Monday, June 14, 2010

Holy food

I don't have the results of my PET yet; it hadn't been read by this afternoon. Nor do I know whether what I had was a metastasis or a new primary. My new oncologist is going to connect with the pathologist in Oakland from two years ago, compare results, and call me tomorrow. I'll also find out whether there are any appropriate clinical trials.

I like my new doctor. He seems really on it. I told him I didn't have a spleen, while he was examining me. He already knew I had spherocytosis. He'd clearly read my stuff. (He asked how anemic I'd been. "No clue. I was almost six.") And he got what I was saying when I asked him, "WHAT is my body doing?", even as the only answer he could give me was, "Melanoma is unpredictable."

He was very concerned that I get into dermatology care up there; I'd missed my appointment two weeks ago in Oakland while I was recovering from surgery. I won't have to call; he'll make the referral.

He didn't feel anything odd during the examination, and he thinks (from that and because I generally look healthy) that the PET will be clean. I told him that my last one was too. And I asked him, "What's your hunch? Do I have more of this that we can't see yet?" He said, probably yes.

The short of it is that I probably am growing more of this crap, we don't know if my immmune system will squash it (clearly it didn't here), interferon "wasn't very effective" (duh), and the best next step will be frequent observation and possibly a clinical trial. Chemotherapy doesn't really work on melanoma. IL-2 (immunotherapy, very effective for a very few people) is only used against advanced disease. So I'll go in every couple of months for examinations. I won't be made miserable like I was on interferon. I won't be hideously, artificially sick, unless and until I develop something that immunotherapy could fight.

He knows my oncologist in Oakland. Said he'd be shocked by my news. I've been wanting to connect with that doctor anyway, so I sent him a note when I got home.

I trust the care I'm getting. I don't trust my body. A kept saying afterward, "You're alive." I didn't even really hear her. I couldn't process it; couldn't believe it. I wasn't ready to hear that I'd been given my life back.

We stopped for mango lassis and garlic naan for the road, because we both were hungry. I called one of my teachers, because I had told her I would let her know my medical news ASAP and because I wanted to hear her voice.  Then we went to the 5:45 Eucharist at Trinity. We'd been planning to; we both knew we would need it.

The presider was one of my mentors. A and I were the only people in the transept when she arrived. She asked how I was, and we talked for a minute. She invited us to light the candles while she vested.

It was the feast of St. Basil, so we used Prayer D. I didn't know I needed it, but the words were food. (I'm a Prayer B junkie for this phrase: "... out of death, into life.") She read a paragraph during her sermon, and asked us to repeat what had struck us. I barely more than whispered, "Rising from the grave, destroyed death."

I'd never been to the Monday Eucharist, so I didn't know the rhythm. I had no idea we'd have anointing. She asked me to share the reason I was standing up for it. I said I'd found a tumor three weeks ago that had come back consistent with metastatic melanoma, had just come from the doctor, didn't know any test results yet but he seemed positive, and the best thing for me was a lot of observation.

She cut in with "and a lot of oil," and invited the others to lay hands on me. I don't even remember the words she prayed, other than "be with her every step of her process." (I'm sure she knew as well as I, the double meaning in that.) She took. her. time. I breathed it in, held by many hands, wrapped in the presence of love.

I had taken my sandals off during the sermon, because I had to feel the ground. I think I'll go barefoot in church from now on. The prayer and the taste and the oil... helped me feel my bones again. I was thinking at some point, the only thing I can do now is live in the moment. When you're eating holy food, eat it and rejoice. When you're giving holy food at the river, give it. When you're integrating, do that--but don't try to do it all the time. Life itself is prayer.

If this crash course in uncertainty teaches me anything, it has to teach me that. Bones and skin and breath are sacred. What we do with them is wondrous. I ask for prayer and am flooded with my communities' love. That is where God is.

I got incredibly freakishly lucky, medically--I found this and had it removed before it spread. The blessing is that I've been to the edge twice now. I know I'll go there again; there is no way of predicting how often my body will throw these. I'll never be allowed to forget. It's both harrowing, and something to be unspeakably grateful for.

Afterward, A and I were alone in the transept, also where the columbarium is. The cross on the wall is this huge metal Celtic thing with figures of Jesus and the gospel symbols. I'd seen it before, but never studied it up close. I had to touch it. Traced the figures, ran my fingers down it and back up, around the circle. Put my hands on somebody's niche. My own heart. And back to the cross again. My body was praying; my mind had no words.

Breathe.  Rise.  I am coming back to life.


Elizabeth Kaeton said...

Courage is seeing fear - tasting it, smelling it, breathing it - and walking through it anyway.

May you always find courage to keep walking.

You are in my prayers.

sharecropper said...

Prayers for you. Kathy Jensen's post on fb caught my eye. I will sit at my desk for the next two days (company coming after that) and totally focus on sending you love and strength.

eileen said...

Prayers continue for you K. You have done a wonderful piece of writing here, conveying your feelings and your sense of the holy. Excellent.

Kirstin said...

Thank you all. (And Sharecropper, thank you for telling me about Kathy's post. I didn't know.)

Mary Beth said...

Continued prayers.

Mimi said...

What a God given blessing to go to Eucharist!

Love and prayers.

David said...

Courage, dear...

Sarah in deepest, darkest Lomellina said...

I’m delighted about the hands holding you. All I have wanted to do since this started was to be able to give you a hug or hold your hand. When you feel the hands on you again, know mine is there in spirit.

You are unique you know. The only person I have ever met who can speak so this (rather rampant) atheist sees your faith as not only entirely and solely positive, but a wholly beautiful thing.

Hand heart love, if there were even a glimmer of doubt in my lack of faith, having read what you wrote I would have found myself walking inexorably to the nearest place of worship, any place of worship. It was that powerful.

You really do have a calling. I know why you are in this world, to help those who unknowingly seek faith, to find it.

You are a path lighter.

it's margaret said...

I came earlier today and read your post without being able to comment.

I read it again tonight with gratitude.

I am praying for you now --especially this evening.

God bless you in every way dear sister.

Alison said...

When I read these words today, in an essay on wabi sabi (japanese concept of the perfection of imperfection) I thought of you
"Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That's how the light gets in."

They're from a song by Leonard Cohen (you can hear the song here:

I think of you and hold the thoughts with lovingkindness, my best attempt at prayer, that you may be surrounded by love and caring, and that you may walk your path consciously.

Two Auntees said...

"Life itself is prayer." Kristen, no truer words have ever been spoken. Our lives are entwined with yours, our prayers are entwined with you. As Sarah said, when you feel the hands on yours and the hugs, know that we are with you living and praying love, comfort and hope. Breathe it in. It is there.

Jane R said...

A beautiful post -- I felt I was there with you. Remember we are with you, near and far away. Sending lots of love and prayers. Lots.