I’m not OK.

With that title and my medical history, I should probably start this post by saying that to my knowledge, I don’t have cancer again. Breathe easily for a little while at least. This is going in a different but not opposite direction. Tangential is the word the chemo brain wouldn’t let me think of, and at some point I might look it up and see if that’s really the right word.

In about a month, I’ll have my 14th rebirthday. For those of you not hip to the slang all the cool cancer kids use, on July 12, 2006, after receiving intense chemo that wiped out my immune system completely, I was given back the stem cells that were harvested from me at the start of the “You’re gonna need a stem cell transplant” phase of my cancer journey. It also marks the first moment I was truly cancer-free and, having yet to get cancer again, it’s kind of the first day of being cured.

So here I am, coming up on fourteen years… I was going to say “without cancer,” but that’s not exactly right. Yesterday, I would’ve said “without cancer” and I would’ve meant it. Today, I feel like I should start memorializing May 10, 2005: the last day I didn’t have cancer.

I’ve spent the last fourteen years okay with cancer. Well, maybe thirteen years, since I had the radiation and all that after the stem cell transplant. So I’ve spent the past thirteen years okay with cancer. It hasn’t been that big of a deal because it was over. I got the new stem cells, I got the radiation, I got the all clear, so I am done. I’m alive and not cancer-ridden, so it’s all over now and everything’s okay.

I’m not okay.

I don’t feel like I’ve really repressed anything, which I guess is kind of how repressing things work. Over the years, I’ve noticed an increase in stupid crying. Now some of you right now are thinking “crying isn’t stupid, it’s a valid expression of emotions!” I get that, and that’s not what I’m talking about. I’ll give you an example I’m almost positive I’ve used on here before at some point.

Back in the treatment days, I had a few bouts with pneumonia, some of them requiring hospitalization. During one such visit, I had had a rough couple of days. No one tells you how pneumonia can hurt and feel like a knife jabbing into your back.

I had a rough couple of days and rougher couple of nights, which had me awake when the Today Show was on. The movie “Invincible” was coming out that weekend, so they had Marky Mark and the guy who the movie was based on as their guests. That guy’s name is Vince. As soon as it clicked that they called it Invincible because his name is Vince, I started crying. And not like, sad little weepy sobs. Barb came in the room shortly after my realization and I was crying hard enough to concern her. “Oh my GOD! What’s happening?” she asked. With snot pouring from my nose, I manage to choke out between sobs “IT’S CALLED INVINCIBLE BECAUSE HIS NAME IS VINCE!”

That, my friends, was my first bout of stupid crying.

Usually, I’ve used stupid crying as an indicator of how tired I am. The more tired I am, the more likely I’m going to start crying because I’m watching a concert where the singer has gone quiet and the crowd is singing all of the chorus in unison. I suppose that if I were as smart as I think I am, that should have been a clue. Not the concert part, because how can you not get emotional over that, you monster? The “when I’m too tired” part. What happens when you get over-tired? Barriers start to come down.

Oh my god, I just realized that if I drank, I’d be one of the worst kinds of drunks to be around.

So I went along in my life just fine, using stupid crying as my barometer of when I need to try to sleep longer. I talked it all over with my therapist at the time and we convinced each that the stupid crying was related to accomplishments. Like the concert thing, thinking about some guy writing a song that meant something to him and then years later, hearing thousands of people repeat it back to say “it means something to us too!”

Yes, I’m stupid crying right now.

Where was I? Ah yes, I was done with cancer, I get overly emotionally proud of other people’s accomplishments when I’m tired and I’m completely and totally okay. I should probably talk about my brain right now. You see, medical science is still catching up with the personal experiences of cancer patients in a lot of ways. At least the last time I looked at things, it was. “Chemo brain” is one of those things. It’s becoming more accepted now and maybe a little more understood, but it’s oh so real.

Before cancer, my brain worked pretty well. I’m not dipping back in the smart well here, I just mean it functioned correctly for the most part. I had a major concussion back in ’97 or ’98 that really changed my moods around, but other than that, my brain was reliable. During and after chemo, my brain isn’t as reliable. I’m being reminded just how unreliable as I type this post, because two of the first things I noticed when it started happening were typing issues and word retrieval issues.

The typing issues take one of two forms. The first is just letters in the wrong order, the second is wrong words or sentences. In both instances, I know I’m typing the right thing, but I’m not. Like how I had to go back in this line and change “owrng” to “wrong” just then. My fingers know it was typed correctly, but it wasn’t. The second instance is the worst. When I was writing blog posts for CrossFit New Haven, I’d have Barb read them before I posted, because often she’d spot a section and ask me “What does this sentence mean: ‘When you’re doing the Olympic lifts, you firetruck your elbows quickly?'” This was all before autocorrect, mind you, so I knew it was supposed to be a different ducking word.

The word retrieval issue is what drives me crazy the most frequently. I can tell you I’m thinking of the word for that round thing in your car that you put your hands on to steer the car and has an airbag, and I could tell you lots of other things about it and still not come up with the word “steering wheel.”

My memory is shot as well. Many of you know me as a reservoir of trivia, and a lot of that is still in there, assuming I can retrieve it when needed. But most things that I’m not immediately using just fade away into the background. “Use it or lose it” has become a way of life. Depending on how long it’s been since I’ve seen you, I might not recognize you. Or will recognize you but have no access to your name. I’ve almost certainly forgotten a lot of the other details of your life that I once knew.

So here I’ve been thinking I’m okay, even while knowing that an important part of me isn’t. My brain is malfunctioning in several bothersome ways. If it weren’t malfunctioning, maybe I’d be able to see that I’m not okay.

My big revelation today was brought on by watching a documentary that I cautiously give my heartfelt recommendation. I watched “It Started as a Joke” today and it was wonderful throughout. However, his wife had cancer. Watching two people who seemed so nice and happy and great having to deal with this just broke me. fourteen years of repression, gone.

Throughout my cancer time, I never let myself get down to crying about myself or my situation, stupid crying usually seemingly about other things. I knew that if I started crying, there wasn’t a place to stop. It worked during treatment, but it looks like I’ve been doing that for these past fourteen years as well. Since I no longer seem to have a more immediate expiration date, maybe now it’s okay to spend a little time feeling sorry for the old me. Shed a few tears for the bits and pieces of me that cancer took away from me. Maybe now I can sit here and say the words as I type them:

I’m not okay.