Still Life, With Cancer is dedicated to the idea that even–maybe especially?–in the face of a cancer diagnosis, life, with all its challenges, griefs, joys, and beauty, still goes on. Read more About the Blog
In September of 2015, I was a forty-something first-time bride marrying the love of my life. In June 2016, almost nine months to the day after celebrating our wedding, I was diagnosed with breast cancer. Read more About Me
This past Wednesday hubby Steve and I celebrated the eight-year anniversary of the date we first met. Well, met in person. We were introduced via our mutual friend Steve Roberts through Facebook about a week before that, and we traded a few messages and became Facebook friends (the app happily reminded me) on February 21st. Both of us had had enough experience with online dating to know we should go ahead and meet in person before we spent too much time creating (potentially inaccurate) images in our minds of the other. We each had some travel obligations from work approaching, too, so we wasted no time and set up a brunch date at local eatery Rockfish for a Sunday afternoon. We talked for several hours in the restaurant, then continued the conversation in the February sunshine outside the coffee shop next door for another. The rest, as they say, is history.
There’s a bit more to the story–it’s kind of a fun one–but I’ve told it before and better elsewhere, so if you’re curious, you can read it here on my previous blog, Forty-Something First-Time Bride.
With this post I want to give a shout-out to my wonderful husband, who is my friend, my love, my partner, daily hugger, and caregiver. He didn’t sign up for a marriage marked by cancer anymore than I did, and he has stood by me and been my rock through good days and bad. I honestly don’t know how I would have gotten through without him by my side. A lot of people tell me how strong I am (arguable, but that’s a subject for another day), but Steve–he is my evergreen, tall and strong and steady, a sheltering force in all seasons.
Despite the challenges we’ve faced, the wonderful times we’ve shared have been richly plentiful–beautiful hikes in the nearby mountains, live music festivals with friends, travel to amazing destinations ranging from Staunton, Virginia to the Isle of Skye, Scotland. He has faithfully delivered me to a beach somewhere every year we’ve been married (a promise he put in his wedding vows, of his own volition), and patiently allowed me to bring home a passel of shells every time. We’ve laughed and cried and loved and lost and survived home renovations.
Today, I celebrate my honey Steve. We toasted our meeting-anniversary on Wednesday evening with a carryout-wine-and-chocolate tasting from local winery Amrhein’s and Floyd chocolatier Cocoa Mia. We’d technically bought it for Valentine’s Day, but since we were already feasting on raspberry-chocolate towers courtesy of Steve’s arranging a takeout gourmet dinner for us then, we held the pairings for our anniversary.
With each wine-and-chocolate pairing, we added a third element: we took turns recalling a happy memory from our lives together. Perhaps a brunch would have been more appropriate, given our first date, but the beauty is that whatever we’re feeding ourselves, we still enjoy talking for hours. The winning wine-and-chocolate pairing was a Traminette with a Rose Cardamom Butter Cream, which was divine. The memories were all winners, and they inspired us to think about some pandemic-friendly outings we can plan to create new ones.
So, here’s to my honey, Steve. I’m a lucky gal. He’s a catch, and I know it every single day.
I’ve been thinking a lot about laundry. Which, arguably, is not as productive as actually doing laundry–though I am loathe to say it’s not productive at all.
I am terrible at finishing things. Terrible. I start well, with great enthusiasm, but too often my good ideas devolve into good intentions and partially-completed projects. I don’t know why I do this, or why–after fifty years–I still can’t seem to improve on my follow-through.
I started painting the sign pictured above a couple of years ago, when we remodeled our laundry room. We had the wall cabinets that were there removed and replaced, and reconfigured the water access and electrical outlets so we could move the washer and dryer to the back wall. I picked out a cheery tangerine paint and hung a mirror Steve and I bought on a beach trip over the radiator. The long, narrow space between the washer and dryer cried out for something, so on a trip to the craft store, I bought the blank wooden plaque, originally accessorized with twine, intending to paint it.
And then I stalled out for a while, and only made progress–on sign and room–in fits and starts.
I couldn’t find any curtains I liked, so I ordered some fabric from Spoonflower to make some. I wanted to edge the sunflower print with stripes, though, and couldn’t find any fabric that matched the picture in my head. When I finally did, it was a single napkin in the clearance bin at Pier 1. I managed to track down one additional napkin after a multi-state search, and then let the material sit for a while, anxious I would cut my limited supply wrong and ruin it. After some months, I pieced the border on the curtains and hung them. Then I found an ironing board cover I loved, but the new ironing board I ordered was too big for it. Cue delays in returning and replacing the board, then mounting the hanger for it, and so on.
Meanwhile, I started lettering the sign. I’d decided on “Love, Laughter, Laundry: Things That Are…” but I kept debating the final word. Endless? True, but not quite the ring I wanted. Eternal? Was laughter eternal? I couldn’t decide, so I set the incomplete sign aside on my craft room table. Where it stayed.
Last week I had a conversation with my mom. She and my father recently moved into an apartment in a retirement community, and they are enjoying perks like not having to plan or make dinners. While we talked, my mom was putting the bedspread she’d just washed back on their bed, and she said, “Even in the retirement home, there’s always laundry to do.” I laughed and said, “Yes, that’s how I feel about sabbatical. You think you’ll have all this time off from work, time purely dedicated to writing, but there’s still laundry, and house-cleaning, and you still have to bathe and eat. Life goes on.”
Life–and laundry–goes on: that holds true for “living through a pandemic lockdown” and “fighting cancer,” too. The first makes me feel like time stretches out endlessly before us; the second cautions me it’s a finite quantity of exquisite value. I’m thankful for markers of passing time, however mundane. They remind me that there may well always be more laundry, but there won’t always be more time. It is something to treasure.
I finished painting my sign yesterday, settling on the word “forever”–I like to think that laughter, like love, is a kind of constant: a joke heard once is always available for recall; joy is ever just under the surface, waiting for an excuse to erupt. I hung the sign on the laundry room wall today. Laundry needs must be done (to borrow an old-fashioned phrasing I’ve always liked), so the room where the work happens might as well be as bright, cheerful, and appealing as I can make it.
Here’s to love, laughter, and yes, even laundry, for the ability to sustain the ordinary ritual is itself a gift. Now I just need to find a way to replace that awful dryer buzzer with a soothing melodic chime….
First, let me say I understand why Valentine’s Day is fraught for many. I know it’s especially hard if you’ve recently lost someone you love, whether to death, divorce, or break-up. I spent 42 years being single far more often than paired, so I also know the tropes of Valentine’s Day can be alienating to the unpartnered and unconventionally partnered. (I took seriously the lesson of giving everyone in your school class a Valentine, thus I’ve always considered it a day to celebrate love of all kinds, not just romance–more on that shortly.) I also get that some folks just aren’t much into observing calendar holidays in general. That’s cool.
The people I’m talking to are the ones who sniff each year and utter some form of “I show the people I love that I love them every day, so I don’t need to celebrate Valentine’s Day.”
Give me a break.
Valentine’s Day is a day, so if you show your loved ones you love them every day, you are not off the hook on February 14th.
You’re setting up a false dichotomy: EITHER I show my love every day OR I celebrate Valentine’s Day. It’s not an either-or. Ideally, it’s a both-and. Refer back to (1).
Of all the holidays to disdain, why on earth would you choose to disdain one focused specifically on celebrating love?
Aside from the “I’m a world-class Cupid every day” hogwash, the second most popular opt-out clause is “I don’t like the commercialization/It’s a Hallmark holiday.” (A) I hope you don’t celebrate Christmas, or Hanukkah, or Halloween, or Easter, or anything else then, because they’ve ALL become commercialized. And (B) It’s only a Hallmark holiday if you send a Hallmark card or gift, which no one is making you do. Feel free to skip on roses and chocolates and jewelry, if those don’t suit. But insisting on passing up the opportunity to do something deliberate and out of the ordinary to show the people you love that you love them, that you think of them and hold them dear? And then trying to pass yourself off as somehow superior to those who DO make an extra effort, insinuating they’ve just been co-opted by a capitalist machine? What is wrong with you?
Steve and I had a lovely Valentine weekend. He surprised me by ordering a gourmet Valentine Dinner for two (or six, given the amount of food!) from a local caterer that came cooked and ready to heat and eat. We ate our dinner Saturday evening, and saved the amazing desserts for Sunday afternoon, after I made a light brunch of heart-shaped waffles and bacon. I’d already been enjoying the colorful flowers he had sent (I prefer something other than red roses), and he’s been munching on the Kentucky Bourbon Balls I had sent to him. We traded cards (none Hallmark incidentally), including a few from our cats, and he gave me a sweet pillow commemorating our first date.
We both try to show each other we care every day, but realistically, life is hard and often busy with work and home and healthcare responsibilities. Most nights we don’t linger over several courses of dinner, talking for more than an hour at the table. We don’t take the time every single day to write each other lengthy, loving notes or reminisce about happy memories together. We show each other love on the daily in other ways–sharing a morning hug, emptying the dishwasher so the other doesn’t have to do it, offering a cup of tea. But those aren’t quite the same as our Valentine or other special occasion celebrations. And while I know there are probably a few folks out there who manage something extraordinary every day, I suspect most people are more like us. Which means that a day set aside to celebrate love is a gift, a reason to slow down and do something special with and for one another.
Also, I meant what I said about the lesson of giving the whole class valentines. One of the other delights of my weekend was a Zoom call with a small group of girlfriends, wine and chocolate encouraged but not required. We visited virtually for a little over an hour on Saturday afternoon, catching up on each other’s lives, admiring each other’s kitties and pooches, sharing Netflix recommendations, and laughing. I celebrate love for my friends and family as part of Valentine’s Day, too. They fill a significant part of my heart, so why wouldn’t I?
I think of the many joys I would have missed over the years if I sniffed at Valentine’s Day. A fun overnight trip to Richmond with Steve, after we’d played in the snow in Roanoke and built a snow cat together. Spending several evenings making and trading handmade valentines with girlfriends. Purchasing the big metal flower sculpture that makes me smile every time I pass it in our hallway, on another trip Steve and I took to Floyd, where we visited local art galleries. Baking cookies last year for my writing center tutors. Choosing valentine cards to send to our sons.
Which, I suppose, is why I find it rather stingy to be a bah-humbugger about Valentine’s Day. From where I stand, it’s a mistake not to take every opportunity to celebrate every holiday you can, with all the joy and vigor and delight your heart calls forth, especially a holiday that honors love. None of us knows how many holidays we’ll get, and I say embrace every chance you have to be sappy and sentimental. Love is always worth celebrating, every day, including Valentine’s Day.
It’s a cold, drippy February afternoon. I’m ensconced in what I’ve come to call my “nest,” a spot on the living room sofa where I spend much of the two-ish days after each treatment when I feel sluggish and sad. Something about this chemotherapy drug, or the several side-effects-mitigators administered alongside it, sends my mood plunging along with my energy the second and third days post-infusion. I’ve tried to learn to roll with it, give myself permission to rest, curl up with a blanket and a good book for distraction. Yet I often feel guilty and antsy, frustrated by my lack of focus and inability to will myself out of my funk.
It’s fecund breeding ground for brooding, and today my thoughts are vacillating between “the human body is a strange and wondrous organism” and “what fresh hell is this?” To wit: I’ve been dealing with persistent hoarseness going on two months now, and on Tuesday I saw an ear, nose, and throat specialist to see if we could get at the root of the problem. I’ve also been having issues with swallowing, and in the past year have undergone repeated endoscopic dilations, the last one just a few weeks ago. My hoarseness mysteriously disappeared for two days right after the latest endoscopy, but then returned. On the morning of my ENT appointment, I almost choked on a vitamin tablet. It all seemed like it must be connected, somehow.
After listening to me describe my history, the ENT doctor asked if I’d had a recent CT scan of my chest, and “whether it showed any mediastinal lymphadenopathy.” Translation: enlarged lymph nodes in the chest. He suspected that my left vocal cord was paralyzed, possibly a result of enlarged lymph nodes pressing on the recurrent laryngeal nerve, which loops down under the rib-cage. I was surprised that a problem with the lymphatics in my chest could be responsible for issues in my throat, but it’s not the strangest detour my body has taken along this path. A paralyzed vocal cord would explain the hoarseness as well as the swallowing issues, since the vocal cords close during swallowing as well as speaking. If folds on either the left or right are paralyzed, the resulting gap can cause vocal changes and aspiration. Who knew?
The doctor showed me a diagram of what my larynx should look like in both its open and closed positions, then threaded a tiny camera attached to a long, flexible tube through my right nostril and into my sinus cavity so he could take a look at my larynx—uncomfortable, but not much worse than a Covid test. He situated the screen so I could see the camera feed, too, and there it was–my voice box. He asked me to say “eeeeeee,” and while the right side of my larynx flexed closed, the left side only moved a tiny bit toward the center, leaving a sliver of open space in the middle.
It was strangely satisfying, after so many years of scans and biopsies with days or weeks of lag time between test and diagnosis, to see and identify the problem so quickly and definitively. I’m trying not to be too anxious about possible underlying causes for the paralysis. My November CT showed the cancerous mediastinal lymph nodes had shrunk since the previous scan; it is a bit concerning that they may have enlarged again, although inflammation could be a result of a robust immune response. It’s also possible, given my history of radiation and the fibrosis that has developed, that one or both of those have injured the recurrent laryngeal nerve; injury can also occur during endotracheal intubation, which I’ve had my fair share of in the past year.
The treatment for a paralyzed vocal cord is a bit less straightforward than diagnosis, although sometimes the problem simply resolves itself over time. Medically, the impact on swallowing is considered more urgent than vocal changes, so I’ll undergo a “swallowing study,” which as best I understand is me swallowing a series of barium-infused substances of different consistencies while they x-ray the process. Yum. I’ve also been referred to a voice doctor. The likely treatment is injection into the cord of a filler similar to those used in cosmetic procedures to plump it up. For someone who doesn’t like a lot of stuff happening around her throat, the prospect of this procedure both fascinates and horrifies me.
Dealing with a chronic illness means you get all kinds of anatomy lessons you never anticipated (or wanted), many of which fall into the “stuff I never knew could happen” and “wow, bodies sure are weird” categories. I’ve always loved learning new things, so I’ve tried to embrace my innate curiosity, use it as a kind of coping mechanism. That’s more challenging some days than others. Still, whether it tracks the emergence of a new virus or the development of the vaccine that tames it, the science of life astounds. One might as well be amazed.
Inside, I hunker down into my nest, cup of hot tea in hand. Outside, the rain has shifted to sleet. Ice coats the trees, lacquering their black satin branches. They shine against a gray flannel sky.
Snow changes the landscape upon which it falls. It smooths the dips and rises of the land’s topography, even as it throws into stark relief the knotty bark and bent branches of winter-bare trees.
If ever I were conventionally beautiful, I am no longer.
I’m not seeking compliments or reassurances. I do not think myself ugly, though some days I struggle with self-confidence. It’s simply that my body and face have changed in ways that do not conform to society’s ideals of beauty, and I am reckoning with that reality.
Growing up, I didn’t think myself unattractive, but I didn’t think I was especially pretty either. Like so many preteens, I went through an ugly duckling stage in junior high: a mouthful of braces, thick glasses, a head of fine, short hair that never cooperated with the tall, teased tresses popular in the ‘80s. I felt gangly and awkward, out of balance, my skinny legs having grown long well before my torso caught up.
Early on I was labeled a “smart” kid, and given the fierce demarcations of school social categories, it didn’t occur to me that a “smart girl” might also be a “pretty girl.” I definitely didn’t look like the models I admired in the Seventeen and Glamour magazines I devoured; I thought my face crinkled up too much when I smiled, my nose was too pronounced, my chin too undefined. My fears about my flaws were confirmed when a boy I’d briefly dated told me my nose was too big for my face. Then I developed persistent acne.
When, to my own surprise, I took up modeling with a local organization called Fashionista Roanoke in my early forties, it wasn’t because I’d decided I was beautiful, though I was well over most of my hang-ups, and had come to rather like my face, strong nose included. If anything, I thought by modeling I could challenge the narrow American beauty ideals that insisted on privileging young, svelte, willowy waifs. I was 40, not 14; I was thin, but not thin enough by modeling industry standards; I was taller than average, but not the 5’8″+ desired. And while reasonably photogenic, I “didn’t have as many angles as some other girls”—a phrase I picked up from the one episode of America’s Next Top Model I watched at the time.
My look was decidedly different than most of the younger women I modeled alongside. A picture of a group of us lined up on a stairwell at one event is telling: one, two, three sleek brunettes smolder fiercely at the camera, and then there’s me, wearing a broad smile, blonde hair tossed in messy waves. My early beauty influences were clearly more Farrah Fawcett than Katy Perry. But I had chutzpah (a gift of my age), a lifetime of stage performance, and an acute awareness of my body in space born of years of childhood dance lessons. I participated in several local runway shows and a number of photo shoots, and it felt good to get a public stamp of approval on my attractiveness.
Then, cancer. Chemo. Surgery. Radiation. At first, the impact on my appearance was minimal, and temporary. I lost my hair, but it grew back; my left arm swelled a bit after my mastectomy and the accompanying removal of lymph nodes, but the difference was almost imperceptible. With each subsequent recurrence and round of treatment, the changes have grown more profound, my appearance progressively less conventionally attractive. I’ve lost corporeal symmetry, one of the elements science has shown affects our perception of beauty. The lymphedema in my left arm has made it markedly swollen, my shoulder drawn up and rounded by a combination of fibrosis, capsular contracture, and edema. A rope of scar tissue tracks my left collar bone, the skin on both chest and back red and inflamed from radiation dermatitis.
Most distressing, a patch of skin just above my left breast has remained ulcerated for almost a year. My radiation oncologist believes it’s cancer the drugs haven’t reached due to the lack of blood flow in my previously irradiated skin. He told me not to worry about it–“As long as it’s not getting bigger, who cares?” On the one hand, he’s right. On the other, he does not have to live with a daily reminder of cancer festering on his chest, itchy and ugly and scaly. I long for the reassurance its healing and disappearing could provide. Instead, it’s a daily source of shame and anxiety.
The most obvious changes, the ones I cannot hide under cold-weather clothes, are those to my head and face. A beautiful woman, society tells us, has a mane of long, shiny hair, full shaped brows, a thick fringe of eyelashes. These are things that, objectively, I no longer possess. (My head shines, but not in the way the world tells me it should.) And since I’ll be receiving Sasquatch long-term, at least at a maintenance level, I can’t look forward to a time when my various hairs will grow back.
These losses may seem like minor hits to my confidence or vanity, but there’s potentially more at stake. Beauty is a currency. In a 2010 interview with Sharon Driscoll, Stanford law professor Deborah L. Rhode cites a poll conducted for a Newsweek article that “revealed that two-thirds of hiring managers ranked appearance above education in importance for hiring. And the same percentage agreed that appearance would affect job performance ratings.” Rhode’s book The Beauty Bias: The Injustice of Appearance in Life and Law details numerous instances of appearance discrimination, arguing that those who do not conform to culturally accepted ideals of beauty face real consequences–and their legal protections are few.
At present I don’t venture out much, but I do wonder, post-pandemic, what the wider world’s response to my changed appearance will be. In the meantime I’ve been trying to find ways to get comfortable myself with my new look. There are plenty of products out there to help me fake what’s missing–faux eyelashes, eyebrow tattoo stickers, wigs. But faking it takes a lot of time and energy, and I’m not persuaded trying to “pass” looks all that great, or is all that convincing, anyway.
Which is how it came to be that, when we got five inches of snow here in Virginia last weekend, I decided to become a snow princess.
The benefits of conformity notwithstanding, I deliberately set out to find ways to feel beautiful by defying conventional standards and fully embracing my changed canvas. No hair? How about a cap of silver glitter! No eyebrows? Create expression with arching crystal gems. Instead of fake eyelashes, define and highlight the eyes with a line of shimmery ice-blue shadow.
Granted, the otherworldly-snow-princess-look isn’t particularly practical for a run to the grocery store or doctor’s appointment. (Though it would be kind of fun to see my students’ reaction if I showed up in full princess regalia on the first day of teaching class….) But my goal was to see if I could feel pretty, even beautiful, without attempting to “pass,” without attempting to hide all the changes my body has undergone.
The good news is, the answer was yes. The bad news, well–beauty will always be in the eye of the beholder. And the only beholder’s perception I can control is my own. So perhaps a different goal is in order. Whether or not I’m beautiful by conventional standards, I am, as Margery Williams’ Velveteen Rabbit describes it, most decidedly Real: “You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in your joints and very shabby. But those things don’t matter at all, because once you are Real, you can’t be ugly, except to people who don’t understand.”
I think I do understand. And it’s a beautiful thing to be Real.
Yesterday the Book of Faces kindly reminded me that it was two years ago to the day that I kicked off (hee hee) wearing silly socks to treatments as a way to cheer myself through the process. I had been diagnosed with my first recurrence at the time and was beginning a six-week-long course of daily weekday radiation treatments, alongside which I also took a chemotherapy pill. There was plenty of opportunity for lots of silly socks!
The sock idea was serendipitous. The ultrasound that revealed the cancer took place in mid-December, and I’d just found a pair of Christmas socks that made me giggle–black and white cats wearing red scarves, their faces positioned so that they could peer over the tops of your boots, with little shaped pink ears for accents. The few pairs of silly socks in my bureau at the time were either cat- or holiday-themed (sometimes both), and though I’d never really warmed to the trend of wearing novelty socks as a visible fashion statement, the prospect of peekaboo cats made me smile at a time when smiles were in short supply. So I bought them and donned them and posted a photo (pictures or it didn’t happen) while we were waiting for test results.
It wasn’t until I received a package with three additional pairs of silly socks from my mom, though, that the idea of wearing silly socks to treatment really took root. She’d seen some colorful happy face and floral socks at her local drugstore and thought them cheerful, so she packed up three pairs with an encouraging note and sent them to me. The lavender in the happy face socks matched my radiation mask, so I decided I’d wear them the first day of treatment.
Then, I started thinking more about socks: how most people wear them most of the time, but they’re often covered by shoes or boots or pant legs. Present, but invisible. That got me thinking about how so many people face challenges–illness, loss, pain, grief–that are invisible to others. Wearing silly socks seemed a way not only to cheer myself up throughout treatment, but also to honor the unseen battles so many others face daily. I decided to call them #sillysocksforstrength and invited others to join me in wearing their own silly socks, in honor of all those fighting battles unseen, on #funsocksfridays.
I was–and still am–overwhelmed by how many people wore socks on Fridays, and even more so by the many gifts of socks I’ve received. I think I may well have the best curated collection of silly socks anywhere! My collection is wide-ranging. It includes lots of cat socks, both with and without messages. Next in the sock drawer are the other animal socks, bird socks, ladybug socks (my family nickname), and magical creature socks (yay for unicorns and mermaids!). Perhaps unsurprisingly (and a little embarrassingly?), I have an arts and literature category. Then there are the role model socks that feature people like RBG and Wonder Woman, cheeky message socks, bright florals and stripes, and socks for different holidays. I still wear silly socks not only to each treatment, but almost daily. The socks themselves make me smile, and the kindness and care they embody gives me strength.
I’ve also seen some of my friends gift silly socks to others they know who are having a difficult time, and it makes me happy to see the practice spread. I’ve gifted several pairs myself. In many ways the best part has been seeing other people have fun with their socks. Silliness is underrated, and I think we should all embrace being silly more often. It’s a tough world out there, and a little spot of joy on your feet is an excellent antidote.
Here’s to #sillysocksforstrength! May we wear them, may we share them, may we smile whenever we see them. Sock on, friends!
Like so many others, I was awed and inspired by poet Amanda Gorman and the beautiful work she shared at President Biden’s inauguration, “The Hill We Climb.” What a gift for words she has, her performance all the more impressive for her having lived with a speech impediment. Her voice positively soared, and it was a thing of beauty to listen to and watch.
I’ve been thinking about voices a lot lately, as I keep losing mine. The persistent hoarseness I’ve developed is likely a symptom of the hypothyroidism I was recently diagnosed with, that being a common side effect (or, more accurately, after effect) of the immuno-therapy regimen I was on from January through March 2020. For most of the past month I’ve sounded a bit like a Muppet when I speak, my voice high-pitched and low-powered, raspy and squeaky in turns.
The voice loss is disconcerting, eerie even, given the way that fear and anxiety have centered around my throat for much of my life. For as long as I can remember I’ve had a thing about my throat, hating any sort of touch there, barely able to sit still for a doctor’s exam, jerking away from a sweetheart’s gentlest kiss. What’s more, the key recurring feature in any nightmare I’ve ever had is my inability to speak–something bad is happening but I can’t stop it, because when I try to call out for help, I can never muster more than a weak whisper.
When I was younger, a writer friend of mine postulated that my voice was the seat of my power, and that my dreams and discomfort arose from twin fears of either never finding my voice and/or the changes that might come with realizing its full potential. I myself have occasionally mused on the possibility of past lives, whether I might have lived one that made future me’s protective of my throat (French Revolution, anyone?). Now, between my voice loss and the esophageal narrowing and swallowing challenges I’ve experienced, I find myself wondering about cellular memory, what the body knows at its most basic levels, what it might predict.
I know, I know. It’s a little out there. But perhaps I can be forgiven the occasional fanciful turn. If you wish, ascribe my wild theories to the happy delirium resulting from this week’s combination of a newly installed president and my having gotten my first COVID vaccine today! I’ve never been so happy to visit the hospital, or be stuck with a needle. We’ve a long way to go, but it feels like we’re finally moving in the right direction. As Amanda Gorman so eloquently said, “For there is always light, / if only we are brave enough to see it. / If only we are brave enough to be it.”
When I was 22, Gorman’s age, I was still struggling to find my voice, trying to understand how I was meant to respond–as a writer and a human–to feedback on my poems such as “This shows what you can do when you get out of your own way.” It’s difficult to imagine having had Gorman’s confidence and self-possession back then. Thankfully, all I’ve lost at present is my physical voice, and with luck, the thyroid medicine I’m taking will bring it back to full power sooner rather than later. I do miss being able to project (“Herry! Get your paws off the table!”), and as a teacher and performer, I require a strong voice to function effectively. Not to mention, it took me many years to find and embrace my voice, and I still have more to say!
Our front porch is currently under construction. We started with the knowledge we had some gutter issues, which had led to some issues with runoff, which had rotted a few isolated spots in the roof and the floorboards along the front railings. I’d hoped we’d just need a little gutter work, a few replacement boards, and some fresh paint, but that’s not how home renovations work.
We signed on for gutter repair and an entire porch floor replacement. That morphed into replacing all the joists supporting the floor too, since they were too far apart to meet code, and adding footers when the builders discovered there weren’t any. The rot in the porch roof, it turned out, was more extensive than anticipated, partly because there were some places in the metal that were completely rusted through, places someone who lived here before us had disguised by simply painting over them. The porch roof will have to be replaced as well.
So now we have a big hole in the ground outside our front door where our porch used to be. The builders are working diligently, but it’s going to be a lengthy process. By the time all is said and done, the only original parts of our porch will be the columns and the railing and its pickets.
The porch is our favorite room in our home. It’s what sold us–Steve in particular–on buying it. When we were house-hunting, we stopped by the empty house one spring afternoon and sat in the chairs the realtor had staged on the porch. Looking at the rolling hills and towering trees of the park that faced two sides of the house, we were smitten.
It’s unsettling to see it torn apart, even in the interest, ultimately, of repair. That’s how I feel about our government this week, too, and as often as not, it’s also how I feel about my own body in the course of treatment. It’s difficult sometimes to imagine what’s on the other side of destruction, even when that destruction isn’t unexpected; even when, as with chemo, it’s deliberate. You hope the discomforts and sacrifices will be worth it. Time will tell.
I’ve been around this block enough times to know that it will never be the same. However necessary the work, however skilled the reconstruction, something will be lost. For that, I grieve.
Meanwhile our days are underscored by banging, drilling, and occasionally, the soft shwush of a paintbrush’s bristles whitewashing wood. As winter slowly winds its way toward spring, I dream of warmer days, when the sounds of hammers will be replaced by the gentle creak of a porch swing, when calmer voices and haler cells might prevail, when sun-dappled shadows will dance across the painted boards once more.
This week has left me alternately ranting and speechless. Between insurance frustrations, the seemingly unavoidable “this is worse than we thought and it’s gonna cost more than we planned” home renovation revelation, and the horrifying events at the US Capitol, it’s been… a lot.
So after getting my brain sampled (i.e. a Covid swab test) this afternoon in preparation for an upcoming medical procedure, it seemed like a good time to take a walk and clear my head. I kept said head warm with a new lid, this one a Christmas present from Steve, a pleated wool bucket/cloche in a lovely shade of merlot.
I haven’t resorted to drinking any merlot yet, but I haven’t ruled it out.
The light snow we got today had stopped falling by the time I made it outside, but there was still enough white stuff on the ground to make for some pretty views across the park as the sun dropped. Not far from me, a couple pulled their happily shrieking child along on a sled, and a black lab romped through the slush, chasing a ball. I felt myself began to breathe a little deeper, a little easier.
I was pleased to discover that the new hat blended perfectly with the plaid wool wrap I brought back from our trip to Scotland in July 2019. Wearing it takes me back to another gray, chilly day, one on the Isle of Skye, and a cozy showroom filled with fleece and all manner of warm, woolly items at the SkyeSkyns tannery. After shopping, we had tea and cake in a yurt, then huddled up in our Waternish lodgings to watch the play of light and rain on the loch below.
Perhaps, in another year or two, I’ll don my merlot hat and be transported back to a snowy afternoon walk followed by a mug of hot chocolate, or a quiet Christmas morning spent in flannel pjs, giggling at kitten antics.
For now, its pleats are keeping my bald head toasty on a wintry day’s walk. As I eyed the scaffolding climbing the sides of our house, I kept thinking there’s a metaphor in there somewhere. You have to tear out the rot before you can mend the roof. When you’re clearing out and fixing up, things often look worse before they get better.
Here’s hoping. May next week be a bit less eventful for everyone.
As another year (and what a year…) draws to a close, I’ve been thinking a lot about the passage of time. Because of the relative frequency of my treatment schedule and the fact I have a couple of days after each treatment where I’m largely out of commission, I live with a near constant sense of an impending deadline. As each treatment day approaches, I feel much like I do when I’m readying for a trip–there’s always a list of things I need and want to do before we leave, and it always seems the time is too short to make it all happen.
Curious as to its origins, I looked up the etymology of “deadline” in the Online Etymology Dictionary, and found, in addition to the unsurprising reference to “1920, American English newspaper jargon,” the following, rather grim citation: “Perhaps influenced by earlier use (1864) to mean the ‘do-not-cross’ line in Civil War prisons, which figured in the trial of Henry Wirz, commander of the notorious Confederate prison at Andersonville, Georgia.
And he, the said Wirz, still wickedly pursuing his evil purpose, did establish and cause to be designated within the prison enclosure containing said prisoners a “dead line,” being a line around the inner face of the stockade or wall enclosing said prison and about twenty feet distant from and within said stockade; and so established…he, the said Wirz, instructed the prison guard stationed around the top of said stockade to fire upon and kill any of the prisoners aforesaid who might touch, fall upon, pass over or under [or] across the said “dead line” …. [“Trial of Henry Wirz,” Report of the Secretary of War, Oct. 31, 1865]”
Talk about harsh consequences for missing a deadline. Yikes. Not striking something off my list for a few more days pales in comparison.
Writer Gretchen Rubin tells us, “The days are long, but the years are short.” As we round out 2020, I think a lot of folks might revise that statement: “The days are long, but the year was interminable.”
We are all so tired–the medical community, especially–of the pandemic and the damage it’s doing. Yet we’re so close to turning a corner, now, with the vaccine being distributed. We have to be patient, stay the course, even when it’s hard, because the consequences for not doing so are potentially so much worse. Reminding myself that I’m sacrificing a few “good” days up front so that I can have more days, period, down the line is what gets me through the toughest chemo side effects.
Actually, many of the coping strategies I’ve learned from fighting cancer have helped me meet the challenges of this crazy year. Going bald, for example, quickly settled the whole “should I or shouldn’t I risk getting a haircut?” question. But seriously, I’ve had a lot of practice at doing what the mother of one of my fellow cancer survivors preached: “accept and adjust.” I adapted quickly to wearing a mask, partly because I’ve already learned to adjust my daily wardrobe in more intrusive ways, pulling on a compression sleeve each morning before I even put on my underwear. It’s just what needs to be done, and spending energy bemoaning the discomfort or inconvenience is a waste of time.
And I understand that, like cancer, coronavirus is a sneaky little bugger, especially with its asymptomatic spread. I hear so many people say, “But ____ hasn’t had any symptoms,” as if that’s proof they aren’t infected or infectious. It’s counter-intuitive to believe something invisible, something as tiny and common as a virus, could wreak havoc upon your health. Trust me, when the rash appeared under my arm that signaled the return of cancer, a reddish patch not much bigger than a couple of quarters, it seemed utterly absurd that something so small and benign-looking could be life-threatening. It’s hard–but necessary–to get your head around.
If you’re tired of me, or anyone else, banging on about the virus and masking and being safe, I offer this: the last four years have shown me, again and again, how profoundly your entire world can change in an instant. I understand at a deep and visceral level that we are all vulnerable to such sudden shifts. Acknowledging that isn’t succumbing to pessimism or negative thinking; it is, in fact, its opposite. It is that knowledge that encourages me to treasure time, to try to spend it wisely.
“The days are long, but the years are short.” On the whole, Rubin’s statement resonates with me. But as we look forward to a new year (with a new vaccine), I think there’s also value in flipping her statement, our perspective. The days until we can move toward a different (improved) reality are drawing short, and there is hope in that. And if we can hold out and take care of ourselves and each other, our years will, god- and the universe-willing, be long.
Happy New Year, friends! May 2021 bring us all health, happiness, and peace.