On Saturday May 9, the USF men’s baseball team and the Meningioma Mommas (MM) are hosting the inaugural “Striking Out Brain Tumors Awareness” game as the Dons take on the Gonzaga Bulldogs in honor of National Brain Tumor Awareness Month.
MM members, brain tumor survivors, neurosurgeons and supporters are expected to be in attendance, to celebrate the strength and perseverance of survivorship and bring awareness to the harm of brain tumors.
Liz Holzemer, the founder of MM, is the mother of Dons’ left-handed relief pitcher Hunter Holzemer, who is currently in the midst of closing out his senior season on the Hilltop. To Liz Holzemer, the upcoming event is a full circle moment representing her journey of survival as well as her ability to rise above the naysayers.
In 2000, Liz Holzemer was told she was depressed and hormonal after telling doctors that she was receiving frequent migraines and was incapable of becoming pregnant. Unsatisfied with doctors’ recommendations, she pushed to get an MRI, and a scan revealed a baseball-sized tumor that pushed her brain all the way to one side of her head, pressing up against her optic nerve, sinus cavity and carotid artery. She was diagnosed with meningioma, a common brain tumor that primarily affects women.
Her neurosurgeon was shocked she was able to walk into the office and hadn’t yet slipped into a coma. “I had it when I was back in college, but I didn’t know it, because it’s a very slow growing tumor,” Liz Holzemer said. “So my doctor suspected I had it for at least 10 years, and I was considered young to have it.” She graduated from UC Irvine in 1991 with a degree in English and worked as a freelance journalist.
Even with that big of a mass in her skull, doctors told her that she had the “good type” of tumor because it was benign. Through her own experience after getting her tumor surgically removed, Liz Holzemer said that the term “benign” is a misnomer, as life after treatment is altered substantially with lingering side effects.
“Benign is not fine, because even if the pathology is not malignant, the impact on your life, on everything moving forward is not benign,” she said.
“You get that ‘Oh, geez, you look really great’ And my reaction is, well, you can’t see what I suffer from…You can’t see the kind of epilepsy I had. You can’t see nerve and facial pain. You can’t see, just like fatigue, just waking up and feeling this heaviness, and I’ve learned to navigate it.”
Liz Holzemer’s battle with meningioma is still ongoing, as she was recently told by doctors that an area in her head that was either scar tissue or residual, was in fact residual. In addition, she also has another meningioma, which is currently being monitored by UCSF. If the mass ends up enlarging, Liz Holzemer is at risk of impaired or a complete loss of vision.
Through her journey, her biggest advice is that you are your own best advocate. After feeling “utterly dismissed” by doctors with her symptoms because she was a woman, Liz Holzemer said, “I can’t emphasize that enough, not just for women, but for anyone. It’s like you really have to push for your own care.”
Because meningioma is the most common type of brain tumor and is labeled as benign, she said that it doesn’t get the same funding or attention as other brain tumors. When she went to her first brain tumor conference, she was confused as to why meningioma was grouped in with all the other benign tumors. “I thought, wow, this is really bulls–t,” Liz Holzemer said. “My tumor is so insignificant, even though it’s the most common, that I’m just going to get lumped together.”
To bring more awareness to meningioma, Liz Holzemer founded MM in 2003, a nonprofit organization centered around providing support and connecting those who are diagnosed with meningioma, as well as caregivers and family. The organization provides 24/7 online support and has a 24/7 private support group page. Although “mommas” is in the title, MM welcomes both mommas and papas, and also children.
For 23 years now, Stuart Gilkison has been a member of MM. At age five, Gilkison was diagnosed with Neurofibromatosis type 1. Around 2003, he began dealing with visual disturbances, and after failing a visual field test, he received an MRI and was diagnosed with meningioma.
Gilkison said he found MM through an online search and ever since age 35, he has been an active participant since, providing expert witness testimony in Social Security hearings since 2010, giving him the “opportunity to provide MM as a resource for those with meningiomas.”
“MM has given me a voice,” Gilkison said. “Since 2003 I have met some awesome members. I have traveled to get-togethers in Kansas and Colorado!”
Jenny Jones, the caregiver for her daughter Livi Jones, who was diagnosed with a lemon-sized meningioma 25 years ago, said that the resources MM has provided have been invaluable. “[Liz] had so many resources for the newly diagnosed,” Jenny Jones said. “There was an entire file of medical reports, check lists for the hospital, questions to ask, etc. It felt like I’d finally found my people.”
According to Jenny Jones, since her first brain surgery, Livi Jones has undergone 12 additional brain surgeries to “evict her unruly upstairs roommates.”
“Liz has held our hands for each and every one,” Jenny Jones said, who describes Liz Holzemer as the strongest woman she’s ever met. “There aren’t words to express how grateful I am for the friendship we have developed.”
In addition to support, MM fundraises through community support and partnerships, and uses the money to fund meningioma research at leading institutions and hospitals such as UCSF, Harvard University and Johns Hopkins. Liz Holzemer said her lifetime goal is raising $1 million for meningioma research.
Looking towards Saturday’s game, Liz Holzemer said that she’s very proud to be able to watch her son Hunter Holzemer play baseball, which was something that wasn’t supposed to happen according to doctors. Following the removal of her tumor, Liz Holzemer was told that she wouldn’t be unable to conceive naturally and that she should consider adoption if she wanted to have children. Despite the news, she received a call from her doctor one time after getting her blood work, telling her that she was pregnant. Now, she has two children: Hannah Holzemer and Hunter Holzemer.
“My mom has had a huge impact on my life,” Hunter Holzemer said. “She was always there for me growing up taking me to every game and practice and was always a positive support when things weren’t going great on the diamond…When my mom wants to do something, she finds a way to do it. That passion she brings when she’s excited and inspired about something, it’s the type of energy I try to bring to my daily life.”
Regarding the awareness game, Hunter Holzemer said, “I’m super excited for my mom. She’s been working on putting together an event like this for years now…It’s going to be a cool way to end my collegiate career at USF, and I’m really happy to see all the planning that she has put into this day all come together.”
