Wednesday, July 16, 2014

I finally got the hog skull clean and got another Cancer Buddy.

Our network reaches around the world. It is above the law, beyond the government, and untouchable by the church. No power in the 'Verse can stop us.

So I was talking (ie, emailing) to my newest Cancer Bud tonight, and I twigged hard on something she said to me: that her dread of chemo was "just me feeling sorry for myself." It kinda set me off.

Back when I was recovering from having my mouth resected, I posted something in which I vented about feeling sick, and tired, and not knowing what was going to happen, and being in pain. And a very well-meaning commenter pointed out that I should suck it up and deal, because after all, my tumor was minor and I was going to live.

Which was true. It was also about the wrongest thing, I've since learned, that you could say to anybody with cancer.

Instead, you should encourage them to feel like shit about their diagnosis, because their diagnosis is shit.

It doesn't matter how "easy" a course a person with cancer has, or how "minor" their tumor is: from the moment you're declared free of evidence of disease, that is the best you can hope for, ever. I will never be cured. I will always, I hope, be NED (no evidence of disease).

Every dentist's appointment, every visit with my surgeon, every MRI or CT or plain old doctor-poking-at-my-neck exam is fraught now. I used to enjoy getting my teeth cleaned. Now I wonder if there's something that I've missed in the week leading up to it, and wonder if there's something that *they* missed in the week after. Those feelings do go away, of course, but they ramp back up in the month or week or day before another appointment.

Even something as simple as biting my tongue in my sleep--and I'm a terrible tongue-chewer--makes me paranoid to the point of spending dozens of minutes in front of the mirror, yanking my own tongue back and forth and peering at it.

So, yeah. This fall will be four years. After five, I'm good until twenty, given the statistics, unless more people get my sort of cancer and the statistics change.

And I am still allowed to feel sorry for myself if I wish, because that's how you integrate something like this into your life.

As I told New Cancer Buddy, eventually some ridiculousness about your situation will make you see the humor, however dark, that's there. You'll stop your pity-party and get on with things. . .but that pity-party, that grieving for the way things were before you had to put in a prosthesis or before you lost your nipples or your thyroid, is important. It helps you reconcile the way things used to be with the way they'll be from here on out.

Being brave--or being expected to be brave--is a horrible burden to place on somebody who's going through this, no matter how minor or low-grade. Everybody needs the freedom to flip the fuck out, and people with cancer are often denied it--"brave" is seen as the only truly acceptable way to deal with the diagnosis.

Years ago, there was an article in the "Onion" headlined something like "Local Man Fails to Put Up Brave Fight In Face of Cancer Diagnosis." That's how ingrained the Brave Thing is.

So, fuck Brave. I may be deeply disappointing Sara Bareilles, but I say flip out like you need to flip out. There's always time later to pick up the pieces.