Monday, February 28, 2011

Starting radiation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


2Diva said...

I lift you up with all the strength this gravitational body of earth allows me; I cling to your written word, and as I close my eyes, I will my spirit across the Pacific to you, and hug your soul.

Clarity and awareness and humor and compassion and zeal. I will you all of these things.

Bless you, keep you, and holding you in my heart,

Ana said...

You've been on my list since we met, but God's been holding you in the palm of her hand since forever. Be here now, and the rest will take care of itself. You're really quite stunningly beautiful, and that won't change, no matter what. xoxo Ana

Kay & Sarah said...

You said in this post, "I know that God here." I, too, know that God is here. I know that God hears our longing for a reprieve. My prayers for you are continual and I send you my love.

There is that place deep inside that you will always be matter what.

kat said...

You are loved, and you are not alone. Praying, crying, lifting you up for the Spirit to intercede.

God is not capricious, but God is good. So we can pray for peace and light and healing, knowing that today and tomorrow and the other tomorrows, you are in God's hands. No question.

I am also praying for time to slow down. It can't hurt to ask.

Let me know how I can support you now, my friend. I can travel. And I still owe you a curl-up-and-hold-you.

I love you.

Rani said...

ah, kirstin... i wish i could be there for you. you've chosen to follow hope, and how can that be wrong?

much, much love to you and A.

PJ DeGenaro said...

I'm with you, Kirstin.

DeborahG said...

Loving you, loving God, praying for and with you.

SHC (also known as Gator) said...

For you, dear Kirstin, I'm hoping for more perfect "nows," and I'm grateful for your walk on the bridge and that you shared it with us.

it's margaret said...

More perfect nows... yes. I am reminded of T.S. Elliot's "Ash Wednesday" poem as I read your holy words... part VI of that poem:

Although I do not hope to turn again
Although I do not hope
Although I do not hope to turn

Wavering between the profit and the loss
In this brief transit where the dreams cross
The dreamcrossed twilight between birth and dying
(Bless me father) though I do not wish to wish these things
From the wide window towards the granite shore
The white sails still fly seaward, seaward flying
Unbroken wings

And the lost heart stiffens and rejoices
In the lost lilac and the lost sea voices
And the weak spirit quickens to rebel
For the bent golden-rod and the lost sea smell
Quickens to recover
The cry of quail and the whirling plover
And the blind eye creates
The empty forms between the ivory gates
And smell renews the salt savour of the sandy earth
This is the time of tension between dying and birth
The place of solitude where three dreams cross
Between blue rocks
But when the voices shaken from the yew-tree drift away
Let the other yew be shaken and reply.

Blessed sister, holy mother, spirit of the fountain, spirit of the garden,
Suffer us not to mock ourselves with falsehood
Teach us to care and not to care
Teach us to sit still
Even among these rocks,
Our peace in His will
And even among these rocks
Sister, mother
And spirit of the river, spirit of the sea,
Suffer me not to be separated

And let my cry come unto Thee.

Anonymous said...

Helping to carry light within Light.

Deep peace, Dee

Anonymous said...

God's grace be with you today and through every treatment, every day and every thought!

Thanks for sharing. These blogs should be created to a book!

Praying for you!

Amy D.

Anonymous said...

I am so moved by your clear writing and open heart. Thank you for sharing your beautiful essence. You are helping us all better understand this mystery of life.
God bless.

Pete Farr

Lindy said...

Yes... What PJ said. I'm cheering for you, and praying a little too. Sending love.

Sarah in deepest, darkest Lomellina said...

I think at this point, in my willingness to try anything that will work, I'll pray your way.

Rev Dr Mom said...

Holding you in prayer as you begin this next step on your journey...

Suzer said...

Praying, and sending all the love I can your way.

Lisa Fox said...

Oh, Kirstin. This one gets to me perhaps more than any you have written.
I think you're right: This writing is your ministry now, and I am grateful.
You remain in my prayers, and those of my parish.
Meanwhile, how about that Isaiah scripture on Sunday!, where God says, "See, I have inscribed you on the palms of my hands." That's your name in the palm of God's hands, Kirstin.

Grandmère Mimi said...

Kirstin, I pray with you. I pray for you. My church community prays for you.

Love and blessings.

Caminante said...

Sitting in a cafe in West Jerusalem, it is hard to formulate words so I won't try other than to say I read them in my heart and respond with my heart. xo

eileen said...

((((((You)))))) Prayers ascending and my love coming to you. As Lisa says, your name is inscribed on the palm of Gods hands.

The beauty of your truth is a shining heart-breaking beacon. Write on, and we'll read on, and if you become unable, we'll still be there holding you in the light and loving the presence of the gift of your words.

susankay said...

Kirstin -- like you, I am not comfortable with a capricious God. I am also a VERY Protestant Episcopalian so I think of my self as averse to saints and whatnot. But I should tell you that, one night 17 years ago, I found myself praying to Mary for my husband who had cancer. I couldn't tell you that I prayed for anything in particular -- I just prayed. And we had two more years together rather than the two months predicted by the "charts". And then he died. But we had those two years. And so I'll ask Mary for ... something.

Wormwood's Doxy said...

Right here with you...

Betsy said...

Prayers with you, prayers for you, prayers swirling in the Spirit around you.

Jane R said...


Margery said...

I pray that your fear will be lessened, that your whole self will feel wrapped in the love and concern of all the people who have responded to your story.
A friend, Pepper Marts, gave me this prayer and I give it to you:
"Prayers for Kirsten and those who care for her. May they accept the parallel graces of skill beyond their training, wisdom beyond their education and compassion beyond their inclination." You are in my prayers.

jw said...

We are all with you here in Richmond, even Witty, and this I know, cause he knows when we are carrying something. You are Grace. You are Joy. Indeed you are hope for folks like me. And from experience, I KNOW that those on the street with whom you share your life and prayers love you much, much more that you can imagine. And God listens to their prayers! Bless you.

Maggie said...

Kirstin, you don't know me, but I've been stopping by your blog for quite a while now. You are precious and irreplaceable. You write things like "...the city was sparkling, windows reflecting sky...." and I'm there. You always remind me that I love the world. I'm so grateful you got born, and I will always wish you moments of beauty and wholeness. And joy. Joy can sneak up on us.

Kimberly said...

Love surround you.
Hope buoy you.
Peace embrace you.
Light illuminate your path.

With you in prayer and thought, Kim D.

Mary Beth said...

The dogs and I walked prayer for you this evening.

TheCunningRunt said...

Kirstin, you don't know me. My name is Ralph, and I got here through Paul the Byzigenous Buddhapalian.

I lost my faith and gave up on religion over forty years ago; too many people talking the talk, but not enough walking the walk. I've spent the intervening years trying in vain to make sense of a world where people are unspeakably cruel and self serving.

That's only recently begun to change, due in large part to Paul's huge heart, great faith and boundless compassion.

I'm telling you this because you said that this writing is your ministry, and I want you to know that I'm writing this with tears streaming down my face, not tears of sorrow at having just met you as you turn to begin your journey into The Mystery, but tears of wonder at your grace and courage, of amazement at the beauty and love that radiates from you and your community of friends, and of gratitude to you for giving an old man a reason to pray again after all these years.

Thank you, Kirstin.

I expect that God is smiling on your ministry.

PastorJulie said...

Holding you in my prayers.

Songbird said...

Adding my prayers to all the others.

stinuksuk said...

On this Ash Wed. we are reminded that we are all mortal and finite. My prayers are with and for you that our Lord will hold your hand and walk with you each "now" of your journey.
Peace be with you.

catherine said...

holding you in my heart and prayers