In the autumn of 1995 life looked great to Karen Duffy. After more than three years as a sexy, quick-witted veejay on MTV, she had established herself as a correspondent for TV Nation, Michael Moore’s NBC documentary series. Parts in films like Dumb and Dumber and Blank Check had led Disney to begin developing a sitcom for her, and she had signed a six-figure contract as a spokeswoman for Revlon. Duffy’s personal life, too, looked promising. She had a two-year romance with country singer Dwight Yoakam and friendships with heartbreakers like George Clooney.
Not bad for a 36-year-old former recreational therapist from Park Ridge, N.J., one of four kids of developer Phil Duffy and his homemaker wife, Carol. But one morning in September, Duffy awoke with a searing headache. “I had no idea,” she says, “that it would have such a catastrophic impact on my life. “As doctors would discover, a mysterious lesion had formed on her brain stem and spinal cord—threatening to invade the control center for basic functions including breathing. Surgery could have resulted in death or paralysis.
Baffled by the growth, a battery of physicians were unable to make a diagnosis until nine months later when, finally, Duffy’s problem was identified as sarcoidosis, an immune response whose cause is unknown and that, in her case (which is highly unusual), affected the central nervous system. Noting that there are just “tens of cases” like hers, with an isolated brain-stem lesion, neurologist Dr. Nicholas Schiff, who treated her last year, says that Duffy could have lost her life. “There are any number of ways this could have turned very serious very quickly,” he says.
Treated with steroids and chemotherapy, Duffy reported to New York Hospital-Cornell Medical Center several times a week last summer while continuing as a pitchwoman for Revlon. Now, a year later, she is living with a guarded prognosis—and a new husband. Investment banker John Lambros, 31, who has shared her ordeal, “is the best thing that ever happened to me,” says Duffy, who spoke with correspondent Elizabeth McNeil at the couple’s Greenwich Village duplex. “After we eloped in February, I felt a greater sense of future than I ever have. Every day I can’t believe how lucky I am.”
ON SEPT. 10, 1995, I WENT TO the Emmys ceremony in L.A. with George Clooney. TV Nation had won an award. I woke up the next day at the Chateau Marmont with a very sharp, intense headache. It was killing me—a burning pain through the top of my head, like a spike, every seven seconds.
I realized this was not a hangover. I jumped on the next plane home to New York City. I went right to my doctor, and he sent me immediately to the hospital for tests—he was concerned about an aneurysm.
Through the pain, which never abated, I was yukking it up with the technician doing my CAT scan. All of a sudden she got a stricken look on her face and said, “Call your doctor.” I got the creeps because, boom, her whole face changed.
My neurologist told me the next day that there was a growth reaching from the base of the brain partway down my spinal cord. He’s an Italian-American, and he told me it was the size of mostaccioli [a tubular pasta]. Within a week I lost all sensation in my left hand. And I had this searing pain in my neck where the growth presses on the nerves.
Over a period of nine months, I was in and out of a half-dozen New York City hospitals for more tests. When I came back to my apartment in Greenwich Village, I was still going from doctor to doctor. I was weak, I was scared, but I was trying to handle it the best I could: Three weeks after they found the lump, I had an anniversary celebration for it. I wore a beautiful gown and the tiara I won as Miss Coney Island Mermaid Queen. My date and I had a bottle of Dom Perignon. We sat in my garden with a little birthday cake for my lump. I’m thinking, “It’s going away, so we’ll just take the Mickey out of it.”
But by November my condition worsened. I had incredible pain in my hands and neck. And I had flare-ups every few days—my skin was so sensitive, it felt like I was boiling in oil. I couldn’t be touched. My doctor would call me every morning at 8:30, and I’d say, “I can’t feel my right calf or my right butt cheek and my two hands.” Doctors suggested and disproved a menu of diseases, including non-Hodgkin’s lymphoma, but they were baffled.
Confronting the possibility of going from a vibrantly healthy woman to a grievously ill one was shocking. I’m so independent, and I’d been running around for seven years. I would fly home from Europe, drop off my clothes at the Laundromat, then six hours later pack up and be gone again. The idea of losing your body and losing everything—I loved my life so much, and I didn’t want it to change.
Most of the time I was treated at New York Hospital as an outpatient, but sometimes I had to stay for a week at a time. I was doing everything I could to brighten it up. I had a picture of Dr. Kevorkian over my bed just to shake up the doctors. I’d be hooked up to an IV, but I’d have on pearls and possibly a formal dress. Even when I’d go to the doctor, I’d always wear a short skirt and cha-cha heels.
Later that November I started getting steroids to reduce the size of the lesion on my brain, and I felt much better. I had stronger periods that lasted from days to weeks. My mom, dad, two sisters [Kate, 33, and Laura, 28] and brother [Jim, 37], who live nearby, really helped me through. They cooked dinner and comforted me, and my mom would go to the hospital with me. But I didn’t want anybody to worry, and I really felt ashamed that I was sick. It was completely illogical, but the idea that I needed so much help was humiliating. I told only them and a few close friends. I didn’t tell my agent in L.A.—I kept it very vague, saying I was going through some tests.
I tried to act like I was fine, but my appearance changed dramatically. I got really thin, and my hair grew really wild; because of the pain in my hands, I couldn’t brush it. From the steroids I developed Cushing’s syndrome, which is when your face swells. And I had hair loss from the drugs I was taking.
I didn’t work again for months. I had signed on as the spokeswoman for Revlon’s Charlie perfume; they knew I was sick but didn’t know what it was. That spring I’d show up at Revlon-sponsored events wearing a big hat everywhere, even indoors. I said, “Look, I’m fighting something and I don’t know what it is.” They respected my privacy, and they worked around my schedule.
For last year’s Academy Awards, I was filmed getting ready by Entertainment Tonight. I hadn’t been on TV in eight months. I was working for Revlon, and I was with the Revlon girls—Daisy Fuentes and Claudia Schiffer—these freaks of beauty. They’re in these gowns that fit like the skin on a grape, and I was inflated from steroids, so I wore a shift. While they were filming, a big swatch of my hair fell out, and the manicurist screamed. I tried to pretend everything was okay, but there were tears in my eyes.
That May I was back in the hospital on heavy steroids. I’d been on chemotherapy to reduce the size of the lesion, which was growing, but the drugs hadn’t begun working. The pain was so incredible, I would just scream. My whole body would be contorted.
Last June I finally had a diagnosis. Yeah, it was a shock—there’s not a cure for sarcoidosis, but there’s treatment. It can go into remission; sometimes it goes away. The combination of chemotherapy, steroids and morphine for pain was the most effective treatment and continues to be to this day.
I went back to work last summer doing Revlon commercials. I didn’t have an alternative—I needed to support myself. I didn’t tell anyone I had sarcoidosis of the central nervous system. I didn’t feel ready.
Right in the middle of this, I wound up falling in love with the king love daddy of them all. I’d known John for several years—we shared a beach house for three summers on Shelter Island, N.Y., with friends. We were dating other people, but he waited out my relationship with another housemate until last September. I broke up with my boyfriend on a Saturday. John called me on Sunday.
It was kind of amazing because we had spent most of our time together that summer, when I was very sick. I’d get the chemo on Wednesday and would just live in the bathroom all day Saturday. He bought a dog bed for me so I wouldn’t have to lie on the cold floor. I’d come crawling out 14 hours later and see that he had left half of my favorite sandwich, tomato on Wonder bread, on a tea saucer outside the bathroom.
I was crazy about him all along, but I was so surprised to find out I was really in love with him. But I’d say, “Listen, baby, let’s throw this thing on ice. Let me just get better, and then we can date.” He said, “So I fell in love with somebody who has a lump in their head. Big deal.” What helped me most was getting married. I was worried for him because I was sick, but John had faith in our future, and I started believing too. When I hear his keys in the door, I pull myself together. My spine straightens. He’s an elegant, genteel man—I fell in love with his manners.
Now my hair has grown back, although it’s not the same as it was, and when I’m off the steroids, my face pretty much goes back to normal. I don’t feel sick now, except that I can never feel my fingers and I have a mean, relentless pain in my neck. And my gait is sometimes impaired.
These days my routine is to go to New York Hospital on Monday and Wednesday. I still get chemo on Wednesday, and I usually walk the 70 blocks home. When you’re faced with the possibility of losing your capabilities, it’s the most exquisite pleasure.
I have a few things cooking. Revlon just signed me on as an Almay girl, which is amazing. They said, “We hired you because of your spirit.” After the diagnosis, I told them about the sarcoidosis, and I went on Oprah in March to talk about it. I was dealing with the illness, the paralysis, the pain, the drugs, the side effects. Covering it up was an added burden.
I’m not mad that this happened, but I’m not happy either. It certainly changed me. When you are confronted with the idea of a finite amount of time, your exchanges become more electric, more vibrant. I never thought I’d be sick, but I’m one of millions of people living productive lives while dealing with an illness. I’m just so small compared with the bravery and courage that I see at the hospital. You have to play the hand you’re dealt—and squeeze every ounce of fun out of every minute.