ROCHESTER — Rafael Barbosa steered his Volvo SUV past the sign — "Mayo Clinic: Welcome" — and into a parking spot.
He'd rather not be coming here, where blood samples will be drawn from the port in his chest to see how the chemotherapy is working, but as a 42-year-old Iraq and Afghanistan veteran with a prognosis of two years to live, he figures the world's top-ranked hospital gives him a fighting chance. One more blessing amid his trials.
Barbosa plopped into a chair at the outpatient chemotherapy unit. Then he waited.
Cancer — even his aggressive colon cancer discovered at Stage IV last fall — is all about waiting. Waiting for drugs to drip into him. Waiting for body scans every three months to see if the surgeries and chemotherapy worked. Waiting to see how much time the Army captain and helicopter pilot has left. He believes the cancer was caused by burn pits in Iraq and Afghanistan and went unnoticed by doctors at Fort Benning for years. Will the cancer stay dormant long enough to see his 13-year-old son, Walker, enter high school? Statistics say about 1 in 5 live five or more years, long enough to see Walker graduate.
"Statistics don't work at an individual level," the perpetually optimistic Barbosa said, almost in prayer.
On an institutional level, he and his wife, Amanda, have been waiting for bigger things: For the military to admit wrongdoing, and for the federal government to pass legislation that may not help them but will help other military veterans facing similar situations. GOP senators initially blocked the legislation last week, incensing the Barbosas and other veteran advocates, before the Senate overwhelmingly passed it this week.
The Honoring Our PACT Act of 2022 eases bureaucratic hurdles for veterans exposed to toxins while serving, such as fumes from pits of burning garbage, some as large as 10 acres, common in America's post-9/11 wars. The legislation puts the burden of proof on the VA, not the soldier, if a soldier's medical problems may have been caused by burn pits.
But the Barbosas face a different bureaucratic Catch-22: The VA already links Barbosa's cancer to his service, but the Army does not. While the Army says he was healthy when he left the military in 2019, the Barbosas believe that's only because military doctors incorrectly diagnosed him with ulcers when he complained of abdominal pains at nearly a dozen appointments over two years. Army doctors didn't even order a colonoscopy that could have detected the cancer at a more treatable stage.
"The burn pits ... created the illness," Amanda Barbosa explained. "The illness was missed by the system. And when the illness was found, the system hides behind its own ineptitude."
But on this rainy summer morning at Mayo, they had to focus on something more immediate. Jessica Mitchell, an oncology nurse practitioner, had test results.
"Your white blood cell count is low," Mitchell told them. "When they get to be a thousand, we're not supposed to do chemo."
Barbosa's face fell. This was supposed to be his next-to-last round of chemotherapy. He'd had chemo every two weeks for seven months with a major surgery sandwiched between. Previous appointments had brought good news: Chemo stalled the cancer's growth, surgery removed all visible cancer cells. This was bad news.
It was also predictable at this stage, Mitchell explained. They could reduce his dose today and later inject a white blood cell stimulator. The downside: He'd feel awful, and he must isolate for two weeks.
They'd have to cancel Walker's camp up north. Could they at least go to daily Mass?
"No church," Mitchell said. "You're much more susceptible to infection. It's so cumulative. Over time, your body's like, 'This is getting harder and harder.'"
"Yeah," said Amanda, shoulders slumping. "We noticed that."
The couple met at UNC-Chapel Hill, Amanda an identical twin from Wayzata, Rafael an only child from Puerto Rico.
Rafael had served in the Marines, then joined the National Guard. When they met, he was fresh off deploying to Afghanistan with an aviation unit: living in tents at an outpost near Pakistan, then at Bagram Air Base near Kabul. He'd noticed the burn pits — food waste and water bottles and intelligence papers, doused in jet fuel and set aflame — but thought little of it.
Their courtship came at breakneck speed: a 5K together in September, living together by October, sharing a checking account and a puppy by November. They married the next year, before Barbosa went to flight school.
Flying was Barbosa's dream. It also meant huge sacrifices. In 2009 he deployed to Iraq with the North Carolina National Guard's 1-130th Attack Reconnaissance Battalion. Barbosa flew Apache attack helicopters. Death was always one rocket-propelled grenade away.
In Iraq, burn pits were near airfields. Pilots used them as beacons: Line up with the burn pit and you were lined up with the runway.
"It was always like a joke: 'Oh, there's what's going to kill us in 20 years,'" Barbosa said. "But did you ever question it? I certainly didn't. Some folks claimed, 'All this burning stuff is messing me up, I'm feeling sick.' But you see a lot of weird stuff in war, man. We attributed it just to something going around."
Two weeks after Barbosa landed in Iraq, his son was born. He learned about Walker's birth after flying a mission. They didn't meet until his son was 6 months old.
A year ago, life seemed stable: out of the military after 23 years, a home in St. Paul's Mac-Groveland neighborhood, Walker thriving in Catholic school, Amanda a contracting officer at the U.S. Department of Agriculture, Rafael flying Medevac helicopters for North Memorial Health.
Then Barbosa flew to Puerto Rico in October 2021 to attend to his 70-year-old mother and her pancreatic cancer, and he became ill: high fever, cold sweats, stomach pains. Amanda got on the next flight to join him.
They didn't trust Puerto Rico's medical system; his father had died from sepsis in a hospital there. They flew to Miami as Barbosa's searing pain worsened. Doctors rushed him into surgery.
What doctors found was terrifying: A tumor had perforated his colon, and he had significant internal bleeding. A surgeon removed the right side of his colon, and with it a mass the size of a kid's basketball.
"He was really at death's door," said Katarina Ashburn, a family friend Amanda stayed with in Florida.
Pathology results revealed Stage IV colon cancer, median survival rate eight months. Doctors pegged Barbosa's prognosis at two years because he was younger and healthier than most patients. Amanda prayed for the intercession of Father Emil Kapaun, a Korean War veteran and Medal of Honor recipient on the path to sainthood.
A week later, on Barbosa's 42th birthday, his mother died. He was too sick to go to the funeral.
Time became real, tangible, unavoidable.
Barbosa could almost hear his clock ticking. His glasses were old; should he get a new pair, or was that pointless? Should he start the new sci-fi show on Apple TV Plus, or would he die before finishing it? Or should he avoid television entirely, wasting time he no longer had?
"Time, time, time: How do you think about time?" Barbosa brooded. "Am I supposed to be constantly aware of every single thing that I do? It became, 'Oh my God, I need to make every minute count, somehow.'"
Every time Amanda took a photograph, she thought of death. Her husband and son on the couch — could it be her last photo of this?
Walker felt robbed. His dad missed much of Walker's childhood because of the military. Now, he was dying. But Walker processed the cancer like the aspiring priest he is. Life, Walker says, is a terminal illness. We shouldn't pray for an easy life, but for strength to endure a hard one.
"The human condition," 13-year-old Walker explained, "requires suffering. Without suffering, you can't enjoy triumph."
Chemotherapy coursed through Barbosa's body. Time marched on. And Barbosa's mentality shifted. He'd always chased life's next thing: The next military rank, his next pilot assignment, getting into medical school even though he'd later decide he didn't want to be a doctor.
Cancer made him pause. Take a breath. And ask himself what matters: Taking that family vacation to Rome, and building Legos with Walker, and buying a Harley, and making a pilgrimage to Father Kapaun's Kansas hometown, and serving as pit crew for Walker's new hobby — go-kart racing, a chip off the old block.
"This kind of tragedy can have a mercy within," he said. "It's like the difference between living intentionally and living passively. Maybe you can live to 103 passively. But did you really feel it? Or were you just a repository for time's passing?"
In April, Mayo surgeons operated for nine hours to remove any lingering cancer cells.
Four days later, a letter went out from the Army Board for Correction of Military Records. It was a response to his request to retroactively change his status to medically retired so the Barbosas could access pension and health care benefits.
"Dear Mr. Barbosa," it read. "I regret to inform you that the Army Board for Correction of Military Records denied your request..."
"The decision in your case is final."
The letter was infuriating. In his time of need, dying of a disease he believes was caused by Army policy and made worse by Army neglect, the military rebuffed him. It didn't help that each time Barbosa's first name appeared, it was spelled wrong.
The Barbosas are still fighting to turn his clock back to 2019, before his honorable discharge, and go through the Army's disability evaluation process with knowledge the cancer was already growing. Then the Army could determine whether he should be medically retired or returned to active duty or the reserves. (An Army spokesman declined to comment on Barbosa's case, citing privacy concerns. "In general," the spokesman said, "conditions that develop or progress after separation do not justify retroactive medical retirement.")
But this rejection didn't mean he must foot $1 million in bills. One more blessing: His wife has excellent medical coverage. Financially, they're OK. But this fight was never about him. It was a fight of principle, for future soldiers in similar situations. As an officer, Barbosa saw it as his duty.
"The people who do get financially ruined, they don't have the time and the space to fight this fight," Barbosa said.
He walked to room 35 of the chemotherapy unit, spry for a cancer patient. His side effects weren't bad: No weight loss, no hair loss. The worst parts were exhaustion and, oddly, hiccups.
As Amanda watched the Senate debate burn-pits legislation, chemotherapy drugs dripped in.
For hours, he sat in the recliner, bored. He watched a livestream of Mayo Clinic's peregrine falcons on a nearby roof. When Barbosa started chemotherapy, these were eggs. Then four baby falcons hatched. Now, two remained, the siblings having left their nest. The world moved forward.
When his wife returned from a quick lunch, Barbosa's forehead was beet red. He looked tired and sweaty. Medical staff streamed in.
They poked and prodded. They feared an allergic reaction. That could turn bad quickly, from itchy hands to full anaphylactic shock.
"Today is the first day I've had any struggles," he said.
After a while, a physician's assistant said he seemed OK.
"We're obviously bumping up against a stop with the chemo," Barbosa replied. "My body is saying, 'Enough of this stuff.'"
One July morning, Barbosa stood behind the confessional at the Church of St. Mark in St. Paul. Light filtered through stained glass. The decorated military veteran poured out varnish remover and buffed the floor with a power scrubber.
His project started in winter. Cancer made life stop, but he still needed something to do, and his parish didn't have a maintenance guy. First, he dusted the stations of the cross. Then he cleaned below the stained-glass windows. Then he scrubbed every tile, hours alone in the meditative dark.
It was an expression of faith, a humble show of respect.
Since cancer, life has distilled to its basics. There's survival. There's family, and their limited time together. There's God, a faith strengthened.
And there's his family's national fight to improve veterans' care. Amanda's new idea is that service members exposed to toxins may receive regular colonoscopies before age 45. She's visited Washington, D.C., six times to lobby Congress, and Sen. Amy Klobuchar, an early leader in burn pit legislation, is crafting a colonoscopy bill. She stood beside Jon Stewart in late July as the comedian and veterans advocate tore into GOP senators, then she sat on the Capitol steps for two days straight to protest. "She's been a warrior," Klobuchar said. "She created a sense of urgency."
A few weeks ago, Barbosa got his first CT scan since chemotherapy. Good news: No new masses. But his doctor laid out the numbers: Patients at this stage have a recurrence rate as high as 70%.
In the elevator afterward, Barbosa flipped that number: 30% don't have the cancer return. And anyway, he's not a statistic. So he moves forward. He is taking classes to become a deacon. Maybe, if scans keep coming back clean, he can even fly for the Army again. He is living.
Inside church, sweat shone through Barbosa's shirt. As the paint stripper dried, he looked around: Thousands more tiles before his work is done.
"I can do it bit by bit," he said. "I'm just hoping I have the time."