Tuesday, June 23, 2015

Cancery McCancersons. Don't like it? Click back.

I had the first of the five-year hurdles last week: I saw my dentist. Me and my surgical deficit, we went in to the same office and sat in the same chair, but with a different hygienist, one who didn't once have twins kicking me in the face while she worked on my teeth. I sat and looked up at the same goddamned pine trees that I saw when they said they thought I might have cancer, and I waited for a verdict.

Everything is fine, they said. My teeth and gums are really healthy. I need to floss more. There is no evidence of disease.

For anybody else, that would be a milestone, a real one. For me, it's kind of a milestone. It's a milestone that everybody else has created, not knowing that the sort of tumor I had shows up again, usually in a nastier form, after twenty years.

Those of you late to the game should know: five years ago, at forty, I had half my hard palate and all of my soft palate removed due to something called polymorphous adenocarcinoma. Mine was low-grade, leading to the initialism PLGA, and try searching *that* on Google. You'll end up knowing more about golf than you ever wanted to.

When I was diagnosed, the article on Wikipedia was a stub. You could've edited it to add what you knew to help others. There was one paragraph in one textbook about it.

ANYWAY. After a hellish year that you can read about by clicking on the 2010 and 2011 archives, I had a prosthetic that was better than my original mouth. I had no need for nightlights, since I had had enough rads to glow in the dark. I was well-versed in CTs and PETs and MRIs, with and without contrast, and with the recovery process that goes with having bone saws in your head.

In October, I will be officially five years out. The trouble is that five years means, simultaneously, nothing and everything.

In October, it'll be five years since I stood at my kitchen sink and looked out the back window and prayed and wished that I could spend more time gardening.

I haven't spent any more time gardening.

In October, it'll be five years since I called The Brother In Beer with the news that my lump was malignant. He spent the next couple of nights wondering what the hell he was doing so far away.

We're together now, and he's The Boyfiend, but I haven't been as present as I should've been.

In October, it'll be five years since Nikki and Lara got really sick, not just big-surgery-and-plastic-shit sick, and had to lose their hair and get irradiated. I never had to do any of that. They were solid as rocks, the both of them, when what I was going through was so much small potatoes.

The Boyfiend's father is celebrating his five-year anniversary too, celebrating freedom from a much nastier type of cancer that meant a G-tube and head-and-neck radiation and all the things that go along with that.

Here's the breakdown:

I didn't have a really nasty cancer.

The cancer I did have has a recurrance period way beyond what most people think about. Anything can happen in twenty years, and most things do.

Max, the dog who kept me company when I couldn't talk at all, is dead. Mongo is here now. The cat-boys were barely out of kittenhood then, and are now adult cats. One is huge and muscular, the other is sleek and flexible. They'll all be dead by the time I have a real clear checkup. Hell, the guy who did my surgery will have retired by then.

Things have moved on, except they haven't, really.

I realized today that I've internalized this bullshit anniversary. Mostly, I think, because twenty years is too much to think about. If I can make it five years, then maybe I can make it seven, or nine, and eventually forget about what happened, except that I'll still have that Thing I have to put in my mouth to talk. Maybe I can reconcile myself to another fifteen years of wondering if the tumor's come back.

If I think about it as a whole, as in "I have to fear every checkup for the next fifteen years," then I want to fling myself out a window.

I realized today that I've spent the last five years putting things off, vamping 'till ready, because I believe in this five-year mark that means nothing. And now I wonder if I'm going to keep putting shit off for another fifteen years. I hope not.

Wouldn't it be fucking hilarious if my CT or MR shows something growing on a lung? Or my intestines, or liver, or meninges? It would certainly give me something to do, but I'm not sure I'd be grateful.

What do you say when you have nothing to be afraid of, yet you're still afraid?

I never realized until now how much having most of the inside of my head exposed to air had affected me. I'm ashamed: it shouldn't be such a big fucking deal. Lara has gone out and run marathons, for God's sake, and I've just sat here paralyzed, navel-gazing.

Despite all of that, I'm still afraid. I have no reason to be, but I am.


Mama D said...

You're only human. It's the most natural thing in the world. De-lurking to send a virtual hug your way!

jimbo26 said...

You don't know me , but I read your blog and I'm sending one massive big air hug to you . Keep going girl , Jim . 😊

Wayne Conrad said...

It's from you that I learned--continue to learn--that cancer is not something you get cured from and move on. You've given me an understanding of cancer's life-long emotional impact that I didn't have before.

My understanding is not just recompense, but I guess it's something.

bobbie said...

I second jimbo26's great big hug ~

It's OK to be afraid;just don't let it run your life.

Kia kaha ~ Maori for 'stay strong'.

yrsis said...

Where did "Nothing to be afraid of" come from? You have everything to be afraid of -- you just have a deadline that's farther away. Don't downplay what you're facing.

I'm not trying to make you feel bad. I'm trying to say that what you're dealing with is real, and you're on an island that apparently no other cancer survivors inhabit, because you won't know if you're a survivor until you're getting Social Security. How the hell is anyone supposed to deal with that uncertainty that long?

Oh, and the first person who says "We all die eventually" gets a broken nose from me.

clairesmum said...

Hugs, big virtual air hugs to you.....life is a crazy journey, the path has all sorts of twists with horrible chasms and wonderful vistas...some companions find us...others we need to seek out, for their wisdom.....

Cindy said...

Can't imagine what living as a survivor is like. Easy for me to say, but live each day for what it is. Who knows what the future brings for any of us.

I admire you as a nurse (fellow one here) and how you have handled this entire situation. I too want to throttle Keith with you!

RehabNurse said...


Live life and enjoy it, one moment at a time.

Let cancer out, so hopefully, it will never return. If it does, you gird the loins and beat the cr*( out of it, if needed.

Enjoy the moment. It's yours. Don't let fear of cancer have it or steal your joy.

You have too many good things to miss.

I wish you peace!

bybike said...

Well, this may sound negative, but for me it isn't. I had a low-grade brain tumor 17 years ago, so I've had some experience with what you are going through, and yeah, it's tough sometimes. But a couple of things have helped. One is plain old time: after a while, you get used to it. You will not be feeling this level of anxiety for 15 years, so at least you can (try to) let go of that worry. The other? Well, this is where it may sound a little negative: you are far more likely to die of something entirely different, like getting hit by an out control car. Why is that so great? Because all of us face that every day, and it just doesn't cause much anxiety (unless you are actually hearing the squeal of out-of-control tires at that moment, and even that one we get over within a few minutes) because we pretty much know it's not going to happen. In other words, where you and I sit on the risk spectrum just isn't that different from where everyone else sits. We're probably going to be fine. Maybe our odds of living to be 100 aren't quite average, but they're probably not all that different from those of our healthy friends and neighbors.

You are an amazing, strong, passionate person, and this is probably one place where those great feelings don't serve you well, so maybe you can work on some rationalizations and habitual thoughts that can help you through the follow-up visits. About 3 years out from my tumor surgery, I asked a friend who had miraculously survived ovarian cancer (and 14 more years down the line, she is still fine), did she still think about it every day? She said, well, maybe she was, on some level, aware of it every day, but it was different. It eventually just became a part of her, a part of her history, that was not that different than other parts. We can get used to all sorts of weird stuff, including a scary medical history. Hang in there. I'll keep you in my thoughts.

cowango said...

Jo, I would say you have every reason to be afraid. Hell, who wouldn't? When our bodies fail us, and they will for all of us eventually, it brings us smack dab against our mortality and tears the curtain away from our perpetual illusion that we have infinite time for everything we ever want to do. That mobilizes some and paralyzed others. It's not a character flaw, it's fear, pure and simple. And it's a reasonable emotion under the circumstances. Hopefully this "nothing" five year milestone will galvanize you into motion to get on with whatever it is you really want to do. Big hugs.

Heather said...

Of course you're still afraid. You're sitting in the dentist chair one minute, and WHAM, the rug gets pulled out and you're on the floor trying to figure out what the f*%^ just happened. You don't just get over something like that. It indeed becomes a part of you. My fiancee (at the time, now hubby) was diagnosed with MALT lymphoma -stomach and lungs- about 6 years ago. Similar scenario. I little weight loss, crit too low to donate blood (he donated regularly). Follow up endo and then the big C sucker punch. Leaves you gutted (see what I did there?)
He's the Pollyanna optimist. I'm a nurse. I live in constant surveillance mode, counting respirations and watching for appetite changes.
All I can say is hang in. Recognize and enjoy the good stuff. Don't internalize the bad (Keith) stuff. Live well, love hard, be nice. It's all any of us can hope to do.
Sending big hugs

Barb said...

Oh gosh, it's so human to feel scared of what you don't have real control over (you know, beside the not smoking, right eating type of thing, etc.). I've been going thru this with hubs, he was first diagnosed in 1992 with NHL. Since then he/we have weathered 4 remissions, the last being a freaking spinal tumor that his onc swore he couldn't have, lol. But that feeling of being scared--yeah he has it, because his type of NHL can crop up any time, anywhere. It was holding him back from living at one point, until this year of all years he basically said screw it and is currently thru-hiking the Appalachian Trail. I don't have any answers for ya, wish I did, but if I had to say one thing it's to get out there and garden, etc. Every negative year is a step in the right direction. A big hug to you ;-).

CrowsCalling said...


Laura said...

Thank you for this. I was diagnosed with melanoma 7 months ago. It wasn't supposed to be cancer - it wasn't even a mole. I thought it was just a cyst, and the dermatologist agreed. It wasn't a cyst. I keep waiting for the day to come when thinking too hard about the fact that I have fucking cancer doesn't make me start crying without warning, but that hasn't happened yet. I still sometimes feel like I don't somehow deserve to feel like this. I had a single surgery, which left me with a giant, but manageable, scar. No chemo. No radiation. But melanoma's a dick. It can metastasize, just a few cells, and then lie in wait for years. The 5 year mark doesn't mean that much for me either. From what I can tell, if the cancer comes back, the longer the time frame the more deadly it is because after a while they stop monitoring me quite as closely, so it can spread more before it's found. The other reason melanoma is a dick is because you're either fine or you're not. If they cut it out before it has spread, you're probably fine. Otherwise, you're dead. There's one chemo drug, and it doesn't work very well. One website I read listed the first-line treatment for metastatic melanoma as clinical trials.

So thank you for this, because as much as this all sucks and I wish to God it hadn't happened to you or to me, at least I know I'm not alone in my feelings.