Shell, Yeah!

Steve and I are on Ocracoke Island this week, one of the most beautiful beaches in the Outer Banks. It’s been a bit chilly, with stiff shore winds, so we’ve mostly been visiting the beach in short stints, clothed in long pants and jackets, walking rather than parking our chairs and hanging out for the day. I hope we’ll get some warmer temps soon, so we can lounge and linger.

The weather hasn’t really slowed my efforts at shell collecting. Despite the reservoirs of shells I have at home, gathered on previous beach trips, I am always on the hunt for the next treasure. When we were last here in September, it seemed like there were fewer whole shells to be found than in previous years, and some once common finds, like olives, were absent. I’d hoped that was a factor of fall ocean currents, but I’ve yet to see even a fragment of an olive on this trip. And once again, broken shells are abundant, intact finds fewer and farther between.

Two pretty moon snails

It’s tempting to see it as some kind of metaphor–my body, too, has felt a bit more broken with each visit. But I hope my ego isn’t so encompassing that I can only see the world as a reflection of my own state of being! The whole world has been muddling along this year, not just me. If there’s a metaphorical resonance in the limited numbers of good shell finds, perhaps it’s in the ways all of our experiential spheres have shrunk in the course of the pandemic.

It is interesting to think about how my approach to shelling has shifted over the years. When I was young, I was less discerning; I was also more impressed by ostentatious beauty. As I’ve grown older, I’ve gained a broader knowledge base. I know what I’m looking for; I take pleasure in seeing and naming the familiar. I have greater appreciation for small miracles and subtle, intricate patterns, even as my eyes aren’t as sharp as they once were.

Baby’s ears and buttercup lucines are etched with delicate markings

My mother recently made me a beautiful journal that declares “My birthstone is a seashell.” Sometimes it certainly feels that way. I don’t think I’ll ever tire of wandering the shoreline in search of treasure. There’s always beauty to be found, if we only look for it.

Beach Duds

I’ve been having a reckoning with my wardrobe.

It’s not the first time. I’ve done the gain-5-10-15-pounds-and-lose-it-again thing several times, usually on the timeline of gaining in winter, losing over summer. I tend to gain around my belly and hips, so the springtime closet changeover often means pants and shorts are too tight, tops mostly okay.

This year’s reckoning has been a bit different.

It was precipitated by packing for a beach trip, typically a joyful enterprise. I adore the beach. The month I spent living on Sanibel Island, Florida, some ten years ago counts as one of the highlights of my life, and Steve promised in the wedding vows he wrote to deliver me to sun and sand at least once a year. Those who know me well know I love the beach as much or more than I love, well, my clothes. So it shouldn’t be a surprise that over the years I’ve amassed a small beach wardrobe. It includes bathing suits, of course, but other pieces too: a green vintage wrap skirt appliqued with a glass of lemonade I bought in a thrift store on Sanibel. A turquoise ombre silk tunic top with delicate embroidery that makes me think of ocean waters. A teal cotton polka-dot button down from Target I like to tie over a bikini top in the same color. Some of my beachy items have sentimental value, like the mint pleated dress Steve bought me an hour before he proposed–probably largely to get me out of the store and walking on the beach so he -could- propose. And then there’s the pink halter dress I bought on my first solo trip to Ocracoke that’s traveled with me on every beach trip since.

Discovering that a number of these pieces don’t work with my new body has been hard.

It’s not simply a matter of weight. With all my swallowing issues, I’ve actually lost weight overall, and my pants, for once, are if anything too big. The challenges are my swollen left arm, discoloration and disfigurement of my neck, chest, and shoulder, and the ulcerated patch of skin above my left breast. My sausage arm simply doesn’t fit into the sleeves of some of my faves, so that’s a complete dealbreaker. And anything with much of a v-neck either calls attention to the redness and lumpiness of my skin, or reveals my port on the right and/or the scabby ick on the left. I know I could still wear those pieces, but I feel exposed in them, and I don’t like seeing other people’s pity or discomfort when they look at me. More than that, I dislike seeing those markers of illness myself when I look in the mirror, and it’s hard to feel pretty and confident when they’re on display.

So it’s been depressing, realizing I have to part with some of my beach favorites. It’s also sobering to realize how much my body has changed since September 2020, our last trip to the shore.

And that’s where the real reckoning is, of course. It’s never really about the wardrobe, is it? It’s about our relationships to our bodies, our feelings about them, our acceptance of or resistance to their changes. For me, that process is ongoing. I keep hoping my arm will shrink down at least a little, that my skin will heal. Things might improve some, but I know my body will never be the same as it was before cancer, before surgery, before chemo and radiation. That’s hard to accept.

I know it doesn’t help, regularly looking in my closet and feeling sad about the things I can’t wear. So maybe I’ll take this as an opportunity to weed out anything that doesn’t make me feel fabulous. I’m learning the shapes and styles that do flatter my new body, and I have one new dress that–even with a v-neck–makes me feel smashing.

And, I suppose, I now have an excuse to go shopping. Steve will be thrilled. 🙂

Illness Management 101: An Update

It’s been an eventful week in Cancerland, and a bit of a rollercoaster at that. On Monday I had a consult with an ENT in Charlottesville about my paralyzed vocal cord. This time Steve got to watch my larynx in action when the doctor threaded a camera through my nostrils and had me make “eeeee” and “oooooh” noises. Talk about knowing your partner intimately. The doctor confirmed that my left vocal cords weren’t moving, and that he thought an injection of Restylane would improve my vocal strength and swallowing. It was a relief to hear that. So we’re set to return for that procedure next week.

Tuesday I had another endoscopy and dilation. I wasn’t terribly surprised to learn that I had significant narrowing again, and they want me to return for another dilation within the next month. I was a bit freaked out when the doctor asked about the lymphedema and tightening in my chest and suggested that if it got to a point where I couldn’t get enough nutrition through, they could insert a feeding tube. What the what? I was relieved when my oncologist seemed puzzled by that suggestion and pretty much shrugged it off.

Trust me, Herry’s epiglottis is cuter than mine!

I had chemo and met with my oncologist on Wednesday. The good news is he scoffed at the prospect of a feeding tube. The somewhat less reassuring news is that I have some new nodules that have developed in or just under my skin. He noted that one thing they’re seeing with some of the new drugs is “slow spread.” Instead of the drugs halting the disease 100%, it’s maybe 98%. “And I want 100%,” he said. So he is currently investigating other options, including testing my possible responsiveness to another immunotherapy drug. He doesn’t plan to take me off the current targeted chemo unless or until he finds something else. But it’s disconcerting and anxiety-producing to see some disease progression.

Thursday was blissfully unscheduled. Friday I had a tele-consult to tweak some of my side effects medications, as well as an appointment for swallowing therapy. My speech therapist is kind and knowledgeable, and she’s focusing on myo-fascial release to get my larynx and epiglottis moving again. I’ve only had two appointments, but I do feel a difference each time. I’m hopeful that the combination of the therapy, dilation, and the vocal cord injection will get me back to swallowing with some normalcy again soon. In the meantime, I have a phone consult with a nutritionist on Monday to talk about how to be sure I’m getting enough nutrients. I’ve already discovered that it’s waaaay too easy to default to eating ice cream. 🙂

Kitties are always good medicine

If you’re thinking that all of this sounds like a lot, well, it is. Sometimes it feels like I have a part-time job in illness management. I’ve squeezed in some painting this week, lots of kitty cuddles, and a few really good naps. (Never underestimate the value of a good nap.) Steve and I are looking ahead to some forthcoming beach time, which always does a body good. I don’t really know what else to do except keep on keeping on, so–I’m keeping on.

I am excited to announce that I’ve been granted a guest artist spot at A New Leaf Gallery in Floyd, Virginia, in September and October. So I will definitely be working on new paintings and getting prints and cards made for that venture. It’s nice to have a creative goal to work toward, so I’m really grateful for the opportunity.

Now, I’m gonna go sit on my front porch and paint. Until next time.

Spending Time

When I was in college, I remember standing in a library feeling overwhelmed by its bounty and the realization that there were so many more amazing books in the world than I would ever have time to read. I’ve been thinking a lot about time and how I spend it lately–and even the way we use the word “spend” to refer to our relationship to its passage. It suggests, like the money we also “spend,” that time is a kind of currency, a limited resource, one we should use wisely.

One of the fears that’s dogged me since my first diagnosis is that I will not have enough time to do or see or write all the things I want to in this lifetime. As the library example shows, this concern did not originate with cancer–and anyone who’s ever seen my craft room knows I have enough projects-in-waiting there alone that even if I live another 35 years, there will be things left unfinished. So my recent preoccupation is not the result of having been given any kind of timeline or prediction. I don’t know anymore than the next person when I’ll make my exit, although, statistically, I reluctantly acknowledge there’s a reasonable chance it will be earlier than I’d prefer.

With my parents’ in front of their former house during our visit

Steve and I spent last weekend visiting my parents in Georgia, and one of the calculations I made about spending time (perhaps you noticed?) was to skip last week’s blog post and devote all my time and energy to enjoying their company. It filled my heart to hug them once again. It’s only the second time we’ve been able to see them since the start of the pandemic, and the first since we’ve all been vaccinated. It was such a joy to visit with them, and also to have a picnic with my brother, sister-in-law, and one of my nephews. My parents have recently settled into a lovely apartment in a retirement community, and this was mine and Steve’s first opportunity to see their new home. They’re still sorting through the objects collected over a lifetime, making decisions about what to keep, what to pass on, and what to let go.

It’s in part my participation in that process that has led me to think about time, and about where value inheres in a life, where it holds. Objects may serve as a window into the past–recalling a memory or experience–as well as providing beauty or use in the present. In some cases, they also project a future: the statue that once stood in the flower garden at my parents’ house was wrapped and transported to our Virginia yard, with an eye toward some landscaping upgrades we’re planning. I also selected some fabrics from my mother’s stash to bring back, with the idea that I’ll have and take time to make something from them. The same is true of the fabric I’d bought long ago that she helped me cut for a quilt: it now holds the memory of our shared experience of cutting, as well as a projected future of several afternoons at the sewing machine.

All of this to say that sorting through objects and making decisions about them is–despite what all the organizing gurus and minimalist advocates tell you–a complicated task. It calls up not only memories and experiences from the past but also raises questions about the future. When the future is already marked by so much uncertainty, that’s a lot to process on a sunny Sunday afternoon.

None of us can know how much time we have remaining. But have I used the time that I’ve been granted wisely? I’d like to think so, though I do have that list of things I still want to do. I’m glad, at least, that the things I fear I might not have time for are in fact things I want to do, not things that others would prioritize for me. I’ve gained a lot of clarity about the difference over the years. Americans live in a toxic productivity culture, and it can be difficult to separate out your own goals from the goals others, who may define success differently, urge you to adopt. Take my academic career as an example. Publication is one of the primary markers of success. I’ve published a few short pieces in writing center studies I’m proud of, but I’m not widely known as a writing center scholar. Though some of my colleagues might see the fact I’ve not published a book in the field as a failure, I never wanted to write such a book. I wanted to create a strong writing center on the local level and focus on building an excellent resource for the tutors and students at my college, and I wanted to focus my writing on creative nonfiction. So that’s how I deliberately distributed my energies. It rankles sometimes that others may judge my career as wanting, but arguably, my blog on navigating cancer has had a far greater impact than any essays I might have penned on tutor education.

Nature and family: two good ways to spend time and energy

I suppose I’ve always been aware that energy, as well as time, is a limited resource. These days, as my energy has been increasingly sapped by treatment and I’ve been frustrated by my body’s inability to keep up with my desires, I’ve taken, some days, to writing a reverse “to do” list. Instead of starting the day with an (inevitably overly aspirational) list of things to do, I make a list at the end of the day of all that I’ve accomplished. I try to be generous in giving myself credit. Once I sit down and reflect, I often find I’ve done more than I realized.

I decided applying that strategy in a larger sense might help me with my worries about not having enough time to do all I still want to do. What if I shifted my focus, and thought instead about all I had already accomplished and experienced? I suspected–partly as a result of toxic productivity culture and having been steeped in others’ ideas of success for so long–I hadn’t given myself enough credit. I suspect that’s true of most of us.

Enjoying the beauty around us — a worthy use of time

It’s been an eye-opening and reassuring exercise. Just as my daily lists reveal, I’ve done more than I thought. Going back to my writing center work–okay, so I’m not a renowned scholar. But I started a writing center from scratch, and over a period of seven or so years built it up to serve over 500 discrete students in over 1000 tutorials per year, repeatedly. That’s a full quarter of our student body that we engage. I haven’t managed a creative nonfiction book yet, but I wrote and performed a one-woman show to acclaim, created two blogs that have reached thousands of readers, and served as an artist-in-residence with a healing arts program, one of the most meaningful experiences I’ve ever had. And then there’s the stuff-I’d-never-thought-I’d do list: Mountain biking. Rock-climbing. Zip-lining. Add in things like falling in love, laughing with family and friends, adopting and caring for amazing animals. And that’s just a fraction of the full list. All in all, I’ve given this life a damn good whirl.

And I’m not done yet. There are still things I want to write, make, learn, places I want to travel. I have a wonderful life, so I’m greedy for more of it. I’m glad of that, even if it means that, 5 years or 35, I’ll likely leave some things undone. Having aspirations makes me feel alive, makes me want to keep going, even on the tough days.

What would you include on your own list of the experiences and accomplishments you value? If you have a tendency, like I do, to feel defeated by the things you haven’t done yet, making a list offers some perspective. It’s also an excellent exercise in gratitude.

Quality time with my parents’ cat Scruffy

I’ve been known, cat lady that I am, to say “Time spent with cats is never wasted.” I stand by that, of course. But I think that phrase is a good metric, overall, to use when deciding how to prioritize time. If I can say “Time spent _______ is never wasted” and mean it, then time spent doing whatever I’ve filled in the blank with is time spent on something I value.

There will always be laundry, dishes, bills to pay. But the more often we can prioritize spending time on experiences that nourish our selves and do good in the world, the happier we’ll be with our investments.

After Easter Musings

Last weekend Steve and I welcomed Easter and the arrival of springtime weather with a wander around the lake at the Peaks of Otter Lodge, a lovely spot a little ways north of us on the Blue Ridge Parkway. Though it’s been some time since I attended a church service to celebrate Easter, I typically honor the holiday in two ways: I spend some time in nature, and I reflect in my journal on spring’s promise of renewal. This year I’d already been thinking about and writing on the lessons the story of Jesus’s resurrection offers when I saw a post by clergyman Jayson Bradley, shared by a former student of mine, Kerri Clark, who is now herself a Lutheran pastor. Like Bradley, I’d seen a lot of “He Is Risen!” posts come across my social media news feed, and my gut response–which I’d been contemplating in my journal–was that that wasn’t the most important part of the story.

Sharp Top at Peaks of Otter

That may sound like sacrilege to some, but as Bradley so aptly explains, such posts seem to celebrate a kind of “consumerist” approach to Easter: “‘Hey, remember when Jesus *did* that thing so that I could *have* this thing?'” Bradley goes on to explain that, for him, for many years, “[t]he annual memorialization of the crucifixion/resurrection was meaningful because it was a reminder of the day a celestial being made a significant purchase for me that was beyond my means.” He notes that this transactional focus elicits gratitude, but it doesn’t transform. In fact, it reinforces a kind of “spiteful exclusivity,” as many read the story to say that only Christians have access to eternal life, a belief that damns (or shrugs off) a significant part of the planet’s population. It’s that insistence that Christians have a monopoly on the truth that I’ve long found troubling and have, for many years, been unable to reconcile with the inclusivity the stories of Jesus often model.

Given how closely I walk with my own mortality these days, you might well think I’d be happy, comforted, even greedy to hold on to a belief guaranteeing me a life after this one. In part because of my resistance to the “it’s Jesus or else” demand, I’ve stepped back a bit over time from my Presbyterian upbringing and at present identify simply as a spiritual seeker. My outsider-who-used-to-be-an-insider perspective has encouraged me to shift my attention in relation to the biblical resurrection story. Instead of focusing on it as a model for how we die, I see its primary value as a model for how we might better live in community with one another.

Budding branches

One important lesson of the biblical Easter story–one many of us, based on much of what I’ve seen this year, have yet to learn or embody–is a willingness to make individual sacrifices for the greater good. I don’t mean literally sacrificing one’s life, as Jesus does. But we’re coming off a time when far too many people have refused to do so much as inconvenience themselves for the sake of others. If the commandment is to “love one another as I have loved you,” and Jesus lays down his very life, then the least those who find value in his message can do is, say, wear masks and get vaccinated in the interest of public health. Proclaiming gratitude to God is nice, but it doesn’t actually do good in the world.

I also think the lesson of forgiveness is powerful, though I come at that, too, from a less conventional perspective. Rather than putting all the emphasis on a God who forgives and rewards believers with heaven (more transactional thinking), we would do better to focus on God’s forgiveness as a model to follow, as we forgive ourselves and each other. Whether we’re Christian, or Buddhist, or atheist, we’re all human, and we will make mistakes, and our mistakes will hurt others. Before forgiveness, though, there must be a reckoning–an acknowledgment of the wrongs we’ve done, sincere apologies, and genuine efforts to right those wrongs. Here I think about systemic racism, complicity, and how we’ve been reminded again and again that we must take active steps to learn to become anti-racist. It seems incredibly selfish to ask God’s forgiveness in the privacy of a prayer and expect to be rewarded in the hereafter, without making any concrete effort to make amends in the here and now.

Neighborhood dogwood

I’m not (obviously) a theologian; I’m not, by many people’s definition, a Christian. And you may well be asking what any of this has to do with living with cancer. I spend a lot of time contemplating my life’s meaning, what contributions to a greater good I have or haven’t made. Easter, for me, is connected to the concept of renewal. As the daffodils bloom and the dogwoods blossom, I’m reminded of how nature cycles through death and rebirth each year, and how each day brings new chances. I’m also reminded that I am not merely a passive consumer of spring’s bounties. I can plant seeds, tend the soil, and participate in acts of renewal. That, for me, is the greatest lesson of Easter.

Wanna See My New Tattoo?

When you lose all your hairs, including brows and lashes, to chemotherapy, your complete hairlessness becomes a visual cue to others that you are ill. It’s possible to pass off a bald head as an intentional style statement, though rarer for a woman than a man, and of course you can cover baldness with wigs and hats and scarves. But once the rest of those hairs go, especially the brows, something about your face looks off. You’d think in an age of mask-wearing the absence wouldn’t be so obvious, but it’s precisely the swath of face exposed between headscarf and mask where something is missing. Minus eyebrows, you tend to look sick, even on days you feel good.

Something’s just missing…

It is, I imagine, a little like being pregnant, in the sense that you’re undergoing an immensely intimate corporeal experience that displays in profound outward bodily changes. Others–even strangers– often take those changes as permission to make comments or ask deeply personal questions. Thankfully no one seems inspired to reach out and touch my head the way they do an expectant mother’s belly, but it’s still disconcerting when someone stares a little too long, or starts offering me reassurances, or sharing their own cancer story.

So it was with much joy and not a little relief that on Tuesday, I had my first eyebrow tattoo session.

My tattoo artist, Jordan Kantor, was recently featured in an article in The Roanoker magazine

I am lucky to live literally around the corner from an amazing cosmetic tattoo artist, Jordan Kantor, of Skin Care Consulting. Kantor works in two sessions, six weeks apart. Her work is detailed and dimensional, the results amazingly realistic. The process was a bit uncomfortable, a feeling somewhere between having your brows plucked over and over again and repeated bee stings. But it was bearable, and worth it. I’m still in the early stages of the healing process–like any tattoo, there will be some flaking and settling of color, and of course, there’s a second session planned specifically because we may decide there needs to be some tweaking. So far, though, I’m thrilled. In fact, it’s hard to describe just how different I feel when I pop into the bathroom or walk past my dresser and catch sight of my face in a mirror–and I have eyebrows again! My face looks almost…normal! Each time, the sight feels like a small miracle.

Perhaps that sounds like an overstatement, but something that creates a sense of normalcy in a body that often no longer feels like my own, functions as I expect it to, or looks like the “me” imprinted in my mind, is a real gift. My face no longer immediately telegraphs–to me or others–“this woman is ill.” It’s a profound shift in my headspace, for which I am deeply grateful.

I won’t say I missed my brows more than my natural breasts, but I will say that it’s easier to fake natural boobs with implants than it was to fake eyebrows with any of the various products I tried. And brows play such a key role in how we read emotions and identify faces. An artist friend of mine told me that whenever he paints a portrait, he starts with the eyebrows, because they are so expressive. Steve was talking to me a couple days ago and said, “Your face is so much more expressive with your new brows!” The tattoos really are a game changer.

So this week, I’m celebrating art. Jordan is an artist, and I am happy to be one of her canvases. My only regret is that I didn’t get my eyebrows tattooed a couple of years ago when I first considered doing it to boost my natural brows. If I had, I wouldn’t have had to spend the last ten months without. I look forward to seeing how my new tattoos develop over time, and doing lots of raising and furrowing and flexing in the meantime.

In Praise of Sameness

I’ve been sitting in the swing on our newly spruced up porch this afternoon, and…well, that’s pretty much it. I’ve been sitting in the swing on our porch. I could add that I’ve been gently rocking, basking in the sun and its warmth on my shoulders. Or closing my eyes every so often, lifting my chin to feel the whisper of a breeze on my face. Whatever the descriptive details, by most measures, I’ve been doing nothing, and today, like yesterday, and the day before, has been quiet and uneventful.

And what a gift that is.

I never tire of this view

In this pandemic year, when for so many of us the days have blurred one into the next, in seeming perpetuity, sameness is not a quality that’s been held in high regard. But it has its virtues. Monotony may be boring, but it also signals that no change has come along that’s ripped a hole in the fabric of your life. Novelty in many forms is welcome, but sometimes no news really is good news. A series of uninterrupted ordinary days is, I think, an underappreciated blessing.

Sameness can be a gift in other ways. I’ve been painting a lot recently, and I like to work in an illustration style, a combination of black ink and watercolors. My preferred subjects are fantastical flowers, funny birdies, and (surprise) cats. When my mother recently passed along a plate I’d drawn for her for Mother’s Day in 1977, I was amused to see that my subject matter, if not my style, was established by the time I was seven. There was something strangely reassuring about that sameness. And now, when I paint, I’m drawn to repetitive pattern-making. It’s an immersive, meditative practice for me. The repetition of line and shape is calming, and I like to think that calm translates to the viewer’s experience, too.

There’s not much else to report on today. I’ve sipped vanilla almond tea and written a few lines in my journal. I’ve listened to happy woofs and barks from the nearby dog park, and watched frisbee golfers fling brightly colored discs toward a hilltop of oaks and maples, their branches still winterbare. Kitty Charlie Kate joined me for a few minutes, sniffing the fresh air, turning her long white whiskers to the wind.

It’s a quiet day here on the porch. New adventures await tomorrow. Today I’m content to watch the shadows inch across the floorboards with the sun’s long arc, one slow minute at a time.

The Good Enough

The renovation work on our porches and gutters is almost done. All that remains is a little touch-up painting, re-screening the upper back porch, and a final walk-through. We’re so, so close: a tweak here and there, and it would be perfect.

That’s how I feel about my recent CT scan. First, some context: I am a recovering perfectionist. Though I was not fully aware of it at the time, I spent much of my life laboring under the false belief that in order for people to like me, I had to be perfect. I thought I needed to say and do and wear the “right” thing for people to admire me and want to be my friend.

I don’t really know where I got this idea, or why it rooted so deeply. But it shaped me profoundly, as it made me afraid to try new activities–what if I were bad at something and other people saw?–and loathe to persist in anything I wasn’t immediately good at. Coupled with the social anxiety I suffered from (before we knew to formally designate it “social anxiety”), I lived much of my young life, outside of interactions with my immediate family and a few trusted friends, behind what I now see was a nearly impenetrable wall.

Porch in progress…so close!

Perfection, of course, is neither obtainable nor desirable. My fears and my perfectionist tendencies achieved precisely the opposite of what I wanted–they kept me at arm’s length from people. Though borne of fear and insecurity, I’m sure my reserve came across as uptight and chilly, maybe even snobbish. By my mid-twenties, I’d begun to become aware of its deleterious effects, and my internal monologue started to shift: “If people only knew the real me behind the reserve….” But I’d spent two decades building that wall, and it would take many more years and lots of practice for me to learn how to let down my guard, to be vulnerable, to embrace trying the thing and failing, laughing at myself and trying again.

So, it’s an ongoing challenge to accept that “good enough” really is–because, sometimes, dang it, I still long for perfection. To wit: last Friday’s CT scan. In my fantasy report, the doctor would have said, “The cancer’s all gone! There’s no evidence of disease!” I knew that wouldn’t be the case, given the fact I’d had a biopsy of a lesion under my left arm a couple of weeks before that had come up positive for breast cancer. We knew, then, prior to the scan, that I still had some active disease. Overall, however, the CT revealed good news: a pleural effusion had diminished, and involved lymph nodes have continued to shrink. I have some additional “stranding” in the soft tissue of my left upper chest, but they think it’s fibrosis and lymphedema-related, rather than cancer. The scan indicates that Sasquatch is continuing to work, holding back any significant progression of disease “in a really big way,” as my oncologist phrased it.

A new spring wreath and fresh white pickets

You’ve heard the saying, “Don’t let the perfect be the enemy of the good,” and I think it applies here. Good news is good news, even if it’s not the miraculously perfect report I wished for. It takes some getting used to, learning to be happy and satisfied with the concept of “living with cancer,” rather than defining successful treatment only as that which results in being declared cancer-free.

Perfection implies the achievement of an ultimate state, a finality that is counter to our constant human striving. I think the builders are supposed to finish up the last bits of our porch reno this coming week. Then it will be time to order a new doormat, replace a couple of cushions, re-hang the windchimes, bring out some plants…. “There is,” as Dharmavidya David Brazier writes, “always something to get on with.” For that, however imperfect the getting on may be, I am grateful.

Heads Up, #11: Blooming Ball-cap

If I recall, it was right around this date last year that our pandemic lock-down began in earnest. My anxiety–as an immune-compromised person–had already been building for a couple of weeks when faculty and students at my college got an email saying classes were suspended, immediately, and that we would be moving everything online the following week. I remember feeling chagrined and relieved, and not a little disoriented.

It’s hard to believe a full year has passed, that Spring, once again, is just around the corner. I’m eager for its arrival, but it seems a bit hesitant, showing its face only in fits and starts of sunshine and birdsong. I decided to urge it along with a colorful ball-cap, one that bursts with blooms in spite of its declaration of grim reality. Cancer sucks, and the buds beginning to emerge on the trees make my heart sing. Both of these things are true.

If you can’t tell, the flora on my cap are of my own creation. A sweet Agnes Scott College classmate of mine sent me the undecorated cap several years ago when I was first diagnosed, and after that first round, it got tucked away in a closet. When I found it recently, I decided to give it a spring makeover with some fabric markers. Along with the flowers, I included a couple of lines from a favorite poem, “The Peace Of Wild Things,” by Wendell Berry, which captures so beautifully one of the reasons why I am eager for milder days and the access to the natural world they grant:

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.

Yesterday was blue and balmy; today the skies have thickened and the breeze blows crisp. A cluster of golden daffodils, seemingly sprung up overnight, shines from a corner of the front yard. I tip my blooming ball-cap to their nodding yellow bonnets, and await the next harbinger of spring.

I rest in the grace of this world, and am free.

Losses and Lessons

Yesterday I learned that my epiglottis is not functioning properly. That sounds like the opening line to a bad joke, doesn’t it? “Epiglottis” is such a funny-sounding word. It has kind of a serious function though, and apparently–thankfully–I’m good at compensating for its shortcomings. “Compensating,” also the crux of many a punchline. I wish I were finding it easier to laugh.

We are rounding on to a full-year of pandemic isolation, and we’re all feeling the fatigue and frustration. For me the pandemic has been co-extant with an intense treatment regimen, and lately it seems like I can’t catch a break. I’m loathe to create a metaphor that demonizes felines in any way, but since I speak the language of cats fluently, the image that comes to mind is of me, clad in a sweater, and each day Kitty comes with claw outstretched to pluck and pick loose still another thread, then another, until eventually the whole garment begins to unravel.

Watch out for incoming claws…

My malfunctioning epiglottis is the latest casualty. It’s likely a long-term side effect of the radiation treatment I had two years ago, during my second recurrence. Yesterday I underwent a swallowing study (you haven’t lived until you’ve chewed a spoonful of cold beef stew, mixed with a dollop of barium, and swallowed it on camera) that showed the strap muscles in my neck are weak. I’ll need speech therapy and a set of exercises to strengthen them and get my epiglottis moving again. I was disheartened to learn I had yet another issue that needed addressing; I’d thought the swallowing study was meant to confirm and illuminate the issues with my paralyzed vocal cord. Surprise!

There’s a popular inspirational meme/poster that circulates titled “What Cancer Cannot Do.” The wording varies slightly, depending on the source, but all versions iterate the limitations of cancer, noting that it cannot cripple love, shatter hope, corrode faith, destroy peace, kill friendship, suppress memories, silence courage, invade the soul, steal eternal life, or conquer the spirit.

All pink and pretty, with flowers, too…right.

I’ve gotta confess, I have increasingly mixed feelings about this message.

Attitude may well be half the battle when it comes to fighting cancer. But that’s just it: attitude is half the battle. Battles are hard. And it’s something less than easy to stay on a steady, even keel mentally and emotionally when your body is in the fight of its life, especially when it keeps throwing you yet another left hook. Or a recalcitrant epiglottis. It’s unrealistic to expect of myself, yet I often feel like I’m letting people down if I don’t “stay positive.” Someone complimented me recently for my lack of self-pity, which left me wondering where the line is between descending into said self-pity and just being transparent about the realities of this disease. I’ve no desire to wallow, but acting as if there’s no muck to slog through would be dishonest.

Do I sound cranky? I feel cranky. I’m weary, and I’ve been struggling. So when I read about all the things cancer cannot do, it makes me twitchy. Maybe cancer cannot cripple love, but it can sure wreck your libido. It might not destroy your peace of mind, but knowing some of your own cells mutated and tried to kill you certainly disrupts it. And anyone who’s undergone chemotherapy can tell you that cancer may not suppress memories, but the treatment robs you of your ability to recall events and words most effectively.

Your brain on chemo… Image source https://www.cedars-sinai.org/blog/chemo-brain.html

Maybe it’s my inner English teacher, the wordsmith in me who demands precision of language, who trips over the “cannot.” If cancer has not conquered my spirit, it isn’t because it can’t. Lately, depression and anxiety have interrupted my days as much as the physical symptoms and side effects. If my spirit remains unconquered, it’s because I fight, hard, on that front, too. I talk regularly to a counselor, and I take medicine to help me manage the emotional fallout.

The meme borders on reinforcing toxic positivity, a form of “staying positive” that denies another’s grief or pain, that seeks to leap-frog over losses to the lessons those losses may have wrought. According to Susan David, author of Emotional Agility, “Toxic positivity is forced, false positivity. It may sound innocuous on the surface, but when you share something difficult with someone, and they insist that you turn it into a positive, what they’re really saying is, My comfort is more important than your reality.” You can only see the silver lining if you first acknowledge the cloud. And sometimes the fog that surrounds you is thick.

Cancer, and its treatment, does damage, and I grieve my losses. A partial list, in no particular order: all of my hairs, including eyelashes and brows, and all of their functions, including the facial expressiveness eyebrows provide; my voice, and thus my ability to sing along with my favorite songs; my ability to swallow with ease and thus my enjoyment of food; the strength and mobility in my left arm and dexterity in my left hand; the ability to fit into some favorite clothes due to the swelling in my upper arm; my natural breasts; all sensation in my chest; my ability to recall words; wide swaths of memory; executive functioning skills (good-bye, multi-tasking, and hello, increased difficulty making decisions); my stamina, and thus my ability to hike or run; my dignity on occasion (drippy nose and loud belches will do that for you); the ability to wear my long-awaited wedding ring (due to swelling) or most any other jewelry except earrings comfortably; general comfort and confidence in my body; easy imaginings of a long-term future for myself, my marriage, and my dreams.

There have of course been lessons, and I acknowledge those, too. I’ve definitely no shortage of writing material, though I will always hold that I had plenty BC (Before Cancer). A changed perspective and sense of priorities, in terms of what deserves my energy and time. Patience. A strong desire to be a positive force in others’ lives, whether that means telling my loved ones I care, giving more compliments, sending someone a note or gift to brighten their day, or just trying to be the person about whom the doctor’s scheduler goes home and says to their partner, “I spoke to the nicest woman today.” Keeping petty grievances to myself, and speaking up for justice. Always seeking the beauty. Letting the small stuff go. Increased awareness of my own resilience. Understanding just how much I am loved, and how lucky I am to have the family and friendships I do. Recognition that way more people are going through hard stuff than most of us would ever imagine. Kindness always matters.

Another lesson: the rejuvenating power of a good nap!

I would like to think I didn’t need to face a serious illness to learn these lessons, but it certainly has had a way of highlighting them. I value what I’ve learned, but I also have to be allowed to mourn my losses. They are real, and they hurt.

There will be losses, and there will be lessons. And I thank you, readers, for the third “L,” an act far more meaningful than the platitudes of any inspirational meme: listening.