It was a regular check-up. A routine blood test. I felt no symptoms. In the 38 years since I broke my left femur as a boy, nothing medically interesting had ever happened to me. The next day my doctor called. I had an elevated level of alkaline phosphatase – an enzyme in my blood I’d never heard of.
“Alk phos,” as my doctor explained, could indicate problems with my liver or my bones, so more tests were ordered. My liver was fine, so my doctor recommend I have a full-body bone scan. “Don’t worry,” she said, “it’s not like you have cancer.”
During the test, I lay in a machine that looked like a giant daddy longlegs as a metal plate moved slowly down my body. About halfway through, when they got to my legs, the technicians began to speak in hushed tones.
“Did you injure your leg recently?” they asked. “I broke my leg when I was five,” I said, hopeful. They started chattering more intensely. More tests were ordered, an x-ray, then an MRI. Then one afternoon, I got a call from my doctor. “The tumor in your leg is not consistent with a benign tumor,” she said.
I stopped walking. It took my mind a second to convert that negative into a much more horrifying affirmative: I have cancer.
Finding a Doctor
I stumbled home and lay down on my bed for several hours, staring at the sky and wondering about all the ways my life would change. Mostly, I thought about my twin three-year-old daughters. “Would they wonder who I was?” I thought. “Would they yearn for my approval, my love, my voice?”
As a writer whose work revolved around walking the roads of history, the idea that I might never walk again was staggering. I was the “walking guy.” Now I was facing the very real possibility that I might never walk again.
“We had found the right doctor. We had found hope.”
Two days later, I awoke with an idea. I would reach out to six men from all parts of my life and ask them to be present in the lives of my daughters. “My daughters may not have their dad,” I wrote these men. “Will you help be their dad?” I called this group of men “The Council of Dads.”
This idea brought me comfort, but it still left the medical issue to deal with. Those initial days were a tangle of tears and late-night conversations, doctor consultations, insurance negotiations, determination, hopes, and fears. I soon realized I was looking at one of three options: a lost year, a lost limb, or a lost life.
Per the suggestion of my friends, my wife, Linda, and I scheduled a consultation with “the one person to see in this area” – John Healey, Chief of the Orthopaedic Service at Memorial Sloan Kettering.
Dr. Healey, I came to learn, has been variously described as the man the one and the guru in this field. He was the president of the International Society of Limb Salvage. In the presence of his broad knowledge and gracious expertise, we instantly felt comforted. His hands were the best chance to save my leg.
Within days tests showed I had a seven-inch tumor, an osteosarcoma in my left femur. Little is known about how to treat this rare cancer. Twenty-five years ago, doctors would have cut off my leg and hoped I beat the 15 percent survival rate. Now, however, there was a chemotherapy regimen that quadrupled the survival rate.
About halfway through our initial meeting, Dr. Healey looked at me and said, “In the worst-case scenario, this appears to be curable.” He also added several times, “This is a war, and I intend to win it.”
We had found the right doctor. We had found hope.
Designing My Treatment
To determine my exact treatment, Dr. Healey conducted an open biopsy – extracting part of the bone to be sent for pathology testing. The biopsy confirmed I had a high-grade, osteoblastic, osteogenic sarcoma. “A very bad disease,” as Dr. Healey put it.
Still, these tumors can be responsive to treatment and in many cases can be cured outright. An oncologist joined my team and a detailed plan was designed and recommended to us: I would immediately begin the first of a dozen three-week cycles of chemotherapy; the bulk of these would take place before surgery to remove the tumor.
Chemotherapy prior to surgery served two purposes: to rid my blood of wandering cancer cells and to shrink my tumor before surgery. The operation would then remove the bulk of my femur, and replace it with a titanium prosthesis. After the surgery, I would undergo several more months of chemotherapy treatments.
After healing and regaining strength from chemotherapy, I would begin physical therapy to learn to walk again. Even though the road ahead seemed long, the details gave me a clear map of what lay ahead.
It was, as we referred to it around our home, a lost year. It would be tough; but my team at Memorial Sloan Kettering inspired confidence and trust. It would be a team effort.
My One-Year War
From the very beginning, my doctors focused on saving my leg and, with it, my ability to walk. Life during chemotherapy was horrendously challenging, but the team went out of their way to make it bearable. I was bolstered by the fact that the initial treatments were working and the tumor appeared to be shrinking.
As I was rolled into surgery, I was feeling upbeat. Dr. Healey had planned an innovative approach that depended on his truly unique skill and experience: He cut out the nine inches of my femur that housed the tumor, and replaced it with a titanium prosthesis. He also removed the parts of my thigh muscle that were corroded by cancer.
Then, with the help of plastic surgeon Babak Mehrara, they removed most of my left fibula from my lower leg and grafted it to the healthy parts of my femur. The idea was to fuse an inorganic object – the titanium – with an organic object – the fibula – to make the resulting construct as strong as possible. Complicated? Yes! Rare? Even more so. Dr. Healey told us he had done this procedure only twice before.
The surgery lasted 15 hours and went brilliantly. Ten days later, Dr. Healey made a surprise visit to my hospital room. He’d come from the hospital’s Tumor Review Board with some exciting news: The kill rate for my tumor was 100 percent; the chemotherapy had killed all my cancer, thus improving substantially my prospects going forward.
“This is not a small skirmish,” he said. “This is a victory in a major battle.” He shook my hand. We were victors, and Dr. Healey was the hero.
Moving Forward – On Two Legs
I’ve spent the time since the end of my treatment living life as fully as possible. I am still cancer free. And after 500 hours of physical therapy, I now walk without crutches or a cane and with only a slight limp. I can bike across the Brooklyn Bridge with my daughters and teach them how to swim.
The Council of Dads has also become an integral part of our lives. When our girls turned five, the men convened for the first time. “They’re here,” Linda said, “and you are, too.” As one of the men said that night, “When I first heard the idea, I submitted my resignation. But now I realize, whether we’re healthy or sick, men or women, we all need our own Councils.”
One reason is that the experience forced me say out loud what I often kept inside. Cancer, I found, is a passport to intimacy. It is an invitation – maybe even a mandate – to enter the most vital, frightening, and sensitive human arenas. It’s a responsibility to address those issues that we rarely want to discuss, but that have the power to transform us when we do.
That to me is the principal lesson I took from my experience. Linda and I formed The Council of Dads for our girls, but really it changed all of us.