Sunday, September 24, 2017

PCL13: eTC - Eradicated Testicle Counseling

Artist's interpretation if I was a therapist
Anyone who knows me knows I don't really like talking about my feelings to other humans. Frankly, I don't really like verbally speaking to other people (I prefer cats) but have no problem with digital communication or writing.

This is probably a big part of why traditional therapy didn't work for me when I tried a few sessions back in April. That, and I'm not sure what to do on that couch - do I lay down, sit up, or what? I usually settled for an awkward lounge position.

Don't get me wrong - my therapist was great and she gave me a lot of good advice. However, she had never experienced cancer first hand, let alone testicular cancer, which isn’t too surprising, considering she has even fewer testicles than me.

Despite stopping my in-person therapy sessions back in June, I knew I still needed to mentally process what I had gone through. Luckily, the Movember Foundation suggested I try a program called eTC Express, which I recently completed. I believe that eTC is an acronym for “Eradicated Testicle Counseling,” though it could just be similar in name to email. The best part? It's online and self-paced, so I don't have to talk to other people.

That being said, I don't want you thinking that the human element is completely gone from this therapy. It's not like I'm Matthew Broderick in War Games and communicating with a server somewhere. There are real people behind the scenes and woven throughout the program (more on this in a bit).

How eTC Works

Modules 1-4 overview
When you begin eTC, you take a pre assessment to determine your current needs. Since my biggest concerns were fear over remission, general anxiety in life, and difficulty relating to others (see above desire to just communicate through texts and email), I definitely qualified as a strong candidate for this program. (For more in-depth information, you can visit the FAQ page.)

There are six modules in total: Foundations, After Treatment, Changes, Being A Man, Significant Others, and Moving Forward. While some of the modules were more applicable to me, I still had access to them all.

Each module has a variety of tasks, with some reading of texts, videos, and audio files. The modules focus a lot on putting “tools in your toolbox” to deal with the new life you're now facing. Personally, I think they should have called them “skills in a sack,” but maybe their pun game isn’t as strong. Some of these tools include mindfulness, worry postponement, challenging unhelpful thoughts, and many more.

Overall, the modules were enlightening and helpful. I wish I had had some of the modules, especially “Changes,” immediately after finishing treatment. It dealt with physical changes and recovery, which is something that wasn't as important to me seven months post-chemo. eTC is something I would recommend to men at any stage of their testicular cancer journey.

My Favorite Parts of eTC

One thing I really liked about the program was when I was asked to respond to prompts. If you can't tell, I enjoy writing (and it’s a strategy that’s actually included in the “toolbox”). While the ABSOT posts go through various stages of drafting, editing, revision, and publishing, it was nice to be able to just write freely and deal with my raw emotions

At one point, I had to list what's important to me. Some things I would have definitely included prior to cancer didn't even cross my mind, which surprised me to see in writing. Rest assured, my cat, Conner, still ranked very high on the list (see aforementioned wanting to talk to cats).

Part of eTC is to evaluate your levels of distress every few modules. Mine are slightly higher than normal, with my one year of diagnosis coming up. A few days after indicating this, I got an email* from Dr. Ben Smith, who is actually in a number of the videos. He reached out personally to make sure I was okay and to offer his help. Even though he's halfway around the world, he was happy to offer his assistance.

That's probably something I should mention. This program is based in Australia and some things towards the end (regarding financial and legal business) are about Australia. I just kind of skipped through it. I really hope the Australian team does not take offense to the dingo joke I made in my cost of cancer post.

One of the videos in module six, with my favorite
Australian survivor, Matt
Another powerful piece of the program was the video interviews of Australian survivors. It was more than just their accents that made it compelling. (As a side note I love British, Irish, and Australian accent like most Americans. I once listened to Irish talk radio for three weeks in hopes of developing an accent. No such luck.)

There were five different guys with a total of four testicles (as far as I could tell one of them had both removed). Their stories mirrored mine - struggling with handling the transition back to work, dealing with expectations, and finding ways to restore a sense of self.

Separately, these pieces were helpful, but together they formed a basis of powerful counseling, a la a Voltron of ball-related help. Both sharing my own feelings and hearing the feelings of others helped to push me in the right direction.

Moving Forward

Module Six, Moving Forward, was my personal favorite. That's the point I'm in now - needing to move forward but not feeling sure of where to go. I've been grappling with this notion that cancer was a terrible thing, but also a great thing for me, in an odd way. This module specifically touched on it, which made me feel like I'm not alone in that reaction.

Modules 5 and 6 overview
Two quotes from this module really resonated with me. “It's reshaping what you think is normal" completely encapsulates my current mantra. My life is different than it was before cancer and is different than it would be if I hadn't ever been diagnosed. I had terrible work-life balance before and no clearly defined goals. Cancer helped show me the error of my ways and what’s important.

The other quote that stuck with me was "every time I lost something, I gave myself something back." While this does not mean I need to get a prosthetic testicle (especially since they don't make BB-8 shaped ones), I've found ways to improve my life to make up what I no longer have. I lost a friend, but found a community of support. I lost time, but I'm making up for it tenfold. I lost hair, but I grew it back (and got some sweet hats in the meantime).

eTC was exactly what I needed. While I wasn’t sharing my personal feelings to a living human while awkwardly lounging on a couch, the words and the testimonials from the other survivors articulated what I was feeling. If you're at a loss for a therapy program and don't think traditional therapy will work for you, I recommend you give this a shot.

However, if you get to the module that asks, “Shall we play a game?,” you should probably take a day off.**



* Dr. Smith asked me to include that “the website is currently being evaluated in a research study, so we’re asking a few questions of website users to help us evaluate how useful the site is.” These questions were brief and not cumbersome at all.

**for those of you counting, that's two Matthew Broderick references in one sentence.

Saturday, August 26, 2017

PCL12: I Lost More Than a Ball... I Lost Time

Something I’ve been thinking a lot about lately is the concept of lost time. Compared to some cancer treatments that last for years on end, four months of surgery/treatment followed by an additional few months of feeling “off” during recovery isn’t too terrible. While I still continue to struggle with the emotional and mental ramifications of experiencing cancer, my life is more or less physically back on track.

This was once the bag I took to chemo...
Now it is my gym bag
Despite this, I have a hard time letting go of the fact that I lost nearly half a year of my life, especially a year that was supposed to be one of the happiest in my life with our upcoming wedding. While I don’t mind lying around watching movies for hours on end (such as later tonight when I watch Guardians of the Galaxy Vol 2 [for the third time]), I like doing that when it’s my choice… not because I have no energy to do anything else.

However, I am not simply dwelling on the time lost and doing nothing about it. I am making changes in my life and making the most of the time I have now that I am healthy. One of the biggest lifestyle changes is a renewed commitment to physical activity and eating healthy. Before cancer (can I just call this era BC?), I was really invested in working out during college. When I moved to Virginia, I kept up with fitness, but once I started my Masters program, I let my healthy habits slip. Though I finished my Masters in 2015, over a year prior to my cancer diagnosis, I did not make a sustained effort in restarting a regular exercise regimen. I would jog for a few days, but it never lasted. I always had an excuse… not enough time, no energy, etc etc.

After experiencing chemo and knowing what it truly feels like to have no energy, I am making fitness a priority (I promise this isn’t leading into a Beachbody coach spiel - I really hate those). I started with doing P90X (still not a Beachbody post!) but decided I needed to do more. I joined a gym and got a fitness plan from Estrella Body Architect, which is owned by the spouse of a survivor (and also has many great shirts available at Courage and a Cure). Sticking with my new habit hasn’t been too difficult. Because I’m paying for a monthly gym membership, it feels like I’m throwing money away each time I make an excuse not to use it, which is a motivator for me to stay committed. I am a few weeks in and am making it a goal to hit the gym every day.

On the topic of money, I am trying to let go of my frugality (or tightwaddedness as my wife says). In the BC time, I was very stingy with money, since I want to be able to retire before 80 and have a good life. Now, I know that life isn’t necessarily guaranteed and we should enjoy the time we have in the present. We went to Hawaii on our honeymoon, and I didn’t stress (too much) about the fact that some meals cost double what we would pay in Virginia. It was about the experience. Pouring money into creating memorable moments is something that is far more valuable than saving it or spending it on random items.

I missed Chris Pratt by six days :( 
The Hawaiian trip was truly that - the experience of a lifetime. I love to travel, and this trip was exactly what I needed. For two weeks, I did not worry about a recurrence or any of the other fears that plague my mind occasionally. We hiked up a crater, drove ATVs in Jurassic World (pictured to the left), swam with dolphins, visited Pearl Harbor, snorkeled in the reefs, and so much more. I embraced every moment of that trip. If you’ve recently ended the treatment part of your journey, take a trip ASAP. You’ve earned it. And if you want to pay me to come with you, I won’t say no.

My new attitude extended into my day to day life as well. Our AC unit died the third day back from the honeymoon and rather than repairing it, we had to replace the whole system, costing several thousand dollars. In the BC era, I would have freaked out about the amount of money we had just spent in Hawaii, but the new me shrugged it off. If I have this time now, I’m not going to worry about things I have no control over. You do not want to be in Virginia in August without air conditioning!

Beyond musing about the lost opportunities from the time when I had cancer , I’m finding I am having a hard time recalling what did happen while I was going through chemo and recovery. November through March is all sort of hazy. I can remember significant elements of the journey, but I can’t remember details here and there. Luckily, I wrote the majority of it down here on this blog and have friends and family to remind me. If you’re a current cancer patient, I recommend writing down your experiences. You don’t need to post it publicly anywhere, but you’ll want to look back and see how much you’ve overcome. They might not be memories that are exactly pleasant, but they are important and will help shape you going forward into your recovery.

Despite losing half of a year to testicular cancer, I look back at this time period to remind me of how far I’ve come and where I still want to go. So here’s to a continued resolution to grab life by the ball(s) and make up for lost time. We only have one life and we need to live it to the fullest (wow, I sound like such a millennial).

Monday, August 14, 2017

PCL11: Six Ways to Talk about Testicles

My last post was all about how talking about cancer can be awkward for those who aren’t experiencing it personally, but talking about testicular health as a survivor can be just as hard. I've also shared about some excuses guys may use to avoid doing a self-exam regularly. The topic of testicles can be considered impolite, even if it’s coming from a place of education. One of the primary goals of ABSOT is to get these “private” conversations out in the open, but that’s easier said than done. So to help, a la Barney Stinson’s Playbook from How I Met Your Mother, I’ve crafted various ways to bring up self-checks and testicles into everyday dialogue, based on some real life experiences.

If you want to go the extra mile, add it to your licence plate.

shirt courtesy of Courage and a Cure - go check out the link!

1. The Conversation Weaver


While mowing my yard a few weeks ago, I saw my neighbor gearing up to do the same. He's about my age, and we've only talked twice. We started chatting about my upcoming wedding and honeymoon. I said something to the effect of, “After facing cancer this year, I really need a Hawaiian vacation.” It was that easy to weave the topic in naturally. Knowing his age put him at a higher risk for testicular cancer, I segued into telling him to do a self check. He looked at me and said, "How? I've never even heard of that."

This anecdote is what sparked this whole blog post. While it was relatively easy to bring testicular health up in conversation, it proves there's still work to do with raising awareness. It's not enough to simply say to do a self check; men need to know how to do them too. I told my neighbor the steps: Place your index and middle fingers under the testicle with your thumb on top. Firmly but gently, roll the testicle between your fingers. Repeat on the other one. After sharing this, he actually thanked me, even though it was a semi-awkward third conversation.

2. The Carpe Scrotiem

I’m not sure if it is because I have become more attuned to news media about testicular cancer due to my personal circumstances, but it seems that more celebrities are speaking out about their testicular cancer diagnoses. In the past few months, several baseball players have gone on the record about their battles, and HGTV’s Taurek El Moussa from Flip or Flop shared that he overcame testicular cancer in 2013.

Use these celebrities to get a conversation going. See them on the cover of People or on the scrolling banner thingie on the bottom of the screen on SportsCenter (I don’t watch ESPN much)? Point it out and say, “I had testicular cancer, too. Do you know how important it is to do regular self-checks?” Whoever you’re talking to will now have two connections to testicular cancer - the celebrity and you. If you follow it up with a how-to if necessary, it will make that person that much more likely to keep up with their self-check schedule.

3. The Question

Stay strong, brother.
While on our Hawaiian honeymoon, our tour bus driver, Hanalei (Henry in English), asked my wife Mallory and I what we were celebrating. We said that we were on our honeymoon and also celebrating my good health. With a quizzical look, he asked, “Have you had some medical problems lately?” This question gave me a perfect opportunity to bring up testicular cancer, educating not only him but others who were also on the tour.

It turns out, he is a ten year stage 4 lung cancer survivor. I would have never known that if he didn’t ask the question. You might not always have someone asking you a question that segues nicely into a discussion about testicular cancer, but you can ask them a question about their health, if you feel comfortable. Sometimes, it might be as simple as asking after their well-being. After truly listening, you can then share your own story, making sure to include the relevant self-check information so that your listener can take action.

4. The Misconception Redemption

The morning of my wedding, one of my groomsmen said, “Can’t you get testicular cancer from getting kicked hard in the balls?” After berating him for not reading my blog enough, I told him that that myth comes from people realizing something is wrong after getting kicked down there.

I used this as another opportunity to yet again rehash how to do a self-check. There are a ton of myths and misconceptions (I personally like the portmanteau ‘mythconception’), and dispelling these can be a way to get a conversation flowing.

After discussing this with him, I gave him a swift kick… obviously to help him remember to self-check.

5. The Pun Game Strong

I'll never get sick of it. 
It’s sometimes hard to have such a stiff conversation, and it’s certainly not a ball to do it, but you would be a nut to not sack it up and do it. Don’t get teste about it.

One of the only good things about testicular cancer is that it lends itself to many puns and jokes. How many did you catch in the opening sentence? Hint: there are at least 5! Words related to testicular cancer all form perfect jokes. Bonus points if you have a pair of sunglasses handy and live in Miami. When I write my book, I’m sure there will be a chapter dedicated solely to testicular cancer puns. Find an opportunity and work it in- the humor will lighten the conversation enough so that you can get serious without making things too awkward.

Case in point: as I wrote this post, I was sitting in an airport. Apparently my carry-on was too large for the overhead compartments. The counter agent said, “Sir, can you check your bag?”

“Once a month, my friend. Once a month.”

6. The Blunt Approach


Of all my recommendations, this is my personal favorite. Why? It helps destigmatize talking about testicles (or TesteTalk...hold that thought as I run to the US Trademark office). It’s straight-forward and to the point. It helps make it acceptable to talk about balls in public.

For this approach, lead right off with a direct approach. Around when I was diagnosed and received numerous texts asking if I was okay, I countered with, “Have you (or your husband/fiance/boyfriend/brother/dad/grandfather/male robot) done a self-check recently?”

While it may have initially caught the person off-guard (especially those who were merely being kind by checking in), I had their attention. From there, I explained how to check. Directly connecting to my (or your) own personal experiences with testicular cancer can be much more powerful than a more socially acceptable but less helpful reference. Yes, this approach is blunt (I don’t think anyone would ever accuse me of subtlety), but it helps get those conversations out there, which is what we really need.

If you’re still feeling unsure about gabbing about your gonads, I’ll just say this to you: you survived testicular cancer, so you can survive a semi-awkward conversation that may help prevent someone else from having to do the same. Once you get the ball rolling, I think you’ll find talking naturally about testicular health isn’t a hard nut to crack.

Saturday, August 5, 2017

PCL10: How to Talk to a Cancer Patient

Cancer is something that touches thousands of lives, yet most people are at a loss for what to say to a cancer patient. Those with cancer can sometimes feel uncomfortable because of others’ words, even when it’s unintentional. Chances are, those speaking the words are just as confused by what to say.

This was on my mind as I browsed Instagram one day. While scrolling through cancer awareness accounts, I happened upon a post from Lisa from Girls on Chemo. Her post is to the right, but the essence of it is that she had been dealing with what NOT to say to people who have cancer, but she wasn’t always giving people what they COULD say instead.

I asked her if she would like to collaborate on a piece that would be useful to those struggling to find the right words to say to someone with cancer, and this is what we came up with as a rudimentary guide. As I’ve said in multiple posts, everyone approaches cancer differently. This is just our take on what we would have liked to hear and things that didn’t sit well with us as we were undergoing treatment.


Instead of saying...

Nothing.
It’s ok if you don’t really know what to say, but not acknowledging someone’s diagnosis does not provide them with any comfort. It also makes you appear as though you either don’t care or don’t know about the diagnosis, which is definitely not the message you want to send

Say...

”I’m sorry.”
Even though it’s often overused (like when you bump into someone in the grocery store), it’s ok to say you are sorry to hear that someone has cancer. Even if you say nothing other than this, the patient knows that you are thinking of them. Cancer patients might not want to talk about their diagnosis, and that’s ok, but if you express your sympathy, at least they know you have their back and will be there if and when they’re ready to talk.

Instead of saying...

”What caused your cancer?”
Most people (including doctors) don’t know what causes cancer. Asking someone who has been diagnosed with cancer what caused it or why they got it might make them feel as though they did something wrong or something to deserve such an awful disease. Even if someone was a smoker for 40 years and then got lung cancer, you should never blame someone for their illness. The “why” should only be something discussed between the patient and their doctor.

Say…

“Are there any symptoms I should look out for in my own body?”
Justin is happy to share the symptoms of testicular cancer and will often go into an in-depth explanation if he sees an opportunity. We want to spread awareness. Many cancers cannot be prevented, as in our cases, but early detection can help get someone on the path to being cured. Phrasing your curiosity about their diagnosis as a way to be proactive about your own health can lighten the weight of asking someone to delve into their medical history.

Instead of saying...

“Someone I know passed away from cancer.”
We understand that you want to connect by sharing your personal story of how cancer has impacted you or someone you love at some point, but sharing a story where a cancer patient’s outcome was not a positive one is not helpful or uplifting and can be a very damaging reminder to a patient who is already constantly contemplating their own mortality. While this seems like an obvious thing to avoid saying, Justin actually had a timeshare agent use this as a "selling point" on his honeymoon!

Say…

“I know someone who had cancer. Would you like to hear about some things that they found helpful?”
Nearly everyone has a cancer story, whether it’s their own or a close loved one. There is power in sharing information, and cancer patients can sometimes benefit from another perspective. By phrasing it as a question instead of imposing unsolicited advice, you give the cancer patient an opportunity to say no. If they say no, it’s not because they don’t value your opinion - we cancer patients are inundated with advice from everyone, from medical professionals to random people. It’s sometimes overwhelming, and we need to focus on what is working best for us.

Instead of saying...

”Let me know if there’s anything you need.”
Phrasing your offer to help this way puts the pressure and responsibility on the patient to reach out to you. This is stressful, especially when patients have so many things to do already. Many people are not comfortable asking for help, so if you leave it up to them, you may never hear from them or have an opportunity to help them for that matter. Taking action means more.

Say…

“I am going to do XYZ for you.”
Instead of asking cancer patients to contact you if they need help, tell them what you are going to do for them. For example, you might say that you are cooking them a meal and ask which day this week would be best to bring it over or bring them a frozen meal that they can use at their discretion. Call them and ask if you can pick up their child to take them out to do something fun. Drop off a basket of snacks and magazines. Organize a meal train (on websites such as lotsahelpinghands.com or takethemameal.com) and get the community involved. Don’t just say you can help - actually help.

Instead of saying...

“You are brave.”
This seems like a kind thing to say, but many patients don’t know how to handle this compliment because they don’t feel brave. Lisa described this statement to her family and friends like this: If you were on a falling bridge and the only way to survive was to jump to the side, you would do it. Would you say that was a brave move? Or would you say that you did what you had to do to survive? Cancer patients have been forced into a situation that they don’t want to be in and must take immediate action. Anything that isn’t really an option doesn’t really seem brave.

Say…

“I can’t imagine how you feel.”
Simply put, until you have cancer, you do not know what it’s like to have cancer. Justin’s grandfather had cancer, but he didn’t know what it was like until he went through it myself. You can sympathize, but empathizing is difficult without going through the experience yourself. Recognize that, and cancer patients will respect that. Then, they may tell you how they feel. Listen when they do.

Instead of saying...

“Stay positive. I hear having a positive attitude helps.”
This can imply that the patient is not allowed to break down or have bad days. People need to work through a range of emotions when diagnosed with a major illness. It’s ok to be negative or to question. Furthermore, having a positive attitude will not cure cancer on its own. It certainly lightens the seriousness of the diagnosis, but it doesn’t actually help cure cancer. Also, it’s rare to find a cancer patient who doesn’t have a ‘positive attitude’ as best that they could. By insinuating otherwise, you’re being callous.

Say…

“I know always being positive can be hard. How are you really doing?”
As we said, cancer comes with some negative thoughts and bouts of sadness. These feelings are valid and should be valued. Recognizing this and being a source of comfort that patients can turn to if they choose to do so allows you to share in this range of emotions with the cancer patient. If you’re going to ask them how they’re doing, be ready to listen without offering your opinion. They may just need time to vent and share their feelings so they don’t have to keep it bottled up all alone.

Instead of saying...

“This is all part of God’s plan.”
This statement assumes that the patient is religious, which not everyone in the world is (about a quarter of Americans alone report that they do not affiliate themselves with any religion, and there are multiple other religions besides Christianity). Beyond that, cancer patients are experiencing rapid changes in their lives. Hearing someone talk about “God’s plan” has the potential to make cancer patients think that they were destined to get cancer, which is something no one should be made to feel, even if they don’t believe in a higher power. My best advice on bringing religion into a cancer patient’s life? Don’t do it unless you know for a fact that the person is religious and you know their specific faith. If you want to pray for them or think it is part of God’s plan, that is fine, but don’t assume the cancer patient feels the same.

Say…

“This is a tough time. I’m here for you.”
At the end of the day, this statement is an excellent one for almost any situation. It acknowledges that, yes, cancer is tough while also allowing the patient to know that you are there for them without pushing your feelings onto them. Using this phrase shows compassion, and this statement does it without bringing religion into it. Sometimes the best things you can say to a cancer patient are the simplest, and this is something we always appreciated hearing.



Wednesday, July 12, 2017

PCL9: No Time for Excuses

Self-exams of testicles save lives. Period. End of story. Do not pass Go; do not collect $200. (Although if you skip doing the exams, you’ll wish you had collected that $200. Cancer is crazy expensive.) I was told by my doctor many years ago to do them monthly, and luckily, I did them regularly and discovered the lump on Lefty.

Thanks to Fighting Cancer Takes Balls
for my new shirt!
Zig Ziglar once said, “Put all excuses aside and remember this: YOU are capable.” I’m assuming he forgot to fully articulate his thoughts, probably because he was doing a self-exam. What he meant to say was, “Put all of the following excuses aside and remember this: YOU are capable... of doing regular self-exams.”

Excuse #1: I didn't know I was supposed to.

Well, you clicked on this page, so now you do. Self-exams should be done monthly. If you haven’t been doing them regularly, start now. Pick a day of the month and stick with it. You have two testicles - maybe do a check on the second of each month (or remind the man in your life to do one). I guess that means I have to do it on the first now.

Excuse #2: I don't know how.

Ever checked a grape for anything wrong before eating it? If yes, you’re halfway there. If not, you should really slow down and look at your food before eating it.

Your scrotum is relaxed in the shower, and you’re hopefully already naked too, so that’s a good place to do a self-exam. The process is easy: just place your index and middle fingers under the testicle with your thumb on top. Firmly but gently (no need to squash the berries), roll the testicle between your fingers. Any weird lumps or bumps should be checked out by a doctor. If you’re doing it monthly (LIKE YOU SHOULD BE DOING), pay attention to any changes from month to month.

My lump was on my left testicle towards the bottom. It felt like a pea-sized pebble, and there was another mass that felt like a baby jellyfish was hugging my testicle. Trust me - it wasn’t that cute. When in doubt, schedule a doctor’s appointment.

Excuse #3: I don't have time.

Stop reading this post, and do one now. I promise I’ll wait.

Seriously, it takes about a minute. (Although it now takes me half the time.) Skip that last Tweet, don’t watch the full Netflix credits, or do one less swipe on Tinder. You need to make the time. Taking care of your health is one of the most important things you can do.

Excuse #4: It's uncomfortable.
You know what else is uncomfortable? Losing your hair, low white blood cell counts, constant nausea, and never-ending fatigue from chemo. In many cases, if you detect a lump early enough, removing the testicle is enough to treat it and you won’t need to endure chemotherapy. Yes, it might suck to lose a ball, but early detection is key. The earlier you catch a lump, the better your prognosis will be, which means you’re less likely to need intense treatment.


Furthermore, it’s your body. Not to be crude or vulgar here, but chances are you’ve gotten familiar with that area of your body a few times before. I can’t think of a better reason to touch yourself than for your health.

Excuse #5: I get checked once a year at the doctor.
There’s a couple points to be made here. First of all, do you really visit your doctor once a year? If you’re like me, my last regular physical was in 2014, although I’ve definitely made up for that with the nearly 100 doctor visits since November.

Here’s another scenario for you to consider. My annual check up was always scheduled in July, since that’s my birthday month. I discovered my lump in October. Had I waited the nine months until my next regularly scheduled appointment (which I probably would have skipped again), who knows how far my cancer would have spread? Paying attention to your testicles once a year just isn’t going to cut it.

Excuse #6: If I do have it, isn't it treatable
?

While testicular cancer is among the most highly treatable cancers, I would still rather avoid chemotherapy and further treatment. Cancer of any kind has long-lasting physical and mental impacts and isn’t something I would recommend.

That’s also a weak excuse. It’s like saying, “Well I don’t need to wear a seatbelt because if I crash, I can have some surgeries and a long hospital stay and be fine eventually.” Guys, you’re not invincible.

There’s also a somber point to consider here. While testicular cancer is curable in over 90% of cases, that means it causes death in around 10% of men who develop it. Those aren’t odds you should be willing to bet on.
Watermelons are slightly larger than the average testicle,
but work well for demonstrations

Excuse #7: If something's wrong, I'll notice on my own.
False. I had no other symptoms that pointed to a health issue, aside from feeling the lump, which I wouldn’t have caught without a self-check. While it’s true that some people who are diagnosed with testicular cancer have pain, physical swelling, or other signs of something being amiss below the belt, symptoms vary from person to person. Self-exams are the first and easiest line of defense to catch early developments.

Excuse #8: Cancer is for older people.

Also false. 50% of men diagnosed with testicular cancer are between the ages of 15-35. If you consider that old, you’re probably in my fourth grade class (in which case you probably shouldn’t be reading this page until you’re a few years older - but you should come back then!) Testicular cancer can hit anyone at any age, so don’t just chalk it up to something old people have. However, if you’re not vigilant with self-exams, you could look like an old person, walking with a cane and having your hair fall out. I have personal experience with both.

So there you have it.
Eight common excuses for why you might not do a testicular self-exam - and eight reasons why they’re excuses that you should stop making. If you can think of more, let me know in the comments and I’ll update the post. If you’re still unclear about the importance of self-exams, maybe my friend Mr. Deadpool (who also had cancer but got some pretty sweet superpowers, which I regrettably have not gained… yet) can convince you. This is slightly vulgar, so consider yourself warned.





Saturday, July 1, 2017

PCL8: Six Months Later

June 30th marked six months* since I finished chemo and rang the bell. In April, I wrote about my recovery two months post-chemo. Six months is another significant milestone, so I decided to write another update.

The bachelor party crew, pictured here in 
our natural savage state
In April, my nausea and fatigue were nearly all gone, but I still had some slight issues. Today, I am completely free of both symptoms. I have not felt nauseous for at least three months, and my energy level is way up. I’ve completed about six weeks of P90X, which is a more challenging strength-building regimen than I had done in the year or two prior to diagnosis. I have also been running more regularly, cutting over three minutes off of my mile time since April. I just returned from my bachelor party with my groomsmen, which involved three days of camping, hiking through a state park, exploring a Civil War battlefield, successfully completing an escape room, and playing paintball and dozens of rounds of Kan Jam. Am I exhausted? Yes - but I am glad I had the energy to do all of that.

Another big change from where I was in April was that I recently had my port removed, which is freeing. I constantly find myself touching the spot where it was to remind me that it’s really gone. The actual incision site is still covered with medical glue, but it appears that the scar is healing nicely. The scar on my hip from my orchiectomy (which was nine months ago) has faded into almost nothing.

Another physical difference is that my hair has completely regrown to its normal length. I even had to get a haircut recently since it was getting too long and ratty. While losing my hair helped me to realize that my outward appearance is not the only thing that makes up my identity, it definitely helps me feel more like myself when I’m able to spike it up again.

While the color and texture of my hair initially seemed to be completely different, it’s getting back to normal. Before chemo, I used to have one strand of hair in the back of my head that was frizzy and curly. No matter how many times I cut it, it always grew back that way. However, since chemo, that strand has not reappeared. Some people get chemo curls; I got chemo straightening.

Haircut selfies
Despite these positive changes, some latent negative side effects are still lingering. Water still tastes funny to me, but adding lemon helps tremendously. I’m not sleeping as well as I was before chemo, but I have also been going to bed later and later. I think I’m resisting going to bed early since I was basically forced into bed by 7:00 during chemo, and I want that time back. I have some minor memory issues and am still going strong with Google Keep to-do lists and random stickies to help me keep track of what I need to get done.

However, the latter two effects may not be due to chemo at all - they may be related to my ongoing struggle with emotional healing. As I outwardly regained my sense of self after chemo, I found that the internal battle to heal continued to rage on.

I’m not the person I was before chemo. I’m not the person I was during chemo. I’m not even the person I was directly after chemo. I am a changed person. While many lessons learned from cancer were for the better, I really find myself struggling to stay upbeat and positive at times.

To be honest, I am terrified of a recurrence. While I am not performing self-checks daily like I was in April, I still find myself habitually starting to perform one. Just recently, I thought I felt another lump. Sometimes I feel pain in my scrotum. Are these symptoms real concerns, or are they the paranoid thoughts of a cancer survivor? I don’t want to be the Boy Who Cried Wolf, but I also want to have constant vigilance. Finding that balance has proven more difficult for me than I thought.

I also struggle to stay even-keeled in my attitude. I often go through drastic mood swings. One moment, I will be totally fine, and the next, I’ll become very sullen and agitated about the smallest things. I know that it’s hard on those around me, and I don’t mean it to be. It’s something I’m aware of and still working on.

Port removal scar
A lot of these side effects might seem like the typical issues that most 20-somethings deal with, but for me, it’s different. I don’t expect someone who has never had a life-threatening diagnosis like mine to understand what it’s like to battle cancer, nor do I expect them to cater to me as I process and heal. My whole life was uprooted in one fell swoop. As I said in the second post on ABSOT, 2016 was my year - engagement, new house, new job, tons of professional growth opportunities, a new puppy, etc etc. When I got my diagnosis, it all came grinding to a halt. It’s hard to come to terms with this major disruption in my life and move on. Life after cancer isn’t easy, and much like PTSD, its effects sometimes take me by surprise. You don’t know what it’s like until you’ve been there. I wouldn’t wish this experience on anyone.

Though it has been tough at times, 2017 has brought a lot of good, too - remission, a new car, another new job, a second clean scan, and our upcoming wedding. But at the same time, it’s much tougher than 2016 was. The physical difficulties brought on by cancer are now pretty much gone, but my experience continues to be hard on my internal self. People tell me I should be happy and excited because I am in remission and survived, but I find it hard to be at times. I don’t really have a real reason for it other than the internal healing is much harder than the physical.

I suppose there is no real timeline or recommended course of action to help overcome this. I was in therapy for a few weeks, but I never seemed to talk about cancer during sessions. The thing is, my downward spiral about cancer isn’t something I can talk about at a regularly scheduled time. It comes and goes as it pleases, announcing itself unexpectedly, much like the cancer did.

I struggled with mental health in high school to the point where I was in weekly therapy and on anti-depressants. I don’t think I’m quite at that stage yet, but I’m also not ashamed to ask for serious help if it gets there. I know that having depression at such a young age gives me a higher likelihood of experiencing it later in life, and I imagine a traumatic event like having cancer further raises the risk.

When I am fine, it seems trivial to talk about. When I am experiencing an episode, I don’t want to talk about it. When I need it most, I can’t bring myself to verbalize what I’m feeling. I know, that’s such a cop out. I tried to talk about how I am feeling with Mallory a week or two ago, but I broke down in tears. When she asked me why I was crying (which is an extremely rare occurrence), I said I didn’t want to talk to her. One of the few people in the world who loves me unconditionally, and I was shutting her out. The next morning I was fine, but we still never discussed why I was so upset the previous evening. This is the cruel irony of cancer remission. I want to talk about it, but at the same time, I don’t.

Here's a slice of pizza and cupcakes for
reading this post.
The arrangement was definitely not staged.
I’ve heard from many people how ABSOT has helped them, but I think running this blog has helped me tenfold. I can let words I will never say out loud flow when I’m writing for the blog.

I’m well aware that this post started as a “hey, these are some great changes” and took a hard left into “my psyche is shattering” and that I’m not providing any real action steps for myself or for others. I don’t think I have any action steps right now; I just need to ride this out until I figure out what to do next.

My next post will most likely be more aligned with the generally witty/happy theme of ABSOT, but I do want to make it a point to always share the full truth of this journey. It’s not always a ball (pun intended) to be a cancer survivor, and I think it’s important for people to know that. For now, I’ll try to keep my spirits up, but I also recognize that it would be more damaging in the long run to always try to mask how I am truly feeling to people who care about me.

Well, that’s a really cheerful post. I’ll end on a positive note. Here’s a testicular cancer joke I found on the web:

“A testicular cancer patient sees a urologist to schedule an orchiectomy. The doctor tells him the operation will cost $4,000. The patient asks him if there's any way he can get a discount. The doctor answers, ‘Well, I could do two for the price of one’.”

* Turns out - that was five months. Oh well, close enough. Thanks, chemo brain. 

Sunday, June 25, 2017

PCL7: Avenging My Port

Shaving my chest in prep
Iron Man, The Hulk, Spider-Man, and Thor: Earth’s Mightiest Heroes. Brought together by one common thread - to defeat the ever-looming threat of the galactic plan of conquest by the evil villain Thanos.

However, on Wednesday, June 21st, these heroes came together to remove an even bigger nuisance - my chemo port.

***

A week and a half earlier, I met with Director Fury (Dr. Maurer) at SHIELD Headquarters to review my latest mission report. After another successful scan, he said I could get my port out if I wanted. I did. The port was annoying, itchy, uncomfortable, and painful when Tobi or Conner (our puppy and cat, respectively) jumped on it or when a student hugged me.

The surgery was scheduled for the second day of my summer vacation. In the days leading up to the appointment, the hospital called me to verify that I was coming and to give me instructions. I was not to eat or drink anything for the two hours prior to the scheduled start time. To some, this doesn’t sound like a hard bargain, but for me, it was: I drink water constantly (especially since my chemo-altered taste buds got me addicted to lemon water).

Nonetheless, I survived the drought and took the Quinjet to the hospital. After greeting me, a kind attendant walked me to a waiting room and I waited.

And waited.

And waited.

And waited. Apparently there was an emergency (maybe another attack by Loki?) in that wing of the hospital that morning, and everything was running behind. No worries, though. I forgave the late start time when a nurse brought me another pair of slipper socks: just what I needed to add to my robust collection from my orchiectomy and port placement.

Finally, it was time to begin the procedure. Two nurses wheeled me into another room and hooked up an IV, took my vitals, and ran through my medical history. The supervising nurse is also a cancer survivor, and we traded stories of chemo and life as a survivor. The dynamic between cancer survivors is a cool kind of camaraderie that I can’t really put into words.

As with the staff who greeted me, all of the other nursing staff on duty for my surgery were incredibly nice, too. We talked about the upcoming wedding, my job as a teacher (“Oh, those fourth graders just must love having a male teacher!”), and, naturally, my general love of superheroes (one nurse identified as a Thor fan, while the anesthesiologist identified as actually being the Hulk. Yes, you read that correctly).

The doctor (who called dibs on Spider-Man, which I felt was foolish - he had a perfect opportunity to choose Dr. Strange) came in to talk to me about the procedure. After that, Lady Thor injected me with some medicine that put me into a calm state, one that I find akin to drinking a six-pack of hard cider in one sitting. It made me sleepy, but I did not fall into Odinsleep.

The surgery team tented me up and injected me with a local anesthetic. To be honest, this was the only pain I felt during the procedure. It felt like a short bee sting, followed by a fiery feeling coursing through my chest. Spider-Doc told me I would feel some pressure. Fewer than two minutes later, he said, “Okay, the port is out.”

They then patched me up with some glue, which the Hulk said was just Gorilla Glue from Home Depot (and I’m not sure if he was kidding). I was wheeled back into my original room, where Mallory was waiting.

After being observed for thirty minutes, the nurse gave me my discharge instructions, which were pretty easy to follow - No strenuous exercise for 24 hours (read: Avengers mini-marathon for the next 24 hours), no driving for 24 hours (read: put on a gender-swapped production of Driving Miss Daisy with Mal), and no showers for 48 hours (read: Mal would be sleeping in the guest room to avoid my imminent powerful stench).

I began feeling a dull pain about four hours after my procedure, which I combated with Advil. I took more the following morning and once during the day. Compared to the pain of the neupogen shots or other maladies during cancer treatment, this slight ache was nothing. It was like Ronan in Guardians of the Galaxy - annoying, but ultimately forgettable.

Two days later, I removed the bandage. Though I had shaved my chest in preparation for surgery, the bandage still pulled on the hair, which was more painful than any pain I experienced with the surgery. I looked down and confirmed it - I was no longer Iron Man, with a chest piece keeping me alive. (The nerd in me wants to point out that Tony Stark had his arc reactor removed in Iron Man 3, so technically I still can be Iron Man.)

While getting my port out was a very quick and mostly painless procedure, it represented another hurdle I had overcome. My hair had grown back (just like Groot had regrown into Baby Groot by Guardians of the Galaxy Vol 2) and I wasn’t getting drugs pumped regularly into my body, but I still had an obnoxious reminder of cancer in my chest. Besides being physically annoying, it was a constant sign of my journey, and it was one that I couldn’t escape - it was literally a part of me. With it gone, I had tangible proof that I would no longer need chemo and that this phase was 100% behind me. Furthermore, losing the port also represented the last major medical procedure I would have for the foreseeable future. After months of surgeries, chemo, and other visits, I’m just about done with doctor’s visits. While I don’t ever want to necessarily forget this period of my life, I can do without something always literally jabbing me in the chest.

Even though it was out of my body, I still wanted to keep the port. However, since it’s apparently medical waste, I wasn’t allowed to take it home with me, but they did show it to me before they threw it away. Talk about poor service - I paid hundreds of dollars for this thing and I don’t even get to keep it! (Just kidding, I have nothing but good things to say about the hospital.) Lady Thor asked me why I wanted to keep it, especially since it’s a reminder of the bad times.

Finally deported
I don’t see it that way. I see it as the vessel that helped to save my life. Yes, it was uncomfortable and I’m thankful to have it out, but it saved me by delivering the medicine that killed my cancer. I wanted to keep it as a reminder of what I had overcome. Lady Thor, understanding my love for superheroes, paraphrased Batman from Batman Begins:

“It’s not what’s underneath, but what you do that defines you as a survivor.”

Despite being a die-hard Marvel fan, sometimes, DC actually has good advice.*

*Unless that advice is to try to cram 50 sub-plots into Batman v Superman or reshoot all of Suicide Squad.