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Today, I’m talking to Justin who found that when document your cancer journey, it helps you and gives you a higher purpose in helping so many others by promoting cancer awareness. Sharing your story is a fantastic way to transform these tough times when you’re dealing with cancer, to share your experience in such a powerful, so you can really refocus and re-centre your life around something positive. Here is what we cover:
- Dealing with cancer diagnosis
- Mental health during cancer
- Documenting your cancer journey
- and much, much more!
Justin Birckbichler | Cure Today
Episode 003: Building Knowledge Beats Cancer Anxiety
Joe: Justin, I want to start with your life before cancer. What was that like?
Justin: That was a really good year, 2016, prior to getting diagnosed. I had applied and been accepted to the Google Innovator Academy, so I got to fly out to the Google headquarters in California for a couple of days, I got engaged, we bought a house in a different area of Virginia, I quit my job and found one that was more aligned to my educational beliefs, we got a puppy. Everything was great, I was very active, you know, I wasn’t as in shape as I would have liked to, but I had some physical fitness ability. It was a good year, really, up until I got diagnosed.
Joe: Right, it’s pretty crazy. What was going through your mind when you first found out you had cancer?
Justin: I discovered a lump in the shower when I was just doing my monthly self-exam. I feel a hard lump, I haven’t felt this before, so I was a little baffled. Like I said, we had just moved to a different area of Virginia, so I didn’t even have a doctor at the time. I had to locate a doctor. Then, basically, the first time meeting this doctor, I asked her to grab my balls. I don’t normally even kiss on the first dates, so that was jumping through a couple of steps right there. I just kept wanting answers. From that doctor, they bumped me to an ultrasound and then to a urologist. I just wanted answers. When they finally told me I had cancer, it’s going to sound weird, but it was almost a relief because I had answers. Then it all hit me, “I’m 25 and I have cancer. What do I do next?”
Joe: Yes, well that’s a big shock. You said it was almost a relief. How did you know what was going on?
Justin: I basically just asked my urologist, what’s the next steps? My urologist was incredibly throughout the whole thing, he was like, “You’re going to need surgery, and quickly.” I never really had time to react or really question. I just had to launch into the action steps of things. Basically, I just asked the questions, what’s the next step? That’s how I figured out what was going on.
Joe: Yes, I know your way with cancer. I went into the zone, where I knew people around me were saying something, I knew the words, but I really couldn’t take it all in. It was just so hard to deal with it.
Justin: Yes, absolutely. It was hard to try to figure out what I was doing and then how to tell people the other same information. Eventually, it was like, when there’s stuff to tell you, I will tell you.
Joe: Yes, exactly. Justin, do you feel as a man you’re expected to react to cancer in a certain way?
Justin: Yes, that’s a lot of what I do now on the survivorship of things, is have a steady resolve, like, I’m going to get through this. It was hard to be emotional about it, my grandfather had cancer, he passed away from it a couple of years ago. He never really talked about his battle with cancer. You always see in the media, female celebrities talking about their different forms of cancer and so on and so forth, but you don’t necessarily see a lot of people talking, unless they’re older men, talking about prostate cancer or something, to that effect. I felt at first it was something like, I’m just going to go through this and keep it to myself, but then that obviously changed, as we’re here talking about cancer.
Joe: Exactly. On the practical side of things, you have a lot of stuff to juggle when you have cancer. You have work, you have people you care about, then you’re running around for tests. Then you go for treatment. This everyday reality for cancer, how did it work out for you?
Justin: With testicular cancer, it’s highly curable but it’s very aggressive, so you have to move very quickly. At my job as an elementary school teacher, I basically told my principle, listen, I’m expecting I have some sort of lump, he’s like, “You go and get this taken care of.” I literally got my ultrasound during my planning period, during school. I’d left for 45 minutes, they wanted my balls, and then I went back to school. I wish I would have had a shower in between those because that was not fun teaching for the rest of the day. Then when I did get diagnosed, and said I needed surgery, that was great.
I never had to worry about that. My fiancé, wife now, she was great. We were just talking about updating people. I just had a really good support team. I was very fortunate that as I was gearing up to go to chemo and I needed my port place and I needed to get some other random bloodwork done, my principle would say, “Hey, you can come in an hour late or leave and hour early or whatever”, to try to conserve a lot of my sick leave. Then, eventually, when I did go into the active treatments, at a stage, I was on medical leave for three months. I didn’t have to worry about work at that point.
Joe: Yes, that’s fantastic when you’ve got work that’s supporting you so much through it. I guess cancer can be pretty hard to take emotionally and mentally. It certainly was for me. Nothing is for certain anyway, everything is up in the air, you make all of these plans and you don’t really know how these things will turn out. How did it affect you?
Justin: I’ve been notorious for keeping my emotions in for all of my life and probably even including now, I’m getting a little better. Not as much as it should be at 26. It was definitely affecting me. What I did to try to relieve that and not bottle it up, because I had already felt myself starting to get a little angsty or what have you, I started writing down what was happening. It was more of a record, just for myself and then also as a way to get that out.
It was definitely affecting me, because to be perfectly honest, from surgery to starting chemo was exactly one month, so I really didn’t have a lot of time to let anything affect me at the time. A lot of the emotional came afterwards, after active treatment. That was kind of a blessing that everything moved so quickly. Writing is really how I got through a lot of the emotional stuff throughout.
Joe: When you say writing, did you have a diary?
Justin: It was just a Google Doc that I wrote everything from the day I found the lump, up until present day. I still continue to write, but now it’s more of a public form.
Joe: What did you do with that diary? Is it still there or did you put it all up on your blog?
Justin: It’s all up in my blog now. It wasn’t even called a Ballsy Sense of Tumour at first, it was just called the Cancer Chronicles, which then I adapted it into Chemo Chronicles for part of my series. Yes, there are a couple of different labels on my blog, but the first about 15 or so posts were the original journal, if you will, of the Cancer Chronicles. Then I eventually stopped writing on that and then I still write drafts in Google and then I publish them on the web.
Joe: I think that’s such a fantastic advice, Justin, that you found a way to deal with your emotions through writing. It’s something that isn’t really obvious to most people. I think I read that in one of your articles, as well. In terms of your emotions, as well, you mentioned that it hit you a little bit later down the line. How did that work out?
Justin: I finished my active treatment in January of 2017. Then they said I was in remission of March. Things were trucking along just fine. Then around sometime in the summer, I noticed that I was just feeling down a lot and angry, and for no apparent reason. For all intents and purposes, I didn’t have cancer anymore, I should be happy, but I wasn’t. Then it finally took me until September, just a couple of months ago to really admit, hey, something’s definitely well off here.
I talked to my oncologist and I was like, I had suffered through depression in high school. I was already familiar with what that feels like and what to look for. I’m feeling a lot of the same things, I need help. He prescribed me some antidepressants. After tweaking the dosage for a while, that’s been hugely helpful. That was the big thing I noticed is, I forget what the one quote I said once, it’s like, treating cancer was hard physically, surviving cancer is hard emotionally.
That’s what I noticed, the survivorship stage while it’s physically easy and I’ve gotten back into shape and my hair’s regrown and all the side-effects associated with chemo, they’re all gone, but the mental scars are still there. I’m not just writing about testicular health and men talking about their balls, that’s the other thing I really advocate for is mental health.
Joe: Absolutely. Why do you think that happens? Why do you think that, like you described, you had chemo, the cancer is gone, everything is supposed to turn out well, yet, you still felt this downward slide emotionally? Why does it happen?
Justin: In my opinion, I’m not a doctor, but what I think it is, is everything moves so quickly. Like I said, it was a month from surgery to chemo, and then it was three months straight of chemo. Then it was three months straight of chemo and then I was suddenly thrust back into the real world. I never took the time to process. All of sudden, a rubber band can only stretch so far before it’s going to snap. I think it just all came to a head and I think not necessarily – I still had my writing and everything, but really, I had writing, I had exercise, but there is something that just changes within you. You shouldn’t be afraid to ask for help. That’s just what I noticed.
Joe: Absolutely. Speaking of asking for help, how did your family, your friends, how did they react? Did they support you in the way that you wanted to be supported?
Justin: In all but one case, and I’ll get into that one case a little bit more, everybody was supper supportive. I could not have said anything. My mom, who lives in Pennsylvania, which is a couple of hours away from where I live, as soon as I said I was going to need surgery, she was like, “I’ll drop everything to come take care of you.” Then she took extended leave from work to come take care of me while I was going through chemo, so my wife could go work, so we still had some sort of income coming in. Everybody was super supportive; my friends were all more than great.
I did have one friend who when I had to pull back some of my projects that I had been working on prior to cancer, had pulled back because I had to focus on my health, then I decided to start all of my awareness efforts. She took that as a personal attack, that I didn’t want to work with her, whereas, I had a change in what I saw as important. Her direct quote, one night she said she felt that I was pulling back from our friendship. She said, “I thought our friendship was stronger than you getting cancer.”
Justin: I stopped talking to her at that point. I emailed her a month or two later and I was like, “That wasn’t okay to say.” We’re not friends now to this day, but it was just interesting that random people on the internet that I’ve never met were more supportive than someone who had claimed to be my best friend.
Joe: Yes, wow, that’s rough, man. The other thing I want to ask you is, we talked about how you now speak so much about men’s health and the mental health. I’m sure you spend a lot of time thinking about all of this stuff and trying to digest it all. Justin, what do you think that is different about men facing cancer? Do we look at things in a different way? Do we process things differently?
Justin: I know with me and the men who I’m close to in my life, we’re very solution-oriented. We want to know, here’s the problem, here’s how we fix it, we fix it, what’s the next step. Or what’s the next problem, more accurately half the time. Which is a pragmatic approach, it’s great sometimes, but it’s also terrible sometimes, because you do need to take care of the emotional side along with the physical side. I think on top of that, men just don’t talk about their health as much as they should.
I’m running a research study right now on men and going to the doctor and testicular exams. Most guys who I’ve asked about are great and they say that they’re more than happy to participate in this study, in this survey. They ask me questions when I ask them: Does the doctor talk to you about how to do a self-exam? They’re like, no, but I want to know how. Then I’ll interview a group of guys, then one out of nowhere will be like, no, I don’t want to participate.
I’ll be like, okay, it’s like as a teacher, I should say, don’t use peer pressure, but I’m totally trying to get this guy peer pressured into this to talking about it. It’s just kind of insanity to me, how you would rather not have embarrassment, just to avoid talking about something that is very, for all intents and purposes, maybe it’s a little embarrassing, but it could save your life.
Joe: Yes, absolutely. What about your partner, how did she take it all?
Justin: She took it very well. She was a great caregiver, like I said, my mom and get were a caregiving team. One of them would take care of the house and the pets and all the assorted things and the other one would take care of me. She did a very good job. She really put on a strong front throughout the whole process.
Joe: Yes, that’s fantastic. Do you think that she’s had the support that she wanted from the people around her?
Justin: I think so. She’d have friends who would check in on her, to check in on me, but also to check in on her and her work was very good about it. If she needed to leave a little bit early to take care of me. I think a lot of times with cancer treatment, it’s so focused on the patient, but I do think that her support system did a very good job of focusing on her as well.
Joe: That’s great. Justin, I went to deposit some sperm away for safe-keeping before starting my chemo. That was a really bizarre experience. You felt like no one thought this thing through from the perspective of the person who was actually going through it. There was no sound isolation, I could hear these two people talking in the corridor. There was a few DVDs in there, it was just awful. It was the worst attempt at porn I have ever seen. There was nothing to be inspired by, I was lucky I came prepared.
Justin: I know exactly what you’re talking about.
Joe: How did that go for you?
Justin: I had to do my deposit, if you will, about seven days after surgery. That was not fun. Like you said, there was this gross couch lounge chair in there. I was like, I’m not sitting on that because I don’t even know. Yes, it was not a pleasant experience. I’m glad I only had to do one deposit because I do not think I would have gone back for another, had they been like, “Something’s wrong here.”
Joe: Justin, that story is worth at least one blog post.
Justin: Yes, I wrote a little bit about that, that would be something to revisit another time because when I wrote that blog post, I was like, no, I’m not going to get into this too much.
Joe: It’s a painful memory. Justin, I was reading about the time that your hair started falling out during chemo. That actually triggered the memory for me when I was doing chemo, where it all started was actually my pubic hair. My pubic hair, of all places, that was like a slap on the face, you know?
Justin: Yes, it’s interesting because they’ve shaved my pubic hair area for the surgery. I just thought it had not grown back. Then I was like, there’s nothing there anymore. It actually started falling out in my armpits first and then my beard and then my hair. I never had to worry about it falling out from my pubic hair because there was nothing there.
Joe: Yes, it’s interesting. I never really thought about that. I did, for my procedure, they didn’t shave it. I guess different places do it differently. Could you please talk about your blog, how did it all start and why is it important to you?
Justin: Yes, what I was talking about earlier, initially it wasn’t going to be a blog, it was just a Google Doc that I was writing my story. I shared it to a friend who is now my editor and chief of the blog. She was like, “This is pretty good. You should make it more than just a private Google Doc that you’re sharing with me.” The biggest thing that we talked about at first was, okay, cool, but what do we call it? It was called the Cancer Chronicles, that was just the title of the Google Doc, but that wasn’t specific enough for me. It needed to fit two things, it needed to show that it was going to be about testicular cancer, and it needed to show that it wasn’t going to be a woe is me-type blog.
That’s how I came up with a Ballsy Sense of Tumour. It’s a nice play on words, it shows that it’s humorous, it’s about balls. It’s awesome. When I Was writing up some of the initial posts to make them more public. I was like, I want to make this more than just: Here’s what happened to Justin, here’s how he supported. I started looking up different facts and figures. I found that just men systematically don’t talk about their health at all. That’s why it then became very important to me to get the word out there. If I can talk about my health, maybe that will inspire another guy to do a self-exam or talk about his health.
That’s what keeps me going, is knowing I could – sometimes, especially with different social media algorithms changing what they promote and so on and so forth, it gets frustrating. Then I hear the research study I’ve been writing. That’s been hugely inspiring just to see the conversations. Literally, while I was at the gym today, I interviewed three different guys. All three of them, I taught them how to do a self-exam. I mean, I didn’t drop my pants in the middle of the gym to show them how to do that, they’d already asked me to stop doing that. For all intents and purposes, a public place, teaching guys how to fondle their balls in a healthy environment.
Joe: I like the way you put it.
Joe: Yes, absolutely, Justin. That’s great that you’ve been able to take all of that experience that happened to you and put it into something that’s really positive. What sort of feedback have you had so far?
Justin: Really, it’s been overwhelmingly position. I always take screenshots when I get a cool text, or an email related to something, either somebody saying, “I read your blog and I forwarded it onto my brother and he did a self-exam and he discovered that there was a lump there. Thank goodness I know you.” Or, I’ve really had very little pushback. Even when I’m going up to people and saying, “Hey, I’m testicular cancer survivor, I want to ask you a couple of questions.” I’ve only had ten people out of the – I’m at about 400 responses – about ten people say straight up say no, that’s shown that with those ten people, we have work to do, but it shows with the other 300 odd people, they’re willing and open to it. I’ve had overwhelmingly position responses from it. I’m glad to see. I could get punched in the face. Be like, hey, I want to talk about your balls. That could definitely not be taken well. People totally take it well.
Joe: Yes, that’s fantastic. I think it’s such a huge impact area, that all it takes really is one person, for example, found a better way of dealing with it or discovered that they had cancer and got it diagnosed early. All it takes is one case to make it worth your time, right?
Justin: Exactly, I figured, the statistic is like one in every two-hundred and fifty guys are going to develop testicular cancer at some point in their life. I’ve talked, between my blog and social media and in-person, I’ve talked to thousands of people. Divide that out, how many people have detected it earlier just because of me writing about balls incessantly.
Joe: Yes, absolutely, Justin. I noticed one thing that comes up for me is fear of cancer coming back. How do you deal with it and what do you recommend to someone who’s in the same boat?
Justin: I deal with that very frequently. It’s more notably when I’m on six-month scans and the couple of days leading up to the scan and a couple of days between the scan and the appointment is really rough. Then, literally, once the doctor tells me, “You’re still in remission.” I’m like, okay cool, what’s the next step? When’s my next scan? The way I deal with it is, there are two things really, I schedule my scan and my appointment as close as humanly possible, so I don’t have to wait a long time. They wanted me to wait a month and I was like, no, I’m not doing that. You either reschedule me or you have that doctor call me and tell me, either remission or not. That could be a less fun board game that you could play.
Joe: I like that.
Justin: It’s trademarked now. What I also do is I write, because if I know the last scan I had about, or I wrote one post about a scanxiety and how big that gets around the scan. Rather than just thinking about it and spiralling myself, I write it down. By writing it down, that’s the advice I’d give to you, or to other people in the same boat. Recognize that you are going to be anxious. Fear of cancer coming back is something that’s normal, every cancer survivor is going to experience to varying degrees and varying frequencies. Recognise it, get it out, and try to move on. Whether it’s getting out, verbally speaking it, writing it down, drawing a picture, whatever it is to get it out. Don’t try to bury it, just recognise, face it head on, be like hey, the cancer came back. It’s not going to happen, or if it does, I already beat it once, the second time is the charm or the third time, or however many occurrences. Just deal with it in a position mindset as much as possible.
Joe: Absolutely, Justin. I know that for me, cancer gave me a completely different outlook on life, my goals and the things that I do every single day. Did you go through a similar experience?
Justin: Absolutely. My day-to-day, I would teach at school from eight to four, or stay an hour and grade papers and stuff and come home and work on lesson plans or whatever. Go to sleep, start the whole process again. I had no work/life balance whatsoever. Now, I teach until four and I’m at the gym at 4:05. It totally made me take better care of my health because I had let myself go, I was 215 after chemo. Which for someone who’s six feet tall isn’t super heavy, but that’s still a little heavier than you should be. My long-term goals are about men’s health now.
While I’m still very passionate about education, but there are literally hundreds of thousands, if not millions of educational influencers and bloggers and social media fault leaders or whatever out there, but how many testicular cancer people and activists are there out there? I feel like my voice and my time can be better given to that. That’s my long-term goal, is living in a world where every man can talk about balls in a job interview. Probably not actually the best thing to do but give it a whirl. Find a job you don’t really want and go for it.
Joe: Yes, that’s great, Justin. If you have a friend who got diagnosed with cancer, what would you tell him or her?
Justin: I would say make it about more than yourself. Use your experience to educate others. It’s 2018, we don’t need to keep it in. Cancer survival rates are going up, but you can use your story to inspire other people to promote early detection and more awareness. That’s really how we’re going to end up beating cancer. Whether or not we’ll completely eradicate it with a catch-all cure, I’m not sure, I’m not a doctor, but I think we can definitely work on early detection for the time being.
Joe: Yes, that’s fantastic, Justin, I couldn’t agree with you more. You have to make it about something that’s bigger than yourself. I think that’s definitely what helped me. Definitely something that sounds like what helped you, as well.
Joe: Thanks for your time, Justin. I really appreciate it.
Justin: Alright. Thanks for having me.