So my wife mentioned to me that my last few posts have been repetitive. I agree. The period between July of 1999 throughout 2000 had to be one of the most gut wrenching, mentally and physically demanding and heart breaking time of my life. Again. I’m sorry if it just seems like bummer after bummer. It was. Especially after I began injecting the drug Interferon.
Interferon Alpha was the standard treatment for CML, sans a bone marrow transplant, from 1980 to 2000. It was the only drug at the time that had a somewhat positive reaction towards suppressing the cancer. It was no cure for sure but bought precious time for those who would eventually succumb. To be able to become a candidate for the new drug STI- 571-FDA trial in its second phase, you had to have tried the drug Interferon for at least six months with no positive change in the status of your CML.
Dr. Dave was feverishly trying to get me on the list for admittance to the trial. Many others too. My Dad was petitioning business execs, State Senators, you name it to jump on board and make a case for me. Many letters were written and phone calls made. This was crunch time. The hospitals included in the study that was to begin soon were in New York, Houston, Chicago, Baltimore, Seattle, Los Angeles and Boston. Not Philadelphia. It was a mad scramble for life. The last miracle for so many. Including me. But first, before anything, the Interferon injections had to begin. In my last post, my last appointment, I was taught how to use the injection pen. The fat of my stomach or my thigh was the best site to start. Every other day. I quickly became compassionate to the Diabetics of the world. This really sucked. Not only did it really suck to inject yourself, as time went on so did the side effects.
Meanwhile, the results of my bone marrow aspiration, Chimersm and PCR tests were in. The Chimerism showed that my DNA was becoming dominant again over my brothers. This was bad. A full takeover of my own marrow over my donor transplant would accelerate the cancer into what is known as a Blast Crisis. At that point there was no coming back. No cure. No chance. My PCR results were equivalent as well as my marrow biopsy. No good. Disheartening to say the least, this point in my journey was one of the worst. But wait…it just keeps getting worse! The side effects of this drug were awful! I mean terrible! It started with the Nausea. Then the chills. Then the fevers, the mouth sores, the rash, the extreme fatigue and the diarrhea. Relentless.
Month after month through the spring and summer, one month, two months, three months….it didn’t get any better. I was losing weight, strength, hair and hope. And my blood counts? Well, they were climbing at a frenetic pace. 90k…100k…150k. My work. What was that? I could barely get up everyday. I struggled to go into my business every day. I had to be careful of infection too. What was the point of this suffering? Why couldn’t they just let me in the study? I was mentally and physically exhausted beyond the point of all else. You know what though? I was approaching my fourth month…August. Do you think this would stop me from our planned trip to Disney! No Way! Never happen! Nothing was going to stop me from this precious trip with my boys. Especially Interferon.
Next Up: Florida in August