Something was clearly wrong with Blaine Butler. Her family, loath to make the 39-year-old research scientist feel worse, tried valiantly to ignore it during their 2018 Christmas Eve celebration.
“She looked awful,” her sister Brittney Butler recalled. “One of her eyes was pointing inward, she kept wiping her hands on her pants after she ate and what she said didn’t really make sense. I didn’t want to mention anything and make her feel worse. I thought her depression was just really bad.”
Months earlier Blaine had lost her job of 10 years and she seemed trapped in a downward spiral. Brittney, who is five years younger, was due to be married Dec. 30 in Charlottesville, where both women live. Blaine, the maid of honor, had bailed on pre-wedding festivities, a sign that the severe depression she had successfully battled since graduate school was deepening. But instead of attending the wedding, Blaine wound up in a psychiatric hospital where she spent six days.
Less than two weeks after her discharge, she and her family were confronted by shocking news that prompted a wholesale reevaluation of recent events, as well as those dating back years.
“I’m just happy that I’m able to move on,” Blaine said recently, “and that things went my way.”
Blaine’s first bout of depression occurred in 2002 when she was in her first year of a doctoral program in materials science at the University of California at Santa Barbara.
Unable to go to class, she returned to Richmond, her hometown, for a few months. She was prescribed Prozac, recovered and returned to California. Six months later she left school for good and found full-time work in a coffee shop.
Back in Richmond by 2005, Blaine began working as a research associate at a polymer film company. In 2007 she decamped to a better job in Charlottesville, where Brittney was working as a graphic designer.
“At that point I was always on medication [for depression] but we would change it up,” said Blaine, who saw a psychologist periodically for talk therapy along with a psychiatrist who managed her medications.
Her illness seemed to follow a pattern: after a few years the antidepressant inexplicably stopped working; her psychiatrist would prescribe a new drug and she would get better. Over the years she took a dozen medications.
The warning signs of an impending crisis were recognizable to Blaine and those close to her.
“I would start noticing I was walking slower, not really making eye contact with people,” she said. And she would obsessively reread J.K. Rowling’s Harry Potter or J.R.R. Tolkien’s Hobbit books, which “were the only things I could seem to focus on.”
In 2008 she landed a job as a research scientist. She enjoyed the work and seemed to thrive.
But in 2013 her mental health deteriorated. “I wasn’t doing well,” she recalled. “At work I just wanted to crawl under my desk. I had trouble focusing.” She took a short term leave, worked on coping strategies and returned to her job.
Four years later, her breakdown was more severe and her recovery slower. This time she took a three-month disability leave. “She would always say ‘I’m really tired’ and she was super stressed out about work,” recalled her boyfriend Kyle Gumlock, whom she met in 2014.
Blaine went back to work in February 2018, hoping to transfer to a job with less pressure. But just before what would have been her 10th anniversary, her supervisors gave her a choice: resign or be fired.
She chose the former and began working as a server at a variety of restaurants in Charlottesville.
The jobs rarely lasted longer than a few months at most. She was fired from each for forgetting to put in customers’ orders — or to deliver them. “I remember thinking, ‘If I can’t even waitress, I just want to die,’ ” she recalled.
She continued to see her longtime therapist and psychiatrist. “It seemed like all they were doing was throwing different combinations of meds at her,” Gumlock said.
By late summer Blaine had developed what she assumed were frequent migraine headaches — her sister had them — and was regularly popping Excedrin. Sometimes her balance was off and she complained that her vision had deteriorated and she needed new glasses. Gumlock repeatedly urged her to see a doctor.
“A lot of that time is a blur,” he said. Gumlock was working two jobs trying to cover the mortgage on the house the couple had bought the previous year. In early December, Blaine stopped taking her psychiatric medicine; it didn’t seem to be effective.
“Getting used to the medication”
A few days after the Christmas Eve dinner, Gumlock, who had never seen her so depressed, feared Blaine might be suicidal. Her mother drove up from Richmond and on the advice of Blaine’s psychologist, they took her to a hospital emergency room. Hours later, doctors decided to admit her.
“I thought, ‘If it’ll help me get better, fine,’ ” Blaine recalled. She was less enthused when she learned there were no beds in Charlottesville and she would be going to a hospital in Richmond, 75 miles away. She arrived at 2 a.m. Dec. 28 in an ambulance.
Records show that the psychiatrist who admitted her described Blaine as “willing for treatment, physically healthy, medically stable . . . [with] a very positive outlook.” She reported having migraines and was allowed Excedrin as needed.
“They got me back on my meds,” Blaine said, “but it felt like kindergarten. I don’t know how anyone ever expects to get better [there]. I wanted to get out of there as soon as possible.”
Brittney, who called daily and visited before departing on her honeymoon, said her sister seemed uncharacteristically confused. “I’d seen her depressed before, but not unable to answer questions,” she said.
Gumlock, who visited every day, was eager to have her home.
“I felt they weren’t doing anything except giving her meds,” he said. Her eye still looked off-kilter and Blaine told him she was dizzy and had fallen once. He worried she was overmedicated.
On Jan. 2 2019, the day before her discharge, the hospital psychiatrist doubled the dose of her antidepressant. The next day, she saw her psychologist and psychiatrist in Charlottesville.
Less than three days after her return home, Blaine and Gumlock were in their kitchen when she suddenly collapsed and began vomiting. He called 911. Blaine was taken to the ER where she was diagnosed with a “vasovagal episode” — fainting that results from certain triggers including stress. Gumlock said that Blaine’s psychiatrist told him he believed that “her body was getting used to the medication,” although she had taken the drug previously without incident.
Two days later, the same thing happened again. Brittney said that doctors suspected Blaine might have a urinary tract infection. But during the hours the sisters spent in the ER, Brittney noticed her sister making odd, jerky hand movements. Doctors wanted to send her home but Brittney objected.
“I told them her eye is crooked and it’s been like this . . . and she’s doing weird things with her face and hands,” Brittney remembered saying.
After she and their mother insisted doctors take a closer look, Brittney said, they agreed to admit Blaine to see whether she was having seizures.
An EEG failed to capture a seizure, but two days after she was admitted Blaine underwent an MRI scan of her brain, ordered after she reported double vision and was unable to move her right eye.
The resulting image was stark: a tumor the size of an orange had invaded the right frontal lobe of Blaine’s brain. She said that a doctor likened it to “an iceberg floating on top of my brain.” There was evidence of herniation, a potentially fatal condition that occurs when the brain is squeezed out of position.
The tumor was causing papilledema, swelling of the optic nerve that caused her double vision; it was also the reason for her odd-looking eye. The tumor was also responsible for a panoply of other symptoms: confusion, fainting, vomiting, headaches and, most likely, her recent severe depression.
Doctors told her she needed brain surgery and soon; it was the only way to definitively identify the type of brain tumor.
“I was with her when they told her,” Brittney recalled. “It was overwhelming, like the stuff that happens in the movies.”
Blaine had a different reaction. “I felt a huge amount of relief,” she said on learning that her deterioration had an organic cause and “wasn’t just depression. I didn’t even think it might be cancer.”
A frightening finding
Astrocytomas, of which there are four grades, are diagnosed in about 15,000 Americans annually. A grade 2 tumor is not considered aggressive, although it can recur as a higher grade tumor, while a grade 4 astrocytoma, known as a glioblastoma, is among the most lethal brain tumors. (Sens. John McCain and Edward M. Kennedy and Beau Biden are among its victims.)
Grade 2 tumors are typically treated with surgery, sometimes followed by radiation and chemotherapy. Because the tumor tends to infiltrate surrounding areas, doctors may not be able to remove it in its entirety for fear of causing damage to the brain or bodily functions.
The papilledema that distorted Blaine’s vision “had probably been there from weeks to months,” Asthagiri said. It is unclear why the doctors who examined her did not notice it.
But he noted, it is impossible to know whether the tumor caused Blaine’s depression.
Depression and behavioral changes are common symptoms of an astrocytoma, which can grow quite large, he said. “Brain tumors in general are very uncommon,” he added. Depression, by contrast, is common and estimated to affect nearly 7 percent of American adults.
But “especially in the setting of mental illness,” the neurosurgeon cautioned, “it is easy to disregard symptoms that maybe should be evaluated.” Doctors “need to be vigilant. Once [a patient] gets labeled, everything is viewed as a mental health problem.”
After recovering from surgery, Blaine underwent radiation and chemotherapy; she finished treatment in December 2019. Currently her tumor is under control and she is scheduled to undergo an MRI every four months.
Last week after a year spent working as a scientific grant-writer, Blaine was hired as a scientist at a biotech firm. She has resumed the activities she previously enjoyed: rowing, cooking and walking her dogs. In September she and Gumlock married.
Her psychological health has improved significantly and her new psychiatrist is weaning her off her antidepressant. Blaine is resigned, she said, to not knowing how big a role brain cancer might have played in triggering or exacerbating her depression.
“It’s like someone flipped a switch,” Gumlock said of the difference. “I think the consensus may be that she doesn’t have depression now.”
Gumlock said he wishes he had insisted that Blaine see a doctor about her headaches and vision problems. And he wonders why the doctors she saw seemed to reflexively attribute her symptoms to a psychological problem.
“I definitely feel it could have been caught earlier,” he said. “I would think if somebody’s dealing with depression, why wouldn’t you look further when they don’t respond?”