Who would I be, if I hadn’t gotten cancer? Has my fight with this disease fundamentally changed who I am, for better or worse? Would I be less compassionate, more complacent, had I not faced serious health challenges? Would I be quicker to judge, more impatient with my own and others’ foibles?
What would my marriage have been like without these early and constant trials? Have they brought Steve and me closer than we would be otherwise? Would we appreciate each other less, or more? What would it be like to be simply partners, without the added caregiver dynamics?
My mother, in response to my confession that I sometimes feel ugly, physically deformed by the changes the disease has wrought in my body, reassured me that I was still the same person on the inside, where it mattered. But am I? I don’t feel like the same person. Physically, my body is slower, of course. My brain is, too. I am more content to be, rather than always do. I’m less of a perfectionist, which has opened up new avenues to explore my art. I sometimes actually feel I see the world in a different way, as if access to the visual has overtaken the verbal.
I was always emotional, but I think I’ve progressed to moody. Broody. Cranky with pain sometimes. And there are several identities I’ve held in the past that no longer apply. I’m a foodie in spirit only now. Not much of a wine drinker anymore. No longer the one who pulls other people onto the dance floor, or the professor whose courses incorporate hikes. I used to be more of an adventurer. I’d take myself to a park, paddle around the lake. I was a marathon shopper.
Some of those identities were shifting, anyway. But one of the tough things about a serious illness is the way it whittles down your world in ways you didn’t anticipate. Whether you want it to or not, it changes you.
I’m still a crazy cat lady. I still write and create. I still cherish being a wife, a friend, a stepmom, a daughter, a sister. I like to think I’ve gained some valuable insights about myself and who I want to be. But I do miss some of those lost puzzle pieces. Like everyone else, I’ll just have to do the best I can to create a beautiful picture from the ones I’ve got.
Friends, I have a request. I’ve got another week coming where I have a medical appointment almost every day. Will you do me the honor of embracing something you love or enjoy each day, and really savoring it? Whether it’s eating a fave food, or listening to your favorite music, or calling a friend you treasure–anything. And send me some of the good vibes and joy you feel while you’re doing it. My thanks!
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.
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.
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.
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.
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.
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.
Yesterday my husband Steve and I took a short drive along the Blue Ridge Parkway, hoping to see some fall colors. My energy and mobility are still pretty limited—for whatever reason, the Taxol has settled into my knees, leaving me to creak around arthritically—so a mountain drive seemed like a nice way to get out of the house and breathe in at least a little fresh air.
The sky was clear and blue, the weather a perfect balance of sunshine tempered by a crisp, occasionally brisk breeze.
The colors this year are pretty lackluster, however.
Just driving along, looking out over the long-range vistas provided by many of the Parkway’s overlooks, there wasn’t much color to see. The rolling mountains along either side of the ridge, while always lovely in their swells and dips and graceful silhouettes, didn’t offer any breathtaking vistas of brilliant hues. Most of the mountains and valleys remained green, or had simply faded to a kind of dusty, rusty brown, without any fanfare, without any autumnal spectacle. From that perspective, it would be easy to say there was no color at all.
But every so often, as we rounded a bend and the sun shone just right, a beam filtering through the trees lit up a few yellow poplar clustered a little ways back in the under-story. A low-growing shrub dappled the roadside bank with orange here and there, if you watched carefully. We had to pull over and walk a few feet up the Appalachian Trail to spot the scarlet of a single sassafras leaf, the mottled red and gold of a maple.
Some seasons of life, perhaps, are like that. The beauty is there, it’s just harder to see. You have to look a lot closer to find it. You have to let go of your ideas about the grandeur that should be, and cherish instead the smallest offerings.
Like a quiet afternoon with the man you love, a few moments on a windy ridge with the sun warm on your face, a sliver of splendor you can hold in your hand.
I remember only a few details from my appointment with the breast surgeon the Tuesday following the MRI. I remember I wore a black t-shirt and a wraparound raw silk skirt I’d bought at a street fair some years back. She wore a simple black sheath. I remember her saying, “We’re going to get the scary stuff out of the way, and then we’re going to forget about it and move ahead.” Then she drew a picture to explain triple negative breast cancer and reassured me that the “Stage 3” was automatically determined by the size of the mass and the local lymph node involvement, that she hadn’t seen anything to make her think there was more going on. I remember shaking uncontrollably. I remember her asking, as she felt my breast, if it were possible the lump had been that hard and pronounced for long, her whispering in my ear as she hugged me good-bye, “We’re going to be hopeful and prayerful. Hopeful and prayerful.”
Despite her reassurances that there was no immediate evidence of metastasis, I would need a CT scan and a bone scan to be certain the cancer hadn’t progressed beyond the local nodes. I kept shaking, so the staff moved mountains to schedule the tests as soon as possible, three days away, that Friday. Results would likely come after the weekend.
The verb “wait” dates to circa 1200, “to watch with hostile intent, to lie in wait for,” hearkening back to the Old North French waitier, “to watch,” from the Old French gaitier, “watch out, be on one’s guard.” It takes a few centuries before the specific meaning to “endure a period of waiting” is recorded, in 1849.
Steve and I had been waiting to tell family and friends about my diagnosis until we had solid information, a sense of scope and plan. Plus, I knew announcing it to others would make it inescapably real. But it was becoming increasingly impossible to sit on the news. We were scheduled to travel to Georgia in a couple of weeks to help host my parents’ 50th anniversary party, and they’d begun asking questions about the specifics of our visit.
The noun weight comes from the Old English gewiht, “weighing, weight, downward force of body, heaviness.” The figurative sense of “burden” arrives in the late 14th century.
My parents were celebrating a milestone. I didn’t want to burden them with distraction and worry. But the uncertainties were becoming too heavy to bear alone. I remember crying through the phone call. I remember their calm, steady voices. I remember the sense of relief afterwards.
The use of the phrase “waiting game” is first recorded in 1835. Early on, it referred specifically to a horse-racing strategy for horses whose strength was speed over endurance.
Steve and I had also been looking forward to a trip to Folly Beach. We’d originally planned to leave the Friday the scans were scheduled, but we delayed our departure to Saturday. We’d make an overnight trip back to Roanoke on Monday to see the oncologist, then drive back to South Carolina and finish our week at the shore. It was the best compromise we could manage: we’d have our beach trip, and we’d have a plan.
The two days we spent at the beach not knowing whether the cancer had already spread felt like two centuries.
The evening we arrived, Steve left me to walk on the beach while he went into town to pick up some groceries. I strolled along the edge of the breaking surf, breathing in the salt air, gazing out at a distant horizon that made me feel both seen and insignificant. The sky was dark and heavy with clouds, a storm over the water. I turned around to see the sun beginning to set behind me. As it dropped behind another bank of clouds, it outlined one with a bright halo, its rays splaying dramatically across the sky. Light behind a cloud: was this hope?
The literal meaning of the verb “weight,” as in “to load with weight” is recorded first in 1747. Its figurative meaning, to load the mind with weight, appeared earlier, as early as the 1640s.
The side effects of chemotherapy are often debilitating and painful. Knowing your body will be permanently altered by surgery is disorienting, even devastating. But the waiting, all the waiting: for appointments, for surgery dates, for results, for reports, for recovery, for any piece of positive news. Ask a cancer patient, and I think many will tell you: all the waiting is the hardest part.
We got the call from the surgeon’s office Monday as we were driving back to Roanoke to meet with the oncologist: my scans were clear. You know your world has flipped upside down and backwards when “stage 3 breast cancer,” a diagnosis that left you shaking in fear just days before, takes on the modifier “only” and suddenly feels like the first good news you’ve had in weeks.
The nurse had tried to call with results late Friday afternoon. I remembered: I’d been on the phone with a delivery company when an unknown local number rang through. I’d started to hang up to answer it, but I couldn’t get a word in with the woman talking furniture. When I checked voice mail afterwards, my phone said it was full, no new messages.
The sense of “wait” meaning to “remain in some place” is from the 14th century.
Given a choice, I would not have elected to suffer through those two days of waiting and wondering. But it threw my perspective into sharp focus, gave me a fierce appreciation for the beauty all around me: the gritty give of warm sand under my feet; the spicy bite of fresh shrimp cooked with Old Bay seasoning; the constellation of freckles on my husband’s smiling face. And the sun shining out from behind a darkened cloud.
We’ll wait again, and again. And while we do, my heart breathes every gorgeous moment.
On a Friday morning in early June I kissed my husband of nine months Steve good-bye and headed to my scheduled doctor’s appointment. I was having a couple of cysts aspirated—a routine procedure for me, as I’d had benign, fluid-filled cysts making regular appearances in my breasts since I was thirty. My annual mammogram, which I’d had the week before, had been clear. I typically had a follow-up ultrasound because of my dense, and busy, breast tissue, but I’d opted out of it this time. The radiologist didn’t think it necessary, and I knew I was heading back for the aspirations, anyway. I figured it would take about an hour to drain the one or two cysts in each breast that were bothering me, and then I planned to head to the office to finish the one last report standing between me and summer break.
The large cyst in my right breast had, as they sometimes did, already calmed down on its own; I wondered whether it was even worth bothering with it. My left breast still felt swollen and tender, though, so I kept the early morning appointment.
The attending nurse and the ultrasound technician arranged me on the table, placing a pillow under my left shoulder and asking me to curve my arm over my head, lifting my chest. The surgeon joined us and asked for the location of the cyst to be drained. I pointed him to the lower outer quadrant of my left breast.
“Oh, yes, I can almost see it there,” he said. With my body contorted, the lump under the skin was nearly prominent enough to spot with the naked eye.
The doctor located the cysts, per usual, with ultrasound. I always watched the images as they appeared on the monitor next to my bed. Each breast typically featured a multitude. They looked a bit like photos I’d seen of black holes, or solar eclipses: a black center, with a clear light-ring around the edges. As the surgeon rolled the wand over my left breast, I noticed something odd on the monitor. There was a dark mass, but unlike the manifold cysts I’d seen on the screen over the years, its border was irregular, furred.
“That doesn’t have the defined outline that a cyst usually does,” I said.
The doctor kept rolling the wand back and forth, back and forth. “No, that doesn’t look like a cyst,” he said quietly. “I think we’re going to need to turn this into a biopsy.”
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Just a few nights before, my husband Steve and I had been lying in bed, talking about what a crazy, busy year it had been. We’d bought a new house together, moved and combined our two households, moved each of his two sons into their first apartments, planned our wedding and gotten married, and graduated the youngest son from college. We’d both worked the full academic year as professors, and there’d been some work-related stresses for both of us. Steve had, in fact, just started a new job with a research non-profit, while I was wrapping up teaching a three-week intensive learning course that included camping and rafting in West Virginia. Our new life together was good, but we were exhausted. “I bet we’d score off the charts in one of those life-stress tests,” I joked, and Steve agreed.
When I awoke the next morning, our conversation still on my mind, I searched online and found the Holmes-Rahe Stress Inventory, which assigns point values to significant changes (positive or negative) in a person’s life. Curious, I completed it—and scored a whopping 412 points. According to the inventory, any score over 300 increased by 80% my chances of having a “major health breakdown” within the next two years. I understood the score as proof positive that our past year had, indeed, been stressful and eventful. At the time I didn’t think much about whether it might actually predict my future.
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I went straight home after my appointment and called Steve. The doctor had completed a core needle biopsy of my left breast, taking three separate samples of the mass they’d found. In some discomfort, I decided to skip the office and work from home. I threw myself into finishing the report, then began packing. Steve and I had planned a weekend at the Peaks of Otter, a rustic lodge and restaurant off the Blue Ridge Parkway, overlooking a small lake in the valley below Sharp Top and Flat Top mountains. We wouldn’t have any answers until Monday or Tuesday, so we went ahead with our getaway.
Having the fact of your mortality plunked down in your path recalibrates perspective, turns up your awareness. We stopped on the way to the Peaks to browse art and antiques in nearby Bedford. A light breeze lifted and chuffed my hair as I rounded a corner onto Main Street. I thought: pay attention to this pleasure; you won’t have it long if you lose your hair to chemotherapy. Later, walking along a forest trail, I noticed tiny details: unremarkable mushrooms, striking patterns of bark on trees.
We tried to stay positive. I researched “benign breast tumors” on my phone, looking for descriptions of all the possible permutations that matched my symptoms. In a lighter moment, Steve looked at me with a tender smile and twinkly eye and said, “I thought of this earlier, but I wasn’t sure I should say it—I don’t mind if you have one Sharp Top and one Flat Top.” He reassured me that even if we’d known for certain we’d face this moment before we’d walked down the aisle, he still would have chosen to marry me. We’d had so little time together, and we wanted so much more.
The next morning, as we strolled the path around the lodge’s lake, we met Ranger Neas, who pulled fossils from his backpack that showed the Roanoke Valley was once an ocean, and asked us if we were familiar with Einstein’s theory of relativity and the time-space continuum. We’d asked him about trees, and ended up talking about time. Instead of understanding time as relative, he asserted, we’ve become slaves to our human construct of time and the belief that time-is-money. “But nature doesn’t do that, the mountains don’t do that,” the Ranger said. I was reminded of Aldo Leopold’s “Thinking Like a Mountain”—the mountain takes the long view, even as it understands the value of the smallest interaction. We could choose to change our relationship to time, the ranger urged. Instead of the clock being life’s measure, we could choose beauty, joy, love—the richness of the life we live. We could learn to understand, value, spend time in ways that are more meaningful.
My own relationship to fate and faith is ever-changing, but our conversation with the ranger felt something more than coincidental.
Each evening during our stay, Steve and I held hands as we sat outside on our room’s balcony, tracking the stars as they appeared to move across the firmament. We tried to describe the different shades of dark that were the sky, the water, the mountains, pondering whether reflected moonlight was silver or some other color. When I saw a single falling star, I wished, and hard.
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The call came, as promised, on Monday afternoon. The radiologist’s phrasing stuck with me: “I’m sorry to tell you, it is a cancer.” A cancer: singular, specific. It felt somehow less all-encompassing, stated that way—a thing that was, a thing that existed, not a blanket pronouncement of my fate. I was grateful for that, and for the kindness in his voice. “We’re going to fix this,” he said. “I hate it, since you’re so young. But we’re going to fix it. It’s a garden-variety—if there can be such a thing—intermediate-grade breast cancer. And we’re going to fix it.”
I hung up, cursed, cried. Steve and I walked a few fast laps around the park across from our house, amped up on adrenaline. After we’d burned off some of the shock, we decided to have dinner at the local restaurant where we’d shared our first date.
There, as the sun set, it created star-shaped shadows from the lamps hanging behind the window shades. There was still much we didn’t know. The waiting had begun.