Brain Cancer Was Supposed to Kill Me. Instead, It Gave Me a Second Life.
"A devastating diagnosis prompted a reporter to revisit his past — and repair his mistakes.
By Rod Nordland
Rod Nordland is a former international reporter for The Times. He worked in more than 150 countries over a 40-year career.
“This disease is incurable, it’s terminal, and it will eventually kill you. Tell your children, tell your family, they need to know the truth.”
Dr. Phil Stieg’s verdict came after my brain surgery at Weill Cornell Medicine in New York City. He’d extracted a lime-size mass from my right parietal lobe — glioblastoma, a malignant, incurable grade 4 brain cancer, known as G.B.M.
I had about 15 months to live, he told me, maybe a bit more with good treatment. It was July 2019.
Death was not alien to me. I had spent my career facing it down, my own and others, as an international correspondent for The New York Times and elsewhere. I’d covered wars from Cambodia in 1978 on through Iraq and Afghanistan, and I’d seen my share of carnage.
But, if I’m honest, I never thought I’d die myself. And I didn’t.
What actually happened was even stranger.
In fact, the day of the surgery was the first day of what I’ve come to think of as my Second Life.
•
The French neuroscientist David Servan-Schreiber, who survived 18 years with brain cancer, is one of many philosophers of cancer who speak of the phenomenon of the Second Life. Faced with a terminal diagnosis, patients realize that a new vista has just opened up. It is one of doctors, impairment and uncertainty, to be sure, but also one of surprising beauties and benefits.
This is what happened to me.
The brain surgery took place on my 70th birthday. No way to celebrate. But at least I had company: my partner Leila Segal, a British writer, and the love of my life, who had been with me every step of the way since I’d had a seizure and collapsed in New Delhi a month earlier.
Also at my bedside were close friends and my five siblings who had traveled from Philadelphia. But most astonishing was the presence of my three children, from whom I’d become gradually estranged since separating from their mother, my ex-wife, 13 years earlier. They were all there for me, despite our ruptures.
My own father had been violent and abusive. A serial offender, he died in jail. I’d tried hard to be a good husband and father. I was proud of myself for not mistreating my wife and children as he had done his. But I hadn’t appreciated how my long and frequent absences — the missed birthdays and milestones — had alienated me from my family.
As I surfaced from the anesthesia, I saw my children by my bedside. It was the first time we’d all been together in years. In that moment I knew, perhaps for the first time, how deeply I was loved. If a fatal brain tumor was the price I had to pay for that, I considered it a fair bargain.
The old wounds were hardly healed, of course, and there were any number of ways this gathering could have gone south. And yet, something profound had happened. My family’s presence told me that we were in this together. I hoped we would continue to be in the hard months and years ahead.
The greatest challenge has been the work I’ve had to do on myself. The treatment — chemotherapy, radiation and steroids — brought out the worst in me at first. Keppra, an anti-seizure drug, is notorious for producing aggressive rage. Leila was the recipient of that.
Before my discharge from hospital, we sought the advice of a neuropsychologist, who helped us adapt to the emotional lability a brain tumor can produce. Together, we would overcome this, we decided, and we did. With the help of Meigs Ross, a gifted couples therapist experienced in working with brain injury, we found ways to adjust. “There are now three of you in this relationship,” she told us, “Rod, Leila and G.B.M.”
One night, Leila came out of the bedroom after hearing a crash. I had been drinking a bottle of wine and dropped it from my left hand, which had been paralyzed since my surgery. When I was a working journalist, alcohol was practically a tool of the trade. But now, it was increasingly risky. Around the anniversary of my diagnosis, I sought treatment for alcohol abuse, and with the help of a counselor, spoke for the first time about my father’s cruelty. Over the course of our year working together, I came to understand why I’d used alcohol to anesthetize myself. By its end, I realized I’d been liberated, finally, from the shame my father had bequeathed me.
After that, I decided to fight for the best possible life. I signed up for a mindfulness-based stress reduction course. My children were amazed. They said they’d known me as a tough guy, and now I was practicing loving-kindness meditation. I was distressed to hear that the hugs I now gave them regularly were something they would never have expected from me in the past. One of my children said I hadn’t told them I loved them when they were growing up. I’d not even been aware of this. Now, saying those words was more important to me than any story I’d ever chased.
•
G.B.M. is nicknamed the Terminator, because of its aggressive, incurable nature. More than 10,000 cases are diagnosed in the United States each year. There are no confirmed genetic, environmental or lifestyle causes. It is the disease that killedSenators Ted Kennedy and John McCain, and President Biden’s son Beau. Among malignant primary brain tumors, it’s probably the most common — and the most deadly.
But as far as I was concerned, I was going to make the best of it. I’ll overcome this and suck it for all it’s worth, I wrote in my journal after my diagnosis. About six percent of us with G.B.M. survive five years. There was no reason I couldn’t be one of those, I thought.
“One of the great things about being a foreign correspondent is that the material is often just so damn strong,” I wrote to a friend soon after, adding: “That is even more true of one’s own catastrophic illness; and if I couldn’t make something compelling of it, I wouldn’t be much of a writer.” I’d just published an essay in The Times about getting cancer, and I wanted to write more.
And that became my new professional life. I wrote a book, half memoir of my years as a correspondent, half memoir of living with cancer.
The big projects of my Second Life were closely connected: I was revisiting my life’s work while I worked on repairing my life’s mistakes. I could see that my old arrogance, the certitude that dominated my every action, had probably helped make me a pretty successful reporter and bureau chief. But it had kept me from being a father my children could love and a fulfilling partner, a man capable of real intimacy.
I know it sounds a bit crazy, but as I’ve often told people, my brain tumor is the best thing that’s ever happened to me. Friends and colleagues raise eyebrows at that. They’re skeptical — “this disease is incurable, it’s terminal, and it will eventually kill you,” as my doctor had said.
I have already outlived the median life expectancy for someone with G.B.M. by some 40 months and I’m still going strong. As I joke, “terminal cancer seems to agree with me.”
I’m nearly to the five-year mark. The longer I live, the more new treatments come along. I enthusiastically sign up for all of them. A small, localized recurrence was kept in check using Gamma Knife radiosurgery. Now I’m receiving targeted treatments designed to slow, or stop, the cancer in its tracks. They seem to be working. My neuro-oncologist is rather like a general waging a war through a series of smaller battles, each designed with a particular vulnerability of the enemy in mind.
I’m realistic about my prospects. I know there’s no cure — yet — for this disease. But as I tell everyone, I still don’t believe I’m going to die. Leila and I are planning our long-dreamed-for house in southern Italy, which we’ll build together, with a grove of orange trees on a terrace over the sea. I hold my children close. And so long as we are still able to dream, we are truly alive.
Excerpted from the book “Waiting for the Monsoon” by Rod Nordland. Copyright © 2024 by Rod Nordland. From Mariner Books, an imprint of HarperCollins Publishers. Reprinted by permission."
No comments:
Post a Comment