Wednesday, June 02, 2004

Day 2 June 2, 2004

Second day of radiation, first day of chemo.

Contrasting cards were waiting in my mail yesterday. One was from the Faith, Hope, and Love card company, sent to me by my sister, Mart. It expresses
perfectly some things I hold true, "God holds infinity in His hand and the answer to every prayer in His heart. Trusting in His love to see you safely through this time of special need." And it had this quote from, Psalms 124.8: "Our help is in the name of the Lord, who made heaven and earth." Amen.

The second card is a Georgia O'Keefe postcard of "Cottonwood Tree in Spring," which is a painting of the explosive energy of spring's rebirth, a painting I've never seen before. The card accompanied some books about beating illness, from a supportive, secular, and sometimes profane former co-worker who makes art glass and who lives in Oregon. Her postcard says, "I hope these books will help you to defeat the ba$tard. Stand fast. Thinking good thoughts for you. Nancy."

I don't resent my cancer, so I haven't begun to call it any derogatory names. At least not yet. (The former champion of "free speech" still lurks in my
personality, ready to break out under stress with a stream of sailor language.)

The cancer is just a little cell of mine that was minding its own business and then one day started to divide without malice or motive. It's just unfortunate that the uncontrolled division of that cell is something that can cause me a lot of pain and possibly death.

Today Annette drove me to the chemo treatment center in Sunnyvale in her
silver
Mustang convertible. I spent from 10:30 to 5 getting IV fluids and
chemotherapy with one drug called
cisplatin.

Annette was perfect company. The day was low key. I discovered that my
nurse
is named Annick, and she's French, from Cannes. Typically for me I kept
practicing my French
on her phrase by phrase as she came in and out off and on all day. After
a couple of hours, she said she was impressed by my accent.

Around two, Annette went out to aptly named La Boulangerie and brought
back
sandwiches. Changes to my taste buds meant that the swirling
pumpernickel/light rye
bread tasted metallic. At other times, we snacked on oranges and
almonds. We tried
watching "Legally Blonde II" on my PowerBook, but the sound
was too low without headphones or external speakers. The nurse moved us
into a
small room with a TV/VCR, and when we asked for what we thought was a
video of the
natural beauty of the Grand Canyon, we found ourselves watching
"Grand Canyon" a recent R rated movie about a guy whose
car breaks down in a ghetto and what happened to him then. I couldn't
handle
the fear, when he was surrounded by a gang playing with his head,
so we gave that up too.

To my surprise, I was able to eat , albeit half of my usual amount
of lunch and dinner. Dare I tempt things by saying there is
no nausea yet?

Before I left for the radiation appointment at the end of the day, I was
trained by a
home care organization's nurse, a Chinese woman, and hooked up with a
fanny pack for 5 days of another chemo drug, 5FU. The treatment center
also gave me steroidal and another type of anti-nausea medication.

Annette commented that she would have been screaming from not being able

to understand the Chinese nurse from the home care agency. I understand
most
accents pretty well. A lot of my coworkers here in CA have been Chinese,
as is
one of my best friends. "Imagine," I said, "the communication breakdown
if
that nurse would be trying to talk to say a patient from Mexico." Mind
boggling.

Communication in this part of the world is severely hampered by the
language
barrier between people who speak English predominantly and people who
come here and speak
mostly to others who share a common tongue and who also much less
frequently attempt to be speaking English to the rest of us.

I told Annette about the Vietnamese choir director at my church who has
been here maybe
five years and whose English is quirky, I think because he usually only
speaks to other Vietnamese. I told him I had cancer three weeks ago and
was offended by what seemed to be his cold reaction. Then at last
Friday's rehearsal, he all of a sudden understood, and became very
friendly
and talkative. Then from what he said, I was even more offended.

"Will you leave me your house?" he said. He had been to my house (and
loved it) because I tried tutoring him so he could pass a class in
English as a second language.
I had given up tutoring him because he wouldn't allow me to teach him
how to
write but instead he tried to start dropping off his essays so I would
rewrite them for him. I refused
on principle to help him get a grade he didn't deserve.
>From then on, he had treated me more and more rudely.

Last Friday, as I stood speechless about his comment about the house,
he continued, "How much could you sell it for?" I tried to explain,
"There is no equity
in the house. I bought it only three years ago and refinanced it three
times.
If I sold it today, even though it's appreciated, I would owe the bank
or
the real estate agent at least $2,000, last time I figured it out." He
obviously
did not understand what I was saying. He then proceeded to launch into a
series of partly comprehensible stories of relatives who died of cancer.

I showed him the name of a hymn I love, which was sung at the
Healing Mass I attended last week, the first time I ever heard it at a
Catholic
Church. It was popularized in the 60s by a folk music group. The song
is called, "How can I keep from singing?" by Robert Lowry.

The song had been identified as a Shaker song, but a search of the
Internet
revealed that it was written by a Baptist preacher and included in a
collection of his hymns
in the songbook Bright Jewels for the Sunday School (New York, 1869).
One day after I heard the hymn last week after years, I wake up and
start singing
it. I want to try to play it on Liberty's music keyboard, so I asked the
choir
director to find me the music.

Sunday, the choir director was nice enough to bring me a copy of the
music he'd located for the hymn
and practice it with me briefly. He said, happily, "I'll play this at
your funeral."

It's not just language that is involved in this annoying set of
interchanges,
it is conflicting cultural expectations. But that's a whole other story.

For the radiation appointment after all that chemo related
stuff was done, we got to the Palo Alto Medical Foundation at 5:30 and
had
to wait about 20 minutes. The receptionist wasn't at the desk when we
walked by, but as we walked to the radiation waiting area, he popped his

head around the corner. As I said to Annette, "He's got more highlights
in his hair
than I do." I said, "You weren't at the desk when we went by." He said,

"That's all right. We've already something-ed the after 5 appointments."
"What's that mean?" I said. "That means you're already checked in."
"Good, thanks." I cannot remember the word I rendered as "something-ed"
but it was an unusual word that slipped right off
his tongue and made no sense to me. And this is from a native speaker
of English. His lapse was more of a jargon-related misuse of the
mother tongue.

They say they are usually very punctual, but for some reason so many
people at this time need the capabilities of the A machine, which I get
treated on,
that the technician is squeezing patients in before the start and after
the end of
his work day to accommodate them all. And so the time pressure is
wreaking havoc with
their punctuality. Fortunately, the waiting room is an extraordinariy
nice place to,
well, wait.

Through sliding glass doors is a garden courtyard, its walls painted
pale ochre,
with green trimmed concrete paving. Fountains are
playing, and since its only access is through the radiation treatment
waiting room, it is a private peaceful space.

The radiation (XRT) technician, Edwin, said today's session went a lot
better. For one
example, I didn't have waffle face when I was done, like I had
yesterday.

Let me explain waffle face, for the uninitiated.
In the first radiation setup session, they molded a mask for me to wear

to keep my head precisely positioned for the radiation. Edwin
has repeated proudly a few times that he is able to direct the radiation
to within a very
small margin (1/16") not like the old days with the cobalt treatment
with
radiation all over the place. The mask is a openwork contraption made
up of (I think)
plastic strips, and when they tighten it down, if you haven't wiggled
into
it exactly right, t can leave your face temporarily looking like a
waffle.

The new machines look like CT scanners. The difference is that to set me
up
for the XRT, they position the back of my head and neck in a molded
form, line me up with some thin green lines of laser light, put in a
mouthguard, and
then tighten the mask down. I thought back
to yesterday to realize that Liberty and Edwin were both diplomatic in
not
mentioning my waffle imprint. I was in my post-radiation introspective
state, and even if I did look in a mirror, I probably wouldn't have
noticed.

The chemo drug didn't affect me, yet. The radiation causes me
to get very introverted. I feel that my body is marshaling all of
its resources. The white blood cells are signaling to each other,
"Hey, fellas, there are multiple burn sit'es in the throat area,
Let's go do some damage control. STAT. Send in the water
delivery helicopters and the guys on the ground with their
foam fire suppressants." All non-essential activities are shut down.

But somehow I can still sit and write when I come home.

Now to close with my favorite hymn of this period of my
life.

How Can I Keep From Singing

(Robert Lowry)

My life goes on in endless song
Above Earth's lamentation
I hear the real though far-off hymn
That hails a new creation

Above the tumult and the strife
I hear its music ringing
It sounds an echo in my soul
How can I keep from singing

What though the tempest loudly roars
I hear the truth it liveth
What though the darkness 'round me close
Songs in the night it giveth

No storm can shake my inmost calm
While to that rock I'm clinging
Since love is Lord of heaven and earth
How can I keep from singing

When tyrants tremble sick with fear
And hear their death knell ringing
When friends rejoice both far and near
How can I keep from singing

My life goes on in endless song
Above earth's lamentation
I hear the real though far-off hymn
That hails a new creation

Lord how can I keep from singing
Oh how can I keep from singing
(Thank you Lord)
(Thank you Lord)


=============================================================

I'm getting a lot of comfort "clinging to the Rock." If we
realize how often the image of God and Christ as our Rock, our shelter,
our
bulwark, is evoked in the Old and New Testament, we can see the fact
that Jesus gave Simon the name which means Rock is
intensely significant. His Church is built "upon this Rock."

Researchers found that in that era, the name Peter had not been used
until Jesus gave that name to Simon.

So I cling to the Rock that is Christ in His Church built upon Petra,
the man formerly known as Simon who became the first Pope.

Here is one more thing I talked with Annette about today as she
drove me home along El Camino Real. I said that us Christians as part of

His Church are Christ on this earth. We are members of His body. We do
His work. He left us with the admonition that whatever we do to the
least of His people, we do to him.

And then I remembered the story about the little boy who was
afraid to go to bed. His religious parents told him he shouldn't be
afraid
because Jesus was with him. He said, "But I want someone with skin on."

So my point to dear Annette was that today she was the major
manifestation for
me of Jesus with skin on. And many of you are being the same for me in
various
other ways, Jesus with skin on. I hope to return all the favors,
similarly. I owe you!

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