A blood cancer survivor compares her journey to a rollercoaster and describes how she never knows what lies ahead.
I was truly naïve when first diagnosed with my treatable but noncurable cancer. I didn’t realize up close and personal what this meant.
I had several rounds of upper respiratory and urinary tract infections before the diagnosis due to an immune disorder. I would have to take many rounds of antibiotics, but would eventually get over them. I had a number of surgeries ranging from carpal tunnel to ulnar nerve to rotator cuff. After these surgeries, I would have therapy, and there was an end in sight.
However, blood cancer is not like the other problems. I used to love rollercoaster rides as a kid. The anticipation of going up a hill chugging along and not sure what would happen when I went down excited me. The twists and turns and sometimes even being upside down thrilled me. I felt the higher the ascent and the lower the descent, the better the coaster. But in real life, none of this is fun.
I was on oral chemo for several years after finding I had myelodysplastic syndrome (MDS), until the danger of leukemia loomed. I went on Vidaza (azacytidine) shots in the stomach for two years until I began to have rebound effects. I went back to oral chemo until the side effects became too severe, and I lost a lot more of my hearing. I was fortunate to be in remission, and for three years I had weekly shots to keep up my red and white blood counts. Now, another mutation has developed and I am looking at more treatments.
Overall, the positive of this rollercoaster ride has been that new tests and treatments are happening all the time. It is because of my wonderful oncologist, her staff and the other doctors she consults with that I have lived this long. I truly am grateful for the researchers who are constantly working around the clock to find better treatments.
But I do not think I am alone when I say a chronic illness like diabetes, or multiple sclerosis, or a score of other diseases like cancer is hard. There is not a real cure or an end in sight. We are constantly peeking around the corner for the next phase and wonder what the treatment will be. We feel our lives are similar to a rollercoaster, when being alive means going up and down and all around, not knowing where the next hill and valley looms. We also realize we will never get off this endless ride until we pass. It is a huge and difficult path. More than ever we learn to take it all day by day. One of my favorite oncology nurses reminds me weekly that life is “minute by minute.” Once we accept this, it does become easier. So enjoy the very next minute you have!
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