Sunday, May 11, 2008

Here goes

My PET scan is tomorrow afternoon. It will show any lymph involvement that the CT didn't catch. I’m scared out of my wits.

I keep clinging to the fact that my CT was clean. But that was two weeks ago—and they wouldn’t do both tests, if they didn’t need to. I’m not at all afraid of the procedure. If you hate needles, don’t get cancer. (I have a blood condition which meant I got stuck a lot, when I was little. That makes it easier to be tough about it, now.) I’m terrified of what they might find.

Even though I know that this is totally survivable. Isn’t that odd? Cancer does strange things to your mind. I think a part of it is knowing that my body will be different, irrevocably, after Thursday. I’m determined not to hide it—but I may not be able to, even if I’d choose.

I keep saying I want to remember this, to learn from it, to give myself to being changed by it. The truth is, I will never be able to forget. All I can do is choose how to live, with this as a part of me.

Living with cancer is not my choice. I am, and do, and will—even after this becomes part of my medical history. I want to be brave. I know I got off lightly. But there is nothing easy about it.

After the immediate fear subsides, after the cancer is cut off of (and out of) me, after I’ve recovered from the preventative treatment, I’ll have to carry health insurance, forever—and it will be more expensive and harder to get. If I don’t have jobs with benefits, I’m screwed. And there are way too many, like me.

My passion is ministry with the most marginalized. I know the church cares. I also know that I’m going to have to write grants forever. There is no money in this. I will “need” financial security—but like the people I’m serving, I will not have it.

You want to make an advocacy soup? That’s how. I’m articulate enough to speak up, and I will need to. If I can hear it as a calling, I can be almost okay with it.

I’ve been a poor hippie by choice, much of my adulthood. Now? I didn’t choose to land on the wrong side of our health care system. I got a diagnosis that branded me high-risk. I’m still young, strong, otherwise healthy. I am still myself. This was not my choice, any more than mental illness is someone else’s. It happened.

How am I coping right now? Rocking out to the same song over and over, on my iPod as I type this. Shivering—partly out of fear, and partly because it’s cold in my room right now. I told a friend I’d take a hot shower and call her, over an hour ago. I’ve been fielding e-mails, listening to music, writing, thinking, and letting myself feel, since.

Schoolwork? Not tonight. I feel like I’m full of caffeine. I’m on an airplane, cleared for takeoff, and the gears just engaged beneath me. There is no backing out of this.

It’s not a rush I’d wish for anyone.

I, and my friends, can ask all the right questions. I can know exactly what the doctors are doing, and why. I can also demand a port, rather than 20 separate IV starts. I can advocate for myself within this system. But the only real control I have over my own apparent biology, is who I am.

I ask my friends for prayer, because that’s the only way I can pray. I know God isn’t a Band-Aid. Miracle healings happen, but they’re rare. I don’t rely on God to break the laws of nature. Therefore, I don’t know what I’d even ask for. Courage? That’s my soul’s work, anyway. Strength? Develops with experience. Patience? Quietly, never.

I can ask for the grace to live this well, and by my actions I probably already have. I know what I mean. But the words still sound like surrender.

A teacher just reminded me in an e-mail, to breathe. My community is holding me in prayer and love. That is how I know God is here.


Anonymous said...


The period of time right before surgery is like being in limbo --and I read somewhere but cannot recall where, that limbo is both a dance and a state of mind. As a dance, it requires great strength and flexibility. As a state of mind, it requires great strength and flexibility. So, there you are!

It all becomes much easier post-surgery, because then you KNOW what you have to deal with. You are at the very hardest part right now.

As to the lymph routine --I get up in the morning, wash my face, pee, brush my teeth and "pump" my arm free of lymph. It just becomes routine. Part of morning prayer. A place of thanksgiving.

As to the health care --yeah. It sucks. Really sucks. Turn your energy to supporting your local free clinics and pushing legislation toward universal health CARE --not universal health insurance...

most of all --keep your shoes off. The ground upon which you are standing is indeed holy ground--a glimpse of the abyss which few are brave enough stand near as wide-eyed as you.

many blessings,
your sister --margaret

Anonymous said...


I became a crazed person in my last health crisis, and drove my priest wild with questions. I'm not very good at centering my prayer life or meditation. My brain just can't or I can't quiet down, but what I do, is go to the beach. It is a couple of hours of driving to get just below Dewey beach in Delaware, but in the off season there is hardly anyone there and the day I went in 2006 (just before Christmas and nothing was done for the holiday, don't you know)it was cool and breezy and not a cloud in the sky. I spent a great deal of time berating God for my lot in life, then crying and laughing at the same time, Well I shouted a little and probably cussed enough for a bunch of people, but at the end of the day, I had walked several miles and felt better. Not great, but better. I had to remember to breathe too.

Hang in there. Tomorrow will be over before you know it, and then you will move on to the next phase. Just keep moving forward.



Mother Laura said...

Holding you in prayer as you go through the scan this afternoon, Kirstin. You are amazing.

Jane R said...

Much peace to you, Kirstin, and prayers of course.

I have found walking helps to work off some of the anxiety, or to channel it, and you are fortunate to live in an area where one can take long walks without needing a car to get somewhere to walk.

Again, peace to you and again peace.

Caminante said...

Reading this right now, thinking that perhaps you are getting your scan right now. May our prayers cover you like your favourite blanket or quilt.

Padre Mickey said...

I'm praying for you, Kirsten.

Yankee_Fan_At_Fenway said...

Ok, I gotta ask - Which song? My prayers are with you - Sending some healing energy from Boston!
AKA Yankeefanatfenway

Anonymous said...

It is late here on the right coast, and I send you blessings for a restful night.

You're in my prayers Kristin



Kirstin said...

YF: "It's the End of the World As We Know It (And I Feel Fine)". Old R.E.M.

Everyone, thank you. Your presence helps more than you know.

Amazing? Just muddling through. Thank you, though.

Thank you for your prayers, coping tips, and your stories.

Much love.

johnieb said...

Kristen, my dear,

sorry I came to this so late; a CT-scan AND a pet-scan are, together, totally standard for this. You're covered, so make sure now, early.

You are going to be fine, my dear; tests and appointments are a drag, I spent my entire Seminary time (five years) with at least one appointment a week, and three hospitalizations, not counting the major surgery immediately upon graduation. Relics by now, but frightening indeed twenty six years ago.

What will you be, and do, twenty six years from now? I hope, a la Madeleine L'Engle's characters, to be a star, or nearly one.

Make that thirty six.