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. In early July I was given my last massive dose of chemotherapy that would leave me unable to produce bone marrow again. Due to the dangerous risk of infection due to the immune system being repressed, I was put in isolation until my bone marrow starting to produce again. This process normally takes around 3-4 weeks.
Only July 15th I was given my bone marrow back that was taken from me in January. I had no idea what horrors lied ahead as I waited for my bone marrow to kick in again. The following are some of the issues that led to last rites being said over me on multiple occasions.
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 finally Crohn’s disease. The damage from Crohn’s also can show itself in intestinal blockages that can surface anytime, depending on reactions to diet. In addition to the daily uncertainty and immense pain that Crohn’s flare-ups cause, I also started to notice moderate, then severe swelling in my right leg. Finally in 2003 the swelling - which at one time would recede - was persisting and often caused excruciating pain. The condition was caused from my lymph nodes being removed early in my cancer treatment and resulted in Lymphedema. This along with the side effects of chemotherapy and radiation were occurring in a high percentage of childhood survivors that were treated during their developmental years. The American Cancer Society refers to this as “late effects”.
Suffering from both diseases made working my job at ESPN almost impossible. Lymphedema was causing fevers from my lymphatic system being blocked. The fevers would cause something similar to cellulitis, resulting in severe pain from the swelling and exhaustion from the fevers. ESPN allowed me to work from home, which initially worked out well and I was promoted in 2006. However, the strain of working, even though greatly reduced from being at home, was now starting to affect my work. After my review in 2007 showed I took a step back despite my best efforts, I knew I could no longer continue working. I went on disability soon after and could no longer provide for myself and family.
DESPITE BEATING CANCER, MANY ARE NOW FACED WITH A FUTURE WHERE WE CAN’T SUPPORT OURSELVES.
Initially I became very depressed and started to give up thinking I was a burden and humiliated that I my then wife Kelly now had the entire financial burden on her. While my marriage would eventually end in 2017, I was very fortunate to have a spouse that was able to provide for me and worked very hard going back and forth to Manhattan from Long Island everyday.
Many survivors who suffer long term side effects from treatment that prevents them from working live with the fear of being homeless and destitute after giving their life to this disease.
Survivors guilt is something that can be very real in facing what we face everyday. While I am blessed and thankful to my Lord and Savior Jesus Christ for everyday he gives me and the incredible miracles He has done in my life, I simple cannot consistently complete the daily tasks that are required to work everyday. Some days I go to the bathroom 25-30 times before noon, which leaves me exhausted and humiliated. Many days it takes every bit of strength I have to get up and walk without intense pain into the kitchen because of my leg swelling overnight.
WE WERE MADE WITH & FOR A PURPOSE - KNOW WHO MADE YOU
After a few years of feeling sorry for myself, I tried to use the talents I could use that God still has uniquely blessed me with to tell my story and help inspire others. It says in John 10:30 that God knows the “very hairs on our head are numbered”. King David, who the bible says in Acts is “a man after God’s own heart”, and who slew the mighty Goliath with a sling shot, when feeling hopeless cries out to God in Psalm 139, “For you created my inmost being;
you knit me together in my mother’s womb. praise you because I am fearfully and wonderfully made. Each one of us, no matter what our trials are and how little we think we offer, each are perfectly unique with specific talents that only we can give. There is only one Mark Kelly and only he can touch people with the gifts God blessed him with.
I AM NOT A VICTIM, I AM A SURVIVOR. FIGHT BACK!- NEVER QUIT CAUSE YOU NEVER KNOW HOW YOUR STORY CAN INSPIRE OTHERS
I never thought I would finish publishing my experiences suffering through cancer. I am able to share my love and knowledge or sports history with people when I speak for youth groups, churches and companies that hire me. Choose to fight back. Choose to overcome. Choose to allow God to bless others with your life and story.
If you wish to help me in my battle, please click on “My Scars Tell A Story” and you can donate to my KNOCKOUTCANCER cause and help me fight for myself while showing 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.