Thursday, April 20, 2017

CC19: April is Only the Beginning

April is Testicular Cancer Awareness Month. Prior to being diagnosed, I had no idea that there was a specific month for a cancer that solely affects men. Testicular cancer is under-discussed. Perhaps it’s an issue of visibility, since testicles are usually concealed (unless you’re on some beaches in France).

I’ve been running ABSOT with the explicit goal of changing the attitudes and beliefs of society towards talking about men’s health. However, I’m just one person with a blog and still feel like society has a long way to go before testicular cancer is as acceptable to discuss as I’d like it to be.

I have hope though, especially when I look at another cancer that is generally thought of as gender-specific: breast cancer. It wasn’t easy for breast cancer activists to raise the level of awareness that the disease has today. As recently as the 1950s, the New York Times refused to print articles that contained the word “breasts.” In the 1970s, Shirley Temple Black and First Lady Betty Ford publicly announced their diagnoses, which helped bring widespread attention and acceptance to this cancer. Nowadays, dozens of female celebrities speak out about their personal battles, NFL teams wear pink to bring more attention to the disease, and many other companies and highly-visible corporations make a point to contribute to the discussion around breast cancer.

When it comes to testicular cancer, if you ask anyone to name a celebrity with a TC diagnosis, they will most likely respond with Lance Armstrong (who then went on to have some other personal troubles). Not the best “face” of the disease. However, recently, I’ve read stories of more and more athletes, celebrities, and even a YouTube personality who are sharing their testicular cancer battles. A step in the right direction.

I want to live in a world where we can freely talk about testicular self-exams. I want conversation to be open about all health issues, but I’m especially passionate about men’s health. Not talking about it can be a potentially life-threatening mistake.

I’ve already written about how men are hesitant to go to the doctor. I know I was. Even making a phone call to a medical professional seemed to be such an arduous task, although in all likelihood it saved my life.

One egg in my Easter basket
The other day I saw a friend whom I hadn’t seen since before my diagnosis. After exchanging pleasantries, he asked me how I was doing and said he was thinking a lot about how I had testicular cancer. He said that he didn’t even know what to look for. I took this as an opportunity to give him a quick rundown on how to do a self-check and recommended that he do them at least once a month.

Despite my willingness to discuss this on my blog, I still felt a little strange talking about it verbally with another guy. I wish I didn’t, but I also want to be honest about the limitations that surround having open conversations about testicular cancer. While we were talking about it, I don’t think the word ‘testicle’ or ‘ball’ or any of the other variations was used. I want to change this dialogue, both for myself and for everyone else. I want it to be deemed as okay and not weird to talk about testicles under medical circumstances. I know this starts with me. Confronting my own discomfort will help me start to have more honest conversations. But I know that I am only a small part of what needs to be a widespread change.

How can we as a society overcome the stigma that surrounds testicular cancer? Having months like April designated as “awareness months” is helpful, but awareness can’t be something that only happens for one month out of the year. I found a lump in October and was diagnosed in November. April is a long way off from those months. Discussions about self-checks need to happen more frequently.

There are fundraising runs and events, but I only know this because I’m looking for them as a testicular cancer survivor. I was aware because I had to be: testicular cancer was a part of my life, like it or not. But what about those men from 15-35 who are highly susceptible to testicular cancer? Like me, the average guy doesn’t know about the importance of regular self checks until it’s too late, and I know this is sad truth is because people don’t want to talk about their testicles. Testicular cancer is highly treatable, especially in its early stages, but that does no good if men simply aren’t aware of their own risk. We can’t let these conversations about testicular health, no matter how awkward they might be, get brushed aside because society feels uncomfortable discussing testicles.

My goal with ABSOT is and always will be to bring awareness to this disease and to discuss it openly with the hopes that it inspires others to do the same. I recently joined the Testicular Cancer Awareness Foundation Ambassadors program to help continue working towards this goal. I don’t have all the answers, but I know testicular cancer awareness and open discussions about men’s health is a mission that needs to be important to all people. Simply put, testicular cancer does affect everyone, not just men. It affects anyone who has a father, a brother, a husband, a son, or a male friend.

Here's my challenge to you: Share this blog (whether it's this post or the whole site) with two males that are important to you and encourage them to do the same. We need to get more information into the hands of the men that lives can be saved by having more frank discussions about this topic.

Will you help me get the ball rolling and shed some light where the sun don’t shine?

Monday, April 10, 2017

CC18: Two Months Later

It’s been a little over two months since I completed chemotherapy. Since then, I’ve had many physical and mental changes. My original plan was to write this in a “Where I was on the last day of chemo,” “Where I was one month after chemo,” and “Where I am today” format,” but I am struggling to remember back that far. One of my Twitter colleagues who also faced cancer told me that I would have difficulty looking back and remembering things. I now understand what she meant.

I'm able to run now, but it's
not necessarily easy
Even though I am having a hard time recalling anecdotes from two months ago, I feel like a lot of my cognitive function has returned. Sometimes I still struggle with speed of word retrieval, but the right word eventually comes to me. Occasionally, I forget what I was about to do or get highly distracted, but I chalk that up to me just being me rather than latent effects of chemo brain. I’m still finding writing down to-do lists on sticky notes or Google Keep is a really good way to make sure I get everything accomplished.

One of my biggest frustrations during chemo was not being able to focus long enough to read. Thankfully, this ability returned much quicker than I expected. I have now read eight books since the middle of February (technically three were audiobooks, but that still counts). I found “easing my way” back into reading was hugely helpful. I read two books that were in the 100-200 page region, then a 250 page book (which was about Iron Man so my inner manchild rejoiced), and now I’m working on a 450 page book. Taking baby steps to get back into it helped me feel successful and allowed me to practice focusing on books again.

Another issue that I dealt with immediately after chemo’s completion was feeling worried about my health. For now, I am feeling much less anxious about cancer than I was in the beginning of March. I know this will ebb and flow as I go through the first year of remission (and beyond). My next scan isn’t until June, and I wonder if my anxiety will spike again then. I have started going to counseling, but talking about cancer hasn’t been the focal point yet.

I got to travel to my undergrad college to present
My nausea during chemo was well-documented (warning: don’t read while eating rice). The unsettled feeling that I had even a month after chemo has more or less subsided now. After finishing chemo and no longer getting those sweet, sweet intravenous anti-nausea meds, I had to rely pretty much exclusively on my compazine (my main anti-nausea pills) to get me through the days. Eventually, I switched to mints and ginger drops to help calm my stomach. Dr. Maurer had also told me that some of my nauseous feelings might be tied to anxiety, and accepting that seemed to help me move past it. Now, I suck on a mint or two every so often as the need arises, but it’s not a regular occurrence anymore.

On the topic of pills, I completely have stopped taking my Ambien, which was a necessity during (and even after completing) treatment, as one of the side effects of the cocktail of medications I was on was sleeplessness. I tried to stop cold turkey (which is a really weird expression because I love cold turkey sandwiches) soon after finishing chemo, and that didn’t work. I guess going from the max dose to nothing isn’t a good plan. I tapered myself off of them by going to half doses for a few weeks and then every other day. Now, I can sleep soundly through the night. I have some difficulty falling asleep, but this has been a lifelong problem. However, it feels nice to get a good night’s rest naturally. No longer having Ambien-induced weird dreams is another plus, although I did have a really wild dream last night about being in a Transformers movie. Michael Bay, feel free to call me.

Along with sleeping better, I have far more energy now. During chemo, my mortal enemy was stairs. I would need to pause on the way up or down half the time. A weekend or two ago, I loaded an entire pickup truck of firewood all by myself (my dad would say he helped, but holding a chainsaw and doing nothing doesn’t constitute assistance in my opinion). I’m also jogging after school nearly every other day. I’m not quite able to run the 6 minute mile of high school Justin, but I’m making incremental progress (high school Justin was also about 50 pounds lighter).

I can also get through school days without feeling 100% drained by the afternoon. I’ve even traveled to different places in Virginia and Pennsylvania to present at different conferences, which was something that I would have never anticipated being able to do so soon after chemo.

My hair looks pretty good in pink, too.
Perhaps the most noticeable physical change is hair regrowth. About a month after chemo ended, I had approximately 10 strands of hair on my head and what I’d term a two-o’clock shadow of a beard. However, just as my hair started to fall out seemingly overnight, my beard regrew in all its glory almost the next day. (It was closer to a week realistically.) I’ve even had to trim my beard twice since the beginning of March.
My head hair didn’t get that memo quite as quickly, but now I have somewhere between a rich fuzz and my normal length of hair on my noggin. People ask me if I’ll keep it short or go back to my normal faux hawk style. I’ll probably go back to the faux hawk when I can, but until then, I don’t mind the short style.

It’s been a winding road to recovery. I would say I’m at 90% capacity for feeling back to normal. I know there will be some bad days here and there, both physically and mentally, but I’m enjoying the good days while they are here. In another few months, I’ll do another check in post to see how things have progressed. My left testicle hasn’t regrown yet, but I’m told “that doesn’t happen and to please stop asking.”