Fourth Trip to the NIH

July has been the busiest month I’ve had in years, featuring a wonderful family reunion in Garden City, UT, at Bear Lake, sandwiched in between two trips to the NIH in MD.  I’m hoping kind, and better-prepared-than-we-were, family members will supply a few fun reunion pictures for me to share in another post.  But this post will consist of words alone.

Originally, the schedule for Wednesday, the 25^th, included only a morning blood draw on the 3^rd floor and a one o’clock 7^th floor CLL clinic visit.  In clinic, patients see a PA first, followed by Dr. Farooqui, the principal investigator for the clinical trial, or another member of the CLL team.  I showed Janet, the PA, a painful rash I’d recently developed, and she said it was exactly the same as another patient’s experience.  First had come joint pain, which we’d discussed on my previous visit, then a rash had appeared a few weeks later.  It was good to know I was not alone.  I had worried I might be thought to be a whiner, or a hypochondriac, or some other obnoxious type.  After a lengthy wait, like over 2 hours, in the waiting room, I saw Dr. Farooqui and Dr. Wiestner, who prescribed Prednisone.  My C-reactive-protein had risen from 11.5 2 weeks ago, to 50, which indicated increasing acute inflammation.  They wanted me to consult with a dermatologist and a rheumatologist before beginning the Prednisone though.  So, of course, being the good patient that I am trying to be, I complied. 

The dermatologist, located way up on the 13^th floor, took a punch biopsy of one of the red, hot, sore-to-the-touch, mosquito-bite-like bumps, put in a couple of sutures, and sent me on my way.  Next stop was back to the day hospital on the 3^rd floor for more bloodwork.  Then down to the pharmacy on the 1^st floor, including another long wait, to pick up my meds for the next month.  People have been thinking I go back to the NIH for treatment.  No, I go there for monitoring..  The treatment is the 3 capsules I take daily at home, or abroad.  After the pharmacy, we went over to talk to the travel office about booking the flight for our next visit on Aug. 22^nd.  It was now almost 5:30, and we’d been there since about 8:40.  We sprinted down the long hallway to catch the 5:30 shuttle, and I thought I heard a bit of laughter as we whizzed past several offices.  Flushed and breathless, we made it on time, and disembarked at a Mexican restaurant a friend had recommended.  After a nice dinner of chicken enchiladas, we walked the short distance to our hotel.  Brianna then walked over to Safeway to get a few snacks for our trip home.  We had less time than usual between flights, and didn’t want to starve if we weren’t able to get a quick meal at the airport.  Almonds and organic Fig Newtons for me, pistachios and persimmons for Brianna.

My appointment with the rheumatologist was at 10am, but we decided to arrive early because we wanted to make the 11:30 shuttle to the airport.  We walked into the 9^th floor clinic at about 9:20.  I told them about our desire to make the shuttle, and they got me into a nurse for vitals right away.  We were speaking with a first-year rheumatology fellow by 9:35, which is a good thing, because she was full of questions.  When she was finished, she went to consult with her attending, and said she would return with him.  We waited, and waited, and waited, becoming more and more restless and anxious about making the shuttle on time.  To ease the tension, I sang a little of my “Five Pounds of Possum” song I’d performed for our family reunion talent show.  Finally, 4 or 5 doctors came in and spoke with me.  They said that this type of medication is a new field and we are all learning together.  Perhaps the inflammation is caused by cytokines, a kind of hormone or signaling molecule, talking to other cells, alerting them that the medication is destroying the unwanted cells.  I thought one of the docs was onto something important when he suggested that it may not be the joints that are inflamed, but it may be these small raised bumps on the surface of the joints that have been causing so much pain.  I am eager to hear what they say about this on my next visit.

Next, Brianna and I rushed around trying to get someone to de-access my port.  No, the 9^th floor staff said to go to the 7^th floor, where we worried they would send us to the 3^rd floor.  It was now well after 11 o’clock, and we still had a few loose ends to tie up before 11:30.  Yay, the 7thfloor nurse de-accessed the port for me!  Then we hurried down to the 1^st floor to turn in the receipt for the hotel stay, and receive partial reimbursement.  No time for a stop at the bathroom, just time to grab our luggage from the locker, and for another sprint down the same long hallway to catch that shuttle.  And again, we made it!  Our first flight was delayed, and we thought we’d miss our connection.  Thankfully, it was also delayed, and we arrived home only an hour late, at about 9:30pm.  Thank you, NIH.  Thank you, Brianna. Thank you, United Airlines.