Friday, December 31, 2010

Intentionality

I recently discovered the owls & the angels, through a post she’d written that went viral about how to keep people in church. (My favorite suggestion was #19: “Make some part of the church building accessible for people to pray in 24/7. Put some blankets there too, in case someone has nowhere else to go for the night.” ) I read more of her blog, and then friended her on Facebook, because she seemed kindred to me in a way. Her work reminded me of parts of myself that I don’t engage with, for various reasons, anymore. Parts of me that I wanted back. She reminded me to be in love with nature. To value relationships, health (not just the absence of sickness) and time.

She’s going off of Facebook for several months. This post explains why: she wants to live in her real skin, not be conscious of how she looks to an online audience. She wants to write from her most honest self. It’s part of a larger media fast.

I am not fasting from Facebook. But her post got me thinking of the way I engage with social media, and the way I use my time. This blog is a ministry, and I want to be more faithful to it. I want to spend more time with the part of myself that writes and communicates in real depth.

I also need to stop clicking “refresh” on Facebook for hours on end. There’s a line from Kahlil Gibran’s The Prophet that goes something like this: “Don’t seek your friend with hours to kill. Seek him with hours to live.” I want to be truly in relationship with people, online as well as face-to-face. Not just use them as dopamine hits to keep from getting bored. All of us are worth infinitely more than that.

It’s the incarnational focus, in practice. Honoring now. Sitting quietly by myself in my own skin. Baking bread, when I’m baking bread. Really being with you, when I’m with you.

I don’t think it starts with structuring time. That by itself never works for me. It starts with realizing what I value, whom I love, where and how and who I want to be. I’m not fasting from social media. I will use it differently. I’m not going to blog daily. I will give more time to writing. I can’t take off and be in the mountains in an hour; I don’t encounter water every time I leave the house. But any time I want to, I can just go outside. I know I have tumors in my lungs; they will always be there, even if they don’t grow anymore. I can still ride a bicycle.

You know what I miss? Real, honest-to-God, paper letters. I’m not going to write them. But I can answer the stack of real e-mails from people who have written to me. And I can write to friends I haven’t connected with in awhile. It takes a lot more time and presence than clicking “like” on a Facebook status.

The other thing: I really don’t pray anymore. If someone asks for prayers for something, I’ll say that I will and then I send out a quick mental candle. I don’t make time in my daily life to be with God. And I really need to. Writing puts me in that touch. So does walking, and being in nature. I haven’t done the Daily Office in years. Wonder what would happen if I did?

It’s not really a New Year’s resolution; I never keep those. It’s an experiment in being fully alive.

Saturday, December 25, 2010

Incarnation

I haven’t taken time to write; I’ve been doing other things. I’ve missed this, though, and need to get back to it.

I’ve been thinking about incarnation. I can talk about resurrection until I turn blue; I was diagnosed the first time in Easter season 2008, and every time I’ve gotten good health news, or felt better, I’ve been full of energy. “Alive. Again. Yeah.” But I’m realizing, incarnation is really where I need to be.

Not just because today is Christmas, although I think Advent helped me see it. I wrestle with resurrection because I want my faith to be deeper than my body’s experience. But I can’t put it in a headlock and force it to be what it doesn’t know how to be yet. You get there by prayer and practice, not by being frustrated at yourself.

My body has been through so much hell. I have no assurance that I’m done. I need to be gentle with my body; not force it to understand what it doesn’t. I need to hold with reverence, where I have been. I need to honor where I am right now.

Incarnation. Word made flesh. Emmanuel, God is with us. The holy contained in an infant’s body... in mine? Love. A mother, a baby, a stable.

I’m exhausted, because A and I went to midnight Mass in Sacramento and got home at 2 this morning. I got up and drove to Pleasanton to hear a friend and mentor preach; ended up getting to serve with her. And I have images from both of these sermons in my head.

I wanted to sit quietly with Brian’s last line; it just felt wrong to get up and read the Creed on autopilot immediately after that. “There is no place in you where God is not being born.” No place. In your own dividing cells, and in the cells dividing too quickly, there is God. In your breath, in the very fact that you are alive, there is God. In your uterus, which hasn’t bled for five months because of what chemo did to you, there is God. In your hair, already grown in, there is God. In your hope. In your zest for life. In your strength; your knowledge that you will be well even if you die, there is God. In your love for humankind’s forgotten, God lives in you.

Carol’s image of baby God this morning, wriggling down into your heart. God had tried everything to be in relationship with us. Nothing worked. Finally, a baby. This is how God gets into us. These toes. This cry. That giggle. Here we are. This child needs us. We love, and we are opened. This is how God makes a home in us. We don’t need to clean house before God gets here; we don’t need to worry about our dusty corners. God will do that. We just love, and let ourselves be loved.

(She said it way more expressively; I’m exhausted, and pulling at shreds.)

I wove that around in the car on the way home, with the Velveteen Rabbit. Love makes real. You don’t have to look perfect; it’s fine if your fur is rubbed off. I know that in my own life; the fearfulness that used to be, that kept me from being honest with myself or anyone else. I know what happened when I was diagnosed, living in the seminary fishbowl. People responded to terror with kindness. I began to heal. Talking bred connection, trust, more healing.  Honesty created love.

I still get wound tightly around things that matter so much they scare me. I’m thinking of the process specifically. Am I good enough, together enough, eloquent enough for the people asking me these questions? Can I stand with the people I serve, in their scared places? Can I face the things that still hurt me? Can I answer these questions in the spirit that they’re asked, not being more unnerved by the all-eyes-on-me interview feel of it all?

I want that so much. I know that time is a question, with my body, with this illness. Can I speak truthfully and freely when it matters?

I listened to Carol preach this morning, and I kept wanting to take my shoes off. I was barefoot through most of last night’s liturgy. I find I do that when I’m looking to touch what’s real. Faith, life, God within me. Feeling through the soles of my feet helps me get there. I say it’s a holy ground thing, when people ask aren’t my bare feet cold in church. It is. And sometimes the truth is closer to, “God, where are you?”

I left my shoes on, because I’d been drafted to LEM and didn’t want to lose track of my shoes. (In her own church, she asked me to carry a chalice almost whenever she saw me.  I'd come up from the congregation and do it.  Today was a different set-up; I was vested and processing. I didn’t know anybody but her and the rector. I couldn’t quite be that casual.) I noticed how tight my laces felt, and then I noticed when. Whenever she said something that made me think of my own anxiety, there I was in tightly tied shoes. I knew where she was going; God meets all of that with love. But I still kept wanting to play with my shoelaces.

I was watching someone preach, who is close to me as a friend and in my formation. I was listening to her, and I was reflecting on our relationship. We talk about things that are hard for me, fairly routinely. Health. The process. Time. Family. She meets me where I am, with love. We do it over and over. This is not a one-time conversation. But it really does loosen the strings that bind me too tightly. (A does the same thing, and did it hugely when I needed her to, before I ever got sick. Having people—plural—who let me explore my edges of trust and safety and love is incredibly powerful. After awhile, the edges aren’t edges.)

She asked me last time I saw her, what would I be doing if I didn’t have to worry about ordination, finances, or anything else. I took it as a vocational question, and answered accordingly. That wasn’t what she meant. What did I really want to do, right now in this moment? If I didn’t have to think about what anything meant or mattered.

I think what I said was make stuff, bake bread, and hang out in Friendship Park listening to homeless people tell me stories. I’ve found knitting again, because I’m so tactile and the fibers feel soft and strong and good. I love making things that I or other people can wear. (I wish I liked sewing, but I’m awful at it and it gives me headaches.) I’m into baking bread again; I love getting my hands in something that’s alive, and that feeds us and that tastes good. And I’m totally committed to homeless ministry. That community knows me and trusts me; trusts my church partly because of me. They know I love them. But right now I want to take my work hat off; back up and just listen without thinking of resources and skills, get to know people.

I was thinking about all of this, while I was listening to her preach. And I think I know what the next step is. Incarnation is all about love. Love of self, love of community, noticing the sparks of life that give you joy and thanking God for them. Being alive and at home in your mind, body, and heart. Noticing your body when it feels well and strong and alive. Loving the people you love. Really, it’s about paying attention. About responding to the needs and loves and wants around you as you would respond to a baby in your arms. About really, profoundly being here.

Days off, at home, or up to my elbows in bread dough are good. But I’ve been spending too much time on my own. I need to reconnect the face-time relationships I had before I got sick, whether I jump back into projects or let those be for a time. I need to go back to the park. The 9:00 service at church. Thursday night dinners and lectio. Community Night sometimes, next semester. I need to find the people whom I love, or whom God wants me to love, however you want to put that. And I need to love them.

I’ll be gone most of January, but it’ll be all about reconnecting. I’ll be at the Ranch for the week leading up to Epiphany. Home for several days, then down south on a road trip to Riverside. I have seminary classmates who met each other there, who are having their relationship blessed. I’ll spend some time with them and other SoCal friends. A side trip to Arizona to see a high-school friend who visited me last summer. Then home, and back into the thick of things here.

It sounds so self-centered to write it, but I think the questions for right now are, “Where is your body? Where is your heart? Does what you’re doing right now give you life?”

Then find that life again, and live it.

Friday, November 26, 2010

Hair

Why haven’t I been writing? I’ve been busy, getting back into knitting. Re-learning how to make hats. The weather’s getting colder, and my hair’s been falling out. It wasn’t a question of if I would shave, but when I’d give in and do it.

My hair started thinning in August. I had my last chemo cycle more than a month ago. I’m not nauseous anymore; the main uncomfortable symptom now is hot flashes. (I haven’t had a period since July. Chemo kick-started me twice, then stopped it. So now I’ll get to go through menopause twice.) Now that I’m feeling better, and don’t need the sympathy I never got when I was in active treatment, felt like hell and looked great, my hair’s been literally washing off my head in the shower. I barely need to touch it, and it comes off all over my hands. I’ve been leaving it in tufts all over the house.

I shaved for the sake of the plumbing, as much as for my own sanity. I feel sort of silly, because I’m done with treatment unless and until the tumors start growing again. But especially in the past two weeks, I’ve been noticeably balder by the day. I finally gave in, gave up, and did something about it.

A friend in SoCal knitted me some hats; they arrived two days ago. I’m wearing one now.

I looked at myself in the mirror this afternoon, thought, “You can’t even pretend anymore,” got my shoes, keys and jacket, and went to the hair salon. It’s a ten-minute drive. I second-guessed myself the whole way there. Did I really want to do this? Yes. Was I ready now? What about one more day? Or after church on Sunday? I like having hair. I have a friend who likes to play with it. I don’t want her to stop. I like what’s left of the cut I had. I don’t want to have to hide my head. Everything grows, just do it. You’ll feel so much freer. You won’t have to think about your hair anymore.

The decision to do it was instant, and liberating. I was more emotional than I thought I’d be, on the way to the hair salon. I wanted this—but I was beginning to grieve it anyway.

I got there, shut myself down, got out of the car, and went inside. The stylist was one I’d had before; she knew I’d been in chemo. She asked if I wanted it cut shorter instead of all gone. I asked, “What could you do?” She described something to me. I thought, I’ll look like an old man anyway. And I told her to take it off.

My towel and pillowcase are in the wash right now, getting rid of the last vestiges of hair nests I’ve left everywhere.

Oddly? I feel a whole lot more feminine with ¼” hair, and this purple turban on my head, than I ever have. And I’m no less comfortable in my skin. I have to say, I really like it. I like the way this feeling fits me.

I don’t know what’s in front of me, on the cancer road. I could be healthy until something else kills me. The tumors could grow again in months, years, or decades. There could be advances in treatment before I need it again. I could lose my hair again, or I could lose my life. The iconic image of cancer is baldness. This is now an experience I’ve had. If people look at me quizzically, or react in fear to me, I can choose how to speak to them. I can go through the social experience with someone else in treatment, later down the line. I will have been here. I will know.

Yeah, I’ll trade my hair for that.



Before


After


Wearing a socially acceptable hat


Thursday, November 11, 2010

Breathing room

My head and heart aren’t wrapped around this yet, and neither are my words. I've been released from the Riverside regimen. My last PET scan (last Sunday; results came today) showed stable tumor activity.  I've been released to regular oncology care in Sacramento (with a doctor who treats me like I’m more than my cells!) and a follow-up scan in three months. I think it will be every three months for awhile, after that. Working up to annually, and if I get really lucky, never.

Shrinking tumors would have been ideal; stable is good enough. It means that biochemo has done what it can do. We don’t have to do anything unless and until they start growing again. They aren’t threatening me, just hanging out in my body. I have some pressure on the right side of my chest, but I’ve been feeling that since summer and can totally live with it. It’s a reminder, which is not a bad thing.

I was out hiking when the doctor in Riverside called me. (I’m at the Ranch until tomorrow.) I walked home, called A, two other friends and one of my clergy, made an appointment with my oncologist in Sac, put up a quick Facebook status, and went back outside. Wandered into the chapel, and out again. Just walking.

A is going to find out if, since I have Medi-Cal now, I could do the next level of treatment (if I need it) at a local, non-Kaiser hospital. The emotional acrobatics involved in flying me and one other person 400 miles from my home for treatment—and in finding people who are able, willing, and free of commitments enough to do this—are exhausting for both of us. I want my community to be able to visit me if/when I’m hospitalized, talk with me, sing to me, pray with me, love on me, and be able to go home.

[Note: Lots of people have volunteered to come from very far distances. Mostly through this blog, and Facebook. I was so overwhelmed when I got your responses, that I don’t think I ever answered you. Sincerely, deeply, thank you. (And thank you L for the air miles!)  Please keep me in your prayers. I may need the same kind of care I asked for, later.]

I've been given my life back in three-month increments, and I don't know how I feel about it. "Released" is the closest word.  I can do whatever I want to now. And I know I need to drink it all in. I’m going to take at least a week just to be with this, and then start sticking my toes back into ministry and life.

Health can turn on something smaller than a dime. This shadow will be sitting on my shoulder for awhile. I know it could turn into a monster and bite me at any time.

But for now, and as long as it lasts—I feel well, and I am alive.  Resurrection.  Again.

Monday, November 01, 2010

Cancer update--prayer and physical support request

Dear all,

Happy All Saints’ Day! It’s November, and I feel physically fine.

I have my next PET scan next Sunday afternoon, November 7. Sometime that week, I’ll find out what the results are, and what the next step will be. Here’s the breakdown, as my doctor in Riverside last explained it:

• If the tumors are stable, we stop treatment because it’s done what it can do.
• If they’re shrinking, biochemo’s working and we give me more sessions of it.
• If they’re growing, we move me up to IL-2. Likely shorter sessions, but the same frequency.

My next appointment south is November 15. I’ll either be in treatment that week, or we can do the consultation by phone and I won’t have to go there. If I go, I’ll be home on the 21st.

I’m sick for two weeks every month. When that wears off, I feel as well as anyone. I eat less, but I can walk and breathe. I feel like myself; my core energy is back. Which makes showing up at church and getting as much love and attention as I do feel both very wonderful and very weird. I love all the hugs I get. But when I’m well enough to be there, I can’t wait to get my life back and I feel like I almost could. How am I? Up and around, by God. Alive.

Honestly, when you don’t see me is when I most need you. If you think of it, e-mail and say hi. Because I always do stop throwing up; I always do get up and out of the house about a week after I get home. But when I’m sick and exhausted and nauseous—again—I don’t feel like I’m ever going to have control of my own life, or time.

I’ve been through five chemo sessions. I know I can endure it. I know how good resurrection feels. And there’s no question that being alive is worth much more than this. But everything it means to your day-to-day life when you’re being treated for cancer... you have to have been here, or be close to someone who has, to really understand. It’s like climbing the same mountain over and over, and each time the mountain is steeper.

I want my own time back. I was told two sessions ago that I’d be done after my most recent one. Then my doctor said no, it depends on your next scan, not the last one. I honestly don’t know what he’s going to say next. He’s been doing this for ten years; they know their protocols. I don’t know what’s up with this, but I do know it keeps happening. I get that my life is on hold while I’m fighting cancer. But they forget that they’re dealing with actual people, with friends and families and communities, and logistics they need to be able to count on to plan for. The rug under me keeps shifting. I feel like I don’t control anything. It gets really frustrating.

If you’ve gotten this far: We need more people to come to Riverside with me. I hate to be this blunt—I loathe the position it puts me in, even to ask—but my life depends on it. They won’t admit me if I don’t have a companion. My roommate Andee has exhausted her vacation time. I need someone to fly down and back with me, and be in the hospital with me while I’m there and awake. I need emotional and physical support. And even if I didn’t, they wouldn’t treat me if I went on my own. You are helping save a life, if you go.

Kaiser pays for lodging and travel expenses from Northern California. (If you’re not in Northern California, but would otherwise be available, don’t rule yourself out. A friend who has lots of frequent flier miles has put them at my disposal.)

We have November covered, but a back-up is never a bad thing, and we need more people in the traveling circle. If you can do this, anywhere between two weeks from now and possibly late spring, let me know in the comments (or e-mail me through my profile) and I'll give Andee your contact info. She can tell you what it’s like to accompany me; she’s come with me three of the five times I’ve gone. She can tell you what it involves, and what I’m asking of you. I can’t really, because I’m drugged and loopy the whole time. I remember very little, after a session is over. She also coordinates all of the travel arrangements. I need to stay out of coordinating who goes with me; it triggers too much fear and anxiety for me. My inner kid has enough to contend with, and that’s what I need to learn to take care of.

If you’re part of a church, prayer chain, or organization of other people who know me, please publicize this request. I need people to accompany me; this may go on for months, or the cancer may at some point soon become stable enough for me to stop treatment until if and when it resumes growing. If it does, at that point, I would again need companions for treatment. Not having to worry about finding someone to come with me each time would make life easier on me, and on those closest to me.

If you can come with me, come with me. If you can’t, pray and let me know that you’re praying. Thank you.

Love to all.

Kirstin

Friday, October 29, 2010

Why I'm not writing

I keep trying, and giving up. I’ve been exorcising demons for three days. I’m nowhere near done.

The background story—okay, both the old one and what happened two weeks ago—need telling. I can’t tell them yet. No one’s forbidding me; I just can’t get the words together.

Came home from a conversation with a friend. She was (and is) helping me confront this stuff. And I feel like I've been scraped by barnacles. Except it doesn't hurt the same way... or maybe it's more like having tons of tiny fish nibble me. It feels raw, but okay. I don't know. I've never been where I am right now.

My head is so full.

She told me a story that’s somewhere in the Narnia series (I don’t know which book; I read them over Christmas break five years ago). A boy gets too drawn in by some kind of treasure, and starts turning into a dragon. He asks Aslan to help him. Aslan takes a claw and starts peeling off the dragon skin. The boy says ouch, stop it, that hurts. Aslan answers, I know. It just does. I only know one way to do this.

I think I get it. I'm not used to feeling both scraped and safe. I need to put the words down, and feel it for awhile.

Wednesday, October 20, 2010

Home

Next steps, as far as I understand them:

I have a PET scan November 7. (Yes, all of mine have been on Sundays.) If the scan basically matches the last one, chemo’s done all it can do and we stop. I'll be transferred back to my oncologist in Sac for monitoring.  If the tumors are smaller, we keep at the biochemo. If the tumors are progressing, we switch me to high-dose IL-2. That carries a risk of neurological damage; I really don’t want to go there. But it also can, if you're cosmically lucky, knock the disease out of your body forever.

It’s amazing what you can get used to. I freaked out in the hospital my first round, because I couldn’t cope with the idea of having a chest wall full of time bombs. Now? As long as they’re not growing, they’re not threatening me. I know all I need to know about living in the moment.

Today is for resting and rehydrating. Thank God for good nausea drugs.

Wednesday, October 13, 2010

Shock

A and I are in the hotel in Riverside. We’ll take me to Kaiser in the afternoon. (Should I say “tomorrow” when it’s 3 a.m. now?)

We landed, stopped at Trader Joe’s for food for the week (more for A than for me; I don’t eat much when I’m on chemo), and came here. I called our friend Diane to ask when she wanted us for dinner; she and her friend Rose always host us on the first evening. I got her voicemail, and she called right back.

Her very dear friend had died suddenly of a heart attack that morning. I’d met Mark; he had also brought me food in the hospital. He was a big, loving, generous, hilarious, good-hearted theater geek. (He’d just started playing Daddy Warbucks in a local production of Annie. He’d wanted the role forever.) He jumped on the hospitality bandwagon, feeding a sick stranger (me) because of course he would. He was just a good person. He was strikingly vivacious and alive. To have met him, was to love him.

If cancer kills me, I’ll have had warning. I have time. Mark didn’t.

I wrote a friend and told her, because I tell her too much of everything not to and because she wants to share my experience in cancerland as much as she can. She wrote back that of course she’d pray for Mark and his family, and for us—and that she’d just gotten asked to do a funeral for a 22-year-old bicyclist who’d been crushed underneath a bus in the city.

What words begin to respond to that? I wrestle with life and death daily. I’ve gotten to a place where I know what a gift it is to go there, and I rejoice in being able to give thanks for life. He was a kid, just starting out. He may not have even known what hit him.

I haven’t processed this, and won’t for awhile. I am so thankful for the gift of being able to be conscious of time. I’ll miss Mark’s presence in my life and on this earth. People I love, really loved him.

Pray with the family of Mark Allen-Everett: his husband Jeff; their kids and grandkids. Our friends Rose and Diane; the community of St. George's Episcopal Church, Riverside; and a whole lot of theater people.

Tuesday, October 12, 2010

Figured out why I don't want a tattoo

Yes, I need to do something to mark this illness. I need to sanctify it. I need that almost as much as I need to breathe.

But ink is too easy. I would get a solidarity symbol, if there were one. But just for me? I need to do something intentional with my being. Not just my skin.

If it’s about how to live now, then that’s what you do. Much deeper than anything I’d draw on myself. Walking around with an image on my skin would be redundant.

I have a storytelling tool; it’s the bracelet I wrote about before. I wear it when I’m doing what I’m called to, when I’m in difficult situations, when I want to talk about transformation. (If you haven’t seen it, it’s because it’s big on me—and because I don’t need tools when I’m talking with you.) The circle of saints will always matter to me. I will always be mindful of the giver, and the reason. I always know where it is. It’s often with me. It isn’t always on me.

There’s no fixed image that I want on me forever. Interpretations change. Stories change with them. I lived through this; I’m living through it now, I will live through it. It’s process. Not snapshot.

I’d rather you be able to ask me anything you want. Not always about the whatever-it-is that’s winding around my arm.

I loved that my clergy friends did this to me, in the comments to this post about what to do if I don't get a tattoo:

+ You are sealed by the Holy Spirit in baptism, and marked as Christ’s own forever. +

They got it more deeply than I did. THAT is what this is about. How, there are thousands of ways. Living into this is the intention.

For me it’s immediately about focus. My friend gave me a key yesterday; you start with some overarching, huge goal like living into your baptism, and you see what little things you do that fit into the circle.

Right now it’s about staying present to life, and to God. I’m going to be literally drugged out of my mind for the next week. But after that, and for the rest of time, I can live with this and through it and in it.

Knowing that, is absolutely liberating.

Monday, October 11, 2010

Epiphany

I’m really posting this as a bookmark for later; to remember that I’ve been here and to walk with it more. I’m too tired to do any actual processing right now. And we’re flying south for what is hopefully my last chemo cycle, tomorrow.  My brain will be absent for the next week.

I stopped to visit a friend, on the way home from the Ranch. We did what we do; talked about everything. I don’t remember what she said that provoked this, and she won’t either because she was jetlagged and could barely keep her eyes open by then. But I said to her, “It’s so much better over here.”

After healing of brokenness; after cancer which didn't break, but healed me. It’s better being through all of that, being truly and fully alive. Not being scared. I am so fucking long-since done with being broken. I love myself now.

I meant it. I've known for most of this journey that I wouldn't take it back. My walk with cancer made me who I am. But until this afternoon, I wasn't through it enough to say it's better on this side. I always knew I would get to this point—but I hadn't realized I was this far already. I made the leap while we were talking. She was there to say that to.

That's what resurrection is.

Saturday, October 09, 2010

What do you do, if you don’t mark your body?

I don’t want a tattoo. At least, I don’t think I do. But I’ve been thinking about the idea for awhile.

In the friends-I-never-get-to-see category, there’s someone here this weekend whose tattoo I’d only seen on Facebook. I asked to see it in real life. His wife jumped on it: “With what you’ve been through, you should totally get one.”

Wow. I wonder why that’s the go-to celebration? It absolutely is. When I had my cancer surgery two years ago, I thought of getting a cartilage piercing on my ear near the surgery site. I didn’t, because the scars are sacred enough. And I didn’t want to have to take metal jewelry out of sensitive places, for future scans.

K said, “Get a tattoo.” What she really meant was, “Hallow your body.” I get the connection; really I do. I’ve thought along those lines myself. But I have enough exposure to needles right now. And there isn’t a design I really want.

I called A this morning and we chatted about it. She doesn’t like the idea. But she said, “If there were a universal symbol for cancer survivor...” She nailed it. I’d mark my body in solidarity, in a New York second. I’d probably draw it on myself in Sharpie, and wear it around right now. But there isn’t one.

There’s the black ribbon for melanoma awareness, but I have no connection with that symbol at all. I’ve been thinking. If you have breast cancer, you can choose to be obvious or not afterwards, depending on how radical your surgery was and what you want to do. My scars are mostly where nobody will see. And for many of us, after the hair grows back (I’ve been leaving mine everywhere I go for two months, but it only looks thin even to me when it’s wet), there are no obvious physical signs.

What we have is community around the newly diagnosed. We have our stories. Two and a half years ago, shellshocked and disbelieving, I hung up the phone after my doctor called me. I turned to my community—seminarians, teachers and blog readers—and announced how terrified and helpless I felt. People were there for me in whatever ways they could be. And then I ran into a classmate in the parking lot. She said to me, “I had breast cancer eleven years ago.”

It was this:
“Oh, shit.”
“Been there. Let’s talk.”

I tell my own story all the time. Not because I either need help or am giving it, but because I’m living it right now. My friends imagine what I’m going through, and they care, so I tell them. I actually like it when people ask me questions. I get to talk about it. That also helps me process.

I can answer deeply, or not:
“I haven’t seen you in ages. I don’t write, but I read everything. How are you?”
“Fine right now. Treatment’s working. I get to be happy being alive.”

I don’t need mentoring through this, anymore. And I’m in the middle of it, so I can say to someone (or a group, like over my birthday weekend), “I know what this is like, and here’s what helps me through it.” I’m not yet cleanly on the other side.

If I live into normalcy long enough—by that I mean get up and go about my day, don’t throw up and don’t think about cancer—I will be like D when she met me that day in the parking lot. “You’re new. I know you’re scared. Let’s take a walk.” Or like Margaret, who met me online then and who still walks with me from the opposite coast. She said she doesn’t self-identify as a survivor very often anymore. But obviously she does, when people (like me) need her to. I’m at terms with what I’ve been through. I know what could be ahead of me—either health for a year or two or ten, or getting to be old. I’m more emotionally ready to be hit again with disease. I can do that moment in the doctor’s office. Long life is the great unknown to me.

Let me qualify what I said. I don’t need mentoring through crisis. I think I do, for finding my way back into life. But it’s not hard to find people. That’s just what happens. That’s what this community does. I tell my story; someone meets me with theirs.

If I live long enough, I’ll get to be one of them. And I think I’m figuring this out. If there were a physical, obvious sign that I could wear forever, I would do it. I want to be there for people when they’re looking for someone like me. But none of us ever do that. What D did in the parking lot was look perfectly normal, while she showed me her scrapbook from Mars.

Of course she came back different. But that was clear in the sacredness of what she did for me. Not in the shape of her chest. I’d have never known, except she told me.

If there were something like the pink triangle for cancer survivors, I’d get the ink. There isn’t. There’s no instant obviousness. We come out in relationship. We come out in story. It’s the way you wear it, on the inside.

I’m not done with this yet, but I’ve typed long enough. This is giving me a key, something to chew on for however long I get to. It’s another way of phrasing the question, “Who will I be now?”

I have questions along a side trail, about how to be in relationship with my post-cancer body itself—but I need to walk with them longer before I can get to the first beginning of that.

Thursday, October 07, 2010

Mystified

I’m socially puzzled. But in a good way.

I don’t know how to make the point without telling stories. I don’t know how to tell those stories, without people seeing themselves in them. More people than I realize, read my blog. This isn’t about any individuals. It’s about the phenomenon.

Here’s what’s sparking this:

I’m at the Ranch, hosting a group of whom I know some members well; some in the barest sense of slightly, and there are a few that I’d never met. One whom I’d met once—last winter, at a large group gathering—was really excited to see me. I mentioned that I’d never been where she lives. It’s famously gorgeous. She offered to put me up there, take me hiking. I said yes and thank you. She said something about everyone wanting to make sure that I’m okay.

She lives hours from me. We’re not part of each other’s virtual or face communities—we’re Facebook friends, but we never interact there. Literally, the only actual connection we’d ever had was eight months ago. I’m sure I was friendly then; I was hosting. She clearly is. But we didn’t follow up, other than probably me tagging probably her on Facebook. (I have a ridiculous number of virtual friends.)

It happens all the time. I have all these relationships that I don’t even know I have. People care about me, pray for me, love me from a distance. We often become actual friends, when one of us finally says something. What’s mystifying, is how little it takes to create it.

One of the people closest to me now, responded to a one-line e-mail with a love-beam that I could take a bath in. I realized I needed to tell her that there were no words for what seeing her had done for me.  She felt the same.  We’d been in each other’s peripheral vision for years; the relationship took off from us actually saying “thank you” and “I love you.”

Someone whose existence is one of my touchstones, wrote back and never forgot me after I messaged her last winter on Facebook. When I wrote her again after I was diagnosed in June, I was still in her awareness. She goes out of her way now to show me that I matter to her. She understands cancer; she caught my eye because we'd both had it.  I thought she was brave; the wild thing is that I told her.  And she responded.  (A picture of her wearing a headscarf, baptizing a baby, is a prayer icon for me.)

I just went for a walk, to try to figure it out. I only got halfway there. I thought that I was confused about the power I have. I apparently really make an impression on people. But no, it isn’t that. Whatever I do has an effect that I’m happy with. I feel loved just for being.  I don't need to work on that.

What’s mystifying isn’t the huge number of people who carry me and only by chance (if ever) let me know it. It’s that I do the exact same thing to them.

How is it possible, to love so many people and never say so? I don’t know. But I do it too. I send out prayer calls all the time, and I just trust that the people who respond to me mean it, and those who don’t, love me also. I wouldn’t write to them if we didn't have a history of caring. I paste my updates here, because I know how many people read this, and you look because I mean something to you.  But I’ve gotten the same kind of mass e-mails from others, and not answered them. Before and after I learned what my community's visibility means to me.

There’s part of an answer in this: I’ve made a huge impression on one of my diocesan higher-ups, through the illness in particular. And she on me, because she’s a force of nature. I told her what I appreciate in her, in an e-mail this morning asking a vocational question. I think I was only free enough to say so, because I’ve been so sick. Really, why not? How often do any of us get to hear, “You rock because of X!” Some of the walls I was raised with, or put up to survive middle school and had never taken down, have dropped.

Is it an introvert thing? Nah, because I’m not so strongly over there anymore. My I and E are equal when I take the formal Meyers-Briggs; I need both quiet and community time.

I think it’s just oblivion. Not having enough attention—too busy looking or being elsewhere—to respond. I wonder if being here will help me make a lasting change in my own behavior. Or if I’ll forget, as I get well, if cancer fades into memory.

I don’t know. My community has meant so much. I really want to be part of it, myself. And the only way to do that is out loud. God hears silent prayer; I don’t, unless you tell me. I know I’m held up by so many hands, seen and unseen—but the ones I can hold are those who make themselves visible.

I remember people from church asking what they could do for me. I think I happened to be feeling particularly alone. I told them, “Tell me when you’re thinking about me.”

That’s still my best answer. But will I tell you, when I’m thinking of you?

Tuesday, October 05, 2010

Because the people I care about are more than my address book...

Dear all,

I'm at the Ranch right now, doing what I do before I go south. It's gorgeous; I love fall up here. I won't miss the reason for doing this; but the ritual itself, walking and writing and being... yeah.

A and I fly to Riverside next Tuesday, the 12th. I have my consultation on the 13th and get admitted. Treatment starts the day after. We'll be home the 19th.

It's not the emotional big deal that it was, especially since I know that it's working. I can do damn near anything if it means that I live. Even though I ended up in the ICU the last two times, when my blood pressure crashed; there are meds they give you for it only on that floor. I liked it there; it's quiet, and the nurses are really good. They didn't try to make me walk my bp up at 3 a.m. And each time, the drugs for the side effects get better. It really isn't awful.

The bigger question is how to live, given hope in the moment and total uncertainty beyond it. I'll be working with that for awhile. But, I get to. Pray with me, in that space.

SoCal people: Do what you do best. Visit me. Bring me communion. Bring me yourselves. I'll come down and see you, when I'm not tethered to anything and can actually remember conversations.

"Death of death, and hell's destruction..."

Love to all.

Kirstin

Monday, October 04, 2010

Thinking about resurrection

I meant to go to church yesterday, but threw up from lingering chemo-nausea so I stayed home. I ended up spending the entire day reading my blog. I didn’t mean to, but there I was. It helps me to go to some of those places sometimes—not to live there, but to visit. And I hadn’t read everything straight back to diagnosis in a long time.

I found so many references to resurrection. Including this one, from that first spring:

True resurrection is total: body, soul, mind, speech, will, intention. You wake up. You take a deep, long, healing breath. You unbind the cloths from around your body. You stretch your muscles, shake your bones. Scarred, but no longer bleeding, you walk into the light.

I was diagnosed during Easter season, and was very aware of it. I knew what I was talking about; the context was building a life, living in a way that I’d choose. But like all the rest of them, this reference is physical.

I may have just last week beaten cancer again. Or I may not have. Chances are it isn’t final, but yes of course I hope. And I’ve been thinking. When I was diagnosed the first time, I knew within a week that I would survive. My year with interferon was epic, but I knew I’d get through it, and I did. I was given a diagnosis this past June, that gives me until the week after Thanksgiving if I take it literally. I’m going to outlive that too. My tumors will likely grow again, but they may not. I may build my life and get to keep it. I can’t quite imagine that, but it could happen.

When I was diagnosed again, I was struck by not knowing anymore what resurrection meant. Here I was, fighting cancer twice. What does it mean to hold onto that particular hope, when your body is anything but certain of it? And now, given last week’s reprieve, I’m rejoicing again. But I don’t want my faith to be that conditional.

I’m not at a point where I know the disease will kill me. But remembering that, I’m reminded that we all will die. All I know about the afterlife is that God is love. I don’t think about it, or worry about it, ever. That isn’t what I’m getting at.

I’m thinking about resurrection and loving this life and knowing you’re going to lose it. I don’t even know how to frame my question, other than how do you claim that hope irrespective of your own body? How do you say the ultimate Yes to life, knowing that you yourself are going to die?

I have an appointment with my spiritual director in Sac today, on my way to the Ranch. I have tons of other things to talk with her about. But I was going to stop at the library up there and pick up Audre Lorde’s The Cancer Journals. I’m taking Bonhoeffer with me instead. Thank you, Margaret, for the idea. I don’t know how I’ve never read him.

Saturday, October 02, 2010

Odds

My doctor in Riverside wouldn’t tell me my statistics. All he would say was that there was no way of predicting, and they have people living twelve years after treatment. (We did discuss options, should the tumors start growing again.) I went online and looked later. I think I Googled “melanoma biochemotherapy” or somesuch.

CPMC (California Pacific Medical Center, in San Francisco) does a similar program to Kaiser. I couldn’t find the exact drugs online; it’s a safe assumption that they’re the same or very similar. (They list interferon, interleukin-2, and “three chemotherapy drugs.” I’m on both the immunotherapies, vinblastine, cisplatin, and temozolamide.) They report a 15% long-term survival rate.

That’s opposed to 5%, with standard treatments. Long-term survival is defined as five years.

It sobered me the first time I read it. Now? I’m used to this. I know my own history. I’ve been on the wrong side of 60% and the right side of 30. I know what I don’t control. The numbers focus for me: You don’t know how long you’ll be here. Live in now, and love while you can.

They don’t leave me cold, but they don’t freak me out either. And I think that’s why I’m sharing this. The difference between most of my friends and me is that I know exactly what I’m facing. I was told I had cancer two and a half years ago. I’ve had time to process what all of this means.

I know what most sane people would never choose to know. And I know I wouldn’t give it back. The knowledge of how finite my own time might be, makes me love my own life more.

I’m going to the Ranch next week, as per my usual pre-chemo routine. I’ll help host, I’ll walk, and I’ll write. I have a writing project that I’ve been kind of putting off, because I have no idea how to do it. I have to write a spiritual autobiography; it’s a process thing. God and me over my whole life, in five pages. The link to this blog doesn’t count.

Where am I stuck? Continuity between before cancer, and now. I felt a call before then, and it was enough to send me to school, but I’ll be damned if I knew what I was talking about. I found homeless ministry when I was in treatment the first time. I knew that documenting my life as a cancer patient was a ministry in itself. One is a passion; the other I do because it’s the way I’ve processed this illness and what it has taught me. There’s so much about both of these, that’s wrapped up in living on the outside. I've made my home where I am.  I was shocked, but not surprised, when I was diagnosed again. I can’t really imagine life after cancer. I know I’ll never be “normal,” at least as long as I remember. And I know I don’t want to forget.

Meanwhile, I still feel damn well, except from chemo.

I feel like John the Baptist out here. Can you hear me? I was as healthy as you, before I was told that I wasn’t. You don’t know the time you have. Love your own life. Live in now, and love while you can.

Wednesday, September 22, 2010

Resurrection

I want to write, before I lose my brain to chemo drugs for a week. (I'm in the hospital now.  Treatment starts tomorrow morning at 6.) But I don’t know if I’m capable of making sense. I’m still processing all of this.

It hasn’t fully hit me yet, that the disease progression has been stopped. I’m on the right side of statistics. How the hell did that happen?

I know what it means, in practice: I have one more chemo cycle after this one, and I’ll be closely monitored after that. I’ll be transferred back to my oncologist at home for follow-up care. I could have months or years or decades with no further change. The tumors could shrink. Or they could start growing again at any time.

They are not growing right now. “Now” just got bigger than, “This exact present moment.” Now isn’t tinged in fear anymore. Now means, from this breath I’m inhaling, until I start throwing tumors again. Now could be a short or long time. Now could be until I die of something else. There is no way of predicting.

I have a feeling that I won't be done with cancer.  And that's okay.  It's been my teacher, and a good one.  Maybe I just can't imagine this being permanently over.

I won’t have my life back. I wouldn’t want it. I don’t want to forget where I’ve been and what all of this has taught me. I’m grateful that I can touch two of these tumors. The reminders are there.

But I can live my life, again. I can give myself completely to the things that matter most to me. I don’t have to learn how to be fearless; I already know how to let love heal. I can let myself go into the wildness that graces the life I choose. I can be my strong, safe self. I'll live long enough to use the things these gifts have given me.

I felt threatened with no time. I had the time to go where I needed to go, and to learn what I needed to learn. Not just for my own emotional survival, but for the work in the world that I’m called to.

The tide went out a little, with the news I got this morning. The edge of the world got a little bit wider. But the ocean is never still, and I wouldn’t want it to be. The only true safety is the One who loves us all. That is enough, and more than enough. If you want to make a safe place, walk into the waves. Go into fearful places. Love the people who live there.

I’ve said over and over, God doesn’t give diseases. Biochemotherapy stopped the progression of this one. The idea that I’ve been somehow singled out gives me hives. But my path through this has been utterly bathed in grace. I can’t do the math. It doesn’t make sense to me. But it’s true. I needed to go as far as I went into terror, grief, and anxiety. And I had the experiences, fighting cancer twice, that made me go there.   I learned how to transform and be transformed by love. I remember the scared, fragile, broken kid I was two and a half years ago, and my whole life before that.  I know what my community and my God have healed in me.  I know what resurrection means. And I will have the time, short or long, to live into it.

If you see a stranger on the road, and she offers you bread, it could be me.

Take that, cancer!

For people not on my e-list.

I just got out of the doctor's office. He says I'm stable. As in, the tumors aren't growing. I'll have two more cycles (this week and October 13-20), and we'll watch me and see.

FUCK yeah.

It could be months or years or decades. And I'm getting what I wanted, really: the reminders are there and I know I still have it, but I can live my life.

There's no word for what I'm feeling--ecstatic comes close--but they can do whatever they want to me now. It's not remission, but it will do.

My friend hugged me two weeks ago and said it wasn’t now. She was right.

Love to everyone.

Kirstin

Monday, September 20, 2010

Two stories

A and I are flying back to Riverside tomorrow. I’ll get readmitted to the hospital on Wednesday. This will be my fourth chemo cycle, and in the past week or so, I’m finally at peace with it. I’m sleeping better, and I feel calmer in general. I know it won’t be as hard on me, physically or emotionally, as it has been in the past.

That peace may be because I realize I’m three months into this diagnosis and feel no worse, and am wondering hopefully if we’re wrestling me into remission. It may be because I’m over the trauma of the first cycle, and realize how much gentler the last one was, with someone who really knew how to support me (and perhaps a body that’s becoming accustomed to it). It may be because A is coming with me, and we know each other well.

More than the chemo, I am at peace with the illness itself. I think it can also be explained by these two stories. I thank God for all good gifts.

1. The rim of the ocean
Was it really just over a week ago? Every cell in my body ached for ocean time. I had just had a day-long, wise and loving conversation that I really wanted to walk with and think about. I would have my first PCOM meeting the next day. I needed sand, water, wind, and prayer.

That Saturday I went to Seacliff, in Capitola, home of the concrete boat. A and I had been there several times before. We were there in June, when I had just been fully diagnosed. It’s familiar, and not hard to get to. It’s only two hours from home.

I drove with my current musical crush—Laura Love turned up loud—and got there about an hour before high tide. I ate some gorgonzola pasta from Gayle’s, took off my sandals, unzipped the legs from my pants (yay for quick-drying fabric!) and started walking.

The water was a foot or two below dry sand, and the place where the slope flattens out. When I wanted my feet to get wet, they did. When I didn’t, I jumped out of the way. It didn’t take me long to realize that I was walking on the rim of the ocean. Dancing on edges, literally, even here.

I knew I was in no physical danger. I didn’t get wet above my knees, except when my shorts got splashed. If you’d only looked at my feet, I would have appeared to have been playing. But I got into the metaphor of it. I was walking, thinking about borderlands in general, and my work and my calling in particular. Fear/love; sickness/health; sheltered/homeless. How to articulate all of this, why these tidal zones are home. How I know that this is where my ministry is.

I got out of my head just long enough to realize something that left me wordless: My body was, in literal truth, dancing on edges. My thoughts only followed. This body that has been through so much pain and horror—that I have been cooperating with, in the name of health—still trusts the Spirit. Still can listen. Still knows how to quietly teach me. Still is absolutely, vitally connected.

I walked, in awe of that. Trying to find words. I could barely whisper, “Thank you.”

I got to the other end of the public beach, found the bathroom, and came out again. In those five minutes, the fog had blown in. I’d left my fleece in the car, and in my light layers, I was freezing. I didn’t want to be out there anymore.

I also had the rogue thought, that I didn’t want the tide to turn. I like being up here, balanced on precarious places. I’m getting good at it. I didn’t want to feel safe.

Catching the implication in that, there was no choice but to go back out. I walked back toward the car, my fleece, and the rest of my lunch. I glanced at my watch. Ten minutes, seven, five. I watched the water, wondering how I’d feel at the moment I knew the tide was turning.

I looked out at the lighthouse. I thought about danger, safety, and strength. And I kept walking. As long as I moved, I stayed warm enough. The water bathed my feet.

I realized something that only the ocean could have taught me. The moon pulls the tides, in and out, constantly. Water is always moving. Spirit is always moving. I’ve gotten comfortable walking with one foot in this world and one in the next. I’m becoming aware that I cherish the gifts that a potentially terminal illness is giving me. [A week later, I know that I am at peace with the illness itself.] Maybe I can help bring assurance of life to the dying. Maybe I can translate between them. I don’t know what it will mean yet, if I can stand with both feet firmly in this world, sharing the gifts from the next one. But I can walk in these borderlands, these tidal zones, all I want to. I can ask for welcome in homeless camps any time I like. Because I know that there is no true danger. Because this is where God has put me. Through gifts in the illness, by nature, or both, this is my home.

I walked back to the car, warmed up, ate the rest of my lunch, and went back out and played for an hour or two. I’d found what I was looking for. I was rejoicing.

2. Even this is gift
I spent several days last week on my geographic holy ground, the Bishop’s Ranch. I go there before every chemo cycle, to walk and write and be. I got to celebrate my birthday there. This happened the day before.

I ran into a friend at the Ranch, Wednesday morning. He’s a light for me, and a rare treat. I never know when I’m going to see him, and it isn’t more than once a year. He was in line for breakfast. I said to him, “The beast is back; pray for me.” And I told him that I really wanted to catch up with him.

He mingled with his own group, and then came and sat at the staff table with me. I told him all about my summer. The beach that weekend, the life-giving meaning in the owl (what if it’s not about death, but formation?), learning to dance on edges. How I had been so scared, and was now coming to peace. How I want to plant my feet in this world, with the gifts from the next one. How ridiculously alive I feel, and what I want to do with it.

He listened, completely with me. And he said, “I’m leading a retreat for Seniors of Grace (Cathedral). Now I know why we forgot the program this afternoon. Will you come and talk to them?”

I got shivers. And I said yes. He told me the outline of their retreat, and that I only needed to tell them what I had told him.

I went out hiking, and thought through it all again. I knew I didn’t need to be nervous. I had never done this publicly, but it totally felt right. I knew I could speak to them—but could I really take everything I’d been through, the spiritual wonderment and the physical and emotional crap that was the occasion for it, and use it all as gift? Could I minister to them, just by being me?

That’s what my friend had invited me to do. And that was amazing. That was gift to me.

We went over it again at lunch. The group’s focus was how they wanted to live, with finite time. Yes, I do think I know something about that. And I only need to tell my story. Okay. So I went back to my room, took fifteen minutes and a deep breath, and outlined things I wanted to remember to share.

I took my place in the circle in the Ranch House living room. He introduced me. I began by explaining my relationship to the Ranch (sort of adjunct staff), how I’d gotten to know my friend, and how we’d gotten talking that morning.

I said to them, “I’m a lot younger than everybody here. I’m turning 40 tomorrow. And, I’m fighting cancer for the second time.”

I told them stories: who I’d been before diagnosis, how it had changed me. Walking through the Cal campus, being told by a voice beyond my own that if I was open to this, I could learn from it. How my community responded in love to me, and how I learned to be open to that love. What it was like to make myself sick for a year. The experiences of this past summer.

He’d given me half an hour to speak. I didn’t think I’d ever fill it. But when I looked at my watch I had done so, perfectly. He directed them to go off on their own for half an hour to write, draw, be with themselves and the things I had just said. I thanked them for the gift they had given me. Some of them gave me hugs, just because they wanted to. Some stayed to talk. One asked me, “What do you think of the afterlife?”

I thought, “You’re asking me like I have any authority at all. Hmm. That’s a new experience. And I had no idea we were going there... but okay.” I told her, “I don’t think about it all that much. I know that God is love.”

Bumper sticker, yes, but true. And I’m not afraid of dying. I know that we will all be loved, then, like we are now—the difference may be that we’ll know it (if we didn’t). The experience of being asked that question will stay with me.

My friend and I went outside, and told more stories to each other about meeting Jesus in strange places (like the BART train). He went back in to lead the next phase of the retreat. I followed him to pick up my notebook and sandals. I went on with my day, being amazed at the gift I had been given.

I got to take everything I’d been through, and use it as gift to minister to others. I’m still almost speechless at the privilege. And I know it will happen more.

Epilogue
When I did my field ed at the Night Ministry, we had Eucharist outside in the Tenderloin on Sunday afternoons. (They still do; at McAllister and Leavenworth at 2, and in the Castro in front of the library at 5.) It was my first experience with street church. One day, I was around the perimeter of the circle gathered around the altar. I was trying to look welcoming: “Yes I know we’re having church in the middle of the street, but it really isn’t that weird.” A man came toward us. I’m guessing he was about 50, because he looked considerably older. He wore rumpled clothes, and dragged a suitcase. He wore a hospital bracelet, which for obvious reasons I zoomed in on.

He never spoke above a whisper. He seemed cautious and shy. I whispered to him what we were doing, and that he was welcome. Then—I don’t know how I missed what he was holding in his hand—he took a little green mesh basket of grapes, and offered it to me. Silently.

I took one. That was Eucharist.

I had completely forgotten that I told the group from Grace that story. I’m not even sure why I told them. The next morning, I went out for my usual after-breakfast hike. I stopped at the grape arbor for a snack (see where this is going?). I ran into my friend again, and I asked if he wanted some. I didn’t even think about it.

He took a grape. I went on my way.

He told me at lunch, he didn’t eat the grape right away. He looked at it, and thought about how I’d given it to him without thinking. In his own mind, he went to a place of spontaneity and radical openness. Hmm, his friend just gave him food. He told the group, when he got back together with them. (He’s the kind of person who’d be open to taking thoughtless encounters to spiritual conclusions. I’d have given him a tangerine, if I’d had one.)

The same person who asked me about the afterlife, remembered the story about the man with the basket of grapes. They used it, in their closing Eucharist. My friend ate the grape, for everyone.

When I think about it, I’m in awe again.

Thursday, September 16, 2010

Shifting

Again, this is for people who are not on my e-list.  Love to all.

Hi all,

Today is my birthday, and it's been wonderful. Thank you to everyone who's celebrated with me via Facebook, phone, e-cards, and birthday cake. (Ranch staff, I love you.) I've had an incredible week, actually, and I'm feeling ridiculously alive. I'm also three months into a diagnosis that gives me six, and I feel no worse. My thinking is shifting from, "I could die," to, "I could live. So how do I want to?"

I don't know what the results of my PET scan are. I'm not waiting for that before I send this out, because that's not what it's about. I went looking in my blog from fall '08 to see if I'd told a particular story. I hadn't. (If you know it, I was looking for a reference to when the homeless man gave me communion.) But for those whom I've met more recently, my first round of cancer treatment involved self-injections of interferon three times a week, between July '08 and June '09. (These followed a month of IV infusions.) It made me achy and fatigued and cranky all the time. I found a mention of wanting to focus more energy on praying over the shots when I gave them to myself. It hit me like a kick in the chest--not in a violent way, but, "Ohhh.... I haven't been doing that."

I haven't been praying over these chemo rounds, because I've been too freaked out by them. It's terrifying to know you're going to lose all control of your body. (Throwing up is just a metaphor for everything else that happens.) I hate everything about this. But I'm over the trauma now. I know what's going to happen to me, and I know what isn't. I don't like it, but I know I can tolerate it.

I'm going back to Riverside next Tuesday, 9/21. I'll be admitted from the 22nd to 27th, and fly home on the 28th. Andee's coming with me. She is friend, housemate, and chief caregiver. She also hasn't witnessed this since the first, most hideous, cycle. I know it isn't going to be that traumatic anymore.

Pray for me, like you always do. But also pray with us, because now I can join you. Hold us both, my medical team, and this community that all of you are, in sacred time.

love,
Kirstin

Monday, September 13, 2010

At church, at home, safe and rejoicing

I’m posting this from church, where I’m sleeping in the alcove for the first time since the night in May that I found the tumor. Safe Ground is in the Great Hall and outside in the courtyard.  The other host is outside with them; it's a calm, warm night.

It's like slipping your skin back on, and you're you and you're real and you're home and you love it.

We've hosted them twice a month all summer, and about twice in total I wasn't in Riverside or recovering. I'd stop by for an hour, and need to leave. I couldn't deal with other people's needs. I'd be annoyed at someone who came to me with their headache. Or want to engage, but I just couldn't get outside of myself and be present to that many people.

I came up here tonight because I thought I was ready. I was right. They're mine and I'm theirs and we've missed each other so much. It is so good to be home. I let people minister to me, and it felt right. And I told someone who needs to see a doctor badly (and knows it) that if she made an appointment and I could go with her, I would. She knows how to find me on Facebook. And it felt right to give her that, too.

I’m having breakfast tomorrow with two organizer friends, and then driving to the Ranch until probably Friday. I'll get to have my birthday up there. (A and I already celebrated it, and will some more when I get back.) I had my PET scan yesterday, and if the Sunday-Thursday turnaround time holds true, I'll find out the results that day too. I’m honestly not stressed about it, one way or the other.

That, too, is gift and grace.

Friday, September 10, 2010

Dancing on edges

I spent all day yesterday having buddha-time with a friend who loves me totally and truly sees me. All I want to do is go to the ocean and walk with that conversation—and I plan to do that tomorrow. Last night, I was asked to write a spiritual autobiography that’s due before Sunday morning. And two days ago, I found out what Sunday will look like: go to church and be blessed again for my birthday/being alive, stay there for my first PCOM (Parish Commission on Ministry) meeting, and dash back home afterward for my PET scan. I’m going to start what I’ve been passionately aching to get moving on, what so many people see me called to—and go immediately to cancerland to see whether the lethal disease I have is progressing, slowing, or shrinking.

I know a lot about dancing on edges. It doesn’t scare me anymore. I’m honestly happy to be up here. The process and cancer are wedded together—twisted so tightly that for now, they can’t be separated—and I think that for me, this is how it needs to be.

[Note: I’m going to be really careful when I write about personal aspects of the process. It’s going to get very intimate, quickly, and it needs its own private space to grow in. Also, I’ve read lots of bloggers who went into too much detail over their frustrations with the process, and I felt squirmy for them. My PCOM knows I’m a cancer patient; their job is to help me articulate my call. I know they care about me. The first thing I’ll tell them is I have this diagnosis and I’m in this treatment for it, but I am not fragile. I appreciate gentleness where I find it—but don’t treat me like I’m broken.]

Before I write what PCOM wants to read, I need to articulate this post. It’s been brewing in me for days, and I haven’t had time. I’m waist-deep in an epiphany that I haven’t found the language for yet.

I will either come back from cancer, possibly sooner than I’m emotionally prepared for, or it will kill me. I have one foot in this world and one in the next. That’s become not only comfortable, no longer scary—but life-giving and right. It almost scares me that life could be normal again. How quickly could being out of immediate danger (having evidence that chemo is working) lull me into the same denial I was in a year ago? I don’t want to go back to sleep. I don’t want to forget that all I know I have is now. I love this life. I know I could lose it. I don’t want to forget how to appreciate everything.

The medical protocol is less than enjoyable (though I’m no longer traumatized by it), and I’m very clear that I want to live. I want to plant both feet solidly in this world—with the gifts I carry from the next one. There is power there; light, grace, freedom, trust, and love. It’s a different way of seeing, an assurance and a way of knowing that I don’t know how to translate. I need to live with it for awhile before I can.

I want to live into being who this has called me to be. I know that no one ever will have power over me again. Sure, in a temporal sense—but not really. I am held in the only real power there is. I don’t know how to show you that the same is true for yourself, and for every human being. I know it’s part of the call; why else would I be drawn to people who have nothing they can hold in their hands? They have tons to teach me. I want to live through this, but not ever past it. I don’t want to lose this openness, this intimacy with the One who loves us all. If I forget where I’ve been, I will.

I know in my cancer-ridden bones that I'm only safe when my only safe place is this edge that I'm dancing on. Medical science hasn’t caught up to melanoma in any solidly reliable way. I can't trust my body to survive cancer on its own. My friends love me, and their love and touch are holy food. But they can't save or protect me. There is nothing else to hold onto. When I could deny the physical danger I was in—when I was in treatment two years ago, but my doctors hoped and I believed the surgery had cured me—that need for physical safety kept me from truly getting the point. The only safe place is the love that holds us all.

At the same time that I fear slipping back into denial, I know that I needed the wading pool before I could learn to swim in the ocean. I needed to gradually get used to the idea that I could die—not forty years from now, but at any time. If I had presented as metastatic two and a half years ago, I don’t know what it would have done to my head. I had time to learn to live with uncertainty. The time bomb that basically is my chest appeared on my PET scan this past June, and shocked my doctors probably more than it shocked me.

Yesterday, I told my friend the story of the owl. She gave me something I’d never thought of: what if this was not about death, but formation? In other words, what if I get to live with the owl’s gifts? I don’t think I ever asked the owl how to die. I’m so alive now, and I’ve assumed that she’d show me when the time came. I was at the Ranch, hiking on holy ground. I felt the owl’s spirit in a way I could only express in ecstasy and breathless terror. A week or so later, a high school classmate died of melanoma. He had what I most fear, physically: a brain bleed. Seemed obvious to me. But what if the owl wasn’t there to give me any assurance about my own dying? What if she was there to show me how to dance on holy ground? Owl flies at night; owl sees when humans can’t. Owl guides through dark places. What if she was there to show me how to live?

I get to ask all kinds of new questions. I don’t have to wait for PET results to do it. I don’t have to ask my doctors for permission to live. No fear, only embracing.

God doesn’t give diseases. But I had time to go where I needed to. I had time to witness the healing of wounds that only God in this illness could have healed. I regret nothing. I am grateful to be on this earth, alive, and who I am. What is all this, but grace?

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.”

Saturday, September 04, 2010

Body and soul, reconnected

I was Googling on Wednesday for a tune that was stuck in my head, and in my wanderings I found a Dances of Universal Peace circle in Sacramento that met Friday night. I used to do them back in Olympia, before I moved south for seminary. They were an important expression when I was searching, knew I didn't want to deal with the church and the patriarchy, but needed to be connected with God. I was involved with an interfaith circle up there for eleven years. My minister was really into them. She’s become a dance leader since.

I thought, you know I miss these. The cancer-body-dance connection (duh) didn't even occur to me. And I walked into the Quaker meeting house on 57th and H last night to check them out. The first thing we did was something in Arabic that meant, "taking refuge in God." I got that. And I was twirling around with people I’d never met, doing movements that are not at all part of the tradition I’m primarily committed to—and body and spirit found each other again. They just clicked back together, like they didn’t know why they’d been apart. It felt like coming home to a house I used to live in, and finding my clothes still in the closet.

I'm just not going to do Tai Chi. I don't have the discipline to seek that out and learn it. But I can do this. It's mostly Sufi and totally hippie—and it works for me. It's redemptive for my body, that's been assaulted so much and is under siege right now, and that needs a space to pray in. Standing/sitting/kneeling just never will get me there.

I’m not athletic. At rare points in my life, I’ve focused somewhat on care of my body: swimming in college because using the rec center was free, yoga when too many of my friends sang its praises, riding my bike because I have one and oh look, it’s Lent and I need a practice. But honestly, I’ve largely neglected my body. There’s no malice in that; it’s just happened because my interests were elsewhere. And now my body is being invaded by cancer cells, and again by chemotherapy which I’m cooperating in. I could almost hear it say, “Thank you; you remembered me!”

They did a dance for Quan Yin, who is something like a Buddhist Mother Mary. We were supposed to hold prayer in our hearts for whomever needed compassion. I was exhausted, so I sat on the floor in the center of the circle, almost underneath the dancers’ feet. I felt everything, and I held people I love who are in hugely difficult and emotional transitions. It was right.

When the owl flew across my path a year ago, one of the things that scared me was that I knew nothing of the Red Road. But I knew where that owl came from, and on a level beneath words I understood it. Was I being called away from everything I was committed to? No, I wasn’t then and I’m not now. These are not distractions. The Great Being That Matters gets the point. If God speaks to me in an owl that gives me shivers, or in the confluence of chant and movement, there we are. Jesus is always Jesus. I cling to the Resurrection like I always have. This all flows from the same Love. Forgotten parts of me are remembered, and they pray too. There are many ways of weeping and rejoicing.


Tuesday, August 31, 2010

Meeting Jesus

Right now, all is calm on the disease front. I have a PET scan on the 12th, that I’m not anxious about. I’m recovering more quickly from chemo than I ever have. I’m free to think about other things.

A and I went to St. Bart’s again on Sunday. I wanted another Carol fix before she retires this weekend. I also wanted to thank the community for being the support that they are. I’m almost never there—but I know that they care about me. And I wasn’t up for driving yet, so both of us went.

I got an absolute love-bath. I stood up and said, I'm not here that often so I don't know what people remember, but I'm fighting cancer for the second time. Someone I don't know asked if they could lay hands on me. I said of course yes. So a bunch of people came up and did just that. Then A said my birthday's coming (two weeks away). Which was close enough to Carol's, that she prayed for both of us.

And I mean prayed. Cancer can’t hold a candle to that. I felt completely, utterly blessed.

A and I talked on the way home about what makes Carol different. We finally figured it out: she meets Jesus in people. We’re close now; we adore each other, and both of us know it. But she greeted me as warmly when I would have thought I was no more to her than the friend of an occasional visitor. You can watch her see Christ in you. The effect is that you know you matter. And I know I’m not the only human being, still taken by surprise at that idea.

People reflect God to me all the time. A friend once told me I “embodied welcome.” So I know I have a similar effect. But I have no clue what I do. In some ways that’s good; I don’t want to lose my head to it. But then, how do you practice a skill you don’t know you have? How do you get better at it, if you don’t know it exists?

I’m in a race with the disease. I know that if I win, I will be clergy. I’m more sure of that than I’ve ever been. I’m barely practicing the ministry right now that I got my bishop's permission to explore. But I know it is in me, and so does everyone who sees me do it. I know that people value this blog as a cancer ministry. It is, and that’s one reason I keep it. But I’m on a trajectory toward being a priest to homeless people. That’s what my heart wants more than anything. And that’s where I know I’ll end up, if I live long enough.

(Here’s where the magical thinking starts: that is so me that I have to do it. Therefore, I will. I will beat this, and I’ll live. I can’t let myself go there. But God knows I want to.)

Everyone needs to know that they matter. Seeing my effect on others as I was beginning to deal with cancer is one of the things that healed me. We all need to be seen. We all need love.

My people are those who get told a thousand times a day that they are nothing. They need welcome more than anyone else I know. They need to be told and shown that they count. They need to know that they matter to God, and to the people around them.

I don’t know what I’m already doing. It isn’t intentional. But I know I can do what I have seen and felt Carol do. I can purposely greet Jesus in everyone I see.

It needs to be conscious, until it is natural. And maybe even then. What would the world be like, if we all consciously greeted God in each other?

Monday, August 23, 2010

Update in the middle of chemo round #3

If laughter could cure...Kirstin would be home now. She says that she's never been this calm during a treatment round, and that while chemo is awful, this is completely endurable.

The oncologist decided to keep her on same regimen, but do another PET scan a few weeks after this round (instead of waiting until after the 4th round), to get a better baseline for how fast the tumors are growing. They have grown - but not very much (2 mm was what I was told) - and not nearly enough for him to be worried. This is apparently not uncommon for this stage of treatment. Which is very reassuring.

And her companion for this treatment round, M-E, turns out to be a God-send. Not only is she wise, compassionate and comforting (which we knew ahead of time), but she also turns out to have a wickedly delightful sense of humor, and a previously unimagined ability to turn the worst vagaries of hospital life into hilarious song. As I said, if laughter could cure...

To all of you who care, and love, and pray...thank you, and thank you, and thank you.

Andee

Wednesday, August 18, 2010

Going quiet for about ten days

Again, this is for people who aren't on my e-list.  Thank you all for your presence and your prayers.

Dear all,

I fly down to Riverside tomorrow, and am scheduled to be admitted to Kaiser from Friday until the 25th. The calendar could change, with a possible change in regimens. I'll find out Friday morning if we're switching me to high-dose IL-2, and if there's a bed for me that day. (Sometimes you have to wait longer for ICU admission.) I'll find out when I start taking the treatment, whether I can tolerate it.

I know I can get through a cycle of biochemotherapy. But as you already know, there are questions about whether it's working for me. My doctor wants to discuss switching me up.

I know this about myself, regarding communication: I don't write while I'm having chemo. I'm too drugged and sick to even want to. And for the first few days I'm home, looking at the screen makes me more nauseous than I am. You are all welcome (encouraged! please!) to write to me--but I will reply in my heart before I do it with my words. And tomorrow is really going to be about having face time with the friend I'm going with and St. George's, soaking in life and love and everything that grounds me. I may not get to blogging or e-mail. (If I'm in the ICU starting Friday, I don't know what access I'll have.)

Keep storming heaven for me. Keep letting me know it. Know that your love helps carry me.

love,
Kirstin

Sunday, August 15, 2010

Inventory, or how I really am

Body
I have tumors in my chest wall that I’m sure are causing the pain there. It feels like I’m wearing a seatbelt, the way the pressure catches the right side. My left lung feels clear and fine. There could be any number of reasons why I’m coughing; I have tumors in my lungs (primarily right), and I live in California where everything grows.

I have a pain in the right side of my abdomen, not far from where the tumor was that re-ignited all of this. I know from reading my orders, which muscle is affected. There’s also soreness along the right side of my groin (possibly lymph nodes?), and a tumor on my right hip that sprouted the morning after I was discharged last time.

The tumor on one of my left ribs is still there. I’ve lost enough weight that it only slightly affects the way my bra fits me, so I think about it less.

I think I carry too much tension in my jaw; it’s been creaking and cracking.

The neuropathy in my hands and feet is slight just now; I have to consciously remember to take the meds they gave me for it. They tingle a bit; it’s like when you first notice that all of your extremities are asleep at once.

As of this morning in the shower, my hair is beginning to fall out. It could thin so slightly that no one notices. I could go completely bald. I’ll likely fall somewhere in the middle. Much of that depends on my treatment regimen; the chemo drugs are more suspect than immunotherapy alone.  (Though my hair thinned on interferon; everyone thought it looked better.)  I'm totally fine with the idea of looking the part.

I can’t stay asleep at night to save my neck. Sometimes I wake up anxious; sometimes grateful, sometimes I just wake up. And I stay awake for hours. So I’m tired all day, even if I nap.

And yet, I can still hike all over the Ranch. I’m here right now, preparing myself for the next round. I can't eat like a three-year-old here; I have to eat regular food. For the first couple days, I spent a lot of time under the plum tree. (I’ll eat fruit when I won’t touch anything else.) Now, I can eat almost normally. I just can't eat spicy foods.

Soul
I can have normal conversations—or what passes for normal when you know you hold death in one hand and life in the other. I can relax with my friends. LKT drove up today to visit me. We had a great time. There’s nothing normal about either the process or cancer. We talked exhaustively about both, and we laughed.

I researched clinical trials yesterday, for about half an hour.  It did not creep me out.

I went for a hike last night, on a trail I know very well in the daytime. I had just talked on the phone with the friend who’s going to Riverside with me next week. I watched the stars and the sliver moon, and I thought about how safe I feel even though I’m apprehensive about side effects and whether the whole thing is working.

Most of my fear is leftover trauma from the first round. I know what to expect from biochemo now. If my doctor switches me to IL-2, my team will orient me as well as they can. They give me enough of the sedative now. I won’t get the nausea drug I reacted to so badly. I’m learning what my emotional needs are, and I can articulate them. I’ll be with someone I totally trust, haven’t seen in a year, and really want to have time with. She makes a point of telling me already, that it will be okay when the drugs don’t let me access myself. I have a community of friends there, who take the edge off the yuck of it all. I’ll be wrapped in love.

As I walked on the trail in the dark, I noticed that my flashlight was dimming. The next step I took, my feet felt the earth. I am still grounded. I am safe in me. I will be safe everywhere I go. 

I met someone tonight, who is here with a group on retreat. She introduced herself, and asked if I work here. I did what I usually do with strangers: told her that I used to work here off-and-on; now I have medical issues so I’m up here just being. (I do still function sometimes as staff; I’ll be hosting tomorrow. I need to give back while I can.) Something in her reply made me tell her the truth. I said that I have to go to Riverside next week for chemo, and I’m here preparing. I explained that Kaiser sends everybody with kidney cancer or metastatic melanoma, which is what I have, to the specialist there.

She told me that she’s had three different cancers. She’s uninsurable now. She finished her last chemotherapy five years ago. Without thinking, I raised my fists, and looked strength into her eyes. She wished me well, and hugged me. As I walked away, I realized that we’d given each other solidarity. That happens all the time. And I’d given the same strength I willed her, to myself.

As for entering the process while I’m dealing with cancer: I have a mental image of a tightrope, but I’m not falling off. It’s not fraught with any actual danger. I won’t lose my balance. This is where I walk now. The message I got on Thursday carries me:

You could die. Affirm your life.

I have cancer. I am human. I am me. I will be me, as long as I have breath.

Saturday, August 14, 2010

Alive

Thursday morning, I got the e-mail telling me that we’re not sure the treatment is working.

Thursday afternoon, my priest and I met with the bishop, and I got the go-ahead to start the Process (tm) here.

Episcopalians know what that means. It’s code for "discernment"; it's the first step toward ordination. All I want to do is take the sacraments to the river. I choose to seek the church’s blessing, and I just may get it.

You take your Yeses as they come.

My bishop knew from Facebook that I’m in chemo. Of course he asked about my health. I wondered if it might be an impediment. It wasn’t. He was compassionate, not paternalistic. The feeling I got was, if I’m willing to risk jumping into the process, with the understanding of time that I have, he’s willing to support me.

I’ve written this post in my head a hundred times. I’m still not at terms with what I’m feeling. I don’t know how to describe the space between medical worry and affirmation of call. Joy, relief, sadness, and a fierce, fierce hope.

I’ve known for two and a half years that all I really know I have is now. I am still fully alive, and fully called into life. You embrace life as long and as well as you can.