It's OK to Talk about Your Balls and Testicular Cancer - Episode #7

Jason Birckbichler approached his testicular cancer diagnosis with humor chronicling his journey on his blog A Ballsy Sense of Tumor. Hear from Jason as he talks about his life before, during, and after cancer...and why men should be comfortable talking about their health. It's all in this episode from the Max Mallory Foundation.

Transcript

It’s Ok to Talk about Your Balls and Testicular Cancer

Time: 28:20

SUMMARY KEYWORDS

testicular cancer, cancer, chemo, cancer survivor, pediatrician, testicular, Justin Birckbichler, Max Mallory Foundation, Joyce Lofstrom

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 in 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. With me today is Justin Birckbichler, and we are very honored to have him on the program. He's done quite a bit in the last few years for building awareness of testicular cancer. He's also a testicular cancer survivor. So Justin, welcome. And thank you so much for taking the time to join me today.

00:57  Justin Birckbichler

Thanks for having me. I'm glad to be here and talk with you.

01:00  Joyce Lofstrom

So why don't we start and just let you share your story and tell us about your cancer journey? And we'll just go from there.

01:09  Justin Birckbichler

Yeah, absolutely. 

So the timing of us having this conversation is actually kind of coincidental because we're recording this here on October 28. And that's actually the four-year anniversary of when I had my orchiectomy. 

So yeah, about this time, four years ago, I was recovering in bed from the surgery, but I'm putting the cart before the horse there a little bit. 

My story really starts in early October 2016. I was 25 years old at the time. And I happened to be doing my monthly routine self-exam, which was like pretty much the only thing that I actually followed health recommendation-wise from doctors. 

And I detected that there was a lump on the left testicle that had not been there in September. So after a couple of days of kind of hemming and hawing over it, days is probably closer to about two weeks, I got myself to a doctor. 

They did an ultrasound and found that there was a lump, or you know, indeed a lump that didn't look great on ultrasound. So they sent me off to a urologist, and I met with a urologist on October 26. So it would have been two days ago, four years ago. 

He said, "You know, based on everything that I'm seeing, you have testicular cancer, and we need to operate like immediately. And to me, saying you need to operate immediately means like, within the next week or so. And I was like, "Okay, what's your schedule look like next week? He's like, "No, no, I mean, like tomorrow."

02:43  Justin Birckbichler

So, it was kind of a shell shock at that time.  

I said, "You know, I couldn't commit to tomorrow,"  because it was like the afternoon that I had the appointment. 

And so he said, "Okay, how about Friday," which was the day after tomorrow.

I was like, "Well, you're really driving a hard bargain there."

 So, obviously, I went through with the surgery. After surgery, I had full-body CAT scans and X-rays, and the whole gamut of everything. And they found that, unfortunately, the cancer had spread to my lymph nodes. 

So. I was going to need chemo. 

I started chemo the Monday after Thanksgiving in 2016. So, you know, actually, it was exactly a month after surgery. So, I went through chemo for about, it was supposed to be nine weeks but ended up being 10 weeks, because my immune system straight up just disappeared in the middle of one of the cycles. And they were like, "Yeah, you probably shouldn't even leave your house."

03:44  Joyce Lofstrom

So okay. Yeah, I understand that.

03:47  Justin Birckbichler

So, it ended up I had 21 treatments over 10 weeks, which was just as fun as it sounds. And that then carries forward to finish chemo in January 2017. Then, I was officially placed in remission status in March of 2017. And ever since then have been remained in remission. status. So, you know, coming up, we're just coming up on about four years of remission here in a couple of months.

04:19  Joyce Lofstrom

Well, I think what I found interesting when I was looking at all the information on your website. it sounded like that when you started this journey with the chemo, you decided to approach it with some humor and kind of attack if I can use that word, the cancer that way. But I think also with a long-term plan of sharing your experience and insights with others. So is that accurate? Can you talk about that approach a little bit?

04:45  Justin Birckbichler

Yeah. So you know, I always kind of joke around with people that the decision to make the blog was, you know, a snap decision. It didn't really have much thought into it as much as how to come up with a name for the blog because I wanted it to be catchy. And I feel like I accomplished that. 

When I was diagnosed, like I said, I was 25 years old. I knew I was going to need chemo, and I went online, again, because I was a 25-year-old. And that's what we do when we're in our 20s is to try to find kind of a comprehensive account of everything, what it meant to go through chemo. 

I couldn't find anything written from the male, mid-20s perspective, but I had been kind of journaling throughout the time. And in just a Google Doc, and I shared it with one of my friends. My friend was like, you know, "You've been talking about how you wish that there was a resource, and what you're doing right now is effectively creating that resource. So why don't you make it a website?" 

And so I was like, alright, that sounds good. But we have to come up with a really cool name for it. So then, it kind of evolved from there, you know. It's still a lot about my story, but from there, has expanded into talking about mental health, after cancer, and survivorship, after cancer. 

Then, the big focus is just men's health, including testicular cancer, but all men's health.  (I am) just trying to get guys to talk about their health in a humorous and engaging way, because nobody really likes to be lectured about their health; it just really turns them off from it. So, you know, I find when you crack a joke about it, it kind of puts people's minds at ease a little bit more, and they are more willing to have a conversation.

06:34  Joyce Lofstrom

Well, I think you're 100% correct that most men don't want to talk about their health, or as you were doing, your self-exams. They don't want to do that. I talked to other young men who either didn't do it or if they found something, wouldn't go to the doctor to find out what it was. And I have to ask you this, did you have a reason why that exam you were willing to do?

06:57  Justin Birckbichler

I honestly don't have a real reason. It was something my pediatrician really drilled into me and something that was important to be doing monthly in the shower. And, you know, I'll be fully transparent.  I was really bad at getting myself to the doctor, once I moved out of my parents home.

They didn't, you know, take me to the pediatrician every six months, or however often or every month or no, every year.  See, like, I didn't even know how often I was supposed to be going to the doctor. Every six months is the dentist; every year is his doctor. That's what it is.

But I don't really know what it was. It was something that stuck with me. And actually, the one time that I did go to the doctor, once I moved out of my parents...I moved out of my parents when I was 22, right after college. And like I said, I was diagnosed at 25. And in that three-year period, I had gone to the doctor one time, and that one time I had been there that the doctor said something to the effect of, make sure you're doing monthly testicular self-exams.

So something happened. The stars aligned in some way to make sure that I knew that there was something important. And so it's just something that I knew, and I still continue to this day, Even though, you know, takes me half as long right now because I only have one to examine versus two.  So I get some time back; there you go. Yes. Silver linings.

But it's something that's easy. And you know, I do really feel very strongly about it. But there's some discrepancy in what doctors and the USPSTF recommend. But I'm a big proponent for it because to be quite frank, if I hadn't done that, I can't guarantee that you and I would be talking today, right?

08:45  Joyce Lofstrom

No, you're right. And I really like what you said too, about the pediatrician telling you to do that and making a big deal out of that exam. Because I think that's something that, you know, we've learned, we being Max's dad, my son's dad, and I over Max's journey because we didn't have that with a pediatrician. And you know, he had a different kind of cancer. But I'm not going to go into that right now.  I just want to say that that's great that your pediatrician could do that and reminded you how important it was.

But I want to go back to the chemo discussion in the guide that you developed, which was What to Expect When You Are Expecting Chemo. And I think you made a very valid point about the audience and the way the content was written or is written for cancer patients out there.

Tell us a little bit about that book or that guide that you have. I think that's something that would be valuable to many, many people.

09:44  Justin Birckbichler

Yeah, absolutely. 

So like I said, it was something that I wish I had when I was first diagnosed. So I ended up kind of crafting that resource, if you will, over the, whoa, you know more than just the 10 weeks that I was doing it. I still continue to update it to this day. 

What I did was, I took pretty much the whole narrative - everything from when you first feel a lump to work all the way to now you're a cancer survivor.  What does that mean? I wrote it into one guide that hyperlinks to individual pieces I wrote that expand on it because, you know, some, some guys may not need to get a port place. So they don't necessarily need to read the thousand words I wrote on the port. 

One thing that I did that was actually kind of inspired by a comment I read on Reddit, somehow the article got shared on there. Somebody said, you know, this was a great resource. But, you know, it was a lot to read. 

One of the biggest things, as I was going through chemo, was I couldn't focus on things long enough to be able to read. So I think the entire piece is like 3,000 words or something like that, which isn't too terribly long.  But in the midst of chemo, 3,000 words, just like reading, you know, Homer's Iliad. 

So I went back, and I just basically narrated the whole thing in and then uploaded separate audio files for each section. And it was, it took me maybe an afternoon to do that. But it's something that, you know, it's probably the whole reason I got started was to provide the resource for future versions of Justin, who was coming along. It's a piece that I'm really proud of, not to like toot my own horn or anything. 

It's something that is nice because a lot of people reach out to me, whether it's on social media or email in saying, "Hey, I just got diagnosed; I came across your website. Can you give me some tips about chemo"? 

And I can just send them that resource.  Most of that was written in the midst of things, and that's going to be a lot better of a resource for them and have more detail than me trying to recollect things that happened about four years ago, especially given the fact that I had memory problems when I was going through chemo. So if I hadn't written it down then, I don't know. You know, there's like gaps in my memory from going through chemo. So it's a piece that really gets back to the core purpose of why I started writing.

12:24  Joyce Lofstrom

And I like also, then it's an audio file that looks like a podcast in a way, because I think for many people sitting in bed or going through chemo or wherever you are, just being able to listen to that would be very helpful. It might be even easier than trying to read anything. So I will listen to it, and I haven't yet, but I think that's something just to understand chemo and what people go through with it. 

So we've talked a lot about just, you know, your journey and what you've been, it's been, what, four years now, three years being cancer-free. Well, what do you think was your biggest challenge during the whole treatment phase?

13:03  Justin Birckbichler

I think without a doubt, the biggest physical challenge during the treatment was right toward the end of treatment, I made it through 19 of the 21 events without having any sort of nausea, or I had nausea, but no vomiting. 

And here comes treatment 19; it was a loss of the week. I've more than made up for it for the next five days. I didn't realize the human body could produce just so much vomit. And hopefully, nobody's listening to this while they're eating dinner. I apologize if you are, but it was, it was just so physically taxing on my body because I didn't want to eat because I knew I would throw up. But I was still dry heaving anyway. And I wanted to sleep. But I was afraid to sleep because I didn't want to, you know, throw up all of my bed or anything. 

So it was just five days. That was I was so close to the finish line. And it just sucked, to be perfectly honest. But that was physically devastating. 

I would say, emotionally toughest is probably actually past treatment, the whole first year after treatment, transitioning back into, "a normal" life after you've been through something in such a quick timeframe. And I just, I found myself trying to put a round peg in a square hole that just didn't work until I really embrace that.  

I wasn't going to get back to normal; it was going to be kind of a new normal or a new beginning if you will. And that was, you know, the five days of vomiting that was physically tough, but then, the 365 plus days of the mental health stuff that still ebbs and flows to this day, you know, four years later.  Probably those two things are what I always point to as being the two most difficult parts during the cancer experience.

14:58  Joyce Lofstrom

What you're saying is similar to what I've heard from other young men on this topic, and it's you want things to be normal. And you said it's a new normal; you're back to some kind of, I guess, consistency in life. 

But I think what you've been through, definitely does change just what you're doing and how you live. And I'm really sorry, you had to go through five days of excessive vomiting like that. It just sounds pretty awful. I guess that's part of the journey. 

The other thing I noticed, too, which I think a lot of our listeners need to know about with some of the things you've done, is the TEDx talk that you did talking about men's health and how you opened the program today. 

How did you decide to do a TEDx talk? And I mean, I know you have great motivation and insight on everything related to what you've done on testicular cancer, but that's a big step for a lot of people - trying to do a TEDx talk.

16:00  Justin Birckbichler

Yeah, so it, it was just something, you know, with TED Talks, I mean, they've been popular for a number of years. But I just, I really realized that as I wrote more and shared my story, and it seemed to resonate with people more and more, it was something that I wanted to do.

And I wanted to talk about testicular cancer and men's health in a way that was true to me. Well, you know, sharing my specific experience, sharing my mission, my passion, but also in a fun way, because nobody really thinks cancer and also thinks fun at the same time.

That was when I, you know, got selected to do the TEDx Talk, I was paired with a speaker coach.  It was something, she's like, you need to let people know upfront they have permission to laugh because of what you're talking about. 

So it was all about, you know, my journey. Then, I kind of zoomed out to a larger lens about how society from a young age talks to boys as they're growing up that they are to keep things in, and not talk about it, whether it's mental health or physical health, and how much of a detriment that ends up being later in life. 

Because we, you know, we internalize things that, oh, you know, I just need to walk it off, or I don't need to talk about it. But you can't walk off some things. And so I feel really strongly about changing societal expectations and norms. Hey, not only is it okay to talk about your health, it should be encouraged. And it shouldn't be seen as a sign of weakness, it should be seen as just a regular topic of conversation. 

I work in elementary school, and that's what my whole career has been. Working in an elementary school, there's a ton of, you know, I work with a lot of women. They're constantly talking about going in for mammograms, or pap smears or into the gynecologist or when they're pregnant, going to the OB-GYN, all sorts of things. And they're just commonplace topics. 

I want guys to get to the same level where it's, you know if you're with your buddies, and you just simply say, hey, have you done your testicular self-exam? Or if you're later in life, have you gone in for a prostate exam and for it to not be something embarrassing or not be awkward. And I really feel strongly that humor is a good way to, you know, to use here to really get the ball rolling on that conversation.

18:33

No, I think you're right. I like to just the idea that needs to be commonplace as in women. You're right, we talk a lot about those health issues and what we have to do to take care of breast health or gynecological health.

So again, I commend you for just taking that on and trying to get the ball rolling, as you said, on that.

We've talked about your website and I want to just go back to that before I segue into some other topics, but you know, A Ballsy Sense of Tumor is the website or your blog.  Tell us, and be self-promotional here, but tell us what can we find on there? I don't know. What do you want men to go look for or their caregivers?

19:18  Justin Birckbichler

Yeah, absolutely. So, you know, it's, I like to say, it's a pretty comprehensive guide as one person can make on men's health. I have my whole story in its entirety.

I've done interviews with various different, other testicular cancer survivors, even some celebrities. I've talked with Scott Hamilton a couple of times, the figure skater, talked with Nathan Adrian, the Olympic swimmer. I've talked with others you know, just in addition to famous people. I've talked with a lot of regular guys who, for whatever reason, were also diagnosed with testicular cancer, but didn't let that stop them. 

Once a month I pick one guy, and he writes a guest piece about his journey and where it led him, and you know, guys who have written books about their experience. And then I also just talk about, you know, men's health topics or companies that are doing things to promote men's health, and also, talk a lot about mental health, both just in general. And then also for cancer survivors in general. 

So, really, there's like 150ish, give or take maybe closer to 200, different pieces. So you could lock yourself in a room and just read a lot of really bad ball puns for like a weekend. And then you have everything.

20:43  Joyce Lofstrom

Okay, I think that's good to know about and, you know, on the mental health topic, I have often thought it's hard to find counselors that, at least in my experience, specialize in say cancer or diabetes, I have diabetes, and I've looked, you know, there are a lot of very good mental health counselors. I just wondered if you've found that or any recommendations or thought in terms of someone looking for a counselor to talk about cancer.

21:15  Justin Birckbichler

So I know that I haven't personally had much success. But in talking with other organizations, there are some counselors or therapists, whatever word you prefer, who do specialize in talking about cancer. And, you know, oftentimes, you can talk with your oncologist and medical team, and they can point you in the right direction. 

But one thing that, two things really, that I found have been helpful is looking for, if you've gone through, you know, testicular cancer or male-specific cancer look, looking for a counselor who specializes in male issues. That's when I went, you know, I was with one counselor for several months, but I just couldn't really connect with her because we weren't on the same page about a lot of things. 

And so when I went to find another one from my insurance drop-down list, I saw that men's issues was something,  so click that. And then another thing that was recommended to me was to find a trauma counselor, because cancer is trauma, in every sense of the word mental and physical trauma to the body and to the mind. And so even if someone doesn't necessarily specialize in cancer, per se, there are tons of specialists in trauma, and they can help overcome different things. But the biggest thing is to take that step to reach out to find somebody to put yourself in a position to move forward.

22:39  Joyce Lofstrom 

Thank you, I think those search words that you mentioned are good: men's issues and trauma. Those are two topic areas that make sense to me in looking for that. So tell us about what you're doing now, you know, three or four years later, what's going on?

22:54  Justin Birckbichler

Yeah, so three or four years later, the, I guess the biggest change is really that I just, you know, I continue to write about testicular cancer, but doing a lot more on making the best of my second shot at life, if you will. 

My 2020 it's been a wild year, to say the least worldwide. And personally, I lost my cat, my pet cat unexpectedly in July. Last week, I just adopted two new kittens. So I've been working to bond with them over the past week or so. I'm actually sitting in the room that I'm keeping them in right now. 

And, you know, just really trying to continue to get guys to talk about their health, but also, focus in on my own health and my own mental health and what brings me joy, you know. (I am) taking time for me, which sometimes sounds a little selfish, but it's something that just helps my own quality of life. 

I always go with the metaphor of you can't pour from an empty pitcher. And if I'm not taking care of me, then I can't take care of my loved ones or my friends or just random people on the internet who reach out to me and ask about testicular cancer.

24:06  Joyce Lofstrom

Well, I'm sorry for the loss of your cat. I understand that. We have three rescue dogs. So I'm glad that you were able to find two kittens to be part of your life. It makes a huge difference when you have a pet like that, think.

 How about philosophically? I think you've already kind of touched on it, but going through cancer and surviving, I think for many people, you know, live a day at a time now. You really appreciate what you have in life. Did you have any philosophical, I mean, big changes that happened to you as a result of having and surviving cancer?

24:42  Justin Birckbichler

Yeah, like you said, I kind of touched on it, but really finding stuff that appeals to me and things that I want to do. Versus, you know, it sounds counterproductive, but I spend a lot more time saying no now than I did.  I know now more if it doesn't appeal to me, or I don't think it's something that is really worth the time, I now know how valuable time is and so, I find what works for me what makes me happy. And I go, kind of from there, but that's been probably the biggest philosophical shift.

25:22  Joyce Lofstrom

And how about my final question...advice for any young man who has testicular cancer or might think he has testicular cancer? What advice would you share?

25:32 Justin Birckbichler

Well, two things really.

If you think you have testicular cancer, go to a doctor., it's, it's just as easy. 

If you have any, if you suspect and they do an ultrasound, and they find it was clear, all that you sacrificed was a little bit of your time. 

If they find out that you did have cancer, hopefully, they caught it early enough. And it's a surgery, or maybe some chemo, but it is very survivable. 

But to someone who's going through testicular cancer, already been through the process of diagnosis, and going through it now, is that you're not alone. There's, you know, in the United States alone, there are almost 10,000 new cases every year, you can pound that out over tons of years. 

There are a lot of survivors out there.  Just reach out, whether it's to me or to you. You know you go on social media, there are specific testicular cancer support groups. And you're not alone in the battle, and you don't have to do it alone. And you shouldn't do it alone. 

It's important to connect with somebody who truly understands what you're going through and then pay it forward from there. You know, if we all have everybody do their little part in moving the conversation forward and then move forward, then we can make sure that nobody has to feel embarrassed about talking about their health or nobody has to feel alone in it.

26:58  Joyce Lofstrom 

Very good advice and share one more time on how to find you on your website so people have that URL.

27:06  Justin Birckbichler

It's just aballsysenseofhumor.com all one word, or you can just type it into Google, and it will come up that way.

27:13  Joyce Lofstrom
Well, once again, Justin, I really appreciate you taking the time to be with me today and our listeners. And I hope you'll come back at some point down the road. We can talk more about what's going on with cancer and just life. So once again, thanks.

27:29  Justin Birckbichler
Thanks for having me. It's been a pleasure. 

27:32  Joyce Lofstrom

Thanks so much for joining me today on Don't Give Up on Testicular Cancer from the  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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