May 26, 2002, New York
I'm trying something new today. For the first time, I'm dictating
my journal entry. My brother is kindly typing in these words
because I'm too tired right now to sit up and write.
This past week I was supposed to be getting cancer treatment
in Chicago. So much for the best-laid plans. As it turns out,
I was holed up for nine days at Beth Israel Hospital in New
York, fighting off a variety of cancer-related maladies--shortness
of breath, abdominal pain, anemia, bowel obstruction, and pneumonia.
I just got released yesterday.
landed at Beth Israel out of sheer desperation. After leaving
Memorial Sloan-Kettering two weeks ago, I realized I needed
a new team of local doctors who would be willing to complement
my efforts in Chicago. Through the recommendation of a friend,
I found such a group at Beth Israel.
But just when I was ready to implement my plan, my energy
level began to sag. I started feeling shorter and shorter of
breath. Finally, it reached the point where it became a major
undertaking just to walk from my bedroom to the living room.
I realized I needed to check myself back in to the hospital,
After a series of tests, the doctors at Beth Israel came to
many of the same conclusions as those at Sloan-Kettering--namely,
that I had an inoperable bowel obstruction and would need to
receive all of my nutrition intravenously. The doctors at Beth
Israel, like those in Chicago, agreed that I should begin an
intravenous feeding program called TPN (total parenteral nutrition).
It bypasses my whole gastrointenstinal system and essentially
pumps baby formula into my veins around the clock. (Sloan-Kettering
had been unwilling to give me TPN in the belief that it simply
fed the cancer.) I now carry a ten-pound bag of TPN in a backpack
as my constant companion; where I go, it goes.
The hope is that TPN will rebuild my strength to the point
where I can withstand a more stringent regiment of chemotherapy.
If the chemotherapy works, it will degrade the tumors enough
to clear the bowel obstruction and allow me to resume normal
eating. That's the hope. Keep your fingers crossed.
I was changing out of my hospital gown before leaving, I
stood before the mirror and looked at the state of my body.
Even I could hardly recognize myself. Where before I retained
some weight in my face, all of that was now gone. My face looks
skeletal. My cheeks are hollow. My eyes look sunken. My jaw-line
is taut. My neck is scrawny like a turkey's. My adam's apple
torso looks not unlike those pictures you see of the severly
malnourished--basically, a collection of bones held together
by a tight wrapping of skin. You can see clear definition of
every rib. My belly is round and hard and sticks out like a
small basketball. My hips and pelvis have no meat on them.
My ass has lost all its fat, to the point where it hurts to
sit for a prolonged period because I'm sitting straight on
my bones. My legs are bony as well, with knobby knees and no
calves, and my feet are swollen.
visage brought to mind a famous writing by the 15th century
zen master Ikkyu, a poem/essay called "Skeletons":
Who will not end up as a skeleton?... Have a good look--stop
the breath, peel off the skin, and everybody ends up looking
the same. No matter how long you live, the result is not altered.
I think of all that my body has gone through over the last
year, it's no wonder it looks the way it does.
a huge scar across my abdomen, with six or so smaller scars
surrounding it from various other procedures. I've got a port
lodged under my skin near my collarbone that connects directly
to a vein in my neck for the TPN. I've been stuck with more
needles than I can possibly remember. I've had all kinds of
instruments crammed down my throat, jammed up my nose, stuck
in my belly, and pushed up my rectum. I've been zapped with
radiation from X-rays and swallowed cupfuls of barium and "contrast
solutions" for CT scans. I've had all manner of toxins
poured into my veins and belly. Not to mention a major organ
ressected and my whole gastrointestinal tract rejiggered.
My mom tried to get me to turn away from looking anymore,
but I wasn't saddened by what I saw. I love my body. Now more
than ever. I love everything it has left. I love everything
it's given me--every sensation, experience, presence, intimacy--every
movement through time. I've had a great ride in this body and
I'm greedy--yes, greedy--for so much more. I want to grow old
together with my wife. I want to help my children grow. I want
to hold my grandchildren. And I want to do it in this body,
this body that's given me so much fulfillment already.
saddens me to think of all those people in the world who
for whatever reason dislike their bodies,
people who don't
realize the precious gift they've been given. "If you've
got your health, you've got your wealth," my old colleague
used to say. Gratitude can start in the simplest of ways.
I don't know if the TPN program will work. I don't know whether
I'll get to Chicago. But I'm going to try. My body may look
frail, but my eyes, I think, look quite alive. And as long
as I have a voice in this world, I'm going to use it. My spirit
wants to ascend.
the martial arts adage goes, "Seven times down, eight
times up." Once again, I have to pick myself off the mat.
C'mon, body, let's start over. Baby steps and patience. We
gotta do it.