Kate Belany: welcome to Beyond the Five Years, a podcast sharing stories and strategies from people living far beyond a stage four cancer diagnosis. I'm Kate, a caregiver, and today we'll explore what helps people survive, thrive, and find hope beyond the statistics. Each episode, we'll hear from someone who has outlived their prognosis or supported someone in their journey and learn the lessons that help them along the way. So today we're joined by Roslyn Trago, an early intervention specialist and stage four cancer caregiver. ⁓ Roz brings a very unique perspective shaped by both her professional work, supporting families and her personal experience navigating the complexities of caregiving. I'm so grateful to have her here sharing her story. So welcome Roz, thank you so much for joining. ⁓
Rozalyn Trego: Thank you for having me. I'm so excited.
Kate Belany: Okay, so if you wouldn't mind Roz, do you mind sharing a little bit about what life was like pre-cancer diagnosis?
Rozalyn Trego: Yeah, pre-cancer diagnosis, was, you know, both of us just in our 30s working hard, kind of that American dream. We bought a house, we were fixing an old house that's now almost 100 years old. So that was our big project. We were working on that together, you know, and just taking vacations and eventually wanting to plan a family. COVID happened. And so we were like, let's pause until that happens. And then cancer kind of took it away from there. So really, you know, living a pretty good life up until that point. So can't really complain until then.
Kate Belany: Cool. So what was it like? Can you take us back to the day where you found out that Jake had cancer?
Rozalyn Trego: Yeah, I mean, I will forever have that physically imprinted on my brain. He was having a lot of pain and for a couple of days he actually was misdiagnosed with having maybe some like bowel obstruction, but not necessarily anything larger than, know, saying cancer was not like in the realm. But he continued to have pain.
Kate Belany: course.
Rozalyn Trego: And so we went to, I kind of pushed him like, think we need to go to the ER. and we were there.
Kate Belany: And when you say pain, what do you mean? Was it like abdominal pain or what was that like?
Rozalyn Trego: It was shooting pains up through his groin into his abdomen. And he's not a guy who complains a lot. So it was very obvious that there was something wrong. He also had kind of a history of needing to get GI work done but didn't do it. So kind of putting off the need. And ironically, we actually had a GI appointment scheduled for the week after he actually got diagnosed So, you know trying to be not really preventative but address something and then and then all this happened. So Yeah, mostly was pain. I Occasionally he would have blood in his stool, but the prominent problem was the pain So he wants to be yeah, go ahead
Kate Belany: And did you know about any of this? Like the blood in the stool? I'm assuming you know about the pain, but did you know he was going through anything at the time?
Rozalyn Trego: I, I knew that his bowel issues were not normal and I had known that for years and there was a lot of conversation of you should do this, you should do this for yourself. And then I finally made the GI appointment. but he has a history of this. father has history of issues, not colon cancer, but just, like IBS, sort of issues. So. I had wanted him to go and then it finally got to the point where like we need to do this and then by then it was honestly too late. So yeah, there were there were definitely looking back signs and symptoms for a long time. I would say prior to this. Yeah. But yeah, definitely remember that visibly took him to the ER. We were there hours waiting on the scans. It was like 1 30 in the morning when he finally got diagnosis and I do really appreciate caretakers like nurses and who are gentle and she was you know like I'm sorry but I'm pretty sure this is a tumor and it's in his colon and you need to emergently go to the hospital and so we went to the hospital and then the next day he had surgery you know diagnosed stage 4 colon cancer it had spread to his liver So it was actually like in his colon. I think it was like three centimeters. And then there were multiple lesions, like 19, 20 on his liver at the time. And so we just took it from there.
Kate Belany: I can't imagine being in that scenario and having to react so quickly. So did you even have time to think about a surgery or you're just like, okay, we'll just we'll do whatever you guys say. This is.
Rozalyn Trego: Yeah, I mean, we were at the mercy of ⁓ just praying that we were at the right place that we needed to be. I had this call of wanting to transfer him to ⁓ OSU, being a bigger hospital than the hospital we were at, ⁓ which were right within 20, 30 minutes of each other. ⁓ But at the time, it was hard to find a hospital bed. ⁓ So they were like, we have one here. at Ohio Health We can do this tomorrow, get it going. We did connect with the surgeon and really liked him. I did my Google searching really quickly of who is the surgeon? What does all this mean? I asked a thousand questions, which will forever be who I am. And we were like, okay, getting it out was what made sense to us. And then what comes next when you hear cancer is typically chemo. And that's what they were saying was next step. so he had a Colostomy actually put in first and then We did some chemo came back for surgery and then eventually had a Colostomy reversal and more of the kidney to err the liver taken out and a Portion of his colon taken out as well. So, you know just do the next best thing is really, really what it was from there on.
Kate Belany: So did you know anything about cancer prior to this? Because I know when Ron was diagnosed and they told us stage four, was like, what does that mean? Like I had
Rozalyn Trego: Yeah.
Kate Belany: no idea. Were you aware or were you just like, we just need to get the job done?
Rozalyn Trego: I knew four was not good. And so I think with that was some naiveness where I didn't know enough to be like, what does that actually mean? You know, to like the lay person, when you say stage four, you're like, well you're terminal.
Kate Belany: Mm-hmm.
Rozalyn Trego: And so then down the line after a lot of research and just being in the community of caregivers. I understood that it doesn't have to be a terminal diagnosis and it's come a long way. But initially I literally was numb. I didn't know what to think. I just knew we had to do whatever was next and whatever would get him healthy. And like I said, the research just never stopped from there. I just started pouring into that because that's the only thing that made sense to me.
Kate Belany: Yeah, think like when you're a cancer diagnosis takes so much of your control away, or at
Rozalyn Trego: Yeah.
Kate Belany: least that's how I felt and very similar, like, the only thing I can control is what I learned and the conversations that we have and the challenges that we can place on, you know, asking the right questions. So totally
Rozalyn Trego: you
Kate Belany: get wanting to be fully prepared and understand what's next. I can't imagine being in your scenario and having to react that quickly because we had a while, like we got the diagnosis and then. Our first step was chemotherapy. So we didn't have to jump into any emergency surgery, thank goodness.
Rozalyn Trego: Mm-hmm.
Kate Belany: But I just was so unaware of staging, just had no idea
Rozalyn Trego: Yeah.
Kate Belany: what any of that meant. And I think I was just in shock for a really long time. I didn't react, didn't cry, didn't react for a really long time. And then I was like, once I kind of accepted it.
Rozalyn Trego: Yeah. Yeah.
Kate Belany: So how did life change once so you had the surgery, you get back home, how did your life change? Because I can't imagine you just went back to living the way you were. What was that like?
Rozalyn Trego: Right. Yeah, yeah, it was wild. We were in the hospital for a little while and I mean, immediately our community of people stepped up and that was huge for us. You know,
Kate Belany: Okay.
Rozalyn Trego: we had a dog at home. know, luckily, honestly, that we didn't have kids at the time. I don't know how people with kids, you guys with kids, managed it. It's wild to me. I think for our story, it was... meant to be not right now because of everything that's happened. But yeah, I mean, really after that, was like, I'm a caregiver in my work by nature. You know, working with little kids who are neurodiverse, you're just constantly advocating for an underdog and wanting the best for them and researching ways to find better ways for them, their needs to be met. So really that translated very easily over to Jake, what I will also say is that it caused me to change and we then didn't become husband and wife really. It was like caretaker, caregiver, and patient. And that's really the space, honestly, that we're still living in. You know, we have glimpses of a marriage, but the majority is, you know, he was in such a... depression also of it being his physical body that I was like, well, somebody's got to do it, you know? And so I was like, I'll research, I'll make sure you're comfortable, make sure you're eating all the best meals and, you know, reading every single food label and, you know, just to the nth degree, which is exhausting. But, you know, that's what we signed up for. You know, we did say for better or for worse and it was... worse. So we were here and we showed up and
Kate Belany: or worse.
Rozalyn Trego: you know, I didn't know what else to do other than keep finding things that would help and make it better and be the very best care for him as well.
Kate Belany: So in that search, what did you find or was there anything that was specific to a lifestyle change that you kind of picked up on and decided to implement for the two of you?
Rozalyn Trego: Yeah, I would say so, Colontown has been a great community. It was at the time on Facebook and now it's its own website. Those people were so helpful because I wanted to know all the answers to my specific questions. I didn't want to know the downfall of a lot of things. I just wanted to know immediately, like, meet me where I'm at. Here's what I need. I also had a good friend who ⁓ stepped alongside of me. She actually herself was Stage 4 colon cancer ⁓ and has since passed, but incredibly smart individual. And she was just filtering all of these things to me ⁓ from doctors to, ⁓ you know, adjuvants therapies and all these other things. ⁓ So, I mean, it was really, ⁓ it was finding a community ⁓ that ⁓ kind of twofold that understood the Stage 4 colon cancer world because they were in it, but then also a community that could just show up who were friends and family and knew, you know, kind of what my soul needed more than just the medical side of what I needed answered. So that organically happened like wildly fast. And a GoFundMe was set up and all that kind of stuff and people were just like really pouring into us. So For somebody who loves to give, and that is like a love language for me, it was really hard to receive and like, I'm so sorry I can't write thank you letters to everybody. I'm overwhelmed. But thank you. I'm so grateful. But yeah, hands down a community is what honestly got us through any of this, both for myself and for Jake.
Kate Belany: Alright, so you said a couple of things I want to hit on. So one colon town. For listeners
Rozalyn Trego: Mm-hmm.
Kate Belany: that don't know what colon town is, do you mind sharing a little bit more on what the app is and what it does?
Rozalyn Trego: Yeah, it is a network of people and caregivers and patients going through colon cancer to some varying degree. The curators of it essentially have you kind of sign up and explain why you want to be a part of it and then they filter you into groups that would be either by location, by diagnoses. So you pretty immediately have people that you can reach out to who are actively going through it. It's very much filtered, so it's not meant to be opinionated, I would say. It's meant to be factual and just really be a space where you can have a community of understanding patients and caregivers. Jake never got on it, doesn't probably even know how it works, and that's fine. That was my role of just being the researcher and being the one that connected to people. it also, what I do love is that there were a lot of doc talks on there specifically for us, local doctors, doctors that we've seen, that are prominent in the field.
Kate Belany: Wow, that's helpful.
Rozalyn Trego: Yeah. That do, you know, national speaking, engagements. So seeing some of those things was really helpful and leading us in certain directions. But it's great. Sign up if you're in the, the colon cancer world.
Kate Belany: Okay, awesome. Yeah, I think it's helpful to know what other opportunities are out there. And it's so funny. Our stories are so similar. Ron has never touched it. I feel like Ron and Jake are very similar in the sense of
Rozalyn Trego: Bye.
Kate Belany: like, Ron was like, I don't want to know anything. I have another question for you too on this. So we were really lucky, I think in the sense where no one gave us a prognosis, like no one told Ron or supposed to live or what the stats were. But of course me
Rozalyn Trego: Mm-hmm. Mm-hmm.
Kate Belany: as a detective, I was immediately online
Rozalyn Trego: Yeah.
Kate Belany: and saw all that. But Rod is still blissfully unaware and I think that's really helped him. Was Jake pretty similar?
Rozalyn Trego: Yeah, yeah, I would say for probably a couple of years, just really going through the motions, which honestly, like if somebody I don't know, I don't think I could have done that. But that's my brain, not his.
Kate Belany: Yep, same.
Rozalyn Trego: And it was self preservation for him. And I was like, that's totally fine. We did get to a point where I then was like, I want you to have self advocacy for yourself to own the questions to understand how your body's working. Once we got into it, I would say probably like two, three years in, where we
Kate Belany: Mm-hmm.
Rozalyn Trego: had some spaces to just step back for a second and take some of the caregiver hat off or down for a moment. And he wanted that to an extent. He still to this day kind of will put the wool over his eyes a little bit and buckle down and just try to get through. And that's fair,
Kate Belany: Mm-hmm.
Rozalyn Trego: where I still on the back end, I might look something up and maybe not even tell him because I know there's something he might not want to
Kate Belany: See
Rozalyn Trego: hear. And then when he tells me something, I'm like, well, this could be because, you know,
Kate Belany: Yeah.
Rozalyn Trego: so yeah, I would, I would definitely say he was just kind of, let's just get it done and figure it out. is hard.
Kate Belany: And how did, so how did going back to work impact you? Because that had to have been challenging too. Like, were you able to make his appointments or how did you balance a real life with this new cancer life that y'all have?
Rozalyn Trego: Yeah, I mean, prior to the diagnoses, I almost never took a sick day. I am kind of a workhorse, but I love what I do. I had the capacity to be able to do that if I needed to, and I used it to the full extent once everything happened with G. I really am blessed by an incredible community. mean, 99 % female. who are also caregivers and advocates for the neurodiverse population. Several who have had family members with cancer of varying degrees or themselves have had it. So they actually just wrapped their arms around us, you know, it like no questions asked. We were still semi-virtual sometimes, so I was able to kind of make some appointments around that, so I would be working. you know, if he was getting chemo for six hours, I would be sitting with him and working on my computer. So just, you know, you just kind of like puzzle piece your life together around it. The biggest, I never had to take FMLA until this year with his liver transplant, which I took six weeks off for. So
Kate Belany: Okay.
Rozalyn Trego: it was healing for me in some ways to go back. because I love my littles, I love my community, and honestly, it was just a distraction. It was a way for me to allow my soul to come back into my body and ground myself a little bit, even though it was like, our classroom can be insane. It was a different kind of chaos than my personal life. So it was just finding the balance of work and home life. as always as hard, but it definitely was different with navigating appointments and whatnot. Luckily I had summers off and there were a couple surgeries that fell over the summers. So that was also helpful. But it was, yeah, it's just constantly like a card game. Like how can we fit in the things that need to be done and maintain my job and all that sort of stuff.
Kate Belany: Yeah, yeah, I can totally relate to the getaway that you get from work and the reprieve. Even if work is stressful, it's not as stressful as normal life. Maybe you experienced this too, but after Ron's chemotherapy appointments, like obviously he was on the couch for several days afterwards. And I was going back to work and I had so many coworkers ask me like, why are you here? Like you can work remotely or do what you need to do. And my response was always like, there's nothing I can do at home, but feel bad for. Ron's situation, like I can't do anything right now. He just has to get through those first couple of days. So
Rozalyn Trego: Yeah.
Kate Belany: I'm not sure if you felt similarly to that, but agree with you when
Rozalyn Trego: 100.
Kate Belany: you say like, it was a good reprieve to, it is a good reprieve to like have something else to focus on from time to time.
Rozalyn Trego: Yeah, yeah, because you know, he's, as you know, like they're physically exhausted, but I'm just sitting there and my brain is going a
Kate Belany: Yeah. Yes.
Rozalyn Trego: thousand miles a minute. And so if I don't fit, I'm a person who physically needs to move every so often, you know, from sitting there and chemo for six hours. so my reprieve would just be like walking the dog on the trail. We have a trail that goes right by our house or, you know, work for sure. So it's just, I knew that of myself, like, Hey, I have to ground myself somehow. And just sitting here watching you be miserable is not helping either of, and for Jake, most of the time he was sleeping. So was
Kate Belany: Yep.
Rozalyn Trego: like, I'm really not helpful to you at all right now. So, and we both agreed that we felt comfortable with me going back. You know, I asked a thousand times, are you sure you're good? You're good, you're good. Do you need anything?
Kate Belany: Yep.
Rozalyn Trego: And he was like, yeah. So we just fell into that.
Kate Belany: He's like, yeah, leave me alone.
Rozalyn Trego: Yeah. basically.
Kate Belany: And y'all have been on this journey for a long time and I know for us initially I was like I'll do everything and we're just gonna power through and we're gonna get to the finish line and whatever I have to do to get there cool. And then we started to realize stage four is a different beast. It's not really a race to the end of the finish line because there may never be a final. we did it type of moment. And so I had to change things that I did to make myself feel, I mean, to keep myself going as a caregiver. Did you
Rozalyn Trego: Mm-hmm.
Kate Belany: ever have that same realization? And did you have to, like, what did you do to keep yourself going? Cause it's totally a marathon and not a sprint in this journey.
Rozalyn Trego: Yes, 100%. I think I'm still figuring that out. You know, right now what it is that I need, I know community, good community that understands where I'm at and I can say anything to, specifically women. It's helpful. There are some women that are really helpful in the colon cancer world like yourself that get it and when they get it, that's so helpful. But also just, I mean, the phrase I keep using for myself is we can pivot. We just keep pivoting because you just never know. I mean, it's been five years for us and notoriously things have popped up. And it just is, okay, then we do the next best thing. Like that's the only thing I have to say in our life is we just have to do the next best thing. But also find, it's such a, juxtaposition of like it is a terribly beautiful thing. It is so terrible that cancer exists, but it is so beautiful how much from my perspective it makes you just be appreciative of like leaves on the trees. The sun is shining, you know those little things that I think as a patient, I know Jake still struggles with that. I think he's very much so in depression a lot of the time and I can find myself being in that too. But I just can't live there. It's just not a space that I can live in. so finding those little things, if it's, know, the kisses from my dog or a friend dropping off some food and we're sitting outside for a little bit. I I don't require a whole lot to replenish me and I do love the simple things. And so I think finding these small joys, is the only way you can keep going because it is so, dark and so, terrible most of the time. But there are these pockets of really beautiful moments that make you appreciate working really hard to be healthy or that you get to have, you know, a window of opportunity, which in the cancer world isn't always happening. But yeah, I would say just finding finding true joy. which for me is working with my hands and being around the people that I love and just intentional time with people that care. So it's... Go ahead. No, go on.
Kate Belany: did you... I need to cut you off... did you always practice gratitude prior to cancer? Because it sounds like you kind of reflect on a daily basis and maybe think
Rozalyn Trego: and
Kate Belany: about those things that you're appreciative of. Were you always like that or did cancer change that for you?
Rozalyn Trego: I think, you know, nature versus nurture and there were some things that happened in my life that were dark. There's things that happened in Jake's life that were dark prior to this. And you just, to me, what I said to myself, probably as a college student, was which way am I choosing to turn? Am I choosing to find some sort of joy or am I just gonna let this run my life? And so that has continued to be the posture. It's continued to be grounding for me of this all really sucks, but I have to find a silver lining or eventually find, I don't, I hate positive, you know, toxicity of just being super positive. So I'm not that person, but finding these little things has always helped ground me. Like, wow, everything can be crazy. But like this flower continues to bloom every year and it sounds really fluffy, you know, there are honestly people watching people interact and you know, seeing this person do something so kind and humbling for this other person inspires me. Like, well, certainly they're going through that and they're willing to, a lot of people have just been inspiring to me that have helped us out who have so much other things going on as well. yet they're still finding a space to pour into us, which blows my mind. So I would say those little things continue to ground me and know that there's life outside of cancer somewhere, for sure.
Kate Belany: And I want to hit on that community piece for a minute. So I know for me, it's really hard to ask for help.
Rozalyn Trego: and
Kate Belany: Do you find that you've figured out how to do that or is it your community just knows you so well and they jump in when they start to see that?
Rozalyn Trego: I would say it's both for me. also, prior to this, it was hard for me to ask for help. Mostly because I was like, well, I can just do it myself, you know, with
Kate Belany: Yeah.
Rozalyn Trego: mostly what I thought. I hit a breaking point for sure. And I was like, I don't even know what I need, you know? But so many people are asking, what do you need? as many things in life, comes down like the basic things. Like we needed to just be able to get healthy groceries and you know, people were sending us like gas cards and all these things. And it was such like a care for our basic need that allowed me to free up some brain space of like, I don't need to pour into the groceries and the, you know, those kinds of things or cleaning the house. had somebody hire a cleaning lady for us one day. So just
Kate Belany: incredible.
Rozalyn Trego: like those little, yes, right. I was like, why haven't I done this before? Yeah, that is my problem for asking for help. I didn't want to do that. But yeah, it just,
Kate Belany: Like now I'm gonna need this all on the weekly. Yeah.
Rozalyn Trego: I was, and not like out of a boasting, like I can handle it. It was just why do, why ask somebody else for what I can do easily, what I thought was easily. So I would say it's both. People understand. I have some really good girlfriends that are like, Roz. we're going to do this and you're not going to say no. And that's it. And that is sometimes what I need. And I would say those girlfriends have continually showed up. mean, five years is a long time to be in the hall of still listening to me to complain about cancer. so it's pretty beautiful to have people that continue to show up, even though the story's the same saga, you know. So without. community we would be in a pretty dark hole for sure.
Kate Belany: agree with that and we've had some time to reflect on that too and like it's been for us three years almost of people continuously showing up and it's crazy to me I'm like how you guys are just so amazing like how do you think of us all the time like I want to be more like that when we're finally out of the hole here because it's just it's so appreciative and I don't know how people know, because I was not someone that ever said, like, hey, help me with this. was just like people just knew.
Rozalyn Trego: Mm-hmm. Yeah, we had like a solid when he had multiple surgeries like Our grass was being cut. I didn't even know by who for
Kate Belany: Blah.
Rozalyn Trego: the longest time, know Just like little things that I was like, thank you our whole street at one point when he first got diagnosed Put blue lights outside of the whole street. So we came home one night. I know it was
Kate Belany: Ugh, I'm gonna cry. No.
Rozalyn Trego: Yeah, I mean it was wild. It was wild and like had a parade when he couldn't leave the house. I mean, just like so many little things that I could not have come up with. I did not and still don't have the brain space to do that with everything that we're pouring into Jake. So the fact that somebody else understood how to meet us, where we were at and people I don't even know that well or at all was just and continues to be wild and so humbling. But like you said, I
Kate Belany: That's insane.
Rozalyn Trego: still don't know how to ask for help. I'm working on it, you know, but I did, there was definitely a moment where I had to say out loud to myself, like, you need help with this and that's okay. And I had people that I knew I could confidently say, can you help me out, you know, with X, Y, Z. So yeah, that's a personal battle for sure.
Kate Belany: Okay, switching gears a little bit. Is there anything that surprised you about caregiving that like nobody really talks about?
Rozalyn Trego: So many things.
Kate Belany: Hahaha
Rozalyn Trego: I again would say specifically as a female caring for the male, I do think it's different. And everybody, know, it's hard to say just one thing, but everybody's story is different. And that's what I sometimes hate about the cancer world is it's just this word cancer, right? We had stage four colon cancer. So it was a specific kind. There's no cancer that's better. There's no cancer that's worse. But, underlyingly, the person who is caregiving has to be able to fill their cup. And I don't think I was very good at that. I still don't know if I'm very good at that, at filling my own cup or knowing when it needs to be filled before I hit a breaking point.
Kate Belany: Mm-hmm.
Rozalyn Trego: So, I think... Having caregivers that I immediately could talk to was helpful because honestly, specifically in the young cancer, you know, in your 30s, it's not a space that at the time a ton of people were talking about colon cancer, let alone
Kate Belany: Alright.
Rozalyn Trego: caregivers. And so that in and of itself, you know, we kept going up as a caregiver against doctors. quoting us things and I was like, I think you're talking about like a 60 plus year old. My husband's 30,
Kate Belany: Yes, yes.
Rozalyn Trego: 33 I think he was. So it was just that was, as a caregiver I had to keep saying in my brain, okay, I need to ask, but are you looking at him as a healthy, otherwise healthy 30 some year old male with life, like true life, like hopefully children, hopefully these other things, holding down a career. As a caregiver, I constantly had to bring those back into the picture because often doctors are, you know, using standards for much older human beings than my husband was. So I think that would be something that would have been helpful to know out of the gate of like, you're, you guys are young in this, but that means you need to look at this differently. And some doctors understood that to an extent, but I really felt like we had to advocate more. for us specifically.
Kate Belany: I'm so glad you said that. I didn't even think about that aspect, but I will never
Rozalyn Trego: Yeah.
Kate Belany: forget this story when... Ron was seeing a radiologist for the first time and we were talking about different, this is like years ago, we were talking about different radiation possibilities and what that might look
Rozalyn Trego: Thank
Kate Belany: like further down the road. And I'll never forget that doctor, like Ron was asking something about like, doesn't radiation cause secondary cancer? You should we be thinking about that? And I'll never forget the radiologist saying, you'd be lucky to have a secondary cancer. You need to be thankful. Yeah. You need to be thankful for where you're
Rozalyn Trego: on.
Kate Belany: at. And that has just stuck with me. And
Rozalyn Trego: Yeah.
Kate Belany: I think to your point of he's looking at him like he's your traditional patient that's super old and you'd
Rozalyn Trego: Mm-hmm. Mm-hmm.
Kate Belany: be lucky to get a secondary cancer, but Ron's similar to Jake. I mean, he was 36 when he was diagnosed.
Rozalyn Trego: Yeah.
Kate Belany: you're so right in the aspect where we do have to look at this differently. It's not just get you to next year. It's like, no, no,
Rozalyn Trego: Yeah.
Kate Belany: no, we want to live 10, 20, 30, 40, 50 years. So how do we need to look at and approach cancer treatment?
Rozalyn Trego: Right, right. Yeah, yeah. And that was just the question that we continually came back to. Like, you know, it's several different types of therapies and chemo's and ablation and radiation and resections and colostomy, colostomy reversal, like all these things that led to ultimately transplant. And it was like, every time one of these were being mentioned, it was like, but is this longevity or are you just doing this for like in the moment and this will get it
Kate Belany: Yes.
Rozalyn Trego: for like three months down the line then we have to do something else? Because I
Kate Belany: Yep.
Rozalyn Trego: continue and even up to this liver transplant I was like, is this the right choice? I mean, you always question that, right? With changing a big like wife surgery or chemo or whatever it may be. And it constantly, I mean, I looked at the doctor and I was like, we had three different liver surgeon and it was like, each one of them said, I know this is wild that I have to ask you this, but do you feel like this is a curative method that will invest in long-term life? And you know, they all kind of were like, yeah, like why else would you be doing it? I was like, I have to ask because nobody's straight up saying that.
Kate Belany: I'm so proud of you for asking because I'm afraid to ask that question because of what they'll tell I've too many times we've been told like you're not curative so
Rozalyn Trego: Yeah. Yeah.
Kate Belany: I'm proud of you for saying that and asking it
Rozalyn Trego: Thanks.
Kate Belany: in that way because like I haven't it's scary I don't want to hear the response
Rozalyn Trego: Yeah, yeah, yeah. that only happened within the last two years of this five
Kate Belany: Okay.
Rozalyn Trego: year journey. And it just got to the point where we all started a different point than you guys for sure. And I totally acknowledge that. So you have to be comfortable with saying what you are capable of also potentially getting back. And we were both, my husband and I were both at a point where we felt like we could ask those things. So for sure there were years where we weren't asking that. And then it just got to the point where we had enough things under our belt. We've done so many things to try to get to this point that now I was honestly kind of comes out of like being fed up, like figure it out better. There has to be something else, you know? And then doing, like I said, a lot of research on my part of. well you're not able to give this, we're gonna go somewhere else and we're gonna figure it out in a different way. So you kind of have to be a bulldog a little bit.
Kate Belany: Yeah, two questions. one, did you ever walk away from a doctor or a medical professional because of what they were saying?
Rozalyn Trego: Absolutely. I... What's a nice word to say? I really did
Kate Belany: Hahaha
Rozalyn Trego: not like his first oncologist. Great reviews, understanding of chemotherapy, not at all good bedside manner, not a creative thinker, not a problem solver, not looking outside of the box. not communicative and we did his first several rounds with her and it got to the point where his liver tumors kept popping back up and she really didn't have any other any other therapies but chemo to suggest. While I knew that there was lots of other things out there I think her capacity for being able to do any of those things was pretty minimal. And when I asked her about specifically the HAI pump, she was like, well, I mean, you could do that. And I'm like, okay, like I'm looking to you to give us, yeah,
Kate Belany: Tell me more.
Rozalyn Trego: or refer us on or, know, something there is minimal referring on to other doctors in this field, which is wild. So yeah, we we had one video chat with her to kind of end our time with her and said, we're gonna move on to, at the time it was Ohio Health is who we were with and Ohio State is who we went to. And we moved on and weirdly the doctor at Ohio State knew that doctor at Ohio Health. And he was okay. And then we ended up going to Cleveland Clinic. We also went to MSK. And I would say MSK and Cleveland Clinic are in my eyes like cream of the crop for treating Jake in multiple modalities and not just streamlining and just like surgical or radiation. I felt like having a tumor board be a part of it was a total game changer. And so yeah. yet you eventually get your, you get off your training wheels of caregiving and you're like, you know, I told Jake at a certain point, cause Jake is a people pleaser and he doesn't want confrontation. And I said, you have to walk into these like an interview, like you're interviewing the doctor for you. And if they don't pass the test, you move on because ultimately we're paying for them. We've done our research. I'm not sticking around for somebody who's not advocating for you. And And he understood that and he's had, you we've, we've set some patient care referrals of not great care and mostly from, from, I would never want somebody else to go through what we went through mentality, not ever to be facetious, but just in, you are a doctor or a professional in a care position and people are coming to you and you have to be on. that's what you're getting paid for. And I know everybody has bad days, but I don't really care when it comes to my husband's health, you know? And so yeah, there was one specific doctor we walked away from. There was a couple doctor issues, but the majority of the time we were surrounded by pretty good care.
Kate Belany: you say it's just a feeling when you get to a doctor that you know is on your side or was there something specific that you were looking for when you were meeting with them?
Rozalyn Trego: Both, definitely a feeling, I know feelings can be emotionally attached. And sometimes they're just a detached person, but they are really knowledgeable. And so I'm okay with that, but if it gets to the point where you're not able to see the person side of Jake also, and you're only treating him as this patient, that's where we had a problem. I'll never forget the liver, surgeon who he just recently had a liver transplant with was like, yeah, the liver is such a beautiful organ. I'm like, cool. I'm glad somebody thinks that and I'm glad you're the one operating on my husband. Because like,
Kate Belany: Yeah.
Rozalyn Trego: no, that's not my jam. But I'm glad there's people that exist that care enough for that kind of thing. So it's like, it is with what they say, it's how their staff reacts, how their nurses talk about them. I mean, you kind of have to always be on like a swivel of like, Yes, I know you're a good doctor, but that doesn't mean that's where your care ends. I need you to also be a whole person, human being behind the knowledge. So it's just been like finding a balance of what makes sense for us. And I would say we've generally speaking, there are some really great doctors out there that are amazing and there are some not so great as well.
Kate Belany: I will say like one of the green lights that we've noticed just recently is when they mentioned something like textbook says we shouldn't do this. but now that we've gotten to know you and we've watched you and we've seen your journey, like we're gonna try it. And I that's
Rozalyn Trego: Yes.
Kate Belany: always been a green light for us. like, okay, you're seeing him as a person and as somebody that can handle this and as a 39 year old now, not a 73 year old that's looking for the next three months to your point.
Rozalyn Trego: Yeah. Yeah. Yeah. Yeah. The reality is the body is incredible. I mean, it can do wild things. So you have to be as a doctor, a problem solver and creatively. And sometimes that is looking outside of the box, especially in the stage 4 colon cancer. ⁓ I would say, and maybe you felt like this too, but there were some doctors that were excited by the fact that he was younger because it allowed them to do some ⁓ more out things than what they would do with like a 60 year old. So that was
Kate Belany: Yeah.
Rozalyn Trego: also a green light, like they were excited for lack of a better term to be like we could try this and we could try this, you know. So that was always like good to hear too that there was was options which is not always what you get in this world.
Kate Belany: No, I totally agree. so just to share with everybody that's listening. Jake's stage four cancer, colon cancer, where did the tumors metastasize? Do you mind sharing that a little bit? Is it just in the liver or did it go to other places too? Okay.
Rozalyn Trego: Sure, just the liver, thank God for that. So colon to the liver, yeah.
Kate Belany: Okay, and then I know liver transplants are like the newest and greatest ⁓ solution ⁓ to ⁓ a metastasis from colon cancer. I think a lot of people are going be interested in hearing a little bit more about that. Like, why did you guys decide to go that route? Because it is drastic, of course, and it's a lifestyle change for sure. So what
Rozalyn Trego: Yeah. Yeah.
Kate Belany: led you to that decision? ⁓
Rozalyn Trego: ⁓ a lot of things. I had been asking about liver transplant, I would say probably about a year to two years after his diagnosis. ⁓ I had a couple of friends in the Colontown community or just in the colon cancer community that were like, Hey, you should look at this. You should consider this. That still seems so terrifying to us. ⁓ he was responsive to chemo. And so there were several stretches where he would have, he'd get to six months and be deemed. cancer-free and then it would pop right back up. So we had multiple moments of that where he'd get three months, six months, and then something else would pop up. We'd do an ablation and something else would pop up and then there were two. Then he got an HAI pump and then he got more resections, ablations, two different types. He SBRT radiation and then he had Y90 radiation right before transplant. So we felt like we really had tried. everything that was out there and what I don't know about you guys but what I've often heard is surgery, we're physically removing the tumors, the cancer is really still today the best case scenario.
Kate Belany: standard.
Rozalyn Trego: Yeah and so it was to the point where we were like There's a stat out there of like 70 % of colon cancer patients have a recurrence after a liver transplant. So that was one that was really pushing us to not, after speaking with other doctors, 70%. Yeah.
Kate Belany: it's 70 wow okay
Rozalyn Trego: That has significantly decreased in probably the past couple of years, but there's not case studies out yet that have been published. stating that it's more closer to 50%. I mean, based on the research and reading it, you can see that, but it's not yet done with a case study or case studies. So that was ultimately what led us to saying, we've done all these things to his liver anyways, that is not making it a great functioning liver. It keeps popping up in the liver. If the liver is the continual problem, then we needed to remove it. And the doctors pretty much agreed on all of that. We had several doctors that we really trusted all saying the same thing.
Kate Belany: Mm-hmm.
Rozalyn Trego: And so we really thought about it. It was like, okay, also your liver has been through a war zone for five years now. You're going to probably need a transplant at some point in time. It's probably better to do it now than it is to do it when you are 60. and it's harder to recover and whatnot. So, you know, we, as terrifying as it was, it was the first time in a while that I felt we had a little bit of hope. Not to say we didn't before, but like true hope is different than the fabricated hope that I keep telling myself. It was really like, I feel like this is really a space that we can get to. hopefully being curative, which I hadn't felt like in probably since his diagnosis, honestly. And I still don't know if I really feel that now, but I feel more hopeful with that. So that's what ultimately led us there. It's terrifying to think about leading up to it is a lot of work and probably the worst Jake has ever physically been before having surgery, but that is what is changing.
Kate Belany: Okay.
Rozalyn Trego: the 70 % to 50 % is that they are blasting you with multiple therapies prior to getting a transplant. So the good news that we did receive is that his liver, his previous liver was deemed cancer free when it was taken out, meaning all of those therapies we did up until the transplant actually did its job, which then gives
Kate Belany: No way.
Rozalyn Trego: you a better margin. Yeah, afterwards, hopefully not. having it pop back up, but there's still that potential. yeah, we really put him through the wringer to get to that point and are very
Kate Belany: Yeah.
Rozalyn Trego: thankful it was an option.
Kate Belany: I can imagine. Well, thanks for sharing that. And it's awesome to hear that you guys have gone through it. And it sounds like you're waiting on scans now post
Rozalyn Trego: Good.
Kate Belany: operation, but ultimately just in a much better place with a lot of hope. So thanks for sharing that.
Rozalyn Trego: Yeah.
Kate Belany: I want to be mindful of your time. So I have one more question for you if you're open to it. If you could go back to the beginning of this journey, what would you tell yourself as a caregiver?
Rozalyn Trego: I don't know. mean, what I tell myself daily and what I tell my children is you can be brave and you can do hard things. That's it. That is all that I have most days. Sometimes to just get out of bed. But yeah, I would say those two things and just lean into people that love you. I'd say a couple of things. I don't think I could say just one. lean into your community and this will absolutely flip your marriage upside down. And this is what you signed up for. You you said for better for worse and you're gonna have to figure it out. And that's where we're at. I would say nothing like overtly super positive, but just like, you know, you can do this and you've got people around you that can. and can see you through it. So I am the most undecisive person, so saying one thing is wild for me. I would probably write myself a paragraph. But
Kate Belany: That's okay, you could say a Fair.
Rozalyn Trego: yeah, yeah, I would say those couple of things for sure.
Kate Belany: Okay, awesome. Well, thanks so much, Roz. Really appreciate having you on here and just sharing your story. I just know it'll mean so much to people to hear your journey. So thank you.
Rozalyn Trego: Thank you. I appreciate you carving out the space in the world for this. You know, it's a club you never want to be a part of, but it's also like a really beautiful, encouraging club sometimes too. So thank you
Kate Belany: Agree.
Rozalyn Trego: for being just kind of a light in a really weird cave that you're often living in. No, we're in
Kate Belany: We don't want to be in it, but we're in it.
Rozalyn Trego: it. We're in it. But you can pick your head out every now and then. So thanks for being that today.
Kate Belany: Agreed.
Rozalyn Trego: Thank you for having me. I'm so excited.
Kate Belany: Okay, so if you wouldn't mind Roz, do you mind sharing a little bit about what life was like pre-cancer diagnosis?
Rozalyn Trego: Yeah, pre-cancer diagnosis, was, you know, both of us just in our 30s working hard, kind of that American dream. We bought a house, we were fixing an old house that's now almost 100 years old. So that was our big project. We were working on that together, you know, and just taking vacations and eventually wanting to plan a family. COVID happened. And so we were like, let's pause until that happens. And then cancer kind of took it away from there. So really, you know, living a pretty good life up until that point. So can't really complain until then.
Kate Belany: Cool. So what was it like? Can you take us back to the day where you found out that Jake had cancer?
Rozalyn Trego: Yeah, I mean, I will forever have that physically imprinted on my brain. He was having a lot of pain and for a couple of days he actually was misdiagnosed with having maybe some like bowel obstruction, but not necessarily anything larger than, know, saying cancer was not like in the realm. But he continued to have pain.
Kate Belany: course.
Rozalyn Trego: And so we went to, I kind of pushed him like, think we need to go to the ER. and we were there.
Kate Belany: And when you say pain, what do you mean? Was it like abdominal pain or what was that like?
Rozalyn Trego: It was shooting pains up through his groin into his abdomen. And he's not a guy who complains a lot. So it was very obvious that there was something wrong. He also had kind of a history of needing to get GI work done but didn't do it. So kind of putting off the need. And ironically, we actually had a GI appointment scheduled for the week after he actually got diagnosed So, you know trying to be not really preventative but address something and then and then all this happened. So Yeah, mostly was pain. I Occasionally he would have blood in his stool, but the prominent problem was the pain So he wants to be yeah, go ahead
Kate Belany: And did you know about any of this? Like the blood in the stool? I'm assuming you know about the pain, but did you know he was going through anything at the time?
Rozalyn Trego: I, I knew that his bowel issues were not normal and I had known that for years and there was a lot of conversation of you should do this, you should do this for yourself. And then I finally made the GI appointment. but he has a history of this. father has history of issues, not colon cancer, but just, like IBS, sort of issues. So. I had wanted him to go and then it finally got to the point where like we need to do this and then by then it was honestly too late. So yeah, there were there were definitely looking back signs and symptoms for a long time. I would say prior to this. Yeah. But yeah, definitely remember that visibly took him to the ER. We were there hours waiting on the scans. It was like 1 30 in the morning when he finally got diagnosis and I do really appreciate caretakers like nurses and who are gentle and she was you know like I'm sorry but I'm pretty sure this is a tumor and it's in his colon and you need to emergently go to the hospital and so we went to the hospital and then the next day he had surgery you know diagnosed stage 4 colon cancer it had spread to his liver So it was actually like in his colon. I think it was like three centimeters. And then there were multiple lesions, like 19, 20 on his liver at the time. And so we just took it from there.
Kate Belany: I can't imagine being in that scenario and having to react so quickly. So did you even have time to think about a surgery or you're just like, okay, we'll just we'll do whatever you guys say. This is.
Rozalyn Trego: Yeah, I mean, we were at the mercy of ⁓ just praying that we were at the right place that we needed to be. I had this call of wanting to transfer him to ⁓ OSU, being a bigger hospital than the hospital we were at, ⁓ which were right within 20, 30 minutes of each other. ⁓ But at the time, it was hard to find a hospital bed. ⁓ So they were like, we have one here. at Ohio Health We can do this tomorrow, get it going. We did connect with the surgeon and really liked him. I did my Google searching really quickly of who is the surgeon? What does all this mean? I asked a thousand questions, which will forever be who I am. And we were like, okay, getting it out was what made sense to us. And then what comes next when you hear cancer is typically chemo. And that's what they were saying was next step. so he had a Colostomy actually put in first and then We did some chemo came back for surgery and then eventually had a Colostomy reversal and more of the kidney to err the liver taken out and a Portion of his colon taken out as well. So, you know just do the next best thing is really, really what it was from there on.
Kate Belany: So did you know anything about cancer prior to this? Because I know when Ron was diagnosed and they told us stage four, was like, what does that mean? Like I had
Rozalyn Trego: Yeah.
Kate Belany: no idea. Were you aware or were you just like, we just need to get the job done?
Rozalyn Trego: I knew four was not good. And so I think with that was some naiveness where I didn't know enough to be like, what does that actually mean? You know, to like the lay person, when you say stage four, you're like, well you're terminal.
Kate Belany: Mm-hmm.
Rozalyn Trego: And so then down the line after a lot of research and just being in the community of caregivers. I understood that it doesn't have to be a terminal diagnosis and it's come a long way. But initially I literally was numb. I didn't know what to think. I just knew we had to do whatever was next and whatever would get him healthy. And like I said, the research just never stopped from there. I just started pouring into that because that's the only thing that made sense to me.
Kate Belany: Yeah, think like when you're a cancer diagnosis takes so much of your control away, or at
Rozalyn Trego: Yeah.
Kate Belany: least that's how I felt and very similar, like, the only thing I can control is what I learned and the conversations that we have and the challenges that we can place on, you know, asking the right questions. So totally
Rozalyn Trego: you
Kate Belany: get wanting to be fully prepared and understand what's next. I can't imagine being in your scenario and having to react that quickly because we had a while, like we got the diagnosis and then. Our first step was chemotherapy. So we didn't have to jump into any emergency surgery, thank goodness.
Rozalyn Trego: Mm-hmm.
Kate Belany: But I just was so unaware of staging, just had no idea
Rozalyn Trego: Yeah.
Kate Belany: what any of that meant. And I think I was just in shock for a really long time. I didn't react, didn't cry, didn't react for a really long time. And then I was like, once I kind of accepted it.
Rozalyn Trego: Yeah. Yeah.
Kate Belany: So how did life change once so you had the surgery, you get back home, how did your life change? Because I can't imagine you just went back to living the way you were. What was that like?
Rozalyn Trego: Right. Yeah, yeah, it was wild. We were in the hospital for a little while and I mean, immediately our community of people stepped up and that was huge for us. You know,
Kate Belany: Okay.
Rozalyn Trego: we had a dog at home. know, luckily, honestly, that we didn't have kids at the time. I don't know how people with kids, you guys with kids, managed it. It's wild to me. I think for our story, it was... meant to be not right now because of everything that's happened. But yeah, I mean, really after that, was like, I'm a caregiver in my work by nature. You know, working with little kids who are neurodiverse, you're just constantly advocating for an underdog and wanting the best for them and researching ways to find better ways for them, their needs to be met. So really that translated very easily over to Jake, what I will also say is that it caused me to change and we then didn't become husband and wife really. It was like caretaker, caregiver, and patient. And that's really the space, honestly, that we're still living in. You know, we have glimpses of a marriage, but the majority is, you know, he was in such a... depression also of it being his physical body that I was like, well, somebody's got to do it, you know? And so I was like, I'll research, I'll make sure you're comfortable, make sure you're eating all the best meals and, you know, reading every single food label and, you know, just to the nth degree, which is exhausting. But, you know, that's what we signed up for. You know, we did say for better or for worse and it was... worse. So we were here and we showed up and
Kate Belany: or worse.
Rozalyn Trego: you know, I didn't know what else to do other than keep finding things that would help and make it better and be the very best care for him as well.
Kate Belany: So in that search, what did you find or was there anything that was specific to a lifestyle change that you kind of picked up on and decided to implement for the two of you?
Rozalyn Trego: Yeah, I would say so, Colontown has been a great community. It was at the time on Facebook and now it's its own website. Those people were so helpful because I wanted to know all the answers to my specific questions. I didn't want to know the downfall of a lot of things. I just wanted to know immediately, like, meet me where I'm at. Here's what I need. I also had a good friend who ⁓ stepped alongside of me. She actually herself was Stage 4 colon cancer ⁓ and has since passed, but incredibly smart individual. And she was just filtering all of these things to me ⁓ from doctors to, ⁓ you know, adjuvants therapies and all these other things. ⁓ So, I mean, it was really, ⁓ it was finding a community ⁓ that ⁓ kind of twofold that understood the Stage 4 colon cancer world because they were in it, but then also a community that could just show up who were friends and family and knew, you know, kind of what my soul needed more than just the medical side of what I needed answered. So that organically happened like wildly fast. And a GoFundMe was set up and all that kind of stuff and people were just like really pouring into us. So For somebody who loves to give, and that is like a love language for me, it was really hard to receive and like, I'm so sorry I can't write thank you letters to everybody. I'm overwhelmed. But thank you. I'm so grateful. But yeah, hands down a community is what honestly got us through any of this, both for myself and for Jake.
Kate Belany: Alright, so you said a couple of things I want to hit on. So one colon town. For listeners
Rozalyn Trego: Mm-hmm.
Kate Belany: that don't know what colon town is, do you mind sharing a little bit more on what the app is and what it does?
Rozalyn Trego: Yeah, it is a network of people and caregivers and patients going through colon cancer to some varying degree. The curators of it essentially have you kind of sign up and explain why you want to be a part of it and then they filter you into groups that would be either by location, by diagnoses. So you pretty immediately have people that you can reach out to who are actively going through it. It's very much filtered, so it's not meant to be opinionated, I would say. It's meant to be factual and just really be a space where you can have a community of understanding patients and caregivers. Jake never got on it, doesn't probably even know how it works, and that's fine. That was my role of just being the researcher and being the one that connected to people. it also, what I do love is that there were a lot of doc talks on there specifically for us, local doctors, doctors that we've seen, that are prominent in the field.
Kate Belany: Wow, that's helpful.
Rozalyn Trego: Yeah. That do, you know, national speaking, engagements. So seeing some of those things was really helpful and leading us in certain directions. But it's great. Sign up if you're in the, the colon cancer world.
Kate Belany: Okay, awesome. Yeah, I think it's helpful to know what other opportunities are out there. And it's so funny. Our stories are so similar. Ron has never touched it. I feel like Ron and Jake are very similar in the sense of
Rozalyn Trego: Bye.
Kate Belany: like, Ron was like, I don't want to know anything. I have another question for you too on this. So we were really lucky, I think in the sense where no one gave us a prognosis, like no one told Ron or supposed to live or what the stats were. But of course me
Rozalyn Trego: Mm-hmm. Mm-hmm.
Kate Belany: as a detective, I was immediately online
Rozalyn Trego: Yeah.
Kate Belany: and saw all that. But Rod is still blissfully unaware and I think that's really helped him. Was Jake pretty similar?
Rozalyn Trego: Yeah, yeah, I would say for probably a couple of years, just really going through the motions, which honestly, like if somebody I don't know, I don't think I could have done that. But that's my brain, not his.
Kate Belany: Yep, same.
Rozalyn Trego: And it was self preservation for him. And I was like, that's totally fine. We did get to a point where I then was like, I want you to have self advocacy for yourself to own the questions to understand how your body's working. Once we got into it, I would say probably like two, three years in, where we
Kate Belany: Mm-hmm.
Rozalyn Trego: had some spaces to just step back for a second and take some of the caregiver hat off or down for a moment. And he wanted that to an extent. He still to this day kind of will put the wool over his eyes a little bit and buckle down and just try to get through. And that's fair,
Kate Belany: Mm-hmm.
Rozalyn Trego: where I still on the back end, I might look something up and maybe not even tell him because I know there's something he might not want to
Kate Belany: See
Rozalyn Trego: hear. And then when he tells me something, I'm like, well, this could be because, you know,
Kate Belany: Yeah.
Rozalyn Trego: so yeah, I would, I would definitely say he was just kind of, let's just get it done and figure it out. is hard.
Kate Belany: And how did, so how did going back to work impact you? Because that had to have been challenging too. Like, were you able to make his appointments or how did you balance a real life with this new cancer life that y'all have?
Rozalyn Trego: Yeah, I mean, prior to the diagnoses, I almost never took a sick day. I am kind of a workhorse, but I love what I do. I had the capacity to be able to do that if I needed to, and I used it to the full extent once everything happened with G. I really am blessed by an incredible community. mean, 99 % female. who are also caregivers and advocates for the neurodiverse population. Several who have had family members with cancer of varying degrees or themselves have had it. So they actually just wrapped their arms around us, you know, it like no questions asked. We were still semi-virtual sometimes, so I was able to kind of make some appointments around that, so I would be working. you know, if he was getting chemo for six hours, I would be sitting with him and working on my computer. So just, you know, you just kind of like puzzle piece your life together around it. The biggest, I never had to take FMLA until this year with his liver transplant, which I took six weeks off for. So
Kate Belany: Okay.
Rozalyn Trego: it was healing for me in some ways to go back. because I love my littles, I love my community, and honestly, it was just a distraction. It was a way for me to allow my soul to come back into my body and ground myself a little bit, even though it was like, our classroom can be insane. It was a different kind of chaos than my personal life. So it was just finding the balance of work and home life. as always as hard, but it definitely was different with navigating appointments and whatnot. Luckily I had summers off and there were a couple surgeries that fell over the summers. So that was also helpful. But it was, yeah, it's just constantly like a card game. Like how can we fit in the things that need to be done and maintain my job and all that sort of stuff.
Kate Belany: Yeah, yeah, I can totally relate to the getaway that you get from work and the reprieve. Even if work is stressful, it's not as stressful as normal life. Maybe you experienced this too, but after Ron's chemotherapy appointments, like obviously he was on the couch for several days afterwards. And I was going back to work and I had so many coworkers ask me like, why are you here? Like you can work remotely or do what you need to do. And my response was always like, there's nothing I can do at home, but feel bad for. Ron's situation, like I can't do anything right now. He just has to get through those first couple of days. So
Rozalyn Trego: Yeah.
Kate Belany: I'm not sure if you felt similarly to that, but agree with you when
Rozalyn Trego: 100.
Kate Belany: you say like, it was a good reprieve to, it is a good reprieve to like have something else to focus on from time to time.
Rozalyn Trego: Yeah, yeah, because you know, he's, as you know, like they're physically exhausted, but I'm just sitting there and my brain is going a
Kate Belany: Yeah. Yes.
Rozalyn Trego: thousand miles a minute. And so if I don't fit, I'm a person who physically needs to move every so often, you know, from sitting there and chemo for six hours. so my reprieve would just be like walking the dog on the trail. We have a trail that goes right by our house or, you know, work for sure. So it's just, I knew that of myself, like, Hey, I have to ground myself somehow. And just sitting here watching you be miserable is not helping either of, and for Jake, most of the time he was sleeping. So was
Kate Belany: Yep.
Rozalyn Trego: like, I'm really not helpful to you at all right now. So, and we both agreed that we felt comfortable with me going back. You know, I asked a thousand times, are you sure you're good? You're good, you're good. Do you need anything?
Kate Belany: Yep.
Rozalyn Trego: And he was like, yeah. So we just fell into that.
Kate Belany: He's like, yeah, leave me alone.
Rozalyn Trego: Yeah. basically.
Kate Belany: And y'all have been on this journey for a long time and I know for us initially I was like I'll do everything and we're just gonna power through and we're gonna get to the finish line and whatever I have to do to get there cool. And then we started to realize stage four is a different beast. It's not really a race to the end of the finish line because there may never be a final. we did it type of moment. And so I had to change things that I did to make myself feel, I mean, to keep myself going as a caregiver. Did you
Rozalyn Trego: Mm-hmm.
Kate Belany: ever have that same realization? And did you have to, like, what did you do to keep yourself going? Cause it's totally a marathon and not a sprint in this journey.
Rozalyn Trego: Yes, 100%. I think I'm still figuring that out. You know, right now what it is that I need, I know community, good community that understands where I'm at and I can say anything to, specifically women. It's helpful. There are some women that are really helpful in the colon cancer world like yourself that get it and when they get it, that's so helpful. But also just, I mean, the phrase I keep using for myself is we can pivot. We just keep pivoting because you just never know. I mean, it's been five years for us and notoriously things have popped up. And it just is, okay, then we do the next best thing. Like that's the only thing I have to say in our life is we just have to do the next best thing. But also find, it's such a, juxtaposition of like it is a terribly beautiful thing. It is so terrible that cancer exists, but it is so beautiful how much from my perspective it makes you just be appreciative of like leaves on the trees. The sun is shining, you know those little things that I think as a patient, I know Jake still struggles with that. I think he's very much so in depression a lot of the time and I can find myself being in that too. But I just can't live there. It's just not a space that I can live in. so finding those little things, if it's, know, the kisses from my dog or a friend dropping off some food and we're sitting outside for a little bit. I I don't require a whole lot to replenish me and I do love the simple things. And so I think finding these small joys, is the only way you can keep going because it is so, dark and so, terrible most of the time. But there are these pockets of really beautiful moments that make you appreciate working really hard to be healthy or that you get to have, you know, a window of opportunity, which in the cancer world isn't always happening. But yeah, I would say just finding finding true joy. which for me is working with my hands and being around the people that I love and just intentional time with people that care. So it's... Go ahead. No, go on.
Kate Belany: did you... I need to cut you off... did you always practice gratitude prior to cancer? Because it sounds like you kind of reflect on a daily basis and maybe think
Rozalyn Trego: and
Kate Belany: about those things that you're appreciative of. Were you always like that or did cancer change that for you?
Rozalyn Trego: I think, you know, nature versus nurture and there were some things that happened in my life that were dark. There's things that happened in Jake's life that were dark prior to this. And you just, to me, what I said to myself, probably as a college student, was which way am I choosing to turn? Am I choosing to find some sort of joy or am I just gonna let this run my life? And so that has continued to be the posture. It's continued to be grounding for me of this all really sucks, but I have to find a silver lining or eventually find, I don't, I hate positive, you know, toxicity of just being super positive. So I'm not that person, but finding these little things has always helped ground me. Like, wow, everything can be crazy. But like this flower continues to bloom every year and it sounds really fluffy, you know, there are honestly people watching people interact and you know, seeing this person do something so kind and humbling for this other person inspires me. Like, well, certainly they're going through that and they're willing to, a lot of people have just been inspiring to me that have helped us out who have so much other things going on as well. yet they're still finding a space to pour into us, which blows my mind. So I would say those little things continue to ground me and know that there's life outside of cancer somewhere, for sure.
Kate Belany: And I want to hit on that community piece for a minute. So I know for me, it's really hard to ask for help.
Rozalyn Trego: and
Kate Belany: Do you find that you've figured out how to do that or is it your community just knows you so well and they jump in when they start to see that?
Rozalyn Trego: I would say it's both for me. also, prior to this, it was hard for me to ask for help. Mostly because I was like, well, I can just do it myself, you know, with
Kate Belany: Yeah.
Rozalyn Trego: mostly what I thought. I hit a breaking point for sure. And I was like, I don't even know what I need, you know? But so many people are asking, what do you need? as many things in life, comes down like the basic things. Like we needed to just be able to get healthy groceries and you know, people were sending us like gas cards and all these things. And it was such like a care for our basic need that allowed me to free up some brain space of like, I don't need to pour into the groceries and the, you know, those kinds of things or cleaning the house. had somebody hire a cleaning lady for us one day. So just
Kate Belany: incredible.
Rozalyn Trego: like those little, yes, right. I was like, why haven't I done this before? Yeah, that is my problem for asking for help. I didn't want to do that. But yeah, it just,
Kate Belany: Like now I'm gonna need this all on the weekly. Yeah.
Rozalyn Trego: I was, and not like out of a boasting, like I can handle it. It was just why do, why ask somebody else for what I can do easily, what I thought was easily. So I would say it's both. People understand. I have some really good girlfriends that are like, Roz. we're going to do this and you're not going to say no. And that's it. And that is sometimes what I need. And I would say those girlfriends have continually showed up. mean, five years is a long time to be in the hall of still listening to me to complain about cancer. so it's pretty beautiful to have people that continue to show up, even though the story's the same saga, you know. So without. community we would be in a pretty dark hole for sure.
Kate Belany: agree with that and we've had some time to reflect on that too and like it's been for us three years almost of people continuously showing up and it's crazy to me I'm like how you guys are just so amazing like how do you think of us all the time like I want to be more like that when we're finally out of the hole here because it's just it's so appreciative and I don't know how people know, because I was not someone that ever said, like, hey, help me with this. was just like people just knew.
Rozalyn Trego: Mm-hmm. Yeah, we had like a solid when he had multiple surgeries like Our grass was being cut. I didn't even know by who for
Kate Belany: Blah.
Rozalyn Trego: the longest time, know Just like little things that I was like, thank you our whole street at one point when he first got diagnosed Put blue lights outside of the whole street. So we came home one night. I know it was
Kate Belany: Ugh, I'm gonna cry. No.
Rozalyn Trego: Yeah, I mean it was wild. It was wild and like had a parade when he couldn't leave the house. I mean, just like so many little things that I could not have come up with. I did not and still don't have the brain space to do that with everything that we're pouring into Jake. So the fact that somebody else understood how to meet us, where we were at and people I don't even know that well or at all was just and continues to be wild and so humbling. But like you said, I
Kate Belany: That's insane.
Rozalyn Trego: still don't know how to ask for help. I'm working on it, you know, but I did, there was definitely a moment where I had to say out loud to myself, like, you need help with this and that's okay. And I had people that I knew I could confidently say, can you help me out, you know, with X, Y, Z. So yeah, that's a personal battle for sure.
Kate Belany: Okay, switching gears a little bit. Is there anything that surprised you about caregiving that like nobody really talks about?
Rozalyn Trego: So many things.
Kate Belany: Hahaha
Rozalyn Trego: I again would say specifically as a female caring for the male, I do think it's different. And everybody, know, it's hard to say just one thing, but everybody's story is different. And that's what I sometimes hate about the cancer world is it's just this word cancer, right? We had stage four colon cancer. So it was a specific kind. There's no cancer that's better. There's no cancer that's worse. But, underlyingly, the person who is caregiving has to be able to fill their cup. And I don't think I was very good at that. I still don't know if I'm very good at that, at filling my own cup or knowing when it needs to be filled before I hit a breaking point.
Kate Belany: Mm-hmm.
Rozalyn Trego: So, I think... Having caregivers that I immediately could talk to was helpful because honestly, specifically in the young cancer, you know, in your 30s, it's not a space that at the time a ton of people were talking about colon cancer, let alone
Kate Belany: Alright.
Rozalyn Trego: caregivers. And so that in and of itself, you know, we kept going up as a caregiver against doctors. quoting us things and I was like, I think you're talking about like a 60 plus year old. My husband's 30,
Kate Belany: Yes, yes.
Rozalyn Trego: 33 I think he was. So it was just that was, as a caregiver I had to keep saying in my brain, okay, I need to ask, but are you looking at him as a healthy, otherwise healthy 30 some year old male with life, like true life, like hopefully children, hopefully these other things, holding down a career. As a caregiver, I constantly had to bring those back into the picture because often doctors are, you know, using standards for much older human beings than my husband was. So I think that would be something that would have been helpful to know out of the gate of like, you're, you guys are young in this, but that means you need to look at this differently. And some doctors understood that to an extent, but I really felt like we had to advocate more. for us specifically.
Kate Belany: I'm so glad you said that. I didn't even think about that aspect, but I will never
Rozalyn Trego: Yeah.
Kate Belany: forget this story when... Ron was seeing a radiologist for the first time and we were talking about different, this is like years ago, we were talking about different radiation possibilities and what that might look
Rozalyn Trego: Thank
Kate Belany: like further down the road. And I'll never forget that doctor, like Ron was asking something about like, doesn't radiation cause secondary cancer? You should we be thinking about that? And I'll never forget the radiologist saying, you'd be lucky to have a secondary cancer. You need to be thankful. Yeah. You need to be thankful for where you're
Rozalyn Trego: on.
Kate Belany: at. And that has just stuck with me. And
Rozalyn Trego: Yeah.
Kate Belany: I think to your point of he's looking at him like he's your traditional patient that's super old and you'd
Rozalyn Trego: Mm-hmm. Mm-hmm.
Kate Belany: be lucky to get a secondary cancer, but Ron's similar to Jake. I mean, he was 36 when he was diagnosed.
Rozalyn Trego: Yeah.
Kate Belany: you're so right in the aspect where we do have to look at this differently. It's not just get you to next year. It's like, no, no,
Rozalyn Trego: Yeah.
Kate Belany: no, we want to live 10, 20, 30, 40, 50 years. So how do we need to look at and approach cancer treatment?
Rozalyn Trego: Right, right. Yeah, yeah. And that was just the question that we continually came back to. Like, you know, it's several different types of therapies and chemo's and ablation and radiation and resections and colostomy, colostomy reversal, like all these things that led to ultimately transplant. And it was like, every time one of these were being mentioned, it was like, but is this longevity or are you just doing this for like in the moment and this will get it
Kate Belany: Yes.
Rozalyn Trego: for like three months down the line then we have to do something else? Because I
Kate Belany: Yep.
Rozalyn Trego: continue and even up to this liver transplant I was like, is this the right choice? I mean, you always question that, right? With changing a big like wife surgery or chemo or whatever it may be. And it constantly, I mean, I looked at the doctor and I was like, we had three different liver surgeon and it was like, each one of them said, I know this is wild that I have to ask you this, but do you feel like this is a curative method that will invest in long-term life? And you know, they all kind of were like, yeah, like why else would you be doing it? I was like, I have to ask because nobody's straight up saying that.
Kate Belany: I'm so proud of you for asking because I'm afraid to ask that question because of what they'll tell I've too many times we've been told like you're not curative so
Rozalyn Trego: Yeah. Yeah.
Kate Belany: I'm proud of you for saying that and asking it
Rozalyn Trego: Thanks.
Kate Belany: in that way because like I haven't it's scary I don't want to hear the response
Rozalyn Trego: Yeah, yeah, yeah. that only happened within the last two years of this five
Kate Belany: Okay.
Rozalyn Trego: year journey. And it just got to the point where we all started a different point than you guys for sure. And I totally acknowledge that. So you have to be comfortable with saying what you are capable of also potentially getting back. And we were both, my husband and I were both at a point where we felt like we could ask those things. So for sure there were years where we weren't asking that. And then it just got to the point where we had enough things under our belt. We've done so many things to try to get to this point that now I was honestly kind of comes out of like being fed up, like figure it out better. There has to be something else, you know? And then doing, like I said, a lot of research on my part of. well you're not able to give this, we're gonna go somewhere else and we're gonna figure it out in a different way. So you kind of have to be a bulldog a little bit.
Kate Belany: Yeah, two questions. one, did you ever walk away from a doctor or a medical professional because of what they were saying?
Rozalyn Trego: Absolutely. I... What's a nice word to say? I really did
Kate Belany: Hahaha
Rozalyn Trego: not like his first oncologist. Great reviews, understanding of chemotherapy, not at all good bedside manner, not a creative thinker, not a problem solver, not looking outside of the box. not communicative and we did his first several rounds with her and it got to the point where his liver tumors kept popping back up and she really didn't have any other any other therapies but chemo to suggest. While I knew that there was lots of other things out there I think her capacity for being able to do any of those things was pretty minimal. And when I asked her about specifically the HAI pump, she was like, well, I mean, you could do that. And I'm like, okay, like I'm looking to you to give us, yeah,
Kate Belany: Tell me more.
Rozalyn Trego: or refer us on or, know, something there is minimal referring on to other doctors in this field, which is wild. So yeah, we we had one video chat with her to kind of end our time with her and said, we're gonna move on to, at the time it was Ohio Health is who we were with and Ohio State is who we went to. And we moved on and weirdly the doctor at Ohio State knew that doctor at Ohio Health. And he was okay. And then we ended up going to Cleveland Clinic. We also went to MSK. And I would say MSK and Cleveland Clinic are in my eyes like cream of the crop for treating Jake in multiple modalities and not just streamlining and just like surgical or radiation. I felt like having a tumor board be a part of it was a total game changer. And so yeah. yet you eventually get your, you get off your training wheels of caregiving and you're like, you know, I told Jake at a certain point, cause Jake is a people pleaser and he doesn't want confrontation. And I said, you have to walk into these like an interview, like you're interviewing the doctor for you. And if they don't pass the test, you move on because ultimately we're paying for them. We've done our research. I'm not sticking around for somebody who's not advocating for you. And And he understood that and he's had, you we've, we've set some patient care referrals of not great care and mostly from, from, I would never want somebody else to go through what we went through mentality, not ever to be facetious, but just in, you are a doctor or a professional in a care position and people are coming to you and you have to be on. that's what you're getting paid for. And I know everybody has bad days, but I don't really care when it comes to my husband's health, you know? And so yeah, there was one specific doctor we walked away from. There was a couple doctor issues, but the majority of the time we were surrounded by pretty good care.
Kate Belany: you say it's just a feeling when you get to a doctor that you know is on your side or was there something specific that you were looking for when you were meeting with them?
Rozalyn Trego: Both, definitely a feeling, I know feelings can be emotionally attached. And sometimes they're just a detached person, but they are really knowledgeable. And so I'm okay with that, but if it gets to the point where you're not able to see the person side of Jake also, and you're only treating him as this patient, that's where we had a problem. I'll never forget the liver, surgeon who he just recently had a liver transplant with was like, yeah, the liver is such a beautiful organ. I'm like, cool. I'm glad somebody thinks that and I'm glad you're the one operating on my husband. Because like,
Kate Belany: Yeah.
Rozalyn Trego: no, that's not my jam. But I'm glad there's people that exist that care enough for that kind of thing. So it's like, it is with what they say, it's how their staff reacts, how their nurses talk about them. I mean, you kind of have to always be on like a swivel of like, Yes, I know you're a good doctor, but that doesn't mean that's where your care ends. I need you to also be a whole person, human being behind the knowledge. So it's just been like finding a balance of what makes sense for us. And I would say we've generally speaking, there are some really great doctors out there that are amazing and there are some not so great as well.
Kate Belany: I will say like one of the green lights that we've noticed just recently is when they mentioned something like textbook says we shouldn't do this. but now that we've gotten to know you and we've watched you and we've seen your journey, like we're gonna try it. And I that's
Rozalyn Trego: Yes.
Kate Belany: always been a green light for us. like, okay, you're seeing him as a person and as somebody that can handle this and as a 39 year old now, not a 73 year old that's looking for the next three months to your point.
Rozalyn Trego: Yeah. Yeah. Yeah. Yeah. The reality is the body is incredible. I mean, it can do wild things. So you have to be as a doctor, a problem solver and creatively. And sometimes that is looking outside of the box, especially in the stage 4 colon cancer. ⁓ I would say, and maybe you felt like this too, but there were some doctors that were excited by the fact that he was younger because it allowed them to do some ⁓ more out things than what they would do with like a 60 year old. So that was
Kate Belany: Yeah.
Rozalyn Trego: also a green light, like they were excited for lack of a better term to be like we could try this and we could try this, you know. So that was always like good to hear too that there was was options which is not always what you get in this world.
Kate Belany: No, I totally agree. so just to share with everybody that's listening. Jake's stage four cancer, colon cancer, where did the tumors metastasize? Do you mind sharing that a little bit? Is it just in the liver or did it go to other places too? Okay.
Rozalyn Trego: Sure, just the liver, thank God for that. So colon to the liver, yeah.
Kate Belany: Okay, and then I know liver transplants are like the newest and greatest ⁓ solution ⁓ to ⁓ a metastasis from colon cancer. I think a lot of people are going be interested in hearing a little bit more about that. Like, why did you guys decide to go that route? Because it is drastic, of course, and it's a lifestyle change for sure. So what
Rozalyn Trego: Yeah. Yeah.
Kate Belany: led you to that decision? ⁓
Rozalyn Trego: ⁓ a lot of things. I had been asking about liver transplant, I would say probably about a year to two years after his diagnosis. ⁓ I had a couple of friends in the Colontown community or just in the colon cancer community that were like, Hey, you should look at this. You should consider this. That still seems so terrifying to us. ⁓ he was responsive to chemo. And so there were several stretches where he would have, he'd get to six months and be deemed. cancer-free and then it would pop right back up. So we had multiple moments of that where he'd get three months, six months, and then something else would pop up. We'd do an ablation and something else would pop up and then there were two. Then he got an HAI pump and then he got more resections, ablations, two different types. He SBRT radiation and then he had Y90 radiation right before transplant. So we felt like we really had tried. everything that was out there and what I don't know about you guys but what I've often heard is surgery, we're physically removing the tumors, the cancer is really still today the best case scenario.
Kate Belany: standard.
Rozalyn Trego: Yeah and so it was to the point where we were like There's a stat out there of like 70 % of colon cancer patients have a recurrence after a liver transplant. So that was one that was really pushing us to not, after speaking with other doctors, 70%. Yeah.
Kate Belany: it's 70 wow okay
Rozalyn Trego: That has significantly decreased in probably the past couple of years, but there's not case studies out yet that have been published. stating that it's more closer to 50%. I mean, based on the research and reading it, you can see that, but it's not yet done with a case study or case studies. So that was ultimately what led us to saying, we've done all these things to his liver anyways, that is not making it a great functioning liver. It keeps popping up in the liver. If the liver is the continual problem, then we needed to remove it. And the doctors pretty much agreed on all of that. We had several doctors that we really trusted all saying the same thing.
Kate Belany: Mm-hmm.
Rozalyn Trego: And so we really thought about it. It was like, okay, also your liver has been through a war zone for five years now. You're going to probably need a transplant at some point in time. It's probably better to do it now than it is to do it when you are 60. and it's harder to recover and whatnot. So, you know, we, as terrifying as it was, it was the first time in a while that I felt we had a little bit of hope. Not to say we didn't before, but like true hope is different than the fabricated hope that I keep telling myself. It was really like, I feel like this is really a space that we can get to. hopefully being curative, which I hadn't felt like in probably since his diagnosis, honestly. And I still don't know if I really feel that now, but I feel more hopeful with that. So that's what ultimately led us there. It's terrifying to think about leading up to it is a lot of work and probably the worst Jake has ever physically been before having surgery, but that is what is changing.
Kate Belany: Okay.
Rozalyn Trego: the 70 % to 50 % is that they are blasting you with multiple therapies prior to getting a transplant. So the good news that we did receive is that his liver, his previous liver was deemed cancer free when it was taken out, meaning all of those therapies we did up until the transplant actually did its job, which then gives
Kate Belany: No way.
Rozalyn Trego: you a better margin. Yeah, afterwards, hopefully not. having it pop back up, but there's still that potential. yeah, we really put him through the wringer to get to that point and are very
Kate Belany: Yeah.
Rozalyn Trego: thankful it was an option.
Kate Belany: I can imagine. Well, thanks for sharing that. And it's awesome to hear that you guys have gone through it. And it sounds like you're waiting on scans now post
Rozalyn Trego: Good.
Kate Belany: operation, but ultimately just in a much better place with a lot of hope. So thanks for sharing that.
Rozalyn Trego: Yeah.
Kate Belany: I want to be mindful of your time. So I have one more question for you if you're open to it. If you could go back to the beginning of this journey, what would you tell yourself as a caregiver?
Rozalyn Trego: I don't know. mean, what I tell myself daily and what I tell my children is you can be brave and you can do hard things. That's it. That is all that I have most days. Sometimes to just get out of bed. But yeah, I would say those two things and just lean into people that love you. I'd say a couple of things. I don't think I could say just one. lean into your community and this will absolutely flip your marriage upside down. And this is what you signed up for. You you said for better for worse and you're gonna have to figure it out. And that's where we're at. I would say nothing like overtly super positive, but just like, you know, you can do this and you've got people around you that can. and can see you through it. So I am the most undecisive person, so saying one thing is wild for me. I would probably write myself a paragraph. But
Kate Belany: That's okay, you could say a Fair.
Rozalyn Trego: yeah, yeah, I would say those couple of things for sure.
Kate Belany: Okay, awesome. Well, thanks so much, Roz. Really appreciate having you on here and just sharing your story. I just know it'll mean so much to people to hear your journey. So thank you.
Rozalyn Trego: Thank you. I appreciate you carving out the space in the world for this. You know, it's a club you never want to be a part of, but it's also like a really beautiful, encouraging club sometimes too. So thank you
Kate Belany: Agree.
Rozalyn Trego: for being just kind of a light in a really weird cave that you're often living in. No, we're in
Kate Belany: We don't want to be in it, but we're in it.
Rozalyn Trego: it. We're in it. But you can pick your head out every now and then. So thanks for being that today.
Kate Belany: Agreed.
