Life, Faith and Surviving Testicular Cancer - Part 1

Meet Matt Ode, now 31 at the recording of this podcast, married, and a man who survived Stage 3C testicular cancer.

Diagnosed at age 24, Matt was a personal trainer in excellent shape and enjoying life until he received his cancer diagnosis. His treatment began with chemotherapy, and then, surgery to remove an 11-centimeter tumor in his small intestine followed by multiple complications. 

Faith played, and continues to  play, a vital and primary role in Matt's story, details he shared in this podcast. Matt's mom had people praying all over the world for his recovery. He endured two comas - one that happened on its own, and later, an induced coma after cardiac arrest. His girlfriend, now wife Lauren, traveled this journey with him, and listeners will learn more about her support. And now, after years of hard work and internal discovery, Matt gives back to those with cancer in many ways.

His Facebook group - Cancer/ Patient Survivor Network: Take Back Your Life From Cancer- began in 2020 and has more than 6,000 followers. In 2023, he introduced a second Facebook group to help cancer survivors find the path they want to take using their own unique talents.

This is Part 1 of Matt Ode's story. Learn more about this vibrant, enthusiastic, and energetic young man, helping people transform their minds, body and spirit as a testicular cancer survivor.

VIsit the Max Mallory Foundation to listen to this and past episodes of Don't GIve Up on Testicular Cancer.

Transcript

Life, Faith and Surviving Testicular Cancer, with Matt Ode, season 3, episode 2 – this is part one of a two-part broadcast and telecast on YouTube.

ANNOUNCER: Welcome to Don't Give Up on Testicular Cancer, a podcast where testicular cancer survivors, caregivers, and others who have navigated the cancer journey share their stories. The podcast comes to you from the Max Mallory Foundation. A non-profit family foundation focused on educating about testicular cancer in honor and in memory of Max Mallory, who died in 2016 at the young age of 22 from testicular cancer. Had he survived, Max wanted to help young adults with cancer. This podcast helps meet that goal. Here now is your host, Joyce Lofstrom, Max's mom and a young adult cancer survivor.

JOYCE: Hi, this is Joyce, and with me today is Matt Ode. And Matt is here to tell a story about his testicular cancer journey and his ongoing determination. At age 24, he was a personal trainer in excellent shape and enjoying life. He learned then that he had stage three C testicular cancer. His treatment included chemotherapy surgery to remove an 11-centimeter tumor in his small intestine, and multiple complications, which Matt will share with us. Now, after years of hard work and internal discovery, Matt gives back to those with cancer in many ways. In 2020, he introduced his Facebook group, Cancer Patient Survivor Network, Take Back Your Life from Cancer, which now has more than 6,000 followers. He also has a new Facebook group that he will tell us about. He is a vibrant, enthusiastic, and energetic young man helping people transform their minds, body, and spirit as a transformation coach. He also will share his story as a speaker to organizations and groups interested to know more about him and testicular cancer. Matt and I connected on Facebook, and I'm really honored to have him here to share his story with us, and just so glad of your survival. So tell us, Matt, welcome first to you. Glad you could join us.

MATT: Yeah, thank you for having me, Joyce. Excited to be here. And I'm excited to share my story. But more importantly, I think I'm excited to share the lessons I've learned along the way to hopefully help your community out with whatever challenges they may be facing in life. So I'm just excited to be a part of this today. So thank you.

JOYCE: I think you started with a really good point there about just the lessons that you learned along the way, as well as your story. So why don't you start, and however you would like to start out with your story, anything you would like to tell us.

MATT: Yeah, absolutely. So, you really gave a great introduction. I always do start off with a special moment in my life. I'm 31 years old now and backtrack to March 17th of 2016. So I was 24 years old at the time. And that was the day that I met my now wife, Lauren, [and she’s] going to be a very important part of this story in my journey. So, we're just at a bar, St. Patrick's Day, and it's a very important day, which I'll get to, but, we met that day. And, it was a very exciting time of our lives. After a few weeks, we kept talking. Eventually, after about a month or two, we started dating. And as the summer came, we were doing everything that a couple would do, going on hikes, doing some adventurous things, having a great time, enjoying life with our friends and everything like that.

And then all of a sudden, me being this healthy, individualist, personal trainer, working out all the time, eating the right foods, I started to get these minor back pains. And, you're 24 years old at the time, of course, I'm just going to shrug it off, everything was fine. And as weeks kept coming by, I was unable to do a lot of the activities that me and Lauren would usually do, or me and my friends, and Lauren kept getting a little concerned. She's like, I think you need to go to a doctor. I think you need to get checked up. And me being this young adult thinking I'm invincible, I just kept shrugging it off and shrugging it off. And unfortunately, that symptom kept getting worse and worse and worse. And eventually one day, about a few months later, it got so bad that I actually ended up one night--I was hanging out with Lauren--and I ended up puking up blood. I ended up getting rushed to the emergency room just about a day later.

I'm thinking it's food poisoning or something like that. And the doctor, he does this blood test on me. And he finds out that I had lost two thirds of the blood circulating in my body. So what happened was, it was yeah, it had been going on for, close to 24 hours. And I wish I could say how stubborn I was; I was just so stubborn. They gave me no option. Lauren [and] my parents [said], you are going to the hospital. I'm like, obviously, so they take me there, [and] the [doctors] are like, we need to figure out what was causing all of this bleeding. So they did a blood test, or they did surgery on me that night to figure out what was going on. They thought it was an ulcer that was causing the bleeding. Well, unfortunately, next morning, after they'd already given me six bags of blood to rebuild my energy levels, I was super low on energy. I thought I was going to pass out, super sick.

I get back, waking up from what I thought was the surgery, and the doctor walks in and it's just me and my parents at the time and nobody else knows what's going on and he walks over and he has this blank stare in his eyes. And I just knew right then and there it was something [that was] going to be really challenging in my life. And what he did was,  he sat down with me, he looked me in the eyes he grabbed my hand and he said Matt,  we have found an 11-centimeter tumor in your small intestine, which is causing the bleeding. And we know that it is some type of cancer. We just don't know which yet. And what we have to do is rush you from our local hospital here; we have to get you to our main campus of the Cleveland Clinic [Ohio], as soon as possible.

And I just remember looking at my parents and they were in complete disbelief. They're crying. And for me, trying to be this strong young adult, instead of letting my emotions go, I said, how am I going to be strong for them? How am I going to be strong for when I have to tell Lauren the news? How am I going to be strong when I have to give this news to friends and family? And I'll tell you right now, that was probably one of the worst things I could have done, was just holding in all of my emotions. But I did that for a few days. And I guess my very first lesson that I would tell anybody is number one, if you're a young adult, and there's something that's abnormal in your body, obviously, you're not going to go as extreme, hopefully, as I ever do. But I would say if it lasts more than two weeks, you need to get yourself checked out. And number two is, if you are struggling mentally or emotionally, or if there's something difficult in your life, do not be afraid to share with what you're going through because I'll tell you right now, that holding in your emotions is like holding on to this massive baggage that is only going to get worse over time.

So eventually, after a few days, I finally got to meet up with Lauren. And I just remember us locking eyes and me having all these emotions because I'm like, we'd only been dating for three months at the time. And I was just saying, I hope she doesn't leave me. But if she does, I understand. And she was the complete opposite. And I remember when I knew she was going to stay with me that I broke down and I was finally able to release everything that I was going through. And after those few days, they found out that that's when I had the highest stage of testicular cancer, which is technically stage four, but in their books, it's stage three C. And then after all of that, I could finally say, what are my next steps and where do I need to go next?

JOYCE: I don't even know what to say at this point because I understand that shock. That's how Max found out; [he] was in the emergency room at a hospital. So what were your next steps? Once you knew what it was, what did you do next?

MATT: Yeah, absolutely. So then after I was finally able to release a lot of my emotions, figure out where to go next, this is when they immediately put me into five rounds of intense chemotherapy. And the chemotherapy that I was on was what's called BEP. Now, I'll backtrack just really quickly, because a lot of people are listening who know anything about testicular cancer are going to ask, well, Matt, you said your symptom was back pain. Why did you not have any symptoms in your testicle? And that is the great question because that is one thing I did not have, that I would say over 90% of men, if you are having some type of testicular cancer, that is where it's mostly going to form.

For some reason, mine had just a weird way of forming. It originated in the testicle, but it started forming in the small intestine. I wish I could tell you more of why, but that was kind of the weird reasoning. So that's why I say, if you just have any just crazy or weird symptom, go get yourself checked out. You're most likely not going to have cancer, of course, but just please get yourself checked out.

So they put me on five rounds of what's called BEP, bleomycin, etoposide, and cisplatin. And to say the least, it wiped me out within a week. I was already starting to lose my hair. I was completely worn out. There were days I just couldn't even get out of bed. And, one thing I did was, my number one thing is, I had to stay strong in my faith. If you know me, I don't push of course, I don't want to push faith on anybody who's listening,  but me being a Christian, asking God for strength, asking Him for courage to just keep pushing forward. And with that, on top of my incredible support system, and on top of my amazing medical staff at the Cleveland Clinic, every day was a battle. But every day, I said, what is one thing I can do to win the day? And it may not have even been getting out of bed, it may have just been having a strong mental attitude, or I may have just said, hey, I need to get myself to chemotherapy today.

That's what I want to tell somebody who may be struggling right now is, you don't have to get to the final destination today. If you can just focus on winning today with just one little thing at a time, it will compound into weekly wins, monthly wins, and next thing you will eventually get to that destination. So stay strong, use your support system, use whatever faith you have, and just know that, you're in really, really good hands.

So, a couple of really challenging things that happened during that time was number one, right in the middle of my chemotherapy, about my second or third round, my three-year-old puppy, who was also diagnosed with cancer only a few months before me, had passed away. And it was like we were fighting this together. And anybody who knows who's lost a dog is really challenging. And for me, at such a young age and losing him, that put me into a really dark and struggling place in my life. I almost kind of wanted to give up because I just felt like everything was against me. It was like setback after setback. And eventually, after a few days, I realized that I had two options. I could either become the victim of this situation and let it control me, or I could become victorious and start to use all of these challenging experiences as a way to grow, as a way to try to push myself forward.

And I said, I'm going to finish these next two to three rounds for my dog Duke, and I'm just going to keep pushing forward. And eventually, I was able to persevere. There were many up and down days, but I was able to get through that. And unfortunately, which we'll get into here next, that was the easy part for me. And many, many more complications along the way, but if you have any questions, as of right now, I'm happy to answer them.

JOYCE: Well, the one thing I'll say about what you said is just that day-by-day, it's so important in life in general, but especially when you're in a cancer journey like you were,  you really want to jump ahead and say, oh, I've got five more weeks of this, but it's really just today. Focus on today. What can I do today and get through it and feel better, and then go to the next day. It's hard to do, but you're right. That's really good advice.

MATT: Yeah. And I have a little thing too. I've always learned that if you only worry about the past, it's going to cause a lot of depression. And if you only worry about the future, it's going to cause a lot of anxiety. So I try to say it's okay to learn from the past and it's okay to plan for the future, but majority of your time, you need to learn to be the present. And like you said, by winning the day or just winning one task at a time.

JOYCE: Right. So okay, you're through the chemo, now what?

MATT: So the next step was, meeting back with my oncologist and, he knew I was going to have to have some type of surgery because of the tumor that was in my body. But our whole goal with chemotherapy was to shrink the tumor so that surgery would become less complicated. And I got some oncologist, and he goes, Matt, we have great news, and we have some really challenging news as well. And I said, okay, just give me the good news first and then we'll deal with the [other] news. So he said, good news. Your tumor is shrunk from eleven centimeters to three centimeters. The chemo was working. Your AFP, which is also a tumor marker--so this is another way to track your cancer--my tumor marker, my AFP, a normal AFP for a male should be under six. When I was first diagnosed, I was over 100,000. I was off of the charts. That's why they diagnosed me. It's basically the highest stage of testicular cancer.

But he [the oncologist] goes, your AFP levels are almost near perfect numbers. Your tumor marker is super low. But the problem is, we have to get rid of this tumor. And it's now wrapped around what's called your inferior vena cava. Now, your inferior vena cava is basically a central vein that goes from the bottom of your upper body to your heart. He said, we're going to have to have what's called an RPLND surgery, which most testicular patients have if they've been in high stage two to stage three. And he said, it's going to be a little more complicated than most, because we have to remove this vena cava on top of the tumor and any cancer that still may be in your body.

It was really challenging and finally the day came. They did a 12-hour surgery on me. They did remove the vena cava. They did remove the tumor. They got all the cancer and the lymph nodes that were out of my body that were potentially cancerous. And finally, I wake up like two or three days later, and I just remember waking up trying to get out of bed. And I'm like, holy cow, like, I can barely move. I mean, I knew I had a massive surgery, but I remember looking down. And going into that surgery, I lost about 40 pounds. So give or take, I was around 140 to 145 pounds coming out of that surgery, I [had been] close to 200 pounds.

So my whole body started swelling up. I had a massive scar from my left hip to my right hip. And I remember the doctor, the surgeon coming in, and he said, hey, I know we have a ton of swelling, but we have a draining tube, and hopefully the swelling should eventually all release within the next week or so. So about three, four more days go by, I'm released from the hospital, another three to four more days go by, and the draining was doing pretty well, and then all of a sudden, just stopped, just like that. And I remember one day, I'm like, this is weird. And within no joke, within like an hour, I was in so much pain that they had me on Oxycontin. They had me on Percocet. I mean, you name it. It wasn't even doing anything for me. I get rushed back to the emergency room. Immediately they put me in the ambulance. I get rushed back to the clinic and they ended up having to drain seven liters of fluid out of my stomach. causing me to have complete kidney and liver failure. My body went to what's called compartment syndrome. So it started to shut down and they ended up having to drill a cone inside of my head to monitor any type of brain swelling. And I ended up falling into a two-week  non-induced coma during all of that.

JOYCE: Non-induced? Oh boy.

MATT: Any questions you can ask?

JOYCE: No, I just can't imagine that. I mean, that amount of fluid in your body and the RPLND surgery is bad enough. It's really painful. It's that abdominal cut and so forth. So wow.

MATT: Yeah. So, here's a really crazy--a lot of people, have really cool stories of faith and stuff like that--and I'd love to share mine if it's okay with you.

JOYCE: That's part of your journey.

MATT: So yeah, awesome. So what had happened was you had my mom, my dad, and Lauren, who, first of all, they were with me through chemo 24-7, always there, just complete angels for me. And then, of course, they never left my side during this challenging moment as well. And my mom, being so faith-based, she got all my friends, all my family together and would go to my local church and they would have a prayer service for me. They held three prayer services and apparently, from my understanding, hundreds of people went to the church. They said thousands. They were talking to people around the world. They had people everywhere. Thousands praying for me and then every single day Lauren would come up and she would just hold my hand, she'd pray, and she just asked God for me to have strength and for me to wake up. And no joke, in the middle of the last prayer service, while everyone was praying, Lauren comes up, she's holding my hand, and she's praying as well, and that was the moment that I woke up.

JOYCE: Wow. Yeah.

MATT: I don't remember, but what she told me is she ran over to the nurse. She said, I think Matt's waking up. I can feel his hands starting to wiggle. I can kind of see his eyelids opening. They didn't believe--not they didn't believe her, but they were like, we need to get the surgeon in here immediately to see what's going on. He comes in and they officially announced that I'm starting to wake up. And for me, that just goes to show the power of prayer. And it goes to show that even in your darkest moments, sometimes this may not be the end of your journey. This may be a brand-new chapter, a brand-new story that God has for you--for something so much greater in your life. And for me, that was kind of the starting point of where God said, Matt, I know you've been going through some really, really tough times, but now it's time to start going into the right direction.

Just when I thought things were getting better, I did have a couple more complications along the way as well. So it wasn't just that I woke up, everything was great. Unfortunately, two weeks later, not even two weeks, a week later, I had a catheter in my chest, and I had one in my neck. That was because they thought I was going to be on dialysis for the rest of my life with my, I believe it's my kidneys that were failing. So eventually, miracles were happening, my kidney started working properly, my liver was coming back--you know it wasn't perfect, but it was starting to heal and it was like kind of miraculous. So what they did was they wanted to take out one of the catheters in my neck.

And as they did so, I ended up having an arrhythmic heartbeat. I went into cardiac arrest, and they had to do anywhere from five to eight minutes of CPR on me, so I know a lot of people listening may have seen the NFL game the other day, where Hamlin ended up going into cardiac arrest. I didn't have that exact situation, but what they ended up doing for him is almost identical to what they ended up having to do for me.   What they ended up doing after they brought me back to life was they had to sedate me. And what they had to do is, they had to put a breathing tube in my mouth because I still couldn't necessarily breathe on my own. And for the next week, they had to make sure that my vitals slowly came back into play. They had to make sure that my body and my heart could slowly come back into rhythm and make sure that I was able to function on my own again--kind of exactly the same route that he [Hamlin] went, a little different fashion, but that aspect was very similar.

And, I just remember waking up and it's now--I had my surgery early January, I had all my complications mid-January, and almost the last thing I can remember was waking up after that and it was now February; it was actually Valentine's Day. I woke up on Valentine's Day, and I've now [had] four surgeries; the doctors had done a ton of work on my stomach because they took multiple surgeries to relieve the swelling in my body to monitor a lot of the stuff going on and why it's causing all these complications.

No joke, for me laying in my bed to taking my very first steps again, took nearly two weeks with constant nurses and doctors helping me. And it was one of the most painful, excruciating things in my life. I almost felt paralyzed for like three to five days. And I was so weak. My bones were so frail. And eventually I was able to muster up the strength. I was able to kind of progress forward. And finally, after nearly over a month, I was  released from the ICU. I was into a little bit less of an intense care unit. And within three to four days, I was still making a little progress. So they wanted to move me to one last physical kind of therapy place. And it was still a very intense recovery room, but not nearly as bad as the other two. And what happened was my stitches in my stomach ended up bursting open, and it was crazy out of nowhere, and I had I don't want to get too gruesome here, but I so I basically had to get rushed into a fifth major surgery and what they ended up having to do was called an open wound surgery on me.

They had to completely open up all of my abdominals and put a massive football sized mesh on my stomach. And of course, I'm sure you can guess where I ended up, right back into the ICU room. And I remember, this was really the turning point in my life. I remember waking up and I actually remember I didn't know exactly where I was, but I knew I remembered the surgery before. I can remember a lot of these things. And I just remember praying to God--if I wasn't at rock bottom before, I'm officially at rock bottom right now. And I'm like, where do I go next? And He just basically told me, take that first step. And I remember when I took that first step, I walk further, I'm not even kidding you, it had to have just been grace of God I walk further than I ever done previous to the ICU room every previous that I did to you know the other recovery rooms and I was just on this mission. I was only in the ICU for another three to four days after that.

JOYCE: Wow.

MATT: [There was this huge machine on my stomach. But after about 50, it was around 53 to 55 days in the hospital, the ICU, I was finally released from the hospital on March 17 of 2017, exactly one year from when I had met Lauren. And that's why I always start my journey of how I met her and when I met her. And I'm telling you, between my parents and her, when I said I'd never left that hospital, unless Lauren had to go to work, she would literally wake up 4.30 in the morning, five in the morning, she'd come into the room, and you're technically not even allowed in the ICU, you're not even allowed to really visit anyone until like eight or nine, but you would sneak in, don't even ask how, but you'd sneak in, she'd just spend time, I couldn't even talk for 80% of it, go to work, come back, and just sit there. And the coolest thing is, and she loves coloring. I'm not even kidding you, my wall, if I could show you a picture, we had this, I had a huge glass  window. The whole window was, she would, every time she colored, she put like a cool painting on there. And the whole window was almost filled with those paintings. And it just goes to show she just she never left my side. And it was almost like God kind of put somebody in my life to really be that angel. So yeah, that's my story. I know I talked a ton here.

JOYCE: But yeah, so you were basically it's like, how many months were you—what? Five months, three months from the first surgery till the end of it?

MATT: First surgery was January 6th, so to March 17th--a little over two months. So I was in that hospital for really over 53 to 55-ish days.

JOYCE: All right, so now you've gotten through multiple surgeries, I can't imagine. Like you said, you're a young man and then all these really extreme situations. So you're home now, what's next?

MATT: Yeah. So I wish I could say it was rainbows and butterflies, but it was the total opposite. A lot of people don't realize, unless you've gone through some really, challenging experience, which I know some people watching have some tough surgeries, that when you get home, you're kind of on your own. Now, you don't necessarily have the nurses every day checking in, but you don't have the doctors coming in and pushing you say, Matt, okay, it's time for physical therapy, it's time to do this. I had dropped down from that 200-pound person to 110 pounds in just a matter of less than two months. So I basically was still learning to walk, still learning to rebuild all my strength.

And I had a lot of limiting beliefs. I mean, not even a year ago, eight months ago, I was this healthy personal trainer, in some of the best shape of my life, to now 110 pounds, trying to learn to rebuild my life, looking like a skeleton, and I had a lot of body image issues. I had a lot of limiting beliefs in my life, and I was easily having this ‘why me’  mentality and like I was telling you, before becoming the victim of the situation, but I have a little saying that goes everything in life happens for you not to you, and what I mean by that is you can either say why is this circumstance happening to me, meaning making excuses, having a why me mentality and letting it control your life or saying, how is life happening for me? What is the lesson that I have?

And this is what I had to eventually work through. That is what allowed me to start winning the day to progress forward. And what I did was literally, here's what I did. This is how I learned how to walk really quickly: I had a lawn chair in one part of my driveway. and a lawn chair in the other about maybe 10 to 20 meters away. I would put all my might up, walk over to that lawn chair, sit down for a minute, contemplate life a little bit, get my butt back up, walk back to that lawn chair. And you know what I did every day? I just pushed it a little further back and a little bit further back. And guess what? One day I started walking onto the sidewalk. And then I started walking further and further. And then one day I said, Dad--because he helped me a lot too--don't even bring the lawn chair. I'm going to walk all the way and I'm going to walk all the way back. And that right there was the moment I was like, I can do this. I know for a fact I can start to recover. And I know for a fact I'm going to get to where I need to be again in my life. And those were the moments. It starts in your mindset and then you take action towards it.

[NOTE: This is part one of a two-part series. The story continues in the next episode and transcript.]

ANNOUNCER: Thank you for watching this episode of Don't Give Up on Testicular Cancer. If you enjoyed this podcast, please subscribe to our program on your favorite podcast directory. You can also visit the Max Mallory Foundation at http://www.maxmalloryfoundation.com/podcastto listen to previous podcast episodes or donate to the foundation. Join us again next time for another episode of Don't Give Up on Testicular Cancer.

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