Type of Sarcoma: Follicular Dendritic Cell Sarcoma
Date of Diagnosis: January 2015
When I was 18, my left foot started hurting. It was intense, but at first, the pain would come and go. Over time, the pain became constant and unbearable. My feet were hypersensitive – when they were touched, I would scream. I had footdrop, so my left foot looked like a ballerina’s. My left foot would also go sideways, and I would have to drag it a lot. After work, I would often crawl to the bathroom because I could not walk.
I went to many foot doctors, sports medicine doctors, and orthopedic surgeons, but they all misdiagnosed me. Nothing they offered helped. My primary doctor told me it was gout, without a blood test, which with a blood test was proved false. I was told it was bunions or because I had flat feet, and even that it was a tarsal coalition. After years of this, I felt like this was just my life. It kept getting worse, no one was able to help me.
Also, I was experiencing an unrelated female health problem that started around that time. I was too embarrassed to go to the doctor for the female health problem. However, at 32, I was so weak I couldn’t brush my hair. In September of 2014, I decided to go to the doctor. After many tests, they found a large tumor in my lower left abdomen. It was sitting on and crushing my foot and leg nerves.
I had an inclusive biopsy in November of 2014, and pathology wanted the tumor out asap. My surgeon had never done this very complicated surgery. I was told I could end up paralyzed or lose vital organs. On December 26, 2014, I had a nearly six hour surgery to remove the tumor. I honestly thought it would be my last Christmas. I was told if I did not have the surgery, I would die. At least with the surgery, I had a chance at living. So, I put my trust in God. The surgery was successful, and they only had to take the tumor and the fat around it where it had spread. My feet and leg nerves were wrapped around the tumor, which explained the foot pain.
I was diagnosed with follicular dendritic cell sarcoma. When they told me what it was, I felt like a superwoman. That isn’t a typical response when being told you have cancer. However, the 14 years I had it, I went to work every day and was one of the best employees. I had responsibilities and a family to take care of, so I just kept pushing myself somehow. I was pale and tired, but I worked the midnight shift, so I thought it was just from that. I don’t know how I did it but I’m proud of myself.
Today I am blessed to be seven years NED. I deal with constant pain and mobility issues with my legs, feet, back, and pelvis due to having the tumor for so long. Some days are really challenging, but I always try to find a reason to smile.
I love to go to the zoo and take photos. It is my happy place. Penguins are my favorite animal. I often tease that we walk the same way. The number one lesson I learned is if something is wrong with your body and the doctors are not finding answers, demand a full body scan. It could save your life. Never give up till you find answers.