Friday, June 15, 2018

PCL32: An Update to the Stupid Cancer App

The Stupid Cancer App Came Out Last Year - Time for an Update!

In the fall of 2017, the Stupid Cancer organization, in partnership with Gryt Health, released the Stupid Cancer app. I wrote about my initial impressions of the app soon after its debut and I’ve learned a lot about it since then (not the least of which is realizing that the co-founder is fellow testicular cancer survivor and July’s Band of Ballers feature, Dave Fuehrer - stay tuned). They’ve released a ton of new features over the past few months.

Minor, but needed, improvements to the Stupid Cancer app

This face is also powered by Gryt
One improvement is that the Stupid Cancer app is now available on the Android platform. While that literally has no bearing on my life (since I am an Apple user… for now - I’m going Team Pixel on my next upgrade), this definitely opens it up to a wider platform. Uniballers of Droid, come find me!

Similarly, the cancer type list has been updated to include more types of diagnoses. While testicular cancer has been represented since day one (see my above comment about Dave), it’s great to see more inclusivity in the Stupid Cancer app.

You can now send live links in the Stupid Cancer app, which is very helpful instead of having to retype or copy and paste (aka copy pasta) a link into your web browser. This seems like a minor improvement, but as a millenial, having to do a few extra clicks are the worst thing that has ever happened to me (he says on his blog where he’s also written about losing both his left testicle and all of his hair, regrowing white blood cells, and emptying the contents of his stomach for five days straight).

My favorite improvement to the Stupid Cancer app

Two of the most popular chatrooms
As I expressed in my initial blog post, my biggest desire for the Stupid Cancer app was for individual chat rooms for specific cancer types. While these still don’t exist (I’m still holding out for The Ballroom), they do now have chat rooms defined for special purposes.

The Main Chatroom is kind of the “catch all” and hasn’t changed much since the original iteration. This is where you go just to hang out with the cool kids. There are also individual chat rooms about faith, food, caregivers, and newly diagnosed with cancer. Poke around to find your tribe.

I spend most of my time in the AppChat room. This is where their various chat series occur, including ones dedicated to specific types of cancer (I still want a dedicated Ballroom, especially to discuss my testicular exams and doctors offices research study with other testicular cancer survivors/patients, which you should read and share widely here!), special programs (like the Movie Club), and more. I don’t want to appear too biased, but the best AppChat occurs on the second Thursday of every month.

The best AppChat on the Stupid Cancer app

From 8:00 to 9:00 pm EST on every second Thursday of the month (previously Tuesdays), you can join the AppChat room of the Stupid Cancer app to participate in the “How to Tell Your Story” chat series, led by this incredible, handsome, witty, and very humble testicular cancer survivor that runs a fantastic blog. (Spoiler - it’s me.)

All cockiness aside, I do really enjoy leading this series. I have a regular group of cats that I try to herd into a coherent conversation about how and why to tell your cancer story, but sometimes even I get caught up in discussing the epicness of cinnamon rolls.

So far, we have covered developing a title, where to begin, the tone and purpose, structuring and finding supports, how to use your story to spread awareness, focusing on your audience, and a brief discussion on promotion. In the next few months, I want to transition into making this more of a writer’s workshop, in which we all gather to share our stories, give and receive critique, and help each other grow as writers.

My pun game is strong everywhere
There’s power in sharing your story. It’s about not letting cancer happen to you… it’s about grabbing cancer by the ball(s) and making it work for you. By joining this club (that you never wished to be a part of), you’ve already taken the first steps towards telling your story.

If you’re interested, I’d love to see you drop by the AppChat room of the Stupid Cancer app and join in the fun. Despite what some of my regulars say, I am actually pretty nice and easygoing. Don’t believe a word they say… unless it’s about my ridiculous overuse of ball puns - that’s all true.

A conversation with Aerial Donovan of the Stupid Cancer App

Beyond my own use of the app, I’ve had a chance to talk with the creators behind all of the features and learn about the 'why' behind the app. While I was at HealtheVoices18 (read about Days 1 & 2 here and about Day 3 and my reflection here), I got to meet with Aerial Donovan, the Program Director of Gryt Health. Among other topics, we discussed future features of the Stupid Cancer app. We discussed the ability to filter users, since right now the only way to see matches is by changing your cancer type. They also have more avatar customizations coming out shortly, and I’m hoping for a spiky look as an option. I’m looking forward to these and other features and can’t wait until it rolls out.

But the upcoming features of the Stupid Cancer app weren’t was struck me most - it was the passion in which Aerial spoke about the app and how it clearly was reflected in the entire Gryt Health team.

One feature I inquired about was the ability to send pictures in the main chat room, since I thought this might help with facilitating a chat by posting graphics of the questions. She understood my request and then shared how hard the team has been debating whether or not to allow pictures in the main chat room (they are allowed in individual messages). In my mind, I couldn’t understand why this was such a big issue.

But then Aerial dropped a truth bomb that made it all clear. The main chat room is where most people get their feet wet. There’s a sacredness to being anonymous. While I am super on the ball when it comes to talking about my cancer experience, this may not be everyone’s decision. Preserving a space where you can just be an avatar makes it a safe place to be Justin B. as opposed to Justin Birckbichler, King of the Ball Puns. Once you feel secure and welcome in the community, you can branch out into DMs and share as many pics as you want with your newfound friends.

That single anecdote really illustrated how much integrity Gryt Health has behind the scenes. They are truly a great company of many extraordinary individuals, and I am proud to say I am not receiving any compensation in saying this (aside from a cool hat and shirt, but that’s since I’m an Uber Ambassador - it’s a real thing!). Thank you, Gryt, for making such an awesome place in the Stupid Cancer app, and I can’t wait to write the eventual third edition of this post...

And by then, I fully expect the Ballroom to be 100% operational for those of us who are operating with 50% of the standard amount of testicles.

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A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version

Tuesday, June 5, 2018

PCL31: What's the Deal With Testicular Exams at the Doctors? A Research Study

We Asked 550 Men, “Do Testicular Exams Happen at Your Annual Physical?” Survey Says...

About 51 percent of men said their doctor physically examined their testicles, while 42 percent said they did not have an exam done, and seven percent could not remember. (I feel like this is something most people would remember, but hey - to each their own.)

 Click for a larger image or to download and share.
While those figures are dismal, responses to the next two survey questions get worse. 78 percent of men reported that their doctor did not teach them how to do a testicular self-exam, and six percent said that they didn’t remember, which is effectively a no in my book. Similarly, only 11 percent said their doctor told them how frequently to do a self-exam.

Of the 550 respondents, 87 percent of the men were in the 15-50 years old range. This is great, since 50 percent of testicular cancer cases occur in men ages 15-44. The remaining 13 percent were either above 51 or below 14.

Thirteen respondents reported that they had been diagnosed with testicular cancer at some point in their lives, which is slightly higher than the average of 1 in 250 men who will develop testicular cancer in their lifetime. This may be due to the fact that some of my social media postings about the survey were seen by fellow survivors.

In the survey, there was an optional, open-ended section where people could share their own comments. These were some of the more interesting ones:
“Never had an exam by a doctor and I am 60.”

“I haven’t had the doctor warn about testicular cancer or been told to do self exams since the age of 12....” (This respondent was in the 21-30 years old range.) 
“I have since asked my GP for a physical and he downplayed its importance, declining to do one as I am young and it's probably not necessary.” (This respondent was also in the 21-30 years old range, also known as the high risk age range.) 
“I was told I was no longer in the high risk age range and didn't need a testicular exam.” (This respondent was in the 31-40 years old range, which is still considered high risk.) 
“I've had a physical every year for the past 9 years and only once has a doctor done a testicular exam on me. The last visit was with a female nurse practitioner and she apparently didn't want to get that personal. She simply asked, ‘Are you having any problems with your male parts?’” 
“I just turned 40 this year and have only had my testicles examined two times in my entire life. Once was for a sports physical in high school and [I didn’t receive one] again until 2015 when I was mentioning testicular atrophy/shrinkage. I just had my physical for 2018 and my (male) physician was actually embarrassed when discussing men's health issues and asked if we could skip the testicle examination. This was at freaking Cornell in NYC.”
For a full breakdown (including each question by age range, which shows a trend of less positive results as men age) and further analysis, click here to view more information.

Administering the testicular exam study and reactions from men

To learn more about the development and backstory to why I did this study, check out this piece I wrote for Cure.

Getting the data I just presented above was no easy task. It required a lot of creativity, support and visibility, and I knew I needed to get other health advocates and organizations involved to collect the minimum 500 responses I desired. Big thank you to I Had Cancer, CACTI, Check 15, We Are Survivors, Cancer Grad, 15-40, Mr. Ballsy, Handled With Care, So Close to Toast, and many others in helping to support this study.

 Click for a larger image or to download and share.
As for me, I personally focused on pushing the survey out on my various social media channels as often as I could. The study even caught the attention of Willie Garson (of White Collar fame) and Tom Green (a fellow testicular cancer survivor).

One of my favorite ways to administer the survey was doing impromptu interviews with random people - and I quite literally mean random people. During Relay for Life and HealtheVoices18, I would walk up to total strangers and ask them if I could administer a survey. Since these events were geared around health awareness, it wasn’t too hard of a sell, but if you know me, I’m no stranger to a challenge, so I went ball to the wall (as they say). Since I endlessly promote the importance of talking about men’s health (and a number of ways to do so), I knew I’d better sack up and do it myself.

I talked to guys at school (not students - don’t fire me), at the gym (talk about an awkward bench press spotting experience), at the grocery store, during my travels in Chicago, and at the airport. Bottom line - if I saw a guy or group of men, I’d approach him/them and say, “Hi! I’m a testicular cancer survivor and I’m running a research study. Can I ask you a few questions?” I may or may not have been forthcoming with the fact that questions about their balls were forthcoming.

Surprisingly, even after the ball questions were dropped (pun fully intended), most guys were totally into it. If they answered no to questions two and three, most of them even asked me how to do a self-exam. Unfortunately, I didn’t think to carry around my pair of fake testicles (and figuring that a physical demonstration would ban me from Wal-Mart... again), so I had to verbally explain it. If you’re unfamiliar with how to do one, scroll to the bottom of this (or any other) post, or check out ABSOT’s self-exam page.

Despite the overwhelming positive response from most guys, about ten men straight up refused to participate. Some of these may have been put off by a random guy approaching them inquiring about their health, but more baffling were the people who said no after their group of five other friends had done it. Frustrating, yes, but also shows that there’s still work to be done with men’s health discussions.

In my opinion, the only man who had a right to say no was the TSA agent, since he probably administers enough exams every day.

How to advocate for testicular exams and testicular health as a patient

While it is important to note that this study was not reviewed by an IRB and should not be considered a formal research study*, I do still feel this data is important. The vast majority of men are not educated about testicular health during their yearly exams.

 Click for a larger image or to download and share.
When you’re at your next physical, ask for a testicular exam. Be outright pushy about it if you need to - afterall, you’re probably paying a copay and/or insurance premiums; might as well get your full money’s worth. Ask that the doctor performs testicular exams on all of his male patients. No man is immune from developing testicular cancer.

If you’re unsure about how to do a self-exam, ask your doctor. Encourage him to discuss it with all men. Share this blog post and results of the study with him.

Be sure to tell your friends, brothers, fathers, and other assorted cast of male characters in your life about this. If doctors and others begin hearing the importance of testicular exams more often, it’ll become second nature to dedicate a decent amount of time to this vital task instead of treating it like a checklist item to gloss over.

As a side note, the study is still open, and you are welcome to participate by clicking on the image below. This post was published in June 2018 and any large modifications to the trends will be added to this post in a few months.

There’s another area of focus to consider here.

One thing that always shocked me was when men apologized to me for answering no to any of the questions about doctors physically examining testicles or discussing the proper technique for self-exams and how often they should be performed.

Click for a larger image or to download and share.
In this study, the only question that respondents have control over is when they most recently attended a physical. 68 percent of men had attended a physical in the past year, showing an eight percent increase compared to findings from a 2016 Cleveland Clinic study. Answering no to any other question is something that lies in the hands of the doctor (or, as in the case of roughly half of the respondents, does not lie in the hands of a doctor).
Beyond sharing with guys who are at risk for testicular cancer, this information needs to get into the hands of medical professionals as well. Now that this study is complete, I plan to reach out to doctors/medical students to share my findings, ask them to change these points, and help spread the practice as widely as possible.

Men deserve to have their health taken seriously. Now that we've cracked open this nut of an investigation, the ball is in your court.

*All information was aggregated and rounded to the nearest whole percentage, which may account for any slight discrepancies in adding up to 100%. For a sample size of 550, it is to be expected that there is a margin of error in the 4.5% range. Since this study was based on men’s recall, there may be some inaccuracies in what occurred versus what was remembered.

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A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version

Friday, May 25, 2018

PCL30: Here We Grow by Paige Davis

Paige Davis's Here We Grow is a Great Guide to Mindfulness for All Affected by Cancer

Often times, when I get DMs from people I’ve never spoken to on Instagram, it’s usually someone who is offering to teach me how to mine for bitcoin, a Russian model who wants to accompany me to various locations in an unobtrusive manner (at least that’s what I think they mean by offering ‘discreet escort services’), or some other sort of spammer unrelated to cancer or testicles.

Luckily, this isn’t always the case. A few weeks ago, I received a DM from Paige Davis, a breast cancer survivor and the author of Here We Grow, a book about mindfulness while fighting cancer. She offered me a free advanced reader copy, and since I love free things, I said yes.

To be perfectly honest, I was skeptical when I read the back cover. I am not one to be into meditation, yoga, or anything of the sort. However, this book was not just a bunch of New Age mumbo jumbo. The following is an excerpt of the five-star review I left on Goodreads:

“I found myself glued to the book from start to finish and realizing more and more that I use a number of mindfulness practices in my own daily life.

Perhaps my favorite thing about this book was that it didn't take an 'either or' approach in regards to medical practice versus alternative healing. Rather, it was about joining the two, which I think is an important message to any cancer patient.”

Beyond that brief snippet, the following three big concepts, along with specific quotes, resonated with me while reading this book.

Take a cancer journey one day at a time

Be sure to snag your own copy!
“I am not naive; this will be a long journey. I want to celebrate the milestones of every step.”

Cancer can seem like a never-ending journey. Sometimes it literally lasts for years. In my case, active treatment lasted just over three months, but it involved chemotherapy nearly every single day. When I finished my first 10 (of 21 treatments) around Christmas 2016, I didn’t view it as “oh crap, I still have 11 to go.” I thought, “Whoa, we’re halfway there…. Whoaaaaa living on a prayer.”

“I just had major surgery; no one is expecting the impossible. I’m not doing this for [her]. I’m doing this for me. I need to know I can do this”

This part reminded me of when I had just had my orchiectomy and was determined to get up and walk a few days later. It was tough, but I had to prove to myself that I could do it… even if it was only walking around upstairs.

“I always assumed that fears were obstacles to be faced head on, but when it comes to situations with no tangible action to take, it’s a harsh reminder that I can’t control everything.”

I like to be in charge, but having testicular cancer definitely takes a lot of that away, in addition to your ball and your hair. I was at the mercy of my caregivers and medical team and had to give up control. It’s hard to accept that, but also a good reminder that letting someone else take the wheel isn’t necessarily a bad thing.

Visualize chemotherapy as a good thing

“This is a love journey, and [he] encourages me to see the chemo as a powerful friend fueled by love and light, doing what it needs to do and then gently leaving my system so new cells can emerge.”

Most people would say chemotherapy sucks and it’s poisoning your body, but both Paige and I would beg to differ. Chemotherapy is a way to heal your body from cancer, albeit a very brutal one. While the side effects can be very overwhelming, Paige advocates to see chemotherapy as a friend rather than an enemy. That being said…

Flashback to when a Flipazoo was
just as good of a nausea deterrent
“Stay ahead of the pain, or in this case, the nausea."

Towards the end of my chemotherapy treatment, my nausea was really bad, to the point where I was best friends with a bucket for five days straight. I learned a valuable lesson then - make the anti-nausea pills a part of your routine. This stuck with me even after active treatment, when I still had latent feelings of quesiness. If you stay ahead of the game, you’ll stop (or at least lessen) the pain or nausea before it even begins.

Accept that change after cancer is inevitable

“While on one level I know that I am irrevocably changed, another part of me wants the change to be minimal and controllable. But these are unrealistic expectations.”

I’ve said this time and time again, but I am far from the same person as I was before testicular cancer, besides lacking my left testicle. I’m more motivated to make up for lost time and accept and embrace that. However, at first, I thought everything was going to go back to my regularly scheduled programming when I returned to work. This wasn’t the case, and if I had this book about a year ago I would have realized that not feeling normal was normal and my new normal would be normal now. Say normal one more time, Justin.

“I shifted my consciousness from one of doing and searching, from a place of fear and angst, to one of being and arriving at a place of stillness, connection, and listening to the deepest part of my soul.”

The changes I made in my life allowed me to stop acting like a dog chasing a ball (a pun I’ve used numerous times in my writing and will never stop) and settle on one purpose (and settle for having one ball). I know at my core, I want to dedicate myself and my work to connecting with other people to spread the good word of testicular cancer.

“The divine experiences of our lives keep propelling us forward on our journey to greater self-awareness and consciousness.”

This line speaks for itself… though I may include ‘testicular cancer awareness’ in addition to ‘self-awareness.’

Want your own copy of Here We Grow?

The easiest, and most guaranteed way is to purchase a copy through Amazon. It released on May 22nd, so if you order today and have Amazon Prime, you’ll have in two days (or less). It's probably available on other retailers too, but Amazon runs my life and I will submit to the overlords.

Finally, a thank you to Paige for giving me the opportunity to read and share my thoughts on this book. I recommend this book to any person touched by cancer (whether it’s as a patient, survivor, caregiver, loved one, or friend - so basically everyone in the world), as this is truly an inspiring and relatable guide for what they may be facing and what's to come. I’m looking forward to the day I write my book and get your feedback on it, though mine will contain a ridiculous amount of ball-themed puns!

Selected quotes from the book were used in this post with the author’s permission.

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A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version

Friday, May 18, 2018

BOB03: Thomas Cantley/Mr. Ballsy - Big Ballsy Comics

Mr. Ballsy Wants to Help You Be on the Ball with Your Testicular Health with his Big Ballsy Comic Series

Welcome to the Band of Ballers! In this series on ABSOT, I’m turning over control to some other ballsy testicular cancer survivors and patients who have inspired me with their work in advocacy and awareness during and after their diagnosis. This month’s feature is all about Thomas Cantley aka Mr. Ballsy, who is the creator of Big Ballsy Comics. Enjoy!

My name is Thomas Cantley AKA Mr. Ballsy. In November 2009, it was not all butterflies and rainbows for me. I was at my ultimate low... and you get the ballsy exclusive. I had drug issues and mental health problems. On top of it all, when I thought things couldn’t get any worse, I got cancer.

The beginning of my testicular cancer journey

I was so ignorant of my own body and unaware of the signs. I had the classic story of waiting too late. I had some abnormalities in my testicle for over a year but I had no health insurance. To add to it, I was homeless at the time and high as a kite. My testicle was hard, but it didn’t hurt and I had no “lump.” Out of nowhere I got horrible pains in my lower abdominal that eventually landed me in the ER. Long story short, a woman found me in a bush, and I ended up in Bellevue Hospital in New York City, where I was later diagnosed with stage 3 testicular cancer. I remember before I went in to surgery my mom said, “Did you know your initials [Thomas Cantley] are same as Testicular Cancer?” That is the last thing I remembered before going under.

Cirque de Ball, anyone?
Nine years ago, public knowledge of testicular cancer was not what it is today. Movember and other organizations were still very new back then. I wanted to be unique with my approach after being diagnosed. There were not many individual advocates putting themselves out there, and I wanted to be one of the first to approach it in a ballsy way with edge. I have pushed two giant balls across two countries, Canada and United States, in hopes of raising awareness for testicular cancer. My goal has been to always inspire men to be more aware of their bodies and be proactive as to not end up like me. My message has always been very vulnerable - I’m committed to stripping down the walls and exposing the men’s health connection with as many people as possible. I connect with so many people all over the world. I will never stop answering my phone and responding on social media to help anyone in need, even if it’s just lending an ear.

Testicular cancer truly changed my life and saved me.

After my diagnosis and surgery, I realized I had a bigger purpose and second chance at life. Someone out there was telling me that it was not my time yet. I knew then that I needed to dedicate my life to helping people who were in same position as me and hopefully prevent anyone else from going through what I did. I waited too long to take care of my health, and I hope by sharing my story, other men don’t make the same mistake.

Nine years later, I’m blessed - I’m all good and cancer free. I was told I wasn’t able to have kids and guess what… I had a son and even got a beautiful wife along with the deal. You never know how life will end up or how it will work out… but it always does. You have the power to dictate your destiny and legacy.

My new testicular cancer awareness mission, Big Ballsy Comics

"By the power of Ballskull..."
I have partnered up with a talented comic book artist Adam Cozart to create a first-of-its-kind, cancer fighting superhero awareness comic series called Big Ballsy Comics. The main character, Mr Ballsy, is based on my persona with my dog Vader along side Lefty, who is my giant left testicle that comes to life.

One of my main characters, Dr. P, is actually based on the Director of Testicular Cancer at John Hopkins Hospital, Phillip Pierorazio. As Dr. P is the leader, he has recruited cancer survivors to form a ballsy team that fights to stop the cancerous queen from populating the world with cancer and taking over. Only the ballsy heroes can stop her. [Editor’s Note: Superheroes and cancer? You know I am all about this!]
My goal for this series is to bring light to a tough subject matter. I also wanted to inspire survivors to channel their diagnosis and use it their advantage and find there unique approach in educating the world about Testicular cancer. Our goal is to distribute internationally at comic conventions, hospitals, and any place that will take it. I figured because of how big the comic world is and the large male demographic, it was a perfect concept to develop to get the message out. We will be launching this summer!

The bottom line is we need to be more proactive as men and listen to our bodies.

It’s not just checking for the symptoms that are obvious. You need to make it a point to really know your man junk and notice if anything’s different. Being in tune with yourself is key, and if anything appears abnormal, get checked. It’s okay to be afraid and even more okay to talk about it. It’s super ballsy to go get yourself checked and not be shy about it.

We have to erase the taboo nature of testicles and the fact that people get uncomfortable about the health of their balls. Even if it’s a scare, it’s better to be on it. You’re more of a man if you man up. Your life is the only one you got... be Ballsy about it.

Be sure to connect with Thomas by visiting him on Twitter (@mrballsy) and on Instagram (@mrballsy) and connect with Big Ballsy Comics on Twitter (@BigBallsyComics) and Instagram (@BigBallsyComics) . Until next time, Carpe Scrotiem!

Know someone (or even yourself!) who is supporting TC awareness and would be willing to share their story? Drop their name, contact, and why they should be featured into this Google Form and I’ll reach out to them and/or you!

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A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version

Monday, May 7, 2018

PCL29: HealtheVoices 2018 - Day 3, Next Year, and My Takeaways

Days One and Two of HealtheVoices18 Were Incredible and There Was Still One More Day.

As I woke up on the final day of HeatheVoices18, I couldn’t help but reflect on the themes of the first two days (read more about days one and two here). While the first day of HealtheVoices18 (a health advocates conference I attended in Chicago in late April 2018) was a marathon of inspirational messages, my theme of day two was split down the middle (much like my scrotum). One thing I’m going to be committing to is a new outlet for ABSOT via video (and you can subscribe to the budding channel here). My mind is already whirling on how this is going to go, but I also recognize I want to slow down and plan it out well first.

Al and me
The other focal point of day two was connection. I spent a lot of time talking and bonding with the cancer advocates who I had met at the pre-conference. Since there were only ten total cancer advocates in the group of 120 advocates, I also spent a decent amount of time connecting with others from other advocacy areas.

I spoke with Al Levin, a mental health advocate about how we can use our experiences as health advocates to conduct research studies, talked with Sabrina Skiles, psoriasis advocate on how we both experience so many misconceptions about our conditions, and learned what schizophrenia is really like (spoiler: nothing like movies and media makes it seem) from a schizophrenia advocate named Rachel Star. Even though we all had different passions and conditions, we all experience many of the same things and could bond over this common link.

After pondering these two separate, yet equally powerful and important lessons, I had a sneaking feeling that day three of HealtheVoices18 would be a third, separate theme - perhaps one of reflection.

Day three of HealtheVoices18

Kyle and me... in the correct position
In the morning of the final day, we heard from Impact Fund recipients, who have done some incredible things, like making their media more accessible or amplifying the underheard voices for their specific advocacy focus with grant money from Janssen. This was followed by a very intense closing message from Kevin Hines, a brain disease advocate. I also got another chance to share my story and mission on the HealtheVoices virtual experience and Facebook Live with another advocate. I’ll never turn down an opportunity to talk balls on camera, and I got to administer my research study survey to the host live, which was super fun, and not that awkward (for me at least)!

As a side note, please consider completing the above mentioned survey, which is embedded just below. It's a total of six questions and part of an extremely important research study I am running about men and testicular exams at the doctor's office. If you don’t have testicles yourself, the direct link to the survey is, so please pass it on to your sons/husbands/boyfriends/uncles/male dogs/etc. (You can also snag a copy of the graphic here).

Suddenly, Caroline Parvis was back up on stage, telling us that it was time to leave for this year. After hugging some new friends and selfies (including a properly posed picture with Kyle… when you see it, you’ll understand), it was time to board the buses to O’Hare. While it was the shortest day of the conference, it gave me some things to think about, especially while I sat in the airport for three hours waiting for my flight.

My plans for Healthevoices next year

I honestly loved every moment. I’ve attended numerous educational conferences, and this was a new experience. Save for the Ship’s Got Balls event, I’ve never been at a health conference. I’ve said this time and time again, but being in a room full of people with common interests and passions like health advocacy is something that cannot be described. While I would never wish to have cancer, I am thankful to have found a place and a tribe to be with.

Next year, I’ll plan on coming back… even if I’m not accepted (only partially kidding)! I’m pretty sure the conference wouldn’t be the same without having two crazy Uniballers together. I know my life has sure been different since my nuts were separated.

On a serious note, I would like to join the Advisory Board or take on a speaking role during a panel discussion during next year’s conference. I would like to speak about men’s health and how we need to do more with it, which would nicely tie into how to speak about under-discussed or “taboo” topics in general. I could alternatively just run a session on how to effectively craft elaborate ball puns - whatever the people want.

A call to action from HealtheVoices18

I realize this blog post is most applicable for health advocates, and the average reader of ABSOT most likely doesn’t fall into that category. Yet, you’re probably not lacking in a pair of balls (or never had any), and you keep coming back, so health advocacy actually is important to you.

You, as a reader, have the power to help advocates. One of the biggest recurring themes through HealtheVoices18 was how to amplify your voice and grow your audience. This is where you come in.

See a health advocate trying to spread their message of awareness and activism? Help them. Share. Retweet. Tag friends who would benefit from hearing their message. If you know a testicular cancer advocate who is doing an important research study, share the link (hint, hint!)

All of these people work very hard for
health advocacy. Show them your support. 
Many advocates do this as either a labor of love or an unpaid mission on top of a full time job. You wouldn't think twice about sharing a cute cat video or some #foodporn, so don’t hesitate to share a more important and noble message (though cat videos are a true calling).

At times, I personally have felt like my messages are not being heard. Honestly, it hurts. I put a ton of work into something that I feel extremely passionate about, and it is frustrating when a video of a cat doing the dab goes viral over a piece about the importance of April as testicular cancer awareness month.

But I need to remember the message of one of our participants of open mic night. He asked us each to hold up one finger. He said that if you reach just one person, then your mission is worth it. To those advocates that I met at HealtheVoices18 (and the ones I have not had the opportunity to meet yet), continue to do what you do. It is important and your efforts matter.

My final takeaways from HealtheVoices18

On a personal level, I struggled at points throughout HealtheVoices18 because I do not necessarily see myself as a patient advocate and more as a testicular cancer activist. I will never turn down giving support to a testicular cancer patient/survivor if he reaches out to me, but I don’t do a lot of active outreach to those who are diagnosed. The main goal of ABSOT is to promote awareness and conversation around testicular cancer and men's health as a whole.

I was glad to see the support of
United as I entered O'Hare
At times, I felt I was not doing enough because I am not necessarily focused on the needs of the patients and survivors. However, I do still feel that my mission is important, and even though my angle is different, I still had a number of takeaways from HealtheVoices18. Perhaps the biggest one is diving into video production and creation of a dedicated YouTube channel (another shameless plug - subscribe here! More content will be coming over the summer and fall). Upon further reflection, I do plan to have a portion of the YouTube channel geared directly to recently diagnosed and current fighters, with an overall theme of actionable awareness.

To those of you who I met over the the weekend, and especially the program advisors and organizers at Janssen, thank you very much for your continued dedication and work for putting on this conference. I hope to keep in contact with all of you as we help each other to support our missions. This was truly a once-in-a-lifetime experience, but I hope it is just the first time. It's not enough for this to be a one-time thing...

But as I told literally anyone who would listen, it is 100% acceptable to have just one ball.

Disclosure: My travel expenses were paid for by Janssen Global Services, LLC. All thoughts and opinions expressed on social media or this blog are fully my own, honest thoughts, and not reflective of those held by Janssen… Especially the ball jokes. Those are all mine.

Click the ABSOT logo below to subscribe to the mailing list for the new blog posts, latest testicular cancer information, and self exam reminders!

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A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version

Monday, April 30, 2018

PCL28: HealtheVoices18 - The Pre-Conference, Day 1, and Day 2

I Was One of the Selected Advocates for HealtheVoices18, a Conference for Online Health Advocates

A few months ago, I saw an Instagram post from my fellow Uniballer, Kyle Smith of Check 15 (and future Band of Ballers contributor), that mentioned that he was on the Advisory Board of HealtheVoices18. He also shared an application link and urged people to apply. I filmed my video application and was about to hit submit when I realized I had made a vital mistake.

Even shiny balls need to be checked.
I repeatedly referred to the conference as “Heal The Voices”… And it's pronounced “Health eVoices.” I should have realized that it's a conference for online health advocates, so eVoices makes sense. 53 takes later, my final draft was submitted. Despite this hiccup, I was accepted, and arrangements were made for traveling to Chicago in late April 2018 for the three day conference.

The day before HealtheVoices18

When I arrived in Chicago, I grabbed a late night snack with Kyle, marking the first time the two Uniballers would form one complete sack. We had to ensure he sat on the left side of the table, while I manned the right side.

After a day spent in hardcore tourist mode (that included administering more surveys and a visit to the Chicago Bean, which I of course used to demonstrate a self-exam, meeting up with Aerial from the Stupid Cancer app, and dinner with my friend, Chris), we had one session on Thursday, a day ahead of the official start of HealtheVoices18.

As a side note, please consider completing the above mentioned survey, which is embedded just below. It's a total of six questions and part of an extremely important research study I am running about men and testicular exams at the doctor's office. If you don’t have testicles yourself, the direct link to the survey is, so please pass it on to your sons/husbands/boyfriends/uncles/male dogs/etc. (You can also snag a copy of the graphic here).

Thanks in advance! Back to HealtheVoices18...

A number of cancer advocates and I were invited to be an advisory panel for This was my first experience being in a room full of cancer advocates, and I have got to say, I loved it. Instant bonds were formed, especially while sharing why we all started advocating. I noticed immediately that we are all passionate about what we do, and I commend the team for listening to our honest input and sometimes critical feedback. I look forward to seeing how they continue to develop and improve the website.

That evening, I did manage to see Avengers: Infinity War. No spoilers, but hot damn it set the bar early for the rest of the weekend. (Author’s Note: To the best of my knowledge, this is the first swear word on ABSOT. Cancer never made me curse... But Thanos sure did.)

Day one of HealtheVoices18 begins

With the woman behind it all!
The next morning, HealtheVoices18 began with opening remarks from Caroline Pavis, who works in Corporate Communications for Johnson & Johnson, the parent company of Janssen (the company running the conference). According to her, there were 400+ applicants for the conference and 122 total advocates (representing 40 health communities) were accepted, with 52% being new attendees and 48% being returning veterans. She also stated the theme for HealtheVoices18: “Growing Stronger Together.”

Next, Kerri Sparling, a diabetes advocate, took the stage for the opening keynote. While her condition is far different than mine, I did find myself connecting with her on numerous levels, and not just due to our common shared interests: an appreciation for humor and cat pictures. She told us her story of having to “follow the rules” of diabetes (check your blood sugar regularly, watch what you eat, and more) when she was younger, which reminded me that I had to eat and drink even when I didn’t want to during chemo. She closed her keynote by asking us to remember why we started advocating and to use our work to amplify others’ stories, which solidified my dedication to the Band of Ballers series on ABSOT.

Learning about the resilience and importance of health advocates

The next HealtheVoices18 session launched with attendees developing a one-word definition of resilience. We also heard about the benefits and consequences of being (or not being) resilient. Janssen’s researchers shared their definition: “Acquired ability to regularly recover, adapt, and grow from stress,” and defined three levels of stress - normal stress (in my case, my teaching job, being an adult), training stress (advocating with new projects, learning new homeowner/technology things), and excessive stress (taking too much on at once).

This was followed with a panel discussion from five different advocates, many of whom had attended previous HealtheVoices conferences and all represented a different advocacy domain. These are their quotes that stood out to me:
Kenzie - “Keep showing up.”
Kate - “This is just another day… It’ll be ok tomorrow.” “Make your illness work for you.”
Jen - “Kids live in the moment - it’s such a great lesson.”
Hetlena - “Have a bad day for a few minutes. Put it on a timer and move on.” “Turn a negative into a positive.”
John - “The difference between being and having is really at the core of the story. I’m not HIV and HIV is not me. I’m John.” 
After a fantastic dinner, Catherine Bright, President of Infectious Diseases for Janssen, took the stage to share her own experiences of how health advocates helped her daughter. Her final message reminded us that “there are always families out there who are wanting and needing to hear your voice.”

Our last speaker for the evening was Karen Duffy, a chronic pain advocate, former MTV VJ, and actress (mainly of Dumb and Dumber fame). Again, while her condition does not involve cancer or testicles (the latter would be pretty hard), I found many parallels to my own life. She was at the top of her game when she developed her condition, just as I was in 2016. She decided to become an advocate just because she could - she had the skills to serve and was committed to using them in a positive way. As she said, “Pain is inevitable, but suffering is optional. I didn’t want a bad day with my disease to trick me into thinking that I had a bad life.”

Day two of HealtheVoices18 begins

The first session of the day focused on Twitter. While I didn’t really learn anything inherently new about growing an audience on Twitter, I was affirmed that many of the things that I already do are considered best practice. Some mental health advocates asked about Twitter would be doing about cyberbullying and ways to stop it, but they didn’t have many concrete steps in place. I also inquired about the verification process and discounted/free Tweet promotions, which would help spread more influence for health advocates, but unfortunately, they had no real answers. Even though their answers were disappointing, to be honest, I hope our voices were heard and I will be following up over the next few months.

A new avenue of health advocacy for ABSOT

Jen from Booby and the Beast.
Her pun game instantly earned her my respect.
However, the next two sessions about video production, led by Sarah Snow of Wisdo, and YouTube sessions, by Sarah Healy and Sonalika Reddi of YouTube, were amazing and got my wheels spinning. While ABSOT started as a blog, it’s since grown into the realms of Instagram, Facebook, and Twitter, but I haven’t really tackled YouTube.

After learning various tips on how to create videos and grow an audience, I’ve decided that I will be launching the A Ballsy Sense of Tumor YouTube channel, which you can check out and subscribe to here. In the interest of full disclosure, I was so excited about this new venture that I worked on some changes during the next two sessions. The sessions had some valuable information, but I was just so inspired that I had to multitask.

To be honest, I am a bit nervous and anxious about this endeavor. While I am hilarious and charismatic in person (not to mention incredibly modest and humble), that doesn’t always show through in video. I also know I do better when I just let it free flow instead of scripting out what to say. Perhaps a storyboard and major bullet points format will work best for me when planning out my content. It will definitely be a learning curve, but I am excited to start planning my first videos, for shooting, editing, and publishing over the summer/early fall.

Unwinding and sharing stories at HealtheVoices18

Our final group session was led by Mike Veny, HealthCentral’s Mental Health Social Ambassador. Since mental health has been a recent focus of mine, I was very interested in how he shared his definition of mental health: how you respond to life through thoughts, feelings, and behavior. Only behavior can be observed by an outside observer, while the first two are internal. To help us learn a technique that has helped him, he led us in some rhythmic drumming exercises, which were definitely fun. In true Uniballer fashion, I chose a single maraca.

Afterwards, representatives from Wisdo, a video app for sharing and learning from the collective wisdom and challenges of others, interviewed me for eventual sharing on their platform. It was nice to share my story, and the video producer said I had her in a combination of tears and silent laughter in the back of the room. The videographer was another fellow Uniballer, but he was born that way, so I’m not sure which one of us won… but we each had one!

Later that evening, we had an open mic night. I had prepared a poem about my journey in mission, in the style of Dr. Seuss. The video is embedded above, and I think I did a pretty good job. I only dropped the ball on one line, but totally mocked myself on it. Self-deprecating humor is only second to my ball puns.

Disclosure: My travel expenses were paid for by Janssen Global Services, LLC. All thoughts and opinions expressed on social media or this blog are fully my own, honest thoughts, and not reflective of those held by Janssen… Especially the ball jokes. Those are all mine.

Click the ABSOT logo below to subscribe to the mailing list for the new blog posts, latest testicular cancer information, and self exam reminders!

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A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version

Tuesday, April 24, 2018

PCL27: Why I Relay

I’ve Never Attended Relay For Life, and My First Was as Team Captain and a Cancer Survivor. It’s More Than Just the Laps and the Fundraising.

My little sister, who is nearly as passionate about cancer awareness as I am, has been part of numerous Relay for Life events, and she’s not even 18 yet.

My mom/caregiver and me.
Her being there really meant a lot.
On the other hand, I’m 26 and had never attended one, despite cancer being a part of my life even before my diagnosis (remember this point - I’ll come back to it later). I knew Relay for Life included a ton of walking, raising funds for the American Cancer Society, and raising cancer awareness, but otherwise I didn’t know much at all.

Earlier this fall, I received an all-staff email from the team captain of the Relay for Life team at my school. She wanted to take a break this year and needed someone to be the new captain. I volunteered, since someone who has never attended an event is most qualified to become the captain (obviously). To be fair, I do only have one ball, which is a qualification, I believe.

I could fill this post about attending team captain meetings to get ready for the big event on April 21, 2018 at Massaponax High School. I could talk about how many steps I took (over 20,000 for a total of about 9.5 miles, according to my FitBit - yet still a far cry from what Rob Harvey will be attempting in a few months). I could share about the escape room my team led twice (with the record being 11 minutes). I could captivate you with the tale about how I won a grill in a brutal silent auction that came down to a blind bid against another team captain, which ended in a tie but my opponent let me have it “since I am a survivor.”

But this isn’t what Relay for Life is all about.

Relay For Life is to celebrate cancer survivors

The first lap for Relay for Life is the survivor and caregiver lap. Each survivor’s name is called individually and they are presented with a balloon. Their caregiver is invited to join them on the lap as they kick of the twelve hours of walking around the track.

My grill "opponent"
Having a last name like Birckbichler ensures two things - it will be one of the first called alphabetically and it absolutely will be butchered in pronunciation every single time. When “Justin Brickbirchlir” was called, I wasn’t even near the track, since I was looking for my survivor sash, which I couldn’t find in my cancer survivor gift bag.

Each survivor is given a white sash that proclaims their survivor status. I thought I had overlooked mine in my bag, but upon closer inspection, I realized my bag was lacking one. (I do also realize this also describes my scrotum.) Resigned to not having a sash, I took my lap, as my mom joined me.

While I was taking the cancer survivor lap, I noticed one guy was walking alone. I joined up with him and asked him about his experiences. He said he also had testicular cancer but didn’t need further treatment beyond his orchiectomy. He shared that he didn’t feel like he should have been in that survivor lap, but in my opinion, he had every right to be there. Not having chemo doesn’t make his experience any less significant.

After completing the lap, I was determined to get my sash. I never received my letterman’s jacket I assumed I’d be getting on remission day, so I wanted my sash. I went up to the Survivor Team Lead Coordinator, Tammy, and spoke with her. She’s an awesome woman and she got me my sash. I also decided that I’m not much of a sash guy, but it perfectly fit as a headband. Party on, Garth.

One of the other special Relay for Life events that Tammy organized for the cancer survivors was a special luncheon for survivors and caregivers. It was completely free and was delicious, but it was more than just a meal. There’s a level of camaraderie among cancer survivors that I couldn’t possibly capture in a blog post. Being in a tent with a bunch of fellow survivors was uplifting. We had all defied the odds and showed cancer who was willing to keep surviving.

Tammy also arranged for each cancer survivor to receive a free gift. I had donated a few books I had bought when I was determined to regain the ability to read post-chemo brain but had never gotten around to reading. I wrote printed labels (since I have terrible handwriting) with an inscription in each one. I included my contact information and hope to hear from whomever picked these books.

My new testicular cancer buddy
(both of us sans sashes)
I personally selected a nice assortment of pencils that were make from tree branches, which will be a welcome addition to my workshop. Again, it wasn’t the gift that mattered - it was the dedication that Tammy put forth. She said it was her ninth year doing it, and she truly made every cancer survivor feel like a rock star, which I guess makes me Rod Stewart.

Some Guys Have All The Luck, but after lunch, I couldn’t stop thinking about the conversation with my new testicular cancer friend. While we were talking during that first lap, I learned he basically said, “I Don’t Want to Talk Talk About It” at first and put off going to the doctor for a while. I guess he realized if he wanted to stay Forever Young, he had to make a call to nurse Maggie May. This discussion sparked a mission for the rest of the day.

Relay For Life is to fight back against cancer

My latest project with ABSOT is a research study about men and their experiences with testicular exams at the doctor’s office. At this point, I’m going to embed the form and ask you to fill it out. Seriously - please do. It takes less than a minute to complete, and when you’re done, pass it on.

If you don’t have testicles yourself, the direct link to the survey is, so please pass it on to your sons/husbands/boyfriends/uncles/male dogs/etc. (You can also snag a copy of the graphic here).

Now that you’ve completed (and/or shared) the survey, we can keep talking about Relay for Life. Knowing that I had my cool survivor bandana on and the event was all about cancer awareness, I decided I would take The Blunt Approach from “Six Ways to Talk About Testicles” and give the survey to literally any guy I saw along the way. I probably talked with well over fifty guys, and their answers to the survey all varied. I’m not ready to release the results yet (seriously, go share it so we can have a solid sample size), but it’s definitely eye opening.

"Excuse me sir, do you have a
moment to talk about
your testicles?"
'Let me see if my wife will let me.'
I talked to all sorts of males - from high school students to a Vietnam war veteran. The Sheriff's Department had a team, and I interviewed each of them in turn. I also administered the survey to the Miss Relay contestants, who are men who dress up in drag as another fundraiser.

Out of all the people I approached, only two guys outright said that they didn’t want to participate. I didn’t press the issue, and despite that, I was happy to see that the vast majority of the men were open to talking about testicular cancer and self-exams. Shows me that things are slowly changing for the better, which is my goal in April, the designated month for testicular cancer awareness.

If a man said he didn’t know how to do a self-exam or how frequently to do one, I told them how to do it and to repeat monthly, and sealed the deal with an ABSOT bracelet. I didn’t have my fake testicles with me, but one person had two Dum-Dum lollipops, and, well, one thing led to another. Just add it to the growing list of foods I have reimagined as testicles.

I’d say that I definitely grabbed the moment by the ball(s) and used Relay for Life to spread some awareness about testicular cancer.

Relay For Life is to remember the fallen

When it comes to cancer, it’s not just all about celebrating the survivors and talking about balls. Unfortunately, there is a somber side - those who we lost to cancer. A big part of Relay for Life is the luminary ceremony. I didn’t purchase a “In Honor Of Justin Birckbichler” bag and I dissuaded others from doing so, since I am still here, and I wanted any money to go to remembering those who are no longer with us. (My mom did end up suggesting a bag to remember Lefty.)

Grandpa's bag
As I’ve said numerous times, my Grandpa was the first real experience I’ve had with cancer and my first close family member who passed away. He’s a big part of motivation for what I do with ABSOT and his mantra of “Just tell me what I need to do and I’ll do it” was what kept me going during chemotherapy. When I was buying luminary bags for other colleagues, I purchased one for him too. Later that evening, I set it out on the track along with the hundreds of others, and all the participants began the silent remembrance lap.

While other Relay for Life laps were fun and filled with laughter and pumped up music (though there was a distinct lack of TayTay), this lap was quiet, with soft music playing in the background. My mom and I walked the lap together and went we returned back to our area, we stood in front of Grandpa’s bag, just staring at it.

“I miss him every day,” I said as I wrapped my mom in a hug.

“I do, too. He’d be so proud of you,” she whispered back.

We stood there for a few more moments and I reflected on all the lessons he taught me. I know how to tie a tie because of him. I can golf (albeit, not well) because of him. I have a stronger resolve because of him. I remember calling him on the phone driving to and from college, just to talk. I truly miss him every day. Despite all the good I try to do with cancer awareness and the positive changes in my life I’ve made since facing my own battle, I would trade all that away in a heartbeat if I could just have one more moment with him.

As I sit here drafting this on the verge of tears (and by verge, I mean there are some welling up), I can’t help but think of the scrolling screen of names that followed the silent lap. Sometimes, there were multiple different first names that shared one unique family name. I can’t even begin to imagine how they feel, losing so many to cancer.

My future plans with Relay For Life

At the end of the day, both literally and metaphorically, I was not interested in the amount of money that was donated at Relay for Life. While the American Cancer Society does a lot of good with the money it raises, there’s a picture that’s bigger than the research, patient support services, and funding. To me, it’s about celebrating the cancer survivors, fighting back against cancer and remembering the fallen.

This was actually my mom's idea...
She's learning the way of the ABSOT
Next year, I’m not sure if I want to be team captain again. The woman I “took over” for did an incredible job being the de facto team captain, and I think my time could be better spent elsewhere.

I want to help with the survivor team. As I went on and on about Tammy in the beginning, I couldn’t help but think about how it would be great to give back more. I plan to talk to her at our wrap up meeting and see how I can get more involved.

To those who have been impacted by cancer, check out where the nearest Relay for Life is for you. It’s more than just raising money and walking laps… it’s truly an experience.

Click the ABSOT logo below to subscribe to the mailing list for the new blog posts, latest testicular cancer information, and self exam reminders!

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A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version