I found out I had cancer when a sports orthopaedic surgeon removed what was believed to be a hematoma after I tore my medial collateral ligament (MCL) while playing in an ice hockey tournament. After a year of rehabilitation, the bump never went away. My doctor said I'd be fine and up and walking in four days and it was no big deal. I wound up not being able to walk for 12 weeks because the surgery was much more invasive and large-scale than I'd imagined.
On July 13, 2006, (Friday the 13th) I went in for my routine follow-up where they were going to pull the staples out of my leg. After the standard pathological testing, I got my diagnosis. I had a rare and little-known form of cancer - stage 3 soft tissue sarcoma. I was told to see Dr. David Monson, a surgical oncologist at Emory, that very day and that there was nothing else the private local-based orthopaedic surgeon could do for me other than give me a basic overview of information.
Naturally, I spent a few hours in absolute tears and made panicked phone calls to the 1-800-24-hour American Cancer Society hotline trying to understand what it was I'd been told, because it really didn't sink in.
When Dr. Monson gave me my diagnosis, his medical advice was to start with MRI and CT scans every three months along with a very strong regimen of chemotherapy and radiation. I then received a second opinion from a doctor who gave me the same diagnosis but recommended a completely different treatment protocol. The second opinion doctor told me that I didn't need to do anything and that they hated to put me through the toxicity of chemotherapy. But Emory said this cancer has a high degree of recurrence and if it did recur it could involve amputation and that I was young enough to tolerate the chemotherapy. I came back to Emory and the chips started falling into place.
Dr. Monson was my point man on the team. I received my treatments at Winship Cancer Institute of Emory University. I had six rounds of very high-dose, highly toxic advanced therapies and 37 high-dose pinpoint targeted radiation treatments that lasted about 45 seconds each. Radiation was a cakewalk compared to the chemotherapy.
At this point, I'm a pretty knowledgeable guy. They give you a laundry list of things that may occur and my wife and I laugh because I got my money's worth. I'd gotten every single one of the listed symptoms, from passing out in the lobby of the Glenn Building to having to be hospitalized and needing a blood transfusion. You name it, I got it.
Due to the rarity of my condition, there is no definitive empirical data or statistics to base my results on, so we don't know if the treatments worked. But it is our belief and hope that I'm clear of the cancer or in remission. I feel fantastic and so far all my scans are coming back clear.
I've helped to kick-start an Emory Sarcoma Support Group, which meets every third Wednesday at Emory's Midtown location and serve as a co-facilitator with an Emory social worker, Valerie Henderson, MSW. We average 23 attendees, all current survivors, patients, caregivers or anyone whose lives have been touched by sarcoma. We hold informative seminars led by the staff at Emory in such areas as pathology, food and nutrition, and the current status of research and treatment. I've also created the Southeast Sarcoma Foundation, and as of today, we've earned $7,500 for sarcoma research. We are truly excited to be meeting at Emory with the support of their doctors and nurses.
I wouldn't be here if it wasn't for Emory. We've had such a phenomenal experience and the program has come so far from the time I started there. I'm honored to help shape their future and proud of the significant changes that have been made. It's been a humbling experience to visit the nurses who took care of me on a daily basis and see them light up when I thank them every time I go back. I never would have imagined that the experience of interacting with those health care professionals from the doctors to the radiology techs would have been so profound for me.
If you're going to be treated somewhere for cancer, you are definitely in excellent hands with Emory. The experience at Emory is unlike anywhere else in the country.
Ned Crystal, 35, Smyrna, Georgia