Sunday, November 14, 2010

Something *else* nobody tells you about having/having had cancer...

How hard it is to get back into a normal mindset.

I've been in crisis mode, reacting and planning to something horrible, since the first part of September. Now that I'm not in crisis mode any longer, I'm having a hard time functioning.

Work will help. So will getting used to the idea, gradually, that I no longer have cancer; that the worst thing I have left to do is to learn to live with the obturator and get the occasional follow-up scan. Oh, and grow my hair back out.

What an odd feeling this is, going from cursed to cured in a week. It didn't even happen in stages: it happened in one phone call, when Terri (Dr. Crane's PA) told me that not only were the margins clear, but that radiation wasn't indicated. I'm considered cured. And with that five minute phone conversation--and I didn't even have my mouth in, as the phone woke me up--I went from being a cancer patient to somebody who once was a cancer patient.

In a way, I feel like a cancer poseur. I think about Friend Lara and all the shit she has left to go through--it's the stuff I feared most: radiation and chemo. I think about asking for advice on the Oral Cancer Foundation forums, where people have it so much worse than I do.

I feel vaguely guilty for having gotten off so easily. I feel really guilty when I consider how sorry I feel for myself when it comes to things like my speech.

It's been so fucking random.

I never thought I would fear the word "cured". For all of September and most of October it was all I thought about. I meditated on the word, planned for what it would be like to be cured. I never imagined the thought of the word would make me paranoid again.

Oh, well. I guess the change in thought'll come with time.

Meanwhile, I'm going to do something crazy and paint my toenails. That's just the sort of thing that went by the wayside when I had cancer.


Ewa said...

OMG, this is so much as I am feeling. After getting off easy with my breast cancer I almost feel guilty that it went so fast, so easy... I am supposedly cancer free but this is not how I feel. Cancer is still with me every day since I've been cured. I wish I knew how to remove it from my mind.

Penny Mitchell said...

You are not a poseur. There are women at Race for the Cure events totally decked out in pink survivor gear and with pink ribbons all over the backs of their cars having been diagnosed with DCIS, and they are not poseurs, either. YOU HAD CANCER. Cancer is cancer, and suck is suck. Your situation is your situation, and it can't (and shouldn't) be compared to anyone else's.

Go paint your toes. What color?

birdergirl said...

I imagine these feelings are just part of the cancer roller coaster you have been riding. Soon the ride will come to an end and you will adjust to your new "normal". I imagine it will be a very long time before this will not be the first thing you think of upon awaking.

Do your tootsies look good with the polish??

Celeste said...

When you go through a medical crisis you get so used to your life being lived in between doctor appointments and tests and getting test results and waiting for whatever is the next step. Then, all of a sudden, you're done. You've done all you can do, or you've done all that is needed. It's a very weird feeling; you've learned how to live in an alternate way, and now you have to go back. It turned out to be hardest for me to quit the internet forums that had helped me at the time. I went through two different things which each took years to resolve, but for each there was a clear cut moment when I was Done.

A lot of regaining normality depends on how many people knew you were going through it. The rest has to do with getting used to the prosthetic and living with it.

I'm sorry you lost your hair to this, but I know you'll rock the look as you get it where you want it to be. I'm just so damn glad you get to be Done!!!!!

Jenn said...

It will never completely leave your mind, you went through something horrific and insanely fast. I don't think anyone that has a to rinse our their head and put in a obturator is a poser. Maybe you are more a chipmunk or squirrel now with that extra space in your had, but you will never be a poser. You got to go through all the tests, all the worry, and have a giant hole carved into your head.

Jenn Jilks said...

Paint those toes. Feel strong. You made it through a very tough time. Hold your head up high! You go, girl!

Unknown said...

You are definitely not a poseur. Your experience and mine experience are extremely different but it doesn't mean that your experience is any "less" than mine. As your friend Penny said, cancer is cancer. If there is a word to describe 10 levels above fantastic, then that's what the appropriate word is for you being cancer free.

Polly said...

I know this sounds random, but have you ever read "The Maltese Falcoln"? There's this lengthy aside in there about a guy who vanished after a falling steel girder almost killed him. Sam Spade was hired to find him, and it turned out the guy had moved to a nearby town, changed his name, and then basically just replicated his old life. And Spade observes that the guy first adjusted to a world in which steel girders almost kill you, and then he adjusted to a world in which that doesn't happen.

It's like that with these kinds of crises. You adjusted to being Someone Who Has Cancer, and now you have to adjust to being Someone Who Doesn't. Both are really big, really sudden changes, and it's going to take you a while to catch up.

messymimi said...

Remember how you wondered why you were the one with those middle of the night conversations with patients that you didn't have answers to? Well, you still may not have the answers, but you have more insight than ever into how they feel, what their reactions are and why.

It's all happening for a reason.

JacquiBee said...

It's called survivor guilt and anyone can have it. We here in shakey Christchurch all felt it,some cos they suffered no damage, others cos the damage they had was less than someone else's. It's the weirdest thing, you almost want to be in a bad way to feel better. What you are feeling is so normal it's not funny. One day at a time as the saying goes, I think work will help too, you'll be tired but it will transition you straight back to the old you if you know what I mean.
so glad your on the mend

terri c said...

Well, many of us would say you have not "got off easy" and I agree with JacquiBee that you are coping with a bit of survivor guilt. It *is* so random and that guilt is, I suppose, part of the human brain's attempt to make sense of things. Hope your toes are shiny!

Anonymous said...

Yeah, me again. The anonymous (read: too lazy to create and maintain an id) reader with the brain cancer history. I so know what you mean. I mean, I had brain cancer, and of all the others I have spoken to since then, I am the only one who has not had a recurrence. I still feel vaguely like it's not quite real. I had surgery that was close to pain-free (no pain sensors in that brain) & a spell of sleepiness & general slow-down. I had to do PT to get my jaw back open. I had a numb side of my head (forget what they say - mine kept getting less numb for several years & is almost indistiguishable from the other side by now). I had very, very short hair. I had a possibly much-shortened life expectancy. But I didn't have pain, I didn't have chemo or nausea or hair falling out (yeah, it was shaved for surgery, but that's different). No radiation. With this very scary diagnosis, not-so-hot prognosis & all that came with them, I have actually been physically healthier than ever. Go figure.

And I do sorta feel like a bit of a fraud. That feeling actually gets stronger as time passes and nothing more happens.

But everything else just gets better & better. And we can get used to the idea that we are not, as former cancer patients, facing quite what we'd been afraid we'd have to.