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.


Finch said...

My dear, you have woven together some challenging threads: passion, struggle, faith, hope, death, and self. Your words will keep sinking in, but in this moment i want to say that you are loved, that we do pray for healing, that there might not be anything arbitrary behind healing, and you certainly have my permission to consider asking for it.

Threshold is such an apt word, and I think the Ranch is waiting to share something with you.

I love you!

Kirstin said...

I love you too.

Kirkepiscatoid said...

I just got finished doing our parish weekly e-news. There you are, right smack dab in the middle of our prayer list, in rural NE Missouri. It is an added bonus for me to be the weekly e-news editor, because every week, when I type your name, it is just one more prayer out of me. No ocean or mountains, but certainly those "green pastures" for lying down in!

Will Hocker said...


Thank you for this moving reflection on your journey. Yes. You do not sound afraid so much as sad. In my experience, sadness is what most of us feel as we look at a proximate dying. Loss feels palpable, sweet when dying is near enough to smell.

I too invite you to ask for healing. Prayer is best understood as naming our intention. Such naming our desire changes us. You going to celebrate the Easter Vigil at St. Gregory Nyssan Saturday. St. Gregory articulates quite clearly how linked is our desire to the Divine desire. I invite you into this seemingly more vulnerable place. If you allow yourself, you will indeed be transformed.

With love,
I remain yours in faith,

Kay & Sarah said...

My prayer is that you you find your safe space to ask what you need to ask of God. You are in my prayers and I hold you in my heart.

SHC aka Gator said...

You're still very definitely you. I am grateful for that.

it's margaret said...

you say you are avoiding Good Friday....

This is the best effing Good Friday sermon I have ever read.

You put new meaning in to "Good" on this Friday.

I love you.
Now --off I go to deal with Dead Jesus. Who also loved this life. And all of us.

brown said...

What Margaret said.

I totally get the not wanting to bargain or beg with God.

Whether you try or not, wish it or not, you are an inspiration. Your hope is an inspiration. Your spirit is like a candle in the dark night. I am walking with you in prayer, my arm is around you, and I pray for your comfort and peace and that those you love draw ever closer to you.

Anonymous said...

Oops; didn't realize my husband was signed in. That last comment was me.

Caminante said...

I don't know what to say, my tears say it but Margaret said it better... you have spoken Good Friday to me in words so authentic and, mixed up in it all, is also Easter. I read your words and pray wordless prayers and that is all I can do. xo

Suzer said...

When I pray for you, I don't know if I'm asking God for a cure. I share your feelings on that, holding the tension between a God who heals versus the arbitrariness of that healing. My prayers for you are more about God's presence, God's healing spirit within you, and having the strength to survive the cancer one day at a time.

That said, I don't think it hurts to ask God for a cure. God sees and understands that in His/Her own way, and holds us gently whether we weep or whether we rejoice. Know that you are loved by many, many people here. :)

Ann said...

Taking you for a walk on the beach today - hope you can smell the salt air and feel the sand between your toes.

Kirstin said...

I woke up to all of these. Thank you. Love to everyone.

jw said...

Jesus didn't attended Holy week Services either. I don't think he attended any kind of Easter Worship either.

I remember awaking once after a night of Mary-Jane (with some folks I thought were friends) to see, 10 inches before my eyes, a San Francisco police badge. My very first thought was (to use the Latin) excreta! I am doomed; I will be arrested; I will be in jail; I have been turned over to the cops by my friends, and most painfully, my soul mate Margaret, betrayed by the very one I thought I was nearest to in all the world.

But at the same moment I thought, NO! I KNOW Margaret loves me and would never, never do such a thing; but the badge is real; but Margaret would never do such a thing; but the badge is real....

and finally I decided that though none of it made any sense, and though the badge was real, I also knew Margaret and that no matter what, and though I did not understand, all would be well.

And in the end it was. The badge was real. The fellow (a boyfriend of Margaret's at the time who I insisted was wonderful because I was in life-vows as a Franciscan and so nothing was possible for us in a life-together)whose badge it was was a member of the SF Police Motorcycle Group and the Badge had to do with that, and it was all a bad joke, all were indeed my friends, and I was safe.

I have so often wanted to preach on this incident but no congregation would ever have allowed it (this is the USA after all). But in the end, all I am saying is that the ONLY thing I had that I could hold on to was the "knowing" that I was loved by Margaret, and that no matter what the circumstances seemed to be, in the end I could trust her, and that with that, I could rest knowing all would be well, knowing that all, indeed, was well.

Like it or not, God's gotcha. I see you, I see God at work in his world which he has promised to bring to complete perfection, just like a cake that tastes, ahhh, "perfect!" I read what you have written and I hear a love-letter from God to God...

Kayko said...

Thanks, Kirsten, for your honesty. I, too, cringe at the ra-ra-ra of the Cancer walk commercials I hear on the radio, and the "fight" to beat cancer. You can't "fight" cancer, it will kick your ass every time - it's just sometimes you can get up afterwards, and that last time you can't. I am glad (such a trite word!) to see that you are still standing, despite the ass-kicking you are getting, and I will pray that God keeps giving you the strength to stand up. Love to you.

Anonymous said...

Wow. I'm humbled on levels I had no idea were even possible.


I liked this statement:

"I feel God in wind and water, nature and morning tea....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'll second that. :)

Dora said...

Thanks for the Good Friday message. Love and prayers

Anonymous said...

thank you.

prayers go with you.

KJ said...

There are many times that life causes me to feel that Lent, and Good Friday in particular, are redundant.

May God grant you peace as you live into the reality of what "It is finished" actually means. I'm pretty sure that I do no yet get it.

Grandmère Mimi said...

Kirstin, I send my prayers and my love. Of late, your life has truly been a long Good Friday, as your writing powerfully reflects. The evidence of your strength also shows through in your words.

I pray for God to heal you in spirit, soul, and body in the way that God knows that you best need to be healed and can be healed.


JCF said...

Prayers beyond words. Easter is so near, it's HERE.


SimplySuzi said...

I came over from MP's place and am so glad I was able to read this.

Prayers, a wish, fierce hope... Blessings of peace, comfort and "healing" - and grace, abundant grace.

Lisa Fox said...

Thank you for this long catch-up, Kirstin. I'm not often on Facebook, so I count on your blog.

I'll second what Margaret and Lee said. God knows, you have you own very long "Good" Friday.

As witih Maria's parish, you are also on the prayer list here at Grace. Our prayer circle is praying for you every day ... multiple times a day.

Because I have come to love who you are, of course I would like for you to be cured. But what I pray is from the Book of Common Prayer for those who are sick or struggling: "That they may be delivered from their distress." Sometimes that will mean cure. Sometimes that will mean a sense of peace. Sometimes that will mean a peaceful and holy death.

Of course, you know all that.

Kirstin, I understand your various feelings about death. You put it bravely and honestly. I hope I could be as faithful and articulate as you are being, were I in your shoes.

My prayers are ever with you. That you will be bathed in that peace that passes understanding.