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sarcoma story, as a patient,
survivor, or as someone who has lost
a loved one to sarcoma.
The world took an unexpected turn for our family on March 14, 2017. Starting in late September 2016, I had a pain in the top of my foot that would occasionally come and go. I visited my general doctor and they could not determine an exact cause, possibly some type of arthritis or even gout.
Fast forward to Christmas, and the pain was no longer going away, despite a very clean diet that would have eliminated “gout.” At this time, I was working out seven days per week, so we assumed it was probably a stress fracture. On March 10, I went back to the doctor and they took an X-ray, which the general physician thought looked normal, but would send to the radiologist for an official review. Due to my experience with a benign bone cyst during my younger years, I knew how normal and abnormal bone cortex appeared. In lieu of waiting for the radiologist, we called a good friend, who doubles as an Orthopedic Surgeon, and scheduled an MRI the next day. On March 14, 2017, what we thought would be a stress fracture diagnosis, turned out to be a type of malignant tumor. This was also the first time we heard the words Ewing Sarcoma.
Upon word of this potential diagnosis, we were able to get an appointment the same day with one of the top Orthopedic Oncologists in the country, Dr. Denis Clohisy. Dr. Clohisy said it was “malignant until proven otherwise” and we would need a biopsy to discover the details. They scheduled the biopsy for Monday, March 20, and I underwent surgery to go into the bone in my foot to biopsy it. Suspicions were confirmed, it was cancer. I had a PET scan and CT scan on Thursday of that week. The doctor called Friday to confirm my tumor was Ewing Sarcoma, but the rest of my scans were clean! So, we now knew what we are dealing with, and we moved forward.
We were lucky that we caught the tumor in a fairly timely manner. The tumor was on the smaller side for Ewing Sarcoma (5cm), however the location in the foot is very rare. At this time, we learned the treatment would be long and intense, up to 12 months and up to 18 chemotherapy treatments. We also learned the potential for partial or full amputation of my foot. To say we were shocked would be an understatement! We received a second opinion from the Mayo Clinic and talked to a top Sarcoma doctor at Sloan Kettering, but it was the caring nature of Dr. Clohisy that made us choose to pursue our treatment at the University of Minnesota.
Fast forward to July 2017. I had completed five complete rounds of chemotherapy and it was time for our first scans. This was important to determine the progress of the disease and also surgical options. The scans all showed response to the chemotherapy and Dr. Clohisy said it best: “your body is responding to those icky drugs.” This was also the first time we heard the real potential of a resection of the big toe and first metatarsal vs. a below the knee amputation. We were excited, but would have to wait six weeks for a final MRI, the week prior to surgery, to confirm.
Our luck was confirmed, in early September 2017 I had a successful resection surgery of my big toe and first metatarsal. We received the pathology back from the surgery and got a dose of great news. The tumor was 100% killed and therefore the margins were very successful.
We completed the treatments in November 2017 and then started getting back to a normal life. We are excited to live this new “normal”! Thank you all for the prayers, well wishes, favors, and support. It means more than we can ever convey.
Blake, Carey, Patrick, Colin, Charlie, and Molly