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The Cruel Irony of Cancer Remission

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July 30 marked six months since I finished chemo and rang the bell. In April I wrote about my recovery two months post-chemo. Six months is another significant milestone, so I decided to write another update.

In April my nausea and fatigue were nearly all gone, but I still had some slight issues. Today I am completely free of both symptoms. I have not felt nauseous for at least three months and my energy level is way up. I’ve completed about six weeks of P90X, which is a more challenging strength-building regimen than I had done in the year or two prior to diagnosis. I have also been running more regularly, cutting over three minutes off my mile time since April.

Justin B bachelor crew

I just returned from my bachelor party with my groomsmen, which involved three days of camping, hiking through a state park, exploring a Civil War battlefield, successfully completing an escape room, and playing paintball and dozens of rounds of Kan Jam.

Am I exhausted? Yes — but I am glad I had the energy to do all of that.

Another big change from where I was in April was I recently had my port removed, which is freeing. I constantly find myself touching the spot where it was to remind me it’s really gone. The actual incision site is still covered with medical glue, but it appears the scar is healing nicely. The scar on my hip from my orchiectomy (which was nine months ago) has faded into almost nothing.

Justin port scar photo

Another physical difference is my hair has completely regrown to its normal length. I even had to get a haircut recently since it was getting too long and ratty.

While losing my hair helped me realize my outward appearance is not the only thing that makes up my identity, it definitely helps me feel more like myself when I’m able to spike it up again.

While the color and texture of my hair initially seemed to be completely different, it’s getting back to normal. Before chemo I used to have one strand of hair in the back of my head that was frizzy and curly. No matter how many times I cut it, it always grew back that way. However, since chemo, the strand has not reappeared.

Some people get chemo curls; I got chemo straightening.

Justin Birckbhichler close up smile

Despite these positive changes, some latent negative side effects are still lingering:

Water still tastes funny to me, but adding lemon helps tremendously.

I’m not sleeping as well as I was before chemo, but I have also been going to bed later and later. I think I’m resisting going to bed early since I was basically forced into bed by 7 p.m. during chemo, and I want the time back.

I have some minor memory issues and am still going strong with Google Keep to-do lists and random stickies to help me keep track of what I need to get done.

However, the latter two effects may not be due to chemo at all — they may be related to my ongoing struggle with emotional healing. As I outwardly regained my sense of self after chemo, I found the internal battle to heal continued to rage on.

I’m not the person I was before chemo. I’m not the person I was during chemo. I’m not even the person I was directly after chemo.

I am a changed person.

While many lessons learned from cancer were for the better, I really find myself struggling to stay upbeat and positive at times.

To be honest, I am terrified of a recurrence. While I am not performing self-checks daily like I was in April, I still find myself habitually starting to perform one. Just recently, I thought I felt another lump. Sometimes I feel pain in my scrotum. Are these symptoms real concerns or are they the paranoid thoughts of a cancer survivor?

I don’t want to be the Boy Who Cried Wolf, but I also want to have constant vigilance. Finding that balance has proven more difficult for me than I thought.

I also struggle to stay even-keeled in my attitude. I often go through drastic mood swings. One moment I will be totally fine and the next I’ll become very sullen and agitated about the smallest things. I know it’s hard on those around me, and I don’t mean it to be. It’s something I’m aware of and am still working on.

A lot of these side effects might seem like the typical issues most 20-somethings deal with, but for me, it’s different. I don’t expect someone who has never had a life-threatening diagnosis like mine to understand what it’s like to battle cancer, nor do I expect them to cater to me as I process and heal. My whole life was uprooted in one fell swoop; 2016 was my year — engagement, new house, new job, tons of professional growth opportunities, a new puppy, etc.

When I got my diagnosis, it all came grinding to a halt.

It’s hard to come to terms with this major disruption in my life and move on. Life after cancer isn’t easy, and much like PTSD, its effects sometimes take me by surprise. You don’t know what it’s like until you’ve been there.

I wouldn’t wish this experience on anyone.

Though it has been tough at times, 2017 has brought a lot of good, too — remission, a new car, another new job, a second clean scan and our upcoming wedding.

But at the same time it’s much tougher than 2016 was. The physical difficulties brought on by cancer are now pretty much gone, but my experience continues to be hard on my internal self. People tell me I should be happy and excited because I am in remission and survived, but I find it hard to be at times. I don’t really have a real reason for it other than the internal healing is much harder than the physical.

I suppose there is no real timeline or recommended course of action to help overcome this. I was in therapy for a few weeks, but I never seemed to talk about cancer during sessions. The thing is, my downward spiral about cancer isn’t something I can talk about at a regularly scheduled time. It comes and goes as it pleases, announcing itself unexpectedly, much like the cancer did.

I struggled with mental health in high school to the point where I was in weekly therapy and on antidepressants. I don’t think I’m quite at that stage yet, but I’m also not ashamed to ask for serious help if it gets there. I know having depression at such a young age gives me a higher likelihood of experiencing it later in life, and I imagine a traumatic event like having cancer further raises the risk.

When I am fine it seems trivial to talk about. When I am experiencing an episode I don’t want to talk about it. When I need it most I can’t bring myself to verbalize what I’m feeling.

I know, that’s such a cop out. I tried to talk about how I am feeling with Mallory a week or two ago, but I broke down in tears. When she asked me why I was crying (which is an extremely rare occurrence) I said I didn’t want to talk to her. One of the few people in the world who loves me unconditionally, and I was shutting her out. The next morning I was fine but we still never discussed why I was so upset the previous evening.

This is the cruel irony of cancer remission. I want to talk about it, but at the same time, I don’t.

I’ve heard from many people how my blog, “A Ballsy Sense of Tumor,” has helped them, but I think running this blog has helped me tenfold. I can let words I will never say out loud flow when I’m writing for the blog.

I’m well aware this post started as a “Hey, these are some great changes” and took a hard left into “My psyche is shattering” and I’m not providing any real action steps for myself or for others. I don’t think I have any action steps right now; I just need to ride this out until I figure out what to do next.

My posts are generally written with a witty/happy theme, but I do want to make it a point to always share the full truth of this journey. It’s not always a ball (pun intended) to be a cancer survivor, and I think it’s important for people to know.

For now, I’ll try to keep my spirits up, but I also recognize that it would be more damaging in the long run to always try to mask how I am truly feeling to people who care about me.

cupcakes and pizza

Well, that’s a really cheerful post. I’ll end on a positive note. Here’s a testicular cancer joke I found on the web:

“A testicular cancer patient sees a urologist to schedule an orchiectomy. The doctor tells him the operation will cost $4,000. The patient asks him if there’s any way he can get a discount. The doctor answers, ‘Well, I could do two for the price of one’.”

This post was originally published on A Ballsy Sense of Tumor.

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Originally published: August 28, 2017
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