A Musician’s Perspective on Surviving Testicular Cancer

Stephen Heaviside is a musician, writer, and adolescent and young adult - or A-Y-A - advocate. He's deeply passionate about helping to create community support, especially for those who've experienced challenging health and life situations. 

A testicular cancer survivor, Stephen is now the program coordinator with the Cactus Cancer Society, where he volunteered before joining the staff. He has been involved with the AYA community for about eight years. In addition, he has worked with and volunteered for several organizations, including Stupid Cancer and Elephant and Tea.

In the podcast, he shares his testicular cancer journey with insights about the people he met and lost as friends and the healing role of music in his life. Music continues as a focus for Stephen, which he describes during this episode of Don't Give Up on Testicular Cancer from the Max Mallory Foundation.

Find his music on Spotify at Stephen Heaviside.

Learn more about the Cactus Cancer Society. 

Transcript

A Musician's Perspective on Surviving Testicular Cancer
An interview with Stephen Heaviside

Intro:

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 Lofstrom

Hi, this is Joyce, and with me today is Steven Heaviside. He's a musician, a writer, and an adolescent and young adult, or A-Y-A advocate. He's deeply passionate about helping to create support in community, especially for those who have experienced challenging health and life challenges. He is a testicular cancer survivor, and he's now employed with the Cactus Cancer Society, where he is the program coordinator.

He also volunteered with that organization before joining their staff. He has been involved with the AYA community for about eight years and has worked with and volunteered for several other organizations, including Stupid Cancer and Elephants and Tea. So, he'll tell us more about that as well. You can follow him on Instagram and Twitter at Heaviside and on Facebook.

You can also find his music, which we will talk about later in the podcast. So, Stephen, thank you for being with us today. Welcome.

Stephen Heaviside

Yeah. I'm honored to be here with you. 
 

Joyce Lofstrom

I always like to start out by asking my guests to share their stories. Steven, just tell us a little bit about your testicular cancer journey.

What happened? Anything you want to share? 

Stephen Heaviside

Yeah. I have kind of a strange cancer origin story, and I didn't have any symptoms from my cancer. I had an injury that I suffered on the job, and I had dropped something on myself. And you know, as a kid who grew up playing little League and soccer, I'd taken a few shots to the groin before, and it hurts for a few minutes, and it goes away.

But I had dropped something, and it was hurting for days on end. I was just in absolute agony and had to. Wave the white flag and see a doctor about it. And when I went to the doctor, he took a look at things and said, yes, you do have a serious injury down here, but I'm going to actually set you up with blood work and an ultrasound because I see something there.

I don't remember. You know, some of the cancer memories get a little blurry sometimes on stuff. I don't remember if he used the words tumor or cancer, but I definitely got some concern in his voice. And then, I did the ultrasound, I did the blood work. I was referred to a urologist, and when I got the blood work back with the urologist, he said, yeah, this makes our decision easy.

It's cancer. So that meant I was going to have to remove that testicle. I had to have the orchiectomy, the surgery to remove it. And it was just one of those things where things kept, I felt like the unluckiest guy in the world at the time. It kept getting more serious, I thought because I had no symptoms.

They must have caught it really early. But when I had scans done after the surgery, it had already spread. So, at that point, I had to get an oncologist, and that's when I had to go through chemo, the BEP chemo, four rounds of that, which was pretty intense. But as my oncologist said, this will be the magic bullet.

And thankfully it was, and it did help with things. And I've been in remission for nine years now, thankfully. 

Joyce Lofstrom 

So, you didn't have to do the surgery because it had spread. That leads us to another treatment. 

Stephen Heaviside

No, that was the worry at the time that if this doesn't work, you're going to have to do the surgery.

I'd have that scar on my abdomen, and at the time things kept progressing, so I thought, you know what, like if this doesn't work, I'll have to do something else. It's just, it's felt like it kept going, it just kept getting more serious, and I just couldn't escape it for that time period. Because when you're in, in the midst of treatment, it just feels like you're stuck.

You just can't wait for it to be over. 

Joyce Lofstrom

Well, nine years to be in remission. That's wonderful. And I've read some of the articles that you've written, one that was in Elephants and Tea, maybe two of those, and that's a publication for young adults and adolescents with cancer. You talked about friendships that you had during your cancer journey, and I thought that was really well done.

Keeping friends and losing friends. Can you talk a little bit about that for us, about that article and just what you went through with friendships? 

Stephen Heaviside

Yeah, because I think especially for the AYA population, you know, the young adult thing, friendships are going to come and go naturally. I think that's going to happen.

People will go away for school, or they'll relocate for a job once they hit their twenties or thirties. So, it's kind of part of life that friendships will come and go. But I think the cancer experience makes it even more of a jarring experience because you're going through this really serious health crisis that some friends can't really relate to, so they don't know how to talk to you anymore.

And so, some friendships fade, and then some friendships really get strengthened. I always tell people it's not like I was making a list of, okay, well this person visited me in the hospital, and this person didn't, I wasn't doing that. I'm not a grudge-holder. But you would notice the people that really went out of their way to be sweet to you.

And since, especially during treatment, you know, I wasn't going to work. I wasn't really having this active social life. So, someone taking a half hour of their day to bring me a cupcake or in and out or something, I was like, yeah, they went out of their way to do this. What a sweet person. And it really stuck with me, and it made those friendships, it made me more grateful for the friendships than ever.

So even some of the friendships that kind of faded out in the cancer years, it was really balanced out by all the new friends I was making and the friends who were really there for me. 

Joyce Lofstrom 

I know in the discussion about friendships, you mentioned a couple that you knew that remained really close to you.

Tell us more about that. 

Stephen Heaviside

Well, he's doing comedy now, so he's not teaching anymore. As you know, Covid changed a lot of career paths. They're, they're not in Seattle now, but they're both wonderful people who took me to one of my infusions. We shared lollipops with the nurses.

One of those fun little memories in the midst of a tough time. And yeah, they were just really great friends. They flew down from Seattle for my, cancer-free party, which I didn't expect them to do it all. Another example of friends just kind of surprising you in these nice ways. He's the kind of friend - we have these marathon phone call sessions.

When we do catch up and catch up on each other's lives, I don't really do that anymore. I don't really talk on the phone a lot, but he's one of those people I will stay up till 1:00 a.m. talking to on the phone. 

Joyce Lofstrom

I remember when Max was in the hospital with chemo. He was there on Halloween, and he had several friends, all women, who came, and they went around the floor and did trick or treating, so that was really fun for him.

Stephen Heaviside

Yeah, it's kind of nice. I guess that's just the sweet-sour of life sometimes. You're going through this really heavy thing, but friends show up with desserts for me or make soup for me. It's like, that was a really sweet time. I wish someone would make soup for me this week or come by with a strawberry shortcake.

Joyce Lofstrom

Like a strawberry shortcake. Yes, I would have to say that strawberry shortcake with coffee would be great. What do you think was your biggest challenge during all of your cancer journey? 

Stephen Heaviside

I would say the biggest challenge of the whole cancer story, journey, whatever you want to call it, has been the survivorship and anxiety of things. I think when I was really going through stuff, there was a real endpoint. And I was just like, I just have to get to this. I just have to finish this race. I just have to finish chemo. I just have to get in remission. I just, I have this job to do here, but the job just kind of continues, and it's just the job of life.

So, I started having anxiety post-cancer that I didn't really know how to name it or what to do with it. It wasn't something I ever really experienced before cancer, but I just found myself really kind of getting anxious about things more than usual. It was this new thing I had to deal with. And it's been an ongoing process.

It's just talking to my doctor, talking to my oncologist about what I'm dealing with, and then, everybody has their own combination of things that works for them to heal from it and to deal with, and you know, therapy, medication, even just talking to friends, even just being open about stuff, it really helps.

And for me, music, music is one of my big things. That's one of my therapies. So, there have been struggles with anxiety, but I think I found a way to manage it mostly at this point. 

Joyce Lofstrom

Well, you just talked about your music, so that's a good segue to that topic. I know you are a singer, a performer, a composer, looks like from around 2005. So, tell us about your music. 

Stephen Heaviside

Yeah, yeah. That was when I first was putting myself out there and going to open mics and trying to book shows for myself. 

Joyce Lofstrom

You know, I've listened to some of your songs on Spotify.

Stephen Heaviside

Oh, thank you. I mean, I was always a kid that was always obsessed with music for whatever reason.

I just gravitated to it very early on. So, I've always had insomnia. Even when I was a toddler, my parents really struggled to get me to sleep. One of the things I can vividly remember doing is having my records that my dad had and just reading the lyrics and the liner notes. And that was like a strange comfort to get me to sleep somehow just like singing the songs to myself with having the lyrics there.

I was always really into music. I would write countdowns to my favorite song in like notepads in school and stuff. I was always just very curious about music and kind of obsessed with it. And when you're a kid, it's just like a fun thing you're into. And then, I think once you get to the teenage years, you kind of access all these feelings that you don't deal with when you're a kid, and you kind of think, oh, well this artist is great to listen to when I'm actually feeling depressed.

This artist is great when I'm kind of stressed out. And then that's when I really got into wanting to play and write myself. I wanted to, I had to have a guitar. I had to, you know, be like the heroes I was looking up to. And that's when I really started writing. I. And at first, you're trying to write like the bands you like.

I think everyone kind of does that. You kind of sing the way your favorite singer sings until you find your own voice. And then once I, you know, got to my twenties, and it was like, yeah, let's put ourselves out there. Let's play places. Let's go to open mics and air out these songs about breakups and all this early twenties stuff.

But now, it's been really strange because even that's something that the cancer part of my life has affected because once I was going through that, I was not always a hundred percent writing autobiographically, but I would be writing about myself to some extent. And then it felt very heavy to write about myself all of a sudden.

There was part of me that thought of just giving up music altogether because I just thought being on stage would feel much different. And it did feel different when I did do it. I just thought people would know this stuff that happened to me, and I'll be this guy that people will be whispering, oh, you know what happened to him, right?

Stephen Heaviside

And the song is about this. And I just thought, oh, that feels so dark and heavy. I don't know if I want to subject myself or to a crowd to that. I don't know if that's going to be helpful for me or anyone. But yeah, I think in recent years I've really kind of cycled through a lot of that, and I feel I'm feeling much better about sharing songs again. And I think it just takes time. 

Joyce Lofstrom

And yeah, I think it really just takes time. It sounded like an acoustic guitar, but I'm wondering do you play acoustic and electric? 

Stephen Heaviside

Yeah, I play both. 

Joyce Lofstrom 

I know about your music, I listened to several, as I said, and they were really very, very, Beautiful. Very calming. It was very nice, 

Stephen Heaviside

You know, especially some of the earlier stuff is more singer-songwriter stuff and even some of the more recent songs kind of head in that direction.

And then, you don't have to worry about a band that way when you just have yourself on the acoustic guitar. 

Joyce Lofstrom

One thing I want to mention, again, from some of your articles, it's about your experience in losing a friend, a woman who had cancer, in one of the groups that you belong to. I don't talk a lot about death in my podcast, but it's a realistic topic.

Can you, uh, share that story with us? 

Stephen Heaviside

Yeah. Yeah. Because I think the phrase I used in that article was when I heard she had passed, I felt stupid. I, all of a sudden, just felt really naive about the whole thing because it was. You know, when you're younger, you think of death, and a lot of things in life, not just death, but a lot of things just feel very far away and abstract.

Like, it's not a thing you're going to have to deal with for a long time, you know. And you think there's going to be this natural life cycle to things. I don't like hearing about anyone passing ever, but. There's part of you that's like, well, you know that that's a celebrity or that grandparent, they were in their eighties or nineties.

That's the natural cycle of things. But when you're in the cancer community, you make friends with people that are in their twenties, thirties, forties, and they're suddenly gone, and it's like you, you almost forget that can happen. Sometimes you forget that they're not. A lot of us won't make it to 80 or 90.

The phrase I used was I felt stupid all of a sudden. I obviously felt grateful to have known her at all and anyone I've met in the community, but I think it is a very jarring experience because suddenly, you realize how life isn't as linear or maybe as long as you thought it was going to be when you're young.

There are so many different things that can happen to people, unfortunately. I don't know if I've ever come to an acceptance of it, you know, there's survivor's guilt sometimes. When I hear about folks, if I hear about someone, especially if they had my cancer and I hear of them passing, I almost feel it's unfair for me to even still be around when some people don't get to stick around.

It's a real double-edged sword because you make great friends, you meet people that you can relate to, and talk about certain things you probably can't talk about with other folks But there is kind of that spectrum in the background of, you know, some people are really sick and some people aren't always going to be around to talk to.

Joyce Lofstrom

Well, I wouldn't really worry too much about that right now. And, you know, it's your journey and how you feel, and everybody's disease is quite different. But I do understand the feeling that you must have had. When Max died, we were just stunned. We were not expecting it. Everyone told us he would be fine.

He was going through high-dose chemo. I mean, his cancer was all gone except for in his brain, and he had a brain bleed. And, you know, you are never prepared for anyone to die. But I appreciate that you at least shared your feelings about your friend dying. It's part of the journey. 

Stephen Heaviside

Yeah. And I think that's part of the thing I've come to more of a reckoning with that I feel better about with, with music as well. I was so scared of talking about certain things because I didn't want to scare people. I didn't want to scare my parents or my friends because I didn't want them to really think, he was really going through it. 

But at the same time, it's just the honesty of it. And then sometimes, if you do air out some of those thoughts, somewhere someone listens to that and says, oh, okay, this actually helped me out a little bit that he said that out loud. So as dark as some of the stuff is, it might really help someone, especially with music. I think of some of my favorite writers who, you know, they were writing about their lives or their divorce or something that was really traumatic for them, and they aired it out.

And even if I don't relate a hundred percent, there's something in that feeling of someone being vulnerable. That really just strikes a chord with people. 

Joyce Lofstrom

So now, I want to have you tell us about how you decided to write a song. You just sit down one day and like, oh, you know, I have this idea and start playing, and then you have it. Share 

anything you'd like to about that. I

Stephen Heaviside

I don't have a tried and true method necessarily. There are usually a few different things I do. A lot of times, it's just sitting with my guitar. And you know, even just while I'm watching TV and I'm bored, and I'll just try a different tuning or something, and I'll just hit on a progression, or I'll just hit on something and be like, oh, that's something.

Let me record that really quickly and come back to it. And then usually on the flip side, I'll have a conversation with a friend, and there'll be a funny phrase or. Something I see while I'm driving that I think, oh, that's a really poetic phrase. I'm going to put that in my iPhone notes, or I'm going to write that down.

And so, kind of on both ends, I'll just file away different lyrical things or different ideas. And then, on the other side, I'll have musical stuff, and at some point, I'll kind of put the puzzle pieces together of like, okay, these words kind of go with the feeling on this little guitar part I have. And then that's when I kind of merge the two together.

I don't think every songwriter works that way, but that's how I've always kind of done it. 

Joyce Lofstrom

I also read that you love coffee and that you've been a barista in California. I love coffee. I like bold, dark black coffee. I drink a lot of it. So why don't you share some of your experiences with good coffee and what kind of coffee do you like?

Stephen Heaviside

Yeah, I'm a black coffee guy, so if I'm getting coffee somewhere, it's usually I'm just trying their coffee or an Americano. I don't want any milk or sugar in there. Usually. I'm not adverse to it, if someone tells me a place has a really good cappuccino, I'll try it. I'll try the seasonal latte at a place.

But yeah, just generally I want to taste the coffee, so I just want to taste just a strong, strong coffee in the morning - it is the ideal thing. There's something about the comfort of a good coffee because one of my routines, when I would have my follow-ups, is, before I texted anyone in the news or anything, I would go find a new coffee place to go. I would just treat myself to a coffee, just sit with my thoughts a little bit after the follow-up, whether the news was going to be good or bad.

I would just have that time to myself before I reached out to anybody. And you know, sometimes you go to a new place and go, wow, this is a good coffee. I should come back here. And sometimes it’s just like, oh, I kind of just want the comfort of the thing I'm used to waking up to every morning.

It's like even if there is a flavorful, you know, sometimes you go to a fancy place, and they'll have, oh, we got this from Ethiopia. It's got some hints of blueberries in it. And it's like, yeah, that's nice, but I actually don't want the blueberries, I just want the coffee. So yeah, it's like you appreciate the different things, but sometimes you just want the comfort you're used to. For

a lot of people at Starbucks or whatever their neighborhood coffee shop is, 

Joyce Lofstrom

Well, before I keep going on about coffee, I'll go on now to your career. Tell us a little bit about your new position at the Cactus Cancer Society. 

Stephen Heaviside

Yeah. I'm a program coordinator now for Cactus, and so I'm the new voice in there although 

part of the reason I accepted the job is because I've done stuff with them before and really believe in that organization a lot. It's a perfect fit because it allows for a lot of expression through creativity. They do a lot of the workshops geared towards journaling and writing workshops.

So a perfect fit. And then I'll be helping out with hopefully having some new ideas for programs and facilitating some of the programs that already exist that are already great. 

But yeah, I'm really excited about it. I think it's like I said, a perfect fit. 

Joyce Lofstrom

You know, back before Covid, the Cactus Cancer Society, when it was Lacuna Loft, had an in-person fundraiser that my partner Bill and I went to here in Chicago.

And it was nice to meet Mallory, the founder, and other people, and her father was there too. It's such a great organization, so I'm glad to know that you're part of it. We'll look for some of the things you want to do when you start working with them on different ideas for programming.

So, I'm going to go back to music, but all the songs I know you've written, you mentioned. So what’s next for you - personally or professionally?

Stephen Heaviside

Yeah, no, that's a good question. So, I have the job with the Cactus Cancer Society, so I'm excited about that. And yeah, going back to the music thing, when I was in treatment, I did, and after my diagnosis, I was writing, I couldn't help but write about it.

There was part of me that thought, well, this is what you wish for when you're kind of going through these lulls, like, hey, nothing's interesting is happening in my life. I don't have good material to write about. 

It's like, well, be careful what you wish for. I had all this material about that stuff, but it did seem too dark, and it was so close to the bone that I felt weird about sharing it.

And one of the things now that I'm coming up on the 10th year of my diagnosis, I've been thinking about it a lot. And I am a sucker for sentimentality or a sucker for novelty, I guess. So, I always like it when my favorite bands or artists do the whole, hey, it's the 20th anniversary of when we put this record out.

We're putting out a new version of it with some tracks we never released before, or we're going on tour and playing it front to back. I love it when people do that stuff. So, in my head I've been thinking about it, okay, 10 years is coming up. I think you should share those songs with the world. I think you should share the cancer songs and not be afraid of it.

Joyce Lofstrom

You have enough for an album, right? Twelve to 14 songs? 

Stephen Heaviside

Yeah. Oh, it, it would be like several albums. Maybe I would have to edit some of it. Maybe. I don't know if some of them might not be on the cutting room floor. There’s definitely enough material for an album. Just of the cancer songs, quote unquote. 

Joyce Lofstrom

Twelve songs, roughly. I'm back in the sixties, so maybe it's different now.

Stephen Heaviside

I mean, this one would have like, I want to say at least 14 or so, and that's even x-ing out some of the ones I didn't feel great about. So, we'll see. There's no, there's no record label telling me what I can and can't do, so it's up to me. So, we'll see.

Joyce Lofstrom

Before I ask you my final question, would you give us how to reach you as a writer, composer, musician, and then also the Cactus Cancer Society? 

Stephen Heaviside

Yeah, so cactuscancer.org. You can look up all the upcoming programs and more information there. 

And then, just look up my name on Spotify and Apple Music, and I'll pop right up in the search engine there.

Joyce Lofstrom

My last question, I think it's a good one for you as a musician, what song, when you hear it on the radio or you play it, that you just have to sing along to it? 

Stephen Heaviside

Oh man, there's so many. My songs don't count, and I also don't sing along to my own songs. I change it if one of my own songs comes on.

No musician's a huge fan of hearing their own voice. I'm a huge Springsteen guy, so I want to say probably a Bruce song, but the one I will use is - I just loved the song when I was a little kid, whenever I first heard it. And even as a musician or growing up now, I think it's a perfectly written pop song.

I wouldn't change anything. I still sing along if it comes on is Jessie's Girl by Rick Springfield. Something about it and maybe just because it reminds me of like, hearing it as a kid, it just unlocks some innocent, fun feeling. But if that song comes on, I’ll sing along with Karaoke to Jesse's Girl any day. 

Joyce Lofstrom

Well, I have a quick Rick Springfield story. This is several years ago, but I was visiting my college roommate in southern Missouri, and Rick Springfield happened to be in town for a concert at one of the restaurants there in Cape Girardeau. So we went, it was really fun listening to him

sing. It was a fundraiser for a young girl with cancer, you know, he was there. Everybody had a wonderful time. 

Stephen Heaviside

Yeah, he just put out something recently. I came across it, and he also still looks great. He hasn't aged since 1988. Better than most people on the planet.

Joyce Lofstrom

Well, I really appreciate your time, Stephen, and sharing your story and everything you're doing now and your musical talents and so forth. I hope you can come back maybe around your 10th when you’ve had that anniversary with your new music and give us an update.

Stephen Heaviside

Thank you, and thanks for all you're doing to raise cancer awareness and help young adults. It's an honor to be on the podcast with you. 

Closing

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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