The mesh cap that Noah Feehan wore nearly all day, every day, contained 18 terminals that delivered electrical pulses to his brain and the deadly tumor growing inside it.
Diagnosed with a form of cancer called glioblastoma in December 2020, Feehan, a 38-year-old Minnesota Air National Guard master sergeant, had vowed to do whatever it took to battle his illness even if it meant that, in addition to radiation and chemotherapy, he would wear the device 18 hours a day, sometimes enduring shocks so painful they forced him to his knees.
But the treatment triggered more than momentary pain. He stopped eating -- and smiling.
At a baseball game last summer, Noah’s wife of 13 years leaned in and asked him whether he wanted to take off the cap permanently, even if it meant abandoning an experimental weapon on which the family’s hopes rested.
"He goes, 'Can I?'" Jenny Feehan said. “I said, ‘Of course, you can.' I never saw him happier. It was like a light switch went on."
No one knows for certain why Feehan, who serves as an avionics technician, developed a rare brain cancer with an average life expectancy of 12 to 18 months that usually afflicts those in their 60s or older.
But he and other service members have their theories, after spending years working around electronics and jet fuel, operating in places contaminated by depleted uranium and pollutants, and living alongside belching pits full of burning trash.
"We're all assuming it's the burn pits," said Noah Feehan, who deployed to both Iraq and Afghanistan. "It was disgusting what they threw in there. Tires, jet fuel, body parts, plastics."
While traumatic brain injuries and post-traumatic stress disorder have been called the "signature wounds" of the Iraq and Afghanistan wars, affecting nearly half a million troops, thousands of veterans also have been diagnosed with diseases possibly connected to environmental hazards and toxic waste.
Hundreds, like Feehan, are fighting or have succumbed to glioblastoma, the most common form of brain cancer, striking roughly 12,000 Americans each year.
The few studies done on military personnel and veterans to determine whether they have been getting glioblastoma at higher rates than the general population have been inconclusive.
But glioblastoma is the third most common cause of cancer-related death in the active-duty population, behind colon cancer and leukemia.
And among post-9/11 veterans who deployed to Iraq, Afghanistan and elsewhere, glioblastoma occurs at a rate 26% higher than that found in the general population, according to calculations based on Department of Veterans Affairs and National Institutes of Health data.
Most of the stricken veterans and their families believe their illnesses were caused by military environmental exposures. Yet 42% of the 2,126 post-9/11 veterans who have developed brain cancer have been denied access to health care and disability compensation by the VA. The VA doesn’t single out glioblastoma, which accounts for about 80% of all metastatic brain tumors, for claims purposes.
For veterans and family members dealing with the emotional and physical toll of battling brain cancer, the added burden of quarreling with the VA over benefits can be too much.
"We spent the first year fighting the disease and the second year fighting VA," said Amy Antioho, widow of former Army Capt. Peter Antioho, a West Point graduate who died of glioblastoma on Sept. 27, 2020. "It should not be this way."
Antioho spends her days working on a farm and caring for the couple's five-year-old son, Mark, who has come to know his father through notes from friends and family recollections.
She tries to focus on the memories before cancer, but Peter's last days, spent in hospice, loom large. She had to shelter him from nurses who kept telling him he would eventually get better and go home. She remembers lying next to Peter, listening to the soundtrack of “Les Miserables,” holding him just as Marius cradles a dying Eponine. She relives the moment she gave him permission to go, trying to free him from the responsibility of caring for his family.
She misses her handsome soldier.
"I just remember him saying the burn pit was going to kill him someday," Antioho said.
A Military Connection?
According to the NIH, the rate of glioblastoma in the general population, when accounting for age, is roughly 3.2 cases per 100,000 people, with the median age of onset at 64.
But according to the VA, among post-9/11 veterans who deployed and have VA health care, the rate of brain cancer – mostly glioblastomas -- averaged 5.2 cases per 100,000 per year from 2015 to 2019 in a population in which nearly half are ages 30 to 39.
The rates among Vietnam and Persian Gulf vets are elevated as well – 6.2 per 100,000 per year between 2015 and 2019, according to the department.
The VA automatically grants benefits to service members diagnosed with brain cancer on active duty and to any veteran who worked with radiation while serving, or if they develop the disease within a year of discharge.
All others must file a disability compensation claim. Since 2002, more than 10,000 veterans with brain cancer or surviving family members of veterans from the Vietnam, Persian Gulf and post-9/11 eras have had varying degrees of success.
The VA told Military.com and Public Health Watch on Nov. 5 that the claims approval rate was just 16.7% for post-9/11 veterans with brain cancer, while it was over 70% and 80%, respectively, for Vietnam and Persian Gulf War era veterans.
When reached for comment about this investigation days before publication, the VA revised the data, indicating that the approval rate for post-9/11 veterans was much higher, 58%, but was much lower, 31%, for Persian Gulf War-era vets.
Officials said the 16.7% approval rate for post-9/11 veterans was determined using a “dated system.” By utilizing a new algorithm that more accurately sorted the veterans into their period of service the approval rates rose for post-9/11 veterans and dropped for Persian Gulf-era vets.
“Because they used the wrong method, they were missing some Gulf War veterans completely, and then hadn't appropriately segmented them into Gulf War One and post 9/11,” explained Ken Smith, acting executive director of the Office of Performance Analysis and Integrity at the Veterans Benefits Administration. “This is the correct way of doing it.”
Regardless of classification, just about half of veterans who served since August 1990 and developed brain cancer have had their claims denied. This, say veterans’ advocates, is unacceptable.
"People are dying, and to deny them the right to health care, to deny [compensation] to their survivors who are spending their last minutes with their loved ones, it's criminal and insulting," said Rosie Torres, co-founder of Burn Pits 360, a nonprofit in Robstown, Texas, that supports veterans who believe they were sickened by environmental exposures.
There is some hope this year that the path could get easier. The VA announced in November that it is reviewing whether some cancers and a rare lung disorder should be fast-tracked for disability benefits.
The department has not published a complete list of the cancers under consideration. But veterans with glioblastoma and families of those who died from the disease believe it should be. They note that the commander-in-chief's son, former Army National Guard Maj. Beau Biden, died of glioblastoma in 2015.
Biden had deployed to Iraq in 2008 and worked as a civilian near a burn pit in Kosovo.
"We know now you don't want to live underneath a smokestack where carcinogens are coming out of it," President Joe Biden told Judy Woodruff on PBS NewsHour in 2018, comparing factory pollution to burn pits.
Dr. Anthony Szema, a New York-based pulmonologist who studies lung diseases in post-9/11 veterans and serves as an adviser to Burn Pits 360, said he is not surprised that Iraq and Afghanistan veterans are being diagnosed with cancer.
Burning plastics and some types of fuel can release cancer-causing chemicals such as dioxins and benzene into the air, he said.
"Near burn pits, veterans inhaled carcinogens, they ingested carcinogens from the sand, they got it on their skin, absorbed it in the bloodstream," Szema said. "These cancers usually take years to develop. But [as] we saw in the World Trade Center rescue workers, EMS and firefighters, the latency was shortened. This may be the same for these veterans."
Army Lt. Col. Brett Theeler, chair of the neurology department at the Uniformed Services University of the Health Sciences and a neuro-oncologist, said it’s hard to draw a definitive link between battlefield exposures and brain cancer because the research is scant.
"It's difficult, when you have a disease like glioblastoma, to try to show a link between that, a rare cancer, and exposure five, 10 or 20 years ago," Theeler said. "Those studies just don't exist in brain cancer that link it to a modern environmental exposure. Doesn't mean there isn't a link. There's just never been a study that has been able to show it."
Studies conducted after the 1991 Persian Gulf War did find that the risk of brain cancer was higher in veterans exposed to nerve agents or chemical weapons during that conflict.
Army veterans who destroyed the Khamisiyah Ammunition Storage Facility where sarin and cyclosarin agents were known to be stored, had a 72% increased risk of death from brain cancer compared with their unexposed counterparts.
And a later study also found a higher risk of brain cancer among veterans exposed to oil-well fire smoke during and after the same war.
Concern over a possible cluster of brain cancers in seven airmen assigned to C-130 Hercules aircraft forced Air Force Special Operations Command to ask the Air Force School of Aerospace Medicine in 2009 to investigate whether the diagnoses were tied to one another and, possibly, the aircraft.
While the researchers concluded the cases were simply a chance grouping, they did raise the possibility that aviation electronics and brain disease could be linked, suggesting "further analysis of radiofrequency radiation exposure in crew areas of AFSOC C-130.”
Fighting for Benefits
Service members, spouses and lawmakers hoping to secure benefits say the dearth of scientific evidence shouldn't be an issue given what is known about industrial toxins and exposures.
Reflecting on personality changes in her husband she noticed during the last year of his military service, Amy Antioho believes a malignancy may have been taking root in Peter’s brain well before his diagnosis.
Peter, described by friends as a military "lifer," inexplicably abandoned plans to go into special operations and then decided to leave the Army altogether, despite having no job and a pregnant wife.
He began taking risks and acting impulsively. And he became extremely paranoid -- a symptom for some with brain cancer.
An early diagnosis would not have changed the outcome but would have eased the VA claims process and given the couple back some time, Amy Antioho said.
"If somebody walks into the VA and has symptoms or already has a diagnosis of glioblastoma, it should be, 'We'll help you put a package together,' or forget the package, it should be, 'OK, here are your benefits,'" she said.
If glioblastoma doesn't make it onto the VA's list of presumptive illnesses, Congress is working to pass legislation that would create a list of 23 diseases considered linked to military environmental exposures, paving the way for thousands of veterans to access their benefits more easily. That list includes glioblastoma.
The two proposals circulating in Congress, the House's Honoring Our Promise to Address Comprehensive Toxics, or PACT, bill, and the Senate's Comprehensive and Overdue Support for Troops, or COST, of War bill, carry hefty price tags – $223 billion to $282 billion over the next 10 years.
Rep. Raul Ruiz, a California Democrat who has introduced and passed several key pieces of legislation to support veterans affected by burn pits, said this is the cost of covering the "delayed casualties of war."
"We have enough evidence to have a high suspicion of causation. We need to act on that suspicion," Ruiz said. "I'm an emergency medicine physician. We don't sit around scratching our head. When people are dying in front of us, we take care of the individual."
Noah Feehan, who continues working as a full-time Guard member, will not have to endure the VA's lengthy appeals process. He received a VA disability rating of 100% in December.
The legislation will come too late, however, for spouses such as Jenyfer Johnson, whose husband, Dean Johnson, an Air Force veteran who worked on a flight line during Desert Shield and Desert Storm, died of glioblastoma in May 2019, 14 months after his diagnosis.
"The VA denied his case and unless I had grounds to ask for an appeal, there was nothing else to do," Jenyfer wrote in an email. "My husband was dying, so I just dropped the case."
The Antiohos' appeal became highly publicized after they contacted the office of Sen. Richard Blumenthal, D-Conn., for help. Amy Antioho said the process shouldn't be so complicated, involving VA claims officers, veterans service organizations, lawmakers and sometimes lawyers.
"I was learning as I went," Antioho said. "Give them evidence, get denied. Give them evidence, get denied. Each time I thought it would go through because I had all my ducks in a row. And again, denied."
The Feehans, who have paid more than $10,000 to date for Noah's treatment, say they are relieved to no longer worry about medical bills since Noah got his disability rating late last year and, for now, will focus on cancer treatment and cherishing the moments they have with their sons Jack, 14; Peyton, 11; and Logan, 8.
Jenny Feehan has been writing a blog to keep friends and family updated and memorialize these days with Noah.
"Noah and I have changed the way we look at many things in life," she wrote on CaringBridge, a website where users post health journals. "Don't sweat the small stuff, make amends, stop holding grudges, love everyone, and always tell people how you feel. We are constantly saying 'I love you' in our house."
-- Patricia Kime can be reached at Patricia.Kime@Monster.com. Follow her on Twitter @patriciakime.
Public Health Watch is a nonprofit, nonpartisan investigative news organization.