but it doesn't help.
Sometime between midnight and three AM I throw up. I make quite
a mess in the bedroom, hallway, and bathroom. I have to yell
for help. Don and Steve both wake up, and Don takes on the tast of
cleaning up after me.
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Wednesday, July 14
I vomit and have diarrhea several times during the night, ending
with two wrenching bouts of dry heaves. After the last of these,
I take one of the Seven-Ups out of the fridge and pour some
into a glass. Then I stir it to make it go flat and take a
sip. It feels good, but I drink only a few sips. I don't want
to push it.
On my way back from the kitchen, I notice that Don left the
back door open after he cleaned up the hallway. I close it
and take my flat Seven-Up with me back to bed.
In the morning, Steve
drives Don and me to the Palo Alto Medical Foundation, where
Don pushes me through the halls in a wheelchair
on my way to a doctor's appointment.
"Quite a turn-around, isn't it?" I say.
"I'll drive," Don says. "You yell out warnings."
"Field cut! Coming through!" I yell. People scatter.
"I guess this teaches me
for telling you you're not ready to take care of yourself."
Dr. Whistler, who is standing in for Dr. Lane (again; I'm
beginning to call him The Invisible Doctor), diagnoses acute
food poisoning. He tells Don what I can and cannot eat for
the next few days. Looks like Don will be cooking and caring
for me until Friday. At the end of the examination, Dr.
Whistler asks if there is anything else.
"Yes," I say. "I've been trying to get ahold of Dr. Lane
since January to ask him this. I guess you know that my home
situation is stressful," I take Don's hand so he doesn't feel
like I'm blaming him, "and I have a history of not dealing
with stress very well. I also have a history of dysthymia.
So I was wondering if you or Dr. Lane could recommend a
therapist I could see."
Dr. Whistler says he will speak to the psychiatry offices.
He says I should call them later today or tomorrow and set
up an intake interview.
Steve returns and takes us shopping for my dietary supplies:
clear juices and some light-weight vegetables for steaming
and some crackers. Don does all the shopping himself.
Don takes care of me for the next two days: cooking my meals,
doing the laundry, peeking in on me in bed nearly every two
hours. Waz calls when he's out of the house at one time
and tells me he thinks Don makes "a good head nurse." When
I tell Don this, he appears to take offense. Later, he
says he supposes Waz meant a pun on the word "head."
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Thursday, July 15
When I mention to Don that he left the back door open the other
night, he says, "I guess I assumed Steve was still up." This
sounds like a classic right-brain non-sequitor to me.
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Friday, July 16
I'm well enough to go to work. Annie comes down for a visit.
Though I don't get to see her, she does get to see the house
and finds it charming. She and Don have lunch in downtown Mountain
View while I have lunch at home. Curtis calls while I'm there
to ask if Don is available. I tell him to try again tonight,
but he doesn't.
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Saturday, July 17
We do the Saturday morning fun run and coffee, then return to
Oakland. That evening, Don says, "Even with you here, this feels
less like home than Mountain View."
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