Wednesday, April 8, 2009


So, this is kind of part two of my story with bits and pieces of part one. This was recently published in the new Chicken Soup for the Soul: Cancer Book, you can buy this amazing book full of great stories here

My world came crashing down when I was eighteen years old and a freshman at the University of Richmond in Virginia. I had an emergency appendectomy and the doctors found a golf ball-sized tumor attached to my appendix. After the biopsy, the doctors determined it was Burkitt?s non-Hodgkins lymphoma, a very rare but fast-growing cancer. They told me that the tumor could have killed me within a week. Ever since then, cancer has been a constant in my life. I am now a fourteen-year cancer survivor.

I was fortunate enough to take part in a clinical trial at the National Cancer Institute in Bethesda, MD. They are the best of the best. For two-and-a-half months, I basically lived in a hospital bed, receiving one of the most aggressive treatments available. In less than three months, my doctors gave me the same amount of chemo that most patients receive over nearly three years. I had twenty-four hour drips of Methotrexate, followed by Vincristine, among others. I had twenty-seven X-rays, seven CAT scans, six spinal taps (one that took two hours), bone marrow taken from my backside, a Hickman catheter inserted into my chest, platelet transfusions, and EKGs. I lost all of my hair and lost close to fifty pounds.

I had to be fed through a tube and took a wheelchair wherever I went. I started treatment so quickly I was unable to bank sperm and the doctors couldn't say whether I would ever get to be a father.

Nonetheless, I was so lucky to have a great support system. My parents, sisters, brother-in-law, and friends were absolutely amazing. 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. I could have opened a Hallmark store with all of the cards and balloons that I received.

It was not all cheery all the time, though, because reality sets in just when you think you are cruising along. My third roommate had the same type of cancer as me and we bonded immediately. Unfortunately, there is a time when you are fighting cancer that you become neutropenic, i.e., 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. White spots on an X-ray are not good. 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. Meanwhile, my roommate passed away from his infection despite emergency surgery. I have never been more scared in my life, but I never, ever gave up hope.

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 Joan being diagnosed with cancer, along with a good friend from high school, Ryan, who passed away, to wake me up to my own responsibility as a survivor.

In June 2002, I did a one-hundred-mile bike ride 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 had lost his fight.

That ride changed my life forever. It opened my eyes to so many things about survivorship. I also met my future wife that day while she was working at the Leukemia and Lymphoma Society. Our wedding was bittersweet because we knew that it marked the last hurrah for my aunt, who died a few months later.

Needless to say, I am very lucky to be here. I have become actively involved, not only with the Leukemia and Lymphoma Society, but with the Lance Armstrong Foundation. In May 2006 and the summer of 2008, I was fortunate to travel to Washington, D.C., with the Lance Armstrong Foundation. Our goal was to secure an increase in cancer research funding. I met with then-Senator Barack Obama's and Senator Dick Durbin's legislative assistants and discussed the ramifications of cutting funding. I also went to the inaugural LIVESTRONG Summit, attended the Presidential Forum on Cancer and have been actively involved as the co-founder of the Chicago LIVESTRONG Army.

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, mountain climber Sean Swarner. I have been working with his non-profit, the CancerClimber Association for the last three years. Our mission is for patients and survivors to inspire one another by climbing their own “Everests” by giving adventure support grants to help 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: brother, son, friend, husband, and most recently, father. My wife and I call Riley our miracle baby because I really wasn't sure if we would be able to have a baby. Riley brings a joy to my life that I never thought possible.

Life after cancer has been amazing. It's the best thing that ever happened to me. When I say this, I receive more than my fair share of odd looks, but I truly mean it. I have 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. 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 surprises, good and bad, because that is what makes life so worth living.

Be well. LIVESTRONG. And Keep Climbing!

~Joe Schneider

1 comment:

  1. Fantastic, thanks for sharing...very inspirational