Monday, February 20, 2017

CC13: The Future of ABSOT

As I anxiously await my follow-up scan and results, I’ve started thinking about the future of my cancer awareness journey. I’ve had three months off from work to dedicate to treatment, recovery, and spreading awareness, but that’s all about to change as I return to work tomorrow.

While I have spent this time focusing my energy on educating others about the importance of self-checks and other aspects of testicular cancer, most of my time will be now be spent teaching my fourth graders about the Revolutionary War, long division, inferences in reading, and forces in science. (A great deal of time will also be spent resting in the evenings, so I don’t ruin the work I put into my recovery.)

A Valentine's awareness video
This isn’t to say I am totally going to drop my goals with awareness and men’s health activism. When you are dealt something like cancer, it changes your perspective. Minor things, like having my car refuse to start cause of a dead battery, don’t bother me. Spreading the message of awareness seems like what I need to do and will continue to be a primary focus of mine.

For this blog, I have enough TBT and HBA posts written to last until the middle of March. There are also a number of topics I want to explore in CC posts (although I probably need a new name for CC posts), including the results of my scan, what it feels like to return to work, the financial costs of cancer, and other topics. Even if I don’t blog regularly after I get the topics out that I have in my mind, I want to do check-ins after each month or so to update on what life’s like as a cancer survivor, especially for milestones like 6 months cancer-free, 12 months, and so on. I really don’t have a plan with the blog past the ideas I have and welcome topic suggestions in the comments below.

Writing this blog has helped me cope with cancer. I will be 100% transparent in sharing that lately I have been struggling to keep a positive mindset. I fear that the cancer has not been eradicated by the chemo and that I’ll need further treatment. It wouldn’t be the end of the world to need more treatment, but I just want to be a normal person again. Writing has been a huge help in sharing how I feel about having cancer, and I need to continue to write about what I feel to maintain good mental health, too.

Related to writing, another goal I have is to publish a book based on my experiences. I have no clue how to do this, nor if it would even be a valuable resource. The book would be comprised of many elements of the blog, especially the TBT posts, but there are also topics, such as my feelings towards religion while undergoing cancer, that would be brand new to the book. Theoretically, I could self-publish something through a PDF file, but I would want something physical that a testicular cancer patient or their caregiver could take with them to chemo. I have no defined plans or goals, but I know this is something I have considered since the start.

I would also like to become a public speaker on the topic. In my opinion, touring and speaking at college campuses would be an ideal place to spread awareness, since many college students are in the age group most at risk for developing testicular cancer. Again, like many of my goals in this post, I don’t have a defined plan to make that happen, but these are some bigger picture ideas I plan to pursue. I would also like to give a TEDx talk about what we can do as a society to help embrace and discuss testicular cancer freely and without embarrassment. Virginia, where I live, hosts a number of TEDx events each year, so I plan to look into that.

My full time job will continue to be teaching, but activism and awareness is something too valuable to fully drop. I know I can’t dedicate as much time to it as I have been, but I will still make the time to make it happen. One way I’m doing that is by setting up a Thunderclap campaign (which you can join here by clicking on “Support with Twitter/Facebook/Tumblr”) to help take this message to a wider audience by appearing on the Today Show. Throughout my treatment, I’ve had some incredible opportunities to share my story and work alongside some cancer awareness groups, such as Cancer Grad, the Testicular Cancer Society, and the Testicular Cancer Foundation during this time and want to continue those partnerships.

Cancer awareness is something that is now something very personal to me, and even though I am finished with treatment for the time being, I am committed to making sure I prioritize continuing the discussion about
testicular cancer prevention.

I’ve completed undergoing chemotherapy to cure my cancer. Each Monday, I’ll post my thoughts on this experience. These may be reflections on my prior week’s treatments, musings about my newly-altered life, or anything else that comes into my “chemo brain.” Follow along with all of my posts here.

Saturday, February 18, 2017

HBA12: Brett's Reaction

What the f***k?!  That was truly my first thought.  Justin worked out all through college, seemed to eat right, and drank tons of water (to the point I made fun of him).  How did he of all people get cancer?

My next thought was, ok just relax and let him know you're there for him.  Don't let your astonishment and surprise show.

After talking a bit with him and listening, I decided to do some research.  I saw that testicular cancer affects most men age 25-32ish.  Umm, I thought cancer was for old people.  WTF, again!  So the next thing I did was drop trou and started to get to know my own balls.  I've checked myself a couple times now since Justin told me about it, and I've made sure Colton, my fiance, is checking himself as well.  Justin said it was treatable if caught early enough, so it's safe to say I can spend a few minutes checking every once in a while to catch it early.

Justin may be many miles away, but I'll always be there for him just as I know he would be for me if the situation was reversed.  You got this boo!!

Brett has been one of my closest friends since my freshman year of college. Each Friday, we would spend the day together binge watching TV shows or movies. He's agreed to stand by my side in my wedding and I'll be up with him for his.

Testicular cancer isn’t just affecting me; it’s affecting those closest to me. Every Saturday, one of my friends or family members will be sharing about their reactions to my diagnosis.  I hope these posts serve as a reminder to talk to the men in your life about performing regular self-checks and their health in general. Together, we can lessen the impact of testicular cancer. Check out Healthy But Aware posts here

Thursday, February 16, 2017

TBT12: The Return

I hadn’t seen my students in nearly two weeks and I wanted to get out of the house. I also knew I had to come clean to them about my surgery.

Getting surgery was a drastic step,
but it got me on the "Did You Know"
board.
As I arrived to school, I met briefly with Brian and the school counselor, Laura. I asked them to both join me for morning meeting as I shared the news and to look over the letter I was planning to send to parents. They both said they could be there and that the letter looked good.

The students began trickling in at normal time. I was greeted with hugs and smiles. Carson, whose mother works in the building, was first. He came in to drop off his stuff and saw me. A second later, he ran out of the room to get the other “teacher kids.” When Sophia walked in, her face lit up and she rushed over to me. Many were surprised to see me with a cane, but this surprise would pale in comparison to what was to come.

The late bell rang and the video announcements rolled. Knowing that the transition would not be easy, I started in on morning meeting. I rattled off the normal, mundane things - expressing how happy I was to see them again, thankfully they earned good sub reports, and detailed the daily schedule. I shared that I would be a little slower in my movement but the cane was helpful. Brian and Laura walked in and took a seat. It was go time.

“So I wanted to tell you more about my surgery. The whole reason I had to have surgery is because I have cancer.” Somehow, being on the other side of those words didn’t make it any easier.

Instant tears from some. Bewildered looks from others. Awkward glances from most. I continued.

“The important thing for you to know is that this is curable. I will need chemotherapy, which is a form of medicine that will kill all the cancer. I need to do this so I get better. I don’t know how long I will be out, but you will be taken care of. Mr. Fitzgerald, Mrs. Hoover, the fourth grade team, and all your old teachers will support you. You have each other. I know it is not easy to hear that your teacher has cancer. I want to answer any questions you have.”

Hands shot up. Was I in pain right now? Yes, from my surgery, but not from cancer. How did I know something was wrong? I felt something wrong on my body and went to the doctor. How long will you be out? I don’t know. Will the chemo hurt? It might, but I can handle it. Would my hair fall out? It might, and that would make me sad, but I would survive. (Later, a student came up to stay that if I lost my hair, he would shave his. He has a buzz cut already, but the sentiment was cute.)

Many students already had experience with cancer from grandparents and other family members. In most cases, as with my own grandfather, cancer got the best of them. I reassured them that it most likely wouldn’t happen to me. They had their stories; I had mine. Blending stories and the straightforward facts seemed to be the best way to handle this.

A somber silence hung over the class. I gave them a moment to process.

“Right now some of you are angry. Maybe you’re sad or shocked or confused. You might be blocking it out. All of those are ok. When I found out, I went through all of those emotions. I want you to know that I am here for you. If you have questions today, ask. If they come to you tonight, have your parents message me whenever. I will answer questions you have whenever I can.”

A hand went up, “Where is your cancer?”

Crap. I wasn’t prepared for that. “It was in one part of my body and has spread to others.”

“Yeah, but where did it start?”

Brian stepped in to save me. “Some part of this cancer Mr. B wants to keep private. Your parents will be getting more information and can discuss further details with you.”

There were no more questions at that moment. I realized it was a good point to stop and try to transition to Virginia Studies. Operative word being try. We were starting a new unit about Jamestown, Halfheartedly, the students began on a Jamestown HyperDoc. I couldn’t blame them. Who can focus on the reasons for settlement when they just heard that news? After giving it an honest effort, it was time to take them to gym.

Laura reading to the class
After gym class, we happened to have guidance. The timing couldn’t have been more perfect. Laura had planned to do a lesson on cyberbullying, but switched it to discussing more about cancer. She had brought a book called The Can in Cancer, which was a cute story about a boy who went through cancer. It helped the kids relate, and she then took the students to do something secret for me. (The next day, I’d find out that they had created inspirational posters to cover our classroom walls.)

The physical teaching of the day was ok. I had to teach from a chair for part of the day, which is not my usual style. The kids quickly became attuned to my pain attack face and would rush to grab me a chair. They wanted to help me stand up and bring me things. It’s really cute and awe-inspiring to see how students will look beyond themselves to help others in need.

To put it simply, I knew telling them would suck for both them and me, but I always preach honesty and openness to them. I couldn’t be a hypocrite. Although my students were filled with emotion that day, I was more or less devoid of it. Was I masking it? Maybe for their benefit. Had I still not fully processed this momentous thing had been thrust upon me? Most likely. Despite my uncertainty in my feelings, it was the right thing to do. Paired with my budding desire to become an advocate for under-discussed men’s health issues, I knew I had an opportunity to model open medical discussions for my students.

Maybe none of them would be touched by cancer beyond me, but at least they would have a good example for how to deal with trying times.

On Thursdays, I am chronicling my journey from discovery to the beginning of chemotherapy. To read through my story up until this point, please click here

Monday, February 13, 2017

CC12: Chemo Brain

The first wings and cider!
The side effect that seems to be most long lasting and constant doesn’t make me physically sick or tired. It has more of a psychological impact. I’m talking about chemo brain. The Mayo Clinic defines chemo brain as a “term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment,” but researchers are unclear on what exactly causes it. (Based on their list of possible causes, I am guessing my experience is due to high levels of potent chemo meds.)

The best way I can describe chemo brain is that it’s similar to ADHD. I find it hard to focus on things for extended periods of time and I find myself growing increasingly forgetful. I can’t seem to remember things from day to day, but can remember specific events from years ago. Additionally, I sometimes struggle a lot with word retrieval, but oddly enough not the name of the process. A good analogy for experiencing chemo brain is Drew Barrymore in 50 First Dates. Her memory reset overnight, but she could remember things from a decade ago as clear as day.

To best illustrate some of the moments when chemo brain has struck, I have been keeping track ofsome of the more notable events:
  • One of my favorite things to do on my “long weeks” was watch food challenges on YouTube. (For those of you wondering what a food challenge is, it’s when a person tries to eat a lot of food or a certain amount of food in a set time frame. It’s oddly fascinating, and I found it helped me to live vicariously through these random people when I didn’t have much of an appetite.) I was trying to tell my mom about one of the food challenges and I was couldn’t find the words to explain the restaurant that it took place in. I said, “You know, Mom. They were eating lots of shrimp at ‘Seafood Olive Garden.’” Strangely enough, she knew I meant Red Lobster.
  • This past week, I have been going on walks during the day since it has been so nice out and I wanted to build up for my stamina as I prepare to return to work. Prior to chemo, Mal and I had gone on dozens of walks, so I knew the layout of our neighborhood pretty well. Not so much anymore. I got lost on two separate days, which is amusing since our neighborhood is just a massive loop with a few smaller loops within it. One day, I took a turn too early and didn’t realize it until I was back at my house and the other day I didn’t take a turn when I should have. I was on the phone with my sister for one of the times and she told me that I shouldn’t go on walks unsupervised. Good life advice from a teenager to her adult brother.
  • Sometimes, chemo brain causes slight bitterness on Mallory’s part. On National Pizza Day, we ordered a large pizza from our favorite pizza place. Allegedly, as I was putting away the leftovers, Mal requested that I save them for her. Apparently, I agreed to that, but the following day, I had the pizza for lunch. When Mal went to have the leftovers later in the week, she asked where they were and I said, “Um, in my belly, why?” With an exasperated sigh, she cursed chemo brain. I made up for it by making her French bread pizzas instead. Sorry, Mallory (but it was delicious). This instance of accidentally eating her leftovers wasn’t the only time, but I think that has more to do with me misinterpreting her words (and my general love of food) than my forgetfulness. However, I still maintain that I do not remember this so-called conversation about the leftover pizza.
  • Possibly my most shining chemo brain moment was from last Saturday. I was home alone and wanted to do a certain task in the kitchen. However, every time I got downstairs, I couldn’t remember what I needed to do. I tried to do different things to help trigger my memory, but to no avail. (Side note here, as I typed that sentence, I said ‘no to avail.’ Chemo brain strikes while writing about chemo brain!) On the fourth such endeavor, I decided to unload the dishwasher. I found ramekins in there, which triggered the memory. To no one in particular, I exclaimed, “PUDDING!” (I suddenly remembered that I wanted to make chocolate pudding.) This then made me crack up hysterically, as it reminded me of Dean Winchester from Supernatural. Crazy works.
Our three year anniversary was this week
These are some comical moments from experiencing chemo brain, but it does bother me to a degree that I constantly am in a state of fog. Throughout my K12 education experience, I was in the gifted program and I have always prided myself on being pretty smart. I feel like I struggle with remembering to follow through with things now, and I have to have others remind me to do things (like take medicine so I don’t feel sick, although feeling sick is another good reminder). As I’ve shared numerous times on the blog, I don’t like relying on others, but I do appreciate their help. I’m looking forward to getting back to full clarity in my brain. I haven’t read a book since the first day of chemo due to my inability to concentrate, but I am going to attempt to read a shorter one this week. I’m confident that it will be a good experience and won’t just frustrate me more. (Between writing and publishing this post, I was able to successfully read 90 pages of Chase by James Patterson. It took three attempts to let my brain focus for a long enough period of time, but it's a success in my book. Get it? Eh, I'll blame the lame joke on chemo brain.)

Because of this experience, I definitely have a stronger understanding and appreciation for my students who have ADHD and will now be more cognizant of how hard they must be working to stay focused and on task. If I find myself needing to take breaks while watching a movie, I can imagine how taxing a 25+ question assessment must be for them. In some cases, I know cancer patients can be prescribed (not ‘described’ as chemo brain wanted to say there) similar medicines to those with ADHD to help fight the effects of chemo brain, but I haven’t discussed that with my doctor yet.

But the best upside to chemo brain? It’s a foolproofway out of arguments!

“Why didn’t you unload the dishwasher?”

“Ummm… chemo brain!”

“That’s not how chemo brain works!” says Mallory, summoning her inner Han Solo.

I’ve completed undergoing chemotherapy to cure my cancer. Each Monday, I’ll post my thoughts on this experience. These may be reflections on my prior week’s treatments, musings about my newly-altered life, or anything else that comes into my “chemo brain.” Follow along with all of my posts here.

Saturday, February 11, 2017

HBA11: John's Reaction

When I first heard that Justin had cancer, I immediately was in a state of disbelief. I thought he might have been joking or something. I've never known any friends or family close to me to have cancer. When I found out he was serious, I immediately tried to look at the positive and thought that he would have surgery and it would be a tough month of his life and the bad news would be over quickly.

When I found out the cancer had spread and it was much more serious, I found myself coming to a serious realization that this was something much more serious than I had anticipated and I couldn't imagine how Justin felt. In the coming months, I know he will fight through the pain and will continue to always keep his sense of humor and wit. Cancer may be able to make him weak or not feel well, but if I know Justin, it won't ever stop him from being funny, and it won't ever stop him from having a bubbly and witty personality. Watching him keep his spirits high and continue to be the same person through the process gives me peace. I know that if he can stay himself through this process, then no matter what, this won't beat him. That, for me, is the most comforting thing through this entire experience.

Essentially, John is me, but with less awesomeness and no cancer. We were one of four guys in our major at Shippensburg and the only two to secure teaching jobs after graduation. We have maintained close contact and he continues to be jealous of all that I am.

Testicular cancer isn’t just affecting me; it’s affecting those closest to me. Every Saturday, one of my friends or family members will be sharing about their reactions to my diagnosis.  I hope these posts serve as a reminder to talk to the men in your life about performing regular self-checks and their health in general. Together, we can lessen the impact of testicular cancer. Check out Healthy But Aware posts here


Thursday, February 9, 2017

TBT11: The Freezing

Dr. Dumont strongly indicated we should look into freezing sperm for later use. He advised, “I think you should seriously consider it. Whatever you think you want will change. People change as time goes on.”

Mallory and I weren’t even married yet, but our ability to have children was potentially slipping away. We had to make a choice fast, as I knew once chemo started, there was no changing our minds.

Honestly, I'm at a loss what pictures to use for this,
so here's a frozen Captain America.
source: Marvel/Disney
This was not an easy decision to make; and it was made harder by the brevity I had in making this choice. As I’ve previously shared, I had already grappled with losing a testicle entirely. I was physically less of a man, but not entirely. One thing that helped me get through this was that I would still be able to father children if I so chose. One of the defining traits of man throughout history has been the ability to father children. Any remnants of feeling like less of a man after surgery and chemo would be expounded if I wasn’t able to have kids.

Initially, I wanted to just say screw it; let’s get on with chemo. Mallory and I discussed various options. Maybe I wouldn’t be infertile after. Maybe we could adopt kids if I was rendered unable. My cousins are adopted, and you would never know the difference. We did agree there was something special about being able to have our own genes within our own child.

I still didn’t know if I even wanted kids, but I did not want that option taken from me. My “life plan” didn’t include kids for at least the next three years. I’ve always been told I am a good teacher because I don’t have kids and can dedicate more time to my classroom because of this. There is definitely some truth to this. Would my classroom teaching suffer if I eventually had kids? Would my own biological children not get the best version of me after being in the classroom all day? I know these are common questions all teachers must face, but most don’t have to make this decision in about two hours, under duress of cancer and imminent chemo.

All things considered, we decided to freeze some of my sperm for future use on Tuesday, November 8th, the day after the post op appointment. This was kind of funny to me, as we had watched Star Trek: Into Darkness the prior evening, and a large subplot of that movie is about freezing people to continue their livelihood.

When I met with the doctor for the consultation, he said that in a lot of cases, fertility will return after the chemo. In most cases, sperm counts will increase in the 24 to 36 months following the end of chemo, and in nearly half of men, the levels will eventually return to normal. The clinic would do testing on my sample from today, and six months after the last dose of chemo, I would return. They would compare levels and see if my body had begun reproducing sperm. Not only would I have to check if they were moving, I would have to have them screened by another clinic to see if they were still working.

The less said about the actual donation the better. It was an awkward experience to say the least. While the goal of ABSOT is to bring men’s health issues into a more mainstream conversation, I don’t think this is a part of my story that anyone wants to read.

I also had to have more blood drawn to test for STDs. I had a test done back in 2014 and had only been with Mallory since then, but apparently my word didn’t count for anything. So they took more blood, adding to the hospital had taken before the surgery. In addition to being diagnosed with cancer, recovering from surgery recoverer, and and becoming a newly-anointed chemo patient, I was adding human pincushion to my repertoire.

In total, it cost roughly $2,000 for them to store my sample for 5 years. Quite the steep cost for something that may be rendered useless if my sperm production capabilities were restored. However, it was still better to be safe than sorry. As I left the donation center, I once again marveled at how quickly everything had happened. To this point, it had only been twenty days since my first call.

Cancer was forcing me to make decisions that I thought were years down the road in the matter of days.

On Thursdays, I am chronicling my journey from discovery to the beginning of chemotherapy. To read through my story up until this point, please click here.

Monday, February 6, 2017

CC11: The Waiting Game

The number one question I am asked now that chemotherapy is finished is, “So what are the next steps?”

Truth be told, it’s a lot of waiting.

I’m waiting today for my blood results to come back from the lab to see if my immune system and other levels have returned. (My white blood cells levels didn’t raise or lower since my last day of chemo, meaning my immune system is functioning, but just barely. I’ll have my levels checked again in a few weeks on February 17th to see if they have improved.)

Some family snuggle time always helps.
(Mallory was unfortunately at work.)
I’m waiting to feel 100% back to normal physically. As the chemo drugs continue to work internally and exit my body, I still feel a little off. I don’t feel nearly as bad as I did when I was becoming BRATman, but I still feel queasy from time to time. I’ve found that keeping up with my compazine (anti-nausea medicine) every six hours, consuming Queasy Pops (special lollipops used to help relieve upset stomachs,) and sucking on ginger drops has helped cut this down, as has laying on the floor. I know it will take a few months to return to normal, but I’m learning to manage it. My strength and stamina are returning, but going up and down stairs can still result in me being winded from time to time. My hair is now at a nice fine stubble (I would say about 250 grit sandpaper-wise).

I’m waiting to return to work. Truth be told, I’m not sure when this will happen, but I have a goal date. I was first aiming to return two weeks after chemo was over (on February 13th), but with the new information about my cell count, I wasn’t cleared to return until February 20th. Adding another week to my time away from work feels wise. Teaching is extremely draining on my energy levels and I’m not where I need to be to keep up with the fast-paced schedule I normally keep when teaching my fourth graders. I’m hoping that during my next blood check, my immune system is stronger to ensure I don’t catch anything from my students. While I don’t want to be away for much longer, I also need to be smart and return when my body is ready.

I’m waiting to find out if chemotherapy was effective. This is probably the hardest to wait on. I have a CT scan on February 25 and will get the results on March 2. The findings will tell me if the tumors on my lymph nodes have decreased in size, completely disappeared, stayed the same, or spread/grown at all. Right now, my biggest fear is that the tumors have grown. I want to be hopeful, but I also am honest with myself in that this is a real fear for me. The nurses and doctors all seem optimistic, but I’ll still be anxiously awaiting these results.

I’m ready to be done waiting.

I’ve completed undergoing chemotherapy to cure my cancer. Each Monday, I’ll post my thoughts on this experience. These may be reflections on my prior week’s treatments, musings about my newly-altered life, or anything else that comes into my “chemo brain.” Follow along with all of my posts here.