Sunday, April 2
We woke to the sound of birdsong. Looking out of our
bedroom window at the layout of the deck and the birds
pecking at the birdfeeder, Don said, "We have a happy
home."
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Monday, April 3
A horrible dream.
I am lying awake in bed next to Don, listening to night sounds.
(We had gone to bed the night before listening to birdsong.)
It is mostly quiet. Then, in the far distance, I hear a chilling
sound. It is somewhat like a train whistle, but it is compounded
with a chorus of wailing. This is no freight train. This is
something large and implacable and animate. It terrifies me.
Then I hear it again. Although it is still quite distant, I can
tell it is getting closer and moving fast.
I get out of bed for I know what it is. It is the "soul catcher,"
the cart of the Ban Sidhe, and it is coming for Don. I turn and
look at him asleep on the bed. "No," I say, "not so soon. Don't
leave me so soon."
I do not speak aloud, but say the words only in my head.
I have been very quiet, careful not to wake him.
But even though he cannot hear me, I see his forehead
forrow and a frown deepen on his face. Thinking he is having
a nightmare, I reach out and touch him. He wakes and looks me
in the eyes. "I'm sorry," he says. "I feel so guilty leaving
you."
I am startled and horrified that he knew what I was thinking.
The dream is over now and I wake up for real. There are indeed
train whistles in the night - our home is only a block from
the CalTrain tracks - but the intensity of the dream cannot
leave me. I think for the first time that I know he is going
to die, and that it will be sooner than I am willing to think
about. Now, I must think about it. And perhaps he is thinking
about it, too. I saw his copy of The Tibetan Book of
Living and Dying beside his meditation pillow last night.
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Tuesday, April 4
We had our "second opinion" consultation with Dr. Peterson
today. Before we got there, I telephoned her nurse and told
her there were four questions we'd like to ask:
- What are Don's surgical options?
- If the combination of tamoxifen and etoposide doesn't
affect the tumor, what is the next step?
- If nothing is effective, or if we decide to stop treatment,
how long would it be before Don was in a coma or in a hospital
with no expectation of discharge?
- If tumor cells are circulating in his cerebral spinal
fluid, which the MRI report suggests might be the case, how
can that be treated? Do people recover once the cancer gets
to that stage?
I told the nurse we'd like answers to the first two of these
questions during the consultation. "I don't know if I will
be able to ask the other two if front of Don," I said. "I'd
be scared to."
On the way to the consultation, I asked Don permission to ask
the first three questions. I didn't ask him about the fourth
one. I am afraid he would freak out if he thought tumor cells
were circulating. I'm not sure how well I'm taking it, actually.
When we got to see Dr. Peterson, Don started right in, asking
her about the combination of tamoxifen and etoposide Dr.
Prados had prescribed.
Peterson: We've used tamoxifen before in the past.
Don: What results have you seen?
P: We've seen tumors stabilize, but not shrink. There have
been reports of the tumor shrinking with tamoxifen, but we
haven't seen it in our patients.
D: What's the rationale behind combining it with etoposide?
P: The principal of using two drugs to fight brain tumors is
common because if the cells are resistant to one drug, they
may be sensitive to the other.
D: Has etoposide been used against gliomas?
P: Yes, frequently. So, that's the current plan, to use
tamoxifen plus VP-16 [etoposide]?
D: Yes. Dr. Prados has signed me up in a Phase II study.
P: The advantage of that is that it may do you some good, won't
do you any harm, and we might learn something from it.
D: If there is tumor regrowth, is anti-seizure medication
called for?
P: About a third of tumor patients have seizures. If you're
doing things that make seizures dangerous, if you're driving...
D: Not yet. But I'm not going to get into a car medicated.
P: If I were to put you on an anti-seizure medication, it would
be neurontin, not dilantin.
D: Good, no dilantin. The mental side effects are wretched.
P: We don't titrate the dose with neurontin, so there
would be no blood draws [for that].
D: What kind of surgical options are there?
P: The bulk of what has grown has been in the temporal lobe
and could be resected. If they could resect it, would you want
to?
D: If I'm doing fine, why do surgery?
P: If a surgeon thought he could get the bulk of it out, that
would be good. Chemotherapy works best on small tumor masses.
Why are you back on decadron? Was it because of symptoms or
the MRI?
D: I had headaches.
Lou: Dr. Prados said he was beginning to notice weakness on the
left side.
D: Do you know about the blood-brain barrier disruption studies
in Oregon?
P: Yes, in Portland.
D: Do we have to go there for it?
P: Yes. The blood-brain barrier is opened only for about twenty
minutes to an hour. They've gotten good results with lymphomas,
but glios aren't as responsive. The technique causes a lot of
fluid to be injected into the brain, causing swelling and
possibly seizures. The side effects would rule it out, in my
opinion. I think being close to home with family and friends
near by is a more important consideration at this point than
flying off to Timbuctu for a study whose efficacy is unknown.
D: What about the copper-depleting drug that's being studied
at Moffet Cancer Center?
L: And at Wake Forest.
D: I can give you the URL for the Moffet study.
P: If it's a drug that's readily available [at a pharmacy],
I can write a prescription for it. I don't have anything
else [by way of treatment options] readily available.
D: What about low-dose naltrexone?
P: How long is it until your next MRI?
L: The next MRI should be done sometime between May 8th and May
15th.
P: So, we have plenty of time - a month to about six
weeks - to look at options. How does naltrexone work?
D: It blocks opiate sites.
P: I haven't seen that.
D: If I come across this kind of information, who should I
give it to?
P: What kind of results does he [the doctor who reported using
naltrexone] report?
D: Clinical experience.
P: Clinical results, but no study?
D: Yes.
P: Not published?
D: No.
P: I'd be dubious. I'm not sure I'd choose that first. I sense
that you want to push ahead.
D: Yes.
P: My sense is that you are doing well right now. At some point,
you may want to say, "I've had enough of coming to see doctors.
I don't want to just keep doing the next thing and the next thing and
the next thing." I want you to know that
I would hear you on that, and I would honor it.
D: I'm glad to hear that from you, and from Prados, too.
P: Ultimately, you're in charge.
D: Well, so far, the next thing and the next thing and the next
thing haven't been so bad.
P: And so far, you're doing pretty well. You're functioning well
at home? Dressing yourself, bathing? Lou's at work and you're
home alone?
D: Yes. I'm trying to hook up with the state rehabilitation
office to pay for driver training. It costs $248 an hour.
P: Yikes, that's expensive.
D: That's why I'm trying to get the state to pay for it... I'm
sorry, what was the point?
P: How independent are you?
D: Oh, yes. I get around OK without a car, but a car would make it
a lot easier.
L: Tell them what you did yesterday.
D: I went to see my Chinese herbalist in Marin.
I took the train from Mountain View to San Francisco, then
took a bus to another bus, and took that bus to Marin. A car would
definitely be better.
L: So he gets around pretty well.
P: You're not sleeping more than usual?
D: I've always been able to sleep.
L: He was sleeping about 10 hours a night before he started on
the decadron.
P: Well, you look great.
D: I feel good. I was having some fatigue with the temozolomide, but
that's subsiding.
Dr. Peterson then conducted the physical exam. She again said
he looked pretty good, and asked, "Do you have any questions?"
Don said, "No."
She then turned directly to me. "Do you have any questions?"
The two Big Questions had not come up. Did I want to ask them in
front of Don? I quickly decided I didn't have the courage.
"No," I said with a quick smile and buried my head in the notebook
where I was taking notes.
"Yes," Don said. I looked up. He was looking at me. "If no
treatments are effective, how long do I have?"
I was relieved and stunned. And very proud of him for his courage.
"I hesitate to say," Dr. Peterson said, "because I'm always wrong.
But we've seen how fast this sucker has grown since the last time.
I would say months. Not a year. But not weeks."
"That's about what I thought," Don said.
"So, we'll push ahead [with the tamoxifen and etoposide] and see
you in about six weeks, after the next MRI."
We ended on a social note. I asked for their home phone number
and address so Don and I can come see how Dr. Hancock built his
flower beds. She asked for the URL to our wedding pictures.
I intended to go to chorus rehearsal that evening, but around
6:15, Don called me and asked if he could come up to the office
to say good-bye to me before I went. He has never done this
before, and I could understand why he would want to. Hearing
someone say how long you might have to live is very frightening.
If he needed me, I was willing to stay home with him tonight rather
than go to rehearsal.
But when he arrived at the office and I offered to stay home with
me, he was emphatically against it.
"No!" he said. "Your singing is important, and you have so
much to contribute to the chorus."
I told him that I would be singing to him, then, this evening.
I dropped him off at the Jamba Juice near our house, where
he planned on getting "a vat of retinoids."
My promise to be singing to him this evening
seemed to put some additional spirit in my voice. At the
end of rehearsal, the bass standing next to me said, "You're
really got a beautiful voice." I was very flattered. No one
has said that to me before.
When I got home, the house was completely dark. There were
no porch lights on, nor any lights on in the house. The drapes
were still pulled open. For a moment, I thought Don had gone
out, perhaps to Printers' Ink. For a split second, I worried
that I might find him passed out on the floor.
But he was in bed. He had taken a bath and crawled under the
covers and fallen asleep, withdrawn inward. I was hoping he
would reach out to someone while I was gone, perhaps calling
one of his friends so he wouldn't feel so isolated.
"I'm glad you're home," he said.
I was glad, too. I had meant to do some work on the computer,
following up on Curtis's investment advice for Don, but I
decided to go directly to bed. That seemed a better investment.
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Wednesday, April 5
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Thursday, April 6
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Friday, April 7
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Saturday, April 8
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