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.
There was no doubt I was leading the good life and I tried to take care of myself by watching my diet, exercising, and not smoking. I played collegiate basketball and tennis. After graduation, I was lucky enough to marry Kathleen, the love of my life, and over the next few years we brought into the world two wonderful children, Nicole and Matt.
This was all parlayed into a great 18-year career as an education professor and basketball coach at several universities in the Upper Midwest. In 2003, I took a leap of faith and headed into the world of private business. I joined American Family Insurance and eventually started what is now the Perry Ford Agency in Brooklyn Center, MN.
All Hell Breaks Loose…Listen to your body
I was feeling “off” and extremely tired during the fall of 2011. A doctor told me (TWICE!) it was nothing…”drink more water and get more rest.” In the spring of 2012 all hell broke loose for me. I was diagnosed with bladder cancer, then went through several months of chemo, a DVT and surgery at the Mayo Clinic. During that surgery, they also discovered I had prostate cancer, also dealt with surgically.
My slow recuperation began in the fall and continued into the spring of 2013 when a follow-up CAT scan came back all clear…Praise The Lord! The next scan was scheduled for six months later. However, in July, Kathleen and I were vacationing when I came down with a fever and felt ill. We ended up, late on a Friday night, at a rural hospital ER. While relating my symptoms, I noted the small hard lump in my abdomen, the doctor ordered a CAT scan. We were shocked when the doctor told us it was a tumor - we thought it was “scar tissue” from the earlier surgeries, but he said we should go to the Mayo Clinic immediately.
After a week of testing and a biopsy at St. Mary's Hospital, I was diagnosed with STAGE FOUR Leiomyosarcoma. My surgeon cautioned me not to look on the internet, I had an extremely rare soft tissue sarcoma with a high mortality rate that affects 1 in 5 million people. The “good news” was that one of the top soft tissue sarcoma experts in the country was at Mayo, Dr. Scott Okuno. After a day or two of reflection, my life and future was turned over to our faith, prayers and the medical team. I began treatment with 25 days of radiation, a four-week rest period, followed by lengthy (11 hours) surgery. It was emotionally draining for my family.
Following post-surgical complications, I began another long road to recovery, including trying to regain weight - 145 lbs was not a good look considering I stand at 6’5”. And so a “new normal” began for me; a new diet, new medications, and scans every three months. For almost three years, I managed to remain cancer free until removal of a fourth cancer, Basal Cell Carcinoma. Given my history, it was considered a “minor cancer” (if there is such a thing!) and successfully treated.
An update to my story:
Unfortunately, March 2017 scans showed a recurrence of sarcoma in the abdomen - five tumors, some as large as a tangerine. I had successful surgery at Mayo Clinic, however, August scans showed the tumors were still there. Another surgery, but this time with complications that kept me in the hospital for three weeks. A new pathology report brought a correction to my sarcoma diagnosis - D differentiated liposarcoma.
The next scans showed the tumors were still there. I was exhausted and did not want another surgery - I was able to get into a clinical trial, and two days before Christmas 2017, I began a new chemo regimen for the next five months. Seven cycles of doxorubicin in combination with Lartruvo™ (Olaratumab), synthetic monoclonal antibodies used to shrink the tumors. The first sarcoma patient to receive this combination at Frauenshuh Cancer Center, I was one of the 23% of patients who respond well (shrinking of tumors) to this new treatment.
However, I was in and out of the hospital due to side effects of the doxorubicin, which was stopped. A new medication, Neulasta® was used to boost my white blood cell count, aiding in recovery after each cycle of Olaratumab. I continue with the Olaratumab and Neulasta treatment – two cycles every three weeks, while monitoring the shrinking of tumors every couple of months.
Recently they found a new mass in my liver – metastic bladder cancer. The good news was that it was small and isolated in one spot, and after liver ablation at Mayo Clinic, we are optimistic. I live a “new normal” where nothing is taken for granted. I feel very blessed and am totally convinced in the power of prayer and the benefit of having a positive attitude. Having a positive attitude makes a huge difference in both healing and coping.
In my “new normal,” I’m even more thankful for the support of family and friends. My wife and children have been unbelievably supportive and loving…they are my reason for living. In addition, my agency staff have been fantastic in their support in making sure the business runs without a hitch. My hope is that everyone remembers that every day is a gift; that’s why they call it the present. I’m not sure why I was lucky enough to survive all of this. It’s obvious the Good Lord has more plans for me. I just know that I feel obligated to educate and inform others that there IS hope despite the darkest of diagnoses.