I don’t go to the infusion center this week. Guess why? My liver is five times toxic. (Just barely, by one test; the other numbers weren’t quite so high). So now I’m in the process of figuring out what I can take for lethargy and queasiness, while my liver comes back to itself. My doctor’s supposedly calling back, this afternoon.
And I'm soon to take yet another nap.
"Five Times Toxic" sounds like a really bad garage band. Hmmm.
...and my oncologist here never did call me. I finally e-mailed her, along with my regular GP in Oakland (whom I really like a lot). I'll keep everybody posted.
Monday, June 30, 2008
I don’t go to the infusion center this week. Guess why? My liver is five times toxic. (Just barely, by one test; the other numbers weren’t quite so high). So now I’m in the process of figuring out what I can take for lethargy and queasiness, while my liver comes back to itself. My doctor’s supposedly calling back, this afternoon.
Saturday, June 28, 2008
Thank you all for hanging in with me. There's essentially no news--although yes, Margaret, I have prayer shawls now. :-) They're beautiful, too.
I have no energy, and I'm queasy all the time. We're wondering if Compazine is really working at all for me. I could take an Ativan and feel better--and sleep until night time.
None the worse and none the better; just... here. Thank you all for praying.
Saturday, June 21, 2008
It’s Saturday. I’m off of treatment on the weekends. And I still feel just awful.
Part of that might be, because it’s hotter than Hades outside. We ran errands this morning: Trader Joe’s; a big-box bookstore (I got an origami book and Crazy Sexy Cancer Tips; yes, I recommend it), a car wash. We were both dragging. I had said I’d vacuum; we both took naps when we got home, instead. And every time I got up, I felt like a cement mixer.
I did manage to vacuum one room, after I took a Compazine. And then I lay back down again.
I thought I’d feel human on my days off. I don’t have a fever, and I’m not sleeping all day. But there is absolutely nothing fun about this. I got all weepy this morning, for no reason I could put my finger on. I just needed to cry. Thinking about it, I want to again.
I want off the cancer bus. I feel like I’d be healthy without the interferon. But I don’t know that’s true—and it’s way too big a risk to even consider. So then: one week down, 51 to go.
Nausea: yes. Weepiness: yes. Bathroom irregularities: yes (as in, either explosions or nothing). Fatigue: yes. On my infusion days, I’m bored stiff in the chair for two and a half hours, and come home and sleep all afternoon. I don’t feel depressed, so much as frustrated, tired, and sad.
Protect your skin, all of you. I never meant to go here.
Wednesday, June 18, 2008
A prayer shawl. I know that sounds odd; it’s high summer. But it gets really cold in the infusion room, when they pump cold fluid into you for 2 ½ hours. They give you a lap blanket, and a pillow, but nothing for your shoulders (although they probably would if I asked.)
I could make my own, as part of Carol’s charge to pray for myself. I have my stash, in the back of the car. But part of the whole prayer-shawl culture is to make them for others. I thought I’d ask the universe, and see what happens.
Thanks! I got the idea, when friends of a friend made one for her. It hadn’t occurred to me before then.
Oh, and a nausea/misery update: Ativan is my friend. I still get the fever, chills, and aches—but the queasiness is almost gone. Yay!
Monday, June 16, 2008
Urp. Moan. Ugh.
But the worst of the side effects only seem to have lasted four hours. They hit, hard, within half an hour of getting home. I'm only a little bit queasy now, and the chills have subsided. We knew I was going to be better, when I asked for a popsicle. I’m in bed now, with an icepack on the back of my neck. A’s out getting me chicken soup and Ativan.
I feel sort of human again. Nowhere near the hideousness I was, even half an hour ago. Fever, chills, aches, and nausea seem to be my lottery results. But they don’t last as long as they were rumored to.
I may not respond in the comments much—I don’t have a lot of energy, and right now I should be sleeping. But I really appreciate knowing that people are watching out for me. Thank you.
One down, 18 or 19 to go (depending on what we do about July 4). My doctor said that the self-injections will be half of what I'm getting right now.
Love to everyone. And we both really appreciate your sympathy and prayers over Monte, also.
Sunday, June 15, 2008
I don’t feel like writing. I’m tired right now. But I need to give some sort of an update.
I’ve been busy the past few days, helping my best friend’s oldest cat through his dying process. He died this evening. She was napping on the couch, and I’d just finished dinner; I’d come back into her bedroom to hang out with him. He’d gotten out of his nest (in her laundry basket) and was lying on the floor. I knew, as soon as I saw him. I felt for breathing, though I didn’t need to. His fur was already cool.
I woke A. up, and we sat with him awhile. We read the applicable parts of the burial service for him. And we sent his body to its next place.
I’ve been part of her life, and his, for the past three years. I was there, two years or so ago, when this cat found God. He’d been absolutely unpettable, by anybody but her (and that, on his own terms). A switch flipped, and he was all about affection. All he wanted was for either of us to hold him. He stayed that way, for the rest of his life.
We don’t know how old he was, but he was old; he’d been on thyroid meds since I can’t really remember. He came to her as a stray, and a terror to the neighborhood. She tamed him. He was an absolute sweetheart for the last two years of his life. And, an absolute brat.
I know he’s being impossible to God right now. And I’ll miss him.
A. came with me to my consultation yesterday with an oncology nurse here. The first thing the nurse said was, “I don’t know much about interferon.” A. and I looked at each other, and our eyes nearly rolled out of both our heads. She redeemed herself quickly, though. She had a great sense of humor, and she listened. What she knew (germ prevention, and normal chemo guidelines), she knew well. And she had lots of alternatives for chasing (and catching) my unsociable veins.
I can’t have most raw foods for the next year, apparently. I’ll be more susceptible to salmonella. I can have peeled fruits and veggies. No raw leaves; you can’t peel them. We went out for sushi last night; it was the last cherry blossom roll I can have for awhile.
We’d both been cranky and edgy, from worrying about me and from watching her cat die. We went out for ice cream afterward; both feeling better. We know more of what I’ll be dealing with. There are workarounds, for some of it.
I shouldn’t be really sick right away; it takes about a week for interferon to build up in your system, even at these doses. I’m supposed to drink six bottles’ worth of water a day. I can do that. I can do everything I feel good enough to do; mild to moderate exercise should be possible, and is good for me. Apparently the last side effect to leave is fatigue. That makes sense, considering I’ll have just assaulted my body for a year. The tiredness can hang on for another six months. Not what I need, when looking for (and doing) real-world work. But there we are. I really don’t know what I’ll experience, until it happens.
I’m already craving old sci-fi movies.
I drove to Livermore this morning, because I felt like driving (yeah, I know) and because I really wanted to go to St. Bart’s. A. had taken me there last November, and I’d loved it—and never made it back. I was so glad I went, and I felt so much better on the way home.
The community is wonderful—it’s like a small, laid-back St. Aidan’s. Everyone was so warm to me. Carol (rector) remembered me from before. We hugged, and she asked how I was. I told her, “The short answer is, fine. The real answer is, it’s been a rocky spring.”
She asked about school. I told her school was great, and briefly about the diagnosis. She gave me a sympathetic look, and went on with getting the morning going.
They do a hymn-sing before services. People call out what they want, and we sing them. The third hymn became the opening. Someone called out a number; it turned out to be “Stand Up, Stand Up for Jesus.” I was trying not to crack up; I hadn’t sung that since I was probably 20, with a bunch of fundie friends in college. I hadn’t even heard it, since. It’s militaristic and trippy and struck me as hilarious—until one line caught me:
“Let courage rise with danger, and strength to strength oppose.”
I wasn’t thinking about Christian soldiers. I was singing for survival.
I told someone sitting directly behind me, that she had a good voice to sing next to. She told me later that she felt I’d been there for “eight thousand years.” The community is incredibly warm—not pushy, just open. I love them. People I’d never met hugged me at the Peace, and asked if I lived there. “No, actually; I’m a student at CDSP in Berkeley but I’m based in Stockton for the summer… and I’m starting chemotherapy tomorrow.” It didn’t freak them out. They said they’d pray for me, and I knew they meant it.
The liturgy was much like what I’m used to: pieces from New Zealand, Common Worship, other sources around the (God help us) Communion. Carol asked me, like she had in November, if I’d carry a chalice. I leapt at it. The whole experience felt like home.
She told me to hang around, afterward; she wanted to hear more about what was up with me. So I chatted with people who were totally friendly, whom I didn’t even know, until she’d finished greeting everyone. She took me outside, to a bench under a big tree, and we talked.
I showed her my ear, and my scar, and told her what was next for me. She asked how I was praying. I told her I really wasn’t; my community prayed for me.
“Because all I’d pray for is—“
“So why don’t you?”
I told her why I didn’t: because lots of people pray for that, and don’t get it. She said she didn’t really agree. And she told me something that I would not have been ready to hear, before now:
“God will either heal you, or change your heart so you don’t need it anymore.”
She was the right person, at the right time. I could take that in. And I thought, in the car on the way home, “That’s at least as good as the odds I have now.”
It is. Better, really. And I think that what she said is true. I need to be open to God in this. I still need to be held in others’ prayers—but it’s time now that I join them. I think I can. I’m awake enough; I’m strong enough; I’m still healthy, and I’m here.
I start the meds tomorrow. I don’t know how they’ll affect me. I know I’ll feel something, and I want to. You can’t mess with my T cells without me knowing. I’ll know it’s working if I’m feeling ill, if that makes sense. But I need and want to live my life.
I have a friend who graduated from CDSP two years ago. He’s been living with HIV/AIDS for half his life. I saw him at this year’s graduation, and we talked briefly. He really got how scared I was, and am.
Someone with that diagnosis knows if, but not when. I don’t know either. I have no idea whether I’m clean, or whether something is growing inside me. I’m at the point now where my head realizes: the only sane choice is to say, “Fuck it, I’ll live.”
My heart isn’t there yet. But it will be.
Pray with me: for manageable side effects, and for healing.
“Let courage rise with danger, and strength to strength oppose.”
Friday, June 13, 2008
Three classes done—actually, two forgiven—and another to finish by the first of August (unless I need another extension).
And a video to do when I get back—but I'm not even thinking about that, yet.
My teachers gave me so much grace. I'm thankful.
I ended up not going to Alameda tonight, and I'm okay with that—if only because I have to drive to Oakland next week for a head/neck surgery follow-up. Gas is expensive; money is an issue.
"You've entered a vibrant playground for kind warriors who believe it's HIP to get healthy, SEXY to be spiritual, and NOBLE to protect hot mama Earth."
Caminante suggested, when I was first diagnosed, that I check out the community at My Crazy Sexy Life. I finally went there, last night. I found their page through a Facebook group where a friend had posted, and it felt like time.
It was. I’m ready. I didn’t, and still don’t, want a support group full of people who are as scared and rattled and new at this as I am. I’ve been in too deep of a funk, for way too long. I needed to be bounced out of it.
I don't know that they did, but they'll be helpful when I'm struggling. There’s an “electronic altar” on the sidebar, where you can post prayers for yourself or anyone. I did that, and I read some of the threads. They are so positive. I went looking for groups, just to see if I’d match anywhere. I found a Bay Area group, and a melanoma group, and one called “Crazy Sexy… what the hell are we doing?” It’s all about how to eat really healthy, I think, and have fun while you’re doing it.
The friend I’d followed from Facebook is already there. Other people answered my prayer posting, almost immediately, assuring me that I would find joy again. Another melanoma survivor friended me; I don’t know him, but it felt warm, not creepy. He said something like, “Hey, I’ve been there, you can do this.” What my real-life survivor friends have been telling me for weeks—but he and I have the same diagnosis.
It isn’t what I was afraid that a cancer survivors’ community would be. The group is incredibly positive, loving, and resourceful. There’s also a group for friends of survivors.
Most of my traffic are friends of mine, who aren’t in health crises themselves. If you are, and you’ve never been this scared in your whole entire life, check them out.
Wednesday, June 11, 2008
Yay. Infusion just called me back. I’m to go in on Saturday at 2, for a consultation. I’ll know more about this whole process then, than I know now.
I show up on Monday at 9:30, for what’s scheduled as a three-hour appointment. They’ll hydrate me via IV for two hours, and give me the meds for 20 minutes. So each appointment really lasts 2 ½.
I asked if I’d have trouble driving home (in case I need to); she didn’t know. There’s a set list of side effects, but reactions are individual.
My appointments the rest of next week all start at either 9:30 or 10; I didn’t write down which was when. We didn’t schedule further than that; they want to see how I do.
I don’t want to get morbid about it—but knowing that I have five more days of “normal,” before my body feels radically different for a year, feels very odd. I don’t even want to do anything extraordinarily physical; I haven’t had any emotional energy for weeks. (If I lay still even now, I could sleep.) I have some reading and writing that I have to do. I still want to go to Alameda on Friday—and if I have some time when my papers are done, I might leave a bit early and spend some time in Berkeley. Might take a walk later today, when it cools off, just to feel my muscles move.
I don’t feel like cramming a lot of activity in, though. I’ve been staring at this for so long, I just want to get started.
When I was newer in this neighborhood, and had first heard of the trial I thought I’d be taking, I was fine with the idea of the harsher segment—so I would get sickness and health really wired into my body, and so I would never forget the gifts that the diagnosis gave me. I miss that innocence now. The harsher wing, of that false understanding, was the standard treatment; and it’s what I ended up choosing. It has nothing to do with remembering to be thankful for life—and everything to do with loving this life (on a level deeper than emotional) and wanting dearly to preserve it. I’ve been rewired in ways I’d give back if I could; I breathe fear now, and am never without it. What will it take, to reconnect me with joy?
You’ll say time, and you’re right. And I know that I may have cancer inside me; I equally well may not—and if I do, it’s certainly not immediately fatal. I just never, ever, ever want to be back here.
It’s the uncertainty that gets you. Every damned time. That’s why I’ve been so stressed, when these health professionals’ answers change. I have enough unknowns in my own body. I need my doctors to give me consistent information.
It really can’t be that hard. Can it?
Grrr. Grrr. Grrr.
I called Kaiser about an hour ago. I’m due to start interferon on Monday; my friend was about to leave on a business trip, and we wanted to make sure she could adjust her schedule when she gets back, to go to my first appointment with me.
As I understand it, that appointment involves both an oncology nurse, and the first infusion. But what do I know, now.
Oncology transferred me to Infusion. That was fine; I should have called the number on the card I forgot I had. Infusion put me on hold forever, to find out what the order was. But the pharmacy had the damned order wrong. She came back, unsure why I was calling to make an appointment to inject my own self at home.
Okay. No. Four weeks of IV, 5 days/week. Then 3x/week self-injections (my Oakland doc confirmed the last piece). She said it was written really confusing.
I’m spitting nails.
They’re supposedly calling me back, this afternoon. Why we couldn’t have made this appointment on our way out of the consultation, two days ago, is beyond me. I’m just glad I called, instead of doing as I was told and waiting for them.
And I’m as frustrated as I’ve ever been in my life. The sooner this starts, the sooner the worst is over. Just start me and let’s get it over with.
Tuesday, June 10, 2008
Out of pure curiosity, I asked the Ranch how summer was shaping up. One of my best summers ever was last year, up there. I got a note back, asking me to do first aid during BREAD camp again.
It’s the third and fourth weeks of July. I’ll be fresh off the IV, and starting self-injections. I don’t know if I’m up for this. But I really want to do it. The kids are creative, crazy, and fun; the staff are deeply good people, and the place is beautiful.
I told them I can’t commit yet. But if I’m able, at all, I will.
Here’s the problem: I’m eating a lot, and sleeping a lot (and tired, when I’m awake), and it’s almost 2 and I haven’t taken a shower yet. I don’t feel depressed—and trust me, I know that road. I’m just out of sorts. Consistently. I can feel my body racing, even when I’m sitting still.
I just found my Rescue Remedy, and I’m taking some (in a glass of water) right now. I don’t even remember clearly why I bought it; I think I was up in Olympia, two springs ago, grieving and stressed for more transient reasons. I packed it here because I thought it might help with symptoms; I’m glad to have it, now.
In Berkeley, I’d take walks. Around Holy Hill, or down to Elephant… there are hills, and temperate weather, and places to walk to. Here, it’s unremittingly flat, and hot, and there’s no place really to go. I’m in the middle of a giant suburban subdivision.
Driving with loud music is completely impractical, obviously—though I am going to Alameda on Friday. And I’m not one who therapy-cleans.
Therapy itself? She’s in Berkeley. Gas is expensive.
I have my bicycle here, and can ride it, for the next week while I’m well. I think my tire pump is still under one of the car seats. But cars in this town don’t know what to do with a bike. Last time I rode anywhere, I almost got run over—twice.
I have an exercise mat that a friend gave me. I forgot to look for my yoga-posture cheat sheet, when I packed out of the dorm. I remember a few.
I might be able to find a class, once or twice—but money will be an issue.
Yard work? Love it. But there’s not that much to do right now. Later in the summer, there will be.
Going outside and standing barefoot on the ground, would be something.
I need exercise, and deep breathing, and reconnecting with my body again. So. What do you do, to heal yourself? Visualizations, breathing techniques, yoga postures (describe them please), any of your favorite tricks and tools. Thanks!
Monday, June 09, 2008
Argh. I met the oncologist in Stockton today. She’s Burmese, and there’s something of a language barrier—which grew quickly into a patience barrier, seemingly for both of us.
My friend was there to take notes, and to record. Dr. O.Y. objected to the recording; she said that Kaiser didn’t allow it. I would think that they’d support people getting (and retaining) good information, but oh well. We didn’t argue.
She brought up the path reports online, and let me look at them—but I didn’t have a chance to really read, or ask questions. I’d never seen the actual documents. I want copies (and e-mailed my regular oncologist, to ask if I could have them).
She asked me the same questions several times, about the lump I no longer have (changes, bleeding, growth rate). I gave her the same answers. Then I had to tell her three times why I’m not doing the clinical trial. She wasn’t arguing with me—she didn’t seem to understand. She interrupted, answering a concern she’d apparently assumed I had. Repeatedly.
It was frustrating. If I were going to be out here long-term, I’d switch doctors. Her web page says that her primary language is English. It clearly isn’t. She wasn’t all that warm, either. She wasn’t trying to be cold; just official. I’m guessing there’s some cultural miscommunicating, too. My oncologist in Oakland really listened to me. He took time. (I put him in the past tense, because he’s retiring right when I move back.)
I had to sign a consent form, for treatment. The oncology nurse came in to witness. Her demeanor was much more comforting; I liked her. But the form said that I’d had all my questions answered. That wasn’t remotely true; I’ll have an appointment later in the week (or Monday) with the oncology nurse, specifically to go over the details. Why I signed this now, rather than later, is beyond me.
I have to wait for the nurse to call me, to set up that appointment. It looks like I’m starting treatments next Monday. Good, I say—get me as adjusted as possible, before I go back to school. I’ll be past the horrible first month, then, and into the self-injections.
I had understood that those self-injections were to be once weekly. Dr. O.Y. insisted it was three times. She got a book and showed me. So now I have to prepare to be sicker than I’d thought I’d be. Grrr.
If I could have the same set of answers from one event to the next… I’m really tired of things changing up on me.
Dr. O.Y. sent me to get a baseline blood test. She’ll want one every month; I’m to see her once a month as well, I believe. Fortunately, the test only took one stick.
We went out for ice cream on the way home.
I’m so spent and tired—and I’m not even on interferon yet. This whole process takes so much out of me.
I mean really—how weird is it, to miss the care team in Oakland who escorted me down the damn rabbit hole to begin with? But I know them; they know me, and I’m tired already of introducing myself and my history to new people. Just treat me and let’s get it over with.
Keep praying, please: for emotional wellness, as much as for physical. My blood pressure’s rising, also; it was 138 over something. The higher number is never above 110. I don’t know if my body is freaking out or trying to tell me something—and I don’t know how to calm it down again.
I feel subtly out of control, like that. And even with clean tests, the possibility of cancer cells inside me makes me feel intrinsically dirty. Hazardous. Potentially polluted. I want to trust my body, support it, hallow it—and I don’t know how to reclaim the relationship I had, when I was first learning to listen. I am so afraid right now.
You are still my prayer circle. Thank you.
I have another oncology appointment, this afternoon. I really, really wish I didn’t.
My friend’s coming with me, to take notes and to ask questions of her own. I need to charge the batteries in my voice recorder, before she gets here. I think everything is packed in the same box…
I’ve already heard all the statistics. I don’t need or want to go there again. I’d really rather keep this to discussing treatments: tell me the side effects; how will I know if one or another catastrophe happens; what do we do if it does, that sort of thing. Oakland oncologist and I already discussed what we’re doing. Give me one more week and let’s just start, please.
I need the week because I have two papers yet to finish, both due Friday. I also really want to go to friends’ ordinations in Alameda that night. It’s still so completely weird, to be healthy and strong and have to plan for when you’ll be incapable of motion.
I’m fairly incapable of motion in some ways, now. I keep saying that cancer has taught me some things I want to keep—but the fear that never really goes away, even after clean tests, is a steep price. It’s become a part of who I am. It takes me forever to do tasks I have to do, because I’m still staring cancer in the face. I can look away, briefly. But it never really leaves.
I wish I could just go back to being normal. But I can’t. And this, even with the most positive prognosis there could be. It’s the unknowing that gets you. It’s like walking on a high wire, everywhere I go.
Someday I’ll get used to it. Someday I might find myself back on the ground again. But for now, I’m up here, and the wind is still gusting.
Sunday, June 08, 2008
I just came in from church. I went by myself; my friend went to her own, and I chose to go elsewhere in town. I like the community, and the priest; a woman.
I sat near the back. A friend of my friend came and hugged me. Another sat with me. We hadn’t seen each other in over a year. She asked how I was, already knowing the basic story. We caught up, and I kept catching her smiling at me. The connection was warm, friendly, comfortable.
The priest knew me right away, which surprised me because we’d only met once, at the end of March. I don’t know a lot of people, but the community seems welcoming and warm. I may not be up for commutes (of ten miles, or eighty); this feels like a good place to encamp for the summer.
I snuck out during coffee hour, though. Here’s why:
I sat with my friend’s friend, W. She introduced me to C, sitting across from her. W mentioned someone else she knew who had cancer. We talked about that, and about how I was doing. I’m used to telling the story; I was fine.
C picked up on the cancer theme, but didn’t realize that W and I had been talking about me. She started in about how rates for this and that and the other kind of cancer were rising. She mentioned skin. My breath shortened, and my throat started to close. I said, “I can’t deal with this conversation anymore.”
W told C that I was dealing with cancer also. C got it, and apologized. All was well.
Then both of them told me how to deal with it! C said something about a positive attitude. W said that as a Christian, she would give it over to God.
I know she meant well. She gave me what wisdom she had. Thing was, I wasn’t asking for it. I really just wanted to talk about anything else.
I got up, saying I needed tea. They only had black tea, which I don't like (next time, I'll bring my own). But once freed from the conversation, I didn't want to go back to it. I snuck out the side door, instead.
I miss my community so much I can taste it. My teachers, and the friends whose company I sought, became ministers of presence. Some of my friends were just as baffled as I; they hadn’t had a friend go through this before. But they did the right thing: they listened, and they offered prayer. Those who had survived health crises of their own, helped me process. They helped me figure out what I needed and what I didn’t; and how to ask for the words that would help me. My teachers told me only to take care of myself: sleep when I needed to; take walks; breathe; focus on God’s love. They told me they understood my fear, and my edginess—they never told me what to do with them. (When I asked for coping tips, I was given them. Not before.)
I know that I was the resident pastoral-care lab rat, and that denizens of a seminary are a special breed. I’m not going to find that level of awareness everywhere I look, just because I’m accustomed to it. But maybe I can increase it, here.
If you have friends who are going through harrowing times, ask them what they need and want. One size doesn’t fit all. But here’s how to help me:
If you have time for a real answer, it’s okay to ask how I am. If not, skip the question. Tell me you love me; tell me you’re praying for me. Do NOT give me unsolicited advice.
Why not? First, because it irritates me, and stresses me all over again. “Give this fear to God.” Right, like that’s easy. And I’m not going to do the work to get there, if I don’t think it’s mine. I need to experience this; be transformed by it, learn from it. I still can barely pray for myself; my community bears God for me. I can’t conceive of trusting an entity separate from that love. And this fear keeps me processing; keeps me working, keeps me learning. Right now, it isn’t something I completely want to lose.
When you tell me to give my anxiety to God, you’re skipping to the back of a book I’m in the middle of. I need to do the work that’s in front of me. That kind of trust, if it comes, will come later.
[I know that I blog about cancer all the time. In real life, I think about it, but it’s not an unhealthy obsession. I sleep through the night now, and I’m calmer than I’ve been.]
Also: If you haven’t walked this road yourself, your words are hollow. You have no authority in this neighborhood, if you haven’t lived here. If you’ve been here, I want to hear you. If you haven’t, don’t try to talk. Just listen.
How to support me, in a nutshell:
• If you’re worried about me, tell me. Otherwise, accept me where I am.
• Tell me you love me; tell me you’re praying for me. Most other words are useless.
• Don’t minimize my need to protect myself from the sun. I’m not being paranoid if I wear a hat. I’m taking care of myself. My doctors have told me to do this.
• If you’re thinking of me, tell me. You don’t have to say anything more than, “Hi.”
• Don’t talk to me about your other friend with cancer. You may need a pastoral presence. Around this issue, I can’t be that, yet. Give me a year, or two, or five.
Thursday, June 05, 2008
I mentioned yesterday that I’d had lunch with a friend. She taught my Monday morning class, of which I’d missed the last month. (I’d left in the middle of it when I’d had three calls from Kaiser in the space of an hour; and either had appointments or was recuperating, the rest of the term. Once I missed because I dearly needed chapel.)
It was a GTU class, taught at PSR. I’d cleaved to my core community, and to the faculty who knew me well. I’d let everything go, that I could. She knew where I was, and I knew it was okay that I was tending to myself. But I hadn’t kept up that relationship.
A couple of days ago, she tagged me on Facebook. She wrote on my wall, asking how I was. It was a brief, and loving, note. I answered with a paragraph about where I had been, was, and would be. I felt… safe. Her note came out of nowhere, and it freed me of the shades of guilt I’d felt for not staying in touch.
It was a kind, gracious, channel-opening exchange. I was grateful; I was also busy, and I didn’t think much more about it. Then yesterday, she asked me to lunch. I was packed (took me days) and not in a huge rush to leave, so I accepted. I’d always liked her, though I’d missed so much school that I hadn’t known her well. I said yes to connecting, before I left for the Valley and she goes overseas.
She greeted me with a big hug, and, “The Lord be with you!” We spoke the Eucharistic dialogue. The conversation that followed was a sacramental whirlwind. Her wallet was lost, so she fed us both on the $10 in her pocket. And told me the story of the Holy Child of Atocha, who had given bread to starving people in prison. Hence: this child had made off with her wallet, to do good where it was most needed.
I would have panicked about my missing wallet, and cursed my own idiocy in losing it. I don’t see grace in that sort of thing. She showed me: it’s perspective. Grace is in the eyes through which you choose to see.
I showed her my ear, and my scar. She touched them; lightly, gently. All she said was, “Beautiful.” It was a spiritual healing, as much as a reminder to live. To take these scars as gifts, and to walk into the world with the empathy and courage I know they’ve given me. To be the healer, and human, that I’m called (and gifted) to be.
It really was a conversation with the communion of saints; and not only because she invoked them. They were imagined, and they were with us. It was astonishingly easy to meet her in that place.
So there we were, talking about lost wallets and miracle children, mothers and godmothers and grace and the Great Time; creating, apparently, a Celtic “thin place” in a Mexican restaurant on Euclid. We talked about everything, with the exception of class. That never came up, even once.
This morning, I got an e-mail from her saying that I’d passed my oral exam, and she was releasing me from the conditions of my incomplete. Not only that, but she gave me an A for the semester.
It wasn’t an exam; it was a lunch date. One that I’m glad I said yes to—and maybe that’s one of the lessons, to say yes to random gifts (and to keep working on not being afraid of people). But I never expected this; it didn’t cross my mind. And now I have two less papers to write. Alleluia.
The work I had done was good; the grade she gave me was in line with that. So there is an element of academic work here, along with the soul work I’ve been giving myself wholeheartedly to for six weeks—which is really where I’ve needed to be. I take it also as a sign of the universe telling me, "You've done well."
She showed me something I’m still sitting with: celebration as a grateful response. Seeing with blessed eyes, the profusion of gifts that is this life. Walking in gentleness, generosity, and joy. Loving without expectation—and without limit of space and time.
Wednesday, June 04, 2008
Dirty, exhausted... and here. Trying to work up the motivation to dig for clean clothes and take a shower.
Had a really good day today. Ate lunch with a friend; she taught one of my classes, but I missed so much of it, that I think of her as a friend rather than teacher. She moves in the world in a thoroughly sacramental way. I want to open my own eyes, more.
If you live, open to the gifts, they will come.
From the comments:
Greetings on this rainy muggy east coast day. Way back in the 50's President Eisenhower had a heart attack. I suppose he got tired of the question of "How are You?" too. He has a shirt made, that said "I'm fine, thank you.".
Now I think you should have a tee shirt made, just for the summer and wear while not in school, but have a blog-sphere contest as to what should be on the front. I'm sure you will get great responses.
For instance "Don't look at me, Don't talk to me, and Don't ask me how I am." Or some such nonsense like that.
Continuing to pray for you,
“Don’t look at me” isn’t the attitude I want to project. Love and prayers have sustained me. I write here about the cancer adventure all the time—but in real life, sometimes I need to be with that and sometimes I need to be normal. I’m negotiating it within myself, let alone with the community around me.
It’s the question, not the concern behind it, that leaves me flustered.
What say you? Have fun with it. Winner gets… something.
…but not yet out. I’m headed to the Valley in the morning. Didn’t quite get enough done today, and we know that my energy hasn’t been what it normally is, for awhile. (I’m physically okay. Emotionally sapped.)
I think I’m relaxing. Either that, or just getting used to being scared. I’m not quite so wound up, right now. I’m physically tired in normal ways—my back hurts from moving boxes. It almost feels good. There’s a clear reason for the pain. No mystery, there.
I know, lift with your legs. I did the best I could. Don’t pack books into 14” cubes.
I also am very ready for the next thing. I don’t really want to move in crisis mode so much; nor gritted-teeth survival. I’m healthy, now. I need to let myself experience that. If I have this beast, or if I don’t, I’m ready to battle it. Like, yesterday.
I’m going to try (seriously) to finish two reflection papers by the end of the weekend. My deadline is the 13th, but after Monday I’ll probably be swirled around cancer again. I have an appointment with an oncologist in Stockton on the 9th; my guess is that I’ll start interferon the following Monday. The first month I’m on that, I’m making no promises to anyone. After mid-July, I should be at least somewhat capable.
"How are you?" is a standard greeting question; it's thoughtless, most of the time. My friends, teachers, acquaintances ask me, like yours ask you. But they never mean, isn't it nice outside? They're really asking, how's your body and soul, how are you bearing up, what's next for you? I’m still sifting through receiving that question; it so often hits me at odd angles.
I've always given real answers: hungry, tired, happy, distracted, busy but fine. The difference is that now there is no accurate short phrase. I'll either answer with a shrug, or with a story. The shrug shortchanges both of us. The story can be a blessing, and therapeutic. It can also take me where I don't want to go.
A friend asked me this morning, how I was feeling. I know something of her history, and she knows mine. She knows I’m scared; she tried to get me to lighten up on myself. She was teasing me and laughing with me—but she made her point. I understood her intention, and I knew where it came from. I took it in, and I was fine with it. The context of the question was understanding and love.
I bumped into one of my faculty, later; not one I’m particularly close to, but they all know my story. He asked, out of genuine curiosity and concern. I told him. He’s had health issues of his own. He didn’t give me any advice; he just said it was good that I’d have someone caring for me, and he would pray for me. We connected.
Tonight, I nearly lost it with a school friend. She asked how I was, and I don’t remember how I answered. She told me I had done this well. I should have left well enough alone, but I didn’t. I asked her what she meant.
She told me I’d handled this experience with courage and grace. And that I could have been afraid of this, that, or the other (named, and described in detail), but that I’d taken it as it came.
Note: I am afraid of those things. I’m scared out of my wits. And I told her so. I didn’t need to have those monsters thrown at me. I told her what I’m really worried about: not having health insurance when I need it. Of course I can be watched—as long as I can see doctors.
She kept telling me not to worry until I had something to worry about—not hearing that the health concern itself is frightening, even with good care. She harped on it. Finally I just abruptly got up and left. I couldn’t talk about it anymore. Really, I couldn’t be talked at, anymore.
I guess the lesson is: Don’t come at me with an agenda. Don’t try to fix me. If you ask me how I am, and you’re inviting me to talk about any piece of this puzzle, listen more than you talk. Let me be who and how I am. Love me, where I am.
If you want to give me survival tips, do it from a place of connectedness with me. Know what you’re talking about. That’s why my other friend’s teasing was okay. She’s been where I am, and I knew it; and she’s come out on the other side. She listened, first. She looked at my homework, before she gave me her answers.
I may not be where anyone in particular wants me to be. I may need to hold onto something longer than you think I should. I need to work every step of this, because I need to learn from it. I have a pretty good sense of when I’m healthy and when I’m not. Let me explore at my own pace.
And if you don’t know what to say, to begin with? Less is more. Just tell me that you love me, and you’re praying for me. That’s what I need, more than anything. Love and prayer have sustained me.
PS: Susan, thank you for sushi again! :-)
Monday, June 02, 2008
…or, what my scar is teaching me.
I am still so scared, underneath everything. There’s a current of fear running through me all the time. It has nothing to do with knowing the side effects of interferon; that choice is simple. It increases my chances; therefore I’m taking it. (I start probably in two weeks.) If I can physically tolerate it, I will endure it. If not, I can stop. I’m not afraid of feeling horrible for a year, if it means life.
I’m afraid of statistics. A recurrence could be fatal. The disease process is awful. And right now, I could flip a statistical coin. Interferon is by no means a guarantee—but it could take me from 50% down to 30%. A 70% chance of not having to deal with this ever again, is passing.
It’s the uncertainty that gets you. I’m young, healthy, and strong—and I feel like I’m living on what may be borrowed time. I don’t know that it is. I don’t know that it isn’t. And I cannot wait five years to exhale.
I have a scar from the lymph node biopsy. It runs for about 2 ½ inches, directly beneath my ear down my neck. Every time I nod, or turn my head, I feel it. And I feel the fear, again. Sometimes I can feel the stiffness and remember, I’ve been somewhere. I can take it as wisdom, touch it and let it go. Other times, it throws me into a panic again.
I don’t care that my scar is visible. I care that I feel it all the time. I rub vitamin E into it whenever I think about it, to soften the tissue and to help it heal. I’d been doing that out of fear, more than out of love.
I was massaging it the other night, gently but less than kindly, when something stilled me. It came as a voice, almost: “Don’t do this to be expedient. Be here, with your body. Love it. Help it heal.”
I stopped. And I realized what I was doing. I started rubbing my neck again, slowly, in circles, with two fingers. I turned my music off, and I just was, there, with my body. I was there with the wound, and with the healing. I don’t know if words ever came to me. I was present, in a deep and still place: a place of knowing, awakening, healing.
Since then, that’s become something of a prayer time. Yesterday morning, I left late for church. I swiped some cream on my neck on my way out the door, planning to rub it in on the way. I forgot bus fare (which I didn’t need anyway) and had to come back for it, making myself later. So then I half-ran down the hill.
At the BART station, waiting for the train, I remembered. And I slowly, intentionally, with every healing will, rubbed the half-evaporated lotion into myself.
Be present. Be here, with your body. Know that what’s happening is deeper than your consciousness. Know that you are in the hands of God. Ally yourself, with healing.
When I think about cancer, I freeze in fear. Touching my scar, intentionally, helps me choose love.
Last night, lying in bed before I went to sleep, I rubbed in circles, over my scar. I felt for my pulse, and I stilled my fingers there.
I. am. alive.