Breast cancer – 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?

Brief Fanfare for the Ordinary

I never thought I’d live to say it, but here it is: It’s my daughter’s first day of senior year.

Cancer has now been my companion for over five years. It’s been an unwelcome visitor, a deadly ghost, an iron wheel turning under the street. And yet my daughter lives, I live, my husband lives—and this first day back at school is a sword in hope’s stone. We claim it, it is ours.

There will be no trumpets. A few screens will go black. We’ll look at the grass, finches will twitch, and the train calls will continue until dawn.

But eventually the fog will clear and in friendship with the scrub jays and bright red zinnias I get to say: I’m in remission, my daughter’s back at school, nothing in this can sway.

Who? asks the owl.

You, says the ground.

For today.

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.

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

You Gave Cancer Everything, and It’s Still Not Enough

I’m still alive.

And so grateful to be able to write those words.

I had scans in July and all the tumors are stable. No growth. Holding steady. Starboard as she goes. Life has settled into a routine of chemo every three weeks, with one week of recovery and two weeks of near-normalcy. One week on, two off. This rhythm stabilizes my life and makes it easier to plan rest, meals, and activities. It gives me hope. And while I know I’ll be on chemotherapy forever, this chemical pace gives room for living and for life.

I am slowly learning how to accept the likely-permanent paralysis of my right arm. It is a slow process. Dictation software helps, and my daughter and husband have rallied, too. But the magnitude of it – the utter uselessness of this limb now, the sudden, startling flopdowns when it’s unsupported, its fishlike swing and sway, its blankly numb detachment from the whole of my body’s honed, coordinated machinations, its sheer weight and cumbersome ostracism, a rogue gong, a flaying odd pendulum—is a continuous, displaced, awkward reminder of cancer treatment’s costs. What is the cost of living? What are you willing to pay?

I think of Jane Hirshfield’s poem, “The Weighing.”

“The world asks of us

only the strength we have and we give it.

Then it asks more, and we give it.”

It is all we have, this sad giving. Reluctantly we open our fists, offer our veins, bare our heads, and display and platter our full selves for the reckonings of scan results. We hope for months, beg for years. We search online, query the doctors, roll over with the real and dream upheavals of this nightmarish, dazed half-life we plea to withstand. Oh we are a desperate chorus of endurers hoping to be whole.

And each day is one and one, the word “more” a felt bead on a rosary we hope to hold.

I Miss So Much About My Job

Education Week has published an essay I wrote about ending my career due to cancer.

Here is the link.

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

Updates. Also, Sick of Sickness.

It’s the post-Thanksgiving hubbub and cozy couch life. We’ve eaten as a family and hung out with dear friends, and gratitude for each small bite abounds. We bought and decorated our tree yesterday, which was strategic planning on our part, as my next chemo cycle started Friday afternoon and we knew it would wipe me out. So Friday morning, we scrambled. The tree is lopsided, imperfect, and beautiful. There’s a metaphor there for living, I think.

Xmas Tree

I’ve started a new chemo cycle. The immunotherapy I was on, Tecentriq, nearly eliminated the larger tumor under my armpit. Unfortunately, as cancer will do, some cells developed resistance to the immunotherapy and moved into my lungs. I now have 5+ tumors in both lungs. It’s impacting my breathing and causing some coughing. This was terrible news for our family and has caused yet more grief. We’ve told our daughter about this recurrence, that it’s treatable, and that we’re taking things one step at a time.

Those conversations with our child – they are the worst, most wrenching part of this dread tunnel.

And so I’m now on Carboplatin, Gemcitabine, and Tecentriq, all at once. After my first dose last month I slept for nearly 36 hours, with one – or two- hour wakings for water and food. I kept very little down. This treatment plan, if successful, might add another year to my life, but I will be on it forever or until it stops working, and sick for 1/3 of the time.

It’s the worst treatment to date. For about 7 days after, I am very sick, despite anti-nausea medications and steroids. Carboplatin and Gemcitabine can really knock down blood counts. Some people need transfusions, and I hope I do not.

How do I feel about this? How does one go forth, knowing that 1/3 of his/her foreseeable life will be flu-like nausea and pain?

I still choose to remain in gratitude for each day. Each day these eyes manage to open is one to be thankful for. I planted daffodils and crocuses to invest in next spring, and I make wishful, hopeful travel plans. My daughter still has homework, my husband likes a good meal. Friends are treasures, better than gold.

And yet I’m so sick of being sick. So sick of relating to people through the lens of disease. There are times when I wonder if someone is reaching out because of obligation, or because of something else. I blame no one for this. It’s the nature of cancer, and people mean well. But the lens of cancer forces all kinds of urgency, can make people want to be a “good person” and reach out, when really it’s not necessary. And yet sometimes it is. And the hard part is to navigate asking and receiving, distance and proximity, and knowing it’s clumsy and hard and the forging of a new relationship with people around you.

And understanding that the lives of others go on. Your disease is not the world. People have kids and dilemmas and issues and stories that I want to hear about, and to be a part of outside of cancer. The continuum still goes on.

In a lopsided, beautiful tree, the continuum still goes on.