Max just called to tell me that L is being discharged from the hospital, as we speak.
The good news: She's feeling better.
The doctors still don't know what's been making her sick. With her history, that's important. They're going to rest up at L's mom's house until L is well enough to travel (she has residual effects from earlier neurosurgeries), and then come back home to the Bay Area. Then they'll reconnect with her infectious-disease specialist here.
Max thanks everyone for your prayers; she says it's the most important and effective thing we could have done.
I thank you, also.
Saturday, May 31, 2008
Max just called to tell me that L is being discharged from the hospital, as we speak.
…of what the day in surgery was like. I haven’t been able to get to it. Woke up this morning and thought, yeah, it’s time.
Thursday, May 15. My doctor had been called for jury duty the day before, but I hadn’t heard anything further about it, so I went with the assumption that things would proceed as scheduled. I knew there was a possibility I’d be admitted, and that I wouldn’t know for sure until after the final imaging. I needed to be able to communicate with school, in the event I was caught overnight at the hospital. I’d gotten a PDF copy of the directory, a day or two before, because I’d long since lost my paper one. I already had my advisor’s cell number, from when a friend had borrowed my phone and followed us to the Sanctuary. I looked up my other teacher’s (the dharma teacher from an earlier post) and added that. I wrote them both, and told them I’d call if I couldn’t e-mail. Both had been eager for information, and I knew I’d want to talk to them.
I threw things in an overnight bag, and left it on my bed. I was wearing a button-down shirt, the type of which I’m still more comfortable wearing. (I haven’t worn a t-shirt in two weeks, except for sleeping.) I had my iPod, Kaiser card, and credit card in my pockets; they tell you to travel light. (I also brought Take this Bread with me, but I barely read a page.) I ran downstairs, as I’d lost track of time.
My ride was a blog-friend I’d met twice; once at the Ranch, and once when we had sushi. We live in the same town, but we go to different churches. I don’t remember what Susan and I talked about, but I do remember laughing.
She dropped me off at the emergency entrance, and I checked into the Ambulatory Surgery Unit. I was early; it was a few minutes after 9, and I was due at 9:30. The waiting room was a teeny little closet with a very loud TV, tuned in to a children’s program. (It wasn’t Sesame Street, but puppets were teaching reading.) Two kids were in there with their families; one was a child with Down’s, about six, with a metal halo immobilizing her head and shoulders. She was fidgety and busy as a six-year-old is, but didn’t seem nervous.
I was. Nervous, that is, as I still didn’t know what would happen. I tried to read, but couldn’t focus; besides, the TV was too loud. I didn’t have to wait terribly long, though. A very kind older woman (I think she was a nurse) came and got me, and let me in to Room 8. Surgery patients have their own waiting rooms. It is easier, when you’ll be there a long time. It was maybe 10x10, or so. Three white walls, and one institutional green (sage, with an attitude of avocado). A wallpaper border ran along the top of the green wall (and maybe all around; that was the wall I was facing.) Two padded chairs, a regular chair, a TV mounted from the ceiling, a clock, and a bathroom.
She told me how to prepare, and said she’d come get me when it was time for nuclear med. She closed the door behind her, and I changed into the gowns. (You wear one, and tie the other around you like a cape.) Following Margaret’s advice (in the comments) and my own, I stayed barefoot as long as I could. I was really reluctant to give myself competely to this, and didn’t want to wear institutional socks. I don’t even think I looked at the book, after that. I put my feet on the floor and breathed, trying to calm myself. Tried to pray, but couldn’t. Listened to music for awhile; I had Sally Rogers’ “Mother Courage” on repeat:
Courage, mother courage
Let it raise you up when you’re feeling down
Courage, mother courage
Courage to plant new ground.
I was anxious and scared, and I did not want a neck dissection. (I also was under the mistaken impression that I didn’t have time to be admitted. I had planned to finish at least one of my classes. My faculty would have been fine.)
I was due in at nuclear med at 10; I think she came and got me about five minutes before. I put on the socks (brown, skid-proof) and was soon glad I had them, because the floor was cold and there was a ramp down to where I was going. I walked there alone, checked in, and waited at least half an hour (I think it was more like 45 minutes.) I read a travel mag about Pittsburgh, to pass the time.
The tech finally came for me. In looks and demeanor, he reminded me of the nurse-practitioner I met in NOLA. I liked him. He asked if I had any questions; I said, I kind of know how this works because my dad used to do it, but yeah, tell me. He explained the procedure: he would inject radioactive dye into me, and watch where it went.
Then he led me into the room, and asked whether I’d rather be sitting in the chair where I was, or lying down. I said that sitting up would be okay. He said, “Needles in your ear? It might be easier for you to lie down.” So I lay on the table, on my right side (left ear up) in a fetal position.
The first time I went to NOLA, I got what I thought was the worst acupuncture ever in my life, in this same ear. (It’s not supposed to hurt.) I was wrong. He injected me four times, beneath the tumor. The dye burned, as he’d warned me it would. I breathed in a way I’d never had—primal and deep, almost behind my diaphragm—to keep from yelling. And I re-thought the whole idea of a cartilage piercing.
He was nice about it, and patient, and I was kidding him about being a horrible acupuncturist. Still, it was less than fun. He left me on the table for ten minutes, while the dye did what it would.
I lay there, alone and feeling cold. I wanted a blanket, but there weren’t any in reach, and no one was there to call out to. I had a mantra: “Your community is with you. God is here.” And I knew they were. Their prayers had carried me up to that point, and I still felt them with me.
I was too scared, to pray in regular words. After awhile, I started whisper-chanting “Veni Sancte Spiritus” over and over and over. He finally came back for me, and led me across the hall to the camera.
I sat on a low stool, with my ear and neck as close to the camera as I could get them (picture something like a basketball backboard for three-year-olds), moving as little as I could, for four minutes. Then I got to stand with my arm on top of the camera (armpit lymph nodes facing it) for the same amount of time. Then sit still again, but this was faster; the sentinel node was a bright green light, and he was tracing lines, looking for others. He finally poked me with a Sharpie where my sentinel node was (directly beneath my ear), and let me go.
I got back to my room; I’m not sure what time it was. The first nurse I’d met came to see me. She was surprised that I didn’t have an IV started, as she’d told me to remind them to use my right arm. Well, no; he didn’t inject me there, so there was no reason to start one. The anesthetist came to talk to me, and left, and my doctor came in.
He greeted me, “Hi. Your PET was fine.” I breathed, finally. We chatted a minute about the jury misadventure. I showed him the dot that the tech had drawn on me. He said that was great. He told me again what we were going to do, and said that he’d look at the nuc med films himself. I repeated, “So you’re not going to dissect me?” He answered that it was unlikely.
With a clear PET, and that reassurance, I knew that I was okay. It was about noon when he left, and surgery was scheduled for 1 p.m. I called my faculty. I told her my PET was fine, and she breathed. I told her I had about an hour left in medical jail (the waiting room), and that I’d be home that night. We talked for awhile, and she told me I sounded strong. She said I could call her at home on the weekend, if I needed or wanted to.
We were still talking when they knocked on my door again. I had to abruptly get off the phone, and go with a nurse who was supposed to start my IV.
Three pokes later (i.e., vampire bites), she’d missed two veins entirely, and popped a third. Grrr. I went back to the room and called my advisor, interrupting her in a meeting. I told her my PET was fine, and she breathed. I told her I’d be home that night; she said she’d pass the word along. I think she said I was in everyone’s prayers (if not then, the next day for sure, when I saw her at the healing Eucharist). We got off the phone, and I called my best friend, who could log in here, and told her my news. Shortly after, the anesthetist came to get me. She was kind, strong, and competent; a bit younger than I, with a Northern European accent.
I put on the paper hat, and we walked down the hall together. It felt very strange to walk into an operating room, and to do it still untethered. Dr. G (surgeon) introduced me to everyone; there was a whole team in there. I lay on the table, and they put a warm air-blanket over me, and wrapped my legs in something that vibrated. Anesthetist started my IV, in my left hand. I yelled “Ow!”and scared her—then I said yes it hurt, but that didn’t matter as long as she got it. She had. Dr. G told me they were doing what they called a “wake time-out,” and I probably wouldn’t remember it. He asked my Kaiser number and I rattled it off. The anesthesiologist said, “Oh, she’s on it.” Well, yes; I’d been living this for three weeks. Dr. G asked again if I was allergic to any medications. “No, for the sixth time, and I’m not pregnant either.” We laughed.
He confirmed that we were working on the left side, and wrote “Yes” there in purple marker.
I liked him when I first met him; he’s about my age, and has a kid-like enthusiasm. But he scared me a bit because he’s such a science-geek. He seemed overly eager about neck dissections. He’d eased that fear, in the waiting room. I knew he was competent, and that he wouldn’t do anything he didn’t need to. The last thing I remember is him reading out notes to the team, on top of me (abdomen as table): you’re doing this, you’re doing that, we’ve got this, let’s go. I fell asleep assured.
I was in and out of wakefulness forever, in the recovery room. Dr. G came by and told me everything had gone well, and that he’d see me in a week. Nurses came by and did whatever they were doing. I don’t remember any pain. Nor was I tempted to touch the dressing. I just faded in and out, for a long time.
They called Susan and she got there way before she needed to; I wasn’t awake enough to go home. (I went under at 1:15, for about a two-hour operation. Got home at 7. That puts me in recovery for about 3 ½ hours.) They'd given me really good drugs, and lots of them; ear pain is different. I couldn’t/wouldn’t turn my head to talk to people, but I was aware of them, and could hear them. I never was completely asleep—I was conscious—but more and less out of it, in waves.
Finally when I was more awake, they gave me ice chips. I asked for crackers. They denied me, because I’d been queasy. (I still was, but wasn’t fully feeling my own body yet.) Eventually they let us go home.
I don’t remember anything about the ride, except that I was competent enough to click my own seatbelt. She zigzagged in some new ways, but I roughly knew the roads, and whenever I opened my eyes the campanile was in front of us. I don’t know why I worried or cared—except maybe the car was making me queasier.
We parked on the street; it was Community Night, right before dinner. I wanted juice, and was together enough when I got there to realize it was also an alcohol night, so to be careful what I reached for. Susan walked with me to the tables in the courtyard, and I got a bottle of sparkly berry juice. A couple of my friends stopped me, to ask how I was doing. I couldn’t figure out why they were looking at me so cautiously, until I saw myself with the dressing on. We walked by George (music director both here and at her church) and we both said hi, and she rode the elevator with me to my floor. She dropped me off at my bedroom. One of my friends had left a get-well card and a wind-up, fire-breathing nun at my door.
I unpacked my pajamas and my laptop, and took forever inching into my clothes. My balance was gone, and I was queasy again. I checked the day’s emails; there were many, and most were personal. I answered what I could, wrote a quick blog post, and tried to go to sleep.
But I couldn’t. Not only were the drugs mixed up in my system, but I felt loved and protected, strong and safe. “It’s off me, I don’t need to fear it anymore. God and my doctors and my body and my community are healing me.”
I just kept thinking, “Wow.”
And I didn’t know how strong I felt, or was, until I took that picture of myself with the cat-dish. There is woundedness, gravity, and joy wrapped together.
One of the e-mails was from my faculty, in response to my farewell that morning. She said all she needed to say, and all I’d have needed to hear:
“Off you go, and we’re going with you.”
It didn’t matter that I’d missed seeing it in the morning. I knew that what she said was true. My community embraced me through this entire experience. I felt their prayers that day, as much as I felt their presence in the refectory when I could see and touch and talk to them. When I felt alone, as on the nuc med table, I could remember that I wasn’t, and sense the presence around me. Their bodies weren’t with me, but their souls were. I know I’m being prayed for, from inside this very building and from overseas, right now. When school starts again, I’ll be in a different phase of this—and they will still love and support me.
That is what we do. I didn’t know it until I needed it. I am so proud to be part of this community, and thankful to them. They taught me a way to be present, that I never would have learned any other way.
I don’t know what I would do if I didn’t have not only this particular faith, or this particular community, but this deep, strong spiritual sense. Friends at school, church, and on the internet tell me that they’re praying for me. That’s as strong, as loving, and as powerful as if they could physically heal me themselves. Another e-mail says the sender is thousands of miles away, for weeks, and out of electronic touch—but that she’s sending me warmth and light. I absolutely believe in the power of that. My best friend has dreams in which she rearranges my anatomy, so that no cancer cells can catch hold in me. Her Sorcerer’s Apprentice brooms worked, apparently, to keep the cancer only on my ear—so why not this, as well?
I don’t know what my body will do, but I know that it wants to be healthy and strong. I don’t know what God will do, though a friend (pseudo-retired faculty) is giving God suggestions. But I know that God is love, and wholeness, and healing. And I know that all over the US, in the UK, Australia, Korea—the sun never sets on prayers for me.
I still don’t know what to do with God, as entity separate from community: as Creator, Redeemer, Sustainer in a world where people die of illness. I have no way of knowing whether I’m incubating disease, as we speak. Nor do you, really; nor does anyone. The difference is that I have a name for what may or may not be happening inside of me.
My prayers for myself still come out as desperate stabs. I can’t ask for anything but life, and health, and I know that’s uncertain for us all. But the love and prayers of others wrap me in the embrace of God.
In your prayers, my faith is strong.
Friday, May 30, 2008
You have to clean your room. Doing so, you find old newsletters on your bedroom floor. These newsletters have poems on the back. These poems include lines like this one:
"If you're afraid of a journey, don't buy shoes."
The poem was written by Mark Strand. The rest of it didn't touch me, really. But that line? Yeah.
Yesterday was not nearly as awful as the day before.
I woke up in better spirits, to begin with. IM’ed with a friend, as we’ve often been doing in the early mornings, and made plans to go to the Thursday healing Eucharist at her church (which I ended up not doing). Played around online for longer than I should have. Got up, got dressed, had breakfast.
Went over to the admin building to find out what I needed to keep my health coverage. (Linda, if you’re checking this, you were right.) The person in charge of these things is a friend. She was explaining to me: you can do this; you can do that; you can do COBRA (which God knows I can’t pay for), and I was getting more and more stressed—as all I’d needed was her first sentence. (“You have Kaiser, you need six credits.”) She must have sensed something was wrong; she asked if I was having a good day.
Uh, no. And I felt like I kind of went off on her a little. I probably need to go apologize, later. She means well, absolutely; we were just working at different paces, yesterday.
Got talking with someone who works for the School for Deacons (which was why I didn’t go to church). She approached me, already knowing where I was. Told me about her own health scare, and we talked about listening to our bodies. She has a gentle, healing presence that’s really good for me right now. I left that conversation feeling less afraid of statistics, and more trusting in my own body’s wisdom.
Went home and set myself to organizing/packing my bedroom. My next-door neighbor had given me four bags of clothes back in February, right about the time I got the flu. I’d never gone through them. I finally did.
There were two pairs of capri pants that I really like, that I can’t close right now. But I know they’ll fit me later in the summer, because I’m not going to want to eat. (Aside from the expected flulike symptoms, one of the possible side effects of interferon is anorexia.) I’m not going to starve myself—I’ve never been much of a dieter—but I know that for the most intense phase of this, at least, all I’ll probably want is crackers.
Damn curious weight-loss plan. (Yes, I know enough to keep myself fed, and to keep my electrolytes up.)
I posted the prayer call for Max and L, and got some really nice e-mails from friends of all of us. Thank you.
Went to coffee with a friend. Socializing is a different deal right now. She was her usual self; I knew I was really hard to pull out of me. I tried, but it took me awhile to connect with her, or to easily let her connect with me.
We have barbecues in the courtyard on Thursdays in the summer, so I went. This was the only one I’ll be able to go to; though I have permission to be here through next Friday, I won’t be. It was good to catch up with friends. Someone asked me a question, and I ended up educating my table about melanoma. They were really thankful to me for talking.
Guys, that’s what this blog’s been about for a month. I may not be able to answer if you ask me how I am, but I can talk about what’s happened to me. And I really, really appreciate you being there for me.
I came upstairs, answered some e-mails, got chatting over e-mail with Padre Mickey for awhile. Two of my friends are going to do the Panama Project. He wanted to help them have a good experience.
I love summer evenings. Even in CA, it’s light late. I walked down to Elephant Pharmacy in almost full daylight, and back up the hill as the sun was setting. It was a beautiful walk; the colors were really out, in the flowers. The jasmine was heavy; I love that smell.
I needed some vitamin E cream for my scar, and sunblock I can wear every day (forever, now). I asked someone in the skin-care section, what she’d recommend. She was really helpful. She told me what she’s heard of that works, and what mainstream drugstores carry. And she told me about when she was little, how her mom used to break open a vit E capsule to rub on her sunburns.
She told me her own family history; her mom had a melanoma removed from her back. I told her what I think I’m going to be saying to everybody, forever: GET CHECKED. My oncologist assumed that I have a genetic predilection to this, and I don’t: skin cancer is nowhere in my family history. (My grandfather died at age 77 of a heart attack, in 1993. He had some things on his head that he was in the process of checking, if I remember right. Still, I’m a good deal younger than that.) My genetic risks are fair Northern European skin, and lots of moles. That was enough.
We talked for awhile, and she took me to the herbalist a few rows down, and we talked too. I didn’t really want to rub oil all over me; I hate the feel of that. So she walked me back to skin care, and I picked up some vitamin E cream. That was what I’d originally been seeking; the conversations were gifts. I asked her where sunblock was; she showed me, and left me to my own choosing.
I was muttering to myself, rather loudly, about prices. Another shopper came by, and we got talking. I told her why I was looking: I just had a melanoma removed; need something I can wear all the time. We got talking, I don’t know how, about health insurance. I told her, I’m at the GTU; we’re required to carry it, otherwise I wouldn’t have known. She hadn’t had that requirement, in her own grad program. I got to tell her what I keep saying, over and over: school has been wonderful.
And they are so wonderful, because I let them be. I didn’t shut my faculty out, as I had done in the past (with laughably minor issues, in perspective). I told them what was up, because there was no getting out of it. They were only too happy—and too ready—to support me. They’ve had my back all through this, and I don’t know what I’d have done without them.
They’ve given me so many gifts: trust, time, their own humanity, talking. My history as an inconsistent student never played into their response to me. They’ve been concerned for me as a person, and they’ve supported me completely through this. I can’t thank them enough.
The other shopper went on her way, and came back to tell me there was a sale on hats. I looked at them, but I already have a perfectly good one. I paid for my stuff, and left.
I walked back up the hill, past the Franciscan brothers (friends of school, and of me). I thought about joining them for Compline, but I was a few minutes late, and I really wanted to be home. So I sang out loud with my iPod, and noticed the flowers, instead. I put the goo on my scar when I got home, and my neck felt so much better.
I don’t care how visible it is, or isn’t. We all have scars, on our skin or on the inside. I wouldn’t be human, or be able to minister to other humans, if I didn’t. But I feel that stiffness every time I turn my head. I’m not going to be allowed to forget.
Thursday, May 29, 2008
Please pray for Max and her partner, L. L was hospitalized with a staph infection in her neck, a year and a half ago. She's been having symptoms again, and has just been readmitted while they figure out what's wrong.
The hospital is near L's mom's house, several hours from Max and L's. Max drove down to be with her. Pray for L's strength, her health care team, and for Max as she supports and advocates for L.
Max and I are good friends; she mentored me my first year of grad school.
Thank you, and know that the prayers of all of my communities sustain me.
I needed something else to post about. I'm on the left; my advisor's on the right. I'm hatless because I was four days past surgery, and couldn't (still can't) wear my Mardi Gras hat. (I was either holding it, or had lent it to someone else when this was taken.)
Yes, I am wearing a bathrobe over my clothes. My hair is a mess because I couldn't wash it, and dry shampoo only does so much. She's in her academic gown and that hilarious hat, because we were attending an "alternative commencement" for Lizzie, who had to fly back to England the next day.
(Bathrobes were Lizzie's idea. Hats were mine. I got credit for co-planning the event; I did next to nothing, to earn that.)
What were we laughing about? Probably, other people dressed like us. Or silly-walking. Or, simply, life.
Wednesday, May 28, 2008
I don’t know if writing this will help me, but it may help for honesty’s sake. People tell me I’m strong, all the time. Maybe I am. I’ve worked through a lot, and learned a lot; and I’ve been able, mostly, to be open to what’s happening in me and around me. Today, I’m just gritting my teeth.
Crying might help—but I only feel like it when I talk, and there’s nobody really around. Maybe another hot shower, and just letting myself go where it takes me. I’m not that close to breaking—just tired, and frustrated, and I want my normal life back. I won’t get that, really, for at least a year. I don’t know how sick I’ll be in the fall. I don’t want it to impede what I do.
If sickness from treatment were all that was worrying me, I could let it go. It isn’t. I say I want my life back—but I certainly haven’t even been trying to focus on anything that’s “normal,” for the past month. I'm walking the fence again, between "necessary" and "not entirely healthy."
I could maybe take a walk. It’s kind of overcast/hazy/sunny outside. I do have a hat. I would feel as if I was attacking myself, if I didn’t wear it—but my ear is still tender.
I wear hats and sunblock in the summer, always. Not 24/7. But California is different; and I am different, now.
I have bureaucratic chores to do. I have to see what I need to do to keep health insurance in the fall, and contact the social worker at Kaiser about temporary disability. I will do both of these things. I’m not emotionally up to it, right now.
Homework. Good God, yes—with what brain? I need to do something normal, and I have these two reflection papers to write before I get sick. I really can do them; I know they’re not that hard. My teacher knows what I can do—she also knows where I’ve been.
I also have to get off this box for awhile. And my bedroom… who could focus in here?
Packing. Mildly physical (no lifting unless I want to), and possible. Let alone absolutely necessary. If I could, I’d like to get out of here at the end of the weekend, though I have an extension until the 6th. That requires working right now.
I miss my friends. And I miss my faculty. I miss having people all around me, whom I could talk with. Most have gone on to summer, already. As soon as I go east, I’ll be with my best friend—but I’ll lose the physical presence of the rest.
But I know that they still pray for me, and love me.
In my core, I’m stronger than I have ever been. But I could have never, ever, ever done this by myself. I went alone yesterday, partly because I didn’t think it would be that big of a deal; partly because I wasn’t sure who was around to ask, and partly because I didn’t want even the kindness of a friend to influence my treatment decision. What I do with my body has to be up to me—even if that’s to make it sick for a year, with risky benefits. No one wants me to suffer. I don’t see a better choice.
(Would I make the same choice now, to go alone? No. I needed a note-taker, while I was asking questions and trying to assimilate information. I remember a lot, but I wish I had all the data now.)
I want my body to know that it is loved and supported, and strong enough to fight any likelihood of dangerous cells. That’s how crazy cancer is—to love and care for your body, you consent to making it sick.
One of my teachers asked me, when I told her about my wordlessness, if I’d ever had a conversation with my body. I hadn’t, except to try to reassure it that it was loved and cared for and strong. I’ve listened to it when it’s told me I was healthy; and the clean tests tell me, I can trust it to do its best to stay so. I’ve listened when my body has told me how much it loves the wind across bare feet. I’ve listened when it told me that it loves to feel its muscles move, when I walk. I remember how healing a bath could feel, when I was not capable of hurrying.
Everything in me wants to survive this. The current round, I have. Later, scares holy hell out of me. I’m going to have to get an awful lot better at self-care, both so I can love myself through this, and so I can keep health insurance. This is going to call out of me, skills and confidence that I have never yet had.
I’m going to have to find them.
Tuesday, May 27, 2008
Walela, “Amazing Grace”
Sung in Cherokee. Beautiful. (Thank you, Paul.)
Ry Cooder, “Jesus on the Mainline”
“If you’re sick and you want to get well, tell him what you want…”
The String Dusters, “Fishers of Men”
“Rise and follow me…” Bluegrass gospel. Bouncy. You take your resurrection where you find it.
Rosanne Cash, “How to Be Strong”
“Being you, is how to be strong…”
Eric Bibb, “Just Keep Goin’ On”
“Take every knock as a boost, every stumbling block as a stepping stone…”
Carrie Newcomer, “The Gathering of Spirits”
“Life’s a twinkling, that’s for certain—but it’s such a fine thing.”
Cat Stevens, “On the Road to Find Out”
Hey, if you have to be on a learning adventure, might as well use it.
Indigo Girls, “I Don’t Wanna Know”
“Now I’m living honestly, ‘cause I said goodbyyyyyyyyyyyeee” (singing to the fear of affected lymph nodes)
Stephen Johns, “O Healing River”
I think it’s originally a Weavers tune. I like it.
Circle of Women, “Earth My Body”
“Earth, my body; water, my blood; air, my breath, and fire, my spirit.”
The really really great news: My lymph node was clean. My oncologist chased me down the sidewalk to tell me, after I left the appointment.
Not that great news: The thickness of my tumor changed my odds. Right now, I have a 50/50 chance of recurrence. With time, that goes down. He re-staged me at 2C, rather than 2B, because the initial biopsy showed ulceration. (I think that relates to growth rate.) And as clean as I look, I may not actually be; a PET can miss half a billion cells, apparently. (Stage 3=lymph involvement, which I mercifully don't have.)
He says, "Melanoma does what it wants to." I could have something in me, or I could not. A recurrence could be on my skin, or it could be a metastasis from this one. Order of likely places to metastasize: lungs, liver, bones, brain. A skin recurrence could be relatively non-aggressive, like what I just got rid of, or it could do much more frightening damage.
He brought this home, when he handed me an actuarial table of survival, by stages and years, and showed me where he thought I might be. In a gentle, compassionate way, of course--but the information was there, and is right now in my backpack.
I feel clean. But I don't know that I am. The parameters of the study weren't what I'd posted, which was what my oncologist told me. He was as surprised as I, when I told him what was in the folder he'd given me. I would either do treatment for a month and be done, or simply be closely observed. That's not enough to make me feel safe.
Studies disagree about the effectiveness of interferon, anyway: anywhere between ineffective to 20% reduction in recurrence. But this is the option.
With all this in mind, we're doing the standard treatment rather than the trial. One month of IV interferon, 5 days/week. Weekly self-injections for the next 11 months. I'll be really ill, and then just kind of flu-like. Of course this may change what I'm able to do in the fall, and through the next year.
When will I be done with this? Standard rule for most cancers, including this one: if I can stay clean for 5 years, I'm 95-98% safe.
Feeling: both happy about the lymph node, and scared about statistics. I'm not afraid of interferon flu. I want my body to fight this, and I think it already has been. I'm also aware that the only real resource I have is spiritual. I asked if there was anything I could or should be doing, besides interferon and sunblock. He answered, "No. Try not to worry."
You are my support team, and I still need you.
I know this is a lot of information. I haven't assimilated it, yet. Writing helps me do that, and it also helps me figure out what questions I still need to ask him. I'm not sure what's truly important, and what's just scary. This is what I gleaned from an hour-long conversation. I've already sent him an e-mail, asking if the clear lymph node changes anything. [Update: it doesn't. He had presumed that I would have a clear lymph node. My risk of recurrence/metastasis is still in the 50% range.]
I'll be out of the dorm in the next week or so, and staying with a friend in Stockton. I'll have another oncologist there, so I won't need to drive between there and Oakland. I'll start treatments probably the first week of June.
Thank you all so much, for your prayers and for everything else. Keep at it. I'm not so primally afraid--but I know how serious this is.
Monday, May 26, 2008
I have been where I never want to be again. But I am so very grateful to have been here.
My soul’s work is all about courage, strength, and commitment. Cancer walked me further down that path. I am thankful to have gotten off as lightly as I did. And I am thankful for everything that this past month has taught me.
I am more focused. More tenacious. More compassionate. Much stronger, and much less afraid. Very aware of the gift of my body. Absolutely, completely and totally grateful for life.
I'm also in a deep internal space. I'm both working this, and waiting to see what will grow from it.
I mentioned dharma teachings, in an earlier post. I remember walking to BART, early in this process. I never had to go to anything cancer-related alone, so I was either going to church that Sunday, when I knew absolutely nothing except that I had it, or the following Thursday to an ophthalmology appointment, by which time my CT was clean. I was on the steps leading from the Cal campus down to Oxford. I have no sense of whether it was early morning, or early afternoon. I don’t remember how I was dressed; whether I carried a backpack, or whether it was warm or cool outside. I think I remember an overcast sky.
The point is that I was either more, or less, terrified; and which, I cannot tell you. I do remember the fear; I’ll never forget it. I doubt there was ever a time in that first week, when I was not completely consumed with anxiety. The unknowing was almost unbearable.
And I remember thinking, “If I’m open to this, I can learn from it.” I asked the experience to teach me.
Did it, ever. Nothing makes you love your life, like genuinely fearing for it. Nothing has ever taught me more about being human, than sharing this fear in a circle of love.
I told my faculty immediately, when I got the diagnosis, because I had to. I needed them to know that I was not going to be able to do the work I’m normally capable of. That night, I asked for prayer on the unofficial community list. I went completely public within the first week, when I had to tell the community why we were tweaking a Rite I liturgy to add a healing rite. The best choice I made, throughout this experience, was to be (and stay) open, within the seminary fishbowl.
My teachers all gave me the space to shut down academically. They encouraged me to take walks, breathe, skip class if I needed to. They knew before I could have told them: I had to (and have to) be with this. It wasn’t even that I needed to learn from it, though I did. I couldn’t have been anywhere else.
They gave me the time to learn what cancer taught me.
Several of my classmates, and my advisor at least twice, told me that I was an example, or that I was teaching them. They used words like faith and courage. [A friend I just IM'ed with added, "resilience and joy." I love that.] I knew that I was in a position of teaching; the conscious witness I was making was simply, what it’s like to live through this. I wanted to do it well, but as to how? Nobody ever knows how. You just do it.
Another teacher told me, more than once, that I was doing well. I knew exactly what she meant. Her work with me a year ago had helped to prepare me, though neither of us knew I'd have to practice these skills so intently, for reasons much bigger than school.
I took a class in the spring of 2007, with the toughest teacher I’ve ever had. (She's also tremendously creative and resourceful, but that's beside the point I'm making.) I came back from a spring-break trip to New Orleans with my head completely turned, and I didn’t have the will or the determination to focus back on school. I flaked on a major project. My instructor confronted me, as she should have. I reacted in a way that showed both of us, how far I had to go.
She let me have the space to sort it out. Later, I accepted that she’d been trying to help me find a toughness I was lacking, that I would need both in ministry and as a fully competent human. That she valued my work as highly as she did, led me to rethink how I approached it. That she was willing to work with me on the deeper issues, gave me the support to work through them. I knew she cared about me, as a student and as a person.
I kept chewing on the issues—I worked them harder than I had any other growing edge, before cancer came as teacher and test. I’d come to her every so often, this past fall and spring, with an epiphany, an apology, a thank you, a question. She’d affirm that I was getting it, and we’d move on. She also would tell me, when she saw me looking trepidation in the eye.
I had her again this spring. I'm not good at juggling; I got the flu in February, and got more behind in everything. I went to her with questions around organizing my work. She gave me an hour, doing vocational discernment around my MBTI and a reflection paper I’d written for her. Neither of us had expected the conversation to go there; at one point, we looked at each other and laughed. But she gave me resources and ideas to work with.
My diagnosis came on a Friday afternoon before the Monday our group projects were due. I e-mailed her, fresh from crying with my best friend on the phone. She told me just to do what I could. That Monday afternoon, when my week had filled up with medical appointments, she excused me from all remaining work. She told me that I had to take care of my health, and that she prayed for me daily and hourly.
Throughout this, she gave me support; she always let me know that she and the community were praying for me. When I saw her, she’d grab her calendar, wanting to know what to pray for and when. I would e-mail her, in fear about something. She’d tell me to stay aware of myself and of God, and to breathe.
She taught me what I needed to learn. The toughness she pushed me to adopt, a year ago (and with which I had still been negotiating), translated through this experience into a tenacity I would not have known that I had. That isn’t what kept me physically well—God only knows how the cancer didn’t spread—but it kept me mentally and emotionally open to growing through this. It kept me able to be strong, when I needed to be. The grace she gave me when I felt fragile, gave me permission to do that as well.
I had that learning experience. And I had time to do the work, and to grow from it. She never brought it up, past that conversation a year ago. Doing the work was completely my choice. I did it, and I can be proud of it. When the cancer came, it tested and confirmed these skills, and pushed them deeper. I drew on that earlier work, all the time.
I am not who I was, the day before I got the diagnosis. I never will be, again. I haven’t had time to miss that innocence, or that lightness. I am so much more intentional now. More aware of my own real self, and more able to connect with others. More sure in who I am.
I never want to go through that fear again. I don’t know if I ever could be quite that afraid again, because I have been here. But as awful as it was, cancer taught me some things that I’ll still be processing for a long time. And I had the support, from many people, to learn what I needed to know.
Cancer scared holy hell out of me. It took a lymph node and a piece of my left ear, and I know how much worse it could have been. Cancer also gave me gifts: awareness of the gift of my body; connection with God through the community around me; a stronger and more authentic self, and absolute love for life. This gratitude is itself a gift, and again I am grateful.
Saturday, May 24, 2008
I just woke up from a two-hour nap, and I could go back to sleep if I lay still.
I bailed to Stockton for the weekend, on impulse. Here, at my best friend’s house, is where I’ll be staying over the summer while I’m sick from interferon. I came out here yesterday, after my class graduated. I was socially exhausted and not up for a party in Berkeley—but I needed to be somewhere other than where I was.
I drove with music, in Friday afternoon traffic. My attention was taken. As soon as I got out here, things started hitting me. Only in the head; I’m not feeling anything yet. But my mind is going a mile a minute, and won’t stop except when I sleep.
I wake up, and the first thing I think of is “thank you.” But I’ve told all the humans that, so often that a few are probably tempted to smack me. I know I’m still held in their prayer, even as the community dissipated for the summer. I’m still very much in their love. They gave me time, support, listening, and the dharma teachings I needed before I ever went into this (and that’s another post). They prayed for me when I couldn’t pray for myself. They told me I was strong—as they bore me up.
I don’t even know where God fits into this yet. Life, yes and ever yes. But it’s all too huge to wrap my head around. I am amazed and grateful. I am also too exhausted right now, to lose myself in gazing at that mountain.
I haven’t slept straight through, for a month. My body hasn’t relearned that ability. But I slept like a rock last night, except for the hour and a half that I was awake (and writing). I’m used to waking, grabbing my laptop and writing, posting, going back to sleep. Here, it’s in another room. I got up, worked for an hour, and was so tired that I went back to bed without finishing. I slept so hard, that I woke with a foot cramp. And a racing mind, again.
I’m thinking about courage and grace, God and love and internal toughness. About the teachings I was given a year ago, before I or my teacher knew I’d need to practice them as intentionally, and as early, as I did. About how remembering those teachings, and letting them work in me now, helped me stay open to the experience. About healing, in body, mind, and soul.
I’m thinking about who I was before the diagnosis; and who I am now, one month later (tomorrow) and one stain away from “clean.” I was told so often that I was an example. I knew that I was going through this in a fishbowl, and that I would be teaching what it was like to live with a cancer diagnosis. I probably put too much pressure on myself to do it well—I know I didn’t give myself enough grace, when I felt fragile. The one thing I did right, repeatedly, was to be intentionally open to and with my community. I let them know what was happening, within the first week. I asked for their support, and I let them love and pray for me. This gave them something to do, when they were worried for their friend (who was plenty scared, herself). And it gave me a web of presence. There was always someone I could go to.
My community sustained me. They held my faith, and my body, for me. When I go back to school, I want to be—and be understood to be—a healthy, healed, and whole human being. There will be some transitioning. But in that time, leaning on them was right.
If you ever face a threatening diagnosis, let your community know it. Let them love you. Let them support you. (Don’t ever go to appointments alone, for instance—and I never had to.) When you have no idea how to talk to God, let them be your prayer.
I’m going back to Berkeley on Monday, and to the oncologist Tuesday. I’ll know then, what’s ahead of me. I need to finish two reflection papers before I get sick, and clean and pack my bedroom. I’ll be back out here sometime the first week of June. Then, I’ll need lots of prayer again. I won’t be afraid, but I’ll be ill and uncomfortable.
Right now, though, I’m in a reprieve. Breathing, thinking, writing. My friend just came in from a (fruitless) search for light fixtures. We talked about how there are aspects of all of this, that aren’t real to me yet—and it was I, soul and body, who lived it. And about where God has been in all of this.
That’s another post.
Friday, May 23, 2008
Thursday, May 22, 2008
I sent this out on all the CDSP e-lists, just now. I've been needing desperately to thank my friends, faculty, and others whom I don't even know except that they're praying for me. These words don't feel like enough, but they express something of the gifts these people have given.
If I didn’t bump into you at Baccalaureate and tell you, go here. One test remains between me and "no evidence of metastatic disease." It's a stain on the lymph node that was taken from me last Thursday (along with the tumor itself); I'll know for sure when I see the oncologist Tuesday. All my other tests: CT, PET, and other lymph node screens--have been clean.
I need to thank this community. All of you have held me in prayer, love, and hope. You have carried me through the past month.
Blog-friends have responded there. My friends on campus have held me, gone for walks with me, shared their own survival stories, and listened as my own terror became amazement at surviving this, marked in soul more than body. You’ve asked how I was, and cared about the answer. You’ve told me the things I’ve most needed to hear: that you love me and you’re praying for me. You’ve started conversations with me that began with my body, and wandered through sacred boundaries, strength, and deep self-care.
My faculty have made time for me whenever I felt like talking, and listened with absolute support and encouragement. You’ve held me as I cried, and you’ve laughed with me. You’ve answered frightened e-mails with reminders that I’m held in God, and in your prayers. You’ve excused me from group work I couldn’t focus on, and let me take incompletes as long as I need them—or finish something in the fall when I get back. You’ve let me leave class when I needed to walk, and forgiven an outburst when I hadn’t really slept in a week. You've told me strongly not to push myself; to give myself the time and space I need, and to let the community care for me. You’ve celebrated with me, when the news has been good.
These are only things I’ve experienced directly. I know you’ve done more than I ever will know; I know this web that holds me. I never knew the gift of this community, until I needed it. You've surprised me in the most wonderful ways.
Your prayer, love, and support have made all the difference. Words don’t come close, to thanking you enough.
Still, thank you. By your presence, you’ve helped me heal—and you’ve taught me how to be present with others. You’ve helped me to become more deeply human. These are enormous gifts. All I can do is pay them forward—and I will.
The ear, and the incision.
1) I just got out of the shower.
2) We’re still waiting for the last stain, on the lymph node biopsy. The last thing we don’t know about is micro-metastatic disease. Everything else is clean. There is no lymphatic or vascular involvement, or anything else the test has screened for. (I don't remember the list.) After this last stain, I could be cancer-free.
They thought the tumor was 3mm deep; it turns out to have been 6. The technical information is "Stage 2B, without lymph involvement." How it got that big and dangerous without invading anything, I don't know. So again, I am so damned lucky.
I say "lucky" rather than "blessed" for a reason. People get sicker than I was, all the time. God is also with them.
I see the oncologist again on Tuesday, and should have final test results. I go back to the head/neck surgeon in a month. My ear hurts a little, and feels kind of weird; that’s normal for what it went through, just a week ago.
Thank God for dissolvable sutures.
I feel like I keep freaking out my friends (and myself), and the news keeps being good. Thank you for coming along on this ride.
Meanwhile—anybody want half a can of dry shampoo?
Note just for honesty's sake: This thought process grew partly out of an e-mail exchange, and the following post is almost verbatim what I wrote there. Edited for anonymity of the other person.
It's frustrating—but it's also fascinating. This all comes out of such a deep gratitude. It’s easy for me to thank a human being, even for gifts of deep wisdom, and to hear them receive it as they will. I may still be amazed by such gifts, for a long time. I only need to acknowledge them once, for the giver’s sake.
But to life, God, body, soul, community—to just the gift of waking up? It's like trying to birth a way of being (not of speaking)—knowing that it's only now being conceived.
I know... relax, breathe, process this, be with it, don't rush. Meanwhile everything in me is (not merely says) both "thank you" and "wow." And wants to just yell, the words that don't begin to be adequate.
How to incarnate that shout?
I don't ever want to go through cancer again. (Chances are I won't, with interferon: 70% is passing.) But all of this has taught me so much. I know that God and community are with me. I know that however the biopsy comes back, I am in the hands and arms and heart of God. As we all are. I know that I can trust my body. I know that I am alive. I can't even touch words for how grateful I am. There are gifts in. all. of. this.
This is about being, a different kind of "whole."
I’ve been told I’ve done a good job with the words, thus far. It's what I do. I know they won't stay permanently gone—this is all about expressing, with the human being that I am. They will be a piece of that, not nearly all of it. How, I don't know.
Wednesday, May 21, 2008
This is a segue from the previous post. I really can’t explain it better, yet; I don’t even fully know what I’m talking about. I’m seeing sculpting, rather than speaking; forms, whose reason for being is the pure, simple joy of holding flowers. Ultimately, breaking this life open and being nothing but “thank you.”
I know what I mean, but not how to convey it.
I am so verbal. And I'm in a place where words don't live. I need to learn to translate the absence of words into the presence of life (other forms of expression), and I don't know how to.
That may be what this summer is for... hmmm. It's like transsubstantiation, only without bread. With, being.
"Living a Eucharistic life," and all that. I would have thought that I was doing it. Like so much else since the diagnosis, I didn't have any idea.
“How are you?”
I don’t know. Even with good friends, I never know how to answer.
Physically: Recovering. Waiting for biopsy results. Healing well.
Emotionally, psychologically, spiritually: Just beginning to process, and there is so much.
Hearing this as a casual question irritates me, probably irrationally. I don’t have a casual answer. I may not have time (or want to take the time) to come up with a real one.
If you ask out of concern, I can hear it. If you’ve been connected with me through this, you know who you are (faculty and close friends). Don’t worry about these instructions. We’re already in a place of trust.
If you are a survivor yourself, or a loved one is, likewise you know how to meet me. Many have, and I am grateful.
If you don’t know me well, and you’ve never had a trauma to your body and your soul, you honestly can’t imagine. If you see me, don’t ask me how I am. Tell me you love me and you’re praying for me. How I am is always changing. Where I am is a place beyond words.
Connect with me there, and let me find ways to share with you.
I was busy, buried, and mad at the world. Now, I’m in a space my soul has never been in—and I’m being given time and grace to be here.
My friends, the class I entered with, are graduating in two days. (I decided long ago to extend my time. That had nothing to do with the cancer, and everything to do with growing up.) The semester ends on Friday. Normally, I’d be writing furiously now. Past springs, I always had late work to finish.
I have the time to be, and to process, and to live.
Got an e-mail this morning from my homiletics prof (and academic dean); she said we needed to talk about my finishing, and offered me an incomplete. I replied that I’d sent her an e-mail last night, asking for one, and thanked her for watching out for me. I went to the registrar to get the form, and bumped into said faculty on the way. She focused completely on my needs. She totally trusts me to take care of this. I know I will—but her respect for where I am, touched me.
So I’m taking the incomplete, but not extending it. I won’t be sick until after the first week of June. I know I can finish these reflections by the end of May.
Everybody has my back: friends, faculty, and those who are both. I never knew how supportive this community could be, until I needed it. I keep being amazed by that—not because I thought they couldn’t; but because they are, so completely. I wish I had a way to thank them.
I came in a little while ago, from getting gelato with two friends. We were (most of) a small group together; my dropping out pretty much coincided with my diagnosis. One couldn't come; she's nursing a sinus infection. The three of us walked down to the Naia place at Cal; got our gelato (Scharffenberger and strawberry, yum), went outside to eat. It was the first time I’d walked anywhere since my surgery. We talked a long time, about things that seminarians consider normal life. My illness and I were not the focus; nor did I want to be. It was easy, free, and fun—and the day is beautiful.
Came home to a get-well card from a bunch of people at church (thank you), and am writing this while I’m doing laundry. Going to Evensong later.
I have the time to taste this. I will have time to process it. Life is really wonderful.
Tuesday, May 20, 2008
…of how grateful, blessed, and lucky I am.
I had cancer. But I got it in school: late in the term, in this community, while I have steady health insurance. My community has borne me up. For the first few days, I felt like a pastoral-care lab rat. But we all got over it. People don’t try to take care of me, anymore—but they are still so genuine. They care for me the way I wish we all cared for each other, all the time.
If I ever doubted it (and I did), I know now that my faculty has my back. My advisor, who always was my advocate, has become my friend. She gives me time whenever I stop by and her door's open. She listens, and she makes me laugh. I checked in with my homiletics prof yesterday; she’s also the academic dean. She asked how I was, and volunteered information about how I can keep my health insurance, since I don’t need full-time credits to graduate. She’d been in a conversation about me that morning; they want to make sure I’m taken care of. She also told me that she and her spiritual director had prayed for me, that morning.
This is someone who raises sarcasm to an art form. But as I told her what I'd been through, she listened with her heart.
Another, who pushed me hard a year ago to learn a kind of toughness I was totally lacking, has been an absolute rock: always prayerful; always encouraging, always supportive. I am floored at the depth of the gift—this strong, solid core—that neither of us knew she was helping me to find, at the time. (She wanted me to find it, for ministry and daily purposes. We didn't know I'd need it, this soon or this intensely, for life.)
All three of them said, in the beginning of this: if you need us, we are here. They meant it.
I’m still waiting on the biopsy, but my other tests were clean. My wounds are healing well. And I’ll have time this summer, sprawled on my best friend’s floor, to process everything that’s happened—and then to finish two incompletes.
My community has been so generous. They say I teach them. They have taught me how to be there for others.
Cancer sucks. It’s terrifying and stressful, and it steals both your “normalcy” and your sleep. I don’t ever want to go through this again. But there have been blessings, every day of this.
I got melanoma. So far, I have dodged metastasis. I am unbelievably lucky. I don't take my life or my body for granted, anymore.
About the interferon trial: Some of my friends have been praying that I get randomized into the easy group (the month of treatment, rather than the year). I’m not really comfortable with that; it means that someone else has to take the harder piece. Pray for me, yes—but just keep surrounding me with love and support. God will take care of what needs taking care of.
Thank you all, so much.
Monday, May 19, 2008
…between clarity and pain relief.
I wouldn’t need a brain, if I didn’t have to try to work on a reflection paper. I’m only going to my afternoon class—and only because it is that class; my instructor’s been a rock and I know she wants to see me, and all we’re going to do is turn in evaluations (done; it was easy) and have social time. Oh, and chapel, too—but that doesn’t require higher functioning, just the ability to walk there. My balance is still off, but it isn’t very far, and there are railings at the stairs.
Just now, I don’t remember where I left my toothbrush. But I can’t blame one Vicodin for that, alas. I brought it back from my friends’ bathtub last night, and chose not to leave it in the bathroom, because my shelf was already too full. So there’s a Ziploc bag somewhere in my bedroom, with toothbrush, soap, and all that sort of thing. And now I get to find it. When I’m supposedly not allowed to bend.
I also ought to do laundry, but carrying it down the hall to the elevator daunts me. I have a few more days’ worth, I think. (How can I possibly not lift, for two weeks?)
I feel like a Borg, with a weird implant in me. My ear mainly tickles; my neck itches and hurts. The tape comes off in three days, yay. It’s a stiffness that’s horribly distracting.
The itch means it’s healing; and that is a good thing, she says through gritted teeth.
I have, incubating in me, a post about bodies and our relationship to them. I’m intrigued by how long it’s taking me to find my own way back in, and I’m thinking about the gift of the body, fragility, strength. Probably not today, though; judging from the mental presence that I still don’t really have.
Sunday, May 18, 2008
Got a (lovingly) strongly-worded e-mail yesterday, and I’m listening to it.
I really wanted to go to the Sanctuary this morning, and I woke up in time to throw clothes on. But I hit the wall yesterday, six ways to Sunday. I still feel run over. What I need more than anything is sleep.
If I feel up for walking down to All Souls later, I can. But no pushing myself.
God knows the food I need. And that I’ll give it again, when I can.
A negative lymph node biopsy. I've dodged every other bullet, and I know it—but I may not get the results of the biopsy (done on Thursday), until I see the oncologist again, in ten days. It's Kaiser—they may or may not call me.
I know that being anxious doesn't help me; this whole thing is one long adrenaline rush, interrupted by general anesthesia. Clear CT and PET point to safety—but I won't really know, until I get the results of the biopsy (and find out what they want to do, if it's positive).
I do see my head/neck surgeon again on Thursday, and I'll ask him. I think I'll e-mail him on Monday, and ask when I can find out.
I know that I’m grabbing at a straw here. My own prayers aren’t usually like this. I don’t know that I’ve prayed for a specific medical outcome; I know that God will do whatever God does, and God very rarely breaks the laws of physics. Throughout this, my own prayers have been all of yours—I haven’t been able to pray for myself, in the usual sense.
I really just want. to. be. done. with. this. I don’t want more neck surgery, or radiation, or chemotherapy if I can avoid it.
Thank you, all.
Saturday, May 17, 2008
I moved this update from the previous post; I wanted to stop looking at that photograph.
I did take a bath, in my friend's tub. Took forever in there. Cool water felt good, and my body moves so slowly. I feel so different. Me--but different. Trying to wash carefully, turned into consciously taking care of my body, turned into realizing that this onslaught is nowhere near over. I have a two-week reprieve, then I start interferon. My body is where it has never been, and I have a long way to walk before I'm home.
When I get there, "home" will be different.
There's no way to neatly wrap that. Cancer changes you. Quickly. Deeply. I feel in some ways, more essentially myself. This is a wound, the healing of which will heal me. The soul-work I was doing in my previous life was all about courage, commitment, strength. I chose that path. In some ways, it made me more ready. But I never chose this.
You never know what will happen to you.
My ear is small, dark, bloody, and battered. You're also seeing the tape covering the sutures on my neck, and tape keeping my hair out of the way. The purple line is the surgeon's marker; I know this because previously, he'd written "Yes" under my ear, in the same color. (It's their own way of keeping track: "It's this side.")
My hair isn't dirty or wet. That's blood. I can't wash it; I need to keep the sutures dry.
I got up this morning, tired of the weight of the catdish. Both wary and curious, I gathered my sterile Q-tips and Bacitracin, and walked down the hall to the bathroom. I pulled the bloody gauze out of the protector, and threw it away. Then I looked at my ear in the mirror.
I could only stand it for a few seconds; I got queasy. (I still am, now, thinking about it.) I wobbled to the toilet, thinking I was going to throw up. Instead, I sat down, and fainted. I woke up draped against the back; luckily, there had been no way to fall. I have no idea how long I was in there, except it was shorter than a hall-mate’s shower.
I got up, wobbled back down the hall, and slept for another hour and a half. I’m still exhausted. I don’t want to do anything but sleep—and even then, I rest my head on a hand that’s still bruised from the IV. My neck hurts; my ear doesn’t. But it feels so very different.
It’s not that I’m repulsed by it; it’s… I don’t even know. There are too many feelings floating around in me right now.
As long as I didn’t have to see, I could protect myself—even as I was going through the experience. Now, I know what this is, and what it was. “Sobering” isn’t the word. I am clearly wounded, even as I know I dodged much worse. It's a wound that I don't have any choice but to absorb. It will heal, and be different. As will I.
Not going anywhere farther than my friend’s bathtub, today—and that’s barely a block. I’m going to hole up here, rest, and heal.
UPDATE: I got up to take care of it; I hadn't been able to, earlier. I'm so physically out of it still, that I couldn't open the seal of the ointment. Wobbled down the hall to ask a friend to help. She's at least as science-geeky as my surgeon; but a soil scientist, not an MD. She kept saying, over and over, "He did a really good job!"
I felt better, hearing that.
She ended up swabbing me for the first time; I didn't really want to see. It tickled, and burned a little, but wasn't that bad.
I started sort of crying as we talked--but I don't even feel emotionally involved in this. Nothing is landing yet. I can feel it all circling.
This is definitely a rest day.
UPDATE AGAIN: I took a higher-res photo, with the same camera phone. Took a Vicodin and, oddly, woke up a bit. I'm still not processing in words, without crying, and I still need only to sleep.
Friday, May 16, 2008
Just beginning to perk up, and am still very tired.
Today was good. My ear hurt all night and kept me awake, but I think my body learned how to make enough endorphins. I took a Vicodin after lunch (and slept for an hour), and another just now. I’m really not suffering. I itch like crazy under the cat dish; I can take it off and scratch (gently) tomorrow.
When I walked into chapel for the healing Eucharist, a friend took one look at me with my storm-trooper protection on, and called out, “Hail the conquering warrior!” The presider looked at me and laughed, in a totally affirming way. (He’s been through health crises. And I’m so relieved and joyful, I don’t inspire pity.)
Hugged my advisor at the peace, and thanked her for everything. She told me how good it was to see me, and that I’d been in their prayers. And she said to me, “Keep on healing.”
Oh, I am. Physically and emotionally. This whole journey has taught me so much. I asked it to teach me. And it has. I know that I’ve grown into and through this; I can feel it. When I’m not living in the middle of it, I can process more of that.
Talked with a friend after chapel, and arranged to borrow her bathtub if I need to. I have to figure out a way to bathe, and keep my neck and head dry. We have tiny showers, in the dorm. I’ll be able to wash my hair in a kitchen sink, with help. I don’t do that more than 2 or 3 times a week, anyway—so it’s not really worth tracking down a dry shampoo. I think I’ll only need to be so careful, until next Thursday.
I need to go thrift-store shopping; I need summer shirts that button. I have no desire to start pulling t-shirts on over my head. If I hold off on the Vicodin tomorrow, I can go—or I can see if anyone can come with me. Most of my friends have much more work to finish than I do, right now though. (Thank you, all of my faculty.)
My neck hurts when I twist it to the left, against the incision—so driving’s still really out. I think there are places within walking distance—and I ought to return an overdue CD to the downtown library, anyway.
I’m not supposed to bend, strain, or lift for two weeks. I may be able to postpone packing and moving until the first week of June. That would be a huge help. I need to talk to the housing director (or whatever his title is) tomorrow. He’s a friend, so I’m not worried.
It’s hot here, and one of the best things about today was the strawberry popsicle I had before lunch. Another, was the presence of a friend I rarely see, and wasn't expecting. He’d heard about me through the San Joaquin grapevine, and there I was with my cat dish on. He hugged me and we talked for awhile—yet more prayers and love.
I’ve been surrounded since the day I was diagnosed with this. I don’t know what I would have done, anywhere else. You do what you need to, and you cope—but this community has been phenomenal.
I took a nap (I’m under orders to rest), got up, checked in with a few other people. Talked with my advisor again, briefly, and told her about yesterday. We walked to the parking lot together, and I went back to Seven Thieves for a Haagen-Dazs bar (though I really wanted another popsicle; they were out). Had dinner shortly after, and now I’m back upstairs. If I know what’s good for me, I’ll go to bed early.
There we are: an easy, grace-filled, restful day. Pretty much what I needed. Tomorrow, I’ll figure out how to bathe, go clothes-shopping, and work on a paper. I may call another faculty, at home; when I called her from Kaiser yesterday, she offered the processing time. Sunday, if I’m up for it, I really want to go to the Episcopal Sanctuary in SF. It’s a homeless shelter, where my advisor’s parish does a weekly Eucharist. She takes groups of us, when she goes. I went once, in April, and loved it. That’s the kind of work I want to do.
I’ll try to tell yesterday’s story, tomorrow. I didn’t set out to write all this; it turned into a narrative, and I couldn’t just stop it in the middle. Perhaps a sign that the Vicodin kicked in, or that I’m more tired than I know.
Tomorrow, if I get to it: medical jail, really bad acupuncture, vampire bites, and safe, competent care.
Peace and love to all.
Still. Life. Yeah.
Drugged as I am, I can't sleep. It's okay; I'm just beginning to process everything. My ear hurts, even with the Vicodin, and I know I won't be out of the woods until the pathology report comes back, and I go on and then off the interferon, and my skin is clear for a couple of checks, and... the docs say never.
I don't believe them.
My camera is God knows where; I took this with my cell phone, just now. I look like hell--but I really don't. There is an ear under there. And in case you can't see, the green circles are smiley-face stickers. (It came that way, but I like them.)
I'm really happy that there's a healing Eucharist tomorrow. It has nothing to do with me; this is the last regular Friday of the month. The band goes straight across my forehead; oh well, Louis will figure out how to anoint me.
My community has been the very definition of awesome. I still feel everyone's prayers, like little invisible wings fluttering all around me. Sure, I just had surgery to remove cancer--but all of the results so far have been as good as they possibly could have. (Yes, I had it--but it had not spread.) I was by myself today, in what I jokingly called "medical jail"--but I was never alone.
Thank you all, so much.
Cat dish comes off Saturday, any time I want. Then I get to practice putting Bacitracin over steri-strips, with a Q-tip, without flinching. Sutures come out next Thursday, but I won't be sleeping on that side for awhile.
I'm not looking forward to seeing my ear for the first time--but part of me is also giggling at the idea of being half-Vulcan.
Yep. Still loopy. Or just damn happy that this part is over. Thankful to God, my doctors, my community, and my body.
Story forthcoming, tomorrow sometime.
Thursday, May 15, 2008
Wednesday, May 14, 2008
I don’t know whether I’m going to be admitted. I don’t know what the surgeon’s going to want to do, beyond the excision of (on?) my ear. (I don’t even know if he has jury duty tomorrow.) I don’t know what kind of lymph involvement I do or don’t have. I really, really, really don’t want a neck dissection.
How you can support me right now:
If I need stuff brought to me, I’ll call someone at school who can contact a prefect to unlock my room. Don’t marvel at the mess; grab the packed bag on my bed. (They discourage you from bringing anything more than your body to ambulatory surgery.)
I’ve promised specific people that I’ll keep them posted. I will. They in turn can update others, as they choose. Beyond that, I’ll face the world as I’m able. Please don’t take it personally, if you don’t hear from me for awhile. This has taken, and is taking, an enormous emotional toll. It’s going to take me some time to recover from just this phase. (I’ll be sick to an unknown degree, for an unspecified amount of time, beginning in two weeks.)
Please don’t call me, until the weekend. If you do, I’d prefer you use my cell. (You can call the hospital for information about me.) The battery lasts a few days. I’m asking for this, because I can turn it off when I need to. It’s okay to call; just give me time to be up for talking.
I’m going to be loopy and out of it for a couple days; general anesthetic will do that. I may not be able to say or write more than, “I’m home.” Take that to mean: I’m safe; I’m okay, and coping. I will ask for what I need.
If I’m capable of updating, I’ll do it here. I may, or may not, give a friend my login info. Don’t worry if you don’t see anything for a few days. Pray, and send me love and healing.
When I do get online again, as soon as I’m capable I have schoolwork to do. I haven’t had the focus to spare—but I need to. The semester ends next Friday. Updating, and e-mails, will happen, but they’ve got to come between other things.
I really, really appreciate all of you. I also need to be in my own self right now, so intensely that it surprises me. If you don’t hear from me, know that you will. I want your e-mails—but I probably won’t answer all of them. When I read them, my heart says thank you.
Prayers and love, yes. Advice or requests, no. I can’t do for other people right now—even playful suggestions hit me wrong. I think it’s because there’s so little that I know, and less that I’m in control of. A friend just preached in class on knowing what is and is not your “table.” (She used a wait-staff motif.) I’m focused completely on my own plate; not because I want to be, but because I need that space. I need to do this on my own terms.
Love to all.
Tell me, at 4 p.m. the day before surgery, that my doctor has been trying to get out of jury duty all day.
Apparently he was successful; I haven't heard anything since.
Shot nerves, going cheap.
If everything goes as planned, I'm due back there at 9:30 tomorrow morning. They're sending me to nuclear med for sentinel-node mapping, and will eventually slice me. If he doesn't dissect my neck, it'll be ambulatory, and I'll be home by evening.
I wish I knew now, how involved the surgery will be. A little time to prepare would be good.
Yeah, like I've been thinking about anything else...
Thank you, Susan!
I woke up to a really wonderful e-mail (thank you), and right now I don't have a headache. Going to breakfast, Magic Hands, chapel, and my pre-op appt. Anything I don't know before 2 p.m, I hope to find out then.
In between, I'm going to try to work on papers.
In a better frame of mind today. Must be the clothesline. :-)
Tuesday, May 13, 2008
The good news: I slept last night. Alleluia. I woke up without a headache, and it’s much less now than it had been.
I am so burned out on cancer. I’ve been doing this 24/7, every second I’m awake. I’m not just talking about blogging; but emailing, thinking, planning, feeling, telling people how I am when they ask. Some connections are right, and I still seek them: close friends; some teachers, people I’ve bonded with through this. I went to a party yesterday evening, and everyone knew why I was late. They knew why they hadn’t seen me in class. They were caring and concerned, and they did everything right—but it all gets to be too much.
I have things I need to take care of—but I know this hyperfocus isn’t mentally healthy.
Walking helps, of course—but even in that activity, I remember why I’m doing it. And it’s not simply because it feels good.
I’m having surgery in two days. I don’t know yet, how involved it will be: we’re hoping not very (she says, knowing they’re slicing her ear apart), but I won’t find out until tomorrow, probably. And I have schoolwork I need to get done.
How do you shake your brain out?
Monday, May 12, 2008
Or more at the end of my rope. I'm completely exhausted.
You know you're sick, when your instructor excuses your friend from class to go to an appointment with you.
Don't have results of PET yet; radiologist has to read them. Will post when I know anything.
Tired of talking, tired of tests, tired of coordinating rides for now and support when I'm sick, tired of having to deal with any of this. Tired to the bone, of not knowing.
I've had the same headache for two and a half weeks. It started out as surgical (remember the eye?), then all my anxiety built a house, moved in, and had children.
If they'd at least have a garage sale...
Sunday, May 11, 2008
My PET scan is tomorrow afternoon. It will show any lymph involvement that the CT didn't catch. I’m scared out of my wits.
I keep clinging to the fact that my CT was clean. But that was two weeks ago—and they wouldn’t do both tests, if they didn’t need to. I’m not at all afraid of the procedure. If you hate needles, don’t get cancer. (I have a blood condition which meant I got stuck a lot, when I was little. That makes it easier to be tough about it, now.) I’m terrified of what they might find.
Even though I know that this is totally survivable. Isn’t that odd? Cancer does strange things to your mind. I think a part of it is knowing that my body will be different, irrevocably, after Thursday. I’m determined not to hide it—but I may not be able to, even if I’d choose.
I keep saying I want to remember this, to learn from it, to give myself to being changed by it. The truth is, I will never be able to forget. All I can do is choose how to live, with this as a part of me.
Living with cancer is not my choice. I am, and do, and will—even after this becomes part of my medical history. I want to be brave. I know I got off lightly. But there is nothing easy about it.
After the immediate fear subsides, after the cancer is cut off of (and out of) me, after I’ve recovered from the preventative treatment, I’ll have to carry health insurance, forever—and it will be more expensive and harder to get. If I don’t have jobs with benefits, I’m screwed. And there are way too many, like me.
My passion is ministry with the most marginalized. I know the church cares. I also know that I’m going to have to write grants forever. There is no money in this. I will “need” financial security—but like the people I’m serving, I will not have it.
You want to make an advocacy soup? That’s how. I’m articulate enough to speak up, and I will need to. If I can hear it as a calling, I can be almost okay with it.
I’ve been a poor hippie by choice, much of my adulthood. Now? I didn’t choose to land on the wrong side of our health care system. I got a diagnosis that branded me high-risk. I’m still young, strong, otherwise healthy. I am still myself. This was not my choice, any more than mental illness is someone else’s. It happened.
How am I coping right now? Rocking out to the same song over and over, on my iPod as I type this. Shivering—partly out of fear, and partly because it’s cold in my room right now. I told a friend I’d take a hot shower and call her, over an hour ago. I’ve been fielding e-mails, listening to music, writing, thinking, and letting myself feel, since.
Schoolwork? Not tonight. I feel like I’m full of caffeine. I’m on an airplane, cleared for takeoff, and the gears just engaged beneath me. There is no backing out of this.
It’s not a rush I’d wish for anyone.
I, and my friends, can ask all the right questions. I can know exactly what the doctors are doing, and why. I can also demand a port, rather than 20 separate IV starts. I can advocate for myself within this system. But the only real control I have over my own apparent biology, is who I am.
I ask my friends for prayer, because that’s the only way I can pray. I know God isn’t a Band-Aid. Miracle healings happen, but they’re rare. I don’t rely on God to break the laws of nature. Therefore, I don’t know what I’d even ask for. Courage? That’s my soul’s work, anyway. Strength? Develops with experience. Patience? Quietly, never.
I can ask for the grace to live this well, and by my actions I probably already have. I know what I mean. But the words still sound like surrender.
A teacher just reminded me in an e-mail, to breathe. My community is holding me in prayer and love. That is how I know God is here.
Just woke from a dream in which God was human, present, mother, love.
I don’t think it had anything to do with my parents, in particular—it was neither about them, nor against them. My mother and I have similar eyes. This mother/God looked exactly like me (which is different from the way I look in reality). I was both child and adult; she was taller. She was dressed completely unpretentiously—not trying to “be” God, only present.
There was no human entanglement between us—but a tangible, mutual, love. Hers manifested the way my friends’ love has been, really; lots of hugs and concern, but not hovering. I was… loved and grateful. Completely, actively engaged. But I wasn’t clinging.
I asked her to tell me stories of when I was a sick infant—which she did, though images (inconsistent with the actual facts; hey, it was a dream). I was a baby on an operating table. There was never any sense of worry for my well-being. Only confidence that I was in good care with the doctors, and would be okay.
I never had to be good; just myself. She accepted me wherever I was. This dream was full of laughing, and hugs.
I fell asleep on the floor, in child’s pose. I woke, sort of, to the alarm, and was three degrees from sleep when I felt her behind me, poised to wake me. I sat up, and was surrounded by love.
Words aren’t doing it justice. I’ve been having all these fearful nightmares. This was the opposite. There was no fear in this; only love, and the confidence that I was not ever alone. I woke up wrapped in it.
Sure, I was awake from 2 a.m. to 5. I’m still exhausted. But the love that I’ve been walking in, is sinking through my skin.
Paul, I think our e-mail conversation last night helped a lot. (You will know why.)
Saturday, May 10, 2008
I’ve been thinking about elements: earth, air, fire, and water. And where I am, in the midst of them.
It started last Tuesday, with a friend’s sermon in class. She preached on the Pentecost; of being in the upper room, watching as the Spirit sets fire to your being. We’ve been working on metaphors; her strongest was the fallow field. There are times when you’re not directly engaged, but waiting; watching for God’s involvement in your life. Waiting, for that tongue of flame to find your head.
She’s right, absolutely. And it’s true that I haven’t been getting much done, in the external world. I still have that paper and a half to write, for instance. But as she spoke, I was thinking, “I’m not fallow. I’m a field on fire.”
Most of last week, I was an anxious, sleep-deprived mess. I was so wound up, that I kept winding tighter. Like a crazed caduceus, the only way I went was around and around the post. The post was, and is, the horror and fear of what’s growing on my body.
I wrote because I needed to—and didn’t stop, until it felt like a job. I talked, because I needed to. I fell apart in chapel, letting my friends and advisor hold and comfort me, unable really to pray. I lay down, but couldn’t stay asleep.
I needed to be, in that burning space. Just to know it, maybe; to feel it, to be human within it. To remember. I know that when I’m consumed with anxiety, I’m more difficult to be around. But I needed to be as intense as I was. I couldn’t dial myself down.
Through it, I knew that I was burning—so that something could be planted within me.
I was chatting with a friend over e-mail this morning, about grace, love, fear, and choosing to be publicly vulnerable. There was a time, until recently, when I would not have shared this the way that I am. I would have shut down, in fear of looking weak and fearful. It’s only because I’ve been loved enough, that I can share these stories, and ask for prayer and love. He told me of the grace he sees in me opening up.
I know that God is in this, though I’m not always sure where. I certainly am not asking to suffer. But I want to become as human as I can. I want to learn what this can teach me, as long as I’m open to the experience. I want the empathy, that I would not have touched before. I want to be as real as I can be.
One thread that’s woven through this, is the knowledge that I got off damn easy, for a cancer scare. I don’t know that it’s not in my lymph system at all—but I know that my CT was clean. We caught it early. Interferon is not what’s commonly thought of as chemotherapy. Your body makes it, naturally; it fights viruses, and cancer cells. I’ll feel like I have the flu from the devil himself, for at least a month and at most a year—but I’ll keep my hair. I won’t look sicker than anyone fighting a virus. I won’t wear the badge of the cancer patient. Looking at me, will not strike fear in others.
And as far as we know, I don’t have lymph involvement. Even if the PET shows some hot spots in my neck, the CT did not. My doctors will never use the word “cure” with me—but surgery can and will remove all clinical evidence of disease. I could be done with this, forever, at the end of this June, or next. It’s not presenting as a chronic, or particularly difficult, illness. It could come back—but with the interferon, there’s a 70% chance that it won’t. (I will, of course, be monitored for recurrence, for life or as long as I have health insurance. They never really let you let go.)
As soon as I got the diagnosis and posted it, both here and on the lists at school, I started hearing from survivors and those who love them. You’ve oozed out of the woodwork. You tell me how long you’ve been clean, and how joyfully you live. You pray for me; you love me. Knowing that which grounds me, you write of the “resurrection life.” I am humbled, and blessed.
That intensity; that jumpiness both focused and scattered, is the fire. When I got the diagnosis, I dropped into a deeper, more solid focus on life, blessing, physical and emotional survival. I’d lost touch with the gift of that, as I’d lost sleep.
I panicked. Nothing could calm me, until I asked for a prayer-bath, here. You flooded me. I went to sleep that night, bathed in a sense of calm that I hadn’t known since before the diagnosis—and may never have known truly, for itself.
Your prayers, and your hearts, gently carried me into flowing water. I was calm, and though I kept the 10 p.m.—3 a.m. sleep pattern, I woke up still assured of your love, and God’s. I had a sense of stillness within the fear, and I was able to be open to the next day as it came.
I dropped in on my advisor in the late afternoon, on my way out for a walk. I could tell I hadn’t surprised her; though I don’t have a rhythm of this, I’ve done it before. She was end-of-semester busy, but she paused in her work, and we chatted for about fifteen minutes. I told her I was still tired, but calm, and she thanked me again for the education. We talked about this whole process, and what it’s like to go through it both in my own body, and in community. She let me tell her what I’m thinking, feeling, learning. I told her about the burning field, and about knowing that something would be planted in me.
We hugged goodbye, and I went on to Black Oak Books. Another teacher had recommended a book for summer reading: The Artist’s Way, by Julia Cameron. (She knows how important the act of writing is to me, especially now.) I found it, used; and stopped at Elephant Pharmacy for some body-care stuff. (I didn’t get a yoga mat; I may go back for one.)
The whole time I was walking, I was thinking about fire and water. My energy had shifted so profoundly, just through prayer and love. I’ve been both in my body, afraid and trying to love it, and looking askance at it: “What on earth’s gotten into you?” (Literally.) Meanwhile, trying to love myself through this, and leaning on my friends a lot.
Seeing that deep shift, from a place of two perspectives, got me thinking about energy in general; and how I can use and change it. I have no idea how air might feel. I know I really need some earth-time. I have to get work done, and I want it done before surgery next Thursday. I can pack, with a sore ear, but I’d rather not have to write that way.
I’m imagining these frames of being, and wondering how I can move intentionally between them. It gives me a useful way to contextualize this experience—energy, emotions, body, focus.
Talking about myself like an academic subject feels very strange, but the framing works. If you’re thinking about astrology, I don’t know how it corresponds, and only sort of care. I had my chart done about ten years ago; I’m a mix of earth and fire, mostly. I know that earth energy is practical, grounding, and solid—and that’s where I need to try to place myself. Water is cool and calming; it’s prayer sliding over my skin. The image of the burning field, preparing for growth, is a blessing—but the fiery energy I feel right now is mostly destructive. Fire is the urgency that wakes me at night, and keeps me from rest. Some associate fire with anger, but right now anger in itself isn’t really in me—and I don’t want to conjure it up. I’m in a good, loving, trusting, open place with my body and my community—and I don’t need to look for complications.
Air, as I said, eludes me. But the inner pagan in me loves these ideas, and I’m going to play with and use them.
All of your insights are welcome.
Let me share the nightmare I woke from at 3:30 in the morning. For what it’s worth, I had NOT taken any sort of sleep aid:
I was leaving an abusive relationship. I had five kids, all under 12-ish; the youngest two were babies. I was trying to get them, and enough of our stuff, packed into the car—alone—before my husband got home. (He had been calling on his cell phone, threatening me, and I knew roughly when to expect him.) The older kids knew what was going on, but were off doing their own thing. I started out packing slowly, carefully; ended up just throwing things together in a breathless panic, and wondering how on earth I'd grab the toddlers in time.
High undercurrent of fear. The background music, if you will, was the funeral hymn that my Magic Hands professor (and advisor) had taught us: Hymnal 1982, #355. It’s Eastern Orthodox, and has an eerie, haunting ring to it.
[She says hi, Jane.]
I woke up right at the point where I was closing the last suitcase; the older kids knew I needed help, and we either would have made it, or not.
"Even at the grave we make our song" has become a bit of a mantra. Perhaps I need a new earworm.
And I definitely have more work to do.
Let me say, again, though, that while I am afraid, and I do often feel alone—my community has been fantastic. It’s just that deeply, I know that my body, God, and I need to figure this out. I need your hugs, your touch, your prayer, your e-mails. I need your love. You can, and do, comfort me. I forget the fear when I’m with friends. Alone, it’s stronger than I’d like.
Friday, May 09, 2008
It seems important to mark this time. You don’t know, unless you go through it, how deeply a threatening diagnosis changes you. I got that call, incomprehensible years ago.
Thank you all, again, for yesterday’s prayer-bath. I went to sleep calmly last night; and though I still woke up at three in the morning, I feel calm, loved, secure. If I think about the PET, I get scared. But I feel your prayers, as hands lifting me up.
Feel free to keep reminding me, as you think of it. I’ll put another call out, if I need to. (Thank you again, Jake, for picking that up.) Your response yesterday was profoundly healing.
I went to yoga yesterday morning with a classmate; she treated me. It was so good to be in my body in an affirming way, to feel strong. Afterward, I felt warm and powerful. Then I got to carry the icon of Julian, at Eucharist. She of the hard-fought faith, the assurance in the terrible time. The preacher was one of my faculty, who has been a particular soul-teacher to me. Her homily was all about affirming the process of wrestling with and for faith, of being honest with God.
Yes. The icon itself was less an icon, and more a wall-picture; it’s nearly half as tall as I am. I lifted it above my head, and it balanced well. (I felt very butch.) The liturgy opened with the sprinkling rite, and we processed in to the Easter troparion:
Christ has risen from the dead,
Trampling down death by death,
And on those in the tombs bestowing life
I was walking, because I couldn’t stomp and carry the icon. But I heard and felt feet, trampling death all around me—in love and joy, and because it’s just fun. It felt so affirming, so right. God is always with us, I know; and I knew that God was in me and with me.
Later in the day, I left to go on a walk. I really wanted the prayer-time. I didn’t get it, though, in quite the way I planned. I saw a classmate in the parking lot, and we got talking. We went for a walk, and talked some more. We split a beer at LaVal’s (pizza place down the block), and finally went home. I hadn’t known that she was a breast cancer survivor, of 15 years. She met me in that fearful place, and she let me talk it out. And we talked about what seminarians talk about, in May as one is graduating. (I, thank God because I need the health insurance, am not yet.) It was a really good connection, and a reconciliation as well.
I sat with a group of friends at dinner. We talked about whatever; not the topic of me, particularly—which was refreshing. One of them, who is also a survivor of some scary health conditions, and I scraped our plates together. We were chatting about yoga, and “getting back to normal.” She left—and then she came back, and hugged me. “Love, love, love, lots of love.” She went away again.
It was exactly what I needed. I see you, I’ve been where you are, I love you, you’ll be okay.
In between all of this, your prayers came in all day. I need to write two reflection papers—but in the evening, I just let myself take it in, be loved, let myself be. Thank you.
Today: doing some homework, going to chapel, taking a walk, seeing what the day brings. A friend is taking me out tonight. Thank you all, for your time and your love.