So much better

So. much. better.

It’s quarter to three in the morning, and I’m awake. I think my Ativan has worn off. The central line doesn’t hurt as much as it did when I went to bed. I’m feeling so much more peaceful. And I feel like it’s going to be okay.

If I can find a tactful way to do it, I’m going to offer to re-write the packet Robin sent me. It’s written as if being here at all is contingent on one treatment working in the first two tries. That isn’t so.

We had a three-hour consultation yesterday. First one of the nurses, then Dr. Gailani, then the pharmacist and then the social worker. Dr. Gailani gave us better odds—still not great, but better. And explained to us how it really works: they’re starting me on biochemotherapy (interleukin, interferon, three chemo drugs that I remember). I’ll do that now and after the second week home, I’ll do it again. Three weeks after that, I’ll have a PET to see if my body is responding. If it is, we keep at it, every fourth week. If not, we go to high-dose IL-2. I’ll try that twice (same schedule). If that works, we keep at it. If that doesn’t work either, we start me on trials.

The odds aren’t great for anything—but they’re better than the information we had. And there is always something else in the toolbox.

Dr. G was great. He asked what I know about metastatic melanoma. I said, I’m sure you could tell me something I don’t know. He was sure he could (the man is famous in this field), but started at the beginning, and gave me whatever information I could assimilate. He told me where the disease is in me: lungs, lymph nodes between the lungs, muscle in that area (which likely explains the chest pains I’ve been having; they don’t feel cardiac). Bones, and subcutaneous tissue. We’re going to do an MRI to rule out brain mets—but I don’t have any symptoms of those.

He said if we could put me in full remission, great—if we keep me as asymptomatic as possible, that’s success too. Median survival rates don’t relate to individuals. We don’t know where I’ll be, until we pull out the toolbox and see what works on me.

We’re looking at anywhere between 6 months and a year and a half of treatment. Which means, there are options until there won’t be anymore. He will tell us when and if it’s time to stop and let me live fully whatever time I still have.

I’m getting tired and want more rest. I’ll write later about the amazing people of St. George’s.

Anxious

It’s not that I’m nervous—it’s that my nerves have been shot for the past month. I am SO ready to get this over with.

What really did me in: I was going through the packet that Kaiser sent me yesterday, looking for the packing list to make sure I didn’t forget anything. I came across the treatment protocol, and I read it again.

I had thought I’d be one week on, two weeks off, one week on, three weeks off, and one week on again before my PET scan. No. I’ll have the PET after those three weeks, and readmission is contingent on the results. (I must have misunderstood her over the phone.)

It feels like my body now has two chances to get it right—not three. I know that isn’t rational. We can tell them I feel like I’ve been sprouting tumors like weeds, and my last PET was... just about three weeks ago. (Dang. Feels like forever.) They’ll have their ways of measuring. This will be enough to tell them whether or not my body responds. Or it won’t, and they can take my new weed garden into account. These people understand this stuff better than I do.

It isn’t a performance test. I can’t pressure my body into complying—and I wouldn’t want to treat my body that way, anyway. It’s just that I didn’t realize until I came across that paper, how desperately I want this to work.

I can tell you that I have no idea how I’d emotionally reconcile being given my life back. How do you re-enter the world, after this? But I know that I could, given the support I already have, and time. And I damn well want to.

I can want it more than I’ve ever wanted anything—and I can’t control whether it happens. I can’t dictate my body’s response. Either this treatment will work, or it will work partially, or it won’t work at all. It isn’t my body’s fault, if it doesn’t.

I need to step back, relax as much as I can, and love my body through this. And I want to. I’m not angry with it anymore. My body has been besieged, I know that, and I’m about to besiege it more by making it sick in the name of reovering health. My poor cells won’t know what hit them. And it isn’t their fault.

I’ve never been plagued by a health problem that impeded me, before I first met cancer two years ago. I have a little bit of asthma, but it mostly acts up if I’m sick or have been around smoke. I know how to take care of it. (I was fine three days after last Easter Vigil.) I don’t think about my body, when I’m well. I’ve never been in the least bit athletic—but my body has always been able to do what I’ve asked it to do. There is nowhere I can’t go, on my own two legs.

IL-2 is really the best thing out there for melanoma at the stage I have it, when it works. It works very well, for rare and lucky people. So either this will work, and I’ll go back to the life I had, or it won’t—and I’ll never be really well again.

I feel well now, except for odd pains that are mostly ignorable, and are either cancer or stress most likely. I don’t want to get sick. I don’t want to hurt more, in more places. I don’t want to watch myself lose my physical and mental abilities. I don’t want to die.

These are all very likely possibilities. And I can’t wrap my head around them. I am so alive now—I can’t imagine dying. Even when I was sick for a year on interferon (longer, counting recovery time), there was a me that wanted to get out from inside the shell of headaches and bone-weary fatigue. I was sick, exhausted, miserable—and I was alive. I could walk around the Tenderloin at 1 a.m., hanging out in drag bars with my field ed supervisor. I could enjoy the activities I was involved in. I could laugh with my friends.

Until the past two years, I had always felt well. I don’t want to never be well again. If this doesn’t work, there are other drugs that may shrink tumors—but that don’t increase life expectancy. (I have no idea how that works.) There is nothing else that eradicates the disease. If this doesn’t work, the next step will be a clinical trial. Results of that would benefit people coming after me. That’s well and good; I have no problem with doing something for the good of others. But I am just not done. I still want to be alive.

And I can’t control what happens.

I can find a space within this. I know I will find peace. I have to. I’ve been committed from the beginning, to going where this takes me. But I had about six months, when I was recovered enough from treatment to feel like myself, and I could think I was done with cancer. All that time, these tumors were growing inside me undetected.

I don’t know how I feel. There is no conscious betrayal. My melanocytes went crazy because evolution hasn’t told them properly how to turn off reproduction. Sometimes they don’t shut off; mine didn’t. There is no intent in that. My body never meant or wanted to be taken over. It didn’t collude in its own destruction. Cancer just happens.

I have nothing to get angry at. And love will heal—but it does not cure. Here I just am, until something destroys the disease or it does not.

I am used to the circumstances of my life being dictated by my choices. I have made all the right choices, in this—even before I knew it, when my enrollment in grad school meant I had to carry health insurance (therefore I had the chance to). I wore hats before I was diagnosed, and sunblock in the summer—not every day of the world, as now, but with the level of consciousness I had.

I’ve done everything right. And I still got sick. I can’t blame myself, because I haven’t done anything wrong. I can’t be angry with my body, because bodies are hard-wired for health, and it did the best it possibly could. I can’t be angry with the disease, because it was no more than an evolutionary process that got out of control.

There is no intent anywhere. And I am losing control for ever. That’s what is really hard.

I’ve been sick from cancer treatment before. I know I can do it again, as long as my body can physically tolerate it. I don’t like it, but that’s not why I’m anxious. I am anxious because so much is being taken—and I may not ever get it back.

I’ll have a blood draw this morning, and consultation with the doctor. They’ll admit me later when there’s a bed free. Tomorrow morning, treatment starts.

I’ll give the nurse my arm; she’ll find a vein and start the IV—and there will be no getting off this bus, ever again. Six percent of people get to have a full remission. I don’t dare to really hope I’ll be in that group. (Margaret, I remember your note. Thank you.) I will never not be looking over my shoulder—literally, as there’s a palpable tumor on the right one—ever again. This is not the life I chose. But it is mine.

And I have to find a way to really live, this life that I have now.

In Riverside

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.

Beginning to land

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?

Communication snag

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.

More thoughts on resurrection

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.

Where my mind goes

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.

Canticle of the Sun

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.)

Surreality

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.”

Back from the ocean

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.

Threads

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.

This description would not fit me.

"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.

Feeling it

Oh, am I ever.  I couldn't, and now I can't stop.

Too tired/sad/frustrated/exhausted/touched out/talked out to write much about it now.  Soon.

Not feeling it yet

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.

and here's the e-mail I just sent out...

Dear all,

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.