MARYSVILLE — For Robin Sparks, 61, the battle began in 2021 when she noticed a hard lump on the side of her neck.
It turned out to be non-Hodgkins lymphoma.
Though diagnosis took weeks of testing and waiting around for appointments, Sparks trusted the health care system. She told herself if she were “on the brink of death” things would move fast.
But over and over again, the health care system let her down.
Now, she wants to help others navigate the labyrinth of cancer treatment.
That’s why she founded The C-Suite Center for Hope in Marysville last year. The organization supports cancer patients and their caregivers through treatment and beyond, helping remove barriers to care.
Sparks came up with the idea sitting in an infusion chair receiving chemotherapy.
Looking at other people receiving treatment, she thought, “I can’t believe this. It’s not just me. It’s you, too.”
Like other cancer patients, Sparks had to organize a time-sensitive chain of appointments to pursue treatment.
As she explains it, if she was getting chemo on a Thursday, she’d have to see her oncologist Wednesday to look over blood work. The blood that those appointments depended on had to be drawn 72 hours before the chemo — Monday in this scenario.
At the lab where Sparks got her blood drawn, “they never had the orders, never knew what they were doing,” she said, forcing Sparks to advocate for herself.
Every chemo cycle, Sparks had to “hope and pray” the blood work would get to her oncologist in time.
Twice, it didn’t. As a result, her chemo was delayed for two months.
There were other road blocks. Three months into chemo, she was supposed to get a CT scan to check the progress of the treatment, but her insurance company kept giving the hospital the wrong information. Without it, her doctors didn’t know whether chemo was working.
By the time they finally approved the correct scan, she’d already finished chemo treatment.
“It was just like everybody was dragging their heels,” she said.
She found out the treatment had worked last September. Though her cancer is incurable, it is now under control.
That was the same month she founded C-Suite, though she’d been helping people informally before then.
Both she and her husband are cancer patient navigators, certified through George Washington University. They help patients with any issue standing in the way of treatment, like transportation or affording treatment.
Sparks started by working with patients receiving services at the Salvation Army who were dealing with housing and food insecurity.
“Where you are in life does not mean you have to die from cancer,” she said.
Her husband sometimes accompanies men to the hospital if they’re nervous about the appointment. Sparks is willing to go with patients too, though women don’t usually ask, she said.
C-Suite’s support can continue after remission, too. Sparks knows firsthand surviving cancer doesn’t mean all problems go away.
She still has a persistent violent cough, a side effect from the chemo, that has continued for months with no signs of abating. Getting appointments with specialists to treat the cough has been difficult.
“I am with a patient for as long as they want the journey to last,” she said.
Caregivers, who gave up so much of their time to support a patient, may also struggle when their loved one is in remission. Sparks is there for them, too.
Sparks operates out of an office in the newly founded nonprofit hub in Jennings Park, run by the nonprofit LINC Northwest. C-Suite moved into the building at 6915 Armar Road in July — before that, Sparks ran the organization out of the back of her car.
The organization is appointment only.
Sparks is also a legislative ambassador for the American Cancer Society Cancer Action Network, testifying before lawmakers about issues the group is advocating for.
She spoke on behalf of one bill addressing prior authorization, a process in which patients have to wait for their insurance to approve health services before they receive them. The legislation requires insurance companies to respond to the requests within three days, or five days for non-electronic requests.
Gov. Jay Inslee signed it into law in May. That legislation would have prevented what Sparks went through when her CT scan was delayed for months.
She’s also advocated for a law requiring insurance companies to cover biomarker testing. This testing allowed her to determine what type of non-Hodgkins lymphoma she had. Figuring that out allowed her to pursue targeted treatment for her type of cancer.
The bill didn’t pass this year, but Sparks is hopeful it will next year.
“She probably plays one of the most challenging roles that we have,” said Audrey Miller-Garcia, a manager of grassroots organizing for the cancer society’s lobbying arm.
The help C-Suite provides for patients is crucial, Miller-Garcia said, noting resources in more rural areas of Snohomish County are limited.
Where you live is “one of the biggest determining factors of what kind of support and care you have access to,” she said. In Washington, “as soon as you start leaving the Seattle area, then you’re gonna see a steep decline in access to resources.”
The American Cancer Society pays for care navigators to work with patients in specific hospitals, but that was scaled back during the pandemic.
Often, Miller-Garcia said, patients get diagnosed but never end up starting treatment because they get stuck fighting with their insurance company or trying to figure out which appointments they’re supposed to go to.
Miller-Garcia said “Marysville would do well with 10 more” of Sparks.
For her part, Sparks is looking to the future, “when this center for hope kicks off and the world knows about it, they’re gonna say that Marysville is a center for hope.”
Correction: This story has been corrected to clarify that Robin Sparks is a volunteer with the American Cancer Society Cancer Action Network and Audrey Miller-Garcia works for the cancer society.