Tom Frey, 56, is a retired New York Police Department detective who was diagnosed with Hodgkin’s lymphoma linked to the time he spent at the World Trade Center site and the Staten Island landfill after the 9/11 attacks. He developed pulmonary fibrosis — scarring in the lungs — as a side-effect of his cancer treatment and is a patient ambassador for the Pulmonary Fibrosis Foundation. Frey first shared his story with TODAY in 2019 and opened up again in 2021 about life during the pandemic.
I thought I was not going to get sick, but I got sick.
On 9/11, I was sent to Ground Zero hours after the attacks. My first assignment was to gather information about dead and injured police officers. After that, I went to dig in “the pile” — the smoking rubble of the fallen towers — looking for any survivors.
We didn’t wear protective clothing the first couple of days. We were provided paper masks. That was it.
I looked up at the other buildings and they were covered in this dust and I said, “This is not good. Ten years from now, we’re going to pay the price for this.” It was like it was snowing — a grey ash that was almost ankle-deep at one point.
But we had to do what we had to do. You were trying to help and find anybody who could be possibly alive in the rubble. That's what you were concerned about. I would do it again tomorrow.
About a week after, I was sent to the Staten Island landfill where we would put the rubble through sifting machines looking for any remains. I spent a couple of months there and I believe that’s where I got sick.
We wore these white suits. They were fine until you went to eat. You would take your mask and suit off, and the dust would blow on the food. I thought, “This isn’t good,” but at the time we didn’t realize what was going on. In the beginning, you would take your suit home with you. Then after a couple of weeks, they said, “Don’t bring these suits home with you, make sure you don’t bring your shoes into the house.”
Over the years, we had a lot of people getting sick. I thought, wow, I must have been one of the lucky ones to escape. Then in February 2016, I went to the doctor for a regular check-up and found out I had Hodgkin’s lymphoma, which nobody in my family ever had. They believe it was caused by the toxic dust after 9/11.
I had to get 12 rounds of chemotherapy, but after the ninth session, I developed shortness of breath. It turned out the chemotherapy cocktail I received — called ABVD — contained bleomycin, which leads to bleomycin lung toxicity in 10% of patients.
Before the chemotherapy, my lungs were 100%. But the bleomycin lung toxicity caused pulmonary fibrosis — a fire in my lungs. When I was first diagnosed in November 2016, it was a shock. It’s a terminal disease.
In the beginning, I couldn’t walk from my bedroom to the doorway. I lived in a second-floor unit and I had to get another place on the first floor. I couldn’t walk up the stairs. It was pretty bad.
Then, I found other people with the disease and I found a specialist. That’s how I started getting back into somewhat of a normal way of life, trying to live with the disease. It took a while in pulmonary rehabilitation to get to this point.
Even before COVID-19, I had to be very careful about coming in contact with germs. A regular cold could give me pneumonia and put me in the intensive care unit. I was wearing a mask before masks were fashionable and I used to get some weird stares when I wore one on a plane and in the supermarket. Now I blend in.
The pile of problems just got a lot bigger with COVID-19. Something gave me pneumonia in January of 2020. I don't know if it was COVID, but I was lucky to get out of the hospital from that one. I was scheduled for a lung transplant last year, but it was canceled due to COVID. It's still up in the air.
I'm fully vaccinated and I'm looking into now getting a booster shot.
In August 2021, I went to see my pulmonologist and I had lost 10% lung function in six months, so overall, it's probably below 50% now. I'm starting to feel a little more tired.
Every time I take a breath, I'm reminded of pulmonary fibrosis. Every breath is basically a struggle and produced by a machine now. I have a big oxygen concentrator, a sleep apnea machine and a portable oxygen machine. Every time I go to the store, walk the dog or get in the car, it's a production. I have to set machines up and make sure the battery is charged.
You come into my house it's like a hospital almost with the machines and pill bottles. Since my lungs are going, my heart is getting affected. But I'm lucky to be alive. Lucky to be here. I take life one day at a time. I'm in the bonus rounds here.
On the anniversary of 9/11, I really shut down and keep to myself to just mentally deal with what's going on. I've been in touch with a friend who's got stage 4 pancreatic cancer. Another friend who has stage 4 bladder cancer. Both worked at "the pile." It's a tough time. People are developing all these illnesses now and we're like a little club.
The 9/11 first responders are going to get sick still. We were worried about trying to help people. We didn’t think about the consequences at the time.
This interview was edited and condensed for clarity. September is Pulmonary Fibrosis Awareness Month.