…but I’m still kind of creeped out.
The needle itself is small and doesn’t hurt; the meds kind of burn. But once I get used to all the little steps and pieces, I’ll adjust to it.
Three times a week, through next June. But at least I only need bloodwork done once a month (not weekly like it has been).
My liver, for purposes of medicating the rest of me, is fine. I start injecting myself tomorrow.
I wanted this; I wanted to be able to tolerate the full treatment. But I’m strangely sad right now. I think I’d be happier if I were done.
I had my last infusion today. I went in at 9, and was home a little after noon. Slept until about an hour and a half ago.
A blood test Sunday will tell us next steps; either I go in Monday for self-injection lessons, and follow that regimen three times a week for a year, or I’ll be done. It’s up to the toxicity of my liver. I know it could go either way.
I just finished a routine I kept with the daily regularity of a part-time summer job: get up, go to the infusion room, be treated, go home, sleep it off. Self-injections would continue that mindset, in a smaller way: make me sick to keep me strong; sacred challenge in the epi-pen. Go through my Monday as normal, poke, go to bed. Repeat every Wednesday and Friday.
(I never thought of the infusions as sacred. I kept my head down and forced myself through them. I didn’t have the energy for any other approach.)
I’m preparing myself for the idea of being done with cancer treatments. I don’t even know how I feel. In some ways, I’m fine; yay, the worst is over. I’m also still sort of shattered. Not in the sense of falling apart all the time, but shellshock. “WHAT was that all about, and what am I doing here?” (“Here” being bed, in my best friend’s house, resting from treatment, rather than working like all of my peers. And here, in this psychic space that few of my friends really know.)
Cancer interrupted my life with a howling wind. It taught me and it changed me, and it gave me some good gifts—it also devastated my basic sense of trust that each day will come, and go, and be followed by another. It seems so random—I’m young, healthy, strong—yet it came with the force of intent. Not to kill; as far as we know this didn’t invade my body. But to change.
Changes in habit: sunblock and hats, daily. Every time I get ready in the morning, I’m going to remember this spring and summer, and where I’ve been.
Changes in mindfulness: body and life are gifts. Do not forget that.
If I’m clean for five years, I can be done. That’s a long way from now. Oncology and dermatology visits will remind me.
(Pic from here.)
Sometimes I’m afraid, still, and sometimes I’m not. I don’t fear death, but the disease process of cancer, if it returns. Had a conversation with a friend last week, partly about mortality. Mine is in my face now like an African warrior mask, trembling, challenging me. “Be alive.” It has no intention yet of migrating to some subtle awareness in my back pocket.
I want that warrior mask right where it is, for as long as it has things to teach me. But sometimes I miss the ground I used to walk on, also. I didn’t know I was taking health for granted; it had never been taken from me.
I’m going to be working with this for a long time.
Right now I’m not sure I have the energy to write this. I’ve had this window open in Word for about the last hour.
I’m on half-doses now, and haven’t had any interferon in two days (yay weekend!), but I still tire easily. I can function when I need to, in apparently short bursts. I’m only slightly nauseous; the Zofran controls that very well when I take it. I still feel like a limp dishrag, a lot of the time. I needed a nap yesterday, and never took it. Right now I probably ought to be sleeping.
One more week in the infusion room; then I start shooting myself (bang). A typical weekday:
I get up, and A. cuts my fruit for breakfast. (I can’t get my heplock wet, and it’s always in one or the other wrist. It comes out on Fridays.) I assemble the rest: milk, yogurt, cereal. One of the weirder things I’ve developed is a texture-aversion to dry, crunchy grains. So, no more Grape Nuts for me. A. got me some organic corn flakes (the only kind they had) from Trader Joe’s. Those are borderline okay.
She goes to work, and I run my bath. (We share a bathroom.) I wash as well as I can with one hand and a washcloth. The other arm hangs out to stay dry. (Some midweek evening, she washes my hair for me.) Then I drive myself to the infusion center.
The room is ringed with chairs; nurses’ desks are in cubes in the center. They tell me which chair to go to. I wrap a shawl around me, over shorts and a T-shirt. I get out my phone, iPod, and a book, and put them on a shelf next to the chair. (Each chair has a TV, but I never watch it.) The medical assistant takes my temperature, oxygen, and blood pressure, and brings me a cup of juice. She gives me a warm lap blanket (honestly a glorified sheet, out of the dryer). If it’s a Monday, she wraps both my forearms in another warm blanket, and I wait for the nurse to come.
On a Monday, the nurse frowns over my unsociable veins, and asks if I’ve had enough water. She finally pokes one or the other wrist, on the same side as my thumb. She puts the heplock in, or just plugs me into my IV fluid if it’s later in the week. I get a liter of hydration, dripped into me over two hours. I read or listen to music; sometimes I talk to my neighbors. I might try to nap, but it’s too bright, busy, and noisy to sleep there. One or the other pharmacist always checks in with me, and nurses pass by and say hi. I had two visits with a social worker last week; the first I’ve met since my diagnosis in April. (One more reason why I like my current oncologist; he set those meetings up.)
About an hour into it, the nurse comes by and gives me my pills: two Tylenol for fever, a Benadryl in case I react to the infusion, a Zofran for nausea. I take them while she’s standing there. She might come by one time later, to tell me how much longer I have. (I usually can’t see the screen on the IV pole; it’s turned out toward the center of the room.) An electric pump keeps the fluid dripping; if I need to go to the bathroom, I unplug the cord from the wall, wrap it over the top of the pole, and walk there, pushing my IV. The bathroom door’s never locked, so I knock before I go in.
When the hydration’s done, the pump starts beeping. My nurse comes and shows me my meds, making sure my name and the dosage are right. One of the nurses always asks my name; last week I was Joan of Arc. We laugh. They also always give me the same package insert, daily, with the side-effect information. I know them by now (and how!) but they’re required to by law.
She hooks up the bag of interferon, and it drips into me over half an hour. Then she unplugs me and tapes my hand so I can go home. I never hang out there, after; I have to get home before I get sick.
The effects are more subtle now, but they still happen. I get home, set up water by the bed (if I didn’t that morning), change into pajamas, take an Ativan, call A. and let her know I’m home safely, and lie down. I might sleep three or four hours. When I wake up, I’m still fatigued, and I might be just starting to raise a temperature. My fever usually abates by bedtime, leaving me feeling exhausted and beaten up.
The first round of these, fever and nausea knocked me down every day. I’m on the right med combination for the nausea, now, and the aches are not what they were. Now, I’m just fatigued a lot of the time.
I’m also three times toxic, as of this afternoon. My liver spiked much faster than last time. I know that if I’d kept the other oncologist, and let her continue giving me the full dose, I’d be over the limit (10x) now. We don’t do anything where I am, but watch me. Still, I’m a bit concerned.
Anybody have any good liver-detoxing tips? I don’t feel relatively bad; I just want to be able to continue with this treatment as long as I can. It’s the only thing that’s been remotely proven to work against the cancer I had.
Existentially I’m doing fine. Physically I’m sapped. But things are okay.
I'm tired and feel beaten up from interferon fever; this is a slightly edited e-mail that I sent last night. The news is good.
I got a new oncologist in the Valley. He listens! A. went with me. He listened to both of us (though I was feverish, achy and miserable), and answered our questions. He left the room for a good ten minutes, to research something. And he asked how the department could improve.
We're dropping me to half-doses, because my liver went toxic (it's normal again now). My old oncologist prescribed no change. The manufacturer's website reads, in case of liver toxicity you reduce the dose by half. I got really emotional in the infusion center; I thought they knew what they were supposed to be doing, and I don't want to get so toxic that I can't take this anymore. (If your liver enzymes are 10x too high, they stop you forever. Mine spiked to 5x normal.) I'm willing to be sick--with a reason. If they could have told me why they were continuing the full dose, I'd have done it. I didn't know that was even a decision I could make, and I was afraid of choosing wrong.
Will spare you the details of pushy nurses and pharmacists, and an oncologist I couldn't communicate with. (Literally. It wasn't about getting my way.) I'd been wanting to switch docs anyway, but couldn't get in until next week. My new doc squeezed me in today, at the last minute.
He listened. He answered both of our questions. My self-injections will be proportionally less, as well. I asked if they would still be effective. Yes. They start you with a lot, and whittle it down to what your body can do. My liver's sensitivity means, my body knows it's in there.
Will I be sick in the fall? Yes. But I won't know how sick until we transition me (in two weeks), and not as sick as I thought I'd be, or as I would have been.
Yay and alleluia. The food restrictions are lifting, also--they apply to traditional chemotherapy, not this. I can't have sushi while I'm still having infusions, but I can have fruits/veggies, raw and with their skins on, whenever I want.
A roller-coaster day, that ended well.
I was given a gift yesterday, that I’m still completely amazed by.
I gave the giver the link to this blog; she’ll probably read it again. I don’t want to embarrass her too much. I’ll keep it brief: I’ve met this person twice; we both feel like we’ve known each other a long time, and she offered me a key to her house.
She did it to help me with fatigue when I’m sick again and commuting a lot, and probably just because she wanted to. She listened to an impulse she’d had all day, and followed it.
You want to know how to be open to the universe? Hang out with the people who hang out with me.
Do you know what it’s like to look into a bowl of sorbet, garnished with a raspberry and a mint leaf, and know it’s likely the last raspberry you’ll have for a year?
I do. This was me last night, at dinner. My prediction isn’t turning out to be strictly true; I asked for more raspberries this weekend, and I’ll get them. (I could eat a box in two grabs, if I’m not mindful.) But as soon as my white count goes down again—and it will—I can’t have another. Or a fresh salad. Or any raw, unpeeled fruit or vegetable.
I can’t describe the taste of a raspberry; you’ll have to go and eat one. They’re a summer treat, anyway. Friends in my hometown have a raspberry patch. I used to pick them whenever I wanted, but only in July. I never grieved them when they were gone; blackberries came on their heels. Where I came from, those grew everywhere, in every ditch and abandoned patch of yard.
I worked (volunteer and paid) at the food co-op in Olympia, WA, for nine years. Once, and only once, we had organic peaches from France. I think the staff got tired of all of us teasing. Other than bananas, it’s a local-food operation. You eat what’s available. I didn’t shop anywhere else, because I always had a working-member discount. If I wanted berries on my granola in the winter, I shook them out of a frozen bag.
I live in California now. There’s no such thing as seasonal food. Everything’s available, all the time. I think I’ve bought fresh raspberries in November, to make cranberry-raspberry sauce for Thanksgiving.* It would never occur to me to buy some just to eat them, in winter—they’re too expensive.
Summer fruit belongs to summer. I can still have a peach, if it’s peeled. But knowing that my body and my doctors won’t allow me to eat whatever I want out of a garden, raspberries and fresh greens and tree fruits are all I want. Forced asceticism changed my desires, fast.
And I’m not remotely a “foodie.” I like to eat well, but I don’t cook, ever, and I’ve barely ever bought groceries since I moved into the seminary dorm. I’m happy when I chance into a handful of raspberries, or fresh pesto, or portobellos—but it’s not an experience I ever make happen for myself.
I think this line of thought has to do with coming back into my body, temporary though I know that is. I’ve been feeling better every day, and stronger. I’m noticing sensory things.
At the Ranch last Saturday, we had Eucharist in the pavilion. Both bishops were here, as were more than 200 others. The wine was local; the bread baked literally in the next building over, the refectory kitchen. It wasn’t random pita bread, and it certainly wasn’t “fish food;” it was simple, well-practiced, and exquisitely good.
My liturgics teacher told us a story, last fall, about being in Africa. I don’t remember the country; I’m sure he told us. They don’t have wine there. The water’s dicey. So they used Coke for communion. Not because they could get it from any random vending machine, but because they couldn’t. It was special to them.
The elements stood out for me last Saturday not because they were rare. Local wine flows like water here; I can look across the valley and see grape vines on both sides of the Russian River. The kitchen staff bakes bread all the time. They were special to me because I don’t eat this way often. And because I know I’m healing. Also, God was present in the extended Ranch family: some had worked here; many had retreated here, the kids had come to camp here. This place has given to all of us. Many of us knew each other. I’d met lots of people, living here for a summer and hosting odd retreats through the year. There were people I didn’t know, too. We came together, in community.
I’m thinking of becoming a third-order Franciscan. I’m sorting through reasons why I would and wouldn’t do it, and seeing what makes sense to me now. The things that hold me back are mostly financial details, small things that can probably be worked out. I like the idea of a structured rule, and a global community. I love the whole idea of giving yourself completely to serve the world. Loving without question. “My God, my All.”
We’re supposed to be Christ for each other; that’s part of every Christian’s call. I am of the subset, Episcopalian. Every time I say the Baptismal Covenant (Book of Common Prayer, 304-5) I reaffirm my promise to “seek and serve Christ in all persons, loving my neighbor as myself.”
That’s huge. Intimidating, really. I go weeks without thinking about it; I forget to do it, daily, in the world. But I’ve been thinking about fresh fruit, and bread, and how a friend’s particular embrace healed me.
I get tons of touch, in my daily life. Less so now because I’m around less people; but in general, people can hardly walk by me without touching me. It’s a cancer thing; I think that my living that out in community made life more real for many people. I get a lot of hugs, and I get a lot of love. S. was different because he crossed a room to do it, and because he took time. I think he saw that I was, in that moment while B. sang about resurrection, moving from victim to survivor. He supported me through that motion.
I don’t know how to be Christ for others. I think that’s a lofty aspiration. I do know how to honor the God within another person, if I remember to do it. And I know that if I take the time to look, not just at someone but into them, with respect and love for all that is holy and broken, I can give gifts that are as common as bread—and as rare as raspberries.
The trick, is looking where I don’t want to.
*Easy recipe: 1 pkg cranberries; equal raspberries; water to cook in, and sugar to taste.
The infusion center caught me. I’m at the Ranch right now; they called and want to start infusions again on Monday.
I know it’s for the best (sigh), and maybe I’ll only be half as sick this time (crossed fingers). But I really wanted to do camp. And I just don’t want to deal with this anymore. I know the infusions are only for two more weeks—but I hate that I can’t schedule my own life right now. They call; they get what they want. It wasn’t, “Can we start you?”; it was, “We’re starting you.” As is their right; I really can’t say no.
Not if I want to be done with cancer, anyway. Grrrr.
I’m still up from just being here, and I’m definitely still healing in all ways. I’m just cranky and growly right now. My body started feeling better; now it feels really good. I’ve missed my own energy, and I want to keep it. Once I resume these, I’m sick for a year. I want my own life back.
I knew I’d have to go back, and I was preparing for the idea that it was soon. I just wanted a little more time.
Grrrr.
The chapel bell rang; off to Eucharist with the Benedictines.
… and yes, Margaret, the tree house is still there. :-)
I’ve been feeling so much better. This past weekend transformed me. A week off of treatment, gradually getting my body back, has been wonderful. Hanging out in the city, and at the Ranch, healed me spiritually. I have some things I’m still working on—but I’m back in touch with joy.
My blood test came back Sunday with my liver enzymes still elevated. In the long term, two weeks off of treatment is not good news. I want my body to tolerate this; I don't ever want to have to deal with cancer again. In the short term, I'm both sick enough and well enough to do what I want. I get a break, and a taste of summer.
I got to see a friend make her life vows as a Franciscan, at St. Aidan's last Thursday. It was her day—and the order’s—not mine. But I hadn’t been home in a month. It felt so good to see people. Friends of my friend are willing to help, out here, but I don’t have a community. (There’s no topography, either.) I got to be surrounded by so much love.
The service was beautiful. Sr. Lynne looked so happy. She was vowing poverty, chastity, and obedience forever—but there was absolutely no element of withdrawing from the world. It was the opposite. Living in monastic community is not my call—but I got it. She made this choice, precisely so she could serve. The more I think about it, the more I respect it, and her for following that path.
There was a potluck after. I was six days out from treatment, and I finally could eat a decent dinner. (I had no appetite, most of the week.) I didn’t eat a lot, but I almost finished the food on my plate. I had lots of good conversations, and I got lots of great hugs. I’ll have to be gone for the coming academic year, for field ed. I’ve only been a part of this parish for three years—but they have become my home. Reconnecting was healing for me—and really good for all of us.
I slept that night in Berkeley, at the home of classmates who had come to the liturgy. I hadn’t been expecting to see them. They had just come back from a month away, and still were fine with a last-second houseguest. Their bodies were still on Central time, and I wake with the light in the summer, so we all staggered awake around 7 and had breakfast together. We talked about their trip, my health, books we’re reading. Just a random seminarian conversation, with lots of laughing.
They also have the coolest shower head ever—it’s huge, round, and drops water straight down on you. It’s like washing in your own personal (warm) rainstorm.
They went to a parade in Alameda after breakfast on Friday (the 4th), and I drove up to the Ranch. Again, it was so good to be home. I hadn’t been there since before my diagnosis. I don’t remember when the last weekend I’d hosted was; I think in early April. The core staff all knew what was up with me. Family camp was finishing, and I had friends there from last year.
“How are you?”
“Um. Well. They found a melanoma on me in April. I’m both sick enough and well enough to be here.”
People met me on a real level. Sympathy, yes, but more. When they told me they’d pray for me, I knew that in that promise, they already were. They knew how life-shaking my news was—and they looked me in the eyes, present and strong.
Family Camp had a talent show, the night I got there. I was sitting on the balcony in the pavilion, listening to a friend (camp colleague from last year) sing “Alleluia, the Great Storm is Over.” You can imagine what that song means to me, now. I caught a friend’s eye; I think he’d just come in from outside. He came over and hugged me, closely, for the rest of the song. We barely spoke; we didn’t need to. I was almost in tears. It was grace, more of the random love that kept being tossed to me over and over and over.
I’d gone up so I could work the big event on Saturday. After it was over, I felt like my body would never move again—but it was wonderful. I really didn’t do that much work, per se; I sold raffle tickets for maybe a total of an hour. But being up there, being awake, alive, and loving the Ranch as much as I do, counts for PR.
My bishop’s wife invited me to share their picnic blanket. I still don’t know how she knows me—she recognized me at CDSP graduation—but she has an amazing gift for people, and she’s interested in everything. She wanted to hear my story. She asked real questions. Both of them listened. We talked a little bit about Lambeth, too, and camp, and whatever. It wasn’t an official type of anything; I didn’t need to impress them (read, him). It was a social visit. How often do any of us get to do that?
The Swifts took two of us who were staying over, out to dinner. Have you ever heard of fries with truffle oil and pecorino? You can get ‘em in Healdsburg. We didn’t try those; I still want to. But the food we got was good, and I had my appetite back.
I drove back here Sunday, had lunch at home, and my friend went to the stabbery (Kaiser lab) with me. My results came back improved, but elevated; I get another week to do what I want. I’d offered Sean three days of work this week, if I could do it. I can, and I’m going up today so I can host all day tomorrow through Friday. I love Benedictine week. They’re peaceful, sweet people. Mealtimes are taken in prayerful, Quakerlike silence. My own spirituality is more Franciscan; I’m much more the activist. But I love them.
Pray for the monks at New Camaldoli in Big Sur. They were evacuated from their home, and sheltered by Franciscans. I won’t see them this week; they’re hanging out with their hosts.
I'm perversely hoping that my numbers stay wacky long enough for me to work BREAD camp, which starts in a week. They’ve improved enough that I wouldn’t be surprised if I have to go back to the infusion center Monday, though. I still have a few symptoms, but nothing like they were.
I’m reconnecting with joy, and that's a good thing. I still have two weeks of infusions; I'll take half-doses when my numbers recede to normal. Then the self-injections, 3x/wk for a year. But right now, I'm feeling energetic and alive.
I realized in the car, driving to the city on Thursday, that I'm not afraid anymore. I was scared witless for three months. I think what did it was a conversation between A. and me. I think it was I who said something about dangerous things to die of. I don’t remember how she responded. I realized, they're only dangerous as long as we're alive.
We know where we’re ultimately going. Sickness can be painful and uncomfortable, sure. Injuries and accidents happen. I realize that I’m speaking from privilege: I have the most optimistic prognosis there is. But I know that nothing ever can threaten me again.
I don't recoil from my scar anymore. I touch it now as a sign of strength. I'm starting to reconnect with God again, too. I always knew God was in my community; I couldn't pray for myself. I still can't ask outright, "heal me," (though spiritually that's happening), but I can say, "thank you for life." I spent an hour at the peace pole on Friday, praying just that. And praying to re-learn how to pray, with all of me.
I'm still thinking about what Carol taught me. “God will either heal you, or change your heart so you don’t need it anymore.” I don’t have any idea what is or isn’t in my body. But I am not afraid. I’m getting myself back: different, but clearly me. I know things now, that I can’t articulate yet—but that I’d been needing to learn for a very long time.
I would love to know that I’m healthy forever. But none of us have that assurance. And I really don’t think I’d trade any of this.
Alleluia, the great storm is over.
I’m headed to the Bay Area now, to wander around Berkeley a bit (read: talk to an herbalist at Elephant about de-toxing, and maybe get a haircut) and SF to see a friend make her life vows as a Franciscan. I’m off to the Ranch tomorrow.
I don’t know yet where I’m sleeping tonight; I’ll ask Berkeley friends when I get there if I can crash with them. (They’ll probably say yes.) In any case, I’m not taking my laptop with me.
I will pack my camera, if I can find it. (It wasn’t in the pile I moved to the vacuum closet yesterday.) And I’ll be back on Sunday.
Yay for escapes. I so need this. Peace to all!
From Sean at the Ranch:
Hi Kirstin,
The cookbooks are $35.00 plus tax. They are hardbound, with a binding that lays flat to be helpful on a kitchen counter.
The can be purchased at the Cathedral bookstore, at Levin and Co. in Healdsburg, at Copperfields Books in Petaluma, Santa Rosa and Sebastopol and at the Ranch.
At the Ranch we charge $40.00 which includes the tax, because we can't make change. If someone wants us to mail a book to them it costs $45.00 to cover the postage.
***
The Ranch address is:
The Bishop's Ranch
5297 Westside Rd.
Healdsburg CA 95448
(Put "cookbook" on the envelope; it will get to the right person.)
Because my liver is toxic—and I don’t feel as bad as that sounds—I get to go back to the Ranch this weekend!
There’s a donor thank-you, and celebration of the Swing Pavilion, on Saturday. I’m going up Friday, will stay with the Swifts (there are people in the usual staff housing), and come back probably Sunday morning. I’ll have to get my labs re-done Sunday, anyway.
They asked me to help ages ago, before the cancer came. If I were still taking infusions, I couldn’t. I’m not all that physically strong now; I’m going to go help register people, and help board members sell cookbooks. (Yes—they’re finally out!) It’s going to be an insane day, but fun.
I’m still waiting to see how my body and the calendar work out as far as BREAD camp, which starts in two weeks. But I love that place so much, and I miss it. I talked with Sean for about 20 minutes on the phone this afternoon, and it just felt so good.
Yay for my toxic liver! Yay for the Ranch!
