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    Posted January 25, 2014 by
    North Dakota
    This iReport is part of an assignment:
    Living with a rare disease?

    Living with Sarcoma

    Who knew that stomach problems would change our lives? My husband, William and I have been together since 1999. A couple of years ago he started having stomach problems. Nothing major but inconvenient. He had tests done but they came back as gastroenteritis or H. pylori. He came home from work at the end of July in 2012 and the pain was different. I ended up taking him to the local hospital. After tons of tests, xrays and a CT, they discovered a tumor. Your world stops at that word. When the first doctor told us tumor, she was unprepared. I am an action person and I wanted to know how big, what was being done and where we went from there. She didn't have any answers so I demanded that she bring in the surgeon. My husband was stunned by the course this visit was taking. When the surgeon came in thirty minutes later, he was amazing. He pulled up the CT and showed us the demon we were getting ready to battle. My husband had a tumor the size of a basketball in his abdomen. I know a lot of people were stunned. How do you miss something like that? My husband is 6'4 and only weighed 230 at his heaviest. It looked like he was getting a little middle age spread but nothing that jumped out at us. He had surgery the next day. I knew in my heart that the doctor was not going to have good news for me. He came out and was brutal in his honesty. My husband had cancer. For the second time in two days, my heart stopped. I knew it was coming but you never are really prepared. Then he tells me that he almost lost him on the table and had to stop the surgery. He got most of the tumor out but not all of it. Samples were sent off and we eventually were told that Will has retropertineal Liposarcoma. I had no idea what that was but it turns out that it is a fairly rare cancer that occurs as tumors in different parts of the body. The odds are that he will never be "cured" and will have reoccurences of the tumor. The surgeon was able to remove most of the tumor but some had wrapped around the major vessels in his pelvic area. He couldn't remove any more or he may have bled out. This has left him with constant nerve and pelvic pain. Our sons have been amazing. Xander is nine years old and Liam is thirteen. We have all had to change the way we live because now it is about the present and not the future. We have met some amazing folks in our journey to understand this disease and I am astounded by their fortitude. Liposarcoma is going to eventually take my husband. It might not be the cancer itself but the toll it takes on his organs will do the same damage. The four of us are trying to live everyday to the fullest but it has not been an easy battle. I have been amazed at the stumbling blocks and outright cruelty that we have come across since his diagnosis. I also thought those you worked with would be sympathetic to something like this but in his case it seems to have brought out the worst in some of them. There is no cure for this cancer and the research that is done all leads to surgery being the treatment of choice. That is a hard pill to swallow but we will do everything we can for one more day.
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