Amie here. Before we wrap up our series on cancer in Iowa, I wanted to make sure we heard from a group of folks we don’t normally hear from: The caregivers.

When someone is diagnosed with cancer, it’s natural for us to draw our attention to them. But I now think about a friend of mine who is battling breast cancer, who has said many times she wants friends not to forget her partner, who’s going through everything with her.

“Caregivers go through anxiety,” she recently wrote on social media. “It’s okay to ask how the person going through the health crisis is doing, but don’t forget to ask how their caregivers are doing, too.”

And there are a lot of caregivers these days in Iowa who are fighting for their loved ones as well as for more support from the health care system and the government.

Are you a caregiver? What do you think our elected officials should know about caregivers (and how should they help)? Reply and tell me.

(And read our first batch of stories here, which focused on those living with cancer.)

Did someone forward this email to you? Subscribe to the rest of our Cancer in Iowa series here, and share your cancer story with us here.

Brittney Stepanek and Jenni Winterhof of Cedar Rapids appear in a video recorded by Iowa Starting Line. (Amie Rivers/Iowa Starting Line)

By Amie Rivers

Brittney Stepanek and Jenni Winterhof both live in Cedar Rapids. But they didn’t meet until both of their husbands were diagnosed with glioblastoma, a deadly form of brain cancer.

“We’re like sisters by cancer,” Stepanek said when I called her up and saw Winterhof on the call with her. “We fuel each other’s fire.”

The two have similar stories: Both have young children who go to the same elementary school. Both were thrust into an unexpected fight against a cancer with long odds. And both wanted someone who understood that.

“ We met and it was just like, we just instantly bonded,” Winterhof said. “ We very quickly were meeting, like, every three weeks or so for coffee dates.”

“ Just to check in and bond,” Stepanek added.

 ”Talk to each other, talk through options, see how we’re feeling, have that great support,” Winterhof finishes. “It was sort of heaven sent.”

When they both lost their husbands in 2023, they started a nonprofit together—both are passionate about continuing to raise awareness and money for brain cancer research.

And they’re continuing to fight for other Iowans. Winterhof has spoken to state Sen. Jack Whitver, who is also battling brain cancer, at their daughters’ volleyball tournament. (Whitver recently announced he was retiring from the Iowa Legislature.)

“I’d like to see some real legislation put through, and quit wasting our time with all this crap that you’re undoing from previous years,” Winterhof said. “Let’s change the narrative of Iowa being the worst place on earth to live.”

“Funding is the obvious one that we need; we need investment, right?” Stepanek added. “But the other part too is like, we don’t have the healthcare expertise in Iowa to care for the existing patients now, let alone for the incoming. So for the second-highest state in the nation with rising cancer rates, we’re not secured to take care of these people—not effectively. And they’re gonna go outside the state to get treatment.”

And they know these folks personally, like a 25-year-old Ames woman who was diagnosed with brain cancer.

“ She’s beautiful and she’s thriving in life and just got married, and she’s battling brain cancer, and she has her whole life in front of her,” Winterhof said. “My goal now is to fight for you and to give you this community and to show you that there are people out there who are—we’re gonna cure this. We’re not giving up. 

“And, yeah, my loved one is gone, but the fight continues until my dying breath,” she added. “His fight is now my fight, and we’re not gonna stop.”

Steve and Diane Hamilton of Storm Lake. (Courtesy Molly Hamilton)

Ignoring rural health care puts the onus on families

Molly Hamilton grew up as an only child boating and water skiing in Storm Lake with her parents, Diane and Steve.

But being the only child made adulthood especially hard for Hamilton as both of her parents faced cancer.

Her dad was diagnosed with prostate cancer in 2002, when Hamilton was a freshman in college. Two decades later, her mom learned she had metastatic fallopian tube cancer. 

Both are still living. But the resulting medical care hasn’t been easy, particularly for Diane: She had been living at the family’s Storm Lake home while Molly and Steve worked together at a law firm in Des Moines, where an oncologist is “not there frequently,” Hamilton said.

If her mom wasn’t doing well between appointments, she’d need to drive to Sioux City, meaning Molly would have to find her a driver or make the trip to get her from Des Moines—about a two-and-a-half-hour drive.

“So we kind of just decided to bring her down here to Des Moines, and she moved in with me,” joining Steve and Hamilton’s four dogs, she said.

It wasn’t easy: Besides shuffling Diane to Iowa City for care between 2022 and 2023, Steve had a TIA or “mini-stroke” during that time, and one of her dogs was hospitalized for diabetes. She believes the stress of everything caused the end of a relationship, too.

“ It was very chaotic,” she said, comparing it to keeping plates spinning. “That time was just like, ‘OK, just get the next thing done.’”

She wants legislators to address Iowa’s crumbling rural health care system. With upcoming cuts to Medicaid, she worries caregivers like her will face an even heavier burden.

“ I think about how fragmented the medical care system is and how difficult it will be, especially when this affects the individuals in rural areas, trying to get providers out into those areas so that people have access to care and continue to have support,” Hamilton said. “Otherwise, it’s so, so difficult.”

Legislators, she said, need to act on the cancer crisis to protect rural communities and family farms across Iowa, “so that a diagnosis isn’t complete devastation and an end to the business.”

Shannon Huey of Waterloo. (Amie Rivers/Iowa Starting Line)

The lung screener who wonders about other causes

As a lung cancer screening coordinator registered nurse for MercyOne in Waterloo, Shannon Huey focuses on older current and former tobacco users.

The job is twofold, she said: “ Getting the awareness out to the public so that we’re getting more patients coming in and being screened, [and] catching cancer early or getting cancer treated quicker if there is detection.”

Those eligible are between the ages of 50 and 80 (or 50 to 77 for those on Medicare) who have smoked at least one pack of cigarettes per day for 20 years.

“It doesn’t include vaping, it doesn’t include radon testing,” she said, though she hopes those factors are tested for someday.

Huey, of Waterloo, has her own family history of cancer: Her son was diagnosed with thyroid cancer at age 23. Her two sons-in-law were diagnosed in their 20s with testicular and melanoma cancers. Her mother and one grandmother had breast cancer. Her other grandmother developed liver cancer.

That brought her out to a cancer listening session at the Waterloo Public Library in August.

“My family and everyone here today has been touched by cancer; what’s causing it? Is it environmental factors?” Huey wondered. “I’m glad that we’re moving past just the hereditary and the things that you can curb or you can make choices for. … We’re finally seeing and focusing on the other factors out there that are causing this.”

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