Tackling the complexities of multiple health problems
Spokane woman returns home to fight brain tumorJuly 30th, 2015
Hayley Olson spent much of her 20s living life around health care issues, but she thought she’d turned a corner nearly two years ago.
Olson, 29, had moved from Spokane to Eugene, Ore., in August 2013 to live with friends, after medication stabilized effects of a rare autoimmune disorder named granulomatosis with polyangitis, formerly called Wegener’s, that involves inflammation of blood vessels. She’d enrolled in college classes at the start of this year and worked part time as a nanny.
Only a month into school, though, she had seizures that sent her to an emergency room and led to another grave diagnosis this past January: a tumor and brain cancer.
“I had a brain tumor the size of a ping-pong ball removed from the right back of my brain,” says Olson, now living in Spokane with her mother, Pam Nichols.
Olson adds, “I felt I was finally getting a normal life back together, rather than this girl who is home sick. I’ve had Wegener’s for a while, but it’s been controlled by medication and treatment through my rheumatologist. I’m kind of just dealing now with this, and how I’m going to do what I can to enjoy life. I like art, drawing, coloring. I love to read. It really puts a bummer on your social life.”
After a neurosurgeon in Oregon removed 95 percent of the tumor, Olson decided to return to live with Nichols for support and to undergo radiation treatment and chemotherapy. She went in for radiation March 16 through April 27. A first round of chemotherapy on June 12 left her fatigued, yet she didn’t have much nausea, Nichols says. Olson is expected to finish at least four sessions of chemo treatments by the end of this year.
Nichols and Olson describe the challenges of navigating two different health issues alongside treatments, medications, and diet restrictions because of her chemotherapy regimen. Nichols says they’re also trying to understand Olson’s recent head pain and pseudo seizures, which are non-epileptic seizures thought to be caused by an overload to her body’s nervous system.
“It’s complicated,” Nichols adds. “There’s a lot going on with her health, so how do you narrow it down? Is it the chemo giving her the head pain? Do we know how to treat it? In theory, though, it’s working. The (remaining) tumor is shrinking. The neurosurgeon in Eugene was very pleased he could get out so much and it didn’t affect motor skills and sensation or feeling on her left side.”
Currently, in a wait-and-see pattern, the Wegener’s disorder isn’t being treated with medication, she adds.
“There’s a lot of coordination of medications,” says Nichols, who also is juggling full-time work while helping her daughter. “For the Wegener’s right now, as far as we know, it’s ok; it’s not active. They didn’t want her on other medication because of interference potentially with her cancer treatment.”
Both mom and daughter say they haven’t been told of any connection between Olson’s dual health care issues. They know much about the first condition, after about seven years of dealing with it.
The National Institutes of Health says Wegener’s, or granulomatosis with polyangitis, is a disease in which blood vessels and other tissues become inflamed. This inflammation limits blood flow to important organs. The exact cause is unknown, but it’s considered an autoimmune disorder. Although it can involve any organ system, the disorder mainly affects the respiratory tract, such as in sinuses and lungs. The disorder affects men and women equally.
At age 22, Olson received the granulomatosis diagnosis after physicians discovered it in her upper respiratory system, specifically the right mastoid of her ear. Prior to that, she had reoccurring illnesses that seemed like colds and sinus infections as well as headaches. She saw ear, nose, and throat specialists, had tubes inserted, and ultimately had several surgeries.
“They did a biopsy of the tissue in my right ear that ultimately led to the diagnosis,” Olson says. “One doctor had a suspicion it could be this condition. My doctor (at Arthritis Northwest) told me I was one of the youngest patients ever diagnosed.”
For treatment, her doctor also wrestled with what would be the best choice of medication for a young female still in childbearing years, Nichols adds.
“Some of the treatment they’d given to older patients they would have used, but they can make you sterile,” she says. “That was unique because she’s a younger female.”
Nichols says the doctors were deciding how they were going to treat it. If Olson were an older woman past childbearing years, different, more standard therapies would be used.
A decision finally was made to use a medication named Rituxan in combination with Methotrexate, which is used to treat rheumatoid arthritis. Rituxan is given intravenously and decreases the number of B-cells that produce harmful antibodies by targeting those that have a specific marker on their cell surface.
“Rituxan helped me get Wegener’s under control,” says Olson.
For people with Wegener’s, harmful antibodies called autoantibodies are produced and attack healthy tissue and cells. Many people with the disorder test positive for a group of autoantibodies called ANCA, but Olson adds she eventually tested with negative results for ANCA. She was undergoing only a maintenance schedule of Rituxan treatments every six months, and Methotrexate was required only once a week taken as a pill.
She would have had another Rituxan treatment in June, but doctors aren’t concerned, Nichols says. She adds, “They just had those ANCA levels tested and it was showing the negative levels, which is good because I have no idea how they would have managed that all together.”
She says, “The doctors told us she couldn’t even start radiation until after the Methotrexate got out of her system. The last time she took Rituxan was in December, and now she can’t take it at all.”
In the meantime, Nichols is helping her daughter research ways to connect to people in the community for the days she feels strong enough. Although Olson says she limits her exposure to large groups because of a weakened immune system, she tries to go on a few fun excursions with Nichols and her mom’s boyfriend. She’d like to travel.
“My mom and her boyfriend Michael are wine aficionados, and I like to go out with them,” she says, “Sometimes, I’ll sit on my mom’s patio and read. I’m redoing my original bedroom when I have strength. I’d like, even before recovery, to look into online courses, and even classes through Corbin Art Center.”
Olson adds, “I don’t want to sit around; it’s not living.”