I was very active, a basketball player since age five. Oftentimes I would ask to play the entire game even when I was tired. My only passion was to play basketball, and I was known as "lil shaq" because I wasn't a little guy; I was pretty big for my age. They didn't realize how good I could play until this big kid went into action.
I started to feel pain in my left leg, and at first my mom thought it was growing pains. Suddenly the pain became a limp and I told my mom. She didn't believe me when I said I felt a tumor; I'm not sure how I could tell that but I did. A few weeks later the pain got worse and I asked her to check. She felt this lump on my femur, and off we went to the emergency room. It was 6am, and by 9am the counselors and the oncologist were walking into my room with their chairs and serious looks in their eyes. My mom was stunned, quiet and unable to process the words: "Your son has cancer." I am not sure how they were able to tell so quickly from just an MRI, but I remember feeling overwhelmed and not understanding what they were saying. I remember the feeling of confusion and the "why me" thoughts. I know that most of those first few days were difficult. The biopsy confirmed that it was osteosarcoma, and the next day I was admitted. I started chemo on the day of my 13th birthday. My parents tried to change the day, but the oncologist said another day would be another day of allowing it to grow or spread. So, we began my journey.
My treatment started in December of 2008, and I finished my MAP protocol in August of 2009. So I had nine months of treatment in total. The side effects were awful; I was full of sores and unable to keep anything down. The sleepless nights became unbearable...I think the worst part was the number of days it took to give me the chemo and all of the days I had to stay in that bed.
I coped with laughter; I watched comedy, specifically George Lopez. The minute I walked in my hospital room, I had the movies selected. I didn't sleep if the TV was off - I think so that I could not think about what was going on inside of me. I lost all of my middle school friends except for one; to this day I don't have any of them. It was rough, as a young boy, to keep friends. Girls tends to be more emotionally invested in friendships than boys. I don't know how I kept going. I think it was more of "can't do anything but keep going." Some say it's strength and others a sign of a warrior, but for me, I was just a kid wanting to live.
I think this is the worse part of it all; the recovery is so difficult. You think life can start over, that things can have some sense of "normal," but it wasn't like that. My physical therapy lasted three years; I am still unable to walk without crutches. The crutches are a daily reminder of my disease and my battle with it. I look around at some of the other cancer survivors and I don't see any physical damage, and I wonder if their lives are different. I know we are all linked in this journey, but once you add that physical aspect, then you know that the world is aware that you had "something."
I am now facing amputation. In fact, it was recommended that I do a hip-disarticulation. I am not sure if we will have that done or not, as my mom is looking into a different type of surgery that will give me something for a prosthetic leg that will give me more function.
I have ringing in my ear that affects me daily. I have gotten used to it; it's when it gets really high that it bothers me. I also have heart issues; the chemo left me with signs of heart failure and an irregular heartbeat that we watch. I am currently on heart medicine to prevent it from getting worse. It's like the recovery isn't really recovery but a means to live life in a different way, constantly battling with what is left behind. I had a small nodule appear in my left lung 2 years after my last treatment that disappeared after a few months, so I have not had a recurrence. But mentally I have had a difficult time with the effects that are left behind.
I am now 16, and I don't feel like I have had the chance to enjoy my life as a teen. I struggle with being too quiet and or wanting to stay away from making friends. I am not sure how much is normal and how much is different...all I know is this is what I am and this is what I will embrace, I am still alive and I am going to keep living each day with a smile on my face.
I am now a junior in high school, and I am starting to view things around me differently. I want to be more active with school, making friends, but I think I need to have this surgery done. The crutches tend to remind me that I am different - I want to get rid of them and have a chance at making my life mine again. I feel like I can't even get my own tray of food, it's frustrating at times. However, I have met great people and had the chance to do things I wouldn't do if I had not had this journey. There is a purpose for all of this - I write songs and or poems about how I feel, and from what I can see they are really good at describing how I feel deep inside. The sarcoma experience is different for everyone; for me it makes me want to do more. I want to write, sing, or do something that will make me stand out, because I feel that my journey can affect or change someone's direction. At my age, so many teens struggle with so much; maybe, just maybe I can help someone with their struggles.
Thoughts and Hints for New Patients
First, find the right medicine, both preventive and for use during chemo. I think the nausea and the sores were the worst. I think there are more things I could have taken to make those times easier. Find other people your age that can relate and help you. I had nobody to guide me; it was tough to just take it without anyone saying "I've been there." If a friend was diagnosed, I would say the truth: You are about to endure something difficult, but know that many of us have done it and made it through. Time passes, do what you need, stay strong and see the end of the pain in sight.
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Copyright © October 2012 Liddy Shriver Sarcoma Initiative.