Surviving the Loss of a Sibling to Testicular Cancer - Episode #13

John-Mark Mallory lost his only brother, Max, to testicular cancer. He shares experiences during Max's illness, his grief process,  career path, and, now, plans for the Max Mallory Foundation as its executive director.  Listen to John-Mark on how to survive the loss of a sibling to testicular cancer. 

Transcript

Surviving the Loss of a Sibling to Testicular Cancer - Episode #13

28:07

SUMMARY KEYWORDS

testicular cancer, young adults with cancer, cancer survivor, The Max Mallory Foundation, grief counseling 

00:12 Joyce Lofstrom

Welcome to Don't Give Up on Testicular Cancer, where cancer survivors, caregivers, and others touched by cancer share their stories. The Max Mallory Foundation presents this podcast in honor and memory of Max Mallory, who died at age 22 from testicular cancer.

I'm your host, Joyce Lofstrom, a young adult and adult cancer survivor, and Max's mom. 

Hi, this is Joyce, and with me today is John-Mark Mallory. John-Mark is Max's brother. He's also my son. And John-Mark also serves as the executive director of the Max Mallory Foundation. 

So John-Mark, I'm glad you could join me today for the podcast.

00:56 John-Mark Mallory

Oh, thank you for having me on. Sorry, it's been so long since you started. But I'm glad to be here, and finally, do an episode of this. So, thank you for having me.

01:11 Joyce Lofstrom

Well, I'm glad that you could do it. And it's probably a good way to start the new year, 2021. 

My first question is just, really, around your journey with Max's illness.  Just talk about what it was like, being his brother as he went through his cancer journey.

01:29 John-Mark Mallory

Wow. You know, it's obvious; it was a really difficult experience. It was something that I had a little bit of experience with, with you, but I was a kid more when you were going through cancer treatment. So I wasn't as involved. 

And with Max, I think it was just kind of such a shocking thing to happen that we weren't expecting, obviously. So it ended up, you know, being a much more involved process than anything I had ever been through before with like a family member, you know, like my mom, or anyone having cancer around me.

I think with how serious it was too right off the bat; it really was an experience that I just kind of had to take day by day, you know, hour by hour, almost because so much of it was foreign to me. (It was) I was just trying to learn as I went and trying to support Max as best as possible while also trying to manage my own life and issues. 

When I look back on it, it's kind of a blur. Sometimes it's hard to remember specific things. Unless it was like a really big event, and then randomly, I will start to remember more details. But I think that has to do too, with just the trauma of losing Max as well. 

But that's just my analysis personally, understandably, you know, it was a new experience for me and something that I just had to kind of do my best with him. And Max understood that too. And I think that helped me, him, you know, being so understanding, even though he was the one that was going through this tough situation.

03:39 Joyce Lofstrom

You know, I think you're right.

And the one thing I remember you and I being together that first night after we found out and he was in the hospital, is driving home and both of us worried because at some whatever point it was, it may not have been that first night. But when we found that that cancer had spread to his brain, I think yeah, it was something we thought would be okay. But hindsight is...you were saying it's something that really kind of changed the course of his recovery.

04:13 John-Mark Mallory

I think so.  And I think too, we were just trying to be positive, you know, and that's something that I hear a lot from people taking care of a person with cancer or a family member with cancer that they're involved with. 

The positivity thing I understand; we have to be positive, you know. We have to try and be optimistic and hope that will help the person in their journey as well, you know, and help them feel better and have a better mental outlook on their treatment and things like that. 

But at the same time, I think just not ever having gone through something that serious with cancer. It was hard sometimes to look at the other side of it. And especially with something with what you're talking about with Max. When we found out he had brain cancer, the outcome or the outlook was still very optimistic from the doctors and things like that. But it is it's a scary thing. 

It's just that's the one thing that when it goes to brain cancer, that's it, to me, at least at that time was kind of a different ballgame at that point. And it is, you know, it was just sometimes overwhelming. 

I remember the things, I remember pretty clearly, early on was just kind of getting bad news after bad news kind of thing. You know, it was good news initially, after we got the diagnosis, because we thought he just had some sort of stage four cancer, and once they specifically explain what it was, that was better news. But after that, there was a lot of, you know, challenging moments along the way. So it was a difficult journey.

06:09 Joyce Lofstrom

Yes, it was. And I think too, is testicular cancer. They were, they talk about it, you know, as different stages or whatever.  It was hard. And I guess the thing I remember, when I think about it now, was the thing that was upsetting is that no one ever indicated to us that he might die. And that's, that's just a challenge. 

But along the same line, you know, Max was your only brother. And I remember at the time; we talked about how hard it was to find others who had lost a sibling to cancer. 

Can you talk about it? You know, kind of extending that same question. But when you think about losing your own, your own, rather your only brother, any thoughts around that process? And how you got through it?

07:00 John-Mark Mallory

It's something I'm still getting through, I guess, you know, I mean, it's something that's always with me. And I think about that, too, because I think my first instinct because I wasn't, as you know, I wasn't there, I wasn't present at the hospital.

In Indiana, when Max, you know, had a seizure, and which led to his death. I was there, you know, obviously, as you know, when he did pass, but I wasn't there initially when that happened. And I was, as you know, going through my own things, personally at the time and not in a great place.

So, my first instinct was to just blame myself and tell myself that I should have been there. And if I was there, throughout that last process, when Max was getting stem cell chemo, that I would have somehow said, or done something that would have saved him, or they would have looked at it differently, and then been like, "Oh, you're right; we didn't realize, now we were going to be able to save him. Thank you."

No, I thought that me not being there was the reason, you know, a big reason that he died. And that's just, you know, I had to go through a lot of work to stop blaming myself in that way. I had to go to a grief counselor, which was very helpful; I went to multiple support groups. And that definitely helps to find people that did lose a sibling. Those
support groups are a little bit more rare, but they do exist.

And I know that now, in the time of the virus and virtual meetings, it's more virtual now. But, you know, those resources do still exist. And that was honestly the biggest thing besides just being around family and talking to you and dad and other family members and Max's friends, like, that was the thing that pushed me to see that I could get through it. But it's still, it's still something that will always be there with me.

It's something that I, you know, I used to get upset at myself if I didn't think about Max or say something to Max in my head every day. And I just stopped at some point. I don't even know, you know, and this is kind of the time aspect of it.

At some point, I just stopped getting mad at myself about that. And it happens almost every day anyway; I will see something or think of something that reminds me of him or something like, oh, he would be interested in that. So it happens pretty naturally.

But I think that there was a lot of beating myself up at the beginning.  And some of that still remains but just having support and other people to relate to really did help me kind of take it easier on myself and realize there was, you know, something we could do with this. You know, make it into, it's not going to be made into a positive, but at least, get something positive out of it. That was kind of my shift in the focus at that point.

10:16 Joyce Lofstrom

You know, I think that's a good way to look at it, John-Mark, because I thought that too, at different stages of his illness, you know. When you always think that you, the parent, or the brother or the caregiver can jump in and make a difference.

John-Mark Mallory
Right.

Joyce Lofstrom
There are still things that I question, but yeah, I don't know. We'll never know if anything would have made a difference. But I think you also make a good point about how it's always with you, his death. 

But it's; also, I'm kind of the same way, you know. There's something that will happen that I will think of Max or especially with computer things, like Oh, Max might have been able to tell me about this or something like that. So, I think it's a good thing because it's a natural way to think about him. So

11:09 John-Mark Mallory

Yeah, definitely.

11:12 Joyce Lofstrom

So what about your own life? What changed philosophically after max died for you?

11:17 John-Mark Mallory

Well, a lot of it. 

I'm trying to think of the best way to make this short. I think there were a lot of negative feelings when Max first passed, as are to be expected. Philosophically, I don't think anything changed at that point; I was just kind of in shock. 

It was a point where it was; I had accepted what happened. I knew it happened, but I just wanted to figure out a way to make, to reverse it. And it was that obviously, that's not logical. It's not real. 

But it was something that took me a few days to really process, and I was really just trying to help you and dad and trying to help them, trying to help them grieve, really trying to help family members grieve. And that was, I think, just an instinct because I had not had experienced losing someone like this. I had not really lost anyone very close to me in my life at that point other than grandparents, which that's expected, you know. 

So I think philosophically, it made me realize that things in my life needed to change in certain ways. You know, in my career, I was kind of just aimless, just kind of looking to find something that fell in line with the degree I had. (It) wasn't necessarily something I wanted to even do. 

But after that, I think that due to my conversations with Max, when he was sick, I realized that I needed to go in a different direction in life and my career. And it was really just the idea of service and serving. 

I think that was because Max made it a point to tell me that he was going to leave his career in game development to help other young adults with cancer once he got better. And (he wanted to) try and work with one of these foundations or one of these nonprofits to be a part of a network of survivors that could help people going through what he went through. And that was kind of what brought me back on track after he died. 

I was just kind of in that dark place. It gave me a purpose to realize I needed to help others. And it was something I wanted to do, but it was also something that Max, I know, wanted to do.

14:00  Joyce Lofstrom

So, we started the Foundation after Max died, and we include you, and you're the Executive Director, Chuck Mallory, and me. So, I'm just interested in your perspective, John-Mark, on why you think we established the Foundation and what it is set up to do?

14:22 John-Mark Mallory

Well, I think why we started is tied back to what we were just talking about with what changed philosophically in our lives. It was something I really wanted to help with after recalling those conversations with Max and realizing that there was more to life than just going through the motions, getting a degree, getting a job and, and, then, you know, fill in the rest with whatever your aspirations are. 

I never really thought of service as something I could do, or being of service to others was something I was equipped for. So that definitely was a philosophical change for me that led to creating the Foundation together. I think that that was something we talked about right after Max died.

I understand why we talked about it then, even though we didn't immediately set up the Foundation, because we were just all in such grief and shock.  You're just trying to cling to anything that can be a positive or be some light at the end of the tunnel. 

So, I think that was the original intent of starting; it was just kind of to help others, whether it be young adults with cancer, testicular cancer survivors, people that are in Max's program that Max graduated from the University of Wisconsin-Whitewater. 

It was just really about helping and doing what we could, and it was started slower. The initial thing that we did, which is great, and we continue to be a part of, is being involved in the University of Wisconsin-Whitewater, MAGD, the media arts and game development program at that school. It is a really great program for all different types of media arts and games, video games, video, online things, programming, all of that is, you know, really the kind of the next wave of careers and a huge booming industry, especially in that area, even in Wisconsin. 

Max loved that program. Max helped steer people to that program from other majors that maybe weren't satisfied or were interested in some of the aspects of the MAGD program. So that was kind of our first objective, or our first involvement was to really help support them. 

They have an expo every year at the end of the school year in May. And we support that by funding the grand prize, which is just for the best presentation at that Expo. And then, we also fund a scholarship through the MAGD program as well at the University of Wisconsin-Whitewater, for a MAGD student there, just to give them a little bit of assistance, because it was such a program.

It was a program that Max had a real fondness for, and I think he got a lot out of it. And it really helped him in life. He got a job right out of college. And that's also because he works very hard. 

But it feels good to help students in that program because we know how much he loved it and how much it meant to him. So that's, that's one of the main things we do.

18:05 Joyce Lofstrom

And that's a good point because he did love the program. And we've been able to fund like a junior through for two years, a junior year and senior year. That person gets a scholarship each year. 

So, I think that's; I like what you said about that because it's a very good way to give back. And it's also very meaningful because of Max's love for it and participation in it and so forth. 

What do you think is next for the Foundation? What do you see on the horizon?

18:40 John-Mark Mallory

Well, I'd say that there are a lot of good things on the horizon for us.

As you know, we've been raising money, and that's been going pretty well. We have more resources now to help more people. The next step is working with some other existing foundations, especially those related to testicular cancer, to assist in any way we can and find a way to help young adults, possibly help set up some support groups for survivors or caregivers. And just trying to figure out a way to cast a wider net, I would say, to help more people.

I think another thing that we would love to do is have a get-together with all of Max's friends and family and celebrate him and raise money and really have a big event for the Foundation. We were going to do that before the pandemic struck, the lockdowns, and all of that.

We will do that once everything gets back to normal, would love to do that, love to have an event at some sort of, you know, like a barcade or something. Max really loved going and playing games and hanging out with friends. 

So, that was definitely something we would love to do to honor him. And I think that we are trying to move forward with ways to support those affected by testicular cancer, especially because I know Max was big into helping those, those young adults as well. So that's, that's what's on the horizon, a lot of good things. So stay tuned.

20:27 Joyce Lofstrom

Sounds good. I especially like the idea of us organizing some kind of in-person event when it's safe to do so, of course, 

Tell us about your life. What are you doing now?

20:41 John-Mark Mallory

Well, so I am in the suburbs of Chicago, as you know, and I work for a company called Rainbow Hospice. I've worked there for about a little under two-and-a-half years now. So, what I'm doing there is working in the admissions department; I help people get started in this process of starting hospice for a loved one, whether that be through a facility, through a hospital, or just through word of mouth. (I) help, kind of, get them the assistance, the family the assistance, they need to start hospice care for their loved one, that is something that is directly related to kind of the change in my life. 

I would have never imagined myself doing something like this, especially with hospice. I used to be very scared of even thinking about death or talking about it. And now that's what I do every day sometimes. 

So, it's, it's definitely been a change. For me, it's been something that I find very rewarding. It can be stressful, of course, just because we're dealing with something that is so time-sensitive in that sense. 

But I would say that the reason that I love working for the company, as well as just what I do, is that they had a sibling support group when Max died, around the time Max died. And that was something that really, really helped me; it really kind of just gave me hope and helped me realize that there are other people out there that are going through the same thing that I'm going through. 

At that point, I was wanting to give back to them. I volunteered for Rainbow Hospice. So, I was actually a volunteer before I worked there. 

And, you know, it's just, it's an organization that has given me a lot, so I'm very honored to work for them and help people in their name. And that's kind of what I'm doing now. So, I went from, you know, journalism and political science to healthcare. And, you know, it's something I could have never imagined. But I do love that I'm able to help people in this way now.

23:11 Joyce Lofstrom

That's great. And I know you still use some of your journalism in occasional sports articles that you write.

23:18 John-Mark Mallory

Yea, yeah, that's, I won't plug that. But yeah, that's something I do just for fun, and just kind of keep the writing skills sharp.

23:26 Joyce Lofstrom 

So, my last question is, what advice do you have for others who might be listening that have lost a sibling to cancer?

23:35 John-Mark Mallory

Yeah, it's; I don't think that there's a piece of advice that's a catch-all. Everybody is different. And it's such a difficult journey. And for some, it lasts years, you know, for us, it was, it was just under a year. It was so quick. 

But I do think of those people that have just been going through it; I would say the most important thing, the biggest piece of advice for me would be to just talk about whatever you're feeling, with, if it has to be with family, if it doesn't, anybody, just even a grief counselor. 

There are services that you can get grief counseling for free after a loved one dies. So, please don't think that there's a barrier with that. It's really important to talk to someone about whatever you're feeling because I had a lot of bad feelings when Max died. I didn't want to hold that in. I had very negative thoughts and very hate, you know, mean thoughts about the people that treated him and things.  And it was good for me to get that out rather than hold it in. 

I think that that's what's the most important is just to talk to someone when you're ready. And if you need additional support, there are groups out there, like I said. Check with local agents, local health care agencies, local doctors.  The grief counselor that I went to was the one who suggested to me the support groups that I ended up going to and getting a lot from. 

So, there are a lot of resources out there. I know it can be tough, but it's something that's really important. 

And I think that the other thing that's important is just to honor them in whatever way you feel fit, whether that's thinking of them every day, or having a picture of them by your bed or something like that. 

Or if it's something like we did, starting a foundation, trying to get the story out there so that people understand that you can help people in the future. I think that any way that you honor your loved one that you lost, your sibling, in your way, that's something positive, too, because it can really help you find some healing. I know it's a wound that never really fully heals, but it's something that can help you find some positivity or some healing in the process, in my opinion. 

And I think it's; it's hard to stay positive. And I don't think you always must stay positive if you've if you are feeling bad, but the most important thing is just that you express what you're feeling rather than holding it inside. Because once you're dealing with so much grief and loss and holding it in, just makes it worse. 

In my opinion, it's really important to talk about what you're feeling, especially in a situation like the loss of a sibling.

26:42 Joyce Lofstrom

That is great advice to end our discussion on, John-Mark. I think you've hit on some really important points, especially to talk about it and not hold in whatever it is that you're thinking about. 

I hope down the road, maybe next year at this time or sooner, depending on what's going on with the Foundation. But you can come back and tell us what's happened. 

So, thank you for being part of the podcast.

27:10 John-Mark Mallory

Definitely. Thank you so much for having me. Okay, I'll talk to you later. Love you, mom.

27:15 Joyce Lofstrom

Love you too, John-Mark.

27:16 John-Mark Mallory

Bye.

27:17 Joyce Lofstrom

Goodbye. 

Thanks so much for joining me today on Don't Give Up on Testicular Cancer from the Max Mallory Foundation. We have a website, and it's at maxmalloryfoundation.com, where you can learn more about testicular cancer, donate, and also send your ideas for guests on the podcast. And for spelling, Mallory is m-a-l-l-o-r-y.

Please join me next time for Don't Give up on Testicular Cancer.

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