Meeting Jesus

Right now, all is calm on the disease front. I have a PET scan on the 12th, that I’m not anxious about. I’m recovering more quickly from chemo than I ever have. I’m free to think about other things.

A and I went to St. Bart’s again on Sunday. I wanted another Carol fix before she retires this weekend. I also wanted to thank the community for being the support that they are. I’m almost never there—but I know that they care about me. And I wasn’t up for driving yet, so both of us went.

I got an absolute love-bath. I stood up and said, I'm not here that often so I don't know what people remember, but I'm fighting cancer for the second time. Someone I don't know asked if they could lay hands on me. I said of course yes. So a bunch of people came up and did just that. Then A said my birthday's coming (two weeks away). Which was close enough to Carol's, that she prayed for both of us.

And I mean prayed. Cancer can’t hold a candle to that. I felt completely, utterly blessed.

A and I talked on the way home about what makes Carol different. We finally figured it out: she meets Jesus in people. We’re close now; we adore each other, and both of us know it. But she greeted me as warmly when I would have thought I was no more to her than the friend of an occasional visitor. You can watch her see Christ in you. The effect is that you know you matter. And I know I’m not the only human being, still taken by surprise at that idea.

People reflect God to me all the time. A friend once told me I “embodied welcome.” So I know I have a similar effect. But I have no clue what I do. In some ways that’s good; I don’t want to lose my head to it. But then, how do you practice a skill you don’t know you have? How do you get better at it, if you don’t know it exists?

I’m in a race with the disease. I know that if I win, I will be clergy. I’m more sure of that than I’ve ever been. I’m barely practicing the ministry right now that I got my bishop's permission to explore. But I know it is in me, and so does everyone who sees me do it. I know that people value this blog as a cancer ministry. It is, and that’s one reason I keep it. But I’m on a trajectory toward being a priest to homeless people. That’s what my heart wants more than anything. And that’s where I know I’ll end up, if I live long enough.

(Here’s where the magical thinking starts: that is so me that I have to do it. Therefore, I will. I will beat this, and I’ll live. I can’t let myself go there. But God knows I want to.)

Everyone needs to know that they matter. Seeing my effect on others as I was beginning to deal with cancer is one of the things that healed me. We all need to be seen. We all need love.

My people are those who get told a thousand times a day that they are nothing. They need welcome more than anyone else I know. They need to be told and shown that they count. They need to know that they matter to God, and to the people around them.

I don’t know what I’m already doing. It isn’t intentional. But I know I can do what I have seen and felt Carol do. I can purposely greet Jesus in everyone I see.

It needs to be conscious, until it is natural. And maybe even then. What would the world be like, if we all consciously greeted God in each other?

Update in the middle of chemo round #3

If laughter could cure...Kirstin would be home now. She says that she's never been this calm during a treatment round, and that while chemo is awful, this is completely endurable.

The oncologist decided to keep her on same regimen, but do another PET scan a few weeks after this round (instead of waiting until after the 4th round), to get a better baseline for how fast the tumors are growing. They have grown - but not very much (2 mm was what I was told) - and not nearly enough for him to be worried. This is apparently not uncommon for this stage of treatment. Which is very reassuring.

And her companion for this treatment round, M-E, turns out to be a God-send. Not only is she wise, compassionate and comforting (which we knew ahead of time), but she also turns out to have a wickedly delightful sense of humor, and a previously unimagined ability to turn the worst vagaries of hospital life into hilarious song. As I said, if laughter could cure...

To all of you who care, and love, and pray...thank you, and thank you, and thank you.

Andee

Going quiet for about ten days

Again, this is for people who aren't on my e-list.  Thank you all for your presence and your prayers.

Dear all,

I fly down to Riverside tomorrow, and am scheduled to be admitted to Kaiser from Friday until the 25th. The calendar could change, with a possible change in regimens. I'll find out Friday morning if we're switching me to high-dose IL-2, and if there's a bed for me that day. (Sometimes you have to wait longer for ICU admission.) I'll find out when I start taking the treatment, whether I can tolerate it.

I know I can get through a cycle of biochemotherapy. But as you already know, there are questions about whether it's working for me. My doctor wants to discuss switching me up.

I know this about myself, regarding communication: I don't write while I'm having chemo. I'm too drugged and sick to even want to. And for the first few days I'm home, looking at the screen makes me more nauseous than I am. You are all welcome (encouraged! please!) to write to me--but I will reply in my heart before I do it with my words. And tomorrow is really going to be about having face time with the friend I'm going with and St. George's, soaking in life and love and everything that grounds me. I may not get to blogging or e-mail. (If I'm in the ICU starting Friday, I don't know what access I'll have.)

Keep storming heaven for me. Keep letting me know it. Know that your love helps carry me.

love,
Kirstin

Inventory, or how I really am

Body
I have tumors in my chest wall that I’m sure are causing the pain there. It feels like I’m wearing a seatbelt, the way the pressure catches the right side. My left lung feels clear and fine. There could be any number of reasons why I’m coughing; I have tumors in my lungs (primarily right), and I live in California where everything grows.

I have a pain in the right side of my abdomen, not far from where the tumor was that re-ignited all of this. I know from reading my orders, which muscle is affected. There’s also soreness along the right side of my groin (possibly lymph nodes?), and a tumor on my right hip that sprouted the morning after I was discharged last time.

The tumor on one of my left ribs is still there. I’ve lost enough weight that it only slightly affects the way my bra fits me, so I think about it less.

I think I carry too much tension in my jaw; it’s been creaking and cracking.

The neuropathy in my hands and feet is slight just now; I have to consciously remember to take the meds they gave me for it. They tingle a bit; it’s like when you first notice that all of your extremities are asleep at once.

As of this morning in the shower, my hair is beginning to fall out. It could thin so slightly that no one notices. I could go completely bald. I’ll likely fall somewhere in the middle. Much of that depends on my treatment regimen; the chemo drugs are more suspect than immunotherapy alone.  (Though my hair thinned on interferon; everyone thought it looked better.)  I'm totally fine with the idea of looking the part.

I can’t stay asleep at night to save my neck. Sometimes I wake up anxious; sometimes grateful, sometimes I just wake up. And I stay awake for hours. So I’m tired all day, even if I nap.

And yet, I can still hike all over the Ranch. I’m here right now, preparing myself for the next round. I can't eat like a three-year-old here; I have to eat regular food. For the first couple days, I spent a lot of time under the plum tree. (I’ll eat fruit when I won’t touch anything else.) Now, I can eat almost normally. I just can't eat spicy foods.

Soul
I can have normal conversations—or what passes for normal when you know you hold death in one hand and life in the other. I can relax with my friends. LKT drove up today to visit me. We had a great time. There’s nothing normal about either the process or cancer. We talked exhaustively about both, and we laughed.

I researched clinical trials yesterday, for about half an hour.  It did not creep me out.

I went for a hike last night, on a trail I know very well in the daytime. I had just talked on the phone with the friend who’s going to Riverside with me next week. I watched the stars and the sliver moon, and I thought about how safe I feel even though I’m apprehensive about side effects and whether the whole thing is working.

Most of my fear is leftover trauma from the first round. I know what to expect from biochemo now. If my doctor switches me to IL-2, my team will orient me as well as they can. They give me enough of the sedative now. I won’t get the nausea drug I reacted to so badly. I’m learning what my emotional needs are, and I can articulate them. I’ll be with someone I totally trust, haven’t seen in a year, and really want to have time with. She makes a point of telling me already, that it will be okay when the drugs don’t let me access myself. I have a community of friends there, who take the edge off the yuck of it all. I’ll be wrapped in love.

As I walked on the trail in the dark, I noticed that my flashlight was dimming. The next step I took, my feet felt the earth. I am still grounded. I am safe in me. I will be safe everywhere I go. 

I met someone tonight, who is here with a group on retreat. She introduced herself, and asked if I work here. I did what I usually do with strangers: told her that I used to work here off-and-on; now I have medical issues so I’m up here just being. (I do still function sometimes as staff; I’ll be hosting tomorrow. I need to give back while I can.) Something in her reply made me tell her the truth. I said that I have to go to Riverside next week for chemo, and I’m here preparing. I explained that Kaiser sends everybody with kidney cancer or metastatic melanoma, which is what I have, to the specialist there.

She told me that she’s had three different cancers. She’s uninsurable now. She finished her last chemotherapy five years ago. Without thinking, I raised my fists, and looked strength into her eyes. She wished me well, and hugged me. As I walked away, I realized that we’d given each other solidarity. That happens all the time. And I’d given the same strength I willed her, to myself.

As for entering the process while I’m dealing with cancer: I have a mental image of a tightrope, but I’m not falling off. It’s not fraught with any actual danger. I won’t lose my balance. This is where I walk now. The message I got on Thursday carries me:

You could die. Affirm your life.

I have cancer. I am human. I am me. I will be me, as long as I have breath.

Alive

Thursday morning, I got the e-mail telling me that we’re not sure the treatment is working.

Thursday afternoon, my priest and I met with the bishop, and I got the go-ahead to start the Process (tm) here.

Episcopalians know what that means. It’s code for "discernment"; it's the first step toward ordination. All I want to do is take the sacraments to the river. I choose to seek the church’s blessing, and I just may get it.

You take your Yeses as they come.

My bishop knew from Facebook that I’m in chemo. Of course he asked about my health. I wondered if it might be an impediment. It wasn’t. He was compassionate, not paternalistic. The feeling I got was, if I’m willing to risk jumping into the process, with the understanding of time that I have, he’s willing to support me.

I’ve written this post in my head a hundred times. I’m still not at terms with what I’m feeling. I don’t know how to describe the space between medical worry and affirmation of call. Joy, relief, sadness, and a fierce, fierce hope.

I’ve known for two and a half years that all I really know I have is now. I am still fully alive, and fully called into life. You embrace life as long and as well as you can.

Treatment update-unclear news

This is for everyone who's not on my e-list.

Hi all,

I just got an e-mail from the program director in Riverside. Here is what she said:

Your PET scan is back and Dr G will talk to you on Aug 20 about it, he said he may continue on Biochemo but may also change to high dose, but wants to have a conversation with you.

I called her back and she clarified: there are some increases in tumor activity, but the amount is questionable. This means two things: we're not really clear about whether the treatment is working, and I have a week to not know whether I have a whole new regimen (high-dose Interleukin-2, with its own set of side effects) to get used to.

How am I? Short of panicky. Oddly, both worried and trusting. Preparing; I can feel myself gearing up, both for change and for news I don't want.

Pray, of course. Be here. Love me in whatever ways you think of; I need that right now.

Kirstin

The gift in the illness

is waking up to love.

A whole lot of stories go into that--but it really is that simple.

Thank you to all who are here for me, loving me through this.  And thank God, for the grace to see.

Gifts

I’ve awakened in the middle of the night, consistently for the past nine weeks. My body has gotten into that habit. In the past two nights, I’ve gone from waking up anxious to waking up grateful. I am finally able to absorb all the gifts I'm being given. Not to be overwhelmed by them—but to wake up saying thank you.

What has changed? What has shifted, which has freed me so? Perspective. I still don’t know whether the treatment is working. I don’t know what I’ll be in for the next time I go south. I don’t know whether I will survive on this earth.

But I rejoice in all these many gifts:

Someone I treasure, but see too rarely, told me what I mean to her. I mean really told me. She wrote me a note that I’ll never forget. She’s always been on my back-pocket list; “these are good people.” Our paths don’t cross often. I had no idea that she loves me as much as she does, or that she pays such close attention. People, do this for each other. You don’t know the gift you’re giving, until you receive it.

I got a visit from a high school friend, about a week ago. We’re in touch on Facebook, but hadn’t seen each other since 1988. We’re both going through big things: mine medical, hers other. We were able to really be there for each other, and to laugh a lot too.

I had this conversation with my priest on Sunday, so gloriously normal:

“Goodness gracious! You don’t look like everything you’re going through.”
“Thanks, right now I don’t feel like it either.”
“We’re meeting with the bishop on Thursday, right?”
“Yes. At 2?”
[punches Blackberry] “Yes. Let me show you the tattoo I want.”

There is a fundraiser happening for me on the 21st, put on by Safe Ground, hosted by Trinity. As it happens, I can’t go because I’ll be in Riverside. I’ve been out of the scene for two months, and I’ve hardly ever been at church since I started chemo. But Safe Ground values me enough to have proposed this. Trinity’s happy to host it.

Said fundraiser was announced on Sunday. I got up at thanksgivings time and said, “These flyers are about me. Thank you for doing this.” A was with me, so she could drive me to my PET scan afterward. A visitor came up to us as we were getting ready to leave. I’d never seen him. He told us his best friend’s story with cancer (note that I was sitting with mine). He encouraged me that his friend successfully fought it, and I could too. Then he handed me $100.

A Facebook acquaintance messaged me this morning, to thank me for the way I go about this. She has her own health problems, and the way I’m public about my struggle and my faith helps her. Again, it is so good to be truly seen. And to know that what I’m doing, as much as I feel like I’m muddling most of the time, helps another.

A sister survivor gave me a gift: well, two really. One was a surprise hospital visit; I was expecting her later. We talked, and she gave me a bracelet. It’s a circle of saints, given to her by women who had been through harder challenges than chemotherapy. They inspire her, and apparently so do I.

I put it on immediately and wore it all week, but I couldn’t wear it at home. I tried, and freaked out. It reminded me too much of the hospital. A week and a half later, about two nights ago, I realized exactly what she had given me. I understood that this path is all about living a fully human, sacramental life—with and even through my wounds. I can be a priest to homeless people; I can even do it in the hospital. People are walking through hell with me right now. In turn, I will do that for others—knowing literally in my cancer-ridden bones, that the story ends in resurrection. Death has no power. I am safe, even with an IV dripping into me 400 miles from home. There is life after cancer, even if we coax it into dormancy and it stays there forever.  All of us have gifts to share.  All of us are safe, loved, and free to be our truest selves.

Fear—including anxiety about going back to chemotherapy—evaporated for me in that moment. I felt myself shift from hoping for life, to being invested in it. I’d forgotten how natural and good it feels to live.

I’m going back to Riverside in about a week, accompanied by one of my angels whom I haven’t seen in over a year. She appears when I need her. We’ve been reconnecting through e-mail. It’s so life-giving. She sees with her heart, and that’s where she speaks from. She’s teaching me more than I could have imagined about grace, love, and what ministry is.

I have a community in Riverside that has embraced me. They bring food, blankets, and themselves to keep me company. They mostly only see me when I’m loopy and sick. They call it a privilege.

Cancer is not an interruption in my life. It is my teacher, and right now this is my life. These gifts have come to me because of my illness. I am able to soak them in, now, and to be healed by them more than the drugs ever could. I wake up not scared, but grateful. I know that I can truly live.

The gift in the illness is simple, really:  it is waking up to love.

If you recognize yourself in this, or if you're doing any of these things for others, thank you.

Because I love this song

The recording quality isn't that great, but you'll catch on to the words.

Safe harbors

I realized yesterday, I am completely surrounded by safe harbors. I have a safe home. Incredibly loving, generous friends. People who are more than willing to drop their own lives for a week to walk into hell with me. (Ranging from my housemate and friends who feel like family, to one who offered to go with me to chemotherapy after meeting me at the Ranch once.) A church I love, and others that are also homes. A refuge I can go to whenever I want. Good work I can come back to, where I am a safe harbor for others. My God, myself, my community.

I’m still struck by a line from last Sunday’s sermon. She said that the idea of the reign of God was for all of us to be together, "everybody safe and playful.” A and I looked at each other and smiled. The idea was so Carol. And so right.

We are so loved.

I have a killer growing inside my body. I have a PET scan tomorrow that will tell us whether it’s responding to the biochemotherapy that leaves me still feeling sick weeks after it’s done. Results of this scan will tell my doctor whether to keep me on the same treatment regimen, or give me high-dose IL-2. The side effects are different. I’d be in the ICU. PET scans take some time to interpret. It’s possible, though not their ideal or mine, that I might not understand what I’m in for until we’re back down there. And I won’t really know, until I’ve experienced it.

I am surrounded by compassionate, competent caregivers in the hospital, and friends who love me. It is the one place I don’t feel safe. We fight this disease in my body. The chemicals course through my veins, and do what they do. I can’t control how the drugs affect me, how I feel, or how my body responds. All I can do is allow it to happen, and let my people love me through it.

I’m not sure of the point I’m making. There’s some connection between coming from as much safety and love as I live in, and going to the place that keeps me awake nights. My next trip is almost two weeks away. I’m going with someone who has been a gift since the day I met her. She loves me, and she’s up for this. I trust her, I trust my Riverside friends, and I trust my care team. I know that I’ve done this twice, already faced the completely unknown once, and can do it again. I know I can do what I already know, if that’s where they keep me. I already know to expect some things as IL-2 reactions, because I’ve had them on the low dose. Still, I’m already afraid.

I can’t find the point I’m reaching for. Maybe I’ll have to be on the other side of fear to articulate it. What I can do, is be grateful for all who hold me in love. For all who keep me as safe, everywhere I go, as I am.

You know who you are. I love you.

Healing

A and I went to Livermore on Sunday. We hadn’t been to St. Bart’s in ages. The rector is retiring, and she’s a friend to both of us. I hadn’t seen Carol in way too long. She’s just good people. Loves me utterly, and made damn sure I know it. It was really healing to have that time.

She said something to me two years ago, that’s been whirring around in my head again. I was starting interferon the next day. I was scared. She was the right person at the right time. She said,

“God will either heal you, or change your heart so you don’t need it any more.”

I’m noticing, that I haven’t been asking. I’ve been aware of the presence of healing. Thankful for it. But I haven’t said, “Look, I don’t know if I’m dealing with this at all well, and I’m really not happy about any of it. Can you just come and hang out with me?” Let alone, “I don’t believe you’re a pharmacist, but I really don’t want to die.” I need to say these things. I need to be honest about them.

I think I’ve gotten too busy scrapping through this. Not only do I not have to do that, but I can’t keep it up all the time. I need to remember that it’s not just me, my care team, and my community in this struggle. God is in here too. God feels exactly as you or I would feel, if someone we loved more than life were this sick. God doesn’t come at disease with a scalpel. (God alone knows why.) God comes to us with love. Love sets us free to be who we really are.

There are times for fighting through, and times for remembering how loved we are. It’s okay for me to be honest about what I need and what I want. It’s okay to ask for whatever these things are. It’s okay to ask for wholeness; it’s okay to ask for life. It’s okay to ask for time.

I believe as I always have, that the medical aspects of this are up to my doctors and my body. I won’t be singled out to be cured. I also know that it’s okay to say, “God, please. Help me.” If that help comes in the form of clarity or love, that is healing.

Healing is so much more than cure. Cure is the cessation of disease. Healing is becoming who we are. In all the ways we can think of, and in every way unimaginable. I did not know before I was diagnosed two years and three months ago, that I would be who I am right now. I continue on that course. I believe this with everything I am: love makes real. And real is what we want. Real is where we are going. Real is absolute fearlessness; not defiance, but living in truth. Real is communion with ourselves, each other, and God. Real is love out loud.

Real requires the dropping of boundaries. Becoming demands that I say, “God, I have no idea how to do this. I know that you are with me. Show me how to walk through this.  Show me how to be whole.”

That, I know, God will.

We interrupt this blog for a brief commercial announcement...

Spaghetti Feed Fundraiser "to benefit the care, treatment and general well-being of our dear friend Kirstin Paisley" who is battling cancer will be held Sat. Aug. 21st in Sacramento, CA. Donations can also be sent by mailing checks made out to Kirstin Paisley c/o Safe Ground Sacramento, Attn. Event Coordinator, P.O. Box 1644, Sacramento, CA 95812.


My apologies for this interruption. Regularly scheduled programming will resume shortly.
               Love,
Andee (aka A, aka Kirstin's roommate)

Dark corners

I’m home, recovering from round 2. I’ve been home since Wednesday, I think. I’m less queasy, though I still don’t want to be around food much. I still get really tired, though it’s difficult to sleep during the day (and if I do, I don’t sleep as well at night). I don’t have much energy. A says I’m better by the day, but I still feel like crap. And I’m tired of being sick so much of the time.

It’s like I’m in a room, with no particular furniture. The closet door is open, and it’s leaking darkness all over the walls and floor. When I’m quiet, and alone, I don’t want to think about anything. That darkness is what’s there. I don’t want to talk about it with A, because it makes us both sad. But I need to write it out so I can maybe let go of it.

I’m not depressed, or I don’t recognize it as such. I don’t know whether my body is responding to chemotherapy. I threw another tumor the day I was discharged. It’s maybe as big around as a dime, on my hip. These things seem to sprout fully formed from some kind of hydra’s head. The one on my shoulder seems to have shrunk, a lot. The others, I don’t know. And I don’t know what the deep ones—in my lungs, chest muscle, and bones—are doing. I’ll have a PET scan on the 8th. Riverside will get the results, and will either give me more of the same or change it up. I’m anxious on either account. The devil I know is awful enough. I want it to work, dammit. I want to go back to my life.

The nurse who runs the program in Riverside told me that if I had the same stage of some other form of cancer—breast, say—we couldn’t talk about the odds being as good as they are. 30% is still not good. I know the statistics. And I know I’m an individual. But I’m afraid.

I’m not afraid of the spiritual aspects of dying. I know God is with me. I’m afraid of the physical process. Will it hurt? Will I feel ever sicker, just be uncomfortable? I remember watching someone at St. Aidan’s go through pancreatic cancer. I didn’t see her die. I didn’t see her at all for the last three or so months of her life. But when I did see her, she was so thin it just looked painful. I’m dropping weight now, because I’m nauseous and don’t want to eat. It doesn’t hurt. I’m nowhere near emaciated. I know my appetite will come back in a week or so. But I wonder, will my good times in between treatments be less good? Will I forget what healthy felt like?

I know I could live. I certainly have friends who are praying for that. But I’m not counting on it. I still have the tightness in my chest, that I know is not stress. When I cough, I wonder whether it really is simple allergies.

I want to go where I’m going with my eyes open. But I also don’t want to go there at all. I want my life back. I don’t want to think about cancer, sickness, or dying. I want to be hanging out with homeless people, taking bread to the river. I want to be laughing with my friends. Even if I live, I will never be normal again.

I want to go to the Ranch. I miss my refuge. Weekends at home are fine, but it’s hard to be alone here during the week when I don’t feel well enough to go anywhere. I don’t have access to a car right now, but that might change in a week or so. Then I can break away for awhile. But I don’t want to take too much relatively healthy time away from A, either. I want for us to be able to enjoy what we have. We still play. We still laugh. We still have fun together. I want us to do that for as long as we can.

I have to fly back to Riverside on the 19th. I just plain don’t want to. I will, because I want to live. But I don’t want to be sick anymore.

I’m just so frigging tired of all of this.