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I became a cancer survivor when I was diagnosed on May 29, 2003.
I went to the doctor for a regular X-ray because they thought I had asthma. They told my mom that there was something wrong in my lungs. I had a CT scan and they told me that I had cancer.
The tumor was in my upper right ribs, in the back. They put in a port, so that they could give me chemotherapy. In August, I had a surgery to remove the tumor, and it had spread to my lungs. They took out the whole middle lobe of my right lung. That was about 20% percent of my right lung’s breathing capacity. I don’t really notice it, though. They also had to take one of my veins out because it was clotted because of the tumor. They stripped some of the nerves in my spine, so I couldn’t really move my arm that well. I also had surgery to take the cancer in my left lung out. I’ve also had minor surgeries to put in different ports and to take out everything again. And I’ve had a lot of chemo. It wasn’t very fun. I’ve been in remission about a year.
When they removed the tumor on the right lung, they took out two or three ribs and my spine moved into the space, so I had severe scoliosis. In July 2004, I had scoliosis surgery to correct my back. They fused my spine from T1 to L1. There are two rods on each side of my back where there are about thirteen screws on the left and four on the right. Since they took out a lot of soft tissue, you can sort of see it on my back because it’s almost at my skin. We’re hoping to remove some of that because it’s painful for me, and it’s doesn’t look very nice. The scoliosis surgery was one of the ones that affected me the most afterwards because I was done with most of my stuff for cancer, and then I had to have more surgery. And I didn’t like it.
Since I was on cancer medication, it took some of the calcium from my bones and the chemotherapy has diminished my bones a little bit. So I’ve had a few stress fractures around my knee areas. I was on crutches for six weeks about a month ago because of pain in my legs and the stress fractures. If I have any injuries, it usually takes a lot longer to heal. Before I got diagnosed, I played a lot of sports and that was what I did. But when I got sick, I started to oil paint, so that’s become a bigger part of my life. I do that sometimes instead of playing a sport. I also entered theater this spring because I broke my leg, and I couldn’t do track like I was supposed to.
I’m pretty much doing anything I can to help it. Every three weeks, I get a drug to take the calcium out of my blood and put it in my bones. So I take calcium supplements four times a day to keep some calcium in my blood. It’ll probably be okay by the time I’m older, but the doctors haven’t really said anything about it yet. I’m very anxious to know when I’m going to stop being on regular treatment. I’ve been in remission about a year, so they said when I’m in remission about two years, they’ll consider taking me off it. So that’s not so bad.
I wasn’t that upset during treatment. But afterwards, because of the way that people reacted to me, I had a little bit of trouble with friends and family, whether it was the way they were acting towards me or whether I felt different, as a person. When I was sick and then afterwards, some people were nicer to me than they normally would’ve been. That bothered me because I didn’t want them to consider me anyone else other than a regular person. I was normal again - I wanted for everyone else to think of me as normal. It hasn’t always been like that, but it doesn’t bother me as much anymore.
I don’t really mind going to the doctor or going for checkups to see if I have redeveloped cancer. I’m not really worried about it because I assume that I’m not going to have it. But I have a lot of family members and friends that are very anxious before the scan, and they’re always wondering what’s going on. There are a whole lot of phone calls when we go for the scan trying to figure out what went on. But so far, everything’s been fine. So I’m happy.
My family had to change because my parents had to spend a lot more time with me in the hospital. My sisters had some issues with that. My older sister still is a little bit uncomfortable with what happened during the year that I had to get treatment. I enjoyed having my parents more, obviously, but I’m okay with my sisters having more attention now because I got it a lot last year. So my family has changed a little bit, but we’re getting back to normal again, and I’m fighting with my sisters again. We’re pretty much a normal family now.
My mom made me see a psychiatrist and psychologist sometimes when I sick because I wasn’t very happy. But I was pretty much okay once it was over. I was on prescriptions for a little while, but low doses just to make me feel a little better while I was in treatment.
After I was diagnosed that summer, I began to think about how I could give back to the doctors and the people that were helping me. I wanted to get involved with my community when I had cancer because I didn’t want to keep it a secret like other people have. I just wanted it to be known that I had cancer. I really enjoyed the support that the community gave back to me while I was sick and afterwards. My mom’s friend came up with an idea of beginning a business, and there was another friend in the community who’s a designer. So I began to design headbands and key chains. It was originally just going to be like a community bake sale, just for $200, but I really enjoyed it, so we began to make it bigger. We got a Web site and raised a lot of money. I think we’ve raised about $250,000 dollars by now. Their time and expertise helped me get to where I am with my company. I really feel like I’m helping the people that will have cancer after me and possibly contribute to finding a cure for pediatric cancers and all cancers.
We give the money specifically to researchers to help in laboratories. We are funding the solid tumor lab at Columbia Presbyterian right now. We’ve given them $50,000 dollars so far. We will hopefully contribute to other doctors that are going to help research osteosarcoma and other children’s cancers.
I’m trying to start a program where we will involve other kids in this project. We have had one kid involved so far. Her name is Dana, and we did “Taybandz by Dana.” She made her own line of Taybandz and sold them in her community and school. So far, that’s gone really well, and we like to help other kids.
I have like a lot of friends in treatment, and they helped me through because they were going through what I was going through. They never really thought that anyone understood what I was going through except for them because they were going through the same thing. So in both hospitals, I found a lot of friends of all ages that I was really close to. It was really fun for me. I haven’t gone to camp, but a lot of my friends from the hospital have gone to camp. They say they really enjoy it because they are finally on their own without their parents, but they’re still able to be taken care of by nurses and doctors.
LIVESTRONG™ means fighting the cancer and trying to keep my spirits up, and trying to live my life as it was before I got cancer.
My name is Taylor Matthews. I’m 13 years old, and I’m an osteosarcoma survivor.