Written on Ash Wednesday

Mindful time. That’s what I’m engaging in right now.

I’ve been working on planning my memorial. Actually, I started in September, when I didn’t know whether biochemo was working, felt awful most of the time, and realized how much I cared about what will happen in that liturgy. I put it away when my tumor growth stabilized.

I picked it up again last week. Brain mets make planning how to leave, urgent again. I’ve done most of what I need to, besides pick the readings. I haven’t really gone through the BCP service and plotted every step, but I’ve suggested elements. I have a list of hymns I like. I’ve thought a lot about who I want to participate, how. I’ve specified the people who can finish it for me. A friend asked when she came over here with cookies, what I’d been doing. I said, “It’ll sound morbid to you.” And I told her. Her own mother died with little warning, so she appreciated that people will know what I want. I’m ambivalent about making myself do it—but it actually becomes a life-giving activity, when I let myself get into it. I like being able to give that kind of thought to my leaving.

Who really gets time to plan their own ritual of dying? Who is conscious that every time they do something, it could be the last time they experience it? Who lives constantly with a greeting in their mouth, and goodbye in the back of their mind?

Me. And I’m still navigating how to do this gracefully.

I made a date last Friday with a friend, for this coming. A week in advance. She lives about an hour away. Every other time we’ve done this, I’ve gotten myself there, we’ve visited, I’ve gotten myself home again without incident. (I e-mail to tell her I got home safely, but that’s because I’m social like that, and have usually been thinking about some aspect of our conversation on the drive.) Between us, I’ve been the more confident driver. I could count the times I’ve driven there in the past few months, if I thought about it; every couple of weeks or so. Needless to say, I know the way. It’s not far off the freeway, halfway between here and Berkeley. I used to drive twice that distance without thinking, round trip at least once a month.

So we made the date. And she said, if you need this to be at your house instead, I’m there. I knew she’d say that, because we’d talked about the possibility of neuro events and me not being able to drive. I haven’t been taken off the road. (My oncologist told me I might want to minimize it. He didn’t tell me to stop.) I’m not having headaches, other than from tension when I think about my head. I have small sensory “static” episodes that come and go, every few days now. (My left hand and foot feel tingly for about half a minute. The frequency and length have increased since I began radiation, probably due to it.) Nothing on the order of loss of consciousness; no motor impairment. Still, I feel like it could happen anytime. And my friend wants me to know that she’s there for me wherever, whenever I need her to be.

Waiting for the big one is no way to live. I know that, and I can’t stop thinking that way anyway. I can plan reasonably confidently for tomorrow. A week away always gives itself a “maybe.” Meanwhile, I appear and am completely capable.

I talked after church on Sunday with a friend who’s an oncology nurse. She’s got her own set of mind games for fighting cancer. I see where she’s coming from, but they don’t work for me. She asked if I could take the contingency out of my plans: i.e., don’t say I can do something “if my health holds up.” I told her I feel better being honest about it. And I do.

When I get my MedicAlert bracelet, will I feel better about driving? Probably. I’ll feel more secure in general, and I wish I had it right now. If I got a bad headache on the road, I’d pull over. I’m not going to be stupid or unsafe. The sensible thing to do would be to call 911. I don’t want to be coded. I can stipulate comfort care only, but there’s a form that has to go through my doctor first, and then I can get the bracelet and know my wishes will be respected. A found it online, and e-mailed it to me yesterday. If I were to call 911 in California right now, they’d be legally bound to take extreme measures. I don’t want that. If I’m going, let me go.

If A (being my health care agent anyway) took me to the hospital herself, I have an advance directive that empowers her to speak for me. She knows what I want, and agrees. I don’t have anything on paper that says, comfort care only please. I don’t remember there being a space on Kaiser’s form to specify it. But I did all that, and my will and power of attorney, in the blur of last summer’s diagnosis.

I’ll take care of MedicAlert tomorrow. Today I needed a writing day, at home.

A and I have tickets for Fiddler on the Roof in April. I’ve never seen the play. We know there’s a chance we might not make it. We’re living in hope that we will.

A friend I just stayed with on my walkabout in Arizona, is aiming to come for the last weekend in March. I know what I want to have happen. We’ll do whatever on Saturday, bring her to church in Fremont where my friend will be on Sunday, go to the beach after and fly her home. It’ll be a blast. What’s weird is that’s two and a half weeks away, and I can’t count on being intact then. I won’t know whether radiation is working, for weeks after I’ve finished it (unless symptoms tell me otherwise). I’m taking Temodar (oral chemo capsules) to supplement it, and found another soft-tissue tumor on Sunday. I was completely discouraged, frustrated, and out of sorts the whole day, and haven’t really recovered yet.

Feisty, yes, I am. I have to hold onto what hope I can find, and I have to be tenacious and never let it go. I know I still look invincible. I can still speak like I am. My hair's back in, kind of wildly curly.  I’m cognitively whole, and I’m as completely myself as I’ve always been. But I can also begin to see peripherally, the disease closing in on me. I’ve been fighting this for three years, next month. I know where I’ve been. The treatments I’ve taken either didn’t work, or worked only as long as I took them. I know how wily this disease is, and I know how well it has found its way around my defenses. I still hope to survive. But I don’t expect to.

I coped with it better when it wasn’t in my brain. My skull is an enclosed space. When those things grow, there’s no room for anything to move over. 75% of stage IV melanoma patients develop brain mets. I didn’t know that, until I had them. (You protect yourself from the knowledge that you don’t need, until you need it. They travel most easily from the lungs.) Once you get them, you can live long-term if everything responds to the treatments you take. I can hope that I will, but I can’t count on that. My oncologist said that my lungs have time. I live on hope gymnastics.

They don’t normally do follow-up imaging after radiation; they go by symptoms to see if you’ve responded. I’m going to ask for an MRI anyway. If the brain mets are under control, there are clinical trials I can get into. But my radiation oncologist told me to wait weeks. Radiation keeps working after you finish going in for treatments. If I do it too soon, the difference won’t be apparent.

It’s all a testing-trying-waiting game. It gets emotionally and physically exhausting. If this were five or ten years from now, there would be tools. I’m happening at the same time as all these early, promising advances—but too early, to help me so far. You trust what your doctors tell you will help, because you have to place your hope in something. But I look at my own history, and I know exactly where I’ve been.

*****
Which is why, today is Ash Wednesday and I’m avoiding church like the plague. The last thing I need to hear is, “Remember you are dust, and to dust you shall return.” I know that very well, already. I don’t think I could bear to have ashes smudged on my forehead tonight.

A is going out in a few minutes to her service (where she’ll say the omitted alleluias under her breath); I’m staying home. Other than her ashes tonight, we’re both avoiding Lent altogether. We’ve been in it, because my body is. We don’t need to practice self-denial. We’re getting message after message, denying us time.

I need to claim Easter now, because I have no idea if I’ll be here on the liturgical date. My hope is in the Resurrection; I’ll be damned if I’m putting that off for six weeks because the church tells me it’s time to. I’m with the Orthodox; why are we ever proscribed from praising? God’s nature does not change because of our season.

What am I doing for Lent? Saying alleluia and living in the moment. Seizing the joys that I can find. Looking for perfect nows. Spending time with friends. Being alive and awake in love. Doing Morning Prayer alone and Compline with A, as I have been; curling up in the words and rhythms and resting in the presence of God. Being hopeful when I can about my body; recognizing that I can live the way my body is right now. Knowing that life and breath are gifts, even when I cough so hard in the morning that I gag getting out of my shower. Taking the time I have to be conscious and whole, to be really where and with whom I am. Walking in the presence of beauty—because it’s easy to find when that’s all you’re looking for.

Being. alive. now.