Monday, February 28, 2011

Starting radiation

I start tomorrow. I’ve been all over the map about doing it.

I probably should have started earlier. My MRI was eleven days ago; it came back the next morning, a Friday. My oncologist was out of town Monday-Wednesday last week. He referred me to a cancer center in Rancho Cordova. They weren’t sure whether he meant them specifically, or if South Sac would do (since I live in Stockton). South Sac called me on Wednesday, and asked if I’d like to be referred to a center in Stockton that contracts with Kaiser. I said sure. St. Teresa’s Cancer Center in Stockton wanted me to come in the next day. I was at the Ranch, and wanted just one more week of normal. Honestly, I was and am tired of cancer intervening in my life. I said Friday would be okay; I had an oncology appointment in the afternoon anyway. They couldn’t fit me in, so I had my consultation with St. Teresa’s this morning.

Meanwhile, I’d been researching whole-brain radiation, and was stark raving terrified. I asked on the ACOR melanoma list about brain mets, radiation, and people’s experiences. Everyone (about eight people) said, don’t do it, but to try getting gamma-knife radiation instead. Their loved ones had lost not only short-term memory, but the ability and desire to communicate. That’s too integral to me. I didn’t want to risk losing myself. I also found some studies online that weren’t very encouraging about the benefits. It may shrink tumors. There are no guarantees. Median survival with untreated melanoma brain mets is one month. With whole-brain radiation, it’s four. I wasn’t completely ready to say no, but I was leaning strongly toward it. If I only had that little time, I wanted to be as intact as myself as I could be.

I couldn’t find peace with that decision, though. I woke up several nights, terrified of seizure, stroke, or brain bleed. (My tumors weren't even causing edema yet, on the MRI. But if the brain mets kill me, that will be how.) Those three days at the Ranch, where I was because I’d asked to help host the Dio NorCal clergy conference before I knew about my brain, were the most surreal days of my entire life. I was with my own clergy, friends and acquaintances, and total strangers. A friend and I had a couple sessions of just holding each other in the chapel. (She made me a tree of life pendant; she said I needed an oak tree. I wear it all the time now.) People I didn’t know would ask how I was, and I’d say, “Fine.” I was so emotionally elsewhere, that there was no one way to be. Melanoma brain mets basically are a death sentence. I don’t know of any long-term survivors. The treatment scared me more than the natural process of the disease. I went for hikes, and tried to imprint the feel of damp earth under my shoes. I’m sure I walked around hollow-eyed most of the time. Grief didn’t really hit me until I talked to the radiation oncologist who’s going to be treating me, over the phone. He told me I was ineligible for gamma-knife treatment (more precise, slightly longer life expectancy, less side effects) because I have too many metastases. I got off the phone and just started crying. I’ve never felt so profoundly sad. If I treat this, I risk cognitive and personality changes (or so I’d believed from the research I’d done). If I don’t, I’m choosing to die. I wanted to take control where I could. I preferred to go consciously, though probably quickly.  But the actual possibility opened up raw grief.

It hit me again when I said goodbye to the staff, which I never make a point of doing. I wasn’t actually leaving for another couple of hours. One of them said, come back by on your way out. I looked at her and said, “Now is now.” I heard myself say that. And I had to leave the office before I started sobbing.

I went to CDSP for Community Night on Thursday, because I’d previously planned to (when cancer wasn’t immediately fatal and I’d wanted to see my friends), and because I was going home from Healdsburg via Berkeley, so was staying the night with a friend in Livermore. I second-guessed myself for being there, all during Eucharist. I’d just said way too many goodbyes at the Ranch. I was raw, and exhausted. But then I got to have dinner with my advisor, who asked me self-conscious questions (which were absolutely fine) and was her usual loving self. I was really glad to have time with her.

Unbeknownst to me, my wallet fell out of my pocket on the sidewalk in front of La Val’s. I was oblivious until the next morning when A called me, couldn’t reach me because I ignored my cell when it rang, and then called the friend I was with. The person who found it (ID and credit cards still inside) spoke Spanish as his first language. I understand a little, but speak next to none. I was nervous about the way he, another friend of mine, and I were trying to coordinate getting it back to me. And then I left my aircard at my friend’s house. She could have mailed it, and I’d have been fine with that, but I was rattled without my wallet.  (I had a meltdown that night, triggered by my displaced wallet but really about the time bombs in my head.  I wanted something not to be broken.)

A and I went together to my oncologist appointment on Friday. He played down the cognitive risks I’d been afraid of. I was still struggling. “Is it really life, if I’m not intact as me? Can I give this a chance? Do I want more time, whatever it costs me?” I wasn’t at peace in either direction.

We took Saturday to retrieve the bits of me that I’d left all over creation, and to go play in the city. We had sushi for lunch in Berkeley, then went to the Exploratorium because I’d always wanted to. We played with experiments for about an hour, until we’d both had enough of crowds. We’d talked about going to Muir Woods after, or maybe just going to the coast the next day and visiting the redwoods there. I realized that what I really wanted to do was walk on the Golden Gate Bridge. I’d never done it, because I have a weird mix of fear of heights and desire to fly. I’d wanted to walk there, but only if I had somebody with me. I didn’t know that A hadn’t done it either. We got there right around 4. It was cold and windy, but clear, and still full daylight. The city does gorgeous so incredibly well. We stopped here and there and took pictures of each other, playing but also (at least I was) proactively remembering. The views from up there were so beautiful it hurt. I don’t even think we talked that much; we were mostly quiet, taking everything in. Praying was as easy as noticing the light. I was glowing, and I knew it. I hadn’t been that happy in a long, long time.

We walked to the tower at the Marin end, and walked back as the sun was setting. The lights on the bridge came on. The hills glowed green-purple and the sky was pink. The city was sparkling, windows reflecting sky. We both were entranced by the beauty of everything.

It was the most perfect “now,” that I have ever had.

Yesterday morning, we went to church in Fremont (just over an hour away) because the same friend I’d just stayed with was preaching and presiding there. We both love the way she does church. We love her. And I wanted to experience that again, while I’m alive and neurologically intact.

We ended up sitting with friends of hers, whom we didn’t know. The four of us cracked up together. Throughout the service, I wasn’t trying to remember or hold onto anything. I got to just enjoy being there. Then she gave me communion. I went back to my seat, and tasted the bread and wine in my mouth. I caught myself wondering, "What will communion be on the other side?"  This friend is also priest to me; she's walked with me through formation wherever it seemed to be going, and she will midwife my death.  I realized, “She’ll communicate me again. But it probably won’t be inside a church building.”

We talked for a little while after. She said she’d be back on 3 Lent. I did the mental math. And I knew, if I wanted to be there I’d have to go through with whole-brain radiation.

It clicked. The seesaw tipped. I had something concrete to hope for. I know what will happen if I don’t do it. I know what might happen if I do. And I’d rather raise my head, than be stark raving terrified. I’d rather believe that life can happen. I found out that I still can.

I love this world, and I don’t want to leave yet. I just want a little more time. I want some more amazing days.  This is what I have to do, to have a chance at that.

A and I went to the coast after church; Seacliff is only an hour or so from there. We walked in the water. And we talked about hope. About ministry, and how she sees me doing my priesthood now. About the community that’s gathered around this blog, around me. My wet, sandy feet remembered my baptism. My heart remembered what it’s like to feel called, and to be up for the challenge of doing well what you’re called to do. I felt better than I have in weeks. I felt like I could hope again.

I have felt a calling to homeless ministry. If I were healthy, I still would be seeking ordination to take the sacraments to the street. (I haven’t finally given up on that; I can’t focus on it now, though.) I love being with them, and they know it. I’m good at it. Easy in my skin. Comfortable. But the work that’s truly, completely mine is embodied in these words you’re reading. This writing is as natural as breathing. I never felt called in the same sense to being transparent in this space, but I do it and I know that God is here. I started almost three years ago, in absolute panic, reaching out for a community not to it. Now I know you. I know you are here. People tell me I give them hope. You should know that your love sustains me.

We went for my radiation consultation this morning. The staff there are all wonderful. They honor your humanity in all kinds of little ways.  I asked specifically about the cognitive side effects I’m afraid of. The radiation oncologist made it sound like that’s disease progression, not caused by radiation. I know that I can mentally get through 15 treatments. (My last is scheduled for 3/21.) I don’t know that my body can. And the only way I’ll know it worked, is if I don’t develop more neuro symptoms.

I can ask for a post-radiation MRI to see if I’m eligible for clinical trials. I’ll have to gear up for hearing, yes it worked or no it didn’t. Maybe in three weeks I’ll be ready for that. I can work up the courage. Right now, I quake just thinking about it.

But last week, I wasn’t ready for what I’m doing tomorrow. Today I place my physical hope in it. This is the only treatment that may help my head. If it keeps the brain mets at bay, we look for something that will clear my lungs.

What sounded last week like too many hope gymnastics, just might work. I’d rather think of it as just within reach, than just outside of it. Much healthier mentally, to keep counting yourself in.

I need to be prayed over, around, with. All along, I’ve asked for wholeness. Clear eyes, as long as I can see. I’m so resistant to praying for a cure. I don’t want to believe in a capricious God. But I love this world, and I don’t want to leave. I really want radiation to work. My body doesn’t have more chances, if it doesn’t.

Just enough hope to get through one day at a time. Yes. But also, a point to the suffering. A reprieve. Life on this earth, that is actual life and not mere breathing. For as long as I can have it.  That ends in quiet, me peaceful and ready, with the people I want around me.  Not neurological catastrophes that rob me of one vital sense at a time, frightened and grieving.  Not a massive seizure, sudden and violent.

Pray with me. Pray for me, in whatever ways make sense to you.

Tuesday, February 22, 2011

Thank you

I woke up too early, tried to pray and couldn’t. So I wrote a thank-you letter instead:

I can’t possibly respond to everyone individually, even though I want to. Your e-mails, blog comments and Facebook posts have blown me completely away. Your love, grace, and perceptions amaze me. All I can possibly say is thank you. To each of you, to all of you, to everyone.

I asked you to tell me what I mean to you. You did. You tell me I am a light to you. You are and have been lights to me. And those who haven’t answered that specific request—I can feel your love, sense your prayers. I know how many arms embrace me; how many hands hold me up. And I know I couldn’t count them. I treasure my relationships with all of you.

You who receive me as family, thank you. Teachers and friends who challenged, nurtured, loved and supported me through seminary, thank you. You who keep me aware that New Orleans still loves me, thank you. All of you who saw the light in me before I could bring myself to believe there could be one, thank you. Thank you Trinity, for embracing and supporting me. All of you who have made the Ranch another welcoming home: staff and families, friends I have met there, thank you. Online friends whom I’ve never met in the flesh, but know through love, shared witness and time, thank you. Friends of Andee’s who love and pray for me, thank you. You who have given me gifts along the cancer road: love, hope, a rock, a circle of saints, hospital visits, your presence, prayers, and time, thank you. You who hosted, fed, and loved me on my walkabout in SoCal and Arizona: thank you, I love you, and I’m so glad I had that time with you. (Olympians, I still hope I can see you, and I love you so very much.) You who wrap me in love no matter what I’ve done, laugh with me and challenge me, stay with me in the rock tumbler and point my eyes to the love and consolation of God, thank you and I love you forever.

Thank you all for the gifts you freely and lovingly give. I’m so glad I share the planet with you. Gratitude for you keeps me connected to God. I go in and out of that connection, but I need it more than breath. Thank you for showing me so much love.

I know my prognosis in academic, statistical terms, thanks I suppose to journal articles I found while searching for melanoma brain mets and radiation. I’ll talk to my oncologist on Friday. I needed to make sure I said this, and I don’t know how long I’ll have the ability to. Thank you. Thank you. Thank you.

Love always,

Saturday, February 19, 2011

Who am I?

People keep telling me, I am me and I will be. But who will I be, when two of the many possible side effects of brain radiation are speech and memory problems? How will I remember who I am? How will I keep from feeling rudderless, if I can't be who I've always been?

This is one thing I'm afraid of:  not being able to be myself.  Feeling sad and grieving and frustrated because I can't access the person I've always been, or the person I've worked hard to be.  Missing what I had, and won't have the ability to have again.  Not having the energy, memory, or resources to respond to the world the way I do now.

Put it in print, so I'll remember.  Tell me stories.  Tell me why you come here.  Tell me what connects you to me.  Tell me what you want me to take with me.  Tell me who I am, to you.

Friday, February 18, 2011

Game changes

I’ve been on e-mail and Facebook all day, soaking in the love-fest again. My friends amaze me. I wish you were close enough to hold me; I’m needing that right now. But your presence, even over e-mail, is huge. Thank you.

I’ve suspected the cancer was gaining on me. My palpable tumors (soft-tissue nodules right under my skin) are growing. I’ve had a cough that could be anything, or it could be cancer. Three times in the past two weeks or so, my lips went numb and then my left arm and leg. It washed through me and was over in a few seconds—but I reported it as a possible symptom, and that’s what led to the MRI. My doctor called this morning with the news. (My PET results are back, or should be, but he didn’t have them in front of him when he called.)

I have feared brain mets most. I don’t want to lose control. I don’t want to not be me. I was suspecting the cough, but still don’t have the data to confirm it. Clinical evidence of brain mets makes this all so very real. I knew biochemo wouldn’t prevent them; it doesn’t work in the brain. I don’t know if those five rounds of awfulness bought me time. They did buy me hope. And now... I’m just tired, scared, sad. I don’t have the reflectiveness I had last summer. If I take a walk on a windy day, I’m not going to be thinking, “This breeze will carry my memory.” I’m going to be soaking up the feeling of air brushing my skin, for all I’m worth. I don’t know how much longer I’ll be free to walk outside.

It really does feel like I’ve just shifted into end-game. I know brain mets can be affected by radiation. I don’t have any real hope that this will buy me significant time. I know, because I can touch them (and one of them hurts), that the tumors are growing. There are promising experimental trials, but the brain mets have to be dealt with first. There’s nothing proven to work against melanoma, across populations. (This or that may work against this or that genetic mutation. This other has some effect according to these studies; none according to those. This, that, and the other extend life by an average of seven months.) I want to be me, and I want to be whole, and I want to be strong. I’m not ready to give up. But I’m scared.

I’m afraid of the brain mets, and of the treatment for them. I can do chemo; I’ve done it. I’ve never had radiation.  I want it to work.  And I'm afraid of the effects on the rest of me, when I do it.

I knew this could come, was coming. I don’t want it now. I’m not ready. There are still things I want to do. Even to say that there’s no telling whether I can, feels too hopeful. I’m symptomatic. When I wasn’t sick from the cancer itself, but from the treatment, I wasn’t in denial but I could put death in the abstract. I can’t anymore.

I’m not the feisty warrior I was last summer. I’m just doing what I have to do. I just want to be me as long as I can. I really got today, that I don’t control time.

Pray for me, pray with me.

Brain mets. Fuuuuuuuuuck.

I had an MRI last night.  Oncologist called me this morning.

They're small, and not causing edema or shifting of brain contents.  But, I have them.  They may be responsible for the transitory numbness I've had.

The next step is a radiation oncologist, probably next week.  I asked my oncologist how effective that would be.  He said it would shrink them, or make them stop growing, or make them go away.  There's no telling whether they'd come back.

I'll be more reflective later.  Had to get this out there.

UPDATE:  Here's the e-mail I sent out:

Brain mets. !#$+&^$$#+*%!!!

I had an MRI yesterday. I was told I wouldn't even get the results until Wednesday or so. My doctor called me this morning with the news. They're small, and not causing edema or shifting of brain contents. They may be responsible for some transitory numbness I've had (which was the reason he ordered the test). The next step is a radiation oncologist, probably next week. They'll call me to set that up.

I asked my oncologist how effective radiation would be. He said it would either shrink them, or make them stop growing, or make them go away. So there is hope in that. There's no telling whether they'll grow back.

Had a PET scan last Sunday; I've been suspecting worse lung involvement because I've had a cough for more than a month and my palpable tumors are growing. He didn't have that in front of him. Brain mets take precedence over everything else.

Trying to get in to UCD to be seen. My (Kaiser) doctor isn't opposed to that, but he said that brain mets rule me out of most experimental protocols.

Just got off the phone with Andee. This changes the game in one other dimension. If you are local, we may need you to drive me to radiation. I'll see if I can get anything closer than Rancho Cordova. I don't know how often this will be. If you can be called on for that, please say so.

Pray for wholeness; pray for strength; pray for access to effective treatment.