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Brain tumors -- in patients’ own words

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Americans and their media are discussing, and bemoaning, the announcement that Sen. Edward M. Kennedy has a malignant glioma in his left parietal lobe. Radiation and chemotherapy will likely ensue, neither of which will be pleasant.

For those unfamiliar with gliomas, the National Cancer Institute, the National Library of Medicine and the Mayo Clinic all offer some solid primers.

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But for reality, read the stories of people who have battled brain tumors themselves.

Here’s some advice from Steve H. at virtualtrials.com: ‘Avoid the ‘C’ word. Saying you have a brain tumor is better than saying you have brain cancer. People will want to treat you like your days are numbered in any event, but cancer sounds worse -- especially to younger people.’ The site features other survivor accounts too.

Lisa at the American Brain Tumor Assn. reflects: ‘If my tumor comes back, which it might, I will still cry. However, I won’t cry because I am scared, I will cry because I know what is on the other side of the surgery -- the recovery.’

Because family and friends face their own trials, the site includes some of their stories as well.

And then there’s a blog from Kate, a mom diagnosed with a glioma, who writes of a recent round of chemo: ‘I take naps daily so it was just in the evenings when I totally faltered in my energy. ... Quiet time has always been enforced in our home. I just am so tired by the time I lay down my head that the enforcement is lacking.’

That glimpse of daily life’s struggles and compromises while fighting a brain tumor is followed by a recount of her recent -- and idyllic -- Mother’s Day.

-- Tami Dennis

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