After being medically retired for eight years due to a malignant brain tumor, I decided to meet hope head on by stepping into a full-time position with the American Brain Tumor Association (ABTA)!
I’ve been serving in various volunteer roles with the ABTA since 2019. My official employment with the ABTA began on April 3, 2023. The ABTA is based in Chicago and because of the organization’s commitment toward growth, I am the first development/community relations professional brought on board specifically to build awareness, deepen support, and grow the ABTA’s partnerships in California and throughout the Western States.
As a side note, prior to the discovery of my brain tumor, I spent over 15 years constructing a progressive and successful career in non-profit fundraising and leadership. In fact, one of the things that hit me the hardest at the time of my diagnosis was the immediate loss of my career. At the time I couldn’t have imagined I would have the opportunity to restart my career one day and in such a meaningful way.
My brain cancer was discovered after I endured a grand mal seizure the night of October 15, 2014, while reading with my son in his bed.
It was just two weeks before his ninth birthday. I didn’t know what was happening. One minute we were reading and the next I was frozen in a fetal position. It was as if I had short-circuited. I could think, but I couldn’t speak or move.
I was afraid I was dying, and, in that moment, my greatest worry was how dying in my son’s bed would impact the remainder of his life.
Fortunately, my son noticed something was wrong and he shouted out for help. The paramedics were called and before I knew it, I was in a hospital emergency room. I recall drifting in and out of consciousness.
Although I still couldn’t speak, at some point I was awake enough to push out the word “stroke.” Suddenly, I was taken for a CT scan, which was followed by an MRI. Before I knew it, I was in a hospital room and my husband was sitting next to me. Doctors were informing us that a mass was seen on my brain scans. All I heard was blah, blah, blah, BRAIN BIOPSY, blah, blah, blah, MALIGNANT BRAIN TUMOR.
Within a few days, a biopsy was performed and the malignant brain tumor diagnosis was confirmed. We were informed of the diagnosis and the medical team wanted to perform brain surgery the next day.
I was still in shock so I couldn’t process what we were being told. All I knew was that I was relieved I didn’t die in my son’s bed, so in my mind I had already survived the worst-case scenario.
Fortunately, my husband had the presence of mind to get additional opinions and said “no” to having brain surgery the next day, so I was discharged from the original hospital I was brought to.
We ended up selecting the UCLA Brain Tumor Center where several different types of MRIs were completed in addition to various forms of language testing (as it turned out the golf-ball size tumor was spread across my left frontal and temporal lobes in the very areas responsible for language and movement).
A complete brain map was created at UCLA prior to my craniotomy which was performed by Dr. Linda Liau, Chair of the Department of Neurosurgery. Miraculously, Dr. Liau was able to achieve a gross total resection of all visible tumor on December 9, 2014. Although my recovery has been slow and difficult–i.e., the steroid I was taking to reduce the swelling in my brain caused me to become temporarily diabetic which I had to deal with while relearning how to walk, talk, and drive again–thankfully the brain has an amazing ability to re-wire itself and rebuild neural pathways.
I still have a few deficits including neurofatigue, take anti-seizure medication, and have consistent brain MRIs followed by meetings with my Neuro-Oncologist (UCLA’s Dr. Timothy Cloughesy).
The ABTA played a special role in my recovery. I still remember the first time I heard about the Los Angeles BT5K. It was just after my craniotomy, and I immediately knew that I wanted to participate one day.
At the time I was still battling over-stimulation, and sensitivity to bright lights and loud sounds. I was relearning how to walk, and my right side was extremely inflexible. I could barely make it three blocks on my own but just knowing about the event motivated me to become strong enough to walk the 3.1 miles of a 5K.
Eventually, that goal became a reality for me in 2018. The BT5K inspired me as did the other survivors! Fast forward to 2019 and not only did I serve as a volunteer on the BT5K L.A. planning committee, but I gave the survivor speech that year too.
Both steps were huge for me as I was still battling aphasia and had very halted speech. One of the ways I challenged myself as a committee member was to cold call vendors and previous team captains. These activities helped me to overcome the anxiety I had developed about speaking on the phone. I took notes and followed up with the people I spoke with which made me feel useful and reminded me of how much I missed being a professional fundraiser.
The ABTA has given me so much. From hope and inspiration to support, information, and a sense of community.
With the ABTA, I found my home and knew I was not alone. This was important because after enduring brain surgery, I completely lost my sense of self and my self-confidence.
I continued to serve on the BT5K planning committee through the pandemic and in 2020 I was given the opportunity to submit a video which was shared during the launch of the L.A. virtual event.
This was another challenge because I was still struggling with my speech, but it was one that I welcomed for a variety of reasons including the fact that it helped me continue to heal and grow.
The dedicated ABTA staff continued extending more and more volunteer opportunities which ultimately helped me to return to my core self. They published articles I wrote via the e-newsletter, MindMatters, and invited me to share my story during conferences and regional meetings.
My confidence eventually returned (as did my speech and mobility). Then, last year I was honored to be asked to serve on the ABTA’s Volunteer Leadership Advisory Council which brought me even closer to the organization.
I’ve often demonstrated my passion for the ABTA’s mission of advancing the understanding and treatment of brain tumors by writing and sharing posts via my blog, https://2ndchance2live.com/.
I love promoting the good work the ABTA does to support brain tumor patients and their caregivers, in addition to the advocacy and research grants which are consistently awarded.
I’m grateful for the opportunity to make a very real difference in the lives of people dealing with a brain tumor diagnosis and I feel incredibly fortunate to have the chance to live out my purpose where in my new role with the ABTA I get to be a part of something much more impactful for the brain tumor community than I could possibly accomplish on my own.
-Wendy of Long Beach, CA
About Meet Hope Head On
Because of the generous support from people like you, the ABTA has given over $35 million for brain tumor research. The ABTA’s campaign, “Meet Hope Head On,” created for our 50th anniversary, is focused on raising $50 million, in part to fund critical brain tumor research. This campaign is vital for continuing the kind of work that led to the recent FDA approval of vorasidenib, a breakthrough treatment for low-grade glioma.
