Sunday, October 3
After I gave Don his eardrops this evening, he tells me, "I'm
afraid of the treatments to come."
I am surprised. I am no longer afraid. I feel awkward now that
he has expressed his fear. How can I convey my fearlessness to
him? He has faced so much, most of it without complaint. Has
something happened to bring the fear to the surface again? Hawaii
was supposed to heal us and I think it did heal me. I feel
a touch of anger that he is afraid again, and then ashamed that
I feel angry.
"I don't want radiation again," he tells me. "I can't stand
the way it makes me feel."
"Whole-brain radiation is unlikely again because you've already
had the maximum life-time dose," I say, trying to be rational.
"But there may be something more focused and local, like gamma-knife."
"Okay," he says, "but no more whole brain."
"No more whole brain. Got it." Kent had told me
about his grandfather who had five brain surgeries in the last
decade of his life. It was Kent's feeling that these helped him
to extend his life from the mid-70's to the late 80's. I wondered
if Don was worried about facing brain surgery again and wanted to
tell him how it seemed to help Kent's grandfather, but I wasn't
sure the notion of survival through multiple craniotomies would
appeal to him. Instead, I said, "Anything else? Any treatment
you'd like to rule out?"
"It's not the time to go into that now."
I realized I had been trying to intellectualize Don's state
of mind by trying to turn it from an emotional context into
an objective context: "Put it down
on a list and we'll talk about it tomorrow."
I was defending my emotions, not facing them. So, who, really, had
gotten over his fears in Hawaii?
I have been reading the online book Beyond the Road's End
by Mary Catherine Fish. She, too, wondered how she could
endure the constant pressure of her husband's cancer. She wrote:
"The process is this: everytime my heart shatters,
there's a new one underneath, slightly different. I wonder if
I'll ever run out of hearts."
Now I understood my transformation in Hawaii. I didn't really
lose my fear of the future, which is still uncertain and potentially
lethal. I didn't lose fear, I gained courage. I know I'll
never run out of hearts. No matter how scarey it gets, no
matter how heart-breaking life is, I will always have a heart,
and it will always be shared with Don.
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Monday, October 4
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Tuesday, October 5
We saw Dr. Peterson at Stanford today.
We arrived ten minutes early and handed over the MRIs, then waited
the usual half hour past our appointment time before we were shown
to an examining room, where we waited another ten minutes. We
both were getting pretty hungry by this time as neither of us had
had lunch.
Before the interview, Don
had his weight, blood pressure, pulse, and temperature checked.
His weight was a surprise: 134 lbs (61 kilos). That's down ten
pounds from a month ago.
When Dr. Peterson saw us, she summarized what she saw on the MRIs:
"The enhancement is the same [as it was on the MRIs just after surgery].
The mass effect is less, meaning there is less pressure caused
by the tumor. The surgical cavity is a bit smaller.
I don't see any growing tumor, although it's hard
to tell between living and dead tumor cells. My suggestion is that
you see either Dr. Prados or myself - one or the other of us -
every month. That way someone can keep an eye on any changes."
Don: My weight is usually between 135 and 145. Why might I be at
the low end now?
Peterson: Radiation suppresses appetite. Weight loss is typical
of other cancers, but not brain tumor. It's helpful to eat
more, but in smaller meals, more frequently.
(I think she was implying that the loss of appetite was
not a sign of tumor activity, as it is in other cancers, but a
side-effect of radiation.)
Lou: I have a list of other questions.
P: Fire away.
L: Dr. McNeil, Dr. Prados's fellow, noticed what she called a
"ditzel" on the MRI near the brain stem. Neither she nor Dr.
Prados could explain it. Do you have any ideas?
P: It could be an artifact of that particular scan.
D: It showed up on the previous scan, too, the one just after surgery.
P: Then it isn't an artifact. Has it changed?
D: No.
P: Then it's not tumor. Next question?
L: What is BCNU? Dr. Prados mentioned it, but he didn't define it.
I thought he may have meant Boron Neutron Capture Therapy, BNCT,
but he said no.
P: No, it isn't. BCNU is a form of nitrosurea chemotherapy. The
generic name for the chemical is Charmastine.
L: I thought it would be ironic if Don were considered for BNCT.
He once parachuted into a nuclear reactor to prevent it from
being built.
D: It was a nuclear power plant, not a reactor. The reactor wasn't
"live" yet.
L: Anyway, I thought it would be ironic if Don went from preventing
a reactor's being built to sticking his head into one.
P: Next question?
L: The radiologist report from the post-operative MRI noted what
might be an AV-malformation near the cerebellum.
D: What?!
L: (To Don) Don't you remember this? (To Peterson) I pointed this out
in the report in our first meeting with you. You said then
that you'd keep track of it. Have you?
P: I'll have to wait till I get the radiologist report from UCSF.
D: I don't like the sound of an AV-malformation.
L: The report then said that's what it might be, but
the radiologist didn't think it important enough to mention in his
final summary.
P: It's probably nothing. An AVM is the least of your worries now.
(This comment would stick in Don's mind as one of the most bizarre
things a doctor has ever said to him. After the trauma
and terror of his hemorrhage in December, it was far from
"the least of his worries." It was, in fact, almost always
on his mind.)
L: It's been a bit of a schlep to take the MRIs from UCSF to here
and back. Do you know how and where we can get them copied?
P: The institution that took them can copy them for you. It'll
be expensive, about $10 a sheet.
L: That's no problem. Last, Dr. McNeil noted a tremor in Don's
right hand. I've noticed his right arm twitches in his sleep.
What might be causing that?
P: Probably the Dilantin. Any effects of the tumor would show up
on his left side, not his right. Any more questions?
L: That's the lot.
P: (To Lou) How are you doing?
L: (Looks at Don, hesitates, fumbles with his notes) Well, it's
been a little wearing, being under constant stress. But I'm seeing
a therapist now and that helps.
P: Good.
Dr. Peterson then told us that Deborah would be leaving and we all
said good-bye to her and thanked her. Apparently, she had been
replacing Dr. Peterson's regular nurse, who has been on maternity
leave.
That evening, after I came home from chorus rehearsal, Don said
he wanted to talk to me. I hadn't eaten dinner yet and as it was
nearly 10:30 PM I was rather hungry. I asked him to talk to me in
the kitchen while I made my dinner.
"I've been thinking about your comment to Dr. Peterson," he said,
"about being under stress. I don't want our relationship to be
a source of stress for you. Your health and well-being are
important to me. In the light of that, I'm wondering if we should
rethink our plans for me moving in with you in February."
I thought this might be the tack he took,
which was why I was reluctant to
answer Dr. Peterson in front of him. I was afraid I might get
angry, translating his concern into an excuse to bail
out of the relationship, as if the solution to my problem was
to remove himself from the equation. The old "I love you/Good-bye"
syndrome. But I wasn't angry. I
could tell he was genuinely concerned for me, not for himself.
I just had to find a way to tell him how I felt.
"I know you've never been married," I said, "but I know you know
how the oath goes: 'for better or for worse, in sickness and in
health.' It doesn't say, 'through bad times and illness, skipping
and laughing all the way.'"
He laughed, seeing my point. "But if it's causing you stress..."
he began.
"There is a lot of stress, but it's not caused by you and it's
not caused by our relationship. It isn't even caused by your
illness. It's the stress of being ever-vigilant. I'm stuck in
permanent crisis mode and I don't know how to get out
of it. It's something I've got to solve."
"It's something we've got to solve."
I love this man.
He asked me for some details of what was causing me stress.
"Well, it's not the little things, like checking to see that doors
are closed or lights turned off. That's really something more like
what you would call a mindfulness practice: noticing small things
that keep life orderly. But I've had
problems dealing with stress in all my relationships - with Sara
and especially with Bob. But I also am bad with it outside of
relationships. I developed tachycardia while working for Sybase
and I wasn't in any relationship then."
"Are there things you can do to help releive the stress?"
"It's the main thing I'll be talking to my therapist about
tomorrow."
"Maybe it would be a good idea for you to get some
time away from me."
"It's not you. I know you have a family history of the person you
care the most about blaming you for their health problems, and
I don't want you to feel that way about me."
"I don't. But maybe you need some time off from your role as
guardian. How about that monastary you go to, near Big Sur?"
"That's an excellent idea!" I told him.
We hugged for a while there in the kitchen while my dinner rotated
and beeped in the microwave.
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Wednesday, October 6
Today, Don left for The City in the morning. I did not get out of
bed to help him or remind him of the things he needed to take with
him, other than to point sleepily at the bottle of eardrops. The
rest he did himself: fixing his breakfast, getting dressed (no,
I didn't check for matching socks or inverted underwear; I kept
my eyes shut), getting his stuff together. He kissed me before he
left and told me he would call when he was on his way home. Then
he put the squeezable brain on the bedside table where it could
watch over me, and he left the bedroom.
I lay there, listening. It was my first day of practicing
non-vigilance, and it was harder
than I thought. As soon as I heard him leave the house, I
was wide awake. I opened the shades in our bedroom a crack so
I could see if he was really walking down the street. After he
passed, I lay awake, watching the clock and listening for the
sound of the next north-bound train. When I heard it, I judged he
had had just enough time to walk to the station. I went back to
sleep.
Don returned earlier than usual from The City, very worn out.
We spent some time setting up the mail and Internet browser
applications on his computer so he could
use Glyphic's ISDN line to work at home.
We got it partially working, connecting his browser to the ISDN, and
Don stayed up until 11:30 PM putting together some material for
his MediaWatch grant. But we still had to use Microsoft's
horrible Outlook program to compose and send the mail, and it
went out over modem, not ISDN, so it was painfully slow.
I stayed up after Don went to bed trying to get ISDN mail to work.
Finally, around 1:30 AM, I had partial success: Don could receive
mail via the ISDN line, but still had
to use the modem to send mail. Nevertheless, I felt elated.
We were that much closer to setting up Don's home office, a goal
I had been trying to achieve since February. I crept
into bed as quietly as I could.
Don was breathing very regularly and easily. With each
breath he took, I sang a little prayer of thanksgiving.
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Thursday, October 7
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Friday, October 8
I drove Don to downtown Mountain View when I went in to work this
morning. It was his plan to go to the post office then catch
the train to The City to do some research for WebMD. The night
before, we had finally succeeded in getting his out-going mail
to use the ISDN line. Our success was confirmed when Mark called
me this morning to ask me who "Vivekan" was and why he was using
Glyphic's mail server. When I told him our plans, he said he would
be happy to help set up Internet services for Don to use at home.
On our way to the ATM outside of Glyphic World Headquarters, I
noticed Don wasn't wearing his hat. Although there were signs
that some of his hair was coming back in peach fuzz and stubble
form, he was still mostly bald and it was a sunny day. "Where's
your hat?" I asked him.
"Uh-oh," he said. "Left it at home. Well, I'll just walk back
and get it before getting on the train."
This would be a two-mile round trip, but I thought it
would be presumptuous to mention it.
"Your memory has seemed much better lately," I said, "so
I've stopped saying my litany."
"Litany?"
"You know,
'Have you got your hat? your wallet? your cell-phone? your keys?'"
"Ooops."
"What?"
"Can't go back for my hat."
"Why not?"
"Forgot my keys."
I think perhaps I've relaxed my vigilance a little too much. Time
to restart the litany. "Do you know where they are?" I asked.
"Yep." he said. "On top of my hat."
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Saturday, October 9
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