Friday, August 6, 2010
As told to Jamie Reno in his amazing book, Hope begins in the Dark. You can find the book at www.hopebeginsinthedark.com
Wow, what can I say? A major part of my life is the fact that I am a 13 year cancer survivor. I was diagnosed when I was 18 years old and a freshman at the University of Richmond in Virginia. I had an emergency appen..omy and the doctor’s found a golf ball sized tumor attached to my appendix. After the biopsy, the doctors determined it was Burkitt’s Non-Hodgkins Lymphoma. Burkitt’s is a very rare form of lymphoma making up roughly 1-2% of all lymphomas and it also happens to be one of the fastest growing lymphomas. Had the doctors not found the tumor, they indicated I would have been dead within a week. That small golf ball sized tumor would have taken over all my vital organs in a short seven days. My world came crashing down. The doctor’s gave me a choice. Start treatment in Richmond, VA or travel north to Bethesda, MD and take part in a clinical trial at the national institutes of health. NIH is the best of the best.
The next day, we headed north to Maryland. So, for the next 2 and a half months, I lived in a hospital bed, leaving the hospital maybe 4 times. My protocol at the time was one of THE most aggressive treatments available. The doc's indicated that in a short 2 and a half months, they would give me the same amount of chemo that most patients receive over a 2 year period. I had 24 hour drips of Methotrexate, followed by Vincristine, etc. In that time frame, I had 27 X Rays, 7 Cat Scans, 6 spinal taps (one that took two hours), bone marrow taken from my backside, a Hickman catheter inserted into my chest, platelet transfusions, EKGs, lost all of my hair, and lost close to 50 lbs. .It got so bad that I had to be fed through my Hickman catheter and I had to take a wheelchair wherever I went in the hospital. I am so lucky and fortunate to have the most amazing family and friends. I sometimes think a cancer diagnosis is harder on family than the person actually going through the treatment. It has to be tough having no control and watching your son, brother, and friend battling a deadly disease like cancer. My parents, sisters, brother-in-law, and friends were absolutely amazing throughout all of my treatment. My dad would drive up from Richmond and stay with me during the week, heading home on Thursday or Friday. Mom would take his place from Friday to Monday. I could have opened a Hallmark store with all of the cards and balloons that I received. I had friends make picture collages and I even had a group of friends drive up from Richmond while making a video for me letting me know they were thinking about me all the time.
It was not all cheery all the time, reality sets in just when you think you are cruising along. My 3rd roommate actually had the same kind of cancer I had so we bonded immediately. Unfortunately, there is a time when you are fighting cancer that you become neutropenic. This means you have no white blood cells to fight off infection. He started to get an infection around the same time the doctors noticed some white spots on my chest in an X-ray. White spots on an X-ray are not good. They were unsure what it was, so they did a procedure where they stuck a camera up my nose down to my chest to see what it was. Turns out I had pneumonia. The doctors indicated they couldn’t give me antibiotics since I had a zero white blood cell count, so they would have to wait and see. While I was in the “wait and see” period, my roommate passed away from his infection, they did an emergency surgery, but weren’t able to save him. I have never been more scared in my life, but I never, ever gave up hope.
Needless to say I am very lucky to be here. I never really spoke about my cancer since it was so easy to put it on the backburner and return to normal life as a college freshman. Unfortunately, it took my aunt (Aunt Joan) being diagnosed with cancer along with a good friend from high school (Ryan Gascoyne). Sadly, Ryan passed away and it was at this time, that I woke up and decided I had a responsibility as a survivor. In June of 2002, I did a century bike ride (100 miles in one day) around Lake Tahoe for the Leukemia and Lymphoma Society's Team in Training. I did it in memory of Ryan and in honor of my Aunt. This was my first exposure to the non-profit cancer research world. When I came down that final hill in Tahoe, I had to pull over to the side of the road because I was overcome with emotion. I was crying like a little baby. They were both tears of joy and sorrow. I was happy that I had overcome so much and beat cancer, but sad that my aunt was going through treatment and that my friend lost his fight. That ride changed my life forever. It opened my eyes to so many things about survivorship and dealing with my history, an epiphany of sorts. I also met my wife on that ride, she still works for the Leukemia and Lymphoma Society. Talk about the best bike ride ever! Sadly, My aunt died months after our wedding, but it was bittersweet. We knew that our wedding would be her last hoorah, so we made the most of it. I believe in my heart that she kept fighting so she could make it to our wedding.
I have since become actively involved not only with the Leukemia and Lymphoma Society, but the Lance Armstrong Foundation. In May of 2006, I was fortunate enough to have been chosen by the Lance Armstrong Foundation to attend their LiveSTRONG day in Washington, D.C. Our goal was to ask our representatives and senators to consider an increase in cancer research funding, since the president was and did cut funding for the first time in 36 years. . I met with Sen. Barack Obama’s and Sen. Dick Durbin's Health Legislative assistants and discussed the ramifications of cutting funding. It was an amazing experience that I will never forget.
I think cancer is the best thing that has ever happened to me. I learned to take nothing for granted and as my friends, family, and wife will say, I RARELY get stressed out. I don’t really see a point in it. I guess cancer does that to you. Along the way, I have met some of the most amazing people. One of my inspirations happens to be a very close friend of mine, Sean Swarner. I have been working with his non-profit, the CancerClimber Association for the last year and a half. Our mission is for patients and survivors to inspire one another by climbing their own “Everests” by giving adventure support grants while helping them achieve things they never thought possible. I am a firm believer that everything happens for a reason. Had I not been diagnosed with cancer, I would not be the man I am today. I know it sounds trite, but for me, it’s the truth. I am so obsessed with making the most of my life that I recently compiled a list of things I want to accomplish before I die. I am up to over 100 things that I would like to accomplish before I die. My outlook on life has completely changed and cancer is the reason I live such a rich, fulfilling life. I have so much to live for, so many things left undone, so many goals and dreams that I would fight it until there was no more fight left in my body. Plus, I love how life is full of surprises, good and bad, because that is what makes life so worth living. The unknown. I don't want to be "stuck" in life, I want surprises! Life is a precious thing.... Be well, LiveSTRONG, and Keep Climbing!
Posted by Joe Schneider at 8:34 AM