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

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.

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?

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.”

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.

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?

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

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

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.

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.

Treatment update-unclear news

This is for everyone who's not on my e-list.

Hi all,

I just got an e-mail from the program director in Riverside. Here is what she said:

Your PET scan is back and Dr G will talk to you on Aug 20 about it, he said he may continue on Biochemo but may also change to high dose, but wants to have a conversation with you.

I called her back and she clarified: there are some increases in tumor activity, but the amount is questionable. This means two things: we're not really clear about whether the treatment is working, and I have a week to not know whether I have a whole new regimen (high-dose Interleukin-2, with its own set of side effects) to get used to.

How am I? Short of panicky. Oddly, both worried and trusting. Preparing; I can feel myself gearing up, both for change and for news I don't want.

Pray, of course. Be here. Love me in whatever ways you think of; I need that right now.

Kirstin

The gift in the illness

is waking up to love.

A whole lot of stories go into that--but it really is that simple.

Thank you to all who are here for me, loving me through this.  And thank God, for the grace to see.

Gifts

I’ve awakened in the middle of the night, consistently for the past nine weeks. My body has gotten into that habit. In the past two nights, I’ve gone from waking up anxious to waking up grateful. I am finally able to absorb all the gifts I'm being given. Not to be overwhelmed by them—but to wake up saying thank you.

What has changed? What has shifted, which has freed me so? Perspective. I still don’t know whether the treatment is working. I don’t know what I’ll be in for the next time I go south. I don’t know whether I will survive on this earth.

But I rejoice in all these many gifts:

Someone I treasure, but see too rarely, told me what I mean to her. I mean really told me. She wrote me a note that I’ll never forget. She’s always been on my back-pocket list; “these are good people.” Our paths don’t cross often. I had no idea that she loves me as much as she does, or that she pays such close attention. People, do this for each other. You don’t know the gift you’re giving, until you receive it.

I got a visit from a high school friend, about a week ago. We’re in touch on Facebook, but hadn’t seen each other since 1988. We’re both going through big things: mine medical, hers other. We were able to really be there for each other, and to laugh a lot too.

I had this conversation with my priest on Sunday, so gloriously normal:

“Goodness gracious! You don’t look like everything you’re going through.”
“Thanks, right now I don’t feel like it either.”
“We’re meeting with the bishop on Thursday, right?”
“Yes. At 2?”
[punches Blackberry] “Yes. Let me show you the tattoo I want.”

There is a fundraiser happening for me on the 21st, put on by Safe Ground, hosted by Trinity. As it happens, I can’t go because I’ll be in Riverside. I’ve been out of the scene for two months, and I’ve hardly ever been at church since I started chemo. But Safe Ground values me enough to have proposed this. Trinity’s happy to host it.

Said fundraiser was announced on Sunday. I got up at thanksgivings time and said, “These flyers are about me. Thank you for doing this.” A was with me, so she could drive me to my PET scan afterward. A visitor came up to us as we were getting ready to leave. I’d never seen him. He told us his best friend’s story with cancer (note that I was sitting with mine). He encouraged me that his friend successfully fought it, and I could too. Then he handed me $100.

A Facebook acquaintance messaged me this morning, to thank me for the way I go about this. She has her own health problems, and the way I’m public about my struggle and my faith helps her. Again, it is so good to be truly seen. And to know that what I’m doing, as much as I feel like I’m muddling most of the time, helps another.

A sister survivor gave me a gift: well, two really. One was a surprise hospital visit; I was expecting her later. We talked, and she gave me a bracelet. It’s a circle of saints, given to her by women who had been through harder challenges than chemotherapy. They inspire her, and apparently so do I.

I put it on immediately and wore it all week, but I couldn’t wear it at home. I tried, and freaked out. It reminded me too much of the hospital. A week and a half later, about two nights ago, I realized exactly what she had given me. I understood that this path is all about living a fully human, sacramental life—with and even through my wounds. I can be a priest to homeless people; I can even do it in the hospital. People are walking through hell with me right now. In turn, I will do that for others—knowing literally in my cancer-ridden bones, that the story ends in resurrection. Death has no power. I am safe, even with an IV dripping into me 400 miles from home. There is life after cancer, even if we coax it into dormancy and it stays there forever.  All of us have gifts to share.  All of us are safe, loved, and free to be our truest selves.

Fear—including anxiety about going back to chemotherapy—evaporated for me in that moment. I felt myself shift from hoping for life, to being invested in it. I’d forgotten how natural and good it feels to live.

I’m going back to Riverside in about a week, accompanied by one of my angels whom I haven’t seen in over a year. She appears when I need her. We’ve been reconnecting through e-mail. It’s so life-giving. She sees with her heart, and that’s where she speaks from. She’s teaching me more than I could have imagined about grace, love, and what ministry is.

I have a community in Riverside that has embraced me. They bring food, blankets, and themselves to keep me company. They mostly only see me when I’m loopy and sick. They call it a privilege.

Cancer is not an interruption in my life. It is my teacher, and right now this is my life. These gifts have come to me because of my illness. I am able to soak them in, now, and to be healed by them more than the drugs ever could. I wake up not scared, but grateful. I know that I can truly live.

The gift in the illness is simple, really:  it is waking up to love.

If you recognize yourself in this, or if you're doing any of these things for others, thank you.

Because I love this song

The recording quality isn't that great, but you'll catch on to the words.