I shaved my head about ten years ago…

In fact, it was exactly ten years ago, September 1998. I wanted to do it while I was still young enough and had an irresponsible-enough job, that I could get away with it. I went on a long Saturday bike ride, all over Seattle, and ended up at the condo of friends. They gave me a beer. We got talking, and I asked them to shave my head. They gave me another beer, and did it.

Bad idea. I looked like Hitler Youth, until it started growing back, then I looked like a wet rat, for months. I vowed I’d never do it again.

Some things change. Some vows, you don’t keep. I’ve been losing hair, in dribs and drabs, to interferon. My doctors told me I wouldn’t, and I didn’t, all through the infusions in June and July. I didn’t start shedding until I started the shots.

My doctors aren’t surprised that it’s happening, now. (Same dermatologist; new oncologist.) It’s listed as one of the “possible” side effects. Not one that everyone invariably gets, like exhaustion or the flu. As I understand it, I could continue shedding. It could speed up, or slow down. Or, it could stop at any time.

I still look almost normal. I think you have to know, to see. But I got my first, “Yeah, I can tell,” yesterday, when I was talking with a friend over breakfast before church. That, plus the general grossness I feel when I run my fingers over my itchy scalp and come out with pinches of hair, means it’s time to deal with this.

I’m not losing fistfuls or clumps, at any stretch. (I don’t want my mom to be horrified.) My hair is nowhere close to half out of my head. I’m more annoyed and bothered by the constancy of dead hair in my fingers (and in little clumps on my books on the floor), than anything. That’s what first prompted me to ask my cancer-survivor friends, what they did.

I got some good feedback, including this great line: “My dog shed, and I loved him.” Most of it boiled down to, you can do hats, or scarves, or whatever—or just ignore your head. You’ll know what’s right for you.

The stress of realizing I had to think about this, now, after surviving the illness itself, was hard for me. Once I’d made a decision, it’s easy. I already can’t stand the feel of my head anymore. I’m going to cut my hair significantly shorter, this week when I have energy and time. (I thought about going today, but took a needed nap.) I’ll shave it later, if I need to. But I don’t have to go from slightly-noticeable to bald, overnight.

At the same time, it’s okay to look like a chemotherapy patient. I am one. And I know that I’ve already survived the scariest thing that’s ever happened to me. This treatment wipes me right the hell out, but it does not threaten my life. I will get through it. And I will be healthy again, next summer.

It’s interesting that I’m still hung up on the idea of looking like a cancer patient. I don’t want to evoke pity that I don’t need. At the same time, I have limits I didn’t used to. It’s not a bad thing, for my looks to remind people that they can’t expect the same behavior out of me. And while I go to school with middle-class about-to-be-ministers, I spend my heart’s time on the margins. I have an “in,” so to speak. I’ve never been homeless, or suffered a mental illness worse than depression. I always had the support I needed. But my body’s in a margin of its own. The word “cancer” still strikes chills in anybody’s spine. My obvious battle with it—and my survival—can show that this is not invariably a death sentence.

I don’t cringe anymore when I see pale, puffy people in headscarves. I think, “You’re brave. You’re surviving. I salute you.”

So. My fear of looking pitiable is really all my own. I’ve never felt such strength, as when I was fighting for my life. And I’ve never seen it, save in the eyes of other survivors.

At the same time, physical illness or injury is understood. We don’t give the same grace to emotional challenges. I didn’t give myself that grace, when I was struggling with things that would have eased if I’d only had the courage then to talk about them. If I can be, both wounded and survivor, right there in class with my future-minister friends, I might be able to help them see that pain is okay. You get through it. And what’s helped me, and healed me, more than anything else is love.

I needed to learn this, too. I have so much less fear now—and also less acceptance for the fears I do have. I know that I am a survivor. And I am human. And I know that the only way to help anyone through fear—my own self included—is to sit right there with it. You can’t yell at it to make it go away. All you can do is accept the whole person. Much harder, when it’s you.

One of the deepest gifts in all of this, is just coming to me now. I made an announcement in church yesterday, saying that I wasn’t as able to be in community as I had been, and not to take it personally if I act withdrawn. Still, please keep praying. I went back to my seat afterward. The friend next to me held me. Another reached across her, to hold my hand. We didn't talk. It was simple love, and quiet strength. I sat there, with my head on her shoulder, being held by both of them, and just let the experience soak through my skin. I knew what I was receiving. And I knew that it was easier to receive, with my head out of the way.

I can’t think as quickly, or as complexly. But my heart is even more present, because my head cannot be. It’s so much easier now, to let people love me. And that, if you knew me before… wow. I needed this. And I have it.

I really do see it as, all this and survival too. I came so close. If I didn’t have health insurance, if I hadn’t had my skin checked (and checked again, when the worry nagged me), if the tumor had fired into me as it could have at any time. I live. I may have trouble getting health insurance again, forever. I do honestly fear that. But I live. I have this life, and this work, and these friends, and this purpose.

Love me. Don’t pity me. Nothing makes you love your life, like knowing how blessed you are to have it.

Pondering

I woke up this morning thinking about a friend. She’s an older woman from my church—but older, only in age. She’s a kind, playful soul with a sly sense of humor. And she’s in hospice right now, dying of the cancer she’s been fighting for two years. I may or may not see her again.

I haven’t seen her, in fact, since spring, shortly after my own diagnosis. She had a backache that became terminal pancreatic cancer. I had a Stage II melanoma, that I used to fidget with in class before I knew what it was. I had it removed, and I survive.

She’s dying of the disease, rather than the chemo which itself threatened to kill her until she stopped it. I’m taking one of the most toxic drugs my oncologist gives—and I’m “doing fine,” according to him. He told me on Wednesday that I’m “cancer-free.” I knew that he only meant now—we won’t know if it’s real, until it stays gone when I finish the treatment. Still, I got to hear that. And it made everything feel more possible.

I’m thinking about disease, capriciousness, death and survival, grace, love and time. I don’t know if I have any conclusions; I’m just sitting in this space. I’m fine, really—I’m well, except that I make myself sick at my doctors’ direction, so that I don’t get clinically ill again. Elisa is also fine, surrounded by love and held in God.

There’s something in that, that’s holding me.
***

I’m also trying to find capability within disability. I can walk as well as ever; standing exhausts me. If I sleep a lot, and drink enough water, I feel only tired, and not ill. I can follow a thought, and have a conversation, if you let me take my time. I remember quickness—but because I’ve temporarily lost that, doesn’t mean I can’t function. I function differently. And I’m still trying to work out how.

Someone said in a comment to my birthday post, that she’s glad I can turn outward because it says to her that the meds aren’t affecting me as they used to. That’s a false perception. I care as much as ever about people and things beyond myself. And I’m so much more withdrawn now, even if only socially. I just don’t have the energy to engage easily. I have permission to leave my three-hour class early whenever I need to. I do, because after listening to an hour and a half lecture, I don’t have it in me for a small group discussion. My brain hurts, just trying to pay attention. (And when I "pull my hair out," these days, it actually comes.)

Socially, I seek old friends because they’re easier to be with. The presence of certain faces comforts me, even if I don’t actually speak to them. I’m always afraid I’ll be perceived as rude by new people, because I don’t have the energy to get to know them. And I don’t care anymore, to follow intellectual discussions over lunch.

I have to stop telling myself I can’t study, or write, because it’s becoming a prophecy. But my brain doesn’t do what it did. This isn’t ADD. It’s trying to stand up, with a two-ton weight on your lap. (I read the epistle in chapel yesterday. In English. And I had to read it five times in my head, during rehearsal, before I grasped the sentence structure. While holding on to the podium, for balance.)

But can I still create things? Yeah. I’m blogging right now. It just takes more time. Words don’t come easily in the right order; meanings get jumbled. But I’m enough of an artist that I get into the puzzle. I know it’s temporary—I’ll get my brain back in July. I feel like I’m not losing myself completely, if I at least do this. Because I still can do this. I have to write prayers for next Friday—and I’m fairly sure I can. It takes a different presence, than pure intellect. My head has to struggle to be here. My heart, just is.

It’s very strange, to be as well as I am and as sick as I am. Most of what manifests isn't illness, but exhaustion caused by the drug. I control how sick I make myself, and for how long. I twist the pen to the right dose; I push the needle into my thigh. I know that if I stopped, I’d be completely capable within two weeks. And I know that I won’t even consider doing that. I can sacrifice competence now, for the possibility of life without cancer.

That choice shows me how much I love this life.

What I want, is to keep the energy and curiosity to be open to what this is teaching me.

I still control so much. And I expect to dance back into health, next summer. I am still, so powerful.

Oncology update

I proposed a support group for students like me--not that I'm aware of any. This is the e-mail I sent to the faculty, to let them know I'd done so. [The actual proposal followed.]

It serves as a reasonable update, so I'm posting it here.

Hi faculty,

I won't make a habit of crashing your list. I'm trying to start a support resource, both for myself and others. I want you to know about it, in case issues come up, say with your advisees. I sent this out to the student list earlier this afternoon.

How am I doing on treatment? My hair's thinning, but I don't think anyone really notices yet but me. I'm losing weight, but I needed to. The only thing I can really complain about is utter, debilitating exhaustion. I sleep--and nap--but it's never enough. Academically I have no business being here--I don't have those capabilities anymore. (Imagine being up all night--for months--and then concentrating, reading or writing. That's my brain right now.) But my health insurance is tied to school.

One of the frustrating things is being told constantly that I look great--and knowing that "great" is very relative. I can have a conversation, though if I'm interrupted I'll lose my thought completely. I can write a reflection, but it takes me all day. I can do heart-work at one in the morning (my field ed is at the Night Ministry); I'm always that tired anyway. The irony is that if I went off the drug, I'd be mentally and physically capable again within two weeks. But that's not what I need to do.

(I just came from an oncology appointment. He said that interferon may be the most toxic drug they give. And he said I'm doing fine. Which apparently means, I can get out of bed. I'm not depressed, and I'm only slightly nauseous. There's nothing you can do for fatigue, but sleep. If I were anemic, they'd transfuse me. He said my hemoglobin is better than his.)

Oh, and while none of you have mentioned my behavior in chapel, I know it's noticeable. I rarely stand through the Eucharistic Prayer anymore, because it takes too much concentration. While I can walk, standing still is exhausting. I pray sitting down.

While I have you: Every one of you has had my back, since I was diagnosed in April. I need your support, and I know that I have it in all kinds of ways. I can't thank you enough.

peace,
Kirstin

I am old, Father William.

more animals

Heap good wishes here.

Journal reflection

We write weekly journals for Field Ed. I wrote this today, and it seemed worth sharing. The week's questions:

What are some hopes you have about your upcoming year as a seminarian?
What are some fears?

I’m both exhausted and wired from last night. I loved it, and I can’t wait to go again. I postponed field ed to grow into the sense of call that propelled me to school. (God said, “Go; figure it out later.”) My friends are passionate about their parish ministries. Other experiences along the way—primarily two trips to post-Katrina New Orleans—turned me sharply outward. A talk with [one faculty] last spring, after I’d spent all of January in NOLA, helped me to see that I’m really not called into a parish. I’m called outside. I’ve been thinking since last winter of starting a chaplaincy for homeless people.

Obviously I need mentors. We’re not taught, in the classroom, how to do ministry on the margins. (I get frustrated when that’s perceived as strictly a diaconal call. Deacons rock. I want to be a priest to people who would never walk into a mainstream, middle-class parish.) And now I have them, in [the field ed instructor] and the Night Ministry staff. I’m surrounded by good, passionate, skilled people. I know I’ll learn what I need from this. And I’ll know where to go for more. This experience will feed the next.

I’ve been chomping to get out of the tower and into the world, since I got here—even as I held back from that leap until I knew what to jump into. I’m really ready now, and really eager to go. I know that my call is to the forgotten, and the exiled. Those are my people; that is my place. This is where I belong.

I learned in NOLA, and I heard (and felt) again last night: everything starts from presence. You show up. You open yourself; you listen. You let God, be. Even I can do that. Specialized skills will come.

My hope is to stay open and to keep this optimism. I know something about poverty; I know I have lots to learn. I only need half-time credits (thank God); depending on how my health holds up, I can give a lot. I’m going into this year with medical unknowns; all I can really say is, “Let’s just see.” I know I’ve put myself in the path I need to be. I’m doing my heart’s work, and I know God is here.

I’ve often had trouble juggling everything a seminarian juggles. With a lighter academic load, I’m hoping to stay better afloat.

My fear is obvious: sickness. All my tests were clean, last spring; a skin check yesterday turned up nothing (save one small, unusually dark mole). I’m trying not to worry about cancer. I’m exhausted all the time, and slightly nauseous, from treatment. I constantly feel as if I’ve been up all night. Going to bed earlier hasn’t helped, as much as naps do. I am trying to take good care of myself.

I feel in the rational sense, “Okay, you know they got it.” But right now I have a 50% chance of recurrence, even with clean tests. My doctors tell me not to worry, even as they say I’ll be free in five years. The first two years are the diciest. I do feel like I’m walking on a balance beam.

After you’ve been told (over the phone!) you have cancer, and lived through that first week of not knowing how serious it is… I know I still look open, alive, joyful. I am, and in some ways more so. Cancer gave me gifts. But I’ll never get that happy-go-luckiness back. I’ve gained a profound appreciation for life, and a deep awareness both of self and community. I have an empathy that I couldn’t have touched before April. I’ve lost an innocence that I can barely imagine now.

I’m not afraid of death. I’m nowhere near dying, even if I were afraid. I think I am afraid of being debilitated. Even as slightly as I am right now—exhausted as all getout and oddly able to function at 2 a.m.—my limits are much more obvious than they ever were. I’m not the reader, or the writer, that I was. Sleep is a strong temptation, and I’m not in a good rhythm yet. As a worker, I’m thoroughly inefficient. I’m just going to keep trying, and see how I do.

And yet, I am afraid of the crisis line. Being out at night, meeting people, doesn’t faze me. There is no fear, only a curious openness; a ready calm. I’m completely jazzed about the Open Cathedral. Talking with someone I can’t see, who is calling because they need to have a particular conversation and I’m who they get, scares me. I’ll learn it and I’ll do it and I may even become good at it—right now, it’s a foreign beast. But I’m going to be trained in October, however I feel about it now.

There’s a quote on the wall, opposite the crisis line phones: “Do one thing each day that scares you.” I know something about true fear, now. Getting re-acquainted with non-mortal fear—recognizing and accepting the feeling—is a curious place to be.

Night Ministry

I walked around with the Night Minister last night. Had a great time. It was quiet (Tuesday), so he mostly oriented me to the Night Ministry, and to the neighborhood, and told me stories. We met a few people.

I felt safe. He's big. If I ever want to walk alone, I'll be allowed to, but not in the Tenderloin. They go out in other neighborhoods too.

I love the idea of being the presence of the church at night. It felt right to me. The only thing that really scares me is the crisis line--and I'll be trained before I'm on my own there.

So, a good beginning!

Earthquake

We just had one. The building shook for about two seconds. It was neat.

First one I've felt in... a year or two. I really like the harmless ones.

Back to New Orleans?

I had a conversation over IM with a friend there this morning. She and her husband evacuated to Atlanta; it took them 21 hours to get there because the governor of Mississippi closed I-10 east. Said husband is recovering from major surgery. They’re not home yet.

I asked if I could do anything besides pray. She said not yet, but to check with ODR. I e-mailed them. I’m too frail to build a house; I feel constantly like I’ve been up all night. I have time in January, but I don’t know if I could afford the trip anyway. But if I can, and there’s work I can do, I’d go back in a nanosecond.

We’ll see what happens.