Potsdam woman meets brain tumor, chronic illnesses with optimism

Feb. 22—POTSDAM — Imaging having a migraine for 17 consecutive months.

With no warning, parts of your body involuntarily paralyze and you fall to the floor. You start to hallucinate at random times, which leads to blacking out, and returning to consciousness in the middle of traffic with no idea how you got there. You can't eat because your body doesn't break down food the way it's supposed to. The risks associated with your symptoms become so severe you have to quit your job and put your entire life on indefinite hold.

The logical next step is to see a doctor. However, sharing an experience all too common for people with chronic illness, the doctor says you're either imagining the symptoms, or even lying about them. Later on, while getting an MRI that could find a trigger for these chronic health problems, the doctor says they've found a brain tumor instead.

This is Hallie S. Boyer's story. The 25-year-old Potsdam resident started her life ambitious, and if anything, has become more ambitious. However, her multiple co-occurring chronic illnesses have now ground her life to a halt. She's a unique case that might sound like an episode of the TV medical drama "House."

Ms. Boyer is a Clarkson University science student whose academics are on hold while she tries to get treatment for a myriad of neurological issues. She loves doing biology field and lab work, and wants to someday become a college professor. She's spent countless hours doing volunteer work on and off campus. That's all paused indefinitely.

"I've been very discouraged because the careers I once dreamed of doing are too dangerous to do," she said. "I've been in a bio lab since 2018, and now I can't do that anymore. It's really hard being so ambitious and ... to completely have to take a break for an uncertain amount of time."

Her life partner, 29-year-old Brandon S. Wright of Potsdam, describes Ms. Boyer as "one of the most hardest working and passionate, compassionate, beautiful souls I've ever met. And that's why I fell in love with her, and she can't do any of it, which is kind of heartbreaking."

Ms. Boyer's earliest health struggles go back to when she was about 4 years old. She had developed cyclic vomiting syndrome, meaning she threw up every day from then until about age 18 or 19.

"I was telling my doctors at age 4: 'Every night I'm getting really sick and I'm really nauseous and can't stomach a bite of food,'" Ms. Boyer said. "I've been sick my whole life and so many doctors told me that it's in my head, I'm lying."

By age 12, she was so severely underweight that she needed an emergency surgery, but even that didn't stop it.

"I got sick daily until I was 18 or 19 years old. I had to drop out of high school for a couple years. Doctors would tell me, 'it's in my head' and I had to get my gallbladder out." To this day, Ms. Boyer often is "unable to eat due to severe nausea," and "is lucky if I can eat one meal per day."

In addition to the brain tumor, Ms. Boyer has Ehlers-Danlos syndrome, which affects connective tissues within the body that support skin, tendons, ligaments, blood vessels, internal organs and bones. She has mast cell activation syndrome (MCAS), which means she has repeated episodes with symptoms of anaphylaxis: hives, swelling, low blood pressure, difficulty breathing. She deals with postural orthostatic tachycardia syndrome (POTS), which means she can suffer an excessively reduced volume of blood returning to her heart after standing up from a lying down position.

One of her biggest daily challenges is narcolepsy with cataplexy, which she was diagnosed as having in 2017. But she's experienced symptoms of it since childhood. Narcolepsy is nothing like the parody depictions seen on TV where a person falls asleep and awakens at random with no other symptoms. Ms. Boyer says narcolepsy is "probably one of the worst conditions I've had in my life and it's only gotten worse since the tumor."

It means she can go directly into REM sleep while remaining awake, disoriented in a trancelike state. She says this is "probably why it's so easy to hallucinate."

"I ran into traffic a couple times (during narcoleptic episodes) in college because I didn't know where I was," she said.

The co-occurring cataplexy means when she experiences high emotions, parts of her body can paralyze.

"It can start with eyelids, then my neck, then be on the floor after that," she said. "Not knowing what stage it's going to be in when you're in public is very scary. (Brandon and I) always have to be near each other in a store."

"I can't be in, like, a waiting room by myself and I can hallucinate," Ms. Boyer said. "I used to be very independent before my conditions started getting worse."

On top of her hefty academic career, she's also an artist. She's working on illustrating a children's book for a local author. While making art, or being home alone in general, she has to keep a timer on her phone that reminds her to look up from what she's doing every couple of minutes. If she doesn't do that, she can forget where she is and slip into a narcoleptic state.

"Many people have witnessed my hallucinations, which has led to me being afraid to go out in public," Ms. Boyer said. "I now lock myself in my apartment all day when I'm home alone."

Because her body has trouble breaking down what she eats, many medications have no effect on her. She's tried prescription stimulants to combat narcolepsy like Adderall, Ritalin and dextroamphetamine. They pass through her system with no effect. She's been given morphine for pain, which also does nothing.

Her chronic migraines started when she was in middle school, and they'd last up to a few weeks. She says they were so severe she could have had a stroke. To combat that, she was given nerve blocker injections directly into the back of her head. Since her body is highly resistant to medications, they relieved some of the symptoms in the short term, but were overall ineffective. She said the migraines have since increased in frequency and duration.

"Being constantly exhausted and unable to properly sleep means my brain fog is getting worse, and it's hard to function," Ms. Boyer said.

In September 2021, the 17-month migraine she still suffers from started. Alongside that, Ms. Boyer started experiencing seizures that can happen multiple times in one day. She now also has "a fever, on and off every few hours, for several months now."

In December 2022, she went in for an MRI to check for a cerebrospinal fluid (CSF) leak, which was a possible explanation for her chronic migraines. Instead, the MRI showed a brain tumor.

"My doctor believes it's putting pressure on important structures and nerves, which would explain why my symptoms have increased in severity so quickly," she said. "My doctor believes the tumor is putting pressure on those specialized nerves, the nerves that connect the eyes, teeth and back of the throat."

"As scary as the brain tumor discovery is, it's also a relief. A doctor has said, 'there's something,'" Mr. Wright said.

"The doctors started taking me more seriously," Ms. Boyer said. "For a year and a half, I told them my migraines won't stop. They said, 'take Advil or Tylenol.'"

She still doesn't know much about the tumor, including its size, how long it's been there, or whether it's benign or malignant. That's because her doctor left the area shortly after discovering the tumor. She still hasn't been able to start seeing a new doctor about it.

"It was kind of unfortunate with the timing ... my doctor calls up and said, 'I'm leaving the area and you won't be able to see (a new doctor) for two months,'" she said. Ms. Boyer has found a physical therapist who can at least help her with Ehlers-Danlos syndrome, which affects her body's connective tissues.

In the meantime, Ms. Boyer and Mr. Wright are trying to live life as normally as they can. He supports both of them by working two jobs: one as a teacher aide in a classroom for children with disabilities at Potsdam Central School. He works a second job as a respite worker with Ms. Boyer's brother, a 13-year-old with autism who is non-verbal.

"We trust him and we know him, so it's nice to have someone there," Ms. Boyer said. We're trained through work to communicate with someone who has disabilities."

"She's the hard worker. She's the ambitious go-getter. I'm the homebody who is a little anxious about meeting people and going places. She's been the one who's pushed me to learn more and grow and do stuff," Mr. Wright said. "Ironically, she's the one that's home and I'm the one that's out working. It would be funny if it weren't so sad. The tables have turned."

The couple used to work together as teacher aides in the same classroom at Potsdam Central, but Ms. Boyer had to resign due to her worsening chronic health problems. She also had to take a medical leave from Clarkson. It started out being a year, and it's been extended.

"My professors are very understanding. I still keep in contact with them and they help me any way they can," she said. "It was hard to them to see me experience these conditions firsthand. They'd find me unconscious somewhere on campus or see my hallucinations through class. They know how serious it was."

Ms. Boyer and the aptly named Mr. Wright were friends for a few years before they started dating. She was into his YouTube channel where he reviews movies, called Wright at the Movies. She is a cosplayer, meaning she makes and wears costumes that are replicas from fandoms like "Star Wars" or anime.

Although they can't make it to conventions that draw cosplayers, they're still able to occasionally indulge a shared passion: seeing movies in a theater.

Recently, they took a chance together and traveled to Syracuse to see "Avatar: The Way of Water" in 4DX, which is meant to enhance the experience with things like moving seats and environmental effects like wind, water and smells. William Castle would approve.

"We had a lot of fun and it was actually a fun time," Mr. Wright said.

"It was very exciting. We hadn't been out of the apartment besides going to docs' offices and Walmart," Ms. Boyer said.

Usually, they take in films at the Roxy Theater in Potsdam on Main Street. That's because it's close to their home in the Arlington apartments on nearby Market Street. If Ms. Boyer has a hallucinogenic episode, a migraine or other issue while at the Roxy, they can quickly leave.

"I can ask, 'Hey do you need to tap out?' and we walk upstairs and it's not the end of the world," Mr. Wright said.

They have future ambitions together. They've converted a spare room in their apartment for a work space. Ms. Boyer hopes to use it to start an online business selling office supplies. Mr. Wright wants to eventually use it as a studio to do more frequent reviews for Wright at the Movies.

While they wait for something to turn in their favor, there is a GoFundMe page at wdt.me/e7XzZa to try to raise money to help with their mounting medical bills and expensive student loan payments. As of Friday, it's raised $3,280 toward a $20,000 goal.

The couple for now is staying optimistic and is hoping to find a physician who may be able to help. They're encouraging any physicians who think they can help Ms. Boyer to reach out by email at hboyer811@gmail.com.

"Any doctors or specialists reading that can help at all, please message," Mr. Wright said. "I believe in her, I believe in the message: She will get better and get her doctors and we'll be able to fix this."