When I signed up for a road race in Western Massachusetts 10 years ago, I thought I would run 6.2 miles to the finish line with little trouble, just like I usually did. Instead, I careened into the unfamiliar terrain of cancer world.
It began with the St. Patrick’s Race in March, 2003. I was surprised to find that I could barely catch my breath even though I thought I was in good shape. But I pushed on, driven by the belief that if you don’t finish the race, you don’t deserve the T-shirt. It took a little more than an hour, at least 10 minutes longer than usual for me, and I almost fainted when I bent down to remove the timing chip at the finish line.
A 48-year-old divorced mother with three children and a full-time job as a newspaper reporter, I thought I was just run down. I went to my doctor, also a runner, assuming he would prescribe iron pills and give me tips on diet and training. Instead, I learned that I had acute myeloid leukemia, a fast-moving blood cancer that can be fatal if not treated quickly.
I was shocked, then devastated.
I was the model of fitness, a healthy eater who never smoked. My doctor said there was no way of knowing how I got it, unless I was exposed to benzene, a chemical that causes leukemia, or had lived at Love Canal, the Niagara Falls, N.Y., neighborhood famously built on a toxic waste dump. I didn't fall into either of these categories.
My doctor said I would be fine, but later, as I cried big gulping sobs, it was hard to believe.
About a week later, I met with Dr. Daniel J. DeAngelo, my new hematologic oncologist at the Dana-Farber Cancer Institute in Boston, about 90 miles from my home in South Hadley, Mass. He said I would have three rounds of chemotherapy, lasting about a week each at Dana-Farber’s partner hospital, Brigham and Women’s, with rest periods in between at home, culminating in a bone marrow transplant.
I was thrilled when I went to remission afterward. But I still play back what Dr. DeAngelo said at our first meeting: Remission is not cure. After two years, you break out the Champagne. After five, they call you cured.
When 3½ years passed and normalcy wrapped its arms around me, I got another shock. The leukemia was back. I had chemotherapy again, followed by another bone marrow transplant. But after six months, I learned a new term: graft failure. The donor cells had packed up and left, leaving my bone marrow almost empty. The cause was uncertain, and the donor was a good match who agreed to try again. After more chemotherapy, I had transplant No. 3.
Six months later, I relapsed again. By then I had a new doctor, Edwin P. Alyea III. He told me he would understand if I wanted to stop. But I didn’t want to die. I wanted to see my children continue to grow into the lovely adults I knew they would be. I wanted to run another road race, play tennis, and return to work at the newspaper.
This time they used a new chemotherapy regimen, including a drug called Atgam, made from rabbit serum. The nurses called it shake and bake, which is exactly what I did while receiving it intravenously.
The transplant, on Jan. 31, 2009, went smoothly. But a few weeks later, I developed a severe blood infection, went into kidney failure, and lapsed into a coma. One night, it was touch and go. My ex-husband brought my daughter and told my older sons to come quickly and to bring their dark suits.
But somehow I struggled to the surface, confused, scared and unable to speak. My legs were swollen like tree trunks, and I needed two nurses to turn me over. I was hospitalized for 3½ months. Dialysis returned my kidneys to normal, I got countless transfusions, and I learned to walk again, at first needing oxygen just to sit up on the edge of the bed.
After four transplants, my hair has fallen out, grown back, fallen out and grown back more times than I can count. Each time, I was afraid of death, but I had more immediate challenges – 105-degree fevers, vomiting, shakes, diarrhea, head-to-toe rashes and sores in my mouth and throat so severe that I sometimes couldn't eat.
Now I am four years, two months “out,” needing nothing more than frequent check-ups and a bag-full of prescriptions to deal with the side effects of transplant. I am working as a writer, playing tennis and running again. I can almost see the finish line, but I do still fear another recurrence.
I have learned a lot about sickness and survival and about the healthcare system from an insider’s point of view. I have also interviewed many other cancer survivors and healthcare professionals for stories that I have written. I look forward to sharing my observations and insights with Newsmax Health readers in the coming months.
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