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  • Mantle cell lymphoma (MCL) is one of the rarest of the non-Hodgkin's lymphomas (NHLs), comprising about 6% of NHL cases.There are only about 15,000 patients presently in the U.S. with MCL.

    Once we got the diagnosis of MCL we stopped socializing. We hibernated. We needed this time to grieve, to process things. Some of our extended family was told the news but we didn't tell a lot of other people in our immediate sphere.

    My husband is not one to seek attention and he was very uncomfortable talking about it to others. He didn't tell his colleagues or staff the news for quite some time. We needed to "get used to it" first.

    I told a couple (who were our closest friends) and I know they were as shocked as we were. There was not much to say.

    It hit us both hard for about 2 -3 weeks. I felt like I was walking around in a fog. I went about with my usual daily activities but I felt so different. I would walk around Publix, shopping for groceries, when suddenly a song would come on the overhead and trigger a memory and then I would burst into tears. I was embarrassed but I seemed to have little control. People would either look at me with curiosity, or avoid me.

    We told our son, he's 16 years old, and our only child, But we told him the bare minimum and that we were still out there seeking other medical advice.

    My husband and I would talk about THE DIAGNOSIS those first few weeks. He was very stoic and always insisted that he didn't feel sorry for himself. " I've lived a good life, I've been lucky. I just feel bad for these kids you see who get cancer and have no chance at a life".

    But he would sometimes burst into tears and then be amazed at his response. He would turn to me and say, " I don't know why I'm crying? I don't feel sorry for myself."

    With a deep sigh and a heavy heart, I responded , "because it's all just so very sad."
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