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.
Type of Sarcoma: Undifferentiated Pleomorphic Sarcoma
It was January of 2008 and I had turned 65 the year before. I had been incredibly healthy all my life - with the exception of one night, I hadn’t been in a hospital as a patient for over 60 years. One morning, after working out at Lifetime Fitness, my significant other, Connie Dow, noticed a bulge in my left posterior thigh. I was not sure what it was, I had not seen anything like this before. After some coaxing from Connie, I made an appointment with my primary physician.
My physician was not sure what this was – he asked me questions like ‘had I noticed this bulge growing, was I in pain, and was I concerned about what I was seeing’. We were both ready for me to come back in three months, but as I was leaving, he made the decision to order an MRI for a reason he never explained to me. The MRI happened a few weeks later and Connie and I were off to Ixtapa, Mexico for a two-week vacation.
One morning in Mexico, the phone rang and it was my primary physician. Right away I was concerned that my primary physician took the time to call me while I was on vacation. He suggested that I see the surgeon when I returned home. It was late February by the time I had an appointment with the surgeon. Connie and I sat in the room for an extended period of time waiting for the surgeon to come in for the appointment. When he arrived in the room he told us that he had made an appointment for us with a University of Minnesota physician by the name of Dr. Ed Cheng. Up to that point, my physician and the surgeon at Park Nicollet would not offer an opinion as to what they saw in the MRI that was of concern to them. Certainly, the word “sarcoma” was never mentioned.
It was mid-March by the time we saw Dr. Cheng and he performed a biopsy and asked us to come back the next week. At that appointment, he told me I had a large tumor growing in my thigh and told me about sarcoma. He described the course of treatment which would be four one-week hospital stays for 24 hour chemo therapy, surgery to remove the tumor, and a course of radiation. I was also referred to Dr. Keith Skubitz, who would be my oncologist.
I arrived at Fairview University Hospital on April 1 to begin chemo therapy. I remember being numb and very apprehensive about my course of treatment, especially since Dr. Cheng had told me that my chances of long-term survival were approximately 50%. From April 1 to about December 15 I completed the entire course of treatment.
In February of 2009 Connie suggested that we attend a meeting of a group she found on the internet called Rein in Sarcoma. I was not sure I wanted to do that as I was pretty beaten up at that time and my long-term survival was still very much in question. I arrived in Roseville at my first meeting of RIS and I met a number of people, including Lisa Greibel and Pete and Sue Wyckoff. This was the Winter Gathering of 2009.
I was feeling pretty sorry for myself until we went around the room and everyone described their personal sarcoma journey. What came to mind was a Biblical saying that if 10 people sit around a fire and each throw their problems into the fire, after they hear the problems of the other people, they would gladly take their problem back. One of the participants that day was Beverly Osterman. She described her battle with sarcoma and confided in everyone that she had given up on medical treatment and she had put her fate in the hands of God.
This day was the beginning of a new journey for me personally. It allowed me to quit feeling sorry for myself and to see a path to deal with my own sarcoma experience while helping others by getting involved with Rein in Sarcoma. Since that day in February 2009 to now, I am so grateful for my long-term survival. I don’t understand why I survived and many didn’t and thus I have been reluctant to express my feelings about my sarcoma journey. I feel lucky that I am here to help others with sarcoma and I have made many, many friends because of our common determination to find a cure for sarcoma.
Since 2009 I have been the Party in the Park Chair, worked on the Raffle Committee, served on the Board of Directors and an RIS liaison to other sarcoma organizations. I look forward to many more years of fulfilling the mission of Rein in Sarcoma.