Lynne M.

Diagnosis: Neuroblastoma diagnosed at age 17 months
Treatment: Surgery, radiation and chemotherapy (Cytoxan and vincristine)

Diagnosis: Osteosarcoma (growth on hip), 1983 at age 15
Treatment: Removal of tumor, resection of ilium, radiation, chemotherapy

Profession: In charge of patient and family services of the Northeast Region for theAmerican Cancer Society

My cancer, a neuroblastoma, first appeared when I was 17 months old. My mother discovered the lump while changing my diaper. It was around my aorta. I was diagnosed as terminal. They're not quite sure why I didn't die. They didn't expect me to live more than three months. I'm in all those medical books. I'm an only child and my mother is a single parent. She's very religious. I call her Rita the Nun.

Radiation stunted my growth so I'm a short person. My lungs don't work to their full capacity. Walking upstairs is hard. I don't do anything physical that would make me breathless. My second tumor, when I was a teenager, was on the hip. They said it was caused by radiation. I don't like to tell people the cause because that wouldn't happen today and I don't want to scare them. I was a freshman in high school and I was in pain a lot. I kept complaining that my leg hurt. They said I needed a psychiatrist. I was never sick growing up. But my pediatrician said, "Take her back, she's not a complainer." So the last test they did was an X-ray and it showed a growth in my hip. They said it was nothing to worry about. That was March of 1983. We waited until July for a follow-up. We thought of suing that hospital because I was misdiagnosed. When we went back to that same hospital for another X-ray, the growth had increased 30 percent. I think I was clueless about what was happening. I knew growing up that I'd had cancer as a baby. A pretty good scar on my stomach reminds me of the cancer every day.

So they immediately put me in the hospital and did a biopsy. That hospital wanted to amputate from the hip down. My mother didn't feel comfortable with that hospital because of the misdiagnosis. She brought me to Dr. Mark Gebhardt who said he could treat me at Mass. General. He gave my mother the choice of amputation or removal of the ilium, the big wing-looking bone of your hip. I had no idea what was happening. I found out maybe six months later when I read my chart. I drove the nurses crazy but it was my right to read my chart. My mother asked the doctors if it were their child what they would do.

They went around the table and all said amputation. Dr. Gebhardt said he didn't know what he'd do. He's an amazing person. He's probably the only doctor I trust completely. I'll do anything he tells me to do. Doctors gave me a 50-50 chance either way so my mother went with her gut feeling, resection of the ilium. But microscopic cells remained. Then I had radiation. The bone graph got infected so they removed it. Then I had chemotherapy. Again, they gave me three months to live.

I have a huge space, just air, where my hip had been. I was never a candidate for hip replacement. There was nothing for it to be screwed into. They told me I'd never walk without crutches or a cane. I said, "No way." I was a very difficult patient. Anything they told me not to do, I did. Now that's a burden. I have to do well. When I got hit by the truck and Dr. Gebhardt would come within a five-mile radius of me I would burst into tears because I felt I was letting him down. Dying or doing poorly is not an option for me. I always do well. I never understood this burden until I was hit by the truck. Even with friends and family I'm the one who never complains. People get nervous if I start complaining. It's not easy being me.

Now I'm in chronic pain. Until recently, I didn't take pain medicine. Eventually, I ended up at the pain clinic. It was a matter of quality of life. They put me on a bunch of medications to get it under control, which took six or eight months. Then I got cocky and stopped taking it. Now my pain is coming back again so I may have to go back on the medicine. It was a trauma admitting I couldn't cope. But that was a turning point for me.

As a teenager, I continued going to school, even on chemo, and I still went out with my friends. I stayed as normal as I could. I refused having a psychiatrist. I saw one once and I was mean to her. They ask all these stupid questions like, "What's your favorite color?" I think I said orange and black, and I said asparagus was my favorite food. It's strange: Now part of my job as an adult is helping people, and as a teenager I wouldn't be helped.

At Mass. General I was on the kids' floor, in an adolescent ward. It was one big family. I had some really good times, sick and all, and I still talk to some of my nurses. We'd have wheelchair races. I was very religious while on chemo. My mother took me to healing Masses every Sunday. I was on crutches at least a year. Then they put me on a cane but I walked too fast for it. What they eventually learned was my stomach muscles compensated for the muscles that were removed. So I just walked.

I was supposed to wear a lift because my leg is two inches shorter than the other. I hated it. I used to walk on my toe to compensate. I felt I wasn't handicapped. I could have had handicapped plates but I didn't accept them until I had the truck accident. I'm pretty stubborn.

As a teenager, I really didn't think of dying. None of this hit me until my senior year in college when a pretty serious relationship ended. At the same time, I was looking for a job. Major life changes bring on the realization of what you've been through. Until my senior year in college I wasn't big on talking about my cancer. Then I began to understand that having survived cancer was something to be proud of. I was a journalism major and I wrote about it. One professor asked me to talk about it but I wouldn't. I think it was a trust issue. I thought people would think differently about me when they heard I'd had cancer. It was four years ago that the truck ran over me. I had just left an orientation meeting to be a volunteer on the oncology floor at Mass. General. A truck and car were double parked and I was crossing the street. Nobody was in the truck when I started crossing. I heard a car door slam and the next thing I knew, the truck was driving over me. I remember panicking completely that I wasn't going to be able to walk. I swore. I was laying in the street and I was temporarily blind. I started saying, "Take me to Mass. General, to Dr. Gebhardt. I don't have a hip." Someone said, "She's hallucinating." I felt closer to dying than I ever had with cancer. It was the first time I saw my mother cry about my health. There were about 20 people in the emergency room. I had a broken collarbone, my lung was punctured, bladder punctured, part of my sacrum was shattered, and I fractured my good hip. The truck missed my no-hip.

I was in the hospital two or three months. I've had last rites three times. Today I'm partially numb from my knee to my hip. I get shooting pains and I have pins and needles on the whole leg. But I'm used to it. I met my husband, Steve, at the American Cancer Society. He's very supportive. He was one of the first people I dated who I told I am a cancer survivor. I knew I could trust him. I also have two beautiful stepchildren, Stephanie, 7, and Timmy, 6. I already have them volunteering for the American Cancer Society. Even though they're young, they already understand the importance of helping others. At the American Cancer Society, I feel I'm making a difference. If I had the opportunity, I don't think I'd change anything in my past. Being a cancer survivor gives me a very different perspective on life. I see things differently than most of my friends and I know what's important in life. Surviving cancer gave me that and I'm a better person for it.