Join NBTS’s campaign to raise awareness about the importance of biomarker testing and clinical trials for patients with brain tumors.
READ MOREPublished on March 22, 2023 in Glioblastoma, Event Participant, Fundraising, Stories
Christina E. entered the lobby of the 2022 San Diego Comic-Con to reunite with friends for the seventh time in nine years. A lot had changed since she’d last attended the largest annual comic and pop culture convention in the world in 2019: a pandemic, for one, a career change, and her ability to speak without difficulty.
Side effects from radiation caused speech and mobility challenges — aphasia and apraxia — and upended Christina’s career as a psychologist. The Star Wars fan, who would not be sidelined by her brain tumor diagnosis, attended the event as part of her philosophy to make the most of every moment.
Christina began having unexplained episodes of numbness on the right side of her face and arm while driving in 2016.
“My husband and I carpooled to work together,” Christina shared. “I remember driving and feeling like I was losing control. I asked Joseph to drive the rest of the way, and I walked to my work to schedule an appointment with my primary care doctor’s office.”
Her health care provider ordered a CT scan that day along with two other procedures. Within an hour and a half of the scan, Christina received a call to say that a mass had been discovered, and she needed to do an MRI and a neuro consult.
“I didn’t know what to think,” Christina shared. “I was 30. I was doing my pre-doctoral internship in clinical psychology, so I was focused on what I would do next. I was hoping it was benign.”
Between Christina’s MRI and her surgery one month later, the tumor had doubled in size.
“The oncologist assumed it was glioblastoma, but they sent it out to UCLA to do their own analysis,” said Joseph, Christina’s husband. “It felt like an eternity to get that final result. They finally told us that it was a grade 3 anaplastic astrocytoma.”
The pair tried to obtain a second opinion before starting treatment after surgery, but they could not secure an appointment within the 30-day window of when Christina needed to start treatment.
“We felt stuck,” Joseph said. “We thought to ourselves, ‘Hopefully, the treatment we’re getting here is quality because it doesn’t sound like we have choices.’”
Christina began treatment with a mindset of doing whatever it took. First, Christina took low-dose chemo while receiving radiation, followed by 12 months of high-dose chemo through most of 2017.
“Around months 8-12, she started to get more nauseous,” Joseph explained. “The rest of the year, it was mostly fatigue where she would sleep all day during those last few days of each cycle. It was relatively a much better experience than we expected it to be until late in the year.”
Except for the week of chemo, Christina still went into the office for her doctoral internship and to defend her dissertation about parental identity — what informs one’s ideas of parenthood and the desire or lack of to have kids — in individuals 14-18 years old.
“That year, we just focused on that goal while in active treatment,” Joseph said. “She felt good the rest of the month, so she kept going with her dissertation. We had a way forward until after Christina stopped chemo because then we were like, ‘Well, what now?’ I remember the helplessness we both had because you’re just waiting for it to come back, and you’re doing scans every other month to keep an eye on it.”
Christina graduated in 2018 before traveling to the UK for a two-week celebration of her doctorate. Joseph had proposed to Christina while studying abroad at Oxford, so their return trip sparked some nostalgia for the couple.
A scan a few months after their trip concerned Christina’s new neuro-oncologist at UC San Diego. In April 2019, the neuro-oncologist recommended surgery, which determined that the tumor was glioblastoma with a different genetic makeup from her first tumor in 2016. By August, Christina started using the Optune device — the only medical device approved for the treatment of glioblastoma.
Christina began to gradually notice a loss of sensation on her right side that impacted her walking along with increased speech impairment. Following scans, Christina’s health care team diagnosed her with radiation necrosis — when radiation therapy causes permanent damage to healthy tissue. She started taking Avastin, which can help treat radiation necrosis, via infusion.
For Christina, it was tough walking, which required rehabilitation, and then losing her hair to wear an Optune device for treatment. On top of these challenges, speech and cognitive impairments — where she would lose a thought and forget how to get back on track — were devastating for the couple.
“That was a big deal because it took away her career as a psychologist where speaking clearly with clients is important,” Joseph said. “It was pretty heartbreaking to me because I’m very proud of her for completing her dissertation and defending it the year she was in chemo. A lot of people would have just given up or put it aside. She stuck with it, and she achieved her goal. She was working on getting licensed, and then that happened and prevented her from taking the board certification for licensure. That has been its own type of loss.”
“We were looking up a lot of stuff when Christina first got diagnosed in 2016 and came across a couple of brain tumor nonprofits,” Joseph said. “NBTS did a lot of walks and fundraisers. The big sticking point for us was research.”
The pair registered for the NBTS walk in Los Angeles in November 2016 while she was doing radiation.
“For me, it was very surreal,” Christina shared. “It was so fresh. I didn’t know where I belonged or what to expect at that time. We were thankful to NBTS for hosting walks and supporting research for trials and new treatments.”
The couple continues to participate in the Southern California Brain Tumor Walk & Race with their team Christina’s Super Squad composed of family and friends who want to drive research for new treatments and, one day, a cure.
“Brain cancer is one of the lower-funded cancers,” Joseph explained. “I understand that it affects maybe 5% of the general population, but it’s so deadly that we need better treatments. We’re still doing the basic standard of care for the last 20-30 years. Optune is one of the very few things that has been approved. For us, and the people who come after us, the thing that will make the most difference is new and better treatments.”
Whether attending the Brain Tumor Walk or Comic-Con, Christina and Joseph aim to make the most of each day. Christina’s favorite Star Wars character, female fighter Ahsoka, once said: “This is a new day. A new beginning.”
TAGGED WITH: brain cancer, brain tumor, #GBMDay, fundraising, Signature Event, San Diego Brain Tumor Walk & Race, Aphasia, Apraxia