Saturday, December 31, 2016

HBA05: Ben's Reaction

There is little argument that cancer is among the most well-known and pervasive diseases worldwide. Whether it be advertisements on television, benefit fundraisers, or passersby asking for donations, this disease is part of our everyday lives and hard to ignore. Despite this fact, for whatever reason, I seemed to think that cancer was something that wouldn’t affect someone I knew or loved. So when Justin, my best friend of over ten years, told me of his diagnosis, I was in complete shock. In an instant, memories of past times together flashed before my eyes and I had so many questions. What was the prognosis and in what stage was the disease? What would be the next step of action? I was scared for my friend.

I have been impressed with how Justin has handled this life-changing event. I am so thankful that he was able to detect his case early, and I urge others to check themselves regularly as well.

Ben has been my best friend since we first met in winter track in high school. Although we live hundreds of miles apart now, we are closer than ever. Shhhhh... don't speak.

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, December 29, 2016

TBT05: Letting People In

In my life, I have people cordoned off into different groups: my family, my groomsmen, my old school friends, my current school friends, and my digital friends (friends who I have grown close with online). Only about four people even knew about the initial doctor’s appointment, but most of my friends were not up to speed yet. With surgery in two days, I knew I had to tell those closest to me in case something went wrong.

No two people took the news the same way. Some were inwardly emotional, some helped keep spirits up, some said things to the effect of “you’ve got balls to do this” (dad and best friend), but all were supportive. I didn’t want pity and I didn’t feel pitied. I felt cared for and supported, which is what I needed.

Family picture circa 2015
Most surprisingly to many people was that I hadn’t told my family anything until this point. As a common theme, I didn’t want to worry them if it all turned out to be fine, especially because the first few doctor’s visits weren’t definitive. My maternal grandfather passed away from renal cancer in 2013, and it has had a lasting impact on my family. Because of this, and the other times cancer has touched our family, I am always hesitant to even say the word, let alone mention that I might have it.

I don’t often call my mom or dad, but I text with them throughout the week. Usually, when I call them, it’s not for a particularly positive reason (I got a speeding ticket, I need to go get stitches for cutting my finger open, I got another speeding ticket, I’m going to leave my job, I got a third ticket…).

When I asked my mom if I could call her, she knew something was up. She was at a field hockey game but called me as soon as it was over.

“Justin. Just tell me,” she said breathlessly.

“I most likely have testicular cancer.”

There were no tears. Just silence. I don’t know what was worse. After a few moments, she spoke again. This time it was with determination.

“Grandpa always said, ‘Just tell me what to do and I’ll do it.’ You need to adopt that attitude as your own.” Losing my grandfather at 22 was really hard on me, and three years later, his mantra had come back to me to help guide me forward.

Next up was my dad. He was home with my brother, who I didn’t want to tell quite yet. He answered his phone on speaker.

“Hey, Dad, I have a question about my table saw. Can you take me off speaker?”

“Why can’t you ask me on speaker?”

“Just do it.” I shared the news with him, but he couldn’t respond without clueing in my brother.

“Well, just read the instruction manuals. The experts know best.”

My sister, brushing my teeth
(Note: this was well before any sort of ailment.)
After the surgery was complete, I did tell my brother. As opposed to the calls with my mom and dad, my brother and I merely texted about it. Maybe this was because we are not all that close, or maybe it was because deep down I knew he was at a higher risk for also developing this cancer than anyone (especially my mom and my sister). He responded by saying, “I know we are not that close, but you are my big brother. I will always love you and you will get through this.”

The hardest family member to tell was my sister. My sister and I are incredibly close, even though she is nine years my junior. Earlier this year, she lost a friend to a random medical emergency and I knew hearing that her brother was sick as well wouldn’t be easy for her to take. I decided to wait until after the surgery was over to break the news. As I was recovering, I FaceTimed her and started right in:

“Goober, I have something to tell you. I was in the hospital today.”

Tears broke out immediately. “I hate hospitals,” she sputtered. As what would quickly become second nature when sharing my diagnosis, I began reassuring her.

“I will be ok. They think I have cancer, so they removed it. They hope they got it all, but I might need chemotherapy.”

After talking with her more, she calmed down and showed a strong resolve. We ended the call on positive spirits.

My family taken care of, I moved on to my groomsmen, who are scattered between Pennsylvania and Maryland. Time was of the essence, so a quick text message was all. I kept it brief: “I most likely have cancer. I am getting surgery to get it removed. I will keep you posted.” They responded with shock, but in solidarity.

I also wanted to let the few former coworkers who I maintained close contact with, even after departing my old school, know what was going on. The tricky part was telling them all at the same time, so one didn’t find out ahead of the others. I was able to text some of them and call one on the way to work. Again, they were beyond surprised and wanted to offer support.

My current fourth grade team also needed to be told, as they were beginning to notice that I was leaving school frequently. I shared the news with them as I left the pharmacy via a group text. I kept it brief and to the point. The following day, each of them came to me individually and offered their support. They also ensured I would be kept fed through this process. As a man with an appetite that knows no bounds under normal circumstances, that was one thing I was highly pleased to hear.

Donnie knew we'd beat this.
Although my “digital friends” are listed last here, they actually were among the first to know. Some people don’t understand the bond that can forged online between two people with commonalities, no matter the physical distance or lack of "in real life" interaction. Most of my communication with these people is primarily text based, but I probably had just as much verbal interaction with them during this period as with the other groups. Even though they couldn’t physically do much to help, they wanted to and were determined to find ways. Some of them opted to send me a care package, while one entertained me with endless ridiculously bad puns. They kept “living in my phone” and checked on me frequently.

While I don’t like to burden others with my problems, it felt good to let people in and feel the love and support of others.

Click here to read the next part of my story, in which I go under the knife for my surgery.

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.

Don't forget to follow and share ABSOT on social media by clicking the icons below!


Monday, December 26, 2016

CC05: Frustration Gone Rogue

Star Wars: Rogue One came out about a week ago (as of this writing). I am a movie fanatic and love seeing movies on opening night. There is a certain electricity in the air when a ton of movie fans geeks gather to see a new movie for the first time. I absolutely insist on seeing all the Marvel movies on opening night.

Waiting for results
But things are different now. I missed Rogue One on opening night. While I’m not as strong of a fan of the Star Wars series, I still love discussing movies with my friends, and I felt a little left out. On Twitter and Instagram, I saw many of my friends posting pictures of them in the theatre or sharing brief (and spoiler-free) reviews. This may seem like a silly and trivial thing to be upset about, but I also had a number of weightier issues on my mind.

As I said in “Losing My Hair, But Not My Control,” my white blood cell counts dropped the week of December 12th. I was tested on Monday (with a score of 0.65), Thursday (0.35), and Friday (0.44). Seeing that my cells rebounded between Thursday and Friday made Nurse Practitioner Candace and Dr. Maurer optimistic that they would continue to rise over the weekend. If they didn’t raise to 1.0 by Monday, December 19th (the start of my long week of chemo), I wouldn’t be allowed to continue treatment.

The 19th arrived and my blood was drawn. About fifteen minutes later, Nurse Jen came back with a grim look on her face. My cell counts hadn’t raised. They hadn’t even maintained. They dropped back down to 0.35. I wasn’t allowed to have treatment this week. I was beyond disappointed in myself and my cells. While I wasn’t expecting my cells to rebound completely, I didn’t think they would drop again. I kind of sat there in a stunned silence when Jenn told me.

To be honest, I was very frustrated throughout the past week. Not being allowed to have treatment moved my entire treatment plan back a week. I never thought I would be upset about chemo being pushed back, but it represents more obstacles. I’ll also have to have part of my new cycle in an unfamiliar infusion center, due to my normal office being closed for the holidays. Moving everything back also represents more time off of work (and more time unpaid, which is not something I need when I have bills pouring in).

On top of not getting treatment, I’ve had a number of general frustrations since my last round of chemo. I’m not allowed to do anything or go anywhere, because of the risk of infection. I just have to putter around the house, watching movies, playing video games, and resting. An ideal weekend yes - but this has been what I’ve been doing for the past few weeks. My strength isn’t quite high enough to go on walks, and I also don’t want to take an unnecessary risk.

Getting checked again
I was planning on visiting my students before Christmas break since I haven’t seen them since before Thanksgiving. Obviously, with my cells down, there’s no way I could be near students, since an elementary school ranks somewhere between biological weapon and petri dish when it comes to risky germ exposure. I recorded a video message for my kids, telling them how much I missed them, wishing them a happy holidays, and showing off my shiny dome. Though I know they appreciated the video, it still wasn’t the same as physically being there with them.

Another downfall of my falling cell count is that I've had to limit my exposure to my fiancee. Mallory and I have had to sleep in separate bedrooms and staying apart in general, since she had a cold a week ago. A minor cold for a normal person can become a life-threatening episode for someone with a compromised immune system, so we decided to be proactive. Still, having Mallory next to me as I sleep has always been a comfort, even if she is a covers hog. This separation, coupled with the general restlessness that is a side effect of my chemo, means I haven’t been sleeping well in general, which is another difficult thing to deal with.

Probably the most frustrating thing is that I can’t do anything to raise my cell counts. My medical team will give me neulasta (a marrow growth factor) in my new cycle to help prevent this from happening in the future, but they want my cell counts to replenish themselves first. There’s nothing I can eat or do to help stimulate cell growth. This bothers me a lot. I like to be in charge of everything. Knowing there is nothing I can do to fix this is hard to accept.

I’m aware that my issues are  still mild compared to someone in Stage IV who is in chronic pain. Still, despite my positive attitude that I strive to keep up, I’m frustrated. I feel like I’ve done everything right along the course of treatment. I’ve been limiting activity to let my body rest, eating a balanced diet, drinking tons of water, downing bottle upon bottle of Vitaminwater and Ensure to help replenish nutrients and electrolytes, and keeping up with all my meds. None of this seems to have paid off. My treatment course is very aggressive (since I have an aggressive cancer), and it’s taking a physical toll on my body.

As I walked into the office on Thursday, December 22nd to have more bloodwork to see if my cell count had raised, all of these frustrations were weighing on me. I was sure my counts wouldn't be where they needed to be. There were four days between my last two checks and that time, the levels dropped. It had only been three days since my last check, so I wasn’t expecting much. I really didn’t think my counts would raise much past 0.65.

The blood technician came back holding a sheet of paper. She handed it to me and I quickly scanned it. I was right - my levels weren’t at 0.65 or even 1.0. They had raised all the way to 1.87.

Words cannot describe how happy I was. Finally, after nearly two weeks of things not going right, there was good news. I immediately asked to see Nurse Jenn to ask a few follow up questions. She came out of the infusion center and said, “I heard your levels are up and you have some questions.”

“Yeah, I really just have one main one. Can I-”

“Yes, Justin. You can see Star Wars.”

It’s funny how quickly she had gotten to know me. I asked her to voice record her permission on my phone to prove to Mallory that we could go. I got home, played the message, and we made plans to see the movie at 2:30 that afternoon.

Even though my immune system wasn’t compromised anymore, I still wore a facemask to the theatre as an added precaution. It helped me bring out my inner Darth Vader. (Although, with a bald head and face mask, I looked more like Bane from The Dark Knight Rises.) To be quite honest, Rogue One was a bit of a let down, but ABSOT isn’t a movie review blog nor will I get into spoilers here. More so than being able to see the movie, I was most excited I could get out and do what I wanted to do...for once.

Much like for the Rebel Alliance, things were now looking up. A simple white blood cell count of 1.87, along with a plan to resume treatment on December 27th, renewed my sense of joy and positivity, which I was greatly struggling with prior to this. The frustrations that had been gnawing at me all week quickly faded into the background with the resurgence of good news.

As we headed home from seeing Rogue One, the positive vibes kept buoying my spirits. Christmas and New Year’s were just around the corner, and I was ready to celebrate the holidays with my family.

I’m currently 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.

Don't forget to follow and share ABSOT on social media by clicking the icons below!


Saturday, December 24, 2016

HBA04: Kyle's Reaction

When you first told me that you had cancer, I was in denial. I was like, no way is this real. He's only 25 and he's the only brother I have. Your dry sense of humor and your way of telling me you and Mallory were engaged also made me think maybe you were yanking my chain. But then as you kept texting and got more and more serious about it, it slowly sank in. You actually do in fact have cancer. And that's when I lost it mentally. It was like the air was pushed out of my lungs and was replaced with ice. I couldn't believe it. Even though we don't talk much anymore or hold congressional sessions like we used to and don't always get along, you're my brother and I love you. I couldn't imagine a world without you in it or a world where you're that sick. I know eventually everyone dies, but that's not supposed to be now. That's not supposed to be you. Hell, I'm tearing up again just typing this. But then Mom told me about the options and how you caught it soon enough to be in a position where you're most likely going to be ok. As weird as this sounds, I'm so happy you checked yourself regularly enough to find it. All of this has been made a lot easier knowing that you’re going to be ok. It was very tough at first (and still is to a point, knowing that, even though you're most likely not going to die, you still have cancer), but I know you're strong enough to beat it. And I'm here for you through hell and high water. But if it's low, I'm going home. Haha, I love you Justin. I'm here for you no matter what; never forget that.

Kyle is my brother. As he referenced, we are not as close as we once were, but brothers always have a special bond. I love you too, Senator.

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, December 22, 2016

TBT04: The Urologist

“So I am going to be straight with you. You have cancer.”

All things really came to a head that day. My urologist appointment was scheduled for October 26 with Dr. Dumont. In the waiting room, I was easily the youngest person by a long shot. I peed in a cup (to this day, I’m still not sure why) and waited to see the doctor.

I had starting vlogging my cancer story from this point.
My face wasn't sure how to comprehend what
I had been told.
After the customary “drop your pants and let me examine you,” the doctor looked me in the eye and said, “So I am going to be straight with you. You have cancer.”

Wow. Even though I had been believing this since I first called, it was still vastly different to hear it from a doctor. Furthermore, I had only called for an initial visit eight days prior. I went from having an area of concern to being a cancer patient in just over a week.

I did appreciate how straightforward and frank he was being with me. He said based on his brief examination and the ultrasound, he was 99% certain that it was cancer.

“Is this something I get a second opinion on?” I asked.

“In most cases, I tell my patients to get a second opinion. In your case, we don’t have time,” he replied.

The good news about testicular cancer is that it is very treatable. While 1 in 250 men will develop it, only 1 in 5,000 of them will die from it - roughly 1 in 300,00 of all men. On the whole, it has a 95% five-year survival rate. The bad news is that it is very aggressive. It can quickly spread to other parts of the body and become more complicated. Dr. Dumont said I had been smart and caught it early. Thank goodness I did catch it fast and called immediately. I had experienced no pain in my testicles, unlike Lance Armstrong who had felt pain and still put off getting it checked.

“So what’s next?” I inquired.

“Surgery. We need to remove the mass immediately. We can probably get you in tomorrow.”

source unknown
Double wow. Not only had I upgraded to cancer patient, I was also further promoted to surgery patient. Honestly, it was a lot to process. I told him I couldn’t commit to surgery tomorrow and needed some time to think. I also wanted to talk to Mallory because I had stupidly told her not to come with me to the appointment. He totally understood, but reiterated I had to move fast.

I went home and talked to Mallory. Up until this point, I had tried to minimize what was going on because I didn’t want to worry Mallory. As I have said, I didn’t want to burden people and generally hold my emotions in. This is fine for when I am frustrated at work or something minor is bothering me, but not so much in this situation. The weekend before, Mallory knew all of the unanswered questions were bothering me, but I refused to open up because I am a man and society says men can’t feel things. On the Sunday morning before my diagnosis, while I was waiting to hear back from the doctor’s office, she had said some minor comment and I exploded. It wasn’t the comment, but the culmination of everything to this point. Once I had calmed down enough, she admitted that she provoked me a bit to get me to open up. Sneaky, but effective. Moving forward, I knew I needed to be open with her, and as I told her about the surgery, I was, even though it was hard for both of us. Being open with others? That would have to wait.

At this point, I knew surgery was inevitable and necessary but it was still a lot to process. I cried during this time. I don’t cry often. I can count on one hand the amount of times I’ve cried since I’ve lived in Virginia. It was a lot to handle quickly and it kind of build up.

After talking with Mallory (having decided to go forward with the surgery), I called back and the office was already closed because of course it was. The following morning, they called back and the surgery was scheduled. I would be going under to have the mass removed on Friday, October 28th.

Now that I had more concrete information, it was time to let more people in.

Click here to read the next part of my story, in which I first share my cancer diagnosis with others.

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.

Don't forget to follow and share ABSOT on social media by clicking the icons below!


Monday, December 19, 2016

CC04: Losing My Hair, But Not My Control

I moved the Chia Pet of Uncle Si from Duck Dynasty off the edge of the tub so I had a place to sit. I had been neglecting watering it in the the past few years, and now it appeared that all of the plant growth that made up his beard and hair had died.

Who wore it best?
I posted this picture on Instagram - follow here
“You and me both,” I murmured to the terracotta structure (and then immediately thought how ridiculous I was talking to to a small statue).

It was Saturday morning, and I was preparing to shave my head. My hair had been thinning since the end of the first week of chemo, but I hadn’t been ready to shave it yet. I wanted to wait until it was coming out in chunks and was noticeably thinning.

That day happened on Wednesday of this past week. I woke up and went to the bathroom to apply deodorant. As I pulled away the Right Guard, I noticed the top was covered in armpit hair. I immediately put a hand to my head and brought it down. It had finally happened. Seemingly overnight, my hair was coming out faster than bullets from John McClain’s gun.

It was definitely a surreal experience. This sudden exodus of my hair from my follicles was paired with finding out that my white blood cell counts were now low at a doctor's appointment later that day. This meant my immune system was compromised. When I think of cancer, I think of bald people with low white counts. It was the first time I considered myself a “real” cancer patient (as if the two doctors telling me, along with the seven days of chemo weren’t enough).

That's not a rat...
Oftentimes, we hear of female cancer patients mourning the loss of their hair but don’t often hear the perspective of men. I suppose this is due to the fact that men are “allowed” to have a bald hairstyle, and many men eventually do go bald. I mercilessly tease my bald grandfather and my balding father about their lack of hair. (Looks like I was about to beat my dad to the punch.) However, even as a male, watching my hair fall out brought back a flood of memories about the impact my hair has had throughout my life. Just because I am a guy doesn’t mean my hair isn’t important to me.

At the end of high school and during the first year of college, I had what could best be defined as a “skater” haircut. This had nothing to do with my skateboard prowess (there was none) and more to do with the fact that I had really low self esteem. I simply didn’t care what I looked like, because I did not like myself very much. After a nasty breakup towards the end of my freshman year of college, I decided to cut the long style and go with a shorter style. I decided on a faux hawk.

The physical change helped my personality change drastically. I felt more confident and began to like myself more. As my self-esteem grew, my social circles expanded, and I made more friends. The haircut played a role in helping me define myself and accept myself. I finally liked myself. Looking back, it seems silly that this was a catalyst for change, but changing my hair helped me discover the best me.

This style stayed with me for the next six or so years, up to present day. My confidence (or cockiness as some would say) is not based on my hairstyle anymore, but I don’t feel like my full self on days I don’t gel it up. And now part of my identity was being taken from me against my will.

Step one of four
I decided I wouldn’t let cancer completely control my hair loss and would shave it off myself. I planned to do it on Saturday for no particular reason. By this point in chemo, every day was a weekend day. I did want to do it before my next five day week of chemo started, because I wasn’t sure I’d have the strength to do it myself.

It was important to me that I did it myself - not Mallory, not my mom, not a barber. Perhaps it was a symbolic way of proving to high school Justin that I am more than my haircut. Perhaps it was me wanting to show that I am still in control of my life. Maybe it was also just the curiosity of shaving  my own head.

On the days leading up to the haircut, I had a tendency to pull out my own hair. I’m not entirely sure why. I think it was a weird fascination. Just by running my hand through my hair, I’d come away with a handful of my own hair. I’d wake up each morning to a light dusting of hair on my pillow. Showering was even worse. By the end of two showers, it looked like a dead rat was on the floor - and that was only the hair that didn’t get washed down the drain.

After breakfast on Saturday, Mal and I marched upstairs to our bathroom for the main event. I assembled my tools - hair clippers, my beard trimmer, my electric razor, a face razor, and a head razor that looked like a racecar. I was practically a modern day Sweeney Todd.

Thanks to Dave Burgess for the recommendation of
the HeadBlade. It looks like a Hot Wheels car!
The actual shaving took about 90 minutes from start to finish. I used an attachment and buzzed my hair down to an eighth of an inch with the clippers and then removed the attachment to get down to the skin. I took off my beard with the trimmer and then went over my whole head with the electric razor. Doing the back of my head was ridiculously difficult and had to use an elaborate system of mirrors to see it. I took a shower to get remaining hair and then covered my whole head with shaving cream. Having white “hair and a beard” seemed appropriate for the Christmas season.

I removed any remnants of beard hair with the razor and moved onto my head. Using the racecar razor, I went over in it all with careful, but deliberate strokes. Finally, I rinsed the razors and took one final shower. I was now part of the Bald Brethren (TM).

What were my first thoughts on seeing myself newly shaven? “Wow, it’s really cold in here.” This was quickly followed by, “Geez, I look like I’m twelve.”

To be quite honest, I don’t feel any different, nor do I look too significantly different (in my mind at least, feel free to disagree). I know without facial hair, I look younger, but I wear a beanie through most winters anyways, so it’s hard to even tell I’m bald now. Emotionally, it sucks that I had to shave my hair. I don’t mind it too much, and I’m sure it’ll grow on me (bazinga). It is a lot less emotionally painful than I thought it would be. I would still prefer to have hair, but I’m not devastated. This surprised me, because I was honestly expecting to cry after doing it. I know I am still processing it, but it doesn’t seem to have as big of an impact as I was anticipating.

I’m chalking this up to a win against both cancer and my old fragile sense of self-esteem. This exemplifies to me how far I have come in the confidence department. 19-year-old Justin would have probably broken apart seeing my hair lining the bottom of our tub, but 25-year-old Justin is stronger. I no longer need a physical sign to know who I am or to build me up.

I am Justin and this is just one bump in the road on the way to beating this cancer.

I’m currently 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

Don't forget to follow and share ABSOT on social media by clicking the icons below!


Saturday, December 17, 2016

HBA03: Courtney's Reaction

When Justin told me he was diagnosed with cancer, it felt like a bus slammed into me. I immediately started crying because, in my mind, cancer immediately means death which I know isn't always the case but that's always my immediate thought. Once he explained how everything was going to be okay and he had surgery to remove it, I felt a little better but I was still terrified. I couldn't lose my brother. There's no way.

A little later when Mom told me that his cancer spread to his lymph nodes, my heart dropped. I knew that wasn't good at all. Mom, Dad and Justin all told me that he was going to be perfectly fine but it's so scary knowing someone you love so much has cancer and you can't do anything to help. Mom told me he has to go through chemotherapy which is another word I don't like because it's very scary. I know everything is going to be okay, but I'm still terrified that something will go wrong. Being told that your brother has cancer is one of the worst things I've ever been told. I know I have to be strong because I know he is, but it's just so hard when you don't know what's happening.

Courtney is my sister. From her birth, we have been best buddies, and apparently have taken thousands of selfies. It was not hard to find a picture of Goober and Bo-Bo for this post.

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, December 15, 2016

TBT03: The First Visit and Ultrasound

“About 1 in 250 men will develop testicular cancer. Of course, that statistic is irrelevant if you’re the one.”

Our engagement pictures were taken between the
visit and the ultrasound. On the outside, life was
looking pretty normal. 
On Thursday of my first appointment, I had to leave school early. I hadn’t indicated to anyone, aside from Brian, about the urgency of this appointment so no one thought any of it at the time. I told my students that I just needed to leave a little early for a doctor’s visit and they seemed ok with that explanation.

I got to the doctor’s office and had to fill out a ton of paperwork. Once in the the exam room, I summarized the first two parts of this blog to the nurse practitioner. In retrospect, I should have written this sooner and just printed her a copy. Like I’ve said, up until this point in my life, I had the world’s most boring medical history - scoliosis when I was younger, wisdom teeth out at 17, slightly above average height and weight, and no family history of testicular cancer (although other forms of cancer have appeared in my family’s history). After discussing with her the reason for my visit and my enthralling medical history, she told me to drop my pants so she could examine me.

To be completely straightforward, this was the part that I was most nervous about. There is usually a pretty involuntary reaction when someone touches me in that region, and I didn’t want to make it awkward. Obviously, she is a professional and I pretend I am a professional, so a situation like that may have been expected, but luckily nothing happened.

Initially, she had an issue with finding the lump. In my mind, I knew exactly where it was, and I was flabbergasted that it was hard to find, but I also know my body best. I kind of rearranged myself to find and isolate the lump. She did then find it and confirmed yes, there was a lump. She said that the next step was to get an ultrasound. Before going into the appointment, I knew that I wouldn’t have answers immediately that day, but it was frustrating that I had to wait even longer for a more defined picture of what I would be facing.

It can even develop in males
as young as elementary school.
I asked her what she thought it could be. She said, “It could be any number of things. A cyst, an infection, or it could be a cancerous mass.” Now, I obviously now know it was cancer, and I even had assumed it was cancer at that point, but it always kind of amazed me through this process that cancer was treated as an afterthought versus a definite possibility. I understand that, as a medical field, it is probably better to undersell issues like these rather than get people worked up only to find out it is not cancer. Ironically, this is kind of what I was doing with my friends by being dismissive about the situation, even though internally, I had already more or less accepted that I had cancer.

The doctor referred me for an ultrasound. I probably should have been more pushy in getting this scheduled, but I also do not deal with doctors often. She said the imaging office would call to get me scheduled the following day, and I assumed that was how things worked.

The next day, I had not received any calls by lunch time, so I called them. They said they were still processing orders and had not gotten any with my name on it yet. If I had not heard back from them by the end of school, I could call back to see if they had processed it yet. The school day ended. They hadn’t called, so I called back looking for answers. The person I spoke to said they had processed all of the orders for the day, and mine was not in there. This was my health issue and things didn’t seem to be moving as fast as I wanted. Exasperated, I sent a message to my doctor and asked if they could send another fax over. However, the office was closed by then, and they could not send one until Monday morning.

In my classroom, I have very little cell reception. To actually receive calls, you have to go outside, which does not make for easy scheduling in cases of emergencies. During morning meeting on Monday, I saw I had a missed call from what I assumed was the medical imaging office. In a totally calm and rational way, I excused myself, arranged for someone to watch my class, and politely stepped out to take the call.

Except not really. My anxiety was a little high at that moment and I was having difficulty formulating action steps. I asked the art teacher to watch them as I sprinted down the hall to make the call. I saw she was about to have a class come in, but one of my teammates offered to watch both classes. I got the ultrasound scheduled and arranged for coverage during the ultrasound time.

This was the first time I indicated to others in my school that something was wrong. I probably looked like I was running around like a chicken with his head cut off. I had been playing things pretty close to the chest up until that point, but this sort of let the cat out of the bag.

Roughly two hours after the call, I went for the ultrasound. I had not had one in recent memory so I didn’t really know what to expect. The nurse said she would step out to give me some privacy to change. I found this humorous because she was just going to come back in and see everything anyway, but professionals will be professionals.

During the ultrasound, she turned on this microphone feature to listen to the bloodflow of each testicle. The right one (the unafflicted one) sounded like calming ocean waves. His brother, the concerning one, sounded like a pack of angry wolves chasing Liam Neeson. I took this as an indication that something was wrong, but the nurse said it wasn’t super alarming. “Easy for you to say,” I thought to myself.

After the ultrasound was done, she said she had to go consult with the radiologist to see if he was going to come talk to me or if she would share preliminary results. She came back saying that she was the one to share the news. There was indeed a solid mass in there, and that meant either inflammation or cancer. Again, to bring up my earlier point, I think they were grasping at straws for something other than cancer. She urged me to call my doctor to discuss results and said they would have analysis of the CT scan by the end of the school day.

I never got a chance to call my doctor because, around lunch time, she called me. Obviously, getting a call that quickly after the scan did not bode well in my mind. She again reiterated what the radiologist report said. She said it might be inflammation, but I had no other symptoms so it seemed unlikely to both of us. I was prescribed an antibiotic to rule out the slim chances of it being an infection, but I still didn’t put much leverage into that theory. She gave me statistics on incidence rates of testicular cancer in men of my age range. About half of testicular cancers occur in men between the ages of 20 and 34. She also added that the risk of testicular cancer among white men is about 4 to 5 times that of African-American men and that of Asian-American men. These numbers were significantly higher and more serious than I expected. I was told to call a local urologist to schedule an appointment for further consultation.

More and more, I was gaining confirmation of the theory I had already begun to embrace: that I had cancer.

Click here to read the next part of my story, in which I visit a urologist.

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.

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Monday, December 12, 2016

CC03: Killing Boredom While Killing Cancer

For my chemotherapy regimen, I have 5 treatments in week one of the cycle, followed by two weeks of one treatment in each week. I had my one day of treatment this past Monday, and it was only about an hour total. Essentially, this means most of week two and three is spent recovering and regaining my strength so it can be torn back down when the next cycle begins.

While not being injected with chemo drugs every day is a much preferred way to spend my time, this can lead to a lot of downtime and boredom. Luckily, I’m not quite at the point in my treatment where my immune system is fully compromised yet, so I am feeling mostly back to normal. However, I did want to be proactive and not get sick or overly fatigued, so much of my time was spent in my house. While this was the smartest plan, being stuck in your house all week definitely can lead to some extreme boredom.

As I’ve mentioned, we moved to a new house over the summer, which was a huge blessing. Our current bedroom is probably bigger than our whole upstairs at our old apartment and about the size of one of my first apartments. Being cramped into a small apartment would have driven me nuts.

Despite my larger space, I was still in need of activities to kill the boredom. I spent most of my time watching TV or playing video games to be honest. As a teacher, I would love to say that I used my time to catch up on my reading (both personal and professional), but I would be lying. One of the smaller side effects I am experiencing due to chemo is recurring headaches and a general “fuzziness” in my brain. It makes it hard to read a novel and keep everything clear. I tried reading, but it was frustrating, so I decided to just hold off until I felt I could handle it.

With books were out of the question for the time being, another favorite way to pass the time was a prime choice. December is a good month to have all of this time off because it’s my annual 25 days of Christmas movie marathon. I don’t care for the selection provided by Freeform (formerly ABC Family), so I’ve developed my own, which includes the classics like Rudolph and Home Alone along with more obscure choices such as Iron Man 3. (I swear it’s a Christmas movie.) In past years, I’ve struggled to do all 25 movies since a full-time job doesn’t lend itself to watching a 90+ minute movie every night, but this year, I’ve been able to keep up so far. Always need to look for the good in the bad.

On top of watching movies, I’ve been writing with my kids on Google Classroom every day. I love what I do and it is really hard to be away from the classroom for so long. I’m hoping to go and visit before my white blood cells drop (because we all know kids are walking germ factories) and my hair totally falls out, but writing to them is a good substitute. Many of my quietest kids are writing much more than they verbally share, so it’s cool to see how they best express themselves. In true teacher fashion, I’m also giving them writing feedback along the way.

Other activities to quell the boredom have included building a puzzle with my mom and putting together a LEGO set, both of which are Avengers-themed. While these seem like things better suited for my students, I am essentially an overgrown child. They also have the benefit of keeping my mind somewhat sharp. The puzzle was one of those ones that have reflective foil on it. As soon as we were done, I had to cover it up because the reflection was hurting my eyes. I guess I’m still sensitive to light!

My independence also returned this week, as did my total mobility. My scar from my surgery (which we’ll talk more about in a TBT in a few weeks) finally appears to be fully healed and doesn’t bother me when I bend over anymore. The “You’re Not Allowed to Lift Things More Than 10 Pounds” restriction from my port installation was also lifted, so I could move things around. This meant that I could finally do more than uselessly lie in bed.

One day, I straightened up the house (an activity I generally hate, but felt good to have some order over the chaos that has become my life). I decided I wanted to make pizza dough another day, because it’s one of my favorite things to make and generally low odor. This endeavor was successful and it was pretty cool to serve my mom and Mallory instead of the other way around.

I also had enough energy to design and create Mallory’s and my ugly Christmas sweaters this week. I’m not going to share any pictures now (as this is an annual tradition that I treat with utmost secrecy until the time is right), but it was fun to spend some time with her watching Christmas movies and work together on them. Stay tuned for the final reveals.

I wanted to leave the house a few times, so I called Nurse Jenn to ensure that this would be ok. She confirmed that my blood cell counts were fine for the time being, so I could go out if I felt well and had no fever. My mom and I went out to run errands a few days, and it was good to get out of the house. We dropped leaves off at the dump, took her van in for an oil change, and went grocery shopping (smells here were a little overwhelming) and out to lunch (whereas my burger was a little underwhelming). Friends came to visit over the weekend and ordered pizza, which is a close second to Chick Fil A for favorite chemo food.

Overall, I felt great this whole week. I had no nausea and wasn’t very tired, and I eventually got back into sleeping through the night (even without the aid of Ambien). It felt kind of wrong not working if I didn’t feel sick, but I know internally there was a battle going on and pushing it would make things worse. My mom left on Saturday morning and Mal would be working through the week (aside from taking me to my treatment on Monday afternoon). This means I will be left by myself all week, a prospect that excites me and also makes me a bit anxious. I guess it’s appropriate that the Christmas movie for today was Home Alone!

I’m currently 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 my journey each week.

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Saturday, December 10, 2016

HBA02: Dad's Reaction

I was sitting at home when Justin left a message to call him. This was followed by a message from his mother to call Justin. This immediately raised the thought that something’s up...the issue was, was it good news or bad news?  I facepainted (Editor’s Note: My dad is still learning iPhone. He means FaceTime) Justin, and when he answered and immediately asked where his brother was and gave me the sign not to talk any more, I was concerned.  I ended the call and moved somewhere where I was alone and  called Justin back. In a deliberate and calm voice, he told me that he probably had testicular cancer. I was actually dumbfounded by what/how and didn’t know what to think.  The first instinct I had was to protect my child.  To me, that meant remain calm and let him talk and explain the situation. Externally, I tried remaining calm and offering support, but internally, you think, what does this mean? Maybe not cancer, but what could it be?

The wheels started turning after the call.  This is a kid who deserves kids. What are the implications related to this?  What are the chances of beating this?  Stay positive.  This is a young man, who overall always has been healthy. He will beat this and everything will be okay.  Something I believe and will continue to think every day. Negative thoughts have no place.

Wondering where I get my "ballsy sense of tumor" from? I definitely inherited that from my dad, and lately our hairstyles seem to match! My dad is an ideal role model and I am lucky to have him.

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, December 8, 2016

TBT02: The Call

While I had strong intentions of making calls immediately when I returned to Virginia, I already had tons of commitments to attend to first. We picked up our puppy on Sunday, I had lesson plans to prepare, and my parents were coming on Thursday. I love being the center of attention when it’s my choice, but I hate being a burden to people so I will keep things in so I don’t upset other people. I didn’t want to make Mal worried when she was having her first week with her puppy, nor did I want to tell my parents about this issue quite yet. I decided to wait until they had left the following weekend to make calls. I continued closely monitoring myself and did not notice any major changes during these few days.

On top of this whole worry, we had just moved to a different area in Virginia. My primary care physician was still in Front Royal, which was about two hours from our new home. I had to find a brand new doctor and essentially ask them to fondle me on the first time. I usually don’t even kiss on the first date.

Of course, these are all excuses related to a much bigger issue. Society has such skewed visions of men talking about their health - we’re supposed to be seen as strong and able to heal ourselves. According to a 2016 study by the Cleveland Clinic, only three in five men actually go to their annual physical, and just over 40 percent go to the doctor only when they have a serious medical condition. 53% of all the men surveyed reported that their health just isn’t something they talk about, and 19 percent admitted they will only go to the doctor to stop nagging from their significant other, a point I can usually understand.

Simply put, most guys don’t like to go to the doctor. I am no different. In fact, I could probably be the poster child for not going to the doctor unless someone forces me. Towards the end of the last school year, I was unable to talk between a sore throat and feeling incredibly lethargic. I still refused to go to the doctor because I don’t like going to the doctor. Overall, I have been pretty healthy in my life, so I didn’t really see the need to waste two hours of my day filling out paperwork and answering routine questions from the doctor. Yes, I feel fine. No, I don’t have a cough. No, I’ve still never smoked. Yes, this is total waste of my time.

However, what I was experiencing didn't feel on the same level as a sore throat. And, though I have a very healthy ego, I wasn't arrogant enough to think that something like testicular cancer could never happen to me. I started looking into statistics about testicular cancer occurrence in men of my age. What I discovered was surprising: about half of testicular cancers occur in men between the ages of 20 and 34.

I told Mallory I wanted to see a doctor, and after she was done commending me for actually agreeing to see one, she asked our neighbors for advice and they recommended a family practice close to our home. On October 18th, I made a call to schedule an appointment. Of course, being a teacher, the only time I could call was during my planning period. Calling the doctor and saying the word 'testicle' in school was a bigger concern to me than anything at that point, as sometimes students come back to grab a forgotten library book. Luckily, no one interrupted, and I made a doctor’s appointment for October 20th. It is a testament to medical practices how quickly they can get you in as soon as you say “lump in my testicle” (and also to be able to avoiding laughing while saying it).

At this point, I knew I had to let more people in on this than just Mallory and me. Not out of desire, but mainly out of necessity. The first person I knew I had to tell was my principal, Brian. The whole reason we had relocated was because I had just started at a new school. It was not a conversation I was looking forward to, but do you blame me? I had worked there for barely a month, and I was about to go talk to boss about my balls. Again, usually I don’t even mention a kiss on the first date.

Talking about your testicles is an extremely personal matter, but it's an under-discussed issue. Men will avoid talking about it out of embarrassment, especially in a professional environment, which makes sense. It's awkward. But I've overheard women in the teacher's lounge and hallways openly talking about lumps in their breasts, thanks to a widespread awareness and acceptance of breast cancer. Why should it be different for men? Having these open conversations about testicular health, along with regular self-checks, is the key to early action.

Despite my initial fears of embarrassment and unprofessionalism, I told Brian about my medical concern and said I had made an appointment for later in the week. He was 100% supportive and has been this entire time. From the start, he has said, “Nothing is more important than your health. You take care of you, and we’ll take care of the kids.” That is truly the mark of a strong principal and further solidified my appreciation for making this choice to join this school.

As the date of my first doctor's appointment drew closer, for some reason, in my head, I already knew I had cancer.

Click here to read the next part of my story, in which I have my first ultrasound.

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.

Don't forget to follow and share ABSOT on social media by clicking the icons below!