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It's not
over - January, 2006
Dear Family,
friends, acquaintances, and
strangers
-who-somehow-read-this:
I will be
flipping through a few pages of
our recent days, but let me
begin with December - which
tosses you back to November and
forward to the closing days of
January. Did you follow that?
 First,
Jim and I hope your holidays
were as wonderful as ours. We
loved having the boys home for a
week and they loved having Santa
spoil them rotten. The house held two powerful indicators of
their presence: a grand mess and
a great surge of sound. Then,
they left us to silent chaos.
My mother came from Anchorage
and baked the most delicious
carrot cake in the world, using
the same recipe as she had for
our wedding cake 25 years
ago. Every day, until every
morsel was gone, I had a small
bit for breakfast and a smidgen
for dessert.
|
 As
we have since 1994, we sat for our annual
family photo by Ben Pearson. We're all wearing new clothes but older
faces (pictures attached). This year we'll have a canvas of Jim and me
to hang with our wedding photography as commemoration of 25 years
together.
The only dampening during the holidays was
a constant pain in my right shoulder. A
few weeks before Christmas, even with one blind eye, I could tell the
kitchen floor was dirty. Well, all right, filthy. So I pulled out the
central vac hose, plugged it in and swept the floor. I was grossed out
by the sucking sound of pistachio shells, escaped M&Ms, and other
unidentifiable food remnants. When I finished, I felt satisfied and
proud for actually accomplishing some manual labor after fairly
sedentary years.
The next day, my right arm hurt like
crazy. The muscles were so tight I could barely lift it. "What a
wimp," I thought. I felt guilty that I had stopped lifting the
one-pound wrist and ankle weights the physical therapist assigned to
me. My arm continued to hurt and then a week later, my shoulder began
to hurt. Badly. Severely. Enough to make me cry and down Oxycodone. Of
course, my doctor insisted on another MRI and CT scan, assuming it was a
torn rotator cuff.
After the last scan, I threw up on the
drive home. Dori, my directionally-challenged volunteer driver,
thoughtfully pulled the car onto the shoulder so I could open the door
and spare her car. "Too many pain pills," I told her.
In an early Update, I spoke of being a
macho woman, unnecessarily suffering from a cracked rib. Well, I threw
up so hard it's likely that I re-cracked the rib. More pain. Another
x-ray.
On Tuesday night, Jan. 9th, Jim
received an e-mail from Dr. Jagasia, my oncologist, with results of the
MRI and CT scan. A 2.8 mm mass is growing in my shoulder bone. It
could be a relapse of the multiple myeloma, it could be an infection, or
GVHD (graft versus host disease), or another form of cancer (which is
not uncommon after bone marrow transplants). Surgery to remove the
tumor was scheduled for the morning of Jan. 19th, with the
doctors telling us the biopsy diagnosis. Then, they will prescribe the
appropriate regimen to take care of the problem.
So, I wait. Again. I feel caged inside a
corral of fear, coyotes howling and scratching on the wooden slats. I
had so hoped that all this stuff was over; the end of blood labs, vital
signs, temperature, urine collection; the end of pain and uncertainty;
the end of a two-year uninvited, unwanted journey; the end of restricted
diets and piles of pills. The end of Updates. But, once again, I wait.
And I write.
Friday, Jan. 20th
As usual in my unusual case, complications
burst out of my body like crocuses in the snow. On Monday night, my
throat hurt - just a bit on the left side. Tuesday morning brought more
pain; every time I swallowed, it felt like lemon juice poured over a
thousand paper cuts. When I woke on Wednesday I immediately knew a trip
to the clinic was necessary. Tests for strep throat were negative;
tests for viral infection were positive. After much consultation, it
was decided that my raw throat would not impede the next day's surgery.
Thursday morning, we were awake long
before the alarm sounded 4:45; by 6:00 we were in the hospital's
admittance office; by 6:30, a debate began between the anesthesiologists
and surgeons and nurses over whether I should or should not have the
surgery. My temperature was high and my throat still felt like shredded
meat. I listened to their very animated ping-ponging conversation,
knowing that I would be the winner/loser. Win - do the surgery and hope
the temperature falls within normal range. Lose - Cancel today's
hullabaloo and wait a week to do this all again. I was thrilled when
surgery was a "go!"
Finally, a dear nurse injected the yummy
go-to-sleep drug through the IV in my arm (which an anesthesiologist had
to insert because the first nurse failed to "get a vein") in the top of
my left hand. If that isn't the story of the last two years, nothing
is. She tried again, but it bled out. That hurt. Now, of course, I
have a garish purple bruise that resembles a fingerless glove
After the sleepy, night-night drug went
through the IV, my hand didn't bother me any more, nor did my sore
throat, not even my shoulder. For a few split seconds, I felt snuggly.
If this were a movie, the screen would
fade to black then slowly brighten to the next scene. I remember waking
in the recovery room and Jim standing by the side of the bed. One look
at his tense face told me the bad news. The surgeon stood at the end of
the bed to deliver the news. "I removed a one and a-half inch of bone,
destroyed by multiple myeloma. We reattached muscles and used bone glue
to keep everything in place. You'll be in pain from the surgery for
just a few days but you won't believe how much better your shoulder will
feel now that the compromised bone is gone."
When the bandages were removed from my
shoulder, it wasn't pretty. When the assistant surgeon first introduced
himself to me, he said he would make a small incision. I asked, "Can
you make is sexy?" He replied, No, I can make it straight."
He's as good as his word. The line is
straight, but a bit crimpled by swelling and black embroider-thread
stitches. The red- yellow-blue bruises make a nice bouquet of pain.
That and my fat lip. The breathing tube must have snagged on the way
down or on the way up; either direction, I have half of Angelina Jolie's
lips. And thank goodness, none of her controversy.
When Jim and I were finally alone, I
cried. The cancer relapsed less than one year after transplant, not the
three or four years promised, or the fifteen to twenty years hoped for.
The doctors are puzzled by the lack of
other cancer symptoms. By the way, vacuuming had nothing to do with the
tumor. The timing of sore muscles and disintegrated bone were
coincidental. This could be just a "pocket" of multiple myeloma,
isolated in one spot in my body, which, now that it has been removed,
can be treated by radiation. Or it could be an indication of a full
relapse.
Go forward with me, now, seeking answers
by going back to Vanderbilt on Thursday, Jan. 26th, where I
spent the busiest day in my life. An appointment at 8:00 with the
thyroid specialist; infectious disease next, followed by blood labs,
which, as usual, were excruciating and nearly impossible to obtain. a
full body scan, an hour wait for a radiologist who never showed up, and,
lastly, my favorite, a bone marrow aspiration. Another relaxing day at
the lovely Spa Vandy. So, again Jimand I wait. We won't have results
from all the tests until next Monday or Tuesday. Whatever it is, total
relapse or a minor setback, we'll tackle it, full of hope and
determination. In advance, thank you for your prayers. We believe in
miracles. And are desperately hoping for one now.
Janice
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