Uncategorized – Pink Stinks

because you were curious

Hello there. It’s now September 2022. I look out into the backyard, and half the apples on our tree have fallen; only the highest fruits, the ones with reddish hues from having the most sunlight, are still clustered and hanging on.

Is there a metaphor there?

Do these branches, these still-green leaves indicate something about holding on? About how the low- hanging apples are at the most peril of being plucked? How the best is for the latest? How waiting brings reward? How, first or last, we all fall? Or how the length of your life is just luck, and, pick or plummet, you did the best you could?

Or is a tree just a tree?

We’ve been giving away apples by the boxful, the bag full — and this year I bought an apple peeler and made containers of apple butter, apple turnovers, steel oats with apples and cinnamon. Every morning I look outside, and as a mother I feel the bend of our tree’s boughs, both the grief and gift of her plenty. Who wouldn’t wonder? Why wouldn’t Eve bite? Who wouldn’t, seeing such circles and bloom, sense a desire to the bite the crisp sweetness borne by the summer sun?

This post was supposed to be a cancer update. I was supposed to tell you how I’m doing, the state of my health. But once again I am distracted, caught up in gazing outside, wandering and thinking about apples, or trees, or flowers, or coffee, or books, or cats, or anything else besides it.

I’m doing well. I’m still in remission, thank goodness, and slowly regaining energy. My stamina is much better. I am able to walk 30 minutes to one hour a day. I have started volunteering once a week. I’m still taking Tecentriq, an immunotherapy drug, once every three weeks, but if remission continues until January the oncologist has said we can consider stopping treatment. That I might be considered cured.

It stuns me that I am able to write that. I have metastatic, stage 4, triple negative breast cancer and I am nearing two years into stable remission. When I say “remission ,” I mean there is no evidence of active disease, (NEAD), which does not mean that I am disease free, but it does mean that I am stable. It means that there has been no disease progression. It means the tumors still exist, but are dormant.

It means I am incredibly lucky.

It also means that I am in an odd place emotionally. I have both tremendous gratitude and tremendous uncertainty. I am poised on, and practicing breathing into, a space of deep uncertainty. I am still unable to predict the future. Those of us with cancer know that remission is a weakly-patched wheel. We check it constantly, ready for the next blow. I will forever live from scan to scan, in three to six month increments. And this is good news in one way. In another way, this news brings fear, anxiety, and rage at life’s cruelties.

Always the sway: living, dying; famine, feast.

People with cancer have bitten an apple. We know things. There is a medical wrath that we suffer through. We face snakes, and worms, and sickness. Some of us aren’t sure about God.

Some of us taste, some of us spit.

We are curious and angry and in awe.

We hang on.

Winter will come soon enough.

Curiosity is a sign of intelligence, doncha know?

inside this love is a bird singing

at first no one spoke. no one looked up.

hope arrived in the form of this

one or that one: nurse, doctor, another cancer patient

looking past a head scarf to a smile. i pictured

birds: scrub jay, towhee, mockingbird;

finch, sparrow, dove—

who are you? i wondered, looking

into each one’s face. bird,

or man? woman, or wings?

the world’s glass melted into waiting.

half-awake, i listened. heard one voice fill the clinic

with sickness, spit. another moaned

hunger, hunger. another

two, a pair cooing, filled

this no-heaven with plans for hope’s

return. in a day one can make

all kinds of plans, i thought,

imagining a child trembling, leaning back, taking

chemo into her veins. little twigs. they looked

like the feet of birds, or imprints

from a mother or father who,

clinging to the girl’s thin wrist

dug in and gripped, and in

the only animal way possible,

said live.

June Update

It’s been months since I’ve updated this blog, and life has rolled, slid, lurched, stopped and gone and done quite the turnabout.

The short of it is that the cancer is in remission. The most recent PET scan showed that there is currently no evidence of active disease. The tumors are still there, but the chemotherapy (Carboplatin, Gemcitabine) has rendered them dormant. Those tiny varmints are sleeping. Listless. Dull. Eyes closed, little one.

This is of course “good” news in the conventional sense. And oh how I pause at this word “good.” Because “good “ is supposed to mean happy. It’s supposed to mean a party, a celebration, cakes with candles and the luck of being alive. An arc of fireworks to disguise lamentations. Weathering calamity. See how the showers hiss home. Almost witchcraft.

And that’s what my current state feels like: outlier status with a dose of cautious optimism, all while standing on an airport’s moving walkway. A flat escalator that has suddenly stopped its trajectory to death.

It’s quite a shock.

No Evidence of Active Disease. NEAD. What this means is that I’m stopping chemo for now. My bone marrow gets a reprieve. Immunotherapy (Tecentriq) continues. But the side effects (extreme fatigue, nausea, headaches, constipation, depression, hair loss, low blood counts, body aches) should slowly ease up. This summer will be one of healing. I will go slow.

And here’s the thing: I did nothing special. No special diet, no extra workouts, no special herbs or positive meditations or supplements. I just went to chemo and did the best I could. I drank Coke once a week and ate some sugar. I rested. I drank coffee with friends. I’m not vegan.

I’m saying these things to offer hope, and to get across that I’m not special. I’m not chosen or especially worthy—no sainthood badge here. I’m just lucky.

Lucky to be alive and to walk and sing (tho my teen daughter would disagree there) and gripe and garden and be.

And I know this may not last.

But oh how the soil sings in my fingers, how the seeds fall so.

A One-Armed Christmas

…means everything takes longer, everything is basic. Followers of this blog will know that all of the cancer surgeries and treatments have caused a rare but known side effect called radiation-induced brachial plexopathy. Basically, my right arm is paralyzed. I can no longer use my arm or hand or fingers.

And that doesn’t undo me. Oh, no. One-armed me is still me, only danglier. Slower. Pokier. Accidentally slappier . And this year, even with this new, unanticipated diagnosis, I’m hell-bent on making a heavenly, albeit klutzier, holiday. Laissez les bon temps roulez!

But how will I manage? How to set up the decor, the cuisine? Here’s the one-limbed plan:

Let the tree standards sag. Yes, I said “sag,” and I am unashamed. (Skin and body parts are already there.) This year’s tree has fewer ornaments, fewer lights, and less perfect spacing. Silvery strings of faux pearls asymmetrically skim the branch tips in an uneven spiral ladder that, in past years, would have badgered my sense of organization into nighttime handwringing, but, lo, I have but five functioning digits this year, and this, dear reader, saves me. The stringed pearls and all the ornaments are uneven, atilt like drunken orbits, and I am, oddly, not unhappy to allow this unruly state of festive whimsy to take precedence over my need for faux-fir control. Let the ribbons reign askew, let the star steer south. All systems are jaggedly GO.

2. Packages shall remain in their original mail wrappers. Observe the box. Observe the plastic bag.(See photo below.) There will be no coiled ribbon adornments, no glittery paper sheen to enhance the gift itself. I am not yet able to use scissors with my left hand, and cutting and taping would require an ambidextrous choreography of such complication as to induce hysteria. I am somewhat sad about this. Otoh, it saves resources and paper. Boxes and plastic it shall be.

3. Vegetable chopping will be done by our teen and by my patient husband. From our teen I anticipate globally-circumnavigable eyerolls. She will likely take frequent breaks to scroll on her phone; I will gently urge her on to continue slicing the celery bits. But the mood shall remain lighthearted because beets, potatoes, beans and barley are a bounty to push back sadness. Like the oats and peas song, who knows how they grow?

4. I will remember what I can do. One arm is useless, the other has flourished. But two strong legs carry me to forests and trees and water. When I close my eyes, I can hear house finches and mourning doves singing the start of a day. Poems like this one, by Thomas Centolella, illuminate the ache, wonder and mystery of being here at all. And I can still read them. I can cackle and jump. I can plant and sautee garlic, hoard chocolate and recline. And food! One arm means an artfully poised wineglass during dinner. Let the singularity of my upper limbs not deprive me of a smooth cabernet, which I will gladly toast to this season. Glog, sugar cookies, rib roast and pie. A caress. One arm, ladies and gentlemen. The cat’s soft fur, a little spritz of perfume, a fistful of soil; cloudberry jam and a steering wheel in a car going who knows where. One arm, one arm, one arm can hold it all. Fist bump!

Thus the holiday goes. Everything will take longer and will be wobblier. Do not hand me the hot soup tureen. But look in our kitchen window and you’ll see the soft edges of steam from something warm, a dish probably held by two or three of us, ready to pass, season, or heartily eat.

Cheers.

This disheveled tree is a testament to lower standards.

Timeline

The latest scans show no disease progression. Steady as she goes.

And here it is, late November, and we’re going to put up the tree. Each ornament a memory.

Some lingering. Some old.

Where last year I didn’t think I’d live, and now the miracle of being here again.

Rivers ongoing.

Somehow a home to return to. Somehow the sounds of living.

Why am I not astonished?

Refrigerator hum. A car riding by.

The clock ticks, it’s winter, all day

I will remember these things.

Your Odds of Pain Are 100%

There was a time when the evening light shone just so, a time when you leaned back, glass in hand, and in good company, talked and listened and laughed. The table might be full, you could follow your friend into the kitchen and ease in to stir the still-warm sauce. All around a warmth. The sizzle of meat. Clinks and short silences and nowhere to need be. The threats of the world ebbed and you were well.

Fragments of that life scattered after the cancer diagnosis. Life was no more a surety, the needle’s draw drew breath with it, too. Hospital visits filled the days. And as I begin to recall those earlier days, I remember that friends and family formed a nest of support where I could hide, gather strength, grieve. They gathered pieces of my life like birds gather yarn bits and floss, and made a home. I will forever remain grateful.

But the light always changes, must change. Friendships and relationships felt the tides of time ebb and flow in new ways, and I found myself re-negotating, re-feeling what it meant to interact with others as a terminally ill person. This was entirely unexpected and sometimes brought anger and new grief. One friend burst out laughing when I told her of my cancer. It stunned me. Our last two encounters have been within the last two years. She spent both times talking the entire time of carb dangers and the powers of essential oils. I no longer see her.*

Another friend had been carrying many secrets, and they asked repeatedly for me to keep more. I couldn’t do it.

And I had to begin removing myself from people who could not listen. The lack of listening began to irritate me more and more. I have often been on the quieter side, but I grew angrier and less patient with people who dominated our time. Time was all I had left, and I wanted a voice in it. I also wanted silence. I wanted joy. I wanted depth and a space to grieve.

I would find myself deeply angry at having let myself be bulldozed by someone’s need to vent for hours. It struck me as deeply selfish. And here I must own my lack of assertiveness; I should have spoken up, but my reserves were low. I was tired and sad.

So I let some friendships go. (Family is a whole other post.) Some of these were a relief. Others I miss. And some friendships deepened. Others with chronic illness, caregivers, neighbors—so many of these grew into what felt like family.

I do not regret these shifts. They were necessary and largely inevitable.

But I long for a time when cancer didn’t filter through each word and day. I miss banal, workaday casualness, conversations about supper, a lightness to my orbit. Cancer is so damned heavy. For everyone.

And the carrying, it must go on.

* Details and info have been very much changed

Yet Another Side Effect: Paralysis

It’s been awhile.

Like all of us, I’ve been dealing with the restrictions of COVID-19. Couple that with the long-term chemotherapies I’m taking, and it’s been a difficult few months.

But something happened that has altered my life almost as much as the cancer itself.

My right arm is now completely paralyzed.

I never thought this could happen. I’d never known it was possible. And yet it is a rare but real side effect that can happen when scar tissue, repeated radiation, and multiple surgeries impact the arm/shoulder area, leading to a diagnosis of brachial plexus injury (BPI).

And so I am relearning how to write, cook, and live as a lefty. Everything takes longer. I drop cups, I knock my pill bottles over. My right arm hangs limp like a floppy fish. I wear a compression sleeve and sling to keep my arm from flapping about. My husband fills out forms, my daughter helps me dress. I need help chopping vegetables.

There has been some grief about this loss, and anger too. But I am trying to remember that I can still walk, listen, sing, laugh, see. I can write slowly. I can read.

Mostly, I am alive.

These are good things to remember.

I hope that you are staying safe and healthy, too.

Cancer Narcissism and the Things of This World

The mind must attend to itself, to its own existence. It scans, assesses, summons us to rise or sleep.

It is a self-perpetuating organ that attempts to drive its own perpetuity.

When cancer invades the body, as it has mine, now my arm bone and both lungs, the mind – my mind – moves into focus, fixation. All thoughts lead to tumors. I wake up and scan for pains and aches. Could be a recurrence. Could mean death.

Fixation turns to obsession and closes me off from noticing the sunrise, listening to the mockingbirds of this morning, or just closing my eyes and enjoying being. I lose life. In dwelling on cancer, I lose precious time.

It’s a difficult balance. My mind, in its drive for survival, hungers for wellness, insists on roving for any possible bodily blip, taking up emotional and cognitive space for simple living.

I understand this need. It is simple care driven to the end of the continuum, labeled now as “hypervigilance” or “anxiety” on the scales of self-awareness. I understand this need, but it interferes with my life, and I struggle to practice living each day without succumbing to grief, despair, or panic.

There’s another dark side to this self-monitoring: narcissism. A medically-induced self-centeredness. Constant bodily scanning, medical appointments, discussions about “how are you” and the morning confrontation of lymphedema, arm pain, and hair loss (yet again) turn my gaze inward. Some of this can’t be helped, as the new normal of my life means accommodating these side effects. But I don’t like it. And I am keenly aware of how much of this chronicling of my ailments is so self-ish. As in, revolving around me.

Hello, I say to the mirror, noting my falling lashes. Hello, echoes my mouth.

I turn away from this reflection each day and make myself engage with the world. One must converse with both the bodies and birds, deliberate on the nature of things, I hear my old professor say. I will not be a prisoner to the tyranny of disease, I will not allow cancer to become a home base. Life continues. People have lives, lives that I am genuinely interested in hearing about, want to ask about, want to be a part of outside of illness. Weeds need pulling. Apples need picking. A friend wants coffee, the leaves are already piled.

An owl hoots and the morning garbage truck roars down the road.

Ask.

Look up, the world tells me.

And I do. Will do. Must do.

person holding round frame less mirror — Photo by Lisa Fotios on Pexels.com

Jealousy and Metastatic Cancer with a Disappointing Ending.

I was recently diagnosed with stage iv triple negative breast cancer. This wasn’t my first time with it – three years ago, I received my initial diagnosis of stage 3 of the same disease. Once I finished treatments – mastectomy, chemotherapy, radiation – I was told I was “cured.” I thought I was done.

Not so. In 2018 I had my first recurrence (a tumor near my ribs) and had surgery to remove it.

In the spring of this year, late March 2019, nearly three years to the day, I was diagnosed with a second recurrence. This time, metastatic. Another tumor in the same area as last year’s, plus lesions in my right upper arm bone, and a suspicious, to-be-watched lesion on my liver.

The cancer had spread. It had metastasized.

And what “metastatic” means to me is “inoperable.” It means terminal. It means The Rest of Your Life.

It means: You’ll never be free of it, it’s here to stay.

The hope I once had of returning to normal is gone. Gone. I will now be living with cancer for as long as I am alive.

And so once again I make adjustments. I grieve, my husband and I talk about our options, we regroup.

* *

I wanted this post to be about jealousy. I wanted to talk about what this new diagnosis means in terms of loss and change, and the way I feel and talk about time. I wanted to talk about what energy means, what an average day used to feel like, and what it is now. How making coffee was just that, and not an arduous series of breaths, painful movements, knocked-over cups and then utter, exhausted relief in crash-sitting to drink it.

I wanted to talk about the ache I feel when I scroll through social media sites and witness families smiling in the sun, a photo of a mother and child in an inner tube on a river, a lazy and slow river where on a beach dogs and small children upon arrival run to greet them. I wanted to write about the long-held ache in my throat when photo after photo of mountains, some friend’s reunion in a cabin, the Paris couple’s kiss, the neighbor’s good times at the local pub, and all of their clicked “likes” and “looking good” comments show up on my feed as if everything were normal. As if time, like the lazy river, was to be had in these long hours, fistful after fistful, all of us just looking around in total wonder, endlessness its own known gift.

Dear god, I miss the eyes half-closed sheer bliss of not knowing it, all’s well, fat tire tube and being just another body in a lit, slow-moving, unpunctured ring.

* *

I wanted to talk about the italics of energy and normal, the new italics of time. Each of these words is stretching forward past itself in an attempt to grab more, take more, because their own current letter legs are weak. Today’s an unknown, the words seem to tell me, so make sure there’s a bit of them in the future. Bank all three: energy, normal, time. Always lean towards the next hour, the next day.

-Is not how I really want to live, though. Too much leaning forward means a weaker grounding, means the weight on one’s footing is likelier to sway. It means I’m not here fully. It means rush and hurry.

* *

I’m so jealous of other people’s lives. Their health, their beautiful families, their cancer- and fear-free lives—

the ability to plan, to think in one- and five-year increments. The gift of time that is handed to them. The safety glass that still protects their days — it’s an illusion of course but they still have it—

Maybe that’s you? Lucky. You’re a lucky one. And you’re innocent of course. How would you know, did I know, that we had that luck when we had it? No one does. It’s the nature of health to be unseen until it’s not. It’s a Plexiglass dome on top of a building.

For me, that safety glass is gone now. A wind is blowing and always will blow. It’s a closer step now to a long way down.

* *

I feel obligated to write something hopeful but I can’t.

It feels more authentic to me to just stay here and say: sudden.

To say: time.

I am not a comfort.

The Last Straw: On Transitioning From the Old Body Into the New

My body has changed, and I’ve got to learn to accept its changes.

It’s difficult. I used to run 10ks, work full time, whip up recipes from Bon Appetit, shop, garden, plan social events here at home, dance with my husband and daughter, flip pancakes, and generally fill our house with the kind of life I’d always wanted in a home. It wasn’t perfect, but my body was an actively orbiting planet around a warmth I hoped to harbor. I worked hard. Like many of us in our productivity-obsessed culture, I bought into the feelings of self-worth associated with being “on top of it.”

This new body is different. Parts of me are gone. I’ve lost strength, lost mobility, lost stamina. A good friend of mine, a fellow traveler on this road of chronic illness, made an analogy that I come back to often. He said, paraphrased, “You used to have 50 straws in a cup. You held them and you could use them every day. When you woke up, they reappeared.

orange and yellow straw — *So much sweetness to savor.*

Now, you may have 25, or 20, or 10 straws. They take longer to come back. And when you select your straw (or task, or thing-to-do) you must make more strategic choices.”

I think of this often. Fewer straws, less energy. Fewer straws, less done. Messier house. Forgetfulness, fatigue, contracting the circle of my hoped-for life.

It’s not that I’m choosing to wallow in grief, although I think it’s essential to our healing that we recognize and allow ourselves to feel our losses fully. It’s not that I’m hanging on to loss. It’s that I feel like I’m in a process of transitioning from an able body into a differently-able body, and what that means is that less gets done. I attend fewer social engagements. I cook less, I attend fewer meetings. I set up fewer social engagements because I’m afraid I’ll have to cancel. I miss my friends.

So, what takes the place of my previous productivity? What do I do with the empty cup space, the space where the straws used to sit?

I rest. I meditate. I go to doctor’s appointments and physical therapy (7 months later, and still going). I write when I can. If I’m able, I’ll do a few chores. I sit and talk with family. Drink coffee or tea. Sometimes I binge watch Netflix shows. I lay down and think. I read.

Sometimes the pain from my surgery and chest scar tissue renders me incapacitated, unable to concentrate on anything but pain relief and sleep. Sometimes the fatigue is so extreme, as it was this past weekend, that I am barely able to rise from bed.

And so I am learning – in the present continuous, as it’s a process – to be compassionate with my new limitations. I am learning to test how far my right arm can reach, how far I can walk (a 1 mile a day workout so far is about my limit). I turn my gaze to the gratitude in small things, to the garden with its blooming borage, ballhead waterleaf, scarlet flax, bachelor’s buttons, poppies, and violets. I think of water, of berries, of the rise and fall of a mockingbird’s tail. I think of spring and summer, my daughter and her laugh, my husband and his deep, true goodness.

This learning is not a straight line.

What keeps you grounded as you transition and think of your new life? Your body’s losses, its gains?

drinking glass with pink beverage and mint leaves — For you.