Saturday, September 27, 2008


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 And I’m so much more withdrawn now, even if only socially.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.


Two Auntees said...

I know the exhaustion, having difficulty thinking and comprehending are so frustrating. However, the one thing that you can hang onto is that once you have completed your treatment these symptoms will go away. This is not meant to trivialize what you are feeling now but a positive thing to hang onto.

Know that you are in the thoughts and prayers of many people.

Kirstin said...

Thank you so much, for the prayers and the touchstone.

I'm so tired--but I'd really rather be strong. I know that I'm surviving.

Deborah said...

Surviving is necessary - and the prayers are for thriving and for joy. While you wait for full health and strength to return (and I know it's a long wait), be assured that you are held in love.

Grandmère Mimi said...

Kirstin, you are so very brave. I know that you don't feel brave, that you feel as if you're barely putting one foot after another and typing one word after another, with perhaps little sense or coherence, but you come through loud and clear to me. And you seem incredibly brave - to me.

I wish you prayers and blessings in abundance.

Kirstin said...


Mimi, that means so much. Thank you.