It's Been 10 Years since Losing Max to Testicular Cancer

It's Been 10 Years Since Losing Max to Testicular Cancer

Episode Summary

In this special episode, host Joyce Lofstrom is joined by the entire team behind the Max Mallory Foundation: Max's dad, Chuck Mallory (Treasurer), and son, John-Mark Mallory (Executive Director). Together, they reflect on a poignant marker of time: the upcoming 10th anniversary of losing Max to testicular cancer in May 2016. 

The family discusses the foundation's evolution since its start in 2017, its impactful scholarship partnership with Max's alma mater, the University of Wisconsin-Whitewater, and how the "Don't Give Up on Testicular Cancer" podcast serves as a cornerstone of outreach. They also dive into critical modern issues surrounding testicular cancer advocacy, including the gaping void in mental health resources for young survivors and how a new generation uses social media and AI to process medical fears. 

Episode Timeline & Chapters

• [00:00:00] – Introduction
  • Welcome to the podcast and introduction of the Max Mallory Foundation board members: Joyce, Chuck, and John-Mark. 
• [00:01:45] – Reflecting on the 10-Year Marker
  • The family shares what is on their minds as they approach a decade without Max, the surreal nature of passing time, and how sibling grief and parental healing change over a decade. 
• [00:03:45] – Chuck's Writing & Healing Journey
  • Chuck shares a personal update on emotionally processing his grief and his current efforts to write about his years with Max. 
• [00:07:15] – The Roots of the Max Mallory Foundation
  • The family formally established the private family foundation in 2017 to carry on Max's legacy. 
• [00:08:45] – Honoring Max Through Media Arts & The MAGD Scholarship
  • A look at the foundation's scholarship program and funding for the Media Arts and Game Development (MAGD) festival at UW-Whitewater. They discuss the use of game design for educational cancer journeys. 
• [00:11:15] – Milestones of the Podcast & The Mental Health Gap
  • Celebrating nearly 80 live episodes and identifying a critical gap in cancer care: why the medical community frequently overlooks the psychological and mental health needs of young cancer survivors. 
• [00:14:50] – The Changing Landscape of Advocacy & Social Media
  • How the 20-to-30 age demographic uses Reddit, AI, and social media to express medical anxiety. The family addresses why outreach must pivot from traditional school visits to digital spaces. 
• [00:18:00] – Overcoming the Stigma of Men's Health
  • A discussion on why young men delay going to the doctor out of fear, a lack of preventative screening advice from pediatricians, and learning from the success of breast cancer awareness campaigns. 
• [00:21:30] – Looking Ahead to the Next 10 Years
  • Final thoughts from Joyce, Chuck, and John-Mark on carrying forward Max's mantra: "Never give up."  

Key Takeaways from This Episode

• Grief is a Marker, Not a Milestone: Passing a decade without a loved one isn't a traditional milestone to celebrate, but rather a profound marker of time to celebrate a life well-lived. 
• Mental Health is Part of Survivorship: Medical teams excel at testing numbers and treating tumors, but there remains a massive systemic gap in checking on a survivor's mental health post-treatment. 
• Advocacy Must Meet Youth Where They Are: Young men today turn to online forums like Reddit or AI tools rather than their immediate circles when processing potential cancer symptoms. Awareness campaigns must actively occupy these digital spaces. 
• Break the Silence Early: Pediatricians and parents need to explicitly normalize testicular self-exams for young men around ages 12 and 13 to catch anomalies early and strip away the fear-induced stigma of seeking help. 

Connect & Support

• Visit Our Website: Max Mallory Foundation  
• Listen to Past Episodes: Catch up on our library of 80+ episodes featuring survivors, caregivers, and leading cancer researchers. 
• Make a Donation: Support the MAGD Scholarship and our ongoing testicular cancer awareness initiatives by clicking here. 
• Subscribe: Please subscribe to Don't Give Up on Testicular Cancer on your favorite podcast directory so you never miss an episode!  

Transcript

Don't Give Up on Testicular Cancer 

It’s Been 10 Years Since Losing Max to Testicular Cancer

[00:00:00] 

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 nonprofit 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 [00:01:00] survivor. 

Joyce Lofstrom: Hi everybody, this is Joyce, and we have a special program today for our podcast. We have our whole foundation, the Max Foundation, and we're going to talk about what we've been doing for the last 10 years since Max's death in 2016. 

So, you all know me. I'm Joyce Lofstrom, and I'm also the secretary of our foundation, the Max Mallory Foundation.

Joyce Lofstrom: Chuck, do you want to go next? 

Chuck Mallory: Sure. I'm Chuck Mallory. I am the treasurer of the foundation, and I'm in North Carolina. Everybody else is in Chicagoland. 

Joyce Lofstrom: John-Mark. 

John-Mark Mallory: And I'm John-Mark Mallory. I'm Max's older brother. I'm the executive director of the foundation. But yeah, it's good to be here. 

Joyce Lofstrom: We're just going to talk a little bit, as I said, about Max and what we've been doing regarding [00:02:00] testicular cancer. And so the first thing we want to discuss is this 10-year anniversary. 

Max died in May 2016, so May 2026 will mark 10 years. This is also Testicular Cancer Awareness Month, as we record this. (We recorded this podcast in April.) So, what's on each of our minds right now when we think about these last 10 years? What do you think about Max and about your life? So I can go ahead and start, just to get us going. I can't believe it's been 10 years. I mean, life always goes by faster than you think, but it just seems like it.

Joyce Lofstrom: I don't know what it seems like, but 10 years seems like a long time, yet also like a short time. And when I think of Max, I always think about what he might have been doing now, game design, and so forth. But I'm also glad that, glad isn't the right word, but if he had been through a lot of pain with his cancer, I'm, I'm glad he [00:03:00] didn't have that. We all miss him. I miss him too. And I think, in terms of the podcast in life, it gives us a way to give back to other people who might be facing this disease. And I hope it honors Max as well. So, Chuck, do you want to go next? 

Chuck Mallory: Sure. Of course, I can say many of the same things.

Chuck Mallory: It used to seem more recent to me, I think, because it took me a very long time to get over his passing, and it was very hard, but it seems like now I can manage it quite a bit better. If someone had told me then what the past 10 years would be like, losing a son, I wouldn't have wanted to hear it.

Chuck Mallory: I don't know if I would've believed it, but it's really good that we decided to establish the foundation and do the things that [00:04:00] we did. It is important for me to be able to do things in Max's name and in ways that will honor him because even though we'd all rather have him here, we didn't have a choice.

Chuck Mallory: It happened. So it's a healing thing to know that we could do something, keep his name out there, keep it going, and do something positive. Plus, he wanted to help others, other young adults with cancer, so we can continue his mission, and all of that's really helpful. Yeah, I went through a lot of changes.

Chuck Mallory: I moved away from Chicago, and I had always wanted to write something about the years with Max. And no, only now am I able to even do that emotionally. So I'm proceeding with that as well. But life goes on, and as long as I can, I'll just keep doing things on his behalf. [00:05:00] 

Joyce Lofstrom: John Mark. 

John-Mark Mallory: I echo a lot of the same things, but I think it's a little bit different for me, obviously, because you all are his parents. So it's a different feeling that I can't quite relate to because I don't have kids. And I think a lot about what Max would be doing.

John-Mark Mallory: And that was something that it's always kind of been, the term sibling rivalry exists for a reason. It's always kind of been the nature of siblings to compare themselves to one another. And I just think for a long time after Max died, I felt so bitter because I felt like Max was going to be so successful, and that was like taken from us. But, at the same time, I know that he would not want me to ruminate on that negative kind of aspect of it.

John-Mark Mallory: I think what [00:06:00] I think a lot about is obviously, where he'd be in life. But I also just think about things that happen and events or different stories or something that we would have talked about if you were here, what he would think about this or that. I do think it's kind of surreal that it's been 10 years.

John-Mark Mallory: It doesn't seem like it's been that long. When you say 10 years, it just feels like a marker of time. It's a decade. It's something we measure in a separate unit of time. And it doesn't feel that far away. But it is. When I think back, it's frozen in time, where he was in life when he died, what he was doing, what he was trying to accomplish, and how he was changing, too, because he did want to do game design.

John-Mark Mallory: But I know that when he got [00:07:00] sick, he was really considering, once he got better, helping other people in this situation. I think it's good to have a foundation that creates opportunities like that. My feeling, obviously, as you all know, is that I could be doing more, and I want to do more.

John-Mark Mallory: That's something that I think about a lot. It's just, overall, very surreal to think that it's been that long and that this is the anniversary. It's not a milestone in the traditional sense, but it's a marker of time passing. It's been a lot, but I'm glad that we've been able to get to this point.

Joyce Lofstrom: I like what you said there, John-Mark, about how it's not really a milestone. People celebrate milestones, but they are markers of time. 

John-Mark Mallory: Mm-hmm. 

Joyce Lofstrom: We're celebrating his life. But that's a nice way, or a different way, to think about it. So I'm going to ask [00:08:00] Chuck, if you would, to talk about the foundation. We started it in 2017, and you're really the person behind it, getting it going. Talk about how we got it going and where we are, and then John-Mark and I can jump in if needed. 

Chuck Mallory: Well, we started it in 2017. Of course, we lost Max in May 2016. We knew he was sick, but we didn't know that it would be the outcome. It took a while to get through the initial phase of grieving and to think about how we could carry on his legacy. So it was formally put together and registered with the state in 2017. And we were fortunate, I think, in one small way that there was no other Max Mallory Foundation. If somebody had already used that name for a foundation, we wouldn't have been able to. 

Chuck Mallory: And there are a lot of people I've discovered named Max Mallory out there in the world. Over time, I found that out. But we were set up as a private, nonprofit family foundation, which was the best way for us to start and the easiest way to manage what we needed to do. And then we began doing activities, and that is sort of twofold.

Chuck Mallory: We wanted to support Max, and that was the point in honoring him by doing what we could have done. In his place. That's where the foundation's work on testicular cancer awareness comes in, because he wanted to work with young adults. He wanted to bring up TC awareness. Sure, others have been doing it, but there's never enough.

Chuck Mallory: There still isn't. And so that carries on his goal. The other thing was that he had a real love for the media arts and game development department at the University of Whitewater, Wisconsin, where he [00:10:00] graduated. And we did establish a scholarship in his name for students in the media arts and game development majors, as well as their annual festival, MAG-D, which gives prize money to young students in that field. 

And one thing that's interesting, which you guys may remember, we were at a MAG-D event where they were given the awards a few years ago. These aren't just games to play. Some of them are educational. Max designed a game about a cancer journey and was working on one as well.

Chuck Mallory: So, younger people are learning this way, and it's not just fun in games. There are things to learn, things to interact with. And so that's why I think that major is important, but we kept the foundation going all these years. I'll keep going. And the podcast has been a big [00:11:00] cornerstone of it because our reach just continues to grow.

John-Mark Mallory: Just to add briefly to that, it's been very cool to be involved in that MAG-D program that Max was so fond of at his alma mater at Whitewater. And, going there, especially in the couple of years after we established the foundation and talking to people who knew Max and were still in that program at the time, was very powerful for me because it was kind of, not a sign, but just a confirmation that this was the right thing to do to honor Max. And it was a good way to keep his legacy going and be associated with something that he was so proud of and fond of as well. So that was another motivation.

John-Mark Mallory: And I definitely think, [00:12:00] obviously we can always do more and do different things, but I'm very heartened or proud of what we have done so far with the program. It's been great. 

Joyce Lofstrom: Yeah. I agree. And I think that it's something students need. A scholarship is always a good way to carry on someone's name for what they did or what was important to them, like at Whitewater.

Joyce Lofstrom: So, and I think on the podcast, we thought about it, or I thought about it, well, probably for two years, because once we had the foundation going, I was thinking about the podcast, and it took a while to get it going and established. I enjoy doing it, and I think we've learned a lot just talking to all these different people, all the men who have had the disease, their caregivers, and some researchers.

Joyce Lofstrom: There are so many people out there who have a story to tell, and I think that's [00:13:00] important for us to be able to share those stories. And, as you said, Chuck, there are a lot of people already doing testicular cancer work through their respective organizations. But I have to agree. I don't think there's enough out there.

Joyce Lofstrom: And so I'm glad we could do this and make it work for all of us, and hopefully for our listeners. We have about 80 episodes live now, which, to me, is amazing. So I just want to repeat one thing I learned, which segues into my question: what do you think Max would think?

Joyce Lofstrom: But, there's so much about mental health now in general about life. There's new research out there from people with testicular cancer who are looking at what happens once you do survive. Are you okay with everything? 

Joyce Lofstrom: And one person who will be on the podcast in the next month or so said that he's in his 20th year of survival [00:14:00], and not one doctor asked him about his mental health. And I mean, that's a recent statement. It's like nobody asked him in all the years he's been dealing with it. 

Joyce Lofstrom: So, I think that's one thing we've done. I hope people listen. I hope people talk about researchers who can explain why survivorship is important in dealing with chemo, surgery, jobs, and everything that goes with survival.

John-Mark Mallory: One thing that ties into that is with the podcast, I'm surprised, not really, but somewhat surprised at just how many people have turned to humor as their main way to deal with or accept this diagnosis.

John-Mark Mallory: I do think that kind of ties into it, because it is something that can mentally be a little bit of a relief [00:15:00] when you are going through something so serious: try and use humor to deal with it or accept it.

And I have definitely noticed that there just aren't that many resources for any cancer treatment, really, when you're going through it, especially mental health resources or checkups for that. It's not really a team mentality in that sense. With mental health, it's more of a, they're looking at numbers and tests and everything of the cancer, which I understand.

John-Mark Mallory: But yeah, there is definitely that need. I think that is a gap in the system for sure. 

Chuck Mallory: One thing that I need to remind myself, and it's important for awareness in what we're doing, is that we've heard in the media that the younger generation, the people in their twenties, let's say 20 to 30, which is a big part of the group of young men who [00:16:00] do get this particular cancer diagnosis. 

We hear these stories about how they're going to AI to ask questions. How they go on social media to express their fears, hopes, and things like that. This is a fully social media-oriented generation. They are fully in this for everything, turning to social media for answers for people to look at and talk to, and things like that.

Chuck Mallory: And that's why awareness work is going to probably be moving in general into a different way or a different way here. We've always had this. People going to schools, going to coaches, going to teams, talking to them, all that's great. Get the word out there like that. 

Chuck Mallory: But we’re going to need more information to come out through social media, podcasts, video, and similar channels, where people can reach out. It's pretty apparent that there's also an emotional component to mental health, because I've seen [00:17:00] on Reddit in particular, where a lot of young men post something. It's either I don't want to tell anybody, which we hear, or I'm going to go to the doctor. My parents know, but now I'm terrified.

Chuck Mallory: So I think there's going to be a whole new wave of people understanding the mental health aspects of it. And I think they've worked on this in other areas of cancer, of course, but that's maybe something we can bring out, too. 

Joyce Lofstrom: Yeah. Yeah, that's a good point.

Joyce Lofstrom: Maybe that's an angle to take.

John-Mark Mallory: Yeah. 

Joyce Lofstrom: We've had a couple of people on the podcast, mostly caregivers, but people with testicular cancer that basically said, I didn't do anything for a year because I was afraid of it. One person told me he thought he was going to die, so he just went and did everything he wanted to do, and then a year later, he went to the doctor, and he was okay.

Joyce Lofstrom: It's that whole thing [00:18:00] about men having to be able to talk about their health and do something about it. So it's still an issue. 

John-Mark Mallory: Well, I think it's something that you can see that through line. Even the most famous case of testicular cancer ever is Lance Armstrong.

John-Mark Mallory: And even he waited four months and knew that something was wrong. Obviously, he had symptoms. He had a very swollen and tender, like very painful, testicle injury, and just didn't do anything because he just thought it was part of his training or his sport. He didn't really talk to anyone about it.

John-Mark Mallory: Didn't mention it. And I think that is definitely a problem and continues to be an issue here in how young men are discussing this. 

Joyce Lofstrom: Yeah, I agree. And I wonder, again, about some of these men on the podcast. Only a couple of them have said that a doctor, a pediatrician, told them to check themselves.

Joyce Lofstrom: The [00:19:00] doctors don't do that. They don't say, as you become older, like 12, 13, that's something you should do. That just seems so basic to me. I mean, now that I know more, I mean, I didn't know that before.

Chuck Mallory: I wonder sometimes if some medical professionals think, let's cover these basic things that are general problems for a lot of young people, and think maybe this is a rare, odd thing that's out there, may not be as important to mention.

Joyce Lofstrom: Right. 

Chuck Mallory: And of course it is. But we're still getting there. We have to keep working. We're still trying to get this message across that you’ve got to tell people if it happens, if you find a lump, anything. We can look at the journey of breast cancer advocates, because that's, like, way ahead in awareness, getting it treated, getting checked, and things like that. 

It's coming, but it's still going to take some [00:20:00] time for testicular cancer awareness and for people not to be as worried about it to get out there. I think one thing that will happen with time, naturally, we don't need to wait for it; we can help now.

Chuck Mallory: By what we're doing, there is such a fear attached to cancer, and of course, it's rightfully so. I can look at my own lifetime and go back to when it was almost certainly a death sentence, it seemed like, or if people had to get treatment, it was really horrendous, and they didn't really have a great chance.

Chuck Mallory: We progressed all these years. There are a lot more treatments, and there are a lot more people getting checked out earlier, and more people are living who are diagnosed with cancer. But the mentality, it seems, hasn't shifted very far. It's just such a bad word that scares people. And people don't want to talk about it and say things about it.

Chuck Mallory: There's naturally going to be fear. As medicine gets better, that's going to [00:21:00] change. But in the meantime, all the groups that offer programs like ours have to keep doing them. 

John-Mark Mallory: Yeah, I agree. I agree. 

Joyce Lofstrom: So, any final thoughts about what Max might think about what we're doing? About anything we've talked about with Max?

Joyce Lofstrom: Anything we want to just go around and end with? 

Chuck Mallory: Well, I can start. I'd like to believe that Max is looking down and is very proud of this. A lot of this is what he wanted to do. And so that's the good part. It's carrying on something he wanted to do so much, and we miss him.

Chuck Mallory: We always will, but we can do this. 

John-Mark Mallory: I think I feel the same way. I have ups and downs with it. I have a slightly different relationship with that [00:22:00] idea of what Max would think. As you all know, when Max got sick, I was not in a good place in my life. I was not really working.

John-Mark Mallory: And my job kind of became to help Max and take him to appointments. I would go over to dad's during the day because he didn't want to be there by himself. And at that time, that was kind of my main responsibility. I took it very seriously. But at the same time, I knew that Max wanted me to do more with my own life and get out there, work, and have a stable career and everything.

John-Mark Mallory: That wasn't happening when he passed away. And that's one thing that I think about. I always think I can do more, and I think he would want me to do more and try new things. But I do think he is proud of us for [00:23:00] not giving up and for also trying to carry on the wishes that he expressed to us in terms of what he wanted or what his plan was when he did get better. That really was his thought. He was going to get better and do this type of advocacy work for young adults with cancer and testicular cancer.

John-Mark Mallory: I do think that's a really important thing that we carry on. Like I said, personally, I definitely want to do more and be more involved. I hope that in the next 10 years of the foundation, if we're lucky enough, we'll be doing a lot more and different things.

John-Mark Mallory: But I am proud of what we've accomplished so far, and I think Max would be too. 

Joyce Lofstrom: Yeah, I agree with what you both said. I can't add to that because I think you would be proud too, and I'm just glad that we can do it as a team. I think it's nice that the three of [00:24:00] us can figure it out and, whether it's going to Whitewater or providing that scholarship or the podcast, writing, or anything we can do. It's been all of us trying to get that done for Max. 

John-Mark Mallory: Mm-hmm. 

Joyce Lofstrom: Let's look ahead 10 years. Well, you never know. 

John-Mark Mallory: That's kind of how I think of it. Max was a very accepting person, so I do think he would be very happy with what we've done and wouldn't want to be like, "you didn't do enough."

John-Mark Mallory: There's more we could do in the future. And I think what you said, Dad, about how things are changing, how the advocacy is changing. That's a very interesting opportunity for us, in terms of how we move forward. So I'm glad we have this and the opportunity to help people [00:25:00]. 

Joyce Lofstrom: Well, I will end with what Max always said when he was going through his treatment, which is that he never gave up. We won't either as we keep going with our Max Mallory Foundation and the podcast. So thanks, everybody. 

Chuck Mallory: Alright. Thank you. 

John-Mark Mallory: Thank you. Bye.

Closing: 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 www.maxmalloryfoundation.com/podcast to 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 [00:26:00] Cancer.