On My Mind...

It wasn’t until a doctor matter-of-factly informed me I was incapable of having children that the desire to become a mother took a deeper hold. Apparently, growing a massive meningioma brain tumor for a decade--if not longer—was the source of my infertility during my early 30’s. Even after the successful removal of the tumor, doctors maintained their diagnosis. But I was even more determined to have the title of mom bestowed upon me despite having two craniotomies.

Miraculously, nearly a decade ago I proved the medical profession wrong when I finally became a mother with the arrival of my daughter, Hannah. Then, 2 ½ years later my son, Hunter completed our family with his early, but thankfully healthy debut.

Ever since I became a mother, I’ve made it my personal mission to increase meningioma awareness and fund research, especially since meningiomas are the most prevalent primary brain tumor with the majority of them affecting women. However, just like other incurable diseases, men and children from all walks of life aren’t immune from brain tumors. And when someone is told, “You have a brain tumor,” it could be an astrocytoma, glioma, medulloblastoma, or schwannoma to name just a few of the more than 120 brain tumors.

Most are familiar with the more prominent people who have fortunately survived a brain tumor like actors Elizabeth Taylor(RIP) and Mark Ruffalo and recognize the names of those who have sadly lost the brain tumor battle including Ted Kennedy, Tug McGraw and Gene Siskel.
But what about the names you don’t read or hear about like your neighbor or the younger sibling your son plays baseball with unexpectedly stricken and often in the prime of their lives?

Sadly, this insidious disease doesn’t get the press, awareness nor funding it merits. Brain tumors are the leading cause of death in children under 18 and 190,000 children and adults will be diagnosed with one this year alone.

However, hope is on the horizon. The formerly celebrated National Brain Tumor Awareness Week during the first week of May has now merited an entire month to further advance its educational reach while remembering lives lost.

This Mother’s Day not only will I celebrate a decade of raising a healthy daughter and son, but I will continue to have hope that there will no longer be the need for an awareness month or even day for any type of brain tumor.

Meningioma on My Mind...

No this isn’t a Willie Nelson reprisal of “Always on My Mind” but it could be. Rather it’s an ode to an issue that is very dear to my heart and literally on my mind every day.

Nine years ago, I was on a mission to find out why I couldn’t become pregnant and have the children I so desperately wanted. Instead, at age 32 I was diagnosed with a baseball-size brain tumor called a meningioma and underwent life saving surgery eight days later.
Meningiomas are the most prevalent primary brain tumor and of those diagnosed, 65% are women.

Many misconceptions surround meningiomas, one of them being that they are harmless because 90 percent are classified as benign. In reality, they are often far from it, even deadly. Benign tumors can cause permanent disabilities and be life-threatening. Meningiomas 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.

Preliminary research has indicated that meningiomas could be hormonally fuelled. I was constantly told it was all in my head, I’m 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 or even kill.

When I was diagnosed I felt alone, isolated and frightened. I knew of no one who had survived a brain tumor let alone a meningioma. Those feelings were aggravated by the fact that they are often discounted by those in the medical profession and I was told I had the “good” brain tumor. Who knew I was this lucky. As far as I’m concerned, there is nothing good about any growth in your head!
I longed to connect with others who would understand how I felt. Rather than lament the fact there was no real support out there for meningioma sufferers and wanting to prevent others from feeling the same helplessness and fear I had, I created my own non-profit organization called Meningioma Mommas. We are a 24/7 online support group for all those affected by meningiomas. Today we have over 3,800 members worldwide with a handful of new members joining every day.

Providing a safe haven for people suffering from this devastating disease isn’t enough for me. I am deeply committed to raising money for meningioma specific research and hope to raise one million dollars in my lifetime. We’ve already raised $145,000 towards my goal.

My ultimate goal is to put meningioma on the awareness map and to eradicate this disease head on.

And Willie if you’re interested, “Meningioma on My Mind” does have a nice ring to it.