Cancer Patients

‘I Survived Childhood Cancer’

The following is a guest post from Jessica, cancer survivor and training manager at Diplomat.

 

I was 13, on spring break and almost done with seventh grade. I was on vacation with my family in Florida in April 1999, going to the amusement parks and riding ride after ride after ride. Everything was normal.

Suddenly, I was in pain.

I’d just gotten off a bumpy rollercoaster when I noticed throbbing in my shoulder. I thought I’d hurt myself on the ride’s safety strap. I reached up to touch my shoulder and felt a lump the size of an egg.

Later that night, my mom put a hot towel on it to try to get it to go down, but it didn’t help. It continued to throb. I was scared.

When we came home from vacation a few days later, my mom made an appointment for me to see a doctor. He examined my shoulder and told me I had to see a specialist. I could tell he had an idea of what it was but wanted to send me for tests. I saw a specialist at the pediatric hematology/oncology center at the local medical center. He scheduled me for all kinds of tests—CT scans, X-rays, a gallium scan and blood samples. They scheduled a biopsy of the lump on my shoulder.

At home in our living room, my parents sat me down to break the news. My mom cried as she told me the doctors thought I had Hodgkin’s lymphoma, a type of cancer. Then I cried too. My parents let me cry for as long as I needed and then sat me down again. They told me it was going to be hard and I had to be tough. I couldn’t act like a teenager anymore.

When I was upset about all the things I wouldn’t be able to do anymore, my dad said, “Well, we’ll have to put the reins on you for a little while, but eventually, we’ll be able to let you loose.”

I understood that I had to do what I had to do to get healthy.

The next day, we went back to the hospital, where they further explained the potential diagnosis. Samples were taken from my shoulder, organs and bone marrow to see if the cancer had spread. The test results came back. It was indeed Hodgkin’s lymphoma. The cancer was in my neck, chest and abdomen and diagnosed as stage 3.

I don’t think I’ll forget that day.

Just one week later, I had to go back in to get a port put in so I could start chemotherapy as soon as possible. The doctors told me I would lose my hair and, because it was so thick and long at the time, suggested that it might be easier to cut it short. “It doesn’t fall out so quick that way,” they told me. I went through six rounds of chemotherapy. I would spend the day in the hospital having IVs going of chemotherapy and then have two weeks off. For the first week and a half, I was sick from the chemotherapy and physically tired. About the time I would start feeling better from the treatment, it was time to do it all over again.

 

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Side effects shook my self-esteem.

I got down to less than 100 pounds. There were times I had to take steroids (as well as the chemotherapy) to help me gain a little appetite. I was very emotional during this time. I couldn’t hang out with friends. I couldn’t go to the store. Basically, I couldn’t go anywhere public because of germs. When I did go out, I had to wear a mask. My mom threw away our plants because they could house germs my weakened immune system couldn’t handle. And my mom was very cautious about my eating fresh fruits and vegetables. They can carry germs, too. If I did eat fresh fruits or vegetables—which was rare because my parents were so careful—we had to wash them thoroughly and even peel and wash them again first.

I didn’t look like myself. I lost my hair. When I say I lost my hair, I mean the hair on my head, my eyebrows and even my eyelashes. The chemo darkened my skin and caused pigment changes. My nail beds were purple. I looked like I was sick. I was smiling, but I wasn’t happy. I didn’t want anyone to see me and I didn’t want to see the way I looked anymore.

I have no pictures from when I was sick, between 1999 and 2000. My family would always try to get me to take pictures when I was bald. I did let them take one picture—no hat, nothing covering my head. When I saw it, I tore it up and threw it away (I don’t think my parents knew, but they do now).

After a couple months of treatment, I had spot checks of tests to make sure the chemotherapy was shrinking the nodes. It was.

I was happy and nervous at the same time, waiting to learn if I was in remission. I had all kinds of questions running through my head. Did the chemotherapy work? Will I have to have another cycle? What’s next?

When my doctor said I’d completed chemotherapy and was ready to start radiation, it was a great feeling. That meant that after a couple weeks—when my blood counts were back up to an acceptable level and I got cleared—I could go back to school while I was I taking radiation treatment.

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I thought radiation was going to be a piece of cake; it’s just an X-ray, right?

Radiation wasn’t the best, but it wasn’t chemotherapy. I received radiation therapy to my neck, chest and abdomen (specifically targeting my spleen). At the beginning of radiation, I was told that after the completion of treatment, my spleen would no longer be a functioning organ and that later in life I might have thyroid problems, as I had radiation directly to my neck. The radiation to my neck made it hard to eat because my throat was so irritated. I could only eat soft foods and things that would soothe my throat. Also, the areas exposed to the radiation were extremely sensitive, especially my neck. But it was temporary.

 

I was finally back to normal.

Going back to school was a big step. When I was able to return to school, I still had no hair. So, I was returning as an eighth-grader in high school, fearful of what people would think of how I looked.

I always wore a white bucket hat. It had to be a bucket hat, because the rims covered the part of my head where you would usually see the edges of your hair. It made me feel more secure. Some kids would ask why I got to wear a hat in school. Some kids tried to take my hat off my head when I wasn’t looking. They thought it was funny, but to me, it was serious.

 

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I knew who my true friends were. They would tell others to leave me alone. They told me they missed me, asked how I was feeling and if I needed anything. They didn’t judge me.

To my surprise, it wasn’t too bad going back to school. I even met new friends. And who would’ve known at the time that I would start going out with a cute boy when I had braces and no hair?

I continued my daily radiation, monthly routine visits and follow-up tests. Things were going well. I was getting back into the groove of school and being a ‘normal’ eighth-grader.

Years later, about the middle of my junior year of high school, I went to a routine check-up. My doctor felt my stomach and asked if I was constipated or even if I was pregnant. I told him “no.” He scheduled my gallium scan right away. I wasn’t even out of my scan when the doctor went out to the waiting room to tell my mom that my Hodgkin’s had come back.

Read the rest of Jessica’s story on Tuesday.

The information herein may not be construed as medical advice. The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. It should not be used as a substitute for professional diagnosis and treatment. It is best to obtain medical recommendations from your physician.

 

 

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