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A CANCER FIGHTER BECOMES A CANCER VICTIM

Nelson Hughes was sharing a pizza with his laboratory co-workers when he noticed the first sign.

Someone was talking about the Red Sox. Hughes leaned forward to hear, resting his jaw on his fists. He felt a hard lump in his neck.

Hughes called his family doctor, who told him to wait a week. The lump got bigger. Soon, it began to press against the nerves in Hughes' jaw. A few weeks later -- it was June 24, 1995 -- Hughes went in for a CAT scan.

The following Tuesday, Hughes waited nervously for the phone call that would bring the test results.

For more than 20 years, Hughes has spent his workdays in a small lab in Amherst, screening slides of cell tissue for signs of cancer.

Despite that familiarity, he found himself unable to answer the phone that Tuesday. His wife, Patricia, took the call that began Hughes' experience fighting lymphoma -- the third most rapidly rising form of cancer in America.

Hughes agreed to tell his story because -- as a cancer sufferer and as one who works in a cancer-related field -- he wants to spread knowledge of a disease whose cause is unknown and which often has no symptoms until its advanced stages. In doing so, he is helping the Lymphoma Research Foundation of America with its second annual National Lymphoma Awareness Week.

One form of lymphoma is Hodgkin's Disease, which is the easiest to treat. Hughes has one of the 25 other forms.

Hughes' battle with lymphoma isn't over yet, but he's approaching the critical two-year survival mark. He's become a counselor for other lymphoma patients and is lobbying for a public park to be put in downtown Buffalo as a memorial to those who have suffered from lymphoma.

"It's an odd disease," says Ellen Glesby Cohen, the president and founder of the Lymphoma Research Foundation of America. "It can be chronic at times, but you'll look fine. You can go to work, but you have this cancer inside you, eating you up."

Ms. Cohen started the foundation after being diagnosed with lymphoma while pregnant with her second child. Though married to a physician, Ms. Cohen's lymphoma went unnoticed for months: her blood counts were normal and a needle biopsy of a lump revealed nothing. Ms. Cohen eventually learned that she had a low-grade but incurable form of lymphoma.

"Lymphoma needs to be a household word," she said. "Early detection is still advantageous. If you haven't been feeling right and you do have a (swollen) lymph node, seek medical advice. And don't be put off if the doctor consistently brushes you aside."

On the Tuesday night that Nelson Hughes received the results of his CAT scan, his disease still was not diagnosed.

"All they told us was it was a lymph node," Mrs. Hughes remembers. Surgery was scheduled.

By July 3, the day of the surgery, the lump had more than doubled in size. Hughes woke up with a scar four inches long on the left side of his neck.

The bad news, said the doctors, was that they had only removed some of the node, since it had attached itself to Hughes' carotid artery. The worse news was that it was cancer of the lymphatic system: lymphoma. The good news was that treatment might work.

The next day, Hughes went to a Fourth of July get-together with his family.

"I wasn't sure how I'd respond, whether I'd be emotional," Hughes says. "But I did go. It wasn't all that bad, I never broke down."

Hughes -- who believes that exposure to Agent Orange during the Vietnam War caused his disease -- displayed none of the usual warning signs: fever, night sweats, fatigue and weight loss.

Hughes was 45 years old when he learned he had lymphoma, which attacks approximately 85,000 people per year and kills about half of its victims.

A hefty man with dark hair and a brown beard, Hughes is a hunter and outdoorsman who cleared the trees from his 10-acre plot in Orangeville with a Sears chain saw. In 1992, he began building the log house in which he and his wife live with their three daughters. Hughes was about to finish the basement when he began undergoing treatment for cancer.

The chemotherapy stripped him almost totally bald and beardless within a week.

"Every morning, he would wake up, gather all the hair off his pillow and come downstairs with it in his hands and say, 'Look at this!,' " Mrs. Hughes recalled.

The doctors found another node in Hughes' pelvic region: a bad sign. There were more CAT scans. There were gallium scans, which require enemas. There was a bone biopsy, which involves chipping bits of bone out of the lower back.

Hughes needed so many intravenous fill-ups that doctors installed a "medical port" in his chest that led straight to his heart.

Hughes spent many an hour sitting like a car attached to a gas pump. Nights, he woke up frightened that the port had popped open. The delicate opening was on his right side, in the very spot where he once rested the butt of his hunting rifle. Deer season passed him by that year.

"I remember hunting boots were on sale after the season," says Hughes. "I thought: 'Do I bother buying them? Will I be here next year to use them?' "

Hughes admits: "I'm a pessimist. For me, the glass is always half-empty. But positive thinking is important. So the thing is, how do you change attitudes?"

Hughes decided to use humor. He showed up for chemotherapy wearing a metal Civil Defense helmet. He joked that he spent so much time in a hospital gown that he should sell advertising space on his rear. After the chemotherapy, he would tell the hospital technicians, "Stick a fork in me, I'm done."

"It's corny," Hughes admits, "but it helps."

Hughes has also been helped by the lymphoma foundation's Cellmates program, a national support network of lymphoma patients. The Cell Mates program puts lymphoma patients in contact with others of similar ages and backgrounds.

Because Hughes believes Agent Orange caused his disease, he was put in contact with Frank Brown, a retired veteran living in Virginia. Researchers do believe that environmental toxins play a part in the disease's development; they have determined that it is not genetic.

"Because I've been around so long, people look at me with hope in their hearts," says Brown, who already has lived beyond his doctors' predictions by seven years.

"My experience says that it's best to just let them talk out their fears . . . I talk a little bit, but mostly I just listen and say, 'Look at me, I'm here.' "

Throughout the ordeal, Hughes has never stopped working.

"I always knew the importance of my work," he says, "but now it hit even closer to home. I can hear the doctors when they dictate, describing tissues."

He adds, "It's funny how I hear those terms. I've heard them most of my life. Now they sound just a little bit different to me."

Hughes has his hair back, and his beard. He has begun teaching hunting classes again. He still hopes to finish building the basement.

But in late June, Hughes received a letter from DeGraff Hospital informing him that a recent CAT scan revealed a one-centimeter node in his chest. Further tests will be done to determine the course of treatment. More chemotherapy is a possibility, though it doesn't always work for relapses. Hughes is also considering a bone-marrow transplant.

"It's the old cliche," Hughes says about his feelings, "you take one day at a time. You don't take anything for granted anymore."

"Right now, fall's coming up. And I've always loved fall. And I love Christmas, it's a great season to be outside. And everything looks good."

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