Long Island's 9/11 first responders endure pain, illnesses

Jamie Atkinson was just 20 years old when he found himself in the middle of search-and-rescue efforts after the Sept. 11, 2001, terrorist attack on the World Trade Center.

To Atkinson, of Sayville, and others who rushed to the World Trade Center site to help, 9/11 is more than a horrific day in history. It’s something they live with daily, in painful, often life-threatening illnesses, and in the effects of psychological trauma.

The toxic dust that filled the air and noses and mouths of responders and survivors triggered health problems such as chronic rhinosinusitis, asthma and gastroesophageal reflux diseases, as well as skin, prostate and other cancers, according to medical experts.

Atkinson spent more than a week on the ground volunteering with Community Ambulance Company at Ground Zero. Because of his exposure to the site, Atkinson said he battles a rare 9/11-related cancer that caused him to lose nearly 90 pounds and often leaves him fatigued. He has had 30 blood transfusions and a surgery and will need more, he said.

Atkinson said he has never asked about his long-term survival chances.

"You know why I don’t ask?" said Atkinson, who is now board president of the Sayville-based ambulance company. "Because I really don’t want to know. I’d rather live my life, and if something happens to me, something happens to me."

Medical researchers are starting to spot more long-term health issues with people who were there as the World Trade Center towers fell, as well as with those who participated in the cleanup of the site and recovery of remains. Some of those health concerns include a loss in cognitive function, an increased risk for liver disease, and cardiovascular disease.

"We’ve learned to be humble, keep an open mind and follow the science," said Dr. Jacqueline Moline, who directs Northwell Health’s WTC Clinical Center of Excellence in Queens and formerly ran the same program at the Icahn School of Medicine at Mount Sinai in Manhattan. "Unfortunately, studies, particularly evaluating cancer, take a while to conduct and gather enough information to see if there is an increased risk."

One recent study from Mount Sinai shows that some responders who worked at the site in the immediate aftermath had a higher likelihood of developing liver disease. About 5% to 10% of the 12,000 Long Island responders monitored through the Stony Brook WTC Health and Wellness Program have shown a decline in cognitive ability at a younger age than what normally would be expected, said Dr. Benjamin Luft, director of the program.

"As a group, responders who were 55 years old were three times more likely to have signs of minimal cognitive impairment than seen in the general community," Luft said. "This type of impairment may be a harbinger for more severe impairments such as dementia."

After 20 years, many World Trade Center responders are finding it more difficult to work with the conditions they were once able to endure, said Dr. Marc Wilkenfeld, chief of the Division of Occupational Medicine at NYU Langone Hospital-Long Island.

"It's not only that people are getting sick, it's that people are becoming disabled because of their World Trade Center health conditions," he said. "When you are 30 years old and have asthma, you are able to work, but maybe a 45-year-old whose asthma has worsened over the years is no longer able to work."

John Feal, whose Nesconset-based FealGood Foundation helps 9/11 responders, said the health problems are getting worse.

"So many are stuck at home, confined or bedridden," said Feal, who lost half a foot while volunteering at Ground Zero and then spent 11 weeks hospitalized with gangrene.

Phil Alvarez, the brother of Luis Alvarez, the NYPD detective from Oceanside who died of colorectal cancer in 2019 after fighting for an extension of federal funding for 9/11 survivors, now directs 9/11 outreach and education for Hansen & Rosasco, a law firm on Long Island and in Manhattan specializing in 9/11 health claims.

'There’s not a week that goes by that someone doesn’t call us and say, ‘I just got diagnosed with cancer.''

Phil Alvarez, whose brother, NYPD detective Luis Alvarez, died of colorectal cancer.

"There’s not a week that goes by that someone doesn’t call us and say, ‘I just got diagnosed with cancer,’ " he said.

Alvarez added grimly, "There’s not a week that goes by that we don’t hear of a fireman or police officer" who died from 9/11-related causes.

"Those are the ones we know about," he said. "How many funerals go on where the family doesn’t realize it was 9/11-related?"

Volunteer focused on others, not himself

Atkinson, 40, recalled the thick smoke and dust in the air as he assisted NYPD officers with search-and-rescue operations and helped treat responders who were injured. Each of the five or six days of his 16- to 18-hour tours, his blue uniform turned gray within an hour because of the toxic stew, he said.

"We weren’t thinking at the time it would harm us," Atkinson said. "We were thinking, ‘Let’s do search and rescue and recovery, and make sure everyone was cared for medically.’ We really weren’t thinking of the consequences of it at the time."

'We really weren’t thinking of the consequences of it at the time.'

Jamie Atkinson, of Saville, spent more than a week volunteering at Ground Zero.

The World Trade Center Health Program has several Clinical Centers of Excellence in the New York metropolitan area, and Stony Brook’s is the only one on Long Island. Overall, 112,042 people have enrolled in the WTC Health Program, according to the Centers for Disease Control and Prevention.

The Stony Brook WTC Health and Wellness Program conducts research, runs community programs and provides clinical care for responders — a definition that includes firefighters, police officers, EMS workers and construction workers.

Luft said 9/11 responders in the program undergo a lengthy and detailed annual physical that helps track any chronic or new health problems. The clinic is located in Commack, with a satellite facility in Mineola.

"We find a lot of disease, a lot of things they didn’t realize are World Trade Center-related," Luft said. "There are new cancers and sometimes a lot of psychological problems like PTSD [post-traumatic stress disorder]."

Atkinson registered with the WTC Health Program but never went in for an annual checkup.

"Honestly, I looked at it as, ‘I‘m a young guy. How am I going to come down with anything?' " he said. "I was one of the youngest first responders out there."

But in 2017, his stomach began growing and became especially hard. He thought it may have been because of his intense workouts. But his wife and friends urged him to get it checked. He was diagnosed with stage 4 pseudomyxoma peritonei. Doctors told him the cancer had been there for three years, he said.

A 13-hour surgery removed an 8.5-pound cancerous growth. But doctors couldn’t remove all of the cancer, he said.

Atkinson has been in and out of the hospital at least eight times. Doctors have told him he’ll have to undergo surgery every five years to remove the cancer because it will keep growing back. The hope is researchers one day will come up with a cure.

The cancer has caused his weight to drop from 190 pounds before he got sick to 104 pounds now. He pushes himself to exercise regularly, even though he can’t work out as hard as he used to and it leaves him fatigued.

"If I don’t keep myself strong, I won’t make it through the next surgery," he said, recalling how his surgeon said he may not have survived his first operation if he hadn’t been so physically fit.

Atkinson has had 30 blood transfusions because of multiple bleeding problems. He needs a blood transfusion every six months to replace the pint of blood he loses during that time. Doctors can’t figure out the source of the bleeding but believe it may be from the cancerous growth causing some type of puncture, he said.

"I can see it," he said of the cancer. "It’s a big lump in my stomach."

The illness forced him to retire early from his job as a Metropolitan Transportation Authority police detective, a job he started in 2002.

Even so, Atkinson said he has a positive attitude. He and his wife of five years, Brenda Atkinson, 38, "want to grow old together" and are thinking of having children.

"I live my life like I don’t have cancer," he said.

Doctor says cancers can take decades to develop

The five most common certified World Trade Center-related conditions are chronic rhinosinusitis, GERD, cancer, asthma and sleep apnea, according to the CDC. Nonmelanoma skin cancer, prostate cancer, female breast cancer, melanoma of the skin and lymphoma are the five top certified cancers, according to the agency.

Moline pointed out that some cancers can take decades to develop.

Whether or not a cancer is considered a World Trade Center health-related condition is based on science and exposure, such as when the individual worked, lived or went to school in the area, she said.

"The studies consistently have shown the most common cancer is nonmelanoma skin cancer," Moline said. "People were exposed to a variety of compounds in the dust, including a group of chemicals, PAH [polycyclic aromatic hydrocarbons], that are known to cause skin cancer. Thankfully it’s easily treated."

She also noted that prostate cancer has been found in all the groups studied, including police officers, firefighters and construction workers. Elevated levels of thyroid cancer are also common.

"We expect over time, more cancers will develop," she said.

Tom Wilson, 52, of Bellport, who was a sergeant with the NYPD, spent nearly a month at and near Ground Zero and later had three tours of duty at the Staten Island landfill where he and others sifted through World Trade Center debris to search for human remains. He joined the Suffolk County Police Department in 2002.

In 2003, he regularly began coughing out phlegm, a problem that since has worsened, and started having digestive and sinus issues.

Five years later, Wilson was diagnosed with oral cancer. Doctors removed a large mass from his tongue and replaced it with tissue from his left wrist. They also took an artery out of an arm and implanted it in his neck, to connect with the new part of his tongue.

The operation and the six weeks of head and neck radiation to kill any cancer that may have spread — they found some in muscle tissue under the tongue — left him with chronic pain.

He feels an intense burning sensation in his tongue when he talks too much. Medication helps take the edge off the pain, but "staying quiet is the best way I find comfort," he said.

Because of the scar tissue in his neck and other effects of the radiation, "It feels sometimes like somebody is choking me," he said. "If I go from a really warm atmosphere to cold AC, I feel my neck tighten up."

Wilson, who retired from the Suffolk County Police Department last November, gets severe headaches and dizziness, especially when he moves his head too much. In addition, his jaw has decayed, he has chronic bronchitis and laryngitis, gastroesophageal reflux disease and other problems. He sleeps with a nasal cannula delivering oxygen to him.

Ex-NYPD detective: 'It’s my new normal'

Robert Jordan, 52, a retired NYPD detective from Seaford who worked at Ground Zero, also endures an array of health problems. The most dangerous was stage 4 throat cancer, with which he was diagnosed in 2017 after coming home one night with his throat "on fire."

"I had a golf ball on the side of my neck" that hadn’t been there hours before, said Jordan, who remembered feeling panicked at the idea of leaving his wife and two children without a husband and father.

Several days later, his left tonsil and part of his tongue were taken out in surgery, but 39 radiation treatments and chemotherapy were needed to remove the rest of the cancer.

He gets tested every six months, and so far, the cancer has not returned. But he now lives with chronic fatigue, memory loss from the chemotherapy and chronic neuropathy on his left side that leads to a frequent numbness in his hand, making it difficult to grasp objects.

Scar tissue on his neck causes painful cramps, and his jaw will sometimes lock up, as if he were having a seizure. His sense of taste is off, and, "I have terrible dry mouth because of no saliva glands," which the radiation killed off, he said.

Jordan believes the cancer may have been caught earlier had he enrolled in the WTC Health Program. He didn’t sign up because "I never felt sick. Life was good."

Now, Jordan volunteers at the Queens site in Rego Park run by Northwell Health, which serves many Long Islanders, and he helps others enroll. He informs people who are not sick that many diseases take years to develop, and they should take advantage of the program’s free annual checkups and long-term monitoring.

'It could always be worse.'

Robert Jordan, 52, a retired NYPD detective from Seaford who worked at Ground Zero.

For those who are sick, he helps get diseases certified as 9/11 illnesses eligible for free federally funded treatment.

Jordan said that despite his many health problems, he feels good, and he’s grateful to be alive.

"I’ve learned to be very used to this," he said. "It’s my new normal. I’m here. It could always be worse."

By Lisa L. Colangelo

lisa.colangelo@newsday.com,david.olson@newsday.com@lisalcolangelo,

Lisa joined Newsday as a staff writer in 2019. She previously worked at amNewYork, the New York Daily News and the Asbury Park Press covering politics, government and general assignment.