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Correspondence: Joel Siegel, ABC-TV, 147 Columbus Avenue, New York, New York 10023, USA. Telephone: 212-456-5910
As oncologists, you often talk about very large numbers: thousands of deaths, millions of cases, billions of dollars. I would like to remind you that you save lives one at a time.
And one of those is mine. And I thank you.
But I’d better start at the beginning so you know why I’m grateful to you.
"I don’t have good news." These aren’t words you easily forget. Especially when they’re said by a doctor who’s just finished giving you a colonoscopy.
It was the summer of 1997, I was 54 years old, and 1 week before we’d had very good news. My wife, Ena, was pregnant. The baby was due in February. The American Cancer Society’s Web site said that, all things considered, I had a 70% chance of being alive to witness the birth.
I had surgery 1 week after the diagnosis. The surgery was far more difficult than expected, the cancer far more serious. I was given a colostomy. There were nodes; the cancer had probably spread. Treatment would include simultaneous radiation and chemotherapy. The odds of my witnessing the birth of my first and only child dropped to 60%.
One day, when Ena was visiting me in the hospital, I noticed she was starting to show. I started to cry.
I remember looking out the hospital window at a tree, a tree that had somehow managed to grow large and lush even though its seed had somehow taken root on a 2-foot-wide spit of land between FDR Drive, one of the busiest highways in the U.S., and the East River, one of the most polluted bodies of water in the world.
I began charting the coincidences that had brought me, in the words of a Jewish prayer, "to this season." My grandmother had crossed this same river 6 days a week to work in a sweatshop; I’d been invited to the White House, met four Presidents, and had voted for only one of them. If whoever had given this to me wanted to take it back, I decided I could do it. I could give it back. Somehow knowing I was able to give up life gave me the strength to hold on.
My grandmother, my father’s mother, was diagnosed with colon cancer at 80. I knew that.
She died at 90 from, I thought, something else.
I got a call from my Auntie Annie while I was recovering from the first surgery, to find out how I was doing. She told me three of my mother’s first cousins had colon cancer. I didn’t know that.
Had I known that, would I have insisted on having my first colonoscopy at 50 or before? Perhaps. Had my doctors known that, would they have insisted on a colonoscopy at 50 or before? Most definitely.
The good news is I learned I am much healthier and far more resilient physically and psychologically than I ever dreamed I was.
The bad news is I have had far too many occasions to discover just how healthy and resilient I am.
The chemotherapy of choice for colorectal cancer was 5-fluorouracil with leucovorin. I had a port dug into my chest, and a plastic tubing connected the port to a pouch the size of a cereal box. Inside the pouch, a battery-powered pump would dribble the exact amount of the chemical through the tubing and into the port to my jugular vein. I slept with it, wore it, carried it 24/7, like some kind of briefcase from hell.
Two nurses came to our apartment to hook me up to the chemotherapy. They told us that if the chemical should somehow leak or spill, "Do not under any circumstances touch the chemicals."
They gave us a 24-hour emergency number to call. They would come day or night to clean the mess; it’s that toxic. And I thought, "That’s on the outside. What is it doing to my inside?"
I found out almost instantly. I got sick and stayed sick.
I also began a series of radiation treatments three mornings each week at Memorial Sloan-Kettering Cancer Center. In preparation, they created a three-dimensional, computer-generated model of my tushie; an "X" marked the spot the radiation had to hit. I never saw the model–I never wanted to–but a few times a year I’m solicited for personal items for celebrity auctions and I do think about calling Sloan-Kettering to see if the model is still around.
The major side effect of radiation is exhaustion. The effects are cumulative. By the end of the course I was so exhausted I have one memory: lying on a couch, a glass of water on a coffee table about a foot away from my hand. I was too tired to move my arm to grab it.
One of the side effects of chemotherapy, I was told, is loss of appetite. What I wasn’t told is that food would become demonized. Dry toast, which I tried to down, was like biting into a two-by-four. Rice pudding came to life in the spoon, the grains of rice turning into maggots.
Cancer is infantilizing. You can no longer take care of yourself, adding insult to injury.
And cancer is insidious. It attacks where you are most vulnerable.
My last day of chemotherapy was the day we took Dylan home from the hospital.
My follow-up consisted of regular computed tomography (CT) scans to make sure the cancer did not spread.
It did.
Just before Dylan’s second birthday, I got a phone call from my oncologist, the scan I had taken that morning was clean. I was standing on 5th Avenue when I received the call, walked into a shop and bought Dylan a cashmere sweater for his birthday. Not the wisest present for a 2-year-old boy. If I’d been on Park Avenue in front of the Mercedes dealer, I would’ve bought him a car.
The next day I got the "Oops" call.
A lesion on my left lung. I would lose the lower lobe of my left lung. My doctors were hoping it was a new cancer, unrelated to my colon cancer (I was a smoker but had quit smoking 20 years before). Primary lung cancers found this small have a 90% cure rate. It wasn’t lung cancer. My colon cancer had metastasized.
A few months later, they discovered something on my right lung. Scartissue, they were hoping. Perhaps it came from an undiagnosed case of pneumonia. Let’s watch it, wait to see if it grows.
One of the rules of my profession as a journalist is: never ask a question unless you really want to know the answer. Which is why I never asked my doctors: "If it’s scar tissue, why wasn’t it there before?" Of course it wasn’t scar tissue. More surgery. I lost the middle lobe of my right lung.
The meds prescribed to deal with the pain after lung surgery, the depression of the cancer diagnosis, and the lower gastrointestinal problems of learning to live with a foot and a half less intestine than God intended created an unholy cocktail with sometimes severe physical and psychological reactions. Working with a psychiatrist whose specialty is psychopharmacology, it took us a year to balance the meds, often by trial and error. When one commonly prescribed antidepressant seemed to be causing anxiety and irritability rather than eliminating them, the psychiatrist confessed, "This is an art more than a science; the symptoms for too much of this drug are exactly the same as the symptoms for too little."
And then, after 6 years, three surgeries, chemotherapy, radiation, a temporary colostomy... it came back. Last September, a routine CT scan showed multiple lesions in what is left of both my lungs. "Small volume, bilateral stage 4 metastatic colorectal cancer to the lung," is the diagnosis. The prognosis is very good, the lesions are too small to be treated effectively; it may be a year, may be two, before treatment is called for. In the meantime, it is like waking up in the middle of the night and the room is dark and all you can hear is a ticking clock.
The terrible truth is that if I had done one simple thing, all of this—the pain, the surgery, the time, the anxiety, the fear—could have been avoided.
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I broke one of the rules of my profession and asked aquestion I did not want to know the answer to. I asked my oncologist, "If I’d had a colonoscopy at 50, would I have cancer?"
He said, "Probably not. Most likely not." There would have been a polyp or two, most likely precancerous. They would have been snipped. I would have been told, "Come back in a year." There was, he estimated, a 75%–80% chance my cancer would have been literally nipped in the bud, and I would have been cancer free.
Dylan, who just turned seven, is a very healthy boy. He knows his daddy has had cancer. He knows his daddy spends more time in the bathroom than other daddies. In preschool, when he was four and kids were asking questions about death and dying, one of his teachers overheard Dylan say, "My daddy might die."
I would give anything to have spared him that.
In fine medical journals like The Oncologist, you are used to reading about very large numbers: thousands of deaths, millions of cases, billions of dollars. I would like to remind you that you affect lives one at a time. And one of those lives is that of my son, Dylan.
And I thank you from the bottom of my heart.
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This article has been cited by other articles:
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  M. J. Murphy Jr. and J. Siegel Homage to Joel Siegel Oncologist, July 1, 2007; 12(7): 899 - 901. [Full Text] [PDF]
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