Stuck on Third Base

Dr. Brian Koffman refers to the current state of CLL/SLL medical research as being “stuck on third base” – almost there, but no home run yet. He is so right. A cure is around the corner and all of us patients are hopeful that it comes during our lifetime.

The last month has been very stressful for me. I have been fighting a respiratory infection and was off ibrutinib until I could get several heart tests and the results. Remember that a patient died in the trial because his heart stopped working. My NIH doctors wanted to be safe with me, since I had reported heart fluttering. If my heart is healthy, I will go back on the drug. If not, I will be on a Plan B – finding another clinical trial to help my leukemia.

My tests and appointments were scheduled. My last heart appointment had been moved from November 10^th to November 7^th. The most frustrating part was trying to move the tests and appointments up so that I would not be off the drug too long.

Then last Thursday I was contacted by NIH only to find that the clinical protocol had changed and that the drug company did not want any participants to be off the drug more than 28 days or they would be off the ibrutinib clinical trial. November 4^th was my D-Day. I spent several hours on the phone talking to the scheduling desk, the GP scheduler, the cardiology scheduler, etc. and leaving email messages with cardiologists, administrative assistants, etc. I was willing to cancel my existing appointments and go to ANY doctor at ANY facility in the Valley as long as I could get the results by the deadline.

Finally, an appointment opened up for today – a day after my ECHO test and two days after my Holter Test. I was told by the scheduling desk that this day may not work since the analysis is done one to two-weeks after the tests. I put on my Dragon Lady hat and told the scheduler that this appointment will have to work, and the cardiologist will need to take only one day to review the results, and please plug my name in the slot. I then contacted the doctor’s administrative assistant and explained my dilemma. She said the doctor would be able to read the test in one day.

When I saw the technicians for the heart tests, I got their names and asked them to please make sure the doctor had the results by Wednesday evening, and that I would be calling if there was a problem. I thanked them profusely for making this happen. They also checked the notes the doctor wrote and his notes indicated that I needed the appointments in one to two weeks. Apparently the schedulers were not following the doctor’s orders because they scheduled me almost a month out.

Long story short:

My heart is healthy. I thanked the cardiologist with the biggest smile on my face. He even got a hug.

I am now stuck on third base again with ibrutinib and I am so grateful.  Everything in life is a matter of perception. Third base is certainly better than being struck out.

I did not follow Tom Hanks advice in his 1992 movie “A League of Their Own”, “There’s no crying in baseball!” I shed a few tears of joy on my drive home.

As a patient, I am forever grateful for the gift of borrowed time I have received through the use of ibrutinib as my kinase inhibitor of choice.

-- Dr. La Verne