Tuesday, October 31, 2017

PCL16: A Stranger Things Episode

I write this on the eve of my orchiectomyversary. As luck would have it, it was also the day season two of the Netflix show Stranger Things was released. The show was a good marathon towards the end of chemo, so I figured binging it would be a good and harmless way to spend a Friday evening.

I barely made it through the first episode.

(Minor spoilers to follow, but nothing that impacts anything significant for the second season of the show.)

The first season’s plot revolves around a boy, named Will Byars, who goes missing from his home. He's found by the end of the season, but at the start of the second season, he's experiencing visions related to the trauma he experienced while missing. He shares with his doctor that he's seeing things.

Will discussing with his doctor.
He pulls off the gown as well as me.
It's nearly one year to the day of when he disappeared into the Upside Down (kind of like a dark mirror of our world). His doctor listens and states that Will’s experience is normal. It's called the “Anniversary Effect,” which apparently is a real thing. The doctor explains that The Anniversary Effect is when an “anniversary of an event brings back traumatic memories. Sort of opens up the neurological floodgates, so to speak.”

Nearly thirty seconds after the doctor said that line, I started feeling very overwhelmed and anxious for a variety of reasons. I began thinking about some minor inconveniences from earlier in the day. Our HVAC (which we had installed less than three months ago) wasn't pumping hot air, so I had spent two hours earlier bouncing between calls with the installers, the home warranty company, and the manufacturer. Finally, it was resolved (the installers would come out the next day), but by then, it was dinner time. Since Mal and I had plans to start the show, I couldn't go to the gym like I normally do.

I figured I'd just get my workout in the next day, but with the installers coming, I wasn’t sure if that would happen or not. I also wanted popcorn, but a student had brought me a donut that morning. Fitness and clean eating have become a priority to me, which is healthy. However, tonight, a skipped workout, a donut and some popcorn created a feeling of anxiety.

Why am I sharing these trivial things? All of these things happened hours previously and without much fanfare. Ordinarily, they would be minor nuisances.

If you're not familiar with the show, this is Eleven.
She is my spirit animal and she loves Eggos.
But as that scene flashed before my eyes, they all suddenly and unexpectedly hit me like a ton of bricks. I may not have faced a Demogorgon like Will, but I began my battle against another otherworldly creature a year ago: cancer. It dawned on me - I was facing my own Anniversary Effect.

I suppose this is what being triggered feels like or perhaps a mild anxiety attack. It's not a fun feeling. I couldn't necessarily pinpoint why I was feeling that way, beyond the impending day of remembrance for Lefty, and therefore, I wasn’t sure what I really needed to do to move forward.

I decided not to watch episode two, as I didn't want any more fun surprises. I tried to explain to Mallory what I was feeling but as usual, what I say doesn’t quite match my head thoughts.

Instead, I retreated to solitude to write this piece, which admittedly isn't any more clear than my attempts at a verbal explanation, and headed to bed. Before I fell asleep, I did some research on the Anniversary Effect, and I found that non-Netflix doctors recommend to distract yourself with other things as the moment approaches, so sleeping seemed to be a wise choice. Can’t stress over things if you’re sleeping.

As I’ve shared time and time again, I know it's going to be an up and down journey, especially when I hit these not-so-fun milestones. The positive words I wrote in my “One Year Ago” post are still 100% accurate. Those represent my overall feelings as I approached the day; even though what happened today seems to negate that post, this was a moment in time that I felt I needed to share.

Do I feel better as I wrap this up? Not dramatically, but a little better. Writing things down helps me get them out of my head. At the very least, I have a record of what I felt at the time. Some of my favorite posts, like “The Post Op,” “Spring Break Paranoia,” and parts of “Six Months Later,” have been written in the heat of the moment while I'm feeling vulnerable. I can't figure out what I want to say out loud so I write it and let it come out that way. I wasn’t sure what would come of this piece. However, I know myself enough to know that I process things best by writing. That's what I needed in that moment, and that's what I did.

Of one thing I was sure. My anxiety had just been turned up to… Eleven.


Author’s Note: As I edit this piece, it’s the next morning, and I do feel much better. It didn’t even require too many Eggos.

Saturday, October 28, 2017

PCL15: One Year Ago

One year ago today, I was put to sleep at around 7:00 am. About two hours later, I woke up 50% more aerodynamic and with 50% less balls. 

It's been exactly a year since my orchiectomy (my orchiectomyversary, if you will), but it feels like this all just started yesterday. I clearly remember the events of October 26th and 28th in 2016.

I was told I had cancer on the 26th. The following video shows my initial thoughts and the first hints of what would later become ABSOT.


This year on the 26th, I spent the day teaching my students, and then prepping a meal for a co-worker who recently had a baby. Being on the other side of the meal prep chain is not nearly as fun as the consumption side of things.

Two days later, I was having a ball cut out of me, and the fiery pain of recovery would be starting soon. In the the video below, I taped my thoughts during the recovery from that surgery.


Today, I'm having a ball watching people be cut open in Jigsaw (judge me all you want, but I love those movies) and will be having a bonfire later this evening. Weird how the past repeats itself, but I much prefer this version of events.

While the physical days semi-mirror each other, much has changed since I entered that hospital waiting room and donned those awesome slipper socks.

Last year, my immediate concerns revolved around what would be happening next. Had the cancer spread? Would I need chemo? (See the video below for my answers, although the video title is a spoiler.)


This year, my thoughts are slightly less dire. Will my students pass their district math test on Monday? (I'm hoping so.) Will I dress up as a scary clown, put a bowl and sign that says “Please Only Take One” on my lap and scare kids as they grab more than one piece candy? (Probably, and that's a sign I should have had on my lap last year too.)

While my immediate priorities aren't about survival like they were last year, my long term goals have definitely changed. My biggest mission last year was to shake up the world of education with the teaching style of Mr. B. Now, I'm focusing on my own classroom and my students. Fame in education isn't something that interests me anymore. It's more about making impact on my students and community than making a name for myself. I haven't even published a piece on my teaching blog since July.

Check your apples! This took way longer to get an
apple seed to stick than I imagined.
However, I've put out a handful of ABSOT blog posts, posted dozens of pictures and videos on Instagram, produced 1,000+ bracelets, and begun work on a few major awareness projects. The aim of all of this is far different than my old goals with educational social media. While those were to make my impact and make myself known, this is about the mission and the cause. I want to be a catalyst to help conversations about testicles be part of everyday conversation. I want men thinking of me and checking themselves (hopefully not at the same time, but whatever works). It's less about me and more about awareness. Now, when people ask me what I do, I respond with “I'm a fourth grade teacher and my passion is to spread awareness about testicular cancer and men's health.”

In nine days, I'll visit Shippensburg University (my alma mater). I had plans to attend homecoming there this weekend last year, but had to sit it out for obvious reasons. This year, I’ll be speaking a group of college students about my journey and goals at the Ship's Got Balls world record attempt. This will be the first of what I hope to be many opportunities to speak directly to men about the importance of early detection and open conversation.

I first mentioned an idea to write a book in February, and I haven’t dropped the ball on it. I still have plans to complete it in the next few years, and have been tossing around ideas on how to make it a helpful guide for men in general.

My quality of life has changed drastically since that surgery many moons ago. Back then, I buried myself in projects, instead of finding what was meaningful to me. I'm making better use of my time now. I don't have a perfect balance but I'm making sure I enjoy the life I do have, as at this point last year I wasn't sure how much longer that would be.

When I write these reflection posts, such as the one at two months and five months (that I miscounted and titled “Six Months Later”), I always make it a point to be real and share my full thoughts. I have no outline for these posts and let the words flow as they come to me. Overall, I'm happier with life than I was a year ago, but I find myself getting angry or upset for seemingly minor matters sometimes. After facing a thing like cancer, I've gained a new perspective on life, and it's hard to see others complain about smaller trivial events or things. I may write a post about this in the future, but it's something I've found myself being aware of a lot more lately.

While the physical scar from surgery has all but faded, the mental and emotional side of things still proves to be harder. Fears of the cancer coming back still terrify me more than the haunted house my dad took me to when I was seven. (As an aside, that was the first time my dad saw me physically assault someone and possibly swear - I have tried to block it out by now, but it still haunts me to this day. See what I did there?)

But I'm trying not to dwell on the recurrence worries. I had blood work done earlier this month, and there were no concerns in the results. I've been working on only doing self checks once or twice a month, but in the past few weeks, the frequency has definitely picked up. I thought I felt a lump the other day, which sent me into a panic for a few days. However, something similar also happened in April and ended up being nothing. At what point does it stop being constant vigilance and start being the boy who cried wolf?

However, those fears are to be expected around this time, and I know they'll spike again in December around my next scan. All in all, it's weird seeing how life has changed in the span of a year, but it's a good weird. This feels like my second shot at life, and I'm making the best of it. I'm looking forward to being able to actually enjoy fall and winter this year, instead of being confined to a chemo chair or bed.

And if you're in the Fredericksburg, VA, area on October 31st, feel free to stop by and take a piece of candy from the clown on the front porch.

But only take one, unless you want to play a game.


Sunday, October 22, 2017

PCL14: Stupid Cancer - There's An App For That

Back when I was first diagnosed in October/November 2016, I was looking for different ways to let people know about the new journey I was facing. While browsing, I found a leather bracelet that says “stupidcancer” on the Stupid Cancer online store. This bracelet spoke to me - I had wanted something that was subtle about my ongoing fight against testicular cancer, but also poignant enough to spark a conversation. Bonus points - I could wear it around my students and it wouldn’t be inappropriate.

Beard and bracelet game strong
My ABSOT partner-in-crime, Katie, bought it for me, most likely as a way to shut me up about whining about not having it. Ever since then, it’s been a mainstay in my wardrobe. Rounding out my wrist ensemble is my “SURVIVE” bracelet (why it’s not SURVIVOR is explained in this post) and my brand new “Carpe Scrotiem” bracelet (you can get one for yourself here).

After getting the bracelet and following them on Instagram, Stupid Cancer was one place where I started my journey in finding a community of cancer patients and survivors. I continued searching and I found “my people” is on cancer Instagram (or Cancergram as I like to call it). This community shares a special bond. No one gets cancer like other survivors and patients. I enjoy connecting with people with my ABSOT Instagram account, but I still found myself wishing to go deeper.

Imagine my joy when I was surfing Cancergram and saw that Stupid Cancer had just released a new app designed to match you with similar young adults facing cancer. I immediately signed up.

The intake questions reminded me of when I signed up for Match.com, although this one was a little more direct in asking about my private areas. The app asked about my relationship with cancer (whether I was a patient, survivor, caregiver or friend), as well as my type of cancer, staging and current status (in treatment or completed). It also recorded what treatments I had received, as well as more general information like my age and gender. In my profile, I found I could also add a mini-bio and customize an avatar. While browsing, I mistakenly thought one avatar was a person with blue hair, but it was actually a person with a blue bandana on.

After setting up my profile, I was presented with some matches, based on my intake info. My first couple of matches were men with testicular cancer, and further down the list were both men and women with different cancers, but of a similar age.

The first option to chat with someone is in the public chatroom, where everyone and anyone who is on the app can join in. It’s a constant stream of questions, answers, and shared experiences. Stupid Cancer hosts a formal App Chat every Wednesday at 8 pm EST. The first chat was all about how cancer can change friendships (a topic I am well-versed in) and other aspects of your life. The host, the owner of Lacuna Loft, painted a metaphor of you being the captain of your ship and deciding who gets to stay on and who is booted off. Hopefully none of us ever become actual captains on cruise ships, as many of us had some people we wanted to throw overboard (but also plenty in the captain’s quarters).

I hope Stupid Cancer eventually introduces some cancer-specific chat rooms. I enjoy interacting and reading others’ perspectives on the Testicular Cancer Awareness Foundation's Ambassador Facebook page and would welcome another forum for open discussion with other testicular cancer survivors and patients. My one stipulation - this chat room must be called “The Ball Room.”

The other way to communicate on the app is through individual, private chats. This is like sliding into someone’s DMs, without the Netflix and chill (do these references make me young and hip?). At the time of this post, I have talked with well over a dozen people, with all sorts of diagnoses and from different age groups. Cancer is typically the first discussion point, but it leads into other topics from there. Shout out to Megan who is also on Team TayTay (or Team Swifty, depending who you ask).

If you’re a young adult cancer survivor/patient, I recommend that you sign up. It’s free and can be a great tool to connect with other people who are experiencing the same things you’re facing/have faced. While the app is new, I find myself checking it as frequently as Instagram. Interestingly enough, I have connected on this app with various people I’ve also connected with on Cancergram.

While I was writing about the chatrooms, I found myself using the phrase “many of us” rather than “many of the participants.” To me, this shows how quickly I have come to enjoy this app and community and feel right at home at Stupid Cancer. I’ll still wear my bracelets proudly and hope for face-to-face connections with survivors, but I’m glad that Stupid Cancer has given me and other survivors one more tool for living a life affected by cancer.