Tuesday, November 20, 2018

PCL41: Two Years of Writing... and Still Only One Ball

A Look Back At The First Two Years Of Testicular Cancer Awareness and How It Has Changed My Life

In addition to November being No Shave November and the month I began chemotherapy in 2016, it’s also the month I began writing about my cancer journey. ABSOT was officially launched towards the end of the month and since then, I have published over 100 pieces here, in addition to about 120 other guest posts/interviews on other sites.

Last year around this time, I wrote about the story behind the creation and original intention of ABSOT. The first plan was to begin developing a comprehensive resource for someone facing testicular cancer, as it was something I could not easily find when I was initially diagnosed. Since the active treatment part of my testicular cancer journey wrapped up almost two years ago, I haven’t added new pieces in this regard.

One recent email
However, I do frequently receive emails from new patients who find my blog. It’s nice to see that the resource I wish I had is helping others and I can point them to one of my posts about what to expect in their coming journey, whether they’re wondering if they should bank sperm for the future, how hair loss will go, or if nausea ever proves to be an issue.

Despite not having an active testicular cancer experience to write about, I still continue to publish pieces frequently

These pieces are generally focused on two of the other goals of ABSOT - sharing an honest look about what it means to be a cancer survivor and broadening lines of dialogues about men’s health as a whole. These are two vital parts of my post-cancer life (so much so that the current series on ABSOT is literally called “Post-Cancer Life” and form the bulk of my writing these days).

The Band of Ballers class of 2018
Beyond the PCL series, I have also opened up ABSOT to share the voice of others through the Band of Ballers series. This series was launched in April 2018 and features other testicular cancer patients, survivors, and advocates who have grabbed their life by the ball(s) to spread awareness about this disease. I get to play more of an editor/producer role in these pieces and it is completely awe-inspiring to see other men sack up to share their stories so openly in hopes of destigmatizing men’s health.

In the future, I hope to continue this series and bring in advocates for other men’s health conditions, such as when John Falk shared his story with male breast cancer. At the end of the day, I’m still just one man, with one testicle, and one blog, but by giving a platform to other men to share their health journeys, we can get the ball rolling on changing this narrative.

In addition to writing on ABSOT, I became a regular contributor to CURE Voices in March 2018

CURE is the largest publication for patients, survivors and caregivers in the US. Knowing this, I was honored when they reached out to bring me on board. Perhaps my favorite thing about having CURE as an additional place to write is that I can keep ABSOT’s focus on men’s health and post more generalized cancer pieces on CURE. The community on the CURE Voices forums truly “get” what I’m saying in these pieces, so it’s great to have another place to share my random rambling thoughts.

While the first few posts on CURE were remixed versions of my original journey and posts from ABSOT, I also regularly produce exclusive pieces that do not appear here. Since I did a top twelve list last year of my favorite ABSOT posts, I felt it was just as important to do one this year for CURE, since they have become such an integral part of my writing process. The list is presented in descending order.

Cartoon Justin smiles

Honorable mentions:

  1. Conquering the Spartan Sprint After Cancer - About a month before my diagnosis in 2016, I “ran” (read: walked) the Spartan Sprint. Just a few weeks ago, I did significantly better.
  2. What Cancer Survivor Day Means to a Testicular Cancer Survivor - June 3, 2018 was Cancer Survivor Day. This is what it means to me.
  3. Another Spring, Another Worry, Another 'Balltrasound' - Fears of recurrence is a constant struggle. However, I’m learning to handle it better.
  4. But First... Let Me Take a Cancer Selfie - Beyond the blog, social media is how I raise awareness. 
  5. The Dark Side of Cancer and Social Media - As a continuation of above, this is what I see as a troubling misuse of social media in the cancer community.
  6. Pulling the Cancer Card - It’s a powerful way to get what you want, but when is too far?
  7. Why October Scares Me - October is diagnosis month for me. Sometimes, thinking back on it is more terrifying than any Halloween movie.
  8. Chemo Brain Returns? - Chemo brain (discussed more in depth in this feature I did for CURE Today) is a real thing, and sometimes I wonder if it’s truly gone.
  9. How Cancer Has Taught Me to Just Say No - It may sound selfish, but after facing cancer, I spend more time saying no to things that just don’t appeal to me.
  10. ‘I'm Not an Inspiration,' Says a Testicular Cancer Survivor - Of all the words that have been used to describe me, inspiration is among my least favorite.

Since this is my second year of writing, I figure I’d double up and continue with two lists… even though I no longer have two testicles

Without further ado, I present the second annual top ten ABSOT posts of 2017-2018, again in descending order. *Please note I chose to put both lists in descending order because an undescended testicle is a factor for an elevated risk for testicular cancer.

Honorable Mention:
  1. My Definition of Surviving - One Year Later - What surviving cancer truly means to me, as I reflect on one year of remission
  2. Looking for Clarity - A piece where I open up about my mental health journey with depression, post cancer
  3. Progress with Prozac - A continuation of the piece above, detailing how antidepressants helped me overcome depression after cancer 
  4. A Ballsy Challenge - Five easy ways to make the most of Testicular Cancer Awareness Month and beyond
  5. A Research Study By CACTI - My analysis of the spring 2018 CACTI study about men’s perceptions of testicular cancer 
  6. Every Man Needs a Urologist - An eye-opening interview with Dr. Modlin, of the Cleveland Clinic about their third annual MENtion It survey
  7. What's the Deal With Testicular Exams at the Doctors? A Research Study - An investigation I did about testicular exams at doctors office. Not to spoil it, but about 78% of men reported that they weren’t taught how to do a self-exam
  8. Making Testicular Self-Exams Standard Practice in Virginia's High Schools - The achievement I am most proud of with my awareness work - the creation of a PSA for high school students 
  9. An Open Letter to Tim Howard and Cremo - My response to Tim Howard and Cremo Company misusing the No Shave November hashtag to promote their products instead of men’s health
  10. Eight Reasons Why One Ball is Better Than Two - This post dives deep into the advantages of having only one testicle and is a peak-ABSOT post, blending humor and education AKA my new favorite pair

On a personal level, writing is my therapy after facing testicular cancer

I’ve touched on this in last year’s post, but I can never understate the importance of finding an outlet for dealing with cancer. For me, I have a hard time verbally speaking my feelings out loud. I can never seem to find the spoken words to reflect what I am trying to say, but I don’t have any problem writing them out. When I am feeling down, I write. When I am feeling proud, I write. It gives me an outlet and helps me process.

By having written so much over the past two years, I have a more or less complete record of my life and how far I’ve come. Every few months, I go back to reread the pieces to really reflect on what an incredible journey I’ve been on since October 2016. I don’t have any plans to stop, as this is a passion that truly brings me joy and helps me finding purpose and meaning in life.

Here’s to having a ball as we begin looking forward to a great third year of writing about balls.

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

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


Don't forget to follow and share ABSOT on social media by clicking the icons below!

ABSOT is endorsed by the Laughter Arts and Sciences Foundation, a registered 501.c.3 charity. To make a tax-deductible contribution to help help continue ABSOT's work with testicular cancer awareness and men's health, click the image below.

Monday, November 12, 2018

PCL40: From Traditional to Transformative - Manhood: The Bare Reality

“Feminism has helped women to re-interpret womanhood and break down feminine stereotypes. I don’t feel this has happened enough for men.” -- Laura Dodsworth in Manhood: The Bare Reality

“Breasts and penises are not direct counterparts but both embody ideas of femininity and masculinity, womanhood and manhood, and offer intimate windows into our emotional and psychological worlds.”
Thus opens Manhood: The Bare Reality by Laura Dodsworth. This book is a sequel of sorts to The Bare Reality, the original book in the series where 100 women had their breasts photographed and shared what it meant to them to be a woman. In this edition, penises took the stage as men shared their stories of what manhood meant to them (including Band of Ballers alumni Matt Wakefield).

In why they sacked up, stripped down, and answered the call of duty, two men had this to say:
"If women are going to stand there and expose themselves in that open way, then to be one of the men who is willing to do that is a really positive thing."
""Penises are so linked to our psyche. Language says it all, we call a penis our 'manhood.'"
As I read the book, I saw many interesting things, and I’m not even referring to the multitude of penises (there is also a strong narrative of what word to use when referring to the penis as throughout the book; I settled for the anatomical term in this piece).

Throughout the 300 pages, major themes arose about the concept of manhood and masculinity. These themes mainly revolved around the differences between “traditional manhood” and “transformational manhood” - not terms used in the book, but I like alliteration so that’s what we’re going with.

These selected quotes (in italics and used with permission of publisher) were moments that made me think about my own experiences growing up as a boy, adolescent, and man and how we can shape the future of our sex.

The concept of “traditional manhood”

"We're taught that men must work hard, provide, be the breadwinner, be strong emotionally and physically, and that's it really." 
"The classic social pressures mean that it can feel very shameful for a boy to... be perceived as weak." 
“Masculinity says you don't talk about stuff."
These and many similar quotes were woven throughout the book. Throughout history, men were supposed to keep their emotions in and just provide for the family. This narrative must change. Not belabor the point, but I’m calling this viewpoint of manhood “traditional” for a reason.

How “traditional manhood” impacted men’s health

"As a small child, you were told, 'Big boys don't cry.' I think this is why men sometimes have a higher incidence of some of the serious illnesses because we don't like to complain about being ill."
"The conventional wisdom is that men don't like to talk about things, and that they are suffering and even dying because they don't talk about this part of their body."
As this is a driving force and predominant theme behind the mission of ABSOT, these lines aren’t new information. Nor are these notions just the musings of random men. The MENtion It survey from the Cleveland Clinic has consistently shown over the past three years that men just choose not to open up about their health.

However, what is most revealing about these quotes delves into why men might keep things close to their chest. Personally, I know I heard time and time again while growing up that “big boys don’t cry” and because of that stereotype, I was very reluctant to call my doctor when I discovered a lump during my monthly self-exam. We need to open up lines of communication to dispel any sort of shame or stigma attached to freely discussing men’s health.

Here are a variety of ways to talk about men’s health in a natural manner, ranging from using current events to witty remarks to simply grabbing the conversation by the ball and being blunt about this crucial topic.

How “traditional men” interact with other “traditional men”

"I can't talk to any of my male friends about anything meaningful emotionally or psychologically.”
"My men friends and I don't have the sort of friendships where we talk about personal things. I never really knew how to make it different"
Prior to cancer, the majority of dialogue with my close male friends included random bantering, ‘roasting’ each other, and discussing movies, but nothing of real substance. I think this really aligns with what “traditional manhood” is all about - keeping deep thoughts and feeling to yourself. Since my experiences with testicular cancer, many of my conversations with my friends have delved into more serious topics, including taking care of their health and taking a real look at the future.

The second quote in this section bemoans that that guy didn’t know how to make it different. In my opinion, he’s halfway there. Recognizing that a disparity exists is the first step, and it must be followed by concrete action steps to fix this. Be that guy to take the first step and ask about personal things with your buddies. Eventually, it will feel less awkward.

Transitioning from “traditional manhood” to “transformational manhood”

"As men, we are told to be have a cool, calm exterior, never cry, brush things off. But you need to have emotion."
"I think as a boy growing up, to be a man was to be strong, to be hard, to not cry. And then I was told that wasn't OK, that I should be softer."
"The old way of bringing up boys, whereby you are not really supposed to express feelings much, ends up with men doing odd things, and those energies can come out in other ways which are unhealthy. Talking and expression are a big part of healing."
"When I was younger, I thought being a man was about being buff. Now it's about being a good person and giving to society"
I’m not going to weigh in too much on these quotes since they do an excellent job of speaking for themselves. While my commentary is absent, I made it a point to include them here to show that many many are aware of the dichotomy of being raised in the “traditional manhood” eras as we enter into the “transformational manhood” time.

The concept of “transformational manhood”

"Being a man means being loving, kind, compassionate, being there for your friends and loved ones"
"I feel that when men come together and talk we can integrate our emotions and then be true in our actions."
This is the heart and soul of the book. While there were a few quotes that reinforces “traditional manhood” concepts, they were shared by men who had their penises photographed a few minutes earlier and were sharing some of their deepest and darkest moments in their lives. (As I was typing this, I really had to wonder - were the interviews taped while they were still naked or did they get dressed first?)

We need to talk more - not about sports and women and stereotypical “guy things,” but about what really drives us as people. Topics like our physical and mental health, our worries and insecurities, our hopes and dream, and our overall emotions should become commonplace.

I’m stealing a challenge from my friend, Dave Fuehrer: “If I can ask you to take one action, it is to admit to something that scares you. Admit it to a friend, to a partner, or to a piece of paper. But just admit it.” No matter if you’re talking to your male buddy, your wife, or a mashed up dead tree, it’s the first step in being a “transformational” man.
"My boy is very in touch with how he feels and I encourage that. I think it's important that as fathers we step up. At the moment, in the collective... there's more discussion about self-development."
While I don’t have children of my own, this quote still resonates strongly. It’s showing that not only is this father recognizing the value of “transformational manhood,” he’s working on instilling and encouraging it in his own son. In that boy’s life, he may see the end of “traditional manhood” as we know it. He may even be able to answer my final question as I closed out the book...

Should we even be asking what a man is?

"What being a man means is becoming quite blurred"
"I don't like to think about what being a man means. We're not just men and women. We're human."
In writing a men’s health blog, I always try to be careful to not act like men have been systematically oppressed. Every ABSOT post runs through a review process by my Editor-in-Chief, Katie, and we’ve had numerous conversations about making sure that I’m keeping my eye on the ball with regards to the overall scope of society in regards to men and privilege. While I do get very passionate about men’s health, the truth is that men have done much of this damage to themselves by perpetuating harmful stereotypes and narratives.

Since the US election of 2016, which literally coincided with the day I was told my cancer had spread, there has been an inspiring movement of female empowerment between the #MeToo movement and more.

This isn’t to say we need a ‘manism’ movement, which is even echoed in this quote:
"I don't think feminism should rewind, but there needs to be a way for men to say it's hard for us, that we hurt. [But] that should take place away from feminism"
We can celebrate the differences without placing one sex above the other. Respecting differences and promoting equality for all gender identifications is important, especially in today’s world. It’s truly the only way we can progress as a human society. It’s ok for men to have feelings and share them, and it is ok for women to stand up for what they believe in when something isn’t right. At the end of the day, as the above quoted man said, we’re all human; we shouldn’t assign certain ‘tasks’ to certain genders.

We know “traditional manhood” is broken. “Transformational manhood” is in a step in the right direction, but we should continue moving closer to just “humanhood.” In closing, I feel this final quote really drove home the overall message of where we need to go from here:
"It's divisive to have all these projections about what men and women do. None of it's helpful. We have to just experience each other in the moment."

*A big thank you to the author and publisher of this book for sending me a copy of this book to review. All opinions expressed are my own and I was not compensated (beyond saving on the cost of this book) for this review. I highly encourage you to check it out. Even though you may be uncomfortable with the idea of looking at 100 penises in a row, the stories are compelling and you’ll find yourself seeing beyond the pictures to get to the real meat of the book*

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

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


Don't forget to follow and share ABSOT on social media by clicking the icons below!

ABSOT is endorsed by the Laughter Arts and Sciences Foundation, a registered 501.c.3 charity. To make a tax-deductible contribution to help help continue ABSOT's work with testicular cancer awareness and men's health, click the image below.

Thursday, November 1, 2018

BOB09: Teri Price - “Falling Through the Cracks: Greg’s Story”

Teri Price, Executive Producer of “Falling Through the Cracks: Greg’s Story,” Wants to Empower Men to be Part of their Health Journey, In Memory of Her Brother, Greg Price  

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 Teri Price, who is one of the executive producers a short film called “Falling Through the Cracks: Greg’s Story.” Enjoy!

My brother, Greg Price, was an innovator and was constantly thinking of ways to improve anything and everything. He was an outside-the-box thinker and believed that, with a bit of grit, we could accomplish anything. He also had a crazy high pain tolerance and preferred to shoulder any burden himself rather transfer it onto anyone else. He truly believed in people and encouraged everyone to be their best selves.

We know now these characteristics put him at risk when testicular cancer forced him to interact with our health system

Greg and his plane
Greg’s healthcare journey lasted 407 days from April 2011 to May 2012. He had his Private Pilot’s Licence which requires relatively frequent physical exams, and during one of these exams the doctor flagged an “abnormal thickening” of Greg’s epididymis (a tube-like structure located behind the testicle that aids in the maturation and transport of sperm). This resulted in some initial tests, but those results didn’t raise any red flags.

Ten months later, Greg was back in the doctor’s office for an unrelated, different reason. The doc re-checked Greg’s testicle and didn’t see any improvement. At this point, the doctor decided he wanted to get the opinion of a general surgeon, so he made a referral. From this point on, Greg experienced several unnecessary delays and breaks in the continuity of his care.

It is difficult to summarize Greg’s journey, but issues included referrals that went unanswered for 3 months, a referral to a doctor who left the clinic, and a referral to a doctor who was on vacation for 3 weeks. You can also check out more details here and an interactive timeline here.

Information was trapped in silos, wasn’t available to all of people who provided Greg’s care and was not openly shared with Greg. The processes in place wasted precious time and compromised Greg’s health. His experience was very transactional - the providers each did their individual tasks but didn’t work as a team or recognize Greg as a member of the team.

He experienced many unnecessary delays and miscommunication, which resulted in his testicular cancer diagnosis and treatment coming too slowly. Eventually, he was given surgery, but it was too late. Three days later, he died suddenly in our parents’ home from a blot clot, which was also overlooked.

After his death and journey with testicular cancer, our family wanted to understand how this could happen

Greg playing baseball
Greg was an engineer and private pilot. He was a fit 31 year-old, a good communicator, and he wasn’t afraid of a challenge. Fortunately, with our support, the Health Quality Council of Alberta decided to investigate and use Greg’s experience as a way to highlight issues and the lack of continuity of care. We were included in and contributed to the investigation, and we are extremely grateful for the Continuity of Patient Care Study that was released in December of 2013.

The lead investigator for the study, Dr. Ward Flemons, is also a professor at our local medical school. When Ward asked us if we wanted to work with his team to develop video clips they could use in the classroom to highlight the critical need for teamwork and communication in healthcare, we were excited about the opportunity to potentially have an impact on future doctors.

Eventually we ended up with a 30-minute short film about how Greg’s battle with testicular cancer didn’t have to end this way

This film is called Falling Through the Cracks: Greg’s Story. Through a colleague, Ward met writer Andrew Wreggitt and his wife Becky Shaw who joined the team and recruited director Dean Bennett, who has directed Heartland, a popular Canadian 1-hour family drama (now in its 12th season). Once we had this core team assembled, we were able to attract an amazing, skilled and professional cast and crew. Check out the trailer below.

Falling Through the Cracks greatly exceeded our expectations, and we believe the cast and crew gave us an incredible gift. We also realized early on that it should be shown to more groups than medical students, though we still consider them to be an essential group. So far, we have shared the film more than 90 times to a variety of different audiences. The film has a deep impact every time it is shown partially because it uniquely puts the audience in the patient’s shoes and they experience Greg’s journey through his eyes.

In the post-film discussions, we have shared the same message about the teamwork and communication that the first year medical students at the University of Calgary receive in the first months of their training. We have shared the film with a number of healthcare organizations and public audiences and have big plans for the next few phases of its release.

We are currently planning two virtual screenings of the film where we hope to connect with audiences beyond the communities and organizations we have visited:

Registrants of both virtual screenings will be able to watch the film and participate in a post-film discussion with members of Greg’s family. You can also submit a request for access to the film though our website.

We aren’t planning to charge fees for the use of the film. Instead, we are asking everyone to let us know who they are sharing it with, what their hopes/objectives are, and to to loop back after viewing the film to share what they learned, including what worked and what didn’t with their audience*. We want to continually grow a community around the use of the film and share resources that will set everyone up for successful screenings.

Greg was an amazing individual but the characteristics that put him at risk are not unique to his personality 

Greg and his family in their younger days
Many guys his age would rather tough it out than scare their family members. When a doctor says everything will be fine, we want to believe them. When we are told not to worry or question, this is a more desirable path than being a squeaky wheel or burden on the system. But healthcare should be a team sport and patients and their families should be acknowledged (and welcomed) as critical members of the team. This is not what Greg experienced, and unfortunately, his experience is not unique.

Greg’s journey was a series of transactions, he was not fully informed of what was going on, and because of this was not able to contribute to his own health care journey in ways that he was fully capable of.

Be sure to connect with Greg’s Wings by visiting them at twitter.com/gregswings, instagram.com/gregswings, facebook.com/gregswings, or by emailing teri@gregswings.ca. 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!

*NOTE: The film can have an emotional impact on people, especially those who have had their own experiences with the healthcare system. Additionally, having the option to talk about reactions and share ideas after you have seen the film is crucially important. We strongly encourage you to watch the film with a group of friends, family, co-workers or anyone that you will be able to have a discussion with afterwards. 

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

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


Don't forget to follow and share ABSOT on social media by clicking the icons below!

ABSOT is endorsed by the Laughter Arts and Sciences Foundation, a registered 501.c.3 charity. To make a tax-deductible contribution to help help continue ABSOT's work with testicular cancer awareness and men's health, click the image below.