Not many people can say they’ve diagnosed themselves with a brain tumor, but that’s just what 19-year-old Bakersfield College student Bethany Elliott did.
Elliott hadn’t been feeling well for quite a while and was frustrated that doctors wrote it off as nothing.
She decided to take her health into her own hands and did her own research.
“I did research online after school since sophomore year of high school…and all my research led me to believe I had a brain tumor,” said Elliott, now in her sophomore year of college. “I had gotten to a point this past summer where I knew I had to just figure it out because nobody else was going to do it for me.”
She then went out of town to see a doctor that would take her seriously.
“I took my research in and told my doctor, ‘this is what I think I have. I really think I need an MRI,’” she said.
After what she says was lots of begging, the doctor agreed. She had her MRI on the Friday before the Labor Day weekend, which meant the doctor’s office was closed when the results were available. However, the medical records office was open and Elliott didn’t want to wait.
“I go down to medical records and I get the report myself and I read that I have a brain tumor,” she said. “So I was right. I was freaking right and I figured it out myself.”
Elliott was frustrated that 10 different doctors ignored her symptoms, when in reality they revealed a lot about the type of tumor she has, which is called a craniopharyngioma.
“They’d been doing random blood tests and checking my hormones, and a few of them would be off, but they never really fell under any pattern so the doctors would write it off,” she said. “Turns out, my tumor is squishing my pituitary gland and that’s like all my hormones in my whole body.”
According to the U.S National Library of Medicine, a craniopharyngioma is a rare benign tumor that develops at the base of the brain near the pituitary gland. It causes increased pressure on the brain, hormone imbalance, and can damage the optic nerve, leading to vision problems.
Elliott was able to seek treatment at St. Jude Children’s Research Hospital despite their age limit of 18.
“Because the tumor I have is one in a million, literally, they accept up to age 21 and I can be in the research study,” she said.
The treatment includes using proton radiation focused directly on the tumor, which Elliott described as a feeling of butterflies in her skull. It will take two years to see the results of the treatment.
“I have an appointment at St. Jude every three months this year, and then every six months for a few years, and then every year for the rest of my life.”
She said the experience would only help her in her future endeavors.
“I’ve wanted to be a pediatric oncology nurse for a few years now and it looks like I got a first-hand experience in that. I really just think it’ll make me a better nurse someday. From this experience I know now that I want to work at St. Jude and that’s something good that’s come out of it.
“I never thought I’d go there, of course, and I never knew anyone who was a patient. It was a distant world to me until now. Now, to everyone I know, it’s real to them too.”
Elliott has gotten back to school after taking a semester off for treatment and now feels she can get back to some sort of normalcy.
“I feel like I can move on with my life. There’s not this thing that nobody knows about, that’s my job to figure out.”
Elliott said only about 30 cases of this type of tumor has been documented before and she has taken a more positive perspective than most in her situation.
“I’ve moved passed it. I’m not sitting around like, ‘why me?’ If you get caught up in that you can’t move forward. I just look on the bright side.”
Though Elliott admits it may sound strange, she’s almost grateful that she has this incredibly rare tumor and not someone else because she had the right tools to figure it all out.
“I used to go to the [Kern Medical Center] library and look in their research. I have access to the BC online stuff and they have medical journals on there. That’s what I used to look at. What about the people who don’t have that? I wouldn’t want this to happen to anyone else. I’m glad that I guess I’m strong enough to handle it.”
Elliott has used this perspective to help give back to the community that helped her out by making special glass beads and blankets that represent her time with them.
“When I was getting radiation I had a blanket that we made there and I could take it into radiation every day, so it got just as much [radiation] as I did.”
The blanket was decorated by fellow patients and their parents with notes and hand-drawn pictures. Elliott now makes these blankets with the help of people in her community to send back to the children at the treatment center.
“It meant a lot to me because that’s the only thing that stays constant in radiation. Therapists change. Doctors, you don’t see them all the time.The time of day you get radiation changes everyday,” she said. “It’s really like you’re living on the edge, but you can take the same blanket with you every single day. So if it was that big of a deal for me, then I’m sure kids see it the same way.”
She also described how patients receive beads for every type of treatment they receive, but they had yet to have a proton radiation treatment bead, so she created one herself to share with others.
“It’s the only one that glows, so it’s so awesome. I donate them to the kids at St. Jude and the kids at the proton center where I got treatment.”
Elliott said she’s glad to be leaving a lasting impression on the people she’s shared her story with.
“I’m somewhat grateful that I know a lot of people, and now each and every one of them know, and they stop to smell the flowers and they’re grateful.”