So I waited. The average length of time before the results of my PCR blood test were received was about ten days. Always an eternity and a lifetime of contemplation within such a miniscule amount of time when you think about it. Every cancer patient will tell you that waiting on test results, whatever they may be, is agony. I already knew that my white blood cell count was highly elevated. An ominous precursor to a positive outcome to my DNA testing. When my phone rang and I saw that it was Dr Mike’s office, the lump in my throat began to explode. Here we go. As expected, the test was positive. For reasons unknown to my current medical team, my CML had returned. It had been eighteen years since I began taking Gleevec. At approximately nine to ten thousand dollars per month for the prescription, the cost to keep me going and living cancer free so far was around $2,160,000. Imagine that! One drug. Thank goodness for health insurance! Now what? Why the sudden change to my condition? I felt fine. I looked fine. I wasn’t fine. The cancer can escalate very quickly, moving into a phase called a Blast Crisis. A situation that has no return. Dr. Dave had told me nineteen years before that he wasn’t going to let me die. Now he was gone and Dr. Mike had zero answers.
The first course of action was to increase the dosage of Gleevec. Hopefully, that would create a situation where the Leukemia would slow down and perhaps stagnate or actually decrease the white cell count. It would also give Dr. Mike more time to consult with other Oncologists who may have some answers as to why my body would reject the current course of treatment. Most CML patients that rejected or had a poor response to Gleevec usually had that happen within a few months of starting the drug. Not eighteen years later. A conundrum indeed. I would return to his office in three weeks. More bloodwork after increasing my dosage from 400 mg to 600 mg per day, starting immediately.
It was May of 2018. Joe was returning from Canada in a week and Nick working hard in sunny California. My parents were getting ready for another summer with everyone at Long Beach Island. This news would not be welcome by anyone. Too many times, our lives have been turned upside down by the terrible return, again and again, of this crap. It would be our secret. Lori and I would wait until we knew more about the situation before unleashing this beast. For now, I hope that increasing my dosage puts a pause on the white cell count. Fingers crossed!
Next Up: Going Rogue