Fear, hope, sickness, God, and me

Or, a monster-long catch-up:

I’m coming out of an inward time. A horrible cough that turned out to be a reaction to Temodar (that’s better, but it’s spring, so now it’s Central Valley allergies), tumors that make me feel like a washboard, living and breathing fear too long, not sleeping, and being emotionally and physically exhausted, made me quiet for awhile.

A friend called me “spiritually fearless” yesterday. I didn’t know what she meant (I do now), but the phrase itself gave me enough willingness to wrestle that I actually want to write again. That’s a good thing. I have some things to sort out, about fears in general. Frustration and hope. Me and time and God.

First, thank you to everyone who donated to the American Cancer Society through my Relay for Life page. I meant to thank people individually, but hardly ever did. I was coughing like mad, knew my soft-tissue tumors were growing, felt awful emotionally and physically, and mostly went inside. I dredged myself up to respond to people on Facebook, but that was the extent of my interaction. So, thank you. You are helping more people in more ways than you know. Including me, just by being here and supporting me.

The Relay itself was, well, a victory party that felt very strange to be attending. When I chose one, I was looking for something within commuting distance that I was likely to be alive for. Sacramento in mid-April seemed like a good bet. Sac State sponsored it; their first time. Turnout was small, and I was twice the age of most people there. But their hearts were in it, even if it did feel like a cancer-themed frat party. Thing is, I’m just not a gung-ho kid anymore. I’ve been living with cancer for three years. I know who’s winning, even if I do have more hope now than I did then. I looked at these happy, innocent 20-year-olds playing Frisbee in the center of the track, and I felt so distant from them.

They had one speaker before the survivor’s lap. He’d had stage I Ewing’s sarcoma when he was 9, and has been in remission for 12 years. He’s a student at UC Davis now. Childhood cancer is horrible. I know that. But I felt envious of his health. He looked, moved, and breathed like any other college student. He can feel confident that he’s done. I never will be.

I was okay during the survivors’ lap, except that walking on uneven ground aggravated my already hurt knee. (I think I injured it initially by going down on it too hard, getting out of the shower coughing and gagging.) A and I walked the survivors’ and caregivers’ lap together. She asked how I was, and that’s when I lost it. After our lap was over, we tried to watch the first team lap for awhile, but I was a sobbing mess and we both wanted to leave. While I know I have survived this, so far, I also know I won’t continue to. I’m here because of my doctors, my friends, and the sum total of good luck I’ve had in this: catching my primary tumor before it had already metastasized, and biochemo having held the tumors steady for as long as I was on it. My survival has very little to do with me, other than being lifted up by everyone around me, and cooperating with medical decisions. It’s not like you can be good enough or strong enough to beat this. We’re doing the best we can to fight it with the tools we have. I have no more control over cancer than that.

I remember figuring out last summer that it was the lack of control that scared me. I think that’s in the mix again now. I can see my soft-tissue tumors, and know that they are growing. (I found five new ones in the space of 24 hours, last weekend.) I can’t see inside my skull. (I’m trying to schedule a follow-up MRI; less for my peace of mind than because I’ll need documentation that the brain mets are under control, for any kind of clinical trial.) My cough terrified me until we figured out that it was a reaction to Temodar; I’m off that drug now because it visibly wasn’t working to control tumor growth. (Good news: I can breathe. Bad: now we have to look for something else that crosses the blood-brain barrier and has a sliver of a hope of working.)

A friend and I were talking about the dying process, resurrection, and what I’m afraid of. If the brain mets kill me, I will either go quickly with not very much warning, or slowly over weeks or months. Or something in between. There’s no way of predicting ahead of time. I think about that constantly. But when she asked, I thought, “Am I really afraid of it?” In a practical sense, I do think about seizures every time I get in the car. (I’ve never had one, or I wouldn’t be driving.) But I think my reluctance is at least as strong as my fear. I really just don’t want to leave. I love this life and this world; I don’t know any other. I love my friends here. I love wordplay and language and conversation. I love street fairs and farmer’s markets, fresh snap peas and real people playing real music, unplugged. I love the wind in the trees, the jasmine in the back yard, the feel and smell of spring. I love rocks and water and ocean waves. I love redwoods and rivers and getting my feet wet. This earth is still my home.

I’d rather pray from where I am, for as long as I can. The idea of absolute union with God doesn’t frighten, but it shocks me. My friend looks at that as adventure. I’m back here saying, “Wait—isn’t that like going off with a stranger?” Even though I know God knows me. It took me a long time to trust the humans I’m closest to. I feel God in wind and water, nature and morning tea. (When I do that—the Lenten and Holy Week readings have scared me off of Morning Prayer for awhile. I did it a few days ago, skipping the readings but praying the canticles anyway. I don’t want to argue with John, or take Jeremiah seriously and be afraid of God.) My image of God is diffuse and unfocused; I “get” the Spirit but have no use for a Father (Creator poses no such challenge), and Jesus is more in my head than my heart. I am grounded and comforted in human touch. I don’t want to leave the arms that hold me.

People look at me as a symbol of resurrection. They know how sick I am, but see me acting like myself and being completely alive underneath my headscarf. Or they read these words, and get a sense of the spirit in the writer that I am. Right now I don’t know what to do with the whole concept. How can I? I haven’t died. But I feel like I’ve been living Good Friday for an awfully long time.

When I was detoxing from interferon, and later after each biochemo cycle, I’d get a rush of energy and feel my core self coming back. I’d be all like, “Yay resurrection!” I knew that was too shallow to be real, though, and I know I need to get this more deeply than my body’s experience. My friend describes it as reunion: Mary seeing Jesus and thinking he’s the gardener, then realizing who he is. She’d never expected to see him. That kind of hope was never in her imagination—then she’s flooded with it. That, I get, but I don’t know what to do with it. It’s one piece in this puzzle that I’m still working out. I think I’ll understand it, while I’m still here—as much as any human can. But unless I win the medical lottery many times over, I won’t be one of the ones who is given years or decades more than they expected. We’ll keep trying things until none of them work, or until I’m too sick to keep going. I can hope for a cure, but I can’t put my faith there.

Some people tell me, and probably many others don’t, that they’re praying for a cure for me. I’ve really been struggling with that. I don’t believe in a pharmacist God. I have real issues with the idea of God curing a few people and not everyone. But because I won’t ask for it, and because I resist it, and because I’ll likely argue with you if you tell me that’s what you’re praying for—doesn’t mean I don’t want it. I’m sure some of my tug-of-war with God: “I love you/Who are you?” comes from here. The last thing I am is at peace. My feelings are a conflicted mess. I haven’t been able to sing out loud since before my walkabout. My soft-tissue tumors are growing, and I’m finding new ones. God knows what’s happening in my brain—the symptom that started this hasn’t returned since radiation, but where will I place my hope if it does? I’m watching this disease overtake my body, and all I can do is say yes to trying new treatments. If I can be cured, hell yes I want to be. Friend said, ask anyway. See how God works in you, if you put that between you. I haven’t, because the thought of asking sincerely makes me want to sob. But I want to try it—not because I think I’ll be cured, but to see what happens inside me, and between God and me. I’m going to the Ranch next week. I think I’ll find a safe space there, and let it go.

Medical next steps: not sure. Temodar didn’t work, so my doctor took me off of that on Tuesday. (I was on it cyclically, and due to start again Easter week.) Good for my breathing, as I said—bad because not a lot of drugs work against melanoma, and/or brain mets. The next thing looks like either ipiluminab or a clinical trial. I don’t know anything about the protocol for ipiluminab, only how toxic it is. It was only approved a few weeks ago. I may need to go to Los Angeles to get it—which sucks but at least isn’t Riverside. (I would go to the John Wayne Cancer Institute, outside the Kaiser system. My oncologist knows them, and has good feelings about them.) I could look up the protocols right now, but I don’t want to do that this soon before bed. I’m still not sleeping well, probably more from stress than anything else. The other option would be a clinical trial. A is researching those, with help from (I think) the Melanoma Research Foundation. The trick is finding a trial that will take you. I haven’t exhausted all other options—I haven’t tried high-dose IL-2. (It has some effect on 10% of patients, and doesn’t work against brain mets anyway.) We don’t know if my brain mets are stable. My having done interferon excludes me from some trials. So, we’ll just hope and see.

Realistic hope is hope nonetheless. I feel better than I did before talking to my oncologist on Tuesday. I know exactly where I am, prognosis-wise. I also know that I’ve lived ten months with a prognosis of six. Stranger things can happen, than an experiment working.

Of course I know I’m doing hope gymnastics. Call it denial if you like; I assure you it is not. You have to think like this, if your back’s against the wall. I walked out of my doctor’s office, already believing in the next unknown. If nothing works, I will watch myself get sicker and die. If something holds it at bay, or reverses the disease process, I will live. Holding on to hope keeps me able to get out of bed.

I avoided Lent, and I am avoiding Holy Week. As I said, I’m living Good Friday. My one exception is Easter Vigil at St. Gregory’s on Saturday. I’ve been wanting to Vigil with them for years, and was always either committed elsewhere or living too far away to make it work. But I made some friends on one of their Ranch weekends, and one of them is opening her home to me Saturday night. I really wanted to go to Olympia for the Procession of the Species, but this year it’s also on Holy Saturday. I’ve done the Procession lots of times. I’ve never done this. And I needed Easter more.  (I'll try to go north, if I can, sometime later this spring.)

After that, a week of Ranch time. I’ll be there at the same time as the Threshold Choir. I know them and love them—I also know what they do, because the Bellingham branch sang to me over the phone. (They sing to people who are very sick, or dying.) I don’t know if sharing the space with them will be good, or hard, or both. But every inch of that place is holy. Some part of me will be healed. Grace always, always happens there.

I’m not dead yet, and I’m not giving up. The struggle’s getting more and more real, though. Particularly since I am still myself. I still feel like me. And I still just as passionately want to stay here.