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    Posted May 13, 2014 by
    jeremypivor
    Location
    Bali, Indonesia
    Assignment
    Assignment
    This iReport is part of an assignment:
    The written word: Your personal essays

    10 Years Cancer Free: How a Brain Tumor Changed My Life

     
    As May is national brain tumor awareness month, I thought I should take the time to share my story and bring awareness to a form of cancer that gets little attention, but is the leading cause of cancer-related deaths in children under 10 and the second leading cause for those under 20. Every day nine children in the U.S. are diagnosed with a brain tumor. In November, 2004, I was one of those children. As I celebrate 10 years since my diagnosis, I hope my story can give strength to those being affected by a brain tumor and inspire others to support research that will one day find a cure.

    Staring back at myself in the mirror my mind was filled with emotions; fear, anger, sadness, hope. The next morning I would drive with my parents to Mass General Hospital for surgery to remove a brain tumor. I don’t really know what I believe in. I wouldn't call myself religious, but that night before my surgery I spoke, hoping someone or something was listening. I hoped to wake up the next day after my surgery, to have the strength to overcome this. I hoped I wouldn't be left paralyzed, and promised I would be a good son, brother, and help others around me if I made it through this experience. And I hoped that if something were to happen, that my family would have the strength to continue on. As a 12 year old boy the circumstance I was in had not really struck me until that night. Never before had thoughts like that filled my mind. As the boy standing in front of the mirror I would have never imagined the journey I was about to embark on and how this experience with cancer would change my life forever.

    Now a decade later, I sit writing this letter in the rainy rice paddies of Bali, Indonesia. Over the past 10 years I have been incredibly fortunate to travel the world and follow my passion for ocean conservation. From living on the coast of Madagascar, sailing a tall ship up the Atlantic Ocean, to living in Bali and travelling throughout Indonesia, these are just some of the many experiences I have had in an effort to live every moment to the fullest and give back to those around me.

    I feel this responsibility to give back because of the countless people who supported me and gave me the strength to win my battle with a brain tumor and the subsequent recovery. On February 16th, 2004, I laid down on the hospital gurney about to enter the operating room. It had been a whirlwind leading up to that day. After a seizure in school, doctors found a brain tumor that was later diagnosed as an oligodendroglioma, located on the part of the brain that controls the right side of my body and rarely ever found in children. While at first we decided to hold off on surgery due to the risky location, a few seizures later we ended up getting a second opinion. My parents and I were faced with a choice, to hold off on the surgery and risk the tumor continuing to grow and in the end likely becoming fatal, or go ahead with the surgery and risk my right side becoming paralyzed. While I was aware of what was going on and wanted the surgery, I don’t think I can ever imagine what my parents must have been going through, having to make this decision for their child who just a couple months back was happy and healthy playing with friends, and living a normal childhood.

    Following the surgery I had lost all movement on my right side. The doctors predicted I would be paralyzed for at least three months, but after four days and constantly trying to move my leg, it twitched. I then spent the next few months in the hospital working with numerous nurses and therapists to relearn what I had at once taken for granted, like learning how to walk or even holding a glass of water. It was not only my movement that was affected. My ability to process information like before had been significantly diminished, and while trying to stay caught up with school, I would often be too exhausted to continue. These were probably some of the hardest months of this long journey of recovery. I haven’t told anyone this before, but there were several moments while in the hospital that I wanted to give up. I would cry, wondering why me, why I had to go through this struggle. But it was my family, friends, doctors, nurses, and even complete strangers that gave me the strength to keep going. My mom and dad were always there by my side even while the responsibilities of work and bearing the financial burden of medical expenses would weigh on their shoulders. I loved when my brother and sister would come into the city to keep me company. My friends would ask to visit, but embarrassed by my condition, I pushed them away. This is one of my biggest regrets, and I hope they know the letters they sent me helped push me to keep going. My relatives and family friends were always there for me, but just as important, they were there for my parents and siblings who were going through a different yet equally difficult struggle.

    Over the following months and years I continued with my recovery. My family was there for me day in and day out. They made sure I always had the best care, the best support that I needed. I don’t think I will ever fully understand the hardship and sacrifices they made for me. But I hope they know how grateful I am for everything they did and continue to do to support me. I am incredibly lucky and fortunate to have them in my life.

    I still live with some lingering physical and learning disabilities from my brain tumor, but these side effects also remind me every day how lucky I am to have been given a second chance at life. My story is about more than just a personal struggle, it is about how a community of people came together to support me and give me this gift of life. Having reached my 10 year anniversary of being cancer free, the best way to celebrate is to express my gratitude to everyone who has been a part of this journey. I would not be here without them and I am forever grateful. I often wonder why I am so lucky to have this amazing support, and I recognize that I am incredibly privileged for the people and opportunities I have had in my life.

    It is incredibly important for me to not underestimate or let this privilege go to waste, but instead use what I have been given to make this world a better place. Cancer or not, I would regardless have this privilege of endless support, but it is my experience with cancer that has helped me understand that privilege. This is one of the greatest lessons I think I will ever learn in my life, and something that guides me throughout everything I do. It is not my experience with cancer that defines me, but how I continue forward with the lessons I learned from that experience.

    Sadly, my story is not unique. Today, nearly 700,000 people in the United States are living with a brain tumor. To honor national brain tumor awareness month, I will be participating for the 10th year in the National Brain Tumor Society’s Boston Brain Tumor Ride on May 18th. This annual event raises awareness and much needed funds to support research that will hopefully one day find a cure for brain tumors. For me, this bike ride has always been about gratitude and thanks. I am incredibly lucky with how my story has unfolded, but many are not as lucky. No one should have to go through having a brain tumor, and the only way to do that is by finding a cure.

    If you or a loved one is going through a similar experience as me, know that you are not alone. There is a community of people here to support you and fighting to find a cure. I don’t know what the future has in store for me, but it is that comfort of knowing I am not alone that keeps me going and riding for a cure every year.

    If you would like to become a part of this community and support the ride please follow this link: http://www.braintumorcommunity.org/site/TR/TeamraiserEvents/BostonBrainTumorRide?px=1085407&pg=personal&fr_id=2241

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