Catching Up

I’m a few days behind my normal posting schedule this week. I got the second dose of my new treatment regimen on Wednesday, and while the side effects are milder than the previous infusion, I still spent a couple of days feeling less than awesome. But things keep rolling along, as they do. A few updates:

  • It’s been about six weeks since I got the injection of Restylane in my left vocal cord. It definitely strengthened my voice, which is nice. It also seems to have triggered a tickle that sometimes makes it hard to talk without coughing. That irritation comes and goes, but it is nice not to feel like I sound like a Muppet all the time.
  • I’m still undergoing swallowing therapy, and I had another endoscopy and dilation. The consensus is that lymphatic fluid build-up and fibrotic tissue in my chest and neck are contributing to both issues. My doctors are concerned that I’m not managing to squeeze enough nutrition through my restricted esophagus, and the gastroenterologist doesn’t want to keep dilating me only to have external pressure narrow things again. So on Tuesday they’re going to place an esophageal stent, to remain for four to six weeks. I’m a bit anxious about it, but I do need to eat more, so I hope it will help and not be too uncomfortable.
Wrapping in progress
  • Meanwhile, my left arm is currently mummified, wrapped in a multi-layer compression wrap my lymphedema therapist recommended and showed me how to do. I’ll continue that for about two weeks. It seems to be helping, softening the fibrosis in my arm and moving some of the fluid. Hooray! Sadly, now I’ve got some additional fluid backup in my neck, so I’m trying to stay on top of that with manual lymphatic drainage massage. Some days it feels like I’m playing Whac-a-mole.
  • I seem to be growing some hair back! My oncologist thinks I may lose it again, but we’ll see; it didn’t fall out the first time I received the two chemo drugs I’m on now. I have a fuzzy old man’s head at present.
Check out that peach fuzz!

My new regimen consists of two chemo agents, carboplatin and gemcitabine, and an immunotherapy drug, pembrolizumab. I’ll receive four rounds total of that cocktail, each three weeks apart, and then undergo a scan, with hopes that we can then move to an immunotherapy-only infusion. Despite the side effects, my body does feel like it has an ally on board. It’s hard to explain, but the pain I was experiencing has lessened, so I’m hopeful the drugs are in there kicking some cancer butt.

I don’t really have any philosophical musings to offer today, for whatever they are worth. I’m going to sit on the porch, drink some tea, and call my dad. And at some point, with hubby Steve’s help, de-mummify and then re-mummify my arm. Wishing you a good wrap-up (hee-hee) to your weekend.

I think of it as my zombie arm

Old Friends, New Memories

My dear friend Sara is visiting this weekend, so I’m focusing on enjoying her company. We first met in 1993, shortly after we’d each graduated from our respective colleges. For many years we were able to meet up at least once a year for a visit–we took the photo we’re holding below during an outing to Six Flags over Georgia in the early to mid-nineties. But it’s been a while, so there’s much to catch up on! We’re taking advantage of our vaccines and renewing our tradition.

I’ll be back next week with a longer post. For now, I’m going to focus on recalling old memories and making new ones, and sharing lots of laughs. Cheers until then!

One Thing is Certain

We need to talk about death. Not mine, which isn’t imminent, as far as I know. But generally, as a society, we’re really bad at talking about death, which is a bit ironic, given that it’s the great common denominator, the only certainty.

Are you uncomfortable, reading this, hearing a cancer patient raise the specter of death? Is your first impulse to want to reassure me, change the topic, tell me I’m going to beat this and it’s not something I need to worry about? If that’s your initial response, I urge you to pause and take a deep breath. And not so much for my sake, but for the sake of all the cancer patients you might encounter in your life. Because I can almost guarantee that anyone who’s ever had a cancer diagnosis, of any kind, has confronted thoughts and feelings about death. The word “cancer” has a way of foregrounding one’s mortality, even if the diagnosis isn’t immediately life-threatening. And you don’t do anyone who’s in that space any favors by shutting down the conversation with well-intentioned reassurances, however unlikely death may seem or how uncomfortable the subject makes you. People need space to be with, and share, their thoughts and feelings about death. It does, finally, come for us all.

Glasgow Necropolis, Scotland, 2019

I have three specific fears about death. First, I worry about the pain my death will cause the people and creatures who love me. It makes me especially salty at the universe that my husband Steve, who lost his first wife to MS, might have to face losing a spouse a second time. Neither he nor my stepsons should have to go through that. I worry about the impact my early death might have on my parents, and my brother’s family. My friends. My cats, who I’m afraid would be confused were I suddenly absent. I’ve always been a pleaser, and I really don’t like the idea of being the source of hurt and grief for anyone.

I also fear experiencing physical pain. Cancer isn’t known for being a fast, painless way to go, so if that’s what takes me, I can only say I hope I have access to lots of good drugs.

My third fear is that I’ll depart this earth with dreams unrealized. I really would like to get my act together to turn all this writing I do into a book. I’d like the gift of holding a book with my name on it in my hands before I die. You’d think that would mean I was working diligently toward that goal every day, but focus and energy aren’t always easy to come by. And the other thing that’s kept me from realizing that dream all these years–fear of failure–hasn’t magically disappeared with my diagnosis. So I’m still working on it.

The New Yorker, Carolita Johnson

I suspect my fears are fairly common ones, shared by many.

I’m not sure if I fear death itself. I know many people are comforted by specific beliefs and visions of an afterlife, but if I’m completely honest with myself, the only thing I can say truthfully is that I don’t know what happens when we die. I know that matter never disappears, only changes form, and so the energy that is me will continue on in some form. Is that a soul? I don’t know. Is there another plane I will remove to and keep my awareness of self and my identity as an individual? I don’t know. I’m not sure I’m even attached to the idea of maintaining a singular identity after death. Maybe it’s more like what The Cryptonaturalist on Facebook describes in a recent post: “We could name each individual raindrop and then mourn its loss when it reaches the sea, but we understand that the water was neither lost nor diminished by rejoining the vastness from which it came.”

Don’t get me wrong. Mourning someone’s death is natural and necessary. And it makes me sad to think about the prospect of leaving the people I care about, to contemplate a world without me in it. While I don’t like the idea of being the source of anyone’s grief, I hope I’ve had enough positive impact in my small circles to think such a world would be at least a little bit diminished by my absence. But an exit is inevitable.

If there’s a heaven, Roscoe will be there.

I do like the idea of an afterlife in which I would get to see my beloved Roscoe kitty again. And Tiko, Eliza Jane, Bliss, Lola, and Imoh, not to mention the cats and dogs of my youth. That indeed sounds heavenly. In recent years I’ve thought a lot about reincarnation. Something about the concept makes sense to me. Sometimes I think there are a certain number of souls in the universe, and they reincarnate to inhabit different physical beings through those beings’ lifetimes–but there are more physical beings than souls, so not every human or creature has a soul. That would explain why my cats have always seemed deeply soulful beings, while some of the humans I’ve encountered act soulless and cruel.

If someone you know has cancer–terminal or not–and they raise the subject of death or dying, please: let them talk, and really listen. Needing or wanting to talk about death does not mean that someone is assuming they’ll die soon, that they want to die, or that they’ve given up. It means they have complicated thoughts and feelings they want to process. It means they recognize that death is part of life. It means they trust you enough to be vulnerable with you. Stifling the conversation does not stifle their fears or concerns; it tells them you cannot or will not be fully available to support them when they’re wrangling with the big questions.

It shouldn’t be awkward or uncomfortable for any of us to talk about death. The unknown is scary–it scares me. But the best way I know to manage a fear is to face it. And that’s always easier when someone you care about is standing by your side.

No Comparison

During our recent trip to the beach, I found myself more than once getting caught up in comparative thinking. We had a lovely visit to Ocracoke Island, where we stayed in a house we particularly like for its large screened porch that overlooks the marsh across the road. Granted, the first week was chilly, with one full day given over to rain. But we added layers and walked on the beach anyway, and by the start of our second week, the wind had largely calmed, the weather warmed. We spent a couple of days parked under our sunshade, reading and relaxing with toes in the sand. I found several kinds of seashells I’d not found before, and we explored the beach at the northern tip of the island, which was new to us. We took in three gorgeous sunsets over the sound, ordered takeout from some of our favorite restaurants, spent an afternoon visiting our favorite shops and galleries, and napped generously.

Sounds wonderful, yes? It was, taken on its own terms. But it was hard not to compare this trip to previous ones. I missed being able to walk for miles on the beach without it utterly exhausting me. I missed wearing some of my favorite beach clothes that no longer fit over my swollen arm, and having the strength and mobility to kayak in the sound. I missed being able to fully enjoy the island restaurants’ delicious food because of my swallowing issues. Some of the losses are the result of the pandemic–we used to enjoy getting dressed up and going out to dinner, but we felt like that was still too risky. And some of the activities we’ve participated in, like the annual Fireman’s Ball and local ghost tours, were cancelled or discontinued because of covid.

Ocracoke sunset

“Comparisons are odious”–the phrase, according to the Oxford English Dictionary, has been in use since the mid-15th century, and has appeared in works by Cervantes, Christopher Marlowe, and John Donne. “Comparison is the thief of joy,” ascribed to Theodore Roosevelt, is another aphorism that cautions us against making comparisons. Yet research by social psychologists Summerville and Roese found that “more than 10% of daily thoughts involved making a comparison of some kind.”

Though it’s hard not to think back wistfully on good times–and I think necessary and important to grieve those losses–dwelling on previous trips robs the most recent of some of its joy. I grow envious of my past, more innocent self, the self who trusted her body, who took her basic health for granted, who never could have imagined an entire globe held in thrall to a virus. Lately I’ve also found myself more and more envious of people who (appear to) have their health, posting photos of themselves on social media hiking, running, working out. Do they know what a gift it is? Those who are casual about covid make me wonder. Of course, regardless of how active and healthy someone may appear online or elsewhere, I can’t really know what’s going on in their life unless they confide in me directly and intimately.

Pictures don’t tell the whole story–I look plenty healthy!

Which is why comparisons are odious, even dangerous. I’ve written before about what I call “diagnosis envy,” something I have experienced more than once. You hear about someone else’s diagnosis, and think, If I had to have breast cancer, why couldn’t mine have been a stage-1 tumor that only required a lumpectomy? Or, why couldn’t I have been diagnosed with something with a lower incidence of recurrence? There are some objective measures that might make one diagnosis “better” than another. Some cancers, like breast cancer, have more research dollars behind them and near-constant innovations in treatment. I myself have benefited from that. Most patients would, I imagine, prefer to be diagnosed with a cancer that can be cured, rather than only treated and managed. Some types of cancer, statistically, are deadlier than others.

But a “better” diagnosis doesn’t necessarily equate to an easier journey. The type and stage of cancer and the treatment options are only two factors that affect a patient’s experience. Someone without insurance or sufficient financial means to pay for treatment will endure additional stress, perhaps even bankruptcy. Many people have a limited or non-existent support network. Even proximity to treatment centers makes a difference–we only have to drive five minutes each way, whereas many patients commute two hours or more for each appointment. Knowing someone’s diagnosis doesn’t give me a full picture of what they are going through, so diagnosis envy is unhelpful.

Shell patterns, each beautiful in its own way

I was taken aback recently upon reading a social media post made by the parent of a teen survivor of brain cancer. Though the overall intent was good–to raise awareness about how life-saving interventions like radiation can have their own devastating consequences–one statement stopped me cold: “We’re talking about the brain here, folks…it’s not a bone or fat tissue.” The writer goes on to say that other cancers “can be” “devastating,” but the initial comparison is, well, odious. I know someone who lost her teenage son to bone cancer. And while I’m not certain as to whether “fat tissue” was meant to include breasts (breast cancer grows in ducts or lobes, not “fat”), I’ve witnessed too many women struggle with this disease to be comfortable hearing its challenges dismissed. I haven’t had brain cancer, or received treatment for it, so I won’t argue that it isn’t worse than what I’ve gone through–I don’t know. Nor do I know what it is like to endure cancer as a child. I can say this: neither suffering, nor dreams for the future, know an age.

No one wants to play in the suffering olympics, and god knows, no one wants to win. Comparisons are helpful only if they lead to greater compassion and empathy. I’m happier when I’m able to focus on the beauty that is now, and I believe it is always better to assume others need my kindness. After all, as Ram Dass says, we’re all just walking each other home.

New Treatment on the Horizon

Steve and I are wrapping up our time on Ocracoke Island. It’s been a good visit, a nice change of pace and place. Sun, sand, sea, and shells are always healing. It’s been a challenging visit in some ways, too, but that’s another post for another day. Today, some other news is foremost on my mind.

We’ve known for several weeks now, based on changes happening in my body, that Sasquatch is no longer working as well as it needs to. They call it “breaking through” when the cancer stops responding to a drug, and unfortunately, the rogue cells have broken through. That’s the bad news.

The good news is that we got the results back from a test to explore the likely effectiveness of an immunotherapy drug, and it looks really promising. A score of 10 or higher is considered good, and I scored over 50. So I’ll be starting a new treatment protocol with a combination of immunotherapy and chemotherapy next week. The original plan was to begin Monday at 8 am, but we’re still waiting on insurance authorization. Don’t ask me how I feel about insurance companies’ ability to interfere with treatment plans right now. The plan is to start as soon as we possibly can.

It’s a bit disconcerting to have Trodelvy stop working. But I keep thinking about, of all things, a caving trip I went on with my church youth group in the eighth grade. I was a little anxious that I’d experience claustrophobia, as I wasn’t fond of small spaces. But what I found was this: I was completely fine crawling, wriggling, and squeezing through the narrowest of passages, as long as I could see a way forward. The only time I panicked was when I came around a corner and the passageway appeared to dead-end in front of me. It was an optical illusion–the passage simply made a hard left, which I realized when I heard voices ahead and saw a brief flash of light from a headlamp. I made the turn, and I was back on track.

I realize there may come a time when we will have exhausted the alternatives, and I dread that possibility. But for now there is a way forward, so I’ll keep on pushing through the tight places. In the meantime, Steve and I are going to watch another sunset over the sound and look forward to cuddling our kitties again tomorrow evening. Onward!

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 appreciate novelty, but I also take pleasure in seeing and naming the familiar. I have greater appreciation for small beauties 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.