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From Behind a Cancer Teen’s Eyes

From Behind a Cancer Teen’s Eyes

Source: Spring 2005 CCCF Newsletter

Cancer sucks. It really does. It was never fun to go through. There were times when I felt like I would go crazy, or that I wouldn’t get through the day. But I did. I never lost hope. And I believe now that I have gained more than I have lost. I have been given the privilege of finding out who I can always count on, who my friends are. I have been given the chance to reconnect with old friends. I have been able to learn what is most important to me. I have learned how precious life is, and that everything on this earth is a gift from God. I am really thankful for every little thing that comes my way, whether it be a quiet day at home, a chance to see friends, a good grade on a test, or a letter in the mail. I feel good about myself, and even though physically I am not strong, I feel stronger in spirit now than I ever have. I know what it is that makes me, me. I realize that there is a whole lot of good in the world, and that miracles truly do exist, if only we don’t lose hope and we believe that, we can make them happen.

A Teen’s Perspective

My name is Caitlin. I am sixteen years old and a junior in high school. I am on the soccer team, the debate team and am involved in many clubs involving the community. I also have CANCER!

I was diagnosed with osteosarcoma of my left distal femur in early June of 2004. Luckily, we caught the cancer early and there was no sign of spreading. Man, when you have cancer things do move quickly!

One day I was in pain, another I had a tumor, next I had cancer and then I find out that I am going to get a tube in my chest! Not only is it in my chest, but it sticks out and gets in the way! Although this was very awkward at first, I knew that it would help to cure me of cancer. The chemotherapy I receive is so toxic that it can burn through my skin. So instead of let my skin deteriorate, the chemo would poison my body by entering through this tube. Funny how parents always lock the cupboards with toxic materials inside, yet they will give doctors permission to pump your body full of poisons!

I underwent two rounds of chemotherapy before I was to have my limb salvaging surgery. So, I woke up to see that I have a huge scar across my kneecap that is being held together by staples. My femur bone is now a piece of titanium and it fits into my new plastic knee! My surgeon took pictures during the surgery. It is cool to see where the tumor was and relieving to see that it is out of my body.

The next few days were the worst days I have ever been through in my life. The doctors took all of my pain medicine away on the second day after surgery. I was so numb that I could not feel either of my legs and I was just lying there like a helpless fish out of water. I had seen other kids with the same diagnosis who were not doing well after surgery. The doctors said it was because they refused to do any physical therapy. Right away, I was determined that I would do my physical therapy everyday even if I had to cry while doing it! So that is exactly what I did. Every day I pushed and pushed myself to get everything right during the therapy sessions. Many tissue boxes came in handy throughout that period!

All of it was worth it though. I can get more than a ninetydegree bend in my knee when I was only expected to get seventy. I can ride a bike, do squats, balance on one foot and many other things. However, one thing held me back from making the full recovery that I wanted. In surgery, one of my nerves was bumped, apparently, it is very sensitive and it decided to stop working! This left me with foot drop. With everything else I was going through, now I had to deal with this, too! I worked and worked to try to stimulate my nerve to come back. I had to get a brace to go in my shoe so I could walk without dragging my toes on the ground. Now, I can pull my foot up enough so that I can walk normal while wearing my old shoes. I feel that after all of this that I have come a long way and I am still going to work on making my leg work better.

Throughout this whole process, strangers have contacted me, friends have prided me, my parents have stood by me, and my whole community has helped me. They all say that I am an inspiration to everyone due to my strength and perseverance. I enjoy the praise and knowing that people believe in my ability to get better, but I do not feel that I am an inspiration at all. I just look at it as if I did what I had to do. Now that I only have two weeks of chemotherapy left, I am looking forward to making up my sixteenth year and doing everything that I missed out on while trying to be a SURVIVOR.

Tips For Teens

Excerpted from the book Bald or Shaved
by Jarrett Stein
Source: Spring 2005 CCCF Newsletter

Set goals for yourself. Each day I tried to do and accomplish more than the day before, whether it was walking down the hall, eating more protein or beating my Dad at pool. It helped me to continue to move forward when I could see the progress I was making. I also made long term goals. My major goal was being well enough to stay in the same grade as my friends, even though I missed so much school. When I knew I was working toward something, I learned to become more resilient.

Become friends with all of the medical personnel, believe in them, and know that they have your best interest at heart. I’d talk to my oncologist about baseball, my surgeon about U.S. History, my radiologist about cooking, one nurse about dogs, another nurse about stand-up comics, and my anesthesiologist about Star Wars. It felt good to laugh with them and it helped me to relax.

Be an active member of the team that is helping you to get well. Ask questions about procedures, lab results or anything else you want to know. I would even ask about what medication the nurse was adding to my IV, so I could time the dose.

Find ways to make yourself happy. Even on “bad” days, between treatments, it always made me happy to remember that I was in my own bed, rather than a hospital bed. Also, to help keep me smiling in the hospital, I always brought a picture of my dog, music to help me fall asleep, and my own pillow.

If you aren’t eating and the pills taste terrible, ask if they can be put inside an empty gel cap – they go down more easily and it masks the taste.

Realize that you have choices and that you can still make some decisions. I chose whether to be asleep or awake for some procedures, and I chose not to eat hospital food.

Stay as independent as you can. I took care of my own catheter and cooked for myself whenever I could.

I hated the smell of the hospital. To help make my room more enjoyable, I would bring extracts of smells I liked.

Something they don’t tell you before chemo, is that things you eat while you are undergoing therapy and even things you do will for some reason seem terrible after your therapy is over. My first night in the hospital I ate my favorite food—fried chicken, and I haven’t eaten it since. I also won’t eat barbeque sauce anymore. A friend lent me a Playstation 2 to distract me in the hospital and so that I could play with my brother. I haven’t been able to pick up a controller since, even now, two years after treatment (though controllers for other games are fine). So, keep that in mind.

When you are in the hospital, it is easy to get depressed and miss your home and friends. I would make specific plans about what I was going to do once I got out of the hospital, and that made it much easier.

If you are faced with what seems like an unbelievable procedure, relax and think it through. I’d say what sounded horrible about it, convince myself that if it was necessary, I’d better do it, put on my “game” face and resolve to move forward and get it done.

When you are in the hospital, try to make the best out of everything that gets thrown at you. Keep your sense of humor and stay happy; it really makes everything seem better.