My Sarcoma Story – Carly

CarlyCarly’s Story: I was 32 years old when I went to the doctor because I had coughed up some blood. They needed to do an x-ray but I was trying to get pregnant. So that same day I found out I had a softball size tumor in my chest cavity and that I was not pregnant. I was devastated when my family and I found out I had this rare cancer that is hard to treat.  My son was 4 and starting 4K. Seven years before I had thought I had been through hell when my right lung spontaneously collapsed four times over the course of four months in which I ended up having two surgeries. My tumor was also on the right side. I saw a team of doctors and the plan was to do 26 days of radiation, surgically remove the tumor in which I would need to have ribs removed and muscles moved to fill in space, and then have eight months of chemo. I flew through radiation. The surgery was horrible, to say the least, but my margins were good and I was truly hopeful I would beat this. Before chemo began, a scan showed another tumor.  It had metastasized which I knew deep in my heart was basically a death sentence, but I didn’t let this stop me. Chemo was harsh and I ended up in the hospital three different times. The tumor shrunk and I had it surgically removed.  Three months later I had another tumor and another surgery. I would start to feel good just to be brought back down. Three months later I had a complication from my first big surgery that had to be surgically repaired with more ribs removed and now I had a couple of small tumors. There were two options left; two types of chemo.

Words of Wisdom: With one option not working, I went to seek out clinical trials which are hard to find with sarcoma. I had to go to Houston, Texas, to find one! I still have tumors but after a T cell infusion I have been stable for almost five months. I am not going to lie –  there were days I didn’t know if I could go on, but I knew I wanted to desperately especially for my son. The bad news after bad news gets old fast, so I really try to stay focused on the good things in my life which are many! My family and friends have been a huge part of keeping me going and positive. Anxiety and fear are huge problems for me, but I have learned to take life moment by moment trying not to worry about the unknown. I’m enjoying life while I still can. I have much more to learn and I pray for a miracle multiple times a day. This cancer sucks and I will not let it defeat me!

Role of the Sarcoma Foundation of America: I am so happy that the SFA is bringing more awareness to this awful disease which affects mostly children. There needs to be better treatments and more information to better sarcoma patients lives. More research to find a cure!

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