Third Trip to the NIH

This bronze sculpture, by Azriel Awret, of a young woman drinking water from her cupped hands echoes the Biblical reference of drinking from the healing waters of Bethesda. In Aramaic, “beth hesda” means “house of mercy.” According to tradition, an angel moved the waters and healed the sick at the Pool of Bethesda in Jerusalem. As recorded in John 5:1-9, it was at the Pool of Bethesda that Jesus healed a lame man.

On day 3 of the clinical trial, the word trial began to take on new meaning for me.  Joint pain became an issue.  I was given several contact numbers if I should need them, so I called back to the NIH to speak with someone on Thursday, 6/28, which was the hardest day to that point.  The hematologist fellow didn’t believe the pain was related to Ibrutinib, and recommended I call my local doctor.  On Friday, I did so, but he wasn’t helpful either, sending the message to me through his nurse to go back to the NIH for assistance.  Discouraging, to say the least!  On Saturday, a letter arrived informing all patients of the local doc that as of Sept. 1^st, he will no longer be practicing in the clinic I usually see him in.  Good news, I will be changing docs!  Until then, the good people at the NIH are taking steps to improve their working rapport with him.  I need to have labs drawn here in Boise on Aug. 8^th to be faxed back to the NIH, so I need the cooperation of the loco onc till then.  Oh, did I say loco?  I meant local!

Here I am at day 17 on the Ibrutinib clinical trial, just back from another NIH visit on July 11^th.  Lymph nodes and the absolute lymphocyte count continue to go down, down, down, which is very good.  But a funny thing happened on the way to Bethesda.  Brianna and I were in the bathroom in Chicago, and she happened to look at me in the mirror, then say, “You are pale.”  Immediately, I felt weak.  And that feeling stayed with me until I received 2 units of packed red blood cells.  Hemoglobin had dropped from 9.2 to 7.9, and I could definitely tell it.  A big thank you to all who donate blood products for patients in need!  With our family reunion extravaganza being held in Bear Lake next week, I was certainly one of the many grateful recipients this time.  

As for the joint pain, the docs told me that a few other patients are having similar issues, and so further testing will be done if it doesn’t resolve soon, and I’ll have a consultation with a rheumatologist on my next visit, if needed.  I was advised to bump up the Aleve dosage for pain relief in the short-term, and to call for a prescription if it caused me to develop any stomach issues.  So far, so good.  More Aleve is keeping me more comfortable.

Since a daily stipend of $75 is now available to me from the NIH during our trips, we upgraded from the pleasant, but not as convenient, apartment to a hotel right on the NIH shuttle route.  No more catching buses and taxis will be necessary.  And a nice breakfast is included at the hotel.  Sweet!  Only two more trips with Brianna, and then she will be grounded, awaiting the birth of her little baby boy.