Tuesday, January 30, 2018

PCL23: Twelve Months Later

Twelve Months After Finishing Chemotherapy, I Was a Changed Man

Although it seems like ages ago, today marks twelve months (also known as one year) since I rang the bell and completed my chemotherapy. This time last year, I was apprehensive - had the chemo worked? Would I be cancer free now? When would the side effects end? Would my long, luscious locks grow back?

Spoiler alert: to answer all of those questions, yes, yes, in a few months, and yes.

I wrote “progress updates” at two months and five months (meant to be six, but I counted wrong) post-chemo. When preparing for today’s update, I reread those posts. I was struck how different in tone they were. While I was still experiencing a number of physical side effects two months after chemo, I was seemingly okay mentally. The inverse was true for the five month update - very few physical side effects but a lot of emotional turmoil.

My physical healing is back to normal

My selfie game remains strong
Today, I am revisiting those “progress updates” for a twelve months later post. Physically, I’m 99.999% back to normal. I have not had any feelings of nausea since the perfect storm of the all-you-can-eat pizza buffet and imbibing on the night of my the bachelor party, but that’s not related to chemo in any way. My hair has completely grown back (but I’m contemplating a new style now). My fitness levels are through the roof - I recently ran a mile in less than seven minutes and thirty seconds, my bench press max is higher than it was in college, and I’ve lost over thirty pounds (the ten pounds I gained on chemo, the five on the honeymoon, and then some), making me the lightest since moving to Virginia in 2013. I know these sound like a lot of humblebrags (isn’t that the whole point of social media?), but it’s also a way to show my physical progress.

The only real remnant of a physical side effect (accounting for that 0.001%) is my continued disdain for plain water. This first stemmed from the metallic taste in my mouth during chemo and continued through recovery. I honestly have no idea if that’s even related to a lingering side effect, but I only take my water infused with lemon or cucumber… and shaken, not stirred.

My mental health is doing better

On the mental and emotional side of things, I’m somewhere in between the two and five month updates. One of my biggest frustrations during chemo and beyond was my inability to read a book. I ended up completing 55 books in 2017, 3 fewer than 2016. Honestly, I was disappointed in myself that I didn’t match or surpass the previous year, but I also had to take into consideration that I only read for ten and a half months in 2017 versus nearly all year in 2016.

Now, I can read books with ease, finishing over ten books since the start of 2018 (with a goal of 60 total this year). It seems like a random achievement to strive for, but it’s an important one to me to prove to myself that my brain is fully functioning again.

Overall, chemo brain seems to have less power over me, as I have significantly less difficulty with memory and word retrieval now. At times, I do have some issues remembering what I was trying to do a few minutes prior. Usually, I just retrace my steps (sometimes literally), and that triggers my intention. Google Keep (I find it weirdly awesome to check things off my to-do list) and Alexa still keep me straight on a regular basis.

Upping from 10 mg to 20 mg in early Jan
Emotionally, I’m doing better than I was doing at five months (that was quite a dark place in hindsight), but I’m not quite to the level of the positive and chipper attitude I had two months after chemo. As I’ve shared, I started on antidepressants after my last CT scan, and I’ve been on them for about a month now. They say it takes about six weeks for them to fully take effect.

My doctor recently upped my dose to 30 milligrams a day instead of 20, since I was not feeling any different after four weeks. Since beginning the increased dose, I am noticing that my overall mood is improving. I am hoping that this is due to finding the right pill and not just a placebo effect. As time goes on, I will share another post focusing more on my experiences with these pills.

Being a cancer survivor is a complex journey

Overall, I’d say that twelve months later, I feel physically great, and my emotions are on the upswing for now. I’m sure the physical side of things will maintain its strength (pun fully intended), while the emotional side will be up and down as I travel through life. I wrote a post in October, to commemorate the one year anniversary of my orchiectomy, about how my goals, perspective, and focus have changed since beginning this journey, and it still holds true. I’m looking forward to next January’s edition of this post and seeing where life has taken me by then.

And for the record… my left testicle STILL has not grown back.

But I still have hope, even if that “definitely won’t happen naturally and we’ve asked you repeatedly to please stop calling us, Mr. Birckbichler.”

A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version

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Tuesday, January 16, 2018

HBA17: How to Support a Caregiver

A Cancer Diagnosis Doesn’t Simply Affect the Patient - It Affects the Caregivers, Too. 

Since the beginning of ABSOT, I gave voices to my loved ones in the Healthy, But Affected series. My mother and wife (then-fiancee), Mallory, were my two primary caregivers during treatment. Without them, I couldn’t have done it. Being a caregiver isn’t easy, so here they share some of the things that helped them get through the experience.

Support them at their workplace as they take on a second job as a caregiver.

Mom: “During Justin’s treatments, my job was very good to me – never made me feel guilty about going to Virginia for weeks at a time. We had a sub who did a great job and my boss never made me feel bad about missing so much work. The parents of the preschoolers really made me feel good when they would ask about Justin. They all understood why I needed to be away from the preschool and no one ever made me feel bad for not being there.”

Mallory: “My school administrators were very supportive. It was never a problem for me to leave early to take Justin to appointments, and they actively wanted to be kept in the loop with Justin’s status. If my grade level team noticed I was having a bad day, they would offer to take on some of my extra responsibilities, like recess duty, so I could take a moment to myself to breathe.”

Take things off their plate.

A bald rose between two thorns
Mallory: “Both Justin’s and my school organized for meals to be delivered, which was a blessing since Justin is the primary cook around our house, and he didn’t always have the stamina to cook. Neighbors chipped in to help with mowing the lawn, shoveling the driveway, and getting groceries for us, so I could focus on helping Justin. Justin’s mom would also help take care of him while I took care of the house, or vice versa, and it was extremely helpful to have two people managing the situation.”

Mom: “A group of friends organized who would bring food each week to my family in PA. It took a burden off any one person (or my family), and I think it helped people feel like they were doing something to help when there was little else they could do. I appreciated that the house was in good shape when I would come home for a week or a weekend - my family that I left behind at home really stepped up their game and took on the tasks that I generally do.”

Ask about their feelings as a caregiver, too.

While my mom said that people would ask her how I was feeling and Mallory said mostly close friends and family members would ask how she was doing, my little sister, Courtney, had a different perspective.

“When Justin was diagnosed, I started to tell people. After sharing, people began to ask me, ‘How’s Justin?’ or ‘How’s your brother doing?’ While it was very nice to ask how he was doing since he was the one doing the real work and the real fight, rarely was I ever asked how I was doing.

Honestly, I was not okay. I was 16 years old, and my older brother, who is only 25, had cancer. How in any way would I be okay!?

I was up in Pennsylvania over 3 hours away from him, and I didn’t always know what was going on. To make it even harder, since our mom was down in Virginia as his caregiver, I couldn’t even talk to her about it.

A cancer experience is primarily focused on the patient, and, in my experience, it seems that not as much thought is given to the family member of the cancer patient, especially if they’re not an immediate caregiver. Everyone is nice enough to ask how the cancer patient is doing, but if I counted how many times I was asked how I was doing, I could use one hand. This time was really hard for me, and no one seemed to care to ask about me. While Justin was the one going through it all, he has always been my best buddy and I was being affected by it in a different way.”

Small caregiver gifts go a long way.

: “Some of my friends put together a gift basket for me filled with things to do while sitting for hours at chemo or for my long drives to Virginia. Things like books, movies, books on CD, nail polish, lotions, bath bombs, coloring books, colored pencils and snacks. I loved coloring adult coloring books at chemo as it passed the time very quickly. Someone let me borrow their entire DVD collection of Downton Abbey, and that helped fill the time. Another friend gave me a gift certificate for two massages, which really helped me relieve stress.

Mom rocking out while coloring
While the massages helped provide physical relief, one of the most symbolic and special things I received during Justin’s treatment was an anchor charm for my Pandora charm bracelet from his dad. He said I am the anchor of this family. That meant a lot to me because I felt so torn in so many directions – I knew I wanted to be able to help Justin, but I also knew I was leaving the rest of the family behind to do the things I normally do for them. I had guilt when I was away from them and guilt when I was away from Justin. By Dad giving me the anchor, it made me realize that I was the anchor of the family and was needed everywhere, but I was doing ok by helping everywhere.”

Mallory: “I got a bracelet from Justin’s aunt that said, ‘Courage and strength,’ which helped me find a symbol of strength. Some co-workers got gifts for us to help give us something to do when Justin was having a good day, like a movie night basket. I also enjoyed coloring books, as they helped me to relieve anxiety in a calming way.”

Accept that cancer sucks, and it’s ok to say that to the caregiver...

Mom: “One of my good friends once told her after she had a stillborn that she needed to hear people say “this sucks,” rather than always hearing positive comments. Don’t get me wrong, positive comments are good too, but every now and then, it is ok to be down, and it is ok to hear that ‘this sucks’ because it really does. I have tried to remember that ever since she told me that she needed to hear that sometimes. So tell the patient that it is ok to have down days, and realize yourself that you can’t be positive all the time. But also my dad’s voice is always in my ear saying “just tell me what I have to do to take care of this and I will do it,” so I know I often said that during the course of Justin’s treatment.”

Mallory: “One of Justin’s former co-workers sent me a card that basically said that and it was nice to see that it’s ok to be angry about cancer. A colleague at my school even offered her classroom (which is secluded from the rest of the school) as a place I could come and scream to let out frustration. I never took her up on that offer, but it was nice to know the chance was there. People understood and embraced my feelings and never made me feel bad for saying when things weren’t great.”

...but remember to encourage them to find silver linings where they can.

Mom: “In a weird way it was a blessing because I feel like Justin and I got closer during that time and I also got to know my daughter-in-law much more than most mothers-in-law ever get to know their son’s wife. And she still even seems to like me after spending all those months together!”

Mallory: “I really got to know my mother-in-law better and now we have a deeper connection on a level that not many people do. [Author’s Note - I can attest to this, as they have a constant group text that I am needlessly included in]. Another silver lining was that I was able to find enough strength to pull myself together and let go of my worries and fears during the treatment process.”

While many of my posts are from my perspective as a patient or survivor, it’s equally as important to recognize the efforts and struggles the caregivers face. I’d like to thank Mom, Mallory, and Courtney for sharing their thoughts here, and I hope their words help you support a caregiver you know. 

A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version

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Sunday, January 7, 2018

HBA16: Courtney's Speech

I'm Not The Only Birckbichler Who is Passionate About Testicular Cancer Awareness

Recently, my little sister (who isn’t so little anymore, but I refuse to accept that) gave a presentation to her class about testicular cancer. I’ll let her explain it more in her words below, but since she did such a good job with her original HBA, I asked her to write a piece about her speech. 

What can I talk about?

I had an assignment to give an informative speech for senior English, and one of the requirements was to pick a topic that you felt that you were an expert on. This requirement made my decision hard because I don’t feel that I am an expert on any one topic in particular.

When she's not talking about balls,
she's hitting field hockey ones
as a member of the All Division team 
and captain of her high school
I decided to do my speech on testicular cancer and men’s health because of Justin. Since I look up to him and his efforts to spread men’s health awareness, I thought, “Why shouldn’t I help?” Even if it is only to twenty people in my class, it’s twenty more people that now have the knowledge they didn’t have before.

My four minute speech, which included important facts and statistics about men’s health, testicular cancer, and why no one should be afraid to talk about it, went off without a hitch, earning me a 98%. Following the speech, I handed out self check cards to all the boys in my class.

My reflections on talking about testicular cancer awareness

When I look back on this experience, I think, “Wow, I am proud of myself for discussing men’s health in front of my class.” This thought is followed with, “Wow, that was really weird to talk about men’s health and testicles in front of my class!” Being a girl made it somewhat uncomfortable to talk about this subject, but the more I spoke about it, the more comfortable I became. By the end of the speech, I realized I was no longer afraid to talk about men’s health with my classmates.

Now, I don’t think I will be nearly as afraid or uncomfortable to talk about men’s health and testicular cancer. Being a female should not make you afraid to talk about men’s health, as it could save a life. Going forward, if I have to do another assignment where I can choose the topic, I think I will choose to report on testicular cancer or men’s health again. Even if it is not an assignment, I would be open to talking about this topic again.

A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version

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