Mother of all Mommas
Meningioma group fills information void

By Carolyn Barry

Liz Holzemer. Photo by Carolyn Barry.

They say baseball will make you or break you, and for Liz Holzemer (MA '95) it did both. She led an exciting life, traveling the world and the United States with her husband and now-retired professional baseball player, Mark Holzemer, photographing and writing about their lives and the places they lived. But it was the baseball-sized brain tumor called a meningioma she survived after being diagnosed in 2000 that had the greatest impact on her life.

Frustrated at the lack of resources and inspired by her belief that her experience could help others, Holzemer used her journalism skills to create a nonprofit organization, Meningioma Mommas (www.meningiomamommas.org). Its Web site provides information about the condition, links to other resources, contacts with other meningioma sufferers and avenues to raise money for research.

"My goal is to make meningioma as well known as breast cancer or prostate cancer," said Holzemer. "I'm hoping that will be my legacy – through my writing – that more people will be aware of it. I want people to learn how to say it."

When the California native packed up her rusty old Honda after completing a B.A. in English at the University of California, Irvine, and headed for Colorado to study journalism, she never imagined she would be using her skills this way.

"Because of the tumor, I was able to reinvent myself and reinvent my writing," she said. "I never thought my master's at CU would make this possible. I was able to put these skills together for a different slant on free-lance writing."

Another of Holzemer's ambitions is to dispel the misconception that because meningiomas are labeled "benign," they are not harmful.

Any growth in your head, how can that be considered benign?" she said.

While meningiomas, the most common type of brain tumor, are not cancerous, they can grow in areas of the brain that inhibit vital functions, often affecting memory, behavior, senses and movement, and causing seizures. They have a 15 to 20 percent reoccurrence rate.

As Holzemer found, the slow-growing meningiomas present unalarming symptoms such as headaches, dizziness and minor seizures characterized by feelings of déjà vu. It is often not until the tumor is life-threatening that symptoms occur and it is diagnosed.

For Holzemer, her meningioma, which she refers to as her "evicted roommate," was discovered after she had difficulties trying to become pregnant. After multitudes of blood tests with no explanation for her condition, and the onset of symptoms such as headaches and dizziness, Holzemer's journalistic instincts kicked in.

She recalls thinking, "I'm a journalist, I have all these clues, but what's the final piece of the puzzle?"

An x-ray of Liz Holzemer’s tumor.

Her determination to dig deeper and find the cause of her inability to conceive pressed her to persuade doctors to run an MRI test. The result was life changing. The meningioma's size and location was so precarious that the neurosurgeon was amazed Holzemer was even able to walk into his office.

"Had I not pushed, if I hadn't have been trying to get pregnant and trusted my training and background in journalism, I wouldn't be here today," she said.

Holzemer survived two operations but still lives with the invisible aftereffects, including constant fatigue, paralysis to the right side of her face, thyroid problems and epileptic seizures, for which she must take medication for the rest of her life.

Doctors also told her that she would not be able to have children. Holzemer said she loves it when doctors are wrong – she now has two children, Hannah, 4, and Hunter, 19 months – both conceived naturally. They are the inspiration for the Meningioma Mommas name.

Limited information about the repercussions of post-tumor surgery and side effects of anti-seizure drugs on pregnancy made Holzemer all the more determined to use her background in journalism, and her story, to help others.

Her success speaks for itself. In the two years since Holzemer began Meningioma Mommas, the membership has grown to more than 1,000. She has also been recognized for her achievements, receiving the Women Who Inspire Us award from Woman's Day magazine, the 7 Every Day Hero award from Denver's KMGH-Channel 7 and the 9Who Care award from Denver's KUSA-Channel 9.

To date, Meningioma Mommas has raised $15,000, last year donating $10,000 to the Brain Science Foundation to further research into the link between hormones and the development of meningiomas. Her objective is to raise $1 million for meningioma research.

Holzemer attributes her accomplishments to trusting her instincts and not being afraid to follow her beliefs.

"I have faced the greatest risk in my life; I'm not afraid to take chances," she said. "If you can survive brain surgery, you can survive anything."

Vivacious and passionate, Holzemer has not allowed the meningioma to slow her down, though she still wonders how she was able to complete her degrees, teach, write and travel, while contending with a brain tumor.

Holzemer has just written a book about her story titled "I Have a What in My Head?," which she is currently shopping to publishers. By sharing her story, she intends to offer hope and inspiration to those afflicted with the condition.

"Despite this meningioma, I still became a mom, I'm still a writer, a wife, a daughter, a friend," she said. "It may have changed me, but it made me stronger."

liz@meningiomamommas.org