An Advocate for Brain Tumor Awareness
In 2014, Wendy Santana, Long Beach, was 47 and a professional fundraiser for non-profits serving economically disadvantaged populations in Los Angeles … a self-admitted workaholic. While she hadn’t felt well for some time, she characteristically powered through, not even taking a sick day that year.
“I really had to push myself and was very out of touch with the messages my body was sending me. I went to my doctor a few weeks before the brain tumor diagnosis and complained generally about my quality of life.” But her routine continued “normally” until the October night when she was lying in bed reading to her son, Noé, then 8, and had a grand mal seizure.
“That night it was all revealed,” recalls Wendy, who was rushed to a local hospital, drifting in and out of consciousness and unable to speak. An MRI uncovered a brain mass and a biopsy confirmed it was cancerous. Now that I know what the symptoms of a brain tumor are, I can look back and go, ‘Oh … no wonder I was having so much anxiety, trouble with numbers and so forth.’
“They wanted to operate the next morning and I was so out of it,” says Wendy. “I just wanted to get through things. Thankfully, my husband took charge at the point and we got second and third opinions.
“The first time we met with Dr. Liau, we knew she was the one. She said, “‘Oliogodendroglioma’s are my favorite,’” laughs Wendy. “It was her willingness to answer all our questions. My husband had to take me back to UCLA five times before my actual surgery. They did a functional MRI and a complete brain map. They also conducted testing to get a baseline of my language and vocabulary because the tumor was split between my motor function and speech areas in my left frontal and temporal lobes.
“After all that testing, we were pretty confident Dr. Liau and her team knew exactly what was going on. I knew it was serious, I was having brain surgery, they were going to crack my skull open,” she chuckles. “I wrote letters to my husband and family in case I didn’t wake up. But I was at peace, I felt like I was in the best possible place. We couldn’t believe the first neurosurgeon I saw just wanted to operate the next day with so little information. How could he have possibly known my tumor had grown across two different regions of my brain? “It’s been hard since my craniotomy,” shares Wendy, now 52, who had to go to rehab to relearn speech and motor functions (still a work in progress), overcome diabetes (caused by steroids), re-earn her driver’s license and no longer works—although she volunteers/fundraises for various charities, including Heart of the Brain. Due to where the tumor was located, she continues to suffer anxiety and sensitivity to light, crowds and noise.
“But it could have been devasting if I hadn’t gone to the UCLA Brain Tumor Center. I have a rare tumor, especially in women and children. Dr. Liau was able to remove all of the visible tumor. And now Dr. Cloughesy is my neuro-oncologist. Dr. Liau saved my life and Dr. Cloughesy has preserved the quality of my life over the past five years.
“There’s been a whole metamorphosis in my attitude and myself,” says Wendy, who celebrated her 27th wedding anniversary in 2019, witnessed her son’s bar mitzvah in 2018 and watches him play water polo on his high school team, looking forward to the day he scores his first goal.
In 2018, she walked in the Break Through for Brain Tumors 5K (and serves on the 2019 planning committee). “In the weeks after my craniotomy, I couldn’t imagine I would be able walk five blocks again unassisted, let alone 5k which is just over three miles,” she says, revealing that she now hopes to be able to participate in at least three 5k walks a year.
With her family, she’s traveled to Kuai, Mazatlan and the Rivera Maya; and plans to go somewhere special on her 30th wedding anniversary. She hopes to one day soon be able to don her pink roller skates again (a 46th birthday present to herself). She loves to read and took up cooking for the first time (Thai pork spring roll in a bowl is a new family favorite).
“I’m now using multiple pans and burners,” she laughs. “I never had hobbies. I’ve always been too busy surviving, over-achieving and overcompensating at work. The biggest blessing of this diagnosis is I have transformed from a workaholic to a more present wife and mom. I want to see my son graduate high school and college and get married … and maybe I’ll return to work as a consultant when he is out of school. I just don’t know how to state the amount of gratitude that I feel to be alive for these milestones,” she says. “It’s something I probably would have taken for granted prior to this journey.
“My husband, Luis, has said for the longest time I’ve been given a second chance to live. I created a website, www.2ndChance2Live.com, last year to help other people going through this.” She also took a writing class, wrote an article for Cancer Wellness magazine and hopes to complete a memoir. In 2018, she spoke at a KPCC “Unheard LA” event … all turning points in her recovery. “I want be an advocate for brain tumor awareness,” she says, “and mentor other brain tumor survivors.”
“It’s taken me a while to get to the point where I can allow myself to think about the future, but I’m very grateful to be here,” she smiles. “Brain cancer research is the least funded of all cancers. This is where I can be impactful and make a difference. I’ve done a lot of self-reflection and I really want to help others. The fact that I’m okay with not knowing what’s next is growth. I’m just practicing mindfulness and acceptance and learning to take care of myself and my family.”