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.

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:

  1. 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.

This River, It Rises and Falls

I want to take a moment to thank the readers of this blog. Your responses, your emails, and your support mean a great deal to me. I have recently developed a very serious case of neuropathy in my right hand, which is such a cruel blow, as it is my writing hand, working and coffee hand, and now it burns and burns. I drop spoons, fumble with combs. So I cannot reply, offer the comments, or develop this blog as much as I like. I can’t visit or support others’ blogs as much as I’d like. But I read when I can, send love and support, and in this sister- and brotherhood that is often silent know that I stand with you.

It is January 2020. Each marker of time is a signpost, another hill or copse on the orienteering map of cancer unknowns.

silhouette of tree on top of the hill
Photo by Johannes Plenio on Pexels.com

It feels bewildering to be here. Each day is some new emotional or physical landscape. Today it’s weak and singed fingers. It’s thinning but not bald hair. It’s anger at the world and gratitude for light.

I hear the Jim Nabors song from a far radio somewhere:

Sunrise, sunset, Sunrise, sunset

Swiftly flow the days

Seedlings turn overnight to sunflowers…..

 

This is a song about childhood passing, but it speaks to me too about time. Opening and closing. Starts and stops.

*                                                               *                                                      *

I had a CT and bone scan last week. There is “good” news. “Good” is in quotation marks because when you’ve been with this disease, this abusive lover, as long as I’ve been (almost four years now), you begin to detach from each peak and valley. Detachment is an emotional survival tool. I cannot anymore ride with the extremes of shock or giddiness of this body’s data. I take it as it comes. I hear it and think “What does this mean? Ok, what next?” I no longer trust even the positive outcomes. Though I celebrate and though I thank, I have also numbed myself in order to protect myself from the fatigue of grief’s extremes.

The “good” news? And it is good. My lung tumors have shrunk considerably. The bone metastases are stable. Steady as she goes. The current treatment is working. All signs point north.

The price? Numbness, burning, and neuropathy in my writing arm. Crashing fatigue and nausea for two weeks each month. Anger and irritability. Family and friends who I worry are getting sick of all these peaks and valleys. I’m so grateful they’ve stood by. Their continued presence is a kind of sunlight.

Yet tempus fugit. Time flies.

This life, it is a kind of No-Man’s Land of in-betweens. There is no France, no England. There are only remains.

*                                                                *                                                    *

This post sounds darker than I feel. Reader, if you were with me here, I’d sit us down for coffee or tea and ask: How are you? How is work? Or How are the kids? Always I am working to turn my gaze back to the world, the people here and now, away from the body.  I must remember. I can go to dinner, walk, plant a few seeds or bulbs here and there. Each day truly is a gift.

And yet my own truth is that there is damage, too. There are ruins to rebuild, landscapes to level. Cinderblocks to place.

It is one whole circuitous map, this rubble and this rain.

And the river, always ongoing.

river between green leafed tree
Photo by Rachel Baskin Photography on Pexels.com

 

 

 

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.

 

Terminal is Liminal, With Updates

If you are reading this, you have or know someone with metastatic, or terminal, cancer.

For this person, or for you, a line has been crossed. A threshold. A door which can no longer be closed.

This makes metastatic cancer a space where transitions take place: there are shifts in the body’s capacities, changes in relationships, emotional high and low tides, financial ebbs, spiritual reckonings and ends. One website has a definition for liminal that I really like: “The word liminal comes from the Latin word limen, meaning threshold – any point or place of entering or beginning. A liminal space is the time between the ‘what was’ and the ‘next.’ It is a place of transition, waiting, and not knowing. Liminal space is where all transformation takes place, if we learn to wait and let it form us.” (Inaliminalspace.org)

To wait, and to let form.

And there is grief. Undercurrents of it as wide and deep as gyres linking east to west in surges of the unknown. Where am I? What is next? Who is this new, carved, scarred and asymmetrical self? Where are these treatments taking me? And when will I arrive?

Questions are the language of the liminal traveler. The departure island no longer exists, the destination unfolds during the duration, and so all we have are pivots, coasting, and turns. We are always consulting the map, which is the body, and often a scan. And so we query and trace and consider, uncertain and unresolved.

Waiting. Letting things form.

At some point I turn and recount the slow degradation of my body. Even as I write “my,” there is a part of me that does not want to own this, I reject and reject the ownership of this disease as “my,” but there it is, near my rib again, in my arm again, proliferating in its malignant exponentials. And so in three years the changes add up: mastectomy, lymph node removal, oophorectomy, rib removal, hair loss. Once I sat in the doctor’s office and caught my reflection in the mirror. I could not help the gasp of sudden, utter grief I felt at this, this ogre-like body I saw facing me – bald, gashed, pale, a compression-sleeved arm covering my eyes. “A transition.” A transition into what? Who?

The kind doctor: What’s going on?

Me: I used to be a person.

Silence.

Kind doctor, with a big intake of breath, taking my hand:  You still are.

How this humanity breaks my heart. It is the one sure map I keep as I go forward.

*                                                           *                                                               *

And so where am I? I’m in cycle 6 of immunotherapy. Scans next week will determine if it’s working. If it isn’t, my treatment choices become limited. I’m on a list for a local hospital’s clinical trial. I could also try carboplatin – it’s the one last actual chemotherapy that might work.

We’re meeting with the palliative care team next week to discuss end of life plans. This doesn’t mean hospice is imminent or that I’ll die soon. It means that we’re planning a roadmap – there’s that word again, a way going forward, a plan as if – for pain management, resuscitation choices, financial directions, and so on.

My energy ebbs and flows. Some mornings I can walk and get groceries, but by afternoon I usually need a nap. Some days I am totally prone, in bed, can’t get up. I often have to cancel plans. Some relationships have fallen to the side. I have had to set boundaries when needed in order to preserve what time I have left. This is not personal. It is survival. And pain flares, stops, flares again in no predictive pattern. It is all liminal, day by day, and puts burdens on my family and friends. For their kindness and understanding I will always be grateful.

This liminal living is not all sadness. It has given me time to listen to the backyard finches, stop and hug my husband and daughter, watch the apples ripen on our tree. To have coffee and cherish friendships. It’s given me time to listen and to slow down. To read. To watch bad tv and enjoy it. I flew to Santa Monica with an old high school friend and ate nearly $100.00 worth of lobster. Bliss!

If there were a scroll with one destination, I would write friendship and offer it to you.

And love.

They are the only way  – is it forward?

Is it out?