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originally published in the September 2006 issue of SELF Magazine, on newsstands through Sept. 25

The women's cancer you don't know about


Newsday Staff Writer

September 5, 2006

At the Memorial Sloan-Kettering outpatient cancer center in midtown Manhattan, benches line the elevators that soar high above the city. I noticed the tan upholstered seats immediately, perplexed that anyone would even need to sit for an elevator ride. I was there for my first round of chemotherapy, in September 2004, having been diagnosed with advanced lung cancer at age 36.

Stepping off the elevator, I entered a room with leather couches and walls of trickling water intended to soothe the soul. But nothing could calm me down. Not the tea or packets of graham crackers in the corner. Not the televisions showing "Live With Regis and Kelly." This is hell's waiting room, I thought to myself. At 36, I should have been contemplating my future, not my funeral. But there I was, diagnosed with a disease that I knew was too frequently a death sentence.

If I'd thought about it at all before my diagnosis, I wouldn't have recognized myself in the classic profile of a lung cancer patient -- that is, a 60-year-old man who has smoked for most of his life. I learned in the rudest possible manner that lung cancer is in many ways a women's disease now. It kills more than 70,000 women each year in the United States -- that's more than breast, ovarian and uterine cancers combined. And women younger than 40 are at slightly greater risk of developing the disease than men under 40, according to a report from the American Cancer Society in Atlanta. Rates of the disease in men have leveled off in the past 25 years, but rates in women have gone up. Women who smoke, a new study in The Journal of the American Medical Association reveals, are almost twice as likely to get lung cancer as male smokers. Yet there are no cute pink ribbons, few nationwide walks for a cure and no celebrity spokespeople who have had the disease. They usually don't live long enough to advocate for awareness and research dollars.

For me, cancer's unexpected calling card came on a brilliantly sunny August day in 2004. I'm a newspaper reporter, and that day I was looking up courthouse records for an investigative piece about corrupt homeless shelter operators. I then drove to a doctor appointment I'd made after noticing that veins above my right breast had become more visible. My right arm was also slightly swollen.

The kind vascular surgeon at St. Luke's–Roosevelt Hospital Center who did an ultrasound of my arm that day said I might have a blood clot. But when he did a chest X-ray, he saw something else: a mass. "Could be an infection," Dr. Alan Benvenisty, the director of the renal transplantation program at the hospital, said somberly. "But most likely not." I knew I was in trouble when he called his wife to tell her he'd be late coming home and then personally walked me across the street to get a CT scan. The test took 20 minutes, and confirmed that I had a large mass in the right side of my chest pressing against my lung, and several smaller ones in the lining of my lung. Dr. Benvenisty called two of my friends, Monica Quintanilla and Veronica Marino, to come be with me. He then suggested I meet with a chest specialist.

-- -- , I thought, even before a biopsy confirmed my worst suspicions. I have cancer.

I know what you're wondering: Did I smoke? I did, but because of the relatively short period of time I smoked, five years off and on, my oncologists consider me a nonsmoker. I picked up the habit at the ripe old age of 30, the combination of the end of a relationship and a trip to Italy, where everyone seemed to have a cigarette dangling from her lips. In 2000, I made a pact with a friend at work; we both quit for about a year. But on Sept. 11, when I saw the bodies falling from the World Trade Center towers, I rushed out and bought a pack of cigarettes. I couldn't light up fast enough. Shortly after, I quit yet again. In the fall of 2003, I started up while on an assignment in Spain for my newspaper. It was too enticing not to smoke at a Barcelona cafe. I quit and then picked up the habit several more times before my diagnosis.

Lung cancer is largely perceived as self-inflicted, but 15 percent of women who die from it never smoked, according to a recent study in the Journal of the National Cancer Institute. Dana Reeve, who died last winter, was a nonsmoker, which may have made people more sympathetic to her plight. No one knows if my occasional smoking caused my cancer, but in my darkest moments I do blame myself. And when I don't, there are plenty of others to do it for me: Society tends to pillory people for illnesses that can be caused by bad habits. This attitude is always unfair, but particularly so for nonsmokers like my friend Amy Beck, 35, an executive chef from Farmingdale. I met her through Memorial Sloan-Kettering Cancer Center (MSKCC), after I asked to speak with a patient who was close to my own age. "I felt angry because there's a set of rules as a child that says don't do these things and you'll be OK," says Amy, who was diagnosed in 1998. "Don't smoke. Don't take drugs." Amy did neither. "Yet I still suffered the consequences," she says.

In 1975, men who had lung cancer outnumbered women four to one. By 2000, the disparity had narrowed dramatically, and now there's a new type of equality in America: Women and men contract the disease just as frequently. Although the precise number of young women who get the disease is hard to come by, Dr. Alan Sandler, medical director of the Vanderbilt-Ingram Thoracic Oncology Program in Nashville, says, "I'm treating more younger women than I did before." Researchers are also beginning to realize that the disease behaves differently in women. It might be our hormones -- estrogen may fuel cancer cells to grow and divide more quickly -- or it could be that we process environmental carcinogens such as radon and chemicals in cigarettes and secondhand smoke differently than men. Researchers aren't sure. "We as a society don't address lung cancer as a women's health issue, and it should be brought to the forefront," says Dr. Raja Flores, the thoracic surgeon directing my aggressive treatment at MSKCC.

After I was diagnosed, I needed to figure out my next step, which, if all went well, would be surgery. I was referred to Dr. Flores and was lucky to get in to see him that same week. My boyfriend, Al Baker, and one of my closest friends, Sylvia Adcock, came with me. Flores was squeezing two people in that day between surgeries, his assistant said: a man who had flown in from Italy and me. A very scared me.

Emerging from the operating room still wearing his green surgical scrubs and clogs, Dr. Flores listened intently and sympathetically as I cried through much of the appointment. Sylvia took notes because I could barely hold a pen. I don't really remember what I blurted out amid sobs, only that I was 36 and that I couldn't die because my death would destroy my parents. I told him I was an only child. He put his hand on my arm and calmly said he would do everything he could do. He told me he was 37. And that he was an only child, too.

Dr. Flores explained that at my advanced stage, IIIb, where there were tumors throughout the chest cavity and when the outside of the lung is involved, my cancer was technically inoperable. People whose cancer has spread as far as mine usually receive only chemotherapy and radiation, which tends to shrink the tumors but not always rid the body of them, so they're more apt to go on and spread. But Dr. Flores wasn't ready to let it go at that. If the cancer hadn't metastasized to other parts of my body (my brain, for example), he would operate on me, even though other doctors faced with a case like mine would not. The best-case scenario was that he would take out my right lung and the surrounding tissue, removing every trace of the cancer. The worst case I didn't want to think about. "I think I can get this," Dr. Flores told me on that first day, slapping my films against a white light box. I wanted so much to believe him.

An MRI soon revealed I had no cancer in my brain, and Dr. Flores said that if I could tolerate chemotherapy to shrink the tumors, we'd go ahead with that before operating. The very next day, I somehow transitioned from hysterical to pragmatic, planning for the intense months-long triathlon of chemo, surgery and radiation that was to come. I emerged from my catatonic state and went somewhere unexpected: to Victoria's Secret.

If you were going to get cancer, I reasoned with Sylvia and another close friend, Leah Ritchie, you had to have matching tops and bottoms for those endless hospital visits. Nothing particularly fancy, just black cotton or nylon. My friends and I laughed at the absurdity of buying the right underwear for your potentially terminal illness. They encouraged that indulgence, and I felt reasonably sane for the first time in days. It was easier to focus on being a normal person out on a shopping spree than on the other things I had to contemplate.

The next week, I began treatment. I vomited my way through four rounds of chemotherapy over four months and became weaker by the day. After my first session, I couldn't go to work anymore. By the third round, I'd become one of those people who had to sit for the elevator ride to the chemotherapy suites.

I found it hard to eat. Nothing tasted right. I lost my love of chocolate. I staggered through two hospital stays with major infections because although chemotherapy is supposed to kill cancer cells, it also kills the good cells that keep your immune system strong. I developed a blood clot in my left leg and had to give myself a daily injection of blood thinners. Throughout it all, I had no idea if the tumors in my chest were growing or shrinking, because I couldn't feel them. I could barely show myself in public, I was feeling so physically horrible and emotionally devastated. I lost my long, straight chestnut hair -- first in strands, then in massive clumps that would come out in the shower. How I used to love twirling my hair around my finger when I was bored! In a fit of anger one day, I took scissors and lopped off what was left. Then I got a wig. I hated it, all hot and itchy. My friends did all they could, buying me hats in all different colors and shampoo for my wig. They even bought me giant orange earrings, as if that would somehow disguise the fact I was bald. Mostly, I wore a soft blue cotton cap to warm my cold head or a Boston Red Sox hat. And I was getting skinnier, something I had dreamed about during healthier days but now feared during my illness.

In the course of all this, I found out who in my life was real. There were many who had the strength to show up for my illness: my boyfriend, close friends, people from work and my parents. Friends came, trying to entertain me with People magazine; I learned who Paris Hilton was. Or they dragged me outside, in the cold, harsh light of day, to walk in the park. My mother and father came down from Boston during the week to take care of me, while Al, who worked in Albany as a journalist at the time, did the weekend shift. My illness showed, in a good way, what my relationship with Al was all about. He and I would watch movies or I'd mostly lie around being sick. Or tired. Late at night, he would hold my hand, or hold my head out of the toilet as I threw up. A few friends simply checked out.

Finally, in December 2004, Dr. Flores said I was ready for surgery to remove my right lung. The chemotherapy hadn't shrunk the tumors, but it had kept them from growing. Surgery to remove my right lung. It sounded so surreal. The operation would be difficult -- the tumor was close to some crucial wiring -- but Dr. Flores was ready to be aggressive about it, and I was right there with him.

I prayed the night before going to the hospital and wrote my will. I said goodbye to my friends, just in case. Surgery has its own risks, such as cardiac arrest or bleeding to death. I told Al I would try to make it through for him. The next morning, Dec. 17, he drove me to my moment of truth.

Dr. Flores performed what is known as an extrapleural pneumonectomy, taking my lung and its lining, part of my diaphragm, and the outer lining of my heart. He removed all the cancer he could see, and the surgery was considered a success. After a monthlong recovery at home, I had six weeks of radiation. The technicians tattooed my chest to know where to guide the beam. I threw up every day. I was so tired, I would come home from treatments and flop into bed. Sometimes I wouldn't emerge until the next day, when it was time for another round.

My idea of progress came in April 2005, a month after my treatment ended. Al and I went to Florida, and I ate pizza -- my first solid food -- and actually liked it! I floated in the crystal-clear water of the Keys. I felt alive.

So life goes on, day by day. I'm now back at work, writing stories about other people's tragedies and triumphs. Al, who stuck by me through it all, asked me to marry him. Our wedding was on an atypically balmy day in March, in front of 150 exuberant people, including some of my doctors. But the threat of getting sick again never totally disappears. In April my doctors found that the cancer had returned near my right ribs and performed surgery to remove it, plus two ribs. Once again, they think they got it all. Once again, I hope they're right.

My friend Amy and I still talk frequently. She, too, had a recurrence and is now undergoing chemo. She's doing well. We try not to pity ourselves, though the temptation is great. During late-night phone calls, we talk about our rage or our fear, the kind that creeps up on you, the kind that makes you punch your fist into a wall or hide under the covers in the morning. I am trying to move on. But I live my life between my CT scans every three months. I often go out of my mind with worry that something is going to show up.

On the outside I'm starting to look like me again. My hair has grown back. Oddly, dark curls have replaced the straight hair I once had. I cannot bring myself to get a haircut, despite my friends' pleas and jokes that my hairstyle now resembles raw stalks of broccoli. Broccoli head. That's me. What few friends understand is that once you lose your hair to cancer, you don't ever want to lose it again, even to a hairdresser's scissors. I've become incredibly vain, buying lots of lip gloss. I also have a reverse L-shaped scar that extends down my chest and under my right breast, and another scar on my right side. At first, they were hard to look at. I'd turn my back to the mirror in dressing rooms when trying on clothes.

But these days, as I get stronger, I am finding the courage to look in the mirror full on and grasp who I am now. And when I return to MSKCC for my doctor's appointments, I am grateful to be standing, not sitting, in the elevator.

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