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 Metro area 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.
Life got even more complicated due to blood clots and subsequent multiple pulmonary embolisms, whose treatment involves daily self-administered blood thinner injections – and I hate needles.
My slow recuperation began in the fall of 2012 and continued into the spring of 2013. In March 2013 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 at a good friend’s cabin near Park Rapids when I came down with a fever and felt ill. We also noticed a small hard lump in my abdomen which concerned us.
We ended up, late on a Friday night, at a rural hospital ER and a doctor was brought in to check me out. That turned out to be a blessing! While relating my symptoms, I noted the lump in my abdomen, the doctor ordered a CAT scan and we all waited three hours in the ER (until 2:00 AM) to get the results. The doctor then came in and asked us if we knew that I had a tumor in my abdomen. Beyond shocked, we thought it was “scar tissue” from the earlier surgeries but he said it wasn’t and that we should go to the Mayo Clinic immediately.
Twelve hours later, I was admitted to St. Mary’s hospital for a week of testing and biopsy, resulting in shattering news: I was diagnosed with STAGE FOUR Leiomyosarcoma. My surgeon cautioned me not to look on the internet, but said I was dealing with 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 experts in the country on soft tissue sarcoma was at Mayo, Dr. Scott Okuno. So after a day or two of reflection, my life and future was turned over to our faith, prayers and the medical team assembled to help.
In September 2013, I began treatment with 25 days of radiation, then a four-week rest period, followed by lengthy (11 hours) surgery. It was emotionally draining for my family. The tumor that had been 2 pounds at diagnosis had grown to over 8 pounds when it was removed!
Following post-surgical complications, I began another long road to recovery, including trying to regain some of 65 pounds I had lost. At my low point, I was down to 145 lbs; 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 have managed to remain cancer free until a recent bump in the road when they surgically removed a fourth cancer, a Basal Cell Carcinoma, from under my hair line. Given my history, it was considered a “minor cancer” (if there is such a thing!) and successfully treated.
A New Normal
So I am now living 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. 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. I now live for the day and don’t worry as much about the long-term future. It’s all about appreciating the day-to- day moments, and the family and friends that surround you.