Pancreatic cancer battle: To give her husband a chance, this Wilmington woman is all business

By early morning, Michelle Dewey has already fed her birds and Persian cats, made a healthy breakfast and lunch and given her husband pills they hope will kill the cancerous tumors in his body.  

While Casey Grabowski drinks his green juice, Dewey goes into her makeshift studio in her Wilmington house, where she takes an artsy pic on her iPhone for her vintage store's Instagram account. 

When she's at her store in Philadelphia in the afternoon, Dewey texts Grabowski every hour, asking about his bowels and pain level. If he doesn't respond within an hour, she sends a family member to the house to check if he's breathing. 

For the past 15 months, Dewey has served as Grabowski's caregiver as the 41-year-old battles Stage IV pancreatic cancer. Yet she's not your grandmother's caregiver. To Dewey, the qualities of a good caregiver are similar to those of a good businesswoman.

They both require hustle, attention to detail and a never-ending focus on finances. 

She's had to sell doctors and insurers on Grabowski being the right patient for a selective clinical trial, manage a tight budget and organize charity events with the hopes that donations will help cover mounting medical bills — all while running her own vintage clothing shop, where she has no employees.

“I’m a Type A control person, so for me, I’ve written my own code for being a caretaker," Dewey said. "A lot of times people say, ‘Well the caretaker needs to take care of themselves.’ I don’t actually subscribe to that. I’m the polar opposite. For me, my role is always taking care of him.”

"I know it's not the time or place to be emotional," Dewey added. "I have a job to keep my husband alive."

For the past 20 years together, Dewey and Grabowski mostly maintained busy and independent lives. By day, he was a civil engineer and by night he worked as a DJ and musician. Before owning her store, she was a car saleswoman who had a love for finding vintage clothes.

In April 2017, Grabowski was diagnosed with pancreatic cancer — an aggressive disease that affects mostly patients over the age of 65. Grabowski, who founded Philly Zine Fest, was in the prime of his life.

The diagnosis pushed Dewey into the big pool of Delaware residents who act as caregivers. According to a 2015 state report, more than 202,000 people at any given time during the year provide an estimated 132 million hours of care for a family member, worth about $1.56 billion. That number of people is more than one-fifth of the state's population.

Within hours of the news that Grabowski had cancer, Dewey — who describes herself as a tad neurotic — was reaching out to hospitals. Since then, she has read dozens of medical journal articles about pancreatic cancer, can name and describe the different forms of chemotherapy and has read every page of her husband's insurance plan.

Sean Hebbel, a licensed social worker and program director for Cancer Support Community Delaware, said good caregivers are those who are assertive and clearly communicate on behalf of their loved ones.

Not everyone has those skills, he said. Hebbel has found those who channel their inner businesswoman or man can have an advantage. 

"As long as you have those skills, or can get in touch with those skills," he said, "then that's going to help put you on a better step to help your partner who is ill."

Dewey said she likely wouldn't be this aggressive if she were caring for an older parent. Giving up on her young husband is not an option, she said. 

For 12 years, Dewey was a BMW saleswoman. She said she was one of the most aggressive at her dealership.

Grabowski's illness has turned into another sales job for Dewey. She has to get doctors on board.

She recently got Grabowski accepted for a Johns Hopkins trial that focuses on immunotherapy, after previously being denied for other clinical trials. When the couple first met with Hopkins doctors, Dewey prepared for it like she was walking into a job interview. 

Dewey tells doctors Grabowski's story succinctly, almost like an elevator pitch, and details how he's been through 33 rounds of chemotherapy and what kind of medications he's been taking. She wants doctors to feel that Grabowski is the right person for them. 

"He just doesn't have the physical strength to put up the fight with these doctors," she said. "So I have to do that for him. He’s doing everything they ask him to do." 

When his insurer said they wouldn't cover the clinical trial, Dewey read through every page of the insurance plan. On the last page, she discovered, the plan said clinical trials are covered. She argued with the insurer until they agreed to cover it.

Grabowski said he and Dewey aren't like most couples. They didn't have a formal wedding and aren't the kind of people to hold hands in public. They demonstrate their love by being there for one another, he said. 

When Dewey wanted to pursue her passion of owning her own clothing shop, Grabowski supported her. And now she's supporting him.

"But this a totally different ballgame," he said. "I really think I would be dead if Michelle wasn’t here to help me. I’m eternally grateful for that."

The couple has mostly relied on Grabowski's Social Security disability check, since Dewey doesn't make much from her clothing shop. She started a GoFundMe account, named "Casey has F-ing Cancer," soon after his diagnosis.

The page has raised almost $75,000. The couple says it is the reason they've been able to financially stay afloat.

“It’s strange when you felt you did everything right, you had your finances in order," Dewey said, "well, stage 4 cancer in a young man completely resets everything.”

In the time Grabowski has been sick, Dewey has had to grow comfortable with accepting donations from friends and family. In the beginning, she was sending handwritten notes to everyone who donated. But she quickly realized that would be an impossible task.

She's applied for grants and has helped throw fundraisers to make sure there's money to pay for Grabowski's medication and clean diet. Dewey records every medical expense and keeps the hospital bills organized in a Mary Poppins-like bag.

It became helpful when the IRS asked to audit her last year since the couple wrote off so many medical expenses. 

Caregiving has taken a toll on Dewey: There are days when she's so busy she forgets to eat and she doesn't get much sleep since she often takes Grabowski's temperature several times throughout the night.

She isn't interested in getting a different job, because she needs the flexibility to care for her husband. Her vintage store's hours are determined by Grabowski's schedule.

"Nobody is going to die if they don't get a vintage dress," she said bluntly.

Some days, Dewey allows herself to cry and think scary thoughts when she's commuting to her store in South Philly. 

But when she gets out of her car, it's back to business.

Caregiving, according to Dewey

In the past year and a half, Michelle Dewey has learned a lot about what makes a good caregiver. Here's her advice for those who have found themselves in a similar position:

Tell people exactly what you need, even if that means money

Dewey has learned that she's had to be direct with family members and friends about how they can help. Often, she's found the best way they can help is by donating to the couple's GoFundMe or by dropping off dinner. 

It’s OK to say 'no'

Dewey sets boundaries for her friends and family, especially when they want to visit Grabowski. It's OK to say it's not a good time, Dewey said. When friends do come over, Dewey sometimes tells them they can only stay for one hour.

She doesn't want her husband to get too worn out and not have the energy for treatment the following day. 

Be strong with your convictions

In order for people to be good caregivers, they need to be advocates who know what they and their loved ones want, she said. Being strong in her convictions helped Dewey convince doctors Grabowski was right for a clinical trial and insurers that they should cover it. 

DELAWARE HEALTH

More families choose medical marijuana to help kids' severe conditions

Delaware hospitals' newest diagnosis: Human trafficking

Contact Meredith Newman at (302) 324-2386 or mnewman@delawareonline.com and on Twitter @MereNewman.