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Thought it was Post Polio Syndrome

by Linda

Our experience with brain cancer was short. My mom had been suffering with weakness in her right arm, the inability to write, and difficulty walking. Since she had polio as a child, and already had difficulty walking, nobody thought about a brain tumor. Rather, she saw two older neurologists who believed she was suffering from post polio syndrome. She was then referred to another neurologist, for treatment, and he thought maybe an MRI should be done, "Just in case."

Sure enough, there it was, a giant anaplastic astrocytoma was the cause of her symptoms, located in the front right temporal lobe. When I think of the months wasted, seeing doctors for the wrong reasons, then finally getting an answer, I could just cry. She was diagnosed on March, 2009, and passed away May 12, 2009. Just two days after Mother's Day. The biopsy confirmed what was seen on the MRI. A stage III tumor located in an inoperable area. Mom was on Decadron for swelling, and did chemo and radiation for a week, then decided to quit. Best case scenario was nine months. The worst was two. I set her up with hospice at the home as quickly as possible so she could live out her days the way she wanted to, at home, and comfortable. Those were her wishes. Her memory declined rapidly and the tumor continued to grow. She started sleeping almost all day, didn't know who we were, and lost her ability to communicate. It was so sad. My mom died with grace and dignity.

She eventually lost her choking reflex, so it was time just to keep her comfortable with morphine. She died a little more than a week after we had to stop feeding her. I was sitting across from her the day she took her last, raspy breath. It was finally over. She was at peace and my tears started to flow. I honestly cannot stress enough how important it is to let a brain tumor patient decide what they want, how they want to live out the rest of their lives, whether they survive, or not. Even if it is not what we want. Hospice saved the rest of the family. Because of them, we knew what to expect and death was not the scary monster in the closet, but rather a natural part of life. I am sad to have lost my mother, and so angry we could not do anything about it, but I am deeply grateful I was able to be by her side in her last two weeks. It was a gift only my mom could have given me.

National Brain Tumor Society

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