Wednesday, January 9, 2019

Day 3,039: Deep Breaths

I can’t take them anymore, most of the time. This has been building for years. I can’t do some of my best things anymore at all, like spinning. If I spin, I spend the next two hours completely breathless, wheezing, coughing. If I take a walk in the cold, I can't breathe all the way in. It's terrifying. My favorites are my enemies, now.

One thing I have learned in therapy is that I am a good gauge of many things—decidedly not including my own physical pain and suffering. I just adapt and move on, without seeing the change as a problem. It isn’t denial. It’s a broken adversity switch.

There’s a lot of backstory here, but I’m not going to tell it, not today. I will tell you some things that are true, as I promised when I last wrote here, six months ago. I’ll tell a true story. I’ll tell a story that conveys something more than nothing.

Here goes.

It isn’t the obvious thing to go to the doctor when you can’t breathe. Not when not being able to breathe means you might be dying, albeit slowly. No, really, this is true. If the reason you can’t breathe might be that your breast cancer has metastasized to your lungs, in which case your cancer would be incurable and deadly 100% of the time, making that appointment isn’t obvious. Why not?

Because it wouldn’t matter. Because it wouldn’t change anything. Because sometimes knowing something puts you in the final when you’d rather be stuck losing the playoffs for a while.

Because you, and you, and you too—you can all go get a chest x-ray, a CT scan, an MRI. I can’t. Of course, I can. But it’s different for me. For me, it’s to find out if I’m going to die or not. Imminently. Slowly, painfully, but at the same time too quickly and not horrendously enough to want it to happen just to get it over with, not at 43.

Sometimes, you wait. Because it’s your son’s birthday. Then your husband’s, then, somehow, yours. Then, it’s Halloween. Then, it’s Thanksgiving, then Christmas. Because of vacations, or things to look forward to—none of these are the times you want to learn there won’t be much more of this. It’s never the right time to learn you’re going to die.

So you wait. And then, you pick up the phone before you can stop yourself, just because you have a break in your work day, and call your primary care doctor—not your oncologist. Before you can stop her, the receptionist makes an appointment for you—for two hours from now. For today! And you can’t wait because you opened Pandora’s box. You go, you talk to the doctor, she is new to you and sympathetic and you almost feel sorry for her when you ask her if she knows about your cancer and she says, not quite awkwardly, “yes, yes I know.” You tell her, “well someone like me—I want to find out if other things help before I do the chest xray.” Your argument is understood, and rejected. Within another 30 minutes you are getting the scan.

This is not how you expected to spend your Tuesday.

But it’s done, and there’s nothing to do but wait. They should rename cancer “The Waiting.” You don’t even try to work. You eat sushi. You overhear young men talking about their muscles, their gym time, and you find yourself enraged at them, so insufferable and so obvious in their insufferability. You hear the word “pecs” and you turn all the way around and glare.

You tell a few people. They say the same things. “I can’t imagine.” “How do you do this? “How do you feel?”

You want to be honest, but it’s hard.

You don’t feel anything. It’s been years, years before cancer even, since you felt the things that other people feel.

You are anxious, but how different is it than the hypervigilance, the constant desire to escape, the tweaking you have felt for decades?

You aren’t in denial. You are actually in the opposite of that—deep within hyper awareness.

And you have an important decision to make.

How do you spend what might be the last hours that you have in your life before you learn that you’re going to die?

Well, I already told you. It was a Tuesday. There was sushi. And annoyance. There was me, telling my husband he had to make dinner, telling a friend I wouldn’t be good company, looking at my kids and thinking how young they are and how much I’d like to see them grow up.

I didn’t feel rage or sadness or grief. I don’t feel those things, not so well, not anymore.

There was the twinge of acknowledgment that tomorrow, now today, would be the five year anniversary of the last chemo. Five years post treatment is supposed to mean something. They call it a milestone.

Three years was one too, and it was after that that cancer came back. Statistics and odds are just that—no one ever said you had to be on the right side of either of them.

There’s this: there’s no reason this wouldn’t happen to you. There’s no reason this happens. This isn’t about reasons. If I had to give this blog a tagline it would be:

“Life isn’t about what you deserve.”

So, how do you do it? The only way you can. You make other people do things your way. You tell the doctor no, she cannot give the results via the online portal. You tell her to call you, no matter what. She touches your shoulder, something you would never do. She says “OK. I can imagine you want these results ASAP.”

That night, she calls and leaves you a voicemail. And an email. And she says “I didn’t want you to spend all night worrying. Your chest xray was normal.” You thank her and she writes “I can’t imagine.” You don’t tell her why she needed to call you, because she knows some of it but maybe not the rest. If they only call when it’s bad news, you know it’s bad the minute the phone rings. If bad news means imminent death, and you tell them to call you regardless, there are a few seconds there where the game isn’t over yet. You need those seconds. You deserve them, even if this isn’t about that.

She can imagine, and she doesn’t want to, and you don’t blame her.

While you’re waiting for the xray your husband does what he does and texts you random articles to distract you. You don’t read them. You tell him that. He then asks something you aren’t expecting. He says he can’t believe it’s going to be that news, Bourne. But what if it was, or if it wasn’t, what’s on your bucket list? Should we just be doing that stuff anyway, regardless? And you tell him the truth.

Your bucket list is not to die, not yet.

That’s a true story.

Bucket List
By Katy Jacob

a turtle caught near the lake house
that was someone else’s lake house all the time
except for a week each August in the early eighties
and kept in a bucket until Chicago
didn’t even survive the night,
drowned in its own vomit,
the Jimi Hendrix of turtles
before you even named it,
is the only thing you ever think of
when someone says “bucket list”
and they mean what would you do
if you could do everything differently
and of all the possibilities
you think only of the turtle climbing out
of the bucket in defiance
and living for a few days in the grass
or at least dying with a lot more dignity
you think if you’re being honest
the only thing on the list
is a cold-blooded escape
from a place that you
were never supposed to get out of alive
even if it housed you
with the best of all intentions

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