I’d only been home one week from Oct.’s visit to the NIH, when
pain assailed me once again. It started
small, but became great …and dreadful.
Very different from the joint pain I’d experienced early in the trial, I
didn’t realize it was from the same source.
It began in the right shoulder, then moved to the neck, from there to
the left shoulder, back and forth between all three, then encompassed all three
simultaneously, growing ever more intense day by day. By the time Ethan, our PA son, came for a
visit, I was ready to heed his advice to call the NIH docs. I emailed Dr. F. on Sunday, the 11th of Nov.,
who promptly called and gave me permission to start a course of
Prednisone. That night I couldn’t even
lie down to sleep. I spent a miserable
day, night, and day, sitting upright to try to keep my right side from hurting
too badly. This stubborn pain was
spreading, I was suffering from shortness of breath, and acid reflux from all
the pain meds I was gulping down. I
asked my good home teacher for a priesthood blessing to help with the pain and
with my upcoming travel concerns. Kirt
came over with Chris Coltrin on Tuesday evening, and I began feeling
improvement by Wednesday morning.
Thursday, my friend Karen flew
with me to Bethesda for my appointment the next day.
From the talk on gratitude I gave last Sunday, here’s what
happened when we landed at Dulles We’re always pressed for time when we land, and have to
hustle to catch the free shuttle to the NIH from the airport. I’d been having some significant side effects lately and didn’t feel able to
zip around as fast as I thought I’d need to, so I requested to
be met with a wheel chair for more rapid transport. There was a little mix-up about it which delayed us a few minutes, but all was
straightened out and we were on our way, but not quite quickly enough to my
mind. I explained our dilemma to the lady who was leisurely
propelling the wheel chair through the terminal, that we had a shuttle to
catch or we’d have to wait 2 hours for the next one. No change in speed. Next, I sat up, straight and tall in the saddle, and
reluctantly said, “Faster, faster!” No
change. Then I ask Karen if she would go
ahead and call the NIH and let them know we were in the airport, and have them tell the
driver to wait for us. Good,
they said they’d do it. Another couple
of minutes fly by as we trundle slowly along, and then I ask, “What time is it?” Followed in another
minute or two by “How much
farther?? And finally I revert to the
ever-popular childhood query and ask
“Are we there yet?” A few bars of
“Here comes the oxcart, oh, how slow!” play in my mind, and then I get the idea to rummage around in my purse hoping that the pusher lady will
notice and realize that a tip will be forthcoming when we arrive.
I decide on $10 if we make the shuttle on time, but only $5 if we don’t, and that’s mostly for putting up with
my, um, encouragement. Good
news, we made it! We had a little
gratitude fest right then and there.
Karen got in on it too, because she even handed the bus driver a tip for waiting those extra few minutes for
us.”
I was able to get my labs drawn that afternoon upon arrival
at the NIH, which meant results would be available by 9 o’clock clinic Time, and
we wouldn’t have to hurry as much the next morning. Labs looked good with WBC down to 19K; ALC
down to 14.8; platelets up at 365K; and HGB slipping a tad to 11.2. That good old C-reactive protein reading
which had been normal last month told the story of my pain from the
inflammatory response to the Ibrutinib, it was way way up to 69.8! Everything
went perfectly, and I thank Karen for traveling with me! Next visit is in two weeks. Colin and Macey will be with me for the last
trip of the year, which will include a CT scan, core needle biopsy of a lymph
node, and a bone marrow biopsy. Boo!
