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.

22 comments:

Rosa Lee Harden said...

Kirstin,

Thank you for putting what is happening in your heart into words. I appreciate getting to know you better here. You are in my prayers, and you challenge me to live in the moment with God!

Peace, Sister!
Rosa Lee

Rani said...

oh... no more baby oil in the formula. but almonds... yum! sounds divine. like a mountain of marzipan. love it. the fiddle, fits you well my friend! how exciting!

Sean S. said...

Love you, Kirstin. I'll back you up on guitar.
sean

Kirstin said...

Thank you, Rosa Lee! It's good to see you here.

Thank you, Rani!

I love you too, Sean. Thank you.

Kim Robey said...

You are giving us such a gift on this blog. Thank you

SHC (also known as Gator) said...

Pirate warrior! :-)

I think it's terrific you're taking up the violin. Don't know whether or not I mentioned it, but I started learning the ukulele awhile back. I know nothing about music and had never tried to play an instrument before -- can't even read music.

But I was surprised by how much fun it is to learn and what a feeling of accomplishment and enjoyment it brings. You probably already know this, but YouTube is a goldmine in this regard: You can get all sorts of lessons there to supplement in-person lessons.

Anonymous said...

Kirstin: Truly, something has shifted in you. What I sense is a graceful hope for being totally and fearlessly present for all that is. I commend you for that presence, that grace. May we all aspire to be so present in every moment that we are blessed to live this gift that is life.

Kay & Sarah said...

Ditto on what Anonymous said above. You are so in the moment of living.....a place where we all should be.

On the question about asking the doctor for information about what you may likely encounter. Do what you need to do. If you need information ask for it, if not don't. Your doctor can tell you what happens in most situations. But go forward just as you are doing. Living your life, doing those things you want to do. I love the fact you are going to begin learning how to play the violin!!

My hope for you is that you live for many, many years. I send my love and continue prayers for you. Kirsten, thank you so much for sharing a very personal part of your life with us. It is a blessing.
Kay

Deni said...

Kirstin, I have a violin I'm not using. It's good to learn on. I can bring it to you, along with extra strings. Email me:

Dharding2@earthlink.net

Nancy Nyberg said...

What an extraordinary woman you are!

Sylvia said...

I give thanks that you are feeling so well--spiritually and physically. Hallelujah! You remain in my prayers!

Sarah in Italy said...

I wish science was a God sometimes. Where do you put the ache when you don't have a faith ?

((((((much love sweetheart))))))

K, right from the minute we met on ye olde CD your "special" shone through.

Your "special" grows and grows.

Mark Lodico said...

Kirsten -- Thanks for living your life with this grace. Your witness helps me live my own life.

Teresa said...

Pei pa koa is pretty decent cough medicine (from herbal as I remembered), great non alcoholic medicine, some western cough medicine are more effective, but this is non drowsy.

You can access info online @
en.wikipedia.org/wiki/Nin_Jiom_Pei_Pa_Koa
http://ninjiom.50webs.com/

Mary Beth said...

I was thinking about you, praying for you, on the way to church Sunday morning, and I heard this: "The Spirit of the Lord is upon Kirstin."

It was so powerful that I pulled over for several minutes.

This word won't come as a surprise to anyone or you. But I wanted to let you know.

Rudo said...

Thanks Kirstin for continuing to be a source of inspiration and hope for me, including me. You are in my prayers often. May you continue to feel the presence of God.

JCF said...

Kirstin, YOU are a blessing!

Now that my friend Cathy has departed for the Main Event, I might be able to be of more use to you. Drop me a line if you'd like jcf1899 at gmail dot com

[Is this Saturday too far ahead to plan? At 2PM, we're gathering at the May Flower, Downtown Sacra-tomato (3022 L Street) to celebrate Cathy's life. Come as my guest if you'd like? Let your steroid-fueled munchies extend to Chinese food! :-D]

it's margaret said...

youtube... a youtube video of you playing the fiddle. o yes.

DeborahG said...

You keep finding new ways to share the message of love. Now you've come up with fiddling - how perfect: the beauty of music plus the glee of learning something new. Fiddles always make me want to dance. May you be fully present in each step of this wild dance!

Anonymous said...

Praying for you and immeasurably moved by your blog. Sending you love from an island near Seattle.

JCF said...

"Yervoy"?

For "Late Stage Melanoma"? (w/ risks of possibly-fatal immune reactions)

Ring a bell, Kirstin?

[Just heard about it on NBC News tonight. Wanted to make sure you were aware of it!]

Mary Beth said...

Praying for you today. No joke.