I was diagnosed with Rhabdomyosarcoma – a very rare skeletal muscle cancer – on December 12, 1990 at the age of 16. Since this was such a rare diagnosis (only six cases per year were in the U.S. and they were between the ages of 2-6) doctors only gave me six months to live. My doctors at Sloan Kettering put me on a very aggressive protocol which featured mega doses of chemo and radiation designed to destroy my bone marrow – something I would be given back after my final treatment with a bone marrow transplant (I was the second child to have a bone marrow transplant under this protocol). Keep in mind, this protocol was designed to intentionally destroy my body, my cells, tissues, and organs. This would essentially push the reset button and rid my body of cancer.
The very aggressive, highly controversial and risky protocol could save my life, but would also come with many potential side-effects. The massive radiation, extreme chemo, and bone marrow transplant helped me to survive, but bought me to the brink of death many times.
Thanks to many prayers, my strong faith, and doctors that didn’t give up on me, I survived a bone marrow transplant that caused the following health problems:
1. My bladder exploded – leading to 11 surgeries in a five-week span, all with zero blood counts, including no platelets. I would have such massive spasms that they had to physically tie me down to the hospital bed from the immense pain.
2. Massive bleeding as a result of my hemorrhaging bladder that resulted in as many as three daily platelet infusions. Many times, my mom was seen pounding on the nurses station door, begging for platelets.
3. A collapsed lung and borderline pneumonia as a result of being stuck without motion in bed for many months.
4. Massive sores up and down my esophagus that resulted in not being able to speak or swallow for three weeks.
5. Risky surgery on an infected broviac, administered while I was awake. Thank God my mom insisted the broviac was replaced, because anything else put through a lumen would have instantly killed.
6. After three weeks of my counts not moving, doctors told my parents I wasn’t going to live through the weekend. Amazingly, the next day my counts rose just slightly, which led to another rise, etc., etc. From there, I started a very slow road to recovery, which left me having to learn how to walk again due to the fact that my muscles had atrophied.
One of the regrets I had during that time was not recording my daily thoughts. There were many trying times and situations that tested my strength, resolve, and my faith. Finally, after four months of nearly impossible setbacks and recoveries, I was discharged from the hospital. However, the side effects of the bladder damage lasted another 4-5 months, leading to hospital stays, operations, and severe pain.
I recovered enough to be able to finish high school and a few years of college. I entered the workforce as a researcher at ESPN in 1999. However, the radiation had caused severe damage to my intestines, resulting in IBS, colitis, and being diagnosed with Crohn’s disease. The damage from Crohn’s disease also can show itself in intestinal blockages that can surface anytime, depending on reactions to diet. The American Cancer Society refers to these as “late effects” that survivors of childhood cancer can face due to receiving chemotherapy and radiation treatment during developmental years; effects that aren’t experienced by adults who receive the same treatment.
Another issue I developed was my legs and feet starting to swell. I learned this was a result of having my lymph nodes removed when I had cancer. I was diagnosed with Lymphedema in 2005 after missing work for many days due to fevers I would get from my lymphatic system being blocked. The Lymphedema in my legs was really hard to deal with, because of the intense pain and swelling. Finally, in 2008, I had to retire from ESPN when I kept missing work, due to the onset of Hemochromatosis.
I have been on disability since 2009 and with the mounting medical bills it makes in almost impossible to live and maintain a normal life.
Now, faced with an uncertain future I am now unable to work, while at the same time face mounting financial bills due to treating my current diseases, as well as finding other therapies that can start to heal the damage that has been done to my tissues and organs. All of this has me feeling a bit hopeless because I often worry about the overbearing financial concerns that were a direct result of the side effects of surviving cancer.
However, there is always hope, and people have been so incredibly generous and supportive to help me in my battle. It is my desire to continue to take the fight to everyone that wants to help end this disease and the disgusting side effects. There needs to be better options for cancer patients than to give up part of their life and create debilitating long term side effects that might extend their life, but create more problems.
Please give to my KNOCKOUTCANCER Cause and help me fight for others that need hope that tomorrow isn't just a day that will get worse, but that will provide a way to deal a knockout blow to the side effects of treatment.