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- What Matters
Independence truly matters. The problem is that people don't realize how important it is until it is lost. I have brain cancer, and as scary as that sounds, it is the simple things I used to do on my own that I long for. I want to walk around and go to the mall without my wheelchair. I would love to go to a party and just have fun. My reality, however, is that someone has to carry me to the bathroom and help me with stairs. Last year over Christmas I couldn't move at all.
Another thing that matters to me is time free from pain. To complete my chemotherapy, I had to endure 30 transfusions, radiation treatments five days a week for six weeks, four spinal taps, a bone marrow test, blood tests twice a week for 60 weeks, and 163 shots in the leg. In addition to the dreaded needles, cancer caused my body to malfunction. I developed kidney stones, cataracts and suffered seizures and hemorrhages. I required four brain operations. Nevertheless, I survived, and perhaps that is what matters most - I am still here.
I think I know the secret to my staying power - humor - it gets me through a lot. Sometimes I scare my nurses with fake spiders, or embarrass my doctors with a remote-control fart machine. I often wear a transfer tattoo on my bald head (my favorite is a big black scorpion) and I give gross jellybeans to my doctors. For example, my chemo doctor received a vomit-flavored jellybean and my audiologist got one that tasted like ear wax.
I like to play practical jokes on friends and I love to laugh. Another way I have fun is playing video games, or following sports teams. I play cards with friends and am almost unbeatable at Hearts. I especially love the North Carolina Chapel Hill Tarheels. I follow their basketball and football teams. I try to stay active. I like to play golf, but Tai Kwon Do was my favorite sport when I could muster the strength. I earned a second-degree black belt before I had to
I love animals and have a special relationship with Louis, my cocker spaniel. He seemed to sense something was wrong even before my cancer was diagnosed, staying by my side in an unusually quiet way. In fact, the Kansas Veterinarian Society recognized him as the Co-Pet of the Year. Louis showers me with love, loyalty and companionship through the hard times as well as the good.
While I don't get to socialize with friends as much as I'd like, there are friends who come to visit. I met members of the football team freshman year (when I was well enough to go to school) who have stayed in touch and visit often, giving me a glimpse of normal high-school life.
I am usually relating to my army of doctors. One favorite is Dr. Wu, a radiologist from China. I love his accent and sense of humor. Dr. Shah, from India, is my neurologist. He monitors my seizures and makes sure I keep function in my feet. My audiologist, Dr. Kenyon, supervises my hearing aids and checks my hearing. I enjoy talking about sports with him, since he is a North Carolina fan. Dr Rosen is from South America, and monitors my chemotherapy. The Japanese Dr. Huang is a pediatric urologist, and Dr. Smith works in pediatrics in the Intensive Care Unit. My neurosurgeon, Dr. Abay, is from the Philippines. My optometrist, Dr. Simon, is very important since his diagnosis of fluid in the brain probably saved my life. His colleague, Dr. Kingrey, recently performed my cataract surgery.
The final member of my health team is a Canadian, Dr. Sunderland. He is my ear, nose and throat man. I am sure these are more doctors than most see in their whole life. It is interesting that my team is so multicultural. These people matter to me and I matter to them.
Yet, not as much as I matter to my family. We have all had a hard lesson in what matters. Discovering a child has cancer must be devastating. My dad and I have always done a lot of things together and he wants everything to be like it was so he tends to push me a little. I know he does it out of love. In that way our relationship is like every dad and son. My mom handles her grief differently. She is upset but dedicates herself to entertaining me and keeping me comfortable. Since this is a full-time job, she suffers financially as well as from sleep deprivation. Yet, she doesn't complain. In fact, it seems as if she clings to every moment we have together. Our family is like many others in that my parents are divorced. Though it is difficult, we manage.
My sister Lindsey is another important person in my life. Before I had cancer we argued a lot. I don't think Lindsey handles my cancer too well. Maybe it's been hard to see me getting so much attention. She's nicer now, but I still think she struggles a little. In spite of everything, she is important to me.
I don't want anyone to feel sorry for me because I have had some great experiences. Mark Simoneau of the Philadelphia Eagles flew my mom and me to Philadelphia to watch their championship game against the Carolina Panthers. We watched from the comfort of the wide receiver's box seats. The cheerleaders visited me, and Mark and I became the best of friends.
I want to challenge all of you to look around and really examine what matters. I think most will find that it's the many things that are taken for granted. I am blessed because I don't take anything for granted and have discovered a lot about myself. I know I am a fighter and not afraid of much. Whatever is ahead I intend to face in the same way I have faced cancer. My advice may sound like a cliché, but it is heartfelt: Have fun; live for the day at hand; don't worry about small irritations; get out and do the things you want to do now. Live your life with passion.