Thank you

I woke up too early, tried to pray and couldn’t. So I wrote a thank-you letter instead:

I can’t possibly respond to everyone individually, even though I want to. Your e-mails, blog comments and Facebook posts have blown me completely away. Your love, grace, and perceptions amaze me. All I can possibly say is thank you. To each of you, to all of you, to everyone.

I asked you to tell me what I mean to you. You did. You tell me I am a light to you. You are and have been lights to me. And those who haven’t answered that specific request—I can feel your love, sense your prayers. I know how many arms embrace me; how many hands hold me up. And I know I couldn’t count them. I treasure my relationships with all of you.

You who receive me as family, thank you. Teachers and friends who challenged, nurtured, loved and supported me through seminary, thank you. You who keep me aware that New Orleans still loves me, thank you. All of you who saw the light in me before I could bring myself to believe there could be one, thank you. Thank you Trinity, for embracing and supporting me. All of you who have made the Ranch another welcoming home: staff and families, friends I have met there, thank you. Online friends whom I’ve never met in the flesh, but know through love, shared witness and time, thank you. Friends of Andee’s who love and pray for me, thank you. You who have given me gifts along the cancer road: love, hope, a rock, a circle of saints, hospital visits, your presence, prayers, and time, thank you. You who hosted, fed, and loved me on my walkabout in SoCal and Arizona: thank you, I love you, and I’m so glad I had that time with you. (Olympians, I still hope I can see you, and I love you so very much.) You who wrap me in love no matter what I’ve done, laugh with me and challenge me, stay with me in the rock tumbler and point my eyes to the love and consolation of God, thank you and I love you forever.

Thank you all for the gifts you freely and lovingly give. I’m so glad I share the planet with you. Gratitude for you keeps me connected to God. I go in and out of that connection, but I need it more than breath. Thank you for showing me so much love.

I know my prognosis in academic, statistical terms, thanks I suppose to journal articles I found while searching for melanoma brain mets and radiation. I’ll talk to my oncologist on Friday. I needed to make sure I said this, and I don’t know how long I’ll have the ability to. Thank you. Thank you. Thank you.

Love always,
Kirstin

Who am I?

People keep telling me, I am me and I will be. But who will I be, when two of the many possible side effects of brain radiation are speech and memory problems? How will I remember who I am? How will I keep from feeling rudderless, if I can't be who I've always been?

This is one thing I'm afraid of:  not being able to be myself.  Feeling sad and grieving and frustrated because I can't access the person I've always been, or the person I've worked hard to be.  Missing what I had, and won't have the ability to have again.  Not having the energy, memory, or resources to respond to the world the way I do now.

Put it in print, so I'll remember.  Tell me stories.  Tell me why you come here.  Tell me what connects you to me.  Tell me what you want me to take with me.  Tell me who I am, to you.

Game changes

I’ve been on e-mail and Facebook all day, soaking in the love-fest again. My friends amaze me. I wish you were close enough to hold me; I’m needing that right now. But your presence, even over e-mail, is huge. Thank you.

I’ve suspected the cancer was gaining on me. My palpable tumors (soft-tissue nodules right under my skin) are growing. I’ve had a cough that could be anything, or it could be cancer. Three times in the past two weeks or so, my lips went numb and then my left arm and leg. It washed through me and was over in a few seconds—but I reported it as a possible symptom, and that’s what led to the MRI. My doctor called this morning with the news. (My PET results are back, or should be, but he didn’t have them in front of him when he called.)

I have feared brain mets most. I don’t want to lose control. I don’t want to not be me. I was suspecting the cough, but still don’t have the data to confirm it. Clinical evidence of brain mets makes this all so very real. I knew biochemo wouldn’t prevent them; it doesn’t work in the brain. I don’t know if those five rounds of awfulness bought me time. They did buy me hope. And now... I’m just tired, scared, sad. I don’t have the reflectiveness I had last summer. If I take a walk on a windy day, I’m not going to be thinking, “This breeze will carry my memory.” I’m going to be soaking up the feeling of air brushing my skin, for all I’m worth. I don’t know how much longer I’ll be free to walk outside.

It really does feel like I’ve just shifted into end-game. I know brain mets can be affected by radiation. I don’t have any real hope that this will buy me significant time. I know, because I can touch them (and one of them hurts), that the tumors are growing. There are promising experimental trials, but the brain mets have to be dealt with first. There’s nothing proven to work against melanoma, across populations. (This or that may work against this or that genetic mutation. This other has some effect according to these studies; none according to those. This, that, and the other extend life by an average of seven months.) I want to be me, and I want to be whole, and I want to be strong. I’m not ready to give up. But I’m scared.

I’m afraid of the brain mets, and of the treatment for them. I can do chemo; I’ve done it. I’ve never had radiation.  I want it to work.  And I'm afraid of the effects on the rest of me, when I do it.

I knew this could come, was coming. I don’t want it now. I’m not ready. There are still things I want to do. Even to say that there’s no telling whether I can, feels too hopeful. I’m symptomatic. When I wasn’t sick from the cancer itself, but from the treatment, I wasn’t in denial but I could put death in the abstract. I can’t anymore.

I’m not the feisty warrior I was last summer. I’m just doing what I have to do. I just want to be me as long as I can. I really got today, that I don’t control time.

Pray for me, pray with me.

Brain mets. Fuuuuuuuuuck.

I had an MRI last night.  Oncologist called me this morning.

They're small, and not causing edema or shifting of brain contents.  But, I have them.  They may be responsible for the transitory numbness I've had.

The next step is a radiation oncologist, probably next week.  I asked my oncologist how effective that would be.  He said it would shrink them, or make them stop growing, or make them go away.  There's no telling whether they'd come back.

I'll be more reflective later.  Had to get this out there.

UPDATE:  Here's the e-mail I sent out:

Brain mets. !#$+&^$$#+*%!!!

I had an MRI yesterday. I was told I wouldn't even get the results until Wednesday or so. My doctor called me this morning with the news. They're small, and not causing edema or shifting of brain contents. They may be responsible for some transitory numbness I've had (which was the reason he ordered the test). The next step is a radiation oncologist, probably next week. They'll call me to set that up.

I asked my oncologist how effective radiation would be. He said it would either shrink them, or make them stop growing, or make them go away. So there is hope in that. There's no telling whether they'll grow back.

Had a PET scan last Sunday; I've been suspecting worse lung involvement because I've had a cough for more than a month and my palpable tumors are growing. He didn't have that in front of him. Brain mets take precedence over everything else.

Trying to get in to UCD to be seen. My (Kaiser) doctor isn't opposed to that, but he said that brain mets rule me out of most experimental protocols.

Just got off the phone with Andee. This changes the game in one other dimension. If you are local, we may need you to drive me to radiation. I'll see if I can get anything closer than Rancho Cordova. I don't know how often this will be. If you can be called on for that, please say so.

Pray for wholeness; pray for strength; pray for access to effective treatment.

Kirstin

Sickness, pain, faith, and prayer

I posted the other day that I found another tumor. Immediately I went back to the top of people’s prayer lists. I totally appreciated that, and I started thinking about it too. Then a friend told me that she’s had chronic pain for decades. The first thought to fling itself Godward was, “Take that away from her. She doesn’t need it.” Hmmm.

I read all my posts from last June, and remembered. What I want prayer for—what I really want in all of this—is wholeness. I don’t believe God gave cancer to me. I don’t believe that any cosmic being thought I needed it. But I know how I’ve used it. I know it could kill me, and I don’t want to die. But neither would I ever give it back.

I don’t believe God gives or takes diseases. Sickness isn’t a punishment. It isn’t a test. It’s an evolutionary process (cell division, virus replication) gone wonky. Sometimes people tell me, “Miracles happen.” I just cringe. I know how healthy I appear. I know how alive and full of life I am. I feel so completely, thoroughly blessed just to be here—and that’s where my energy comes from. I already get to love this life. That’s miracle enough. God doesn’t pick and choose who gets cured. If you survive stage IV cancer, it’s because you and your doctors found a treatment that would help you. Not because you’re too special to lose.

I know when people pray for me, they go exactly where I went with my friend in chronic pain. “Take that away from her. Make her well.” I don’t fault anybody for that. It’s love. You want your friends to be happy and healthy, and fully who they are. But I believe that God is with us in our suffering. God doesn’t, or can’t, take it away—but God can and does love us fiercely through it. I would not be who I am right now, were that not so. And I wouldn’t want to be anybody else. (Do I want other people’s lives, sometimes? Prosperity, health, self-confidence? Oh yes. But that’s a different question.) I know how loved I am. I know it because I can show you where God has been in my community, in the last almost-three years. It’s just so obvious. I’ve had lights all around me, showing me things and giving me gifts that help me truly heal. I know how tightly I am held. And I would never want to lose that awareness.

I want my friend to be free from pain. I don’t think she needs it; I doubt there’s anything good in it, and I wish she weren’t suffering. But if God were going to lift it from her, there’s been plenty of time in the last three and a half decades to do so. That just isn’t how God works.

My friend has a friend, who is very much like what A is to me. (Begin with “refuge,” and go from there.) This friend is seriously sick; right now with a complication of everything else she has. When I imagine losing A, I’m filled with so much fear it takes my breath away. I hurt for both of them. And the only way it makes sense for me to pray is this: “Love them. Hold them both. Love them, and make damn sure they know it.”

Because that, I know, God has done and will do.

Pray for C, D, A, and me.

On a walkabout

I’m out on a road trip, friend-visiting spree, and half-formed quest. I left a week and a day ago. This is the first chance I’ve had to sit and be with it all, and catch up.

I’m at a seminary friend’s house in Whittier, CA right now. I got here last Tuesday. Before that, I was in Riverside over the MLK weekend. From here, I’m going to visit another seminary friend in Tucson, and check out border ministries while I’m there. I’ll stay for a week or so with a high school friend in Phoenix. I may stop in Joshua Tree in one direction or the other. I’ll camp up the coast on the way home.

My excuse for doing it now was my friends’ blessing in Riverside. Otherwise I would have avoided the city like the plague; it gave me flashback nausea just seeing those mountains, and freeway signs driving there. But the ceremony was beautiful, and I was really glad I could be there with and for them. I got to spend time with the people from St. George’s who had ministered to me when I was there for chemo. I worshipped with them on Sunday. I’d been to a mid-week Eucharist, when I’d had a later intake appointment, but had never made a Sunday morning. Paul brought me into the center, and they all laid hands on me. I love that kind of prayer-bath.

He prayed that I be an example of God’s love and beat this disease. That’s so not my theology. I can’t and won’t hold God or my body to that kind of pressure. But it is their love, and that came through.

A came down for that weekend, and we got some really good time to talk. I had driven for seven and a half hours on Friday, gotten out of the car at my friend Diane’s, put my hands on my back to stretch it—and felt a new soft-tissue nodule just to the right of my spine. I literally found the monkey on my back, as soon as I'd sought to escape it for a month. It's small, and may not even show up on the PET I have to schedule for as soon as I get home. I'm breathing as well as anyone breathes Southern California air. (With lung mets, that’s what we watch.) My neuropathy is bothering me, especially when I walk, and I keep trying to figure out whether it feels balanced. Left-leg weirdness could easily be hormonal; without the numbness, it reminds me of what happened when I first started getting periods. Chemo threw me into a decade-early menopause. (My oncologist doesn’t want me to take hormones, because I’m doing well so far and there’s a connection between pregnancy and melanoma.) All of this will be sorted out by the scan and follow-up when I get back. There's nothing I can do about it right this minute. But I'd be lying through my teeth if I said I never thought of it.

I had these concerns, that I didn’t want to tell the Riverside people but needed to share with A. We’re both being really, really hopeful, but trying to be realistic too. If I have to go back into treatment, as long as it’s not high summer when she can’t get time off, we’re doing something just for ourselves first. And I’m planning (health permitting) to be in Olympia in April for the Procession of the Species. We talked about her meeting me in Eureka on the way back south, visiting another friend of ours, and coming home along the coast. And we had time, wandering around downtown Riverside, to check in with how each other really was. It’s almost easy for me, being the one whose body has cancer, to grit my teeth and go through whatever is next. I worry about people who love me and have to watch, or care for me through it.

I don’t know yet that I have to do anything. I won’t know for another four weeks or so. But that tumor is there, and it’s new at least to my experience. Are my lungs holding steady? I don’t know. Have I sprung a leak, and what do we do if the answer is yes?

What I do, emphatically, is live in the moment right now. I’m still trying to scratch out a Morning Prayer routine. Cindy and I said it together the other day. She went in to work this morning. I went outside, sat on the steps on the back porch looking over the canyon that drops off from their back yard, and said it alone. In the space for intercessions, all I could say was thank you. For the warmth on my back, the air on my feet, thank you. For all who love me, thank you. For that bird flying over there, thank you. I sat for awhile when I was done, just bathing in morning.

Alene and Melissa’s blessing, besides being beautiful, gave me a lot to think about. I saw seminary friends I hadn’t seen in a year and a half. Three who had visited me in the hospital; both of them, and one whose home I’m in right now. Some were friends for a time. Some are friends for life. That was obvious, and it’s okay. I’m the one with the life threatening diagnosis. And I think I’m the happiest of most of us. Sure, I carry student debt that if I live, can break me financially. But I can’t do anything about it right now. And so I don’t have to. I don’t have to scramble to find adequate employment, or worry if I don’t get it. I have both the necessity and the grace of living in the moment. The undercurrent of this trip is, “See friends while I know that I’m well enough.” I can go for a month, on this half-formed quest, and I’m not even delaying my process because I’m finding things that clarify the call for me.

I have this time to be open to what happens next. I didn’t leave the house with a fully planned itinerary; I knew who I wanted to see and roughly when. A and I got talking in Riverside, and now I’m going to camp up the coast when it’s time to go home. I’ve gotten to check in with myself every step of this: what feeds me, where do I want and need to be? This morning, I e-mailed friends in Arizona from different parts of my life, and figured out when I’ll stay with whom. I know I’m going to check out border ministries when I visit a seminary friend in Tucson. I’ll get there sometime Tuesday. The next week I’ll be in Phoenix, with no greater agenda than hanging out with a high school friend. (We’re much closer now, as adults.) I need to go on the National Parks website, and see if I want to or could camp in Joshua Tree on the way back. It’s a long enough drive from Phoenix to the coast, that if I want to stop there and just walk around, I’ll be looking at my watch the whole time. But I have friends on the coast who said, you can call us from down the block when you’re ready to stay here. I’ll do that for a night, and see them. Then I’ll camp up the coast until I’ve found all I need to (really, three days on the ocean will give me more peace and clarity than I can yet imagine), and be home in time to pick things up again at church. I have a healing prayer commitment on the 13th, and the option of CCOM if I get some preparatory writing done. They were clear with me that this is all on my schedule; they’re not rushing me. I still feel pressed between my body and the timing of the process. But that’s not these people’s doing. They’ll grill me, because that’s their job. But I definitely feel supported by them.

I’ll have my first follow-up PET as soon as I can when I get home, and see my doctor on the 23rd. Either life will continue as it was before I left, or I’ll be back seeking some kind of treatment. I know that I’ll never be truly off the cancer bus again. I lost control of this so long ago, that losing control doesn’t scare me anymore.

I got to see someone who’s been a walking sign of grace to me, on Wednesday. I didn’t have any idea I’d get to, until that morning. She’s been in a similar place to where I am, which is why we know each other. She was speaking in a work context, in a meeting I was invited to attend. Over and over, she said this: Live in abundance. Don’t live with a mentality of scarcity. She was absolutely right.

I get to do this. I get to travel from love to love. I have now. And knowing I have now, being fully able to live right exactly where I am, is everything.

“We thank you for our creation, preservation, and all the blessings of this life.”

Walking with possibility

I’m at the Ranch until Friday. I came up here to walk, work on a writing project that’s been intimidating me, and because I love their Epiphany bonfire. I missed it last year; I was probably hosting homeless people at my church in Sacramento. I’ll do that again Monday. But I’m taking a break from leadership responsibilities. I’ll pick them up again when I come back from my road trip, at the end of this month or early February. I've only barely been able to engage, since I've been back on the cancer bus. Either it was emotionally or physically too much, or both.

It’s wonderful hiking weather here. The ground is wet and muddy, but it’s sunny and the air is clear and beautiful. The creeks are running; I love the sound of little waterfalls. They restored my favorite trail, along the creekbed. I’ve been walking, and thinking.

Someone on an unrelated message board posted a link to the Association of Cancer Online Resources (ACOR) listservs. You have to join a board to look at its archives. They have a caregiver list too. I didn’t sign up, for the obvious reason.

I poked around the melanoma board this morning, and came across a posting from someone who said he’d been stage IV for 22 years. His immune system, with significant help, has been holding the disease more or less steadily for that long. He feels the struggle in his body—but he is alive and capable.

It was the first time it hit me: That could be me. I could possibly survive this. I’ve been living within the five-year mental window, as if it were gospel. There is the other five percent. Anyone could be them. Even me.

The Riverside program staff told me miracle stories whenever I asked a direct question. I distrusted them for it. I’ve had two or three people tell me they had it on authority from God that I’d be okay. That just creeps me out. Why would God tell you something about me, and not tell me directly? The God I trust does not give or take diseases. To tell me so is totally false assurance.

A friend hugged me last summer and told me I’d have time. That was totally fine. She was going on how my body felt in her arms, and her own intuition. I wanted her to be right, and I still do. If you’re speaking of your experience of me, you can say what you like. And you are welcome to pray for me. But don’t tell me I’ll be a miracle. If me, why not others? Why not everyone?

Back to the point: What I read this morning was, “I have survived this.” Not, “These patients you’ll never meet,” and not, “God will keep you safe.” This was someone who has been through more hell than I have, and who is alive. That’s what finally got through to me.

I may have time, more than I had dared to truly insert myself into. So, what do I want to do with it?

Well, what I did just now was e-mail the poster and thank him. I also just remembered that I’ve been wanting to thank the maintenance staff here for repairing my favorite trail. I got into conversations in the office after my walk yesterday, and forgot. I’ll probably stop and leave them a note on my way to dinner.

I’m still on Facebook too much, and I’m not doing the Daily Office yet. I have been praying Compline the past few nights. It’s a bedtime prayer, and I love it. I love the language, the rhythms, the silences. In the space for intercession, all I want to say is thank you. Thank you, One who listens and loves and holds us all. Thank you just for being here.

I can’t think in big, broad brush-strokes yet. One small, intentional action at a time.

Intentionality

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

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

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

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

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

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

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

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

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

Incarnation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Then find that life again, and live it.

Hair

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

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

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

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

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

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

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

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

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

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

Yeah, I’ll trade my hair for that.



Before

After

Wearing a socially acceptable hat



Breathing room

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

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

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

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

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

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

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

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

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.