Flipping through the pages of the leather-bound journal, Janna Odenthal tracked the decline of her husband's once-elegant handwriting.
"Rough time, hate my current time,” was scrawled on a half-empty page dated December 8th, 2019 — the final entry.
Eloquent paragraphs faded to short sentences as the brain tumor began to eat away at Kurt Odenthal's abilities. Then on March 26, 2020, Kurt died at age 55, just 17 months after being diagnosed with Glioblastoma.
“Everything was so fast,” Odenthal, of Chesterton, recalled. “I never, ever dreamed I would be a widow at this age.”
Unfortunately, the Odenthal's story is a familiar one for many Region families. Between 1999 and 2020, cancer claimed 36,618 lives in Lake, Porter and LaPorte counties, a Times analysis of Centers for Disease Control and Prevention data show.
Nationally, 187.4 out of every 100,000 people in the U.S. died from cancer from 1999-2020, making cancer the second leading cause of death behind heart disease. While cancer is also second to heart disease in the Region, Northwest Indiana surpassed the national rate with 218.9 out of every 100,000 Region residents dying of cancer over those 22 years.
However in 2019, Indiana's age-adjusted rate of new cancer cases was actually lower than the national rate, with 410 per 100,000 compared to 439.
Indiana's high smoking rates and other lifestyle choices may contribute to the Region's high cancer mortality rate, but when a patient is diagnosed also has a huge impact on health outcomes.
The sooner, the better
By the time Debbi Hines' and Kelli Stowers' older sister Evyonne, "Vonnie," Porch received a diagnosis, the cancer had already taken over her body.
Porch, of Valparaiso, had been feeling sick and losing weight for about six months. In March 2014, after a few doctor's visits that yielded nothing, Hines took her sister to the hospital and insisted she receive comprehensive testing.
"The doctor was just kind of just blowing it off. … I said no, I want her admitted to the hospital today," Hines recalled. "The next day she had testing done and they found out that she had lung cancer, and then they did another test and it came back that it had spread to her liver, and then she had another test done and they told us it was in her bone and her brain."
Over the next few months, Hines and Stowers, both of Valparaiso, watched as their maternal older sister, who once loved traveling the Midwest and taking her grandkids to the fair, grew weaker and weaker.
Though Stowers said it "felt like a long, drawn-out process," her sister died less than a year later in January 2015 at age 56.
“She wasn’t the first person in our family to get cancer, so we kind of expected that somebody would get it. ... We just didn’t know who it was going to be,” Stowers said, explaining her father had oral cancer and her aunt had brain cancer. “If she (Porch) had been diagnosed sooner, then there may have been a different outcome.”
When people are busy with their day-to-day lives, it can be easy to ignore small symptoms or put off doctors visits.
Janna Odenthal lost her husband Kurt to brain cancer
When her husband first started forgetting things and misspeaking, Odenthal didn't think anything of it. Odenthal said Kurt, a former youth pastor, stayed active and sharp by hiking, writing and watching Star Trek with their son Seth. But in the fall and summer of 2018, he started getting horrible headaches, then he started jumbling his words.
"He would make up a word and then keep talking," Odenthal recalled. “This is a man that spoke in front of congregations, and now he can’t even say the alphabet.”
Doctors initially put Kurt on high blood pressure medication. When he finally got an MRI, they found an aggressive brain tumor in the speech center of his brain.
“Declare bankruptcy if you have to do it (get a screening). But, just do it," Odenthal urged.
Choosing between needed treatment and bankruptcy is a decision far too many Hoosiers are faced with. Though there are often a variety of factors that deter people from getting tested, a 2021-22 Indiana Cancer Control Plan determined poverty is the largest barrier to care.
According to the CDC's Behavioral Risk Factor Surveillance System, in 2017 higher education and income levels were correlated with the likelihood of getting regular Pap tests, mammograms and colorectal cancer screenings.
Insurance issues, lack of transportation and even language barriers can dissuade people from going to the doctor, explained Marie Macke, the executive director of Oncology and Behavioral Health Services for Community Healthcare System.
"Screening is something that, even for somebody who has resources, takes a lot to remember to actually do it. The fear of what could be found prevents people as well," Macke said. “But it is better to know upfront because we know that cancer is better treated the sooner you find it."
Community Healthcare System hopes to remove some barriers by hosting events like an upcoming Hispanic Heritage Breast Cancer Awareness screening mammography event Oct. 15 at St. Catherine Hospital. For more information, call 219-392-7321.
Navigating the diagnosis
When her husband was diagnosed, Odenthal had to stop working. She got a crash course on the complexities of the medical system, filling medical filing cabinets with stacks of medical documents.
Hines and Stowers shared their sister's medical care. Stowers began working the late shift at a local grocery store so she could be with her ailing sibling during the day, and Hines tackled most of the administrative tasks — which included making funeral arrangements.
"When she was first diagnosed she said, 'I want to plan my funeral,'" Hines said. "That was one of the hardest things I’ve ever had to do.”
The complexities of the health care system paired with the fear of a chronic illness can make the entire process feel "overwhelming," Macke said. That is why Community Healthcare System has a team of Health Navigators that work with patients throughout the care journey.
"When you are told that you have a positive cancer tumor, your whole world stops," Macke said. "There are a lot of pieces to connect, so it is good to have somebody who can see the larger picture."
The navigators operate as a kind of "concierge service to the patients," educating them on their diagnosis, connecting them with financial resources, scheduling appointments and just generally "holding their hand through the process" Macke said.
Community Healthcare System currently has navigators dedicated to lung and breast cancer and is preparing to hire one dedicated to gastrointestinal cancer. Macke said that eventually, Community would like to offer navigators for all types of cancers. Its Cancer Resource Centre, located in Munster, also offers support for patients and families. The center usually hosts 200 to 300 people a month at a variety of support group meetings, yoga classes, educational events and more throughout Northwest Indiana.
The same behaviors that help prevent cancer can help patients stay healthy once they have been diagnosed, Macke said. While many people know there is a direct connection between smoking and cancer, inactivity and unhealthy diet are also associated with the illness.
To truly combat cancer, Region residents need to maintain their day-to-day health and stay up-to-date on screenings and primary care visits, Macke said.
Stowers said her sister's death made her hold the people she loves "closer." She has had multiple MRIs of her own brain and she is always reminding Hines to go to get regular checkups.
“It changes you when somebody you love that much dies."