Still okay, still here

I’ve had more company this week, than I have in most years. I’m exhausted from people, though I love my friends; and steroids (given to counteract swelling caused by radiation), and this is the first chance I’ve had to catch up with myself. I’ve got bread rising in the oven, and it’s a blustery Saturday. I’m trying to settle down to write. A went to a quiet day at her church, so we’ve both had some good alone time.

Radiation’s been easy on me; much easier to take than chemo. I have one more treatment, on Monday. The hardest thing about it is the steroids. I’m on a low dose, but they wreak havoc with my sleep. I go down around midnight, and am invariably awake by 3. Sometimes I doze for another hour or so. I get up at 6:30 to be at the cancer center by 8. (We’re both low-maintenance, but we share one bathroom. I’m the first up, because wiping down the shower makes me cough so I don’t do it anymore.) I lie down on the table and they bake my head, 45 seconds a side. We’re home by 8:15. The treatment itself is astonishingly easy; the steroids are the only reason it’s hard to endure. Sometimes I manage to nap later in the day, but not well. I don’t know how people on higher doses function at all.

I had my head shaved on Monday, because radiation irritates my scalp so much that I felt like I had fire ants crawling through a Brillo forest on my head. (I don’t think it helped, that my hair came in rough after chemo.) A friend played with my hair that Friday, and that was the last day I could stand it being touched. The last straw was when I accidentally touched my shirt to my head, getting dressed Monday morning, and yelped. Margaret had given me a recipe for homemade lotion, and I had to get at my scalp with something.

Here’s the recipe, the way I changed it. (She used baby oil, and more of it. I like the final product thicker.) After three days of using it, the pain started easing. It’s that healing itch... but it’s better than a burning rash. My skin’s clearing up, too.

Bathtub Skin Lotion

1 oz. almond oil
1 oz. vitamin E oil
a bit less than 2 oz. aloe vera
one tube (2 oz) lanolin

Mix it up in a food processor or blender. Apply to irritated skin. Feel soothed immediately.

I haven’t had time to go head-scarf shopping, so I’m wearing a purple and black tie-dye bandanna right now. (It keeps the salve off of everything else in the house.) I feel like a pirate warrior. I feel astonishingly healthy for being as sick as I am. I know the steroids give me extra energy, but please. I have freaking brain metastases. A cough that won’t go away. And I can do anything.

I wonder how long I’ll feel so invincible? I am so sick, and I feel so well, other than being generally exhausted from not sleeping. If you don’t look where my hair used to be, you’d never know I have stage IV anything. My soft-tissue tumors are covered by my clothes. My eyes look alive. I’ve gained a bit of weight because the steroids make me munchy.

Physically I look well. Spiritually I am well, and that’s obvious too. I am living in the moment. I get to embrace now. I have time, now, to inhabit the moment that I live in. Worry, yes; fear, when I think about how one dies of brain mets. (Unless I win the medical lottery several times over, they will kill me.) But grace, love and joy in every moment I choose to see them. You don’t live like this when you’re physically healthy. I was never this awake to grace.

Yes, I want more time. I know my prognosis, and I don’t want to die. But the quality of now, redeems so much. I’m not asleep anymore. I know that I’m loved. I don’t take time for granted. I’m truly happier than I’ve ever been. A friend says she senses a new peace in me. She’s right. I never had that, before. I seek it now, and I’m loving being here.

I don’t recommend a fatal disease as a way to wake up, but it happened to me, and I accept it. I’m more alive than I’ve ever been. I wouldn’t trade it for time that didn’t matter to me.

Would I like to take all these things I’m learning and loving and living in, and go on with a good long life? Yes, in a minute. But I don’t expect to get that. So I take what I know I have, which is this present breath. And I find that I do have time, in this exact now, for real life. Time to breathe, and time to say thank you. Time to walk in love.

It’s grace and gift, and I didn’t do it. I didn’t teach myself this; I never would have thought of it. This only can be God. I turned to God when I was afraid not to. God met me in love.

When I was well, I had dry spells all the time. I’d go without praying—in any form—for months, and feel guilty about it. Connecting with God felt like work. Now, it’s as easy as noticing the light. I make time because I want to. A takes me to radiation in the morning. We get home; she makes her lunch and goes to work. I light a candle that a friend gave me, and I sit down on the couch and do Morning Prayer, out of the BCP with canticles from Enriching Our Worship. (I tried other rites, and settled into this one.) I do it because every morning God meets me there. I do it because I want to say thank you—and once I get going I don’t stop until I’m empty. I do it because I need that connection. I do it because I want God and me to be friends. And we are.

A and I do Compline from the New Zealand Prayer Book every night. We used to think we couldn’t pray formally together because we’d laugh too much. (We’ve never in our lives said a straight grace over dinner.) We’ve taken to this, and we love it. It connects us to each other, and to God.

It’s a simple, gentle, peace. I’d no more skip these times than skip Eucharist. This connection keeps me grounded, keeps me fed, keeps me truly alive. And I’m finding it now, when grace and love and peace and time mean what they never could have meant before.

All I can possibly say is thank you.

I mentioned I’d had a lot of company. I came down with the brain mets, and lost my sense of chronos time. My symptoms now are no worse than when I was diagnosed, but I couldn’t have known that would be. (And I don’t know how long it will last.) It started with Olympia friends who may as well be family, taking the train to spend last Saturday with me. My old minister, their friend (and across the street neighbor for decades) sent music along with them for me. It happens to be a group of these friends chanting the Beatitudes in Aramaic. Which is cool, because the sender is herself now a Sufi. Monday, my mentor from seminary and her wife came over from the Bay Area. We went to lunch at a Greek place in town (giving me baklava cheesecake twice in three days), drove around town looking at violins (more on that later), and Molly played guitar for us while Liza slathered my head for over an hour with the lotion I’d just made. I think I had a day off (I’m not looking at my calendar), then my big brother from seminary came and we spent the morning talking on the couch. Then another friend from the same place, whom I’d just visited on my walkabout in SoCal, took the train up and spent a night here. We talked, went walking in a county park, and ate a lot of sushi.

All of them are friends for life. It’s wonderful. I love them, and I’ve loved having them here. I also had no idea how exhausted I’d be on steroids. That’s a lot of company in one week. I want to see everyone. I’m also ambulatory and able to drive, right now. So I’d really like to keep seeing people... but as a steadier stream, not all in one week! I and we will have to work that out. I’m going up to Sac to see a friend on Wednesday. Her job is in Honduras this year, so we don’t get to see each other much. I’ve never seen her let the weird get to her. She’s stable and grounded and so very good for me.

Tuesday is doctor and medical social worker appointments. I need to go over Medic Alert paperwork in person with my doctor, and I want to ask him how we watch me now. What kind of signs should I be alert for? Or should I just live and try not to worry? (I want to know, though, how likely it would be for me to feel well and start having something like seizures. I know that things can happen when you don’t expect them.)

I think I have most of the rest of next week off. I really do need to balance social and catch-up time. Friday, my friend Kat is flying up from Phoenix to spend the weekend here. I just spent a week with her on my walkabout.  We’re planning to go to Santa Cruz and play on the beach, even though it’s supposed to rain. We’ll go to church in Fremont where my friend will be presiding, and go exploring in the Bay Area until it’s time to go to the airport. I can’t wait to see her, and I’ll have had enough of a social break that I’ll be able to be all the way present and it’ll be fun. I’ll be tapering off the steroids by then, too. (My last radiation treatment is Monday.)

I mentioned looking for violins. A and I went to see Robin and Linda Williams at the Palms in Winters, last week. We were sitting there listening to them, and I leaned over to her and said, “I need a goal that’s fun. I’ve got one. I want to play old-time fiddle tunes.” I’ve never touched a violin in my life. She surprised me by not falling out of her chair. So I’m going to do it. I’d been thinking about it off and on for years, but certainly I wasn’t in the position to actually do this and take lessons. Now, it’s a part of living in the moment. Do what you love and what you want to do. I can practice when she’s not home. I may or may not get out of the dying-duck stage. I don’t know how far I’ll get. But it’s something fun to focus and work on, that takes my mind off of “Having a fatal disease sucks.” It’s less emotionally grueling than the ordination process, which I’m still committed to in between bouts of panic and new treatments. It’s something just for me. I can probably find a teacher on Craigslist. I don’t know the local old-time music scene, or even if there is one—but if I can get to Sac or the Bay Area, I can play with people when I have the faintest idea of what I’m doing. That kind of community would be an awful lot of fun.

So that’s the news from here. I’m doing much better than I thought I’d be. I’m hopeful and alive. And genuinely happy, in a host of new ways. Bathed in grace and hope and love. Keeping the wild dogs at bay, at least for now.

Thank you all for being with me, loving me and praying with me. Your embrace means more than you know.

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.