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    Posted February 26, 2014 by
    anninahanlon
    Location
    California
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    Full Circle: Coping with the Aftermath of Cancer as a Teenager

     

    I am 17 years old.  I love to read.  I am a good student.  I seem relatively normal, but there is one very unusual wrinkle in the fabric of my life that has defined the person I am today.  In June 2009 when I was 12 years old, after months of inexplicable leg pain, I was diagnosed with osteosarcoma, a form of bone cancer.

    I was young, innocent and laughably clueless when it came to my diagnosis.  I had no idea that my life was about to change forever.  In fact, I don’t think it had even occurred to me that children could get cancer.  Ironically, childhood cancer is the number one cause of death by disease for kids, and yet it is still considered a “rare disease.”

    My treatment was, to put it honestly, a brutal trip through a fiery hell to death’s doorstep where I stayed for eight months before slowly returning to a kinder reality.  I was in and out of the hospital almost every week, and my days and nights blended into one long nightmare filled with endless discomfort, constant nausea, restless sleep, significant loss of independence and mediocre television. 

    Part way though my 18 rounds of chemo, in September 2009, I had limb salvage surgery on my right leg to replace part of my femur and knee joint with a titanium prothesis.  The recovery from this surgery was another battle in itself.  After I graduated from the hazy world of painkillers, I had an uphill battle of relearning to bend my leg, and then relearning to walk.

    Sometime during my eight months of treatment I came to the decision that I couldn’t be enduring “hell” without a purpose.  I began thinking that it was meant to be that when released from my treatment, I would somehow change the world of childhood cancer for the better.  Frustrated with the limits and toxicity of the available treatments and disillusioned by the lack of funds for childhood cancer research, I imagined spreading awareness, raising money for research and eventually maybe even conducting research of my own.

    I was discharged from the hospital for the last time in March 2010, bald but ready to reenter the world and make an impact.  I returned to school for the last couple of months of seventh grade and was happy to be back to a normal routine.

    Eighth grade started and I was still very optimistic about my role in raising awareness and funds for childhood cancer.  Quite quickly though, I began to feel like I was pegged as the “cancer kid.”  It wasn’t that anyone called me that per se, but with chic short hair and a visible limp, mentally I had singled myself out, and the desire to conform punctured my grandiose ideas of making a difference.

    Suddenly I was doing everything I could to make sure I wasn’t only known as the cancer kid.  I ran for student body president of my junior high and won, I hyper-focused on having perfect grades and I tried to find a new niche, with my “less than perfect” leg.  Deep down I didn’t want to completely disown my cancer ordeal, I just didn’t want it advertised on a billboard with big letters and flashing lights. Despite my reluctance to share my story, my mom and I incorporated a nonprofit, Cure Me Too Childhood Cancer Foundation, to raise awareness and money for research for some of the most difficult to treat childhood cancers, and I designed and published the original website.

    High school represented a shining new opportunity to redefine myself. In a school of over two thousand people, only a fraction of them would have previously known me and I could simply pretend that I never had cancer.  Of course this was naive and wistful thinking because, not only did I still have a limp, but I had a 12 inch scar on my leg.  I joined several clubs at school, including the swing dance club. I also created a short video that won $25,000 from Mercedes-Benz for Camp Okizu (a camp for kids who have had cancer and their families), but I made sure it wasn’t advertised.  I was still optimistic that I could leave my past behind.

    Then a bombshell shattered my carefully constructed new life:  x-rays showed that the titanium rod in my leg was no longer attached to my femur —which explained why my leg had not been responding to physical therapy for many months.  I was condemned to crutches for the next three months until surgery, and an additional three months after surgery, to allow time for my femur to firmly attach to the titanium rod.

    I went into a state of full mourning.  In an attempt to reduce the damage (or rather, perceived damage) to my image, I backed out of any social commitments and all but retreated into a hermit shell.  Unfortunately, I still had to attend school and I was bombarded with questions about why I was on crutches.  At first I politely responded to every inquiry by simply saying that I had a titanium rod in my leg that broke.  Then, inevitably, would come the question, “Why do you have a titanium rod in your leg?”  To this I would answer that I had bone cancer when I was 12 but I was in remission.

    After getting a remarkable number of blank stares and well-meaning but misguided responses, I began to routinely answer with “long story.”  Then I would typically hobble away before anyone had a chance to inquire further.  My parents thought this response was shutting people out, and in retrospect, I’m sure they were right.

    After surgery, I missed five weeks of school, and felt more alone than ever when I returned.  Ironically, at the end of my ninth grade year, at a rally in front of 2,000+ students, I received the Make a Difference award for my $25,000 win for Camp Okizu, an honor I would have coveted while I was in treatment.  My cover as a “non-cancer kid” was officially blown.

    Tenth grade began and I was immediately immersed in schoolwork.  I did make an attempt to integrate myself socially, but my activities were limited because I was still in physical therapy.  Finally, at some point near the end of my sophomore year, I had a revelation:  The times when I was truly passionate about what I was doing were when I was working on childhood cancer-related projects.  I admit I may have been repressing my interest in supporting childhood cancer in an attempt to salvage my own self-image, but suddenly everything became clear.

    As summer started, I fully immersed myself in cancer-related ventures.  I began volunteering for Wellness Within, a mind-body wellness center for cancer patients and their families.  I devoted countless hours to finishing the design of a game for the iPhone, Zarno, to raise money for our nonprofit.  I also volunteered for a week washing dishes at Camp Okizu, as well as attended camp there for my fourth year.  When 11th grade began, I even started my own club at school, the Gold Ribbon Childhood Cancer Club, to raise money and awareness for childhood cancer.

    My passion to raise much needed funds for childhood cancer is not just inspired by my story.  It is inspired by the stories of the remarkable friends I have made who are fighting this horrible disease.  It is inspired by those who are now angels and those who are scarred survivors.  Tragically, so many kids and teens have suffered only because childhood cancer research is not well-funded.

    No matter how hard I try, I will never be able to pretend that I didn’t have cancer.  Cancer has shaped who I am today and I no longer regret that.  I focus on the people I have met and the difference I am making and will continue to make in the future.  My aspirations of impactful and influential action from my days of fighting have become my reality.  I have officially come full circle.

     

    Annina Hanlon is a junior at Granite Bay High School where she balances a rigorous academic schedule with her involvement in several clubs, including being the President of the Gold Ribbon Childhood Cancer Club. When she is not busy with school, she loves to play Scrabble, and is thrilled her leg finally works well enough to ballroom dance.  March of 2014 will mark four years since Annina finished her last chemo treatment.

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