Do Your Job- Carney Strong

Everyday Podcast Network : This podcast is part of the Everyday Heroes Podcast Network, the network for first responders in those who support them.

Intro : Welcome. The trials of first responders and their families aren't easy. Enduring the Badge Podcast is building a community to help them out. Introducing your host back by 30 years of experience as a first responder, Jerry Dean Lund.

Jerry Lund : Hi, everyone. Before we jump into this next episode, I just want to take a minute to thank my sponsor, Patriot Supreme, an incredible veteran owned company, making top notch CBD products that I trust and love. And I use them in my daily life. My personal experience with a broad spectrum CBD oil is it gives me energy and it also clears up that brain fog when I don't get enough sleep. I also used it coming out of COVID when I had that brain fog that you all know and I probably have had once you've had COVID it just doesn't seem to go away. And this really helped on a day to day basis. Take that brain fog away. My favorite right now that I'm using quite a bit is the Deep Freeze roll on. I got a little bit of a bicep injury and I'm using that to help relieve some pain. But they have so many great products that you'll love like I do. They have CBD gummies, they have CBD gummies with melatonin, they have CBD capsules. Please check them out patriotsupreme.com. You can also find them on Facebook and Instagram. Let's jump right into this episode. My very special guest today is Lillian Carney and she is the President and Executive Director of Carney Strong.

Jerry Lund : How are you doing? 

Lillian Carney : Thanks for having me? I'm doing pretty good today. How are you doing?

Jerry Lund : I am doing awesome. I'm so excited to have you on.

Lillian Carney : It can be a great day to talk.

Jerry Lund : Yeah. So introduce your audience to yourself a little bit.

Lillian Carney : So my name is William Carney. I am the President and Executive Director of the Carney Strong Initiative. I am not one of the cofounders, I stumbled upon it. I don't want to say by accident, but it was some other people who who formulated the organization and they invited me to join along. So of course I said yes. But it was it all started because my husband of 20 years Josh Carney was diagnosed with stage four melanoma in June of 2017 and passed away in October of 2017. So it was a very quick, aggressive form of cancer. And Josh, his cousin in Connecticut, Christine wanted to wanted to do something in his in his memory. And so she raised some money to buy some decontamination wipes for their hometown department in Connecticut. And she placed a large order of responder wipes. And so Tonya, the owner, responder wipes reached out to Christine, you know, to find out like, okay, what's going on? They did a little talking back and forth. Christine told Tonya about Josh. Tanya actually had a mutual friend of Josh is Aaron Heller. And so Tonya had already sort of known about Josh's story and what happened. And as you know, Jerry, you already talked with Tonya, she's an amazing person, she has a huge, she's, she's just wonderful. And so her and Christine got to talking and they wanted to donate more than just wipes that turned into they wanted to donate to more than just one department. So they had already talked about what they wanted to do the kind of plan they were working out for the rest of 2018. Cristine kept in touch with me during all of their talks, just making sure that I was okay with each one of the steps they did in the course I was, you know, I was so elated that it was it was going to be in Josh's memory. And it was, you know, someone else was taking this proactive approach to really get his name out there, and to get a story so that others could learn from it. And so of course, I was thrilled with everything. And it came at a perfect time in my life to really just jump in. And so we turned it into, we were going to do one donation a month for the rest of 2018 to we just made our I don't even know our 36 monthly donation. And we've donated to 150 apartments in the past three years. So,

Jerry Lund :  That's awesome. Awesome. 

Lillian Carney : Yeah. It is.

Jerry Lund : And Tonya is an amazing person. And she's obviously connected with you what you're doing something incredibly amazing too. And with Josh's story, and we'll get more into Joshua story and how you doing. So go ahead. No, you got no I just think that's a such awesome such a just a great thing to start this process where you started donating and then it's just growing and growing and growing, which is I and I hope this podcast contributes to that.

Lillian Carney : I would appreciate I hope that I hope so. And I appreciate you having us on to talk about it too. So yeah, we started off Tonya reached out to a couple of distributors and companies that she knows in the fire service, center squeeze. And she reached out to brothers helping brothers. They are another nonprofit organization to run everything through them. And so between Tanya citrus responded wipes, citrus leaves and last line of cancer defense. We started making donation. And then we start talking to more people, we met a couple people like some conferences, and word gets around. And so we had a couple of different other organizations reach out to see if they could help out. So we ended up bringing on fire wipes, as well as firefighter cancer consultants with some online training. And then we actually just partnered up now with fire soap. So we've added in some fire soaps from our monthly departments, as well so and then even more exciting beyond our monthly departments we teamed up with first and emergency products to they do some gear, equipment inside trucks and cheap vehicles and that kind of stuff. And so they do the containers inside of them. So we reached out we're doing another donation with them to give away what they call their shoot me Sorry. But so it's it's it's a gear safe that goes inside of, in the back of the in the back of the like, ah, shuffling my words. But yeah, yeah, the Chiefs vehicles, and so we're doing another donation with them. When we give that away, we're also going to be that winter department receives that we'll also get 20 in a text hoods that we're going to be donating. So. So we did start off really small, we still are a small organization, we still giveaway, we still donate smaller type items, but we're trying to you know, just at least get the word out there and and share and share our family stories share Josh's story, to remind people that there are so many things that they can do and they need to do. And just kind of show him the other side of it. If you don't, you know if you do end up getting cancer, some some of the effects beyond the side effects that you get from the treatment itself and and how that affects your life and your family.

Jerry Lund : Yeah, yeah. Do you mind if we talk about Josh's story and how that came about? 

Lillian Carney : I do not mind. I do not mine talking about Josh's story. So we were highschool sweethearts. I'm not going to tell you when we were in high school a long time ago. 

Jerry Lund : That's awesome. 

Lillian Carney : We were both from we're both from Connecticut. And when we were in high school, he actually was a volunteer at his hometown department in North Haven. So he got the Firebug super early. He was 16. And him and his best friend Dan had started going to their local department. They were volunteers there. Josh didn't really want to do anything else with his life. He wanted to become a firefighter. So when we graduated high school, he joined the Air Force, where he spent four years and he was a firefighter in the Air Force. We got married, and we weren't ready to move back to Connecticut. So we filled out some applications on the East Coast. And lo and behold, Midway Fire Rescue in Pawleys Island hired him. And so we moved down to South Carolina and we stayed. And so he got hired on in January of 2000. And stayed until until the day he passed away. He ended up they medically retired him on the day he passed away. So he did 25 years altogether couple years as a volunteer four years in the Air Force. And then the almost 17 years that midway. So it combined it was over 25 years in the service. Yeah in the fire service. 

Jerry Lund : Yeah, that's awesome accomplishment. 

Lillian Carney : Yeah. And so he was a captain, the beginning of 20 or 2017. And he in the beginning of 2017 is when he had the first spot on the back of his head he had always had the military style haircut there short but close to balls, you know, it was like, like I don't even know number two on the right on the razor but and he's he had a spot in the back of his head that we thought was an ingrown hair. You know, I mean, that happens, right? And it didn't go away. But it didn't hurt so, so we just went about life. He was testing and studying to be for the battalion chiefs exam. He was attending FDIC, he had some training in Charlotte, Charlotte. I had traveled a lot for work back then. So we just went about life. And lo and behold, the one front on the back of his head turned into another one, somewhere on the back of his neck and then he had one on his side. But they like appeared and they didn't hurt and he had no other symptoms and was nothing wrong with them. They didn't hurt to touch, they didn't give him any pains. And so it wasn't until May that we finally made the appointment for him to just go see the his his general physician. And it was a general physician who said to Josh, you have to tell me that it hurts. In order for us to refer you to a surgeon to get the one on your head removed. Stubborn, Josh? Well, it doesn't hurt. And so the physician was arguing with him saying that you have to tell me that in order for an insurance to cover it, that like so we can get the surgeon to remove the spot that's on your head. One thing I forgot to mention is the one in his head, it did start off as what appeared to be an ingrown hair. And over the course of that couple of months, it did grow. And so it was a little bit bigger, a little bit more pronounced. But again, it still didn't hurt him. So at that point, it's like, okay, now it's now it's, you know, kind of obvious, because if you don't have any hair, so so he finally did break down and tell the physician that Yes, okay, fine, it hurts. They made an appointment to see the general surgeon and the general surgeon said, "Let's go get a PET scan for that." So he got the appointment for the PET scan two days later. And then two days after that. He talked to the general surgeon, and that's one of the general surgeon is the one who told him he had cancer. He didn't give him any more information, just that, that he definitely, that he definitely didn't know, I'm saying that backwards. He went for the PET scan, he was told that they that he did have cancer, right? They, they wanted to do a biopsy to remove it. So two days later after that. So it's like Monday, Wednesday and Friday of that week. And so Friday, he went for the biopsy to get it removed, the one in his head while they were in there, they actually found a second one right next to it. So they removed both the ones on the back of his head and sent those out to to determine exactly what type of cancer it was. But then a week or two later is when we met with the oncologist and it was stage four melanoma.

Lillian Carney : We, yeah, yeah, it was I mean, it was it was a lot, it was a lot all at once. And I am the type of person who has to plan everything out. So to hear you have cancer, to hurry up and wait. I wanted to go plan everything, okay, let's start doing this. Let's plan this, let's plan this. And it was so it was such, it's, it's already a long time anyway to find out what the plan is going to be. But then we added Fourth of July on top of it. And it just seemed like it took forever to find out anything. And we were this is probably gonna be the first interview that I actually start talking this way. Meaning I don't want to say that I sugar coated things before. But we were naive, and we were stupid. We did not we shouldn't have waited. One thing that I do tell a lot of people, and it's something that I've tried to do since day one of his cancer diagnosis is a day one. When we were talking at the kitchen table about him. And and his diagnosis, not knowing anything. One thing that we said is that we were not going to play that should have could have would have game, right. So we're not going we're not going to say I wish I knew that we were done this differently. And we had established that right from the beginning because it was the only way that we were going to survive anything for so long. Yeah. And you know, it's like, and I still to this day, I will still tell people that you know, when I have when I know people who are diagnosis, the first thing I say is, don't play that game because it's a rabbit trail that you can get consumed in and and so even after his death, and now I still try very hard to play that game. But I have to be honest, and I have to say we knew something was wrong the beginning of the year. We knew there was the bump doesn't show up out of nowhere. It wasn't an ingrown hair, because it didn't go away. So we knew something was wrong. But we went about life like it was no big deal. 

Jerry Lund : You can see right, you're busy and you're, it's happening. And you're like I know for me and some of the stuff I've gone through and I've talked to you a little bit through email about it. I've had some skin cancer stuff, too. And you're just like, Oh, yeah, I'll get to it. I'll get to it. It's like it's right. It's not that big a deal. It's not hurting as much or not so noticeable. And yeah, you just you just keep going.

Lillian Carney : I don't have time I don't have time to even call the doctor to make an appointment right now. And then this is happening and then I have to do some this with the kids and we're going on this vacation and life gets in the way and before you know it, there's you know, three or four more bumps and five months later you're making an appointment to go to the doctor.

Jerry Lund : Yeah sorry. I got one question for you about the spots that appeared on his head and then on his neck and on his side, did they all look the same? Or did they look? Did they look completely different from each one? 

Lillian Carney : No, they all pretty much look the same. So they were all spots that they were all subcutaneous. Everything was under his skin. So it was basically like, it was this dip before it was it, I guess? Okay. You know, that's why we thought it was an ingrown hair. because there wasn't any there wasn't, there wasn't a discoloration. There. In the beginning, there wasn't a discoloration, there wasn't any type of scar there wasn't, it didn't feel different. It was it was just a razor bump. Okay. And then, as time went along, and you know, as when, what, and then all of a sudden now they're like, they seem to be everywhere. They, there was a couple of them that did change. But in the beginning, no, they were just they were all subcutaneous bumps that just were there.

 Jerry Lund : Yeah, everybody listening, everybody listening right now is like, thinking about all the spots on their bodies? And like, you know, I haven't checked or what, you know, what do I do? 

Lillian Carney : Yeah, you should absolutely have them checked. If you are even questioning it, you should absolutely have them checked. There's even if even, you know, even if it is there's no, there's no mold. I mean, if there's anything wrong with your body. I'm telling you right now, it's better to go to the doctor and make the appointment. It's better to have to use two hours of sick time, you know, to get that appointment to look to find out just start that process. Well, before it's a problem. 

Jerry Lund : Right. So your See, 

Lillian Carney : Which is what we didn't do.

Jerry Lund : Yeah. Right. I think we all have areas in our lives that we can look at, we do things like that and just pass them on. So as you're going through this process with John [Josh] and you get the results back from this, the biopsy and stuff What, what takes place next?

Lillian Carney : So, uh, like I said, Josh, and I did a lot of sitting and waiting. It was a lot of sitting and waiting. We did not, we didn't when we first talked with the oncologist and he gave us the treatment plan of what he would do. We said, okay, we said, alright, this is this is if this is what you think is best, and this is what we're going to do. In the beginning, Josh was very adamant that it wasn't career related. You know, he likes to be in the some of the kitty like to peel his sunburns. when he was younger, he doesn't you know, he like every man he doesn't put on sunscreen every day. And, and not that we spend a lot of time outside of the sun. But, you know, he's it's melanoma, it's skin cancer. And, and so, I started I was the one who was doing a little bit more of the research and was trying to tell him that no, there's a good possibility this is career related. This is, you know, like you didn't have I cannot remember the word that the oncologists use but with melanoma, there's that one original source, okay, and they couldn't find the original source on Josh. So when it's typical melanoma, typical skin cancers, there's there's one original source that they know that this is where it started from. And they couldn't find that on Josh. So so with that information, and his 25 years in the service, and going through and doing like reading these white papers online, it did take him It took him probably a good two months before he finally was like, Yeah, it's definitely career related. It's not from it's not just from just being outside in the sun. Yeah, and it's, it's not just from waiting from, you know, January to May to make the appointment. Because he did have he was straight up diagnosed with with malignant melanoma he had, he had two lymph nodes that already had in there, and then they ended up doing a brain MRI, and he had several spots in his brain as well. So So at that point, it had already traveled and spread. So we started the treatments at the oncologist had recommended and I'm not saying that their oncologist was wrong, because octavo and I forgot the other one, but there was two different immunotherapy drugs that we were going to that he was going to be taking and doing the research, they had a higher success rate of prolonging life or even, you know, reducing the cancer or even there's, there's several people that were safe three and four that were on these two drugs that are now cancer free. So it was promising. And so that's why we didn't push for a second opinion or to try to find a different option, or any of that because we did the quick research with those the two immunotherapy drugs and it was promising. Unfortunately, it didn't actually have any effect on Josh. It seems like either one of the drugs for the spots in his brain. He did end up going for direct brain radiation to the spot. And that was one thing that that that the treatment for that did reduce the spots in his brain. So he was able to do I think 10 days straight of the direct brain radiation. And then a couple months later, a couple of weeks before he passed away, actually, we got the we did another MRI, and they got the results. And there was, we were so excited, we were joking around because he had shrinkage of the tumors in his brain. So it was fantastic. And even though at that point, it's the end of September, beginning of October, and he is feeling like crap. And, you know, he had all the side effects from the treatment. And, and, and he just was exhausted. It was we had this glimmer of hope, right. And, and, and then, and then to find out that after we did another PET scan, after three months of being on the drugs, that the drugs were not working, the cancer had spread. So it was, um, it was rough. I can't even and he had, he had so many of his symptoms that he was having were side effects, side effects from the drugs, or so we thought were side effects from the drugs. And, you know, it's like, it's really hard to tell the difference is, "Are you tired, because you're not eating enough, or you're not eating enough because of this?" And, like, between the treatments between the cancer itself, it just, it wasn't, it wasn't good, he ended up his kidneys ended up starting to shut down. And we thought because of the symptoms around that we thought, Okay, look at the symptoms for the drugs, and that's one of the side effects. So, so his kidneys actually started shutting down sooner than we thought.

Lillian Carney : And then when we got the results of the second MRI, and we were talking to the doctor, at that point, when when the oncologist is, is basically sitting there has no other words other than your kidneys are not functioning. So you do not qualify for this trial. And there are no other trials because of everything else that's happening. So I'm sorry, you know, and that that for me was like, okay, what's next? You know, like, I accept that, you know, like, Okay, so what can we do anymore? Is there any more trials? Is there nothing? And you're just sitting there? And they're like, no, I'm sorry. And so at that point, it was definitely like, okay, okay, so we're stopping treatment, there's nothing else they can do. But there's no, there's no, there's no packet, or there wasn't with our oncologist is what I should say. Like, there was no, these are the next steps, right? So I understand that we don't have another course of treatment. But now what do we just go home? Like, do we do? How do I call hospice? How do we prepare for this? What is it we should think about with this? And, and I didn't have that. And it was just like, I don't understand. I don't I don't understand how you can just say I'm sorry. And then nothing? 

Jerry Lund : Yeah, I'm like the whole time, you're saying this stuff. And I'm like, "Who's there to help you navigate this? Like, who's who's your advocate who's, you know, has, I'm just like, has your arm around you?" And like, "Hey, this is what we're, what we can do this. And this is where we're headed and things like that", instead of just, it seems like you are having a checklist. Yeah, there's no checklists, and you're the one that's trying to navigate anything as best you can. Plus, you know, the emotional side of things is just...

Lillian Carney : Yeah, I'll go with it. And he was 41. I was 40. I mean, we like this is this, I've never done this before. My mother in law was a rock. She came. I mean, she had been down. She was she's from Connecticut, and she had come down several times. You know, she'd always come down to visit anyway, and then came down several times during his treatments and stuff. And, and when we called her she was I think she was here for like, 10 hours later, which is a 13 hour drive, by the way. Yeah, it was, it was nice to have her because at least at that point, she did have, she did have knowledge she did have that experience with other family members of Okay, so let's call Let's call hospice, how do we do this? And, and just, you know, to really kind of make sure that we had everything planned out. So it's just that initial shock of Okay, where's my checklist? Now? What do I do, and there's nothing and so, you know, between my mother in law, and I have this core group of awesome friends that just took over everything. And anyway, so we did the, the oncologist did tell us that he'd probably have, you know, two to three weeks and we did not, it was it was seven days later from the day that that that we stopped treatment. Yeah. It was seven days later that he that he passed away but

Jerry Lund : that's, that's. That's that with cancer and stuff like that the timelines that they give you and things and the waiting and it's just like It's just so hard to take take in. And it seems like the timelines are never correct. For the good or for the bad. It's just like, it's, it's just a wild guess, in some ways that they're they're kind of giving. Yeah. And I guess I can understand that. But that, I mean, that's, like you said a 41 and 40 trying to prepare for someone's end of life. You know. And I, you know, as a as a fireman, a first responder, and I'm sure Josh is was very proud and had been incredibly just, you know, added on top of his weight of the situation going on.

Lillian Carney : Yeah, so for, you know, for Josh, like I said before, it did take him, you know, a good couple months to realize this as firefighter related. We did end up we did end up making the appointment with the attorney. So we did get a full Living Will and Testament. He did end up getting a DNR and I have a little chuckle on that one. Because, you know, I know what a DNR is, I understand why we have them, I understand why they're needed. But sitting at the attorney's office, and we didn't talk about that beforehand. And so we're like telling them what we want to put in the will and and how this is happening. And and then is there anything else you guys need? And I'm like, No, we don't need anything else. And Josh said, I'd like to fill out paperwork for a DNR. And it was like, What? No, wait, what I don't I don't understand. And I mean that that moment hit me like a ton of bricks, because I understand what we were doing at the attorney's office. Yeah, I understand. We were preparing for a life, you know, without one of us in it. But the DNR is real. Yeah, that just it puts a whole different, whole different light on it. But so between we we made the preparations, we made sure that several things were in place we had already, you know, luckily, we had already, you know, gotten life insurance. And he had saved, he was not a type of firefighter to use his hours, he did not earn and burn his vacation or sick time. So he had, I think, like, almost 900 hours or just over 900 hours combined of sick time and vacation time. So you know, he didn't we never had to worry about short term disability or long term disability. And I say we never had to worry about that. And I'm thankful we didn't have to worry about that. But that also means that the cancer journey was only four months. Right? You know, we had enough money and savings to cover the out of pocket expenses. He quit his part time job. And we were okay with that. Because we had enough money in savings. And we could pay our deductibles, we could pay everything that we needed from what we had saved. Because he only survived four months of treatments, have we gone into another calendar year, I would have been very happy that he would have been here for longer. But the the financial, the financial aspect of it would have would have definitely played its toll. And at the time, and technically, I guess still the time. We live in the state of South Carolina and there's there's no presumptive cancer laws. And so Josh is Josh who was that's one thing that weighed on him heavily was that, that there wasn't going to be anything that he could give us after he passed away. There was nothing that you know, there was no presumptive cancer laws. So we were not going to have any financial support from the state. His death would not be constituted line of duty. So, you know, shoot, my daughter wouldn't get a free college education in the state of South Carolina and all that. And so that part definitely weighed heavily on him. His way weighed heavily on him quite a bit. But thankfully, he joined midway at the right time where he was still part of the old school retirement. So there we did, we did end up getting something from his retirement after every pass because they met or medically retired him but yeah, just like the idea of, of he put in 25 years across, you know, three different places as a firefighter and 17 here in South Carolina at midway and any and nothing, you know, like nothing.

Jerry Lund : Yeah, I honestly I wish I understood more of the, you know, the cancer preemptive stuff than I do. And like you said, most states don't have something in the state diamond. They have, I think four types of cancer. But it seems like it's just something that's on the on the books, but they don't really ever want to see any claims against.

Lillian Carney : No, no, they do not. Absolutely not at all. Not Yeah, so actually most states do have something, righ? But something like you said your state has four types of cancers. And trying to get anything to pay out that way. Is is ridiculous. It is good to see we are there are several states that are adding more types of cancers in there. And I have been fortunate to work with the it's what we're calling is the South Carolina Firefighter Cancer Coalition. And it's several organizations throughout the state of South Carolina, that have come together to push for legislature in South Carolina. We push for it last year. And so I was on the committee to help formulate what the coverage would be what the requirements would be, and it passed the state or it passed the House to pass the Senate last year. But due to COVID, and everything else going on, they passed it but the funding has not been officially set yet. And so it was signed by the governor the end of last year. And so it's worked into this year's budget that will start July 1, but they're still waiting for their final sign off. So it is not official yet in the South Carolina, but fingers crossed. And, you know, six, eight weeks away. South Carolina firefighters will be covered. And the great thing was South Carolina's coverage is that first off, it's it is one of the better builds that I've seen out there. It covers most types of cancers. And it covers our career and our volunteer firefighters. So [that's huge]. Yeah, yeah, yeah, I'm I'm very, I'm very excited to see this one officially happened on July 1. So we're just waiting for the for the state budget to be finalized and to have the back and forth of you know, it'll being done. But it's hopefully going to be in effect in just six more weeks. So that would be huge for South Carolina firefighters. Yeah,

Jerry Lund : yeah, that's Yeah. So tell us a little bit more about the Carney Strong Initiative.

Lillian Carney : So we are, we have five board members. Tonya Cronin or Tonya Herbert is one of them that Responder Wipes and Christine Powers. Those are there are cofound, are the co founders, Josh, his cousin, Christine, myself. And then actually I mentioned Josh, his best friend, Dan, that they grew up together. And they started as volunteers together. Dan is actually a firefighter in Connecticut. And so he is one of our board members. And so is Nick Magneto, who is he's the one who runs brothers helping brothers. So we are a nonprofit organization. And we have a very easy, simple grant, Grant Request Form that you can fill out and we try to push more for the rural suburban smaller departments that have a harder time getting funding to to run their departments. We know that everybody needs help. We know that larger departments need help, talking to a couple of Detroit city firefighters a couple of years ago, and that's just that settle l by itself, right? So [many levels]. Yeah, yeah. So but we tried to focus on the smaller the rural, the suburban, the volunteer combination departments. And so we pick a different department every month, and we ship them the the supplies that we get from our product partners. And so that we do every month and then we have a couple of random donations. We do have a sponsor department program, where if you wanted to donate X amount of dollars, then we put part of it into the Carney Strong fund to pay for the monthly departments. And then we also will send a smaller, small smaller bundle of decontamination supplies to the department that you're sponsoring. But one thing that is that came out of nowhere, and I look forward to it every year is what we call Decon Day. And Decon Day is the anniversary of Josh's passing. I had a one random box of responder wives that I wanted to donate to a sister station I guess of Josh's department. And a friend of his so I called the battalion chief down there and I was like, Hey, I have this random box of white. Do you want it? He said sure. And I'm like, Okay, I'll stop by and drop it off in a couple of days. And being able to just make that random case donation to this one department was and like they were using baby wipes. And they, you know, didn't they don't they didn't really have much for supplies and they didn't have the funding for it. So to give them one taste, and to see to see like it actually made an impact and how much they appreciated just as one case turned into I want to donate to so many departments all at one time. And no, we can't afford to do our monthly department donations. But we can afford to spend a little bit of money and at least give them a couple of boxes. And knowing how much I got out of making that one random donation, I knew that we have friends and family from across the country that all I had to do was say, hey, you want to stop by and make a donation if I send you the boxes? I mean, I can't even tell you like we have so many departments in Pennsylvania because one of our volunteers, Chris Mallory, who used to work with Josh down here and in South Carolina, he is a huge supporter of current strong and he he's a firefighter up there, and he pushes Decon and he will talk to anybody who will listen and his father just recently passed away from firefighter cancer and his dad was on the job for so many years. And anyway, sorry, I digress there for 30 are good. Anyway, so we started de Conde right. And so we reached out to some volunteers and and hooked them up with some departments. And we made I think, 25 donations in 2018, 30 in 2019, and we were going to do so great and 2020 and then COVID, right? and, you know, COVID screwed up everything. I mean, it just did the party conduct, right, but I found a way around it. And I am part of a Facebook group called Wife Behind the Fire. And it is firefighter wives. And I'm still I was part of this group, this Facebook group before and a good friend of mine never met her before but Val runs it and I said "hey, I need I need to get wipes out there. I want to do with Decon Day and I want to have the wives give it to the spouses. Like, "Can we do this?", and she was so on board with it. So we ended up I reached out to them in the group and said if you want to give your spouse what for him, and you know for him in his ships, because we couldn't do that many so good for the whole department just fill out a quick like send me an email like fill out this form and, and so we ended up on Decon Day reaching out and sending I think it was a 65 total different donations that we sent out where fire wives gave it to their spouses. And so that was that was perfect. Because we didn't have we didn't have to worry about COVID we don't have worry about not being able to go the fire department. We also worked out pretty well too. And we were able to donate some cases of wipes to some departments in California. We hooked up with Scott Jenny who is the state director for SGSN for California and he helped us make a couple of donations to ironically we also sent wipes to his wife so that she could give them to him as well. Yeah, so it's just another way to be able to to get through what would normally be a miserable day. So we were able to, I was just gonna say we were we were we're able to continue continue on and still do Decon Day even though it was COVID and still make an impact and still share Josh's story and still share you know how important Decon Day is so it was a good way to get through Decon Day I don't know how we're going to top it for 2021 to be honest,

Jerry Lund : we're just going to get bigger, we're going to get bigger. So it's up is it October 27? 

Lillian Carney : It's October 19 

Jerry Lund : 19th Okay, so October 19 what how do we get this passed and legislation to make like put it on the day we have every other kind of day on the calendar like you know don't a day right day and five day and why not? Why not Decon Day let's how do we get...

Lillian Carney : It's already because [yeah], that's what it is. How do we get that started? We need to get the movement going here folks listening right we we we need to, October 19 is Decon Day, a good day to be reminder and how important your decon is how important it is to be prepared. And flipping that coin how important it is for you to be in family photos and how important it is for you to have a current will and how important it is for you to have those conversations with your spouses about life after death and and being prepared for it. Nobody ever wants to talk about it. Nobody ever wants to talk about death and funerals and and I would have had no idea some of the choices that Josh wanted at his funeral and didn't want to this funeral. He even though he did come to the realization that it was firefighter cancer. He did not want trucks, he didn't want engines. He did not want our daughter and I to go through that experience. I had no idea. I would have had no idea that that's not something he didn't want to have happen. And he wanted Enter Sandman Metallica to be playing? Okay, well, that's a conversation we had in advance. Right. But we only had that conversation because because we knew we knew that, you know, the future meant that he was going to that he was going to die from cancer. Why? And so it's important to talk about these things. 

Jerry Lund : Yeah, so I was just gonna ask you why why don't we, why do you think we, we brush this conversations off?

Lillian Carney : Because we're afraid of those conversations. People are afraid to talk about death because it's sad and it's scary. And you're not going to die until you're 80 you're not going to die until you're much older. You're, it is it's it's scary. Nobody wants to talk about it because well, you're going to be here tomorrow. So why don't we talk about today? Let's just talk about tomorrow. Yeah. And, and for me, 2017 was was like my 2020 or anybody's 2020 I should say so. So in May, I was at a wedding in Long Island and my dad called me and told me that my mom had passed away. Ahm, unexpected, not like there was no there was it wasn't supposed to happen on that, that random Friday. And it did. And she was only 59. And I was like, wait, this is this, this isn't the way it's supposed to happen. And they didn't talk about, you know, those types of things. And and then a month later, he's diagnosed with cancer. And it's like, wait, okay, so now I have my mom who passed away in the blink of an eye that we was not expected. And now I have four months of watching Josh deteriorate and and then eventually die. I don't I like people always ask like, at least you had time to prepare. Yeah, but then you're watching it. You're watching it happen, but but at least we got to talk about it. At least Josh and I did have those conversations we did say, even though he had a will. It was 20 years old. So let's go ahead and let's get a new will. And let's have it encompass, you know, our daughter who was 16 at the time, and and let's talk about these things. And let's find out how you know, who you want, in lieu of flowers and your obituary? Like, do you want it to go to a specific organization? Or do you want flowers instead of your service? They're not easy conversations. [No, definitely not]. They're, They're definitely not your not easy conversations. I think for Josh and I, it was easier for us to have the conversation because we had Father Will. And Father Will is the chaplain for midway fire rescue. And he made it easy because he drove the conversation, right? So he did drive the conversation of Josh was there for the planning of his entire funeral, his viewing and his funeral, he was there for all of it, he chose to not participate in some parts of it, he didn't really care. He doesn't care what you know, what, who reads what he just, you know, he didn't care about that stuff. But But we did have that guidance from, from the from Father Will, from the from the chaplain who did help with it, but it is people are afraid to talk about it, people are afraid to talk about, you know, how it affects them and, and their feelings around it. And I am, I'm not going to lie I have, I have garage beer, that's what I'm going to call it, I'm going to call it garage beer. I have garage beer with some guys from the fire department still, you know, three and a half years later, where, you know, stop by after you know, after work or on the weekends? Or when can you stop by and we'll just you know, sometimes we talk about emotions. And sometimes we don't sometimes it's just good to just not talk about anything, but but you have to talk about these things. You have to talk about it because it's okay. You know, that cliche tomorrow's not promised. But...

Jerry Lund : You're right, right. I think some for some, if we feel like we talk about it, and we're actually putting it out there that it's going to happen, or happen sooner than you know, than we want it to. But it's going to happen. You know, I talked a little bit about to my wife about my things, what have my feelings and stuff like that. And she doesn't want to hear it. I mean, that makes her upset. And yeah, right. It's upsetting. It's upsetting.

Lillian Carney : Yeah, but, but, yeah, but it's going to be even more upsetting when you don't know the answers to those questions after. After, you know, you've after the person has moved on.

Jerry Lund : Right [passed away] No, I mean, the toll that I must have taken on you and his department fires, just, you know, the just like the the mental health portion of it is just how to be huge.

Lillian Carney : Yeah. Father will? I mean, I'm telling you, Father Will, I forever will be in his debt. Yeah, so I had during after Josh was, after Josh shared the shared with the news with the fire department, there was a couple of guys that I had a group text with them. And whenever I needed anything, whenever we needed something, whenever Josh needs something, I would send a text message to these two guys. And they would say we'll get back to you. And then 20 minutes later, they would tell me, okay, this is this is who's picking up Josh and taking, taking him to his appointment, so that I didn't have to miss work. Or this is the guy who's going to come over and mow the grass. It didn't matter what it was. But, but that took a toll on that on those on those two guys too. You know, I mean, because they became my rock. And so I mean, and then having a chaplain at the Firehouse that was huge. I will tell you for my daughter. She was you know, she was 16 and she was actually transitioning from her regular public high school and she was actually going to go The Governor's School for science and athletic, she was going to live two hours away from home, it was going to be, you know, it was going to be crazy. It was a rigorous curriculum she was going to be was, it was going to be a lot. She wanted to go. We had talked about her not going to the school and just staying home. And it was, you know what, I'm gonna make you an appointment with a therapist. My child, my stubborn 16 year old daughter, just like her father was like, "Why do I have to go talk to somebody, I don't need to talk to somebody  no, I don't", I'm like, just go meet, meet this person sit down with them one time. If you don't want to go back, you don't have to, but just go talk to somebody who's not me, that's not your dad. And you know, and my child's stubborn like she is if I'm going you're going to, you know what I will, I promise I will go to see someone after you go after I get you settled and taken care of. I will talk to someone we see the same therapist, it's three and a half year almost four years later. And we both just see him upon occasion. Because it is important, you need to have that somebody outside of of your circle that is going to be objective, even if you're just rambling on about nothing, you need someone else to be there for you. And, and I'm very thankful that the fire department has Father Will and there's some other resources that I know that they have brought in, that's helped out and in. And even now, I mean, like I said, I still like my garage beer anybody. I don't care who it is. Talk to me, you know, if you're struggling, you know, you know, don't be afraid. Do not be afraid to engage me if you're struggling with it. Because chances are I'm having a similar feeling and it's okay. It's okay to talk about them now. You know, it's okay to it's okay to tell them number one, when they're alive that you love them. That's okay. You know, it's okay. And it's okay to talk about them and to and to and to be upset about them and cry about them later. It's, it's, it's all okay.

Jerry Lund : Yeah, I think a lot of us struggle with what's okay, I guess, or the stereotype. Yeah. So that you get put on what's okay, and stuff like that. Of course, I'm a lot more emotional now than I ever used to be. But, you know, that's going through a lot of different things. And just being real, right? We think we find ourselves tucking our emotions down, you know, too far, often. And I know how I have in the past about different things. And then just trying to find them again, if that makes sense. It just be there and too far. And then you're like, no emotions, which is worse. 

Lillian Carney : Yeah.  I am, I have, I've always been an emotional person I wear I wear my emotions on my sleeve, I cry about the littlest thing. And it's not a bad cry. It's just I get you know, my I get some eye sweats going. And it could be something as simple as you know, talking to you right now, I have a I have a picture frame on my desk that rotates your pictures. And I can see this one picture of Josh and Shayla yesterday and I was completely fine. And I just saw just now and it was like, oh, okay, I'm talking about him, she got a little emotional, and it's okay, I'd rather I'd rather get them out than hold on to them. Because when you do lose them, they still surface up later, you know, and then you lose one you're losing, you know, 15 more on top of it, and it does build up and, and then it all just flows out. And, and it's okay to talk about it. It's okay to talk to someone. It's okay. I say that a lot. That's been like my go to is if we say okay, [yeah], you know, we say okay,

Jerry Lund : Yeah, I do like the garage, the garage beer idea. That's, that's great. I mean, it's great to, you know, just have a way to visit in in a casual casual manner.

Lillian Carney : It's been and they'll tell you it's been garage coffee, too. It's just easier to call it garage. Garage. Garage talk. It is. And it's you know, it's just a friendly, welcoming, just sit around. And

Jerry Lund : Yeah, that's great.

Lillian Carney : Talk about nothing or talking about something. It's okay.

Jerry Lund : Alright. Are you doing some educational stuff as well, you're putting out educational material and the website and stuff?

Lillian Carney : Yeah, each one of our monthly donations we have what we have a jump drive that is full of white papers and stuff from the National Volunteer Fire Council and the Florida Firefighter Cancer Initiative and all these different organizations that that that have information out there digitally. We have that on a jump drive, it's full. And then we also have an educational packet, which is a lot of the same stuff that's in there, but it's just a paper form because you know, you have paper in front of you right now some people just like to scratch paper. So we do share that, with each one of our monthly donations. As well as one of the things that we do give away is access to online training from firefighter cancer consultants. And he's got a couple of different ones about on CB con, and Austin's econ and resources and stuff that are out there and available. And then we do have a lot of it on our website, Arnie strong.org. That is out there for anybody who wants it. And it's and it's, we don't have everything that's on the jump drive on the website, just because there's so there's so much on the jump drives, but would you try it, we try to share, you know, information as much as we can, you will probably never hear me talk about unseen decon because let's face it, I don't know what I'm talking about. I just know that you should do it. Right. So you'll never hear me, you'll never hear me talk about it, just do it. Do your job. You know, get your decon do your job do your decon. [It's not cool] I'm slowly learning it, but I don't know. It's not it is not it is. It's an it's not cool. But ironically, I have in our house, it's actually one that it's we have a picture of Josh, walking through a house that I don't know if it was for training or what but there's a photo of him walking through the house and it's dark, and it's smoky. And it's just, you know, like he's in his gear, and he's carrying his helmet through the house. It is an awesome, awesome photo of him. And this was from probably 15 years ago, we had it blown up and framed and it hangs on the wall in our house. And then cancer happens and you're like, Oh my gosh, we have this photo, we have another photo of his helmet from a training burn. That's just gross. It's like we blew it up and hung it on the wall. You know, and I'm not taking this out, they're still hanging on the wall, I will not take them down. Because you have to learn somehow, you know when it's like so it's that reminder for us that though you think it's cool?, it's, it's, it's really not dirty is dirty is not cool.

Jerry Lund : Isn't it? I'd like to see there's a chain a small change in the fire service. And maybe it's bigger than I think I'd start seeing more people posting about it. I know, culturally, our fire departments making a bigger change. I see guys washing their gears more more often. After trainings and you know, in that stuff, I'll be honest that I probably hardly ever wash my gear up until recently. You know, yes, yeah. It's just, I don't know. Maybe it's just a huge lack of education in there was a gap or something that in the fire service? I don't know. Or maybe it wasn't just like, that was a badge of honor. Let's be honest. In times during it, there was a badge of honor, like to look your hair to look cool. But I have like, you don't want to look like a new guy. But I haven't, you know, right here. Because then maybe people will look at you say, Oh, he doesn't know anybody. Doesn't know anything. Because he does...

Lillian Carney : And that was that was Josh's shoe. I mean, he you know, man, I don't know when he started talking about decon if he ever really did. I know in the more recent years before he passed away, they they did start, they did start pushing for, for cleaner, healthier habits and choices and that kind of stuff. But in the beginning, no, he never. [Yeah] He just didn't. You know, he was definitely old school mentality. I mean, he has a huge mustache, you know, I mean, it was, he definitely had the old school mentality. But you do see a lot of the departments, a lot of the states, what we're seeing now, or what I'm seeing and reading is that they're recruit classes. They're, they're learning it straight up in recruit school, and in the academies and, and they are having people come in and talk I've actually gone in to talk at Josh's department a couple of times to some new guys just, you know, just to talk just as they're gonna be like, Hey, listen, I'm not gonna tell you to do your decon. But I'm gonna tell you what happens if you don't do the decon, you know? Not that not that it's not gonna happen anyway. But there's just there's so much out there that that you should be doing that you in. And at this point, it's 2021. I'm sorry, but if you are at a fire department, and you don't know that you have a higher risk for cancer, you should not be in the fire department. That's all I'm saying. [Yeah] You know, I mean, it's 2021 at this point, it's all over everything in the fire service. And...

Jerry Lund : Yeah, yeah, [yeah]. Yeah. Get I'm getting a little choked up myself. Because on Friday, I have an appointment to go and have my face looked at again and be checked again. And I was like, my wife used to work for it. Yeah. So she's, she knows and we're trying to keep on top of there's definitely going to be some some spots. It'll have to be removed deeply and stuff like that. But it's, yeah. And it's a lot of it is around my face where my masks always set and sealed and stuff. And that's basically the areas I've been struggling with, placed on my back where my air pack sits and puts the pressure up against my back. And so this contact areas, you know, that we know are one of those trouble spots for us. So...

Lillian Carney : But you're staying on top of it, right? You're going to your appointments, you're having this anxiety, I understand...

Jerry Lund : Yeah, yeah. Yeah. It's, it's like, right, you want people to learn from you. I mean, if we can share things like the podcast and shared these amazing things that you're doing, [right?] Um, you know, just work incredibly hard on behalf of Josh and to try to get this education out. And I'm sure he's, yeah, he's there cheerleading on, you know, every step of the way. And I certainly...

Lillian Carney : Yeah, I was always the outspoken one out of the two of us. He even though you know, people think he people think he was loud at the Firehouse he was I have the two of us I was definitely the loud outspoken one. And I think he's probably only complained about the whole thing was, is that why just use my last name. But you know, this guy, he doesn't want this one. Yeah. Just that he's yeah, he was definitely he was definitely a humble one for sure. But, but yeah, you know what? I will, I will talk, I will talk if somebody is going to listen, then I'm going to talk because that means if somebody's listening, then then they're going to hear one thing. And if they got one thing out of the conversation, then then that's the that's what matters. Even if it means go to the daddy daughter dance, you know? I mean, because because that's a memory that might my daughter is going to have forever. She's not going to have those other memories, you know, after he passed away, so she's got the memories that he got her dance. I mentioned the daddy daughter dance every single time I talk. Because it's very important that you stubborn then go to daddy daughter dance. It's not about you. It's about them.

Jerry Lund : Right? It should be a shirt made up about that. It's about you, not them, or Whoa,

Lillian Carney : No, it's not. It's not. Not about you. Go the daddy daughter dance take the picture and smile in the picture. You know, because so many firefighters don't need men in general. I don't like to be in photos. I don't want to be in photos. Well, guess what? If you if you make a face in every photo after you're gone, that's what people see is that photo every single time you're making a you know you're making a face or turning your head or pulling your hat down. So be in the photos. The photos aren't about you. They're about the other people that get to enjoy them. And remember you after you are gone.

Jerry Lund : Yeah, no. [Take the photos]. Yeah. Great. How can people support you in what you're doing? What's the best way?

Lillian Carney : Well, there's. So the best way with all of our options is definitely carneystrong.org. Our website, we are on Facebook Carney Strong. We're on Twitter and Instagram. But definitely our website is the easiest way. We'd love donations of all kinds. You know, we're definitely not picky. See it? Yeah. Yeah, it's there. We do. We do have a challenge coin that is for sale on our website, carneystrong.org. And we do have T-shirts that are available through bonfire, but it's also the link to the to buy the T-shirts is through carneystrong.org I'm gonna say it one more time. Are you ready? Yeah carneystrong.org. I feel like I've said it a couple of times. But carneystrong.org

Jerry Lund : That's great. We'll put it in the in the show notes as well. And I really want people to, to join in on Decon Day, and let's see if we can get this running as a national holiday. We have other other holidays, why can't we have one on that day? for that?

Lillian Carney : I'm gonna keep doing it. So I mean, in my world, it definitely is a national holiday for sure. 

Jerry Lund : But if we can get that we other businesses to do it, like, you know, Enduring the Badge Podcast is recognized as a holiday and these other businesses, I think it will really catch on.

Lillian Carney : I think so. I mean, I mean, it's already it's already caught on pretty good. We, we we are hoping to expand it out. We're hoping to donate more than just the wipes and the educational material that we have. But we'll see how it goes. We have this like little quiet indirect thing that we've donated to I think 35 or 36 states and we're only thinking, can we donate to all 50 states within the next year? like can we could we do it? Maybe? Yeah, we have. We have a lot of outstanding grant grant requests that we have that we want to fulfill. And so but you know, we just have that Pacific Time Zone, that mountain time zone that we're currently struggling with, you know, it's it's, it's more wildly in departments. And we understand that and we have definitely donated to land departments and firefighters. But we're working on it. So if you listen, if anybody's listening from like, I don't know, Idaho, Wyoming, Montana, Nevada, Arizona, New Mexico, Alaska, the Dakotas, you know, I mean, like, yeah, we actually have made a couple of donations to Utah already. But we'll make more. I mean, we're totally ready to make more. But...

Jerry Lund : Tonya sent some, Tonya sent me some some products. I know, they're awesome. And I love them. Yeah, and probably will be out of them by the end of this wildland fire season for sure.

Lillian Carney : Which is good that you're going to use that you've already started using them and that you plan on using them and that they didn't go in a closet somewhere. 

Jerry Lund : Right, right. Agreed. Yeah.

Lillian Carney : That's and that's our, that's our thing with like, when we make donations is we want you to send the grant request through the website, carneystrong.org. Because that means that you are going to use it, you know, we we try very hard not to just donate to a department that that has not reached out for the help. Because either you don't need the help, and that's okay, or you're not going to use the product. So we definitely want to reach out to those departments that need it. That one it that, you know, otherwise, we we know, several departments that, you know, specifically that are struggling enough as it is to keep their lights on and put, you know, gas or diesel on the trucks because they couldn't do those extra fundraisers that they always have been last year. So [it's true, that's true]. You know, and even into this year, they're, you know, they can't do their and I know, it's, you know, some people joke about it, but they can't do their pancake breakfast. And they can't, you know, do their, you know, their pig fries and the way that they made money to, to fund simple things like, you know, buying old here, right, forget about new here. So,

Jerry Lund : Yeah, I think that's something that they kind of got lost. I actually, there's a lot of departments near to me that like have fundraisers and stuff like that. And I didn't even think about with all the stuff going on that they haven't been able to do those major fundraisers that they do each year. Right. It's got to be incredibly hard on them.

Lillian Carney : Yeah. So yeah, now we're rolling into another year and yeah, anyway,

Jerry Lund : Yeah. So before I let you go, I feel like I when I asked this question, quite often, I feel like I know the answer. But I'm asking anyways, because I always in the show this way, what impact do you want to make in the world?

Lillian Carney : I want to make I want, I want to, I don't want to see another I know what happens, but I don't want to see another fire wife, or, or another child, go through what my daughter and I went through at his funeral. She was handed his helmet and I was handed his flag. And to this day, it's one of the worst moments ever. And I just don't want that for anybody else. So so my impact is going to be for the fire family. I am hoping that the more I talk, the more I ramble on, the more the more fire families listen. Or firefighters listen and share with their families and realize that they need to start taking a proactive approach now, no matter how old you are, and I don't I hate the excuse of "Well, I've been in the fire service now for 20 something years, so I'm not gonna get cancer anyway", Well, no, do your decon, you know, your whatever you're doing now is the old salty guy, the young new kid is watching every your every move, so, so do what you need to do to help him, you know, to help the new guy. Anyway, so I just hope that I am making enough of an impact to change a couple of lives out there in the fire service because firefighter cancer is I don't want to say preventable, but you can definitely reduce your risks. And so, right. I hope somebody listening that starts something new today.

Jerry Lund : I'm sure they are and I really appreciate it. I just want to is there other places that people can contact you that other than the website? Is that the best place?

Lillian Carney : So there's the website. This is the best place to find all the information. But we have you can email at info at carneystrong.org. I always like to say info at carneystrong.org, so the carneystrong.org because org because it's L-I-L-L-I-A-N and nobody ever gets it right. But anyway, so you can email us at info@carneystrong.org we're on Facebook, we are on Twitter, we are on Instagram, it's all Carney Strong or Carney Strong Initiative. So we are out there in the world. [Great] And if you're in South Carolina, we're going to be at the fire rescue conference in next month. And we are probably going to be walking around FRI the end of July but we are not going to be at FDIC.

Jerry Lund : Is that, is that kinda [Yeah]. When's that happening?

Lillian Carney : That's the beginning of August. Yeah. We were gonna we were gonna go because it's a great it's a it's a first off, It's a great experience for everybody. [Sure] Ironically, Josh, Josh isn't going to FDIC and his first night, his first day of classes that night, I talked him on the phone and he said to me, I can't believe you've never let me come here before. And I'm like, "Whoa backup, buddy. What do you mean, I've never let you come here before?" You know and so from the training aspect, he got a lot out of it. But from from the Carny Strong side, it's a great place to have to make the contacts to meet people in the industry and see what's happening and see what's changing and cancer prevention in the fire service. So yeah, but once they move the date to the beginning of August, we were unable to attend.

Jerry Lund : That's rough on it. I appreciate your time. Lillian. Yeah. Next year.

Lillian Carney : Yes. Thank you, Jerry. Yeah, I do appreciate I appreciate you having me on. Thank you.

Jerry Lund : Yeah, it's been an honor and a pleasure.