Sunday, July 18
Don and I have another "perfect" Sunday morning. We eat
a leisurely breafast in the Rockridge area, then go antique
shopping in the neighborhood. There are many shops that I
like here. I could easily imagine living in this neighborhood.
Later that afternoon, we went to a BBQ at my friend Peter's in
San Francisco. I hadn't seen Peter in years. Unfortunately,
though the day was sunny, there was a brisk, cool wind, and
Don soon grew chilled, even though he was sitting in the sun
in the back yard. We stayed only about two hours. Peter and
I had a brief ten minutes to catch up - he was very busy hosting
the party - but not much time to really renew the friendship.
I also ran into David, the bank examiner, but he left shortly
after we arrived.
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Monday, July 19
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Tuesday, July 20
Notes from meeting with Dr. Hancock, radiation oncologist at
Stanford University Hospital.
Don was first examined by Dr. Mehta, Dr. Hancock's intern. We
noticed that his first name was Vivek, and commented on the
connection to Don's Sanskrit name, Vivekan.
Dr. Mehta: Have you had any headaches or visual or hearing
problems?
Don: I occasionally have a headache on waking up, but not often.
I treat it with Vicodan.
Lou: You need to mention the bright lights and bright sounds.
D: Oh, yes. I find bright lights, like the sun in my eyes, and
bright sounds, like if you drop a handful of flatware into the
drawer with other flatware - I find those sounds disturbing. They
don't cause headaches, but they give me a sense of unease.
M: Has your field cut been stable since December?
D: My neurologist says there's been some improvement. Mostly,
my left neglect has improved.
This is the first time I've heard Don limit the improvement in
his field cut to his neurologist's comments. I have never thought
the middle field was recovering much. I wonder now if Don also
feels it is not recovering.
Dr. Mehta proceeds with the usual
physical that inventories neurological deficits. Then he tells
Don to take off his shoes so they can do a Babinsky test later.
We have to wait nearly an hour before Dr. Hancock can see us.
I joke that they wait until the anxiety meter in the room
reaches a certain point. I try to pass some of the time by
reading Don amusing parts of Cryptonomicon aloud.
Dr. Hancock comes in along with Dr. Mehta and repeats many of
the same questions and physical exam. Dr. Hancock examines Don's
armpits and groin, though, something no one else has done.
Dr. Hancock: Did they talk to you about what your diagnosis means?
Don: Yes. It's dire, but the final outcome is not painful.
H: How have you been functioning since surgery?
D: Great. I've actually gotten into work a couple of times.
I mention that last week, Don actually took care of me as I
was recovering from food poisoning. Don takes this opportunity
to introduce me as his partner.
H: Is your partnership sexual or business?
D: We are life-mates.
H: What kind of jobs do the two of you do?
D: I write for an on-line medical service. I write articles that
review research in alternative therapies.
L: I'm a geek. I work for a software consultancy.
Hancock then left for a while to answer a page. Don and I discussed
the unusual step Hancock took to check his lymph nodes. I said,
"My guess is that he was checking for swelling, for signs of
lymphoma."
Don remarked about the odd way Hancock asked about our relationship.
"'Is it sexual or business?' That's a little ineligant, isn't it?"
he said.
When Hancock returned, he and Don turned to the business of
discussing Don's therapy options in light of his surgery and
the existence of residual tumor. Hancock said, "You picked the
right place to have this kind of tumor."
"Do you mean geographically or anatomically?" I asked.
"Both," he said. "With the temporal lobe, you can pretty much
cut it out and not suffer great deficits. We don't really
know what it does. And UCSF is one of
the best places in the country to have that kind of surgery."
"It would be harder if it were the left temporal lobe, though,
wouldn't it?" I asked. "Because of the language centers."
"There are language areas in the left temporal-parietal area
for right-handed people," Hancock said. I noticed he didn't
answer my question directly. He continued, "Things look better
than in most cases for glioblastoma multiforme. Youth is a
good factor in your case. People with this diagnosis in their
70's don't survive long. But even with the factors on your
side, these have been disappointing tumors from everyone's
point of view."
Don: Will the radiation therapy be on-going?
Hancock: Chemotherapy hasn't been a home-run. People like to
reserve that for when other therapies don't work. [Again,
I noticed this wasn't a direct answer to Don's questions.
Don didn't ask if chemotherapy could be used instead of
radiation.]
D: Have there been any promising experimental approaches?
H: We're trying carboplatin intervenously here at Stanford.
Does it work? We don't know yet. We also don't know yet about
hypoxia agents to treat the necrotizing center of the tumor,
either.
D: What about using Thalidomide?
H: I don't know about the research being done on Thalidomide.
Various gene therapies are being tried, but they are so early
in the trials that so far they are only accepting patients
whose tumors have recurred. There are also experiments with
embedding wafers in the tumor [to poison it]. But there's
been nothing yet that's been an obvious hit.
D: What about Burzynski's work?
H: (Chuckles.) Did you ask Dr. Prados that question?
D: No.
L: Yes, you did. He said you would have to go to Houston for
that treatment.
H: Dr. Prados faced a frivolous lawsuit from a
patient's family for failing to disclose
Burzynksi's research to the patient. Most of us are quite
skeptical of the program.
D: Have you seen any data or independent evaluations of Burzynski's
work?
H: No.
D: Getting back to radiation therapy. What side effects can I
expect?
H: Some fatigue. Some people get headaches, presumably from swelling
as a result of the therapy.
D: What about unintended damage to the brain?
H: The margin around the resection is treated in such a way to
minimize collateral damage. The placement of the tumor is what
dictates this. Sometimes, it is very close to the optic nerve.
Sometimes, nine to ten months after treatment, areas exposed to
high doses of radiation can die. We then have to figure out if
that is a radiation injury or the tumor dying off. Another effect
is that you'll have the strangest haircut. You'll have patchy
baldness. Sometimes the hair comes back with a different texture.
Sometimes it doesn't come back at all. People who have large
radiation doses complain that they perceive themselves to be
slower. Some say they have calculation difficulties.
L: Is that likely to be a problem with Don?
H: We use a three-dimensional planning system to minimize collateral
damage. You will probably get an itchy ear due to some swelling
and decreased drainage, much as you would get from a cold. We
do our best to minimize damage, but if the radiation comes in at
a certain angle - the top of your head, for instance - you can
experience a loss of taste.
(Again, Dr. Hancock did not directly answer my question. Will
Don be getting "high dose" radiation? Are these specific
side effects that can happen in his specific case? I found
Dr. Hancock's obliqueness and his tendency to speak in generalities
frustrating.)
Don: How often is treatment curative?
H: It is not curative, but there are people who survive. Some
despite our best efforts.
Hancock was attempting wry humor here, but Don did not hear it.
He later told me he doesn't remember the "despite our best efforts"
comment.
D: When do treatments start?
H: We first need to do a planning CT scan, using contrast. We'll
then use that to transpose the MRI scans, and use that to set up
targeting. It will take several days to do that. Once treatment
starts, you'll get half-hour doses each day, five days a week,
for six weeks.
L: Things have moved slowly since the surgery, as if there were
no particular sense of urgency.
H: I would like to get things started sooner rather than later.
If we had a planning slot today [for the CT scan], I'd use it.
Dr. Mehta left the room at this point, presumably to check on
the schedule for the CT scan.
D: If we get the CT scan today, when will the first treatment be?
H: Monday or Tuesday of next week.
L: Don and I are planning a trip to Hawaii around the middle of
September. Will treatment be done by then, and should we watch
out for any side effects? I mean, are there any side effects that
would make a trip to Hawaii a bad idea?
H: A trip to Hawaii sounds like a good thing to do.
L: My sister had non-Hodgkins lymphoma, and following her chemotherapy,
she had to be bundled up to protect her against the sun. Will Don
have to do that?
H: Be cautious of rashes due to the interaction of Dilantin with the
radiation. A few people get this reaction with brain radiation.
D: Is there some alternative to Dilantin?
H: Have you ever had a seizure?
D: No.
H: There are alternative drugs without the side effects of Dilantin.
D: What about the anti-seizure properties of niacin?
H: Do you mean Nicotinamide?
It makes some people flush and sweat. I have never used it to
control seizures. Do you want me to look into alternatives to
Dilantin?
D: I will leave that up to you.
H: Seizures are often caused by scarring of the brain. A tumor
can also do it. The surgical scar from your craniotomy can also do
it. Neurontin [did I spell this right?]
is a possible alternative to Dilantin. It is an
odd agent [I think he meant that the mechanism by which is works
is unknown] with no side effects.
D: What are the side effects of Dilantin?
H: Most people say they feel drunk.
D: I've felt not clear mentally while on it, and a feeling that
things were unmanageable, out of control. It was a disturbing
feeling.
H: Temporal lobe seizures can feel like deja vu. But
the nature of temporal lobe seizures is idiosynchratic. The
most serious side effect of Dilantin in Stevens-Johnson syndrome,
in which a rash develops into blisters. We'll get opinions
about what to use instead of Dilantin.
I was interested in gauging how much Don was at risk for a temporal
lobe seizure, so I asked, "Is there much of the temporal lobe left?"
"No," said Dr. Hancock.
As the interview wound down, Dr. Hancock brought up the carboplatin
chemotherapy trials being done at Stanford. "If you're iterested
in them, I'll send you upstairs to see my wife." Interestingly,
he didn't mention his wife's name.
Don said, "Let's do the first six weeks of radiation therapy first."
"Fine."
"I'd like to see the MRIs," Don said.
"To help with visualizing?"
"Yes."
"I think they're still up in the next room," Dr. Hancock said.
We all got up to leave. Just as we did so, Dr. Mehta rejoined
us. He was able to fit us in for CT-scan that afternoon. We
walked across the hall to the room where the MRIs were illuminated.
I pointed out to Don the one that most clearly showed the tumor
before surgery. He nodded.
"Can we see one from after surgery?" I asked. I wanted to help
Don focus on the few places where there was still some tumor left.
"We don't have those up," Dr. Mehta said, then he hustled us
across the hall to fill out some consent forms for the CT-scan.
I was disappointed that Don didn't get to see how good a job
the surgeons had done, but I'm not sure Don would have felt the
same way I do. There is, after all, an enormous hole in his
head where the tumor was. It was also apparent from this look
at the MRIs that Don does not remember seeing them when we talked
to Dr. Prados.
We just had time to eat a late lunch and return for the CT scan.
I took Don to Max's in the Stanford Shopping Mall. I had hoped
to show him the outpatient library there, too, but we didn't have
the time. I called work and told them I'd be taking the rest of
the day off.
The CT-scan went without a hitch. The appointment for the first
treatment was set for 3:00 PM on Wednesday, July 28. I would
have preferred Monday (hell, I would have preferred today), but
Wednesday will come soon enough. Again, they seemed reluctant
set up the full six-week schedule at this point. I don't know
why treatment has to procede in such micro-steps, but patience
is not one of my virtues.
The concreteness of Dr. Hancock's descriptions of side effects and
outcomes of treatment
made quite an impression on both of us. It was all suddenly
quite real and frightening. That night, Don said, "I'm just now
realizing that I'm going to die."
I hugged him. He laughed. "I mean," he said, "well, okay,
we're all going to die, eventually. But I know from what
and I pretty much know when."
"It's frightening when death is not an abstraction," I said.
"But it's comforting when love is not an abstration, either."
We hugged.
"Well put," he said.
Later that night, with almost chilling calmness, we discussed the
conditions under which Don would find it intolerable to live.
I asked him to write them down for me so I could use them as a
guide. "I promise I will honor your wishes," I said.
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Wednesday, July 21
I was awakened at 7:40 AM by a call from Maha. She was back in
Arkansas, where, of course, it was not 7:40 AM. She was calling
to speak to Don. I handed the phone over to him, then he decided
to take the call in the livingroom. He went out there naked, and
as he was settling in, I asked Maha if they didn't have clocks where
she lived. She tried to persuade me that it must be after eight
o'clock Pacific time. She did not succeed. She also did not
apologize, which pissed me off.
I got up and took an afgan out to the livingroom to cover Don
because the morning was chilly. Then I went back to bed and back
to sleep.
A half hour later, I was awakened again. I thought I'd just let
the phone ring over to Don's message box, but it kept ringing
instead of picking up. I wondered why Don wasn't answering.
Grumpy and unhappy, I answered.
Stanford Hospital was calling to ask if Don could come in to meet with
Dr. Kendra Peterson that afternoon at 1:00 PM. I told them
that Mr. Flint was planning on going to San Francisco today,
but they could try to schedule it directly with him. They
said they'd call back in half an hour.
I went out into the livingroom to see why the machine hadn't
answered. Don was out there, looking at some papers. I noticed
the answering machine's lights were not on. "You've unplugged
the phone again," I said.
"How could I have done that?" he cried.
"I don't know how you did it, but you did it," I snapped back.
He looked at the power jack on the phone, which was still
plugged in. As he did so, I heard the other end of the jack
fall out of the wall socket. Disgusted, I went off to the
bathroom. When I came back, I told him about Dr. Peterson
wanting to see him today. We didn't know if this was Dr.
Hancock's "wife" who merely wanted to assess his interest in
the carboplatin trials or if this was the neuro-oncology
appointment that Dr. Prados had indicated we should set up.
When they called back, Don determined that they wanted a full
consultation with MRIs and pathology slides. I got on the
line at that point. "Can't you just get the slides from
UCSF? Aren't you one big happy hospital now?" The woman on
the other end said that it was sometimes possible, but that
sometimes they needed an additional release form. We determined
that Don could fax them his signature if needed.
Then Don and I went out to Town and Country shopping center
to buy our tickets to Hawaii. Don bought mine, and I paid the
$75 ticket alteration fee for his. Then we went to the
University Avenue CalTrain station. The train for San Francisco
was arriving just as we were, so we had to run to get down
the El Camino side of the ramp and up the Alma Street side.
Don was dragging the valise along on its wheels, which weren't
made for such vigorous action. The valise kept tipping over
and halting Don's progress. I grabbed it and ran with it.
We could hear the train rumbling to a stop overhead as we
went through the tunnel.
I arrived at the top of the Alma-side ramp gasping. The
doors to the nearest carriage opened and I thrust my arm
inside to hold them while I remained on the platform.
A man approached me. "Excuse me," he said,
"I need the fare to San Francisco to make a doctor's
appointment."
I was holding the door to the train carriage open with my
arm, which also supported Don's valise. I had picked it up
because I was able to run with it much faster than Don could.
He was still catching up to me when I was accosted by this
pleasantly dressed, smiling black man.
I stared at him in bewilderment and anger.
He got the message. "Maybe some other time," he said, and
got on board without the benefit of my largesse. Don followed
him on and I gave him a kiss and his valise. Freed of the
encumberance of my limbs, the doors hissed shut and the train
rumbled off to San Francisco. If all went well, Don and I would
meet up again Friday evening in Oakland.
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Thursday, July 22
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Friday, July 23
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Saturday, July 24
We went out for brunch at Rockridge Cafe again, then shopping at
Rockridge Antiques, where I grew very fond of a seven foot sofa
for $2,800. Yeowch! It probably wouldn't be the same without
Don massaging my feet on it, though. We decided to see Trick,
which was playing at the Embarcadero Center Theatres, so we hopped
on BART and zipped into The City.
On our walk through the Embarcadero, the subject of interment
shomehow came up. "I'd rather be cremated," Don said.
"Less mess."
"I'll keep that in mind," I said. "Is there anyone you would
like us to throw your ashes in the face of?"
"No," he laughed, and recalled the story of people trying to
scatter someone's ashes at the beach, only to have them
blow back in their faces.
"Actually," I said, "I was thinking of various scattering
places last night. I hope you don't think that's morbid."
"White Crack," he said, "definitely."
"I was thinking of that hillside on Mount Tam where we made love."
"Yeah."
"If you have wishes like that, please let me know."
"I will." We walked on in silence a bit. "I can also think
of conditions I would find intolerable," he said.
"Let me know what they are," I said. "In fact, I'd appreciate
it if they were in writing, if you don't mind. I'd always want
to do what you ask, but I'm afraid I might forget in the emotion
of the moment."
"Okay. I'll write something up for you."
"I intend to honor your wishes," I said, "no matter the cost."
"I appreciate that. Thanks."
Later that evening, while surfing the net, we came across the
names of two researchers doing Thalidomide studies. Joseph Poen
at Stanford was one of them; there was another at UCSF.
This got Don to thinking about the course of his treatment.
"How many surgeries before I come out of it with
significant deficits?" he wondered aloud.
"Of course, I've come through two already pretty well.
But how many more?"
I remembered that he had written someone once that he'd had
enough brain surgery to last a lifetime, and that was back
in April or May, before we knew about the tumor.
Over brunch at the Cafe, we had talked about there being no
"who" except a moving locus in the "what" of a body, like a
lense moving over the surface of a map. Everyone
goes through gradual transformations throughout life, but Don's
transformations have been physical and abrupt. Is he the same
person he was in November? In June? What value is the notion
of "the same person"? His comment about "how many surgeries"
brought the topic up again. He said he recognized that the
notion of "who" was an illusion.
"The thing is, how do you recognize that it is an illusion,
and still stay in touch with the here and now?" he said.
"I have a very strong sense of choosing to come here, to this
life, so I could experience the here and now, a place full
of perceptions. It is also a place full of pain, and that
makes it very hard. But it is so beautiful."
He went on, "Angelone once said it was my karma that good things
keep happening to me. That may seem a strange thing to say,
considering what has happened to me, but it is
good. It's life. It's what I came here for." He measured a
tiny space in the air with his thumb and forefinger. "You can't
come for just this much of it."
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