Living Time: Faith and Facts to Transform Your Cancer Journey

Hard to find

Chapter One

A Valentine's Day


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. It was in the wee hours of the morning, a time I remembered all too well from my medical residency years at Johns Hopkins. That's when the ER would fill up with drunks and drug addicts, knife and gunshot casualties, car accident survivors, and early morning heart attack victims. Many years had passed since then, but now I was one of them, an emergency room patient in great distress. I had just received startling information that would forever change my life.

Only a few hours earlier, my husband, Fred, and I were sitting up in bed watching the Oscar De La Hoya fight on HBO. At some point that I cannot recall, I passed out, only to awaken with the local rescue squad standing by our bed. I was confused. Why were they talking to Fred about my ambulance ride to the hospital? Why was my husband on the phone with his good friend Al Lerner, asking him to meet us in the emergency room? I protested that this was all unnecessary, that I felt entirely well. I had an overwhelming desire to stay and comfort our terrified twelve-year-old, Marie, trembling in the shadows, and to talk to Michele, my sister, who'd rushed over to be with her. Despite these protests, I soon found myself strapped to a narrow gurney in an ambulance with flashing lights, hurtling along dark, deserted streets into midtown Cleveland.

Dr. Patrick Sweeney, the gentle, white-haired 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 Dr. 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. Fred knew first because he went off to huddle with the radiologist to review the brain scans. He stood quietly by, eyes swollen, as Dr. Sweeney brought me the shocking news: the spell had resulted from a good-sized tumor growing in the left side of my brain. I asked Dr. Sweeney if it was malignant. Leaning over the rail, peering into my eyes, he said simply, "Yes."

Even though Fred and I have an uncanny ability to think the same thoughts at the same time, this was one moment when we could not bear to share those thoughts. After all, we always said we were goose and gander, mated for life; we wouldn't do well without each other. And 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.

Here I was in the prime of life, and fairly diligent about all the healthy habits I had preached so reverently for decades. Though a cardiologist by training, I had also earned my stripes in the war on cancer: I was then the dean of the College of Medicine and Public Health at Ohio State University, where I had been expanding the school's cancer genetics program. Years before, I had headed the Research Institute of the Cleveland Clinic Foundation, where I built its first cancer biology department. And as director of the National Institutes of Health in the early 1990s, I oversaw the National Cancer Institute and participated in its 1991 celebration of twenty years of the National Cancer Act, which brought us the war on cancer. There I also immersed myself in the massive effort to unravel the human genome, which will have its greatest payoff in the area of cancer. And in the course of my life as a hands-on physician, I had cared for and consulted with patients who had had a brain tumor. I had every reason to know the meaning of my newly diagnosed illness. It was not good.

At that long moment of discovery, 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. It's a universal fact: when serious illness strikes, we are the same vulnerable souls.

And so are our families. Returning home the next day, that became all too evident. Their world, too, suddenly becomes cloudy. It was hard to explain to those on the home front what still seemed inexplicable to us. To my ninety-eight-year-old mother-in-law, Nonie, who lived with us, this was bewildering news. Her "Bernie dear" was never sick. As for my mom, cancer was the thief that had taken my dad from us twenty years before, and it was not hard to see in her pale, stoic face that she knew what might be in store. How good it was that she had moved right next door to us several years before–although the plan then was that we could look after her, not the opposite. Things also changed for my sister Michele, who was part of our family compound, too. Her protective big sister was suddenly the weaker one. My heart swelled with gratitude when she whispered in my ear that if it was needed, she was ready to offer up her bone marrow or anything else she could to get me through this. But what proved hardest for me were those lingering hugs from my two girls, twelve-year-old Marie, who had been up all night, and nineteen-year-old Bartlett, who rushed home from college. Moms are supposed to be there when you're growing up, after all, and the sinking feeling that it might not happen for them was obviously written all over my face. As I surveyed my treasured nest, I knew that this illness was not only about me. I had just managed to rock my family's universe, and it was going to be my job to keep that in mind as I navigated this journey.

I recollect this traumatic time not to torment myself or to unsettle you, but because I have come to understand that in slogging through the dark valley of cancer I experienced another dimension of life. Confronting and surviving this disease compelled me to do a mitzvah, a good deed, in the only way I know how–by writing this book. As a physician who has cared for the seriously ill and spent a lifetime immersed in almost every dimension of health and disease, I was now the vulnerable patient. Through it all I've acquired some hard-won insights that just might help others facing a similar predicament–insights that I so dearly would have valued but were not clearly evident to me at the time. And they came not because I had a unique experience that turned out better than expected, but rather because I lived an all-too-common one. Only in retrospect can I see that my illness turned out probably as it should have, but not as well as it will in the future for others who will have the means to find it sooner and extinguish it faster. The common denominator for us all, in the still early morning of this new century, is that we are witness to a mighty sea change in the life of medicine and its war on cancer.

But back to the home front. 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. Dr. Barnett would remove as much of the tumor as he could. With tissue in hand we would nail down precisely what variety of tumor showed up as a nasty white blotch on my scans and map out the next steps. Though he did not spell it out to me in such detail at the time, Dr. 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. This was one step from the summit on the glioma malignancy scale, the summit being the more common variety known as glioblastoma multiforme, or GBM. I pressed Dr. 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," as evidenced by my right-handedness. 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. Speech, like handwriting, can be dominated by the left or right side of the brain, or controlled by both. (You have heard of ambidextrous people. There are also some whose speech is "ambi.") 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.

But figuring this out was not so easy, as I was soon to discover. It required an invasive procedu...