Scott

Transcript:

Joel

Hey there. It's Joel Alsup, and this is “St. Jude Storied Lives.” Now, this is where you can hear about what life has been like for people who were patients at St. Jude Children's Research Hospital after their treatment is over. I was one of those patients myself when I was a kid, and now I get to share the stories of St. Jude patients as part of my job.

So, St. Jude has been around for more than 60 years. That means there are a lot of people who were patients once. Cancer wasn't the end of their story. They've still got a lot of stories to tell. Nobody has more of them than my friend Scott.

Scott

I think for me, and this sounds weird, I think I became more outgoing than I probably was. I was certainly more of an introvert before my cancer. But once you're, you know, you have a robot leg and a bald head, you were kind of, you know, everybody stares at you anyway.

Joel

Outgoing doesn't begin to describe Scott. And you're about to find that out. I've known him for nearly 25 years, and we've actually worked together for two decades at ALSAC. And like me, Scott had osteosarcoma when he was a kid. Now, Scott was diagnosed when he was just 15. He was a freshman in high school. And this was back in 1990.

Scott

And my ankle was bothering me. So, I started wearing an ankle brace every day, like I'd come home and I'd soak my ankle in ice and then I'd put an ankle brace on in the morning and go back and didn't think anything of it. So that was probably two months of me doing that, maybe even longer. And then finally my mom was like, Listen, we should, you know, get it looked at.

So that was May 1st of 1990. We went to the local orthopedic guy there, and he put me in a room, Dad was in the lobby and they did an X-ray. And I was thinking, well, maybe I'll get a cast and that gets you out of class early, and people carry your books. It's great. And I remember the doctor coming in and he said, I need you to go get your dad.

And I remember the look on his face, knowing well that ain’t good. And so he came back in once my dad came in and said, you know, put the X-ray up and there's a tumor. And we've already called St. Jude and you've got a 9 am down there. I think it's bone cancer. And that was, you know, what I remember. I was listening to Young MC on my tape, on my Walkman, and that was what I remember. It’s weird what you remember. But that was what I was listening to that day, waiting on the doctor to come in.

Joel

Yeah. And so, I mean, being a little bit older when you hear St. Jude and I don't know if you had any knowledge of it at that point. Were you starting to suspect something big? I mean, did the problem become larger in your mind?

Scott

Yeah, I mean, it's funny because, you know, I was 15 years old, so you're supposed to – obviously I knew cancer and all of those things. I think for me, you know, had I heard of St. Jude? I'm sure I had, it wasn't anything I didn't know about. But I don't know that I could have told you exactly what they did or any of that.

I remember even walking in the doors of St. Jude that May 2nd and seeing, you know, in the original star-shaped building, walking up to the desk and seeing a little bald girl in the lobby and thinking, Oh, that poor kid’s, sick. I'm, you know, just this little thing on my ankle. And, you know, three or four weeks later, I looked just like her.

But I think what I remember most was that, you know, I wasn't that scared. I don't know why. I just wasn't. But, you know, years later, talking to my parents, they didn't sleep all night, and as a parent, now I get that. You worry about your kids and you don't want anything to go wrong with them, and you want to do whatever you can to make them feel better. And when you can't, you feel helpless. And I don't remember having the fear that they did. I don't know why, but I didn't.

Joel

That's very much what I've taken off you from the moment I met you. There's not a weight there. And that's a beautiful thing to see, and I think a unique attitude to approach it with it. As you walked into St. Jude and began to realize maybe the gravity of the situation, did any of that take over or did you just always feel like, well, this is what I got to do, I'm going to get through it?

Scott

Yeah, you know, I think part of it, I've always said it was so matter of fact, like, okay, you've got osteosarcoma and, you know, they did all the workups on you and they did a biopsy, they put a port-a-cath in. And so that made it more real. But even through the biopsy, I was like, well, maybe it's not it. I mean, they could be mistaken. But no, they came back and they said, here's what we're going to do. You've got, you know, 30 weeks of chemo or 36 weeks, whatever it was, I can't remember exactly. I don't think it was right off the top they said they were taking my leg. I feel like that was a couple of weeks later.

But even when we got to that point, you know, it was a little bit of a jolt, but it was also like, but you can do whatever you want. We're going to get you a, you know, a bionic leg, if you will, to still play basketball. That was a big thing for me, still wanting to do sports and everything I'd grown up doing.

But I think I was at peace. You know, it was funny. There was one point in time where I wasn't feeling well. I was running a fever. It was after getting chemo and my dad was like, I’m going to have to call St. Jude, but I wanted to do something like, I can't remember if I wanted to go to a high school football game. There was something I wanted to do and I was like, No, no, no, I'll be fine, don't call. They're going to make me come in. And he was like, But you could die.

Like, you understand, Like your counts are low and, you know, I know I’m supposed to know that, but as that teenage boy you also have that like, But I want to go live my life and do what I want to do. And it was just I remember, not that he slapped my face, but it felt like that.

It was just like, you know, when your dad says that because you can see the fear in his eyes and you don't always think of it from that perspective, you think of it as, Man, come on, let me go the game Friday night. I'll be fine. And it's just a little fever. In their world, in the parent world, and in real life, that's not just what it is. I mean, it's low counts and you could have an infection which could be bad.

Joel

Now, how did you manage it for that time that you were on treatment? Were you in school, were you doing school through St. Jude? How did that that time go for you?

Scott

Yeah, I was in school. Like I said, I was into my sophomore year. We had a teacher at St. Jude that would come by. My teacher would send work from Germantown High School where I went and I think we saw the St. Jude teacher once or twice, but I think the longest inpatient stay I had was like eight days. It was not like I was missing a month at a time or whatever. So I kept up. I ended up having a repeat, I think it was Algebra 1 or something, which I probably would've had to do it anyway.

Joel

Oh yeah, I did anyway, just because.

Scott

We’ll blame it on the chemo, that sounds great. But other than that, yeah, I was lucky everything else was able to get done.

Joel

And I know you said too as you approach that time of amputation, you kind of just rolled with it. Was there any shock factor, though, when you wake up that first time and see that your leg below the knee is no longer there?

Scott

Yeah, you know when you wake up you've got a – they’ve casted you above your knee so you can't bend your knee. I remember taking a mylar balloon that was in the room because I wanted to see what the end of the cast looked like. I held the mylar balloon up to the end of it to look, and there was a little latch there where the fake foot attaches to you, if you will.

And I was blessed also that the only – at that point in time there was only one physical therapist at St. Jude, and she was on vacation, so there was nobody to come in and make me get out of bed. And so, I went like a couple of days before she showed up and she was not happy that somebody had not gotten me out of bed yet.

So, I do remember I was supposed to get up apparently the first day after surgery, and it was a couple, three days later before she showed up, and she was awesome. I mean, looking back, I needed her brashness and her like, Hey, teenage boy, you can be as smart aleck you want to be, but you got to get up and do this if you're going to, you know, be who you want to be.

Joel

How was that? How was the physical therapy and learning how to use the prosthetic? Because, I mean, it's one thing to say, yeah, I've got a bionic leg now. There's a lot that goes into that to being able to walk on it.

Scott

You know, it's funny, I think the weirdest feeling I had just to kind of finish that thought is when they cut that cast off. So, they had casted you after surgery and then a week, ten days later or whatever it was, they cut it off and that was the first time I had no weight below my knee, like it was the first time I really felt like, I don't know how to describe it, just a weird feeling of not having the rest of your leg.

But yeah, you start working on, you know, the parallel bars and you're still on crutches for weeks and weeks and weeks. And then I remember I got to a cane by – about this time it was like October of ‘90, and I had my leg amputated June 27th. And so, I remember it was before Thanksgiving, one day at school, we were getting ready to go to lunch and I was like – feels like I can do this without the cane.

And so, I remember walking to lunch without a cane and, you know, nobody really noticed it but me. But I was kind of like, that was kind of bad ass. Like, I did it, you know, you were pumped about it.

Joel

And, you know, how did it feel as you're going back, do you feel like you're especially being as far along in school as you were, did you feel like your friends viewed you different or were they ready to just welcome back their buddy that they missed for that time frame that you were gone?

Scott

You certainly are a center of attention. You're walking around with a bald head or a baseball cap on all the time. I think for me and this sounds weird. I think I became more outgoing than I probably was. I was certainly more of an introvert before my cancer. But once you have a robot leg and a bald head, everybody stares at you anyway.

I mean, I got voted friendliest my senior year. Well, it turns out the guy won three categories and he couldn't win all three. And so, I was the default friendliest. But you take what you can get Joel.  

Joel

I think you're a pretty friendly guy. And one of the fun things that I have a difficult time explaining this to people, maybe we can help explain it together. That comes along after an amputation is phantom pain. It is because whenever that limb is removed, your nerves don't know it's not there, and they keep firing signals. It feels wonderful.

Scott

Right. No, it's funny. Gosh, it's been 33 years for me. But yeah, no. Right off the top, you know, that's what I remember most. It wasn't so much pain from surgery. It was literally the phantom pains of your foot itching, burning, or just feeling like it was being snapped off. You know, phantom pains that you couldn't scratch your itchy toes or whatever.

And even today, I mean, I probably get 10 to 12 phantom pains a year. But it's awful. There’s two things that happen. One, I'll get a phantom pain where it feels like somebody stabs me in my foot. I'm like, Oh my God. I'm just like, you know, you just kind of freeze and you can't move and you're in pain. You can't tell anybody because you look weird, because you're kind of stiff as a board.

But the other one that's got me in the last couple of years is about once or twice a year, I get a tingly stump, where my stump is tingling and I can't sleep. There’s nothing you can do. And you know it's all in your head, but now you're thinking about it, because it started. There's no on or off button, so you don't sleep well because your stump itches – tingling, has a tingle to it. I don't know if you get that, but it does happen to me a lot, you know, two or three times a year. I don't know if that's old age or what.

Joel

I don't know either, because we're around the same age, and it does feel, it is funny because I'm like you. Several times a year I'll have that phantom pain. And to this day, I'm now almost 35 years out from amputation. It still feels like my arm is there no matter what, like it’s right there.

 

Scott

Same here. Yeah, it's one of those things where you know, your toes, still every once in a while, you feel your toes just like they felt back then.

 

Joel

So, you get back to school, finish up high school, head for college. What were your goals as you started college? What did you want to do? What did you want to be?

Scott

When I started college, I was going to be a physical therapist. You know, like I said, Lola who was here at the time, my physical therapist, made a really big impression on me. And I really like, you know, how she taught me to take the baby steps and then work on the balance beam and all the things we did to get back to normal.

And I really thought that was the route I was going to go until I got into Biology 101. And that dream died relatively quickly. But I ended up moving over to public relations, became a PR major, and that was what I graduated with. And then luckily I got hired with ALSAC St. Jude, the fundraising and awareness organization, right out of the college. So that was, you know, 25 years ago now.

 

Joel

So what's it been like this 25 years being back and working for the fundraising and awareness organization for the hospital that saved your life?

Scott

You know, it's everything you hope it would be. I’ve had so much success at different events and money that that was raised because of it. And then, you know, I think the neater thing for me was meeting some of these patients that are osteo patients or even if they're not. But usually it's osteo I can connect with best obviously.

And building that friendship and being kind of a mentor for them. And that's certainly been a big part of it. But yeah, there's nothing like waking up in the morning and knowing you're working with the place that saved your life. I mean, even on those days where you've worked long hours or you had kind of a bad day, because something didn't go right or whatever, you know why you're doing it.

Joel

Tell us about your job now. I think you've got a pretty cool job now. What aspect of fundraising do you work in now?

Scott

I'm on the music and audio engagement team, and so for 30 years we've worked within radio. So, we work with, used to be country radio, then we did Spanish radio and added urban and gospel AC and now we even have St. Jude Rocks, which is mainly classic rock radio. We work with a lot of the artist teams throughout the different sides of it, so helping engage the artists, getting them involved and figuring out ways they can help St. Jude by using their voice or certainly their social media.

I love what I do. I get I get to work with radio deejays that have been involved for, you know, sometimes even back before I was a patient, they started raising money for us. And so, it's kind of cool to meet people that were raising money when you were, you know, just starting out as a patient. Now they're, you know, a colleague or somebody you help raise money even today.

Joel

And we’ll shift gears a little bit. You've got three kids, your wife, Leigh, who you've been with for a long time. How did you meet her? Did she know about the cancer before you guys had met? Did you feel any responsibility to have to tell her, or any explanation you had to give when you got started dating?

Scott

Well, we're old high school sweethearts. We met pre-cancer, so we had started dating about three months before we found the tumor. By the time I found the tumor, we were, you know, going out or dating. And so, yeah, she managed it very well. She saw me, you know, certainly at my worst and my sickest.

And we got married, you know, 25 years ago this year. In fact, we got married and started with ALSAC all in about a ten-day window there. And then my oldest, Caroline, is 22 now and she's going to be a nurse. And so maybe one day she'll work here. I mean, she's doing pediatrics right now.

And my middle one, Ashlyn is majoring in business, and she's figuring it out. She’s at the University of Memphis. And my son Kevin turns 18 next week. So, I'm about not to have any kids. They're going to be all adults technically at that point. And so, yeah, it's amazing, man. It's kind of like, you know, I heard a patient parent the other day say, you know, not only did they save one life, they saved multiple now. And certainly they saved mine, and now they've got three other lives that are benefited because of it.

Joel

It's amazing. And what did it mean to you for her to be so young and for you to go through such a life changing event, what did it mean to you that she stuck by your side through that whole thing?

 

Scott

I can't imagine from her perspective. I mean, she just wants to be a high school kid and, you know, grow up and have fun and do all the normal things and have her boyfriend with her. And, you know, for a better part of a year there I wasn't. I mean, you know, if I'd go to a football game, I don't know that I'd last the whole time.

I'd get tired or want to go home. But I think that's where our relationship came from, and we went through a lot of things early on. And, you know, she was supportive and was with me the whole time. And I think we both grew and that helped long term with our love and everything else.

 

Joel

I think you're very much like me on this. But as far as the physical limitations that you've had to have after that amputation, other than me asking you to help me put on my headphones in here, there's not a lot I don't think about I can't do. How do you feel about that? Is there any point in the day where you’re like, Oh, I don't know about this?

Scott

It's funny you ask that question because about right around the first of this month, I'd gotten a bunch of holes in my leg and it suctions on.

Joel

The prosthetic leg.

Scott

Yes thank you for clarifying – the prosthetic leg. It got a bunch of holes, and I really couldn't walk very well. It was not staying on. It'd be like every step I took, it was like trying to fall off. And so long story short, I had to get leg parts. But it took a week and a half before they came in. And so there were a lot of things – I was taking elevators instead of taking stairs, or I usually go for a walk every night. I couldn't go on a walk. Just walking from the parking garage to my desk was quite the challenge. And so it's very rare that I have that limitation. But that was certainly, you know, just recent just because – and it happens every now and then, but this was probably the worst it’s been because it all happened and I wasn't ready for it. So I didn't have any backup parts and all of that.

When you are an amputee and your leg’s not functioning right, it is a big deal. Like it's everything you want to do, you're limited by. But you overcome it. Like you said, you know, a lot of times I even rolled my chair around a little bit around my desk, like I'd sit in my little rolly chair and I'd roll so I wouldn't have to take the extra steps. And that's not me normally. But, you know, you do what you have to.

Joel

In addition to the physical adaptations that St. Jude helped you with, do you feel like mentally they prepared you for coming back and living this life and having the outlook that you do now?

Scott

Yeah, you know, early on, after I'd learned to walk and I was trying to learn to play basketball again, I think I'd maybe just wrapped up right before I wrapped up treatment. The prosthetic place that St. Jude uses, the guy that was my first prostheses maker, he was an amputee. He had lost his in a motorcycle accident.

But I told him I was like, Hey, look, man, I'm still having trouble trying to run. And part of that was mental. Like, when you're walking, it's one thing, but when you're running and you have to throw that leg out and your brain has to know that there's going to be a foot there when it touches, I mean it sounds weird. But like just a mental aspect to getting over how to really go into a big sprint. And so, he took me out to a baseball field and we practiced sprinting. It really was what I needed. It was somebody that had a prosthetic just like mine, and we could go out and he just kind of helped me get over the mental side of full on sprinting, if you will, and running.

And so that it wasn't something I was worried about. It didn't come natural. It just felt weird. And now I have no problem at all with it. But back then, it was a big deal. Like, it was like, all right, well, I don't trust it to be there when I when I go to really take off running.

 

Joel

It really is amazing to see because if you all met Scott, you would, for the most part, you're not going to have any idea he has one leg. I was giving someone a tour of St. Jude several years ago. We had an ALSAC employee with us and she'd been working here for several years. And I said something about Scott having one leg and she's like, Scott has one leg?

So, she had known you for years and it was something she didn't see. I sometimes take that as a compliment. How do you feel when people don't notice that about you?

 

Scott

Yeah, it's funny because every time I do tell my story, I end up rolling up my pants leg and showing them because, yeah, I make the joke like, I don't want you to think – because I walk normal. I'm pretty proud of myself on that. I'm proud of how well my prosthetic’s made and how well I wear it.

But, it's funny, I always don't lead with that. If I meet a new employee, that's usually not something I tell them in the first, you know, day or two I know them. Like, Hey, by the way, I'm an old patient. At some point it'll come up. But you know, not that I wouldn't. I don't want to be like the guy that leads with his patient story every time.

But yeah, no, it's been plenty of times where somebody found out months or even a year later that I had a prosthetic leg who works, you know, here at ALSAC or whatever. And they're like, I had no idea. And I'm like, Oh, sorry, I didn't know you didn't know.

Joel

And obviously, being here, you know, at ALSAC for 25 years, being a patient several years before that. Any favorite moments or stories that you want to share with us before we wrap up here?

 

Scott

Well, I got to be careful what stories I share openly. But no, look, I've met some amazing people.

One of my one of my go-to’s is I was at a fundraising thing with a group of ladies, that fundraise for St. Jude for decades. They were a little bit older than me, maybe quite a bit older than me. But anyway, I was at their state luncheon one time and we were at round tables all around the room, and it was like their state banquet. And I was sitting next to a lady, and she was just telling me about this lady at the other table, how much she didn't like her. So, I was like, Well, man, if you didn't really like her, you ought to throw a roll at her. And before I could finish thinking there was no way she would do that, she picked it up, she beans this lady from across the room. She was like, Hey, Beatrice, good to see you. And I'm just in shock. I'm like, Oh my gosh.

So, yeah, there's plenty of stories where you're at fundraising events. And there was one time I caught a piece of charcoal in the head, and I burned my forehead. And then while I was doing that, I ended up ruining some of the eggs I was cooking for breakfast for the trail ride people that I was there to help. And the guy was yelling at me while my forehead is literally on fire. So I wasn't invited back, I don't think, for that reason because I ruined the eggs.

But yeah, a lot of it's life experiences and I love what I do and I love meeting people. I love being around people. And I'm usually here Monday through Thursday. I like being in the office. I like seeing people. It’s just me. I don't like being in a house all by myself on a Zoom call if I can help it.

Joel

Well, let me speak for everyone when I say my day is always made better when I see you. You're truly an inspiration to me. I love that we can have fun together and enjoy this time together. I'm grateful to St. Jude for giving us this moment and this time together.

And just a last thing to wrap up with. What has St. Jude meant to you and your life?

Scott

I mean, it is part of my life. There’s not a part of my life that St. Jude doesn't have a factor in. I mean, you know, even though I was 15 when I was diagnosed and, you know, it's given me, you know, a career, it's given me a lot of outlook of, you know, you beat cancer and you can do anything you want to do.

You went through some really rough times and sick days and now, you know, enjoy every day that you feel great. And, you know, that's kind of what it does for me. It means hope. You know, I remember, like I said I never had a feeling of despair or, oh, my gosh, I'm never going to make it.

I was blessed that my cancer didn't spread and all the other things that can happen. I think it’s just a – and not to sound cheesy – I think it's a thing of hope and just feeling blessed and excited about, you know, helping the next generation of unfortunate kids that are being diagnosed with cancer and coming through.

Joel

Scott, I'm so proud that you're a fellow osteosarcoma patient like me, that you're a fellow coworker. But most of all, I'm proud that you're my friend. Thank you so much for taking time to share your story and your experiences with us today.

Scott

Well, man, Joel, it's always good to spend time with you, and you're a hero of mine. And I've told you that before. Anybody that, you know – I may have lost a leg, you lost an arm, but we’ve both overcome so many things. But it's always cool to see you doing whatever you want to do, however you want to do it. And it always inspires me as well. So, thank you.

Joel

Thank you, Scott. You're the best.

So, like me, Scott was a patient a long time ago, and the St. Jude campus is a lot different now than it was back then. Now there are more buildings for research and housing facilities for patients and families, and there have been plenty of changes in treatment. These are all good things and that's all because of the generous support of donors. You can give to St. Jude online at stjude.org or click the link in the episode description.

This podcast is a production of ALSAC, the fundraising and awareness organization for St. Jude Children's Research Hospital. It's recorded by Andres Garcia and Nathan Black. It's produced by Geoffrey Redick. It's edited by Grace Korzekwa Evans. The music production is by Kazimir Boyle, and Louis Graham is the executive producer. I'm Joel Alsup. Thanks for listening and join us next time.

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