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.
…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.
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.
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?
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.
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.
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.
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.
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.