It’s been a while…

It’s been a while since I felt the need to post here, but I was just asked about this blog by a colleague, and thought it deserved some love.

I’m not almost four months out of treatment, and I’m doing well. My oncologist actually said he doesn’t want to see me for 6 months, so I’m probably healthier than I deserve to be.

I’ve started a bodybuilding program, Kris Gethin’s 12-week transformation. A few people have asked me if it had anything to do with wanting to get fit after cancer. Initially, I told them “no,” but I’ve realized something. It actually is related. It’s kind of my final “fuck you” to cancer, my way of saying “Not only did I beat your ugly ass, but you can’t stop me. I’m coming back, bigger, uglier, and stronger than ever.”

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Cutting myself some slack

I went back to the gym today for the 3rd day in a row. Feels good to be back, but I found myself hating today. Why? I had to drop back on weights quite a bit today in order to get the required reps in, and it frustrated me. I found myself lifting angry, which, while it can get you through, generally is less fun and is an easy way to hurt yourself.

I had to write this note on the bottom of my workout sheet for this week:

It’s been 6 weeks, during which you survived radiation treatment. There is no shame in lowering weights.

 

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Me, unplugged.

One of the last vestiges of chemotherapy left me today – my port.

When my oncologist initially suggested removing it, I actually hesitated a little. What if I’m not really done? What if I need more chemo? Will I be able to have another one put in? Do I want to go through that surgery again?

So I waited until after radiation was over. And after that, for some reason, I had a mind shift. All of a sudden, I wanted the port gone. I’ve never liked the little lump on my chest, and being able to feel the tube where it went over my collarbone really bugged me. And even months after putting it in, if you whacked it just right, it was painful.

So this morning they yanked it out. Up to the minute they put me on the table, I was impatient. I just hate waiting around, and it felt like I’d just been there, done it, and was waiting for it all to be over. And the concept that it takes nearly three hours of waiting for an operation that takes 15 minutes really started to drive me nuts.

But it’s gone and done. I think I’m going to have an electrical outlet tattooed over it after it heals.

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It’s all downhill from here…

So officially, as of yesterday, I’m out of treatment.

I don’t have another doctor’s appointment for a month.

And according to my oncologist, unless I start showing symptoms again, he’s not recommending PET scans, either. Apparently, the latest research shows that they’re unlikely to catch recurrence of the type of cancer I have.

So I guess, at this point, I can officially call myself a survivor.

 

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Thankful

I’ve read the last few posts on this blog and not liked what I’ve read. I’ve been bitching and moaning a good bit, and that’s not like me. I’m more of a “play the hand you’ve been dealt” kind of guy. So I’m gonna take a moment to be thankful on this day reserved for it, in no particular order.

  • I’m thankful for the people who have come out of the woodwork to support me through this. Some of them are my oldest friends, some people I barely know. I know I simply can’t name all of you, but thank you.
  • I’m thankful for motorcycling. There were some days that the only thing that got me through was a long motorcycle ride.
  • I’m especially thankful to Dr. Dubovsky and the gang at Atlanta Cancer Care. If there was a group that made going through cancer easy, it was them. I can’t say enough good things about the people there. If you’re listening, folks, you made the rough days good and the good days better.
  • I’m thankful for the maturity, humor, and simple matter-of-factness that my daughter, Annie, has shown throughout this time in my life. Kiddo, if you didn’t know it, your dad loves you and is very proud of you.
  • I can’t tell you how thankful I am that Suzanne is in my life. Suzanne has put up with more than any four people should, and she still stays here, right next to me, much to my everlasting surprise and wonder. I love you, babe. Thanks for hanging in there with me through thick and thin.
  • Most of all, I’m thankful that I’m alive today. Four months ago, it wasn’t a foregone conclusion that I’d be here today writing this. These days I wake up every morning thankful that, well, I’m waking up to face another day. It doesn’t really matter what those days bring anymore, I’m just glad to be here to deal with them.

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Visible radiation side effects

Most of the side effects of my radiation treatments are invisible, and can be hard to explain to people, like the taste impairment, where nothing tastes like it should. The inside of my mouth constantly tastes like I’ve been gargling with seawater. Nothing tastes like it should. Some things have no taste at all, and some things just taste bad. Some things start out tasting okay and get to tasting bad as I eat them.

The non-stop exhaustion isn’t as hard to explain, but unless you’ve experienced something like it, you still can’t get a complete sense of it. At first it was just hitting the wall in the mid- to late-afternoon. Now it’s nearly all-pervasive. I’m tired to the bone all the time.

The visible side effects are fewer. The right side of my neck is red, and I have a rash over there. But the most visible one is the hair loss. I’ve been off work a couple days, and haven’t shaved, which makes it that much more obvious.

That’s a helluva fade I’m sportin’ there, ain’t it? Supposedly that will never grow back. If that’s true, I’m really bummed, as that’s the end of my beard as I know it. The bottom part might be workable, but I think the moustache is screwed. And the moustache is actually the main reason I wear a beard, since I have no appreciable upper lip, and the distance from my nose to my upper lip is vast and needs something to break it up.

This part doesn’t bug me as much, but it’s kind of an odd pattern, ain’t it? It really shows where the radiation was applied.

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The battle within…

As I was laying on the table this morning getting nuked, I had a realization.

Cancer treatment is the battle between something that will most assuredly kill you if left to its own devices, and something that would likely kill you if it wasn’t carefully monitored. In the meantime the latter leaves you debilitated.

Not much of a choice, is it?

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A lack of information is the currency of hell

This story isn’t mine, it’s about a gentleman who I’ve come to know in the last 3 weeks. It is, however, illustrative of the difference between a good medical practice and a bad one.

This gentleman has the radiation appointment immediately before mine every day, and we’ve come to be friends through our chats in the waiting room.

Generally, this is how our morning goes. We both show up and chat until he’s called in to be irradiated. Five minutes later, I’m called. Somewhere between the dressing room and radiation treatment, we usually pass and say “see you tomorrow.” This morning started no differently, but as I was going to radiation, he was standing outside the lab talking to a doctor, and seemed pretty angry. Not ugly or shouting, but you could tell he was unhappy. And after listening to about three sentences of the conversation, I knew why.

All of us in radiation treatment look forward to nothing more than the end of it. We all count down how many treatments we have left, and we know when our last day of treatment is supposed to be.

But not in this gentleman’s case. Apparently, the doctors extended his treatment a few more days, but didn’t tell him until today, when they asked him when he wanted to come in the next Sunday, since they’re closed Thanksgiving.

Why do some of these places think that it’s okay that the patient is the last to know anything? It’s our health, and our lives they’re toying with, and for many of us this is life or death. We need the information to be able to deal with what we’re going through. We have a right to know. Is it that hard to understand we have lives outside of treatment?

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More fun with radiation side effects

Compared with radiation, chemo was a walk in the park.

Two new side effects joined the circus over the last couple days. I have a rash near my right collarbone, which the radiation oncologist office gave me some cream to put on, and the dreaded exhaustion has finally hit. About 2:00 or 3:00 in the afternoon every day, I hit the wall. I napped for 2 hours on Friday and Saturday, but I don’t really have that luxury today and probably not tomorrow either.

Four.more.treatments. I can make it through this week. I hear that the week after actually will be worse, but at least I won’t be adding to the problem.

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Another ring in the side effect circus

I started noticing another side effect of the radiation, and did a little research before I actually chalked this one up to radiation. My sense of taste has gone wacko.

I’ve been noticing something amiss with it the last few days, but yesterday it really started to kick in. When I’m not eating, my mouth tastes salty, like I gargled with seawater, and foods have to have pretty strong flavor for me to taste anything at all. I noticed it while having breakfast at McDonald’s yesterday morning that everything was completely flavorless. I probably could have gotten the same flavors by eating my napkin.

Noticed a similar effect with my lunch. The only thing I really tasted were the onions on my sandwich. Not the meat, not the cheese.

Had pizza for dinner, only thing I could really taste were the banana peppers. (By the way, I don’t normally eat like this. Yesterday was an exception to almost every dietary normalcy.) Had a Bridgeport Hop Czar Imperial IPA, the bitter came through pretty well, but it wasn’t as aggressive as I’d normally expect.

Did some quick online research last night, apparently taste changes and impairment are very common with radiation to the head and neck, sometimes with measurable impairment 5-7 years later. From what I am getting the majority of it goes away after 90-120 days, but in the meantime, everything tastes bizarre, if at all.

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