Tom Frey, 54, 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 shared his story with TODAY.
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.
Luis Alvarez — the first responder who testified before Congress this summer — and I became friendly when I was going through chemotherapy. He sent me a plaque, which I have by my bed. He was just very upbeat, very positive to keep going and keep fighting. He was a great guy.
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. Now, I can walk miles. It took a while in pulmonary rehabilitation to get to this point.
As of right now, the disease appears to be stable. My lung function is at about 50%. But it's like living while waiting for the roof to collapse on top of you. You could go down very quickly out of the blue.
When I’m out of the house, I’m on oxygen. You have to be very careful about coming in contact with germs. If I go on a plane now, I have to wear a mask. If someone sits next to me and sneezes or coughs on me, a regular cold could give me pneumonia and put me in the intensive care unit.
I ended up in the hospital when somebody was smoking next to me and the smoke got into my oxygen concentrator. It goes right into your lungs.
The 9/11 victims fund has helped me pay medical bills. In the beginning, I had good insurance with the city, but I was almost bankrupt from the co-payments, or when anesthesiologists wouldn’t be covered and it would be thousands of dollars more.
It’s financially, physically and mentally draining, and it’s disgusting after having to go through all that, first responders had to fight for benefits and treatment. It’s just not right.
Thank God for Jon Stewart and Luis Alvarez and all the people who went to Washington. I went through 12 rounds of chemo and it was like torture. For Luis Alvarez to do 68 rounds of chemo — I couldn’t even imagine what that man went through and how he must have felt.
As Luis said, 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.