Cancer patient turns advocate

For many people, facing the diagnoisis of cancer means facing the end of their life.

For Jerry Crum, it was time to become an activist.

Crum, 51, of Carson City, was diagnosed with mantel cell lymphoma in December 1997 and was given up to 18 months to live. All things considered, two and a half years later he feels pretty good.

Obviously, being alive is a good thing, but trying to help others with cancer has become his new passion. It will take him to Washington, D.C., today to continue his efforts.

About 20 percent of Crum's bone marrow is riddled with cancer and with that, many of his organs as well. Fortunately, his cancer is in an "indolent stage' - present but not very active.

"I don't feel like I'm dying today," Crum said. "Am I dying? Statistically, yes, but I'm a very lucky guy.

"Cancer is a thing most people don't want to face until it happens. When you just get the diagnosis, you're in shock. It's a tremendous thing.

"Like anyone who gets that shocker, you're looking around for anyone to help you. All you saw at the time were awareness groups for breast cancer and prostate cancer, which wasn't going to help me. It occurred to me that there was something stimulating that energy."

Crum found a greater support network on the Internet, finding information and support groups dealing with his type of cancer. He also discovered that one of the reasons for the movements behind breast and prostate cancer was that both went through what is called a progress review group sponsored by the National Cancer Institute. The review creates a national action plan which sets out goals for research, identifies barriers to progress and raises scientific questions among other things.

One thing Crum noted right off was a need for greater amounts of research on treatments that could lead to a cure of lymphoma and other cancers. A progress review group for lymphoma could do for his cancer what it did to provide breakthrough advances in breast and prostate cancer.

Lymphoma, a cousin to leukemia, is a cancer that attacks a network of glands and vessels, including the lymph glands. Because the lymphatic system lies in several parts of the body, lymphoma can spread into other organs and bone marrow. It will strike an estimated 87,000 Americans this year and has a 50 percent mortality rate.

Crum became involved with the Lymphoma Research Foundation of America, a nonprofit institution dedicated to education as well as supporting research to cure the more than 30 different types of lymphoma.

The group also sponsors a Lymphoma Advocacy Day on Capitol Hill in Washington, D.C.

Today, Crum will head to Washington to meet with Nevada's congressional delegates to ask them to back a bill for 2001 that would send more federal dollars to lymphoma research. Sen. Harry Reid, D-Nev., and Rep. Jim Gibbons, R-Nev., have both signed on to the idea.

On Wednesday, Crum will be present as Reid receives an award from the lymphoma foundation to honor his commitment to health care issues.

The National Cancer Institute funded in 2000 a progress review group for lymphoma and Crum is hoping Congress will continue that funding.

"Science is the only thing that will give us the answers, and more money will always help that," Crum said.

"We lose more people to cancer in a year than we have in all the wars of the 20th century," Crum said. "I don't think it gets dealt with the way it should. Why aren't we doing more?

"Somebody has to be working on this. If not the person with lymphoma, then who?

"When you get told you're going to die, you think about a lot of things. I guess one direction you could take is, 'I'm dying, why should I worry about cancer advocacy?' Another direction and the one I've chosen to take is that I understand lymphoma and I understand how it feels to be told you're going to die. With that knowledge, I want to get something done. It's my problem, and I feel a responsibility to do something about it.

"I have a finite amount of time and energy, and this is how I choose to spend it."

Crum also wants to help in research that may someday lead to a cure to the disease that changed his life.

"For the type of lymphoma I have, the bottom line is there is no cure," Crum said. "The only hope I have is some sort of experimental procedure that other people have sacrificed for. They were willing to put themselves on the line. You may die, but you pass on the torch. That means you have to be willing to take the torch."


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