We were entering the month of November and my fourth appointment at Johns Hopkins. I was tired. Very tired. What else is new? My holiday season at the store was coming quickly and as you know, Christmas is the make it or break it time of year for Jewelers. My crew was holding the line and prepared for the holiday rush. Thank God for that. This new drug was making me sluggish. I needed some answers from Dr. Miller.
My appointment would go off as usual. My Dad will take the ride with me again and be my wing man for the day. He didn’t mind. He got to be the first one to see my newest test results and those crabs…OMG! We met with Dr. Miller first as usual and I answered her FDA standard trial questions to the best of my ability. Now, my turn. What is going on? Is this degree of fatigue normal on STI-571? Are my counts improving? Will I be able to work like I need to during the holiday rush or will the fatigue get worse as the trial moves on? Her answers were informative and compassionate. Yes, fatigue is a very normal and specific side effect of the drug. Most, if not all, patients participating in the trial experienced fatigue. Plus, water retention, achy joints and muscle cramps, upset stomach and bowel issues. Pretty much summed it up. Yes, your bloodwork and cellular studies again are trending in the right direction. White Cell count was dropping, PCR test was trending more negative and my neutrophils and Hemoglobin were crashing. Dr. Miller explained that the STI-571 was destroying the Leukemic cells which were of the majority in my marrow. As those cells were depleted, my blood became Neutropenic while new cells were growing back. Fighting infection would be a problem. In addition, the low Hemoglobin was making me very anemic. Hence, the fatigue. And maybe…her answers basically summed up the answer to the last question. It would be very difficult for me to maintain a ten hour day, twenty eight days in a row. No breaks and no mercy. We’ll see how it goes. I will see Dr. Miller one more time before the onslaught and then not again until after the New year.
With the knowledge needed to move on to the next phase of my appointment, it was off to the Phlebotomist and then the Queen of Pain…UGH. Whatever it takes…O’Bricky’s is waiting. This was a positive day. I could see some daylight. Regardless the side effects, the saying goes…”No pain, No gain”. I can only wish that the pain would end someday. That the future was mine. A proverbial light at the end of the tunnel. That the science prevails and I get to see my boys grow up. As repetitive and dramatic as I may sound, I truly hope that you never have to walk in my shoes. Just saying.
Next up: A Pause