Living with Chronic Myelogenous Leukemia is nothing short of a roller coaster ride; it is full of ups and downs. Most days I meet these challenges with a smile on my face, a stomp in my step and a bit of stubbornness in my attitude.
Yesterday, there were a few tears thrown into the mix; I received my latest PCR result of .28% on the International Scale, which was a huge disappointment after having a .134% results two months prior. This year has proved to be a bit of a challenge, in the PCR department.
I started out the year with two negative PCR’s which led to a decrease in the dose of Sprycel, all the way down to 70mg. The main reason for the decrease in medication was due to the increased pain that I was constantly in. The pain was so severe (back pain and peripheral neuropathy in my feet, hands and legs) that I was sent for MRI’s, Nerve Conduction Studies, Electromyograms and a plethora of blood work; all of these tests were negative, thus correlating the pain to Sprycel.
Oddly enough the pain continued regardless of the decrease in medication; the only thing that did not remain, was my negative PCR. My PCR literally jumped from a negative state to .432%; not only was I shocked, I felt terribly deflated. I felt as though I had failed my body once again. I felt as though I had once again lost hold of the grip, which I had on CML.
I believe that after three and a half years, the realization that CML is just an unpredictable cancer has finally sunk in. I believe that I am at the point of acceptance; I accept that fact that I cannot control this disease; I can only follow the advice of my oncologist and pray for good results. I can eat well, exercise, get enough rest, take my medication, pray and then deal with the PCR results, as they come.
I cannot become impatient, or dwell on the uphill battles; I must enjoy the ride, for it is the ride that I am on, even though I did not choose to purchase the ticket! I must allow myself moments of sadness and frustration from time to time, as this is only normal, but once those moments pass, I must pick up my boots straps and get back in the front car of that coaster, and hang on for the ride!
Suck it, CML! You may mess with my blood, but you shall not mess with my soul!