We're at a hotel a block or so from Kaiser. Eating sushi that was fresh several hours ago. Exhausted and anxious, but okay. And feeling embraced by the people of St. George's, Riverside, who haven't even met us yet.
More as either of us can. Blood draw in the morning, consultation at 10, and we go from there.
Wednesday, June 30, 2010
We're at a hotel a block or so from Kaiser. Eating sushi that was fresh several hours ago. Exhausted and anxious, but okay. And feeling embraced by the people of St. George's, Riverside, who haven't even met us yet.
Tuesday, June 29, 2010
Gently, though. It’s really okay.
I’m going to say something that might disturb some people. I don’t know. People tell me to fight like hell, and they’re right, and I do things that fit that description. I ask everyone who’s breathing to pray for me. (Community support is really, really big.) I’m going down to Riverside tomorrow so I can be admitted on Thursday, to get my body pumped full of chemicals that will make me feel unprintable so I can have a shot at getting rid of cancer. I’d rather not have to do that, but I’m going willingly.
I know what the odds of it working are. This treatment works very well for a very small percentage of people. And I’d rather be happily surprised if it works, than crushed if it doesn’t. So I’m not holding on to anything, even hope.
Do I hope it works? Of course. But I’m not investing my emotional energy in that possibility. A friend who’s an oncology nurse was telling me something to the effect that the mind and the emotions have an effect on the body’s ability to fight cancer. What she said makes sense. But I’m not in that rah-rah-warrior place. I have my sword out. But I’m curiously calm about it.
I already was more than hopeful, once. I was sure that interferon was working, and had worked. We had every reason to think I was clean. And I so wasn’t—I had this crap growing in me, even as we were attempting to prevent the possibility of it ever coming back. It didn’t spread through my palpable, detectable lymph nodes. It snuck in through my bloodstream.
I already didn’t respond to one treatment, which I fervently hoped and wanted to respond to. I know I have no control over my body’s (or the cancer cells’) response to this round either. A is hopeful, because that’s her way of coping. I’d rather be happy than devastated. So I’m more reserved, emotionally, than I ever am. That’s probably part of why I’m still so much in my head about everything.
All I did at the Ranch was walk and write. I am so grateful for that time. I never had to look at my watch—I just responded to mealtime bells when I heard them. And I spent most evenings with the Swifts, just hanging out. It was so amazingly restorative. By the time I left, I was genuinely happy, back in my own skin, and I’d come to some measure of peace.
I had breakfast Sunday morning with Caroline, the director’s wife. She gave me a rock on my way out. It’s a triangular piece of serpentine, about as tall as the palm of my hand. It’s shaped like a mountain. She found it, hiking in the Sierras. And she wrote a blessing on it for me.
I will have a little altar of spiritual homes, when I’m 400 miles from mine. And even that can be holy. One of my priests is calling my hospital room a hermitage. She’s right, really. I am going places spiritually that I never would if I were well. There is life here, and water, and I will not be truly alone.
I had a dream Sunday morning. (I usually wake really early, am up for a couple hours, and go back to sleep.) I was having some kind of medical test to see if the treatment was working. I could see my organs on a TV monitor, with red dots that needed to be measured—those were the tumors. I woke up before I knew what the results were. And it was really okay.
I left the Ranch on Sunday so I could go to church in Sacramento. I always watch the procession going by. I looked up from my hymnal, and caught my priest’s eye. She gave me a look of such absolute love. Her eyes said, “You can do this.” I locked my eyes on hers as long as I could, just drinking it in.
Her metaphor in her sermon was “scary field trips.” I got up at the time people usually go forward with birthdays and thanksgivings, and said, “If this is a thanksgiving, it’s for my community and my health care team.” I told them all what was up, and asked them to come with me in prayer. I know they are. She did the summation prayer that they always do, thanking God for all of us, the gifts we bring, and the gifts given to us. And she prayed especially for me, that I would feel the community’s prayers with me. I already do.
I went back and sat down. My friend held me for awhile.
I put my faith in love and modern medicine. I know what’s in the medical toolbox to fight the cancer I have. I am trusting medical science because I have no choice. I don’t do the faith-healer thing. But the only thing that heals my soul is love. And I’m being bathed in that right now.
I went home after church. A and I hadn’t seen each other in several days. We ate lunch. I reached around and touched my right shoulder—I don’t remember why; I must have had an itch. And I found another tumor.
Here was the thought process: “Oh. I bet I know what that is. Wait, is there a bump on the other side? No, the left side feels normal. Hmm, definitely not a knotted muscle. Damn. It’s real, then.”
The tumor I found is not a friend—it’s an enemy alien. Its presence signals disease that can kill me. But the tumor is also part of me. Finding it was almost a reassurance: you’re not living in a dream world, your body really does throw these.
I know that whatever happens to my body, the intrinsic me will be really okay. I know that like I have never known it before. And so I am genuinely not afraid. This second tumor is just a confirmation: this is life now. I am living where many people don’t go. And I have time now, while I feel well, to stand here with my eyes open.
Two years and two months ago? Not on your life. I was so afraid of everything, before cancer put it all in perspective. I don’t like having cancer that’s resistant to treatment. I don’t want to watch myself get progressively sicker. I don’t want to die. But these clear eyes are a gift of the disease.
UPDATE: A read this over my shoulder. She was holding me, and found another tumor, on my rib. I touched it and it's definitely there. (It can explain why my bra has felt tight.) We both just said, "Damn." I wonder why these are all showing up now?
I'm really not angry with my body anymore. That prayer has been answered. Mostly I feel sad for it--I know my body really tried.
I still feel so ridiculously well. I'll start feeling sick probably Friday morning. (I'll be admitted Thursday afternoon.) I wonder if it's reasonable to ask... can I please have more time to feel healthy? If this doesn't work, can we stop it before the disease itself makes me miserable?
Saturday, June 26, 2010
I found out tonight that I won't have internet in the hospital next week. My e-mail address is in my profile. Send me your phone number (or Facebook me) if you want me to have it.
I probably will have A and a flash drive--so may be able to blog a bit, however awkwardly. She'll post updates for me if I can't.
Friday, June 25, 2010
I’ve been trying too hard. I was walking around this morning thinking, “Isaac, Lazarus, Jesus... what do I do with this?” The only way I know how to interpret anything that matters is story. It's the opposite of preaching. I’m not given a text and a week to prepare. I’m given my own being, as context and form to shape any way I want to. Sacred stories are stars to navigate by. They are the brightest lights I have.
I can’t preach resurrection with my body or my words. I haven’t died. One of the most perceptive people I know told me yesterday, how strong and grounded I was over the phone. She would know—and she wouldn’t tell me if it weren’t so. And she’s right. I haven’t been to the truly dark and terrifying places. I know how loved I am, and that love is lifting me up. I know whose strong shoulders carry the weight with me, and for me. I trust them absolutely.
Love is letting me stand in a place of total unknowing, and feel safe.
I have to give myself permission to wander down the paths I need to. I need to poke a stick into the spider webs. You can’t rise up, when you’re already standing here. It's an incongruous thing to do on a gorgeous, perfectly temperate summer day, but I have some time before dinner. I think I'm going to walk with all of this, after I post it.
I really don’t want to do chemotherapy. I don’t want to go 400 miles away from almost everyone I know, so I can have the privilege of throwing up everywhere. I’m doing it because, as another of my clergy says, “we’re hard-wired for life.” I couldn’t consider not doing this. I am so damn grateful that I have health insurance. My oncologist is a tiger; that’s why I trust him.
I don’t know what I would do if I were given my life back. If, after my third admission, they tell me it’s working—I have no idea how I would hear that. Maybe I need to feel it in my body before I can imagine that reprieve. I don’t know. I’m not even wondering how to be normal—I have no idea how to take that information and live. I don’t know if I’d be rejoicing or completely undone. I suspect, a whole lot of both.
And what if it doesn’t work? What if they tell me, we’re sorry, but you’re one of the majority whom this doesn’t help? The options after that are a clinical trial or palliative care. I’ve imagined that so many times, just to prepare for it. I can tell you easily that I’m not afraid of death. I’ve spent a lot of time thinking about it. I've been sick from cancer treatment before. But I’ve never been close to physically dying. I’ve never embodied that exact space. I haven’t heard the words spoken to me, “We can’t do any more to help you.” I keep them at an emotional distance.
It’s back to body wisdom again. I can only speak from what I know. And right now I know that I’m sleepy in the middle of the day, because I don’t get enough rest at night. The same spot on my chest still feels tender. I still get winded more easily than I remember. I still can’t tell if my chest feels tight because I’m stressed, or if I’m less able physically to breathe deeply. My doctor didn’t say it was a problem, so maybe it’s my perception. It just occurred to me, at 3:30 p.m., that I haven’t had a headache all day.
I need to let myself go to all the places I don't want to go. I need to let my emotions feel the fear my body shivers from. Then I can talk about it. I will know what it is to walk into death, and to live.
I need to let my body be my teacher, now. And even that thought is healing. I'm being asked to listen. I'm being given an approach to respect my body, not to hate it. I can't be angry at her, while I'm sitting at her feet.
Thursday, June 24, 2010
I went walking this morning, up around the peace pole, to the Cristo, into the trailside sanctuary. Just walking, thinking, possibly praying. Being.
I wish I could take a picture of the smell. Warm earth rising, grasses drying in the sun. Hawks flying low, looking for food. Life.
I’ve been thinking about what resurrection might mean to me now. I felt it in my body, when I stopped interferon and started feeling healthier, thinking I was clean. I still hold on to the love of that same God. I know that my God holds me. But I wonder. I may not have that same physical sense of recovery of life, ever again. With interleukin alone, I have a slight chance of full remission, a slightly less slight chance of arresting the disease, and a whole lot of possibility that I will not feel truly well again. (I don’t know the statistics with the cocktail, and I don’t know how my doctor will make this choice.) When I had a stage II, I could believe that it wouldn’t come back. I could believe that we’d caught it in time; that I’d had a terrible scare, but that I would get my life as I knew it back. I’ll never have that sureness again. It’s in my bones now, in my lungs. And I’m almost not even choosing how I process this information. I am compelled to look for meaning in it. And so I am.
My body may not recover. But I will not, cannot, let go of resurrection. So what does that open up to? I sense an explosion, in the most hopeful and loving possible meaning of that word. I don’t know where it will be.
A friend asked this morning, how she could pray for me. I put my faith in love and modern medicine. Pray that I can love my body through this. I know that if I am to live through this experience, I need to come through it whole.
I mentioned that my breathing is starting to concern me. I have no idea if that’s cancer, or I’m short of breath because I’ve had more exercise in the past four days than I have in recent memory. It could be either. But this feels like the edge. I feel better now than I will, possibly ever again. I start chemo in a week.
I’m not trying to be morbid. I’m not courting death. I want to live. But I’m also slowly getting used to the idea of carrying this illness around in my body. How will I feel, if and as it progresses? I am living; I am not dying. But I could die. I don’t want to be surprised. I don’t ask, why did God do this? God doesn’t go around giving and taking diseases. I ask all the time, what can I do with it? While I have the power to act on any choices at all, what can I do right now? Who can I be?
Something has been hurting, in or on my chest. I touched until I felt a localized pain. It isn’t generic tightness. I’m not sure how long I’ve had it. It could be left over from yesterday, when the tech who did my stress test had trouble finding my heart with the ultrasound dealie. (Once she found it, it beat strong.) That could have aggravated a pain that was already there. Or it could be anything.
You don’t typically ponder your aches. If my shin hurts, there’s probably a bruise there. I probably bonked it on the corner of the bed. Not a big deal. Now, when something could be anything or it could be cancer—I’m trying not to be all hypochondriac about it, but I can’t help watching.
Is this the disease, beginning to close in on me? Is this what it will feel like? Odd pains here and there, that don’t go away? Pain that will get bigger until I need medication to control it? Will I be so loopy on pain meds that I won’t be able to communicate well? How long will I be able to think and write like I can now?
I am very much alive. I’m hanging out on the edges of potentially lethal illness, looking over the cliff into the water. I’m not falling yet. I don’t want to die, and I’m willing to make myself hideously sick to prevent that. But death holds no fear for me.
I will remember the owl I saw last summer. I will be able to follow her, when it is that time.
St. Francis of Assisi
Most high, all powerful, all good Lord! All praise is yours, all glory, all honor, and all blessing. To you, alone, Most High, do they belong. No mortal lips are worthy to pronounce your name.
Be praised, my Lord, through all your creatures, especially through my lord Brother Sun, who brings the day; and you give light through him. And he is beautiful and radiant in all his splendor! Of you, Most High, he bears the likeness.
Be praised, my Lord, through Sister Moon and the stars; in the heavens you have made them, precious and beautiful.
Be praised, my Lord, through Brothers Wind and Air, and clouds and storms, and all the weather, through which you give your creatures sustenance.
Be praised, My Lord, through Sister Water; she is very useful, and humble, and precious, and pure.
Be praised, my Lord, through Brother Fire, through whom you brighten the night. He is beautiful and cheerful, and powerful and strong.
Be praised, my Lord, through our sister Mother Earth, who feeds us and rules us, and produces various fruits with colored flowers and herbs.
Be praised, my Lord, through those who forgive for love of you; through those who endure sickness and trial. Happy those who endure in peace, for by you, Most High, they will be crowned.
Be praised, my Lord, through our Sister Bodily Death, from whose embrace no living person can escape. Woe to those who die in mortal sin! Happy those she finds doing your most holy will. The second death can do no harm to them.
Praise and bless my Lord, and give thanks, and serve him with great humility.
(Photo: Chapel window, The Bishop's Ranch, Healdsburg, CA. Taken by me.)
I woke up at 3:00 in the morning and started writing. That’s the way of things, these days. Even after an evening hike at the Ranch, and a glass of wine after dinner. I don’t have wireless where I’m staying (in the hermitage), so I’m posting this from the refectory after breakfast.
I’m in one of my favorite places. And I’m with some of my favorite people. The Ranch has always meant healing to me. Now, there’s a part of me that’s subtly desperate for exactly that. And I don’t even mean, physically.
Yesterday, I had a stress test at Kaiser to make sure I’m healthy enough to be poisoned. (I am.) I’d gotten a phone call while I was stuck in a traffic jam on the freeway; I checked the message when I got there. It was the nurse who runs the program in Riverside, giving me a date to start chemo. I’ll fly down on the 30th with A, have my consultation on the 1st at 10 a.m, and be admitted directly thereafter. I’ll be released on the 6th. A will pick me up (I won’t be allowed to leave alone), and we’ll fly home on the 7th. I’ll recover for two weeks, go back down for a week, recover at home for three, go back down. At the end of the third admission, I’ll have a PET scan to evaluate if and how it’s working. And we’ll go from there. (I have no idea yet what my options are, if it does not.)
I had my stress test, which checked out as normal. I called Riverside back, called A to give her that phone number, and called my priest to tell him I’d be late for our appointment.
The cathedral offices are upside-down right now, being recarpeted. So I called Brian again when I got there, and waited for him to show up. The operations manager’s wife is a breast cancer nurse in another health system. He asked how I was doing, and we talked for awhile. Brian picked me up and we walked to a lunch place in the neighborhood.
I was flipping through my notebook, looking for an open page. “Cancer, cancer, cancer, life. Here. I’m ready. Let’s go.”
He was the cheerleader I knew he’d be. It was the wildest conversation, doing math with the calendar and my treatment schedule, talking about when I could meet with the bishop and things I can do in the meantime—interspersed with incredulity that I, who look and act healthy, have this life-threatening illness. He never questioned my desire to take the sacraments to the river. He didn’t rub my face in the obviousness that we have no idea if I have time to do this the official, normal way. It was, “Okay, you want to enter the process. Here’s the usual timeline. Meeting with the bishop is the first step. When can we do that?” And I answered, “I think I’ll be home and feeling less sick... here.” If I guessed the wrong week, we can change it.
We finished our conversation. I went to REI, and then drove out to the Ranch. I got here at dinner. Opened the door, took two steps toward the staff table, and got hugged five times.
They are extended family, and they’ve always felt like that. We didn’t talk about cancer when the guests were around. I noticed right away how my own energy shifted inward, when people I didn’t know came to the table. (I’m not even necessarily hosting this week, which is new for me, and odd. It is completely my time.) But afterward, C took me walking with her old deaf dog. We pulled hitchikers (not people; plants with seedpods that stick to you). She alerted me to a robin's song. And she asked me questions, out of her own curiosity, that took me directly to the place I needed to speak from. How the cancer may have spread from two years ago, what I knew might happen from the first time I was diagnosed, how I’m feeling about it all now. Not in a probing into me kind of way; more like, “How does this happen?” I look and act deceptively well. Or I am deceptively ill. But I can do anything you can do, right now. And I’m aware that I feel better right now than I will, possibly ever. Sometimes I’ll notice that my breathing feels thick, and I wonder if it’s stress, me, or cancer. But that’s the only symptom I think I might have.
I still haven’t completely bought in to the fact that this is happening. If understanding facts intellectually, accepting that they apply to you, and not letting yourself feel the weight of them is denial, then denial is where I am. I’ve gotten great at dark humor. Not that I’m hiding there—it’s just the place I am.
I really don’t expect it to hit me emotionally until I’m in Riverside next week, away from everyone I know, with an IV drip in me, feeling like hell. Right now I’m completely in my head about it all.
I’ve been so angry with my body. But I think I might know why my body threw the tumor when it did. I think it was trying to signal me, while I still feel well. It may have been trying to tell me, “You have time right now. You don't know when you won't. Be alive.”
Tuesday, June 22, 2010
Healing time. Mmmm.
The break, for me, was all about finding a loving relationship with my body. And I'm not sure I'm there. But I know where I'm going.
A and I have been trying not to feed each other's stress levels. We had agreed before we left, that we needed to take it easy on each other and make sure we both had time alone. It turned out to never be an issue. I walked; she sat. I came back and we watched dolphins together, laughing. We had a really great time, all weekend. We weren't in cancer-land. We were free for two days. The wind and the water seemed to wash it all away.
I have a life-threatening illness that is "refractory" to treatment. I feel well, so this is all exponentially mind-blowing. And as hard as this is, it is relatively easier on me. While I feel well, suffering is mostly an abstraction. Last night I read the biochemotherapy information packet that Kaiser Riverside sent me; it arrived while we were at the beach. I processed it purely intellectually. This is what I need to bring with me; these are possible side effects; these are the statistics related to its working. I don't expect it to hit me emotionally until I'm down there, alone, feeling like crap, with an IV in me that's dripping the best shot I have to survive this.
I can't imagine what it's like to be A right now. And I have no advice for close friends or family. But I am getting love and support from all corners; more than I can begin to respond to. All of it very deeply appreciated. She doesn't have the support that I do.
We are best friends, and housemates. We're not partners. Our lives are mostly in different church and civic communities. My friends are my friends; hers are hers. There is some crossover, but not really that much. And because we don't present together in most places, I'm not sure that people get how much we are together in this. How we talk all the time about how to get through this. How much she is doing, and will need to do, for me.
If you know both of us, please do NOT hear this as, "OMG, A needs a note." She assured me that she knows how to ask for what she needs, and she isn't ready to receive the attention I'm receiving anyway. She'll tell you what she wants. I bring this up to say, if you know someone who is facing a life-threatening illness, and it isn't immediately obvious who their primary support people are, ask them. Ask how you can be present not only for the person who is sick, but for the people who love them the most. If the answer is, "Wait until she asks you," that's okay. (The question itself--that awareness--counts.) And if you know someone who has a friend with cancer, be aware that this is very real to them.
I know it is easier to be me and be the one who is sick, than it would be for me to watch anyone I love go through this. I watch her watch me. To know that one of the closest people in your life is wrestling daily with God and life and death, to know that she is deceptively ill even as you watch her go about her day and not yet struggle with her breathing, and to know that you'll likely lose her before you're ready to... as I said, if one of us has to have metastatic melanoma, I'm glad it's me. I'd be an absolute irredeemable mess, if she were the one who was sick.
I get so many e-mails saying, "We love you; what can we do?" I know that's a totally open-ended question, and I know that "check in with A" is a perfectly good answer. It isn't what she needs yet, from friends of mine whom she doesn't know. I don't know what I myself need, other than the love you're already giving. We're learning as we go. Hold us both in prayer, is the best thing I can tell you.
As I started out saying, the break for me was all about trying to love my body again. I'm not there yet--but I have a foothold. I took a walk yesterday, while A walked with her good friend (and former rector). Margaret had asked me to throw something into her beloved ocean. I walked, ankle-deep in the water, and I skipped rocks. I was thinking about her and Joel and Juan, how she is my older sister and she says I am her teacher now, how there's nothing to like about cancer but she found me because I was diagnosed (thank you MadPriest), how she kept reminding me to hold on to resurrection. How I still hold on to the love of God, but how I don't know what resurrection means now, fighting cancer for the second time. I had thought I was clean, but I wasn't. My body carries this. It is in me and part of me. Sister death will always be at my shadow.
I walked, and I skipped rocks. I watched a wave pull a clam shell into the water, skittering over the sand. The ocean drew its creature back into itself. And I didn't need to throw rocks anymore.
I stood still in the water, and I felt the waves rock me. I watched the dolphins swim and play and leap. And I knew what I needed to know.
When I walked out of the water, I couldn't stop saying thank you.
Saturday, June 19, 2010
Stress headache. Pretty near constant. And every time I get one, I think, "Okay... the doctor didn't say 'brain'..."
I mean, really. I don't want to be a textbook, "Oh, she's right at 'denial' on the grief scale." But my bones don't hurt. If I didn't know I had lung involvement, I wouldn't think about my breathing any more than a mild asthmatic with California allergies ever does. I can get up and move and do what I want to do.
I had time the other day with one of my priests and the Canon to the Ordinary. Kathleen and I had been talking for an hour, in the solarium at church. She needed to go to a meeting with Britt; I said I'd forgotten to eat lunch. (It was 3:30.) So she invited me along to Bernardo's. The three of us, and Kathleen's new dog, sat outside. It was a gorgeous day. I knew I was with enviable company, and I wanted to be with them. Britt knew how to be with me--curious, compassionate, asking questions about both the illness and the ministries I do. (I know she's an ally now, and I know she will be after this is over.) It was so normal--and it so wasn't.
I had only just begun to let myself feel my grief and frustration. I had just cried for the first time, talking with Kathleen. She completely gets it, supports me and is my ally--but the ally that I don't have is time. We'd been talking about the surreality of all of this, and I finally said, "If I wanted to bungee-jump off the Golden Gate, I would do it. I want to do what you can do. And the process takes time."
All I want to do is take the sacraments to the river and feed people. I've been encouraged to go outside the institution to do it. I know that I could, in a word, "just grab bread and go." I have the approval of the people I care about: the clergy who see me and know me, others who work with me and watch me on hosting nights, Safe Ground. I don't know why the church's blessing matters so much to me. I don't know why I want to serve this institution. But it does, and I do.
We're going to work with my treatment schedule, and get that process going. It takes years. I'm living with the absence of all guarantees. But for some reason, I have this desire and I can't shake it. I'm called to do this, in this way.
That may change. If I know I'm physically running out of time, or if the powers-that-be at the cathedral or the bishop tell me I'm too sick and need to wait until I'm well, I know I have an alternative. But for now, this process is what I'm called into.
That certainty palliates the grief a little. I need the bishop's permission, and I don't know how he'll feel about allowing me into rigorous community discernment while I'm exhausted, achy, and nauseous. But I couldn't be any clearer than I am. I already have one "yes" that matters. And I can be as articulate as any human ought to be, about why I need to do this. Why the homeless community needs me to do this.
A and I have a game. I'll ask over and over and over, ever more insistently, for an imaginary object. She'll come up with an imaginary location for it, out of reach. We were into it last night, laughing and being ridiculous, when I had to stop. I was putting my grief into this game. I want life, and time. She can't give them to me. My health care team will do their damnedest. We don't know how my body will respond to treatment.
I feel as well as you do. And I have a killer in my lungs and bones.
I mean, really. Hey God. You made the universe. What the fuck? Why give me this desire, if I don't have time to do it? Why is that the thing that focuses, when I need to put my energy into my health? You are everywhere in this, except in the cause of the illness because I can't imagine you giving it to me. So what do I do now? And don't you think you ought to tweak that evolution thing just a little bit? Cells are supposed to grow where they belong. Not everywhere.
I know that if I am to live through this, I need to come through it whole. Body, mind, spirit, soul. Purpose and process and being. Total integrity.
And I don't know how to stop being angry at my body. I know rationally, it didn't choose this. The cancer cells went bananas and invaded where they weren't supposed to. A body, given the idea of sentience, wants to be healthy and strong, and support the being who inhabits it. My body is as much a "victim" as I am.
I know I need to learn to love my body and support it. I can get as far as, "I'm sorry, bones, that I'm mad at you." And I stop there. I keep thinking, "Why the fuck did you let this in?"
I tortured myself for a year. And here I am, a breath short of a year later, with stage IV disease. I knew a recurrence was statistically possible. But I had not imagined it would ever be this rampant.
I look too well for this. I feel too well for this. And here I am.
My spiritual director suggested that I write a dialogue between my body and myself. Give my body a chance to speak, let it have a voice, tell me what it knows. I haven't tried that yet. Maybe I ought to, soon.
Frustration. Denial, at the same time as I hunger for information. Grief. A need to believe in the treatment, even as I don't trust my body as far as I could throw it. Here is where I am.
We're going to Santa Cruz tomorrow, until Monday. A's good friend is a priest in Aptos. He knows, and we'll visit there. I can't wait for space and wind and sand between my toes.
Friday, June 18, 2010
"I have veins you could hit with a harpoon from a door three blocks down."
Oh, wow, are the next several months going to be fun. More of the details as I know them; I won't have the consultation/be admitted until closer to the July 4 weekend. The hospital (Kaiser Riverside) is sending me a packet so I'll understand a bit better, as well.
Fly down to Riverside. Meet doctor, ask questions. Have everything explained to me. Be admitted that night, for close to a week. Fly home for two weeks. Back south for one. Home for three, back for one. Evaluate whether and how my body is responding to treatment. Keep at it, or try something else.
The rug has been slipping out from under me since April 25, 2008. But until three days ago, I at least had the illusion of threads.
I have to believe in this, or at least hope. The nurse who runs the program said that the most admissions they've ever done is ten. That was seven years ago, and the person is still alive.
Thursday, June 17, 2010
But not because I can't--because I'm not letting myself. I don't really want to let myself go into that until probably tomorrow night, when I'll have time to.
I got the news yesterday, sometime between 11 and noon. Called A at work; she said she'd come home. Took a shower because I hadn't yet. Called a few others: teachers, clergy. I wanted them to know before I put it on Facebook, and I wanted to hear their voices.
A came home, already feeling it. I wasn't. We sat at the kitchen table and talked about practical details: giving her my passwords and that sort of thing. We both did our own thing for a bit, then we went to a local park that has a Japanese garden and a zoo. I wanted to walk barefoot. The garden was closed, so we walked around looking at monkeys and turtles for awhile.
We came home. She made dinner while I did Facebook and e-mail. I'm completely overwhelmed by the response my news has gotten. So. much. love. I'm not even letting myself feel that yet--I'm saving it for later, when I've begun to come to terms with this in my own self.
We made ourselves eat; neither of us wanted to. I don't feel this emotionally--or rather, I'm only beginning to. All of my anxiety is in my body.
We slept. I woke up before the alarm, looked at my inbox again, and IM'ed with Margaret until she had to go to work. We got up, forced ourselves through showers and breakfast. I rode with A to work so I could use the car today, and now I'm back home. I have a breathing test at Kaiser Sac at 1 this afternoon. Then I'm going to Trinity to find Kathleen. I asked her for time; no agenda, just wanting to connect. After that, I have an appointment with my spiritual director. Yesterday I wanted to talk to her about this. Today I don't.
I might or might not go back to Trinity afterward for dinner. Thursday dinners were my project and I organized them--I've just handed it off, because I can't do that responsibility and my own health now. Part of me wants the attention; knows they know, wants the love. Part of me isn't ready to face that much attention yet. I need to feel my own emotions first. It's not like when I went to the ordinations at Grace, loving my ordinand friends, needing hugs and knowing I'd get them. This is so much more serious. It's not, "You're probably clean; don't worry." It's, "I'm so sorry I had to tell you. You've got it in your bones, lungs, and several other places." I know exactly what my odds are. I know where we're at with treatment options. This is stage IV melanoma.
I'm still waiting for the doctor in Riverside to call me. I'm anxious about that too. I want some time to be healthy. I wonder if it's realistic to ask for July?
Of course I will fight. All my instincts say, cooperate with the doctors' best efforts. I would rather live than die. I also know that I don't control my body's response to treatment. If I had that power, I'd have been done a year ago. I know I'm in the fight of my life, and I'm present and willing to do what I need to. If I throw up six times a day, but the treatment's working, then I'll keep throwing up for the sake of survival. I also know that it could go either way, and that I am more likely to die than to live. I want to go where this takes me, with my eyes open.
I didn't ask for a cancer ministry. But I have it. And I want to do it well. I write for myself, in public--and I have an idea of the effect of these words. I go where this takes me, and I report from those places. I'm willing to do that as long as I'm able to.
But I don't want to be a movie of the week, you know? This isn't about some fake sappy heroism. If I survive this, living through it as transparently as I can, I will be so much better at everything. One of my teachers told me, "It's an awful way to get ministry skills. But you're getting them." She was right. Can I enter into pain without fear? Yes.
Mindful that I haven't talked to the doctor in Riverside. He may have other ideas. There may be reasons that I'm not eligible for IL-2. There may be other viable options (trials, etc). There may not be. I have no real idea where I'm going.
All I know is that I will never be alone again.
Did God have anything to do with me getting cancer? Fuck no. God would way rather me be hanging out with homeless people. But here I am, and here God is, and here are the people who love me.
I wrote that I almost hoped we'd find something; I wanted to see my body respond well to treatment. Part of me is shocked to the bone that we did find something. But I think I also knew, as soon as I felt that tumor inside me three weeks ago, that there would be more. And I think that my "almost hoping" was really, getting ready.
I have no idea where this is taking me. But I know that I can go there. It's easier, when it's your own self. I hurt more for the people who love me.
Wednesday, June 16, 2010
It isn't real to me yet; the friends I've told are stunned, and I don't even feel it. It's still a scientific puzzle.
My doctor called with my PET scan results. He was sure it would be clean; I look and feel well. I have metastases to my lungs, bones, and "several other places." Apparently they're small enough and diffuse enough so that they're not in my way yet; I can breathe as always, and I haven't had any fractures. They suspect that it spread through my bloodstream.
How can you have stage IV melanoma and feel fine? I don't know. But here I am.
My oncologist in Sac is referring me to a doctor at Kaiser Riverside for treatment; he says that interleukin-2 (immunotherapy requiring multiple hospital admissions, very effective on those for whom it works) is the best thing in the current toolbox for me, and that's where it's done. I haven't talked to the doctor in Riverside yet; I thought he'd call today. I'm hoping I can do the treatments in Sacramento so my friends can visit me.
That's all I know that's even remotely definite. My doctors are as shocked as I am.
I hate what this is doing to the people who love me. It hasn't caught up with me emotionally at all.
I know I'm in your prayers. Please keep holding me there.
"Lungs, bones, several other places." It hasn't begun to hit me yet. My friends are stunned by this--to me it's still a scientific puzzle.
I mean, I'm healthy. I feel as well as you do. What the fuck?! Apparently they're small enough and diffuse enough so that they're not in my way. I'm breathing okay, and haven't had any fractures.
My doctors are as shocked as I am.
We're talking about interleukin-2. The doctor who will supervise that (not my primary oncologist, based at Kaiser Riverside) hasn't called yet.
More when I can begin to process this.
Monday, June 14, 2010
I don't have the results of my PET yet; it hadn't been read by this afternoon. Nor do I know whether what I had was a metastasis or a new primary. My new oncologist is going to connect with the pathologist in Oakland from two years ago, compare results, and call me tomorrow. I'll also find out whether there are any appropriate clinical trials.
I like my new doctor. He seems really on it. I told him I didn't have a spleen, while he was examining me. He already knew I had spherocytosis. He'd clearly read my stuff. (He asked how anemic I'd been. "No clue. I was almost six.") And he got what I was saying when I asked him, "WHAT is my body doing?", even as the only answer he could give me was, "Melanoma is unpredictable."
He was very concerned that I get into dermatology care up there; I'd missed my appointment two weeks ago in Oakland while I was recovering from surgery. I won't have to call; he'll make the referral.
He didn't feel anything odd during the examination, and he thinks (from that and because I generally look healthy) that the PET will be clean. I told him that my last one was too. And I asked him, "What's your hunch? Do I have more of this that we can't see yet?" He said, probably yes.
The short of it is that I probably am growing more of this crap, we don't know if my immmune system will squash it (clearly it didn't here), interferon "wasn't very effective" (duh), and the best next step will be frequent observation and possibly a clinical trial. Chemotherapy doesn't really work on melanoma. IL-2 (immunotherapy, very effective for a very few people) is only used against advanced disease. So I'll go in every couple of months for examinations. I won't be made miserable like I was on interferon. I won't be hideously, artificially sick, unless and until I develop something that immunotherapy could fight.
He knows my oncologist in Oakland. Said he'd be shocked by my news. I've been wanting to connect with that doctor anyway, so I sent him a note when I got home.
I trust the care I'm getting. I don't trust my body. A kept saying afterward, "You're alive." I didn't even really hear her. I couldn't process it; couldn't believe it. I wasn't ready to hear that I'd been given my life back.
We stopped for mango lassis and garlic naan for the road, because we both were hungry. I called one of my teachers, because I had told her I would let her know my medical news ASAP and because I wanted to hear her voice. Then we went to the 5:45 Eucharist at Trinity. We'd been planning to; we both knew we would need it.
The presider was one of my mentors. A and I were the only people in the transept when she arrived. She asked how I was, and we talked for a minute. She invited us to light the candles while she vested.
It was the feast of St. Basil, so we used Prayer D. I didn't know I needed it, but the words were food. (I'm a Prayer B junkie for this phrase: "... out of death, into life.") She read a paragraph during her sermon, and asked us to repeat what had struck us. I barely more than whispered, "Rising from the grave, destroyed death."
I'd never been to the Monday Eucharist, so I didn't know the rhythm. I had no idea we'd have anointing. She asked me to share the reason I was standing up for it. I said I'd found a tumor three weeks ago that had come back consistent with metastatic melanoma, had just come from the doctor, didn't know any test results yet but he seemed positive, and the best thing for me was a lot of observation.
She cut in with "and a lot of oil," and invited the others to lay hands on me. I don't even remember the words she prayed, other than "be with her every step of her process." (I'm sure she knew as well as I, the double meaning in that.) She took. her. time. I breathed it in, held by many hands, wrapped in the presence of love.
I had taken my sandals off during the sermon, because I had to feel the ground. I think I'll go barefoot in church from now on. The prayer and the taste and the oil... helped me feel my bones again. I was thinking at some point, the only thing I can do now is live in the moment. When you're eating holy food, eat it and rejoice. When you're giving holy food at the river, give it. When you're integrating, do that--but don't try to do it all the time. Life itself is prayer.
If this crash course in uncertainty teaches me anything, it has to teach me that. Bones and skin and breath are sacred. What we do with them is wondrous. I ask for prayer and am flooded with my communities' love. That is where God is.
I got incredibly freakishly lucky, medically--I found this and had it removed before it spread. The blessing is that I've been to the edge twice now. I know I'll go there again; there is no way of predicting how often my body will throw these. I'll never be allowed to forget. It's both harrowing, and something to be unspeakably grateful for.
Afterward, A and I were alone in the transept, also where the columbarium is. The cross on the wall is this huge metal Celtic thing with figures of Jesus and the gospel symbols. I'd seen it before, but never studied it up close. I had to touch it. Traced the figures, ran my fingers down it and back up, around the circle. Put my hands on somebody's niche. My own heart. And back to the cross again. My body was praying; my mind had no words.
Breathe. Rise. I am coming back to life.
Saturday, June 12, 2010
My PET scan is tomorrow. It's feeling like moment-of-truth time.
I remember two years ago, the night before my PET, feeling like I was on an airplane and the gears were engaging beneath me. I was going, I didn't control the speed or the height and there was no getting off. It's different now. I've been worrying myself sick for a week and a half; I know my blogging doesn't really reflect that, but it's true. I'm in a spiritual place of openness, wonder and closeness to reality, at the same time as I want to hold on to this life. Want to be healthy. Want to never have had cancer. And that just isn't going to happen, even if the scan is clean.
The power that I'm held in is love and truth. I also have this human body that I don't know how to trust. I don't know how long I'd have to wait after this recurrence to relax, to get up in the morning and go about my day without looking over my shoulder, or staring too closely at my surgical scars. A friend I haven't seen in over a year greeted me today (at her husband's ordination) with, "Peace on your journey and what the FUCK?!" She was absolutely right about both.
I'm just looking forward to getting some freaking answers. Regardless, almost, of what they are.
If I'm clean, then there are no tumors in me that are large enough to find. If this was a metastasis, will there be more? If this was a new primary, how often will my body throw those? (If there's any way of predicting that, I don't know it.)
Either way, then what do we do? If I'm clean, do we put me on a trial, or watch me and let me feel well? If I'm not, which of the two options (immunotherapy or chemo, both awful) do we try?
And if I'm clean... do I just whiplash back into life? How on earth am I going to do that? One of my mentors gave me a clue today. She came up to me at the ordination reception. She knows what's up with me, and she's been there when I've asked her to be. Today she didn't mention it. She said, "We have extra food. You can take it to the river." She gave me the work she knows is mine. I got to be normal for one afternoon. It was right.
How do you live a coherent life, with a body that feels well even while it randomly threatens to kill you? And I know it's not threatening anything; the disease process is mindless. My body and I are not enemies. I just don't know how to honor or trust it. I talk about wanting to be whole, and I think I have meant being spiritually courageous. I don't know how to be holistic: mind, body, spirit all fully embracing life.
I do think that once I get into tai chi, that will help. Any kind of exercise, really. I need to love this body, even while I'm weirded out by it. Treating it as a hostile alien is exactly the wrong approach.
I skimmed Sister Outsider when I was too young to appreciate it. I remember that Lorde writes about loving her body again after breast cancer. I checked out The Cancer Journals from the San Francisco library, but wasn't in the right frame of mind to read it. Maybe now that would help.
I don't think I know anybody who's had recurrences of their cancers. If you have, I have a question for you. How do you navigate living your life?
Thursday, June 10, 2010
To be alive: not just the carcass
But the spark.
That's crudely put, but ...
If we're not supposed to dance,
Why all this music?
~ Gregory Orr ~
I've been e-mailing with one of my faculty. I've seen her twice in the past year; most recently when I went back for graduation, three weeks ago. She hugged me and said I looked great. When everyone asked how I was that day, I said, "Healthy." We didn't know I had cancer growing inside me.
She sent me a link to this Yahoo group the other day, with the posting I quoted above. Since then, I've been thinking about the illness itself as my teacher.
Of course cancer is all I'm thinking about. But it's oddly less scary the second time. I've lived with an alien before. I know what this means. I can be matter-of-fact about very serious things. A. and I have these kinds of conversations: "If you knew you had five years, what would you want to do?" (Play violin, amongst other things.) "Do you want to work with the homeless because you want to do it, or do you want to grow that beyond when you can do it yourself?" (Good question; I need to have that conversation with Kathleen.) "Oh, and we have to get the advance directive done."
This is life now. We talk about the things that really count. It's oddly comfortable; compelling, really. Not a threatening or fearful thing.
The oncologist could tell me on Monday, "Your scan is clean; we'll just watch you. Come back every four months." I will know that it could reappear anytime, and break loose any one of those times. I have now had melanoma twice.
They gave me interferon to prevent recurrence. Ha. I almost want them to find something, so we have something tangible to fight. Even though I know that the tools just aren't there yet, and I really do want to live longer on this earth than metastatic melanoma would give me.
I'm not afraid of sickness; I'm staring straight at it. I've lived long enough with cancer at my shadow, that dying is merely transformation. I'll feel sad for the people who will miss me, when it's that time. I know that I will be alive, in ways that are unimaginable. The presence of God with me now, shows me that.
Even the loss of control is becoming normal. I sobbed on the phone with Kaiser last week, in pure fear and frustration, and have felt better ever since. My doctors know what they know, and know what they don't. If the way this disease acts in me can help medical science find better tools to fight and prevent it, then sign me up for a trial, please.
The only time I've gotten really creeped out was when an acquaintance told me a story that I know is sacred to her, but which scared holy hell out of me. A relative of hers had melanoma. Someone he knew prayed over him. The X-rays which had been full of spots, then came back clean.
She offered to pray for me. I think I gave her a noncommittal "okay." It took me days to come to terms with why that whole idea makes me uncomfortable. Partly it's that I don't believe in a god who does selective healing or curing. If you can take suffering away, then do it or don't--but only for a few makes no sense. Mostly, though, I don't want the journey taken away from me.
This will sound weird. You may think I'm getting far too friendly with this illness. I'm not fey; I'm in no way courting death. However. I've been waking in the very early morning, whether I take half a Xanax at bedtime or not. It's quiet, before light. The house is asleep. I'll start thinking about everything, and I find myself curled up next to sacred fire.
It's a presence that keeps me warm. It's not really about purifying; I don't feel like things are being burned out of me. Maybe it isn't time now; maybe I'll go through more of that later. I know I did before. I don't ask this presence questions, and it doesn't answer them. We don't converse in words. But it is my teacher and my companion, and I am absolutely assured that I will not be alone.
It isn't God delivering me from illness. It is God with me in the illness, being alive.
I was diagnosed with cancer two years ago, in the seminary community. The dark corners have had candles burning in them, all this time. Cancer taught me to walk through the things I'm afraid of, to let love into the scary places, to be open to experiences that dance on the edge of life. These teachings stay with me. I cherish them. I alternate between feeling frustrated I have to do this again, hopeful that it won't be hideous, and in this wildly open, adventurous place. This is sacred fire that warms me, that lights my path. I know I can go where I need to, spiritually, physically.
And I want to. Don't pray to make it easy. Pray for the presence to be truly whole.
Tuesday, June 08, 2010
I'll have my PET scan next Sunday at 3:15. Meet oncologist-the-next on Monday. We'll go over results, history, treatment, next steps. We'll have an idea of what we're dealing with.
As I've said, if it's just that one site, my choices will be to do nothing but watch, or to take a clinical trial. That will be true whether it's a metastasis or a new primary. If it's gotten, it's been gotten. If there are more.... it means we do more. That will mean either a fresh course of time-buying sickness, or an experiment.
I know if we can't find any more cancer in me, I want to take a trial anyway. I want to throw something at it, even if that something may not work. My first oncologist told me that a PET can miss half a billion cells. That was an abstraction until two days ago. A friend at church who's a breast cancer nurse (and a wonderful, wonderful soul) translated it: four millimeters. Something just slightly smaller than a pencil eraser. My primary tumor, two years ago, was six.
I know that I will never know I'm clean, again.
A. knows it's my decision. She doesn't want me to choose sickness (therapy side effects) again, if the scan doesn't show anything. She said, you've basically lost two years of your life to this already. You write that you want to really be alive. She has a good point... and I don't know where I am with it. I won't know really, until we're presented with clear choices. How sick am I willing to be, without clear benefit? How much time do I want to lose to chemical sickness, when I could be feeling healthy?
I've gotten, again, that life is finite. You can probably safely assume that you'll be here in five years. I can reasonably hope for that, but I can't expect it. Even though I feel well right now, and even if my scan suggests health, I know what might likely be the thing that kills me. It's like living with a chronic progressive illness, while you feel well. I don't know how to live in that space. But I will need to, for my own mental health.
It's a simple question, with global implications. "You know you have now. What do you want to do with it?"
We know how I respond to interferon. That won't even be presented to me again. It's a one-time thing. I took it for a year. Recovery lasted almost as long as the treatment itself. Eleven months to the day after finishing it, I found the tumor that was diagnosed as cancerous.
Insert string of expletives here.
I have so many people praying for me, that I can't keep up with my inbox. Why? Because I asked. I was afraid, and I knew I wanted my community wrapped around me. You all are here. Your presence overwhelms me in all the best of ways. That is healing in itself.
We went to the ordinations in San Francisco on Saturday. I had friends being ordained and I wanted to be there for them. I also knew it would be healing for me. I would see people I hadn't seen for a year. They love me. They know what I'm going through. Their presence would lift me up, hold me close, be enough.
I got all the hugs I needed and wanted. And +Marc did a really amazing thing. He gave me a smile like he knew I knew he got it. Communicated me. And anointed me.
I was not expecting that. Hadn't even thought of it. He had the presence to be in that kairos time with me, and to anoint me for healing. It was a visual exchange of love and courage. A prayer for trust in the presence of God. A cross in holy oil. I felt it soak into my soul.
Curing is physical. Healing is the whole person. I ask my friends to pray--and I know that they pray I be well. Or they write back that they're angry I have to do this again. Or draw me hearts on Facebook. Or tell me to be fierce with the Kaiser system, when I need to. They are connected with me and there for me, in all the ways that they can be. This love heals me.
I stood up in church on Sunday, and said that I'm back on the cancer bus, that the signs look hopeful, and that I'm grateful for life and for community. People clapped for me. It was a bit overwhelming, but it also worked. I could feel them saying, "Go, you can do this." I heard my name on the prayer list. I flinched just recognizing that I needed to be on it, even though I'd asked. I know that people pray I be cured. And honestly, I totally get where they're coming from, and I pray the same way when my friends are hurt or sick. But I still have reservations with the idea of God selecting certain people to be delivered.
What truly heals me, is God and my community being here with me. It helps the most to know I'm not in this alone. It is love that holds me up, that makes the choices in front of me bearable, even life-giving and good. Love makes whole, and makes possibilities possible. I don't believe that there was or is any cosmic reason I've gotten cancer twice. I make meaning out of it, and I learned how to use it for healing. I don't believe that God gave it to me. Why might I believe that God would take it away?
I know people whose illness gave them the faith that mine has given me. They went through it in loving community. They believe in the same loving God. They died. Something gets all of us. While I do want to live, I don't want to be excluded. God has no reason to cure me and not you. I'm not that special.
To be healed is to live your life, whole and free and real. To love and to be loved; to know that love matters more than time. Who we are is more than our bodies. We each matter infinitely to the Love who created us.
My doctors don't know how to cure cancer. I know how to heal the world. Love everyone like you love me when you're afraid you might lose me. Pray that I make the absolute most of the time I have, whether it's two years or five or forty. And pray that every human being does the same.
Cancer teaches me. We are in this world together, for as long as we each are here.
Saturday, June 05, 2010
I was too tired to fill people in last night. My oncologist here (whom A and I call "Dr. GoodGuy" to distinguish him from his colleague Dr. Evil who endangered me) examined me, listened to how I said I was feeling ("hmmm, I'm so vague about my body right now, but I don't think I feel sick"), asked me if the surgeon got it all. He said he thought it would turn out to be just this one site. Ordered a PET to make sure. (I'll call radiology and schedule that Monday, if they don't call me first.) Ordered a blood test. Gave me a scrip for Xanax. Referred me to an oncologist in Sac whom he trusts, both for second opinion/more information and for follow-up care. (Dr. GoodGuy is going on vacation from the 8th until July. His department consists of three doctors--him, Dr. Evil, and one other whom I don't know.) Made a follow-up appointment (or suggested I do that? I don't remember) with himself six weeks from now, in case I still want to discuss things with him or if I need treatment that makes more sense to do here. Told me that if it turns out to have been just this one site, my choices are to do nothing (NOT happening) or to join a clinical trial--and there are lots of those.
He takes for ever, but he listens. And he had no problem going back and explaining something I didn't understand, including how he didn't understand it either. Random bits of what I may be misunderstanding/misremembering: Metastasis in one site is stage IV but acts like stage I. It's way better to have it in one site than in more of them. If we've gotten it, we don't have to do anything right now but there are trials to join if I want to. (Again, I want to.) This could be from my tumor two years ago (bad) or a new mutation (less bad). There's a test to find out. Results of that test don't really make a difference in treatment, if it's only the one site. I can ask all my questions again to Dr. Sacramento, because I'm only understanding in bits.
Basically, if we've gotten it that's really good news, and I can go back to my life.
I won't do normal chemotherapy now; I'll sign up for whichever trial is appropriate. At this stage if there are multiple sites, there is one chemotherapy they use. It's miserable and the results are mostly palliative. There is an immunotherapy that works wonders, Interleukin-2--if you're in the small percentage of people whom it works for. (The interferon I took for a year was also an immunotherapy. I called it chemo because my friends were familiar with that term: something you put into your body that fights cancer and also makes you miserable.) A friend whom I think is an oncology nurse (she works for a hospital system in Sac) sent me a link to this newsletter. I listened to the podcast detailing melanoma treatment strategies. Apparently according to those doctors, the standard of care is a clinical trial. That's where we're at with treatments we can stand on--there aren't any.
Where am I? Guardedly hopeful. The blood test came back normal, which is a really good sign. My consultation in Sac is scheduled for Monday the 14th. I'll have my PET before then, with enough time so that Dr. Sacramento will have the results. I'm kind of waiting to breathe until that's clean.
I got really dire news on Wednesday: a path report came back "consistent with metastatic melanoma." I went immediately into warrior mode: fight for your life; all you know is that everything matters. And then yesterday, a reprieve. A. hadn't really eaten for two days. She was so relieved that she got hungry while Dr. GoodGuy was still talking. I told her, I think I'm more guarded because it's my body. My body clearly makes this crap. We caught this one. There will likely be others in my lifetime. I'm going to always have to make sure I have health insurance. I'm going to always have to be vigilant. But I can stop thinking of life in five-year blocks now; the chances just got higher that I'll be alive at the end of this one.
This is going to sound really weird. I don't want to have metastatic cancer floating around in me, obviously. And no rational soul wants to need chemotherapy. But I almost do want something to show up in my PET--because I want to see my body cooperate with the tools they'd give me to kill it. I feel like, well crap, interferon didn't work. I want to see with my own eyes that something does.
I need to do some physical activity that honors my body. A. and I were talking about Tai Chi. Neither of us knows anything about it. But yoga never stuck with me, and I want to do something just to get rid of the mentality that my body lets these tumors in.
Get back to my life. What does that really mean? It means, do the things I love. Keep the worry about cancer only in the back of my mind: maybe as a simple reminder that life counts, but don't obsess over it. It means, I had a recurrence of the thing that might ultimately, on some unknown date in the future, kill me. Live like I know I've only got now, because that is the truth. I could be blindsided by tumors at any point in time.
It also means, fix the things I think I'm doing wrong. Throw myself in where I've only gotten my toes wet. Face the things in my everyday that scare me--things like finding a way to make a living doing homeless chaplaincy. Organize my time so that I get the projects I want to do, done. I don't know why that is harder, but it is. Maybe that will be easier now, because I've had this reminder that only now exists.
I'm falling back to sleep. I must have come to peace with something.
Friday, June 04, 2010
I don't even know where to start. There's so much clattering around in my head: remembering, broken bits of thoughts. It's not even like I'm in a mood to write. It's that I know if I don't, I'll wrap myself tighter around this anxiety. I'll lose track of my mind, my soul, myself. I need to be grounded. I need to know and to feel that God is holding me. I need to know that my friends can love me through this. I need to stay in touch with who I am. I need to be clear, and wise, and strong.
I am so glad I wrote so much last time. Those words help me now. They help me remember what I learned to hold close. They help me remember that I know I can do this.
"Do this" doesn't mean, "survive." I have no idea yet what is or isn't inside of me. The best possible scenario right now would be to have no more metastases. I won't know until we get the scans done. No, "do this" means come through it, human and whole. Whether we're looking at disease management over time, or something that will kill me quickly. Once melanoma has metastasized, it is very hard to remove. I'll never know I'm clean, again. It will never be like I never had this.
So many medical questions. I have an appointment at 4 today, and I can start asking them. I want to transfer my care to Sacramento for community and resource reasons, even more if we're talking about multiple hospital admissions. My best friend lives here in Stockton (and I with her); the rest of my physical, face-to-face community is in Sac. She and I need them: me because I need all the love I can get; her to take the pressure off of caring for me alone.
I knew that metastasis was statistically possible. After interferon, my chances were 60/40 in my favor. I also knew I had a completely clean sentinel lymph node. How does this happen? Where did the cells go? My doctor examined me all over (physically feeling for swelling) every few months; the last time I saw him was in April. He always focused on the left side of my neck, the likeliest place for trouble. He said I looked great, and to come back in September. I notice a lump below my rib cage in late May, have it removed the next day, and it's cancerous? How?
Last night, I read the final paper I wrote for the homiletics class I was taking when I was diagnosed two years ago. I wrote the paper late, obviously, and turned it in on the Friday before I started interferon. It was a reflection paper covering the whole semester; we could articulate our learning any way we wanted. I am so glad she made me write the damn thing. And that I did what I did with it. My writing then looks so much more fluent than it feels to write now. There is wisdom in those words, that I need to remember.
I need things to mentally chew on. I need to read something, practically anything. I need to ground myself in something other than anxiety over the cancer fight. I need something to relate my experiences to; I need a dialogue.
Or not; if I approach that in the wrong way, it would only be a distraction. I was doing what was academically required of me. That mental/spiritual integration challenge didn't just drop in my lap.
While I read, I remembered. And it occurred to me, "You can be open to this too."
I'm not saying that I am open to it. I'm in full warrior mode. What is this, give me the information, tell me where the tools are so that I can fight it. But I also know that the choice to be open both to fear and to love, healed me in ways that are still working within me.
Yesterday, I completely lost my shit with Kaiser. I was sobbing incoherently over the phone. I finally figured out what I'm afraid of. I'm not scared of sickness, or of dying. What scares me is the loss of control. And that has already begun.
I wish I had an advanced microbiology degree. I wish I understood what was happening inside me and why. I wish I knew that there was a treatment that would unequivocally work, and what that treatment would be.
I don't. I have a liberal arts degree and a Master's in Divinity. The challenge with melanoma is that there is no magic bullet. And so I have to trust my doctors. I have to know that they understand the research which reads like Greek to me. I have to trust them to know what treatments are applicable, what choices to present me with.
I do know that they'll do the best they can. With one exception, each of my oncologists have been smart and wise and kind. What I know from my midnight Googling (plug in "metastatic melanoma" if you want to be scared) is that you can try this, or that, or the other thing; they're all thoroughly unpleasant and they might or might not buy you time. This is an elusive, tricky, insidious illness.
You don't need to tell me that I have to be positive. I know. But I'm all about the information right now. Give me what the research says; let me know what the realities are. Then, I can bring all of myself to the table, so to speak. I can be ready to hear the worst, even as I want to hear the best. Of course I want to live. It's more important to me that I be whole, than that I assume I'll be on the right side of statistics and survive. I can't know that. Until last week (really, two days ago), all the signs told me that I was and would be clean.
All of this, and right now I feel physically well. It's completely surreal, to fight for your life when you don't feel sick.
My oncologist in Oakland--I'm grieving the logistical loss of him--gave me the best advice I've ever had. "Make the choices that make sense to you, and do what makes you happy in your life." I hold on to that now.
Thursday, June 03, 2010
I'm restless and I can't sleep. I'm nervous about the unknown; I'm not really afraid of sickness or of dying. It's... oh shit, here we go again. I know that I can do whatever this asks of me. I'm emotionally healthy and strong, and at least for now I feel physically well. I've done this before and I can do it again, though I won't know until tomorrow (at the earliest) what the protocol might be. I have no clue what my prognosis is. I can do interferon again if I have to--but I don't think that's a repeat choice. I've never been irradiated. The idea of radiation skeeves me, but I'll do it if it's what's in front of me. That's how you get through this: the next thing, and the next thing, and the next.
I know this is very hard to treat. I don't know what the treatment even is. And I know that I will never know I'm clean, again.
I feel like I'm betraying my body, if I don't trust it. But right now I don't know how to trust it. Body wisdom sounds like a lovely idea. My community flooded me with prayers tonight. I trust my people to be there. I trust God, though not for any specific outcome. I know I'm held and grounded in love.
I know I have now. That may be all I ever know.
I've been here before. I learned things that I will forever be grateful for; found strength that will help me through what is to come. But still. Fucking cancer.
Wednesday, June 02, 2010
All I can do right now is copy the e-mail I just sent out:
Some of you know I had a mass removed from my abdominal wall last week. They told me it was a lipoma; harmless something like 99% of the time.
My pathology report came back today, consistent with metastatic melanoma.
That is literally all I know. I expect my oncologist in Oakland to call me tomorrow; I'll do a phone consultation with him. And see the oncologist here (Stockton) who is not the one who tried to kill me two years ago. The very least it means is scans and probably more surgery. I don't even know the protocol, if interferon would be done a second time.
I don't know what it means for my ministries in Sacramento. I know I want to continue doing everything I can. And I know that right now, I feel physically fine.