Metastases

"Lungs, bones, several other places."  It hasn't begun to hit me yet.  My friends are stunned by this--to me it's still a scientific puzzle.

I mean, I'm healthy.  I feel as well as you do.  What the fuck?!  Apparently they're small enough and diffuse enough so that they're not in my way.  I'm breathing okay, and haven't had any fractures.

My doctors are as shocked as I am.

We're talking about interleukin-2.  The doctor who will supervise that (not my primary oncologist, based at Kaiser Riverside) hasn't called yet.

More when I can begin to process this.

Holy food

I don't have the results of my PET yet; it hadn't been read by this afternoon. Nor do I know whether what I had was a metastasis or a new primary. My new oncologist is going to connect with the pathologist in Oakland from two years ago, compare results, and call me tomorrow. I'll also find out whether there are any appropriate clinical trials.

I like my new doctor. He seems really on it. I told him I didn't have a spleen, while he was examining me. He already knew I had spherocytosis. He'd clearly read my stuff. (He asked how anemic I'd been. "No clue. I was almost six.") And he got what I was saying when I asked him, "WHAT is my body doing?", even as the only answer he could give me was, "Melanoma is unpredictable."

He was very concerned that I get into dermatology care up there; I'd missed my appointment two weeks ago in Oakland while I was recovering from surgery. I won't have to call; he'll make the referral.

He didn't feel anything odd during the examination, and he thinks (from that and because I generally look healthy) that the PET will be clean. I told him that my last one was too. And I asked him, "What's your hunch? Do I have more of this that we can't see yet?" He said, probably yes.

The short of it is that I probably am growing more of this crap, we don't know if my immmune system will squash it (clearly it didn't here), interferon "wasn't very effective" (duh), and the best next step will be frequent observation and possibly a clinical trial. Chemotherapy doesn't really work on melanoma. IL-2 (immunotherapy, very effective for a very few people) is only used against advanced disease. So I'll go in every couple of months for examinations. I won't be made miserable like I was on interferon. I won't be hideously, artificially sick, unless and until I develop something that immunotherapy could fight.

He knows my oncologist in Oakland. Said he'd be shocked by my news. I've been wanting to connect with that doctor anyway, so I sent him a note when I got home.

I trust the care I'm getting. I don't trust my body. A kept saying afterward, "You're alive." I didn't even really hear her. I couldn't process it; couldn't believe it. I wasn't ready to hear that I'd been given my life back.

We stopped for mango lassis and garlic naan for the road, because we both were hungry. I called one of my teachers, because I had told her I would let her know my medical news ASAP and because I wanted to hear her voice.  Then we went to the 5:45 Eucharist at Trinity. We'd been planning to; we both knew we would need it.

The presider was one of my mentors. A and I were the only people in the transept when she arrived. She asked how I was, and we talked for a minute. She invited us to light the candles while she vested.

It was the feast of St. Basil, so we used Prayer D. I didn't know I needed it, but the words were food. (I'm a Prayer B junkie for this phrase: "... out of death, into life.") She read a paragraph during her sermon, and asked us to repeat what had struck us. I barely more than whispered, "Rising from the grave, destroyed death."

I'd never been to the Monday Eucharist, so I didn't know the rhythm. I had no idea we'd have anointing. She asked me to share the reason I was standing up for it. I said I'd found a tumor three weeks ago that had come back consistent with metastatic melanoma, had just come from the doctor, didn't know any test results yet but he seemed positive, and the best thing for me was a lot of observation.

She cut in with "and a lot of oil," and invited the others to lay hands on me. I don't even remember the words she prayed, other than "be with her every step of her process." (I'm sure she knew as well as I, the double meaning in that.) She took. her. time. I breathed it in, held by many hands, wrapped in the presence of love.

I had taken my sandals off during the sermon, because I had to feel the ground. I think I'll go barefoot in church from now on. The prayer and the taste and the oil... helped me feel my bones again. I was thinking at some point, the only thing I can do now is live in the moment. When you're eating holy food, eat it and rejoice. When you're giving holy food at the river, give it. When you're integrating, do that--but don't try to do it all the time. Life itself is prayer.

If this crash course in uncertainty teaches me anything, it has to teach me that. Bones and skin and breath are sacred. What we do with them is wondrous. I ask for prayer and am flooded with my communities' love. That is where God is.

I got incredibly freakishly lucky, medically--I found this and had it removed before it spread. The blessing is that I've been to the edge twice now. I know I'll go there again; there is no way of predicting how often my body will throw these. I'll never be allowed to forget. It's both harrowing, and something to be unspeakably grateful for.

Afterward, A and I were alone in the transept, also where the columbarium is. The cross on the wall is this huge metal Celtic thing with figures of Jesus and the gospel symbols. I'd seen it before, but never studied it up close. I had to touch it. Traced the figures, ran my fingers down it and back up, around the circle. Put my hands on somebody's niche. My own heart. And back to the cross again. My body was praying; my mind had no words.

Breathe.  Rise.  I am coming back to life.

Questions

My PET scan is tomorrow. It's feeling like moment-of-truth time.

I remember two years ago, the night before my PET, feeling like I was on an airplane and the gears were engaging beneath me. I was going, I didn't control the speed or the height and there was no getting off. It's different now. I've been worrying myself sick for a week and a half; I know my blogging doesn't really reflect that, but it's true. I'm in a spiritual place of openness, wonder and closeness to reality, at the same time as I want to hold on to this life. Want to be healthy. Want to never have had cancer. And that just isn't going to happen, even if the scan is clean.

The power that I'm held in is love and truth. I also have this human body that I don't know how to trust. I don't know how long I'd have to wait after this recurrence to relax, to get up in the morning and go about my day without looking over my shoulder, or staring too closely at my surgical scars. A friend I haven't seen in over a year greeted me today (at her husband's ordination) with, "Peace on your journey and what the FUCK?!" She was absolutely right about both.

I'm just looking forward to getting some freaking answers. Regardless, almost, of what they are.

If I'm clean, then there are no tumors in me that are large enough to find. If this was a metastasis, will there be more? If this was a new primary, how often will my body throw those? (If there's any way of predicting that, I don't know it.)

Either way, then what do we do? If I'm clean, do we put me on a trial, or watch me and let me feel well? If I'm not, which of the two options (immunotherapy or chemo, both awful) do we try?

And if I'm clean... do I just whiplash back into life? How on earth am I going to do that? One of my mentors gave me a clue today. She came up to me at the ordination reception. She knows what's up with me, and she's been there when I've asked her to be. Today she didn't mention it. She said, "We have extra food. You can take it to the river." She gave me the work she knows is mine. I got to be normal for one afternoon. It was right.

How do you live a coherent life, with a body that feels well even while it randomly threatens to kill you? And I know it's not threatening anything; the disease process is mindless. My body and I are not enemies. I just don't know how to honor or trust it. I talk about wanting to be whole, and I think I have meant being spiritually courageous. I don't know how to be holistic: mind, body, spirit all fully embracing life.

I do think that once I get into tai chi, that will help. Any kind of exercise, really. I need to love this body, even while I'm weirded out by it. Treating it as a hostile alien is exactly the wrong approach.

I skimmed Sister Outsider when I was too young to appreciate it. I remember that Lorde writes about loving her body again after breast cancer. I checked out The Cancer Journals from the San Francisco library, but wasn't in the right frame of mind to read it. Maybe now that would help.

I don't think I know anybody who's had recurrences of their cancers. If you have, I have a question for you. How do you navigate living your life?

Illness as teacher

To be alive: not just the carcass
But the spark.
That's crudely put, but ...

If we're not supposed to dance,
Why all this music?

~ Gregory Orr ~

I've been e-mailing with one of my faculty. I've seen her twice in the past year; most recently when I went back for graduation, three weeks ago. She hugged me and said I looked great. When everyone asked how I was that day, I said, "Healthy." We didn't know I had cancer growing inside me.

She sent me a link to this Yahoo group the other day, with the posting I quoted above. Since then, I've been thinking about the illness itself as my teacher.

Of course cancer is all I'm thinking about. But it's oddly less scary the second time. I've lived with an alien before. I know what this means. I can be matter-of-fact about very serious things. A. and I have these kinds of conversations: "If you knew you had five years, what would you want to do?" (Play violin, amongst other things.) "Do you want to work with the homeless because you want to do it, or do you want to grow that beyond when you can do it yourself?" (Good question; I need to have that conversation with Kathleen.) "Oh, and we have to get the advance directive done."

This is life now. We talk about the things that really count. It's oddly comfortable; compelling, really. Not a threatening or fearful thing.

The oncologist could tell me on Monday, "Your scan is clean; we'll just watch you. Come back every four months." I will know that it could reappear anytime, and break loose any one of those times. I have now had melanoma twice.

They gave me interferon to prevent recurrence. Ha. I almost want them to find something, so we have something tangible to fight. Even though I know that the tools just aren't there yet, and I really do want to live longer on this earth than metastatic melanoma would give me.

I'm not afraid of sickness; I'm staring straight at it. I've lived long enough with cancer at my shadow, that dying is merely transformation. I'll feel sad for the people who will miss me, when it's that time. I know that I will be alive, in ways that are unimaginable. The presence of God with me now, shows me that.

Even the loss of control is becoming normal. I sobbed on the phone with Kaiser last week, in pure fear and frustration, and have felt better ever since. My doctors know what they know, and know what they don't. If the way this disease acts in me can help medical science find better tools to fight and prevent it, then sign me up for a trial, please.

The only time I've gotten really creeped out was when an acquaintance told me a story that I know is sacred to her, but which scared holy hell out of me. A relative of hers had melanoma. Someone he knew prayed over him. The X-rays which had been full of spots, then came back clean.

She offered to pray for me. I think I gave her a noncommittal "okay." It took me days to come to terms with why that whole idea makes me uncomfortable. Partly it's that I don't believe in a god who does selective healing or curing. If you can take suffering away, then do it or don't--but only for a few makes no sense. Mostly, though, I don't want the journey taken away from me.

This will sound weird. You may think I'm getting far too friendly with this illness. I'm not fey; I'm in no way courting death. However. I've been waking in the very early morning, whether I take half a Xanax at bedtime or not. It's quiet, before light. The house is asleep. I'll start thinking about everything, and I find myself curled up next to sacred fire.

It's a presence that keeps me warm. It's not really about purifying; I don't feel like things are being burned out of me. Maybe it isn't time now; maybe I'll go through more of that later. I know I did before. I don't ask this presence questions, and it doesn't answer them. We don't converse in words. But it is my teacher and my companion, and I am absolutely assured that I will not be alone.

It isn't God delivering me from illness. It is God with me in the illness, being alive.

I was diagnosed with cancer two years ago, in the seminary community. The dark corners have had candles burning in them, all this time. Cancer taught me to walk through the things I'm afraid of, to let love into the scary places, to be open to experiences that dance on the edge of life. These teachings stay with me. I cherish them. I alternate between feeling frustrated I have to do this again, hopeful that it won't be hideous, and in this wildly open, adventurous place. This is sacred fire that warms me, that lights my path. I know I can go where I need to, spiritually, physically.

And I want to. Don't pray to make it easy. Pray for the presence to be truly whole.

Thinking about healing

I'll have my PET scan next Sunday at 3:15. Meet oncologist-the-next on Monday. We'll go over results, history, treatment, next steps. We'll have an idea of what we're dealing with.
As I've said, if it's just that one site, my choices will be to do nothing but watch, or to take a clinical trial. That will be true whether it's a metastasis or a new primary. If it's gotten, it's been gotten. If there are more.... it means we do more. That will mean either a fresh course of time-buying sickness, or an experiment.

I know if we can't find any more cancer in me, I want to take a trial anyway. I want to throw something at it, even if that something may not work. My first oncologist told me that a PET can miss half a billion cells. That was an abstraction until two days ago. A friend at church who's a breast cancer nurse (and a wonderful, wonderful soul) translated it: four millimeters. Something just slightly smaller than a pencil eraser. My primary tumor, two years ago, was six.

I know that I will never know I'm clean, again.

A. knows it's my decision. She doesn't want me to choose sickness (therapy side effects) again, if the scan doesn't show anything. She said, you've basically lost two years of your life to this already. You write that you want to really be alive. She has a good point... and I don't know where I am with it. I won't know really, until we're presented with clear choices. How sick am I willing to be, without clear benefit? How much time do I want to lose to chemical sickness, when I could be feeling healthy?

I've gotten, again, that life is finite. You can probably safely assume that you'll be here in five years. I can reasonably hope for that, but I can't expect it. Even though I feel well right now, and even if my scan suggests health, I know what might likely be the thing that kills me. It's like living with a chronic progressive illness, while you feel well. I don't know how to live in that space. But I will need to, for my own mental health.

It's a simple question, with global implications. "You know you have now. What do you want to do with it?"

We know how I respond to interferon. That won't even be presented to me again. It's a one-time thing. I took it for a year. Recovery lasted almost as long as the treatment itself. Eleven months to the day after finishing it, I found the tumor that was diagnosed as cancerous.

Insert string of expletives here.

I have so many people praying for me, that I can't keep up with my inbox. Why? Because I asked. I was afraid, and I knew I wanted my community wrapped around me. You all are here. Your presence overwhelms me in all the best of ways.  That is healing in itself.

We went to the ordinations in San Francisco on Saturday. I had friends being ordained and I wanted to be there for them. I also knew it would be healing for me. I would see people I hadn't seen for a year. They love me. They know what I'm going through. Their presence would lift me up, hold me close, be enough.

I got all the hugs I needed and wanted. And +Marc did a really amazing thing. He gave me a smile like he knew I knew he got it. Communicated me. And anointed me.

I was not expecting that. Hadn't even thought of it. He had the presence to be in that kairos time with me, and to anoint me for healing. It was a visual exchange of love and courage. A prayer for trust in the presence of God. A cross in holy oil. I felt it soak into my soul.

Curing is physical.  Healing is the whole person.  I ask my friends to pray--and I know that they pray I be well. Or they write back that they're angry I have to do this again. Or draw me hearts on Facebook. Or tell me to be fierce with the Kaiser system, when I need to.  They are connected with me and there for me, in all the ways that they can be.  This love heals me.

I stood up in church on Sunday, and said that I'm back on the cancer bus, that the signs look hopeful, and that I'm grateful for life and for community. People clapped for me. It was a bit overwhelming, but it also worked. I could feel them saying, "Go, you can do this." I heard my name on the prayer list. I flinched just recognizing that I needed to be on it, even though I'd asked. I know that people pray I be cured. And honestly, I totally get where they're coming from, and I pray the same way when my friends are hurt or sick. But I still have reservations with the idea of God selecting certain people to be delivered.

What truly heals me, is God and my community being here with me. It helps the most to know I'm not in this alone. It is love that holds me up, that makes the choices in front of me bearable, even life-giving and good. Love makes whole, and makes possibilities possible. I don't believe that there was or is any cosmic reason I've gotten cancer twice. I make meaning out of it, and I learned how to use it for healing. I don't believe that God gave it to me. Why might I believe that God would take it away?

I know people whose illness gave them the faith that mine has given me. They went through it in loving community. They believe in the same loving God. They died. Something gets all of us. While I do want to live, I don't want to be excluded. God has no reason to cure me and not you. I'm not that special.

To be healed is to live your life, whole and free and real.  To love and to be loved; to know that love matters more than time.  Who we are is more than our bodies. We each matter infinitely to the Love who created us.

My doctors don't know how to cure cancer. I know how to heal the world. Love everyone like you love me when you're afraid you might lose me. Pray that I make the absolute most of the time I have, whether it's two years or five or forty. And pray that every human being does the same.

Cancer teaches me. We are in this world together, for as long as we each are here.

Optimistic update

I was too tired to fill people in last night. My oncologist here (whom A and I call "Dr. GoodGuy" to distinguish him from his colleague Dr. Evil who endangered me) examined me, listened to how I said I was feeling ("hmmm, I'm so vague about my body right now, but I don't think I feel sick"), asked me if the surgeon got it all. He said he thought it would turn out to be just this one site. Ordered a PET to make sure. (I'll call radiology and schedule that Monday, if they don't call me first.) Ordered a blood test. Gave me a scrip for Xanax. Referred me to an oncologist in Sac whom he trusts, both for second opinion/more information and for follow-up care. (Dr. GoodGuy is going on vacation from the 8th until July. His department consists of three doctors--him, Dr. Evil, and one other whom I don't know.) Made a follow-up appointment (or suggested I do that? I don't remember) with himself six weeks from now, in case I still want to discuss things with him or if I need treatment that makes more sense to do here. Told me that if it turns out to have been just this one site, my choices are to do nothing (NOT happening) or to join a clinical trial--and there are lots of those.

He takes for ever, but he listens. And he had no problem going back and explaining something I didn't understand, including how he didn't understand it either. Random bits of what I may be misunderstanding/misremembering: Metastasis in one site is stage IV but acts like stage I. It's way better to have it in one site than in more of them. If we've gotten it, we don't have to do anything right now but there are trials to join if I want to. (Again, I want to.) This could be from my tumor two years ago (bad) or a new mutation (less bad). There's a test to find out. Results of that test don't really make a difference in treatment, if it's only the one site. I can ask all my questions again to Dr. Sacramento, because I'm only understanding in bits.

Basically, if we've gotten it that's really good news, and I can go back to my life.

I won't do normal chemotherapy now; I'll sign up for whichever trial is appropriate. At this stage if there are multiple sites, there is one chemotherapy they use. It's miserable and the results are mostly palliative. There is an immunotherapy that works wonders, Interleukin-2--if you're in the small percentage of people whom it works for. (The interferon I took for a year was also an immunotherapy. I called it chemo because my friends were familiar with that term: something you put into your body that fights cancer and also makes you miserable.) A friend whom I think is an oncology nurse (she works for a hospital system in Sac) sent me a link to this newsletter. I listened to the podcast detailing melanoma treatment strategies. Apparently according to those doctors, the standard of care is a clinical trial. That's where we're at with treatments we can stand on--there aren't any.

Where am I? Guardedly hopeful. The blood test came back normal, which is a really good sign. My consultation in Sac is scheduled for Monday the 14th. I'll have my PET before then, with enough time so that Dr. Sacramento will have the results. I'm kind of waiting to breathe until that's clean.

I got really dire news on Wednesday: a path report came back "consistent with metastatic melanoma." I went immediately into warrior mode: fight for your life; all you know is that everything matters. And then yesterday, a reprieve. A. hadn't really eaten for two days. She was so relieved that she got hungry while Dr. GoodGuy was still talking. I told her, I think I'm more guarded because it's my body. My body clearly makes this crap. We caught this one. There will likely be others in my lifetime. I'm going to always have to make sure I have health insurance. I'm going to always have to be vigilant. But I can stop thinking of life in five-year blocks now; the chances just got higher that I'll be alive at the end of this one.

This is going to sound really weird. I don't want to have metastatic cancer floating around in me, obviously. And no rational soul wants to need chemotherapy. But I almost do want something to show up in my PET--because I want to see my body cooperate with the tools they'd give me to kill it. I feel like, well crap, interferon didn't work. I want to see with my own eyes that something does.

I need to do some physical activity that honors my body. A. and I were talking about Tai Chi. Neither of us knows anything about it. But yoga never stuck with me, and I want to do something just to get rid of the mentality that my body lets these tumors in.

Get back to my life. What does that really mean? It means, do the things I love. Keep the worry about cancer only in the back of my mind: maybe as a simple reminder that life counts, but don't obsess over it. It means, I had a recurrence of the thing that might ultimately, on some unknown date in the future, kill me. Live like I know I've only got now, because that is the truth. I could be blindsided by tumors at any point in time.

It also means, fix the things I think I'm doing wrong. Throw myself in where I've only gotten my toes wet. Face the things in my everyday that scare me--things like finding a way to make a living doing homeless chaplaincy. Organize my time so that I get the projects I want to do, done. I don't know why that is harder, but it is. Maybe that will be easier now, because I've had this reminder that only now exists.

I'm falling back to sleep. I must have come to peace with something.

Sifting and gathering

I don't even know where to start. There's so much clattering around in my head: remembering, broken bits of thoughts. It's not even like I'm in a mood to write. It's that I know if I don't, I'll wrap myself tighter around this anxiety. I'll lose track of my mind, my soul, myself. I need to be grounded. I need to know and to feel that God is holding me. I need to know that my friends can love me through this. I need to stay in touch with who I am. I need to be clear, and wise, and strong.

I am so glad I wrote so much last time. Those words help me now. They help me remember what I learned to hold close. They help me remember that I know I can do this.

"Do this" doesn't mean, "survive." I have no idea yet what is or isn't inside of me. The best possible scenario right now would be to have no more metastases. I won't know until we get the scans done. No, "do this" means come through it, human and whole. Whether we're looking at disease management over time, or something that will kill me quickly. Once melanoma has metastasized, it is very hard to remove. I'll never know I'm clean, again. It will never be like I never had this.

So many medical questions. I have an appointment at 4 today, and I can start asking them. I want to transfer my care to Sacramento for community and resource reasons, even more if we're talking about multiple hospital admissions. My best friend lives here in Stockton (and I with her); the rest of my physical, face-to-face community is in Sac. She and I need them: me because I need all the love I can get; her to take the pressure off of caring for me alone.

I knew that metastasis was statistically possible. After interferon, my chances were 60/40 in my favor. I also knew I had a completely clean sentinel lymph node. How does this happen? Where did the cells go? My doctor examined me all over (physically feeling for swelling) every few months; the last time I saw him was in April. He always focused on the left side of my neck, the likeliest place for trouble. He said I looked great, and to come back in September. I notice a lump below my rib cage in late May, have it removed the next day, and it's cancerous? How?

Last night, I read the final paper I wrote for the homiletics class I was taking when I was diagnosed two years ago. I wrote the paper late, obviously, and turned it in on the Friday before I started interferon. It was a reflection paper covering the whole semester; we could articulate our learning any way we wanted. I am so glad she made me write the damn thing. And that I did what I did with it. My writing then looks so much more fluent than it feels to write now. There is wisdom in those words, that I need to remember.

I need things to mentally chew on. I need to read something, practically anything. I need to ground myself in something other than anxiety over the cancer fight. I need something to relate my experiences to; I need a dialogue.

Or not; if I approach that in the wrong way, it would only be a distraction. I was doing what was academically required of me. That mental/spiritual integration challenge didn't just drop in my lap.

While I read, I remembered. And it occurred to me, "You can be open to this too."

I'm not saying that I am open to it. I'm in full warrior mode. What is this, give me the information, tell me where the tools are so that I can fight it. But I also know that the choice to be open both to fear and to love, healed me in ways that are still working within me.

Yesterday, I completely lost my shit with Kaiser. I was sobbing incoherently over the phone. I finally figured out what I'm afraid of. I'm not scared of sickness, or of dying. What scares me is the loss of control. And that has already begun.

I wish I had an advanced microbiology degree. I wish I understood what was happening inside me and why. I wish I knew that there was a treatment that would unequivocally work, and what that treatment would be.

I don't. I have a liberal arts degree and a Master's in Divinity. The challenge with melanoma is that there is no magic bullet. And so I have to trust my doctors. I have to know that they understand the research which reads like Greek to me. I have to trust them to know what treatments are applicable, what choices to present me with.

I do know that they'll do the best they can. With one exception, each of my oncologists have been smart and wise and kind. What I know from my midnight Googling (plug in "metastatic melanoma" if you want to be scared) is that you can try this, or that, or the other thing; they're all thoroughly unpleasant and they might or might not buy you time. This is an elusive, tricky, insidious illness.

You don't need to tell me that I have to be positive. I know. But I'm all about the information right now. Give me what the research says; let me know what the realities are. Then, I can bring all of myself to the table, so to speak. I can be ready to hear the worst, even as I want to hear the best. Of course I want to live. It's more important to me that I be whole, than that I assume I'll be on the right side of statistics and survive. I can't know that. Until last week (really, two days ago), all the signs told me that I was and would be clean.

All of this, and right now I feel physically well. It's completely surreal, to fight for your life when you don't feel sick.

My oncologist in Oakland--I'm grieving the logistical loss of him--gave me the best advice I've ever had. "Make the choices that make sense to you, and do what makes you happy in your life." I hold on to that now.

Late-night wakefulness

I'm restless and I can't sleep. I'm nervous about the unknown; I'm not really afraid of sickness or of dying. It's... oh shit, here we go again. I know that I can do whatever this asks of me. I'm emotionally healthy and strong, and at least for now I feel physically well. I've done this before and I can do it again, though I won't know until tomorrow (at the earliest) what the protocol might be. I have no clue what my prognosis is. I can do interferon again if I have to--but I don't think that's a repeat choice. I've never been irradiated. The idea of radiation skeeves me, but I'll do it if it's what's in front of me. That's how you get through this: the next thing, and the next thing, and the next.

I know this is very hard to treat. I don't know what the treatment even is. And I know that I will never know I'm clean, again.

I feel like I'm betraying my body, if I don't trust it. But right now I don't know how to trust it. Body wisdom sounds like a lovely idea. My community flooded me with prayers tonight. I trust my people to be there. I trust God, though not for any specific outcome. I know I'm held and grounded in love.

I know I have now. That may be all I ever know.

I've been here before. I learned things that I will forever be grateful for; found strength that will help me through what is to come. But still. Fucking cancer.

Okay, here we go.

All I can do right now is copy the e-mail I just sent out:

Some of you know I had a mass removed from my abdominal wall last week. They told me it was a lipoma; harmless something like 99% of the time.

My pathology report came back today, consistent with metastatic melanoma.

That is literally all I know. I expect my oncologist in Oakland to call me tomorrow; I'll do a phone consultation with him. And see the oncologist here (Stockton) who is not the one who tried to kill me two years ago. The very least it means is scans and probably more surgery. I don't even know the protocol, if interferon would be done a second time.

I don't know what it means for my ministries in Sacramento. I know I want to continue doing everything I can. And I know that right now, I feel physically fine.

Keep praying.

In search of a functioning car

My 17-year-old Voyager is facing major repairs, and possibly the end of its life. I am in search of leads for another car, preferably a long-term loan or outright donation to me. It doesn’t have to have been manufactured in this century; all I require is that it not threaten to strand me on the freeway. I'm equally comfortable with a stick or automatic.

I’m immersed in ministry with the homeless. I’m learning about the field, how I want to do this work, and the whole process of applying for grants to fund myself. I’m committed to this path, and am physically healthy and able again after cancer and chemo. It’s been a long road to get here.

I live about an hour from everything I do. I make that drive several times a week. I do have friends I occasionally stay with, but right now it's difficult to get there. I’m planning to move closer when I’m economically ready. (I'd take the bus, but different counties have different systems, and they don't connect.)

If you live in Northern California (or farther away and you'd like to visit), might you know of anyone who isn’t driving anymore, or who has a car they’re not using? Do you know of anything (very) cheap and reliable?

Thank you for anything you can think of!

Living into resurrection

I posted this as my Facebook status this morning:

Today is my Easter. Two years ago, I was diagnosed with cancer. I am healthy, and whole, and alive. I am grateful for everyone who walked with me through that time, and still. Every day is resurrection.

I remember that phone call—but now it feels like forever ago. So much has changed. I finished school, finished chemo, am out in the world now (rejoicing in the power of the Spirit!). I’m in a community now, which didn’t know me then. I’m beginning to do the work I was created to do.

What I learned then, is what I know now. The cure was medical. What truly healed me, what continues to heal me, is love.

I had to go to that horrible, fearful place—I had to be more afraid than I’d ever been, of a real mortal threat—to open myself up enough to the love around me, in my friends and in God. What I found, made it once and forever okay to be exactly the person I am.

I stood up in church today and said, I have two Easters. People understood. I got so many hugs afterwards—not out of pity for having been sick, but rejoicing in this cherished life. They know what cancer looks like; some who reached for me were survivors. And they see me here, healthy, alive, and claiming resurrection. Our deacon thanked me for bearing witness; she said that there are people here now who are going through it. No doubt. And I’m very aware of how lucky I am (I don’t say blessed, in this instance) that we caught it when we did.

I had two conversations today; one with a friend who is living through something far more horrifying than a cancer diagnosis, another who has gone through similar transformations but with a different cause. We bore witness to each other, the truth our lives have taught us: Love heals.

It sounds simple. And it is, but it isn’t. I keep talking about it, partly because I’m still processing all of this and learning how to carry the blessings of that time (love, freedom, knowing what’s important, healing), into this current life. And I know that I bear a responsibility to share the story I have lived. You can die and be resurrected. We are as strong, as faithful, as loving, as open, as we will need to be.

I remember the voice that spoke to me, two years minus a few days ago, while I was walking by myself through the Cal campus: “If you’re open to this, you can learn from it.” I clung to that for all I was worth. That is why I will tell you, cancer healed me.

Christ is in every one of us. Always. We have what we will need.

Alleluia, amen.



(Thank you to Cantus Mundi for the music.)

John Muir and Hudson Stuck

Preached at the 5:45 service.

Feast of Muir and Stuck
Luke 8:22-25

Happy Earth Day!

Today we honor John Muir
and Hudson Stuck, environmentalists.
One became a natural theologian;
the other an Episcopal priest.
Both sought adventure in wild places;
both fell in love with God’s creation in the mountains.

Muir was born in Scotland in 1838.
At age 11, he emigrated with his family
to a farm in Wisconsin.
His father was strictly religious.
One factor in their emigration
was to get away from the Church of Scotland;
it was too liberal for the elder Mr. Muir.
John and his brothers and sisters
were made to read the Bible daily in childhood.
He memorized most of the scriptures.

He took classes in geology and botany
at the University of Wisconsin,
but never graduated.
He went to Canada in 1864,
possibly to avoid the Civil War draft,
and returned to the US in 1866.
Muir worked as an industrial engineer in Indianapolis,
until an accident changed the course of his life.
A tool he was using slipped and struck him in the eye.
He was confined to a dark room for six weeks,
not knowing whether he would see again.
When he did, he saw the world,
and his purpose, as if for the first time.
Muir wrote of this resurrection experience,

“This affliction has driven me to the sweet fields. God has to nearly kill us sometimes, to teach us lessons.”

From that point on,
he determined to follow his own dream
of exploration and study of plants.

In September 1867,
Muir walked 1,000 miles from Indiana to Florida.
He had no specific itinerary,
except to go by the "wildest, leafiest, and least trodden way [he] could find."
After contracting malaria on the Gulf Coast,
he abandoned his plans to go to South America.
He set out for California instead.

Muir landed in San Francisco.
He visited Yosemite for a week,
and fell in love with it.
The mountains opened up a sacramental awareness in him.
He wrote,

“We are now in the mountains and they are in us, kindling enthusiasm, making every nerve quiver, filling every pore and cell of us. No temple made with hands can compare with Yosemite... The grandest of all special temples of Nature.”

When he returned,
he built a cabin over a stream,
so he could listen to the water.
He lived there for years.

Muir threw himself into the preservation of Yosemite Valley,
and fought for it to become a national park.
In 1903, Teddy Roosevelt accompanied him on a visit to Yosemite.
On the way there,
Muir told the president
about state mismanagement of the valley
and exploitation of the valley's resources.
Even before they arrived,
he was able to convince Roosevelt
that the best way to protect the valley
was through federal control.

Muir shed the restrictive practices of his father’s faith,
but his awareness of the love of God
grew to include all of nature.
He developed a core belief that "wild is superior."
He came to believe that God was always active
in the creation of life
and thereby kept the natural order of the world.
In Travels in Alaska, he wrote,

“Every particle of rock or water or air has God by its side leading it the way it should go; the clearest way into the Universe is through a forest wilderness; in God's wildness is the hope of the world.”

During his lifetime John Muir published
over 300 articles and 12 books.
(He hated writing, but he made himself do it.)
He co-founded the Sierra Club,
which helped establish a number of national parks after he died,
and today has over 1.3 million members.
Muir has been called the “patron saint of the American wilderness”
and its "archetypal free spirit."

Hudson Stuck was a priest and environmentalist.
He was born in London in 1863,
and educated at King’s College.
In 1885, he tossed a coin:
heads for Australia; tails for Texas.
It came up tails,
and he went to work as a cowboy and a schoolteacher
before entering seminary at Sewanee in 1889.
He was ordained in 1892,
and after four years
became dean of St. Matthew’s Cathedral in Dallas.
There, he became a social reformer.

His sermons and newspaper articles
raised every conceivable issue
from lynching and gun control
to the need for recreational areas.
He founded a night school for millworkers,
a home for poor women,
and St. Matthew's Children’s Home.
Stuck was instrumental in having
one of Texas’ first child labor laws passed, in 1903.

He was happy in Dallas, but restless,
and he moved to Alaska in 1904.
As the archdeacon of the Yukon and the Arctic
he administered 250,000 square miles in the interior of Alaska.
Traveling by dogsled in winter and boat in summer,
Stuck ministered to miners and loggers,
and defended the rights of Native Alaskans.
In 1913, he organized and led
the first successful complete ascent of Mount McKinley.
He died of bronchial pneumonia at Fort Yukon, Alaska,
in 1920.

The gospel connections were hard for me to find,
at first reading.
It’s a lovely story:
Jesus is in a boat with his disciples;
a storm comes up and they get scared,
and he calms the storm for them.
But it would be easy to make the wrong interpretation.
This isn’t about controlling the weather.
It isn’t about being the boss of nature.
And it’s not saying that natural disasters won’t happen if you have faith.

What does Jesus have in common
with these two mountaineers?
What are all three of them doing?

Jesus is in a boat with his disciples.
A storm blows in.
The boat fills with water,
even as he sleeps through it.
The disciples panic, and they wake him up.
He speaks to the wind and the waves,
and the storm dissipates.

John Muir fell in love with nature.
He fought to get Yosemite Valley federally protected.
He lost the battle for Hetch Hetchy,
and grief over that nearly broke him.
He used the power of the written word
to communicate this love for the natural world.
And once you share in this love for creation,
you share in the work to protect it.

Hudson Stuck was a social reformer before he ever climbed a mountain.
He advocated for millworkers, women, and children
before moving to Alaska
and doing the same for the Inuit people.

They are all advocating.
They’re using the powers that they have,
to speak up for people and places
who can’t speak up for themselves.

“Storm, be still.”
“Mr. President, protect this valley.”
“State of Texas, stop exploiting your children.”

They are all working in love, for love.
This is God’s call to us.

Today is Earth Day. What can we do right now?

Recycle. Create less trash to begin with:
consider the amount of packaging when you buy things.
Join or start a community garden. Feed your own neighborhood.
Give what you don’t use, to a food bank.
Eat local food.
Reduce the amount of fuel consumed
in getting your vegetables to your table.
Take shorter showers. Save water.
Turn out the lights when you leave a room.
Walk, ride your bike or take public transit instead of driving.

Get involved with TREE,
Trinity Respecting Earth and Environment.
I asked Tina to tell me more about them,
because I really didn’t know.
She sent me last year’s annual report.
They got recycling going here.
They applied for and got a bike rack from the city.
They took environmental field trips.
They sold stainless steel water bottles and solar cookers,
like at last Sunday’s Earth Day fair.

TREE meets on the fourth Wednesday of the month,
at 6:30 pm in the upstairs conference room.
Go see what you can do for the earth.

I will close with a piece from John Muir, from My First Summer in the Sierra:

When we try to pick out anything by itself,
we find it hitched to everything else in the universe.
One fancies a heart like our own must be beating in every crystal and cell,
and we feel like stopping to speak to the plants and animals
as friendly fellow-mountaineers.
Nature as a poet, an enthusiastic workingman,
becomes more and more visible
the farther and higher we go;
for the mountains are fountains—
beginning places,
however related to sources beyond mortal ken.

Amen.

Holy Saturday

I am reaffirming my baptism at the Vigil tonight.  There are many, many reasons for wanting to do it particularly now. After cancer, every day is resurrection. I know that my actions within the homeless community claim my identity as a baptized person of God; I need to do it ritually, as well. And I’ve been wanting to do it since I came back to the church—before I thought of seminary; before I was sick. I’ve been going to the Catechumenate on Thursday nights, since I organize Thursday community dinners. (We feed homeless and church people, at the same tables, together.) I go because I enjoy the practice, and the conversation.

One of our priests mentioned reaffirmation a few weeks ago; she said that anyone could do it at any point. That was all the permission I needed. So I told her, wrote my name in the book, and here we are.

Because I’m reaffirming, I went to the Holy Saturday liturgy this morning.  I'd never been to one.  All of us candidates for anything (baptism, confirmation, reception, reaffirmation) were called up front for an Ephatha rite.  This same priest anointed each of us, may our ears and our mouths be opened.

She came to me... and put her fingers directly below my left ear, on my cancer scar.  It felt all sparkly. The nerves aren't normal from the surgery yet, and there was power in her touch. I knew she was saying, "May your ears be opened so you can hear the words of Jesus."  But all I could hear was, "Be transformed for the whole world."

I told her about it afterward.  She knows the cancer story, though I met her after it was done.  She knows why this touch was holy.  But that anointing wasn't her intention.  It was God's.

Amen.

Ikon: The Harrowing of Hell

Down through the tomb's inward arch
He has shouldered out into Limbo
to gather them, dazed, from dreamless slumber:
the merciful dead, the prophets,
the innocents just His own age and those
unnumbered others waiting here
unaware, in an endless void He is ending
now, stooping to tug at their hands,
to pull them from their sarcophagi,
dazzled, almost unwilling. Didmas,
neighbor in death, Golgotha dust
still streaked on the dried sweat of his body
no one had washed and anointed, is here,
for sequence is not known in Limbo;
the promise, given from cross to cross
at noon, arches beyond sunset and dawn.
All these He will swiftly lead
to the Paradise road: they are safe.
That done, there must take place that struggle
no human presumes to picture:
living, dying, descending to rescue the just
from shadow, were lesser travails
than this: to break
through earth and stone of the faithless world
back to the cold sepulchre, tearstained
stifling shroud; to break from them
back into breath and heartbeat, and walk
the world again, closed into days and weeks again,
wounds of His anguish open, and Spirit
streaming through every cell of flesh
so that if mortal sight could bear
to perceive it, it would be seen
His mortal flesh was lit from within, now,
and aching for home. He must return,
first, in Divine patience, and know
hunger again, and give
to humble friends the joy
of giving Him food--fish and a honeycomb.

--Denise Levertov

Lent V

John 12:1-8
Lent 5

“You always have the poor with you, but you do not always have me.”

WHAT?!

Could Jesus have said anything more jarring?
Our community gives a lot to the Safe Ground movement.
I help coordinate Trinity’s response to their needs. 
I know some of these people whose portraits look out at us. 
And I know that every other time Jesus spoke of poor people,
it was to bless them
and to love them.

And I know how willingly this community responds. 
I’m here on shelter nights. 
I know how gladly people give of themselves,
their time, their energy.

Jesus’ words here feel like a slap. 
They go against everything else he ever said. 
They fly in the face of his tradition. 
No self-respecting Hebrew prophet would ever say anything like that. 
And Jesus knew it.

That’s because money isn’t the point. 
Look at the rest of this scene.

We’re in the home of Mary, Martha, and Lazarus. 
Mary, the contemplative. 
The one who would rather sit at Jesus’ feet,
and take him in with her eyes and her heart,
than do anything else in the world. 
Martha, always responsible
for making the household run smoothly.
Always busy, bustling around.

Lazarus.  Brother to Mary and Martha. 
Friend to Jesus,
like a brother to him as well. 
Lazarus, whose death made Jesus weep,
and whom he had raised from the dead
sometime shortly before. 
The author of John writes
that the raising of Lazarus had caused the Temple authorities
to conspire to kill Jesus. 
Jesus knew he was in danger;
he “no longer walked about openly.” 
Mary and Martha and Lazarus knew it too.
The air was electric with danger,
heavy with the smell of impending death.

Lazarus was at the table. 
But it’s hard for me to imagine that he ate. 
He had been dead. 
And he walked the earth again.
Don't bother asking, how does that happen? 
It doesn’t.  But it did. 
I picture him doing what I imagine I would do...
just staring. 
Having to be pulled out of himself,
when the others laughed at some mundane joke. 
Unable to walk in both worlds at once. 
Still stumbling sometimes,
as if his legs and feet were still bound. 
Trailing rags behind him,
in his mind if not his body. 
When I was detoxing from chemotherapy,
I would break out into cold sweats.
No one else could smell it on me,
but I could.
Lazarus could still smell the sickness
that killed him.
He could still smell the sourness of death.

Mary is the quiet sister. 
The one who understands without being taught. 
Who always infuriates Martha,
because she leaves Martha all the work. 
Mary gets it right, again.

Mary knows how to respond
to God in her living room. 
She kneels on the floor,
breaks the jar of perfume,
and pours it over Jesus’ feet. 
Just like that. 
She moves without speaking. 
She’s silent, slow, purposeful. 
She does not ask permission. 
She doesn’t explain herself in words. 
She doesn’t need to. 
Jesus understands what Mary is doing. 
He translates for the others: 
“She bought it so that she might keep it for the day of my burial.”

This household knows the smell of death. 
Lazarus had been in the tomb four days. 
Martha had begged Jesus not to roll away the stone.
She knew the smell would overpower them.
Jesus yelled in the face of death,
and Lazarus walked out alive.

The jar of perfume that Mary broke
held about a pound of scented oil.
That's at least a couple of good double-handfuls.
She doesn't anoint his head,
like you would do for a king
or somebody important.
She anoints his feet.
While Jesus is still living,
Mary prepares his body for burial.

She held Jesus' feet,
and she poured the oil over them.
The scent—somewhere between mint and ginseng—
exploded into the house.
The oil ran over Jesus' toes, down his ankles,
all over Mary's sleeves,
and onto the floor.
The house smelled like burial spices,
like grief, and like love,
for a long time.
Mary rubs the oil into Jesus' skin.
She wipes him dry, with her hair.

Judas sets up the point that Jesus is making.
He asks a perfectly legitimate question,
“Why was this money not given to the poor?”
Really, it was not a small amount.
Three hundred denarii would feed a family for a year.

Jesus doesn't say, don't take care of the poor.
He says only, not right now.
He says, Mary knows what you're not seeing.
Let her care for me.
He knows the law full well, and he honors God in his response.
He's quoting Deuteronomy 15:11.
The full text of the verse he alludes to is this:

“Since there will never cease to be some in need on the earth, I therefore command you, Open your heart to the poor and needy neighbor in your land.”

He's saying, While I am here in front of you, love me.
Focus first on the love that drives you,
that gives you life,
that is the reason for everything you do.
When I am gone,
you will be able to love me
by loving the poor, the homeless, and the needy.

Love extravagantly. 
Love with all you are.
The poor you always have with you—
their faces are here with us, on these walls. 
We have sheltered Carol and Barbara. 
I’ve heard stories of some of the others. 
Love these people whose portraits you see. 

Family Promise starts tonight. 
Go see if there are still times you can sign up. 
Cook dinner for our guests. 
Play games with the kids. 
Help them with their homework. 
Stay the night.

Jesus doesn't literally knock on our door
and sit at our dinner table.
We cannot serve him directly in the way that Mary did. 
But we can do what he commanded us to do. 
We can love one another, as God has loved us.
The presence of Christ lives in everyone. 
Love the people who show you to yourself. 

We have enough love. 
God has broken that jar, over us,
and given us each jars to break.
It's running over us right now,
in our hair, soaked in our skin,
dripping onto the floor.
Like Mary, pour it out without counting the cost.
Give it away.