Don’t Give Up on Testicular Cancer

Three Kids, a Musical and a Book - After Testicular Cancer - Episode #14

January 24, 2021 The Max Mallory Foundation - Joyce Lofstrom host Season 1 Episode 14
Don’t Give Up on Testicular Cancer
Three Kids, a Musical and a Book - After Testicular Cancer - Episode #14
Show Notes Transcript

Tom Willner wrote a musical during his chemo treatment for testicular cancer. He banked sperm, and his wife was pregnant with their first child at the same time. Now, some 20 years later, he's written a book and continues to share his experiences as a patient through a company he co-founded to bring his story to others. Learn more in Episode #14 - Don't Give Up on Testicular Cancer from the Max Mallory Foundation

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Three Kids, a Musical and a Book – After Testicular Cancer

SUMMARY KEYWORDS

testicular cancer, cancer survivor, musical, Tom Willner, Joyce Lofstrom, Max Mallory Foundation, Don’t Give Up on Testicular Cancer,  
 

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

 

Hi, this is Joyce, and with me, today for our podcast is Tom Willner. Tom is a testicular cancer survivor. He's also a very creative man with lots of interesting things he's going to be able to tell us about along his journey. So, Tom, thanks for being here.

 

00:55 Tom Willner

My pleasure. Thank you, Joyce.

 

00:58 Joyce Lofstrom

So, I always like to start and just ask our guests to explain and talk about their individual cancer journey. What happened, when - anything you would like to share?

 

01:09 Joyce Lofstrom

Sure, yeah…Well, this is going to give away my age a little bit here. But I was diagnosed with testicular cancer last century. But yeah, so it was 1999. 

 

And right before it happened, you know, life was good. My wife and I were DINKS, you know, dual-income, no kids. We would travel, worked hard. We were talking about starting a family. And then one day, I discovered a lump. 

 

And, you know, I, I was kind of in denial. I said, Yeah, I'll set something up.”

 

And after a few days, when I didn't, my wife set something up for me with a urologist. And it turned out after I got the biopsy that it was testicular cancer. I had some suspect masses around in my abdomen. 

 

So, we decided to go kind of aggressive. I was 30 years old, actually; it was right around my birthday, my 30th birthday that I discovered this. We decided to do the retroperitoneal lymph node dissection, RPLND, knowing that you know, there's some side effects, potential side effects from that, that we might not be able to have children naturally, you know, some fertility issues.

I made several deposits at a fertility clinic and then had the surgery. And up until that point, that was probably my worst, you know, or I should say, maybe my most difficult experience I've been through in my life. 

 

When it was done about a week, you know, a little less than a week in the hospital, the biopsies from those masses came back clean, and I thought I was done. So, I started to go back to my normal life and did follow-up screenings. 

 

But, you know, I definitely had changed. I did find out I had lack of emission from the surgery, a side effect, so I could no longer you know, conceive naturally, conceive children naturally. 

 

And I kind of had an identity crisis, you know, sort of about my manhood. I grew this big Grizzly Adams beard for the first time in my life. I had long hair at the time, and I ended up cutting it off because I could cut off a large enough piece that I could donate it to (Locks of Love), you know, kids who were going through chemotherapy and stuff and be able to you know, try to look normal. So, I did that and at the same time, I actually bleached my hair blonde.

 

04:00 Joyce Lofstrom 

Oh, my…Yeah.

 

04:03 Tom Willner

So, I was a hit at you know, at work and at the salon. My wife was, well, my wife said it was kind of neat because it was like getting to sleep with this new guy. And a friend of mine said, “Wow if this is what you do, I want to be there for your midlife crisis.”

 

04:22 Joyce Lofstrom 

That's great. 

 

04:26 Tom Willner

Unfortunately, about six months in, I went to one of my regular CT scans and had metastasis in my lung. So, everything changed again. 

 

I ended up getting a lung thoracotomy and wedge resection, and then, I started chemotherapy. And it was funny after going through all those major surgeries mentioned before that seemed like the worst thing in my life. Then I did chemo, and I decided “Nope, I would much rather have the surgeries now.”

 

We decided actually to start in vitro fertilization during all of this as well. So, while I was going through chemo, my wife got was pregnant from IVF. So basically, we were both of us walking around with nausea and morning sickness, you know, so we were, we were definitely like, the couple you did not want to hang out with.

 

05:22 Joyce Lofstrom

That's a lot to do. Yeah, it is.

 

05:26 Tom Willner

But anyway, overall, the whole ordeal lasted about a year from diagnosis to treatment. Fortunately, I've been clean ever since. Although I have never felt comfortable using the term cured.

 

05:39 Joyce Lofstrom

I would agree with cancer. I think all of us; I'm a cancer survivor, too. I think we all want to use that. It's always in the back of your mind, what might happen again.

 

 Well, I have to say, I think dealing with it, the way you did is, it helps you get through dyeing your hair growing the beard. 

 

And that surgery, the RPLND surgery, and my son Max had it, and it is it's brutal. It's very hard to recover from. 

 

I wanted to ask you because I listened to one of your interviews or read one of the stories about you, and how did you pick a doctor? Because you mentioned that in that one interview that I saw. I think that's important for listeners to understand how to pick a doctor, find the right doctor for this type of cancer?

 

06:24 Tom Willner

Yeah, that's a really good question. Actually. We're fortunate where we live in Atlanta. And we have the Emory Healthcare System here, you know, which is a teaching hospital. 

 

Joyce Lofstrom

Right. 

 

Tom Willner

So, there's research going on, as well as providing health care. So, we felt really good, and basically have been using Emory, you know, since that, ever since.

 

But you know, I think wherever you are, and whatever access that you have, I think it's, it's important to kind of do your own research and know what options you have. And remember, in the end, and I was, you know, like I said, we were very pleased with our care there. 

 

But I do remember one, one thing that I actually we both thought pretty long and hard about at the time was for the RPLND. They just had come out with the nerve-sparing technique. So, that you could potentially, you know, avoid the situation that I ended up with. But very few people in the country actually knew it and did it. And we decided to stay, we really liked, and I'm friends to this day with my urologist. But we decided to stay and, and, you know, have my treatment done here. 

 

But I do occasionally wonder if you know if I had traveled for that RPLND, and he said, you know, he, my doctor, was perfectly okay with that, to do the nerve-sparing technique, my life would have been considerably different. I wouldn't change it. You know, looking back, I've been very fortunate. 

 

But yeah, I think it's important to find somebody that you feel will give you quality treatment and that you feel comfortable with. So, you know, we've always. if we see a doctor, and it's and you know, you don't feel right, you don't feel like you're getting the care that you need, by all means, get a second opinion, go to somebody else. And make sure that you're taking care of yourself.

 

I think the days, like with my parents with having, you know, you go to the doctor and listen to what he says or what she says. I think this now, the way healthcare is at least here if you're kind of in charge of your own health, you know, you need to, you need to be your own advocate and find what you need.

 

09:09 Joyce Lofstrom

I agree. And I think, I know for us to you We searched to find the right place to go, the right physician that had the experience to do the RPLND, and whatever else you have to deal with. So, right. You're lucky with having Emory there in your area as a teaching hospital. So, agreed. 

 

You've kind of touched on this. And there may not be more to add, but if you have anything else about that fertility, and I guess, maybe the fear, but then, the outcome of being able to still have children. And I mean anything else that you and Allyson talked about or anything you could share that might help listeners, that have to face that same situation. 

 

09:54 Tom Willner

Sure. Yeah. You know, I've met a number of testicular cancer patients and survivors since, you know, the ages range. So, there are often you know, we were already talking about having kids, and we were married. And, you know, that was kind of top of mind. So, there was no question in my mind that before I got any kind of surgery or chemo that I was going to going to go to a fertility clinic. 

 

But I think if, you know, you're 17 that probably isn't the first thing you're thinking of. I would highly recommend that you do anyway because you never know how your life is going to change down the road. 

 

Joyce Lofstrom

Right. 

 

Tom Willner

So, I think that was one. I think, as, you know, as we talked about before, it definitely affected my identity, you know, my self-image, right, my manhood. So, it's, it is something that is tricky to deal with. 

 

But I will say, I suppose as it turned out, you know, we that first IVF, I had, we had our daughter, Clara. Three years later, we did another IVF and had my son Elliot. And then five years after that, we did a frozen embryo transfer for, you know, using some of the embryos that were created during the time when we had Elliot, and we had our son Miles. 

 

We were very fortunate that this all worked out. And you know that we were able to do that three times. And they worked. 

 

Joyce Lofstrom

Right. 

 

Tom Willner

And it's funny, my wife likes to call our third Miles, likes to call him our bonus Miles.

 

11:36 Joyce Lofstrom

That's great. 

 

11:38 Tom Willner

Yeah, I like to say that he's, you know, he's a pretty laid-back kid. And so, I like to call him Chill, because, you know, he was frozen for five years. So, and, and last but not least, whenever I need one of those icebreakers, you know, at some event, I typically tell them that my two sons are technically fraternal twins, but they were five years apart. Okay, they were created at the same time. 

 

So, it's kind of funny to look at. I know that they're not identical twins, but they look remarkably similar. So, it's kind of funny.

 

12:13 Joyce Lofstrom

Well, I think you bring up many good points. One that you were able to get this done in three tries, and it worked. And I know not everybody has that. But it's wonderful that you did. And I think also the touch of humor, and sometimes dealing with things that are unexpected or cancer. I mean, it's, it helps to be able to do that, you know, and look at it in that way. 

 

So, I'm glad you shared that. I think I commend you for doing that. 

 

12:46 Tom Willner

Thank you. It's so true. I was about to go with a friend to a class about how to do standup comedy. And then I ended up kind of getting diagnosed with cancer. 

 

And I remember she said, she went to the event and they said, “Well, you know, where's Tom? Willner? Does anybody know?”

 

And she said, “Oh, yeah, that's my friend. He couldn't make it. He got cancer.”

 

And they were like, “Haha. Oh, you're serious.”

 

13:11 Tom Willner

So, Oh, boy. Yeah.

They thought she was joking. It was a, was a comedy class after all, 

 

13:19 Joyce Lofstrom

Yeah. appropriate for that class. 

 

Tom Willner

Yeah. I think humor is, you know, God if you can't, you know, laughter is the best medicine.

 

13:29 Joyce Lofstrom

Right. Yes, I agree. So, I think it's a great segue to my question about your musical and your creativity, which I just, I don't know what to say, Tom. I just think it's so impressive and the many different things you've done that, not only for yourself but to help others. 

 

And so, I guess the first one is about the musical that you wrote called “Turning 30.” And you wrote the music and the script. 

 

Tom Willner

Correct. 

 

Joyce Lofstrom

And then, you've performed it as well. Can you talk about that? 

 

13:57 Tom Willner

Sure, yeah, so you know, I'm a musician as well. And not, unfortunately, not full time, but definitely sort of semi-professional. And so, of course, one of the things

that I used while I was getting through it, I was journaling every day, and I was writing songs about it. 

 

And I had this sort of, the first time ever, this like an epiphany one day, this, this top-down thing that just kind of came to me flowed through me, felt more accurate, that I pulled out my journal and I wrote “Turning 30” at the top. And then I wrote the names of almost all the characters and probably about seven song titles, right on the spot. 

And from that day forward, during my treatment, that was my catharsis, I was working on expressing myself through this music. 

 

And I've never written a musical before. I've written many songs but not a musical, and so, I decided that's what I was going to do. That's that was, I was going to do that while I was going through it. 

 

So, the whole thing is very, very honest, very raw, but also artistic. You know, I definitely take some artistic license and how I do things my, you know, Kima therapist, became a wizard.

 

15:21 Joyce Lofstrom 

I like that,

 

15:24 Tom Willner

You know, the magic potion and the magic potion. And so, all sorts of things like that on ways to sort of portray what, you know, what I was feeling and going through at the time. 

 

And basically, like you mentioned, it was funny for a long time, I didn't, you know, I submitted to a few local theaters. I had some interest, but nothing ever materialized. 

 

And then finally, I decided I wanted to, to put one on myself. So, I found a fellow cancer survivor, a prostate cancer survivor, who said, you know, I'm in he was, he was somebody who worked in theater. And so, he helped me stage it, I got, you know, musicians and actors, mostly friends, and, you know, talented folks that I knew that I had been playing with for a while. 

 

And we did a staged reading. In fact, I ultimately did five different stage readings, four of them were, you know, I was playing the main character and playing the piano and singing. 

 

And then, the last one, I actually raised money for a professional workshop. And so, I got to hire a musical director, you know, a director, higher, you know, actors and professional actors, professional musicians. And, you know, we spent the week tweaking the play, and, you know, and then doing a showcase for local theaters, I did get even more interest at that point. 

 

But what actually ended up happening was, you know, during one of the, during that workshop, one of the actors said, ”You know, you should do this show to teach like, upcoming doctors and nurses and such at teaching hospitals, I think it'd be great for them to hear, you know, this, what the patient experience was like.” 

 

And I thought it was a great idea. Again, I didn't do anything with it for a little while. But then, I got a call from a social worker who had her own business doing…Her name's Anne McSweeney who was doing continuing education classes for health care workers. And interestingly enough, she had, she liked to do kind of creative classes. And she had a woman who did a, a one-person show about end-of-life issues. And she got appendicitis and could not do the event; it was only three weeks away. 

 

So, Anne had seen a story about me in the Atlanta Journal-Constitution in the paper, years back and called me, you know, googled me, found my number, and called me. And I ended up, you know, working with her, we had great synergy.

 

The event was terrific; it went, it was really well-received. There were over 100 people signed up for the, for the event. And so ultimately, we ended up starting a business together called Center Stage Education, where we use the musical and you know, storytelling, about my experience to teach about the patient experience and about clinical empathy.

 

18:47 Joyce Lofstrom

You know, you are so on target with that right now, with medical education. It's just to listen to this about, it must be really fun to watch this as well as learn at the same time. And I think the whole thing of listening to the patient and understanding the patient in what that person needs. I think it is now, I hope it is a big part of, you know, medical school. If not, it needs to be that's my editorial comment. So, do you still perform this if people ask or?

 

19:22 Tom Willner

Yeah, actually, we do a variety of different, you know, presentations through that. So, and we have talked about potentially doing another sort of fully-staged production of it at some point. 

 

But for the most part, I do a, a one-man show, and I've done, you know, the whole show that way. And then, we have discussions about you know, what, what that was like, and what I went through and, and, of course and being the social worker, can really tie it back to, you know, continuing education sort of goals for what we're trying to teach. 

 

We've also done a different a variety of things. So, well, you know, I'll tell my story and intersperse it with some songs. We'll talk about different aspects of the patient experience. I mean, one time, we've even done it for the Obesity Medicine Foundation, and we were the keynote at their annual conference. 

 

So, you know, it didn't even have to be cancer, because the patient experience can be, you know, a lot of things are very similar across any type of disease, or illness. 

 

It’s been, it's been great to be able to, to use it in that way. And so, each one of those, there's at least a portion of the musical that, you know, is, and I'd definitely like to explore the arc of the story, you know, using music through that, those events.

 

21:08 Joyce Lofstrom

That's wonderful. And just to repeat the name of your company is tell us… 

 

21:13 Tom Willner

Center Stage Education. 

 

21:18 Joyce Lofstrom

Well, I'm thinking of who I can recommend it to I have some ideas. So anyway…

 

21:24 Tom Willner

We have a shameless plug: centerstageeducation.com

 

21:28 Joyce Lofstrom

No, I wanted to, I think it's great. And I, it's so different, you know, in terms of how people could learn from it. So, I think it's a great opportunity. 

 

So, one more. I know, you've written a book, I think I came out in 2018: Having a Ball at 30, How I got through cancer by writing a musical.

 

 Tell us about your book. Yeah. So

 

21:51 Tom Willner

I, as I started to do these, you know, speaking and performing engagements about my experience, I kind of wanted to have something that got behind the scenes.  (because) The musical really tells, you know, the story through this, this artistic, in this artistic way, right, and really, hopefully, drives home the emotions and everything through music.

 

But I did want to also tell what it was like going through it and, and, you know, writing the songs and everything. In fact, I like to say, you know, I guess it wasn't, it was because it just wasn't enough to write a musical about my experience with cancer, I had to write a book about writing a musical about my experience with cancer. 

 

Joyce Lofstrom

There you go. 

 

Tom Willner

It's very meta, right? So…But anyway, I literally went through, I had journals. I was journaling nearly every day as I went through this, and I wrote the songs in my journals, that's, you know, where I was, was doing all of this. 

 

And so, I went back to them. And I decided to write the book; each chapter is about a song. And they are in the order that I wrote them, which is not the same order as they appear in the musical. 

 

It's what was going through my mind at the time. And so, I read all I rewrote all this stuff; it was it was emotional, and, and sometimes difficult to go through, it was a little bit of reliving it. 

 

But I wanted to share what was going on in my life at the time and why I wrote that song, and, you know, how it, how it helped, what was it that, you know, what, what was happening, and I guess, a different perspective to that patient experience. And I even include, you know, pictures of myself at the time as a patient and, you know, going through the different procedures and, and chemo and, and pages from my journal, little examples of what was going on. 

 

So, yeah, so that was I really kind of wanted to have something that, that really explored the behind the scenes and, and I also know, you know, I have, I have some friends who are not big fans of musicals, just in general, but they do read. So, I thought, well, you know, there's more than one way to get the message out.

 

24:15 Joyce Lofstrom

Yeah, I live with somebody like that, too. I love musicals, but not everybody does. But I think you make a good point about what you were doing when you're going through the treatment and to be able to put your mind somewhere else instead of sitting there thinking about, I'm getting chemo

 

I think that's maybe a tip that people might want to consider if you if you feel good enough to do that. Not everybody does, I guess, but that's a good way to kind of use your energy and perhaps your creativity at the same time.

 

24:52 Tom Willner

Yeah, whatever. You know, whatever your interests are, and whatever ways you find, you know, maybe it's going to a support group and talking with other people, maybe it's journaling, maybe it's you know, writing something or painting or whatever it might be. I found it to be incredibly cathartic as I was going through it.

25:14 Joyce Lofstrom

So, what are you doing? Now? I know the music is part of you and what you know, it's still there. So, what you want to do if people want to hear it, or have you teach it, but what else are you doing?

 

25:25 Tom Willner

Well, so right now, you know, for my, most of my career, my main job, my main source of income has always been technology. 

 

And so, I did spend appropriately enough, a long time with the American Cancer Society doing technology there. And, you know, I'm very proud of some of the things I was able to accomplish there. In fact, there was also, I used my music there as well, you know, to help, raise money for the cause. And I worked on, you know, our, the call centers and a website to help, you know, millions of people online, get the cancer information that they, they needed, but now I have more recently moved into higher education. 

 

So, I really love working for Georgia State University. And, you know, we're considered one of the most innovative in the country, in terms of kind of use of technology to help students succeed to help them graduate. So, you know, that's kind of what I do by day. 

 

And I have Center Stage Education that, um, you know, as, as kind of an outlet for my, my music, and, you know, being able to, to talk about, you know, probably one of the most critical and influential parts of my life, and hopefully, you know, help people through that. 

 

And right now, I'm pursuing a master's degree in education, because I think there's sort of an education bent through most of what I've done with my career and hoping to eventually get a doctorate. So, that's kind of what I've been up to.

 

27:16 Joyce Lofstrom

I think that's wonderful. And I will say, I had have done some adjunct teaching in public relations. That's my background, and I really enjoyed it. I think being close to and connecting with students is one of the most valuable things I've done in my career. I don't teach any longer. And I had thought about a Ph.D. as well. So, I commend you for doing that, I think it's learning like that. It's, you know, the phrase lifelong learning, but it's very true. Now, there's so much still to learn and to act on.

 

So, I have one more question, and that question is just what would you recommend or say to any young man who might think he has testicular cancer? Or has it and is trying to deal with it? Do you have any advice that you would like to share? 

 

28:06 Tom Willner

Yeah, I think, if you think that you may have it, my biggest piece of advice would be don't wait. Get it checked out, the earlier the better. 

 

I was definitely one of those people who was sort of in denial and was thinking, “Yeah, there's something weird going on down there, I'll get to it.”

 

But that's probably the worst thing you can do. And it turns out, mine was pretty, what's the word I'm looking for, aggressive; it was a pretty aggressive tumor. So, if I had waited too long, it probably would have spread even more than it did. 

 

Obviously, the earlier that you go, it will literally be better for your, your potential outcomes, as well as how much disruption in your life, right? If I had gone perhaps even earlier, and I didn't wait that long, it was maybe only a few weeks after I discovered it, to the point where I actually went to the doctor, you know, if I could have avoided the metastasis.

 

Joyce Lofstrom

Right. 

 

Tom Willner

That might have been, you know, would have been, that would have been a pretty life-changing improvement. So anyway, that would be my advice to anybody who notices something there. 

 

29:20 Joyce Lofstrom

And what it says, Yeah, no, I interrupted you. So, go ahead. 

 

29:22 Tom Willner

Yeah, that's okay. I was, I was just going to say, if you already have testicular cancer, I would say, you know, lot of the things that we've already discussed, you know, try to keep, keep pressing forward, keep doing what you know, look at what you need to do look for help anywhere that you can find it. 

 

And know that there's been like, for me, it was 20 years ago that I was treated, and I've since been to conferences and stuff and have learned a lot about what's available now. It keeps getting better, right? The survival rates are improving; the treatments are less invasive, you know.

 

I lost my father to cancer; my sister is a cancer survivor. I just, I know, so many people touched by cancer. And I think the number one thing is, you know, just keep living your life and do everything you can to get through it and whatever you can do to prolong your life and the quality of it.

 

30:35 Joyce Lofstrom

That's great advice. And I think it's a good point to end on. And I just want to say thank you for taking the time to join me and talk about your journey and the different things that you've done with your musical in your business. 

 

So, I wish you the best to maybe come back, if there's some more happening with some of your musicals or books. 

 

30:57 Tom Willner

I would love to. Thank you so much, Joyce, it was a pleasure talking with you.

 

31:01 Joyce Lofstrom

Thanks. Thanks so much for joining me today on Don't Give Up on Testicular Cancer from the Max Mallory Foundation. We have a website; 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.