Barbara’ story: a busy single mom with an unwavering positive attitude
Like most single working moms, Barbara was extremely busy balancing work and homelife for her then 10-year-old daughter, Sofia. She was also dealing with a stressful time in her life—renovating her home, working as an ESL (English as a Second Language) teacher, year-end schoolwork and studying for the ESL National Board Certification.
Then on a beautiful summer day in Asheville, even more pressure was about to get added to her plate. As Barbara was biking with a friend, she struggled to get her words out. She explained, “At the time I just blew it off thinking I was tired and out of breath from the bike ride.”
Shortly thereafter, Barbara started noticing that something was very wrong. As a language teacher, writing and journaling was something she did daily. All of a sudden it became impossible for her to journal, words came into her mind, but she couldn’t write them down, everything came out jumbled; having the same issue when trying to text message, the texts made no sense.
At this point she went to a primary care physician and stated to the doctor, “I either have a tumor in my head or I had a stroke.” Unfortunately, the test results didn’t reveal anything abnormal.
Just a few days later Barbara woke up to an odd feeling on the right side of her face and she lost feeling in her right arm. This time she headed straight to the hospital emergency department. Alerting the ER staff that these strange symptoms had occurred over the past three weeks, they immediately did a magnetic resonance imaging (MRI) scan. In less than an hour the doctor delivered the life-changing news, Barbara had a 6-centimeter brain cystic tumor over the language center on the left side of her brain. “I totally lost it, uncontrollably crying, I felt like this was sudden death,” said Barbara.
She couldn’t believe this was happening, then the next immediate thought was how was she going to tell her daughter. Overwhelmed and deciding it was too much, she asked the doctor if he would explain it to Sofia. Acting impervious to the diagnosis, Sofia just sat quietly, no tears, but in a state of shock. Barbara continued, “I didn’t sleep at all that night my ‘dark night of the soul’.”
Since Barbara is very passionate about language, making a 15-year career out of teaching ESL, the ER physician decided to send her straight to Duke University Hospital (Duke), where the neurology department could help preserve her language as much as possible.
Everything happened so quickly, Barbara’s tumor was found on Tuesday and a week later she was having brain surgery. The tumor resection was extremely successful with 98% of the tumor being removed. But after the biopsy, Barbara experienced even more devastation, learning her tumor was the most aggressive form called Glioblastoma (GBM) Grade IV.
“I decided not to focus on the prognosis of the diagnosis but rather put all my energy into doing everything I can to stay alive longer,” said Barbara. As a daughter of two mathematicians she is very knowledgeable about how the bell curve works and wants to be on the tail end of that curve not in the middle.
At this point there was no need to keep traveling to Duke for every appointment, so they referred Barbara to a local cancer practice, Messino Cancer Centers where she was introduced to Dr. Michael Messino. Barbara said there are so many benefits to going to your local oncology practice. She said, “Dr. Messino goes way back in the Asheville community. Knowing the medical experts in the community helped me because he would communicate with my team at Duke, my neurologist and even my acupuncturist. And without a caregiver, it’s helpful that my treatment and care is so close to where I live.”
After completing the standard of care with radiation and oral chemotherapy, Dr. Messino had to consider other treatment possibilities. When Barbara didn’t qualify for a clinical trial, Dr. Messino reassured her of other options. Ultimately, the decision was made to try a medical device called the Optune® which sends electric fields to the tumor, helping to slow or stop GBM tumor cells from dividing.
“Barbara is an incredibly determined and motivated young woman who has struggled to reach the goal of cure while trying to live as normal a life as possible, including caring for her very precious gift – her daughter,” said Dr. Messino from Messino Cancer Centers.
Dr. Messino said using Optune® is a real commitment from the patient, the fact that Barbara wears the device for approximately 18 hours a day truly shows her vow to herself and her daughter to do whatever necessary to fight this disease. Her dedication is paying off, after one year of using the device, she is doing very well with no evidence of tumor progression.
“One of the most difficult things about all of this, was having to give up my teaching career and go on disability,” said Barbara. She does keep busy though, with her daughter at home doing virtual school, she walks and does yoga daily, and all the paperwork that goes along with being sick. She also recently applied to be an Optune® Ambassador, hoping to help other GBM patients.
Barbara is still trying to figure out what is next, she recently asked Dr. Messino if she should plan for one year or five years, or 40 years and he replied, “plan for 40” so she remains focused on treatment, has a plan for Sofia and continues to use her support system when needed.
She is also very grateful to the Inheritance of Hope, a non-profit helping families cope with facing the loss of a parent. This organization provides all-expense paid retreats where families with children under the age of 18 create lifelong memories while receiving the tools to navigate the challenges of a parent’s terminal illness, similar to Make A Wish Foundation for Kids.
Barbara and Sofia went to New York City and did all the fun touristy things, like seeing the Rockettes, ice skating in Central Park and viewing the Statue of Liberty by boat. As Barbara is explaining the exciting details of the trip, Sofia yells from the other room, that her favorite thing was hearing Idina Menzel, the voice of Elsa from Frozen, sing live. In addition to sightseeing and sessions designed for gaining tools to manage the challenges of a parent’s illness, the purpose of the trip is for the sick parents to start building their legacies, something that will last beyond them. During the retreat Barbara created a video for Sofia and plans to continue building her legacy with videos and written stories from her life. Barbara is so appreciative for the opportunity to have this amazing trip and memories and ultimately to leave Sofia with her legacy video and plans for more.