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Oligodendroglioma Survivor

Tiffany Kennard

Tiffany Kennard wanted to be a doctor. A biology major in college at age 22, she was on track, until she began to experience “speech glitches,” as she calls them.

“At Spring Break, my mom said I had to go to a doctor. She could tell something was wrong,” Tiffany says, explaining that on two occasions when she spoke all she heard was gobbledygook instead of words coming out of her mouth.

Diagnosis

Her doctor got Tiffany in for a CAT (computed tomography) scan the next day, then the following day she had an MRI (magnetic resonance imaging) where they discovered she had a brain tumor in her left frontal lobe – an oligodendroglioma, WHO grade II.

Tiffany didn’t return to school after spring break, but left the University of California San Diego, to return to her parent’s home in Gig Harbor, Wash. She had surgery with Dr. Daniel L. Silbergeld, a professor of neurological surgery at the University of Washington School of Medicine, an expert in functional brain mapping for language, movement, and sensation.

In April 2001, Tiffany had surgery to remove her brain tumor and have language mapping.  “Everyone has language in a different place," says Dr. Silbergeld. In general, people have language on the left side of their brains, but not always. Those with language on the left side of their brains can have some language on the left and some on the right. The problem is, if the tumor is near a language area, and because gliomas grow by invasion, like sand in the water, you’re taking brain with tumor cells in it.”

Dr. Silbergeld performs a couple of hundred brain tumor operations a year. “First, I think about whether the piece of brain containing the tumor is expendable, then, if I need to map the area to avoid hurting nearby or invaded functional brain. The first goal is to not hurt the patient. The second goal is to diagnose, and the third is to take out as much tumor as is safely possible.”

Tiffany’s surgery was performed while she was awake for part of the operation as Dr. Silbergeld needed to stimulate parts of the brain and have Tiffany name objects so he could pinpoint the area where her language center was. “Knowing where the critical function is and the tumor is we take out where the two don’t overlap,” Dr. Silbergeld says.
 
“It was confusing,” Tiffany says. “I was young and had my sights on my future. All of a sudden, my whole world changed and instantly I was fighting for my life.”

After her surgery and radiation, things looked stable and Tiffany returned to school, transferring from USCD to the University of Washington where she received her Bachelor of Science degree in Biology.

Recurrence & Treatment

“I had five years of being stable,” Tiffany says, who was one year into graduate school at the University of Puget Sound when her cancer came back. The cancer had been growing very slowly over the last few years.

“We always knew they didn’t get all of the tumor in 2001,” she says. “It was scary. I had essentially written it off. But then I got a message after a routine six-month MRI that I had an appointment at the neurosurgery clinic.”

This time Tiffany was seen by  Dr. Maciej M. Mrugala associate professor of neurology, neurological surgery and medicine who treats primary glial brain tumors at the University of Washington Medical Center.

“Tiffany was referred to me by Dr. Silbergeld," says Dr. Mrugala. "We reviewed her imaging and identified that indeed the tumor had gradually progressed over several years. We discussed different treatment options and settled on therapy with an alkylating oral agent with good blood-brain-barrier penetration – temozolomide. Tiffany took the medication for several years and we were happy to identify that the tumor responded well to treatment.”

This oral chemotherapy was standard treatment for her recurrence. Tiffany took that drug for two years and was able to finish graduate school in occupational therapy.

“I worked for a year in patient rehabilitation. It was nice to be on the other side. I had a lot of empathy for my patients,” Tiffany says.

Inoperable Recurrence

In 2010, Tiffany’s tumor came back yet again. After her MRI her medical team decided surgery was required to remove the tumor. Two weeks later, Tiffany returned to UW Medical Center for surgery, only to find out in that morning’s MRI that her tumor had taken off in the past two weeks and now was all over her brain. It was inoperable.

“It had grown incredibly fast,” Tiffany says. “Dr. Mrugala started me on chemotherapy again right away, but this time with three drugs via IV (intravenous) instead of the oral drug. But it only worked for a little while.”

“Tiffany developed diffuse disease progression – meaning the tumor had spread throughout her nervous system, including brain, spinal cord, and cerebrospinal fluid (CSF). She required therapy with multiple agents, including drugs given directly into the CSF,” Dr. Mrugala says.

Treatment After Treatment

It seemed that Tiffany was signed up for every treatment in the book. Most recently, she had methotrexate, PCV (procarbazine, lomustine, vincristine), and two Gamma Knife treatments with Jason K. Rockhill, MD, PhD, a radiation oncologist who specializes in treating brain cancers.

In the summer of 2011, Tiffany received full brain and spine radiation.

“My cancer had metastasized to my spinal fluid,” Tiffany says. “Radiation took care of the lesions formed in my spinal cord, but there are still cancer cells in my cerebral spinal fluid.”

Side Effects

Tiffany has been through it all with a smile on her face, most of the time. But her body is “out of whack,” she says. “A girl can only handle shaving her head three times in 10 years!”  Mostly, she’s incredibly tired.

Tiffany started chemo again in late summer 2011. There are two spots that Dr. Mrugala is keeping a close watch on. He’s also changing her chemotherapy treatments as soon as there is evidence of a new growth. Treatment options become very limited at this point.

“I’m getting chemotherapy once a week and MRIs every four weeks,” Tiffany says. “The fatigue is so intense right now that I can only do one thing at a time. I’m on disability for now, too, because I don’t have the energy to perform the duties of an OT.

“It’s a hard place to be,” she says. “I’m single and it’s hard to compare myself to my friends who are now all married with kids. It’s funny how little things can make me feel better, a new pair of cute shoes, a manicure or a pedicure mean a lot these days.”

Grateful

Tiffany trusts her doctors at SCCA and UW Medicine and the treatments they’re giving her. “The doctors, nurses, and staff have been exceptional and very willing to listen and help me through the treatment process and the disease itself,” she says.

Thankful for her family and her strong faith: “I believe there is a purpose—and that helps me a lot. It helps me be more positive,” she says. This is not to say that she doesn’t have her times of fear and feeling low. “I do have moments where I don’t understand and am confused and down, but I know God is with me.”

Humor is huge in Tiffany’s life. It helps her get through the tearful days. “My family has kind of a weird sense of humor, but it has allowed us to intersperse laughter with the tears that this adventure has caused.”

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