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I’d Rather Have Won the Powerball: Chris’ Story

Several years ago I was diagnosed with Waldenstrom’s Macroglobulinemia (a mouthful), a rare blood cancer in the lymphoma family, closely related to leukemia. Chances of getting it were estimated to be about 0.03/1,000,000. There is no known cure. With those odds, I’d rather have won the Powerball!

Though I was told that the cancer was indolent, or slow-growing, my expected survival was, at that time, estimated to be five years, give or take.

I’m not sure whether I received that as good news or bad news. It just became the fact of life for me, which I chose, for the most part, to ignore. My family, after all, was riddled with all sorts of cancer, and as much as this may sound strange, I thought I could live with it. My grandmother died from pancreatic cancer; my dad, lymphoma; and my mother—still with us at 80 years of age—has survived both Non-Hodgkin lymphoma and endometrial cancer.

This thought, though, did change when my younger sister was diagnosed with ovarian cancer. She had an 18-year-old son, leaving for college out of state, and a daughter, only four years old at the time of diagnosis. She suffered immensely, and had all the telltale signs of a cancer patient; losing her hair, losing weight, constantly sick to her stomach, and more. She suffered, after trying every possible treatment, for nearly four years, far longer than most. She died two years ago last June. If I could have changed places with her, I would have. I couldn’t.

How does this affect my story, you ask?

Because my cancer is indolent, and the treatment more modern, biologics like Rituxan and Velcade were used in my treatment plan. I did not lose weight; on the contrary, the steroids I received to help me tolerate my chemo added nearly 50 pounds to my already-somewhat-round waistline, weight I still have with me today. My hair has thinned, naturally, and I never lost hair due to treatment. I did however, suffer a side effect, known as PN, or peripheral neuropathy, something any diabetic would tell you is not fun.

Because time has elapsed from my initial diagnosis until now–and I’m still alive–people no longer look at me as a “cancer patient.” The story has grown “old,” and no longer topical. At work, I chose to share my story early on, as I knew I would be missing time for chemo several times a week, for several months. I had the support of my coworkers, but, as with most things, time passes, and people forget. The good news is that I must look good, if not fatter from the treatment, and no one sees me any longer as an active cancer patient, which I still am.

However, now my need for time off has become bothersome, and I often think that some of my coworkers wonder when I will die, and get it over with.

Statistically speaking, the longer I live, the longer I’m likely to live. This is good, no? I receive excellent treatment from the staff at two hospitals. I hope that more strides are made in my very rare disease, and that the years will keep adding up until I die of “natural” causes, with my cancer being a “chronic” condition and no longer a death sentence.

So what is moral of this story?

Take charge of your illness, surround yourself with those who stick with you for the long haul, and support you in good times and bad. Don’t be afraid to ask for help, and be grateful for what you receive. Educate yourself and your family. Do not fear, but fight.

Let your life become that shining beacon, an example for others who will follow. One day “cure” may replace the word “terminal.”