Don’t Give Up on Testicular Cancer

Biking Across the World and Giving Back as a Testicular Cancer Survivor - Season 2, Episode 7

March 31, 2022 The Max Mallory Foundation - Joyce Lofstrom host Season 2 Episode 7
Don’t Give Up on Testicular Cancer
Biking Across the World and Giving Back as a Testicular Cancer Survivor - Season 2, Episode 7
Show Notes Transcript

Connor O'Leary was 19 and a professional cyclist when diagnosed with testicular cancer. After treatment, he and his dad David, a cancer survivor, qualified for Amazing Race 22. This competitive biking event took this duo across the world in 2014, and they won the competition. Connor joined the Testicular Cancer Foundation as Chief Mission Officer in 2015, where he helps other survivors and their families have the resources and community so crucial during this health journey. Hear more from Connor on this episode of Don't Give Up on Testicular Cancer from the Max Mallory Foundation

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Biking Across the World and Giving Back as a Testicular Cancer Survivor Testicular Cancer - Season 2, Episode 7


Joyce Lofstrom

Hi this is Joyce, and with me today is Connor O'Leary. At age 22, Connor became the youngest person to win The Amazing Race, which is a cycling journey of over 23,000 miles in 22 cities in 9 countries. He did this race with his dad, David O'Leary; this happened 3 years after his testicular cancer diagnosis at age nineteen and he's with me today to talk more about his story and his work with the Testicular Cancer Foundation. So Connor, welcome, I'm really glad you could be with me.


00:34.55

Connor O'Leary

Thank you, Joyce, it's an honor to be here and I'm excited to chat with you today.


00:38.36

Joyce Lofstrom

Great. So tell us your story. I always like to start out that way and just share what happened with you and testicular cancer.


00:48.15

Connor O'Leary

Yeah, that sounds great. So growing up, I was a big cyclist--I loved riding my bike and spent a lot of my younger years racing all over the world. And I was 19, I was racing in Europe at the time, and I started to get some pain in my lower back. I was getting fatigued. I had some discomfort down there, and, long story short, ended up flying back to the states and going to the doctor and that's when you know the 3 words you never think you'll hear at 19 were uttered: "You have cancer." It totally threw me for a loop and obviously my parents too, you know.


01:32.45

Joyce Lofstrom

Right.


01:41.45

Connor O'Leary

You don't realize that you're you're so susceptible to this disease, and you know, my parents were just as flabbergasted as I was.


01:51.19

Joyce Lofstrom

You know, I think people at any age, but especially when you're young, a teenager, an older teenager, you don't know about testicular cancer. Most of the people I've talked with say the same thing that just you never expect, that to come out it. Age nineteen. So you're right.


02:10.47

Connor O'Leary

It's just something that's really not talked about a whole lot, to be honest, you know, maybe there was a brief comment and in health class or sex ed or or something like that growing up. But. nothing stuck with me, or nothing kind of registered with me that I should be keeping this on my radar--so it it definitely was a big surprise.


And it just makes me think, what if I had been doing testicular self-exams, what if I caught this early. You know, would I have needed the additional chemotherapy, surgery, and and had some of the the side effects that were associated with advanced stage disease


But that's just part of my story--I guess, right, I didn't catch it early. You know, thankfully I didn't  catch it later--it was stage 2B, and I did 4 rounds of of BEP, and obviously had the orchiectomy, but man, knock on wood, I'm healthy now and everything's great and really, I just love talking to other people in the testicular cancer community and working on moving the needle in terms of education and awareness.


03:37.37

Joyce Lofstrom

That's great, and I know we're going to get to your organization and everything they do. But I really want to go back to your cycling career, because you're very humble. But I know you have accomplished so much as a cyclist and just talk a little bit more about some of the things that you've done and then how testicular cancer affected that achievement.


03:58.34

Connor O'Leary

Absolutely yeah, like I said, I grew up racing bikes and and had the opportunity to to race professionally which was incredible, to travel the country and in the entire world, racing bikes-- which was amazing. You know, a cancer diagnosis doesn't really meld very well with being a professional athlete and an endurance athlete, and so when I was diagnosed, I obviously took took a substantial amount of time off for for treatment and then recovery. And I have to say it was really tough getting back to the top of the sport. I developed blood clots in my lungs during during treatment, which was extremely scary, and and sent me into intensive care for over two weeks.


04:50.50

Joyce Lofstrom

Oh Connor, I didn't know that. Wow. Oh.


04:57.50

Connor O'Leary

Yeah, and then, you know, I had a blood clot that was kind of on the end of my port as well, and they were super concerned that would break loose and potentially travel to my brain, so it was a really scary few weeks of, kind of, touch-and-go, one minute getting rushed to get brain scans to it was just a whirlwind.


05:22.22

Joyce Lofstrom

I was going to ask what you, what was your biggest challenge through all of your cancer treatment?


05:36.42

Connor O'Leary

You know, I think looking back, obviously I think it's expected that you don't feel well. And I definitely didn't, I mean, I've never felt more terrible in my entire life. Especially when you kind of add the the compounding of chemotherapy and then you throw blood clots into the mix. But I think what for me was was really difficult was, it's so taxing mentally, you know, it's just a grind.


You know, it's asking the question, is this ever going to end? You know--when am I going to feel semi-normal? And it's really tough to be patient and kind of trust the process and and so for me, it was a real test of my patience--and kind of my mental fortitude, because I've never been used to being knocked down like that, you know, and just having no energy. I've always been extremely active and so it was definitely an adjustment for me to to go from that lifestyle to, you know, getting out of breath walking up the stairs.


06:58.37

Joyce Lofstrom

Right? I think you make a good point about being patient--you know, with any disease, but especially cancer, and everything that you went through and others go through with chemo and surgeries. It's very hard to be patient, I mean. You just want it to be over with, and it will be but it's not always on the schedule you had in mind. So, well, tell us--I know in my intro I said you know have three years, you got back to this cycling and you and your dad did this great race and so forth.


07:21.49

Connor O'Leary

Right.


07:35.41

Joyce Lofstrom

Tell us more about that, I mean--maybe it was that part of your motivation to get up and get going, knowing you could do that.


07:36.10

Connor O'Leary

Yeah, you know it it absolutely was, Joyce. You know, I remember sitting in my hospital bed and just thinking, you never know what tomorrow holds. You know, it's kind of that cliche. But it's taking advantage of every opportunity and I remember sitting there thinking, when I feel better,  when I am better, I want to do something. I want to see something, I want to really live life to the fullest--and that was definitely what prompted me to apply for The Amazing Race and, you know, knock on wood.


We got really lucky and and got to participate in that. But yeah, I attribute you know my cancer experience to kind of kickstarting us, and and making that a reality. You know, my dad is a cancer survivor as well. He had prostate cancer a few years prior to me, and I think the story of you know, two cancer survivors really helped 'sell' ourselves to participate on The Amazing Race and it was an absolutely incredible experience--you know, traveling the world with my dad,  participating in all different types of challenges, and it was just incredible. I mean, like you said in the intro, we saw some incredible countries. We had a blast.


09:05.66

Joyce Lofstrom

How long do it take to to do all that?


09:11.19

Connor O'Leary

The the total filming of it was about 21 days, so it's quick--I mean you're literally in a country for a day, and then you're on to the next country. So by the end, you are just absolutely exhausted. It was so much harder than I anticipated.


09:13.41

Joyce Lofstrom

Oh.


09:30.94

Connor O'Leary

You know, I never had any interest in being on a TV show, or, you know, being filmed, but the opportunity for a free trip around the world, and the chance to win $1,000,000 was was pretty cool.


09:47.76

Joyce Lofstrom

Yeah, I would say so.


09:50.57

Connor O'Leary

And so we had a blast, and like I said it was extremely tough, both physically and mentally. I mean, it's it was quite the experience.


10:03.10

Joyce Lofstrom

So why don't segue to what you're doing with the Testicular Cancer Foundation--where you are now, part of the team there as the Chief Mission Officer. And I know that group helped you when you were going through cancer. Talk a little bit about the Foundation--what you do and how it helped you.


10:21.59

Connor O'Leary

Yeah, absolutely. You know, I've been with the Testicular Cancer Foundation now for almost seven years, which is scary--time flies!


10:34.10

Joyce Lofstrom

Yeah, right? I know.


10:40.77

Connor O'Leary

It's an incredible organization. I connected with the founder, Matt Ferstler, back in 2014, and it was actually after my cancer journey. But you know, we immediately hit it off. We connected and  he said, hey, come join us at the Testicular Cancer Foundation, and to be completely honest with you, I had no interest in the nonprofit world, or working with a nonprofit. But I met with them anyways and kind of took a look at what the organization did, and does, and the impact it made and I was sold.


It's really neat to see the good that that the Testicular Cancer Foundation does, you know, not only for the cancer community and the testicular cancer community, but just in general,  spreading education and awareness. Our primary mission is education, awareness and support,  and so those are kind of the 3 pillars that we focus on, and we feel like we're working hard to move the needle with the addition of other cancer groups around the country.


11:58.60

Joyce Lofstrom

So, I know you have a summit a meeting coming up in the fall. Tell our listeners about that. Are you back in person, or is it virtual, or what will it be like?


12:06.73

Connor O'Leary

Yes, it will be in person. So it's it's called the TCF Summit, and it is basically a weekend comprised of of education, awareness, support, community. We had the event last year as well. Last year it was in April. This year we moved it to October, just kind of based on what we forecasted on Covid--doing you know with that uptick earlier in the year. We thought we'd push it later in the year.


12:33.17

Joyce Lofstrom

Right.


12:40.75

Connor O'Leary

It's for guys in the in the Testicular Cancer Community and caregivers. There's been a need, at least in our perspective, for some one on one interaction. I think Zoom is great; I think this virtual world is incredible, and it's amazing. But even though we're able to do that with some of these tools, there's very little that can mimic real 1 on 1 personal connections, and I think that's been missing. So we're excited; I think we'll have a great turnout. It's open to anybody and everybody:  you know, advocates, caregivers, survivors, patients. Last year, I think we forty survivors and a few patients, and this year, you know, we would really love to see double that and I think that's possible. It's a great weekend for people to just interact to to meet somebody else. I mean, I wish I had that when I was diagnosed. I wish I had some 1 on 1 interaction with somebody. They could say, hey, I've been through this; I understand it, I get it and I'm here for you.


13:56.30

Joyce Lofstrom

Right? right.


13:58.50

Connor O'Leary

And so I think those connections are extremely valuable.


14:01.71

Joyce Lofstrom

I agree with you a hundred percent. I know Max [Mallory] had an Imerman Angel when he was sick and that kind of connection really helped him. Tell us where your meeting will be and the dates.


14:13.20

Connor O'Leary

Yes, absolutely, so it would be in Las Vegas, Nevada at the Four Seasons resort there. It's a little bit off the Strip. It's quiet. It's clean. The dates are October 28th through the 30th. So it's a Friday to a Sunday, and like I said, more than anything, it's a great time to meet other people who can understand what you've been through--just a really, really incredible support system and network of guys and caregivers.


14:50.30

Joyce Lofstrom

Sounds good. I think it would be a really valuable event for any survivor, or as you said, some of the patients. So I know, to, from all the things you've been doing in your life, and you got involved with the Testicular Cancer Foundation. But you also are an entrepreneur and I know you have a backpack that you invented and some other things. Talk about that. I looked at that backpack. It was pretty cool.


15:12.96

Connor O'Leary

Well, Joyce, give me give me your address after this column and I'll get you one. I would love to do that and I think I can attribute a lot of what I'm doing now and have done, really taking it back to to my cancer experience. I mean, that was another one of my bucket list items, to create something I love--building and and creating. I had this idea of a backpack I wanted and after cancer, I thought, man life is short. Maybe I went too fast out of the gates, but I just started doing everything and anything, and that backpack was one of those things, and really cool to see it be successful and we're still selling them.


16:04.95

Connor O'Leary

It's a fun way to be creative and again, it's something that I I was like, man, I'd love to have a bag that does this and I can't find one so I'm gonna I'm gonna fly over to Vietnam and find a factory to make it for me. Which was a really neat experience in itself. But yeah I love a kind of that entrepreneurial spirit and creating and building and it's just something I'm really passionate about.


16:33.92

Joyce Lofstrom

So how do you find your backpack? Is it at the O'Leary Theory website, because I know that too.


16:40.61

Connor O'Leary

It's not there, it's actually a website called WanakeOutdoors.com. Wanaka is what it was inspired from.


16:51.65

Joyce Lofstrom

Oh, okay.


16:56.73

Connor O'Leary

A trip I took to New Zealand, I went to this town in New Zealand [Wanaka] and was just mesmerized by the beauty, and it kind of stood for everything I loved. So that's how the name came about.


17:08.35

Joyce Lofstrom

Very cool. So do you want to talk about the O'Leary Theory website?


17:14.57

Connor O'Leary

Yeah, I think it you know it's, again, kind of another side project but just somewhere where more than anything has become a platform for speaking opportunities and really sharing my story. Which I love to do. I mean, I love opportunities like this to share a little bit about my story but also some of the experiences I've had, and the work I'm currently doing, and so I think the O'Leary Theory was just another outlet for me to kind of get my message across. And so that's really what that brand and website stands for.


17:58.70

Joyce Lofstrom

I think you are a very good example of what cancer could do--when you kind of reach inside and like you said, I wanted this certain kind of backpack, I couldn't find one, so, you know, I'm gonna make one, and you knew how to do that, and had the had the ability to go find a manufacturer,  and I think there's so much of that in so many of us that you think you can't do something or you shouldn't--but you know, if we follow your example, you can if you just put your mind to it. It's a lot of work but it doesn't mean it won't work or succeed. So I think it's interesting, but it's motivating for, hopefully, a lot of people listening.


18:45.68

Connor O'Leary

Well, I appreciate that and I think you're right. I think it's just a matter of taking action. I mean, I think we all have the ability to to do these things and accomplish what we want to--it's just simply taking the steps to do that and for me, I feel like cancer helped me realize tha,t and not to harp on that, but I genuinely feel like that experience kind of gave me the the kick in the butt I needed and really provided the mindset of "man, if I can overcome this..."


19:24.33

Joyce Lofstrom

Like, right.


19:24.64

Connor O'Leary

I can do anything; I just need to stick with it and put my mind to it, and so again, I attribute my my experience--I wouldn't trade it for the world, though I definitely wouldn't want to go through cancer again and I don't think there's anybody that would--but I very rarely meet somebody that say that says, you know, I didn't learn, I didn't grow from that experience. You're forced to, and the connections I've made, the other survivors I've been able to meet, I feel extremely blessed. There's such a great community out there--I mean the Max Mallory Foundatio, Craycraft's TCS [Testicular Cancer Society], you know, we all have so so many incredible people that just want to make a difference in in the TC space.


20:11.54

Joyce Lofstrom

Right? right.


20:22.57

Connor O'Leary

It's really neat to see that being done. I think men's health is so far behind women's health and so it's just a breath of fresh air to see these people that are passionate, that want to make a difference and really are making a difference. Amazing to see what you guys are doing and these other groups out there. But I'm just grateful that I can be kind of a small part of that that  journey.


20:49.39

Joyce Lofstrom

Well, thank you, and I think that you hit upon something that we're all trying to do, which is raise awareness and make a difference. So what message do you have for a young man or any man that might be listening that thinks he has testicular cancer or is going through treatment? Anything you want to say to them?


21:09.88

Connor O'Leary

Yeah, I would love to take a moment and do that. I think if you know that young man that's listening to this that hasn't had to deal with cancer, I would say you know you never know what's going to happen. It's extremely important to stay diligent and really be an advocate for your own health and perform that testicular self exam if you think there's something off or you feel something different. Go to the doctor. The thing [that might] happen is they're going to say you know man, it wasn't testicular cancer, nothing to worry about. It's vital to catch it early, and so I can tell you, I thought the same thing: I thought, well that's never going to happen to me.


You know, I don't need to do any of that, and sure enough! You know it did, and it happens to a lot of us, so if you're out there listening to this, just be an advocate for your own health. You know, take the the measures and do a simple self exam. Get a yearly physical, just do the simple things that that are really important for your health. And if you're out there and you've been diagnosed or you're going through treatment, know that there are so many guys out there that want to be that support system for you--they want to help you through that journey. They're here for you and and and they're willing to answer a text, a call, an email. I mean obviously within our organization, we've got an incredible network of guys that would love to be that support system. But there's so many guys out there like you said, Imerman Angel, there's a host of groups out there, and Facebook groups.


22:59.94

Joyce Lofstrom

Right.


23:01.22

Connor O'Leary

You know, Reddit sub forums--but don't do this alone. You need a support system. You need caregivers out there that love you, that will give you the care you need, and the other thing I would mention is that if you are going through it, or you know you're you're done with your treatment, join our our weekly Zoom call [at Testicular Cancer Foundation]. We do a Zoom call every Thursday for survivors and patients that's really neat. It's very laid back, but it's just a great space for guys to talk about what's going on in their life, in their world--you know, with their cancer diagnosis or journey and I think guys find a lot of answers that they didn't even know they were necessarily looking for on those weekly calls. So that's another great resource that that's available.


23:53.69

Joyce Lofstrom

So they would find that on your website, Testicular Cancer Foundation.


23:57.98

Connor O'Leary

Correct. Or our Facebook, or Instagram, all of our social media. Yeah, we do calls every Thursday at 7 PM Central time and it's like I said, very relaxed. You know you can just hop on.


24:06.36

Joyce Lofstrom

Okay.


24:16.61

Connor O'Leary

Ask some questions but it's there's no pressure. It's a really, really neat group of guys. So a great resource.


24:25.28

Joyce Lofstrom

Yeah, it is, I'm glad you shared that. So what's next for you? Connor, what's up ahead?



24:30.59

Connor O'Leary

Yeah, kind of just looking in the short term, Joyce, we have a Testicular Cancer Awareness Month kickoff in Nashville where survivors, patients, whoever, we're doing kind of a little meeting and get together more like a testicular cancer meetup. So if there's anybody in or around the Nashville area or they want to fly in, feel free to reach out to me I can get you the details and specifics. We're excited about that, and excited for, you know, Testicular Cancer Awareness Month and really making an impact and ensuring that the message is is heard during the month of April.


25:19.58

Joyce Lofstrom

Right? That's great that sounds like a fun get-together. So my last question is what song, Connor, when you hear it, is one that you just have to sing along to?


25:33.92

Connor O'Leary

That's a great question, Joyce. Thinking off the top of my head, the first song, to be honest, as they came into my head, was the We Will, We Will Rock You song, and I don't know why, but  an awesome song.


25:44.28

Joyce Lofstrom

Oh, that's a great one, yeah, I like that.


25:53.54

Connor O'Leary

Definitely. That's definitely one that I think of.


25:54.53

Joyce Lofstrom

Okay, that's good. I always turn to the Beatles. So I agree. Well, I really appreciate that we could talk and connect.


25:57.96

Connor O'Leary

Oh nice, nice the Beatles. You can't go wrong with the Beatles.


26:09.78

Joyce Lofstrom

Thanks for all you're doing for testicular cancer and for being on the podcast with me.


26:13.38

Connor O'Leary

Absolutely, Joyce, it was an honor and I just can't tell you how much I appreciate it and and especially love to see everything that the Max Mallory Foundation is putting out and these podcasts are incredible, and just really, all the work you guys are putting into it and the difference you're making in the testicular cancer space as well.


26:35.11

Joyce Lofstrom

Thanks, I appreciate that too. So thank you.


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