The trial nurse at John’s Hopkins told me to keep my STI-571 pills in the refrigerator. Interesting I thought, but whatever means necessary. Who was I to question her. Cold pills it is. Also, I would take one 400 mg. pill everyday. My choice would be to take it before bedtime. At this point, because I was enrolled in the FDA trial, the drug would be given to me at no cost. This would last for the term of the trial. The regular price of STI-571 would be approximately ten thousand dollars per month when and if approved for regular use. A tremendous amount of money. The cost of saving lives I guess.
I began taking the drug as prescribed and hoped for the best. I knew that the effects on my Leukemia would not be immediate. I was beginning to feel some relief after discontinuing the Interferon injections. The side effects so severe that they had basically crippled me and severely affected my quality of life. The change from injections to pills was so sweet. After two weeks, I will be heading down I95 to Baltimore for my second appointment. Will there be any significant change in my blood? Let’s hope so.
We scheduled my appointment for a little later in the morning at JHU hospital so an overnight stay wouldn’t be necessary. My dad picked me up in the morning and we headed south for what I hoped would be a positive experience. Other than the fact that I would be receiving another Bone Marrow aspiration today, a reduction even ever so slightly in my WBC count would be so encouraging. If not, well, that would really suck. The traffic was heavy as usual along the 95 corridor but we made my appointment without any issue. Dr. Miller met with us first and we discussed any issues that I might be having with the drug. So far, so good. The residual effects of the Interferon were still present so there was no real difference in how I had been feeling. She also was welcoming any change in my status that was positive after our last meeting. She said that the bloodwork and aspiration results taken during my first visit confirmed that my Leukemia was progressing rapidly. She was anxious to complete the same studies again. So was I. Imagine, I actually was looking forward to another Bone Marrow aspiration. Mmm… not really. Let’s go.
JHU hospital had their own department for Bone Marrow Aspiration procedures. They did so many, I assumed, that it was necessary to facilitate the patients with this luxury. And relieve the doctors from having to perform them. After a quick trip to the phlebotomist chair, we made our way to the Aspiration department. The tech that was to perform my aspiration was a very tall woman with short platinum Grey colored hair. Although I don’t remember her name, we became well acquainted after the many times that I laid on her table. I always thought about how she felt just constantly inflicting pain on people everyday. What a job! She was good though. A real professional. Her experience made it somewhat easier, knowing that she really knew her stuff. Compassionate also. Here we go again. You know the routine. It never changes.
After a couple of hours, my visit was complete and the anxious period would begin. Now we would wait for the call from Dr. Miller for the results. Usually about ten days. Just before we would be heading back down again to repeat the process. Limping to the car, I knew that the pain in my back would be an afterthought. The pain in my mouth would be taking over as soon as I began consuming the Old Bay smothered crabs that were waiting for me at O’Bricky’s. The sores, still in my mouth from the Interferon, were no match for the taste of those delectable crustaceans. The taste was worth the pain. Just like the Aspiration today. You weigh the good with the bad. Crabs are good. Leukemia bad. Just get me the results…Please.
Next up: Results, Crabs and Lor’s Turn