Diagnosed at 23, survivor shares her story for Brain Tumor Awareness Month

Photo by Sue Cook – Heather Kuepper was only 23 years old in 2011 when she was diagnosed with a brain tumor. The photo on the left was taken just hours after her surgery. On the right is her discharge from the hospital nine days later.

By Sue Cook, staff reporter

MEDINA – Three years have passed since Heather Kuepper was diagnosed with a Grade III malignant brain tumor (grade IV is the most severe). Doctors said her tumor was so big it was nearly blocking off the flow of cerebral spinal fluid and without an operation, it would continue to grow and would eventually kill her.

Before her diagnosis, Kuepper had experienced headaches, dizziness and numbness. She made an appointment with her primary-care doctor who then referred her to a neurologist in Rochester. The neurologist noticed that the movement of her left eye was jittery, while her right eye moved smoothly.

On June 17, 2011, Kuepper was scheduled for an MRI to rule out the possibility of multiple sclerosis.

“I never expected it to be anything more than that,” said Kuepper.

She was asked to have a seat while waiting for her results. She noticed many people who were also having MRIs were leaving faster than her. She assumed that perhaps other people were just there for quick follow-ups.

“They called me up and told me they were trying to get a hold of my primary-care doctor. I was waiting there for probably three or four hours. They finally got a hold of him and he pulled me into a private room. He told me, ‘I’m sorry. You have a brain tumor.’ At that point, I tuned out everything he was saying. I heard noise, but I couldn’t even focus on anything.”

Provided photo – Kuepper’s tumor, circled in red, was located in the posterior fossa. It was starting to grow on her brain stem.

Because of the size and location of the tumor, Kuepper’s first neurosurgeon referred her to Dr. Silberstein, a pediatric nuerosurgeon who had more expertise. Kuepper’s tumor was an ependymoma, which is a type of brain tumor rarely found in adults.

On July 6, Silberstein began the scheduled six-hour operation at Strong Hospital. The surgery would take 13 hours.

Kuepper woke up to find herself intubated with a breathing tube down her throat because she would be unable to breathe on her own without it during recovery. She was in a room where four nurses provided 24-hour surveillance on her.

During her hospital stay, she also had to learn to eat, talk and walk again. She was put through physical, occupational and speech therapy. She was eventually moved to a regular hospital room with less intensive care.

Nine days after admission, Kuepper was released from the hospital. She had to take 30 pills a day. Kuepper also needed 33 radiation sessions over six and a half weeks. She continued another two to three weeks of other therapy sessions to increase her functionality.

‘I’d rather look silly and stupid, than be dead.’ – Heather Kuepper

Kuepper does have some after-effects from her experience. She has anxiety problems that her doctor said can be post-traumatic stress, which is common in people who have a similar situation, because of how intense and terrifying her experience was. She also has felt survivor’s guilt, but tries to focus on how lucky and blessed she is.

“I do have issues with memory. I had just enrolled in college within weeks of finding out that I had a tumor, so I had to pause while I had the surgery and was trying to recover,” she said. “Everything I learned in that time, I don’t remember and that has caused a lot of depression issues for me, but I’m getting a lot better from that now.”

Today, Kuepper works for CRFS in Albion. She sometimes struggles with retaining new information.

“At work, I have to carry a packet of information with me for about two months before I can do it on my own,” she said.

Provided photo – Kuepper had 13 stitches to seal the nearly 5-inch incision running up the back of her neck. This photo was taken after she had begun to heal.

Kuepper explained that there are 120 different kinds of brain tumors. It is the most common form of solid tumor for children under age 15. Brain tumors are the second-leading cause of cancer-related deaths in children under age 20 (behind leukemia). They are the second-leading cause of cancer-related death in males and the fifth-leading for females between the ages of 20-39.

She advises that people should take their symptoms seriously for any illness or health problem.

“I would definitely say if you think you’re being silly getting worried about symptoms, don’t,” she said. “Go to the doctor. I had put off symptoms for a couple weeks, but when they kept happening, something in me just kind of told me to go to the doctor and see what it was. I never in a million years would have thought that I’d have brain surgery and me going through radiation. My motto now: I’d rather look silly and stupid, than be dead.”

She is also going to run a half marathon on May 25 in Buffalo. She is using the run to raise money for brain-cancer research through Race Toward a Cure during May, which is Brain Tumor Awareness Month.

For those who would like to donate to her efforts, you can see her fundraising page by clicking here.