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.

Monday, June 12, 2017

PCL6: Scanxiety and the Results

“Your scans are perfectly clean. There is still no cancer in your body on this scan.”

One of the things I hate most about scans is the waiting. If you’re reading this, I didn’t want to put you in suspense (although that is a stellar literary technique). So there you have it - I am still in remission. Feel free to click out of this post. Just kidding!

"No pathologically enlarged lymph nodes...
No metastatic disease"
I had my second follow up scan on Saturday, June 10th. In the morning, I ingested the barium solution (which wasn’t half bad, to be honest, since I went with the mocha flavor this time, though it still had the same post-scan fecal impact) and headed to my scan. While there, the nurse asked if I was experiencing any new pain or symptoms.

I had been experiencing some slight discomfort in my scrotum, but was pretty sure it was due to anxiety stemming from my scan. Nonetheless, I’ve learned that less isn’t more when it comes to medical issues, so I shared that information with the nurse.

“Is the pain in your right or left testicle?”

“Well ma’am, I only have one…”

She blushed and apologized profusely. I simply laughed and thought back to the initial CT scan in November when they asked me if I had ever been diagnosed with cancer, two days after my diagnosis. I’ve now become accustomed to being the Uniballer.

The scan proceeded as expected. Nothing really new to report.

Gosh, I'm so classy
However, my mind was racing afterwards. When would I get results? The day prior, the oncologist office had called and said Dr. Maurer needed to reschedule since he was going on a trip when my appointment was set. (I later found out that it was a surprise getaway for him planned by his wife - that man definitely deserves a vacation!)

They said he couldn’t see me until July. That wasn’t going to fly with me. I was not about to wait a month to get results. My anxiety about recurrence tends to flare up most often when I know a scan is imminent. I feel pain that might not be there and I get trapped in a dungeon of despair. Thoughts of having to go through chemo again flooded my mind. I began making mental lists of what I would need to do if there was a recurrence - contact my new school, shave my hair that had just regrown how I like it, change wedding plans, and stock up on Joe Corbis.

My thoughts were quickly escalating. I didn’t want to be like that for a month so I pressed the issue of getting to hear from him sooner. Dr. Maurer could just call me with results - I would still be happy to come in in July but I wanted to know ASAP.

On Monday, June 12th (the date of this writing and also my brother’s birthday,) I got a call from the oncology office saying they had a last minute opening at 4:30 and they asked if I wanted it. Um… Yes, yes I wanted it.

Mallory and I arrived at the clinic and were shown to a room. I’m pretty sure I’ve now been in all the exam rooms at the clinic between all my various appointments. Dr. Maurer shortly came in (and my mom joined us via FaceTime) and said the above quote. I was still in remission. What a weight lifted off my shoulders, but I still feel it’s wise to stockpile more Joe Corbis.

He showed me my scan. While lymph nodes were still detected on the scan, none were of abnormal size and the nodes are a normal part of a body. He pointed out different organs to me and even said there was a decent showing of muscle. Thank you, Tony Horton.

The next topic of discussion was my medical plans going forward. Most excitingly, I can now get my port out! This is a huge win for me, as it is really uncomfortable and annoying (especially when taller students give me hugs [which is strictly against my policy of no fun, love, or friendship in the classroom] and slam their heads into it) and I just want it out. Once it’s out, I’ll write a post about the process. Additionally, I’m going to have bloodwork done in October and a next set of scans in December (six months out from today and nearly a year post-chemo).

Dr. Maurer asked me how I’m doing, as I continue assimilating to real life. That’s one thing I really always like about him - he treats me as a person first, and a patient second. I told him I was doing better, but have been getting anxious over the past week about my scans. According to him, this is a normal part of the process and gets better with time. I would be willing to bet my left right nut that I’ll feel this same scanxiety in December, but it helps to know that I can move on when I get the good news.

Thus ends the story of scan numero dos. Although it’s a pretty straightforward and boring story, I will take that over a tale of recurrence (even though I already had some blog titles worked up, among them “Lightning Strikes Twice” and “Guess Who’s Back”). It’s the last week of school and a great way to transition into summer.

In the sage words of the wise American prophet Ariana Grande, “I got one less, one less problem.”

Wednesday, May 24, 2017

PCL5: Lessons Learned from Cancer Part I

To say cancer changes your perspective on life would be an understatement. There are physical changes, financial costs, and numerous emotional tolls that you’ll encounter along the way. For me, cancer forced me to take a good, hard look at my life. Just as I teach my students, cancer taught me many lessons.

Find What’s Important

We got our engagement pictures
redone a few weeks ago.
Thanks Amanda and Eric!
Prior to cancer, I was involved in about ten different side projects. I was like a dog chasing a ball (little did I know I was about to lose one). If something sounded like it would be a cool idea or help improve education, I went all in.

However, there are only 24 hours in a day. If I’m spending 8 of them sleeping and another 8 at work, that only leaves 8 hours for cooking, exercise, and leisure time. The more projects I took on, the more quickly that 8 hours of freedom dwindled down as I poured myself into more and more random endeavors. Because of this, I was neglecting my relationships and things that really matter, like my personal relationships and spending time with my cat (yes, I am a crazy cat man).

About halfway through chemo, I realized this. I made the decision to walk away from nearly all of these projects, which seemed hard at the time, but now, I am seeing the benefits. Ultimately, you get one shot at life (unless reincarnation is a thing, in which case I want to be a hawk or an eagle in my next life). I can’t spend all of my free time doing things that ultimately won’t have a lasting impact on my life while ignoring the people who love and support me.

This realization also pushed me to make some other big changes in my life. I’m leaving my job at the end of the year. I have been very fortunate to have a supportive school and a wonderful class this year, but the fact of the matter is I spend over an hour and a half commuting every day. (You could say all this driving drives me nuts, but I only have one.) I’m going to be working at a school that is less than ten minutes from my house next year, and that gives me more time with my fianceĆ© (who will be my wife by then), our pets, and working on spreading awareness with ABSOT.

Friendships Will Change and New Ones Will Form


This was a lesson that came very early on in my cancer journey. Initially, I only shared my diagnosis with my family and a few close friends before deciding that going public with my experience can do a lot of good for men’s health. Most of the select few I chose to tell reacted with support and love, but this wasn’t always the case. One such close friend floored me with how she responded.

Or you could also have a 87-year-old grandfather
who sends you these
I was admittedly distant from all people, including this person, while I was trying to learn how to handle this news and its impact on my life. Because of this, I wasn’t really opening up to her about how I was feeling or my plans to begin ABSOT. One evening while I was trying to share how important ABSOT was to me, she could only focus on how she felt that I was pulling away from her. She responded to a text saying, “I thought our friendship was stronger than you getting cancer.”

Pro tip: Don’t make someone feel like a bad friend while they were recently diagnosed with cancer. Worse, don’t be selfish and make someone’s cancer diagnosis mainly about you and your feelings. I understand that a diagnosis affects all, but in that moment, I didn’t need to feel like my emotions and how I was processing was insignificant compared to her own experience. Suffice it to say, I responded to her saying something to the effect that she wasn’t being the kind of friend I needed, and we do not speak any longer. It was a tough decision, but ultimately I found that this would be better for my healing process.

On the flipside, I received an outpouring of support from people who I would have considered acquaintances and complete strangers. One co-worker who I hadn’t been too close with prior to this checked on me via text numerous times a week. A new Twitter follower sent me a Beaker hat, based on a brief conversation we had about the Muppets Christmas Carol being the greatest Christmas movie of all time. Another casual Twitter follower organized a “Christmas movie drive” to help me complete The Annual Christmas Movie List. Instagram followers reached out with offers to help me during and after chemo. When the chips are down and your world seems to be crumbling before your eyes, you’ll find your people who have your back… and find the courage to cut out the ones who don’t.

It’s OK to Show Emotion


As a society, we’ve decided that men are not to show their feelings while women are painted as emotionally transparent. Cancer shows you that you can’t afford to do that. I kept my emotions in before and during cancer. On the outside, I usually appeared to be calm and collected, but on the inside was a different story.

Internally, I was thinking about dying (even though the mortality rate from testicular cancer is low), the future, and various other worries, but I never shared that with the vast majority of people around me. I felt like I was already enough of a burden that I didn’t want to add more to anyone’s plate.

A bottle can only hold so much. When I would spiral into those thoughts, I would often snap about things that weren’t a big deal. When I realized this, I started trying to express how I was feeling and why that was. If you’re going through a trying time, be open about it. Even now, I am attempting to do better with expressing how I am feeling so if I appear to be mad at something, the person knows it’s not their fault.

Read Part II of Lessons Learned here.

PCL4: Lessons Learned from Cancer Part II

To say cancer changes your perspective on life would be an understatement. There are physical changes, financial costs, and numerous emotional tolls that you’ll encounter along the way. For me, cancer forced me to take a good, hard look at my life. Just as I teach my students, cancer taught me many lessons.

Everyone Has a Cancer Story

Cancer affects nearly one quarter of the population, whether that is from directly having it or an indirect experience from a friend or family member having it. When you’re diagnosed with cancer, you will find that everyone has a story to share.

On one hand, this can be comforting. You’re not alone in this battle and you know who you can turn to. On the other, it can get overwhelming. I would get advice, sometimes unsolicited from complete strangers, that would contradict others’ advice or what my oncologist had told me. I was often confused by what would be “best” for me to do.

If I am asked now about what to expect with cancer, I always preface it by saying it’s my take on it. I’m hesitant to offer advice without being asked because I know it wasn’t something I always appreciated. Be cognizant of that - your best intentions can be somewhat damaging to a cancer patient who is just trying to survive from day to day.

Cancer Can Consume You


As I shared in my Spring Break Paranoia post, I still have a real fear of recurrence. I just scheduled my second post-chemo CT scan, and I could feel those fears pushing through again. I’m sure that everything will be fine (and that I can finally get this itchy port removed), but it’s always on the back of my mind.

Some evenings, I’ll find myself browsing the Internet and ending up on the oncologist’s website or scrolling through cancer patient forums, reading stories of people who had their cancer come back after remission. I don’t know why this is, but I normally realize that it is not helping quell my recurrence fears and put an end to it sooner rather than later.

Running a cancer blog and Instagram might seem counterproductive to not allowing cancer to consume me, but just like it’s important for me to let my emotions out, it’s important to get my feelings about cancer out on my terms and in a way that is helpful for others. Additionally, I think it’s important to have a real perspective for other potential cancer patients, since it was something I had a hard time finding.

"Survivor" is Just the Beginning

Being a survivor is hard, which is something I noticed very early on. People see the hair growing back, the energy levels returning, and other physical signs, but they can’t see inside. In some ways, chemo was weirdly easier than real life. People told me what to do and I could focus on that. I get overwhelmed sometimes with everything I need to do post-cancer, but I’d much rather have my survivor status than spending hours on end hooked up to my chemo machine.

I also don’t like the word “survivor.” It seems so final (and overused by Jeff Probst). Like many cancer survivors, I have a bracelet that says “SURVIVOR” on it in big, bold letters, but I wasn’t crazy about the wording, plus I couldn’t wear it to school, since it also says, “Love my nut.” That’s probably a one-way ticket to HR.

I decided to design my own. (Side note: Finding a website that will make a single silicone wristband for a reasonable price is insane. I ended up going with AmazingWristbands.com.) While I was designing, I used the word SURVIVE instead of SURVIVOR. ABSOT is about ongoing survival. Being told you’re in remission isn’t the end; it’s just the opening to Act II of your life. In the words of Alexander Hamilton (via Lin-Manuel Miranda), I’m not going to throw away my shot. (That’s literally the extent of my knowledge of Hamilton.)

My life was changed by cancer, which is exactly the kind of thing you'd expect to hear from a cancer survivor. In a way, I’m fortunate to have learned these lessons at 25, instead of later in life. (I would have preferred to learn this lesson by maybe losing my iPhone instead of a testicle, but zesty Las Vegas [which is how I say cie la vie]). I’ve found what’s important to me, who I can count on, and how to balance my emotions and cancer journey so I can rock this second shot at life.

Read Part I of Lessons Learned here.

Friday, April 28, 2017

PCL3: Spring Break Paranoia

Mow the lawn - Check. Move the TV out of the bedroom and back to my office (finally) - Check. Write a blog post for my teaching blog - Check. Finish that David Baldacci novel I’ve been working on - Check. Get my port flushed (since I won't get it removed til June) - Check.

I was on spring break from work, after being back for about two months. I was supposed to be a fun time, but midway through I experienced what I thought was sure to be a crisis.

On Wednesday, April 19th, approximately six weeks after being told I was in remission, my worst fear came true - I felt what seemed to be a lump on my remaining right testicle while in the bathroom. (I found it ironic that my first lump was found in the shower and now this one was discovered while using the toilet. I need to avoid bathrooms I suppose.)

Cue full blown panic mode. Cancer is never far from my mind, but lately, I had been feeling more or less normal. Optimistically, I had thought the worst was behind me, but at that moment, it didn’t appear so.

The “lump” felt very similar to the original lump on Lefty: small and pea shaped. I had difficulty finding it at times (since I did self-checks pretty much every five minutes after finding it), but the original lump in October had behaved in the same way.

I found this new “lump” in the evening, around 5 pm. Immediately, I called Dr. Maurer, but the office was closing and Lizz, the receptionist, told me he was on vacation for the week. I left a message for Nurse Jenn, which probably came off a lot more frantic than I meant. I also called Dr. Dumont (my urologist), too, but his office was closed as well. As always, my timing was awful.

I tried to maintain a steady resolve, but it was hard. I knew there was a slim likelihood of the cancer returning, but I didn’t expect there to be any developments this soon. I had been doing self-checks nearly daily; how could I have missed something?

Right before I went to bed, I checked again. The “lump” was indeed still there. I didn’t have pain or anything, but again, I didn’t the first time either. I know that cancerous lumps are often just that - a lump with no pain or other symptoms that indicate a bigger problem.

The next morning, I called Dr. Dumont’s office again and got through. They scheduled an appointment for 1:50 that day. About an hour later, Nurse Jenn called back. She had gotten ahold of Dr. Maurer (despite him being on vacation; sorry for interrupting!) and he ordered an ultrasound at 12:30, with orders to read it on the spot. This would be perfect - I had the ultrasound and then my appointment with Dr. Dumont. No waiting games this time.

The ultrasound was very similar to my first one, with two main exceptions. First, I was checked by two people instead of one because of my newly-minted remission status. Second, they didn't seem as worried as the tech in October did. I took that as a good sign, but I was still sure there was something in there.

After the ultrasound was finished, I met with Dr. Dumont, who did an examination of my testicle as we waited on the ultrasound report. He said he didn’t feel anything abnormal and asked me to check again. I did and had difficulty finding anything, too. It was strange to me because I had clearly felt a “lump” the prior evening.

He excused himself to check if the report had reached him yet and came back to get me a few moments later. He had my original ultrasound of my cancerous left testicle up on the screen. To be frank, it looked very gnarly. If you could imagine taking a ball of aluminum foil, crinkling it more, rolling it in mud, stomping on it, and then forming it into a ball, that’s what my testicle had looked like. I hadn’t ever seen those images, so it was shocking to me. He then showed me the current scan (which appeared to be smooth and egg-shaped) and said he didn’t see any abnormalities. The radiologist’s report hadn’t been completed yet, but in his estimation, he didn’t see anything wrong.

Much like Dr. Maurer had said that some of my latent “side effects” might be psychological, Dr. Dumont said that I might be doing self-checks too often. It’s recommended to do them once a month, but I’ve more or less been doing them daily since I finished chemo. He said, “It’s good to be aware and I’m glad you are. But perseverating on one thing for too long can be almost as damaging as neglecting it.” (Context clues helped me to figure out what perseverating meant.)

One of the things I have liked about Dr. Dumont from the start is how he gives it to me straight. I needed him to say that. I’ve been trying to be proactive, but perhaps I’ve been hyperactive in trying to detect any new cancer. I don’t want to have cancer again, and I definitely don’t want to do any more chemo. However, I think I’ve let my concern turn into paranoia, which is probably typical considering what I’ve been through. Next time I go to counseling, I think it’ll be time to talk about dealing with the aftermath of cancer more so than I have been.

As I pulled out of Dr. Dumont’s office, I gave Nurse Jenn a call to tell her my appointment was done. She had just received the radiologist’s report - there were no signs of cancer in the ultrasound. I thanked her and said I was probably just worrying unnecessarily, to which she said she understood.

I’m happy that this blog post will remain as a single post, rather than a series of posts detailing another surgery and more treatment. It did open my eyes to how quickly I can now start worrying (which surprised me because I was pretty level-headed through everything) but I’m glad it was able to be taken care of within 24 hours. It’s even better that my cancer scare had a positive outcome.

I know I felt something in my testicle the previous night, but I have no idea what it was. As of publishing this, I still don’t feel anything abnormal. However, I will heed Dr. Dumont’s advice and only check myself weekly instead of daily. He suggested, “Mondays suck anyways, so make that your check day.”

Thursday, April 20, 2017

PCL2: 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

PCL1: 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.”

This is the first post in a new series - Post Cancer Life (PCL).