Monday, September 06, 2010

Unknowing, and the one true thing

I had a really good cry this morning, that I’d been needing for awhile without realizing it. A friend had touched a nerve, and I was really hurt by something that I knew was unthinking and unintentional. A helped me talk through it, and other things came slithering out underneath. We talked about how stressed we both have been by all of this. She said she knew something was brewing, because I haven’t been as available to her. I hadn’t been aware. It was good for us both to get everything out. “This isn’t about you, but AAAARGH!” “I know! I hate that too.”

(The friend in question understood, when I told her exactly what had hurt me.)

Cancer is really fucking hard. It’s hard on the person who has it, obviously. It’s hard on the closest people to them. It stresses all their relationships.

I have a body that feels well about 60% of the time. Sometimes more, sometimes less. Right now, you’d never guess that anything was wrong. People know the word “cancer,” and they see me when I’m well enough to be seen. It comes out of everybody’s mouth: “You look wonderful!” I know, and right then I actually am. I’m thinner but not frighteningly skinny, and I still have my hair. I haven’t seen you in weeks, and I’m glowing. Love will do that.

The problem is I can’t ever plan for anything. I find out at the end of each chemotherapy session, what the dates of the next cycle will be. I asked for my birthday off, and got lectured about it—then they gave it to me anyway. So I have a longer break in September. I can find out when I’m down there that my own calculations will be wrong, because I need an extra PET scan. I bounced back more quickly this time, which is good, but it makes it harder in a sense as well. “I’ll be back... here. So can I do X four days later? Want to, want to, want to....” and I’ll wake up that morning knowing whether I can.

I thought I could find a rhythm within this, space to actually live my life. I haven’t. The things I was involved in before, that I really want to pick up again, I know I would be welcomed and embraced back into. But there’s no way to put dates on a calendar. I have an uncommonly long recovery time this cycle, and my body has apparently adjusted well. So by now I tire easily, but feel just fine. I go back in two weeks. The next cycle, I think I’ll have two weeks off. And I can’t tell you right now, exactly which weeks those will be. I can guess, but if I’m wrong I’ll have to change whatever plans I make. So I live my life in impulsive moments, not with any consistency. I’m coming up on four cycles. Most people have about six. The most they’ve ever done is ten.

That’s the easy part, though. I’ve been through cancer treatment before. I’ve gotten used to a body with capricious limitations. What’s hard is being so dependent on people. Cancer, ironically, put me through the fire that taught me not to be emotionally dependent and afraid. Now, though I feel well in the moment, I can’t do anything to economically support myself. (I’m going on disability in December, after the required six months have kicked in.) And I have an incredibly loving, present community that stretches far beyond my currently local life. But I have to trust that there will be people in my support system who not only love me enough to interrupt their own lives, but who are able to go south with me for a week, to be there for me emotionally while my body’s being put through the wringer, on two or three weeks’ notice. (I’m not allowed to go alone, even if I felt capable of it.) I don’t do the asking; A does, because I hate putting that kind of emotional urgency on my relationships. I get to a really toxic place of testing my friends’ love. I’ve never acted on it. I recognize it and shut it down. But I hate even having that occur to me.

A makes the trips with me, when she can. She’s coming next time. She uses her vacation time to go with me. She could negotiate for unpaid time—but not only would that stress her coworkers, but she wouldn’t be as able to support a friend who can’t support herself. It’s hard for both of us, when that comes up in conversation. I truly understand why she can’t go all the time. And she’d rather be with me, than send someone else. But this is the way it needs to be.

That all came out this morning. Something else has surfaced, as the day has gone on. I have a PET scan next Sunday afternoon. This will tell us whether my body is responding to chemotherapy. Has the tumor growth slowed, or stopped? Are there measurable changes?

I’ll have the irony of being blessed at church for my upcoming birthday (yes, this year I get blessed twice) on the same day I have a scan to see whether the current treatment helps the likelihood that I’ll live. I hold death in one hand and life in the other. I dance between them.

I’ve lived in this mystery since June. It doesn’t get easier. I want to live. I want the treatments to work. I want them to stop. I want to be in a trial at UCD or somewhere that my friends can actually visit me, can hold my hands and pray with me, love me and then go home. I want my life back. I can’t even imagine life after cancer.

I would rather hear my doctor in Riverside say, “It’s working,” than, “It isn’t.” But it gets so emotionally complicated. And I know that my will does not control my body’s response.

A friend wrote me a really wonderful e-mail while I was in the hospital last time. She wrote that she sees me resurrected, and she told me what that means. It was full of strong, powerful images. I got it and I loved it and I want that to be. I know it’s in the mix of her prayers for me—and I know she was responding to things she already sees. Inside myself, I see them too.

There are two ways to see myself: resurrected, and not here anymore. These are the only options. If I live, this is who I will be. This is how I’ve used this disease. This is the grace of God in the illness; this is who the fire has made me. This is the holy ground I stand on. (You stand here too; you just may not know it yet.) But can I live confidently in that strength? Will I trust my safety, even in the deepest unknowing?

If I am to plant my feet here, and to bring the exiles I love into the circle of the truest love there is, those answers are yes.

If the treatment works, it will most likely arrest the tumors where they are. I will always feel this pressure in my chest. I will touch the tumors on my rib and hip, feel them and wonder if they’re growing. Remission doesn’t come with a clock. It could be months, or decades. There’s no way of predicting. I could never have trouble again. I could reach to scratch an itch, feel a bump, and know.

How do you live with a time bomb in your body? That’s the wrong question. How could I ever truly live, if I were allowed to forget that I could die?

I know that the only true safety is when there’s nothing between me and the God who loves and liberates all of us. That is true exactly now. I say I’ll never know I’m clean again. That used to scare hell out of me. In the next breath I now say, thank God. I don’t want to go back to sleep.

I don’t want to die of this. I want to live well with it. The threat will fade, or it will kill me. It won’t go completely away. I won’t have the luxury of “after.”


Jody said...

Thank you, Kirstin. Beautiful, deep post. I hope today that you have all the joy and love a body and mind can hold... and tomorrow and all of the next tomorrows. Love you, Jody

P.s. I think your dove will help to circle the world on Tuesday, September 21st, the International Day of Peace. I just pulled it out and it looks really good. If it happens I'll send you pictures.

Mimi said...

I agree you are an amazing writer. And prayers and virtual hugs. Soon, I pray, I will be able to give you them in person.

Linda said...

Thank you Kristin. For all of who you are, and all that you share with the rest of us. Your writing and your life touch me greatly and cause me to stop and be in eucharisto now - thanks giving for all that is, now.

Audi Mama said...

Hey sweetie!

I have just gotten back to internet after a summer of blissfully connection-free family-time. I'm catching up on your posts and just loving your words and your honesty and your strength!! I think of you often. I have a friend in chemo and I've been making her soup, and whenever I'm cooking for her, I send you some of that lovey-home-cooking-healing intentions. I hope you can taste it. xoxo