Tag Archives: grief

At the table: I’ll have a double handful right now, please

My dear son Kai returned to Montreal Sunday. I am so grateful he had a chance to spend two and a half days in Atlanta with me, a whirlwind of three doctors at two different Emory campuses. I made macaroni and cheese while he was here, (added bacon and subbed a little soy milk), and because the avocados were so pretty, I picked some up too. Thanks to the inspired presence of Michael and Kai, the guacamole got chopped bacon added as well.*

A friend took me to the grocery store Friday morning. There’s a sentiment too often inscribed on wine glasses and aprons these days, but during WWII, steely-eyed Londoners reminded each other to “keep calm and carry on.” I suspect it’s a cultural thing, perhaps a gender thing, but “carrying on” has always led me straight to thoughts of my belly. No matter what happens, we all have to eat, right? So, although I could not rationalize it one single bit, it felt okay for me to be in the grocery store Friday morning with my life in slo-mo shatter all around me.

I found the okra but they had black spots. “Do you have any fresh?” My friend who carried me to the market is a mind-reader. The produce manager smiled at her and returned in short order with a bin of okra pods, green as God intended. As I sorted, I remembered to breathe. I was looking for the short, tender pieces. The new ones, more fuzzy than spiny. I focused, sorted, breathed. I began to see how I might carry on.

I had my 90-day check-up last week, and here’s the bad news:  five new lesions on both lobes of my poor old liver. Here’s the good news: I’ll be starting hormone shots soon, and these may shrink or slow the tumor growth, alleviate some of the nasty GI symptoms, and also act as markers for targeted radiation therapy

I remembered all the times I’ve picked okra. My daddy used to grow a little bit in the backyard, when I was little and we lived in Kansas. He showed me how to pick the tender pods before the spines got mean. He taught me how to make snapdragons yawn and he teased my mom about her fierce loyalty to Jiffy corn bread mix for breading okra. But he kept a box of Jiffy mix in his cabinet for the rest of his life.

This put a smile on my face: remembering all the many, many times I have splashed that sunny yellow Jiffy mix, oil and beaten eggs across all the many stoves I’ve owned. The innumerable skillets full of the most delicious, tender, crispy, sweet, salty sliced joy from the garden that I have proudly presented to a tableful of guests, guarded at the kitchen counter, jealously hoarded for a latecomer. The buckets of sweat that have poured down my face while ceiling fans and floor fans roared and percolated the sultry Alabama air.

“Look.” My friend had found the discount rack. “This is the best risotto ever and it’s only a dollar.”

I wouldn’t bite. “It’s out of date.” I went back to fondling fuzzy baby okra pods.

“No, it’s not. Have you ever had homemade risotto?” Well, no, I haven’t. Or rather, I hadn’t up until then. She convinced me. I bought it. A pound of fat, unsullied white mushrooms, selected slow. And a pair of strawberry cartons on the fly on the way out the door.

I wanted to cook the risotto first, since I’d never tried it before. You have to stir the stuff nonstop. Thankfully I had enough clout to press Kai and Michael into service. It was good. But the okra? It was heavenly. It was love-on-a-fork. It sang to me of my mother, my children, my past. I was tired and didn’t make it as carefully as I might have but Kai knows his part.

“Best okra ever.”

We finished up the odd meal with lots and lots of strawberries and canned whipped cream and those perpetually stale dessert cups. Nectar of the gods, I tell you.

This thing we humans do, this preparing and sharing of food. It has such power in it. My friend Ellen Beaumont Ballard, my friend Margery Thomson, my friends Phyllis and Anne and Melanie, Bridget and Carole and Tommy, all my parish family who have scraped little bits of orange cheese on celery sticks, dumped a box of crackers on a plate, put another pot of coffee on. We know that power. My entire life, the go-to response to strong emotion is food.

I was at a memorial service recently, for a man deeply loved by his colleagues, students, and family. We spent the weekend together at Bald Rock Lodge on Cheaha Mountain. An army of people, from age ten to ninety, kept food and coffee and sodas and snacks piled high on tables stretching the length of the room. Waves of people came in and out, migrated to the patio, down to the motel pool, out to the lawn. They laughed and loved and remembered their friend. I watched, mostly. And although I didn’t know Dr. Olander or his family, I was nourished. In fact, when we left, I was flourishing. Renewed and reinvigorated.

Lucky me, I got to go to a wedding in early June, too. We sat under the summer trees near the Platte River, long rows of picnic tables, and ate pie and danced, celebrated love and family ties, and those tables, too, were overflowing with something, some power greater than mere calories, physical sustenance. All these long, laden tables I have been invited to, stumbled over, contributed to the bounty or not, they sustain me now.

I had my 90-day cancer check-up last week, and here’s the bad news: CT scans show five new lesions on both lobes of my poor old liver. Too much for surgery. Here’s the good news: I’ll be starting hormone shots soon, and these may shrink or slow the tumor growth, alleviate some of the nasty GI symptoms, and they’ll also act as markers for targeted radiation therapy if that becomes an option. My original prognosis, a 20% chance of surviving five or more years, hasn’t changed. I like my Emory docs; from what I can tell from my research they’re near the top in treatment of pancreatic neuroendocrine cancer.

If you know me well, you know I’m the most gullible person alive. I believed in jackelopes till I was thirty (what, my dad would mislead me on that??). I’ll spot fairies and djinn and angels at the drop of a pin. I prefer this world with a dusting of magic. Perhaps because I want to see it, I do. Even so, I have company in my capacity to believe. Any number of my cousins would swear to the presence of the Holy Spirit at sweet Olivia’s wedding in Omaha. Great clouds of angelic white moths swarmed the memorial celebration at Cheaha. Discouraged, aching hearts are renewed and encouraged and restored over and over, and simple kindness blooms underfoot in all directions. Beautiful things that should not happen, do.

Maybe it was just luck that allowed Kai’s schedule to fit in a trip to Atlanta. I think my Higher Power knew I needed my son to be with me and Michael when we got that news, and then to meet my great psychiatrist at the Winship Cancer Center, and my incredibly compassionate pain management doctor. I’m so very glad I could fry okra for Kai, and spread a tableful of love, nevermind that we ate off plates in our laps in front of the tv.

As a Christian, the Table with the deepest significance for me is the altar where I gather with my brothers and sisters to feast on Christ’s sacrificial love. One of my favorite preachers described that table once as extending, somehow, from my beloved parish home Saint Andrews, to heaven, through time and space, filled end-to-end with all whom we have ever loved and lost and all those who are to come.

That Table, now. It is in my heart. And so, dear friends, are you. I often don’t feel like eating at all these days, but whatever you’re serving up that can’t be tasted or seen yet warms the heart? I’ll have a double handful, please. Right now.

Will you tell me about a time when you’ve found more than food at a table full of folks? Or if you don’t feel like writing it down, just take a moment and remember what it feels like. We’ll make the world a little more beautiful, one thought at a time.

*My most recent favorite t-shirt slogan: “Because of bacon, I know Jesus loves me.”

 

What’s a good read worth?                 

I’ll Sleep When I’m Dead

what price, facing the wreckage of my past…

After becoming a mother in my late twenties, I zealously guarded my sleep privileges. When my children were older, I heard several variations of this thought: why waste time sleeping when there was so much living to get to? I was deeply offended. Sleeping late, long, luxuriously, was my reward for hard work and stress and parenting.

Several years before my cancer diagnosis (although the cancer was already hard at work in its own indolent way), I began having terrifying episodes of insomnia. They seemed to be connected to the heart trouble I developed in 2006. I would wake up in the wee hours with immobilizing chest pains. I slept alone; Doug and I were separated for years before he actually moved out of the house. So the pain would wake me and I would begin a vigil of fear and shame.

These days, I can’t always sleep. I meditate and pray. I putter, trying to shave a few seconds off my Freecell time, noodling around on the internet, flitting through Facebook. I read, a lot. I ruminate more than I should.

The fear was that I was actually dying of a heart attack. I have a very mild case of congestive heart failure and a very active imagination. The pain was transfixing – literally pinning me into the bed while I struggled to breathe and slow my heart rate. The shame remains more difficult to speak about. But isn’t that the bondage of shame, anyway? The inability to speak it aloud?

I was ashamed that I would be found out as a fraud. That I was not really sick, that I had somehow manufactured the experience of pain. I was deeply ashamed that somehow, my mind had tricked my body into feeling symptoms. I felt shame that I might be, however inadvertently, taking more than my fair share of attention, of medical care, of health insurance benefits. I felt such deep shame I even made up a little rule for myself: no more than one ER visit per year for chest pain.

Seeing my marvelous cardiologist every 9-12 months, as she recommended, we spent a lot of time talking about those chest pains and my fears. She ordered tests, changed up my meds. But the chest pains kept recurring, and I kept spending those wee hours of the morning, two or three times a month, in a fug of shame and pain. Insomnia plus a crippling fear of impending death plus shame is a potent and no doubt toxic mix.

Along with the initial cancer diagnosis in August 2017, I was told I have ulcers. In the flurry of consternation about pancreatic cancer, somebody prescribed me the generic equivalent of the little purple pill, and I’m happy to report I have had not a single episode of that particular insomnia since. I also learned that if you think you’re having a heart attack, you can get up and move around. If the pain lessens or changes, it’s probably not your heart.

Since the diagnosis of metastatic neuroendocrine cancer was confirmed in January, I have been experiencing several new kinds of insomnia. Unfortunately, most of them are related to pain. There’s the snakes in my belly that were the early harbinger of the cancer. There’s a pain in my upper back that I really think is my poor old liver quivering from repeated insult.

There’s an ache in my heart that sometimes flips into rage when my powerlessness crosses the threshold of my awareness. The post-surgical hernia, despite my best efforts, has grown as big as my left tit and is quite a bit more firm. It hurts if I do too much. These past few weeks I’ve had a constant headache and feel like throwing up most of the time, and all of these aches and pains are amplified after midnight.

So I can’t always sleep. I meditate and pray. I putter, trying to shave a few seconds off my Freecell time, noodling around on the internet, flitting through Facebook. I read, a lot. I ruminate more than I should. But the idea that sleep is something I’m entitled to doesn’t hold water anymore. I’ve had an important revelation:

I really was sick, all those nights I thought I was dying. In spite of my first-class health insurance, in spite of my faithful adherence to Western medicine, its skewed values and narrow perspectives, in spite of a fine education and my white skin and my privilege and my clenched-teeth determination to wrest what I want out of life, that system missed a simple case of ulcers, then misdiagnosed cancer as an emotional problem. Complicated my recovery with poor post-surgical care and then, again, misdirected my pain and channelled my shame to work against me.

My pain is real and my shame is unnecessary. In fact, millions of women just like me, throughout history, suppress their pain, or report their pain and are ignored, minimized, shamed for listening to their bodies and reaching out for help and health. So it’s okay to stay awake during these wee hours. Maybe even necessary. Because there is somebody else out there, struggling with pain and shame and fear. I’ll sleep when I’m dead. Tonight, I’m with you.

Update

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.

An unanswered NET cancer question I’ve been writing about NET cancer for nearly 25 months. But yesterday someone asked in a search that brought them here, “How does neuroendocrine cance…
WALKINGWITHJANE.ORG

This is me, asking for help.

Hey, is this your image? Artist unknown but appreciated. Stencil on concrete, circa 2013 From my camera.

Hello, my friends. It’s been confirmed. I have fourth stage pancreatic cancer, a type of rare and relatively slow-growing neuroendocrine tumor. The five-year survival rate is 20-25%. I’m getting care at Emory University’s Winship Cancer Center in Atlanta; they have a specialty clinic for this type of pancreatic cancer. I am praying and scheming to make my personal 5-year survival rate 100% and you are already drafted as a co-conspirator.

I’m so very fortunate in so many ways! I’m frequently staying with Michael. His new place in Atlanta’s Westside is comfortable, convenient and cat-equipped. I have a decent chunk of life insurance and short-term disability resources, due to my early adventures in advertising (I sold myself on the idea while creating the advertising for it, an occupational hazard). But these benefits take time to line up.

For a year now work has been difficult and symptoms like pain, diarrhea, nausea and vomiting have made writing to deadline stressful. Since my surgery in October, narcotic painkillers keep some pain at a distance, but with the unfortunate side effect of distancing myself from my brain as well. These same issues, plus geographic distance, are complicating my ability to earn from my other business, hosting international medical students for 3-6 month stays.

So I’m asking for that kind of help, too. Financial. If you can kick in a few bucks, I would really appreciate it. I’ve been shitty my whole life about writing thank you notes, but I will post a thank you note of at least 1,000 words for every $350 raised. I love you.




Love Wins

DSCN1271
Michael and me at Dragon*Con in September.

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.

Home-Made Balm

So, here’s another procrastination:

Home-Made Balm

Dear Anna, I was driving home with the baby tonight

(keeping him up later than I should)

singing songs my mama used to sing

draping them over him like worn cotton sheets

appeasement he accepted

with only the smallest of whimpers.

 

And I suddenly wanted

those old melodies to travel through space to you

a soothing, tender layer of sound

wrapping around your heart,

your mind

(whatever part of you needs solace)

 

Somehow, I knew those soft strains were traveling to you

and I became greedy to share

all the little comforts of my ordinary life with you:

The fact that my girl’s grown an inch in a month

the breathtaking curve of the baby’s cheek,

plump and perfect like a peach

the feel of the dirt in my hands

and the firm green wholeness of the iris I’m transplanting

 

Dear Anna, I send you this home-made balm with love.

Sweet dreams, bright soul.