Heather’s Journey with Sarcoma
On March 7, 2017, as I was climbing into bed, I happened to look down and noticed that my right calf was unusually larger than my left. When I touched it, I felt an abnormal hardness where it was swollen. Concerned, I reached out to my close friend Dr. Mike Dockery, an orthopedic surgeon at OrthoCarolina. He promptly scheduled an exam and an ultrasound to check for DVT or a blood clot, given that I had recently returned from a trip where I sat on a delayed flight for hours. However, the ultrasound showed no clot, and no clear cause for the swelling.
Over the next few weeks, the swelling worsened, and Mike ordered an MRI. During the scan, the technician noticed something unusual and decided to image my entire calf. Mike reviewed the results and ordered another MRI with contrast. Soon after, he referred me to Dr. Jeff Kneisl, an orthopedic oncologist specializing in sarcoma at Levine Cancer Institute. Before we had even met with Mike to discuss the MRI results, Dr. Kneisl’s office called to set up an appointment. At the end of the call, I asked what type of doctor Dr. Kneisl was. When the nurse answered, “orthopedic oncologist,” I was stunned—it had never crossed my mind that this might be cancer.
At Dr. Kneisl’s office, a biopsy confirmed a malignant sarcoma in my calf, already at Stage 3 due to the tumor’s size.
Strength Through Treatment
My treatment began with four rounds of AIM chemotherapy, administered while I was admitted to the hospital under the care of Dr. Livingston at Levine Cancer Institute. AIM is an extremely potent chemotherapy regimen. The nurses wore protective suits to administer it, due to its toxicity. Adriamycin, one of the drugs in AIM, is so powerful it’s often called “the red devil” due to its red color and intense side effects. After each round, I went home to recover for three weeks before starting the next.
The chemotherapy was physically grueling. I was so weak that I couldn’t sit up in the car on the way home; I had to lie down across the back seat. During this time, I visualized the tumor shrinking to the size of a string bean—a hopeful image I kept in my mind. Thankfully, I responded well to the treatment, and the tumor began to shrink.
After chemotherapy, I had a brief recovery period before starting six weeks of radiation. The radiation continued to reduce the tumor as the sarcoma cells died. Finally, it was time for surgery. I feared I might lose my leg if Dr. Kneisl couldn’t achieve clean margins, but I was incredibly fortunate that the tumor had shrunk enough to allow him to perform limb-sparing surgery.
The Power of Community and Faith
During my diagnosis and treatment, my family, friends, and church surrounded me with love and support. My friend Kelly showed up daily at 6:30 AM with avocado toast, and my StoneBridge church community filled our lives with meals, prayers, and acts of kindness. They walked our dogs, accompanied me to appointments, and celebrated each treatment milestone with us. Facing the fear of losing my leg or my life, I prayed daily for the strength to see my sons get married and someday meet my grandchildren. I felt God’s reassurance: “You will!”
Moving Forward with Purpose
Since my diagnosis, each day has felt like a gift. I am blessed to have seen all three of my sons—Matthew, Andrew, and Sam—marry their amazing partners, Madie, Kristen, and Annabelle. I now have three wonderful daughters-in-law, and my grandchildren, Franklin and Liliana, are my joy.
Serving on the board of the Paula Takacs Foundation, I am motivated by the urgent need for more effective, less toxic treatments. During my own treatment, it was disheartening to learn that sarcoma survival rates and treatment options have barely advanced in over 40 years. I hope that through research funded by PTF, we can make a meaningful impact for sarcoma patients worldwide.
Sarcoma is a rare and challenging cancer to treat, and it’s essential to be under the care of an oncology team specializing in sarcoma. I am deeply grateful to Levine Cancer Institute and the Sarcoma Team for their incredible expertise and compassionate care. Their support was invaluable on this journey, and I hope to help others benefit from these advancements in the future.
