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.