Ewing’s Sarcoma is the second most common type of bone cancer and it’s a beast. It’s high grade and highly aggressive.
Upon diagnosis, even if only one tumor shows up (localized), Ewing’s is considered to be micro-metastatic. This means there are metastasis or tiny tumors that are too small to be detected by any kind of modern machines in other areas of the body.
Ewing’s is a monster in every sense of the word. Even with the best treatments and/or surgeries by the best doctors, death is always lurking. Sometimes, this cancer invades the body quickly and the treatments are unable to slow the rapid progression. Other times, the cancer lingers within the body for a couple of months or years, undetected, and then returns, mutated and with vengeance. Some patients will re-occur three or four times before finally succumbing. Others die as a consequence of the toxic treatments, not the disease. This cancer can eat into bones, eat out of the bones, may attach itself to the heart, the spine, enter the brain, and it usually smothers the lungs. Anyway you look at it, it’s an awful way to die.
The initial chemical treatment (chemotherapy) for Ewing’s Sarcoma is far from the targeted “new wave” type of therapies that our foundation funds today. This “archaic” treatment is the polar opposite of the advanced targeted therapies that we hear about on shows like “60 Minutes” and TED talks.
Ewing’s treatment has been the same for nearly 25 years when researchers were able to correctly dose the toxic chemotherapy agents. The drugs used today range from 30 to 53 years old. The only choice I really had, after visiting several doctors, was to figure out if I wanted the chemo every two or every three weeks. In a recent study, the three- week treatment yielded, on average, a 5 year survival of 68%. Two weeks was 73%.
I chose the two-week protocol and was lucky to survive it. I was fortunate that my body was able to handle it.
According to a nurse at the Cleveland Clinic, the initial chemo treatment for Ewing’s is “extreme”. An aggressive cancer needs an aggressive treatment. Ewing’s treatment is a flamethrower approach, a slash and burn technique. Internal napalm. It kills everything inside one’s body in the hopes that the cancer gets wiped out too. Sometimes it works.
The eight months of treatment that followed my Ewing’s diagnosis were lost time. My first chemo took place the 15th of November 2012 and the last (God willing) was on the 9th of June 2013. Radiation started in early June of 2013 and ended the second week of July that year. In those 235 days, 42 were spent receiving chemotherapy and 25 receiving radiation. I spent about 100 nights in the hospital. Only thirty- five were due to chemotherapy infusions, the rest were due to bouts of C-diff, influenza, pneumonia, two separate cases of deep vein thrombosis, a limb sparing surgery and constant neutropenia. Neutropenia means you have no white blood cells and thus a compromised immune system. So, those infections were usually occurring with no immune system in place.
During this time I rarely saw my family. My wife, an elementary school teacher, and my children (2 and 7 at the time) were bringing home too many viruses and bacterial infections for my compromised immune system to handle. No amount of disinfectant wipes or house cleaning agents were going to be able to protect me against this threat. Paula decided to move into Alex’s room because she was always afraid (she teaches about 200 coughing and sneezing elementary students on a daily bases) and Alex and Sofi couldn’t understand why I couldn’t hug them, kiss them, or wrestle with them like before, even if I had had the strength and or the energy to do so, which I clearly didn’t.
Paula and I treated this time as another military deployment. We did everything in our power to stick to the two-week protocol. Everything else was secondary. Not everyone has that flexibility. We were very fortunate.
I moved out of my home and into my parent’s lower level where I could get sick, recover, and be alone. This seemed the best way to ensure that no outside illnesses would compromise my ability to receive the next chemo treatment on time.
My parents visited me in their own protective gear. With a lot of luck (and a lot of pain), I was blessed to be able to get my counts up high enough to receive the next treatment on time, but at the end we were really cutting it close.
Some of the local doctors in Asheville suggested I needed to start spacing out my treatments. I was determined to meet my two-week intervals on time and both Dr. Budd (my head oncologist from the Cleveland Clinic) and Dr. Chay (my local oncologist in Asheville) poured it on and took me to the edge.
By the end of treatment I was a physical shell. My eyes drooped into my skull. I looked like someone who was on his way out. I was emotionally, physically, mentally, and psychologically spent.