Before Casey Grabowski's stomach troubles started, he had mastered juggling an unlikely mix of work and play. He was an engineer at Tetra Tech in Newark, Del., but come nightfall, it was nothing for him to race up to Philadelphia to run lighting or sound for a concert, perform with a band, or throw and DJ his own party.

One morning last April, Grabowski, founder of Philly Zine Fest, got his diagnosis. Michelle Dewey, his partner, suspected acid reflux, not the stage IV pancreatic cancer that he's been treated for since.  Dewey, who owns Mesh, a vintage clothing shop on East Passyunk Avenue in South Philadelphia, told him that morning to take a leave from his day job, and he did.

She remembers giving herself about an hour to let her emotions take over. Then she started calling hospitals.

Today, the new normal in the Dewey-Grabowski household in North Wilmington, Del.,  has required another form of dexterity: managing his many treatments, and gaining crowdfunding — pooling donations through a website — in order to afford them.

"It was not premeditated," Dewey said. "I had no expectation when I started the GoFundMe of getting much response. One day at 2 a.m., Casey had been throwing up all night. And I just thought, 'I need to do something because I'm not doing enough.' And thank God, because it's what we live off of."

Medical crowdfunding has risen in popularity, but often lacks success. A 2017 study published in Social Science and Medicine analyzed 200 GoFundMe medical campaigns: 90 percent of campaigns didn't hit their fund-raising goals, and, on average, fund-raisers pulled in roughly $3,000.

Grabowski, 41, kept his work-based Aetna plan through COBRA — which means paying higher premiums for desperately needed coverage — and his crowdfunding page has surpassed the $50,000 mark. But it's not enough to carry the hulking weight of his health-care costs. A recent research paper defined an underinsured cancer patient as someone who pays more than 10 percent of income on treatment. While Grabowski receives $2,200 monthly from Social Security through his disability status, his monthly bills far outweigh this income.

Without the GoFundMe page, Dewey says, "we would be homeless and uninsured."

Casey Grabowski and his wife, Michelle Dewey, in their Wilmington home.
Avi Steinhardt
Casey Grabowski and his wife, Michelle Dewey, in their Wilmington home.

Dewey shared a bulleted list of expenses: His insurance costs the now-married couple $1,200 a month. They spent an additional $1,000 a month on such alternative therapies as vitamin C and alpha-lipoic infusions. Medical marijuana is typically $200 to $300 each month. Since his diagnosis last spring, alternative treatments and medical marijuana have cost roughly $17,500 altogether.

>> Read more: What physician groups are doing to try to address the "financial toxicity" of health care.

But the largest costs are traditional medical treatments. The bills that they've seen fall somewhere in the six-figure range in total. Dewey estimates they've paid more than $40,000 out of pocket for medical care and prescriptions. In February, a $25,000 bill arrived in the mail. The couple still aren't quite sure what it's for.

"They really didn't go into specifics," Dewey said of Grabowski's insurance plan. "They said, 'We are done paying on this bill.' And they left it to me and the hospital to work out."

The couple have spent nearly all of the GoFundMe donations, said Dewey, with only a few thousand dollars left. GoFundMe, which recently eliminated its 5 percent charge from personal campaigns, continues to charge processing fees, which amount to 30 cents plus 2.9 percent of the overall donation, before disbursing donations to organizers.

When new donations come in, Dewey gets an email alert. Sometimes they arrive at anxious moments, such as while standing in line waiting to fill prescriptions. "It's almost in real time helping me," she said.

Rising treatment costs and the impact

Gary Lyman, an oncologist who codirects the Seattle-based Hutchinson Institute for Cancer Outcomes Research, said cases such as Grabowski's are extraordinarily common.

"The advances in cancer treatment have led to more survivors," Lyman pointed out, "but the cost of doing that has risen astronomically." According to a 2013 Hutchinson study, having cancer makes patients 2½ times more likely to go bankrupt, with younger patients facing more acute risks.

"Far too many cancer patients are as ravaged by the financial impacts of the diseases as they are by the physical impacts of the diseases," Lyman said.

So thousands of patients and families are turning to crowdfunding to fill the gaps. Researchers note that this practice favors patients with more recognizable diseases as well as organizers who excel at marketing. Some scholars maintain that medical crowdfunding should not be viewed as a solution for the gaps in the American health care system — Gallup estimates that 12 percent of American adults were uninsured in the final quarter of 2017. Yet Dewey said financial administrators the couple has encountered at hospitals recommended they crowdfund.

According to NerdWallet, a financial literacy site, by 2016, $930 million of the $2 billion raised through GoFundMe from its start was for medical campaigns. GoFundMe officials dispute these numbers, but declined to share how much medical campaigns, which may encompass large-scale charity and research efforts, have taken in overall.

An underground figure

Grabowski founded the Philadelphia festival for small-circulation magazines in 2002. He had his own zine, called Trixine for a fictional, evil corporation that he invented. Grabowski picked the Rotunda for his festival.  Fellow event organizer Dre Grigoropol said Grabowski's thinking was ahead of the curve, as the Zine Fest is the longest-running one of its kind in the region.

Musically, he creates in genres from noise to techno to dream pop. Kedra Caroline, who played with Grabowski in the Morelings, describes him as someone who will listen to a bandmate share an idea, then find the perfect synthesizer to achieve that sound. Shari Wallin, who performs under the name Void Vision, calls him an equipment whiz who's helped musicians across the local scene.

Andrew Miller, formerly a booking agent for the Khyber and North Star Bar, thinks Grabowski's impact has been broader.

"He's not on a lot of people's maps, because he's more underground," said Miller. "The kid making weird electronic music in the basement in Baltimore might not know me, but they know Casey. He connected the dots in a different way than anyone else would have looked at it."

Casey Grabowski with his synthesizers and records.
Avi Steinhardt
Casey Grabowski with his synthesizers and records.

Grabowski recalls sensing the disease before he knew he was suffering from it. "I knew something was wrong with me. I was fighting terrible GI problems."

Constant pain accompanies both his cancer and his chemotherapy. He completed 12 rounds of chemo, which he described as "agonizing," at Cancer Treatment Centers of America in Philadelphia, but the results weren't what he'd hoped for. Now he is on a different chemo regimen in Baltimore, at Johns Hopkins Medicine. His tumors appear stable. Stage 4 means his cancer has spread to other organs, and is considered incurable, but still treatable.

Like many patients who've undergone chemo, he has neuropathy that numbs his hands and feet. His steps are unsteady, and his once sensitive fingers find fretboards and keyboards challenging.

Grabowski spends most of his time inside. He recently began podcasting, with an underground music series called Sonic Syrup. He didn't sleep much before cancer, but now he sleeps for long stretches. He's nixed junk food in favor of a healthy diet, but eating can be painful.

Dewey knows all too well that their debt is accumulating, but cannot face devising a plan to deal with it yet.

"I don't know," she said, taking a long pause. "I really don't know. If I look too far ahead, I'll get overwhelmed and lose sight. I have to take off my emotional-wife hat and make it work like a business."