Confronting Life or Death at A Young Age

Audio
Ibby Caputo, then 26, describes her experience using a chemotherapy tree to treat acute myelogenous leukemia, a fast-growing cancer of the blood and bone marrow.Audio and photos courtesy Ibby Caputo
By Ibby Caputo
Special to The Washington Post
Tuesday, February 24, 2009

It was in the summer of 2007, a month after I turned 26, that I received a diagnosis of acute myelogenous leukemia, a fast-growing cancer of the blood and bone marrow. Without treatment, the doctors told me, I had six weeks to live. With treatment, I was still going to have a hard fight -- a fight I took on, but not without reservations. Three months into it, after three back-to-back rounds of chemotherapy had failed to put me into remission, a stem cell transplant was my only hope.

The decision to go through with that transplant was a hard one. The numbers were stacked against me: I had only a 10 to 30 percent chance of surviving, and if I did, my future would be different from the one I had imagined for myself.

Not that I had a set plan for life, but I did have set of ideas: travel, journalism, adventure, love, a future rich with experience. I never considered limitations, only possibilities.

It was this spirit that took me to New Orleans in 2003 after graduating from college. I didn't know what to do with myself back then until a blue-eyed debutante who drove around in a light-blue Cadillac told me that in the Big Easy I could ride a bike everywhere (I could not afford a car) and that jazz spilled into the streets. Those reasons were enough for me to pick up and go.

I believed my life would always be like that: free and mobile and unrestricted. But the treatment regimen that my doctors described to me four years later made me wonder if I'd have to live a compromised life. The life of a caged bird.

I thought it might be better to die.

I remember asking a doctor during the first 24-hour, seven-day chemotherapy drip, "Will I be able to go to New Guinea one day?"

He scrunched his face. "Why would you want to go there?"

I didn't want to go there. New Guinea was just the most remote place I could think of. I needed to be reassured that the day would come when I'd travel to faraway places again.

As the odds against me grew greater and the treatment options more extreme, I confronted the issue of children. The full-body radiation that precedes the stem cell transplant would make me infertile. I sat cross-legged in my hospital bed, a mound of tissues piling in my lap, as I mourned the children I would never birth. A friend tried to cheer me up. "Well, the upswing is that you won't have to use a condom anymore," Dave said. I guess that could be considered a silver lining, but I would rather have had my eggs.

I did not have a desperate yearning to have children, but to have the choice radiated out of my body -- to be sterilized -- what kind of woman would that leave me? And menopause: It's a cloud that hangs over every young woman's future, but I'd venture to say that many of us -- myself included -- don't know much about it. Would I dry up and become uninterested in men? Would I be a 56-year-old woman in a 26-year-old body? Or worse, would I acquire the body and energy of a woman 30 years my senior?

My fears about the future were powerful. But the real reason I considered refusing treatment was that I was exhausted. Fatigue sapped my will to live, to try anything. Yes, my bone marrow was chock-full of leukemia, and I'm sure that played a part. But still, I felt as if I had acquired a lifetime of tiredness and a sense of helplessness against the tide of sorrow around me.


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