Curveball.jpgI’m delighted to have an interview with Liz Holzemer today. When I heard her speak in April, I was so inspired by her courage and fortitude as she told the story of how she handled a scary diagnosis 10 years ago with a glorious sense of humor. After a frustrating year of trying to find the cause of her infertility, absent periods, migraine headaches and seizures, she finally pushed for an MRI that saved her life. It revealed a baseball size meningioma brain tumor. Thankfully, it was benign since as many as 10-15% of meningiomas are cancerous. Yet her doctor initially didn’t think she would live.

Liz required two craniotomies and earlier this year celebrated what she calls her “second chance” anniversary as a 10-year thriving survivor. Since her recovery, she’s used her second chance at life to increase meningioma awareness while educating people and funding research for this sadly underfunded disease. She created her nonprofit, Meningioma Mommas,  and wrote her inspirational and informative book, Curveball: When Life Throws You a Brain Tumor to help achieve these goals.

What was the initial prognosis? Even though I was told I had the “good kind of tumor,” by the time I’d met with my neurosurgeon I was very close to slipping into a coma and dying. My meningioma was pressed up against my right optic nerve, carotid artery and sinus cavity. The tumor had actually shifted my brain to its mid-line. I was at risk for vision loss, left sided weakness and paralysis. ??

What was your first response when you found out you had a brain tumor? I was stunned that at a relatively young age (I was 32 at the time) I had a brain tumor. I was in the best shape of my life too. What was even more disturbing was the fact my body had harbored this foreign mass for a decade and possibly longer, totally unbeknownst to me. The first question I asked my neurosurgeon was “Will this kill me?”  ??

Liz Holzemer.jpgWhat initially motivated you to fight? Being told you can’t have the children you so desire and wanting so desperately to prove that diagnosis wrong. Not wanting my husband, Mark, to lose his wife when he’d already lost his mother to breast cancer as a young boy. I love hiking and my mother reminded me before surgery, I had a summit to reach.??

What keeps you going now? My miracle children, Hannah and Hunter. Knowing that every day I have an opportunity to alleviate the fears and feelings of hopelessness that a newly diagnosed patient experiences when told, “You have a meningioma.” I consider it my way of paying forward what I wished I’d had in the eight days I was stumbling around dazed and confused prior to my surgery.
How do you keep your sense of humor about what you’ve gone through? I’ve always had a quirky sense of humor to begin with and I must say that my neurosurgeons sure did a number tightening up the bolts during surgery. Brain tumors and brain surgery is heavy, heavy stuff. I’ve found that a healthy dose of brain tumor humor is a great equalizer and coping tool. Upon first hearing I’m a brain tumor survivor, a typical reaction is one of seriousness and unease. As soon as I crack the first joke, the guard is instantly let down and that’s when the real dialogue begins. Humor is not only an ice breaker, but a reminder that sometimes you have no choice but to laugh. Facing brain surgery, or any devastating illness for that matter, is no easy task, but if you can laugh at yourself, it certainly lightens up the recovery load.??

What are the misconceptions being put out about meningiomas? How much time do you have?  Nearly every day I hear stories from newly diagnosed patients whose doctors tell them a meningioma is nothing to worry about; it’s a lesion; a freckle;  go home and live your life.   And while the majority are benign, that label is a misnomer. I don’t consider life altering deficits (in my case, epilepsy, chronic fatigue, and facial neuralgia) caused by a brain tumor which impact the quality of our life, benign by any means. I can’t begin to recount the number of people I’ve met whose meningioma has resulted in loss of jobs, broken marriages, shattered families….and all because of supposedly winning the lottery with this type of brain tumor.
How does that make you feel? Don’t get me started! Angry, fired up, even more passionate to eradicate the myths and put meningioma on the worldwide awareness map. I’m also astounded by the lack of funding this tumor merits, especially as the majority of those affected are women. But meningiomas don’t discriminate. I know children who’ve had them as young as 5 and men in the prime of their lives suddenly struck down by this disease. And sadly, I’ve read more obituaries than I care to about mothers taken from husbands and young children far too soon.??

How do you stay positive? I’ve always been an upbeat person. I am a Leo after all! It’s a cliché, but I don’t sweat the small stuff. I’m alive and every day I have a reason to make an impact. I truly believe this is my purpose at being granted a second chance at life.??

Describe your attitude today? Upbeat and energetic. I do go through phases where my tank is completely empty. I’ve learned the hard way to not to push my limits and embrace naps when I hit that proverbial wall. It was a painful process, but I eventually accepted that I can’t change the fact I had a meningioma, so I continue to focus on what am I going to do with it in a positive way. I’ve thrown my pity parties. Next!

??How powerful do you feel now? I feel I’m making inroads on the meningioma frontline, but I’m still a long way off. It’s like training for a marathon and I’m probably at the 5K mark. I’m fortunate to have a few brilliant neurosurgeons and researchers on my side who take my work seriously and believe that benign doesn’t necessarily mean good. ??

How important do you think your positive spirit is for staying alive and thriving? It’s absolutely critical. The mind is incredibly powerful and if you allow it to go to those dark corners, you can easily allow yourself to get swallowed up by negativity. There are not enough hours in a day and days in a week to accomplish all that I wanted done yesterday.??

How did you change your relationship to faith after your diagnosis? I’m not a particularly religious person to begin with, but I definitely believe in a higher power. For a period of time I went through the stage I believe most of us do after a major life altering event–the why me? What is my purpose? What am I supposed to do with this? It took years of healing before I truly grasped my new found calling.??

What would you advise people who are diagnosed with or know someone diagnosed with cancer to do? In the 7 years I’ve run Meningioma Mommas, the common reverberating theme is as much as we love and need our supportive family, friends, neighbors…, it truly makes a difference to connect and bond with people who h
ave already walked in the shoes you are just breaking in. They “get it” and can absolutely identify with the yearly MRI anxiety; side effects from treatment and medications; the up and down days…
What’s your best life lesson in general? I only had to wait 32 years to learn how to break out of my genre and comfort zone. No one asks for a brain tumor, but for me it’s been a bizarre gift on numerous levels. I take greater risks. I figure if I can survive having my head carved into twice, I can share my story with large audiences; approach any editor, even if I get the door slammed in my face; maybe finally learn how to dive or drive a stick shift!

It’s also allowed me to use my writing to be a voice and convey the message that we are our own best advocates. This is especially true for women who put everyone and everything else in their lives at the top of their “TO DO” lists.

Check out Liz Holzemer’s book, Curveball:
When Life Throws You a Brain Tumor
. Her courage, positive spirit and sense of humor will motivate you to appreciate your own life and rally you to not waste a precious minute! And for more info on meningiomas, visit her site Meningioma Mommas. If you can spare it, they can use donations.

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