I was diagnosed on April 30, 2009. A day I will never forget!
I had this pain and then later a lump in my left thigh muscle. The first doctor told me to put heat on it (before it got large) — and I did. It grew more. By that time my husband and I had moved to the Texas countryside to retire. Six months later, I would be diagnosed with MFH Sarcoma Cancer. You just never know when your lives may completely change, and you’ll never be the same again. You are the same, but with a new normal you could say.
I went to a new doctor in the country who I adore and she said it was probably a lipoma — we would watch it. That is what any doctor would have thought, I mean this thing was so rare! This cancer just kept growing in my thigh and it became painful. She sent me for an MRI and it showed it to be a lipoma and possibly a sarcoma. So I went for many months with this in my thigh. No one really thought it was a sarcoma!
I had surgery to remove it and the surgeon said it could be a sarcoma, but again, more likely to be a lipoma (which is non-cancerous). The surgery was done and it was biopsied at the same time. After further tests, it was diagnosed as a high grade MFH sarcoma (which is now called Undifferentiated Pleomorphic Sarcoma…UPS). I was blessed to have a wonderful orthopedic oncologist. She got clear margins and instead of keeping me in the hospital, she told me to go home (on crutches, of course), which would mean a lesser chance of any infection. She was totally knowledgeable and informative as to treatments and she shared her thoughts on it as well. She was great! I also saw a radiologist after surgery, who was just as uplifting. In between everything, I had several other opinions on treatment, which included chemo, radiation, and/or both. My choice after hearing all recommendations, was radiation only. My white count was already compromised, which was the main reason radiation only was my choice. I had 6 weeks of radiation. I drove myself back and forth to Ft. Worth every single day, 5 days a week, two hours of driving every day for treatments!
I have so many hobbies, so I kept busy doing sewing, playing my keyboard, and making things. I am always busy with family too! I joined Sarcoma Alliance and volunteered for them as well. Love that, and getting to talk with others who were in the same boat! Sometimes the conversations are great and other times we are very sad at the losses we inevitably face along our paths with sarcoma. Trying to stay upbeat can sometimes be a challenge!
I am now 5 years out from my diagnosis and feeling really blessed to be here. I have lost lots of friends to this disease, but I still have hope for better, more effective treatments or optimally, and hopefully, a cure!
My faith has seen me through a lot! I have met countless new friends online with sarcoma. It is rare and hard to find others with your disease, but online, you can talk/chat with others, exchange information and learn from their experiences.
I have places in my lungs we are watching now, which are currently stable. I will have another CT and an MRI in November. With sarcomas, you have to have regular tests to watch for metastasis and you have to be vigilante for any other lumps or anything out of the ordinary on your body or unusual pain. It is notorious for coming back, and although we have treatments, we need better ones. Just since my diagnosis, I have lost many friends to this disease. I have known several children now that we have lost to this horrendous disease — this really hurts my heart. I just recently found out that one boy is going to lose his foot to sarcoma. It isn’t fair that children have to go through this. It so makes my heart ache for them. With sarcoma cancer, you can lose a limb. I am thankful my doctor was able to save my leg. She commented that not that long ago, I would have probably lost my leg. Things can get better, but we need better treatments! There is hope on the horizon and new things are happening. We don’t get the funding that more prevalent cancers get, so it slows down research.
I will always have hope and faith! I will always pray because I believe in prayer and the power of prayer. My supporters include my husband of 47 years, John, two daughters, and lots of other family and friends. I know I am blessed, and I am so thankful every day. I look for the good in each day, because it is always there.
If you or a loved one has been impacted by sarcoma cancer, we encourage you to share your story. Sharing your story can be such an inspiration to others who are dealing with sarcoma in their own life and remind us all of the urgency to find better treatments in order to make an impact on the devastation that sarcoma cancer brings. Let your experiences help others become involved with raising awareness!