Alleluia

The ear, and the incision.

1) I just got out of the shower.

2) We’re still waiting for the last stain, on the lymph node biopsy. The last thing we don’t know about is micro-metastatic disease. Everything else is clean.

They thought the tumor was 3mm deep; it turns out to have been 6. The technical information is "Stage 2B, without lymph involvement." So again, I am so damned lucky.

I say "lucky" rather than "blessed" for a reason. People get sicker than I was, all the time. God is also with them.

I see the oncologist again on Tuesday, and should have final test results. I go back to the head/neck surgeon in a month. My ear hurts a little, and feels kind of weird; that’s normal for what it went through, just a week ago.

Thank God for dissolvable sutures.

Meanwhile—anybody want half a can of dry shampoo?

More on wordlessness

Note just for honesty's sake: This thought process grew partly out of an e-mail exchange, and the following post is almost verbatim what I wrote there. Edited for anonymity of the other person.

It's frustrating—but it's also fascinating. This all comes out of such a deep gratitude. It’s easy for me to thank a human being, even for gifts of deep wisdom, and to hear them receive it as they will. I may still be amazed by such gifts, for a long time. I only need to acknowledge them once, for the giver’s sake.

But to life, God, body, soul, community—to just the gift of waking up? It's like trying to birth a way of being (not of speaking)—knowing that it's only now being conceived.

I know... relax, breathe, process this, be with it, don't rush. Meanwhile everything in me is (not merely says) both "thank you" and "wow." And wants to just yell, the words that don't begin to be adequate.

How to incarnate that shout?

I don't ever want to go through cancer again. (Chances are I won't, with interferon: 70% is passing.) But all of this has taught me so much. I know that God and community are with me. I know that however the biopsy comes back, I am in the hands and arms and heart of God. As we all are. I know that I can trust my body. I know that I am alive. I can't even touch words for how grateful I am. There are gifts in. all. of. this.

This is about being, a different kind of "whole."

I’ve been told I’ve done a good job with the words, thus far. It's what I do. I know they won't stay permanently gone—this is all about expressing, with the human being that I am. They will be a piece of that, not nearly all of it. How, I don't know.

Living beyond words

This is a segue from the previous post. I really can’t explain it better, yet; I don’t even fully know what I’m talking about. I’m seeing sculpting, rather than speaking; forms, whose reason for being is the pure, simple joy of holding flowers. Ultimately, breaking this life open and being nothing but “thank you.”

I know what I mean, but not how to convey it.

I am so verbal. And I'm in a place where words don't live. I need to learn to translate the absence of words into the presence of life (other forms of expression), and I don't know how to.

That may be what this summer is for... hmmm. It's like transsubstantiation, only without bread. With, being.

"Living a Eucharistic life," and all that. I would have thought that I was doing it. Like so much else since the diagnosis, I didn't have any idea.

Responses?

Impossible question

“How are you?”

I don’t know. Even with good friends, I never know how to answer.

Physically: Recovering. Waiting for biopsy results. Healing well.

Emotionally, psychologically, spiritually: Just beginning to process, and there is so much.

Hearing this as a casual question irritates me, probably irrationally. I don’t have a casual answer. I may not have time (or want to take the time) to come up with a real one.

If you ask out of concern, I can hear it. If you’ve been connected with me through this, you know who you are (faculty and close friends). Don’t worry about these instructions. We’re already in a place of trust.

If you are a survivor yourself, or a loved one is, likewise you know how to meet me. Many have, and I am grateful.

If you don’t know me well, and you’ve never had a trauma to your body and your soul, you honestly can’t imagine. If you see me, don’t ask me how I am. Tell me you love me and you’re praying for me. How I am is always changing. Where I am is a place beyond words.

Connect with me there, and let me find ways to share with you.

This time last year

I was busy, buried, and mad at the world. Now, I’m in a space my soul has never been in—and I’m being given time and grace to be here.

My friends, the class I entered with, are graduating in two days. (I decided long ago to extend my time. That had nothing to do with the cancer, and everything to do with growing up.) The semester ends on Friday. Normally, I’d be writing furiously now. Past springs, I always had late work to finish.

I have the time to be, and to process, and to live.

Got an e-mail this morning from my homiletics prof (and academic dean); she said we needed to talk about my finishing, and offered me an incomplete. I replied that I’d sent her an e-mail last night, asking for one, and thanked her for watching out for me. I went to the registrar to get the form, and bumped into said faculty on the way. She focused completely on my needs. She totally trusts me to take care of this. I know I will—but her respect for where I am, touched me.

So I’m taking the incomplete, but not extending it. I won’t be sick until after the first week of June. I know I can finish these reflections by the end of May.

Everybody has my back: friends, faculty, and those who are both. I never knew how supportive this community could be, until I needed it. I keep being amazed by that—not because I thought they couldn’t; but because they are, so completely. I wish I had a way to thank them.

I came in a little while ago, from getting gelato with two friends. We were (most of) a small group together; my dropping out pretty much coincided with my diagnosis. One couldn't come; she's nursing a sinus infection. The three of us walked down to the Naia place at Cal; got our gelato (Scharffenberger and strawberry, yum), went outside to eat. It was the first time I’d walked anywhere since my surgery. We talked a long time, about things that seminarians consider normal life. My illness and I were not the focus; nor did I want to be. It was easy, free, and fun—and the day is beautiful.

Came home to a get-well card from a bunch of people at church (thank you), and am writing this while I’m doing laundry. Going to Evensong later.

I have the time to taste this. I will have time to process it. Life is really wonderful.

I just keep thinking

…of how grateful, blessed, and lucky I am.

I had cancer. But I got it in school: late in the term, in this community, while I have steady health insurance. My community has borne me up. For the first few days, I felt like a pastoral-care lab rat. But we all got over it. People don’t try to take care of me, anymore—but they are still so genuine. They care for me the way I wish we all cared for each other, all the time.

If I ever doubted it (and I did), I know now that my faculty has my back. My advisor, who always was my advocate, has become my friend. She gives me time whenever I stop by and her door's open. She listens, and she makes me laugh. I checked in with my homiletics prof yesterday; she’s also the academic dean. She asked how I was, and volunteered information about how I can keep my health insurance, since I don’t need full-time credits to graduate. She’d been in a conversation about me that morning; they want to make sure I’m taken care of. She also told me that she and her spiritual director had prayed for me, that morning.

This is someone who raises sarcasm to an art form. But as I told her what I'd been through, she listened with her heart.

Another, who pushed me hard a year ago to learn a kind of toughness I was totally lacking, has been an absolute rock: always prayerful; always encouraging, always supportive. I am floored at the depth of the gift—this strong, solid core—that neither of us knew she was helping me to find, at the time. (She wanted me to find it, for ministry and daily purposes. We didn't know I'd need it, this soon or this intensely, for life.)

All three of them said, in the beginning of this: if you need us, we are here. They meant it.

I’m still waiting on the biopsy, but my other tests were clean. My wounds are healing well. And I’ll have time this summer, sprawled on my best friend’s floor, to process everything that’s happened—and then to finish two incompletes.

My community has been so generous. They say I teach them. They have taught me how to be there for others.

Cancer sucks. It’s terrifying and stressful, and it steals both your “normalcy” and your sleep. I don’t ever want to go through this again. But there have been blessings, every day of this.

I got melanoma. So far, I have dodged metastasis. I am unbelievably lucky. I don't take my life or my body for granted, anymore.

About the interferon trial: Some of my friends have been praying that I get randomized into the easy group (the month of treatment, rather than the year). I’m not really comfortable with that; it means that someone else has to take the harder piece. Pray for me, yes—but just keep surrounding me with love and support. God will take care of what needs taking care of.

Thank you all, so much.

Trying to find a balance

…between clarity and pain relief.

I wouldn’t need a brain, if I didn’t have to try to work on a reflection paper. I’m only going to my afternoon class—and only because it is that class; my instructor’s been a rock and I know she wants to see me, and all we’re going to do is turn in evaluations (done; it was easy) and have social time. Oh, and chapel, too—but that doesn’t require higher functioning, just the ability to walk there. My balance is still off, but it isn’t very far, and there are railings at the stairs.

Just now, I don’t remember where I left my toothbrush. But I can’t blame one Vicodin for that, alas. I brought it back from my friends’ bathtub last night, and chose not to leave it in the bathroom, because my shelf was already too full. So there’s a Ziploc bag somewhere in my bedroom, with toothbrush, soap, and all that sort of thing. And now I get to find it. When I’m supposedly not allowed to bend.

I also ought to do laundry, but carrying it down the hall to the elevator daunts me. I have a few more days’ worth, I think. (How can I possibly not lift, for two weeks?)

I feel like a Borg, with a weird implant in me. My ear mainly tickles; my neck itches and hurts. The tape comes off in three days, yay. It’s a stiffness that’s horribly distracting.

The itch means it’s healing; and that is a good thing, she says through gritted teeth.

I have, incubating in me, a post about bodies and our relationship to them. I’m intrigued by how long it’s taking me to find my own way back in, and I’m thinking about the gift of the body, fragility, strength. Probably not today, though; judging from the mental presence that I still don’t really have.

Staying home today

Got a (lovingly) strongly-worded e-mail yesterday, and I’m listening to it.

I really wanted to go to the Sanctuary this morning, and I woke up in time to throw clothes on. But I hit the wall yesterday, six ways to Sunday. I still feel run over. What I need more than anything is sleep.

If I feel up for walking down to All Souls later, I can. But no pushing myself.

God knows the food I need. And that I’ll give it again, when I can.

One more thing to pray for

A negative lymph node biopsy. I've dodged every other bullet, and I know it—but I may not get the results of the biopsy (done on Thursday), until I see the oncologist again, in ten days. It's Kaiser—they may or may not call me.

I know that being anxious doesn't help me; this whole thing is one long adrenaline rush, interrupted by general anesthesia. Clear CT and PET point to safety—but I won't really know, until I get the results of the biopsy (and find out what they want to do, if it's positive).

I do see my head/neck surgeon again on Thursday, and I'll ask him. I think I'll e-mail him on Monday, and ask when I can find out.

I know that I’m grabbing at a straw here. My own prayers aren’t usually like this. I don’t know that I’ve prayed for a specific medical outcome; I know that God will do whatever God does, and God very rarely breaks the laws of physics. Throughout this, my own prayers have been all of yours—I haven’t been able to pray for myself, in the usual sense.

I really just want. to. be. done. with. this. I don’t want more neck surgery, or radiation, or chemotherapy if I can avoid it.

Thank you, all.

Slow and shocky

I moved this update from the previous post; I wanted to stop looking at that photograph.

I did take a bath, in my friend's tub. Took forever in there. Cool water felt good, and my body moves so slowly. I feel so different. Me--but different. Trying to wash carefully, turned into consciously taking care of my body, turned into realizing that this onslaught is nowhere near over. I have a two-week reprieve, then I start interferon. My body is where it has never been, and I have a long way to walk before I'm home.

When I get there, "home" will be different.

There's no way to neatly wrap that. Cancer changes you. Quickly. Deeply. I feel in some ways, more essentially myself. This is a wound, the healing of which will heal me. The soul-work I was doing in my previous life was all about courage, commitment, strength. I chose that path. In some ways, it made me more ready. But I never chose this.

You never know what will happen to you.

Wound

My ear is small, dark, bloody, and battered. You're also seeing the tape covering the sutures on my neck, and tape keeping my hair out of the way. The purple line is the surgeon's marker; I know this because previously, he'd written "Yes" under my ear, in the same color. (It's their own way of keeping track: "It's this side.")

My hair isn't dirty or wet. That's blood. I can't wash it; I need to keep the sutures dry.

I got up this morning, tired of the weight of the catdish. Both wary and curious, I gathered my sterile Q-tips and Bacitracin, and walked down the hall to the bathroom. I pulled the bloody gauze out of the protector, and threw it away. Then I looked at my ear in the mirror.

I could only stand it for a few seconds; I got queasy. (I still am, now, thinking about it.) I wobbled to the toilet, thinking I was going to throw up. Instead, I sat down, and fainted. I woke up draped against the back; luckily, there had been no way to fall. I have no idea how long I was in there, except it was shorter than a hall-mate’s shower.

I got up, wobbled back down the hall, and slept for another hour and a half. I’m still exhausted. I don’t want to do anything but sleep—and even then, I rest my head on a hand that’s still bruised from the IV. My neck hurts; my ear doesn’t. But it feels so very different.

It’s not that I’m repulsed by it; it’s… I don’t even know. There are too many feelings floating around in me right now.

As long as I didn’t have to see, I could protect myself—even as I was going through the experience. Now, I know what this is, and what it was. “Sobering” isn’t the word. I am clearly wounded, even as I know I dodged much worse. It's a wound that I don't have any choice but to absorb. It will heal, and be different. As will I.

Not going anywhere farther than my friend’s bathtub, today—and that’s barely a block. I’m going to hole up here, rest, and heal.

UPDATE: I got up to take care of it; I hadn't been able to, earlier. I'm so physically out of it still, that I couldn't open the seal of the ointment. Wobbled down the hall to ask a friend to help. She's at least as science-geeky as my surgeon; but a soil scientist, not an MD. She kept saying, over and over, "He did a really good job!"

I felt better, hearing that.

She ended up swabbing me for the first time; I didn't really want to see. It tickled, and burned a little, but wasn't that bad.

I started sort of crying as we talked--but I don't even feel emotionally involved in this. Nothing is landing yet. I can feel it all circling.

This is definitely a rest day.

UPDATE AGAIN: I took a higher-res photo, with the same camera phone. Took a Vicodin and, oddly, woke up a bit. I'm still not processing in words, without crying, and I still need only to sleep.

I'll tell the story tomorrow

Just beginning to perk up, and am still very tired.

Today was good. My ear hurt all night and kept me awake, but I think my body learned how to make enough endorphins. I took a Vicodin after lunch (and slept for an hour), and another just now. I’m really not suffering. I itch like crazy under the cat dish; I can take it off and scratch (gently) tomorrow.

When I walked into chapel for the healing Eucharist, a friend took one look at me with my storm-trooper protection on, and called out, “Hail the conquering warrior!” The presider looked at me and laughed, in a totally affirming way. (He’s been through health crises. And I’m so relieved and joyful, I don’t inspire pity.)

Hugged my advisor at the peace, and thanked her for everything. She told me how good it was to see me, and that I’d been in their prayers. And she said to me, “Keep on healing.”

Oh, I am. Physically and emotionally. This whole journey has taught me so much. I asked it to teach me. And it has. I know that I’ve grown into and through this; I can feel it. When I’m not living in the middle of it, I can process more of that.

Talked with a friend after chapel, and arranged to borrow her bathtub if I need to. I have to figure out a way to bathe, and keep my neck and head dry. We have tiny showers, in the dorm. I’ll be able to wash my hair in a kitchen sink, with help. I don’t do that more than 2 or 3 times a week, anyway—so it’s not really worth tracking down a dry shampoo. I think I’ll only need to be so careful, until next Thursday.

I need to go thrift-store shopping; I need summer shirts that button. I have no desire to start pulling t-shirts on over my head. If I hold off on the Vicodin tomorrow, I can go—or I can see if anyone can come with me. Most of my friends have much more work to finish than I do, right now though. (Thank you, all of my faculty.)

My neck hurts when I twist it to the left, against the incision—so driving’s still really out. I think there are places within walking distance—and I ought to return an overdue CD to the downtown library, anyway.

I’m not supposed to bend, strain, or lift for two weeks. I may be able to postpone packing and moving until the first week of June. That would be a huge help. I need to talk to the housing director (or whatever his title is) tomorrow. He’s a friend, so I’m not worried.

It’s hot here, and one of the best things about today was the strawberry popsicle I had before lunch. Another, was the presence of a friend I rarely see, and wasn't expecting. He’d heard about me through the San Joaquin grapevine, and there I was with my cat dish on. He hugged me and we talked for awhile—yet more prayers and love.

I’ve been surrounded since the day I was diagnosed with this. I don’t know what I would have done, anywhere else. You do what you need to, and you cope—but this community has been phenomenal.

I took a nap (I’m under orders to rest), got up, checked in with a few other people. Talked with my advisor again, briefly, and told her about yesterday. We walked to the parking lot together, and I went back to Seven Thieves for a Haagen-Dazs bar (though I really wanted another popsicle; they were out). Had dinner shortly after, and now I’m back upstairs. If I know what’s good for me, I’ll go to bed early.

There we are: an easy, grace-filled, restful day. Pretty much what I needed. Tomorrow, I’ll figure out how to bathe, go clothes-shopping, and work on a paper. I may call another faculty, at home; when I called her from Kaiser yesterday, she offered the processing time. Sunday, if I’m up for it, I really want to go to the Episcopal Sanctuary in SF. It’s a homeless shelter, where my advisor’s parish does a weekly Eucharist. She takes groups of us, when she goes. I went once, in April, and loved it. That’s the kind of work I want to do.

I’ll try to tell yesterday’s story, tomorrow. I didn’t set out to write all this; it turned into a narrative, and I couldn’t just stop it in the middle. Perhaps a sign that the Vicodin kicked in, or that I’m more tired than I know.

Tomorrow, if I get to it: medical jail, really bad acupuncture, vampire bites, and safe, competent care.

Peace and love to all.

Still life with cat dish

Still. Life. Yeah.

Drugged as I am, I can't sleep. It's okay; I'm just beginning to process everything. My ear hurts, even with the Vicodin, and I know I won't be out of the woods until the pathology report comes back, and I go on and then off the interferon, and my skin is clear for a couple of checks, and... the docs say never.

I don't believe them.

My camera is God knows where; I took this with my cell phone, just now. I look like hell--but I really don't. There is an ear under there. And in case you can't see, the green circles are smiley-face stickers. (It came that way, but I like them.)

I'm really happy that there's a healing Eucharist tomorrow. It has nothing to do with me; this is the last regular Friday of the month. The band goes straight across my forehead; oh well, Louis will figure out how to anoint me.

My community has been the very definition of awesome. I still feel everyone's prayers, like little invisible wings fluttering all around me. Sure, I just had surgery to remove cancer--but all of the results so far have been as good as they possibly could have. (Yes, I had it--but it had not spread.) I was by myself today, in what I jokingly called "medical jail"--but I was never alone.

Thank you all, so much.

Cat dish comes off Saturday, any time I want. Then I get to practice putting Bacitracin over steri-strips, with a Q-tip, without flinching. Sutures come out next Thursday, but I won't be sleeping on that side for awhile.

I'm not looking forward to seeing my ear for the first time--but part of me is also giggling at the idea of being half-Vulcan.

Yep. Still loopy. Or just damn happy that this part is over. Thankful to God, my doctors, my community, and my body.

Story forthcoming, tomorrow sometime.

Home

Drugged. Queasy. Need sleep.

More later.

Relief

Right before going into surgery Kirstin learned that her PET scan was normal. YAY! (Next progress report will probably come directly from her, this evening. Stay tuned!) -- Posted by Andee at Kirstin's request