We know our bodies better than anyone and are our own best advocates. This is especially true for women who wear so many hats and put themselves on the backburner. We need to change our thinking and give ourselves permission to put ourselves at the top of our never ending “TO DO” lists. That’s not being selfish; it’s ensuring we’re taking care of ourselves. Otherwise, we’re useless to everyone one else.
You have to be your own advocate because no one else will go to bat for you. We have to trust that inner voice each of us possesses. It’s a lesson anyone can grasp and apply to his or her life regardless of the situation.
– Liz Holzemer, Meningioma Brain Tumor Survivor, Author, Founder Meningioma Mommas
I feel fortunate to be able to share this interview with Liz Holzemer, Meningioma Brain Tumor Survivor, Author and Founder of Meningioma Mommas, a non-profit, and pass along her insights to her experiences of self-advocacy while fighting sudden-onset infertility. Her words (above) ring true for all of us, and were the foundation for the beliefs that propelled her forward on what would become a battle for her life…Liz Holzemer’s discovery changed her life forever.
How and at what age was a brain tumor discovered?
After an agonizing and frustrating year of trying to determine the sudden onset of my infertility I decided to take matters into my own hands. Doctor after doctor and test after test led nowhere until I took the ultimate leap by advocating for myself and asked my doctors to schedule an MRI. I was diagnosed with a massive meningioma brain tumor at the ripe old age of 32. My persistence and gut feeling that something was wrong that convinced doctors I was right, which ultimately saved my life.
What can you say about the type of tumor?
It’s no surprise most people have never heard of a meningioma despite it being the most common primary brain tumor. About 90 percent of all meningiomas are classified as benign (a misnomer in my book) and of those diagnosed, 65% are women. However, they do not discriminate as they affect children, men, young and old as well.
What types of treatments did you have to undergo?
It’s an odd thing to say, but I was fortunate that two craniotomies lasting about 15 hours in total were my only treatment. I was spared radiation and chemotherapy, which can also be used in conjunction with treating meningiomas.
Do you have any permanent side-effects from the tumor and subsequent treatments?
I suffer from epilepsy and facial neuralgia (due to nerve damage incurred from my cranial nerves being severed during surgery).
How did you discover you had epilepsy?
I was having simple partial seizures prior to my diagnosis, but had no idea as my episodes were discounted as being a case of overdoing it or attributed to stress.
Do you still undergo any treatments?
I have an annual MRI to check on my upstairs status. Meningiomas do have a relative high recurrence rate at 15-20 percent so it’s something that’s always in the back, well in my case based on the location of my meningioma, the front of my mind.
Has your epilepsy changed your way of life?
The medication slows me down, which is the most challenging and heartbreaking at times with two young active children.
It’s also inspired me to be further my role as an advocate since meningiomas as well as other brain tumors and epilepsy go hand in hand.
You’ve written a book, Curveball. What prompted you to share your story?
I’d always written about other people’s stories, especially those with health challenges or illnesses so I felt I knew the right questions to ask of myself. I promised myself if I emerged from those double OR doors alive, I would share my story in an effort to raise awareness of this underfunded and neglected devastating disease.
Curveball: When Life Throws You a Brain Tumor is a candid account of my brain tumor journey. It’s a screwball mix of everything—humor, agony, triumph as well as a one-stop shopping resource guide with proceeds funding meningioma research.
Can you explain the organization you’ve founded after your recovery?
It wasn’t until after my daughter’s 1st birthday that I realized I had yet to process and digest the emotional impact of my brain tumor diagnosis, surgeries and recoveries. That’s when I knew I truly needed support.
I founded Meningioma Mommas www.meningiomamommas.org in 2003 to soften the shock of what I call the “brain tumor journey.” When you first hear you have a brain tumor, you may fear it is a death sentence, but for me it was a life sentence.
Meningioma Mommas is an innovative 501 (c) (3) not-for-profit organization dedicated to meningioma support. In addition to valuable resources, we also provide a unique 24/7 online forum for patients, caregivers and family members affected by this disease. Meningioma Mommas is well into its 10th year providing support and has donated $197,000 to meningioma research.
I’d like to thank Liz Holzemer for sharing her thoughts with all of us. Knowing her personally, I can tell you that not only is she a ray of sunshine, but she is also a walking inspiration. I do hope you’ll check out her book, Curveball: When Life Throws You a Brain Tumor, and please remember to pass along Meningioma Mommas as a resource to anyone to whom it would benefit.