Wednesday, March 09, 2011

Written on Ash Wednesday

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.

39 comments:

it's margaret said...

As the saying goes --there really are only two seasons in the church --Easter's coming, and Easter!

I hate Ash Wednesday --I always have. We have a Gospel that says, pray in private, but instead we gather for public prayer --a gospel that says don't put ashes on your head and look all mopey --and yet we do, --and then we pray in Christ's name for the forgiveness of our sins, which belies the fact that we are already forgiven --our sin thrown away as far as east is to west...

I don't do bull@$%&% well... and the Ash Wednesday liturgy is just that... --and you shouldn't waste your precious time with it.

I am glad you stayed away.
Keep saying those alleluias --love you.

Kay & Sarah said...

And I will live in hope with you. I say an alleluia every time I think of you and my prayers will continue. Sending you love and hugs.

Tad said...

This is a very beautiful and moving post. I don't know what to say other then your shining spirit is amazing.

I wanted to comment on this quote that touched me especially where you say "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?". That is so beautiful and I see this in my friend, Cassandra, who bravely struggles with Huntington's Disease as it robs her of her abilities to function and care for herself. She can't or cook safely or clean properly anymore and she struggles with simple tasks, even to keep her balance while walking. She is planning on going into a nursing home soon. She is 34. Your spirit reminds me of hers. Given an unfair burden to bear, but yet bears it with grace and beauty. Hugs and prayers for you and may Bright Blessings rain down upon you as you live each day :)

This is GreenFrog from NOTI BTW :)

Rev. Tracy said...

I was just gonna send you a message last night to ask how you were doing, but my computer got all stuck and then I forgot. Glad to get a sense of how things are. Yes, celebrate the resurrection every day. That *is* the reality we've been given!

I'm off to Ottawa tomorrow for a training. I return late night the 15th and then fly out the 16th evening to Namibia. You are in my prayers every day.

Kirkepiscatoid said...

Something else to consider--You have a whole Facebook and blog community who has been in on this from the get-go, as well as your live posse.

I still remember the cyber-service we had for Lee Davenport. It was one of the most emotionally moving things I've ever done. Personally,it helped me heal greatly from his tragic suicide, and I made at least a half dozen new Facebook friends from that encounter...and Lee is still remembered often, and mentioned often on Facebook.

There are so many communities who have been praying for you and living these days with you, and I am in awe of it all.

My prayers continue.

Kirkepiscatoid said...

P.S. If you're going to Fremont soon, you'll have to tell folks that we Kirksville folk love Johnnette+, our new vicar. She was living in Fremont before she moved here!

Betsy said...

Prayers for you for life in this very moment, and more life in each next moment.

Valerie said...

I was thinking of you and we didn't omit the alleluias during the Taize chants at service tonight.

Too long to describe how I got there, but with the ashes I told each person "Remember, God is turning toward you even as you are turning toward God."

Don't know why I feel moved to tell you that, but there it is.

Praying for you lots, and you're still on the board at NM too, of course.

Love,
Valerie

John Gallagher said...

Further up and further in, my friend!

Ann said...

Alleluya and remember you are stardust - always

Lynn said...

Kirstin,

When I was at Fairhaven in the late 70's, I took a class on Living and Dying taught by someone I got very close to who went to the Berkeley School of Divinity and wrote a book called To Die With Style. She wrote about how most people went through the dying process in the same way they live (chronic illness too). If you are feisty while living, you tend to be so in your dying as well. Kristin, your clear sense of self and the spiritual path you have followed over the last few years have left many of us in awe. We are learning much from you, and I know that I wonder if I would have even an ounce of the grace you do if was in a similar situation. I know miracles happen everyday. And with all my heart, I wish for you to be one of them. I already know your ability to so clearly share your love, openess and honesty through this journey is both a gift and a miracle itself. I am sorry to live 1,000 miles away.

Lynn said...

(The above is from Lynn Grotsky with your Olympia days. I assume you are hearing from so many that you were wondering who i was!

Kim Robey said...

Dear Kirsten-- I don't really know you personally-at least we have never met. I am face book friends with you. But i have a little sticky on my computer with a note that says--pray for Kirsten. Thank you for sharing your story and your life. I am learning a lot about bravery and courage!

Anonymous said...

Dear Kirsten, you bless us all with your honesty and courage in claiming the kairos of your life as it is.

A great cloud of witnesses (seen and unseen) stand with you, light within Light.

Deep grace, Dee

Ann said...

Dear friends of KIRSTIN -- I think it would be nice to spell her name correctly -- I don't know how she feels about it but I feel estranged when being addressed as Anne as my name is Ann (no e).

preacher1 said...

This is my first time to read your blog. It won't be the last. Although we don't know each other, we are sisters in Christ & I am adding you to my morning prayers. Live in Easter, my friend. It lasts longer than Lent. Sheila

Songbird said...

It's Thursday morning, and I'm praying for you today.

Kharma said...
This comment has been removed by the author.
SHC (also known as Gator) said...

"Walking in the presence of beauty—because it’s easy to find when that’s all you’re looking for."

That's the truth.

You are constantly in my thoughts.

Jane said...

Hello-I am new to your blog. Can't really remember how I found you last week--one thing always leads to another on the internet. But I have been so touched by your posts and now I'm vested in your journey. I speak Presbyterian (but an emerging edge of it)so your words are comfortqable and fun for me. May I ask one small favor? Could you get someone to keep us posted here on this blog if and when you aren't able to tell us yourself? I feel like you are a personal friend and want to journey with you.
Jane
www.JaneEls.com

Eileen said...

You are continually in my prayers, and I agree with what others have said - Easter is a far longer season than Lent. The purpose of Ash Wednesday is to remind us to live while we are living and you, my dear friend, are doing just that - no need for ashes for you, no need for reminders. You are a living reminder.

Holding you out into the light. I wish I had more to hold out, but it's all I've got...(((((((You)))))))

Lori K said...

Just wanted to share a little bit from a sermon I didn't hear yesterday because I didn't go to church:

See Lent as a gift to the heart. Look at Lent as a break, a forty-day Sabbath – a time of slowing down and being extra intentional about taking care of yourself.

See Lent as a time for rest, and prayer, and being with the ones you love.

See Lent as a time to take care of yourself: the health of your body, mind and spirit.

And see Lent as a time for shedding away that which gets in your way of seeing and touching God.

Lent should not be an ordeal, but a true gift to the heart. And we can do this one-day at a time, starting here, together, now.

Take time every day this Lent to look inside yourself. See again truly who you are, and whose you are, and who loves you unconditionally. Repent, a word that means “turn around,” and see what’s right in front of you.

And then look outside yourself: Look for the Christ in everyone you meet and in everything you do – and look for the Christ in even in the ashes.

gumbiecat said...

I've read your blog for a long time. I should have said hello sooner.
You are amazing.
My prayers go out to you.

Kirstin said...

Thank you all so very much for being here. The impact I have on my community is still overwhelming to me. Thank you all for commenting.

Margaret, yes, yes. Love you.

Kay and Sarah, thank you. Love and hugs, back.

Tad, thank you, and prayers for Cassandra too.

Tracy, have a wonderful time. :-)

Kirke, I didn't know Lee, but I remember that service. You can definitely do something online for me if you want to. (I think I'll be at the other church in Fremont; there are two.)

Thank you, Betsy.

Valerie, that's a wonderful twist on it. Thank you, and I love you too.

John, yes! It's good to see you here.

Ann, alleluya and thank you. I love you.

Lynn, I know who you are. If you and Lisa can come down here, you'd be welcome. Thank you for being in my life. :-)

Kim, thank you. And thank you for your presence on FB, too.

Thank you, Dee. The cloud of witnesses is all around me; in this thread and invisible. I'm so glad you all are here.

Sheila, thank you.

Thank you, Songbird.

Always, Satan's Sockpuppet. ;-)

Jane, you're welcome to journey here. My A has my login info; she blogged for me in the hospital when I couldn't, and she's comfortable doing that. Thank you for mentioning your concern.

((((Eileen))))

Lori, I love that. And I'm glad you're here. Thank you.

Thank you, Gumbiecat.

All of you amaze me. Thank you for being here. Love to everyone.

jw said...

I posted a long comment. "God" or Google crashed and lost it. Probably best. You are Christ's and Christ is God's. All shall be well. We are with you.

susankay said...

Kirstin -- I'm betting that it will be one amazing memorial service and I have to admit I hope it is long delayed -- or really just delayed the absolutely right period of time.

Grandmère Mimi said...

Dear Kirstin, my prayers for you continue - every day.

Love and blessings.

Kirstin said...

Thank you, Joel. Love to you.

Susankay, I hope it will be.

DeborahG said...

Kirstin, your ministry of clarity, honesty, and love keeps shining brighter and brighter. Whatever seems to happen in terms of living and dying, you are loved and your love enlightens many lives beyond (and of course including) your own.

JCF said...

Kirstin, just saying I'm here and praying.

I've been ping-ponging between you and (my Stage 4 Lung) friend Cathy. Both of you in that "thin place", me in awe and terror and awe and hope and awe and faith and awe and depression and awe and love and awe.

HOLY are you, on your path of holiness. HOLY is your Beginning-Right-Now Easter.

Holy.
Holy.
Holy.

ariadne said...

I love you, Wis. I just flashed on a moment shared with you in the produce aisle of the Co-op when you explained to me, matter-of-factly, that you were fasting for (I think) Ramadan. It was at that moment that I realized how important your spiritual life is to you, and it was a ponder to me. I'm so glad it's been so important to you for so long, and I love you for you, and for this.

Liza Stein said...

Dearest Kirstin,
You are an amazing and mighty woman. I am sending my love and prayers throughout these days. I love you my friend.
Love, Liza

Kirstin said...

Mimi, thank you--and thank you for posting prayers for me.

Thank you, Deborah. I need to call you--I want some you-time.

JCF, thank you for being here.

Ariadne, and Liza, I love you too.

Tad said...

Kirstin, Cassandra says thank you for the prayers and she put you on her prayer list as well:) I read several sections of your blog post to her, she thought the last part where you talk about knowing that life and breath are gifts and about beauty being easy to find when that's all you're looking for was really inspiring :)

Have a great weekend :)

susankay said...

Oh -- and Kirstin -- I should say that I am sure you will LOVE Fiddler. It's about a lot of stuff.

Anonymous said...

Kirstin,

Thank you for this beautiful reflection. I don't say it enough, but you are constantly in my thoughts and in my moments of beauty.

Calen

claire said...

I am not quite sure how you do it, becoming more and more beautiful, more and more precious all the time.

Blessings on your time, an instant at a time.

May Godde keep you in the love and warmth of Her hand, always.

Jane said...

Thank you for your priesthood and healing presence. Praying with you and A for healing, wholeness and the peace which passeth all understanding.

Beck said...

I love you, my sweet.