Elisa

I hadn’t realized it had been ten days since I'd written. Time blurs when you’re always sick. Thank you, all who have dropped by with thoughts and hugs. I need them, and appreciate them.

I’m just back from Reading Week; rather, I came back yesterday. I spent the first weekend of it at the Ranch, hosting and having a really great time. I walked outside as much as I could. (Yes, Margaret, the roses are still there.) It took me forever to make it up the hill to the peace pole, but I got there. For the first time ever, I didn’t leave a prayer—I just sat with everything around me. And I walked around the refectory playing count-the-friends; I knew at least somebody in each of the groups.

Came back that Sunday night to go out and do field ed. Again, I’m in the right place. I love the work, and the people. The hours suck, but I knew that.

I spent the rest of the week with A. in the valley. I really wanted and needed to catch up on work—but instead I took a lot of naps. I don’t regret them.

I would have stayed this weekend and taken care of the cats, or perhaps gone back to the Ranch, but I had to come back for another training last night, and Elisa’s funeral this afternoon. She died on Monday. I miss her, and I’m more sad now than I had been. The service itself was wonderful—though crowded, and hot. I really, really wish I’d seen her more. Last I saw her was about six months ago, at church, shortly after my own diagnosis. I came back in the fall, busy and sick, and kept meaning to send her a card but didn’t do it. By the time I was back, my rector told me that Elisa had almost too much company. I didn’t talk to the person at church who was coordinating her visits. I wish now that I had just seen her once in the last while.

I’m not even sure what I want to thank her for—we weren’t even all that close. But she had a way of seeing people. And, she was funny as hell. In a sly, dry, blunt and honest way.

I know it’s a cliché, but you only have people while you have them. Notice the gifts all around you. This is what matters. Give your love, and your time.

I escaped a much more dangerous diagnosis by sheer dumb luck. I had the tumor for at least two years. Nobody was expecting me to get cancer; least of all myself. It happens. Elisa died. I live.

Love the people around you. Be a gift to them.

I’m still here.

There are things I’ve been thinking about and actually would like to say—but I don’t have the energy. I’ve been dragging all week, even more listless than usual. I’m not sure why; it could be that I haven’t recovered from walking to BART three days in a row over the weekend, or the sickness that’s going around (and which I have no other symptoms of).

I get used to one kind of malaise, and it changes. I hate that.

(By the way, BART is three-quarters of a mile from here. Downhill going there; uphill coming home. That’s nothing, in my former life.)

I’m sleeping a lot, though; I guess that’s good.

My numbers are great.

I had a blood test this morning. Almost everything was in the normal range. My liver’s better than it’s been in months. I was sure it was going to be wonky; it absolutely is not. One number is a few points higher than “normal”; the other is right where it should be.

The great news: my liver and bone marrow are doing their jobs, despite the assault I’m inflicting on them.

Which means, the fatigue simply is. The nausea (slight, thank goodness) and loss of appetite (mercurial) simply are. I’m so used to the nausea that I have to remember to count it—and really it’s more just urpiness. Lack of appetite means weight loss—still not a bad thing. (My comfiest pants are officially falling off—but they’re size 12. I’m hardly tiny.) I’m down to about my pre-seminary weight now, judging from the pair of pants I put on to do laundry, that hadn’t fit in two years. They feel fine.

Hair loss continues, but I’m not bald yet. It looks slightly thinner on the top of my head. My rector told me last week, about some people from my parish who are dyeing their hair purple for Advent. It’s a fundraiser for domestic violence awareness. I said, “I am in, with whatever hair I still have in December.” We joked about spray-painting my head.

All I can really complain about is worsening fatigue. For which there is no treatment, save rest. I can still walk long distances (essential both for lifestyle and for field ed), but I have to stop more often. If I’m standing still, I’m looking for a wall. And of course, my brain continues to be muddy. Church and chapel can be hard—not only because I’ve stopped trying to stand and pray (too much concentration), but sometimes the people and words and noise just blur, and overwhelm me, and I withdraw. I don’t have the energy to keep up. Classes and workshops—I go because I have to, and I’m thankful for my voice recorder.

I’ve still always done well, one on one. Which, again, I’ll have to do for field ed. That is work I really want to do—let alone, have to.

[If you want to be helpful, please don’t mention herbs or alternative therapies. They’re not tested against interferon. I’ve been advised not to take them, and I’m taking that to heart.]
***

I’m getting a headache, but I want to write this down. I’ll come back to it later:

Yesterday, I went to the Open Cathedral. I was able to stay standing (against the plastic folding table that we use for an altar, then a lunch line), pouring orange juice for people.

That's a big deal. The work really energizes me. I was standing on my own even afterward, talking to people I’ll work with.

I had a startling experience afterward, as we were packing up. Someone rode down on a bicycle; I introduced myself, and we got talking. He had had "sun cancer" (his term) much worse than mine. His mouth and nose were twisted, and he lost an eye. He lifted his sunglasses, and showed me the patch.

I looked up at him, under the brim of my sun-proof hat, and I stopped breathing. He said the exact same thing I do—it makes you refocus, value your life. I'm still thinking about that, him, how comparatively (and truly) lucky I am. I had, and have, good care. You have to know what you're looking for, to see the marks on me. Sometimes I really hate the treatment—but I have access to it.

Yes, you can have blessedness and terror in the same instant.
***

I’m also thinking of how often I complain about feeling like crap. Interferon is not fun. The most frustrating thing is that I’m always exhausted, and I can’t function cognitively like I used to. My doctors have me on watch for depression; I have a history of it, and this drug can apparently throw you into a tailspin without warning. It hasn’t happened yet.

My mood is fine; actually, I’m emotionally healthier than I was before the cancer. There are reasons for that, and graces in it. But I’ve been feeling, lately, too negative. I’m just so frustrated with the limitations I now have.

I need to turn that around. I realized this weekend that I give myself the shots, in a hurry, and don’t pray over them. I need to start. Supporting my healing in this backwards, weird way, making myself sick to keep myself well… it just needs to be held in holy space.

Why haven’t I done that, until now? I don’t know. But I still have nine months of this. The grace in that, is time to learn what it’s teaching me.

I’ll get my brain and body back, in July. But I won’t be who I am right now.

The hardest thing

...is the unpredictability. Today was really low-energy: I went to class, but was only physically there. I didn’t want to talk to anyone. And I took a three-hour nap in the afternoon. I wanted to go to a Race and Religion forum in Alameda tonight, but I knew that if I went, I wouldn’t get Friday’s prayers written or a field ed journal (due last night at midnight) done. I don’t want to do them now; I want to go back to sleep.

I haven’t done the field ed journal because I had a headache from hell all day yesterday. By the time I remembered it, I had four hours—but had just come in from a workshop and was way beyond functioning. I went to bed, instead. The headache was directly related to interferon. The symptoms I get are exhaustion and soreness. I also hadn’t drunk enough water.

Today was supposed to be a functional day—such as I have them. I don’t know whether I was still affected by yesterday’s headache, or doing some honest-to-God work on Monday wore me out. That’s the thing—I have to listen to my body, but I don’t always know how to work with what it’s telling me. I have to learn to find capability within disability—but I never know what my limits are going to be. I can’t necessarily keep to a plan.

I still look fine. But I’m not. I honestly miss the days when my faculty would yell at me for having late work. I fully deserved it, and I knew it, no matter what I said at the time. But I was completely capable. Nobody would ever treat me that way now. They know I’m doing well just to go to class, for heaven’s sake.

For awhile I was afraid of trying, academically, because I was afraid of not being able to think or process or read or write. I broke that barrier the day I read for an hour, told my advisor, and she cheered for me. I don’t have to be brilliant. I just have to show up. The expectations that weigh so heavily on my peers, are not on me.

Nobody else tries to do chemo and school. I mean, come on. This is new for all of us.

I’m really behind on one particular thing. I know I could ask the faculty to step on me, and he would. (I already fear trying his patience more than I have.) But it wouldn’t help. This isn’t a self-discipline issue. The assignment itself is negotiated down as far as makes sense. He’s given me tons of grace already. I just need the energy to work on it. I did that for an hour the other day. I worked at the limits of my concentration. Gave myself a headache. But it felt so good to be able to try.

I need a few more hours like that. And today, I just felt like a turtle. My shell was down. It was not coming up, for the world. I didn’t feel ill—I just had no energy. I couldn’t engage with anybody or anything, and all I wanted to do was sleep.

I expect to be sick tomorrow; I took the shot tonight. But today, I really wanted to do my work.

Some days feel so positive. Some other days, I’m close to crying just from frustrated tiredness. The hard thing is not knowing, which day will be what.

I’m working on balance—being kind to myself, doing what I can, not pushing myself too hard and not coddling myself either. It’s hard, when I owe people projects. And when I know how much they’ve stretched for me.