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Then and Now: Shanon's Cancer Story
Shanon Steiger Gaskill was in 8th grade when she learned she had cancer. But that was a long time ago. Today she has three kids of her own and is a registered nurse. She shares her story to help kids who are struggling with a serious illness as she once did.
When they said I had cancer, I didn't even know what that meant.
When they said I had to go to the hospital, I was curious. Then I saw how upset my parents were and I was afraid. I was 14 years old and in the eighth grade. I wasn't supposed to get cancer.
Before I started feeling sick, I was just like all my friends. We overreacted to everything and had fun doing it. We talked too much about each other, about boys, and about school.
My life was about my family. We lived in a house on the side of a mountain overlooking Salt Lake City, Utah. I lived with my parents, my sister Danna, and my gram. My oldest sister, Zan, lived close by with her husband, Glen, and their 2-year-old daughter, Jessica.
For me, life was about playing sports, going to church, and being just like my friends. We ate the same foods (especially pizza) and saw the same movies, usually together. We had to be alike. It wasn't cool to be different. Then I got cancer and it made me different. I quickly found out just how different having Hodgkin's disease would make me. I didn't really care what my cancer was called. I just cared that I was sick and my friends weren't.
They could play ball and dance and laugh and go to school. They didn't have to care that the lymphatic system in their body was messed up and not fighting off infections. They didn't feel like they had the flu and a fever all the time; their body wasn't achy; their glands weren't swollen. My friends weren't tired all the time; they had no pain in their chest; they didn't sweat during the night. They didn't have to have chemo; they weren't going to have radiation; their hair wasn't going to fall out.
Cancer Made Me Feel Alone
During my cancer treatments, I felt like the only kid in the world with cancer. Now I know that about 1,700 kids younger than 20 get lymphoma each year. I know that it's the third most common type of cancer in kids and teens ages 10 to 14. I didn't know there are four stages of cancer and I had stage 3. I didn't know that stage 3 meant I was very, very sick.
It took a month for doctors to figure out what was wrong with me. They thought I had walking pneumonia and gave me three kinds of antibiotics. I had X-rays, CT scans, bone scans, breathing tests, a heart test, and lots of blood tests.
My first time to stay in the hospital was for surgery to remove fluid from around my heart. I cried because I was afraid. The doctor explained that I would be asleep when they put a needle in my chest to suck out the fluid. After the surgery, I cried because I was afraid to be alone. My nurse was very nice. She let my mom sleep in my hospital room in a big chair by my bed.
All those tests didn't tell the doctors enough. They had to do a biopsy to check my lymph nodes. I cried again. The biopsy wasn't bad because I was asleep. Afterward my neck really hurt.
I wasn't a good patient, either. I was angry, scared, and mean to my whole family. I cried some more. I even cried because they wouldn't let me eat. The IV in my arm fed me sugars, salt, and other stuff. I wanted peaches. When they finally let me go home, we went right to the hospital cafeteria and got some peaches. I only ate a little bit.
My worst fears happened. My sister Danna told my friends that I had cancer. I didn't want anyone to know. Zan told me I was hiding my cancer. I guess I was. I didn't know any other way to deal with it. I worried that my friends wouldn't like me when my hair fell out.
My first treatment was on January 31, 1991. I went to Primary Children's Hospital for all my tests and my chemo. Everyone was so nice to me. They explained everything they were going to do, but I was still really scared. I always had chemo in a small room with a TV and lots of books and games.
My oncology nurse gave me four chemo medicines through an IV in my arm. The four medicines had long names, so they called them "ABVD" because one started with an A, one with B, another with a V, and the last with a D.
At first I didn't feel a thing. I started thinking I might be one of the kids who don't get sick from chemo. Boy, was I wrong! As soon as all four medicines were in, I started feeling strange. I threw up on the way home. The oncology nurse knew what would happen. She gave me a little bowl for the trip home. I threw up tons! I threw up so hard my knees would hit the floor.
Danna would hide in her room with her stereo turned way up to drown out my noise from throwing up. I always felt sick, off and on, for a couple of days, but no more throwing up. (Today, I'm happy to report there are helpful medicines kids can take to control or stop that sick feeling.)
After the first chemo treatment, I decided to have a semi-permanent IV line put in my arm. When it was time for chemo medicine, they could just tap into the line without having to stick me with a needle. But I didn't like that it made me different. People would see it poking out of my arm.
I Stopped Going to School
I started to miss a lot of school. Sometimes I missed all day. I'd check out early on other days. I was tired all the time. School just wasn't going great. Gym class and dance class were hard. I didn't feel like dancing and playing games. I didn't want my teachers or any kids in my classes to know about my cancer. My mom told my teachers anyway.
I got really worried that my hair would fall out at school. I refused to go. My parents gave in and let me have home schooling. A teacher from my school came once a week. He brought work from my teachers, answered my questions, checked my homework, and took everything back to school. It wasn't great, but it worked for me. My hair never completely fell out during chemo. It got really thin. So did my eyebrows. I had to cut off my long hair. I hated it short. And I hated the idea of wearing a wig.
I missed a lot of fun stuff during my treatment. I would have been in a play, but I had to have chemo on the day we were to perform. I missed my church summer camp, too. Primary Children's Hospital and the American Cancer Society had a camp for sick kids. I got to go, and I could take one person with me. I took Danna. The nurses took care of us. I loved it.
We did all the usual summer camp stuff — swimming, games, campfire nights. And it was a good break from real life. At cancer camp, everyone was going through the same thing and if your hair didn't look good, so what.
The time at camp was a bright spot, but my illness was really hard on my family. My dad was the person who suffered most from my tantrums and awful behavior. Dad seemed to always be positive that I would be fine. Sometimes I could see that he was worried about me. That scared me most, because I actually believed my dad knew everything. If he worried, I worried. I kept all my feelings to myself and just acted meaner.
I knew Danna was having problems because she wasn't getting any attention. I wanted it all. She started to argue with my parents and skip school, but she always tried to be nice to me. I never worried about my mom. I just expected her to be there for me and she was. My whole family was there for me. So were my friends.
Toward the end of the summer, when I had been sick for about 7 months, I started noticing how much I had changed. I wasn't nearly as dependent on my mom as I used to be. My summer had actually been lots of fun. I volunteered at the neighborhood hospital and got to wear a "Candy Striper" uniform.
And my last chemo was coming. On the only day I actually wanted to have chemo, I got bumped. Two days later, I got bumped again. My blood count was low because I had gotten a cold.
On August 16, I finally got the IV line taken out of my arm. I didn't need it for radiation, and I decided to have my last chemo without it. Afterward, my whole family went for ice cream and I got to go swimming for the first time since the IV line was put in.
I Am "Whistle Clean!"
After I finished all 12 chemo treatments, my X-rays showed no cancer! Eight months after getting sick, my oncologist said, "Good news! You are whistle clean!" I was so happy, I wanted to bawl.
Then they tattooed me. That's how they marked the spots for radiation treatment. I had eight dots tattooed on my neck and chest. They will never go away, but people don't notice them because they are so tiny.
I had to have radiation just in case some tiny cancer cells were still lurking in my body. The X-rays showed I was whistle clean, but maybe there were cancer cells that the X-rays didn't see.
On September 16, 1991, I started 3 weeks of radiation treatments. They weren't so bad. They made me really tired and I slept a lot. Two days after my last treatment, all my hair totally fell out from the lower back of my head.
We went back to the wig shop. I still hated the wigs. Instead, I got a big bow to pin on the back of my head where it was bald. It helped. When people noticed that my head was bald in back, I told them I shaved it. They stopped asking.
My radiation treatments ended and my hair eventually grew back. The time between doctor appointments and tests also grew. I was seen every 3 months, then every 6 months, and eventually once a year. All the blood tests and chest X-rays came back negative. I was fine. I was cancer free.
Fast forward to today. I'm thankful every day that I have been so lucky. I'm 31 years old and have three great kids. I believe I'm a nurse because of my cancer experiences. When I was in the hospital for the first time, my nurse in the intensive care unit was wonderful. Her name was Lee and I still remember her. She helped me make it through the humiliation of using bed pans (a kind of toilet you can use in bed). She hugged me when I cried.
I knew then that I wanted to be a nurse just like her. Today, I'm a registered nurse and I work in labor and delivery. I love taking care of the mothers. It's amazing to see the babies being born.
My Advice for Other Kids
I've been wondering what I would do if I had to go through it again. I would try to embrace being different. As an adult, I like having something about me that is unique. I don't mind discussing it with people. I don't mind their questions and attention.
I hope I would be nicer to everyone. I would try to laugh and have fun and smile. I wish I had talked more with my family and friends. It took me a long time to realize I needed to confide in people. I wish I had told them I was afraid.
I wish all kids would keep a diary. I felt better every time I wrote in my diary. I know now that it's OK to be angry at cancer. It's not OK to be angry with your family and friends. And it's OK to cry. Crying always made me feel better.
Today, I'm turning my diaries into a book for kids who are sick. My book is also for their families and friends who go through all of it with them. When I had cancer, there were no books to answer my questions. I hope my book will make it easier for kids who are young and sick and scared.
My diaries are a reminder to me that I, Shanon Steiger Gaskill, am a cancer survivor. I fought cancer and I won! You can, too! Be strong!
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