The Path Forward for this University Swimmer to Testicular Cancer Survivor - Season 2, Episode 10

Alex Obendorf learned he had advanced testicular cancer in 2020 during his senior year of college at the University of West Virginia. He left school and the final year of his swimming scholarship to return home for treatment. It's crucial to know Alex had a 10-pound tumor wrapped around his aorta and other organs, a situation that required an 8- to 10-hour surgery. To show their support, his university swim team, coach, and team psychologist showed up at Alex's door during his cancer journey.

More than two years later, Alex shares his story of survival, mindfulness, and plans for the next phase of his life to give back to others facing similar healthcare challenges.

Listen to Don't Give Up on Testicular Cancer from the Max Mallory Foundation. 

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The Path Forward for this University Swimming to Testicular Cancer Survivor, with Alex Obendorf, season 2, episode 10

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 Alex Obendorf. Alex is a testicular cancer survivor, stage three. He's also been a swimmer and studied Mandarin. So he has lots to talk about in his life with his testicular cancer journey and just athletic prowess. So, Alex, thanks for being here.

ALEX: Yeah, you're welcome.

JOYCE: So why don't we start like I always like to start on the podcast, and just tell us what you would like to share about your testicular cancer story, your journey, what happened, anything you want to share with our listeners.

ALEX: Okay. Well, I was diagnosed with stage three testicular cancer in July of 2018. I received a surgery to remove the mass shortly after getting diagnosed. And upon completion of the surgery, the cancer was found to have moved to my lymph nodes. So it's metastatic cancer, I believe. And it was a non-seminoma, I believe, too. But I had four rounds of chemotherapy. I was hospitalized twice. I had to get blood transfusions and I had a neutropenic fever as well. I had a second surgery to remove the mass in my abdomen and lymph nodes that was non-responsive to the chemotherapy treatments. called teratoma and I guess the mass had encapsulated my aorta and also my inferior vena cava. I had what was called a mixed germ cell tumor which contained four different types of cancer.

JOYCE: Oh my.

ALEX: Yeah. The chemo killed three out of the four types of cancer, but it didn't affect the last kind in the mass, which happened to be bigger than my liver.

JOYCE: Oh, Alex.

ALEX: Yeah, it was like a 10-pound mass.

JOYCE: Oh, my goodness.

ALEX: Yeah. And so. I had to schedule a six-to-eight-hour surgery, I believe. I think it was longer than that, though, at Indiana University to remove it. The doctors recommended that I seek treatment in Indiana because this type of surgery is outside the areas of expertise of the team that I had, and the doctors in Indiana deal with this type of surgery on a more frequent basis. My doctors actually invented the chemotherapy for testicular cancer.

JOYCE: Right, Dr. Einhorn, so yeah, go ahead.

ALEX: Yeah, and then Dr. Carey as well, who performed the surgery.

JOYCE: Well, you went to the right place. I know Indiana, Indianapolis-Indiana University Health Center is the, I'll say main place, but the top place or one of the top places in the country for testicular cancer treatment. So I'm glad you got to a team that knew what to do. So go ahead.

ALEX: Yeah, I feel like I put a lot of trust and faith into the medical team there and even though my recovery from the second surgery was pretty tough to get through, I feel like they did a really good job with putting me back together, so to speak. I felt like my scars had healed really well. And I feel like I didn't have too many issues after the chemotherapy and the surgery, but there are a few issues with vertigo and dizziness and lightheadedness shortly after. So I wasn't sure if that was related to the restructuring of my arteries and veins or what it could be related to, but I knew that I was in physical therapy and doing some like tests for vestibular stuff just because I was getting really nauseous even following the last few months of the second surgery recovery.

JOYCE: You know, I'm just listening to what you're saying. So you had this 10-pound mass around your aorta, which is a major connection to your heart, and then the aftereffects of the surgery. So, I mean, the first thought that comes to my mind, Alex, did you have trouble functioning, breathing? I mean, how did that affect your, I mean, heartbeat? I don't know how else to say it, but did that affect anything like that before you had that surgery?

ALEX: Yeah, so along with the chemotherapy, which I'm sure kind of had an effect on my appetite just due to the sickness and not really feeling, I don't know, I guess like consuming things. I know that the mass was pushing up against my stomach. So I feel like that would kind of have an effect over my appetite. And I know that I almost had to get one of my kidneys removed as well. but they ended up not having to do that. They were able to get all the lymph nodes dissected without actually needing to take that out. Yeah. And then I also had a spot on my clavicle near my collarbone that actually wasn't able to be detected based off of a physical examination. But in the CT scans, it showed that like I had some, I guess cancer mass up there, which had eventually gone away.

JOYCE: Okay, so did this happen to you, what early like [in your] early 20s if I can ask? Your senior year of college?

ALEX: Yeah, I believe I was 23. Okay. When I got diagnosed, it was on my 23rd birthday, I believe.

JOYCE: Oh my, oh boy. Yeah. So through all this, what was your biggest challenge, just through the treatments?

ALEX: I would have to say physically, it was probably the most challenging just because the chemotherapy really took a toll on my body, especially after the first two stages or two rounds of treatment. And so I felt like just trying to get the energy to get up and get moving and keep exercising, and like definitely getting nutrients in, was a big challenge for me. My appetite was not very good, and so I lost a lot of weight. I think I weighed around 145 to 150 pounds at the beginning of treatment, and then I weighed about 110, I think, towards the end of it.

JOYCE: Oh my, wow.

ALEX: So yeah, just trying to keep hydrated was a huge challenge. I know that I had to receive extra hydration after each treatment that I had for the four months that I had [chemo] done. And I felt like it was like mentally discouraging after a while, just because I was frustrated, I was tired, and I just didn't want to be sick anymore. And so, me just kind of wanting to have that sickness--I guess I just wanted to put it behind me and have it just be all done with. So I could move on with my life.

JOYCE: Well, you mentioned all the layers of sickness, and I know you were a swimmer at West Virginia University, and tell us a little bit about that experience of being a college athlete, but just also some of the, oh, I guess the advantages you might have gained from being an athlete and dealing with stress and competition and so forth.

ALEX: Yeah, so I feel like college athletics really taught me how to, I guess, push myself out of my comfort zone on every level, whether that's in the pool, or academically, or on a personal level, I definitely feel like it was a challenge to get through all three years that I had competed. And despite kind of that last year getting cut short of my four-year scholarship, I felt like the leadership and the camaraderie between me and my teammates was really strong. I feel like we really did a great job of building each other up and really encouraging each other, especially when training was difficult and we were tired and, you know, we just wanted to kind of take a break, but I felt like we did a really great job of pushing through. And I don't think that I would have been able to really get through my time as a student athlete without the support of my teammates, who, when I got diagnosed, they all came over to my house in Ohio. I think they drove a van from the university to my house.

JOYCE: Oh, Alex. Wow.

ALEX: Yeah. After my first week of treatment and they all had each member of the swimming and diving team sign a banner and write a little message on it, on a flag, in a white marker. And, so yeah, my coach, my sports psychologist, they came up together and all my teammates, they kind of gave me a letter wishing me well on my recovery, and just some of the things that they really admired about me. And I don't know, I guess they kind of gave me like a pep talk, in a way.

JOYCE: Yeah.

ALEX: Yeah. So each of them [messages, letters] were definitely special to read.

JOYCE: Well, that's a wonderful gift to have and to keep. I would think something you'll probably have and treasure forever. Talk a little bit, if you would, about mindfulness, because I know you had mentioned when we talked before just about the value of learning that during your college years.

ALEX: Yeah, so I really got into meditation and mindfulness probably around my sophomore year or my junior year, and I practiced it a lot on my own as well as we did some things with my sports psychologist, like team meeting days; we met every Friday and just kind of went over some mental health skills that would kind of help us be mentally ready for big competitions. And so mindfulness for me was a huge, just because to be in the moment and to be fully aware of your surroundings and the sensations on your body and just getting really in touch with--I guess everything that's going on around you and like inside and outside your body. I feel like it really makes you look at things from a different perspective, just because I feel like we're not consciously aware of that stuff all the time. So whether it's feeling the board underneath your feet before you take off to go do your flips and twists, and to go in the water or to like tune into your heartbeat and to feel whether It's kind of like a nervousness or an anxiety to feel your heartbeat, letting you know that, OK, well, it's go time and you've got this--like your body knows what you need to do to successfully execute the dive. Or I guess just staying in the moment and being aware of your thoughts as well and not judging them. I guess not judging your thoughts or labeling your emotions. But just acknowledging the fact that you have thoughts or nerves that come up while competing that you just kind of let go and not get attached to.

JOYCE: That's very profound. I am a person that's always struggled with, you know, staying in the moment. I'm always, oh, what's going to happen, you know, tomorrow or five years or whatever. And I think just the way you described it, like feeling the diving board under your feet, or focusing on your heartbeat--things like that are really kind of basic, but none of us or many of us don't think of doing that. I could see where that would be helpful for what, when you're at that moment of getting ready to do a competitive dive. So I think you're fortunate to have someone that in your college career that could guide your team on that. I was going to ask; do you still use mindfulness in your daily life now?

ALEX: I incorporate mindfulness probably on a daily basis. It really helps ease any anxieties or fears or worries or doubts that I may have that might pop up throughout the day. Any negative self-talk that might come into my mind or any thoughts that just I guess are like critical or self-limiting. I feel like I've really done a good job at just really paying attention to my breath and grounding myself and to kind of draw my attention towards what's going on around me, rather than any thoughts or doubts or worries that might come up in my head.

JOYCE: Wonderful. I mean, I was going to make a, just a comment on the little bit I know about sports and mindfulness, but I know Phil Jackson with the Chicago Bulls and I think LA Lakers too. I mean, he was a coach and that was a big part of what he did with his team. So. That's an older comment, I mean, meaning in the past, but so another experience I know you've had that I think ties into your just taking on challenges, is studying Mandarin and you went to China. So tell us more about that experience.

ALEX: Yeah, so my sophomore year in high school, we had an opportunity to get picked for a scholarship to a two-week trip in China abroad. Me and one other student from my class got picked, and the local other school districts that were surrounding the Cleveland area--they had a few students from each school take part in the program.  I have been learning Mandarin for six years.  I took four years in high school and then two years in university and I think that it was an amazing experience. Definitely, it’s opened my eyes to, I don't know, to be able to experience a different culture and to really kind of immerse yourself in the language and to really connect with the people over there. I felt like that was a huge, a huge win for me, I guess. I have always kind of taken to foreign languages, and I've always picked them up pretty easily. And so I felt like Chinese in some ways was easier than English to learn. Yeah. So, I mean, I absolutely loved it.  I originally wanted to take French going into my freshman year.  but then Chinese was going to be offered my freshman year. And so I took it my freshman year and absolutely loved it, and just kind of stuck since then. And I wanted to continue in college and kind of incorporate that into my international business degree. However, I feel like, since I kind of want to change careers or change directions in which [direction] I want to go in life, I felt like halfway through school, I kind of found my calling and it was in international business. And so I feel like becoming a mental health counselor or a clinical psychologist would be something that would be more meaningful and that would really be something that I'd be passionate about. And to be able to help other people get through their tough times and really face adversity head on. 

JOYCE: Well, I think based on your own experiences with cancer and healthcare, I think you would have a lot to offer because you've been through it, you know? And I think that I've talked to other people, and I know friends and other young people with cancer that I've interviewed, have done that. They've started out in one direction and decided, based on their life experience, to go somewhere else.

I know Max, my son, his degree was in video game design. Had he survived, he wanted to get into doing something with healthcare and helping other young adults with cancer. I applaud you for that and must have you come back and talk about that when you're ready, what you're doing. Any advice you would give to other young men facing testicular cancer, whether they think they have it or they might be going through treatment?

ALEX: My advice to any young adults or men that are going through either treatment or just got a diagnosis or kind of need to be going in for their checkups or, you know, just to like check to see if everything is OK. Healthwise, I feel like my takeaway is that no matter what you're facing, I feel like you have the strength to overcome any obstacle that may come your way, no matter how difficult.

I would have to say that support was a huge thing for me, whether it be my family members or my friends or my peers or my medical team. I feel like keeping your network close is one of the things that got me through treatment and to really never lose hope.  I felt like it gave me the strength and determination to beat the cancer and to kind of gain my life back a little bit.  I would just have to say, take care of your body, take care of your mind as well as like your soul. Yeah, so I feel like self-care is a huge one, really tuning into what your body's telling you to do; I feel like you should definitely listen to the different messages or signals that your body's kind of sending to you and so if you feel like something's off or something's wrong, I would definitely say go get a checkup if you haven't already And if you've already gotten a diagnosis, just know that it's only temporary and that things can get better and that you can overcome this obstacle.

JOYCE: That's wonderful advice. Yeah. So thank you for that, Alex. So my last question is more of a fun question, and it might have I was going to say more special meaning for you since you're in Cleveland, and that's where the Rock and Roll Hall of Fame is, which, you know, I've never been to that. But my question is basically, any song that is, you know, a favorite song that you hear that you always want to sing along to? Do you have one? And if you don't, that's okay. But I have to ask, so.

ALEX: Hmm. I don't have a specific one.

JOYCE: Well, I know you mentioned in an earlier conversation we had that you really like all kinds of music. So any want to just tell us a little bit about your music preferences and we can end our show with that.

ALEX: Okay. Yeah.  I definitely like more upbeat music.  So electronic or, like dance music. I really like, I guess pop or indie or alternative, kind of like a wide range of things, just depending on my mood and how I'm feeling, and, I don't know, what activities I'm doing. I feel like that has a big influence over it.  But yeah, there's not a specific song or type of music that I prefer. I also like classical, like instrumental stuff, just because I grew up learning instruments, whether it be the viola, or saxophone, or piano, or like even choir singing.

JOYCE: So you play the viola, and the sax, and the piano?

ALEX: I did, yeah.

JOYCE: Wow, that's really a good range. I played the violin in grade school orchestra, and I played the piano through eighth grade, took lessons, and then I quit. But I have the piano that I grew up with. I just need to practice. So do you still play any of those instruments?

ALEX:  I can still play piano a little bit. I wouldn't remember exactly which keys are what on the saxophone, but I definitely could probably play a few notes here and there. I definitely know how to maneuver the reed and everything, so.

JOYCE: Well, I can see why you like a lot of music, if you have all those instruments in your repertoire. I mean, that's very nice. So I appreciate that you would spend your time talking about your testicular cancer journey, Alex. And I really meant it maybe in a year or so, I'll get back in touch with you or sooner and just find out what you're doing and if how you are, what's your next step is going to be.

ALEX: Yeah, I would like that.

JOYCE: Yeah, I would too. I think it'd be very interesting just to, you know, if you decide to become a counselor, what's happening and so on. So, again, thank you.

ALEX: Yeah, thank you for letting me share my story and, I don't know, just give some personal words of advice or wisdom or anything that I've really learned throughout the journey, so.

JOYCE: No, it's helpful, so thank you.

Thank you for listening to 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 www.maxmalloryfoundation.com/podcast to listen to previous podcast episodes or donate to the foundation and join us again next time for another episode of Don't Give Up on Testicular Cancer.

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