My Sarcoma Story – Toni

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toniToni’s Story: Life changes when you are told you have Cancer!! My journey started in 2010 with a 10 lb mass in my retroperitenel area. They originally said it was an ovarian cyst. When they removed this they found it was sarcoma. I was 39. I went to the only Sarcoma specialist around, Dr. Elias at UCH. I also flew to Sloan Kettering for a second opinion. After 5 months two tumors came back. I did 4 rounds of chemo. After my first round my sister unexpectedly passed away. This made me fight harder!! I had another surgery in 2011 to remove those!!! Praise the Lord I was Cancer free. That I thought was the hardest year of my life. With two girls 13 and 15 and their only parent it was a rough time but it brought us closer and with the support of my family we made it thru. Life moved on and tried to live life to the fullest until another day when life changed once again. I was diagnosed with an aggressive form of treatment related AML (Leukemia). Spent many (over 200) days in the hospital, two bone marrow transplants, 12 days on a ventilator, and still dealing with side effects from all the chemo, radiation and transplants. All stemming from sarcoma! We need a cure, we need more research money! We need to make sarcoma known!!!

Words of Wisdom: Positive attitude! I never thought about what could happen I always just focused on the positive! My thoughts were this is just part of my journey. Just do what was necessary and get thru this. Chose to be positive. Keep fighting and tomorrow will be better. When the hard days crept in, I would allow myself 10 minutes a day to cry, feel sorry for myself and then made a choice for the rest of the day to smile and make the most of the situation! When I would walk at the hospital I treated it as my neighborhood saying hi to all the nurses, CNA’s, anyone I ran into :). My faith also kept me going!

Role of the Sarcoma Foundation of America: I first learned of SFA through a tweet needing volunteers for the Race To Cure Sarcoma™ in Denver. I volunteered for the first race in Denver in 2016 raised a lot of money for putting it together so quickly! What an amazing feat for a city that six years before only had a part time Sarcoma specialist doctor!! Now has an it entire sarcoma clinic! SFA has given Denver a chance to help fund research that is so import and needed. This also leads to more Awareness!! SFA is helping people know and realize we need research for the Yellow Ribbon! I now have Leukemia, but sarcoma is what lead to it from treatment. We need a cure and research for sarcoma and I am thankful SFA is a group that can generate research and more knowledge to find a cure!!


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