I know my cancer diagnosis has bumfoozled the heck out of me. One of the things that’s been so confusing is figuring out the connection between the fairly crappy survival rate (20-25% for five years) and the actual cause of death for patients with my diagnosis. Because the cancer grows slowly, and I will have CT scans every 90 days for a year or so, it’s unlikely that the neuroendocrine cancer itself will kill me. It’s likely to be liver failure, a blood clot, or something else. But regardless, I keep asking the docs if it’s really gonna be just five years, and the answer is yes, over and over. Damn.
If the docs who did the first cancer surgery had known more about NET cancer, or pancreatic neuroendocrine cancer, they would have tested the tumor cells to see which endocrines are being produced by my cancer; it’s frequently complications with the overproduction of these chemicals that is the cause of death for patients like me. But the docs didn’t check, and I won’t be able to find out until I grow another tumor. This story is about a woman whose neuroendocrine cancer involved the overproduction of serotonin: http://walkingwithjane.org/…/…/25/net-cancer-what-kills-you/
I hope to spend a little more time with my oncologist in June. I have never yet had a doctor sit down with me and explain the type of cancer I have. I have had several doctors scold me for looking up information on the internet, though. Go figure. My pain management doc recently explained to me that oncologists sometimes limit the information they give to newly-diagnosed patients so the patients don’t get overwhelmed. hmm.
I have been begging for information for months, after years of begging for help. I’m discovering that many, many women are going through this too.
Cancer sucks. Our healthcare system kinda sucks too.
Every year, my parish family compiles a book of Lenten Meditations. We’re each asked to read and reflect on the day’s assigned scriptures from the Old Testament, the New Testament and the Gospel. This year, I chose to write about the epistle: 1 Cor. 13:1-13. Here’s what I wrote:
Choosing between the readings assigned this year was tough. I want to share with you that the voice of God from the burning bush was actually the voice of Charlton Heston, Moses’ own voice, as portrayed in the classic “The Ten Commandments.” I’d like to talk about how I struggle with belief, like the boy’s father from the Gospel reading, and how his cry “I do believe, help me overcome my unbelief!” resonates for me. But that would be too easy.
Instead, here’s a confession: every time I hear those verses from Corinthians, for almost thirty years now, I gnash my teeth or cringe or crumble a little around the edges. I can’t love people like that. I can’t be always kind or eternally patient; I get angry without cause. I hold grudges. This winter, by God’s grace, I keep reading. I’ve spent so long being angry at St. Paul for pegging me as less than perfect, I’ve missed the rest of the story.
Every time I hear those verses from Corinthians, I crumble a little around the edges. I can’t love people like that.
What has come to me, softly, gently, is that God is describing Her feelings for me. God is telling me I can know everything, endure all hardship, even move mountains, but it means nothing until I know in my heart and my head just how perfectly I am loved. Love is the key.
A friend of mine was photographed last year holding a sign saying simply “Love Wins.” When I saw those words, my heart expanded three sizes or more, just like the Grinch. (I’ve already confessed my commonalities with that mad, sad green creature.) Forgive me, deep thinkers and theologians. That’s my spiritual core in two words: Love wins.
If it’s human love, it will be flawed. No matter how desperately I might strive for it, I can never be anything other than human in this life. I hurt people; people hurt me. I can work to love myself better, I can try to be a more loving sister, daughter, friend, mother, but I will fail, at times spectacularly, just like everyone else.
But leaning into God’s love, I’m discovering a love that never fails. One which “…always protects, always trusts, always hopes, always perseveres.” At precisely the right time in my life, in the winter of 2016, I have shed a little more resentment, looked deeper into my fears, glimpsed, dimly, that which I have yearned for all my life. I am fully known, and perfectly loved. Love wins.
I am no stranger to the disease of alcoholism. I have two aunts with many years in recovery and a brother still struggling. So when my husband and I visited our oldest son, Andrew, during his first semester of college out of state, I was very concerned about his behavior.
“…now I understand how the stigma of addiction and mental illness causes so much pain. Parents need to be more open, be willing to say ‘I’m really struggling,’ and get help for themselves and their children.”
He’d joined a fraternity, and during our visit, my mother’s intuition kicked in. I could tell it wasn’t just the normal college drinking experience. Andrew was secretive, and what we saw at the fraternity house was alarming. Andrew did not do well academically that first semester but convinced his dad to give him a second chance.
My sister and I buried my father’s ashes on a cold gray day last spring. We were at Zion Cemetery in Blaine County, Oklahoma, not too far from the farm my family settled illegally and then claimed in the Oklahoma Land Run of 1889. You can see two sets of grain elevators from the graves of my grandmother, great-grandmother, great-aunts and now my dad. There’s not much else to see other than the ever-changing sky, a tiny abandoned church and an honest-to-God outhouse with a crescent moon carved into the rough wooden door.
It was really cold. Two days before, I had stared in amazement as snowflakes spiraled down outside the window. I had planned to camp out; it was the second week in April and who would expect snow right before Easter? On Palm Sunday, I sat in church and felt the earth tremble; an earthquake, my aunt told me brightly, a common occurrence in Oklahoma these days. A few hours later, the tornado sirens howled; a twister was tearing up the plains somewhere south of town. Oklahoma felt apocalyptic last April.
We scraped some dirt over the urn. A prayer would have felt pretentious. I’m not sure my dad even believed in God when he died. My sister and I held hands and sang a chorus of “Amazing Grace,” the wind snatching the notes off our lips.
It was too cold and I was out of kilter. We poked our heads inside the abandoned church; the windows were long gone, leaving only four walls of rough whitewashed brick and a rusty tin roof. Animal droppings littered the empty structure, huge, bigger than my thumb. The thought of an animal that size was frightening.
Two days later it was Good Friday, bright and warm. I was facing a sixteen-hour trip south, but Zion Cemetery called, and I obeyed my instincts.
On my way out of town, I heard bells. It was noon. My lovely little church in Birmingham has a most solemn Good Friday Service at noon; it begins with the church stripped bare of all its banners and fancy drapery and the clergy lying full-out face down on the floor around the altar.
Again an inner voice whispered, just as I passed a church. I pulled into the parking lot and crept inside, late for the noon service. They were reading the Passion Gospel and a lady in the back smiled at me when she handed me a bulletin. As we read the familiar story of Christ’s trial, persecution and crucifixion, my world and my heart began to settle into a rhythm: powerful, soothing and good.
My spirit was almost light as I left the church, and I stopped at a store to assemble a funeral feast. I got two pieces of cake, some bright ripe fruit, a little cheese, a styrofoam cup of macaroni and cheese. On an impulse I grabbed a handful of chunky, beaming sunflowers.
It took an hour to drive north of town, west down the highway past the grain elevators, then bump down the dirt road to the cemetery bounded by a rusty, sagging fence. It looked vastly different, which makes perfect sense: when the sky is nine-tenths of the display, a vivid blue infinity is a remarkable transformation from a lowering blustery gray.
I had a book with me, a funny one, by Terry Pratchett. I spread out a blanket under a splintery old cedar and read my book and laughed out loud. It felt good to laugh. My dad has a wicked sense of humor and he loved to read. I slowly ate half a piece of cake, savoring the joy of my dad’s sweet tooth and a family tradition of “dessert-first day.” I breathed, deeply: cedar, dirt, sky.
Now my heart was so light I was almost skipping. I scattered a few crumbs of cake a few feet away from the tree and invited the ants to my banquet. I laid the sunflowers in a row on the family graves and they smiled back at me: great-grandmother, grandmother, aunt, aunt, father.
I remembered I had a kite tucked away in my camping gear, and that endless sky cried out for a kite. I couldn’t get it up in the air; I have no talent for aerodynamics. But I tethered the string to the gravestone and it kicked around on the ground, yearning for the wild blue yonder. I sang a song from my favorite movie; it felt so good I sang another song, a Bible-thumping camp song from my father’s youth. I remembered his eyes match the Oklahoma sky on a bright spring day.
I thought, for no particular reason, of things that frightened me and decided to look inside the old church one more time.
I remembered the warmth leaving my father’s hands as I wept and let him go.
I leaned into the empty window frame of the old Zion Methodist Church and heard a storm of wings and wind and watched, transfixed, as a Great White Owl burst from the rafters, paused, as if posing for a snapshot, and whirled out the opposite window, an angel of a different kind.
I laid my daddy’s ashes to rest on Good Friday last year. Today, as Lent begins, I wonder where my journey leads me now.
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