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

Preparing

I don’t feel like writing. I’m tired right now. But I need to give some sort of an update.

I’ve been busy the past few days, helping my best friend’s oldest cat through his dying process. He died this evening. She was napping on the couch, and I’d just finished dinner; I’d come back into her bedroom to hang out with him. He’d gotten out of his nest (in her laundry basket) and was lying on the floor. I knew, as soon as I saw him. I felt for breathing, though I didn’t need to. His fur was already cool.

I woke A. up, and we sat with him awhile. We read the applicable parts of the burial service for him. And we sent his body to its next place.

I’ve been part of her life, and his, for the past three years. I was there, two years or so ago, when this cat found God. He’d been absolutely unpettable, by anybody but her (and that, on his own terms). A switch flipped, and he was all about affection. All he wanted was for either of us to hold him. He stayed that way, for the rest of his life.

We don’t know how old he was, but he was old; he’d been on thyroid meds since I can’t really remember. He came to her as a stray, and a terror to the neighborhood. She tamed him. He was an absolute sweetheart for the last two years of his life. And, an absolute brat.

I know he’s being impossible to God right now. And I’ll miss him.
***

A. came with me to my consultation yesterday with an oncology nurse here. The first thing the nurse said was, “I don’t know much about interferon.” A. and I looked at each other, and our eyes nearly rolled out of both our heads. She redeemed herself quickly, though. She had a great sense of humor, and she listened. What she knew (germ prevention, and normal chemo guidelines), she knew well. And she had lots of alternatives for chasing (and catching) my unsociable veins.

I can’t have most raw foods for the next year, apparently. I’ll be more susceptible to salmonella. I can have peeled fruits and veggies. No raw leaves; you can’t peel them. We went out for sushi last night; it was the last cherry blossom roll I can have for awhile.

We’d both been cranky and edgy, from worrying about me and from watching her cat die. We went out for ice cream afterward; both feeling better. We know more of what I’ll be dealing with. There are workarounds, for some of it.

I shouldn’t be really sick right away; it takes about a week for interferon to build up in your system, even at these doses. I’m supposed to drink six bottles’ worth of water a day. I can do that. I can do everything I feel good enough to do; mild to moderate exercise should be possible, and is good for me. Apparently the last side effect to leave is fatigue. That makes sense, considering I’ll have just assaulted my body for a year. The tiredness can hang on for another six months. Not what I need, when looking for (and doing) real-world work. But there we are. I really don’t know what I’ll experience, until it happens.

I’m already craving old sci-fi movies.
***

I drove to Livermore this morning, because I felt like driving (yeah, I know) and because I really wanted to go to St. Bart’s. A. had taken me there last November, and I’d loved it—and never made it back. I was so glad I went, and I felt so much better on the way home.

The community is wonderful—it’s like a small, laid-back St. Aidan’s. Everyone was so warm to me. Carol (rector) remembered me from before. We hugged, and she asked how I was. I told her, “The short answer is, fine. The real answer is, it’s been a rocky spring.”

She asked about school. I told her school was great, and briefly about the diagnosis. She gave me a sympathetic look, and went on with getting the morning going.

They do a hymn-sing before services. People call out what they want, and we sing them. The third hymn became the opening. Someone called out a number; it turned out to be “Stand Up, Stand Up for Jesus.” I was trying not to crack up; I hadn’t sung that since I was probably 20, with a bunch of fundie friends in college. I hadn’t even heard it, since. It’s militaristic and trippy and struck me as hilarious—until one line caught me:

“Let courage rise with danger, and strength to strength oppose.”

I wasn’t thinking about Christian soldiers. I was singing for survival.

I told someone sitting directly behind me, that she had a good voice to sing next to. She told me later that she felt I’d been there for “eight thousand years.” The community is incredibly warm—not pushy, just open. I love them. People I’d never met hugged me at the Peace, and asked if I lived there. “No, actually; I’m a student at CDSP in Berkeley but I’m based in Stockton for the summer… and I’m starting chemotherapy tomorrow.” It didn’t freak them out. They said they’d pray for me, and I knew they meant it.

The liturgy was much like what I’m used to: pieces from New Zealand, Common Worship, other sources around the (God help us) Communion. Carol asked me, like she had in November, if I’d carry a chalice. I leapt at it. The whole experience felt like home.

She told me to hang around, afterward; she wanted to hear more about what was up with me. So I chatted with people who were totally friendly, whom I didn’t even know, until she’d finished greeting everyone. She took me outside, to a bench under a big tree, and we talked.

I showed her my ear, and my scar, and told her what was next for me. She asked how I was praying. I told her I really wasn’t; my community prayed for me.

“Because all I’d pray for is—“
“Heal me.”
“Exactly.”
“So why don’t you?”

I told her why I didn’t: because lots of people pray for that, and don’t get it. She said she didn’t really agree. And she told me something that I would not have been ready to hear, before now:

“God will either heal you, or change your heart so you don’t need it anymore.”

She was the right person, at the right time. I could take that in. And I thought, in the car on the way home, “That’s at least as good as the odds I have now.”

It is. Better, really. And I think that what she said is true. I need to be open to God in this. I still need to be held in others’ prayers—but it’s time now that I join them. I think I can. I’m awake enough; I’m strong enough; I’m still healthy, and I’m here.

I start the meds tomorrow. I don’t know how they’ll affect me. I know I’ll feel something, and I want to. You can’t mess with my T cells without me knowing. I’ll know it’s working if I’m feeling ill, if that makes sense. But I need and want to live my life.
***

I have a friend who graduated from CDSP two years ago. He’s been living with HIV/AIDS for half his life. I saw him at this year’s graduation, and we talked briefly. He really got how scared I was, and am.

Someone with that diagnosis knows if, but not when. I don’t know either. I have no idea whether I’m clean, or whether something is growing inside me. I’m at the point now where my head realizes: the only sane choice is to say, “Fuck it, I’ll live.”

My heart isn’t there yet. But it will be.

Pray with me: for manageable side effects, and for healing.

“Let courage rise with danger, and strength to strength oppose.”

Two paths

…or, what my scar is teaching me.

I am still so scared, underneath everything. There’s a current of fear running through me all the time. It has nothing to do with knowing the side effects of interferon; that choice is simple. It increases my chances; therefore I’m taking it. (I start probably in two weeks.) If I can physically tolerate it, I will endure it. If not, I can stop. I’m not afraid of feeling horrible for a year, if it means life.

I’m afraid of statistics. A recurrence could be fatal. The disease process is awful. And right now, I could flip a statistical coin. Interferon is by no means a guarantee—but it could take me from 50% down to 30%. A 70% chance of not having to deal with this ever again, is passing.

It’s the uncertainty that gets you. I’m young, healthy, and strong—and I feel like I’m living on what may be borrowed time. I don’t know that it is. I don’t know that it isn’t. And I cannot wait five years to exhale.

I have a scar from the lymph node biopsy. It runs for about 2 ½ inches, directly beneath my ear down my neck. Every time I nod, or turn my head, I feel it. And I feel the fear, again. Sometimes I can feel the stiffness and remember, I’ve been somewhere. I can take it as wisdom, touch it and let it go. Other times, it throws me into a panic again.

I don’t care that my scar is visible. I care that I feel it all the time. I rub vitamin E into it whenever I think about it, to soften the tissue and to help it heal. I’d been doing that out of fear, more than out of love.

I was massaging it the other night, gently but less than kindly, when something stilled me. It came as a voice, almost: “Don’t do this to be expedient. Be here, with your body. Love it. Help it heal.”

I stopped. And I realized what I was doing. I started rubbing my neck again, slowly, in circles, with two fingers. I turned my music off, and I just was, there, with my body. I was there with the wound, and with the healing. I don’t know if words ever came to me. I was present, in a deep and still place: a place of knowing, awakening, healing.

Since then, that’s become something of a prayer time. Yesterday morning, I left late for church. I swiped some cream on my neck on my way out the door, planning to rub it in on the way. I forgot bus fare (which I didn’t need anyway) and had to come back for it, making myself later. So then I half-ran down the hill.

At the BART station, waiting for the train, I remembered. And I slowly, intentionally, with every healing will, rubbed the half-evaporated lotion into myself.

Be present. Be here, with your body. Know that what’s happening is deeper than your consciousness. Know that you are in the hands of God. Ally yourself, with healing.

When I think about cancer, I freeze in fear. Touching my scar, intentionally, helps me choose love.

Last night, lying in bed before I went to sleep, I rubbed in circles, over my scar. I felt for my pulse, and I stilled my fingers there.

I. am. alive.