Jeff arrived at the train station in
Yardley as a train pulled up. He ran for
it, believing his train was early (There is no such thing as an early train,
right?). He realized his mistake when
the train arrived at 30th Street Station on the wrong track. He could tell it was not destined for
University City. Oops. He got off the train and boarded the one he
should have taken to begin with and ended up at the Perelman center only a
little bit late.
After his stick, he texted me “All
done.” He snoozed on the ride home. All day I resisted the temptation to call and
see how he was doing because I guessed – correctly it turns out – that he was
going right back to bed. I got home from
work after 5 p.m. and was greeted with, “Guess what time I laid down for my
nap?” He sounded like a little kid
asking me to make a guess but expecting to stump me.
“10:30,” I said. I knew that was what time he’d returned home
from the city.
“Yep. Guess what time I woke up?” he asked, his
tone emitting confidence that he could still shock and amaze me.
“Just now?!” I guessed, alarmed.
“After 4 p.m. I slept through lunch! I would make a good baby, wouldn’t I?”
This marathon nap, miraculously, did
not affect his ability to sleep at night.
He was back in bed around 9 p.m. and dozed solidly through the night.
Tuesday night at Gilda’s Club we had
the opportunity to share the good news that we’d been in contact with Nicole,
Jeff’s donor. Our networking group was
very happy to hear about her and about the transplant experience from the
perspective of the donor – at least so far as we understand it.
A new member of the group, Sam,
prompted introductions - including diagnosis and brief treatment histories. A lot of the conversation involved cancer “war
stories,” whereas last month, with only the regulars in attendance, we hardly
discussed disease. Sam smiled often at
our raucous laughter and our jokes. We
even got our facilitator, Marianne, to admit that we are her favorite group. Lincoln commented that he expected a morose,
sickly bunch of people when he joined Gilda’s Club but that he was happy to
find our group does not fit that description.
In the car on the way home Jeff said, “I think I help to make the group
laugh.” I agreed that laughter is his
particular talent and contribution.
I checked Penn’s website often to
see whether Jeff’s lab results had been posted.
By Wednesday afternoon I was getting concerned that Jeff had heard
nothing, despite our email nudge to Dr. Porter’s office. Late Wednesday afternoon Dr. Allison called
with the disappointing news that his liver counts were doubled what they should
be and that he would have to take four Mycophenolate (Cellcept) pills per day
to keep the GVHD in check. This dosage
is double his original dose. Drs. Porter
and Allison felt that he had tolerated the Cellcept well and increasing his
dosage of Cellcept is preferable to putting him back on steroids. He’ll have to be very careful in the sun and
we probably should familiarize ourselves with the side effects again.
Dr. Allison was apprehensive about
Jeff’s reaction to her instructions. He
took it in stride. Cellcept must be
taken on an empty stomach so it will cramp his style a little bit. He will not be able to eat breakfast early or
snack late at night. Oh, well.
Another area of neuropathy has
developed on his left shoulder. Instead
of the hypersensitivity of his feet and right shoulder, this one is completely
numb to the touch or when water hits it in the shower.
We heard this week that Lois, a member
of Jeff’s Cancer Coterie and a former customer, passed away. She had been in a bad way for a long time and,
thankfully, she suffers no more. Prayers
for her husband, Bob, please, and all who have lost a loved one to cancer.
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