I’ve done this meme in past years. I’m doing it now because I’ll be in the car all day, back and forth from the dermatologist, on New Year’s Eve. (I really don’t want to make that drive—but I still have this ridiculous rash, and I’d like it to be seen before February.) I’m going to the Ranch when it opens again after the holiday break, and I’ll be mostly there until Epiphany West.
So, here again is a paragraph of more-or-less nonsense, disjointed story-telling, the year in fast-forward. If you want to play, take the first sentence from every month in your 2008, and string them together.
Sleepily checking in from NOLA; it's 3:16 am West Coast time. I had another calling-dream, last night. Have to write a reflection paper; it was due a week ago. I’ve been only peripherally blogging, for awhile. I’m just going to sketch yesterday out, so you’ll know what you might expect if you or a friend ever has to ride this rollercoaster, and for my friends who are watching me. I am still so scared, underneath everything. Because my liver is toxic—and I don’t feel as bad as that sounds—I get to go back to the Ranch this weekend! I took a whirlwind trip to Berkeley yesterday, to keep an appointment at school. I had a conversation over IM with a friend [in New Orleans] this morning. The hardest thing is the unpredictability. No sicker than usual, but my wireless is. Still here, just busy… and trying to work through nausea, headaches, and no brain.
I had no idea, when I wrote that check-in from St. Andrew’s parish house in New Orleans last New Year’s Day, where I’d be a year later. (I could have guessed, curled up under a blanket on the floor in my best friend’s office, but that’s not what I’m talking about.) This year has taken me places I would never have imagined.
A conversation over sushi, a few days before Christmas:
“I’m still talking about losing my fears… and a year ago, I went to New Orleans alone. For a month. Before I had cancer.”
“I was scared, but I knew I’d be okay once I got there. And I was.”
“That’s the difference. You had to be brave. Now, you’d just go.”
“Well, yeah. Now I have friends there.”
“That’s not what I mean.”
“Oh. Yeah, now I’d ‘just go’ to Timbuktu.”
Let me say, again, as clearly as ever I can: Cancer sucks, but I would NOT give it back. This whole journey has given me way more than it took. I would never have found this fearlessness, if I had not had to. I would never have learned to trust myself, or my community, or my God, the way I do now. I would not be who I am, without the past eight months. Or the next six, until my treatment’s over. This will be working in me for a long, long time. And I want it to.
I miss my brain. But I can do things from here, that I could not do when I was well. I’ll get the cognitive function back. And I’ve become so much more spiritually open, and intuitive. I want to hold on to that.
I never want to forget how deeply and unspeakably grateful I am, to be alive.
I’ve known for some time, that the biopsy scar on my neck makes me human. I’m learning what that truly means. I touch it now, frequently, in utter thanksgiving. I have this story. I am a cancer survivor. I have a wound I can never deny—and I have the healing of it. I can go places I had no entry into, when I could act like I’d never been touched.
[I’m thinking here of Jacob wrestling with the angel. All that the angel finally had to do was touch him—and Jacob limped forever. But we all do. It’s just that some of us fight it, or don’t know it, or deny it. Jacob went everywhere he needed to go, the way that he needed to get there.]
I don’t believe that God gave me cancer. But God moved into the space that cancer made.
The nerves around my neck incision still feel a little sleepy. My jawline tingles, still. I’m not in a hurry for that to recede. I have no need to feel “normal.” I know this is a place I could get stuck in—but I want to fully inhabit where I am, before I move on.
We went to church in Capitola yesterday, before wandering out to the beach and the redwoods. (Big trees, and wet muck between bare toes—a glorious afternoon.) The sermon touched on “side effects.” She said something like, “perhaps leprosy, or insanity, may be a side effect of finding God.”
I’ve been rubbing that together in my fingers, ever since. I’m still not sure how I’d phrase it for myself. I’m not sure whether getting cancer (and going through it the way I did, and am) is a side effect of finding God—or whether finding God is a side effect of becoming truly human. Whatever the conjunction, I can’t separate them. Both happened. The wound healed me.
I know too much about resurrection, not to believe with all my soul.
Monday, December 29, 2008
I’ve done this meme in past years. I’m doing it now because I’ll be in the car all day, back and forth from the dermatologist, on New Year’s Eve. (I really don’t want to make that drive—but I still have this ridiculous rash, and I’d like it to be seen before February.) I’m going to the Ranch when it opens again after the holiday break, and I’ll be mostly there until Epiphany West.
Thursday, December 25, 2008
on Christmas morning:
I was walking through wintery woods, crunching the snow under my feet. It was full daylight, though it was very cold. I was alone. Everything was quiet. The forest was peaceful, yet trembling. There was a sense that the world was about to change.
I came upon a perfectly-laid fire, on the ground, in the snow, in the middle of nowhere. There was still nobody around. I knew, like you know these things, that this was just waiting for someone intended to light it. I didn’t know whether it was a traveler’s fire, or whether it was specifically mine. But I knew that someone (God or human) had left this for a person to find. This was a place, safe and warm, where you could wait for the Christ-child to come.
Not the original, incarnational Jesus. I was walking in Northwest woods, nowhere near Bethlehem, in our own time. This was a place, made by somebody and left to be found, where you could wait in hope until the world changed forever.
The woods knew that was happening tonight. The animals, and the trees, were full of expectation. Then, all would be love. There would be no unsafe places.
I came upon this fire, waiting for me or someone to light it. I had all this awareness. I knew it was a place of peace—and I was full of questions. Did God lay this fire, or a human? Is it meant for someone else, or for me? Is it okay if I keep exploring; am I insulting them if I don’t stay here? Should I keep going; let it be found by someone who needs it more than I do?
Because what I really wanted to do was to keep walking, to go deeper and wilder, to seek my own safety, to build my own fire. I was caught between accepting or rejecting someone else’s hospitality (not a good idea if that someone else is God), and being where I know I’m called to be, out on the very edges, where the wind is wild and the animals wilder, where anything can happen and you don’t know what you’ll find. I knew that if I built a fire, somewhere lonelier and colder, there would be warmth and light there.
That’s the relationship I’m called to be in, with God and the world, right now. But I was still considering these questions, in my dream, when I woke up.
And right now, I really want to go walking in the woods.
Sunday, December 21, 2008
I took pages of notes yesterday, and promised earlier that I’d post them. It doesn’t seem important right now, to share specific stories. Right now, I don’t care how the man handing out juice at St. Anthony’s soup kitchen looked at me, for instance. Describing exactly how the neighborhood “park” looked and felt like a jail, would only cloud my point.
What I need to do, is to say succinctly what I wrote in the direction of this morning. I need to articulate the lesson I took away from the experience, which none but God sought to teach me.
I purposely didn’t bring money with me, other than a BART pass. I wanted to know how it would feel to be in the city without it, and to be able to look people in the eye and say, “I haven’t got it,” when they asked. (As part of the Night Ministry, I’m not allowed to give money out even if I were inclined to. And I’m tired of lying.) I carried essentials like water, paper and pen, the neighborhood map they gave us. In my jeans pockets, I carried a handful of cough drops—which I ended up giving away—and an acorn from the Ranch.
The acorn was a purposeful addition; I wanted a touchstone. I wanted to be able to ground myself, if at any point I needed to connect (with nature, or deep breathing, or whatever). I never used it.
But I realized, not even until this morning when I was writing: I have been as afraid as I am ever going to be—and it was not in the Tenderloin. My fear of cancer, and my walking through that fear, gave me the freedom to go anywhere. I can be with people, and in places, in ways that I never could have—not because I was too naïve or frightful, but because I didn’t have the experience that has grounded me. I’m not going to do anything stupid, just to challenge my fear. I don’t need to. I’m already safe, everywhere I go.
I realized, I can carry whatever I want to—or walk with empty pockets. Acorns, cough drops, coins from the street, it doesn’t matter. What I bring with me, what I pick up and turn over and share, are rocks from the ground of God.
I was never told, like Margaret, that I would die. I was told that I could. I didn’t, and I’m making myself sick for a year to fight the chance of a much more dangerous recurrence. She told me to go barefoot at the Ranch, as much as I could, when it was warmer. She was right to remind me. But now I understand her real point. I have lived in the face of fear of dying. I have been to some very dark places. I found there healing, grace, fearlessness, and love. I threw my body into this, and I let the learning transform me. I have walked, and I walk now, on holy ground.
May it always be so.
Got my hand on the gospel plow,
Wouldn't take nothing for my journey now.
Keep your eyes on the prize, hold on...
I’ve been thinking a lot about last April.
I just came back from a week at the Ranch. I told the story whenever it came up, which was often—talking with a Franciscan sister whom I’d never met, seeing a friend I hadn’t seen since before last spring, bumping into a new acquaintance who’d only seen me at school. “Yes, the Ranch is my other gig… the semester’s over, but I’m not, because interferon makes it really hard for me to focus, and I’m always exhausted. Oh, I had a stage II melanoma last spring.”
I’ve lived with this for eight months, almost. I’ve told it so often, that telling it is easy. I’d say, “I had cancer,” and watch their faces change. They’d be thinking, “oh my God, poor you.” I’d quickly respond, “As far as we can see, they got it,” just to make them feel better. I am not poor; I am grateful to be alive. I would not trade who I am now for who I was then, or who I would be if I’d never had to face this.
Was talking with one of the Franciscans; we’re going to be exploring spiritual direction together. She wanted my story. I told her, I remember being back up here last summer, while I was on a reprieve from treatment. I remember saying to someone, in July, “Haven’t I survived this yet?” And no, I really hadn’t. While you’re a survivor from the first second you’re diagnosed, and the transformation begins in that instant, living through treatment takes you places I don’t even know if I can articulate yet. (The frustrating thing is that it takes your faculties away while you’re in it, so it’s harder to think, process, and communicate.) I’m still only halfway through. My last injection will be six months and one week from last Friday.
I hate being achy and exhausted and behind in everything. It’s frustrating not to be able to do what I used to do, and what I want to do. But I’m also grateful for this time. I’m able to ask questions, and go places (in myself and around me) that I wouldn’t have known existed. My teachers and friends and community members give me the grace to do what I need to do.
One of the greatest gifts is the utter loss of fear. I remember that first week. While I’m aware of how afraid I was, and can still get into that feeling place, most of what I remember is love. I was scared to death—but I only panicked on the phone with the doctor. After that, I did what I had to do. And my community thoroughly embraced me.
There are still tasks I don’t want to do—but I truly fear almost nothing, now. And I’ve learned so much about the gift of presence. Before last April, I was fearful all the time of being judged, and of not being good enough. Now, the people whose judgements I feared are some of my strongest allies. I know that they’re there for me. I know that they want to support me, and that they love me. I trust them.
I also trust myself. I’ve become so much more open. I’ve been where I don’t want to go again—and I’ve seen, and touched, and held the things that grow there. I brought back some rocks with me, in my pocket. I can go anywhere, now.
Including back into that place, as alone as I ever am, or accompanying others.
I can imagine being afraid, if the cancer recurs. I’ll give myself compassion if I am. But the most it can do is kill me. Death is only scary, the first time you stare at it. We know who we are. We know where we’re going. My whole experience of God has opened up.
God is not a personified image in my head anymore, at all. I realized that, sometime yesterday. God is, simply, love, interwoven into every fiber of the universe’s being. In what appears as a sterile concrete jungle, flowers. In the last places you'd think to look, grace.
[Which makes "Father" even harder to say, and more ridiculous, when God is "Ground."]
I have the faith that only comes from experience. And I escaped with my life. How can I be, other than grateful? How can I be, other than radically trusting? I feel, in the cosmic sense, safe. Completely.
I spent yesterday mostly alone, in the Tenderloin. I was on a street retreat with the Faithful Fools, as a requirement for volunteering with them. It was the first time I’d ever hung out there in the daytime, other than Open Cathedral. I took pages of notes, and I’ll post them later. For now, I’ll just say that I went the whole day without talking about cancer, until one of the RC Franciscans and I rode home together on BART. I only thought about it once, when I realized that I can’t do the week-long Holy Week retreat, not because I’m afraid of sleeping outside (I won’t take a shelter bed from someone who needs it), but because I need access to refrigeration.
I just got to be me, all day. Not me-with-limitations that I had to explain. Not, “I know I look great; I feel like crap.” Not, “I can’t walk this fast.” Just, me.
I really liked it. I’m looking forward to cancer being a story I tell when I choose to, and use quietly when I choose to. Everyone around me knows I had it—either because they’re in community with me, or because they need to know what I can and can’t do. I’m looking forward to simply living in the world, as the person I will have become.
Sunday, December 14, 2008
I’m up at the Ranch this week, working the Advent silent days. I’m hosting the odd lunch or dinner, and checking people in during the afternoons. Right now, I’m watching the wind and rain outside, and waiting for more arrivals. I can’t escape the brothers, even (or especially) here—and some of them are coming up today. I will shortly be hugged by three sopping wet monks.
And I’m wearing wool. Oh, well.
I love blustery weather! And I love hot soup on cold, wet days. I was blissed out over my lunch—and that’s big news, for someone who hasn’t eaten sufficiently since June. (It was miso soup w/ veggies, salad, bread and cheese, and a bulghur-artichoke concoction. Yum.)
My leftover homework is still with me, and my brain is still gone—but my body feels so much better up here. I’m still tired to the bone—but I’m not so relentlessly miserable.
I’ll be here until Friday. I’m going back to the city for a street retreat with the Faithful Fools on Saturday. To A’s house for Christmas, early next week. And I’ll be between there, here, and the Bay Area through January.
Note to Margaret, Paul, and anyone else who loves the place: The current newsletter (not on the website yet) mentions necessary upkeep on the treehouse. If you want to help, contact Sean.
Sunday, December 07, 2008
…and trying to work through nausea, headaches, and no brain. This is the last week of the term, and I have more to do than I will be able to do. But then I’m going to the Ranch for at least a week, and I’ll spend the rest of December and January catching up.
I got a flicker of amazing news, earlier in the week. Someone said to me that when we met, two years ago, I seemed very fragile. (I damn sure was.) He said he doesn’t see that in me now.
I worked for that. Not the feedback from him—which was a wonderful surprise (that surprises no one else). I worked to overcome woundedness, to be less reactive, to become whole. A few close friends, and one particular teacher, know how hard I worked it. Then cancer came, and did the rest.
I don’t ever, ever, ever want to get cancer again. But I am not sorry that I had it. Cancer gave me more than it took.
I was working these things. But I would not be where I am—I would not be who I am—without these past seven months. I would not have the soul that I have now. I would not have this deep strength.
To hear him say that I’ve lost my fragility, and to hear others echo, “well yeah it’s obvious,” makes it real. I’m not saying that my worth is on them. But it means that what I see and feel and know is beyond my own head, and beyond my safest relationships. This is who I am in the world now.
A couple of people told me today, that I looked like I was healing. They know better than to assume that since I look great, I must feel better as well. I told them, “I am. It’s just not physical.”
That is worth a stage II melanoma. It’s worth a surgery that only marked me if you know where you’re looking. It’s worth actively making myself sick for a year. It’s worth even the knowledge that I won’t be considered clear until 2013, and I’ll have to be very careful about my health insurance until we have a system change.
I’m thankful every day that it was only a stage II. Cancer scared me enough, to teach me how to live. And it was not lethal.
But it gave me what I needed.
Thursday, December 04, 2008
Tuesday, December 02, 2008
From Caminante, among others.
1. Started my own blog
2. Slept under the stars
3. Played in a band
(loosely—church retreat worship group, as a teen)
4. Visited Hawaii
5. Watched a meteor shower
6. Given more than I can afford to charity
7. Been to Disneyland/world
8. Climbed a mountain
(loosely—hiked up, climbed down Mt. Ellinor in the Olympics)
9. Held a praying mantis
10. Sung a solo
(as a performance, no—but in the shower or walking down the street, all the time)
11. Bungee jumped
(oh, hell no)
12. Visited Paris
(I was 7)
3. Watched lightning at sea
14. Taught myself an art from scratch
(well, sorta, when I re-learned to knit)
15. Adopted a child
16. Had food poisoning
(I think slightly, once)
17. Walked to the top of the Statue of Liberty
18. Grown my own vegetables
(and given them away)
19. Seen the Mona Lisa in France
20. Slept on an overnight train
21. Had a pillow fight
(of course—what kid doesn’t?)
(once, at Glacier Park in Montana. Friend and I were lost; we got a ride back up to the parking lot with a very nice old couple in an RV.)
23. Taken a sick day when you’re not ill
(yes—but all my sick days now, are real.)
24. Built a snow fort
(once, when we had enough)
25. Held a lamb
(but I have a pic of an honorary nephew holding a chick. He was three. He’s in college now.)
26. Gone skinny dipping
(Girl Scout camp, mid-80s. It’s better in salt water, at night. Phosphorescent critters bounce off of you.)
27. Run a Marathon
(no desire to)
28. Ridden in a gondola in Venice
29. Seen a total eclipse
(but I’ve seen lunar eclipses)
30. Watched a sunrise or sunset
31. Hit Kicked a home run
(third grade, kickball. The kid who most vehemently did not want me on his team, was extra mad.)
32. Been on a cruise
(no—but I’ve been canoe camping.)
33. Seen Niagara Falls in person
34. Visited the birthplace of my ancestors
35. Seen an Amish community
36. Taught myself a new language
(but I got a “teach yourself Arabic” book and played around with the alphabet.)
37. Had enough money to be truly satisfied
(I paid the bills, which was enough at the time. Money cannot ever make you happy.)
38. Seen the Leaning Tower of Pisa in person
39. Gone rock climbing
(I’d love to someday)
40. Seen Michelangelo’s David
41. Sung karaoke
42. Seen Old Faithful geyser erupt
(I think so? I’ve been there, as a young teen.)
43. Bought a stranger a meal at a restaurant
(but I was with a friend when she gave him a dollar and the rest of her sandwich.)
44. Visited Africa
(really want to)
45. Walked on a beach by moonlight
46. Been transported in an ambulance
(but I was back-boarded down a trail and into a motorboat, at camp)
47. Had my portrait painted
(Chalk drawing, actually—I think I was six.)
48. Gone deep sea fishing
49. Seen the Sistine Chapel in person
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling
52. Kissed in the rain
(but a friend told me about eating ice cream in the snow. I want to try that!)
53. Played in the mud
(that’s what kids do.)
54. Gone to a drive-in theater
(Twilight Zone, with my parents, in the rain)
55. Been in a movie
(but I have been in a news clip)
56. Visited the Great Wall of China
57. Started a business
58. Taken a martial arts class
(briefly, tai chi from a seminary classmate)
59. Visited Russia
60. Served at a soup kitchen
(I helped run one)
61. Sold Girl Scout Cookies
(2nd-8th grades. That’s the only reason I buy them.)
62. Gone whale watching
63. Got flowers for no reason
64. Donated blood, platelets or plasma
(I’ve never been allowed to.)
65. Gone sky diving
66. Visited a Nazi Concentration Camp
(but I’ve seen tattoos on survivor’s arms)
67. Bounced a check
68. Flown in a helicopter
69. Saved a favorite childhood toy
70. Visited the Lincoln Memorial
71. Eaten Caviar
(in high school Russian)
72. Pieced a quilt
73. Stood in Times Square
74. Toured the Everglades
75. Been fired from a job
(Orange Julius, age 18. After two weeks—when I’d made several messes, and burned my hand on the hot dog grill.)
76. Seen the Changing of the Guards in London
77. Broken a bone
(right pinkie, left middle toe. Separate incidents.)
78. Been on a speeding motorcycle
79. Seen the Grand Canyon in person
80. Published a book
(if a Young Authors conference in fourth or fifth grade counts. I bound it, and everything.)
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
(just like John?)
84. Had my picture in the newspaper
(school district rag, fourth grade, for winning the district spelling bee and beating all the eighth graders)
85. Read the entire Bible
(not systematically, but I’m fairly sure I’ve read it all.)
86. Visited the White House
87. Killed and prepared an animal for eating
88. Had chickenpox
89. Saved someone’s life
(but my doctors saved mine.)
90. Sat on a jury
(was called once, couldn’t serve.)
91. Met someone famous
92. Joined a book club
93. Lost a loved one
94. Had a baby
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
(but I fell out of a kayak into Lake Michigan)
97. Been involved in a law suit
98. Owned a cell phone
(got it when I moved to CA.)
99. Been stung by a bee
100. Ridden an elephant
Saturday, November 29, 2008
I had the wildest, whirlwind conversation I’ve ever had with a stranger (when I wasn’t working), at the downtown Berkeley BART yesterday.
I was on my monthly Kaiser Oakland run, for interferon and a blood test. Refusing to “shop” on Black Friday, I still had Christmas music in my MP3 player. And I felt oddly rested. (The only thing I’d done differently was drink wine with dinner—which I’m not supposed to do.)
So I was out of the house, at least, and in a pretty decent mood. Nothing really over-the-top glorious, though. I got a new BART pass, and went down to the platform. The readerboard said the next train was in six minutes. I sat down to wait.
I hadn’t been there more than ten seconds, when a man walked by, looked in my face, and said hi. Mind you, I was still listening to a choral group sing a bluegrass gospel Christmas song. I said hi back. He kept talking. I took my earbuds out.
He sat at the other end of the bench from me, and told me about being laid off from his truck-driving job three weeks ago. He’d hated the job anyway, and was fine about being laid off; he doesn’t have to “drive past other people’s lives” anymore. He felt like he was getting back into real life, now.
He never asked me for anything but connection. He wasn’t looking for anything but company. He was the happiest out-of-work person I’d ever seen.
He asked what I do.
“I’m a grad student, and a cancer survivor. I’m still on chemotherapy.”
“Oh. Congratulations. That’s a lot. What are you majoring in?”
“God. I’m up at the GTU.”
And, we were off. He told me about losing faith in God, in the late 90’s. Things got “really weird,” and he was seeing chakras, having "Buddha-Mara" experiences. He ran into “this Episcopal priest” who nudged him back toward Christianity. (I resisted the urge to ask who.) Turned out to be Matthew Fox. Then he looked Fox up online, and found something about him not forgiving the pope who silenced him. Enough of that—you can’t preach forgiveness if you don’t do it.
The train came, and we got on. He asked if I’d had spiritual experiences. Well, I haven’t seen chakras, but… I told him about the man who gave me communion at Open Cathedral. It wasn’t a vision, but a human interaction.
He got it. He stared at me for a second, and he looked at me more closely.
“You’ve been through a lot, and still… I can see from your countenance, you’re blessed.”
“Oh, I know I am.”
We pulled up at the Ashby station, and he got off.
And I’m thinking:
WHAT was that?
Just enjoy it,
all at once.
Margaret, I thought about you—and I’d have called you right there from the train, if I’d had your number in my phone. (I do now.) But I don’t think I could have spoken coherently. I’m not terribly sure I can now.
He had to work to look at me; I was wearing a sun hat. Which he said had a lot of character (thank you, MaryEllen). I was only wearing the hat because I wasn’t wearing sunblock—I’m still trying to figure out what’s causing my rash. And I had headphones in, for heaven’s sake. I like Chanticleer, but I wasn’t that blissed out—I was on my way to get the stuff that makes me sick. I was out just doing a chore.
Still. God tossed a human pry-bar at me, and there we were. This happy-go-lucky, out-of-work truck driver, spiritual seeker, incredibly bouncy character, reminded me again how blessed I am. By looking in my face and seeing it.
I had to go to the hospital for my blood test; the Fabiola lab was closed. I said to the tech, “I should tell you that I’m on interferon, and I’m hard to stick. They had to use my hand the last two times. I hate that.”
She gave me one of the easiest pokes I’ve ever had. In my arm, in the usual place. I bled just beautifully. And when I got home, my numbers were still fine.
People kept smiling at me, all day. It was weird, in a good way. I didn’t feel like I was glowing. But something was going on.
I took BART back to Berkeley, and started walking up the hill. By then, I was tired, and had to stop a lot. My backpack held five boxes of interferon (they gave me an extra week, to get me through Christmas), a heavy icepack from the pharmacy because I’d forgotten to freeze mine, and my mostly-full sharps box, which they couldn’t take. It didn’t really weigh all that much—but walking with it wore me down.
I remembered something from an Annie Dillard book I read in college; I think it’s in Teaching a Stone to Talk. She buys the communion wine for her church, and writes about walking all over that small town with the blood of Christ in her backpack.
I’ve always loved that. And it’s no doubt weird to make myself sick to keep myself well—but there I was also, carrying what medical science gives me for healing.
I would have never known that man’s story, if he hadn’t been bursting to tell it. If you look at me, I’m any random student who dresses like a mountain climber, walks slow, and stops a lot. You don’t know what’s inside my backpack, or what’s inside my soul. We only know each other, if we take out our earphones and talk. In the space between us, there is God.
If that kind of random, intense connection happened every day, I’d stop leaving my bedroom. I don’t have the energy to live like that full-time. But this was a gift.
Thank you, man in the BART station. Thank you, MaryEllen. Thank you, competent lab tech. Thank you, Annie Dillard. Thank you Craig, the teacher who introduced me to her work, who drowned in Costa Rica seven years ago.
And thank you God, for all of it.
Thursday, November 27, 2008
First, last, and always, for life.
For the health I have—and for that which I will recover. For friends, teachers, and mentors who have walked with me through the past seven months—and for those who knew me only before. For old friends I'm back in touch with. For community: school, church, online, on the street. For A., and for her cats. For Max (who does not have TB). For good medical care. For everything that cancer has given and taught me. For realizing only recently that I’m shedding not only my heroes, but the need for them—and that is as it should be. For Bernice Johnson Reagon’s voice. For my own. For work that I love and can do, which keeps me connected to God and the world beyond myself. For the way my legs feel when I come in from walking in the city half the night. For friendly, forgiving drag queens. (How could I have forgotten meeting someone named Ruby Slippers?) For the man in a hospital bracelet who gave me communion—and for the one who threw my demons in my face just by existing. For the grace everyone gives me, to be where I am. For laughter, joy, and normal conversations.
For food, and shelter, and friends who share. For love all around me, and for the grace to see it. And once again, for life.
I started with Jane's Miriam Makeba posts, and ended up at Bernice Johnson Reagon (via a search for Sweet Honey). I said below that I've essentially lost my heroes. I'm not sure that's true.
Can you feel where she sings from?
Monday, November 24, 2008
I’m really out of sorts right now, and don’t know if what words come out will be worth posting. I have to be civil in roughly three hours (10 pm—2 am), and I’m really writing this for therapy. I’ll post it if I think it might be good for other people.
My brain feels like confetti. I talked with one of my faculty today, who’s at least as much my friend as anyone will ever again be my teacher. (More on that in a minute.) She gets it—but I don’t know if I was clear at all, and I’m still chewing on what I was trying to say.
The title of this post refers to life post-cancer diagnosis. I’m really not post-nuclear yet, as I realized while I was talking. I’m still living in the middle of this. I’ll be post-explosion when I’m done with my shots. (I’m throwing an eviction party for the gnats in my brain, sometime shortly after the last Friday in June. If you can commute to the Bay Area and you like sushi, write me.) I am post-initial shock. I don’t resist the things I need to do to take care of myself, forever (hats and sunblock) or just for now (lots of sleep). I touch my biopsy scar, and I know how incredibly lucky I am to be alive and as well as I am. I tell the story, and I use it well—at the same time, I don’t have to talk about it. I don’t really think about it all 24/7.
But I have this new mystery rash. It’s on the backs of both hands, over both wrists, and all over the top of my right forearm. My face and neck are clear, so I don’t immediately think I’m reacting to my sunblock. My oncologist’s e-mail suggested it could be drug-related photosensitivity—but I haven’t been in the sun, unprotected. He hasn’t seen it (and my derm’s out of town), and you can’t diagnose a rash over e-mail. I’m wondering if it’s a new reaction to the interferon.
I don’t know yet, and my next dermatology/oncology appointments are New Year’s Eve and mid-January, respectively. In the meantime, hydrocortisone seems to help. (If I really felt emergent, I’d go in.) The itch isn’t driving me crazy.
It’s just one more thing. I don’t know where the rash is coming from. I can’t control whether, or where, or how fast it spreads. And if it is interferon-related, that’s not going to change what I do. I have seven more months of self-injections. I’m going to finish them. I don’t want to wonder what I could have put up with. I don’t ever want to have to deal with cancer again.
God willing and I get everything done, I’m graduating in May. I’m going (back) out into the world. Away from the circle of witnesses who saw me get cancer. Away from most of the people who have supported me through it. I can’t leave my ear, and my scar, here. They will never be just a part of “what happened in grad school.” They are with me forever, along with everything they teach me.
I said above, one of my faculty is my friend more than “anyone will ever again be my teacher.” I’m drawn to her, and respect her, because she has a fearless honesty that I think keeps her safe—and I know liberates the rest of us. She’s solid. But I can’t watch her and do what she does. Authenticity only comes from yourself. If I can’t drag something out of me, I’ll never find it.
I have been where my teachers couldn’t take me. My advisor told me at least twice last spring, that I was teaching the community by my example. I knew what she meant, and I tried to do it well. She also asked me, what God was doing with me. I had no idea. Seven months later, I think I do. Having cancer cured me of all kinds of just ridiculousness. I have so much less fear than I ever did. I don’t worry at all about what other people think of me. I can accept the love I’m given. I don’t feel solid in the sense that I see in a few of my friends—but I know I’m on my way there.
I just don’t have images, or models. I have mentors, teachers, friends—but they can’t take me where I need to go. I’m the only one who can do that.
I knew when I was diagnosed with cancer in the seminary fishbowl, no one was going to teach me how to do this. They couldn’t. You can’t, unless you’ve lived it. Unless you’ve been to the post-nuclear place yourself, and survived with your soul intact, all you can do is offer your love. (In the same sense, I couldn’t take anybody through foreclosure, or another shattering experience I haven’t had. I know what it’s like to be shaken—but not all tremors are the same.)
I can’t say, I want this quality or that one. I can’t look at other people and copy what they do. It just doesn’t compute, anymore. It may have something to do with having had (not really willingly) the responsibility of teaching my community what it was and is like to live through a cancer diagnosis and treatment. It’s definitely connected to going to a place where I had, and have, no teachers.
I want that solidity. I want that fearless honesty. The only person who can show me how, is me.
Wednesday, November 19, 2008
Bloodwork still "excellent." (Last test was Halloween.) Fatigue and achiness neither worse nor better; ibuprofen and sleep, respectively, still recommended. Yes, I'm nauseous, but I barely notice that unless I'm more exhausted than usual. Hair will do whatever it wants; I think that's slowing down. I asked about my lack of concentration (read: breeding gnats where my brain used to be). They've seen it before with interferon. So that's a known side effect, and I can't sleep it off. (I'd been blaming the fatigue.)
He asked "what's on your list of questions;" I told him I never quite got how interferon worked. He told me point-blank they don't know. Boosting my immune response can have some effect on cancer cells if I still have any.
Five months down; seven to go. I'll see him again in January.
Monday, November 17, 2008
I'm in the commuter lounge at school, re-reading a field ed journal posting and looking at my instructor's feedback (just e-mailed to me). At the same time, I'm chatting on Facebook with a friend about melanoma, interferon, and research.
The field ed assignment was about how wounds and scars transform our ministry. I read my own writing: "I'm past my medical crisis." Flip windows to Facebook, where my friend has written: "The studies I've read... show a 10-15% decreased risk of re-occurrence in people who take interferon."
And I'm sitting here barely breathing. She's a kind person. She meant to be reassuring. But the numbers still freeze me.
Truly, I can never be as afraid again, as I was between April and mid-summer. I know rationally, I survived and I am surviving and I will survive. I have no control over whether the cancer comes back, despite the treatment. I was mortally afraid, and I made it through. I know that nothing can ever defeat me again. I am stronger than I ever had imagined. God and community have always been with me.
But can I still be blindsided by a number? Hell yes. I'm "past my medical crisis" in the sense that I survived the tumor, and am surviving the treatment. In some ways, I am more whole than I've ever been. But I am not healed, truly. I have more work to do.
In that flash of fear, though, I know I love this life.
To Paul: thank you for comments below.
To Margaret: If I only had pictures! I'll send you some of Dymphna when they arrive. Suffice it to say for now: my rector was Sister Heada Lettuce. :-)
Saturday, November 15, 2008
I know, I haven't been posting regularly anyway. But I finally took my computer to the shop--rendering me (lap)topless until Friday. I may post short notes from the library (like right now), but I don't really have the environment to do anything reflective.
Other than the papers I have to get on top of. But the good news is, the shop people think they can fix it.
Posted by Kirstin at 1:41 PM
Friday, November 14, 2008
I went to my first ever, real, not-a-church-fundraiser, drag show. In the Tenderloin. For school credit.
I love my field ed. :-)
Oh, and I should mention that I'm waitressing at my church's drag show tonight. It's a fundraiser for our after-school program.
Monday, November 10, 2008
Our wireless is wonky. My laptop crashed. And I preached this morning. Here it is.
All Saints' Chapel, CDSP
“You are the salt of the earth.”
I grew up hearing that expression.
I remember my mom and my grandma saying
that this or that person was the salt of the earth.
I knew it was a vaguely good thing to be,
but I got stuck on the literal language.
I never quite got what it meant.
I went looking, and I found these references:
--an online Catholic social justice magazine
--a movie made in 1954 about a miners' strike,
for which the writers, director, and producers were all blacklisted
--a song from a Rolling Stones album
--a documentary about Palestinian Christians, made in 2004.
And, of course, the biblical reference.
I found information about the way salt was used
in the ancient Middle East,
both as a purifier and a preservative.
I thought about how salt is both a necessary and an everyday thing.
Touch your finger to your tongue.
Taste your tears.
Our bodies carry the same salinity as the ocean.
That is how basic salt is,
to the life of the planet
and to us.
The expression, when it refers to people,
can mean a few different things.
Salt of the earth is the finest kind of human being:
strong, dedicated, honest, hard-working, committed to justice.
Someone who uses their capabilities to make the world better.
It can refer to a humble and unpretentious person.
Or my favorite, and I confess I got it from Wikipedia:
Any person of interesting character, usually of the lower class.
Today we celebrate the feast day of Pope Leo I,
also known as Leo the Great.
The last definition I just read, does not apply to him.
We don't know much about Leo before he became Pope.
He was born about the year 400.
One tradition says he was born in Tuscany.
We do know that the Western Roman Empire was a mess.
It was beset by invasions.
The economic and political system was totally inefficient.
Still, Leo managed to grow up and get a good education.
He was ordained deacon,
and was responsible for looking after Church possessions,
managing the grain dole,
and for generally administering finances.
Again, this is not an ordinary person.
He did well enough to be unanimously elected Pope in the year 440.
He is known for his work to consolidate the Western church
under his own authority as the Bishop of Rome.
In Africa, Spain, and Gaul, he limited the powers of one bishop,
confirmed the rights of another,
and selected candidates for holy orders.
He also negotiated with Attila
when the Huns were about to sack Rome.
He persuaded them to withdraw from Italy.
His negotiations with the Vandals were less successful,
but he did manage to save the lives of the people of Rome.
Leo was a writer.
We have 143 letters and 96 sermons written by him.
They cover many doctrinal points, and the entire church year.
His work was all about purifying the church, doctrinally,
and preserving it against attackers.
He was a clearly powerful person,
both spiritually and temporally—
though I'm not sure I'd call him a diplomat.
He was smart, strong, capable,
and forceful enough to consolidate power under himself,
and to save his people on at least one occasion.
Leo is best known to us for his influence
at the Council of Chalcedon.
The council was called in the year 451, to deal with the heresy
that after the Incarnation there was only one nature in Christ,
and that nature was not consubstantial with us.
Leo's answer was a letter to the patriarch of Constantinople.
It became incorporated into the Council's definition of the faith.
I'm going to read you his core assertion.
Forgive me; it's a little long:
For not only is God believed to be both Almighty and the Father, but the Son is shown to be co-eternal with Him, differing in nothing from the Father because He is God from God, Almighty from Almighty, and being born from the Eternal one is co-eternal with Him; not later in point of time, not lower in power, not unlike in glory, not divided in essence: but at the same time the only begotten of the eternal Father was born eternal of the Holy Spirit and the Virgin Mary.
Without detriment therefore to the properties of either nature and substance which then came together in one person, majesty took on humility, strength weakness, eternity mortality: and for the paying off of the debt belonging to our condition inviolable nature was united with possible nature, so that, as suited the needs of our case, one and the same Mediator between God and men, the Man Christ Jesus, could both die with the one and not die with the other. Thus in the whole and perfect nature of true man was true God born, complete in what was His own, complete in what was ours.
Okay. I can't stand here and pretend
that it was easy for me to understand what I just read.
How about you?
Is it easy for you to relate to someone
who uses that kind of language?
Can you wrap your mind around that sentence structure,
let alone the vocabulary?
To me, it may as well have been in the original Latin.
I used to be quick like that.
Like Leo, I have lived by words.
I read for fun,
and I still attempt to write for sanity.
Now, words just circle around me.
I make occasional grabs at them as they float by.
We call it chemo-brain.
Most of you know that I was diagnosed last spring
with a Stage II melanoma.
It's potentially a very serious skin cancer.
We caught it before it spread.
I had surgery which may well have cured me.
But the secondary treatment is a year of interferon therapy,
to kill anything that may have been left
and to keep it from coming back.
I started with a month's worth of IV infusions over the summer,
and I inject myself three times a week now.
I'll be done at the end of June.
I'll get my body and my brain back then.
The worst side effect is fatigue.
I’ve been so exhausted for so long,
that I don’t have the concentration to comprehend what I read.
I look fine,
and I hear that many times a day.
But I feel run down and beaten up,
and I usually have a headache.
I don't have the endurance it takes to study like I used to.
If I didn’t already know Leo's point:
that Jesus is both fully human and fully divine,
because that is what redemption requires,
I wouldn't even try to understand him.
I need the reality of God shown to me in less intellectual ways.
I need my Incarnation a little more obvious.
Right now, I need my God with skin on.
You are the salt of the earth.
You are the finest kind of human being.
You are utterly common.
I'm doing my field ed at the San Francisco Night Ministry.
The daytime component of that is what we call Open Cathedral.
We do Eucharist outside,
in downtown San Francisco,
every Sunday afternoon at 2.
It's specifically intended to be church
where people who live on the street can feel welcome.
Anyone can come. (That includes all of you.)
And anything can happen.
If you're on Muni or BART, you get off at the Civic Center station.
Walk through the farmer's market, go behind the fountain,
and you'll find us.
We don't always start on time.
So that's where I was, a week and a day ago.
The service had started.
It was a cool, damp, sunny, busy downtown Sunday afternoon.
The last couple of times,
I've been in charge of welcoming people as they wander by,
You don't often see people doing church outside.
I looked out and saw a man walking toward us.
I don't know how old he was;
I'd guess about 50 but I'm often wrong.
Living outside can age you pretty quickly.
His clothes were rumpled.
He was shorter than I am.
At first glance, he looked like he'd had a difficult life.
He stopped just outside our circle.
I walked around, and said hi,
softly as I didn't want to scare him.
He wore a hospital bracelet,
and he dragged a suitcase on wheels behind him.
In his other hand, he held a basket of grapes from the farmers' market.
Just like this one.
And without speaking, he held it out to me.
[hand basket of grapes to lector]
The blood of Christ, the cup of salvation.
I responded as one of the nine lepers.
I took a grape, and ate it.
And I didn't realize that he had just given me the Eucharist,
until he had walked away
and it was too late to thank him.
But I give thanks for him now.
I don’t know his story.
I don't know his name.
Clearly he’d just been sprung from an overnight hospital stay—
but I don’t know where or why.
I don’t know if anybody visited him.
I don’t know where he was going,
or what awaited him there.
I give thanks for him, and for Leo,
for saints both in history and walking on the street.
I give thanks for those who did the intellectual work
of hacking out the relationships
between who God is and who we are.
I give thanks for people who can articulate their faith
in ways that I can't.
(If I ever could.)
And I give thanks for those who speak with open hands,
and a basket of grapes.
Who would never show up in a well-dressed church,
but whose response to grace is to share what they have.
Who may never speak a word about what they believe,
but who simply and quietly live it out.
Saturday, November 01, 2008
…but my wireless is. Our wireless at school could be out for two weeks. (I’m at a coffee shop now, before I head into the city for an all-day training.) So, please don’t worry if you don’t hear from me. If anything comes up that should be worried about, I’ll let someone know.
Had a blood test yesterday, in honor of Halloween. My numbers are great; my liver’s elevated, but not enough to alarm my doctor. Also got a flu shot, so now my arm hurts. Other than that, nothing more than the usual fatigue.
There are other things I’m thinking about and would like to post, but I don’t have time right now. Peace to all.
Saturday, October 25, 2008
I hadn’t realized it had been ten days since I'd written. Time blurs when you’re always sick. Thank you, all who have dropped by with thoughts and hugs. I need them, and appreciate them.
I’m just back from Reading Week; rather, I came back yesterday. I spent the first weekend of it at the Ranch, hosting and having a really great time. I walked outside as much as I could. (Yes, Margaret, the roses are still there.) It took me forever to make it up the hill to the peace pole, but I got there. For the first time ever, I didn’t leave a prayer—I just sat with everything around me. And I walked around the refectory playing count-the-friends; I knew at least somebody in each of the groups.
Came back that Sunday night to go out and do field ed. Again, I’m in the right place. I love the work, and the people. The hours suck, but I knew that.
I spent the rest of the week with A. in the valley. I really wanted and needed to catch up on work—but instead I took a lot of naps. I don’t regret them.
I would have stayed this weekend and taken care of the cats, or perhaps gone back to the Ranch, but I had to come back for another training last night, and Elisa’s funeral this afternoon. She died on Monday. I miss her, and I’m more sad now than I had been. The service itself was wonderful—though crowded, and hot. I really, really wish I’d seen her more. Last I saw her was about six months ago, at church, shortly after my own diagnosis. I came back in the fall, busy and sick, and kept meaning to send her a card but didn’t do it. By the time I was back, my rector told me that Elisa had almost too much company. I didn’t talk to the person at church who was coordinating her visits. I wish now that I had just seen her once in the last while.
I’m not even sure what I want to thank her for—we weren’t even all that close. But she had a way of seeing people. And, she was funny as hell. In a sly, dry, blunt and honest way.
I know it’s a cliché, but you only have people while you have them. Notice the gifts all around you. This is what matters. Give your love, and your time.
I escaped a much more dangerous diagnosis by sheer dumb luck. I had the tumor for at least two years. Nobody was expecting me to get cancer; least of all myself. It happens. Elisa died. I live.
Love the people around you. Be a gift to them.
Wednesday, October 15, 2008
There are things I’ve been thinking about and actually would like to say—but I don’t have the energy. I’ve been dragging all week, even more listless than usual. I’m not sure why; it could be that I haven’t recovered from walking to BART three days in a row over the weekend, or the sickness that’s going around (and which I have no other symptoms of).
I get used to one kind of malaise, and it changes. I hate that.
(By the way, BART is three-quarters of a mile from here. Downhill going there; uphill coming home. That’s nothing, in my former life.)
I’m sleeping a lot, though; I guess that’s good.
Monday, October 06, 2008
I had a blood test this morning. Almost everything was in the normal range. My liver’s better than it’s been in months. I was sure it was going to be wonky; it absolutely is not. One number is a few points higher than “normal”; the other is right where it should be.
The great news: my liver and bone marrow are doing their jobs, despite the assault I’m inflicting on them.
Which means, the fatigue simply is. The nausea (slight, thank goodness) and loss of appetite (mercurial) simply are. I’m so used to the nausea that I have to remember to count it—and really it’s more just urpiness. Lack of appetite means weight loss—still not a bad thing. (My comfiest pants are officially falling off—but they’re size 12. I’m hardly tiny.) I’m down to about my pre-seminary weight now, judging from the pair of pants I put on to do laundry, that hadn’t fit in two years. They feel fine.
Hair loss continues, but I’m not bald yet. It looks slightly thinner on the top of my head. My rector told me last week, about some people from my parish who are dyeing their hair purple for Advent. It’s a fundraiser for domestic violence awareness. I said, “I am in, with whatever hair I still have in December.” We joked about spray-painting my head.
All I can really complain about is worsening fatigue. For which there is no treatment, save rest. I can still walk long distances (essential both for lifestyle and for field ed), but I have to stop more often. If I’m standing still, I’m looking for a wall. And of course, my brain continues to be muddy. Church and chapel can be hard—not only because I’ve stopped trying to stand and pray (too much concentration), but sometimes the people and words and noise just blur, and overwhelm me, and I withdraw. I don’t have the energy to keep up. Classes and workshops—I go because I have to, and I’m thankful for my voice recorder.
I’ve still always done well, one on one. Which, again, I’ll have to do for field ed. That is work I really want to do—let alone, have to.
[If you want to be helpful, please don’t mention herbs or alternative therapies. They’re not tested against interferon. I’ve been advised not to take them, and I’m taking that to heart.]
I’m getting a headache, but I want to write this down. I’ll come back to it later:
Yesterday, I went to the Open Cathedral. I was able to stay standing (against the plastic folding table that we use for an altar, then a lunch line), pouring orange juice for people.
That's a big deal. The work really energizes me. I was standing on my own even afterward, talking to people I’ll work with.
I had a startling experience afterward, as we were packing up. Someone rode down on a bicycle; I introduced myself, and we got talking. He had had "sun cancer" (his term) much worse than mine. His mouth and nose were twisted, and he lost an eye. He lifted his sunglasses, and showed me the patch.
I looked up at him, under the brim of my sun-proof hat, and I stopped breathing. He said the exact same thing I do—it makes you refocus, value your life. I'm still thinking about that, him, how comparatively (and truly) lucky I am. I had, and have, good care. You have to know what you're looking for, to see the marks on me. Sometimes I really hate the treatment—but I have access to it.
Yes, you can have blessedness and terror in the same instant.
I’m also thinking of how often I complain about feeling like crap. Interferon is not fun. The most frustrating thing is that I’m always exhausted, and I can’t function cognitively like I used to. My doctors have me on watch for depression; I have a history of it, and this drug can apparently throw you into a tailspin without warning. It hasn’t happened yet.
My mood is fine; actually, I’m emotionally healthier than I was before the cancer. There are reasons for that, and graces in it. But I’ve been feeling, lately, too negative. I’m just so frustrated with the limitations I now have.
I need to turn that around. I realized this weekend that I give myself the shots, in a hurry, and don’t pray over them. I need to start. Supporting my healing in this backwards, weird way, making myself sick to keep myself well… it just needs to be held in holy space.
Why haven’t I done that, until now? I don’t know. But I still have nine months of this. The grace in that, is time to learn what it’s teaching me.
I’ll get my brain and body back, in July. But I won’t be who I am right now.
Wednesday, October 01, 2008
...is the unpredictability. Today was really low-energy: I went to class, but was only physically there. I didn’t want to talk to anyone. And I took a three-hour nap in the afternoon. I wanted to go to a Race and Religion forum in Alameda tonight, but I knew that if I went, I wouldn’t get Friday’s prayers written or a field ed journal (due last night at midnight) done. I don’t want to do them now; I want to go back to sleep.
I haven’t done the field ed journal because I had a headache from hell all day yesterday. By the time I remembered it, I had four hours—but had just come in from a workshop and was way beyond functioning. I went to bed, instead. The headache was directly related to interferon. The symptoms I get are exhaustion and soreness. I also hadn’t drunk enough water.
Today was supposed to be a functional day—such as I have them. I don’t know whether I was still affected by yesterday’s headache, or doing some honest-to-God work on Monday wore me out. That’s the thing—I have to listen to my body, but I don’t always know how to work with what it’s telling me. I have to learn to find capability within disability—but I never know what my limits are going to be. I can’t necessarily keep to a plan.
I still look fine. But I’m not. I honestly miss the days when my faculty would yell at me for having late work. I fully deserved it, and I knew it, no matter what I said at the time. But I was completely capable. Nobody would ever treat me that way now. They know I’m doing well just to go to class, for heaven’s sake.
For awhile I was afraid of trying, academically, because I was afraid of not being able to think or process or read or write. I broke that barrier the day I read for an hour, told my advisor, and she cheered for me. I don’t have to be brilliant. I just have to show up. The expectations that weigh so heavily on my peers, are not on me.
Nobody else tries to do chemo and school. I mean, come on. This is new for all of us.
I’m really behind on one particular thing. I know I could ask the faculty to step on me, and he would. (I already fear trying his patience more than I have.) But it wouldn’t help. This isn’t a self-discipline issue. The assignment itself is negotiated down as far as makes sense. He’s given me tons of grace already. I just need the energy to work on it. I did that for an hour the other day. I worked at the limits of my concentration. Gave myself a headache. But it felt so good to be able to try.
I need a few more hours like that. And today, I just felt like a turtle. My shell was down. It was not coming up, for the world. I didn’t feel ill—I just had no energy. I couldn’t engage with anybody or anything, and all I wanted to do was sleep.
I expect to be sick tomorrow; I took the shot tonight. But today, I really wanted to do my work.
Some days feel so positive. Some other days, I’m close to crying just from frustrated tiredness. The hard thing is not knowing, which day will be what.
I’m working on balance—being kind to myself, doing what I can, not pushing myself too hard and not coddling myself either. It’s hard, when I owe people projects. And when I know how much they’ve stretched for me.
Monday, September 29, 2008
In fact, it was exactly ten years ago, September 1998. I wanted to do it while I was still young enough and had an irresponsible-enough job, that I could get away with it. I went on a long Saturday bike ride, all over Seattle, and ended up at the condo of friends. They gave me a beer. We got talking, and I asked them to shave my head. They gave me another beer, and did it.
Bad idea. I looked like Hitler Youth, until it started growing back, then I looked like a wet rat, for months. I vowed I’d never do it again.
Some things change. Some vows, you don’t keep. I’ve been losing hair, in dribs and drabs, to interferon. My doctors told me I wouldn’t, and I didn’t, all through the infusions in June and July. I didn’t start shedding until I started the shots.
My doctors aren’t surprised that it’s happening, now. (Same dermatologist; new oncologist.) It’s listed as one of the “possible” side effects. Not one that everyone invariably gets, like exhaustion or the flu. As I understand it, I could continue shedding. It could speed up, or slow down. Or, it could stop at any time.
I still look almost normal. I think you have to know, to see. But I got my first, “Yeah, I can tell,” yesterday, when I was talking with a friend over breakfast before church. That, plus the general grossness I feel when I run my fingers over my itchy scalp and come out with pinches of hair, means it’s time to deal with this.
I’m not losing fistfuls or clumps, at any stretch. (I don’t want my mom to be horrified.) My hair is nowhere close to half out of my head. I’m more annoyed and bothered by the constancy of dead hair in my fingers (and in little clumps on my books on the floor), than anything. That’s what first prompted me to ask my cancer-survivor friends, what they did.
I got some good feedback, including this great line: “My dog shed, and I loved him.” Most of it boiled down to, you can do hats, or scarves, or whatever—or just ignore your head. You’ll know what’s right for you.
The stress of realizing I had to think about this, now, after surviving the illness itself, was hard for me. Once I’d made a decision, it’s easy. I already can’t stand the feel of my head anymore. I’m going to cut my hair significantly shorter, this week when I have energy and time. (I thought about going today, but took a needed nap.) I’ll shave it later, if I need to. But I don’t have to go from slightly-noticeable to bald, overnight.
At the same time, it’s okay to look like a chemotherapy patient. I am one. And I know that I’ve already survived the scariest thing that’s ever happened to me. This treatment wipes me right the hell out, but it does not threaten my life. I will get through it. And I will be healthy again, next summer.
It’s interesting that I’m still hung up on the idea of looking like a cancer patient. I don’t want to evoke pity that I don’t need. At the same time, I have limits I didn’t used to. It’s not a bad thing, for my looks to remind people that they can’t expect the same behavior out of me. And while I go to school with middle-class about-to-be-ministers, I spend my heart’s time on the margins. I have an “in,” so to speak. I’ve never been homeless, or suffered a mental illness worse than depression. I always had the support I needed. But my body’s in a margin of its own. The word “cancer” still strikes chills in anybody’s spine. My obvious battle with it—and my survival—can show that this is not invariably a death sentence.
I don’t cringe anymore when I see pale, puffy people in headscarves. I think, “You’re brave. You’re surviving. I salute you.”
So. My fear of looking pitiable is really all my own. I’ve never felt such strength, as when I was fighting for my life. And I’ve never seen it, save in the eyes of other survivors.
At the same time, physical illness or injury is understood. We don’t give the same grace to emotional challenges. I didn’t give myself that grace, when I was struggling with things that would have eased if I’d only had the courage then to talk about them. If I can be, both wounded and survivor, right there in class with my future-minister friends, I might be able to help them see that pain is okay. You get through it. And what’s helped me, and healed me, more than anything else is love.
I needed to learn this, too. I have so much less fear now—and also less acceptance for the fears I do have. I know that I am a survivor. And I am human. And I know that the only way to help anyone through fear—my own self included—is to sit right there with it. You can’t yell at it to make it go away. All you can do is accept the whole person. Much harder, when it’s you.
One of the deepest gifts in all of this, is just coming to me now. I made an announcement in church yesterday, saying that I wasn’t as able to be in community as I had been, and not to take it personally if I act withdrawn. Still, please keep praying. I went back to my seat afterward. The friend next to me held me. Another reached across her, to hold my hand. We didn't talk. It was simple love, and quiet strength. I sat there, with my head on her shoulder, being held by both of them, and just let the experience soak through my skin. I knew what I was receiving. And I knew that it was easier to receive, with my head out of the way.
I can’t think as quickly, or as complexly. But my heart is even more present, because my head cannot be. It’s so much easier now, to let people love me. And that, if you knew me before… wow. I needed this. And I have it.
I really do see it as, all this and survival too. I came so close. If I didn’t have health insurance, if I hadn’t had my skin checked (and checked again, when the worry nagged me), if the tumor had fired into me as it could have at any time. I live. I may have trouble getting health insurance again, forever. I do honestly fear that. But I live. I have this life, and this work, and these friends, and this purpose.
Love me. Don’t pity me. Nothing makes you love your life, like knowing how blessed you are to have it.
Saturday, September 27, 2008
I woke up this morning thinking about a friend. She’s an older woman from my church—but older, only in age. She’s a kind, playful soul with a sly sense of humor. And she’s in hospice right now, dying of the cancer she’s been fighting for two years. I may or may not see her again.
I haven’t seen her, in fact, since spring, shortly after my own diagnosis. She had a backache that became terminal pancreatic cancer. I had a Stage II melanoma, that I used to fidget with in class before I knew what it was. I had it removed, and I survive.
She’s dying of the disease, rather than the chemo which itself threatened to kill her until she stopped it. I’m taking one of the most toxic drugs my oncologist gives—and I’m “doing fine,” according to him. He told me on Wednesday that I’m “cancer-free.” I knew that he only meant now—we won’t know if it’s real, until it stays gone when I finish the treatment. Still, I got to hear that. And it made everything feel more possible.
I’m thinking about disease, capriciousness, death and survival, grace, love and time. I don’t know if I have any conclusions; I’m just sitting in this space. I’m fine, really—I’m well, except that I make myself sick at my doctors’ direction, so that I don’t get clinically ill again. Elisa is also fine, surrounded by love and held in God.
There’s something in that, that’s holding me.
I’m also trying to find capability within disability. I can walk as well as ever; standing exhausts me. If I sleep a lot, and drink enough water, I feel only tired, and not ill. I can follow a thought, and have a conversation, if you let me take my time. I remember quickness—but because I’ve temporarily lost that, doesn’t mean I can’t function. I function differently. And I’m still trying to work out how.
Someone said in a comment to my birthday post, that she’s glad I can turn outward because it says to her that the meds aren’t affecting me as they used to. That’s a false perception. I care as much as ever about people and things beyond myself. And I’m so much more withdrawn now, even if only socially. I just don’t have the energy to engage easily. I have permission to leave my three-hour class early whenever I need to. I do, because after listening to an hour and a half lecture, I don’t have it in me for a small group discussion. My brain hurts, just trying to pay attention. (And when I "pull my hair out," these days, it actually comes.)
Socially, I seek old friends because they’re easier to be with. The presence of certain faces comforts me, even if I don’t actually speak to them. I’m always afraid I’ll be perceived as rude by new people, because I don’t have the energy to get to know them. And I don’t care anymore, to follow intellectual discussions over lunch.
I have to stop telling myself I can’t study, or write, because it’s becoming a prophecy. But my brain doesn’t do what it did. This isn’t ADD. It’s trying to stand up, with a two-ton weight on your lap. (I read the epistle in chapel yesterday. In English. And I had to read it five times in my head, during rehearsal, before I grasped the sentence structure. While holding on to the podium, for balance.)
But can I still create things? Yeah. I’m blogging right now. It just takes more time. Words don’t come easily in the right order; meanings get jumbled. But I’m enough of an artist that I get into the puzzle. I know it’s temporary—I’ll get my brain back in July. I feel like I’m not losing myself completely, if I at least do this. Because I still can do this. I have to write prayers for next Friday—and I’m fairly sure I can. It takes a different presence, than pure intellect. My head has to struggle to be here. My heart, just is.
It’s very strange, to be as well as I am and as sick as I am. Most of what manifests isn't illness, but exhaustion caused by the drug. I control how sick I make myself, and for how long. I twist the pen to the right dose; I push the needle into my thigh. I know that if I stopped, I’d be completely capable within two weeks. And I know that I won’t even consider doing that. I can sacrifice competence now, for the possibility of life without cancer.
That choice shows me how much I love this life.
What I want, is to keep the energy and curiosity to be open to what this is teaching me.
I still control so much. And I expect to dance back into health, next summer. I am still, so powerful.
Wednesday, September 24, 2008
I proposed a support group for students like me--not that I'm aware of any. This is the e-mail I sent to the faculty, to let them know I'd done so. [The actual proposal followed.]
It serves as a reasonable update, so I'm posting it here.
I won't make a habit of crashing your list. I'm trying to start a support resource, both for myself and others. I want you to know about it, in case issues come up, say with your advisees. I sent this out to the student list earlier this afternoon.
How am I doing on treatment? My hair's thinning, but I don't think anyone really notices yet but me. I'm losing weight, but I needed to. The only thing I can really complain about is utter, debilitating exhaustion. I sleep--and nap--but it's never enough. Academically I have no business being here--I don't have those capabilities anymore. (Imagine being up all night--for months--and then concentrating, reading or writing. That's my brain right now.) But my health insurance is tied to school.
One of the frustrating things is being told constantly that I look great--and knowing that "great" is very relative. I can have a conversation, though if I'm interrupted I'll lose my thought completely. I can write a reflection, but it takes me all day. I can do heart-work at one in the morning (my field ed is at the Night Ministry); I'm always that tired anyway. The irony is that if I went off the drug, I'd be mentally and physically capable again within two weeks. But that's not what I need to do.
(I just came from an oncology appointment. He said that interferon may be the most toxic drug they give. And he said I'm doing fine. Which apparently means, I can get out of bed. I'm not depressed, and I'm only slightly nauseous. There's nothing you can do for fatigue, but sleep. If I were anemic, they'd transfuse me. He said my hemoglobin is better than his.)
Oh, and while none of you have mentioned my behavior in chapel, I know it's noticeable. I rarely stand through the Eucharistic Prayer anymore, because it takes too much concentration. While I can walk, standing still is exhausting. I pray sitting down.
While I have you: Every one of you has had my back, since I was diagnosed in April. I need your support, and I know that I have it in all kinds of ways. I can't thank you enough.
Tuesday, September 16, 2008
Wednesday, September 10, 2008
We write weekly journals for Field Ed. I wrote this today, and it seemed worth sharing. The week's questions:
What are some hopes you have about your upcoming year as a seminarian?
What are some fears?
I’m both exhausted and wired from last night. I loved it, and I can’t wait to go again. I postponed field ed to grow into the sense of call that propelled me to school. (God said, “Go; figure it out later.”) My friends are passionate about their parish ministries. Other experiences along the way—primarily two trips to post-Katrina New Orleans—turned me sharply outward. A talk with [one faculty] last spring, after I’d spent all of January in NOLA, helped me to see that I’m really not called into a parish. I’m called outside. I’ve been thinking since last winter of starting a chaplaincy for homeless people.
Obviously I need mentors. We’re not taught, in the classroom, how to do ministry on the margins. (I get frustrated when that’s perceived as strictly a diaconal call. Deacons rock. I want to be a priest to people who would never walk into a mainstream, middle-class parish.) And now I have them, in [the field ed instructor] and the Night Ministry staff. I’m surrounded by good, passionate, skilled people. I know I’ll learn what I need from this. And I’ll know where to go for more. This experience will feed the next.
I’ve been chomping to get out of the tower and into the world, since I got here—even as I held back from that leap until I knew what to jump into. I’m really ready now, and really eager to go. I know that my call is to the forgotten, and the exiled. Those are my people; that is my place. This is where I belong.
I learned in NOLA, and I heard (and felt) again last night: everything starts from presence. You show up. You open yourself; you listen. You let God, be. Even I can do that. Specialized skills will come.
My hope is to stay open and to keep this optimism. I know something about poverty; I know I have lots to learn. I only need half-time credits (thank God); depending on how my health holds up, I can give a lot. I’m going into this year with medical unknowns; all I can really say is, “Let’s just see.” I know I’ve put myself in the path I need to be. I’m doing my heart’s work, and I know God is here.
I’ve often had trouble juggling everything a seminarian juggles. With a lighter academic load, I’m hoping to stay better afloat.
My fear is obvious: sickness. All my tests were clean, last spring; a skin check yesterday turned up nothing (save one small, unusually dark mole). I’m trying not to worry about cancer. I’m exhausted all the time, and slightly nauseous, from treatment. I constantly feel as if I’ve been up all night. Going to bed earlier hasn’t helped, as much as naps do. I am trying to take good care of myself.
I feel in the rational sense, “Okay, you know they got it.” But right now I have a 50% chance of recurrence, even with clean tests. My doctors tell me not to worry, even as they say I’ll be free in five years. The first two years are the diciest. I do feel like I’m walking on a balance beam.
After you’ve been told (over the phone!) you have cancer, and lived through that first week of not knowing how serious it is… I know I still look open, alive, joyful. I am, and in some ways more so. Cancer gave me gifts. But I’ll never get that happy-go-luckiness back. I’ve gained a profound appreciation for life, and a deep awareness both of self and community. I have an empathy that I couldn’t have touched before April. I’ve lost an innocence that I can barely imagine now.
I’m not afraid of death. I’m nowhere near dying, even if I were afraid. I think I am afraid of being debilitated. Even as slightly as I am right now—exhausted as all getout and oddly able to function at 2 a.m.—my limits are much more obvious than they ever were. I’m not the reader, or the writer, that I was. Sleep is a strong temptation, and I’m not in a good rhythm yet. As a worker, I’m thoroughly inefficient. I’m just going to keep trying, and see how I do.
And yet, I am afraid of the crisis line. Being out at night, meeting people, doesn’t faze me. There is no fear, only a curious openness; a ready calm. I’m completely jazzed about the Open Cathedral. Talking with someone I can’t see, who is calling because they need to have a particular conversation and I’m who they get, scares me. I’ll learn it and I’ll do it and I may even become good at it—right now, it’s a foreign beast. But I’m going to be trained in October, however I feel about it now.
There’s a quote on the wall, opposite the crisis line phones: “Do one thing each day that scares you.” I know something about true fear, now. Getting re-acquainted with non-mortal fear—recognizing and accepting the feeling—is a curious place to be.
I walked around with the Night Minister last night. Had a great time. It was quiet (Tuesday), so he mostly oriented me to the Night Ministry, and to the neighborhood, and told me stories. We met a few people.
I felt safe. He's big. If I ever want to walk alone, I'll be allowed to, but not in the Tenderloin. They go out in other neighborhoods too.
I love the idea of being the presence of the church at night. It felt right to me. The only thing that really scares me is the crisis line--and I'll be trained before I'm on my own there.
So, a good beginning!
Friday, September 05, 2008
Thursday, September 04, 2008
I had a conversation over IM with a friend there this morning. She and her husband evacuated to Atlanta; it took them 21 hours to get there because the governor of Mississippi closed I-10 east. Said husband is recovering from major surgery. They’re not home yet.
I asked if I could do anything besides pray. She said not yet, but to check with ODR. I e-mailed them. I’m too frail to build a house; I feel constantly like I’ve been up all night. I have time in January, but I don’t know if I could afford the trip anyway. But if I can, and there’s work I can do, I’d go back in a nanosecond.
We’ll see what happens.
Sunday, August 31, 2008
Thursday, August 28, 2008
Oh, this old thing?
Thank you all for hanging in with me. Nothing’s really been happening that’s worth writing about. I’ve been doing well on the shots—so well that my oncologist suggested doubling the dose, yesterday. (I was only complaining about fatigue, and my numbers are fine.) I did it last night, and I feel yucky today. That also may be because I couldn’t sleep, and am just plain exhausted. I’m not nauseous; just tired, cranky, and sore.
Spent about an hour at the DMV today, and I now have a California driver’s license. Hurrah. My Washington license expires in three weeks, so I had to take care of it finally.
Starting back to school next week. I’m only going half time, which is good because I don’t quite know how it’s all going to work. I’m doing my field ed at the San Francisco Night Ministry. Very excited about that. But healthwise, I don’t know what will happen. School and the Night Ministry are aware of my medical needs. We’ll all just see.
Went to Berkeley yesterday because I had to get stuff out of storage (friends’ dorm rooms), and find my birth certificate for the DMV. It was good to see friends. Apparently I look wonderful, if pale. I had a good time, but tired very easily. I’m not used to throwing boxes around.
Note to classmates: I know we haven’t seen each other since the height of my crisis. But please don’t look at me with instant sympathy. Treat me like what I am: a friend you haven’t seen in awhile. Let me find my own feet socially, again.
I’m doing my best to survive this. Don’t perceive me as an automatic victim.
Oh, and another thing: “Did you have a good summer?” is a really silly question. The two weeks of genuine summer I had, treatment-free, were great. Being chemically sick is anything but fun.
“How was your summer?” is a perfectly legitimate question. “Was it good,” well, only in parts. The Monterey aquarium was fabulous. So was the Ranch. The infusion room sucked. Giving myself shots is matter-of-fact now, but was ooky in the beginning. Being sore and tired the next day: equally yuck. Being supported through this: a very good thing.
Was I well cared for? Did I move through any of the shock? Am I doing okay on treatment? Yes, so in those senses it was successful. But those aren’t really casual answers.
I’m back in the Valley now, through the weekend. Thinking about my friends in New Orleans, and keeping an eye on Gustav.
Again, thank you.
Sunday, August 17, 2008
I don’t know if or when I will.
I’m trying to claw my way out of inertia. “Depression” isn’t the right word; I have more of an emotional-exhaustion hangover. I don’t feel down, or numb; just tired. I really just want to stay in bed—and I have, some days—but that’s horribly unhealthy. I need to keep my toes in the world.
I need to find a way to catch up with myself, rest, and still stay among the living.
I went to the farmer’s market today around lunchtime. It was the best thing I’ve done in weeks; it got me up, dressed, and out of the house. Interacting with people. Feeling happy again.
Thank you all for dropping by, leaving me hugs, and suchlike. Noticed and very much appreciated. I just haven’t had it in me to respond.
I’m working on coming back to life.
Friday, August 01, 2008
I took a whirlwind trip to Berkeley yesterday, to keep an appointment at school. It felt so good to get out of the sick ward, even for a day. A. is fantastic—but I associate being out here with the reason I’m here. This would be a summer full of sickness and treatment; I couldn’t take care of myself. It’s good to get a change of scene.
I’m feeling, physically, better than I have in awhile. The shots don’t affect me nearly as much as the infusions did. I do them at night; when I wake up, stiff, sore, and nauseous, I take more Tylenol and Zofran. The soreness at least goes away. And it’s three times a week, not daily.
Emotionally, though, I'm not there yet. I keep thinking I’m out of the “oh my holy f*ck” stage. I’m really not. I bumped into two of my faculty, besides the one I’d planned to see, plus the admissions director and the dean of the School for Deacons. So I had the same conversation, five times:
“How are you?” (Very well-meaning, all of them.)
“I have no earthly idea… Physically better; I’m done with the infusions. I’m just shooting myself now.”
“How does that work?”
And I’d explain it—getting more creeped out by the second, as I did so. It’s not so much that the shots are creepy; diabetics do this every day, for life. It’s the reason. I keep going back to the “cancer!” headspace. I’m not free of it. I still feel like I’ll exhale in five years.
The field ed director got it: “All of us recognize… your reality has changed.”
Oh, yes it has.
I’ve been awful about responding to comments, or answering e-mails. I genuinely appreciate the attention. I’m glad that you all are in this with me. It’s just that I have no idea what to say. I’m in a holding pattern, between serious illness and the rest of life. I’m still scared witless. And I know I’ve survived, so far.
Thank you, all, for cheering me on.
Monday, July 28, 2008
…but I’m still kind of creeped out.
The needle itself is small and doesn’t hurt; the meds kind of burn. But once I get used to all the little steps and pieces, I’ll adjust to it.
Three times a week, through next June. But at least I only need bloodwork done once a month (not weekly like it has been).
Sunday, July 27, 2008
My liver, for purposes of medicating the rest of me, is fine. I start injecting myself tomorrow.
I wanted this; I wanted to be able to tolerate the full treatment. But I’m strangely sad right now. I think I’d be happier if I were done.
Friday, July 25, 2008
I had my last infusion today. I went in at 9, and was home a little after noon. Slept until about an hour and a half ago.
A blood test Sunday will tell us next steps; either I go in Monday for self-injection lessons, and follow that regimen three times a week for a year, or I’ll be done. It’s up to the toxicity of my liver. I know it could go either way.
I just finished a routine I kept with the daily regularity of a part-time summer job: get up, go to the infusion room, be treated, go home, sleep it off. Self-injections would continue that mindset, in a smaller way: make me sick to keep me strong; sacred challenge in the epi-pen. Go through my Monday as normal, poke, go to bed. Repeat every Wednesday and Friday.
(I never thought of the infusions as sacred. I kept my head down and forced myself through them. I didn’t have the energy for any other approach.)
I’m preparing myself for the idea of being done with cancer treatments. I don’t even know how I feel. In some ways, I’m fine; yay, the worst is over. I’m also still sort of shattered. Not in the sense of falling apart all the time, but shellshock. “WHAT was that all about, and what am I doing here?” (“Here” being bed, in my best friend’s house, resting from treatment, rather than working like all of my peers. And here, in this psychic space that few of my friends really know.)
Cancer interrupted my life with a howling wind. It taught me and it changed me, and it gave me some good gifts—it also devastated my basic sense of trust that each day will come, and go, and be followed by another. It seems so random—I’m young, healthy, strong—yet it came with the force of intent. Not to kill; as far as we know this didn’t invade my body. But to change.
Changes in habit: sunblock and hats, daily. Every time I get ready in the morning, I’m going to remember this spring and summer, and where I’ve been.
Changes in mindfulness: body and life are gifts. Do not forget that.
If I’m clean for five years, I can be done. That’s a long way from now. Oncology and dermatology visits will remind me.
(Pic from here.)
Sometimes I’m afraid, still, and sometimes I’m not. I don’t fear death, but the disease process of cancer, if it returns. Had a conversation with a friend last week, partly about mortality. Mine is in my face now like an African warrior mask, trembling, challenging me. “Be alive.” It has no intention yet of migrating to some subtle awareness in my back pocket.
I want that warrior mask right where it is, for as long as it has things to teach me. But sometimes I miss the ground I used to walk on, also. I didn’t know I was taking health for granted; it had never been taken from me.
I’m going to be working with this for a long time.
Sunday, July 20, 2008
Right now I’m not sure I have the energy to write this. I’ve had this window open in Word for about the last hour.
I’m on half-doses now, and haven’t had any interferon in two days (yay weekend!), but I still tire easily. I can function when I need to, in apparently short bursts. I’m only slightly nauseous; the Zofran controls that very well when I take it. I still feel like a limp dishrag, a lot of the time. I needed a nap yesterday, and never took it. Right now I probably ought to be sleeping.
One more week in the infusion room; then I start shooting myself (bang). A typical weekday:
I get up, and A. cuts my fruit for breakfast. (I can’t get my heplock wet, and it’s always in one or the other wrist. It comes out on Fridays.) I assemble the rest: milk, yogurt, cereal. One of the weirder things I’ve developed is a texture-aversion to dry, crunchy grains. So, no more Grape Nuts for me. A. got me some organic corn flakes (the only kind they had) from Trader Joe’s. Those are borderline okay.
She goes to work, and I run my bath. (We share a bathroom.) I wash as well as I can with one hand and a washcloth. The other arm hangs out to stay dry. (Some midweek evening, she washes my hair for me.) Then I drive myself to the infusion center.
The room is ringed with chairs; nurses’ desks are in cubes in the center. They tell me which chair to go to. I wrap a shawl around me, over shorts and a T-shirt. I get out my phone, iPod, and a book, and put them on a shelf next to the chair. (Each chair has a TV, but I never watch it.) The medical assistant takes my temperature, oxygen, and blood pressure, and brings me a cup of juice. She gives me a warm lap blanket (honestly a glorified sheet, out of the dryer). If it’s a Monday, she wraps both my forearms in another warm blanket, and I wait for the nurse to come.
On a Monday, the nurse frowns over my unsociable veins, and asks if I’ve had enough water. She finally pokes one or the other wrist, on the same side as my thumb. She puts the heplock in, or just plugs me into my IV fluid if it’s later in the week. I get a liter of hydration, dripped into me over two hours. I read or listen to music; sometimes I talk to my neighbors. I might try to nap, but it’s too bright, busy, and noisy to sleep there. One or the other pharmacist always checks in with me, and nurses pass by and say hi. I had two visits with a social worker last week; the first I’ve met since my diagnosis in April. (One more reason why I like my current oncologist; he set those meetings up.)
About an hour into it, the nurse comes by and gives me my pills: two Tylenol for fever, a Benadryl in case I react to the infusion, a Zofran for nausea. I take them while she’s standing there. She might come by one time later, to tell me how much longer I have. (I usually can’t see the screen on the IV pole; it’s turned out toward the center of the room.) An electric pump keeps the fluid dripping; if I need to go to the bathroom, I unplug the cord from the wall, wrap it over the top of the pole, and walk there, pushing my IV. The bathroom door’s never locked, so I knock before I go in.
When the hydration’s done, the pump starts beeping. My nurse comes and shows me my meds, making sure my name and the dosage are right. One of the nurses always asks my name; last week I was Joan of Arc. We laugh. They also always give me the same package insert, daily, with the side-effect information. I know them by now (and how!) but they’re required to by law.
She hooks up the bag of interferon, and it drips into me over half an hour. Then she unplugs me and tapes my hand so I can go home. I never hang out there, after; I have to get home before I get sick.
The effects are more subtle now, but they still happen. I get home, set up water by the bed (if I didn’t that morning), change into pajamas, take an Ativan, call A. and let her know I’m home safely, and lie down. I might sleep three or four hours. When I wake up, I’m still fatigued, and I might be just starting to raise a temperature. My fever usually abates by bedtime, leaving me feeling exhausted and beaten up.
The first round of these, fever and nausea knocked me down every day. I’m on the right med combination for the nausea, now, and the aches are not what they were. Now, I’m just fatigued a lot of the time.
I’m also three times toxic, as of this afternoon. My liver spiked much faster than last time. I know that if I’d kept the other oncologist, and let her continue giving me the full dose, I’d be over the limit (10x) now. We don’t do anything where I am, but watch me. Still, I’m a bit concerned.
Anybody have any good liver-detoxing tips? I don’t feel relatively bad; I just want to be able to continue with this treatment as long as I can. It’s the only thing that’s been remotely proven to work against the cancer I had.
Existentially I’m doing fine. Physically I’m sapped. But things are okay.
Tuesday, July 15, 2008
I'm tired and feel beaten up from interferon fever; this is a slightly edited e-mail that I sent last night. The news is good.
I got a new oncologist in the Valley. He listens! A. went with me. He listened to both of us (though I was feverish, achy and miserable), and answered our questions. He left the room for a good ten minutes, to research something. And he asked how the department could improve.
We're dropping me to half-doses, because my liver went toxic (it's normal again now). My old oncologist prescribed no change. The manufacturer's website reads, in case of liver toxicity you reduce the dose by half. I got really emotional in the infusion center; I thought they knew what they were supposed to be doing, and I don't want to get so toxic that I can't take this anymore. (If your liver enzymes are 10x too high, they stop you forever. Mine spiked to 5x normal.) I'm willing to be sick--with a reason. If they could have told me why they were continuing the full dose, I'd have done it. I didn't know that was even a decision I could make, and I was afraid of choosing wrong.
Will spare you the details of pushy nurses and pharmacists, and an oncologist I couldn't communicate with. (Literally. It wasn't about getting my way.) I'd been wanting to switch docs anyway, but couldn't get in until next week. My new doc squeezed me in today, at the last minute.
He listened. He answered both of our questions. My self-injections will be proportionally less, as well. I asked if they would still be effective. Yes. They start you with a lot, and whittle it down to what your body can do. My liver's sensitivity means, my body knows it's in there.
Will I be sick in the fall? Yes. But I won't know how sick until we transition me (in two weeks), and not as sick as I thought I'd be, or as I would have been.
Yay and alleluia. The food restrictions are lifting, also--they apply to traditional chemotherapy, not this. I can't have sushi while I'm still having infusions, but I can have fruits/veggies, raw and with their skins on, whenever I want.
A roller-coaster day, that ended well.