Saturday, May 31, 2008

I said I would tell the story

…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.


susan s. said...

I just realized how little we've seen of each other in 'real' life! I have been reading about you since before nola and feel very close to you. That's why I preach, I guess. To me you are one of my kids! I forget what an old soul you are.

I was glad to be able to help when you needed it, and I'm not going anywhere, so if you need it again, let me know. You're on my list, girl. But as you say, you are surrounded by a host of pray-ers and prayers.

Kirstin said...

I'm happy to adopt you! I'll take all the family I can get, LOL.

I'm heading to Stockton in the next few days. What's your early next week like?

susan s. said...

Why, what do you have in mind?

Kirstin said...

I don't know. Just connecting.

susan s. said...

Ahh. I thought you might want Sushi! In the daytime? Tuesday?

Kirstin said...

Yes! I'd love that. :-)

"Ms. Cornelius" said...

God bless!

Episcopollyanna said...


It's good to tell the story, I think.

You're in my prayers. xx

Cathy said...

Thank you for sharing you story. Prayers being said for you.