The first part of May usually has people thinking about that special box of chocolates, a floral arrangement or even Hallmark's latest and greatest record-your-own greeting cards for mom on Mother's Day. I'm thinking about meningiomas instead. I think about them a lot, especially as the 11 th Annual Brain Tumor Action Week kicks off today.

A mening-what you ask? I had the same reaction eight years ago when I was diagnosed with a baseball-size meningioma brain tumor that could have very easily claimed my life. I survived two craniotomies and went on to have two healthy children I was told I was unlikely to have.

Meningiomas are the most prevalent primary brain tumor and of those diagnosed, 65% are women. According to Dr. Peter McLaren Black, the Franc D. Ingraham Professor of Neurosurgery at Harvard Medical School and the Chief of Neurosurgical Oncology at the Dana Farber Institute, it is now believed that a new meningioma is diagnosed in approximately one in a thousand people each year and that at least 138,000 people in the United States are living with one.

Many misconceptions surround meningiomas, one of them being that they are harmless because 90 percent are classified as benign. Benign-baloney. In reality, they are often far from it-even deadly.

Benign tumors can cause permanent disabilities and be life-threatening. They also have a 15 to 20 percent reoccurrence rate so survivors must be monitored for the rest of their lives and live with the fear that they may come back. I revisit the dreaded annual MRI every January to ensure there are no signs of regrowth. Knock on my noggin-my most recent MRI remained clear.

Preliminary research has indicated that meningiomas could be hormonally fuelled. I was constantly told it was all in my head, I was female, hormonal, stressed out- the modern woman's plague! They are also slow growing so as a result of all these factors many meningiomas are misdiagnosed, especially as some of the symptoms can be attributed to menopause, or are not detected until they start causing serious deficits.

When I was diagnosed I felt alone, isolated and frightened. I knew of no one who had survived a meningioma, let alone a brain tumor. Those feelings were aggravated by the fact that they are often discounted by those in the medical profession as I'm still told by some doctors that I had the "good" brain tumor. As far as I'm concerned, there is nothing good about any growth in your head.

Meningiomas may cause serious deficits including blindness, deafness, paralysis, cognitive changes and severe mood swings. I could go on. But I feel I got off lucky with minimal side effects- epilepsy, chronic fatigue and facial pain. Meningiomas have claimed the lives of far too many. Since I established my non-profit, Meningioma Mommas, I've lost a handful of women to this so called benign brain tumor. I'd like to honor the memories of Ann, Trisha, Janice, and most recently Karen Peak, a 44-year-old wife and mother from Salina, Kansas.

Try explaining to her husband, Tim, and their 8-year-old son, DJ, that Karen lost her 10-year battle to a good, benign tumor. Karen endured four surgeries, radiation, chemotherapy and up to 30 prescribed pills a day in hopes to halt the tumor. She had a brief respite in between surgeries and treatment, but in the end, the tumor tragically prevailed. In Tim's words, "Karen used to be so alive and so beautiful, but she just became a shell of herself."
It's unacceptable that another Karen should have to suffer. I'm proud of the fact that my organization-with over 3,000 patients, caregivers and family members-has already raised $90,000 to fund meningioma research for the Brain Science Foundation and the Meningioma Research Laboratory at the University of California, San Francisco. Research dollars are not easy to come by. Thankfully, the just newly diagnosed will have a better outcome and prognosis because of the Dr. Peter McLaren Black's, the Dr. Elizabeth Claus', the Dr. Michael McDermott's and the Dr. Anita Lal's of the world who have committed their lives to treating, removing, curing, understanding and researching meningiomas.

I can't deny I enjoy a nice See's candies or beautifully arranged gerbera daisies, but I'd prefer a cure to an underfunded and not well known brain tumor. It's May and I've got meningioma on my mind.