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Ep. 133: Tom Frey

Tom Frey: A hero. The New York Police Detective began his 9/11 shift like any other day. Due to inhaling dust and debris at Ground Zero, he acquired cancer and, eventually, Pulmonary Fibrosis. He is now an advocate for the PF Foundation and speaks nationally about his service to this country.

Pulmonary Fibrosis

  • September marks Pulmonary Fibrosis Awareness Month.
  • There is currently no known cure for PF.
  • Those 60+ are most at-risk to develop pulmonary fibrosis, despite 91% of this age group not knowing what the disease is and 96% having never discussed the disease with their doctor.
  • As PF is quite rare, many individuals, specifically the elderly, can dismiss the common symptom of a cough and breathing fatigue as a cold or other illness.
  • Patients who use masks and breathing equipment are experiencing heightened stressors in public due to COVID-19.

Today Show article

Pulmonary Fibrosis Foundation

 

Lucas: Welcome to Bridge the Gap podcast, the senior living podcast with Josh and Lucas. A really touching and emotional show today. We’re very honored to have our guest on the show program today. His name is Tom Frey. He’s a former New York city police officer, detective during 9/11. And during that time, he also contracted pulmonary fibrosis. You’re an advocate and a speaker for the Pulmonary Fibrosis Association. September is PF month as well as we’ve got the anniversary of 9/11 here too. So very honored to have you on the show, Tom, welcome. 

 

Tom: Thank you guys. 

 

Lucas: Tom, We had some time to talk before we hit record and we’re really captivated by your story. Please bring us back to those days back in 2001 and tell us your story.

 

Tom: Well, September 11th, it was just like any other day. I was a police officer and detective. We did an investigation and you never knew what could happen as a police officer. Every day was a different adventure. And as a detective it was like front row seats to the best show in town. So we never knew what was going to happen. And 9/11 happened. And we were sent there in the beginning as rescue and recovery. So we went down and we dug and we tried to find survivors and we did our best. And that was the beginning of the first couple of few days. That’s what we did. From there, it went on to DNA testing. Family members would come into what we called DNA testing sites, and they would bring belongings such as toothbrushes, combs, things of that matter, which contained DNA of their loved ones, who they were still trying to find and we logged that all into the medical examiner’s office. 

 

Eventually it became where they took the remains of the World Trade Center and they transferred it all the Staten Island to the Staten Island landfill. We would go through the remains, the building with rakes and buckets, and we would put everything into his sifting machine and we would try to find human remains, you know, pieces of the plane, things of that matter. And then at the end of the journey of 9/11, I guess, as a detective, it became death notifications. When the medical examiner’s office identified the DNA, we had to go notify family members, sent their remains of their loved ones with them. And that was pretty much the journey of the World Trade Center. 

 

It became a very trying time on every first responder’s lives, family lives. You know, we were working 18 hour days, six, seven days a week. There was no rest. We were exhausted. It became cold and wet, rainy and smoky. And it was a very dark time. And it brings back not just for me, but every first responder brings a lot of pain back to when we talk about it. And that’s police and fire and sanitation. I have friends who work for the transit authority is track workers for the subway. And even they had to go in and dig down on the bottom of this subway tunnels and they’re being sickened into terror now today. So it was sanitation workers. It ran the gamut: construction workers who brought the cranes in. It was a tough time.

 

Josh: Wow, Tom, so you covered a lot right there. I mean, that’s some heavy stuff. And I know we could sit here and you could share just incredible stories for a long time, but give us a little bit of a perspective cause you took us from waking up that morning  to basically through a bucket brigade, through sifting, through DNA testing, through notification. From a time perspective, help us understand: what does that time frame look like? Are we talking days, weeks, months, years? I mean what was that?

 

Tom: It went on for months, the digging and the shifting. The death notifications went on for years. You would get the call and it would be: hello, this is whoever from the medical examiner office and you knew what it was. We have a death note, World Trade Center death notification, and we would use to have a death notification log just for the World Trade Center. And you knew what it was and it was tough. It was tough. That’s basically it. 

 

But I’ll tell you one thing that got us, got me through it is the community support. In New York City, the community came alive. They came into the police station. Restaurants would bring us hot meals. Socks were donated by sporting goods stores, boots, toothbrushes, deodorant, t-shirts. These are all things that we need at night. The community got together and took it to us, to the police station. The Red Cross fed us at the landfill. When at the World Trade Center site, they actually had portable kitchens like the food trucks and they would feed us. They’re the ones that got me through it was the community. 

 

I remember after months of doing this one day, I was, I was really exhausted. I was tired. Family life has not gone well because of the hours. It’s insanity. Imagine going to work and doing that every day, it takes a toll. PTSD is through the roof for first responders or anybody who is was near it has gone through some sort of PTSD. 

 

I got a box one day. They would give us things and it was from the classroom it would say Idaho was somewhere. It was from a third grade class and it was full of cookies and cards: Thank you for what you’re doing and always good stuff. And at that point I was thinking about taking an early retirement and it stopped me and kept on going further. And yeah, it went on for a while. I remember going to a doctor after that eight months and I basically collapsed in his office. I was just exhausted physically and mentally and I had my first something in the respiratory disease area. I had bronchitis, I had never had bronchitis before, but that was the beginning of the medical problems after about eight months. 

 

Josh: Lucas, I know you and I are old enough. We’ve got a very diverse audience all different ages, all over the country, all over the world. And I know you and I are old enough and we’ve shared some of our stories in the past about where we were, what our emotions were, but the point Tom just made about what got him and many of the people through it was the community. And you know, I do remember that you. You think of that, oftentimes sadly through tragedy it’s amazing how the fabric of what a community is during really dark times really traumatic times really shows. 

 

And I can remember, it felt like our whole nation, you know, suddenly the things that seemed so important to us when we woke up that morning and we thought our whole world revolved around didn’t suddenly seem to really matter anymore. And everyone’s attention turned to what was happening there, the people on the front lines and it stayed that way for a long time. And that’s something that I wish there was some way for us to hold onto that. It’s something that our country I feel like really needs right now is to go back to the humanity of who we are as individuals, not caring about a lot of the nonsense that goes on every day and really keeping the important things at center focus, right?

 

Tom: Oh, I agree. 100% with you. I’ll tell you a story, not 9-related, that really made an impact on me about two weeks ago, and it was sponsored through Facebook. I got a letter through their messenger service and somebody said, is this officer Frey who used to work? I used to have a foot post back in the day and it was 86 to 90th street from Broadway to Central Park West. And we had some lower income areas . You went from the richest to the poorest in that area. And I used to have some schools and I used to take care of the kids on the street. And one kid was running into trouble and he came up to me asking me for help. And I’ve got him a job at a local pharmacy, it was looking good, feeling good for him.

 

And the kid wrote me a letter two weeks ago, after 25, 30 years. He wrote me a letter thanking me for saving him and getting him this job and changing his life. And do you know what that’s better than you could come up with a million dollars of money doesn’t matter. That letter, it made me feel like, yeah, as a cop, you want to hear a 9/11 story. I could tell you the 9/11 stories in this story. How about kids? I used to have to buy shoes for when they had holes in them going to school, or you buy kids lunch, or a senior citizen that was held up in their apartment, couldn’t get out and bringing them food. This is what we ran into on a daily basis. Being a cop is not just crime fighting. 

 

But anyway, I don’t want to drag you. I could drag it down so many holes, but that really made a difference to me this kid’s letter 25-30 years later.

 

Josh: Wow. Well, you know, it’s just a testament. And it’s a good reminder and it’s stuff that we need to remind our audience of  in firsthand response of that. Not only to the amazing work of our frontline workers, but to show gratitude. So it’s awesome to hear that when that thought comes and we all have those, or man, you know, maybe I should send an email, maybe a text or a note or a letter or something. And we were like, oh no, I’ll bypass that. You never know what opportunity you have there to really make someone’s day meaningful. So thank you for sharing that. 

 

So let’s transition a little bit because you know, you just began to foreshadow some of like you talked a little bit about bronchitis and you know, that maybe that was the precursor to something that you are now battling with. So take us through your medical journey a little bit, and then share with us some of the things that you’ve been challenged with since your time.

 

Tom: We’ll get into medical. I retired after 20 years. I was living in a nice, happy life in Florida. Sunshine and palm trees. I went the doctor February of 2016 for a regular checkup and that’s when this journey began for me. My doctor Kumar, great guy, he took types of blood tests every three months. And the nurse calls me: Tom, Dr. Kumar wants to see you right away. And I thought, oh crap, this can’t be good. So I get in there pretty quick. Actually you’ve never seen me move so fast and he goes, listen, Tom, your white blood cells are off the chart. Something’s wrong with them. You have cancer. That’s the bottom line, I had cancer. Well, doc, what kind of cancer? I don’t know. So it ended up I had Hodgkin’s lymphoma, a blood cancer, common in World Trade Center responders due to the toxins in the plot. 

 

My form of treatment who was going to be chemotherapy, 12 rounds of chemotherapy. It was called ABVD. That’s the mix. The chemotherapy mix. If anybody ever goes through cancer, research your chemotherapy medicine. One of the medicines was bleomycin. I’m not going to take you down the chemotherapy path, but the bleomycin is what started the pulmonary fibrosis for me. It set my lungs on fire. And basically, cause I got shortness of breath one day. Told the doctor. He told me to go to a pulmonologist. I wanted to this pulmonologist. Basically he said to me like robotics, you have pulmonary fibrosis. You are poisoned by blah, blah, blah. There is nothing we could do for you and sent me out the door. 

 

And I was going well, doc, what is pulmonary fibrosis? Isn’t there anything? A medication? No, nothing we could do for you. So I said, Oh good. It’s not cancer. I said, this is great. I have pulmonary fibrosis. This is great. Nothing they could do for me. I’m going to be fine. It was fine until I went home and Googled. Basically he sent me home to die, this guy. And the next day after reading all this, I pulled the fire alarm. I’m calling the doctors who basically told me to get my affairs in order. I then went to my oncologist at the time and he told me, I said, well, you think I’ll get four years out of this. He said, I’ll pray for you.

 

Good, God. I am in big trouble here. The estimate is two to five years, your life expectancy from pulmonary fibrosis. A lot of doctors like the one I went to, he’s a pulmonologist. If you had asthma, I am sure he’s a perfect doctor for you, but pulmonary fibrosis, it was not the guy’s forte. So I had to learn about pulmonary fibrosis and doctors don’t know about it. A lot of doctors don’t know about it. So of course you get on the internet. Now I found the Pulmonary Fibrosis Foundation, and they got me through this. Support groups, online chats, doctors, they have it all for this disease. Nobody else did. I found a specialist at the Mayo Clinic in Jacksonville, Florida. So I went to him and I started finally getting the proper help. There’s no miracle for this. There are some drugs that could slow it down.

 

There’s none of that too short because they know what caused mine, I’m not eligible to have the drugs. It’s for IPF, idiopathic. They don’t know what causes fibrosis. For me, they know what caused it. So I live with the oxygen and I have about eight or nine medications on my table. Myy life has gone from a normal life too every week, it’s a different doctor’s appointment. Be it the cancer, which is in remission, thank God, but the cancer. Forget about cancer. That’s, I’ll take it back if I could get rid of the pulmonary fibrosis. But you learn how to deal with this pulmonary fibrosis. 

 

When you deal with people online, you know, thank God for the internet and like your podcast. This is what keeps us people with our terminal diseases going. We have to find other people. For me, it was finding other people that had this disease. So the average is two to five years when you get diagnosed with this. It gets very hard for you to breath. Eventually it’s going to be, it’s like breathing through a straw at times. So I have this machine and some days are good days, some days are bad days. Temperatures: if it’s too hot outside, I gotta put it up a little bit. Still call you, turn it down. If you’re walking, you turn it up. If you’re sitting, you turn it down. You have to start learning about pulmonary, how to live with the disease. So that’s my life now.

Do you have any questions at this point or do you want me to just keep rambling? You know, cause I could ramble you’re right down this rabbit hole. So anyway, now I run for the Pulmonary Fibrosis Foundation, I am an ambassador. So I talk to different groups, different people, such as yourselves about the disease you know, what causes it. They don’t know what causes it. In my case, they do. And the majority of people, they don’t know what caused it. It could be chemicals. It could be woodworking, it could be tons of different things. I also run a support group meetings. Now most of the people are much older than me that are in the meetings. So I became the sort of support group leader, unfortunately, through death. I became, you know, the original founder of our group died and I was next in line and it’s a tough disease.

 

Mostly the people are about 20-25 years older than me that come through the door. They’re Learning how to live with this disease. Learning how to use the oxygen tank. I was in a restaurant the other day and I hear this beeping. And it’s an alarm that I have on my oxygen machine. And the beep means something’s wrong either. I’m not getting oxygen. My battery’s low. The hose is kinked and you know, something like that. I’m walking up my machine and it was fine. And a minute later I heard the beacon again, it’s fine. I’m saying, what the hell is wrong with this machine, the bing is going off, it happens. It was an elderly lady on the next table with the husband next to me. And I look and she had the same oxygen machine as me. And I’m trying to get her attention. It was a husband. She said, she’s deaf. She can’t hear. I said, well, her oxygen machine, the alarms going off. Oh, she’s not breathing through the tube right. That’s why it’s going off. So I said, well, she’s got to adjust the tube and this and that. And it turns out she had IPF. She had the same disease I had. And she had just recently got diagnosed with it and she didn’t even know how to use the machine. So this is where like the Pulmonary Fibrosis Foundation comes into play. How does she have a machine and not know how to use it? Or, you know, it’s, it’s sad. But these are the things that go on. 

 

Lucas: You know, Tom, he’s out saving the world. No matter if he’s having breakfast or what, he’s out there.

 

Tom: Let me, let me get something. Don’t feel sorry for Tom, right? Let me tell you, when the doctor told Tom, you know, pack his stuff up, get it together. It’s time to go. For the first six months I sat around and I was waiting to die. I’ll tell you what: I was waiting. You know, I’m going like, what, this is it? I’ve got six months. I should be out of here. And then after six months when I didn’t die, I said, screw this. I said, screw this man. I’m going to live. I’m not going to sit around and feel sorry for myself. And you know what? I constantly keep moving. I’m not a guy to sit around in the house and wait to die. Not me. So I do my ambassador stuff. I’ll talk to people. I’ll represent. It’s a great organization. I’ll run the support group meeting. And I’ll take the phone calls and talk to people and try to get them through it. 

 

I talked to other cops who were having problems, not just with PF. I know guys with prostate cancer, stage four. And they said, we talk to each other. There’s a cop Lou Alvarez. He was at the Senate hearings, performing with John Stewart. I have a plaque over here he made for me. And Lou and myself used to talk before you passed away. And he got me through, he went through 69 rounds of chemotherapy. And I want through 12 and I felt like a sack of crap, he went through 69 rounds of chemotherapy. Could you imagine? I wouldn’t be able to do it. And this guy had kids, 14, 15 years old and that’s why he did it, but I’m not going to sit around. I don’t feel sorry for myself. 

 

And when they diagnosed, yeah, you could sit around, but I went on cruise ships until they stopped. I would go on a cruise ship every month or two. I would go to New Orleans, New York City every month or two. I kept on the move and I still keep on the move. I work at a college two days a week in the security department. I answer the phone, but at least they go, why are you doing this? Why are you going out to answer the phone? Because I need some sort of purpose in life. You know, my life is not over and I’m going to be the guy that’s going to live 18 years with this disease. So, so let’s, I’ll make you guys a deal. We’re going to do this show again next year, same time, right? Because I’m not going anywhere. 

 

Josh: It’s a deal, man. That’s the deal. 

 

So Tom, you know, you’re educating me, you know, my eyes are getting opened wider and wider to this. I’m assuming there’s probably a growing number of people around me that are carrying oxygen around just like you are, that are probably battling with this now. I didn’t even know the name of what they’re suffering with. 

 

I’m assuming the foundation that you’re a spokesperson for an ambassador for are obviously trying to find a cure. But the other things I’m hearing, which I think is where we can also help is it sounds like education and support have been two really key components of what have helped you, but also what you’re trying to help others with is that right?

 

Tom: That’s right. A hundred percent.

 

Josh: So can you give us a little bit of a snapshot? You may not have numbers or stats, but I mean, what is the prevalency of this? Because you even yourself said not too many even doctors know about it. I’ve certainly didn’t. What is the prevalency? And what’s the growing, is this like a major growing issue? Is it still a small group?

 

Tom: It’s growing. I can’t give you the exact numbers. I think this was a totally misdiagnosed disease years ago, and now they’re getting the proper testing for it. And the doctors are testing, becoming more aware of the signs of disease. I think it used to be diagnosis, possibly COPD in the past or things like that. And now they are diagnosed properly. 

 

It’s not a common disease though. It’s more of a rare type disease. Had you ever heard of pulmonary fibrosis before you were doing this show?

 

Josh: Me personally, I had not. No. When that came across-

Tom: Me personally. I never heard of it. And everybody I talk to, they say, hey, I’ve got pulmonary fibrosis. Nobody’s heard of it. That’s why we’re getting the word out. In doing your show, you know, somebody, hopefully we’re going to connect to somebody who connects to somebody who connects to somebody. 

 

Josh: Sure. So what you said that you’re still go into doctors, you take a lot of meds, you’ve got your oxygen. What does treatment life look like coming in? What are the treatments for this?

 

Tom: There is no cure treatment for this. You could do a lung transplant. That’s your ultimate goal. I was actually looking into a lung transplant at New York university in New York, right before COVID checks hit at the same time. So when the smoke clears from all of this, I’m going to go back to New York hospital in New York. And they’re two wonderful doctor that I met at a pulmonary fibrosis function. It was called Runway Belts in February and discussed further doing possible lung transplant. But if you go through chemotherapy, a lot of hospitals don’t want to do a lung transplant till five years after your chemo. But it appears that New York hospital would make the exception. Some will make the exception. So otherwise your treatment would be oxygen sorry, prednisone, and like a Z-pack type thing. So you are trying to keep your lungs and airways open.

 

It’s very difficult. I can’t be in any, if I’m around any smells, chemicals, somebody smoking. Like somebody smokes, there’s smoke going through this machine because this machine is getting air from the surrounding air. And it’s going into the machine. So if somebody’s smoking, it takes into my machine and I’ll be in taking it into my lungs. If somebody with heavy perfume comes into the elevator I’m in, it’s going to get into the machine and I’m going to (react). So these things could set me off. 

 

You’re going to have good days and bad days. If I catch your flu, the flu will put me in the hospital, which has happened a few times with pneumonia. I’ve been laid up a few times with that. So I was wearing masks before masks were prevalent. Before they were in fashion, the masks. I was wearing them before they were in fashion two years ago.

 

I used to get crazy once I get on the airplane, I’d have my oxygen tank and to get on the airplane with these oxygen tanks, that’s a whole nother thing of why you need this foundation. You have to learn how to kind of fly, how to travel with these things. They have to get paperwork and permission. And yeah, you know, you have to go through TSA and give yourself an extra half hour cause they have to check this equipment and swipe it for explosives. And you know, the airlines want special permission or doctors slips. And you have to have enough battery power for a flight and a half. If the flight is three hours, you have to have four and a half, five hours. So these are the things you deal with. And I would be with my mask on the plane and people would look at me one, I was not, but now I’m not so nuts. So that’s what you have to deal with.

 

But with this disease, it’s important that you keep moving. Don’t sit down and die. Keep moving. I would go and I still go to Target and I take my tank and I take my dog. And my dog drags me around Target. And I put this oxygen tank in the car and the dog, and I would go around the shop three or four times with the cart, the current flight of my wheelchair. And now it’s like my Walker. So I’ll take the cart. And I was zip around Target three or four times. And that’s my exercise for the day. Or it could be Home Depot or it could be Walmart or, you know, wherever you feel comfortable with. So just get up and keep moving.

 

Josh: I can’t think of a better spokesperson. And you know what I’m just sitting here thinking is I constantly try to encourage our teams to encourage themselves and to encourage you know, our residents that’s within the aging population, that to never forget their purpose on this earth, in spite of their frailty, in spite of disabilities, to constantly be recognizing that the, as long as they’re breathing, they have a God given purpose. And for you, you know, it is evident to me. You were placed on this earth to help other people. And it’s been evident that you’ve been doing that from early in your life. And so I’m honored to be able to spend just a little bit of my day with you. Thank you for sharing it with me and Lucas. And it’s truly inspiring. And I hope that well, I know that our audience is gonna love hearing your story. It’s very inspirational as well as educational.

 

Tom: Well, thank you for having me again and remember anybody who does come down with this, or if you know somebody who has this reach out to the Pulmonary Fibrosis Foundation, they are a fantastic organization. They will help you with all the educational material and support and upcoming medical trials. And, you know, there are things coming up in the pipeline. 

 

I met an interesting doctor at a seminar once through this organization, she was making loans in Texas, right? But there are things coming out. Will I be alive for it? You know what I hope so. I have a saying: Nobody gets out of here alive. So once again, I’m going to go kicking and screaming. I’m not going so easy. But you know, they have a lot of stuff coming out. A lot of medications, they have trials going on. So there is hope. Don’t give up hope, keep moving. Don’t forget the foundation. If you could financially support them, they always need financial support for the good work that they do. They’re there for us. So use them. 

 

If I could ever be of help and look me up: Tom Frey.I’ll be glad to help you out. Glad to try to say, in the right direction, get you to a support group meeting you know, try to help you. That’s the best I could do. 

 

Lucas: We will make sure that we connect all of that in our show notes. What a riveting conversation. Tom Frey, you’re an advocate, a survivor, and a responder. You’ve given your life to serving others in this country. And we thank you for that. We appreciate your time on our program today. 

 

Tom: Okay. And listen, we’ll do it again next year. And the year after that, because once again, I was dead two years ago, according to a certain doctor, I was not going to be here, so we’ll keep going. We’ll see you next year. 

 

Lucas: We look forward to that, Tom. We will make sure that we do that. Thank you so much. And we’ll make sure that we connect everything in the show notes. 

 

Thanks to all of our listeners. We hope you have a good day. We’re thinking of you and we’re praying for you. We’re rooting for you in the senior living industry. Have a great day. And thanks for listening to Bridge the Gap.

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