Saturday, August 27, 2011

In Loving Remembrance - Kirstin's Memorial Service

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:

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:

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:  

"...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)

Saturday, July 09, 2011

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

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,

Friday, July 01, 2011

A new beginning (posted by Andee)

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.

Thursday, June 30, 2011

Turning Point (posted by Andee)

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

Friday, June 24, 2011

Trying things on

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!

Thursday, June 16, 2011

The right decision...

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.


Monday, May 30, 2011

Andee and Kirstin need help

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.


Wednesday, May 25, 2011

All this...

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.

Monday, May 23, 2011


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.

Sunday, May 22, 2011


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.

Sunday, May 08, 2011

Back on the seesaw

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.

Monday, April 25, 2011

Three years ago

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.

Thursday, April 21, 2011

Fear, hope, sickness, God, and me

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.

Saturday, April 02, 2011

Relay for Life

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.

Saturday, March 19, 2011

Still okay, still here

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.