Eighth Trip to the NIH

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!