So many thoughts overwhelmed me at this time. My mind was running rampant with thoughts of what if and where do I go now? What could possibly be going on with my cancer. Why after 18 years would my drug stop working and my Leukemia return? I was keeping this between Lori and I. Figure out the story here and handle it.
My next appointment with Dr. Mike was this week and just about every free minute I had was spent emotionally and mentally preparing for the next move. I’m sure Dr. Mike had done his due diligence and he would be prepared to deliver the goods. But first, to the Phlebotomist to draw another gallon of blood to redo the CBC and PCR test, hoping for a miracle. Would the extra daily dose of gleevec do the job? We shall see. Waiting in an exam room was usually a relaxing respite for me. Lay back on the exam table, usually get in a twenty minute snooze before somebody showed up. Could be a nurse checking in, a Doc saying Hi, an army of Oncology Residents doing rounds and asking a million questions. This time wasn’t as routine when in the next minute you could be hit in the face with a baseball bat. Rhetorically. Figuratively. The reality of a cancer diagnosis pales to the introduction of relapse number one, then two, then three. The mental toll is exacerbated exponentially as each return of your cancer just hammers you.
Dr. Mike entered the room after about 30 minutes with his usual stoic demeanor. So soft-spoken, he was not very excitable. His delivery was a basically monotone word salad of technical, medically charged explanation of your circumstance and diagnoses. In layman’s terms….you’re screwed. Yes, I was. The increase in my medication from 400 to 600 mg a day had done little to stop the increase in my blood counts. They were still trending higher, but not as quickly as before. Dr. Mike said that we would now go even higher in my daily dosage to 800 mg. At that point life becomes more uncomfortable. From 400 mg to 600 mg, not too bad. From 600 to 800 mg., enter the nasty side effects. Our meeting, adjourned for two weeks, I left the hospital and thought to myself…” I’m going rogue” ! Not one to sit back and wait, I knew that I needed to act. Quickly!
When I arrived home, I immediatly went to my computer and found the email contact for Dr. Brian Druker. Dr. Druker was the main creator of Gleevec and probably the world’s most informative expert on the drug. He would know what to do with my situation and take point on the case. I just needed to email him and await a response. His main practice and research facility was located in Portland, Oregon. Dr. Druker informed me many years prior, that since I had participated in the FDA Gleevec trial in 2000, if at any time I would need consultation or help with my condition that he would just be an email away. This was that time. Email written, conundrum explained, lack of direction and answer reiterated, I would await his response. I was going rogue. Taking the fight to my CML. I couldn’t wait for Dr. Mike to figure it out anymore. Let’s Gooo!
Next Up: Keeping His Promise