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

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.

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.

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.

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.

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.

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.

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?

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

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.

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.

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

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.

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