The VA Said Ulcer. It Was Cancer. - Matt Roll's Multiple Myeloma Story

Army veteran Matt Roll spent more than a year searching for answers after persistent pain was repeatedly dismissed as an ulcer. Trusting his instincts ultimately led to a diagnosis of multiple myeloma at just 41 years old.

In this episode, Matt joins Veteran Cancer Talk to discuss his military service, concerns about toxic exposures, the road to diagnosis, undergoing a stem cell transplant, and what life looks like today while living with cancer in remission.

Matt also shares the critical role his wife and family played throughout treatment, the importance of advocating for yourself when something feels wrong, and why veterans need to pay attention to changes in their health.

This is a powerful conversation about resilience, family, survivorship, and the reality many veterans face when navigating cancer.

If something doesn't feel right, keep pushing for answers.

You are your own best advocate.

Transcript

SPEAKER_00 0:00

Do you uh experience any burn pits over there?

SPEAKER_02 0:02

Uh 2012, I was just outside of uh Kandahar, um where there was other other kinds of toxins I was exposed to. We just drank it and didn't think anything of it. We weren't told otherwise, you know.

SPEAKER_00 0:15

Welcome to the Veteran Cancer Talk by the Veteran Cancer Network. I'm your host, Ashton, and today I'm joined by Matt Roll, Army Veteran and Multiple Myeloma Cancer Survivor, along with our co-host, Casey Croner. Welcome.

SPEAKER_03 0:26

Hello.

SPEAKER_00 0:27

So uh, Matt, go ahead and just uh let's get right into it. So Army veteran deployed to Afghanistan, correct?

SPEAKER_02 0:34

Yes, ma'am. Uh I've been to overseas and OEF twice um in 2009 and then 2012 was my last deployment.

SPEAKER_00 0:43

Okay. Do you uh experience any burn pits over there?

SPEAKER_02 0:46

I was uh more so on the first deployment back in 09. Um it was a little bit more prominent, but uh 2012 I was just outside of uh Kandahar, um where there was other other kinds of toxins I was exposed to. So um not so much. What kind of toxins? Oh well, there was the the water for one, the the um water buffaloes that were over there, um, and then you know, whatever else was in the air that we didn't know of at the time that we just kind of went with the the flow of things. So um I wish I could be more specific, but that's that's kind of where I'm at right now. Kind of still unknown.

SPEAKER_00 1:26

Yeah, I know. A lot of people were uh talking, you know, about the plastics and the water bottles and and everything. I know on my deployment, you know, when I was out in Iraq and Afghanistan, we had pallets of water, you know, in uh in plastic with the camo netting, you know, under you know, under it and everything. And I remember having to go through and like slice through it because they were saying that the water was dangerous to drink, and then they gave us new plastic water bottles. Go figure.

SPEAKER_02 1:47

Well, that's absolutely correct. You know, I you know, majority of the water we did drink did come from water bottles that had probably been sitting out in the hot heat sun for you know in a connex for who knows how long that you know the plastics, like you said, from inside the bottle. We just drank it and didn't think anything of it. We weren't told otherwise, you know.

SPEAKER_01 2:07

Yeah, yeah. And you bring up a good point about those water buffaloes, you know, they're everywhere out there in training, uh, you know, stateside and everything. I've never seen someone clean them at all.

SPEAKER_02 2:19

That's a valid point. I now you say that I don't think I have either. So you know, it's for much as much as the military we are at clean in and details and stuff, like that's a valid point. I've never seen, I've never been on that detail, so yeah, I don't know.

SPEAKER_00 2:34

I know they put the iodine tablets in there that you know make it kind of turn that different color, so it always looks like you're drinking rust. Actually, you might be drinking rust because they don't you don't know if they clean the inside how they how they have that in on the inside, but that brings metal toxins and everything, all sorts of stuff in your in your body.

SPEAKER_02 2:49

Yeah, absolutely. And you're bringing up a lot of good points. I didn't even think about like drinking rust water from a water buffalo and nobody's cleaned it in who knows how long. So that's yeah.

SPEAKER_00 3:00

Probably back in the Vietnam era when it's brand new.

SPEAKER_02 3:02

Yeah, that's probably the one and only time that they PMCS'd it, right?

SPEAKER_00 3:09

Absolutely. So I mean where were you uh where were you stationed stateside?

SPEAKER_02 3:14

Uh my first duty station was Fort Bragg down in North Carolina, and then um my last duty station was up at Fort Lewis up in Washington. So I got to see both coasts pretty much, yeah. Like it was pretty cool.

SPEAKER_00 3:27

I want to say they uh they they had me kind of sticking a little bit everywhere. I was uh out in Camp Lejeune, so I was East Coast. I did go to Fort You know Fort Hood a few times though, and that was um, you know, that was nice. But then we also had uh what is it? I was out in California. But you know, the thing about you know these different military bases is that when you're out there, uh they have all these different types of contaminations, gas chambers, all sorts of that, you know, just kind of everybody's kind of breathing it in. And so I'm always interested uh to kind of hear everybody's thoughts. Um, you know, one, if if the contaminations that are leaked into the the water, you know, it seeps into the soil. And do you think that you know anything that you've experienced might be you know impacting your your current health diagnosis? Obviously, burn pits is one of them, but you know, what about those other toxins?

SPEAKER_02 4:10

You know, I would I would venture to say that that's that's definitely has something to do with it because I was a single single man living out at Fort Lewis and um stayed in the barracks. So the water that came through the showers, the water that we drank out of the faucet that was connected to who knows where, that you know, there could have been any kind of of uh exposure. I I do believe at one point when I was out there there was some some part of the base that was uh put on alert for a possible contamination in the water. I I belie I don't I I don't get into too much detail on it, but um but you know, it's that kind of stuff. They just kind of make it seem like it's just so natural, you know, like all this barracks or you know, this part of the base is having some sewer issues or water issues. We'll just, you know, we'll just keep going and say just make sure you just make if it's a different color, don't drink it, or you know, it'll be okay. Some you know, some ibuprofen and water, you'll be fine, right?

SPEAKER_00 5:11

Absolutely. Actually, I'm I'm always interested because the I know the barracks that we lived in, you know, like part of them, they had like asbestos. I think even the ones across the the street from us that the infantry was in, uh, they had asbestos, you know, coming to you know, find out we're sitting there living in asbestos, even, you know, as late of like 2008, 2009, you know, and further, that just never was condemned that they were living in.

SPEAKER_02 5:31

I yeah, I the the barracks that I was living in when I was out there at the end, I would say was probably built probably back in probably Vietnam or before, because it was just all you know solid concrete. You look over to the right and they're built, they're trying to build up certain areas of some of these bases, but then like what at what cost to the older ones are they keeping the maintenance, the upkeep, you know, making sure that things are sanitary for us to to you know live in or or habitat in, you know, and uh and then out, you know, even out in the field, like uh training exercises, you know. I I don't know, there's more water buffaloes there, there's more pallets of water there, you know, where did those come from? You know, what what what have those been exposed to that went into our bodies? You know, it just once this diagnosis happened and I was told that you know it's it's a potential from exposure, toxic exposures due to burn pits, it really started to open up my mind to look into more of like, well, what has gone into my body while I was, you know, in the service, as in what kind of shots did I get? You know, what you know, we all got the same stuff, so why did it affect me maybe different than it affected somebody else? Was there something else that I got or received uh shot wise, uh medically wise, training wise, you know, that somebody else didn't that decided that for for me for some reason it was gonna turn itself into a a cancer? So there's been a lot, lot of uh questions with that, uh research with that, and you know, it does come back to the exposures from the toxins that I was around, it's it seems like is is what the main uh reasoning behind why it's it's come out. Um are you guys familiar with the TERRA from overseas? Do you guys does this ring a bell to anybody?

SPEAKER_00 7:36

You're gonna have to go a little bit more on that.

SPEAKER_02 7:38

Okay. Uh the toxic exposure registration, or I can't remember the exact what the acronym stands for, but basically what it is, if you were ex if you were deployed to a certain uh demographic in like Afghanistan, Iraq, anywhere in the Middle East, they set up a guideline to say that if you were in this area, you were automatically exposed to these chemicals, these potential hazards. So when I got out and came home, I called and registered. And due to where my orders took me in Afghanistan, I automatically was enrolled in this TARA program, which means that I was exposed to these certain toxins. So basically it's like they're trying to cover themselves because they knew we were already going to be exposed to these things.

SPEAKER_00 8:29

Um, which so is it more than just a registry? Did they um did anybody send you for any type of testing or you know, to, you know, basically if if something kind of pops positive on your uh on your health background, you know, when you're going to see your primary care, that they say, okay, you need to go for some sort of sh, you know, additional screening, or was it only the registry?

SPEAKER_02 8:47

Well, I for me, I think because of how things happened, I registered with it after I was having issues. I went through a um, it was like a phone call with the I don't I don't know if it was a nurse or a doctor. I went through all the questions of a questionnaire. And within I mean within a month, I was um seeing an oncologist. So I don't know if that kind of overshadowed me going through the rest of what the VA or the uh medical team needed from me, but it was a pretty it was a pretty quick connection when I got diagnosed. The VA connected it right to that because I had been registered through the tear out. So it kind of worked out worked out pretty well in that sense.

SPEAKER_00 9:36

Yeah, I'd be interested to to hear, you know, what prompted you to go to your, you know, practitioner. You know, did did you have certain symptoms that came up that you know were just a little off, or was this just an annual screening that, you know, they were like, hey, this looks kind of a little funky.

SPEAKER_02 9:51

It was like December of 2023. Um, I was having some pain in my right, like rib cage at the bottom of the area, and I kind of thought maybe I had broken a rib. So um I went to my primary care doctor at the VA and expressed my symptoms and concerns, and um we came to the conclusion that it might be just an ulcer, and that's where it was at. It was just said to me that this could be an ulcer. Put on some medicine, went about my way. Well, I went about a whole year kind of back and forth feeling this way, just thinking it was this ulcer or December of 2024, excuse me. Um, I went back last, no, it was 23, December of 2024. I went back. I went to the ER because I was having more pains, and this was a year post me going to the VA doctor and telling them, and I told them what was going on, is having this bad pain. I think I might still be having a broken rib. And they looked at my medical records and said, Oh, you're might just be an ulcer. They did an x-ray, didn't find anything, sent me on my way. Well, Christmas rolls around, and I told my wife, I looked at her, and she she could see that I'm just miserable at this point. Like I'm in pain all the time. I'm super tired. I have no energy to do anything. And she's like, something's definitely not right here. And I didn't feel like I was being heard by my um primary care doctor at the VA. So I decided to go see a private doctor that my wife actually had grown up with in our our local town. And um, he got me right in. I explained to him what was going on, and he said, That doesn't sound like a broken rib to me. Let me run some more tests. He ran a panel of uh blood tests with don't ask me because I don't I don't know exactly what it was, but just the basics, and then he threw in some other tests that he thought that he needed. Basically, I got a call from him on a Saturday. It was a Saturday. That's how you know that's how much this gentleman was on it. I saw him on a Wednesday, he called me on a Saturday and said, Hey, you know, this this is what I'm seeing. My IgG was tested, which is a free light chain um in your blood, and it was over 5,000 and it's supposed to be zero. He also had me do what is called a 24-hour urine test, and that came back positive for what's called a bench Jones protein, which is a tall a telltale sign that somebody has multiple myeloma, like it'll be in your um urine, it'll it'll pop right up. So between those two things, he referred me to an oncologist, and I saw an oncologist, I believe it was that following Wednesday, um, and I was referred to a actual multiple myeloma specialist within all within two weeks, and I started I started treatment within two weeks of finding out. Um I went down to the James, the Ohio State University of James in Ohio, Columbus, Ohio. If anybody's from Ohio, go bucks. But uh so that's where I ended up with that. And I kind of I kind of dismissed going back to the VA at that point. Basically, all I did is just had them sign my community care paperwork because I was getting better, I was getting better treatment um at Ohio State and with this local doctor that I have. So that's kind of what led me to where I was at. And come to find out the backstory, the pain that I was having in my side was a lesion that was eating a hole in my rib. So that would make sense as to why, yeah, to why I was having um they found it by doing a PET scan, which if anybody knows or doesn't know what that is, they inject you with a dye and they look through you and they find where all the the cancers at. I had five active lesions, and the biggest one was on my rib, and it was eating a hole in my ninth rib.

SPEAKER_01 13:52

So so so you you kind of glossed over the the PET scan, you know, it's radioactive stuff they inject you with.

SPEAKER_02 14:00

I guess I guess when you go through so many tests, you just don't think about it anymore. You know, I had so many needles in my arm and medicine and chemo, but yeah, I didn't see it. But it was kind of cool when you look at your results, you know, you can see where everything shines, lights up, but I don't want to say cool because it's not cool, but uh the process of it is cool, I would say.

SPEAKER_01 14:20

Yeah, it's definitely not cool, but it it it is a little scary. Like at least for me. I was in the chair, it was like an iron chair, is what it felt like. Uh they came in all suited up, gloved up, uh, to give me this little bitty shot. Uh and it just it freaked me out a little bit. They had it like behind a shield and everything. I don't know if you had the same experience. Yeah, it kind of I I don't I don't know.

SPEAKER_02 14:45

Like I remember the first time it was a it was it was the what are they, phlebotomists? Is that what they're called that come in? Is that well, the NERS phlebotomists, whatever. She actually missed my vein. They went in through my uh by my elbow on the inside, and it was the butterfly needle, right? And she pulled it back out and tried to put it back in. So that's how that whole thing started. But um now that you do say that, you know, thinking about once they inject you with the dye, it it does, it does kind of give you a different sensation, doesn't it? There's that there's that uh warming feeling.

SPEAKER_00 15:19

Warm feeling.

SPEAKER_02 15:20

Yeah, like a warming slash not really sure. Like when you kind of like when you have a panic attack, if anybody knows that feels like the back of your neck gets a little warm and you know, it uh see that I guess again, I didn't even think about that because it's just all considered so routine in the process to to either get something diagnosed, you don't you don't think about what's going in your body to get to that end result to get cured or taken care of.

SPEAKER_00 15:45

So I I do want to bring up one thing. So you and Casey actually have a similar story when it comes to the VA diagnosis, you know, being able to get diagnosis. Casey had been going back and forth for quite some time, but his started with a pain too. Casey, do you wanna kind of talk about that?

SPEAKER_01 16:00

The pain and stuff, I I was feeling back pain, severe back pain, and the VA messed around with me for like four to five months with not being diagnosed properly, you know, and all that stuff, been pushed around from doctor to doctor. And uh eventually I just went to a local ER and uh, you know, after the fact I got community care, but it was such a hassle going through that whole process. And I I j I just hate hearing other people having to go through that today.

SPEAKER_00 16:31

Yeah, you bring up a good point. I I think when it comes down to the you know being able to get screened, you know, especially not not to, you know, throw your age under the bus, but how old were you again when you when you were diagnosed?

SPEAKER_02 16:42

I was diagnosed at 41, and I was told when I was diagnosed that this um specific type of cancer is is not common for somebody my age, that uh majority of the time it's 65 and older in a whole different demographic even of of uh life. That's why it was kind of the the approach to treatment was a little bit more intense than it would have been if I was um say 20 years older than what I am. Um I don't know if you want me to get into that process.

SPEAKER_00 17:15

Please do. Yeah, I I would be interested to to hear what your your treatment was like.

SPEAKER_02 17:20

So once I got down to the James at Ohio State, I met up with my uh hematologist, my multiple myeloma specialist. Um she's on the research team down there, and um, she's a little bit younger and very uh direct, I should I would say, you know, I love it though. You know, she's very direct, she puts puts it out there how it is, but she's she's very smart and I trust her with my life. Okay, so her thought process was being that I am so young, we're gonna do what's called a auto stem cell transplant, which is where I would have a stem cell transplant and I would receive my own stem cells back, not from a donor. Less less um risk of uh graft versus host disease, infections, maybe you know, more long-term stuff because you're getting your own some stem cells back into you. So move forward, we get this all scheduled, get it all going. The VA steps in and says, you know, we'll do community care, but we have to see you first. I'm like, okay, no problem. I have no problems with that at all. But the problem was is they made me go to Indiana, to Indianapolis, push back the date of my stem cell transplant because they wanted to to do their own, I should say, own testing. But they had all the testing that Ohio State had already done. So there was a little bit of confusion with all that. Um they did eventually end up taking care of all of it, but I have to tell you a funny little story about this, is I shouldn't say funny, but two days before, three days before my stem cell transplant, I got a phone call from the VA saying we're not gonna be able to cover it. We're not gonna do this. And I had everything already scheduled. And I said, Well, let's let's hold on a minute, because I had a liaison the whole time from Ohio State talking with the VA and all of this and making sure everything was lined up. God love the the lady that was on the admin side of this, that she made a minor mistake. And when she put in for the community care, she put in the Ohio State, she didn't put in the actual cancer center. So the VA kicked it back and said, No, you now I have to go to the Cleveland clinic and restart the whole process over. Well, you know, I don't have six months to restart up cancer. You don't have that kind of time with cancer because you never know what's gonna happen. You know, we have today, that's it. That's all we got. That's all I try to focus on is I don't know what tomorrow's gonna bring, but I can't wait for the VA to redo their thing. Anyway, long story short, it all got taken care of. I had my stem cell transplant in August, August 1st, and uh one August 1st this year will be one year uh rebirth day.

SPEAKER_00 19:58

Congratulations.

SPEAKER_02 19:59

Thank you, thank you. I'm looking forward to that. It's been it's been quite the journey. I my hair all grew back pretty good.

SPEAKER_00 20:05

The uh Katie wears his hat. He he doesn't it's barely growing back. He's jealous of it.

SPEAKER_02 20:13

Is that still pretty curly? It was pretty curly for a while for me, but no, no. Oh, jeez.

SPEAKER_00 20:29

It's been like that, you know, since like six months after his uh last chemo dose.

SPEAKER_02 20:35

I got a little advice for anybody out there that does go through the chemo. My wife and I took lint rollers and she roll my head, and it took out you won't get the hair in your bed at night. You just do it during the day, and it was kind of it was kind of fun. So you like that, don't you? That's a good one.

unknown 20:49

Yeah.

SPEAKER_01 20:50

Dude, that was a good one. I I was I was plucking a little bit, and that's probably why I have bald spots.

SPEAKER_02 20:56

Prophet my wife, she's the one that came up with that. Megan, shout out, by the way. She she sat there at night and she would just roll my head sometimes, and it seemed to work just perfect. Yeah, just roll and roll and gotta have fun with it, you know. You gotta have fun with it.

SPEAKER_00 21:10

So we you know, I I I say this a lot, you know, on you know, it's when I'm talking to other people, but I mean, we laughed, I think, more than we cried during, you know, his entire experience in the hospital. And that was even after he decided to pop a pimple and go into sepsis in the ICU for a week. Um, I again he really wanted my attention at the time. He didn't already have enough of it, so but um it was just one thing after another. And I'm like, man, I was like, you were just you were a hot mess, but that's when he started losing his hair. So they came in, and this is when we found out that you know, after you do like a round of chemo, like you have no white blood count. And uh that's whenever he was like, I'm starting to get some pimples on my face, let me go ahead and you know put bacteria in there. And uh he lost his, he lost he was starting to lose his hair, so he was like, I'm just gonna shave it. So they brought out these really crappy, you know, like shears. And uh we basically shaved him from, you know, top down, you know, just uh, you know, get rid of it. Although he did have like some, you know, hair on his eyebrows, and I think that was about it. Yep.

SPEAKER_02 22:09

I didn't lose my eyebrow hair either. All this came out, but it grew mine grew back all gray. So you still got nice colored ears. Mine's not mine's pretty gray, but mine's pretty good.

SPEAKER_01 22:19

It's starting to get gray, but you know, I am turning 40 this year, so it is what it is.

SPEAKER_02 22:24

You uh you popped a pimple, huh? That uh that's probably something I would have done, but I didn't even think I didn't have any pimples. I had a port, so um watching them clean that though, I it's very important how how clean everything has to be, and they don't want you to get an infection because days day zero.

SPEAKER_01 22:44

Can you go more into that? Uh like the the process of cleaning it and everything.

SPEAKER_02 22:50

Uh yeah, like the port the access part came out of my chest. There was two of them, and the nurses would come in, and anytime they would either put a new bag on, or sometimes they would even just come in, and anytime that there was any exposure to that port opening, they would take alcohol swabs. I mean, I'm talking not swabs, but pads. They would walk in with, I would say, probably 30 to 40 of these little pads, and they would use every single one of them. Anytime that it was touched, anytime it was moved, anytime anything happened with that port, these these nurses were cleaning the tips, cleaning the tips, cleaning the tips. And um it just it just showed me how how real the situation was, you know, that my body had gotten to that point where it was so weak that from the inside anyway, that even the slightest little bit of germ that got inside of me could could could potentially be be lethal, you know. And those are the little little moments in this whole process that kind of just brought you back down to reality, you know. We all try to put on a big facade and show, and I'm a sarcastic person, and that's how I deal with things is um probably rude sarcasm, or should I say rude, but uh inappropriate sarcasm, you know? Like I make dark humor. Yes, dark humor. That's the word I'm looking for. And uh but just the little moments like that, you know, that you just kind of realize like how re how real this is, or you know.

SPEAKER_00 24:16

So I I do want to talk about um, because you you briefly mentioned it, you know, the the mental health side of it, I guess you can say. Were you offered mental health counseling or any peer support groups or anything? But I mean, I know most cancer centers have that, but what was that like for you um on the mental health and also the nutrition side and and all those other factors outside of going through just chemotherapy?

SPEAKER_02 24:38

Well, luckily, um back in 2018, I was struggling with PTSD pretty bad, and I got linked up with a psychologist that I'm still with to this day. For me, the situation might have been a little bit different because I had already established the connection with a VA um psychologist. So when they did offer um mental health help, I guess you would say, I already kind of had that basis covered because I've I've I see my therapist once every two weeks, sometimes every week, even still to this day. And that's an ongoing thing for the last nine years. And that's so I guess I guess I'd say for me, um I kind of already had that connection going into it. So the support that I needed from the uh mental health side of things was always already there and established. But you know, they did, you know, ask and every time that I was uh approached by somebody, they they would ask me if you know I needed to talk to somebody, even though they knew I needed or even though they knew I was talking to somebody already, they did offer support. They did have a nutritionist come in. But this was the civilian side of things. This wasn't the VA.

SPEAKER_00 25:50

So I don't know if that's what you're asking me, or if it was you were wondering about the VA getting involved or well, it's it's interesting because Casey's experience was was very different, you know, when it comes when it came to to his treatment, you know, he would they were so focused on the physical side, getting chemo, you know, getting his chemo, getting the you know, the uh the tumor, you know, out the surgery. I mean, it was very focused on the cancer itself. Uh we Casey, you saw a nutritionist. I I was I mean, I was a little underwhelmed with it. I came in there with a chemo cookbook with all the different nutrition in there on what what should go where, and and they basically told Casey he can eat whatever he wanted, so he ate Taco Bell every day. It drove me crazy.

SPEAKER_01 26:30

Nice, yeah, you definitely did breakfast quesadillas almost every day, Monday through Friday at least. How did that not tear you up? Like I oh man, like well, I was still doing chemo and all that, so it was already tearing me up.

SPEAKER_02 26:42

I was gonna say, yeah, I guess at that point, what does it matter? Yeah, that's might as well taste good coming in, right? That was but no, I guess did you go through the VA? Is that where you had your stem cell or your transplant? Is that is that where you went or was it severe?

SPEAKER_01 26:58

So I had testicular cancer, late stage. They pulled it out, and then um they shrunk the tumor that was pressing against my kidney. So I I got community care through uh Rush University, hospital, all that good stuff. They saved my life multiple times. But uh the VA itself, they kicked me around quite a bit until I went to a local ER and then Ashton checked me out and sent me right to Rush.

SPEAKER_00 27:26

I mean, in my defense, that's where I worked. I knew a lot of the doctors, you know. I mean, it just made sense because I could go to work and then I could also be there, you know, whenever he was having his infusions. And, you know, for me it was really beneficial because I didn't have to take off time from work. My parents, you know, they helped out so much with our, you know, with our children and our animals, and and that was fantastic. But how how was that for you? I mean, you I know you have a wife. Uh, what what was that like, you know, on the you know, on the caregiver side? How big of a support was that for you?

SPEAKER_02 27:54

Well, you know, I I don't I don't think there's any words I can say about my wife to show how amazing she's been through this whole process, even to this day, like like there's not a better person in this world. She is the most amazing thing that I could ever ask for, anybody could ever ask for. Um even from day one of diagnosis, she looked right at me and said, This isn't your cancer, this is our cancer. So I knew at that moment that like I guess I shouldn't say a hundred percent knew, but there's not been a day, even in the dark days when maybe I'm not the nicest, you know, the steroid days, the chemo days that uh she's not unconditionally there. She's the most she's amazing. She's an amazing person, amazing woman, amazing wife. She was there for me every day, even with our four children. She I had my stem cell transplant two hours away from us, and she made it a point to be with me every single day. She stayed and um she didn't leave my side. So I get a little, I get a little, I get a little, she's amazing, so it gets me a little might need to take a second.

SPEAKER_00 29:05

She's you might need to go give her some flowers just as a reminder, some like uh, you know, some chocolates or something.

SPEAKER_02 29:11

She'll probably be like, I hear you're talking all that, all that good stuff about me, but then why do you why do you act like such an ass sometimes? Well, I'm a guy. Okay, that's just how it is, right?

SPEAKER_00 29:20

You know, we we do the same thing. I mean, I I say cancer is the best worst thing that ever happened to us because we got to spend some great time together. Because I mean you you talked, you have four kids. You know, we had two kids, two dogs, two cats that Casey made me get rid of because apparently chemo made him allergic to him. So he says. But, you know, it was uh he always gets me. But but you know, honestly, though, I mean, we were able to reconnect as a couple, and you know, I because I had so many different titles. I mean, you're you're a you're a wife, you're uh for me at least. I'm I'm a wife, I'm a parent, you know, I'm working full time. Casey was working, you know. I mean, so we had so much going on that you know, we didn't realize that we were just kind of drifting apart. So I think when and if it ever happens when we become empty nesters, I I don't know about you know you, Casey, but I think we're gonna be in a good spot. Like we're not gonna want to like you know run away from one another. Do you do you feel this do you guys feel the same way?

SPEAKER_01 30:09

I don't want to answer that right now.

SPEAKER_00 30:11

Oh, didn't do the dishes tonight.

SPEAKER_02 30:13

Just don't just don't get any more animals, right? Cats or whatever it was. That's what that's what you're saying. Uh, you know, I I I I would have to agree with you a hundred percent on that. You know, you don't realize or see, you know, I think tragedy or something, I don't even want to just say tragedy, but any type of monumental situation that happens in a relationship, either one or two things is gonna happen. It's either gonna make you or break you. And this is just my personal opinion. Um, and I think I think this cancer diagnosis, to you know, to relate to what you were saying, a million percent brought us closer together, and we got to see a different side of each other that we didn't even know that the other person had, if that if that kind of makes any sense. Um definitely brings you closer together. Um as a even as a family as a whole, you know, it makes you made me look at uh my children a little bit different, made me look at, you know, just everything a little bit different. And you know, my wife and I, you know, we have our moments, which what what marriage doesn't have their moments, you know, and and it gets gets tough, but I will have to say that from my personal opinion, I believe and I feel that being on that side, being the caregiver side is harder than the actual side that I'm on, because all I have to worry about or all I had to worry about is getting better. And how can you like for me personally, how can I understand what it's like to see the person that you love and care for like going through this? And I can't I can't even fathom I have no understanding of that. Just I I believe that it's it's it's it's very hard and it just shows what kind of a person my wife is. And I keep talking about my wife, but she's awesome, by the way. I just want everybody to know that she's awesome. Um But yeah, it definitely made us grow together a little bit closer. We actually have a huge age gap with our kids, though. We have a 16-year-old and we have a three-year-old, so I don't think we're gonna be empty nesters anytime soon. We're gonna be, I'll probably be in a wheelchair by the time we're empty nesters.

SPEAKER_00 32:18

That's funny. How was that conversation with your kids? Uh, you know, that was something that Casey and I, I mean, we just kind of ripped the band-aid off. My our son at the time, he was in first grade. So I I know that was a much harder conversation versus when we were having that conversation with our our older daughter who was in high school, and you know, like she understood what that was. What what was like, you know, what was that like for for the both of you?

SPEAKER_02 32:42

Well, you know, for for my youngest, he's he's three now, but I I think the conversation went as I was trying to talk to him about it, and uh he just wanted to watch Bluey. So that one was pretty easy conversation, but uh the uh the older ones, I don't know. We did just talk to him about it, but we just kind of know it was like a reassurance conversation, like yes, this is what's going on. Um there's a plan in place. They're not saying, you know, obviously we don't know what's gonna happen, you know, prognosis wise, but for right now, um they have a plan in place with chemo, with the the route that we're gonna go. And you know, our our 16-year-old was 15 at the time. He's the oldest, and he is like the most mature 16-year-old you're ever gonna meet. Like he could probably go live on his own and take care of everything. Like, he's just he's just that kind of kid. And um I felt that like you know, like you said, just kind of ripping the band-aid off, but the presentation had to be right for us. And you know, we just kind of we're very transparent in this house. That's how we that's how we live, or that's how our family is. We talk about our feelings, we talk about things. Um just kind of made it a part of our our our routine that you know it's there, let's talk about it, let's not, let's not put it under the rug and wait for it to come out. I think overall it's just kind of become a uh I don't want to say almost like a like a a routine, but you know, the only thing that I wanted to come from this with the children for me is I wanted to show them how resilient a person can be in life. And you know, this this has shown me a different side of myself, even you know, finding out that moment and the doctor looks at you and said, you know, you have can't you have cancer. I know you hear people talk about it all the time, or you see it on movies, like you know, they they they make it Hollywood or whatever, but it is definitely not a Hollywood feeling. It's a it's a very secluded, dark, lonely feeling when they, you know, tell you that you have cancer. And Casey, I'm sure that you probably had your own experience with it, you know, when you actually found out that that's that's what it is. But it's like in that moment I took it and said, I'm gonna do this for my wife and my kids, and I'm gonna show them resiliency, and I'm gonna show them how life is gonna come at you and how you're gonna handle that. And that's that was kind of the approach, even in the conversations, of letting them know that you know, dad's got cancer and here's what we're gonna do.

SPEAKER_01 35:11

So that's kind of where I'm at. You're completely right. So when when you get hit with this this diagnosis of any sort, you know, it it's always bad. Cancer is bad in general, but it's not like the Hollywood portrays it as it's not an instant death wish, like or you know, death sentence. So it when you go into it, if you go into it super negative, like, oh, I'm definitely not gonna do it, your body's gonna react to it and it it's not gonna fight as hard because you don't want to fight as hard. But, you know, if you have a goal, you have a plan, you know, cancer is only a small chapter in your life. If you really give it your all, you come out the other end really, you know, strong and everything. Um, it's just a chapter of your your story, it's not the full story. So you can definitely do it, say you did it, put that stamp and hope never to have it again, and move on with your life. But it's always going to be a small part of you, a small fear. But yeah, you gotta just completely stay strong and keep pushing forward and helping out someone else that's hearing your story because maybe they're just starting their mission or their their journey.

SPEAKER_02 36:13

I absolutely agree, and like that's that's the biggest that's the whole reason I I I reached out and talked with Sean and all that, and wanted to, you know, talk to you guys is because don't don't wait. If you just keep being persistent, if something's not right, if if you're not if if you something's not right, your body's gonna tell you something's not right, listen to it. And I I would say that's what I I I I did. I just kept having that feeling something's not right. I'm not gonna accept this is what it is, because I know that's my body's telling me this is not what it is, so I need to go see and get a get a you know, see what's going on with my body.

SPEAKER_00 36:52

And uh I mean I I love that that you were able to do that because so many veterans, and and I'm guilty of it as well. Casey's always getting on to me about making sure that some of you I'm like, do do as I say, don't do as I do. But so many veterans just have that mentality of the the suck it up and you know just just live with it, especially for those of you know us that are that are so young. I mean, you were uh, you know, like I said, for 41, Casey was 34. I mean, that is not standard ages that people get cancer. And so a lot of the time we just kind of go with the flow. You go to a doctor, especially in the military culture, you know, we have that authority, you know, like whoever knows the most or um is able to sit there and you know basically tell us, you know, what their opinion is. I mean, it's it's a and at least in our you know, in our in our world, you know, that's a pretty big deal. And so a lot of the times we just take it at face value. There's not a lot of advocacy going on with, you know, with our, you know, with our community. And and it and it sucks. And I think that's just a g, you know, a not even a uh you know, a veteran thing. I think that's just uh, you know, human nature of like, I don't want to go to the doctor, I don't want to pay that bill because it's expensive, or you know, I don't want to take time out of my day to go to the doctor because who wants to do that? Um so I mean I I love that you're at you know, that you were able to advocate for yourself to to be able to get somebody to actually take you seriously, because that is not easy to do.

SPEAKER_02 38:07

Persistence. That's that's that's the thing. Like, oh, you know, I once I didn't get the answer I liked, I was and I, you know, what was really is disheartening about it is that I had to be so persistent, you know, it shouldn't have had to take me to to do all that myself. I should have been listened to from the get-go, and there should have been more I don't want to I don't want to get into it too much, but there just should have been things should have just been, you know. I I wish there would have been a little bit more support in some aspects of it.

SPEAKER_01 38:36

Yeah, the VA is really dug its ditch basically with the reactive instead of proactive uh in that you like uh a veteran with the protocols right now are really crap and will be completely that's uh all medical right now, especially with cancer. If you're not 45 or older, you can't even get the first screening, which is prostate exam. Like you and I still won't qualify for it right now. So colon actually, colon screen. Or colon screening, sorry. Uh colon screening. So we we can't even qualify for it because we're too young, and that that barrier needs to come down so we can save more people. And that it it's they're slow to adapt to new stuff. That's that's my take on the VA.

SPEAKER_00 39:17

I mean, I think we're it's it's more of an insurance thing. You know, the reason why that there's policies and protocols because the insurance don't want to, you know, pay. I mean, a lot of the times they don't want to pay out. So if you look at you know a bunch of 20, 30 year olds saying, hey, I need a you know, I need to get a test, it's gonna be difficult, you know, for them to be able to stay sustainable, you know, so they have those policies and protocols in place. But you know, the the veteran population, I mean, that's a whole different, you know, market when it comes to you know how how we should be getting treated. You know, veterans in the post-9-11 generation that have deployed to Iraq, Afghanistan, you know, and in Operation Udon, all these different locations, I mean, they they're getting cancer very, very young. And I think that needs to be a policy change, you know, both at the at the federal and congressional level, but then also, you know, make you know, making the insurances, you know, take note of that as well.

SPEAKER_02 40:01

Yeah, I wish, I wish part of the uh out processing when I was getting out, you know, knowing I wish there'd be some sort of screening to happen before we got out, like a, you know, a blood test of some sort or something. Just we we get back into the civilian life, you know, because we were exposed to a lot of stuff. So who knows? Maybe, maybe they would have found it back then. You know, I I I don't know. I don't know, but um I just wish there would have been something I could have done to to know that's what it was instead of having to go through a whole year over a year and a half of you know, trying to figure it out on my own.

SPEAKER_00 40:37

Now, I I do want to ask, because not everybody knows all the different cancers, you know. Explain what multiple myeloma is for those that aren't experienced and and don't understand what that is.

SPEAKER_02 40:48

It is cancer of your plasma cells. Um, basically it's a it's it's in your blood. It's not bone, it's not leukemia, which is leukemia as a blood cancer, but this is the plasma cells inside of there that uh there have abnormal producing abnormal cells that just kind of come out, and that's like I said before, that's where that bench Jones comes into your urine because it filters out, it pushes out all these extra uh cells that you have. Uh it's the same similarities uh of leukemia with you know uh how you feel and like what it kind of does to your body, but um symptoms are fatigue, anemia. Basically, I'll just say I have multiple myeloma, and my multiple myeloma is um IgG is where they found the cancer. The abnormal cells were in the IgG light chains. Um there's different types of multiple myeloma, but I'm at a high risk. They did a genetic test on the DNA of the actual cancer cells, which I thought was pretty cool how they could test all of that, you know, it's very, very in-depth. And uh there's two genetic markers on there saying that this is a high, high-risk cancer that I have, which uh means that time for relapse is a lot shorter than it will be for somebody that might just be at a normal risk with no genetic markers. Um I was staged to the stage two when I was diagnosed. Um so basically I take a chemo pill every day, a maintenance chemo pill every day, post-stem cell transplant, and once a month I go get infusions in my stomach and um take a steroid, and I'll do that for the next two years and I'll be on chemo maintenance pill wise. It's inevitable, it's inevitable, indefinitely is the is the word that they use. So um, this is not something that's going away. Um, I still have active cancer inside of me, but they have it what they call a um a hibernation. That's what the stem cell transplant. They wanted to put it a deep hibernation. So I am having a uh I'm in good response is what the the specialist would say that it is. So I kind of went off on a little bit on that.

SPEAKER_00 43:06

No, it's good, it's good information, you know, for you know, for you know, people that may be going through this, you know, themselves or um, you know, that that may think that they they have it. So I think it's solid information. One of the things that that we experienced when we were going through his, you know, Casey's cancer treatment was you know, we wanted to be able to think ahead, you know, so many people, uh especially whenever you're talking about lifelong chemo pills, you know, they kind of get stuck in that rut. Um, but you know, and I know other people that have, you know, that people that have a bucket list of of items that they want to be able to complete. Uh, wanted to kind of get your take. We went to Universal. We love, you know, going to the the parks in Orlando. That was our post chemo vacation, or you know, just something we did. Did did you and your family ever, you know, do that? Like whether it was like a big celebratory party or anything like that?

SPEAKER_02 43:54

You know, we we didn't really do anything post nothing big, you know. We we live out in the country so we have a we have a big big backyard and um we're we're more I don't want to say homebodies but like for us like our our thing is is we just hung out together. That's all I wanted. It's just that time with the kids and my wife and we want to go do something. We we we want to go camping and go and do all that but um I'm st I'm still working full time so we haven't really done anything like she she turns I don't want to say her age but she has a big birthday coming up soon and uh we might we might want to incorporate uh something big like that you know we didn't know where we're gonna be at this year so we've been kind of planning ahead and uh I got so I got something in mind.

SPEAKER_00 44:45

So well if if you're interested you know you can come and bicycle from Florida up to Washington DC with us this summer.

SPEAKER_02 44:51

I mean that's a way to celebrate you know health and recovery uh it's for cancer you know cancer uh awareness and education and then we're gonna go talk to members of Congress so you are more than welcome to join us in DC that's a a great way to celebrate not to mention when we get there it'll be uh the 250th uh you know July 4th for us so I mean we're we're really excited about that but that's a great way to celebrate with the family so awesome does sound like all right is there anything else Casey I don't know is there I mean you actually okay let me she likes to throw me on the spot on some of this stuff so during your treatment when it was at at your worst what was one of the funniest things that happened oh gosh we all know that there's either a doctor that did something funny a nurse that did something funny you did something funny your wife it was me I'll give it I'll this is this this is not going to be recorded right absolutely it is definitely going to be recorded it's kind of funny because this just shows you my personality well anyway uh because the chemo flushes me out it flushes us out right it's coming everywhere I developed um some issues from the back side well it got to the point where the cream that needed to get put on uh the nurse would just walk in and I'd be bent over the bed ready to go for them to put this cream on me. So that's the kind of personality I have so they thought it was all hilarious and so yeah that's that's hilarious.

SPEAKER_01 46:15

Well you you shared one I'll share one uh since my was testicular cancer and Russia's mainly a uh teaching hospital I guaranteed had about 30 young females and males coming and touching my junk before they took it out I I didn't think it was funny at the time but looking back it's hilarious like I have no problem now just dropping you know if I have to dropping trial just let them go I I I will sit there and say something on this one.

SPEAKER_00 46:44

So before his diagnosis you know like it it was enlarged you know and he comes over I'm laying in bed or whatever and he comes over he's like off to the side and he said there he's like does this look different to you and I was like I'm not a dog go away you know and so then fast forward to the day of the the orcheotomy that's what that's what it's called um I uh I you know we're we're kind of waiting and Casey had actually asked me to leave the room because this nurse no idea who she was you know I mean she could have been a complete stranger we'd never seen her before but she basically said hey I need to you know I need to check you um so he dropped trial in front of her kicked me out of the room like I've never seen it before and then uh you know basically it was sitting there showing I was like she had no reason to see that you know it's like she'd never seen it before she's just wanted she's just wanting to take a look yes yes she was yeah honestly she could have been a janitor for all I know you know just walked in with some scrubs be like hey drop it I was like okay it's it's already been like 50 people or something in there within like 24 hours I just automatically okay sure let's do it hopefully hopefully uh yeah she probably just some random person in the in the the um waiting room just somebody's family member like hey let me go look at this dude's junk that's great that's great maybe the the part that gets me so I'm I'm kind of squeamish you know I I don't there's things that I don't want to see and so Casey wants to have like everything video recorded and pictures and you know all all the things and so his urologist after the surgery had come out and he was like your husband wanted me to show you this and I'm like oh crap what happened he shows me on his phone a picture of his testicle under you know like outside of the body and I'm like you know like trying not to it was disgusting so of course Casey wakes up I mean he had been delirious apparently he was already under all the the medication and everything he says that he never told them I don't believe him that that is going to be a dispute that takes us to the grave basically on that one.

SPEAKER_02 48:32

No go ahead go ahead I was gonna say that just shows you how like warped our minds are that you might have done it subconsciously you know what I mean like that's just that's good.

SPEAKER_01 48:41

I like that it it still came out really well I thought it was I'm I still think it's hilarious. I got it on my phone right now. You know just yeah it it is it's is remembering I was hoping more of the shots of you know like I'm on the on the bed covered they're doing surgery stuff you know like an intern taking pictures or something but no no he laid it out on the table took a picture of it outside of my body and gave it to her that's what's up it was not what's up I said somewhat that was not what I was experiencing.

SPEAKER_00 49:13

I was I was expecting him just like hey he came out okay he's fine no he didn't do that at all he was like your husband wanted me to show you this and I'm like is he alive like here's what's left okay that's awesome that's awesome good stuff gotta you gotta you gotta find time to smile and laugh throughout this whole thing it's just that's one piece of advice I give anybody going through anything like this like you have to let yourself have a little fun and laugh because it'll it'll put you in a bad place if not.

SPEAKER_01 49:42

And speaking of that what are you doing now man? Like what what's your what's your purpose now you know since you're still getting active um or sorry maintenance mode right now what what are you doing? What like job hobbies what are you doing?

SPEAKER_02 50:01

I actually have a pretty pretty good job. I am a production supervisor for a very large company I don't want to I don't want to say their names but um and uh it's it's an amazing job provides an amazing life for my for my family um but on the side like I'm all about my my family we got a big backyard I'm a gun guy I got I got guns um I did just kind of get myself a little you know post one year diagnosis gift where I'm I just bought myself a a new truck I've always wanted a new truck and I I just I just got one she's not necessarily happy about it but um here here we are I uh I've wanted a truck forever um you know and our kids are involved with school stuff and we just we just we're really close to all our family and that's that's what I'm doing. I'm just being a I'm just being a husband and a dad right now that's my main focus in life so that's all I'm that's all I wanted to be and that's that's what I'm I'm gonna do.

SPEAKER_01 50:59

So yeah that's awesome man that that's that's awesome I well you celebrate your one one year by buying a brand new vehicle my goal is to celebrate my end of remission you know five years they don't check you basically anymore with a a new jeep gladiator that's my my goal goals and I get my my last scan in November and that happens to be my birthday too. So hopefully it goes back good. Yeah this is it what color don't know I'm bounced between I always love the red and black look on I it's maybe it's because you know my high school back in the day was red and black maybe it's just ingrained I don't know but a good blue and black you know is also a good pick.

SPEAKER_00 51:42

Oh so Matt before we sign off is there anything that you have you know that that you want us to be able to go over with you know that you want to be able to tell the audience or anything like that before uh we kind of do our our sign off pitch?

SPEAKER_02 51:54

Uh you know just like I said previously you know just listen to your body and just remember that you know when you feel like you're alone in all this there are others out there you know if if there's anybody that needs anything is afraid to make that next step if something's not right or they are going through this process like I reach out you know you guys have my name I'd be more than happy to talk to somebody through all this and let you know you're not alone you're not alone.

SPEAKER_00 52:24

Now you bring up a good point on that one you know Matt says it best reach out and touch somebody my journal instructor said it as well ATT reach out and touch somebody you know we we we're there for each other we're that community and you know you don't have to be a you know be at it alone but Matt thank you so much for joining us on the Veteran Cancer Talk we loved having you we love being able to you know hear your story and all the good work that you're doing out in the community with your family and and everything. So thank you. You're welcome back anytime. I think Casey's talking about possibly doing an after hours talk with a couple of guys so love to have you back on that as well.

SPEAKER_02 52:54

Awesome. Yes thank you for having me and letting me share my story and you know getting the word out and hopefully we all can you know get through this together.

SPEAKER_00 53:03

So yeah let's go kick cancer's ass is what I got to say