Saturday, December 14, 2013

I have cancer. And I'm angry.

The goal of this blog has always been to entertain. It's never really been about my life or my problems, though obviously it's hard to write about food and eating without the context of where, and why, and with whom. Over time, intentionally or not, that has created a portrait of who I am.

When I got my cancer diagnosis in January 2011, I figured, No big deal, I'll use the blog to keep people up to date, and maybe find some ways to talk about food from the perspective of a patient.

I used the same voice and tone as I always had: keeping it light even when writing about the dark days.

And everyone said, "Oh, you have such a great attitude. So positive. It's really inspiring."

Yeah, well, we're done with that now.

Because this stupid mass of chaotic cells in my face seems bent on ways to pull the rug out from under me at every opportunity.

And I'm angry.

I'm angry at everything this stupid disease has taken from me. It's been incremental enough that complaining has seemed almost petty.

Yeah, I can't lick my lips, but I have Chapstick. Sure, I have to feed myself through a straw, but I can still taste hot chocolate and coconut chicken and ginger ice cream. Yes, I've been sleeping upright in a chair for months and missing the warmth of The Boy in bed, but it's better than tossing and turning all night, keeping him awake while I deal with neck pain and shortness of breath.

But that feels like the gentle crawl up the roller coaster. And now we're about to hurtle down the other side.

You want to go an elegant Cape wedding? Ha, no - facelumps, enlarge!

You got tickets for a show? Bought them five months ago? Shame you're just too fatigued now, ain't it?

Oh, you're invited to a friend's house for a Christmas brunch? Naw, how about — boom! — we make a hole in your face instead?

The hole appeared Tuesday, terrifying me in the bathroom mirror at 5am. Thank goodness I was due to see my awesome nurse practitioner that morning. She took it in sympathetic stride.

Apparently recent chemo had liquefied some of the tumor (science!), which had then burst through my cheek. It was the tumor that sits inside my mouth, up against my teeth, and the damage happened in such a way that there's a small passage all the way through. So every time I drink something, a tiny bit dribbles down my neck. Which means eating/drinking are hard, the after-effects are gross, and attempts to keep the wound clean are challenging.

And on Friday I found out that tumor-related wounds don't always heal.

Think about your face. Take the first knuckle of your pinkie, and hold it against your left cheek just to the left of your mouth. Imagine there's a little hole, a shelf, a cave, full of white goop. Which will need to be swabbed, packed, bandaged. For the rest of your life.

Am I still being positive?

Let's keep going.

Because the wound goes into my mouth, it's even harder to suck anything through a straw. Suction requires pressure, and you can't maintain pressure when there's a hole in the system. It takes an hour to coerce a milkshake down my throat.

My other nurse says, "Just press your hand against the dressing where the hole is. That should create a seal."

Which feels like another of the Mutant Cells' way of kicking me; The Boy and I had just been talking about how we could hack a Christmas dinner that would work through a straw. It involved cooking a mini Christmas pudding and blending it up with custard. I'm pretty sure it would have worked.

You want any kind of nostalgic Christmas traditions? Ha ha ha!

This rant may seem to come out of nowhere, but it's been building for a few long months as little chunks of control, little fun pieces of life, are taken away. Going out with friends. Going to the movies, the mall, the grocery store. Getting a haircut. A manicure. A frappe.

These days, I don't want to leave the house. Talking is really hard. It's painful, and my words are mushed and foggy, which means I have to repeat half of what I say if I want to be understood. I avoid it whenever possible. I communicate with Diego through terse sentences and "Mmmm"s of varying emotion.

And don't say, "Oh, it can't be that bad. No one will notice. You're still beautiful."

We're way past that. Sorry, but we are.

How's my attitude now?

Don't worry: I have started meeting with a lovely social worker, who's helping me through this. So it's not desperate.

And what of The Boy, patient and long-suffering? Of course he's trying to take it all in stride, even though that now includes dealing with my sudden explosions of frustration - and with wound care. Yep, he's the one who gets up close and personal with this grossness, cleans it out, packs it with gauze and bandages me up.

I know none of this is my fault, but I still hate that my problems have become his problems. Richer or poorer, sickness and health, whatever. This is not what I want for him.

But hey, I guess you have to stay positive, right?

Screw that.

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Blogger Unknown said...

Thanks for posting this, Carolyn. If we can't see you in person, at least we can understand what's going on day to day.

6:05 PM  
Blogger Jules Burns said...

I read this and felt enraged. More kicking? Futile and unnecessarily over the top. Can't the cancer gently cause a quiet revolution somewhere expendable? A toe? Elbows are fairly redundant.

My thoughts then spin off... You have been there for me in bad times. You have enhanced the joyous times in my life too, in innumerable ways. As far as friends go, you are stellar. I am furious at being thousands of miles away when I should be riding that roller coaster with you. With regular pauses to put the kettle on and annoy you with bizarre eighties electronica played at full volume.

PS, I hope this does not sound like a sanctimonious platitude (i.e. It will) but The Boy lucked out when he met you. 'Up close and personal' is part of the deal. He couldn't do anything other. He can't take his eyes off you. It's mutual. Love you both. X

9:52 PM  
Blogger fringe benefit said...

Hooray for this! We who love you just want to know how you really feel, and I think I speak for everybody when I say we're furious right along with you. Lay off our Carolyn NOW!

12:20 AM  
Blogger Amy said...

Carolyn, Carolyn, I applaud your honesty and am so sorry this is happening to you and Diego. Sending you so much love.

9:46 AM  
Blogger Saul Wisnia said...

Not only is your anger totally justified, Carolyn, but you have reached if at a far later point that I could ever imagine. Even in your frustration your humor and resilience shines through. You are a shining diamond, and we're all thinking of you at 20 Overland St. Merry Christmas to you and Diego.

1:40 PM  
Blogger Jules Burns said...


Donne wrote:

All kings and all their favourites
All glory of honours, beauties, wits,
The sun itself which makes times as they pass
Is elder by a year now then as it was
When thou and I first one another saw
All things to their destruction draw
Only our love hath no decay
This no tomorrow hath no yesterday
Running it never runs from us away
But truly keeps his first, last, everlasting day.

7:20 PM  
Blogger Suzie Sims-Fletcher said...

oh char - not to make light of this, because I can't /you can't

but i have to tell you - the mmmm mmmmm talking with emotions made me laugh and think: and i bet she does a D@mn fine job of that!

Angry is good. Asking for help/needing help is hard. Having someone to do it is (a blessing - but I don't like that word - help me with thesaurusing that).

with love and admiration and other lemon pie sorts of things.


3:58 AM  

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