Most people knew Bernadine Healy, who died Saturday, August 6, as the former head of the National Institutes of Health and the American Red Cross. Fewer knew of her struggle with brain cancer. In the 2007 book excerpted here, Healy used her unique perspective and personal struggle with the disease to explore the state of cancer research, care, and treatment today and tomorrow.
Originally published on usnews.com on April 1, 2007.
So this is how I die.
These words ran through my mind as I lay in the emergency room of the Cleveland Clinic on Valentine's Day, 1999. Only a few hours earlier, my husband, Fred, and I were sitting up in bed watching the Oscar De La Hoya fight. At some point that I cannot recall, I passed out, only to awaken with the local rescue squad standing by our bed. I soon found myself strapped to a narrow gurney in an ambulance with flashing lights, hurtling along dark, deserted streets into midtown Cleveland.
Patrick Sweeney, the neurologist who was the attending physician that evening, met us in the ER, ready to perform the usual neurological tests for what my husband believed had been a seizure. Fred is a renowned cardiac surgeon and at the time was the director of the Cleveland Clinic, but he was pure husband that night. He listened attentively to Sweeney and acted as the best of spouses would, making sure I was comfortable, squeezing my hand, and calming my nerves with lighthearted jokes: "Hey, was this just your way of getting out of watching the prizefight?"
But very shortly we found that my blackout had not been an inconsequential seizure after all. The spell had resulted from a good-sized tumor growing in the left side of my brain. I asked Sweeney if it was malignant. Leaning over the rail, peering into my eyes, he said simply, "Yes."
All I could think was: So this is how I die. Not in a car accident or a plane crash, not felled by a heart attack in honor of my own medical specialty. It would be by my own cells, mutating and roaming inside my body—in my head, no less. I felt powerless and immobile. My own life's work with the critically ill brought me no special strength or solace; if anything, I knew too much. This cancer was insidious, already having grown to a near-fatal state in my brain without ever tipping me off. Not one hint.
Looking up into the sad, drawn face of my husband, I knew that all of our medical expertise combined would not help us cope with this numbing news. No matter who we are, from whatever background, we all feel the same chill upon hearing the "C" word.
My husband got the wheels in motion. He arranged for the surgery that would be performed a few days later by Gene Barnett, his colleague and director of the Cleveland Clinic's Brain Tumor and Neuro-Oncology Center. Barnett would remove as much of the tumor as he could. Though he did not spell it out to me in detail at the time, Barnett believed the tumor was what's called a glioma. A glioma is a tumor that arises in the brain's glial cells (astrocytes and oligodendrocytes), whose function is to create supporting structures for neurons, or nerve cells. Cancers are usually graded from I to IV based on how nasty they look under the microscope. He speculated mine was a grade III glioma made up of a mix of both forms of glial cells.
I pressed Barnett as to what his diagnosis would mean for my future. His answer was sobering: With a full course of treatment, including surgery and radiation and possibly follow-up chemotherapy, I might have one or two good years, maybe more; with surgery alone, it would be less. In either case, the outcome would be improved if he was able to remove the entire tumor. But that was the rub, and a big one. The tumor was in an unlucky location: on the left side of my brain.
Like most people, I'm "left-brained." If I had to have a brain tumor, I knew from my basic medical training that having it on my dominant side was not the best news. The situation was even dicier because the mass sat near the brain's speech center. If by some stroke of good fortune my speech center happened to be located on the right side of my brain, or present in both brain hemispheres, the risk that removing the tumor could damage my ability to speak would be eliminated. So, prior to surgery, I would have a special test to determine something most of us never need to know—exactly where all my chatter was coming from.