A Similar Story
James “Rhio” O’Connor was diagnosed with an aggressive, fatal cancer called mesothelioma in October of 2001. His particular cancer develops in the pleural mesothelium, the lining around the lungs. Given his disease, he was given only a few months to live. O’Connor’s story, however, is not one of total despair. Rather than one of the misery of cancer and early death, his story is one of determination and hope, education and persistence, and the pursuit of life to its fullest. When surgery or chemotherapy was not an option, O’Connor took matters into his own hands, researching alternatives and changing his way of life in order to fight his cancer. Because of his efforts, he survived six years longer than the doctors predicted. His story is a familiar one to me, one that, in many respects, I have lived.
In January 2004, I was told that I was missing about 95% of one of my vertebrae, and there was evidence of disintegration in a second vertebra. I felt the world crashing down upon me with a single word from the doctor, the pity as the doctor explained that this could be anything from a mild, benign disease to a bone cancer. There was no way to get a direct diagnosis with a biopsy of the site. In the meantime, I was sent to The Children’s Hospital in Denver for testing. My family and I began preparing for the future, even though we had no idea of what that would entail. Since they required bone tissue to provide a diagnosis, I underwent my first spinal biopsy later that month. Over the next few days, I was tested for every imaginable disease, from cancer to rheumatoid arthritis. Nothing was found. The doctors were almost certain that the disease was Langerhans Cell Histiocytosis (LCH); it was the only possibility that fit. But, they felt they could not treat me without an official diagnosis. I was sent home by the doctors, just to wait. “There’s nothing we can do, so just watch it.”
Much like “Rhio” O’Connor, the decision that the doctors passed down was unacceptable to me and my parents. How was I supposed to just wait around while my spinal column continued to disintegrate? Returning home, we began to research LCH as the likely disease. Learning about the disease and researching possible options for treatment became an all-consuming aspect of our lives. Fortunately, a family friend had a daughter with the same disease. We learned from their experience who the best pediatric oncologists were in the local area and in the state. We heard firsthand what possibilities there were for treatment, how treatment affected her, and how to live with this disease. Most importantly, we found a world-renowned specialist in Langerhans Cell Histiocytosis at Texas Children’s Hospital in Houston. As my condition continued to deteriorate (I lost 50% of two more vertebrae in the ensuing year “waiting and watching”), we decided that this specialist was our best option. He agreed that just waiting and watching was not a wise course of action. Even though there was still no diagnosis, I was put on treatment for LCH.
A year and a half of chemo, four surgeries (including thoracic spinal fusion), innumerable tests later, I was declared in remission, with no evidence of disease process left. This defining experience was and still is monumental in my life. While the disease did not define me, it did change me. I discovered that I was strong, determined, and willing to fight for what I wanted out of life. I found that what other people want me to be or what society tells me to be has nothing to do with who I am. Most importantly, I learned that it is the people in your life who make you happy, not a good grade or a new pair of shoes, and that a ravaging disease cannot take away that happiness. I learned to love with a full heart, looking forward to each day for the smiles, hugs, and laughter it would bring – even through the challenges of treatment. I learned to trust God for strength to persevere through difficulties when a happy outcome is far from guaranteed.
My prognosis was never terminal; what “Rhio” endured was far worse than what I ever had to go through. However, there is a common theme through both stories: you are the best judge of you. Even doctors cannot know everything, and ultimately, it is up to you to know what is best for you. Vigorous interest and personal research are invaluable, finding out what might work for you and being able to have intelligent discussions about the disease with the doctors rather than blindly trusting any decision they make. Furthermore, you have to find the people that will support you. If one doctor tells you “no”, you have to keep searching for the “yes”. Find the people that will help you live, rather than focusing on the presumably inevitable death. These are very important steps, whether you are facing mesothelioma, Langerhans Cell Histiocytosis, or any other disease.
O’Connor’s story is all the more inspiring to me because of what I have been through. His story provides hope, beyond what mine can. There is a reason to fight, a reason to live, even when you are told the worst of news. Pure determination can be as much of a medicine as chemotherapy. Finally, as both O’Connor and I found, education is the key to opening a world of possibilities, some of which might even save your life.