Saturday, July 1, 2017

PCL8: Six Months Later

Six Months After Finishing Chemotherapy for Testicular Cancer, I Reflect on My Physical Healing and Mental Health

June 30th 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.

Physical differences as a cancer survivor

The bachelor party crew, pictured here in 
our natural savage state
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 of my mile time since April. 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 that I recently had my port removed, which is freeing. I constantly find myself touching the spot where it was to remind me that it’s really gone. The actual incision site is still covered with medical glue, but it appears that the scar is healing nicely. The scar on my hip from my orchiectomy (which was nine months ago) has faded into almost nothing.

Hair regrowth post-chemotherapy

Another physical difference is that 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 to realize that 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, that strand has not reappeared. Some people get chemo curls; I got chemo straightening.

Haircut selfies
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 7:00 during chemo, and I want that 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.

Mental health after facing cancer

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 that 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 that it’s hard on those around me, and I don’t mean it to be. It’s something I’m aware of and still working on.

Port removal scar
A lot of these side effects might seem like the typical issues that 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. As I said in the second post on ABSOT, 2016 was my year - engagement, new house, new job, tons of professional growth opportunities, a new puppy, etc 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.

Looking forward into 2017

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 anti-depressants. 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 that 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.

Writing as a cancer survivor helps more than just my readers

Have some pizza for enduring this post
I’ve heard from many people how ABSOT 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 that this post started as a “hey, these are some great changes” and took a hard left into “my psyche is shattering” and that 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 next post will most likely be more aligned with the generally witty/happy theme of ABSOT, 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 that. 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.

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’.”

* Turns out - that was five months. Oh well, close enough. Thanks, chemo brain. 

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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  1. Thank you sharing the ramifications not only physically, but mentally after cancer and treatment. Everyone seems to think you get "all clear", "remission" and you just pick up where you were 8 months, a year prior.., but it is NOT usually like that.
    Will share with Grant, espeically the pizza picture.

  2. I'm continuing to read your blog and continuing to think of you through all aspects of your recovery. If there's one thing I've learned, it's that healing always takes time and rarely takes a straight path...pretty sure the ups and downs and mixed feelings are completely normal. Hang in there!

    1. Thanks for the continued support!

      (PS - I got real far behind on comments. Sorry!)

  3. If you're going crazy, then you're in a decent company. I didn't have to have chemo, but just a diagnosis is enough to keep one on their toes about a reoccurrence. Just a head's up, though -- I had a scare several years ago that had me checking almost every week. I swore up and down that it was sore down there. The doc said "Yeah, probably because you're twisting stuff up so often!" I guess over-checking can make things tender!

    Next month will be 6 months from my orchiectomy, and yes, the psychological stuff is just starting to get better. I'm no longer dreading upcoming urologist appointments and my wife and I are talking about trying to have kids. Even though I'll get an ache from my hip scar every so often, I know that it's part mental and part all the damn nerves they probably hacked up down there to save my life.

    Thanks for sharing, buddy! And mazel tov on your marriage.

  4. Lots of prayers and respect your way. Only the person going through a certain something understands everything about that thing. You article was very awe-inspiring.

  5. Justin, thank you for sharing. I started following you on twitter shortly after my lumpectomy. I am also a teacher, dealing with cancer. I finished my Chemo end of 2016, radiation in March of ‘17. I am still on all kinds of hormone blocking drugs and clinical trials, but got the first clear scan in April. I tell you all this to say that the biggest struggle I am currently having is the emotional one. I am NOT who I was a year ago, or two years ago. I don’t know exactly who I am now and I am grieving for all that I Iost, for the person I was that I will never be again. At the same time having cancer was life changing in positive ways. It helped me really examine my life and priorities. I am trying to enjoy every day, but often I cry for no reason. (Totally not my typical behavior, I am more of a smart ass who constantly makes light of difficult situations) it helped tonight to hear someone experiencing similar things in their recovery. Thank you for being willing to open up and share your ongoing journey. Stay strong. You are not alone.