TELL YOUR STORY
We invite you to tell us your
sarcoma story, as a patient,
survivor, or as someone who has lost
a loved one to sarcoma.
Type of Sarcoma: Ewing Sarcoma
I want to share with you what happened to my face. In 1993 a lump grew on my left mandible. I went to the Twin Cities to have it removed - it was a cancerous tumor and it destroyed most of my mandible. I had to have a tracheotomy because my airway was closing due to the long surgery. After 21 days in the hospital, I came back home and had nine months of chemotherapy and 25 radiation treatments in Grand Forks, ND.
The one medication that I alternated monthly made me so week and sick I would just sleep all day. I had a 60 percent chance at surviving this. When I was in the Twin Cities they put a steel plate in my face, but it was infected the whole time I was on chemo. It was removed after my treatments. I’ve had over 25 surgeries to improve my appearance, in spite of there not being much hope to repair my jaw since I had radiation to that area.
After an unsuccessful 2007 repair surgery with many complications, I flew to Detroit in April of 2008 to see Dr. Ian Jackson, a pioneer in craniofacial cancer surgery. I had two options: to do another fibula free flap, or to take some of my hip bone to fill out my chin and fill the rest of my face in with tissue. They are wonderful people there. I never flew before so I was kind of nervous, especially going alone, but I enjoyed it.
The fall of 2011, I read the story about the woman whose face was torn apart by her friend’s chimpanzee, so I looked up Dr. Bohdan Pomahac and his team at Brigham and Woman’s Hospital in Boston. I emailed his assistant and a week later, to my surprise, he called me. We talked for a while, and he told me that they would pay for me to fly there.
I met his wonderful team and did all the x-rays etc. I decided to go for it. I had my first surgery in March, 2012. They opened up the left side of my face and cleaned out all the scar tissue, then opened up my abdomen, removed muscle, and placed it where my jaw bone is missing to form a base. They removed half of my abdomen fat and skin and placed it over the muscle and sutured it in place. Finally, they connected the blood supply.
Everything worked great on my face, but I got a huge hematoma in my abdomen and a large blood clot near my lung. I needed five units of blood and was put on blood thinner to make sure I didn’t get another clot. I was so weak before the blood transfusion, I passed out setting as the nurse was getting me up to go to the bathroom. My wife, Angela quickly pushed me back on the bed so I did not fall and hurt my face, she thought I was dead. The nurse yelled code blue. I woke up with many doctors and nurses around me and saw Angela crying. I told her that I didn’t want her to see me this way.
I spent a month in Boston. After everything healed well, I returned for a minor surgery in June. They liposuctioned my face to downsize it and contour it. I went back for surgeries in August and November to further contour my face. They even made me an earlobe which I hadn’t had since 1993. I went back for a couple more touchups – finishing in January, 2014. They are a great medical team.
I just feel better inside letting you know what all happened. I have tried so hard to look better, not just for myself, but for my wife and kids, especially. They miss out on a lot of things because I am not comfortable in certain situations.