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.