Barefoot and Laughing

In Loving Remembrance - Kirstin's Memorial Service

2011-08-27T18:39:00.000-07:00

On July 30, 2011, family and friends of Kirstin Paisley gathered together at Trinity Cathedral in Sacramento, California, to remember the gift she was in their lives. This gathering was a time for remembering, celebrating, loving, joking and sharing.

With many, many thanks to videographer Sean McConnell, who persevered despite

his own family issues,
technical difficulties that made him edit the whole thing not only once, but twice,
and a workload that, as far as I can tell, requires at least 300 hours a week.

Here is the gorgeous two-part video that intertwines Kirstin's July 30, 2011 memorial service, with the tributes that were offered during the reception afterwards, and photos of her life.

Join us in remembering...

View or download the full worship bulletin here: http://www.worldinprayer.org/kp-servicebulletin.pdf

Part 1:
Remembering Kirstin: Part One from Sean McConnell on Vimeo.

Part 2:
Remembering Kirstin: Part Two from Sean McConnell on Vimeo.

Kirstin had wanted it to be a glorious celebration, and it was. It was also very much hers. She had chosen many of the prayers and hymns ahead of time; it was my honor to be able to weave it all together.

A year ago, shortly after she learned that the cancer had come back full force, I asked her what she would most like to do, if she knew she only had a few months left to live. She started crying, and said, "To be ordained a priest, and be able to celebrate the Eucharist."

I made, and gave her, a priest's stole. A promissory note, that even if she were never ordained in this life, she would always - always - be a priest in the next. She never lived long enough to make it to ordination. But the last few times friends came to celebrate communion with us at home, she wore it, with the blessing and full approval of those priest friends. At her Memorial Service, celebrant Molly Haws wore it, in her honor. You'll see her wearing it, in the videos.

Kirstin wanted to be inurned in Trinity Cathedral's columbarium, where she could be present every time Eucharist was celebrated, and she was. She also wanted some of her ashes to nourish the earth - and they will: at the base of orchards, forests and favorite trees in the U.K., Germany, Vermont, and California, in the mountains of the state of Washington, and the ocean off the California Coast.

She wanted representatives from all of her communities to be able to serve in some way at the Memorial, and they did. The clergy, readers, ushers, oblation bearers, choir members, and those who accompanied the ashes to the columbarium were drawn from St. Aidan's (San Francisco, CA), St. John's (Lodi, CA), Trinity Cathedral (Sacramento, CA), The Bishop's Ranch (Healdsburg, CA), The Night Ministry (San Francisco), Church Divinity School of the Pacific (Berkeley, CA), Safe Ground (Sacramento), Loaves & Fishes (Sacramento); friends from Olympia, WA; her parents from East Wenatchee, WA, and aunt and uncle from Tennessee. And also from her online community: several people who knew her online, but had never met her in person were able to be present.

She wanted the reception afterwards to be fun, with music and laughter. There was a band - which included several people who didn't regularly play together as a band. I asked them what they wanted to call the group, and the answer came back, "Kirstin's Bluegrass Band." I added the word "Incomparable" to the name, because they were.

She wanted great food - lots of it, with enough left over to be shared with agencies that serve the homeless. And there was.

Kirstin also wanted us to have something to remember her by, something to help us know how much she took pleasure in baking, in gardens, in feeding others. And in the center of all the tables at the reception were rosemary plants and a rosemary bread recipe to take home. The recipe is here: http://www.worldinprayer.org/rosemarybread.pdf

At the very end of the reception, as people were leaving and we were starting to clean up, Kirstin's Incomparable Bluegrass Band played "When the Angels Carry Me Home." (If you don't know the song, you can hear a different band playing it here: http://www.youtube.com/watch?v=hzz-ZihixwI)

"...No more sorrow, no more pain...when the angels carry me home."

Kirstin, you are home now.
And we will always love you very, very much.

(Posted by Andee 8-27-2011)

Kirstin’s Memorial will be July 30, 2011 (and yes, your help is needed!)

2011-07-09T19:09:00.000-07:00

A celebration of Kirstin Paisley’s life,

including Communion open to all,

committal of ashes,

and a grand feast afterward,

will be held at 11 a.m. on Saturday, July 30, 2011,

at Trinity Episcopal Cathedral in Sacramento, CA.

The service will be video-recorded, and shared online via her blog, later that day (thanks, Sean McConnell). Plans are in the works to make the online service interactive, too.

She wanted as many people as possible to be able to participate in the Trinity service – not only her close friends, but representatives of the many different communities her life touched. We’ll need acolytes, torch bearers, crucifers, readers, ushers, communion bread-bakers; lay and ordained ministers to distribute the bread and wine during Communion; flowers purchased and arranged for the altar; singers who can show up an hour earlier, rehearse briefly, then be part of the choir. Oh – and at least one of the hymns needs drum accompaniment. If one of these calls to you, let me know!

Treasuring the gift of Christ in Communion as she did, and hoping until nearly the end that one day she would be ordained priest and able to be the celebrant herself, Kirstin directed that her ashes be placed in Trinity’s columbarium, so she could be present every time Communion was celebrated. But she also wanted a bit of her to remain in places that had been so special to her – a beach near Santa Cruz, The Bishop’s Ranch, the Washington mountains, and nourishing a tree in an orchard somewhere (your orchard, perhaps?). And – shhh, don’t tell the authorities – but so it shall be.

For the feast after the service, she wanted real food (not just desserts and finger food), the best we can provide. Home-made bread (she’d gotten really good at making artisanal breads herself during the last year). Main dishes and salads and desserts that would make the best restaurant proud. With lots of leftovers to share with the homeless through Loaves & Fishes and Safe Ground.

Many churches have a guild that provides or organizes meals after funerals; I understand that Trinity does not (Trinity folk – is this your chance to start this ministry?). Other times, the memorial feast is catered – but that’s not only very expensive, it’s also really hard to arrange when we don’t know if there will be 50 or 500 people at the service. Which leaves us with potluck, or well-planned spaghetti feed or barbeque, or a combination where the main course is prepared by a corps of wonderful volunteers while salads and desserts are potluck. Maybe one of you can take on the responsibility of organizing this? And if you’re willing to bring food, let me know, and I’ll link you up with whoever takes on the role of coordinating the feast.

She also dreamed of having a live “old-time” fiddler or bluegrass band at the feast. Are you one, or do you know of one, or are you willing to cover the cost of the musicians once we find them?

Speaking of cost – yes, contributions towards the cost of the columbarium space and service will be welcome; it looks like this is going to cost a couple of thousand dollars more than I was estimating, even without catering or musician fees. Memorial donations can also be made to Trinity Cathedral’s Outreach Fund, or to the Melanoma Research Foundation. Any contributions toward the cost of the memorial service that are not needed for that purpose will be donated to those agencies.

Several months before her death, and indeed well before we knew the cancer was terminal, Kirstin took some rosemary clippings from a neighboring shrub and started to try to root them. For months (and months) they just sat in their pots, not dying, but not doing anything either. Two weeks before her death, they started growing. She got to see, and celebrate, as they reached towards the sky.

Rosemary, in medieval herb lore, was called the herb of remembrance. And so I’m wondering if some of you would be willing to start some rosemary plants in small pots, enough to give one to each person who comes to the memorial, wrapped in a pretty ribbon and with Kirstin’s favorite rosemary bread recipe tied on…as symbol, and faith, and promise, that what God began in Kirstin, and in each of us through knowing Kirstin, that the love that we shared, will indeed take root and grow and live again.

Yours in faith,
Andee

A new beginning (posted by Andee)

2011-07-01T22:44:00.000-07:00

Kirstin died a few minutes before 8 p.m. tonight. After a day of many of us singing to her, she is now singing with the angels. Rest in peace, my little one.
--Andee

Turning Point (posted by Andee)

2011-06-30T15:41:00.000-07:00

Over last weekend, Kirstin and I had many difficult, and wonderful, conversations. About her eagerness to spend several hours with each of her friends before the end, vs. the reality that she probably only had a week or two of "good time" left. About not wanting to die at all, and yet being ready to let go. About the fact that as her breathing got worse, she would eventually have to choose between taking enough drugs to be comfortable, and being able to be awake and alert. About her love for each of us, and for God, and her trust in the next life, even as she felt all the terror of letting go of this one.

By Tuesday morning, she was struggling with every breath. And when the Hospice nurse came, she made the choice to start taking morphine to ease her breathing, even though the combination of morphine and drugs to control its side effects would knock her out almost all the time, and leave her loopy and drugged during the moments when she was awake. It was not a choice she made lightly; she had so hoped to have more time with us, and did not expect this to happen just hours after we had talked about the possibility.

Yesterday, a group gathered here to celebrate the Eucharist with her, and to anoint her with the wonderful words written by her friend Margaret Watson:

"Thank God for your eyes which saw the world in Love; for your ears which heard the Word in Love; for your mouth which spoke truth in Love; for your shoulders which bore the burdens of the unloved for Love's sake; for your hands which worked unhesitatingly in Love; for your feet which walked under bridges and among the poor and suffering in Love; for your heart undone and remade without fear, for Love's sake; in the Name of the One whose Name is unutterable except in Love incarnate... the Name we all share through the imagination and work of the Spirit, in concert with the One who spoke Love in the very beginning..."

She woke to greet each person, to smile, to hold her hand over her heart in thanksgiving as I relayed message after message of love to her.

Since then, the changes have continued to accelerate, and the Hospice staff say that she may die sometime today, definitely not more than a day or two.

Another friend, Carol Bower Foote, wrote a fairytale for her, a story in which Kirstin had always secretly wanted to be a butterfly. Holding up the longing to God, God replied, "Your choice." And, in the end, when her soul got weary, and her shoes almost too heavy to kick off into the grass, she chose...

"She surrendered into the rich, silken luxury of this pool of color and let herself sink. From deep within the sea of shifting hues, she felt herself begin to rise, floating and becoming lighter as she rose. She broke the surface with barely a ripple, nearly blinded by the bright summer light. Then, to her amazement, lighter than air, she continued to rise, above the grasses, the wildflowers, the trees. She became aware of herself at the center of an almost sacred rhythm, surrounded by the brilliant, translucent color of butterfly wings. She was whole! She was herself! She was totally free!

She felt as if her wings filled the sky…but gossamer light…the breeze teasing and tickling her bare toes. Suddenly, the sky was filled with other colorful creatures inviting her to dance. From within the joy which overwhelmed her, she felt rising from deep within her being, the unmistakeable light bell-like peel of laughter."

The time of turning is at hand. Join with me in praying her into Joy.
--Andee Zetterbaum

Trying things on

2011-06-24T17:27:00.000-07:00

I started this last night, writing through the sound of an oxygen compressor. It was exceptionally hard to concentrate, but I wanted to stay with the thought. Writing remains easier than speaking, in any event. I have, many times, blanked on a word in the middle of what was intended to be a fluently spoken sentence. Not hard words either—last night it was “frozen mac and cheese.” (Incidentally, we had a much better dinner.)

I’ve had company steadily all week. My friend Kat came from Arizona on Monday night, and stayed until yesterday evening. Another friend came for a morning while she was here. As Kat left, another friend visited before Andee got home. (Heavens to Betsy, why keep to an alias? All of you know who she is.) Andrea and I had about two hours together. She rubbed my back with the goo that Margaret gave me the recipe to, and we talked. (I can’t be left alone longer than a quick errand run, for my physical safety.)

I’ve had lots of people to think and feel things through with. It’s been good for all of us. I said something last night—can’t remember why—about how I wouldn’t do anything differently, over the last three years of my life. I think I’ve lived as openly, as consciously, and with as much intention as I could have. I’ve done a lot of things I’ve loved. But before that? If you ask me for regrets, oh hell yes. I was a scared kid, frightened of everything, decades beyond where fear remotely served me. I didn’t try things, mostly because I think I was afraid of disapproval. When I threw that off—the catalyst was my first diagnosis—my world opened up. I found the call to homeless ministry that I thought I would do for life.

Andrea and I were seminary friends. She is one in the category of friends for life. She was rubbing my back (where the bulk of my large soft-tissue tumors are), and I was, when not completely blissing out into it, talking about call. If I could go back to my normal life, would I pick up the same call again? I know I’d explore hospital chaplaincy on the way. Which would draw me closest? Would I end up engaged in something I’ve never yet imagined? Would I do something completely random, akin to selling lizards on the street?

I still love my homeless guys. So I don’t know. But the point is, if I had time to try other things, what would I do? I don’t have time to pick something and perfect it. I can’t need that, or allow myself even to want it intensely. It won’t be mine. I’m making space, I think, to think of myself as a person who tries things on, even if I spend the bulk of my time on the bed or in the dining room, and never leave the house. There’s no reason I can’t define myself any way I like, even now. And dying is certainly “trying something new.”

I always want to live with intention. For the last three years, I have. I intend to die that way too: not at my own hand, but in the way that brings the most integrity to the openness in which I have wanted to live.

It almost makes me laugh. What would I try, now? A new recipe. And I’m not a cook, but I’ve enjoyed it with friends. The last time we made granola, I read the recipe (which I almost have memorized) to Andee, and she did everything but the mixing and pouring because it hurts her hands. It was fun. I thought, what could I try? My mind brushed over “a new spiritual practice.” But I’m not the “pray in ten minutes a day” kind of person. Writing is the practice I’ve committed to, over the long term of my entire life. I don’t blog daily or weekly, but as long as I’m here, you will know that I am. Sharing myself in this way has become bedrock to me. I’m worried that I may have mets in my upper right arm, because I’m having pain there. I have an appointment for radiation on Tuesday, which if it works as well as on my knee, will control the pain. I want to communicate for as long as “I” can exist here.

I tried daily prayer. I did it for... maybe a month? The length of my brain radiation, and change. Yet I know that God is with me. It would be pretentious to say that my relationship with God is more imaginative than a daily discipline. I get that one has to stick with it to stay close. But rigid disciplines don’t work for me at all, and they never have. (If I could do Eucharist daily, would I? Damn near. But that’s more than praying words; it’s holy food.)

Andee and I love our friends and want the company. But when they leave, we look at each other, sigh, and re-collect ourselves. I realized yesterday, Yervoy is an every-three-week infusion. I could, if I wanted to, get back on the bus. I mentioned that last night, cautioning first that I didn’t want to anyway. She still looked horrified. We had the moment with the ER doc that we needed. We made the choice. Rather, we allowed her eyes to confirm it in our own. We know it was right. I’ve thought, I want time to try things. Am I being asked to try more treatments? Could I do more, if I tried against even this to stay here? But there’s very little doubt in me. I know the answer is, choose a gentle death. Go. You will be embraced, by that which loves you more than you’ve dared to imagine.

For me, my relationship with God has felt like that—not cerebral, but imaginative. My heart has caught on eventually. It’s been alarming to think of that embrace being as emotionally enveloping as it also must be. But I need to stop fighting myself, to turn. My physical breathing is constricted, but I still have the capacity, and workarounds to make it less uncomfortable. It isn’t time to die yet. But it is time, to begin giving over. I am so grateful for the people who walk with me most closely in that, and who teach me that even if I have scary times contemplating all of this, God is already holding me that closely, has always been, and will always be. I’m not going into the arms of a stranger. I’m held in the arms of the one who created me exactly as I am.

Oh, and if you’re on Facebook? Realize, when you tag me, that you’re talking about me in the third person. And if you comment on a tagged post, I will see it. If you know me, then you already know me, and you treat me as a friend. “Hi and I love yous” are more than fine; I love seeing them. If you comment, and you call me “beautiful and tragic,” I am not. I’m a human being learning how to die. I’m putting way more pressure on my housemate than I’d like to. (She has to not only coordinate who comes to visit and when, but get all my daily meds together before she leaves for work—and get up at night when I need to use the bathroom. And yes, she’s even gracious about it at 3 and 4 and 5 a.m.) There is love and courage in us and in our circle. There’s absolutely nothing to romance about it. We’re going about this as best as we possibly can. And we’re very real human beings.

Thank you for the notes and gifts, blog comments and Facebook drive-bys. Know that what is not reciprocated in print, is very much appreciated in our hearts. We’re touched by all you’re doing, and we love all of you.

Shoutout to St. Aidan’s people: I want to make sure the desire came across clearly. Please let D know if you would make the trip to see me—but it was never intended as a group thing. I want you, and we want to invite you—in ones, twos, and at max threes, and not a steady stream. I only asked her to see who would drive the two hours east—it was never intended as a caravan. I remember Rob’s vigil, though I was at the Ranch and didn’t come—and that’s not what I’m asking for; just love when you can give it. I don’t have the endurance for more. Thank you!

The right decision...

2011-06-16T12:01:00.000-07:00

at the right time.

A and I went to the ER on Monday because I was breathing heavily; we were afraid the increasing difficulty might be due to a common, and dangerous, side-effect of Yervoy. They ran lots of tests for breathing (which of course was better while we were there), and found nothing. They also gave IV morphine for knee pain. (I have a pathologically fractured left tibia—meaning that mets are weakening my bones. I was also using an inadequate brace.) The morphine had worn off by the time we got home, but no one had taken any new films of the injury.

So on Tuesday morning, I was back in pain again and we didn’t have any real solutions. A called 911 for my labored breathing and increased pain in my left knee. I’d awakened that morning on the floor, rolling around, trying to get up and go to the bathroom by myself. I clearly wasn’t fully awake; I was screaming in pain, and the brace I was using wouldn’t protect me anymore. (I normally summon her, either by calling out or with the bicycle horn, when I need help getting to the bathroom in the night.) I was stoned on legal painkillers, but not stoned enough. A called the local ambulance, which could have taken me to the local hospital that contracts with Kaiser. But the drivers knew the ER staff had never seen what I had; I remember one saying I would “scare them.” (Not with my degree of disorientation; this is Stockton, CA. But my level of disease would have been a new challenge to them.) So the ambulance drivers helped get me into her car, and she drove me to the Kaiser hospital in Sac.

They took blood samples, and new images of my leg—we were insisting on a solution for the pain. They gave me a new, more stable clamshell cast, which I can remove to bathe. What matters most in my memory, and to my present reality, is the conversation with the ER doc. She came to my bed; A was sitting on the other side of me. I had just taken my first infusion of Yervoy the previous Friday. I’d never felt sure of it. I honestly felt more pressured into it by my doctor, than willing to stay in the fight myself. A and I have always been on the same page. I was afraid it wouldn’t work; I was afraid it would only work a little. I’d take baths and watch the tumors grow; I’d hear my own Darth Vader breathing, and feel some ground slip underneath me.

This doctor, God bless her, gave us both permission to admit that. I must have said something about the pain, frustration, and uncertainty I was in. She answered, “How committed are you to chemo?”

A and I looked at each other, and we both teared up. We knew. And it was okay. I looked back at the doctor. I knew the words were mine to say: “Not in our hearts, really.” She, God bless her, cried with us. And she got us connected with a palliative care doctor, who is working with us until he can get us connected with hospice.

This is the care I need. This is the care I finally had the readiness, and the courage, to ask for. I’ve been fighting for three years. That’s enough. Just saying, “I want hospice,” gives me so much peace. I don’t need to fight to the bitter end. I don’t need to be a warrior anymore. I can let go as my body wants to, into as much comfort as possible.

My warrior friends, and my cheerleader friends, will be sad for me. I’m sorry. And 40 does feel shockingly young. I would have loved to have been cured from this, to come back and live my new life with everything I’ve learned. But when I asked to see my most recent PET image, and it looked like a Jackson Pollack print of my upper body, that was enough. I don’t need to stare steel-eyed against all my invaded organs. I already see a breastplate of tumors when I take off my shirt (seriously! Almost like medallions all along my clavicle); feel them just under sea level when I touch my upper arms and legs. I know what’s inside me, and I know how tenacious it is. My oncologist had told me that Yervoy was basically my last, best hope. I could have exploded when the ER doc said she’d asked him what the realistic chances were and he’d agreed, “two months, best guess.” Yeah, they want to give us hope. But hope isn’t bread. And a “hope” that leaves me in misery because I don’t know how or when to let go (it isn’t “giving up”) is misleading. Reaching for the next straw until the offerer’s hand falls empty is not the way to ease into the awareness that you’re dying. And that it’s okay to die. All bodies do.

Are there things I’d have loved to do, and to keep doing? Of course, yes. But it’s time to ease into peaceful letting go. It’s time to pass the work I was doing, on to others—they already had picked up Safe Ground anyway, and there will be others who will celebrate Eucharist on the street, outside, at the river, until homeless people feel welcome in the churches. The ministry of welcoming all people into the kindom of God will constantly expand, until every soul is taken up into it. What I lose by dying soon, is time I love with friends on earth who love me. We will find that, as one friend says, on this side of the river and the other.

I will want visitors. All who want to see me, who know how to contact us, please do. If you don’t know where we are, just ask. (My e-mail address is in my profile; A's is in the previous post. We're both on Facebook.) I don’t have the endurance for long goodbyes, and again I honestly don’t know how much time I have here. Give time if you can; love me and us any way that you can. A and I both know how much you support us. Know that we love you.

We want to keep me at home as long as we can. We won't move me until we need to.

Meanwhile, I’ll write as I can. What I know about my self-expression right now: Expect memory recall that’s alternately not-me fuzzy and freakishly clear, and expect honest emotions. A will write for us both, when and if I can’t. We both appreciate your friendship more than we can say.

Kirstin

Andee and Kirstin need help

2011-05-30T13:23:00.000-07:00

Written by Andee, posted by Kirstin

We have just reached the point where Kirstin can no longer stay alone while I am at work. (This is Andee - the infamous "A," her roommate, writing.)

For those of you who may not be up-to-date with the latest--the pain from the "strained ligament" in her left knee turned out in fact to be from another melanoma metastasis in her left tibia. The various pain meds she has been given, while not helping much with the pain, have made her loopy, nauseous or both. She had been able to hobble from the bed to the bathroom with the aid of a walker, but Friday night, the pain meds made her lose her balance. She caught herself before falling, but simply putting weight on that leg fractured the front of that bone.

I haven't had an uninterrupted night's sleep in weeks, and am exhausted. Although I have some vacation time remaining, I'm trying to save that for the times I need to accompany Kirstin to doctor's appointments. Family leave laws don't apply when you are the primary caregiver to a roommate instead of a close relative.

To all of you who have wondered how you can help: HELP!!!!

We desperately need people who can just quietly be here daytimes on weekdays; having someone here for a few hours on Saturday so I can run errands would also be helpful. If you're local and can come for a day (or even half a day) every week, that would be wonderful. If you're from out of state and can come help out for a few days, or a week or more, that too would be marvelous.

You might need to bring her something from the kitchen when she asks, remember when she is due for more meds, or wheel her the few feet from the bed to bathroom. (The wheelchair is super-lightweight; the only tricky part is negotiating some tight doorways and corners without bumping her injured leg.) And I'll be honest, until we get the pain meds/nausea stuff worked out, there might be an occasion when you have to rinse out the basin. (To give her credit--although I'm sure this isn't something she wants to be known for--Kirstin is the neatest, most odorless vomiter I've ever met!) Between the pain and the anti-pain drugs, she's not up to much socializing. So most of the time, you'll just be occupying yourself in another room, just available in case of need. (There's a computer, wi-fi, a ton of books, and three cats to keep you amused, but no cable TV.)

We hope, and pray, that this is temporary. There is still one more treatment for melanoma to be tried; a very small percentage of those who go through it are helped by it. There is a very great chance (and I'm crying as I write this) that I'm asking you to be prepared to help with end of life care.

Many of our friends have asked if Kirstin needs money. The answer is yes, no, maybe and probably. Neither medical insurance nor hospice covers this kind of in-home care - at most they provide an aide a few hours a week. If we can't find enough friends who can help and need to hire aides, or if the friends who have time are unemployed and can only come if we cover their travel and lodging expenses, then yes, she is going to need lots of money. If you can help cover some of these expenses (and thank you, Lisa and Neil for offering air miles!), or contribute towards other medical costs not covered by insurance, please, please write to Andee.

(For that matter, if you're in the Stockton/Lodi area, do you have a guest room that you'd be willing to make available to friends who are traveling from out of state to help us? Or if you're going to be out of town for part of the next few months, could they borrow your house, if needed? My house is tiny - Kirstin's in the bedroom, I'm sleeping in the living room.)

Other ways you can help--

Handyman skills: I really need to get my front sprinkler systems working again, because I don't have time while taking care of Kirstin to water by hand. (I think the valves just got clogged with dirt when the city repaired the sidewalk a few months ago. At any rate, I hope that's all it is.) We may also have to remove a couple of inside doors and the shower doors temporarily to make it easier for her to move from room to room, and get into the bathtub. If/when we have to bring in a hospital bed, I'll need to put up curtains in the living room, and will need a place to store some furniture (and strong arms/backs to help move it).

Gardening: This will make the second summer in a row that melanoma has taken precedence over gardening. The weeds (and unwanted zillions of baby oak trees) aren't tall - but they are plentiful. If that's your thing, have at it!

And of course prayers, love, emails, tears, hugs. What's sustaining us through this is knowing how many of you are with us. I love you all.

Andee

All this...

2011-05-25T22:47:00.000-07:00

and bone mets too. Now I know why my knee hurts.

I e-mailed my primary yesterday, asking for pain relief. She wrote back asking where the knee hurt. I told her, and she ordered an X-ray. (Now, she could have done this when she first diagnosed the strained ligament—just to see what else could be causing pain—but alas.)

A and I were in the car on the way to UCSF, when her e-mail came in. She told me what it was, and to stay completely off the leg.

Thank goodness for smartphones, because I was able to discuss it with Dr. Wonderful at UCSF. Without seeing films, he recommended radiation. I’ve already irradiated the most important thing to me, so I know I can do this. It sounds positively easy.

[Overall treatment plan with them: confirming that my brain mets are gamma-knifeable (so far they say they are!), and starting me on ipi soon. I have a PET and a brain MRI (and now one of my knee) next week.]

My primary sent another e-mail, saying that the orthopedist she spoke to recommended a knee replacement. I got freaked because of the healing time, and the level of care I would need. A works full time, and needs to. The pain from knee replacements is legendary; I don’t want to be miserable for weeks or months if I’m going to die anyway. I really, really want to walk without pain again.

I e-mailed Dr. Wonderful when I got home. He added the knee MRI to the scans I’m already getting, and said he wouldn’t jump to replacement. Which made me feel a whole lot better. He is... cavalier but not careless. Willing to go out on all kinds of limbs—but not willing to inflict pointless suffering. A compassionate mad scientist. Contagiously hopeful. I trust him. And I just plain don’t want to be mobility-disabled, in excruciating pain, and miserable, unless and until I need to. It certainly wouldn’t be curative. If I were just old and worn out, that would be one thing. I don’t know if I’d live past the healing.

In other news, I took a 2 ½ hour nap when we got home—for the first time in forever. After throwing up Vicodin intermittently all day. So now I need another form of pain relief... but I feel both groggy and rested, which is oddly nice.

And I have company tomorrow. Life, as it is, goes on.

Was I this calm earlier? Hell no. I got really quiet and was crying in the car. I feel really bad for what I’ve done to my body—demanding that my leg do things it couldn’t. I’m sad that the cancer has spread. But I watch myself sprout new soft-tissue tumors all the time. And after invading my brain, it’s honestly hard to see how it can hurt me. I miss walking, and I don’t know whether I’ll get to do it again. I’m in physical pain. But psychologically and spiritually? After awhile, it’s just like, “fuck it.” I can deal with this too.

Damn.

2011-05-23T19:45:00.000-07:00

I’m not a mutant. The doctor at UCSF called about an hour ago. Not quite sure what happens next. UCSF will take my scans to their neurologists on Thursday, and they’ll say whether or not I’m eligible for gamma-knife. If I am, we do it, and cytotoxic chemo. (I don’t expect to be eligible; I’ve been told I have too many tumors.) If I’m not, he says ipiluminab is the best bet. I can get that through Kaiser or UCSF. I'd rather have him keep treating me, so that's what I think we’ll do. (My MediCal covers it. My doctor at Kaiser looks depressed every time he sees me. This one still has enthusiasm, and knows so much more of the current research.)

If I’d had the mutation, there was a study done that said the drug they’re testing had an effect on 10 out of 10 patients with brain mets. That’s why this is so crushing. Ipi has a low response rate, but there have been documented effects against brain mets. It also can be very harmful—but some say it’s easier than interferon, which I tolerated for a year with a headache and fatigue. It’s not what I want to do, but I’ll probably have to. After that... it's kind of the end of the line.

The doctor was really concerned about response time, and what I have time to try. That tells me all I need to know.

How am I? Resigned. Sad. Not scared at all; way out beyond fear. There’s a little bit of hope seeping sideways, but it’s a rope thrown in darkness, not a solution found.

A held me for an hour while I cried. That’s how I know I still want to live.

Frustrated

2011-05-22T19:43:00.000-07:00

No, I don’t have biopsy results yet. (That would have been the obvious conclusion.)

I go stretches between blogging all the time, now. Either there isn’t much happening, or I don’t have the energy to write. I wouldn’t be writing now, except that A just hugged me, and when I reached to hug her back (I was propped up in bed), I brushed my neck and felt two new tumors.

I’m a fucking tumor tree. I don’t go more than a couple of days without finding one. These are the first that will be visible with my clothes on. (I found one on my inner thigh, yesterday. That’ll be comfortable. [/frustrated sarcasm]) I never used to hate taking showers. Now, not only are they painful (I have to stand on an injured knee), but I have to touch my body. I have to wash these things that are doing their best to overrun me.

I haven't had a PET since February, so I don't know how the whole picture has changed. (My oncologist at Kaiser was monitoring me with chest X-rays and visual exams of my soft-tissue tumors.) I don’t have bone fractures. If it’s in my liver, I don’t know it—I’m not yellow. I get queasy when I’m hungry or tired, and I eat less than I used to, but I still do eat healthily. Radiation may have temporarily arrested it in my brain; that never lasts more than a few months. It’s running rampant through my soft tissue. I wonder what that means for my lungs?

I have follow-up PET and MRI scans on the 31st. I don’t know if that’s contingent on my biopsy results or not. (If I don’t have the mutation, I don’t know if they’ll scan me.) They took the tissue a week and a half ago; I was supposed to find out Friday if I have the BRAF mutation necessary to be included in this trial. I love UCSF; the doctor is both brilliant, and wonderful with patients. He spent two hours with us, asking and answering questions. But I really wish I could find out faster. (He was hopeful because of a couple of factors, my age being one of them.)

Coughing and poor sleep steal my energy, but other than that I generally don’t feel physically bad. It’s just that my hope is getting tired. (I take three separate sedatives to sleep through the night. I wake up in pain from my knee; this is even with aggressively taking Aleve. I’m going to have to talk to my doctor and my PT about pain control. I really miss walking. I want to walk without pain again, before my brain blows up.) We borrowed a walker from A’s church, because my hiking stick just wasn’t doing it. It hurts too much to bear weight on that leg.

So I’m exhausted and in pain, and watching tumors grow on me. I have less energy. But I still feel like me inside. I sort of feel faded, like I’ve been washed too many times. There are rare times when I’m rested and coughing less, and the old me comes back. Some of it’s emotional. The doctor at UCSF cautioned me not to drive. (If we get proof that the tumors are stable, or eventually shrinking, that will be lifted.) A and I make the most of our weekends. But I don’t get to go anywhere during the week anymore. If I have a medical appointment, we find someone to take me. I can’t just run to Trader Joe’s for dinner ingredients. The last class at CDSP that I still have friends in graduated Friday, and I couldn’t go be with them. I didn’t try that hard to get a ride, because I knew the day would be too long for me anyway.

I don’t really have enough to do, or enough energy to do it if I did. I’m going to need to work on that. Not sure how, but for my mental health I’ll need to.

Where is God in all this? Shadows I sense in the trees that I walk through. By that I mean with me, but not overwhelming me. Present underneath the surface, bubbling up when I need to see God. A friend prayed for a cure for me, and it was the first time anyone had done that and not freaked me out. We’ve had these conversations. I trust her, and I trust her God. I let myself drink it in. It was right. A and I went to see Talisman last night. I was in tears at the second song, and could not have said why. We had a conversation today at the car wash, where I realized that I’m more connected than I think I am—and talking about faith and grace and what God is and isn’t, is one of the ways I can feel my own rootedness. Writing also takes me there. (Though even thinking about the in-depth processing I used to do here, fluently, all the time, exhausts me now.)

Here’s the song. The music starts at 2:06. It would have moved me under any circumstances, but I was literally streaming tears. I never used to do that. It’s not uncommon now. I’m closer to... something, than I ever used to be.

I know that God is everywhere. I’ve stopped saying Morning Prayer, except occasionally. (One reason is that I can’t even read it in a whisper anymore, without coughing all the way through. Another: the readings themselves weren’t helping or feeding me.) A friend made Greek Orthodox prayer beads for me. I went to my resources, looking for an alternative to the Jesus prayer traditionally said with those, and found something I’d forgotten about—the prayers for use by the sick, in our Enriching our Worship 2 supplement to the BCP. I can say them honestly; they express things I actually feel. So I could try that for awhile.

One practice will lead to another. I need to trust that I’ll find my way home.

Back on the seesaw

2011-05-08T07:09:00.000-07:00

The fulcrum may be flatter, but here we still are.

I need to blog. I don’t want to. There’s just too much to process. My speech is clear and appropriate, as is my writing when I do it. But I worry sometimes; my brain feels like a sea sponge. I'm always surprised when the writing process still feels like home.

I did go to St. Gregory’s for Easter Vigil, and it was wonderful. (I did myself in, though, walking-wise, by dancing too much. More on that in a minute.) St. Aidan’s on Easter morning was also wonderful. I hadn’t told anyone to expect me, because I didn’t know if I’d have the energy to go. It was so good to see people. I went to the Ranch from there, and stayed until Friday. I couldn’t really hike, because I strained a ligament in my knee sometime in March, coming out of the shower coughing and gagging. I went down as if to throw up (it’s been a long time since I’ve eaten before showering), and hit my knee too hard. Probably more than once. I only last week went to PT for it, and it’s beginning to improve. But I walk everywhere with a hiking stick, because my knee is unstable and any little wobble causes pain. Braces help, but not that much.

But the people there were wonderful, and that’s really why I went. It’s my other home. The staff has been extended family for a long time. Threshold Choir was there that week. I’ve worked their retreats before. It was both good and hard to be there with them. They sing for people while they’re dying. They sang for me, two evenings in the chapel. The first time was pure gift, and I blissed out on it. The second night, they tried to make me cry, because the director told them that I’d tried not to before. It worked. (I’m still a little ambivalent about that. Do tears help? Yes. But it’s up to me to let myself have them, when I want to and feel safe to. I told one of them the next morning, that I felt a little bit played with. She understood.)

I missed most of the Tuesday I was up there, because I had to come back to Sac for my follow-up MRI. I came home on Friday, went to church in Fremont Sunday, and to the Rosicrucian Museum in San Jose afterwards. (It was weird for both A and me to be there among all those mummies, with me rather clearly headed in their direction.)

While I was gone, A went nuts researching clinical trials. Good thing, because my doctor told me on Tuesday (a week after the MRI) that my brain mets, along with everything else) are growing.

That only ends one way. You die. And it’s easy to believe it, because my cough has been hideous. I haven’t had any energy. I literally drag myself everywhere. (I saw my last chest X-ray. My lungs are full of clouds.) A got us an appointment with a doctor at UCSF who’s running a clinical trial for a drug that actually works, consistently, on brain mets. We’re seeing him Wednesday. The catch is that I have to have the BRAF mutation. We’ve been asking Kaiser to test me for that since July. (I have a hole in me now from where they biopsied me on Friday. But we don’t have any faith that they’ll do the test.) UCSF will test me when we go there. A and I both love this doctor; A feels that he’ll be able to help even if I don’t have the mutation. I’m rationing hope.

So. I’m wearing a Lifeline button right now. (I hate the thing, but it’s for security.) I've had a Medic Alert bracelet for weeks. Every time I get a headache, I just assume it’s water pressure. I’m planning to drastically reduce driving after I get home from church today, in advance of anything actually happening. (A can’t take me; she’s with her mom in Davis for Mother’s Day weekend.) For the first time in decades, I feel nervous being home alone overnight. We got me a disabled parking placard; partly for my leg and partly in advance of disease progression. I spent last Wednesday with a friend; we get together every week or two, whenever I ask, and soak up time together. This time we talked about intentional dying. And... we might have found the drug that will give me my life back. If I have the mutation. There’s about a 50/50 chance I will.

I’m hardly daring to hope. And one of the things that keeps going through my head is, “What would I do with my life if I had it?” I want to live. I confirmed that when I walked out of my biopsy at Kaiser, checked my e-mail on my phone, found the exchange that A forwarded to me between her and the doctor at UCSF, and was suddenly and uncontrollably crying. I want this. There is so much I can do, if I get it. And I’m also scared. I would need so much support, just to get on any kind of economic feet. (One of my fears is that a loss of or lapse in health insurance would mean certain death. A won’t let that happen, as long as she can prevent it.) I was sure before the cancer came back, that I wanted to be a priest on the streets. Now, that’s one of a garden of possibilities. Whom do I love most, and how do I want to be with/serve them? I’m toying with the idea of hospital chaplaincy—I certainly know it from a patient’s perspective—but I haven’t even done CPE. (I was sick all the summers I might have.)

What would I do if I had a life, and time? What would I do if I had energy, and could freely breathe? What would I do if my brain were fully mine? What would I do if I could manage my melanoma like any other chronic disease, taking a drug for as long as it worked (in this case, about seven months) and then jumping to the next invention? What would I do if death weren’t lurking behind the next tree?

That I might get to find out, both exhilarates and frightens me. Even as death itself holds much less fear. You learn to adapt quickly to medical realities. “Your mets are growing.” “Oh. Well, crap.” When I stopped crying and wanting to cry, I was no longer so scared to let go of being here. It was almost weird, how quickly God was not so much the stranger.

I can’t commit to living with my full heart, and I can’t turn my full being to dying with intention. I have one foot in each possibility. The choice won’t be mine; it will be dictated by biopsy results. I can do either. The waiting is what’s hard.

I need to stop and thank people for writing me, when I so rarely write back. (John Kater, I’m looking at you.) Thank you for being in this with me. Thank you for encouraging me, praying for me, loving me through everything. Thank you for telling your stories. Thank you just for being here.

I mean to write more often than I do. It’s a lack of energy that keeps me from it, and also sometimes the speed at which circumstances change. Sometimes I wish I didn’t have this commitment. But all of you sustain me.

If I disappear, don’t worry. A will write for me, if and when I can’t do it anymore.

Love to all.

Three years ago

2011-04-25T21:11:00.000-07:00

I heard the word “melanoma” for the first time, from my dermatologist over the phone on a Friday afternoon. The sky darkened, the earth quaked... and three years later, here I am.

Now, on this Easter Monday, my words clatter together until they fall silent and I give up. I’m still worn out (in the best way) from Easter Vigil. I’m at the Ranch; everything's still green, and the flowers are out everywhere. A friend came up to visit this morning; we talked until we just got quiet and looked out at everything, sitting with time, presence, love, and beauty. I have to go to Sac tomorrow to get an MRI, to find out whether my brain mets are stable. If they are, I’ll be eligible for clinical trials. That’s the standard of care, out here on the precipice. I’ll be back here by dinner, and probably find out the results on Wednesday. I feel like I’m staring transfixed at the sunrise, kicking rocks off the cliff with one absent-minded foot.

I give you three poems. This one has been suggested to me at least twice this week:

Wendell Berry, “Manifesto: The Mad Farmer Liberation Front”

Love the quick profit, the annual raise,
vacation with pay. Want more
of everything ready-made. Be afraid
to know your neighbors and to die.
And you will have a window in your head.
Not even your future will be a mystery
any more. Your mind will be punched in a card
and shut away in a little drawer.
When they want you to buy something
they will call you. When they want you
to die for profit they will let you know.

So, friends, every day do something
that won't compute. Love the Lord.
Love the world. Work for nothing.
Take all that you have and be poor.
Love someone who does not deserve it.
Denounce the government and embrace
the flag. Hope to live in that free
republic for which it stands.
Give your approval to all you cannot
understand. Praise ignorance, for what man
has not encountered he has not destroyed.

Ask the questions that have no answers.
Invest in the millenium. Plant sequoias.
Say that your main crop is the forest
that you did not plant,
that you will not live to harvest.
Say that the leaves are harvested
when they have rotted into the mold.
Call that profit. Prophesy such returns.

Put your faith in the two inches of humus
that will build under the trees
every thousand years.
Listen to carrion - put your ear
close, and hear the faint chattering
of the songs that are to come.
Expect the end of the world. Laugh.
Laughter is immeasurable. Be joyful
though you have considered all the facts.
So long as women do not go cheap
for power, please women more than men.
Ask yourself: Will this satisfy
a woman satisfied to bear a child?
Will this disturb the sleep
of a woman near to giving birth?

Go with your love to the fields.
Lie down in the shade. Rest your head
in her lap. Swear allegiance
to what is nighest your thoughts.
As soon as the generals and the politicos
can predict the motions of your mind,
lose it. Leave it as a sign
to mark the false trail, the way
you didn't go. Be like the fox
who makes more tracks than necessary,
some in the wrong direction.
Practice resurrection.

*****
A long-time favorite of mine, from before I had any idea what it meant:

e.e. cummings, "i thank You God for most this amazing"

i thank You God for most this amazing
day:for the leaping greenly spirits of trees
and a blue true dream of sky; and for everything
which is natural which is infinite which is yes

(i who have died am alive again today,
and this is the sun's birthday; this is the birth
day of life and of love and wings: and of the gay
great happening illimitably earth)

how should tasting touching hearing seeing
breathing any—lifted from the no
of all nothing—human merely being
doubt unimaginable You?

(now the ears of my ears awake and
now the eyes of my eyes are opened)

*****
And this will be the psalm at my memorial:

The Rev. Virginia Going, “Today”

Let me live today.
Let me be open to the miracle of this day.
Let me breathe the best of today.
Let me not miss the heart of today.
Let me find the gift of today,
hidden like a jewel in rubble of care, duty, and detail.

Let me pause to hear
the steady beat of the heart of God—
hoping, aching, sorrowing, expectant, patient,
despairing heart of God.

Listen, listen.
Do you hear it?
Ever so faint but steady, steady,
rhythmic organ, strong muscle,
thumping, beating, pumping, sustaining, encompassing,
wildly dancing heart of God.

Let me live this day, aware, open, listening, breathing, alive.

Fear, hope, sickness, God, and me

2011-04-21T21:41:00.000-07:00

Or, a monster-long catch-up:

I’m coming out of an inward time. A horrible cough that turned out to be a reaction to Temodar (that’s better, but it’s spring, so now it’s Central Valley allergies), tumors that make me feel like a washboard, living and breathing fear too long, not sleeping, and being emotionally and physically exhausted, made me quiet for awhile.

A friend called me “spiritually fearless” yesterday. I didn’t know what she meant (I do now), but the phrase itself gave me enough willingness to wrestle that I actually want to write again. That’s a good thing. I have some things to sort out, about fears in general. Frustration and hope. Me and time and God.

First, thank you to everyone who donated to the American Cancer Society through my Relay for Life page. I meant to thank people individually, but hardly ever did. I was coughing like mad, knew my soft-tissue tumors were growing, felt awful emotionally and physically, and mostly went inside. I dredged myself up to respond to people on Facebook, but that was the extent of my interaction. So, thank you. You are helping more people in more ways than you know. Including me, just by being here and supporting me.

The Relay itself was, well, a victory party that felt very strange to be attending. When I chose one, I was looking for something within commuting distance that I was likely to be alive for. Sacramento in mid-April seemed like a good bet. Sac State sponsored it; their first time. Turnout was small, and I was twice the age of most people there. But their hearts were in it, even if it did feel like a cancer-themed frat party. Thing is, I’m just not a gung-ho kid anymore. I’ve been living with cancer for three years. I know who’s winning, even if I do have more hope now than I did then. I looked at these happy, innocent 20-year-olds playing Frisbee in the center of the track, and I felt so distant from them.

They had one speaker before the survivor’s lap. He’d had stage I Ewing’s sarcoma when he was 9, and has been in remission for 12 years. He’s a student at UC Davis now. Childhood cancer is horrible. I know that. But I felt envious of his health. He looked, moved, and breathed like any other college student. He can feel confident that he’s done. I never will be.

I was okay during the survivors’ lap, except that walking on uneven ground aggravated my already hurt knee. (I think I injured it initially by going down on it too hard, getting out of the shower coughing and gagging.) A and I walked the survivors’ and caregivers’ lap together. She asked how I was, and that’s when I lost it. After our lap was over, we tried to watch the first team lap for awhile, but I was a sobbing mess and we both wanted to leave. While I know I have survived this, so far, I also know I won’t continue to. I’m here because of my doctors, my friends, and the sum total of good luck I’ve had in this: catching my primary tumor before it had already metastasized, and biochemo having held the tumors steady for as long as I was on it. My survival has very little to do with me, other than being lifted up by everyone around me, and cooperating with medical decisions. It’s not like you can be good enough or strong enough to beat this. We’re doing the best we can to fight it with the tools we have. I have no more control over cancer than that.

I remember figuring out last summer that it was the lack of control that scared me. I think that’s in the mix again now. I can see my soft-tissue tumors, and know that they are growing. (I found five new ones in the space of 24 hours, last weekend.) I can’t see inside my skull. (I’m trying to schedule a follow-up MRI; less for my peace of mind than because I’ll need documentation that the brain mets are under control, for any kind of clinical trial.) My cough terrified me until we figured out that it was a reaction to Temodar; I’m off that drug now because it visibly wasn’t working to control tumor growth. (Good news: I can breathe. Bad: now we have to look for something else that crosses the blood-brain barrier and has a sliver of a hope of working.)

A friend and I were talking about the dying process, resurrection, and what I’m afraid of. If the brain mets kill me, I will either go quickly with not very much warning, or slowly over weeks or months. Or something in between. There’s no way of predicting ahead of time. I think about that constantly. But when she asked, I thought, “Am I really afraid of it?” In a practical sense, I do think about seizures every time I get in the car. (I’ve never had one, or I wouldn’t be driving.) But I think my reluctance is at least as strong as my fear. I really just don’t want to leave. I love this life and this world; I don’t know any other. I love my friends here. I love wordplay and language and conversation. I love street fairs and farmer’s markets, fresh snap peas and real people playing real music, unplugged. I love the wind in the trees, the jasmine in the back yard, the feel and smell of spring. I love rocks and water and ocean waves. I love redwoods and rivers and getting my feet wet. This earth is still my home.

I’d rather pray from where I am, for as long as I can. The idea of absolute union with God doesn’t frighten, but it shocks me. My friend looks at that as adventure. I’m back here saying, “Wait—isn’t that like going off with a stranger?” Even though I know God knows me. It took me a long time to trust the humans I’m closest to. I feel God in wind and water, nature and morning tea. (When I do that—the Lenten and Holy Week readings have scared me off of Morning Prayer for awhile. I did it a few days ago, skipping the readings but praying the canticles anyway. I don’t want to argue with John, or take Jeremiah seriously and be afraid of God.) My image of God is diffuse and unfocused; I “get” the Spirit but have no use for a Father (Creator poses no such challenge), and Jesus is more in my head than my heart. I am grounded and comforted in human touch. I don’t want to leave the arms that hold me.

People look at me as a symbol of resurrection. They know how sick I am, but see me acting like myself and being completely alive underneath my headscarf. Or they read these words, and get a sense of the spirit in the writer that I am. Right now I don’t know what to do with the whole concept. How can I? I haven’t died. But I feel like I’ve been living Good Friday for an awfully long time.

When I was detoxing from interferon, and later after each biochemo cycle, I’d get a rush of energy and feel my core self coming back. I’d be all like, “Yay resurrection!” I knew that was too shallow to be real, though, and I know I need to get this more deeply than my body’s experience. My friend describes it as reunion: Mary seeing Jesus and thinking he’s the gardener, then realizing who he is. She’d never expected to see him. That kind of hope was never in her imagination—then she’s flooded with it. That, I get, but I don’t know what to do with it. It’s one piece in this puzzle that I’m still working out. I think I’ll understand it, while I’m still here—as much as any human can. But unless I win the medical lottery many times over, I won’t be one of the ones who is given years or decades more than they expected. We’ll keep trying things until none of them work, or until I’m too sick to keep going. I can hope for a cure, but I can’t put my faith there.

Some people tell me, and probably many others don’t, that they’re praying for a cure for me. I’ve really been struggling with that. I don’t believe in a pharmacist God. I have real issues with the idea of God curing a few people and not everyone. But because I won’t ask for it, and because I resist it, and because I’ll likely argue with you if you tell me that’s what you’re praying for—doesn’t mean I don’t want it. I’m sure some of my tug-of-war with God: “I love you/Who are you?” comes from here. The last thing I am is at peace. My feelings are a conflicted mess. I haven’t been able to sing out loud since before my walkabout. My soft-tissue tumors are growing, and I’m finding new ones. God knows what’s happening in my brain—the symptom that started this hasn’t returned since radiation, but where will I place my hope if it does? I’m watching this disease overtake my body, and all I can do is say yes to trying new treatments. If I can be cured, hell yes I want to be. Friend said, ask anyway. See how God works in you, if you put that between you. I haven’t, because the thought of asking sincerely makes me want to sob. But I want to try it—not because I think I’ll be cured, but to see what happens inside me, and between God and me. I’m going to the Ranch next week. I think I’ll find a safe space there, and let it go.

Medical next steps: not sure. Temodar didn’t work, so my doctor took me off of that on Tuesday. (I was on it cyclically, and due to start again Easter week.) Good for my breathing, as I said—bad because not a lot of drugs work against melanoma, and/or brain mets. The next thing looks like either ipiluminab or a clinical trial. I don’t know anything about the protocol for ipiluminab, only how toxic it is. It was only approved a few weeks ago. I may need to go to Los Angeles to get it—which sucks but at least isn’t Riverside. (I would go to the John Wayne Cancer Institute, outside the Kaiser system. My oncologist knows them, and has good feelings about them.) I could look up the protocols right now, but I don’t want to do that this soon before bed. I’m still not sleeping well, probably more from stress than anything else. The other option would be a clinical trial. A is researching those, with help from (I think) the Melanoma Research Foundation. The trick is finding a trial that will take you. I haven’t exhausted all other options—I haven’t tried high-dose IL-2. (It has some effect on 10% of patients, and doesn’t work against brain mets anyway.) We don’t know if my brain mets are stable. My having done interferon excludes me from some trials. So, we’ll just hope and see.

Realistic hope is hope nonetheless. I feel better than I did before talking to my oncologist on Tuesday. I know exactly where I am, prognosis-wise. I also know that I’ve lived ten months with a prognosis of six. Stranger things can happen, than an experiment working.

Of course I know I’m doing hope gymnastics. Call it denial if you like; I assure you it is not. You have to think like this, if your back’s against the wall. I walked out of my doctor’s office, already believing in the next unknown. If nothing works, I will watch myself get sicker and die. If something holds it at bay, or reverses the disease process, I will live. Holding on to hope keeps me able to get out of bed.

I avoided Lent, and I am avoiding Holy Week. As I said, I’m living Good Friday. My one exception is Easter Vigil at St. Gregory’s on Saturday. I’ve been wanting to Vigil with them for years, and was always either committed elsewhere or living too far away to make it work. But I made some friends on one of their Ranch weekends, and one of them is opening her home to me Saturday night. I really wanted to go to Olympia for the Procession of the Species, but this year it’s also on Holy Saturday. I’ve done the Procession lots of times. I’ve never done this. And I needed Easter more. (I'll try to go north, if I can, sometime later this spring.)

After that, a week of Ranch time. I’ll be there at the same time as the Threshold Choir. I know them and love them—I also know what they do, because the Bellingham branch sang to me over the phone. (They sing to people who are very sick, or dying.) I don’t know if sharing the space with them will be good, or hard, or both. But every inch of that place is holy. Some part of me will be healed. Grace always, always happens there.

I’m not dead yet, and I’m not giving up. The struggle’s getting more and more real, though. Particularly since I am still myself. I still feel like me. And I still just as passionately want to stay here.

Relay for Life

2011-04-02T22:21:00.000-07:00

Hi all,

I'm doing the American Cancer Society Relay for Life in Sacramento on April 16. I signed up two weeks ago, and finally tonight got it together and finished my fundraising page. (I'm still feeling the sleeplessness from a four-week course of steroids that went with radiation.) I'd been thinking about it since I was first in treatment, while I was still in seminary. I went to their website more recently, clicked the "Survivors" tab, and started crying. I also know that if I'm going to do this sort of thing, it needs to be now. I'm capable, mentally and physically competent, and in the lightest course of treatment (oral chemo only) that I've ever had.

Please don't feel pressured to contribute. Your love is enough. But please do feel welcome to. Money raised doesn't go directly to me, but it helps me and many others like me. You're helping to fund research, and support patients in any number of ways.

You are also welcome (very welcome) to walk the survivors' lap with me. The event begins at 10am at the Scottish Rite Masonic Center, 6151 H Street, Sacramento.

Thank you. Love to all.

Still okay, still here

2011-03-19T22:00:00.000-07:00

I’ve had more company this week, than I have in most years. I’m exhausted from people, though I love my friends; and steroids (given to counteract swelling caused by radiation), and this is the first chance I’ve had to catch up with myself. I’ve got bread rising in the oven, and it’s a blustery Saturday. I’m trying to settle down to write. A went to a quiet day at her church, so we’ve both had some good alone time.

Radiation’s been easy on me; much easier to take than chemo. I have one more treatment, on Monday. The hardest thing about it is the steroids. I’m on a low dose, but they wreak havoc with my sleep. I go down around midnight, and am invariably awake by 3. Sometimes I doze for another hour or so. I get up at 6:30 to be at the cancer center by 8. (We’re both low-maintenance, but we share one bathroom. I’m the first up, because wiping down the shower makes me cough so I don’t do it anymore.) I lie down on the table and they bake my head, 45 seconds a side. We’re home by 8:15. The treatment itself is astonishingly easy; the steroids are the only reason it’s hard to endure. Sometimes I manage to nap later in the day, but not well. I don’t know how people on higher doses function at all.

I had my head shaved on Monday, because radiation irritates my scalp so much that I felt like I had fire ants crawling through a Brillo forest on my head. (I don’t think it helped, that my hair came in rough after chemo.) A friend played with my hair that Friday, and that was the last day I could stand it being touched. The last straw was when I accidentally touched my shirt to my head, getting dressed Monday morning, and yelped. Margaret had given me a recipe for homemade lotion, and I had to get at my scalp with something.

Here’s the recipe, the way I changed it. (She used baby oil, and more of it. I like the final product thicker.) After three days of using it, the pain started easing. It’s that healing itch... but it’s better than a burning rash. My skin’s clearing up, too.

Bathtub Skin Lotion

1 oz. almond oil
1 oz. vitamin E oil
a bit less than 2 oz. aloe vera
one tube (2 oz) lanolin

Mix it up in a food processor or blender. Apply to irritated skin. Feel soothed immediately.

I haven’t had time to go head-scarf shopping, so I’m wearing a purple and black tie-dye bandanna right now. (It keeps the salve off of everything else in the house.) I feel like a pirate warrior. I feel astonishingly healthy for being as sick as I am. I know the steroids give me extra energy, but please. I have freaking brain metastases. A cough that won’t go away. And I can do anything.

I wonder how long I’ll feel so invincible? I am so sick, and I feel so well, other than being generally exhausted from not sleeping. If you don’t look where my hair used to be, you’d never know I have stage IV anything. My soft-tissue tumors are covered by my clothes. My eyes look alive. I’ve gained a bit of weight because the steroids make me munchy.

Physically I look well. Spiritually I am well, and that’s obvious too. I am living in the moment. I get to embrace now. I have time, now, to inhabit the moment that I live in. Worry, yes; fear, when I think about how one dies of brain mets. (Unless I win the medical lottery several times over, they will kill me.) But grace, love and joy in every moment I choose to see them. You don’t live like this when you’re physically healthy. I was never this awake to grace.

Yes, I want more time. I know my prognosis, and I don’t want to die. But the quality of now, redeems so much. I’m not asleep anymore. I know that I’m loved. I don’t take time for granted. I’m truly happier than I’ve ever been. A friend says she senses a new peace in me. She’s right. I never had that, before. I seek it now, and I’m loving being here.

I don’t recommend a fatal disease as a way to wake up, but it happened to me, and I accept it. I’m more alive than I’ve ever been. I wouldn’t trade it for time that didn’t matter to me.

Would I like to take all these things I’m learning and loving and living in, and go on with a good long life? Yes, in a minute. But I don’t expect to get that. So I take what I know I have, which is this present breath. And I find that I do have time, in this exact now, for real life. Time to breathe, and time to say thank you. Time to walk in love.

It’s grace and gift, and I didn’t do it. I didn’t teach myself this; I never would have thought of it. This only can be God. I turned to God when I was afraid not to. God met me in love.

When I was well, I had dry spells all the time. I’d go without praying—in any form—for months, and feel guilty about it. Connecting with God felt like work. Now, it’s as easy as noticing the light. I make time because I want to. A takes me to radiation in the morning. We get home; she makes her lunch and goes to work. I light a candle that a friend gave me, and I sit down on the couch and do Morning Prayer, out of the BCP with canticles from Enriching Our Worship. (I tried other rites, and settled into this one.) I do it because every morning God meets me there. I do it because I want to say thank you—and once I get going I don’t stop until I’m empty. I do it because I need that connection. I do it because I want God and me to be friends. And we are.

A and I do Compline from the New Zealand Prayer Book every night. We used to think we couldn’t pray formally together because we’d laugh too much. (We’ve never in our lives said a straight grace over dinner.) We’ve taken to this, and we love it. It connects us to each other, and to God.

It’s a simple, gentle, peace. I’d no more skip these times than skip Eucharist. This connection keeps me grounded, keeps me fed, keeps me truly alive. And I’m finding it now, when grace and love and peace and time mean what they never could have meant before.

All I can possibly say is thank you.

I mentioned I’d had a lot of company. I came down with the brain mets, and lost my sense of chronos time. My symptoms now are no worse than when I was diagnosed, but I couldn’t have known that would be. (And I don’t know how long it will last.) It started with Olympia friends who may as well be family, taking the train to spend last Saturday with me. My old minister, their friend (and across the street neighbor for decades) sent music along with them for me. It happens to be a group of these friends chanting the Beatitudes in Aramaic. Which is cool, because the sender is herself now a Sufi. Monday, my mentor from seminary and her wife came over from the Bay Area. We went to lunch at a Greek place in town (giving me baklava cheesecake twice in three days), drove around town looking at violins (more on that later), and Molly played guitar for us while Liza slathered my head for over an hour with the lotion I’d just made. I think I had a day off (I’m not looking at my calendar), then my big brother from seminary came and we spent the morning talking on the couch. Then another friend from the same place, whom I’d just visited on my walkabout in SoCal, took the train up and spent a night here. We talked, went walking in a county park, and ate a lot of sushi.

All of them are friends for life. It’s wonderful. I love them, and I’ve loved having them here. I also had no idea how exhausted I’d be on steroids. That’s a lot of company in one week. I want to see everyone. I’m also ambulatory and able to drive, right now. So I’d really like to keep seeing people... but as a steadier stream, not all in one week! I and we will have to work that out. I’m going up to Sac to see a friend on Wednesday. Her job is in Honduras this year, so we don’t get to see each other much. I’ve never seen her let the weird get to her. She’s stable and grounded and so very good for me.

Tuesday is doctor and medical social worker appointments. I need to go over Medic Alert paperwork in person with my doctor, and I want to ask him how we watch me now. What kind of signs should I be alert for? Or should I just live and try not to worry? (I want to know, though, how likely it would be for me to feel well and start having something like seizures. I know that things can happen when you don’t expect them.)

I think I have most of the rest of next week off. I really do need to balance social and catch-up time. Friday, my friend Kat is flying up from Phoenix to spend the weekend here. I just spent a week with her on my walkabout. We’re planning to go to Santa Cruz and play on the beach, even though it’s supposed to rain. We’ll go to church in Fremont where my friend will be presiding, and go exploring in the Bay Area until it’s time to go to the airport. I can’t wait to see her, and I’ll have had enough of a social break that I’ll be able to be all the way present and it’ll be fun. I’ll be tapering off the steroids by then, too. (My last radiation treatment is Monday.)

I mentioned looking for violins. A and I went to see Robin and Linda Williams at the Palms in Winters, last week. We were sitting there listening to them, and I leaned over to her and said, “I need a goal that’s fun. I’ve got one. I want to play old-time fiddle tunes.” I’ve never touched a violin in my life. She surprised me by not falling out of her chair. So I’m going to do it. I’d been thinking about it off and on for years, but certainly I wasn’t in the position to actually do this and take lessons. Now, it’s a part of living in the moment. Do what you love and what you want to do. I can practice when she’s not home. I may or may not get out of the dying-duck stage. I don’t know how far I’ll get. But it’s something fun to focus and work on, that takes my mind off of “Having a fatal disease sucks.” It’s less emotionally grueling than the ordination process, which I’m still committed to in between bouts of panic and new treatments. It’s something just for me. I can probably find a teacher on Craigslist. I don’t know the local old-time music scene, or even if there is one—but if I can get to Sac or the Bay Area, I can play with people when I have the faintest idea of what I’m doing. That kind of community would be an awful lot of fun.

So that’s the news from here. I’m doing much better than I thought I’d be. I’m hopeful and alive. And genuinely happy, in a host of new ways. Bathed in grace and hope and love. Keeping the wild dogs at bay, at least for now.

Thank you all for being with me, loving me and praying with me. Your embrace means more than you know.

Written on Ash Wednesday

2011-03-09T19:11:00.000-08:00

Mindful time. That’s what I’m engaging in right now.

I’ve been working on planning my memorial. Actually, I started in September, when I didn’t know whether biochemo was working, felt awful most of the time, and realized how much I cared about what will happen in that liturgy. I put it away when my tumor growth stabilized.

I picked it up again last week. Brain mets make planning how to leave, urgent again. I’ve done most of what I need to, besides pick the readings. I haven’t really gone through the BCP service and plotted every step, but I’ve suggested elements. I have a list of hymns I like. I’ve thought a lot about who I want to participate, how. I’ve specified the people who can finish it for me. A friend asked when she came over here with cookies, what I’d been doing. I said, “It’ll sound morbid to you.” And I told her. Her own mother died with little warning, so she appreciated that people will know what I want. I’m ambivalent about making myself do it—but it actually becomes a life-giving activity, when I let myself get into it. I like being able to give that kind of thought to my leaving.

Who really gets time to plan their own ritual of dying? Who is conscious that every time they do something, it could be the last time they experience it? Who lives constantly with a greeting in their mouth, and goodbye in the back of their mind?

Me. And I’m still navigating how to do this gracefully.

I made a date last Friday with a friend, for this coming. A week in advance. She lives about an hour away. Every other time we’ve done this, I’ve gotten myself there, we’ve visited, I’ve gotten myself home again without incident. (I e-mail to tell her I got home safely, but that’s because I’m social like that, and have usually been thinking about some aspect of our conversation on the drive.) Between us, I’ve been the more confident driver. I could count the times I’ve driven there in the past few months, if I thought about it; every couple of weeks or so. Needless to say, I know the way. It’s not far off the freeway, halfway between here and Berkeley. I used to drive twice that distance without thinking, round trip at least once a month.

So we made the date. And she said, if you need this to be at your house instead, I’m there. I knew she’d say that, because we’d talked about the possibility of neuro events and me not being able to drive. I haven’t been taken off the road. (My oncologist told me I might want to minimize it. He didn’t tell me to stop.) I’m not having headaches, other than from tension when I think about my head. I have small sensory “static” episodes that come and go, every few days now. (My left hand and foot feel tingly for about half a minute. The frequency and length have increased since I began radiation, probably due to it.) Nothing on the order of loss of consciousness; no motor impairment. Still, I feel like it could happen anytime. And my friend wants me to know that she’s there for me wherever, whenever I need her to be.

Waiting for the big one is no way to live. I know that, and I can’t stop thinking that way anyway. I can plan reasonably confidently for tomorrow. A week away always gives itself a “maybe.” Meanwhile, I appear and am completely capable.

I talked after church on Sunday with a friend who’s an oncology nurse. She’s got her own set of mind games for fighting cancer. I see where she’s coming from, but they don’t work for me. She asked if I could take the contingency out of my plans: i.e., don’t say I can do something “if my health holds up.” I told her I feel better being honest about it. And I do.

When I get my MedicAlert bracelet, will I feel better about driving? Probably. I’ll feel more secure in general, and I wish I had it right now. If I got a bad headache on the road, I’d pull over. I’m not going to be stupid or unsafe. The sensible thing to do would be to call 911. I don’t want to be coded. I can stipulate comfort care only, but there’s a form that has to go through my doctor first, and then I can get the bracelet and know my wishes will be respected. A found it online, and e-mailed it to me yesterday. If I were to call 911 in California right now, they’d be legally bound to take extreme measures. I don’t want that. If I’m going, let me go.

If A (being my health care agent anyway) took me to the hospital herself, I have an advance directive that empowers her to speak for me. She knows what I want, and agrees. I don’t have anything on paper that says, comfort care only please. I don’t remember there being a space on Kaiser’s form to specify it. But I did all that, and my will and power of attorney, in the blur of last summer’s diagnosis.

I’ll take care of MedicAlert tomorrow. Today I needed a writing day, at home.

A and I have tickets for Fiddler on the Roof in April. I’ve never seen the play. We know there’s a chance we might not make it. We’re living in hope that we will.

A friend I just stayed with on my walkabout in Arizona, is aiming to come for the last weekend in March. I know what I want to have happen. We’ll do whatever on Saturday, bring her to church in Fremont where my friend will be on Sunday, go to the beach after and fly her home. It’ll be a blast. What’s weird is that’s two and a half weeks away, and I can’t count on being intact then. I won’t know whether radiation is working, for weeks after I’ve finished it (unless symptoms tell me otherwise). I’m taking Temodar (oral chemo capsules) to supplement it, and found another soft-tissue tumor on Sunday. I was completely discouraged, frustrated, and out of sorts the whole day, and haven’t really recovered yet.

Feisty, yes, I am. I have to hold onto what hope I can find, and I have to be tenacious and never let it go. I know I still look invincible. I can still speak like I am. My hair's back in, kind of wildly curly. I’m cognitively whole, and I’m as completely myself as I’ve always been. But I can also begin to see peripherally, the disease closing in on me. I’ve been fighting this for three years, next month. I know where I’ve been. The treatments I’ve taken either didn’t work, or worked only as long as I took them. I know how wily this disease is, and I know how well it has found its way around my defenses. I still hope to survive. But I don’t expect to.

I coped with it better when it wasn’t in my brain. My skull is an enclosed space. When those things grow, there’s no room for anything to move over. 75% of stage IV melanoma patients develop brain mets. I didn’t know that, until I had them. (You protect yourself from the knowledge that you don’t need, until you need it. They travel most easily from the lungs.) Once you get them, you can live long-term if everything responds to the treatments you take. I can hope that I will, but I can’t count on that. My oncologist said that my lungs have time. I live on hope gymnastics.

They don’t normally do follow-up imaging after radiation; they go by symptoms to see if you’ve responded. I’m going to ask for an MRI anyway. If the brain mets are under control, there are clinical trials I can get into. But my radiation oncologist told me to wait weeks. Radiation keeps working after you finish going in for treatments. If I do it too soon, the difference won’t be apparent.

It’s all a testing-trying-waiting game. It gets emotionally and physically exhausting. If this were five or ten years from now, there would be tools. I’m happening at the same time as all these early, promising advances—but too early, to help me so far. You trust what your doctors tell you will help, because you have to place your hope in something. But I look at my own history, and I know exactly where I’ve been.

*****
Which is why, today is Ash Wednesday and I’m avoiding church like the plague. The last thing I need to hear is, “Remember you are dust, and to dust you shall return.” I know that very well, already. I don’t think I could bear to have ashes smudged on my forehead tonight.

A is going out in a few minutes to her service (where she’ll say the omitted alleluias under her breath); I’m staying home. Other than her ashes tonight, we’re both avoiding Lent altogether. We’ve been in it, because my body is. We don’t need to practice self-denial. We’re getting message after message, denying us time.

I need to claim Easter now, because I have no idea if I’ll be here on the liturgical date. My hope is in the Resurrection; I’ll be damned if I’m putting that off for six weeks because the church tells me it’s time to. I’m with the Orthodox; why are we ever proscribed from praising? God’s nature does not change because of our season.

What am I doing for Lent? Saying alleluia and living in the moment. Seizing the joys that I can find. Looking for perfect nows. Spending time with friends. Being alive and awake in love. Doing Morning Prayer alone and Compline with A, as I have been; curling up in the words and rhythms and resting in the presence of God. Being hopeful when I can about my body; recognizing that I can live the way my body is right now. Knowing that life and breath are gifts, even when I cough so hard in the morning that I gag getting out of my shower. Taking the time I have to be conscious and whole, to be really where and with whom I am. Walking in the presence of beauty—because it’s easy to find when that’s all you’re looking for.

Being. alive. now.

Starting radiation

2011-02-28T21:08:00.000-08:00

I start tomorrow. I’ve been all over the map about doing it.

I probably should have started earlier. My MRI was eleven days ago; it came back the next morning, a Friday. My oncologist was out of town Monday-Wednesday last week. He referred me to a cancer center in Rancho Cordova. They weren’t sure whether he meant them specifically, or if South Sac would do (since I live in Stockton). South Sac called me on Wednesday, and asked if I’d like to be referred to a center in Stockton that contracts with Kaiser. I said sure. St. Teresa’s Cancer Center in Stockton wanted me to come in the next day. I was at the Ranch, and wanted just one more week of normal. Honestly, I was and am tired of cancer intervening in my life. I said Friday would be okay; I had an oncology appointment in the afternoon anyway. They couldn’t fit me in, so I had my consultation with St. Teresa’s this morning.

Meanwhile, I’d been researching whole-brain radiation, and was stark raving terrified. I asked on the ACOR melanoma list about brain mets, radiation, and people’s experiences. Everyone (about eight people) said, don’t do it, but to try getting gamma-knife radiation instead. Their loved ones had lost not only short-term memory, but the ability and desire to communicate. That’s too integral to me. I didn’t want to risk losing myself. I also found some studies online that weren’t very encouraging about the benefits. It may shrink tumors. There are no guarantees. Median survival with untreated melanoma brain mets is one month. With whole-brain radiation, it’s four. I wasn’t completely ready to say no, but I was leaning strongly toward it. If I only had that little time, I wanted to be as intact as myself as I could be.

I couldn’t find peace with that decision, though. I woke up several nights, terrified of seizure, stroke, or brain bleed. (My tumors weren't even causing edema yet, on the MRI. But if the brain mets kill me, that will be how.) Those three days at the Ranch, where I was because I’d asked to help host the Dio NorCal clergy conference before I knew about my brain, were the most surreal days of my entire life. I was with my own clergy, friends and acquaintances, and total strangers. A friend and I had a couple sessions of just holding each other in the chapel. (She made me a tree of life pendant; she said I needed an oak tree. I wear it all the time now.) People I didn’t know would ask how I was, and I’d say, “Fine.” I was so emotionally elsewhere, that there was no one way to be. Melanoma brain mets basically are a death sentence. I don’t know of any long-term survivors. The treatment scared me more than the natural process of the disease. I went for hikes, and tried to imprint the feel of damp earth under my shoes. I’m sure I walked around hollow-eyed most of the time. Grief didn’t really hit me until I talked to the radiation oncologist who’s going to be treating me, over the phone. He told me I was ineligible for gamma-knife treatment (more precise, slightly longer life expectancy, less side effects) because I have too many metastases. I got off the phone and just started crying. I’ve never felt so profoundly sad. If I treat this, I risk cognitive and personality changes (or so I’d believed from the research I’d done). If I don’t, I’m choosing to die. I wanted to take control where I could. I preferred to go consciously, though probably quickly. But the actual possibility opened up raw grief.

It hit me again when I said goodbye to the staff, which I never make a point of doing. I wasn’t actually leaving for another couple of hours. One of them said, come back by on your way out. I looked at her and said, “Now is now.” I heard myself say that. And I had to leave the office before I started sobbing.

I went to CDSP for Community Night on Thursday, because I’d previously planned to (when cancer wasn’t immediately fatal and I’d wanted to see my friends), and because I was going home from Healdsburg via Berkeley, so was staying the night with a friend in Livermore. I second-guessed myself for being there, all during Eucharist. I’d just said way too many goodbyes at the Ranch. I was raw, and exhausted. But then I got to have dinner with my advisor, who asked me self-conscious questions (which were absolutely fine) and was her usual loving self. I was really glad to have time with her.

Unbeknownst to me, my wallet fell out of my pocket on the sidewalk in front of La Val’s. I was oblivious until the next morning when A called me, couldn’t reach me because I ignored my cell when it rang, and then called the friend I was with. The person who found it (ID and credit cards still inside) spoke Spanish as his first language. I understand a little, but speak next to none. I was nervous about the way he, another friend of mine, and I were trying to coordinate getting it back to me. And then I left my aircard at my friend’s house. She could have mailed it, and I’d have been fine with that, but I was rattled without my wallet. (I had a meltdown that night, triggered by my displaced wallet but really about the time bombs in my head. I wanted something not to be broken.)

A and I went together to my oncologist appointment on Friday. He played down the cognitive risks I’d been afraid of. I was still struggling. “Is it really life, if I’m not intact as me? Can I give this a chance? Do I want more time, whatever it costs me?” I wasn’t at peace in either direction.

We took Saturday to retrieve the bits of me that I’d left all over creation, and to go play in the city. We had sushi for lunch in Berkeley, then went to the Exploratorium because I’d always wanted to. We played with experiments for about an hour, until we’d both had enough of crowds. We’d talked about going to Muir Woods after, or maybe just going to the coast the next day and visiting the redwoods there. I realized that what I really wanted to do was walk on the Golden Gate Bridge. I’d never done it, because I have a weird mix of fear of heights and desire to fly. I’d wanted to walk there, but only if I had somebody with me. I didn’t know that A hadn’t done it either. We got there right around 4. It was cold and windy, but clear, and still full daylight. The city does gorgeous so incredibly well. We stopped here and there and took pictures of each other, playing but also (at least I was) proactively remembering. The views from up there were so beautiful it hurt. I don’t even think we talked that much; we were mostly quiet, taking everything in. Praying was as easy as noticing the light. I was glowing, and I knew it. I hadn’t been that happy in a long, long time.

We walked to the tower at the Marin end, and walked back as the sun was setting. The lights on the bridge came on. The hills glowed green-purple and the sky was pink. The city was sparkling, windows reflecting sky. We both were entranced by the beauty of everything.

It was the most perfect “now,” that I have ever had.

Yesterday morning, we went to church in Fremont (just over an hour away) because the same friend I’d just stayed with was preaching and presiding there. We both love the way she does church. We love her. And I wanted to experience that again, while I’m alive and neurologically intact.

We ended up sitting with friends of hers, whom we didn’t know. The four of us cracked up together. Throughout the service, I wasn’t trying to remember or hold onto anything. I got to just enjoy being there. Then she gave me communion. I went back to my seat, and tasted the bread and wine in my mouth. I caught myself wondering, "What will communion be on the other side?" This friend is also priest to me; she's walked with me through formation wherever it seemed to be going, and she will midwife my death. I realized, “She’ll communicate me again. But it probably won’t be inside a church building.”

We talked for a little while after. She said she’d be back on 3 Lent. I did the mental math. And I knew, if I wanted to be there I’d have to go through with whole-brain radiation.

It clicked. The seesaw tipped. I had something concrete to hope for. I know what will happen if I don’t do it. I know what might happen if I do. And I’d rather raise my head, than be stark raving terrified. I’d rather believe that life can happen. I found out that I still can.

I love this world, and I don’t want to leave yet. I just want a little more time. I want some more amazing days. This is what I have to do, to have a chance at that.

A and I went to the coast after church; Seacliff is only an hour or so from there. We walked in the water. And we talked about hope. About ministry, and how she sees me doing my priesthood now. About the community that’s gathered around this blog, around me. My wet, sandy feet remembered my baptism. My heart remembered what it’s like to feel called, and to be up for the challenge of doing well what you’re called to do. I felt better than I have in weeks. I felt like I could hope again.

I have felt a calling to homeless ministry. If I were healthy, I still would be seeking ordination to take the sacraments to the street. (I haven’t finally given up on that; I can’t focus on it now, though.) I love being with them, and they know it. I’m good at it. Easy in my skin. Comfortable. But the work that’s truly, completely mine is embodied in these words you’re reading. This writing is as natural as breathing. I never felt called in the same sense to being transparent in this space, but I do it and I know that God is here. I started almost three years ago, in absolute panic, reaching out for a community not to it. Now I know you. I know you are here. People tell me I give them hope. You should know that your love sustains me.

We went for my radiation consultation this morning. The staff there are all wonderful. They honor your humanity in all kinds of little ways. I asked specifically about the cognitive side effects I’m afraid of. The radiation oncologist made it sound like that’s disease progression, not caused by radiation. I know that I can mentally get through 15 treatments. (My last is scheduled for 3/21.) I don’t know that my body can. And the only way I’ll know it worked, is if I don’t develop more neuro symptoms.

I can ask for a post-radiation MRI to see if I’m eligible for clinical trials. I’ll have to gear up for hearing, yes it worked or no it didn’t. Maybe in three weeks I’ll be ready for that. I can work up the courage. Right now, I quake just thinking about it.

But last week, I wasn’t ready for what I’m doing tomorrow. Today I place my physical hope in it. This is the only treatment that may help my head. If it keeps the brain mets at bay, we look for something that will clear my lungs.

What sounded last week like too many hope gymnastics, just might work. I’d rather think of it as just within reach, than just outside of it. Much healthier mentally, to keep counting yourself in.

I need to be prayed over, around, with. All along, I’ve asked for wholeness. Clear eyes, as long as I can see. I’m so resistant to praying for a cure. I don’t want to believe in a capricious God. But I love this world, and I don’t want to leave. I really want radiation to work. My body doesn’t have more chances, if it doesn’t.

Just enough hope to get through one day at a time. Yes. But also, a point to the suffering. A reprieve. Life on this earth, that is actual life and not mere breathing. For as long as I can have it. That ends in quiet, me peaceful and ready, with the people I want around me. Not neurological catastrophes that rob me of one vital sense at a time, frightened and grieving. Not a massive seizure, sudden and violent.

Pray with me. Pray for me, in whatever ways make sense to you.

Thank you

2011-02-22T07:22:00.000-08:00

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?

2011-02-19T03:25:00.000-08:00

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

2011-02-18T20:51:00.000-08:00

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.

2011-02-18T10:26:00.000-08:00

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

2011-01-24T08:04:00.000-08:00

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

2011-01-22T14:56:00.000-08:00

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

2011-01-05T18:00:00.000-08:00

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

2010-12-31T12:38:00.000-08:00

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

2010-12-25T19:11:00.000-08:00

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

2010-11-26T18:25:00.000-08:00

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

2010-11-11T20:01:00.000-08:00

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

2010-11-01T19:36:00.000-07:00

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

2010-10-29T17:40:00.000-07:00

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

2010-10-20T08:48:00.000-07:00

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

2010-10-13T03:46:00.000-07:00

A and I are in the hotel in Riverside. We’ll take me to Kaiser in the afternoon. (Should I say “tomorrow” when it’s 3 a.m. now?)

We landed, stopped at Trader Joe’s for food for the week (more for A than for me; I don’t eat much when I’m on chemo), and came here. I called our friend Diane to ask when she wanted us for dinner; she and her friend Rose always host us on the first evening. I got her voicemail, and she called right back.

Her very dear friend had died suddenly of a heart attack that morning. I’d met Mark; he had also brought me food in the hospital. He was a big, loving, generous, hilarious, good-hearted theater geek. (He’d just started playing Daddy Warbucks in a local production of Annie. He’d wanted the role forever.) He jumped on the hospitality bandwagon, feeding a sick stranger (me) because of course he would. He was just a good person. He was strikingly vivacious and alive. To have met him, was to love him.

If cancer kills me, I’ll have had warning. I have time. Mark didn’t.

I wrote a friend and told her, because I tell her too much of everything not to and because she wants to share my experience in cancerland as much as she can. She wrote back that of course she’d pray for Mark and his family, and for us—and that she’d just gotten asked to do a funeral for a 22-year-old bicyclist who’d been crushed underneath a bus in the city.

What words begin to respond to that? I wrestle with life and death daily. I’ve gotten to a place where I know what a gift it is to go there, and I rejoice in being able to give thanks for life. He was a kid, just starting out. He may not have even known what hit him.

I haven’t processed this, and won’t for awhile. I am so thankful for the gift of being able to be conscious of time. I’ll miss Mark’s presence in my life and on this earth. People I love, really loved him.

Pray with the family of Mark Allen-Everett: his husband Jeff; their kids and grandkids. Our friends Rose and Diane; the community of St. George's Episcopal Church, Riverside; and a whole lot of theater people.

Figured out why I don't want a tattoo

2010-10-12T05:45:00.000-07:00

Yes, I need to do something to mark this illness. I need to sanctify it. I need that almost as much as I need to breathe.

But ink is too easy. I would get a solidarity symbol, if there were one. But just for me? I need to do something intentional with my being. Not just my skin.

If it’s about how to live now, then that’s what you do. Much deeper than anything I’d draw on myself. Walking around with an image on my skin would be redundant.

I have a storytelling tool; it’s the bracelet I wrote about before. I wear it when I’m doing what I’m called to, when I’m in difficult situations, when I want to talk about transformation. (If you haven’t seen it, it’s because it’s big on me—and because I don’t need tools when I’m talking with you.) The circle of saints will always matter to me. I will always be mindful of the giver, and the reason. I always know where it is. It’s often with me. It isn’t always on me.

There’s no fixed image that I want on me forever. Interpretations change. Stories change with them. I lived through this; I’m living through it now, I will live through it. It’s process. Not snapshot.

I’d rather you be able to ask me anything you want. Not always about the whatever-it-is that’s winding around my arm.

I loved that my clergy friends did this to me, in the comments to this post about what to do if I don't get a tattoo:

+ You are sealed by the Holy Spirit in baptism, and marked as Christ’s own forever. +

They got it more deeply than I did. THAT is what this is about. How, there are thousands of ways. Living into this is the intention.

For me it’s immediately about focus. My friend gave me a key yesterday; you start with some overarching, huge goal like living into your baptism, and you see what little things you do that fit into the circle.

Right now it’s about staying present to life, and to God. I’m going to be literally drugged out of my mind for the next week. But after that, and for the rest of time, I can live with this and through it and in it.

Knowing that, is absolutely liberating.

Epiphany

2010-10-11T22:19:00.000-07:00

I’m really posting this as a bookmark for later; to remember that I’ve been here and to walk with it more. I’m too tired to do any actual processing right now. And we’re flying south for what is hopefully my last chemo cycle, tomorrow. My brain will be absent for the next week.

I stopped to visit a friend, on the way home from the Ranch. We did what we do; talked about everything. I don’t remember what she said that provoked this, and she won’t either because she was jetlagged and could barely keep her eyes open by then. But I said to her, “It’s so much better over here.”

After healing of brokenness; after cancer which didn't break, but healed me. It’s better being through all of that, being truly and fully alive. Not being scared. I am so fucking long-since done with being broken. I love myself now.

I meant it. I've known for most of this journey that I wouldn't take it back. My walk with cancer made me who I am. But until this afternoon, I wasn't through it enough to say it's better on this side. I always knew I would get to this point—but I hadn't realized I was this far already. I made the leap while we were talking. She was there to say that to.

That's what resurrection is.

What do you do, if you don’t mark your body?

2010-10-09T17:01:00.000-07:00

I don’t want a tattoo. At least, I don’t think I do. But I’ve been thinking about the idea for awhile.

In the friends-I-never-get-to-see category, there’s someone here this weekend whose tattoo I’d only seen on Facebook. I asked to see it in real life. His wife jumped on it: “With what you’ve been through, you should totally get one.”

Wow. I wonder why that’s the go-to celebration? It absolutely is. When I had my cancer surgery two years ago, I thought of getting a cartilage piercing on my ear near the surgery site. I didn’t, because the scars are sacred enough. And I didn’t want to have to take metal jewelry out of sensitive places, for future scans.

K said, “Get a tattoo.” What she really meant was, “Hallow your body.” I get the connection; really I do. I’ve thought along those lines myself. But I have enough exposure to needles right now. And there isn’t a design I really want.

I called A this morning and we chatted about it. She doesn’t like the idea. But she said, “If there were a universal symbol for cancer survivor...” She nailed it. I’d mark my body in solidarity, in a New York second. I’d probably draw it on myself in Sharpie, and wear it around right now. But there isn’t one.

There’s the black ribbon for melanoma awareness, but I have no connection with that symbol at all. I’ve been thinking. If you have breast cancer, you can choose to be obvious or not afterwards, depending on how radical your surgery was and what you want to do. My scars are mostly where nobody will see. And for many of us, after the hair grows back (I’ve been leaving mine everywhere I go for two months, but it only looks thin even to me when it’s wet), there are no obvious physical signs.

What we have is community around the newly diagnosed. We have our stories. Two and a half years ago, shellshocked and disbelieving, I hung up the phone after my doctor called me. I turned to my community—seminarians, teachers and blog readers—and announced how terrified and helpless I felt. People were there for me in whatever ways they could be. And then I ran into a classmate in the parking lot. She said to me, “I had breast cancer eleven years ago.”

It was this:
“Oh, shit.”
“Been there. Let’s talk.”

I tell my own story all the time. Not because I either need help or am giving it, but because I’m living it right now. My friends imagine what I’m going through, and they care, so I tell them. I actually like it when people ask me questions. I get to talk about it. That also helps me process.

I can answer deeply, or not:
“I haven’t seen you in ages. I don’t write, but I read everything. How are you?”
“Fine right now. Treatment’s working. I get to be happy being alive.”

I don’t need mentoring through this, anymore. And I’m in the middle of it, so I can say to someone (or a group, like over my birthday weekend), “I know what this is like, and here’s what helps me through it.” I’m not yet cleanly on the other side.

If I live into normalcy long enough—by that I mean get up and go about my day, don’t throw up and don’t think about cancer—I will be like D when she met me that day in the parking lot. “You’re new. I know you’re scared. Let’s take a walk.” Or like Margaret, who met me online then and who still walks with me from the opposite coast. She said she doesn’t self-identify as a survivor very often anymore. But obviously she does, when people (like me) need her to. I’m at terms with what I’ve been through. I know what could be ahead of me—either health for a year or two or ten, or getting to be old. I’m more emotionally ready to be hit again with disease. I can do that moment in the doctor’s office. Long life is the great unknown to me.

Let me qualify what I said. I don’t need mentoring through crisis. I think I do, for finding my way back into life. But it’s not hard to find people. That’s just what happens. That’s what this community does. I tell my story; someone meets me with theirs.

If I live long enough, I’ll get to be one of them. And I think I’m figuring this out. If there were a physical, obvious sign that I could wear forever, I would do it. I want to be there for people when they’re looking for someone like me. But none of us ever do that. What D did in the parking lot was look perfectly normal, while she showed me her scrapbook from Mars.

Of course she came back different. But that was clear in the sacredness of what she did for me. Not in the shape of her chest. I’d have never known, except she told me.

If there were something like the pink triangle for cancer survivors, I’d get the ink. There isn’t. There’s no instant obviousness. We come out in relationship. We come out in story. It’s the way you wear it, on the inside.

I’m not done with this yet, but I’ve typed long enough. This is giving me a key, something to chew on for however long I get to. It’s another way of phrasing the question, “Who will I be now?”

I have questions along a side trail, about how to be in relationship with my post-cancer body itself—but I need to walk with them longer before I can get to the first beginning of that.

Mystified

2010-10-07T17:21:00.000-07:00

I’m socially puzzled. But in a good way.

I don’t know how to make the point without telling stories. I don’t know how to tell those stories, without people seeing themselves in them. More people than I realize, read my blog. This isn’t about any individuals. It’s about the phenomenon.

Here’s what’s sparking this:

I’m at the Ranch, hosting a group of whom I know some members well; some in the barest sense of slightly, and there are a few that I’d never met. One whom I’d met once—last winter, at a large group gathering—was really excited to see me. I mentioned that I’d never been where she lives. It’s famously gorgeous. She offered to put me up there, take me hiking. I said yes and thank you. She said something about everyone wanting to make sure that I’m okay.

She lives hours from me. We’re not part of each other’s virtual or face communities—we’re Facebook friends, but we never interact there. Literally, the only actual connection we’d ever had was eight months ago. I’m sure I was friendly then; I was hosting. She clearly is. But we didn’t follow up, other than probably me tagging probably her on Facebook. (I have a ridiculous number of virtual friends.)

It happens all the time. I have all these relationships that I don’t even know I have. People care about me, pray for me, love me from a distance. We often become actual friends, when one of us finally says something. What’s mystifying, is how little it takes to create it.

One of the people closest to me now, responded to a one-line e-mail with a love-beam that I could take a bath in. I realized I needed to tell her that there were no words for what seeing her had done for me. She felt the same. We’d been in each other’s peripheral vision for years; the relationship took off from us actually saying “thank you” and “I love you.”

Someone whose existence is one of my touchstones, wrote back and never forgot me after I messaged her last winter on Facebook. When I wrote her again after I was diagnosed in June, I was still in her awareness. She goes out of her way now to show me that I matter to her. She understands cancer; she caught my eye because we'd both had it. I thought she was brave; the wild thing is that I told her. And she responded. (A picture of her wearing a headscarf, baptizing a baby, is a prayer icon for me.)

I just went for a walk, to try to figure it out. I only got halfway there. I thought that I was confused about the power I have. I apparently really make an impression on people. But no, it isn’t that. Whatever I do has an effect that I’m happy with. I feel loved just for being. I don't need to work on that.

What’s mystifying isn’t the huge number of people who carry me and only by chance (if ever) let me know it. It’s that I do the exact same thing to them.

How is it possible, to love so many people and never say so? I don’t know. But I do it too. I send out prayer calls all the time, and I just trust that the people who respond to me mean it, and those who don’t, love me also. I wouldn’t write to them if we didn't have a history of caring. I paste my updates here, because I know how many people read this, and you look because I mean something to you. But I’ve gotten the same kind of mass e-mails from others, and not answered them. Before and after I learned what my community's visibility means to me.

There’s part of an answer in this: I’ve made a huge impression on one of my diocesan higher-ups, through the illness in particular. And she on me, because she’s a force of nature. I told her what I appreciate in her, in an e-mail this morning asking a vocational question. I think I was only free enough to say so, because I’ve been so sick. Really, why not? How often do any of us get to hear, “You rock because of X!” Some of the walls I was raised with, or put up to survive middle school and had never taken down, have dropped.

Is it an introvert thing? Nah, because I’m not so strongly over there anymore. My I and E are equal when I take the formal Meyers-Briggs; I need both quiet and community time.

I think it’s just oblivion. Not having enough attention—too busy looking or being elsewhere—to respond. I wonder if being here will help me make a lasting change in my own behavior. Or if I’ll forget, as I get well, if cancer fades into memory.

I don’t know. My community has meant so much. I really want to be part of it, myself. And the only way to do that is out loud. God hears silent prayer; I don’t, unless you tell me. I know I’m held up by so many hands, seen and unseen—but the ones I can hold are those who make themselves visible.

I remember people from church asking what they could do for me. I think I happened to be feeling particularly alone. I told them, “Tell me when you’re thinking about me.”

That’s still my best answer. But will I tell you, when I’m thinking of you?

Because the people I care about are more than my address book...

2010-10-05T16:35:00.000-07:00

Dear all,

I'm at the Ranch right now, doing what I do before I go south. It's gorgeous; I love fall up here. I won't miss the reason for doing this; but the ritual itself, walking and writing and being... yeah.

A and I fly to Riverside next Tuesday, the 12th. I have my consultation on the 13th and get admitted. Treatment starts the day after. We'll be home the 19th.

It's not the emotional big deal that it was, especially since I know that it's working. I can do damn near anything if it means that I live. Even though I ended up in the ICU the last two times, when my blood pressure crashed; there are meds they give you for it only on that floor. I liked it there; it's quiet, and the nurses are really good. They didn't try to make me walk my bp up at 3 a.m. And each time, the drugs for the side effects get better. It really isn't awful.

The bigger question is how to live, given hope in the moment and total uncertainty beyond it. I'll be working with that for awhile. But, I get to. Pray with me, in that space.

SoCal people: Do what you do best. Visit me. Bring me communion. Bring me yourselves. I'll come down and see you, when I'm not tethered to anything and can actually remember conversations.

"Death of death, and hell's destruction..."

Love to all.

Kirstin

Thinking about resurrection

2010-10-04T07:39:00.000-07:00

I meant to go to church yesterday, but threw up from lingering chemo-nausea so I stayed home. I ended up spending the entire day reading my blog. I didn’t mean to, but there I was. It helps me to go to some of those places sometimes—not to live there, but to visit. And I hadn’t read everything straight back to diagnosis in a long time.

I found so many references to resurrection. Including this one, from that first spring:

True resurrection is total: body, soul, mind, speech, will, intention. You wake up. You take a deep, long, healing breath. You unbind the cloths from around your body. You stretch your muscles, shake your bones. Scarred, but no longer bleeding, you walk into the light.

I was diagnosed during Easter season, and was very aware of it. I knew what I was talking about; the context was building a life, living in a way that I’d choose. But like all the rest of them, this reference is physical.

I may have just last week beaten cancer again. Or I may not have. Chances are it isn’t final, but yes of course I hope. And I’ve been thinking. When I was diagnosed the first time, I knew within a week that I would survive. My year with interferon was epic, but I knew I’d get through it, and I did. I was given a diagnosis this past June, that gives me until the week after Thanksgiving if I take it literally. I’m going to outlive that too. My tumors will likely grow again, but they may not. I may build my life and get to keep it. I can’t quite imagine that, but it could happen.

When I was diagnosed again, I was struck by not knowing anymore what resurrection meant. Here I was, fighting cancer twice. What does it mean to hold onto that particular hope, when your body is anything but certain of it? And now, given last week’s reprieve, I’m rejoicing again. But I don’t want my faith to be that conditional.

I’m not at a point where I know the disease will kill me. But remembering that, I’m reminded that we all will die. All I know about the afterlife is that God is love. I don’t think about it, or worry about it, ever. That isn’t what I’m getting at.

I’m thinking about resurrection and loving this life and knowing you’re going to lose it. I don’t even know how to frame my question, other than how do you claim that hope irrespective of your own body? How do you say the ultimate Yes to life, knowing that you yourself are going to die?

I have an appointment with my spiritual director in Sac today, on my way to the Ranch. I have tons of other things to talk with her about. But I was going to stop at the library up there and pick up Audre Lorde’s The Cancer Journals. I’m taking Bonhoeffer with me instead. Thank you, Margaret, for the idea. I don’t know how I’ve never read him.

Odds

2010-10-02T22:58:00.000-07:00

My doctor in Riverside wouldn’t tell me my statistics. All he would say was that there was no way of predicting, and they have people living twelve years after treatment. (We did discuss options, should the tumors start growing again.) I went online and looked later. I think I Googled “melanoma biochemotherapy” or somesuch.

CPMC (California Pacific Medical Center, in San Francisco) does a similar program to Kaiser. I couldn’t find the exact drugs online; it’s a safe assumption that they’re the same or very similar. (They list interferon, interleukin-2, and “three chemotherapy drugs.” I’m on both the immunotherapies, vinblastine, cisplatin, and temozolamide.) They report a 15% long-term survival rate.

That’s opposed to 5%, with standard treatments. Long-term survival is defined as five years.

It sobered me the first time I read it. Now? I’m used to this. I know my own history. I’ve been on the wrong side of 60% and the right side of 30. I know what I don’t control. The numbers focus for me: You don’t know how long you’ll be here. Live in now, and love while you can.

They don’t leave me cold, but they don’t freak me out either. And I think that’s why I’m sharing this. The difference between most of my friends and me is that I know exactly what I’m facing. I was told I had cancer two and a half years ago. I’ve had time to process what all of this means.

I know what most sane people would never choose to know. And I know I wouldn’t give it back. The knowledge of how finite my own time might be, makes me love my own life more.

I’m going to the Ranch next week, as per my usual pre-chemo routine. I’ll help host, I’ll walk, and I’ll write. I have a writing project that I’ve been kind of putting off, because I have no idea how to do it. I have to write a spiritual autobiography; it’s a process thing. God and me over my whole life, in five pages. The link to this blog doesn’t count.

Where am I stuck? Continuity between before cancer, and now. I felt a call before then, and it was enough to send me to school, but I’ll be damned if I knew what I was talking about. I found homeless ministry when I was in treatment the first time. I knew that documenting my life as a cancer patient was a ministry in itself. One is a passion; the other I do because it’s the way I’ve processed this illness and what it has taught me. There’s so much about both of these, that’s wrapped up in living on the outside. I've made my home where I am. I was shocked, but not surprised, when I was diagnosed again. I can’t really imagine life after cancer. I know I’ll never be “normal,” at least as long as I remember. And I know I don’t want to forget.

Meanwhile, I still feel damn well, except from chemo.

I feel like John the Baptist out here. Can you hear me? I was as healthy as you, before I was told that I wasn’t. You don’t know the time you have. Love your own life. Live in now, and love while you can.

Resurrection

2010-09-22T22:51:00.000-07:00

I want to write, before I lose my brain to chemo drugs for a week. (I'm in the hospital now. Treatment starts tomorrow morning at 6.) But I don’t know if I’m capable of making sense. I’m still processing all of this.

It hasn’t fully hit me yet, that the disease progression has been stopped. I’m on the right side of statistics. How the hell did that happen?

I know what it means, in practice: I have one more chemo cycle after this one, and I’ll be closely monitored after that. I’ll be transferred back to my oncologist at home for follow-up care. I could have months or years or decades with no further change. The tumors could shrink. Or they could start growing again at any time.

They are not growing right now. “Now” just got bigger than, “This exact present moment.” Now isn’t tinged in fear anymore. Now means, from this breath I’m inhaling, until I start throwing tumors again. Now could be a short or long time. Now could be until I die of something else. There is no way of predicting.

I have a feeling that I won't be done with cancer. And that's okay. It's been my teacher, and a good one. Maybe I just can't imagine this being permanently over.

I won’t have my life back. I wouldn’t want it. I don’t want to forget where I’ve been and what all of this has taught me. I’m grateful that I can touch two of these tumors. The reminders are there.

But I can live my life, again. I can give myself completely to the things that matter most to me. I don’t have to learn how to be fearless; I already know how to let love heal. I can let myself go into the wildness that graces the life I choose. I can be my strong, safe self. I'll live long enough to use the things these gifts have given me.

I felt threatened with no time. I had the time to go where I needed to go, and to learn what I needed to learn. Not just for my own emotional survival, but for the work in the world that I’m called to.

The tide went out a little, with the news I got this morning. The edge of the world got a little bit wider. But the ocean is never still, and I wouldn’t want it to be. The only true safety is the One who loves us all. That is enough, and more than enough. If you want to make a safe place, walk into the waves. Go into fearful places. Love the people who live there.

I’ve said over and over, God doesn’t give diseases. Biochemotherapy stopped the progression of this one. The idea that I’ve been somehow singled out gives me hives. But my path through this has been utterly bathed in grace. I can’t do the math. It doesn’t make sense to me. But it’s true. I needed to go as far as I went into terror, grief, and anxiety. And I had the experiences, fighting cancer twice, that made me go there. I learned how to transform and be transformed by love. I remember the scared, fragile, broken kid I was two and a half years ago, and my whole life before that. I know what my community and my God have healed in me. I know what resurrection means. And I will have the time, short or long, to live into it.

If you see a stranger on the road, and she offers you bread, it could be me.

Take that, cancer!

2010-09-22T11:04:00.000-07:00

For people not on my e-list.

I just got out of the doctor's office. He says I'm stable. As in, the tumors aren't growing. I'll have two more cycles (this week and October 13-20), and we'll watch me and see.

FUCK yeah.

It could be months or years or decades. And I'm getting what I wanted, really: the reminders are there and I know I still have it, but I can live my life.

There's no word for what I'm feeling--ecstatic comes close--but they can do whatever they want to me now. It's not remission, but it will do.

My friend hugged me two weeks ago and said it wasn’t now. She was right.

Love to everyone.

Kirstin

Two stories

2010-09-20T20:18:00.000-07:00

A and I are flying back to Riverside tomorrow. I’ll get readmitted to the hospital on Wednesday. This will be my fourth chemo cycle, and in the past week or so, I’m finally at peace with it. I’m sleeping better, and I feel calmer in general. I know it won’t be as hard on me, physically or emotionally, as it has been in the past.

That peace may be because I realize I’m three months into this diagnosis and feel no worse, and am wondering hopefully if we’re wrestling me into remission. It may be because I’m over the trauma of the first cycle, and realize how much gentler the last one was, with someone who really knew how to support me (and perhaps a body that’s becoming accustomed to it). It may be because A is coming with me, and we know each other well.

More than the chemo, I am at peace with the illness itself. I think it can also be explained by these two stories. I thank God for all good gifts.

1. The rim of the ocean
Was it really just over a week ago? Every cell in my body ached for ocean time. I had just had a day-long, wise and loving conversation that I really wanted to walk with and think about. I would have my first PCOM meeting the next day. I needed sand, water, wind, and prayer.

That Saturday I went to Seacliff, in Capitola, home of the concrete boat. A and I had been there several times before. We were there in June, when I had just been fully diagnosed. It’s familiar, and not hard to get to. It’s only two hours from home.

I drove with my current musical crush—Laura Love turned up loud—and got there about an hour before high tide. I ate some gorgonzola pasta from Gayle’s, took off my sandals, unzipped the legs from my pants (yay for quick-drying fabric!) and started walking.

The water was a foot or two below dry sand, and the place where the slope flattens out. When I wanted my feet to get wet, they did. When I didn’t, I jumped out of the way. It didn’t take me long to realize that I was walking on the rim of the ocean. Dancing on edges, literally, even here.

I knew I was in no physical danger. I didn’t get wet above my knees, except when my shorts got splashed. If you’d only looked at my feet, I would have appeared to have been playing. But I got into the metaphor of it. I was walking, thinking about borderlands in general, and my work and my calling in particular. Fear/love; sickness/health; sheltered/homeless. How to articulate all of this, why these tidal zones are home. How I know that this is where my ministry is.

I got out of my head just long enough to realize something that left me wordless: My body was, in literal truth, dancing on edges. My thoughts only followed. This body that has been through so much pain and horror—that I have been cooperating with, in the name of health—still trusts the Spirit. Still can listen. Still knows how to quietly teach me. Still is absolutely, vitally connected.

I walked, in awe of that. Trying to find words. I could barely whisper, “Thank you.”

I got to the other end of the public beach, found the bathroom, and came out again. In those five minutes, the fog had blown in. I’d left my fleece in the car, and in my light layers, I was freezing. I didn’t want to be out there anymore.

I also had the rogue thought, that I didn’t want the tide to turn. I like being up here, balanced on precarious places. I’m getting good at it. I didn’t want to feel safe.

Catching the implication in that, there was no choice but to go back out. I walked back toward the car, my fleece, and the rest of my lunch. I glanced at my watch. Ten minutes, seven, five. I watched the water, wondering how I’d feel at the moment I knew the tide was turning.

I looked out at the lighthouse. I thought about danger, safety, and strength. And I kept walking. As long as I moved, I stayed warm enough. The water bathed my feet.

I realized something that only the ocean could have taught me. The moon pulls the tides, in and out, constantly. Water is always moving. Spirit is always moving. I’ve gotten comfortable walking with one foot in this world and one in the next. I’m becoming aware that I cherish the gifts that a potentially terminal illness is giving me. [A week later, I know that I am at peace with the illness itself.] Maybe I can help bring assurance of life to the dying. Maybe I can translate between them. I don’t know what it will mean yet, if I can stand with both feet firmly in this world, sharing the gifts from the next one. But I can walk in these borderlands, these tidal zones, all I want to. I can ask for welcome in homeless camps any time I like. Because I know that there is no true danger. Because this is where God has put me. Through gifts in the illness, by nature, or both, this is my home.

I walked back to the car, warmed up, ate the rest of my lunch, and went back out and played for an hour or two. I’d found what I was looking for. I was rejoicing.

2. Even this is gift
I spent several days last week on my geographic holy ground, the Bishop’s Ranch. I go there before every chemo cycle, to walk and write and be. I got to celebrate my birthday there. This happened the day before.

I ran into a friend at the Ranch, Wednesday morning. He’s a light for me, and a rare treat. I never know when I’m going to see him, and it isn’t more than once a year. He was in line for breakfast. I said to him, “The beast is back; pray for me.” And I told him that I really wanted to catch up with him.

He mingled with his own group, and then came and sat at the staff table with me. I told him all about my summer. The beach that weekend, the life-giving meaning in the owl (what if it’s not about death, but formation?), learning to dance on edges. How I had been so scared, and was now coming to peace. How I want to plant my feet in this world, with the gifts from the next one. How ridiculously alive I feel, and what I want to do with it.

He listened, completely with me. And he said, “I’m leading a retreat for Seniors of Grace (Cathedral). Now I know why we forgot the program this afternoon. Will you come and talk to them?”

I got shivers. And I said yes. He told me the outline of their retreat, and that I only needed to tell them what I had told him.

I went out hiking, and thought through it all again. I knew I didn’t need to be nervous. I had never done this publicly, but it totally felt right. I knew I could speak to them—but could I really take everything I’d been through, the spiritual wonderment and the physical and emotional crap that was the occasion for it, and use it all as gift? Could I minister to them, just by being me?

That’s what my friend had invited me to do. And that was amazing. That was gift to me.

We went over it again at lunch. The group’s focus was how they wanted to live, with finite time. Yes, I do think I know something about that. And I only need to tell my story. Okay. So I went back to my room, took fifteen minutes and a deep breath, and outlined things I wanted to remember to share.

I took my place in the circle in the Ranch House living room. He introduced me. I began by explaining my relationship to the Ranch (sort of adjunct staff), how I’d gotten to know my friend, and how we’d gotten talking that morning.

I said to them, “I’m a lot younger than everybody here. I’m turning 40 tomorrow. And, I’m fighting cancer for the second time.”

I told them stories: who I’d been before diagnosis, how it had changed me. Walking through the Cal campus, being told by a voice beyond my own that if I was open to this, I could learn from it. How my community responded in love to me, and how I learned to be open to that love. What it was like to make myself sick for a year. The experiences of this past summer.

He’d given me half an hour to speak. I didn’t think I’d ever fill it. But when I looked at my watch I had done so, perfectly. He directed them to go off on their own for half an hour to write, draw, be with themselves and the things I had just said. I thanked them for the gift they had given me. Some of them gave me hugs, just because they wanted to. Some stayed to talk. One asked me, “What do you think of the afterlife?”

I thought, “You’re asking me like I have any authority at all. Hmm. That’s a new experience. And I had no idea we were going there... but okay.” I told her, “I don’t think about it all that much. I know that God is love.”

Bumper sticker, yes, but true. And I’m not afraid of dying. I know that we will all be loved, then, like we are now—the difference may be that we’ll know it (if we didn’t). The experience of being asked that question will stay with me.

My friend and I went outside, and told more stories to each other about meeting Jesus in strange places (like the BART train). He went back in to lead the next phase of the retreat. I followed him to pick up my notebook and sandals. I went on with my day, being amazed at the gift I had been given.

I got to take everything I’d been through, and use it as gift to minister to others. I’m still almost speechless at the privilege. And I know it will happen more.

Epilogue
When I did my field ed at the Night Ministry, we had Eucharist outside in the Tenderloin on Sunday afternoons. (They still do; at McAllister and Leavenworth at 2, and in the Castro in front of the library at 5.) It was my first experience with street church. One day, I was around the perimeter of the circle gathered around the altar. I was trying to look welcoming: “Yes I know we’re having church in the middle of the street, but it really isn’t that weird.” A man came toward us. I’m guessing he was about 50, because he looked considerably older. He wore rumpled clothes, and dragged a suitcase. He wore a hospital bracelet, which for obvious reasons I zoomed in on.

He never spoke above a whisper. He seemed cautious and shy. I whispered to him what we were doing, and that he was welcome. Then—I don’t know how I missed what he was holding in his hand—he took a little green mesh basket of grapes, and offered it to me. Silently.

I took one. That was Eucharist.

I had completely forgotten that I told the group from Grace that story. I’m not even sure why I told them. The next morning, I went out for my usual after-breakfast hike. I stopped at the grape arbor for a snack (see where this is going?). I ran into my friend again, and I asked if he wanted some. I didn’t even think about it.

He took a grape. I went on my way.

He told me at lunch, he didn’t eat the grape right away. He looked at it, and thought about how I’d given it to him without thinking. In his own mind, he went to a place of spontaneity and radical openness. Hmm, his friend just gave him food. He told the group, when he got back together with them. (He’s the kind of person who’d be open to taking thoughtless encounters to spiritual conclusions. I’d have given him a tangerine, if I’d had one.)

The same person who asked me about the afterlife, remembered the story about the man with the basket of grapes. They used it, in their closing Eucharist. My friend ate the grape, for everyone.

When I think about it, I’m in awe again.

Shifting

2010-09-16T21:07:00.000-07:00

Again, this is for people who are not on my e-list. Love to all.

Hi all,

Today is my birthday, and it's been wonderful. Thank you to everyone who's celebrated with me via Facebook, phone, e-cards, and birthday cake. (Ranch staff, I love you.) I've had an incredible week, actually, and I'm feeling ridiculously alive. I'm also three months into a diagnosis that gives me six, and I feel no worse. My thinking is shifting from, "I could die," to, "I could live. So how do I want to?"

I don't know what the results of my PET scan are. I'm not waiting for that before I send this out, because that's not what it's about. I went looking in my blog from fall '08 to see if I'd told a particular story. I hadn't. (If you know it, I was looking for a reference to when the homeless man gave me communion.) But for those whom I've met more recently, my first round of cancer treatment involved self-injections of interferon three times a week, between July '08 and June '09. (These followed a month of IV infusions.) It made me achy and fatigued and cranky all the time. I found a mention of wanting to focus more energy on praying over the shots when I gave them to myself. It hit me like a kick in the chest--not in a violent way, but, "Ohhh.... I haven't been doing that."

I haven't been praying over these chemo rounds, because I've been too freaked out by them. It's terrifying to know you're going to lose all control of your body. (Throwing up is just a metaphor for everything else that happens.) I hate everything about this. But I'm over the trauma now. I know what's going to happen to me, and I know what isn't. I don't like it, but I know I can tolerate it.

I'm going back to Riverside next Tuesday, 9/21. I'll be admitted from the 22nd to 27th, and fly home on the 28th. Andee's coming with me. She is friend, housemate, and chief caregiver. She also hasn't witnessed this since the first, most hideous, cycle. I know it isn't going to be that traumatic anymore.

Pray for me, like you always do. But also pray with us, because now I can join you. Hold us both, my medical team, and this community that all of you are, in sacred time.

love,
Kirstin

At church, at home, safe and rejoicing

2010-09-13T21:59:00.000-07:00

I’m posting this from church, where I’m sleeping in the alcove for the first time since the night in May that I found the tumor. Safe Ground is in the Great Hall and outside in the courtyard. The other host is outside with them; it's a calm, warm night.

It's like slipping your skin back on, and you're you and you're real and you're home and you love it.

We've hosted them twice a month all summer, and about twice in total I wasn't in Riverside or recovering. I'd stop by for an hour, and need to leave. I couldn't deal with other people's needs. I'd be annoyed at someone who came to me with their headache. Or want to engage, but I just couldn't get outside of myself and be present to that many people.

I came up here tonight because I thought I was ready. I was right. They're mine and I'm theirs and we've missed each other so much. It is so good to be home. I let people minister to me, and it felt right. And I told someone who needs to see a doctor badly (and knows it) that if she made an appointment and I could go with her, I would. She knows how to find me on Facebook. And it felt right to give her that, too.

I’m having breakfast tomorrow with two organizer friends, and then driving to the Ranch until probably Friday. I'll get to have my birthday up there. (A and I already celebrated it, and will some more when I get back.) I had my PET scan yesterday, and if the Sunday-Thursday turnaround time holds true, I'll find out the results that day too. I’m honestly not stressed about it, one way or the other.

That, too, is gift and grace.

Dancing on edges

2010-09-10T21:25:00.000-07:00

I spent all day yesterday having buddha-time with a friend who loves me totally and truly sees me. All I want to do is go to the ocean and walk with that conversation—and I plan to do that tomorrow. Last night, I was asked to write a spiritual autobiography that’s due before Sunday morning. And two days ago, I found out what Sunday will look like: go to church and be blessed again for my birthday/being alive, stay there for my first PCOM (Parish Commission on Ministry) meeting, and dash back home afterward for my PET scan. I’m going to start what I’ve been passionately aching to get moving on, what so many people see me called to—and go immediately to cancerland to see whether the lethal disease I have is progressing, slowing, or shrinking.

I know a lot about dancing on edges. It doesn’t scare me anymore. I’m honestly happy to be up here. The process and cancer are wedded together—twisted so tightly that for now, they can’t be separated—and I think that for me, this is how it needs to be.

[Note: I’m going to be really careful when I write about personal aspects of the process. It’s going to get very intimate, quickly, and it needs its own private space to grow in. Also, I’ve read lots of bloggers who went into too much detail over their frustrations with the process, and I felt squirmy for them. My PCOM knows I’m a cancer patient; their job is to help me articulate my call. I know they care about me. The first thing I’ll tell them is I have this diagnosis and I’m in this treatment for it, but I am not fragile. I appreciate gentleness where I find it—but don’t treat me like I’m broken.]

Before I write what PCOM wants to read, I need to articulate this post. It’s been brewing in me for days, and I haven’t had time. I’m waist-deep in an epiphany that I haven’t found the language for yet.

I will either come back from cancer, possibly sooner than I’m emotionally prepared for, or it will kill me. I have one foot in this world and one in the next. That’s become not only comfortable, no longer scary—but life-giving and right. It almost scares me that life could be normal again. How quickly could being out of immediate danger (having evidence that chemo is working) lull me into the same denial I was in a year ago? I don’t want to go back to sleep. I don’t want to forget that all I know I have is now. I love this life. I know I could lose it. I don’t want to forget how to appreciate everything.

The medical protocol is less than enjoyable (though I’m no longer traumatized by it), and I’m very clear that I want to live. I want to plant both feet solidly in this world—with the gifts I carry from the next one. There is power there; light, grace, freedom, trust, and love. It’s a different way of seeing, an assurance and a way of knowing that I don’t know how to translate. I need to live with it for awhile before I can.

I want to live into being who this has called me to be. I know that no one ever will have power over me again. Sure, in a temporal sense—but not really. I am held in the only real power there is. I don’t know how to show you that the same is true for yourself, and for every human being. I know it’s part of the call; why else would I be drawn to people who have nothing they can hold in their hands? They have tons to teach me. I want to live through this, but not ever past it. I don’t want to lose this openness, this intimacy with the One who loves us all. If I forget where I’ve been, I will.

I know in my cancer-ridden bones that I'm only safe when my only safe place is this edge that I'm dancing on. Medical science hasn’t caught up to melanoma in any solidly reliable way. I can't trust my body to survive cancer on its own. My friends love me, and their love and touch are holy food. But they can't save or protect me. There is nothing else to hold onto. When I could deny the physical danger I was in—when I was in treatment two years ago, but my doctors hoped and I believed the surgery had cured me—that need for physical safety kept me from truly getting the point. The only safe place is the love that holds us all.

At the same time that I fear slipping back into denial, I know that I needed the wading pool before I could learn to swim in the ocean. I needed to gradually get used to the idea that I could die—not forty years from now, but at any time. If I had presented as metastatic two and a half years ago, I don’t know what it would have done to my head. I had time to learn to live with uncertainty. The time bomb that basically is my chest appeared on my PET scan this past June, and shocked my doctors probably more than it shocked me.

Yesterday, I told my friend the story of the owl. She gave me something I’d never thought of: what if this was not about death, but formation? In other words, what if I get to live with the owl’s gifts? I don’t think I ever asked the owl how to die. I’m so alive now, and I’ve assumed that she’d show me when the time came. I was at the Ranch, hiking on holy ground. I felt the owl’s spirit in a way I could only express in ecstasy and breathless terror. A week or so later, a high school classmate died of melanoma. He had what I most fear, physically: a brain bleed. Seemed obvious to me. But what if the owl wasn’t there to give me any assurance about my own dying? What if she was there to show me how to dance on holy ground? Owl flies at night; owl sees when humans can’t. Owl guides through dark places. What if she was there to show me how to live?

I get to ask all kinds of new questions. I don’t have to wait for PET results to do it. I don’t have to ask my doctors for permission to live. No fear, only embracing.

God doesn’t give diseases. But I had time to go where I needed to. I had time to witness the healing of wounds that only God in this illness could have healed. I regret nothing. I am grateful to be on this earth, alive, and who I am. What is all this, but grace?

Unknowing, and the one true thing

2010-09-06T23:19:00.000-07:00

I had a really good cry this morning, that I’d been needing for awhile without realizing it. A friend had touched a nerve, and I was really hurt by something that I knew was unthinking and unintentional. A helped me talk through it, and other things came slithering out underneath. We talked about how stressed we both have been by all of this. She said she knew something was brewing, because I haven’t been as available to her. I hadn’t been aware. It was good for us both to get everything out. “This isn’t about you, but AAAARGH!” “I know! I hate that too.”

(The friend in question understood, when I told her exactly what had hurt me.)

Cancer is really fucking hard. It’s hard on the person who has it, obviously. It’s hard on the closest people to them. It stresses all their relationships.

I have a body that feels well about 60% of the time. Sometimes more, sometimes less. Right now, you’d never guess that anything was wrong. People know the word “cancer,” and they see me when I’m well enough to be seen. It comes out of everybody’s mouth: “You look wonderful!” I know, and right then I actually am. I’m thinner but not frighteningly skinny, and I still have my hair. I haven’t seen you in weeks, and I’m glowing. Love will do that.

The problem is I can’t ever plan for anything. I find out at the end of each chemotherapy session, what the dates of the next cycle will be. I asked for my birthday off, and got lectured about it—then they gave it to me anyway. So I have a longer break in September. I can find out when I’m down there that my own calculations will be wrong, because I need an extra PET scan. I bounced back more quickly this time, which is good, but it makes it harder in a sense as well. “I’ll be back... here. So can I do X four days later? Want to, want to, want to....” and I’ll wake up that morning knowing whether I can.

I thought I could find a rhythm within this, space to actually live my life. I haven’t. The things I was involved in before, that I really want to pick up again, I know I would be welcomed and embraced back into. But there’s no way to put dates on a calendar. I have an uncommonly long recovery time this cycle, and my body has apparently adjusted well. So by now I tire easily, but feel just fine. I go back in two weeks. The next cycle, I think I’ll have two weeks off. And I can’t tell you right now, exactly which weeks those will be. I can guess, but if I’m wrong I’ll have to change whatever plans I make. So I live my life in impulsive moments, not with any consistency. I’m coming up on four cycles. Most people have about six. The most they’ve ever done is ten.

That’s the easy part, though. I’ve been through cancer treatment before. I’ve gotten used to a body with capricious limitations. What’s hard is being so dependent on people. Cancer, ironically, put me through the fire that taught me not to be emotionally dependent and afraid. Now, though I feel well in the moment, I can’t do anything to economically support myself. (I’m going on disability in December, after the required six months have kicked in.) And I have an incredibly loving, present community that stretches far beyond my currently local life. But I have to trust that there will be people in my support system who not only love me enough to interrupt their own lives, but who are able to go south with me for a week, to be there for me emotionally while my body’s being put through the wringer, on two or three weeks’ notice. (I’m not allowed to go alone, even if I felt capable of it.) I don’t do the asking; A does, because I hate putting that kind of emotional urgency on my relationships. I get to a really toxic place of testing my friends’ love. I’ve never acted on it. I recognize it and shut it down. But I hate even having that occur to me.

A makes the trips with me, when she can. She’s coming next time. She uses her vacation time to go with me. She could negotiate for unpaid time—but not only would that stress her coworkers, but she wouldn’t be as able to support a friend who can’t support herself. It’s hard for both of us, when that comes up in conversation. I truly understand why she can’t go all the time. And she’d rather be with me, than send someone else. But this is the way it needs to be.
*****

That all came out this morning. Something else has surfaced, as the day has gone on. I have a PET scan next Sunday afternoon. This will tell us whether my body is responding to chemotherapy. Has the tumor growth slowed, or stopped? Are there measurable changes?

I’ll have the irony of being blessed at church for my upcoming birthday (yes, this year I get blessed twice) on the same day I have a scan to see whether the current treatment helps the likelihood that I’ll live. I hold death in one hand and life in the other. I dance between them.

I’ve lived in this mystery since June. It doesn’t get easier. I want to live. I want the treatments to work. I want them to stop. I want to be in a trial at UCD or somewhere that my friends can actually visit me, can hold my hands and pray with me, love me and then go home. I want my life back. I can’t even imagine life after cancer.

I would rather hear my doctor in Riverside say, “It’s working,” than, “It isn’t.” But it gets so emotionally complicated. And I know that my will does not control my body’s response.

A friend wrote me a really wonderful e-mail while I was in the hospital last time. She wrote that she sees me resurrected, and she told me what that means. It was full of strong, powerful images. I got it and I loved it and I want that to be. I know it’s in the mix of her prayers for me—and I know she was responding to things she already sees. Inside myself, I see them too.

There are two ways to see myself: resurrected, and not here anymore. These are the only options. If I live, this is who I will be. This is how I’ve used this disease. This is the grace of God in the illness; this is who the fire has made me. This is the holy ground I stand on. (You stand here too; you just may not know it yet.) But can I live confidently in that strength? Will I trust my safety, even in the deepest unknowing?

If I am to plant my feet here, and to bring the exiles I love into the circle of the truest love there is, those answers are yes.

If the treatment works, it will most likely arrest the tumors where they are. I will always feel this pressure in my chest. I will touch the tumors on my rib and hip, feel them and wonder if they’re growing. Remission doesn’t come with a clock. It could be months, or decades. There’s no way of predicting. I could never have trouble again. I could reach to scratch an itch, feel a bump, and know.

How do you live with a time bomb in your body? That’s the wrong question. How could I ever truly live, if I were allowed to forget that I could die?

I know that the only true safety is when there’s nothing between me and the God who loves and liberates all of us. That is true exactly now. I say I’ll never know I’m clean again. That used to scare hell out of me. In the next breath I now say, thank God. I don’t want to go back to sleep.

I don’t want to die of this. I want to live well with it. The threat will fade, or it will kill me. It won’t go completely away. I won’t have the luxury of “after.”

Body and soul, reconnected

2010-09-04T19:34:00.000-07:00

I was Googling on Wednesday for a tune that was stuck in my head, and in my wanderings I found a Dances of Universal Peace circle in Sacramento that met Friday night. I used to do them back in Olympia, before I moved south for seminary. They were an important expression when I was searching, knew I didn't want to deal with the church and the patriarchy, but needed to be connected with God. I was involved with an interfaith circle up there for eleven years. My minister was really into them. She’s become a dance leader since.

I thought, you know I miss these. The cancer-body-dance connection (duh) didn't even occur to me. And I walked into the Quaker meeting house on 57th and H last night to check them out. The first thing we did was something in Arabic that meant, "taking refuge in God." I got that. And I was twirling around with people I’d never met, doing movements that are not at all part of the tradition I’m primarily committed to—and body and spirit found each other again. They just clicked back together, like they didn’t know why they’d been apart. It felt like coming home to a house I used to live in, and finding my clothes still in the closet.

I'm just not going to do Tai Chi. I don't have the discipline to seek that out and learn it. But I can do this. It's mostly Sufi and totally hippie—and it works for me. It's redemptive for my body, that's been assaulted so much and is under siege right now, and that needs a space to pray in. Standing/sitting/kneeling just never will get me there.

I’m not athletic. At rare points in my life, I’ve focused somewhat on care of my body: swimming in college because using the rec center was free, yoga when too many of my friends sang its praises, riding my bike because I have one and oh look, it’s Lent and I need a practice. But honestly, I’ve largely neglected my body. There’s no malice in that; it’s just happened because my interests were elsewhere. And now my body is being invaded by cancer cells, and again by chemotherapy which I’m cooperating in. I could almost hear it say, “Thank you; you remembered me!”

They did a dance for Quan Yin, who is something like a Buddhist Mother Mary. We were supposed to hold prayer in our hearts for whomever needed compassion. I was exhausted, so I sat on the floor in the center of the circle, almost underneath the dancers’ feet. I felt everything, and I held people I love who are in hugely difficult and emotional transitions. It was right.

When the owl flew across my path a year ago, one of the things that scared me was that I knew nothing of the Red Road. But I knew where that owl came from, and on a level beneath words I understood it. Was I being called away from everything I was committed to? No, I wasn’t then and I’m not now. These are not distractions. The Great Being That Matters gets the point. If God speaks to me in an owl that gives me shivers, or in the confluence of chant and movement, there we are. Jesus is always Jesus. I cling to the Resurrection like I always have. This all flows from the same Love. Forgotten parts of me are remembered, and they pray too. There are many ways of weeping and rejoicing.

Meeting Jesus

2010-08-31T10:47:00.000-07:00

Right now, all is calm on the disease front. I have a PET scan on the 12th, that I’m not anxious about. I’m recovering more quickly from chemo than I ever have. I’m free to think about other things.

A and I went to St. Bart’s again on Sunday. I wanted another Carol fix before she retires this weekend. I also wanted to thank the community for being the support that they are. I’m almost never there—but I know that they care about me. And I wasn’t up for driving yet, so both of us went.

I got an absolute love-bath. I stood up and said, I'm not here that often so I don't know what people remember, but I'm fighting cancer for the second time. Someone I don't know asked if they could lay hands on me. I said of course yes. So a bunch of people came up and did just that. Then A said my birthday's coming (two weeks away). Which was close enough to Carol's, that she prayed for both of us.

And I mean prayed. Cancer can’t hold a candle to that. I felt completely, utterly blessed.

A and I talked on the way home about what makes Carol different. We finally figured it out: she meets Jesus in people. We’re close now; we adore each other, and both of us know it. But she greeted me as warmly when I would have thought I was no more to her than the friend of an occasional visitor. You can watch her see Christ in you. The effect is that you know you matter. And I know I’m not the only human being, still taken by surprise at that idea.

People reflect God to me all the time. A friend once told me I “embodied welcome.” So I know I have a similar effect. But I have no clue what I do. In some ways that’s good; I don’t want to lose my head to it. But then, how do you practice a skill you don’t know you have? How do you get better at it, if you don’t know it exists?

I’m in a race with the disease. I know that if I win, I will be clergy. I’m more sure of that than I’ve ever been. I’m barely practicing the ministry right now that I got my bishop's permission to explore. But I know it is in me, and so does everyone who sees me do it. I know that people value this blog as a cancer ministry. It is, and that’s one reason I keep it. But I’m on a trajectory toward being a priest to homeless people. That’s what my heart wants more than anything. And that’s where I know I’ll end up, if I live long enough.

(Here’s where the magical thinking starts: that is so me that I have to do it. Therefore, I will. I will beat this, and I’ll live. I can’t let myself go there. But God knows I want to.)

Everyone needs to know that they matter. Seeing my effect on others as I was beginning to deal with cancer is one of the things that healed me. We all need to be seen. We all need love.

My people are those who get told a thousand times a day that they are nothing. They need welcome more than anyone else I know. They need to be told and shown that they count. They need to know that they matter to God, and to the people around them.

I don’t know what I’m already doing. It isn’t intentional. But I know I can do what I have seen and felt Carol do. I can purposely greet Jesus in everyone I see.

It needs to be conscious, until it is natural. And maybe even then. What would the world be like, if we all consciously greeted God in each other?

Update in the middle of chemo round #3

2010-08-23T22:13:00.000-07:00

If laughter could cure...Kirstin would be home now. She says that she's never been this calm during a treatment round, and that while chemo is awful, this is completely endurable.

The oncologist decided to keep her on same regimen, but do another PET scan a few weeks after this round (instead of waiting until after the 4th round), to get a better baseline for how fast the tumors are growing. They have grown - but not very much (2 mm was what I was told) - and not nearly enough for him to be worried. This is apparently not uncommon for this stage of treatment. Which is very reassuring.

And her companion for this treatment round, M-E, turns out to be a God-send. Not only is she wise, compassionate and comforting (which we knew ahead of time), but she also turns out to have a wickedly delightful sense of humor, and a previously unimagined ability to turn the worst vagaries of hospital life into hilarious song. As I said, if laughter could cure...

To all of you who care, and love, and pray...thank you, and thank you, and thank you.

Andee

Going quiet for about ten days

2010-08-18T11:04:00.000-07:00

Again, this is for people who aren't on my e-list. Thank you all for your presence and your prayers.

Dear all,

I fly down to Riverside tomorrow, and am scheduled to be admitted to Kaiser from Friday until the 25th. The calendar could change, with a possible change in regimens. I'll find out Friday morning if we're switching me to high-dose IL-2, and if there's a bed for me that day. (Sometimes you have to wait longer for ICU admission.) I'll find out when I start taking the treatment, whether I can tolerate it.

I know I can get through a cycle of biochemotherapy. But as you already know, there are questions about whether it's working for me. My doctor wants to discuss switching me up.

I know this about myself, regarding communication: I don't write while I'm having chemo. I'm too drugged and sick to even want to. And for the first few days I'm home, looking at the screen makes me more nauseous than I am. You are all welcome (encouraged! please!) to write to me--but I will reply in my heart before I do it with my words. And tomorrow is really going to be about having face time with the friend I'm going with and St. George's, soaking in life and love and everything that grounds me. I may not get to blogging or e-mail. (If I'm in the ICU starting Friday, I don't know what access I'll have.)

Keep storming heaven for me. Keep letting me know it. Know that your love helps carry me.

love,
Kirstin

Inventory, or how I really am

2010-08-15T22:25:00.000-07:00

Body
I have tumors in my chest wall that I’m sure are causing the pain there. It feels like I’m wearing a seatbelt, the way the pressure catches the right side. My left lung feels clear and fine. There could be any number of reasons why I’m coughing; I have tumors in my lungs (primarily right), and I live in California where everything grows.

I have a pain in the right side of my abdomen, not far from where the tumor was that re-ignited all of this. I know from reading my orders, which muscle is affected. There’s also soreness along the right side of my groin (possibly lymph nodes?), and a tumor on my right hip that sprouted the morning after I was discharged last time.

The tumor on one of my left ribs is still there. I’ve lost enough weight that it only slightly affects the way my bra fits me, so I think about it less.

I think I carry too much tension in my jaw; it’s been creaking and cracking.

The neuropathy in my hands and feet is slight just now; I have to consciously remember to take the meds they gave me for it. They tingle a bit; it’s like when you first notice that all of your extremities are asleep at once.

As of this morning in the shower, my hair is beginning to fall out. It could thin so slightly that no one notices. I could go completely bald. I’ll likely fall somewhere in the middle. Much of that depends on my treatment regimen; the chemo drugs are more suspect than immunotherapy alone. (Though my hair thinned on interferon; everyone thought it looked better.) I'm totally fine with the idea of looking the part.

I can’t stay asleep at night to save my neck. Sometimes I wake up anxious; sometimes grateful, sometimes I just wake up. And I stay awake for hours. So I’m tired all day, even if I nap.

And yet, I can still hike all over the Ranch. I’m here right now, preparing myself for the next round. I can't eat like a three-year-old here; I have to eat regular food. For the first couple days, I spent a lot of time under the plum tree. (I’ll eat fruit when I won’t touch anything else.) Now, I can eat almost normally. I just can't eat spicy foods.

Soul
I can have normal conversations—or what passes for normal when you know you hold death in one hand and life in the other. I can relax with my friends. LKT drove up today to visit me. We had a great time. There’s nothing normal about either the process or cancer. We talked exhaustively about both, and we laughed.

I researched clinical trials yesterday, for about half an hour. It did not creep me out.

I went for a hike last night, on a trail I know very well in the daytime. I had just talked on the phone with the friend who’s going to Riverside with me next week. I watched the stars and the sliver moon, and I thought about how safe I feel even though I’m apprehensive about side effects and whether the whole thing is working.

Most of my fear is leftover trauma from the first round. I know what to expect from biochemo now. If my doctor switches me to IL-2, my team will orient me as well as they can. They give me enough of the sedative now. I won’t get the nausea drug I reacted to so badly. I’m learning what my emotional needs are, and I can articulate them. I’ll be with someone I totally trust, haven’t seen in a year, and really want to have time with. She makes a point of telling me already, that it will be okay when the drugs don’t let me access myself. I have a community of friends there, who take the edge off the yuck of it all. I’ll be wrapped in love.

As I walked on the trail in the dark, I noticed that my flashlight was dimming. The next step I took, my feet felt the earth. I am still grounded. I am safe in me. I will be safe everywhere I go.

I met someone tonight, who is here with a group on retreat. She introduced herself, and asked if I work here. I did what I usually do with strangers: told her that I used to work here off-and-on; now I have medical issues so I’m up here just being. (I do still function sometimes as staff; I’ll be hosting tomorrow. I need to give back while I can.) Something in her reply made me tell her the truth. I said that I have to go to Riverside next week for chemo, and I’m here preparing. I explained that Kaiser sends everybody with kidney cancer or metastatic melanoma, which is what I have, to the specialist there.

She told me that she’s had three different cancers. She’s uninsurable now. She finished her last chemotherapy five years ago. Without thinking, I raised my fists, and looked strength into her eyes. She wished me well, and hugged me. As I walked away, I realized that we’d given each other solidarity. That happens all the time. And I’d given the same strength I willed her, to myself.

As for entering the process while I’m dealing with cancer: I have a mental image of a tightrope, but I’m not falling off. It’s not fraught with any actual danger. I won’t lose my balance. This is where I walk now. The message I got on Thursday carries me:

You could die. Affirm your life.

I have cancer. I am human. I am me. I will be me, as long as I have breath.

Alive

2010-08-14T08:21:00.000-07:00

Thursday morning, I got the e-mail telling me that we’re not sure the treatment is working.

Thursday afternoon, my priest and I met with the bishop, and I got the go-ahead to start the Process (tm) here.

Episcopalians know what that means. It’s code for "discernment"; it's the first step toward ordination. All I want to do is take the sacraments to the river. I choose to seek the church’s blessing, and I just may get it.

You take your Yeses as they come.

My bishop knew from Facebook that I’m in chemo. Of course he asked about my health. I wondered if it might be an impediment. It wasn’t. He was compassionate, not paternalistic. The feeling I got was, if I’m willing to risk jumping into the process, with the understanding of time that I have, he’s willing to support me.

I’ve written this post in my head a hundred times. I’m still not at terms with what I’m feeling. I don’t know how to describe the space between medical worry and affirmation of call. Joy, relief, sadness, and a fierce, fierce hope.

I’ve known for two and a half years that all I really know I have is now. I am still fully alive, and fully called into life. You embrace life as long and as well as you can.

Treatment update-unclear news

2010-08-12T11:53:00.000-07:00

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

Hi all,

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

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

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

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

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

Kirstin

The gift in the illness

2010-08-12T04:34:00.000-07:00

is waking up to love.

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

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

Gifts

2010-08-11T17:48:00.000-07:00

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

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

But I rejoice in all these many gifts:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Because I love this song

2010-08-07T19:07:00.000-07:00

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

Safe harbors

2010-08-07T10:40:00.000-07:00

I realized yesterday, I am completely surrounded by safe harbors. I have a safe home. Incredibly loving, generous friends. People who are more than willing to drop their own lives for a week to walk into hell with me. (Ranging from my housemate and friends who feel like family, to one who offered to go with me to chemotherapy after meeting me at the Ranch once.) A church I love, and others that are also homes. A refuge I can go to whenever I want. Good work I can come back to, where I am a safe harbor for others. My God, myself, my community.

I’m still struck by a line from last Sunday’s sermon. She said that the idea of the reign of God was for all of us to be together, "everybody safe and playful.” A and I looked at each other and smiled. The idea was so Carol. And so right.

We are so loved.

I have a killer growing inside my body. I have a PET scan tomorrow that will tell us whether it’s responding to the biochemotherapy that leaves me still feeling sick weeks after it’s done. Results of this scan will tell my doctor whether to keep me on the same treatment regimen, or give me high-dose IL-2. The side effects are different. I’d be in the ICU. PET scans take some time to interpret. It’s possible, though not their ideal or mine, that I might not understand what I’m in for until we’re back down there. And I won’t really know, until I’ve experienced it.

I am surrounded by compassionate, competent caregivers in the hospital, and friends who love me. It is the one place I don’t feel safe. We fight this disease in my body. The chemicals course through my veins, and do what they do. I can’t control how the drugs affect me, how I feel, or how my body responds. All I can do is allow it to happen, and let my people love me through it.

I’m not sure of the point I’m making. There’s some connection between coming from as much safety and love as I live in, and going to the place that keeps me awake nights. My next trip is almost two weeks away. I’m going with someone who has been a gift since the day I met her. She loves me, and she’s up for this. I trust her, I trust my Riverside friends, and I trust my care team. I know that I’ve done this twice, already faced the completely unknown once, and can do it again. I know I can do what I already know, if that’s where they keep me. I already know to expect some things as IL-2 reactions, because I’ve had them on the low dose. Still, I’m already afraid.

I can’t find the point I’m reaching for. Maybe I’ll have to be on the other side of fear to articulate it. What I can do, is be grateful for all who hold me in love. For all who keep me as safe, everywhere I go, as I am.

You know who you are. I love you.

Healing

2010-08-05T05:12:00.000-07:00

A and I went to Livermore on Sunday. We hadn’t been to St. Bart’s in ages. The rector is retiring, and she’s a friend to both of us. I hadn’t seen Carol in way too long. She’s just good people. Loves me utterly, and made damn sure I know it. It was really healing to have that time.

She said something to me two years ago, that’s been whirring around in my head again. I was starting interferon the next day. I was scared. She was the right person at the right time. She said,

“God will either heal you, or change your heart so you don’t need it any more.”

I’m noticing, that I haven’t been asking. I’ve been aware of the presence of healing. Thankful for it. But I haven’t said, “Look, I don’t know if I’m dealing with this at all well, and I’m really not happy about any of it. Can you just come and hang out with me?” Let alone, “I don’t believe you’re a pharmacist, but I really don’t want to die.” I need to say these things. I need to be honest about them.

I think I’ve gotten too busy scrapping through this. Not only do I not have to do that, but I can’t keep it up all the time. I need to remember that it’s not just me, my care team, and my community in this struggle. God is in here too. God feels exactly as you or I would feel, if someone we loved more than life were this sick. God doesn’t come at disease with a scalpel. (God alone knows why.) God comes to us with love. Love sets us free to be who we really are.

There are times for fighting through, and times for remembering how loved we are. It’s okay for me to be honest about what I need and what I want. It’s okay to ask for whatever these things are. It’s okay to ask for wholeness; it’s okay to ask for life. It’s okay to ask for time.

I believe as I always have, that the medical aspects of this are up to my doctors and my body. I won’t be singled out to be cured. I also know that it’s okay to say, “God, please. Help me.” If that help comes in the form of clarity or love, that is healing.

Healing is so much more than cure. Cure is the cessation of disease. Healing is becoming who we are. In all the ways we can think of, and in every way unimaginable. I did not know before I was diagnosed two years and three months ago, that I would be who I am right now. I continue on that course. I believe this with everything I am: love makes real. And real is what we want. Real is where we are going. Real is absolute fearlessness; not defiance, but living in truth. Real is communion with ourselves, each other, and God. Real is love out loud.

Real requires the dropping of boundaries. Becoming demands that I say, “God, I have no idea how to do this. I know that you are with me. Show me how to walk through this. Show me how to be whole.”

That, I know, God will.

We interrupt this blog for a brief commercial announcement...

2010-08-03T21:40:00.000-07:00

Spaghetti Feed Fundraiser "to benefit the care, treatment and general well-being of our dear friend Kirstin Paisley" who is battling cancer will be held Sat. Aug. 21st in Sacramento, CA. Donations can also be sent by mailing checks made out to Kirstin Paisley c/o Safe Ground Sacramento, Attn. Event Coordinator, P.O. Box 1644, Sacramento, CA 95812.

My apologies for this interruption. Regularly scheduled programming will resume shortly.
Love,
Andee (aka A, aka Kirstin's roommate)

Dark corners

2010-08-01T15:43:00.000-07:00

I’m home, recovering from round 2. I’ve been home since Wednesday, I think. I’m less queasy, though I still don’t want to be around food much. I still get really tired, though it’s difficult to sleep during the day (and if I do, I don’t sleep as well at night). I don’t have much energy. A says I’m better by the day, but I still feel like crap. And I’m tired of being sick so much of the time.

It’s like I’m in a room, with no particular furniture. The closet door is open, and it’s leaking darkness all over the walls and floor. When I’m quiet, and alone, I don’t want to think about anything. That darkness is what’s there. I don’t want to talk about it with A, because it makes us both sad. But I need to write it out so I can maybe let go of it.

I’m not depressed, or I don’t recognize it as such. I don’t know whether my body is responding to chemotherapy. I threw another tumor the day I was discharged. It’s maybe as big around as a dime, on my hip. These things seem to sprout fully formed from some kind of hydra’s head. The one on my shoulder seems to have shrunk, a lot. The others, I don’t know. And I don’t know what the deep ones—in my lungs, chest muscle, and bones—are doing. I’ll have a PET scan on the 8th. Riverside will get the results, and will either give me more of the same or change it up. I’m anxious on either account. The devil I know is awful enough. I want it to work, dammit. I want to go back to my life.

The nurse who runs the program in Riverside told me that if I had the same stage of some other form of cancer—breast, say—we couldn’t talk about the odds being as good as they are. 30% is still not good. I know the statistics. And I know I’m an individual. But I’m afraid.

I’m not afraid of the spiritual aspects of dying. I know God is with me. I’m afraid of the physical process. Will it hurt? Will I feel ever sicker, just be uncomfortable? I remember watching someone at St. Aidan’s go through pancreatic cancer. I didn’t see her die. I didn’t see her at all for the last three or so months of her life. But when I did see her, she was so thin it just looked painful. I’m dropping weight now, because I’m nauseous and don’t want to eat. It doesn’t hurt. I’m nowhere near emaciated. I know my appetite will come back in a week or so. But I wonder, will my good times in between treatments be less good? Will I forget what healthy felt like?

I know I could live. I certainly have friends who are praying for that. But I’m not counting on it. I still have the tightness in my chest, that I know is not stress. When I cough, I wonder whether it really is simple allergies.

I want to go where I’m going with my eyes open. But I also don’t want to go there at all. I want my life back. I don’t want to think about cancer, sickness, or dying. I want to be hanging out with homeless people, taking bread to the river. I want to be laughing with my friends. Even if I live, I will never be normal again.

I want to go to the Ranch. I miss my refuge. Weekends at home are fine, but it’s hard to be alone here during the week when I don’t feel well enough to go anywhere. I don’t have access to a car right now, but that might change in a week or so. Then I can break away for awhile. But I don’t want to take too much relatively healthy time away from A, either. I want for us to be able to enjoy what we have. We still play. We still laugh. We still have fun together. I want us to do that for as long as we can.

I have to fly back to Riverside on the 19th. I just plain don’t want to. I will, because I want to live. But I don’t want to be sick anymore.

I’m just so frigging tired of all of this.

Grace

2010-07-22T22:11:00.000-07:00

I’m ensconced in the hospital. I’m going to try not to type too much tonight, because my wrist hurts where my IV line is. (They couldn’t fit me in for a central line tonight; I’ll get that first thing tomorrow.)

The nurse came in, started my IV, and we got talking. We probably talked for twenty minutes. She is an oncology nurse (not all of them on my floor are), has been for seven years. She’s young, and startlingly competent. Right now, she’s looking up my paper chart and printing information about the neuropathy drug they’re discharging me with. (I have the beginnings of peripheral neuropathy, in both hands and feet. It’s scaring hell out of me.)

We talked about my care team here, in Sac, in Oakland. We talked about my support system. I told her some of the things I wrestle with—see how healthy I am, how can I be sick? She told me she thought I’d do well.

I asked her why. She said, “Because you’re so positive. When the mind gives up, the body follows.” I didn’t tell her how much I hate this.

I told her about the wind talking to me at the Ranch. I also told her I want to be alive. We talked on the level of, how does cancer change you? If you live, who are you? How does this make you be?

She got it. And I think now I get it more, too.

They upped my Ativan, another grace. It’s starting to take effect. I’m going to go to sleep now. Goodnight.

Love

2010-07-21T21:59:00.000-07:00

My friend S is with me this trip. He’s retired and doesn’t have to save up vacation time to be with me, so we flew down here in the middle of the day. We had time to have dinner with two of my friends from St. George’s. R and D had us over to D’s house, and they fed us with food and love.

We sat on the back porch, eating shrimp and tomatoes (with garlic and capers, yum), grilled chicken and zucchini, and salad. Dessert was grilled peaches and apricots, and homemade ice cream. We watched the finches in the yard, and we all just talked. We were outside. I wasn’t in a hospital gown; wasn’t tethered to an IV pole. I look and act as healthy as anyone’s ever seen me. I didn’t feel like a cancer patient. We all got to be together as human beings. We talked about church, what calls each of us, what we all do in the rest of our lives, retreats. Everything. We acted like old friends. We just got to be.

Two of their church friends brought us muffins for breakfast. They couldn’t stay for dinner, but they said they’d come visit me.

I called A and put her on speaker phone. I had to bring her to the party!

Cancer is hideous. But I get to meet the most amazing people. They know how rough this is on me—knew it before they met me—and their response is food and love.

They sent us home to the motel with leftovers, and a blanket for when I get cold. I feel ready for tomorrow.

They get it. This is how to do community. This is the reign of God.

Grief

2010-07-21T12:48:00.000-07:00

Finally, I’m able to cry. I don’t mean hysterical crying on the chemo ward. I mean, feeling my anxiety, fear (yes that too) and grief with my feet on the ground.

I’m in the Sacramento airport right now, en route to my second round of chemo. I know exactly what to expect. Last night, I finally let it go. I’d been stressing, triggered by something A does that she doesn’t mean the way I hear it. I finally figured it out, and I told her. I started crying, and she held me. She cried too. It was good for both of us, to finally get it out.

This is happening in my body. I have no answers for why my medical team does anything; I just have to trust them. I don’t control any of this—I can say stop, and have when I was miserable and hysterical. I don’t dare say that when I mean it. I don't want that taken truly seriously. I want too much to live.

I woke up this morning with a line from Pat Humphries’ “Walls and Windows” running in my head. I reached for my mp3 player, and listened to it again. And cried again. Here’s the line that got me:

“Did you sing your children lullabies, to calm their fears at night?”

I say I’m not afraid. Usually I mean it. I’m not consciously lying. I’m truly not afraid of death, though I don’t want it right now. I’m not existentially afraid of sickness or suffering. But this loss of control really gets me.

And the intermittent life. I feel well right now. I won’t Friday, and for at least the next two weeks. I will literally be sick half the time. And when I’m well, I can’t imagine that I am as sick as I am. No way do I have a potentially fatal illness. Look how alive I am. See what I can do.

Then I go back to Riverside, and back to the beginning. Back to doctors and drugs and bad reactions and side effects. Back to nurses waking me every two hours for a vitals check. Back to coming home completely washed out for a week. Back to the incontrovertible knowledge that yes, this is real. And I don’t know what the ending will be.

My body is either responding as we speak, or it isn’t. I won’t know that for weeks. The next time I come down will either be for more of the same, or an even tougher regimen. I have no way of knowing. And no way of controlling. All I can say is go or stop. I won’t stop this (before my doctors do) unless it becomes truly physically intolerable.

It’s the intermittentness of sickness and health, and the knowledge that I may or may not ever truly get better. My well times could be as good as they are right now, or less and less and less. We don’t know.

I want my life back. And I don’t know enough yet about when I’m well and when I’m sick, to snatch it. I just want this to be over. And I want to be healthy.

When I was diagnosed two years ago, survivors came out of the woodwork to support me. Now I know what they lived through. I am learning what they knew. I know why they were so strong, for someone just entering this struggle. I appreciate them even more, for choosing to be there for me.

I hate this. But I'm glad I finally feel it. I'm not sheltering myself anymore. I say I want to be whole. Grief and fear are part of wholeness. The only way I can do this is with my eyes and heart open.

I need to post this quickly; we’re boarding soon. Keep me in your prayers, everyone.

Getting ready

2010-07-20T11:50:00.000-07:00

I’ve got laundry going in the background. I need to pack for Riverside, when it’s done. I need to apply for Medi-Cal, and ask some friends if they wouldn’t mind checking in on me for the first couple days I’m home. Another friend is picking me up tomorrow morning, and we’re flying down for the next round of chemo. Before that starts, we’re having dinner with my new friends from St. George’s.

I’m writing this for myself, and publishing it anyway. These are things I hold onto when I’m well. These will sustain me when I’m in the hospital, and when I’m first home, feeling so sick I’ll wonder if I’ll ever be me again:

Listening to music I love
Forming words into sentences, paragraphs, truth
Bouncing around the house with unwilling cats
The feel of wind brushing my body
Grass underneath bare feet
Lying on the earth, as much full contact as possible with the ground
Being held in the arms of friends, soaking healing love into my skin
The smell of warm earth
Legs that walk where I want them to
Bengal Spice tea on foggy mornings
Praying Compline in the dark
“The Body of our Lord Jesus Christ, keep you in everlasting life.”
Being back in church, held in loving community
Knowing that I can preach again whenever I ask to
Knowing that I can walk back into Safe Ground and belong there, whenever I’m ready
Breathing in and out
Laughing
Singing loud on long car trips
Playing my guitar for the first time in forever, remembering how
Hugging trees
Real conversations that don’t have to do with my health
Recognizing, and rejoicing in, how alive I am right now

What things keep your feet on the earth?

Amen.

2010-07-18T10:45:00.000-07:00

Sean asked me if I'd been to the Cristo. I said not this week; I'm not in a crucifixion mood. He told me that the oak tree had split into three pieces. He mused in his way, whether that meant something.

It damn sure does. Here is your earthquake. This is your temple veil.

Take that, death!

Wind

2010-07-16T15:42:00.000-07:00

I went for a slow hike this morning. It wasn’t hot yet, unlike yesterday. I needed and wanted to be outside. But my legs, depleted already, were dragging. I would take a handful of steps and stop. I would just stand, or sit, and be, for no idea how long. And then walk a bit again. It was accidentally meditative.

I noticed the wind. I made my way down the hill as the fog burned off. There were lots of little breezes. Every so often, I felt a gentle coolness on my skin. The wind would brush me, and brush past me. I would smell the earth, and the sweet dry grass.

Every time I felt it, I thought, “This will carry you. The wind will carry your memory.”

I’m not romancing death. I’m not yet dying. I have a very serious, most often fatal illness, which is moving at an unpredictable speed. I feel sick from the treatment, but not yet from the cancer. I am very much alive, and I would rather stay here.

Still, that is how the wind struck me. And it was completely okay.

I found it.

2010-07-15T00:13:00.000-07:00

I spent most of the day reading old writings. I was looking for perspective, and strength, and I found them. As I was trying to go to bed just now, I came across an e-mail I’d written to my advisor over a year ago. As I was graduating, I wrote her this:

“I’m called to be a safe person in dangerous places.”

It was the second time in the day that I’d come across that sentence. When I first spoke it, I didn’t know if I was talking about the fields or the street. I hadn’t even thought of the river. I just knew I was sent to the edges.

It’s more than a notion. It still fits, completely right.

I can’t put my energy into homeless ministry right now. I’m a cancer patient. I need to focus on my health. As it is, I will be sick off and on for the foreseeable future. I don’t know if I will get better. I can work with Safe Ground when I'm emotionally and physically up to it, but I first need to take care of myself.

But I’ve known for two years that I have a ministry as someone living with cancer. I wonder... Can I take this presence into the hospital? Can I be that, even there? It’s too much to ask of myself, I know. I’ll be a sobbing, vomiting, miserable mess, when the side effects get to me.

But I wonder. If I can go into that place, with that intention, what can I do? What can God do, if I can be that open? And that calm?

Forgot to post some good news

2010-07-14T14:09:00.000-07:00

I was feeling so crappy in the hospital, I never got around to posting this.

We did an MRI in Riverside to rule out brain mets. It did. There are no detectable aliens growing in my brain.

I’m so relieved. One thing that works, you know? And it’s the thing that I count on most. I can communicate, think, feel, and perceive the way I always have. I won’t start having seizures or losing my balance anytime soon. We can put “brain bleed” on the list of things I’m less likely to die of.

I believe, loudly, that God doesn’t give or take diseases. I have cancer because the evolutionary process governing my melanocytes went wonky. God is with me in it; God emphatically did not give it to me. It’s not some ridiculous “trial” that I have to prove myself through.

At the same time, I can say, “I don’t have brain mets (thank you Jesus)!” I stop making sense, out here.

There’s some intelligent commentary on theodicy in that, but I don’t think I’m the one to make it. I will say that if you’re praying for a cure for me, you have my total sympathy. I can’t do it—but I’m glad that people are, even if I don’t think God works that way.

I got invited to help rescue baby oak trees. Think I'll go get dirty for awhile.

What is brave?

2010-07-14T05:35:00.000-07:00

People have been telling me for two years that I’m brave. Brave for looking cancer in the eye. Brave for injecting myself with interferon. Brave for choosing chemo. Brave for talking about this, at all.

I usually say, “You would do it if you had to.” They always look at me doubtfully. And I’m learning what an individual choice committing to chemo is. I heard it enough when I said no in the hospital: both, “Don’t give up,” and “It would be valid if you do.” My solution is to commit to one round at a time. Two if I can handle it: that’s the space between PET scans. If I’m going to put myself through this, it only makes sense to find out if it’s working.

What then, can I say that you would do? You would make the choices that are truest to yourself, when your life is in danger. Believe it. Trust yourself. Because I am no more special than my life has made me.

I just wrote yet another thank-you letter to one of my teachers. She’s no doubt used to it now; I do it every few months. She is very, very present in this whole cancer trip. She was there when I first was diagnosed, when I was still her student.

A year before that, I was in another of her classes. And I wasn’t doing my work. She called me in to talk to me about it. I was scared. I was scared of pretty much everything, back then. I remember two things that she said: she wanted me to learn to be tough, and I was too capable to not be getting my work done.

How I got to be the age I was before either I was told or it sunk in that I was valuable, I have no idea. What I think she was really doing—and I’ve finally gotten this, three years later—is teaching me to frame experience in a way that I choose. I knew how to be a victim. I did not know how to own my own life.

I recognized the teaching as important, even though I didn’t understand it. I worked it. She helped me, when I went back to her (frequently) with either a thank-you or a question. We got through, and I got through the experience.

Then I was diagnosed. And cancer taught me more about courage than my teacher ever intended to. She was with me through everything she could be. She is, now. That’s how I know that her teaching is true.

I learned very quickly to look cancer in the eye. I will tell you easily that I hate having it now. I’ll tell you in the same breath, cancer healed me. There is no question. I was so afraid of everything, before cancer taught me not to be. Fighting for my life the first time—even though I describe it now as “practiced denial”—gave me what I need to be where I am right now, on an equal footing with every other human being, afraid of no more than anyone else is, and in the places where it counts, a good deal less.

Example: I’m meeting with my bishop next month. I did the calendar math accurately, and I’ll be sufficiently past chemo to be able to sit up and speak coherently. (I’m nauseous a week out, but I can think past it. I’ll be two weeks out, then.) I also have every right to be nervous. And there is no fear in me. I will say to him, something very much like this: “I know. I know how sick I am, and I know that we have no idea if I have time to go through this process the normal way. I know that there are other things I could be doing with the time I do have. But this is what I want. I have no idea why your blessing matters to me. But it does.”

He’ll probably say, well, God go with you. If he tells me to wait until I’m well, I’ll tell him why that’s unrealistic. That’s the only hesitation I can imagine him having. He’ll give me qualified and considered permission to enter the process, and we’ll go from there. I’ll do as much as I can, being sick literally half the time—and that’s if the chemo works.

I have no guarantees. What I have in bright, big letters is NOW. And the fearlessness that I need to live here.

Yes, I can thank cancer for that. And I do. I have had the teachers I have needed, human and biochemical. I don’t believe that God gives disease. I know that I have what I need to go through it. I have a loving, supportive community, and I have a strong enough self. And I can say this from here, knowing full well that I haven’t suffered as much as I will: if this kills me or if I live, I will be whole.

Perspective, such as it is

2010-07-12T17:49:00.000-07:00

I’m going to the Bishop's Ranch tomorrow, staying until Sunday. I could probably extend that a bit if I want to, but have to fly back to Riverside on 7/21 to be admitted again 7/22.

The Ranch is the most healing place on the planet for me—not just the trees and the trails, but the people. It has been since I worked there, three summers ago. I feel the effects even before I go there. And I’ve been thinking about where I’ve been, and what chemo does to mind and body and being.

If I am to physically live, this has to work. It has a 30% chance of having any effect, from arresting to reversing the disease. If it works, most people get about six cycles, one week on and three weeks off. That’s six months of feeling unprintable, almost recovering, and feeling awful again. Plus probably about another six months I’ll need to recover from the onslaught of doing this to myself.

If biochemotherapy does not work, we go to high-dose interleukin-2. That can eradicate the disease completely—but will do so in 6-8% of people. It’s even harsher to be on, than the treatment I’m starting with.

If those don’t work, we go to clinical trials. The goal would be to further research for the benefit of people coming after me.

In either of the first two cases, I’ll have PET scans after every two admissions, to monitor if and how well the treatment is working. They won’t leave me to be sick in a vacuum. There will always be a point to it, or at least a goal that we can hope for.

Of course I want to live. But I scared a lot of people when I said from the hospital that I was just freaking done with this. That being sick without relief until you die is no way to live. That I just didn’t see any clear way to keep at it.

Fortunately, it’s like what I hear of childbirth. I don’t remember exactly how awful I felt. I remember not being able to stop crying, when the side effects of interferon (one of five drugs/chemicals I’m given) felt exactly as they had two years ago, and it hadn’t helped then. I am absolutely sure that I’ll feel that way again, and I can tell you what day it will start. I don’t know if I’ll handle it any more competently than I already did.

But I do know that I want to live. I know what the cost of choosing to live begins with, and can end with. And I know I can take this, one hospital admission at a time.

I’ve been home for five days, and am only slightly nauseous now. My arms and legs itch, the skin on my face is peeling, and my hair feels like it’s starting to go brittle. And I know I have the coming week to hike to my holy places, to try to catch the silent Benedictines in a giggle, and to spend time with people I really love.

It’s a choice I’ll have to make every day, in the moment, with and without chemicals flowing through a central line into my jugular vein. Right now, I know that tomorrow is worth it. And if I can have the same kind of Tuesday six months or a year from now, that will be worth it as well.

Putting it this way: I missed the Epiphany bonfire this past year. (I was probably helping host homeless people at my church, which is the other thing I’d rather be doing.) I want to go next year. The only way I can make it, is if I give these chemicals a chance.

My birthday is closer; it’s only in September. But the chances are high that I’ll be in the hospital, so I can’t make myself look forward to it. Distant things, past the likelihood I’ll be in treatment, I can look to.

I can do this while I’m mostly free of sickness. I’ll have to talk myself up to it again, week after next. The only way I can do this is, one admission at a time.

Surrounded by Angels

2010-07-03T23:33:00.000-07:00

We have been absolutely, positively, amazingly surrounded by angels.
The living, breathing human kind.

Even the bedbug on my neck the first morning (this is Andee writing) counts as an angel, because it got us—rapidly—out of a barely tolerable hotel into one which...well, more about that story later.

When K. found out that she was being sent to Riverside for treatment, 400 miles away from home, and especially when she was told that she would not be allowed to use her cell phone in the hospital, nor have internet access, she sent out a rapid SOS email. Some of you may have gotten it. Essentially it said, here’s what’s happening, I’m going to be isolated from my entire support community, if you are in or near Riverside, please come visit me in the hospital.

Among others, the email was sent to a sort of unofficial listserv for CDSP (seminary) alums. Where someone whom K. can’t even remember ever talking to (she was finishing her MA as Kirstin was entering the school) read it—and promptly forwarded it to friends at her former parish in Riverside.

Within minutes we were getting emails offering us transportation to and from airport, dinner on arrival, hospital visits, communion whenever we felt in need of its comfort and strength, assurance from someone who had been in Kaiser Riverside a few months earlier that K. would indeed be able to use her cell phone, offer of loan of the rector’s Sprint aircard so K. could access the internet from within the hospital. Love. Pure, unadulterated, unconditional love.

The team from St. George’s Episcopal showed up at the hospital the night of Kirstin’s admission with a huge gift basket of edible goodies. They then disappeared for a few minutes – and came back with a huge icechest and various containers, and proceeded to produce an entire feast. Fajitas, roasted potatoes, roasted red bell peppers, hot and fresh off the barbeque, with all the fixings. Phyllo dough pastries, with cheesecake, lemon curd, and two kinds of chocolate mousse. Not to mention the option of fresh blueberries. Home-baked cookies for the medical staff. Offers of anything and everything we could need. The staff couldn’t believe we’d never met these people before, because we were all having such a good time!

We asked if K. might borrow a warmer blanket—three appeared the next day. They washed our clothes to make sure none of the aforesaid bedbug’s cousins come home with us. They’ve supplied paper towels and tupperware and other essentials so I could set up a semblence of housekeeping from my hotel room. We’ve been offered a house to stay in for any other visits this summer. They’ve visited every day, as comfortably as if we’d been friends all our lives.

Love. Pure, unadulterated, unconditional love.
It puts any hospital visits I’ve ever made to shame, and teaches me more about radical hospitality than I ever dreamed.

Before Kirstin’s first procedure (putting in a central line Thurs. evening), the rector came and annointed her.

Today two other seminary friends (both now priests) came to the hospital, and we celebrated eucharist together. Love, laughter, faith, hope. “I am the true bread. Those who eat of me will never die.” It has a new meaning, this resurrection text, when proclaimed in the hospital, in the presence of someone who may be terminably ill, and yet is today so very much alive.

Love. Pure, unadulterated, unconditional love.
Christ’s love, holding us in the scary places, filling us. Believing us.

Then early this evening, I came back to the hotel briefly. Dropped in at the office to thank them for repairing something I had reported. The resident manager – he relocated here less than three weeks ago, asked how K. was doing. Really asked, not just a formality.

“We serve breakfast here every morning, free, good stuff, take anything you want and bring it to her in the hospital. The day you’re due to check out, if you need to stay later in the day, don’t worry, there won’t be any charge. This isn’t about money, this is about taking care of people. That’s what matters. When you come back down here, it doesn’t matter if you’re not staying in this hotel, here’s my card, my name, my phone number—if you need anything, just call me or my wife.”

Angels, as I said.
Lots and lots of angels.

Whatever happens, we have been surrounded with love.
Christ is with us; we have been fed.

So much better

2010-07-02T16:06:00.000-07:00

So. much. better.

It’s quarter to three in the morning, and I’m awake. I think my Ativan has worn off. The central line doesn’t hurt as much as it did when I went to bed. I’m feeling so much more peaceful. And I feel like it’s going to be okay.

If I can find a tactful way to do it, I’m going to offer to re-write the packet Robin sent me. It’s written as if being here at all is contingent on one treatment working in the first two tries. That isn’t so.

We had a three-hour consultation yesterday. First one of the nurses, then Dr. Gailani, then the pharmacist and then the social worker. Dr. Gailani gave us better odds—still not great, but better. And explained to us how it really works: they’re starting me on biochemotherapy (interleukin, interferon, three chemo drugs that I remember). I’ll do that now and after the second week home, I’ll do it again. Three weeks after that, I’ll have a PET to see if my body is responding. If it is, we keep at it, every fourth week. If not, we go to high-dose IL-2. I’ll try that twice (same schedule). If that works, we keep at it. If that doesn’t work either, we start me on trials.

The odds aren’t great for anything—but they’re better than the information we had. And there is always something else in the toolbox.

Dr. G was great. He asked what I know about metastatic melanoma. I said, I’m sure you could tell me something I don’t know. He was sure he could (the man is famous in this field), but started at the beginning, and gave me whatever information I could assimilate. He told me where the disease is in me: lungs, lymph nodes between the lungs, muscle in that area (which likely explains the chest pains I’ve been having; they don’t feel cardiac). Bones, and subcutaneous tissue. We’re going to do an MRI to rule out brain mets—but I don’t have any symptoms of those.

He said if we could put me in full remission, great—if we keep me as asymptomatic as possible, that’s success too. Median survival rates don’t relate to individuals. We don’t know where I’ll be, until we pull out the toolbox and see what works on me.

We’re looking at anywhere between 6 months and a year and a half of treatment. Which means, there are options until there won’t be anymore. He will tell us when and if it’s time to stop and let me live fully whatever time I still have.

I’m getting tired and want more rest. I’ll write later about the amazing people of St. George’s.

Anxious

2010-07-01T05:06:00.000-07:00

It’s not that I’m nervous—it’s that my nerves have been shot for the past month. I am SO ready to get this over with.

What really did me in: I was going through the packet that Kaiser sent me yesterday, looking for the packing list to make sure I didn’t forget anything. I came across the treatment protocol, and I read it again.

I had thought I’d be one week on, two weeks off, one week on, three weeks off, and one week on again before my PET scan. No. I’ll have the PET after those three weeks, and readmission is contingent on the results. (I must have misunderstood her over the phone.)

It feels like my body now has two chances to get it right—not three. I know that isn’t rational. We can tell them I feel like I’ve been sprouting tumors like weeds, and my last PET was... just about three weeks ago. (Dang. Feels like forever.) They’ll have their ways of measuring. This will be enough to tell them whether or not my body responds. Or it won’t, and they can take my new weed garden into account. These people understand this stuff better than I do.

It isn’t a performance test. I can’t pressure my body into complying—and I wouldn’t want to treat my body that way, anyway. It’s just that I didn’t realize until I came across that paper, how desperately I want this to work.

I can tell you that I have no idea how I’d emotionally reconcile being given my life back. How do you re-enter the world, after this? But I know that I could, given the support I already have, and time. And I damn well want to.

I can want it more than I’ve ever wanted anything—and I can’t control whether it happens. I can’t dictate my body’s response. Either this treatment will work, or it will work partially, or it won’t work at all. It isn’t my body’s fault, if it doesn’t.

I need to step back, relax as much as I can, and love my body through this. And I want to. I’m not angry with it anymore. My body has been besieged, I know that, and I’m about to besiege it more by making it sick in the name of reovering health. My poor cells won’t know what hit them. And it isn’t their fault.

I’ve never been plagued by a health problem that impeded me, before I first met cancer two years ago. I have a little bit of asthma, but it mostly acts up if I’m sick or have been around smoke. I know how to take care of it. (I was fine three days after last Easter Vigil.) I don’t think about my body, when I’m well. I’ve never been in the least bit athletic—but my body has always been able to do what I’ve asked it to do. There is nowhere I can’t go, on my own two legs.

IL-2 is really the best thing out there for melanoma at the stage I have it, when it works. It works very well, for rare and lucky people. So either this will work, and I’ll go back to the life I had, or it won’t—and I’ll never be really well again.

I feel well now, except for odd pains that are mostly ignorable, and are either cancer or stress most likely. I don’t want to get sick. I don’t want to hurt more, in more places. I don’t want to watch myself lose my physical and mental abilities. I don’t want to die.

These are all very likely possibilities. And I can’t wrap my head around them. I am so alive now—I can’t imagine dying. Even when I was sick for a year on interferon (longer, counting recovery time), there was a me that wanted to get out from inside the shell of headaches and bone-weary fatigue. I was sick, exhausted, miserable—and I was alive. I could walk around the Tenderloin at 1 a.m., hanging out in drag bars with my field ed supervisor. I could enjoy the activities I was involved in. I could laugh with my friends.

Until the past two years, I had always felt well. I don’t want to never be well again. If this doesn’t work, there are other drugs that may shrink tumors—but that don’t increase life expectancy. (I have no idea how that works.) There is nothing else that eradicates the disease. If this doesn’t work, the next step will be a clinical trial. Results of that would benefit people coming after me. That’s well and good; I have no problem with doing something for the good of others. But I am just not done. I still want to be alive.

And I can’t control what happens.

I can find a space within this. I know I will find peace. I have to. I’ve been committed from the beginning, to going where this takes me. But I had about six months, when I was recovered enough from treatment to feel like myself, and I could think I was done with cancer. All that time, these tumors were growing inside me undetected.

I don’t know how I feel. There is no conscious betrayal. My melanocytes went crazy because evolution hasn’t told them properly how to turn off reproduction. Sometimes they don’t shut off; mine didn’t. There is no intent in that. My body never meant or wanted to be taken over. It didn’t collude in its own destruction. Cancer just happens.

I have nothing to get angry at. And love will heal—but it does not cure. Here I just am, until something destroys the disease or it does not.

I am used to the circumstances of my life being dictated by my choices. I have made all the right choices, in this—even before I knew it, when my enrollment in grad school meant I had to carry health insurance (therefore I had the chance to). I wore hats before I was diagnosed, and sunblock in the summer—not every day of the world, as now, but with the level of consciousness I had.

I’ve done everything right. And I still got sick. I can’t blame myself, because I haven’t done anything wrong. I can’t be angry with my body, because bodies are hard-wired for health, and it did the best it possibly could. I can’t be angry with the disease, because it was no more than an evolutionary process that got out of control.

There is no intent anywhere. And I am losing control for ever. That’s what is really hard.

I’ve been sick from cancer treatment before. I know I can do it again, as long as my body can physically tolerate it. I don’t like it, but that’s not why I’m anxious. I am anxious because so much is being taken—and I may not ever get it back.

I’ll have a blood draw this morning, and consultation with the doctor. They’ll admit me later when there’s a bed free. Tomorrow morning, treatment starts.

I’ll give the nurse my arm; she’ll find a vein and start the IV—and there will be no getting off this bus, ever again. Six percent of people get to have a full remission. I don’t dare to really hope I’ll be in that group. (Margaret, I remember your note. Thank you.) I will never not be looking over my shoulder—literally, as there’s a palpable tumor on the right one—ever again. This is not the life I chose. But it is mine.

And I have to find a way to really live, this life that I have now.

In Riverside

2010-06-30T22:14:00.000-07:00

We're at a hotel a block or so from Kaiser. Eating sushi that was fresh several hours ago. Exhausted and anxious, but okay. And feeling embraced by the people of St. George's, Riverside, who haven't even met us yet.

More as either of us can. Blood draw in the morning, consultation at 10, and we go from there.

Beginning to land

2010-06-29T05:41:00.000-07:00

Gently, though. It’s really okay.

I’m going to say something that might disturb some people. I don’t know. People tell me to fight like hell, and they’re right, and I do things that fit that description. I ask everyone who’s breathing to pray for me. (Community support is really, really big.) I’m going down to Riverside tomorrow so I can be admitted on Thursday, to get my body pumped full of chemicals that will make me feel unprintable so I can have a shot at getting rid of cancer. I’d rather not have to do that, but I’m going willingly.

I know what the odds of it working are. This treatment works very well for a very small percentage of people. And I’d rather be happily surprised if it works, than crushed if it doesn’t. So I’m not holding on to anything, even hope.

Do I hope it works? Of course. But I’m not investing my emotional energy in that possibility. A friend who’s an oncology nurse was telling me something to the effect that the mind and the emotions have an effect on the body’s ability to fight cancer. What she said makes sense. But I’m not in that rah-rah-warrior place. I have my sword out. But I’m curiously calm about it.

I already was more than hopeful, once. I was sure that interferon was working, and had worked. We had every reason to think I was clean. And I so wasn’t—I had this crap growing in me, even as we were attempting to prevent the possibility of it ever coming back. It didn’t spread through my palpable, detectable lymph nodes. It snuck in through my bloodstream.

I already didn’t respond to one treatment, which I fervently hoped and wanted to respond to. I know I have no control over my body’s (or the cancer cells’) response to this round either. A is hopeful, because that’s her way of coping. I’d rather be happy than devastated. So I’m more reserved, emotionally, than I ever am. That’s probably part of why I’m still so much in my head about everything.

All I did at the Ranch was walk and write. I am so grateful for that time. I never had to look at my watch—I just responded to mealtime bells when I heard them. And I spent most evenings with the Swifts, just hanging out. It was so amazingly restorative. By the time I left, I was genuinely happy, back in my own skin, and I’d come to some measure of peace.

I had breakfast Sunday morning with Caroline, the director’s wife. She gave me a rock on my way out. It’s a triangular piece of serpentine, about as tall as the palm of my hand. It’s shaped like a mountain. She found it, hiking in the Sierras. And she wrote a blessing on it for me.

I will have a little altar of spiritual homes, when I’m 400 miles from mine. And even that can be holy. One of my priests is calling my hospital room a hermitage. She’s right, really. I am going places spiritually that I never would if I were well. There is life here, and water, and I will not be truly alone.

I had a dream Sunday morning. (I usually wake really early, am up for a couple hours, and go back to sleep.) I was having some kind of medical test to see if the treatment was working. I could see my organs on a TV monitor, with red dots that needed to be measured—those were the tumors. I woke up before I knew what the results were. And it was really okay.

I left the Ranch on Sunday so I could go to church in Sacramento. I always watch the procession going by. I looked up from my hymnal, and caught my priest’s eye. She gave me a look of such absolute love. Her eyes said, “You can do this.” I locked my eyes on hers as long as I could, just drinking it in.

Her metaphor in her sermon was “scary field trips.” I got up at the time people usually go forward with birthdays and thanksgivings, and said, “If this is a thanksgiving, it’s for my community and my health care team.” I told them all what was up, and asked them to come with me in prayer. I know they are. She did the summation prayer that they always do, thanking God for all of us, the gifts we bring, and the gifts given to us. And she prayed especially for me, that I would feel the community’s prayers with me. I already do.

I went back and sat down. My friend held me for awhile.

I put my faith in love and modern medicine. I know what’s in the medical toolbox to fight the cancer I have. I am trusting medical science because I have no choice. I don’t do the faith-healer thing. But the only thing that heals my soul is love. And I’m being bathed in that right now.

I went home after church. A and I hadn’t seen each other in several days. We ate lunch. I reached around and touched my right shoulder—I don’t remember why; I must have had an itch. And I found another tumor.

Here was the thought process: “Oh. I bet I know what that is. Wait, is there a bump on the other side? No, the left side feels normal. Hmm, definitely not a knotted muscle. Damn. It’s real, then.”

The tumor I found is not a friend—it’s an enemy alien. Its presence signals disease that can kill me. But the tumor is also part of me. Finding it was almost a reassurance: you’re not living in a dream world, your body really does throw these.

I know that whatever happens to my body, the intrinsic me will be really okay. I know that like I have never known it before. And so I am genuinely not afraid. This second tumor is just a confirmation: this is life now. I am living where many people don’t go. And I have time now, while I feel well, to stand here with my eyes open.

Two years and two months ago? Not on your life. I was so afraid of everything, before cancer put it all in perspective. I don’t like having cancer that’s resistant to treatment. I don’t want to watch myself get progressively sicker. I don’t want to die. But these clear eyes are a gift of the disease.

UPDATE: A read this over my shoulder. She was holding me, and found another tumor, on my rib. I touched it and it's definitely there. (It can explain why my bra has felt tight.) We both just said, "Damn." I wonder why these are all showing up now?

I'm really not angry with my body anymore. That prayer has been answered. Mostly I feel sad for it--I know my body really tried.

I still feel so ridiculously well. I'll start feeling sick probably Friday morning. (I'll be admitted Thursday afternoon.) I wonder if it's reasonable to ask... can I please have more time to feel healthy? If this doesn't work, can we stop it before the disease itself makes me miserable?

Communication snag

2010-06-26T21:27:00.000-07:00

I found out tonight that I won't have internet in the hospital next week. My e-mail address is in my profile. Send me your phone number (or Facebook me) if you want me to have it.

I probably will have A and a flash drive--so may be able to blog a bit, however awkwardly. She'll post updates for me if I can't.

More thoughts on resurrection

2010-06-25T16:04:00.000-07:00

I’ve been trying too hard. I was walking around this morning thinking, “Isaac, Lazarus, Jesus... what do I do with this?” The only way I know how to interpret anything that matters is story. It's the opposite of preaching. I’m not given a text and a week to prepare. I’m given my own being, as context and form to shape any way I want to. Sacred stories are stars to navigate by. They are the brightest lights I have.

I can’t preach resurrection with my body or my words. I haven’t died. One of the most perceptive people I know told me yesterday, how strong and grounded I was over the phone. She would know—and she wouldn’t tell me if it weren’t so. And she’s right. I haven’t been to the truly dark and terrifying places. I know how loved I am, and that love is lifting me up. I know whose strong shoulders carry the weight with me, and for me. I trust them absolutely.

Love is letting me stand in a place of total unknowing, and feel safe.

I have to give myself permission to wander down the paths I need to. I need to poke a stick into the spider webs. You can’t rise up, when you’re already standing here. It's an incongruous thing to do on a gorgeous, perfectly temperate summer day, but I have some time before dinner. I think I'm going to walk with all of this, after I post it.

I really don’t want to do chemotherapy. I don’t want to go 400 miles away from almost everyone I know, so I can have the privilege of throwing up everywhere. I’m doing it because, as another of my clergy says, “we’re hard-wired for life.” I couldn’t consider not doing this. I am so damn grateful that I have health insurance. My oncologist is a tiger; that’s why I trust him.

I don’t know what I would do if I were given my life back. If, after my third admission, they tell me it’s working—I have no idea how I would hear that. Maybe I need to feel it in my body before I can imagine that reprieve. I don’t know. I’m not even wondering how to be normal—I have no idea how to take that information and live. I don’t know if I’d be rejoicing or completely undone. I suspect, a whole lot of both.

And what if it doesn’t work? What if they tell me, we’re sorry, but you’re one of the majority whom this doesn’t help? The options after that are a clinical trial or palliative care. I’ve imagined that so many times, just to prepare for it. I can tell you easily that I’m not afraid of death. I’ve spent a lot of time thinking about it. I've been sick from cancer treatment before. But I’ve never been close to physically dying. I’ve never embodied that exact space. I haven’t heard the words spoken to me, “We can’t do any more to help you.” I keep them at an emotional distance.

It’s back to body wisdom again. I can only speak from what I know. And right now I know that I’m sleepy in the middle of the day, because I don’t get enough rest at night. The same spot on my chest still feels tender. I still get winded more easily than I remember. I still can’t tell if my chest feels tight because I’m stressed, or if I’m less able physically to breathe deeply. My doctor didn’t say it was a problem, so maybe it’s my perception. It just occurred to me, at 3:30 p.m., that I haven’t had a headache all day.

I need to let myself go to all the places I don't want to go. I need to let my emotions feel the fear my body shivers from. Then I can talk about it. I will know what it is to walk into death, and to live.

I need to let my body be my teacher, now. And even that thought is healing. I'm being asked to listen. I'm being given an approach to respect my body, not to hate it. I can't be angry at her, while I'm sitting at her feet.

Where my mind goes

2010-06-24T15:34:00.000-07:00

I went walking this morning, up around the peace pole, to the Cristo, into the trailside sanctuary. Just walking, thinking, possibly praying. Being.

I wish I could take a picture of the smell. Warm earth rising, grasses drying in the sun. Hawks flying low, looking for food. Life.

I’ve been thinking about what resurrection might mean to me now. I felt it in my body, when I stopped interferon and started feeling healthier, thinking I was clean. I still hold on to the love of that same God. I know that my God holds me. But I wonder. I may not have that same physical sense of recovery of life, ever again. With interleukin alone, I have a slight chance of full remission, a slightly less slight chance of arresting the disease, and a whole lot of possibility that I will not feel truly well again. (I don’t know the statistics with the cocktail, and I don’t know how my doctor will make this choice.) When I had a stage II, I could believe that it wouldn’t come back. I could believe that we’d caught it in time; that I’d had a terrible scare, but that I would get my life as I knew it back. I’ll never have that sureness again. It’s in my bones now, in my lungs. And I’m almost not even choosing how I process this information. I am compelled to look for meaning in it. And so I am.

My body may not recover. But I will not, cannot, let go of resurrection. So what does that open up to? I sense an explosion, in the most hopeful and loving possible meaning of that word. I don’t know where it will be.

A friend asked this morning, how she could pray for me. I put my faith in love and modern medicine. Pray that I can love my body through this. I know that if I am to live through this experience, I need to come through it whole.

I mentioned that my breathing is starting to concern me. I have no idea if that’s cancer, or I’m short of breath because I’ve had more exercise in the past four days than I have in recent memory. It could be either. But this feels like the edge. I feel better now than I will, possibly ever again. I start chemo in a week.

I’m not trying to be morbid. I’m not courting death. I want to live. But I’m also slowly getting used to the idea of carrying this illness around in my body. How will I feel, if and as it progresses? I am living; I am not dying. But I could die. I don’t want to be surprised. I don’t ask, why did God do this? God doesn’t go around giving and taking diseases. I ask all the time, what can I do with it? While I have the power to act on any choices at all, what can I do right now? Who can I be?

Something has been hurting, in or on my chest. I touched until I felt a localized pain. It isn’t generic tightness. I’m not sure how long I’ve had it. It could be left over from yesterday, when the tech who did my stress test had trouble finding my heart with the ultrasound dealie. (Once she found it, it beat strong.) That could have aggravated a pain that was already there. Or it could be anything.

You don’t typically ponder your aches. If my shin hurts, there’s probably a bruise there. I probably bonked it on the corner of the bed. Not a big deal. Now, when something could be anything or it could be cancer—I’m trying not to be all hypochondriac about it, but I can’t help watching.

Is this the disease, beginning to close in on me? Is this what it will feel like? Odd pains here and there, that don’t go away? Pain that will get bigger until I need medication to control it? Will I be so loopy on pain meds that I won’t be able to communicate well? How long will I be able to think and write like I can now?

I am very much alive. I’m hanging out on the edges of potentially lethal illness, looking over the cliff into the water. I’m not falling yet. I don’t want to die, and I’m willing to make myself hideously sick to prevent that. But death holds no fear for me.

I will remember the owl I saw last summer. I will be able to follow her, when it is that time.

Canticle of the Sun

2010-06-24T14:42:00.000-07:00

St. Francis of Assisi

Most high, all powerful, all good Lord! All praise is yours, all glory, all honor, and all blessing. To you, alone, Most High, do they belong. No mortal lips are worthy to pronounce your name.

Be praised, my Lord, through all your creatures, especially through my lord Brother Sun, who brings the day; and you give light through him. And he is beautiful and radiant in all his splendor! Of you, Most High, he bears the likeness.

Be praised, my Lord, through Sister Moon and the stars; in the heavens you have made them, precious and beautiful.

Be praised, my Lord, through Brothers Wind and Air, and clouds and storms, and all the weather, through which you give your creatures sustenance.

Be praised, My Lord, through Sister Water; she is very useful, and humble, and precious, and pure.

Be praised, my Lord, through Brother Fire, through whom you brighten the night. He is beautiful and cheerful, and powerful and strong.

Be praised, my Lord, through our sister Mother Earth, who feeds us and rules us, and produces various fruits with colored flowers and herbs.

Be praised, my Lord, through those who forgive for love of you; through those who endure sickness and trial. Happy those who endure in peace, for by you, Most High, they will be crowned.

Be praised, my Lord, through our Sister Bodily Death, from whose embrace no living person can escape. Woe to those who die in mortal sin! Happy those she finds doing your most holy will. The second death can do no harm to them.

Praise and bless my Lord, and give thanks, and serve him with great humility.

(Photo: Chapel window, The Bishop's Ranch, Healdsburg, CA. Taken by me.)

Surreality

2010-06-24T08:54:00.000-07:00

I woke up at 3:00 in the morning and started writing. That’s the way of things, these days. Even after an evening hike at the Ranch, and a glass of wine after dinner. I don’t have wireless where I’m staying (in the hermitage), so I’m posting this from the refectory after breakfast.

I’m in one of my favorite places. And I’m with some of my favorite people. The Ranch has always meant healing to me. Now, there’s a part of me that’s subtly desperate for exactly that. And I don’t even mean, physically.

Yesterday, I had a stress test at Kaiser to make sure I’m healthy enough to be poisoned. (I am.) I’d gotten a phone call while I was stuck in a traffic jam on the freeway; I checked the message when I got there. It was the nurse who runs the program in Riverside, giving me a date to start chemo. I’ll fly down on the 30th with A, have my consultation on the 1st at 10 a.m, and be admitted directly thereafter. I’ll be released on the 6th. A will pick me up (I won’t be allowed to leave alone), and we’ll fly home on the 7th. I’ll recover for two weeks, go back down for a week, recover at home for three, go back down. At the end of the third admission, I’ll have a PET scan to evaluate if and how it’s working. And we’ll go from there. (I have no idea yet what my options are, if it does not.)

I had my stress test, which checked out as normal. I called Riverside back, called A to give her that phone number, and called my priest to tell him I’d be late for our appointment.

The cathedral offices are upside-down right now, being recarpeted. So I called Brian again when I got there, and waited for him to show up. The operations manager’s wife is a breast cancer nurse in another health system. He asked how I was doing, and we talked for awhile. Brian picked me up and we walked to a lunch place in the neighborhood.

I was flipping through my notebook, looking for an open page. “Cancer, cancer, cancer, life. Here. I’m ready. Let’s go.”

He was the cheerleader I knew he’d be. It was the wildest conversation, doing math with the calendar and my treatment schedule, talking about when I could meet with the bishop and things I can do in the meantime—interspersed with incredulity that I, who look and act healthy, have this life-threatening illness. He never questioned my desire to take the sacraments to the river. He didn’t rub my face in the obviousness that we have no idea if I have time to do this the official, normal way. It was, “Okay, you want to enter the process. Here’s the usual timeline. Meeting with the bishop is the first step. When can we do that?” And I answered, “I think I’ll be home and feeling less sick... here.” If I guessed the wrong week, we can change it.

We finished our conversation. I went to REI, and then drove out to the Ranch. I got here at dinner. Opened the door, took two steps toward the staff table, and got hugged five times.

They are extended family, and they’ve always felt like that. We didn’t talk about cancer when the guests were around. I noticed right away how my own energy shifted inward, when people I didn’t know came to the table. (I’m not even necessarily hosting this week, which is new for me, and odd. It is completely my time.) But afterward, C took me walking with her old deaf dog. We pulled hitchikers (not people; plants with seedpods that stick to you). She alerted me to a robin's song. And she asked me questions, out of her own curiosity, that took me directly to the place I needed to speak from. How the cancer may have spread from two years ago, what I knew might happen from the first time I was diagnosed, how I’m feeling about it all now. Not in a probing into me kind of way; more like, “How does this happen?” I look and act deceptively well. Or I am deceptively ill. But I can do anything you can do, right now. And I’m aware that I feel better right now than I will, possibly ever. Sometimes I’ll notice that my breathing feels thick, and I wonder if it’s stress, me, or cancer. But that’s the only symptom I think I might have.

I still haven’t completely bought in to the fact that this is happening. If understanding facts intellectually, accepting that they apply to you, and not letting yourself feel the weight of them is denial, then denial is where I am. I’ve gotten great at dark humor. Not that I’m hiding there—it’s just the place I am.

I really don’t expect it to hit me emotionally until I’m in Riverside next week, away from everyone I know, with an IV drip in me, feeling like hell. Right now I’m completely in my head about it all.

I’ve been so angry with my body. But I think I might know why my body threw the tumor when it did. I think it was trying to signal me, while I still feel well. It may have been trying to tell me, “You have time right now. You don't know when you won't. Be alive.”

Back from the ocean

2010-06-22T08:51:00.000-07:00

Healing time. Mmmm.

The break, for me, was all about finding a loving relationship with my body. And I'm not sure I'm there. But I know where I'm going.

A and I have been trying not to feed each other's stress levels. We had agreed before we left, that we needed to take it easy on each other and make sure we both had time alone. It turned out to never be an issue. I walked; she sat. I came back and we watched dolphins together, laughing. We had a really great time, all weekend. We weren't in cancer-land. We were free for two days. The wind and the water seemed to wash it all away.

I have a life-threatening illness that is "refractory" to treatment. I feel well, so this is all exponentially mind-blowing. And as hard as this is, it is relatively easier on me. While I feel well, suffering is mostly an abstraction. Last night I read the biochemotherapy information packet that Kaiser Riverside sent me; it arrived while we were at the beach. I processed it purely intellectually. This is what I need to bring with me; these are possible side effects; these are the statistics related to its working. I don't expect it to hit me emotionally until I'm down there, alone, feeling like crap, with an IV in me that's dripping the best shot I have to survive this.

I can't imagine what it's like to be A right now. And I have no advice for close friends or family. But I am getting love and support from all corners; more than I can begin to respond to. All of it very deeply appreciated. She doesn't have the support that I do.

We are best friends, and housemates. We're not partners. Our lives are mostly in different church and civic communities. My friends are my friends; hers are hers. There is some crossover, but not really that much. And because we don't present together in most places, I'm not sure that people get how much we are together in this. How we talk all the time about how to get through this. How much she is doing, and will need to do, for me.

If you know both of us, please do NOT hear this as, "OMG, A needs a note." She assured me that she knows how to ask for what she needs, and she isn't ready to receive the attention I'm receiving anyway. She'll tell you what she wants. I bring this up to say, if you know someone who is facing a life-threatening illness, and it isn't immediately obvious who their primary support people are, ask them. Ask how you can be present not only for the person who is sick, but for the people who love them the most. If the answer is, "Wait until she asks you," that's okay. (The question itself--that awareness--counts.) And if you know someone who has a friend with cancer, be aware that this is very real to them.

I know it is easier to be me and be the one who is sick, than it would be for me to watch anyone I love go through this. I watch her watch me. To know that one of the closest people in your life is wrestling daily with God and life and death, to know that she is deceptively ill even as you watch her go about her day and not yet struggle with her breathing, and to know that you'll likely lose her before you're ready to... as I said, if one of us has to have metastatic melanoma, I'm glad it's me. I'd be an absolute irredeemable mess, if she were the one who was sick.

I get so many e-mails saying, "We love you; what can we do?" I know that's a totally open-ended question, and I know that "check in with A" is a perfectly good answer. It isn't what she needs yet, from friends of mine whom she doesn't know. I don't know what I myself need, other than the love you're already giving. We're learning as we go. Hold us both in prayer, is the best thing I can tell you.

*****

As I started out saying, the break for me was all about trying to love my body again. I'm not there yet--but I have a foothold. I took a walk yesterday, while A walked with her good friend (and former rector). Margaret had asked me to throw something into her beloved ocean. I walked, ankle-deep in the water, and I skipped rocks. I was thinking about her and Joel and Juan, how she is my older sister and she says I am her teacher now, how there's nothing to like about cancer but she found me because I was diagnosed (thank you MadPriest), how she kept reminding me to hold on to resurrection. How I still hold on to the love of God, but how I don't know what resurrection means now, fighting cancer for the second time. I had thought I was clean, but I wasn't. My body carries this. It is in me and part of me. Sister death will always be at my shadow.

I walked, and I skipped rocks. I watched a wave pull a clam shell into the water, skittering over the sand. The ocean drew its creature back into itself. And I didn't need to throw rocks anymore.

I stood still in the water, and I felt the waves rock me. I watched the dolphins swim and play and leap. And I knew what I needed to know.

When I walked out of the water, I couldn't stop saying thank you.

Threads

2010-06-19T18:43:00.000-07:00

Stress headache. Pretty near constant. And every time I get one, I think, "Okay... the doctor didn't say 'brain'..."

I mean, really. I don't want to be a textbook, "Oh, she's right at 'denial' on the grief scale." But my bones don't hurt. If I didn't know I had lung involvement, I wouldn't think about my breathing any more than a mild asthmatic with California allergies ever does. I can get up and move and do what I want to do.

I had time the other day with one of my priests and the Canon to the Ordinary. Kathleen and I had been talking for an hour, in the solarium at church. She needed to go to a meeting with Britt; I said I'd forgotten to eat lunch. (It was 3:30.) So she invited me along to Bernardo's. The three of us, and Kathleen's new dog, sat outside. It was a gorgeous day. I knew I was with enviable company, and I wanted to be with them. Britt knew how to be with me--curious, compassionate, asking questions about both the illness and the ministries I do. (I know she's an ally now, and I know she will be after this is over.) It was so normal--and it so wasn't.

I had only just begun to let myself feel my grief and frustration. I had just cried for the first time, talking with Kathleen. She completely gets it, supports me and is my ally--but the ally that I don't have is time. We'd been talking about the surreality of all of this, and I finally said, "If I wanted to bungee-jump off the Golden Gate, I would do it. I want to do what you can do. And the process takes time."

All I want to do is take the sacraments to the river and feed people. I've been encouraged to go outside the institution to do it. I know that I could, in a word, "just grab bread and go." I have the approval of the people I care about: the clergy who see me and know me, others who work with me and watch me on hosting nights, Safe Ground. I don't know why the church's blessing matters so much to me. I don't know why I want to serve this institution. But it does, and I do.

We're going to work with my treatment schedule, and get that process going. It takes years. I'm living with the absence of all guarantees. But for some reason, I have this desire and I can't shake it. I'm called to do this, in this way.

That may change. If I know I'm physically running out of time, or if the powers-that-be at the cathedral or the bishop tell me I'm too sick and need to wait until I'm well, I know I have an alternative. But for now, this process is what I'm called into.

That certainty palliates the grief a little. I need the bishop's permission, and I don't know how he'll feel about allowing me into rigorous community discernment while I'm exhausted, achy, and nauseous. But I couldn't be any clearer than I am. I already have one "yes" that matters. And I can be as articulate as any human ought to be, about why I need to do this. Why the homeless community needs me to do this.

A and I have a game. I'll ask over and over and over, ever more insistently, for an imaginary object. She'll come up with an imaginary location for it, out of reach. We were into it last night, laughing and being ridiculous, when I had to stop. I was putting my grief into this game. I want life, and time. She can't give them to me. My health care team will do their damnedest. We don't know how my body will respond to treatment.

I feel as well as you do. And I have a killer in my lungs and bones.

I mean, really. Hey God. You made the universe. What the fuck? Why give me this desire, if I don't have time to do it? Why is that the thing that focuses, when I need to put my energy into my health? You are everywhere in this, except in the cause of the illness because I can't imagine you giving it to me. So what do I do now? And don't you think you ought to tweak that evolution thing just a little bit? Cells are supposed to grow where they belong. Not everywhere.

I know that if I am to live through this, I need to come through it whole. Body, mind, spirit, soul. Purpose and process and being. Total integrity.

And I don't know how to stop being angry at my body. I know rationally, it didn't choose this. The cancer cells went bananas and invaded where they weren't supposed to. A body, given the idea of sentience, wants to be healthy and strong, and support the being who inhabits it. My body is as much a "victim" as I am.

I know I need to learn to love my body and support it. I can get as far as, "I'm sorry, bones, that I'm mad at you." And I stop there. I keep thinking, "Why the fuck did you let this in?"

I tortured myself for a year. And here I am, a breath short of a year later, with stage IV disease. I knew a recurrence was statistically possible. But I had not imagined it would ever be this rampant.

I look too well for this. I feel too well for this. And here I am.

My spiritual director suggested that I write a dialogue between my body and myself. Give my body a chance to speak, let it have a voice, tell me what it knows. I haven't tried that yet. Maybe I ought to, soon.

Frustration. Denial, at the same time as I hunger for information. Grief. A need to believe in the treatment, even as I don't trust my body as far as I could throw it. Here is where I am.

We're going to Santa Cruz tomorrow, until Monday. A's good friend is a priest in Aptos. He knows, and we'll visit there. I can't wait for space and wind and sand between my toes.

This description would not fit me.

2010-06-18T23:51:00.000-07:00

"I have veins you could hit with a harpoon from a door three blocks down."

Oh, wow, are the next several months going to be fun. More of the details as I know them; I won't have the consultation/be admitted until closer to the July 4 weekend. The hospital (Kaiser Riverside) is sending me a packet so I'll understand a bit better, as well.

Fly down to Riverside. Meet doctor, ask questions. Have everything explained to me. Be admitted that night, for close to a week. Fly home for two weeks. Back south for one. Home for three, back for one. Evaluate whether and how my body is responding to treatment. Keep at it, or try something else.

The rug has been slipping out from under me since April 25, 2008. But until three days ago, I at least had the illusion of threads.

I have to believe in this, or at least hope. The nurse who runs the program said that the most admissions they've ever done is ten. That was seven years ago, and the person is still alive.

Feeling it

2010-06-17T21:24:00.000-07:00

Oh, am I ever. I couldn't, and now I can't stop.

Too tired/sad/frustrated/exhausted/touched out/talked out to write much about it now. Soon.

Not feeling it yet

2010-06-17T10:29:00.000-07:00

But not because I can't--because I'm not letting myself. I don't really want to let myself go into that until probably tomorrow night, when I'll have time to.

I got the news yesterday, sometime between 11 and noon. Called A at work; she said she'd come home. Took a shower because I hadn't yet. Called a few others: teachers, clergy. I wanted them to know before I put it on Facebook, and I wanted to hear their voices.

A came home, already feeling it. I wasn't. We sat at the kitchen table and talked about practical details: giving her my passwords and that sort of thing. We both did our own thing for a bit, then we went to a local park that has a Japanese garden and a zoo. I wanted to walk barefoot. The garden was closed, so we walked around looking at monkeys and turtles for awhile.

We came home. She made dinner while I did Facebook and e-mail. I'm completely overwhelmed by the response my news has gotten. So. much. love. I'm not even letting myself feel that yet--I'm saving it for later, when I've begun to come to terms with this in my own self.

We made ourselves eat; neither of us wanted to. I don't feel this emotionally--or rather, I'm only beginning to. All of my anxiety is in my body.

We slept. I woke up before the alarm, looked at my inbox again, and IM'ed with Margaret until she had to go to work. We got up, forced ourselves through showers and breakfast. I rode with A to work so I could use the car today, and now I'm back home. I have a breathing test at Kaiser Sac at 1 this afternoon. Then I'm going to Trinity to find Kathleen. I asked her for time; no agenda, just wanting to connect. After that, I have an appointment with my spiritual director. Yesterday I wanted to talk to her about this. Today I don't.

I might or might not go back to Trinity afterward for dinner. Thursday dinners were my project and I organized them--I've just handed it off, because I can't do that responsibility and my own health now. Part of me wants the attention; knows they know, wants the love. Part of me isn't ready to face that much attention yet. I need to feel my own emotions first. It's not like when I went to the ordinations at Grace, loving my ordinand friends, needing hugs and knowing I'd get them. This is so much more serious. It's not, "You're probably clean; don't worry." It's, "I'm so sorry I had to tell you. You've got it in your bones, lungs, and several other places." I know exactly what my odds are. I know where we're at with treatment options. This is stage IV melanoma.

I'm still waiting for the doctor in Riverside to call me. I'm anxious about that too. I want some time to be healthy. I wonder if it's realistic to ask for July?

Of course I will fight. All my instincts say, cooperate with the doctors' best efforts. I would rather live than die. I also know that I don't control my body's response to treatment. If I had that power, I'd have been done a year ago. I know I'm in the fight of my life, and I'm present and willing to do what I need to. If I throw up six times a day, but the treatment's working, then I'll keep throwing up for the sake of survival. I also know that it could go either way, and that I am more likely to die than to live. I want to go where this takes me, with my eyes open.

I didn't ask for a cancer ministry. But I have it. And I want to do it well. I write for myself, in public--and I have an idea of the effect of these words. I go where this takes me, and I report from those places. I'm willing to do that as long as I'm able to.

But I don't want to be a movie of the week, you know? This isn't about some fake sappy heroism. If I survive this, living through it as transparently as I can, I will be so much better at everything. One of my teachers told me, "It's an awful way to get ministry skills. But you're getting them." She was right. Can I enter into pain without fear? Yes.

Mindful that I haven't talked to the doctor in Riverside. He may have other ideas. There may be reasons that I'm not eligible for IL-2. There may be other viable options (trials, etc). There may not be. I have no real idea where I'm going.

All I know is that I will never be alone again.

Did God have anything to do with me getting cancer? Fuck no. God would way rather me be hanging out with homeless people. But here I am, and here God is, and here are the people who love me.

I wrote that I almost hoped we'd find something; I wanted to see my body respond well to treatment. Part of me is shocked to the bone that we did find something. But I think I also knew, as soon as I felt that tumor inside me three weeks ago, that there would be more. And I think that my "almost hoping" was really, getting ready.

I have no idea where this is taking me. But I know that I can go there. It's easier, when it's your own self. I hurt more for the people who love me.

and here's the e-mail I just sent out...

2010-06-16T19:33:00.000-07:00

Dear all,

It isn't real to me yet; the friends I've told are stunned, and I don't even feel it. It's still a scientific puzzle.

My doctor called with my PET scan results. He was sure it would be clean; I look and feel well. I have metastases to my lungs, bones, and "several other places." Apparently they're small enough and diffuse enough so that they're not in my way yet; I can breathe as always, and I haven't had any fractures. They suspect that it spread through my bloodstream.

How can you have stage IV melanoma and feel fine? I don't know. But here I am.

My oncologist in Sac is referring me to a doctor at Kaiser Riverside for treatment; he says that interleukin-2 (immunotherapy requiring multiple hospital admissions, very effective on those for whom it works) is the best thing in the current toolbox for me, and that's where it's done. I haven't talked to the doctor in Riverside yet; I thought he'd call today. I'm hoping I can do the treatments in Sacramento so my friends can visit me.

That's all I know that's even remotely definite. My doctors are as shocked as I am.

I hate what this is doing to the people who love me. It hasn't caught up with me emotionally at all.

I know I'm in your prayers. Please keep holding me there.

Metastases

2010-06-16T18:29:00.000-07:00

"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

2010-06-14T23:34:00.000-07:00

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

2010-06-12T22:29:00.000-07:00

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

2010-06-10T13:47:00.000-07:00

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

2010-06-08T08:24:00.000-07:00

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.