Living With Leukemia
My family and I were vacationing in Cabo San Lucas, Mexico, and that's when it started. I didn't feel well, and I figured it was the heat. But on the plane back home, I was nauseated and freezing cold. The next day, my temperature was 103 degrees. My mom took me to my pediatrician, who gave me a blood test. He thought I had mono but wouldn't have the test results for a week.
By the end of the week, I was worse. I'd lost weight, and I was dehydrated. I had the most unbelievably painful leg cramps. I couldn't stop crying. My parents gave me hot compresses, cold compresses, massages--nothing helped. After three days, the cramps went away but, that same night, my nose bled and wouldn't stop. The tissues were soaked, and blood clots were coming from my nose. By the time I saw the doctor that morning, I'd been bleeding for seven hours. I was incredibly weak--when I stood up to get weighed, I collapsed. I'd lost 12 pounds in seven days. After my exam, the doctor called my mom. He was concerned I might have leukemia.
THIS CAN'T BE HAPPENING!
I knew leukemia was a form of cancer because one of my teachers had a daughter who died from it. I was more frightened than I'd ever been. My doctor sent us to a special hospital in Phoenix, over two hours from home, where I met with doctors who did lots of scary tests. Later, the doctors took us into a conference room. It was confirmed. I had leukemia.
My cancer specialist explained that I needed chemotherapy. My stomach dropped. My first question was, "Am I going to lose my hair?"
The answer was, "Yes." I thought, 'It's taken me years to grow my hair long, and now I'm going to lose it!' But I knew it was a small price to pay. I started intensive chemo, which involved injecting very strong chemicals into my bloodstream to kill the cancer. It made me so exhausted that I slept all the time. I also took steroids, which made me grumpy. My aunt called them "PMS pills" because I'd blurt out mean things and couldn't control it. The steroids also caused my face and stomach to swell, so not only did I feel sick, I felt ugly.
After two weeks in the hospital, I went home. The thought of watching my hair fall out little by little was too awful, so my aunt came up with the idea to have a hair-cutting party. Six friends came over and they were each going to cut a piece of my hair and write something about me. My sister went first, and I was like, "No! Don't cut it!" I got tired before they could finish, so I fell asleep with half my hair short and half long.
A week later, the drain clogged while I was in the shower. I looked down and saw an enormous clump of hair. When I got out of the shower, I left a trail of hair everywhere. I was going bald! I went to my mom, crying, and that night, she shaved off the rest of my hair.
Two weeks later, I had a grand mal seizure. I temporarily lost consciousness, fell down and my entire body convulsed. My mom immediately called 911. On the way to the hospital, I had another seizure, and I couldn't breathe. My mom was sure I might die.
At the hospital, they did a brain scan and found a large mass. I was airlifted to Phoenix the next morning for brain surgery. The day before the operation, my best friend Lena visited. I was so grateful she was there. But later, when I was with my dad, I couldn't hold back. I said, "Dad, I don't want to die!" I knew the operation was risky and there was a chance I'd never see my family again. My sister, parents and aunt were with me right before I went into the operating room, and I told them I loved them.
The surgery went well, and I was able to tell my family I loved them, again. I had a 7-inch scar on my head, but the mass was gone. I had to get radiation treatments to make sure it wouldn't return, which made me so nauseated that one night I told my mom to just shoot me. But I got through it. I had to.
My mom drove me back and forth to Phoenix for chemo and spinal taps every week, but I got used to it. My friends called a lot and that helped keep my spirits up. Still, when they talked about things at school, I felt so out of it. I really missed being like them! At the same time, I wondered it they realized there are more important things in life than boys. The worst was when my friends assumed I was too sick to hang out. Some kids even stayed away from me. That hurt, but I realize those people aren't my friends.
I felt like a freak--bald and puffy with a big scar on my head. I wore a wig, but only when I had to go out. When I didn't wear my wig, people stared and whispered. I wanted to say something, but I couldn't think of the right thing.
No one called me names, except my dad! That's how he deals with stuff. He nicknamed me "Q-Tip," "Cue Ball" and "Curly." It's funny, but it bothered me. It took a while for me to get over what other people thought of how I looked.
ROAD TO RECOVERY
I had enough homeschooling to attend middle school graduation last June. It made me feel like things were back to normal. It's almost been a year since my diagnosis, and I do have more strength.
Still, I can't run or cheer, and that saddens me. But I'll be back on the swim team eventually. I play viola a lot. I do chores around the house, and that feels good-even though my sister complains that I don't do enough. I see my friends every week to go to the mall or a movie.
I'm optimistic, even though I have to continue treatments. Life can seem so unfair, but I'll get through this. I've actually gotten positive things out of my leukemia. I'm closer to my family and many of my friends. My parents have been so great. Sometimes, though, I feel guilty that I put them through this.
My friends and I talk about my illness, but we mostly talk about regular stuff. I've learned not to care about my looks. My hair has grown a half-inch, and everyone thinks I look punk. I never have bad hair days! Strangers say, "Oh, your hair is so cool! I wish I were brave enough to cut my hair so short." I've learned how important it is not to judge people--you just never know what they might be going through.
For info on leukemia and how you can help, go to www.leukemia-lymphoma.org.
By Taryn, 14, As told to Sandy Fertman Ryan