Sunday, July 9
I stayed up late this night, reading through the clinical trials
Jerry had sent us. I told Don I felt like I was cramming for
a biology final.
I started categorizing the treatments and trials:
- The alkalating agents, such as procarbazine
- The nitrosoureas, like carmustine (BCNU)
- The platinums, like cisplatin
- Gene therapies, especially those involving p53
- Anti-angiogenic agents, like SU101
- Other aproaches, such as cis-retinoic acid, a Vitamin
A derivative reputed to be a differentiating agent
I looked through this list and noted that Dr. Prados was
involved with studies in half of them. He had at least six
clinical trials going on, including an interesting one that
used a IL4 molecule to sneak a mutated exotoxin into the
tumor cell. Surely, one of these approaches would be appropriate
for Don.
I wanted to be ready to present a whole array of options to
Don and the doctor tomorrow. I wanted to feel that there was
still something I could do. I wanted to feel that there were
choices. Where there are choices, there is hope.
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Monday, July 10
Don had another follow-up MRI at UCSF today.
Dr. Prados read us the results a little after noon.
The tumor was even
worse than it had been on the MRI taken at Stanford in June.
He pointed out that the location of the new growth - along the
frontal lobes, the connection between the two hemisperes, and
along the wall of the left ventrical - ruled out any surgical
intervention or any therapy, such as the implantation of Gliadal
wafers or gene therapy, that required surgery.
I crossed the p53 study off my list.
I asked about the recombinant IL4 and exotoxin study, and he
said that study had been closed due to toxicity. I crossed
off that study. Then he asked Don directly:
Prados: I really want to know if you want to continue treatment.
Don: Well, since you asked...
P: Yes, I asked.
D: Well, yeah. I do.
P: Before we start talking about treatment options, I'd like to
consider what is the likelihood of success and what is the risk
you run to obtain that success. After three progressions with this
rapidly growing a tumor, the likelihood of slowing down the growth
is 10% or less. And what that 10% would do is add about four to
six weeks to your lifespan.
D: So it could add to my lifespan.
P: I think, empirically, it might. But you take
an 80-90% gamble it won't work and a 10% gamble that it will and
extend your life a month. We don't have any drug that will make
your life meaningfully better. The treatment doesn't improve your
quality of life. The odds that it would are pretty remote.
D: Why can't we go back to a drug that worked before?
P: The most rapidly growing cells are resistent to temodar and to
tamoxifen.
L: What about procarbazine or other alkalating agents? Or BCNU or other
nitrosoureas?
P: They all have side-effects that, with your history of pneumonia,
could significantly reduce your quality of life.
D: Are there drugs to alleviate the more serious side effects?
P: Yes, there are drugs to alleviate nausea and other effects, but all
the available chemotherapies would significantly affect your
immune system, which is already compromised. They would compromise
it further. In four weeks, you would suffer a significant dip in
your blood cells, and you'd be once again open to infection with
pneumocystis or something even worse. We can't do anything about
that. You have to consider the pneumonia as a side-effect or
consequence of the chemos you've already had.
L: So, in four weeks, you get a double whammy: the tumor,
and your immune system is knocked out.
D: Why is the immune system always involved?
P: Brain tumors are inherently immuno-suppressive. Almost all tumors
are. They wouldn't grow if the immune system weren't suppressed.
Let me talk about how brain tumor patients die. Progressively,
they get more and more sleepy. They spend more and more time asleep.
Although you may be coherent while awake, you spend less time
awake, and you are awake less often. You may experience confusion,
not remembering who came to visit, but you will also grow less aware
of your confusion.
D: As if I'm very aware of it now.
P: Eventually, people die in a coma - a fairly peaceful death from
the patient's point of view. The period of coma may last as short
as a day. Typically, it's painless.
D: Is there--
P: Hospice would come to care for you in your home.
D: Is there... How does one know when it's time to start making
those plans?
P: If it was clear that treatment was futile, that it might
actually harm me, then an effort should be made towards the goal
of making the time that is left good. The time to make that
decision may be now. I wouldn't want to hasten my discomfort
and death. What you want in this last period in your life,
before the next period or the next life, is... My concern,
as a friend, is that any treatment is going to make your life
worse. It's a fragile time, but it can be a magnificent time.
And to take that fragile time and add something powerful like
chemotherapy...
D: What is the period of time in which I have to make up my mind?
P: As soon as you can make that decision to switch to palliative
care, you should. If we continue with treatment, the
likelihood of hurting you is much greater than the likelihood
of doing you any good. I'm really probably the last person
to recommend stopping treatment - most people accuse me of
over-treating - but I think we have come to that point.
D: How long would you say I have? I know that's an unfair
question, but--
P: No, it's fair. You have a 50-50 chance of dying in the
next four to eight weeks. If the tumor continues to grow
at this rate, you'll soon be bed-bound - in about four weeks,
I'd guess. I'd be surprised if you can even sit in a wheelchair
by then.
Don thought quietly for a while while I put my arm around him.
Then he said, "Then I'd like to stop conventional treatment."
Dr. Prados said we would probably want to spend some time talking
this over, and perhaps we should call him later in the week.
But Don's mind seemed to have been made up. Dr. Prados said he
would sent Margaretta in in a few minutes. Then he left us alone
for a few minutes.
Margaretta came in a little while later to say hello. Don greeted
her, then asked me how I would feel about having him die in the house.
"You mean, about it being right there, in the dining room?" I asked.
That's where his day bed is set up now, and the likely location of
his hospice bed.
"Yes," he said. "I don't want that hanging over you, watching me
die. I don't want to upset you or cause you any pain."
"It will be painful," I said. "Losing a loved one is painful.
But it's not the loved one that's causing the pain. Besides,
I couldn't say good-bye to you. I couldn't give you up to
someone else to take care of. I'm going to have a hard enough
time giving you up to God - or Amitaba or whatever."
Margaretta left then, tears in her eyes. After she left, Don
started talking again about the cis-retinoic acid study. "Dr.
Prados mentioned it twice," he said, "and it is a less toxic
treatment."
After some additional discussion, he decided to go on the
cis-retinoic acid cycle: three weeks on, one week off, three
weeks on, then an MRI. I realized that put him on the outside
edge of the 4-8 weeks, but at least it helped Don feel less like
he was giving up. "I don't want to do nothing," he said. "It
doesn't feel right not to keep trying."
We called Dr. Prados back in and he said Margaretta could set up
the prescriptions and blood tests needed to go on the treatment,
which is a modified form of Vitamin A.
"What kind of treatment would you call this?" Don asked. "How
would you characterize it?"
"I'd classify it as less toxic," he said. But it was not without
its risks. Don would have to watch his colesterol.
I had an additional question. "When it comes to palliative
care," I asked, "how will I know when I should up his decadron
dose, or by how much?"
"The hospice will take care of that," he said. "They'll
be in direct touch with me."
There was not much else to do. It took about an hour for Margaretta
to get the paperwork together, including the prescription for
the 13-cis-retinoic acid. She pointed out that the hospice
organization we pick may have some concern about Don's
taking retinoic acid. She said they will want to be
certain Don is not taking any curative treatments.
"Well, no treatment is curative," Don said.
"They'll only pay for palliative treatment," Margaretta said.
"Well, then that's what we'll call it," I said, "or else just
describe it as a Vitamin A supplement."
We picked up the prescription and headed for lunch. We were both starved.
We went to lunch at the Beach Challet, and while we were eating
Don brought up the copper depletion regimine again. I couldn't
respond with enthusiasm as I had before. I don't think I even
managed to be neutral about it. I just couldn't see the point
of starting a regimen that would eliminate most of the things Don
loved from his diet. It seemed, to me, cruel. Let
the guy die with a chocolate bar in his hand, I say.
At home that evening, we composed a note for Rachel to send out to
the V-News list. We decided to drop any mention of the 4-8
week "deadline." "I don't want any 'last chance to see' visits,"
Don said.
"That's so typical of you," I said, "as if you were going through
all this just to draw attention to yourself."
He laughed. "But I am!"
"The hardest thing is all the consoling you'll have to do,"
I said. "People will call up to console you, and you'll end
up consoling them."
He laughed, but admitted it was probably true. In fact, he had
already had one conversation like that with David this evening. After
telling David the dreadful news, Don managed a pretty chipper
"So, David, how are you?" I nearly spit up the dinner I
was eating, trying to choke back a laugh.
When we were done composing the letter, he said how much he appreciated
my helping him stay in touch with his friends. "You've got a great
set of friends," I said. "I want you to feel as connected to them
as you can." Then I got a little choked up. "Besides, when you're
gone, your friends are all of you I'll have left."
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Tuesday, July 11
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Wednesday, July 12
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Thursday, July 13
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Friday, July 14
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Saturday, July 15
It has been a shitty week. Literally. Don didn't make it to
the toilet for any of his bowel movements. The latest one,
today, was the most successful, though. He didn't let go until
he was right over the commode, and when I helped him drop the
Depends, most of it just popped right out and into the bowl.
Rob and Leah came to visit and were a great help. They brought
a lot of food even though I'd only asked for Martinelli's
sparkling apple juice. They were fixing lunch for us from
the various treats they brought when the hospice intake nurse
arrived. They delicately stepped outside while she interviewed
Don and me.
I hated this process. It was as if Don were being declared
officially dead before his actual death. We had been warned
about this by Margaretta and others, and I had read about it
on the BRAINTMR list, but I was not prepared for the psychological
cruelty of it. You practically have to say, "Yes, I'm dying,
yes, I know I'm dying, and yes, I promise not to do anything
about it."
I wanted to let the 13-cis-retinoic acid slide under the
rubric of "dietary supplements," but Don said he was taking
"retinoic acid," and that made the nurse prick up her ears.
"What's that for?" she asked.
"Dr. Prados prescribed it," I said. "It's palliative."
"But what does it do?" she insisted.
"I think it's supposed to slow down the swelling," I muttered.
I couldn't look her in the eye when I said it.
I stayed with Don and answered most of the technical questions,
but after an hour, I could tell I was just getting
upset and exasperated.
But what drove me from the room was her description of how
medical decisions would be made. For instance, she said,
any decision to take medication to fight pneumonia would have
to be made "by the hospice team."
"It's fairly common for people in the end stages to develope
pneumonia as part of the dying process," she said.
"It's not a bad way to go."
I couldn't believe she said that! How could anyone have seen
Don struggling against pneumocystis and say it was "not a bad
way to go." I wanted to wring her neck and ask her while she
was gasping for air,
"How about this? Is this a bad way to go?"
Instead, I went outside to the garden where Leah and Rob
were sitting and vented my frustration.
I couldn't imagine a more hope- and soul-robbing process.
You practically have to swear on a stack of
Bibles that you've given up all hope. I still have hope
for Don. I still have hopes and plans for his life.
Perhaps it will be a short one, but I want it to be a good
one. I don't want his life lived without hope. I want his life
lived as if a miracle could happen at any moment.
The nurse came out to say the interview was over. When she
left, I gave her a zucchini.
I ate a quick lunch and headed out the door to do some
errands. Rob and Leah, bless their hearts, agreed to stay
with Don until I came back. They also did the dishes, loaded
the dishwasher, and brought in and folded the laundry that had
been sitting in the dryer since Annie's visit a few days ago.
I went to the airline ticket office and cancelled our trip to
Baltimore, Washington, and Virginia. Dr. Prados had thoughtfully
sent a letter along saying why Don could not travel. At first,
the woman at the United counter said she didn't think we could
get a refund under any circumstances, but then she read the
letter. She told me a relative of hers had recently been
diagnosed with a brain tumor, and the two of us shared sympathy.
Then she refunded the entire amount of the tickets.
I got fitted for a tux for next weekend's concert. I so hope
Don is well enough to see it. Then I headed to Safeway to
get Don's Septra prescription filled. The talk with the
hospice nurse had scared me. I wanted to be sure Don was
on the Septra before the "hospice team" started making any
decisions for us.
Don and I fell asleep on the day bed soon after that.
Then Jessica and Kent came by around 6:00 on their way to
a dinner party. Their visit was brief but pleasant. On
their way out, Kent mentioned that he thought Don felt hot.
I thought it was because he and I had just been outside,
where it was cool. But after supper, I also noticed that Don was
hot. His face looked flushed and he was sweating.
I included the Septra in his evening pill toss.
I hope we haven't started it too late.
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