Voice and Vaccine

Like so many others, I was awed and inspired by poet Amanda Gorman and the beautiful work she shared at President Biden’s inauguration, “The Hill We Climb.” What a gift for words she has, her performance all the more impressive for her having lived with a speech impediment. Her voice positively soared, and it was a thing of beauty to listen to and watch.

Amanda Gorman — Photo by Erin Schaff, The New York Times

I’ve been thinking about voices a lot lately, as I keep losing mine. The persistent hoarseness I’ve developed is likely a symptom of the hypothyroidism I was recently diagnosed with, that being a common side effect (or, more accurately, after effect) of the immuno-therapy regimen I was on from January through March 2020. For most of the past month I’ve sounded a bit like a Muppet when I speak, my voice high-pitched and low-powered, raspy and squeaky in turns.

The voice loss is disconcerting, eerie even, given the way that fear and anxiety have centered around my throat for much of my life. For as long as I can remember I’ve had a thing about my throat, hating any sort of touch there, barely able to sit still for a doctor’s exam, jerking away from a sweetheart’s gentlest kiss. What’s more, the key recurring feature in any nightmare I’ve ever had is my inability to speak–something bad is happening but I can’t stop it, because when I try to call out for help, I can never muster more than a weak whisper.

Graphic from houstonmethodist.org

When I was younger, a writer friend of mine postulated that my voice was the seat of my power, and that my dreams and discomfort arose from twin fears of either never finding my voice and/or the changes that might come with realizing its full potential. I myself have occasionally mused on the possibility of past lives, whether I might have lived one that made future me’s protective of my throat (French Revolution, anyone?). Now, between my voice loss and the esophageal narrowing and swallowing challenges I’ve experienced, I find myself wondering about cellular memory, what the body knows at its most basic levels, what it might predict.

I know, I know. It’s a little out there. But perhaps I can be forgiven the occasional fanciful turn. If you wish, ascribe my wild theories to the happy delirium resulting from this week’s combination of a newly installed president and my having gotten my first COVID vaccine today! I’ve never been so happy to visit the hospital, or be stuck with a needle. We’ve a long way to go, but it feels like we’re finally moving in the right direction. As Amanda Gorman so eloquently said, “For there is always light, / if only we are brave enough to see it. / If only we are brave enough to be it.”

Sometimes light shines from surprising places

When I was 22, Gorman’s age, I was still struggling to find my voice, trying to understand how I was meant to respond–as a writer and a human–to feedback on my poems such as “This shows what you can do when you get out of your own way.” It’s difficult to imagine having had Gorman’s confidence and self-possession back then. Thankfully, all I’ve lost at present is my physical voice, and with luck, the thyroid medicine I’m taking will bring it back to full power sooner rather than later. I do miss being able to project (“Herry! Get your paws off the table!”), and as a teacher and performer, I require a strong voice to function effectively. Not to mention, it took me many years to find and embrace my voice, and I still have more to say!

Thanks, friends, as always, for listening.

On Porches and Peril

Our front porch is currently under construction. We started with the knowledge we had some gutter issues, which had led to some issues with runoff, which had rotted a few isolated spots in the roof and the floorboards along the front railings. I’d hoped we’d just need a little gutter work, a few replacement boards, and some fresh paint, but that’s not how home renovations work.

Front yard as construction zone

We signed on for gutter repair and an entire porch floor replacement. That morphed into replacing all the joists supporting the floor too, since they were too far apart to meet code, and adding footers when the builders discovered there weren’t any. The rot in the porch roof, it turned out, was more extensive than anticipated, partly because there were some places in the metal that were completely rusted through, places someone who lived here before us had disguised by simply painting over them. The porch roof will have to be replaced as well.

So now we have a big hole in the ground outside our front door where our porch used to be. The builders are working diligently, but it’s going to be a lengthy process. By the time all is said and done, the only original parts of our porch will be the columns and the railing and its pickets.

The current state of the porch

The porch is our favorite room in our home. It’s what sold us–Steve in particular–on buying it. When we were house-hunting, we stopped by the empty house one spring afternoon and sat in the chairs the realtor had staged on the porch. Looking at the rolling hills and towering trees of the park that faced two sides of the house, we were smitten.

It’s unsettling to see it torn apart, even in the interest, ultimately, of repair. That’s how I feel about our government this week, too, and as often as not, it’s also how I feel about my own body in the course of treatment. It’s difficult sometimes to imagine what’s on the other side of destruction, even when that destruction isn’t unexpected; even when, as with chemo, it’s deliberate. You hope the discomforts and sacrifices will be worth it. Time will tell.

Back to the future, we hope

I’ve been around this block enough times to know that it will never be the same. However necessary the work, however skilled the reconstruction, something will be lost. For that, I grieve.

Meanwhile our days are underscored by banging, drilling, and occasionally, the soft shwush of a paintbrush’s bristles whitewashing wood. As winter slowly winds its way toward spring, I dream of warmer days, when the sounds of hammers will be replaced by the gentle creak of a porch swing, when calmer voices and haler cells might prevail, when sun-dappled shadows will dance across the painted boards once more.

Heads Up! #10: Pleated Merlot in the Snow

This week has left me alternately ranting and speechless. Between insurance frustrations, the seemingly unavoidable “this is worse than we thought and it’s gonna cost more than we planned” home renovation revelation, and the horrifying events at the US Capitol, it’s been… a lot.

So after getting my brain sampled (i.e. a Covid swab test) this afternoon in preparation for an upcoming medical procedure, it seemed like a good time to take a walk and clear my head. I kept said head warm with a new lid, this one a Christmas present from Steve, a pleated wool bucket/cloche in a lovely shade of merlot.

Sporting my new hat

I haven’t resorted to drinking any merlot yet, but I haven’t ruled it out.

The light snow we got today had stopped falling by the time I made it outside, but there was still enough white stuff on the ground to make for some pretty views across the park as the sun dropped. Not far from me, a couple pulled their happily shrieking child along on a sled, and a black lab romped through the slush, chasing a ball. I felt myself began to breathe a little deeper, a little easier.

From a distance, the home repairs seemed less daunting.

I was pleased to discover that the new hat blended perfectly with the plaid wool wrap I brought back from our trip to Scotland in July 2019. Wearing it takes me back to another gray, chilly day, one on the Isle of Skye, and a cozy showroom filled with fleece and all manner of warm, woolly items at the SkyeSkyns tannery. After shopping, we had tea and cake in a yurt, then huddled up in our Waternish lodgings to watch the play of light and rain on the loch below.

Perhaps, in another year or two, I’ll don my merlot hat and be transported back to a snowy afternoon walk followed by a mug of hot chocolate, or a quiet Christmas morning spent in flannel pjs, giggling at kitten antics.

For now, its pleats are keeping my bald head toasty on a wintry day’s walk. As I eyed the scaffolding climbing the sides of our house, I kept thinking there’s a metaphor in there somewhere. You have to tear out the rot before you can mend the roof. When you’re clearing out and fixing up, things often look worse before they get better.

Here’s hoping. May next week be a bit less eventful for everyone.

Wishes: more snow, less drama, peace for us all.

Time for a New Year

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.

Always to do’s to be done

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.

Kitty snuggles help on the tough days, too!

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.

A little artwork I created this time last year, and still true.

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.

Cheers!

Happy New Year, friends! May 2021 bring us all health, happiness, and peace.

The Heart of the Holidays: Celebrating With Intention

A recent viral Twitter thread by Canadian Mohammad Hussain recounts his observations as a Muslim who’s celebrating his first “proper Christmas” with roommates as a result of pandemic lockdown. Hussain’s observations–which you can read here–highlight the laborious, expensive, and time-consuming nature of many Christmas “traditions,” as well as how attached many of us are to those traditions, and how upset we get when our often elaborate plans are thwarted.

This year, of course, is the year of thwarted everything. I’ve seen and heard others express disappointment–and felt my own–at not being able to gather safely with family or friends, missing community events that were cancelled, feeling less connected to religious rituals that have moved online. And yet in this year’s necessary simplification of holiday gatherings and rituals I’ve also seen, and felt, something I can only describe as a kind of…relief.

What if holidays were…restful?

Steve and I didn’t really “do” Thanksgiving this year. I love Thanksgiving–I enjoy planning a menu, cooking for the people I love, running (or more recently, walking) in our town’s annual Drumstick Dash with our two grown boys, breaking out the pumpkin margaritas. This year, on top of the pandemic making it unsafe for travel and gathering–and turning the Drumstick Dash into a virtual, on-your-own-schedule 5K– the holiday fell on a chemo treatment week. The timing meant that Thanksgiving Day was one of my “quiet” days, a day when I’m disinclined to do anything other than sit on the couch and sip soup. Cooking and eating a big feast, much less walking a 5K in any form, were not on the agenda. And while it was disappointing not to see family or tuck into cran-apple pie, it was also relaxing. We didn’t have a schedule. Instead of setting an alarm and heading out into the cold first thing, we slept in. Read books. Watched some Netflix. I wrote a few notes of thanks, which was arguably more meaningful than making cranberry gelatin, as much as I enjoy the tradition, and as tasty as it is. We let go of any expectations about the day, and instead of making menus and grocery lists and calculating times and temperatures for multiple dishes to make sure everything was ready at the same time, we ate when we were hungry, rested when we were tired, and just accepted that things were different this year. It felt good.

When I saw Hussain’s observations on celebrating Christmas, I thought back to our un-Thanksgiving. Christmas is different this year, too. I’ve been struck by how many people I’ve seen post or heard say something along the lines of “This is the first year we’ve been able to have Christmas at our home,” or “It’s been kind of nice to have time to just sit and watch the fire,” or “I was actually glad not to have to….” While I’m sad not to have our boys and grand-dog here making merry, this strange holiday is giving me the chance to think about why we do all the things we do to celebrate each year, and which aspects of that celebration feel essential, and which, perhaps, are just habits born of cultural or ritual expectation that no longer serve us.

Our white Christmas–a fun difference this year!

I think a lot of us get ourselves into trouble by trying to overdo and do it all: handmake ornaments for everyone we work with AND bake six kinds of cookies and package them in cute tins AND choose photos for and stuff and mail 100 holiday cards AND wrap presents like Martha Stewart AND take the kids to see Santa and the community tree lighting and the holiday parade AND attend all nine gatherings we’re invited to (we do genuinely like all the people, after all, except cranky Aunt Mildred, but she’d be hurt if we skipped her punch and cookies)—even sometimes juggling several events in a single day. Hussain compared celebrating Christmas to having a part-time job, and he wasn’t wrong. So many of us stack event on event and expectation on expectation to the point it takes a spreadsheet (or several) to manage our holiday.

Though our calendar has felt a bit too empty this year, I haven’t missed the franticness that often characterizes December. What does a holiday look like if we let go of the “we’ve always done it this way”s and the “it’s what everyone expects, and they’ll be disappointed if we don’t”s? (And who is this “everyone,” anyway?) If you choose not to worry about others’ expectations, what sifts to the surface as most pleasurable, most meaningful? In this year when so many things are different, what do you really miss? Did anything disappear from your to-do list that left you secretly relieved? And what, perhaps, did you bring back in to play because you had time this year, time that’s usually devoted to something else that maybe you don’t enjoy as much (or at all)? When the should’s and the have-to’s and the we’ve-always-done-it-like-that’s drop out, what stays, and can we find a way to hold on to those lessons going forward?

Frankly, the belief and insistence that “it’s our tradition, so we have to do x or y or z” is a significant reason why some people are risking their own lives and the lives of others to hold large family gatherings, or attend indoor religious services, even though at present those things are dangerous. Hussain jokes about people stabbing anyone “in the neck” who suggests an alternative to accepted traditions, but many people are in fact so beholden to what they usually do that they are willing to endanger their own and others’ lives to keep doing it, global pandemic be damned.

And I get that traditions often evolve from what’s important–seeing family, for example. But maybe 2020 can remind us there, too, what the crux of the matter really is. I still remember shuddering at hearing some of my born-Southern friends describe their holiday routine: Christmas Eve cocktails at Grandma A’s, then Christmas Eve church with Grandma and Grandpa B, then a lickety-split early Christmas morning at home so they had time to drive 2 hours to open packages and have Christmas dinner at their married older sister’s, then back in time to visit their dad’s family for caroling Christmas night. It sounded exhausting. And how do you manage any in-depth individual interactions with anyone when there’s always a crowd and the day’s such a flurry? It’s also true that traveling at the holidays can be exorbitantly expensive (higher priced airline tickets and gas prices) and extremely unpleasant.

Prepping for one of several family Zoom calls

As much as I love having family near at Christmas, I wonder: would it make as much or more sense to see family at some other, less harried time of year? Isn’t it the family togetherness that’s most important, not the time of year it happens? And if there’s something you really love doing with family at the holidays, do you have to confine that activity to the holidays? I love to bake and decorate cookies with my family, but we’ve been foiled this year, first by Covid, then by the post office. I hope we’re still going to manage a Zoom cookie-decorating session. But we could also make and decorate cookies in July or September or whenever it works for us to be in the same space again, and I bet we’d have just as much fun then.

This year my penchant for dressing up in festive clothes for the holiday took a fun pandemic-friendly turn: Steve and I got matching Christmas pajamas, and spent a good part of the day in them. We missed our boys but reveled in our kittens’ antics. We decided to privilege Zoom calls with loved ones and our own relaxation over kitchen prep and bumped our “Christmas dinner” to the day after Christmas. Whatever day we have it, it will taste just as good.

Christmas morning tea in our matching pjs–cheers!

Maybe this Covid Christmas can teach us all something about celebrating with intention. Despite the year’s oddities, we’re having a marvelous holiday. We wish you many marvelous days in the year to come.

Have Yourself a Hairy Little Christmas

I’ve uttered several things in 2020 I never thought I’d say. “Wait, do you have your mask?” “What time do you want to Zoom?” The most surprising, though, is this: “I really miss my nose hair.”

I’ve written previously about how hair becomes a signifier of health (or lack thereof) for cancer patients, and during my first round of chemo-induced hair loss, I explained why I missed my pubic hair the most (something else I never thought I’d declare, much less publicly, but there you go). One of the main points of the latter piece was that, as much time, energy, and money as many of us spend trying to remove them, the hairs on our human bodies do indeed serve a purpose–beyond creating and supporting an entire hair-removal industry.

Most of the time, if you hear anyone mention nose hair, it’s in the context of getting rid of the excess by trimming it. You can even buy instruments dedicated expressly to that purpose. Before you get too zealous in said pursuit, however, you might want to read on.

One of many options to tame your nose hair

Remember the “sudden snot”? At a recent appointment, both my regular doctor and nurse practitioner were unavailable for my scheduled pre-treatment consult, so I saw another NP in the office. As I was filling her in on my history, I mentioned the “sudden snot” problem I’d developed, and told her that despite taking a regular antihistamine, it hadn’t abated.

She nodded. “Some of that is probably just your body’s normal production of mucous,” she said. “But you’ve likely lost all your nose hair, so there’s nothing there to hold it back or slow it down.”

My mouth gaped inside my mask. “Oh my god, of course!” I said. “Of course!” I’d never thought about the fact that we have hairs in our nose, that that hair is functional, and–given that my body has emptied every other known follicle since I’ve been on Sasquatch–that my alopecia would extend there as well. It was a revelation. If light-bulbs really did appear above your head when the light dawns, I would have had a full-on Rockefeller Christmas tree over mine.

As it stands, I have a full-on faucet on my face. So. I really miss my nose hair.

Sigh.

I really miss my eyelashes, too, and not just out of vanity. Eyelashes are also functional. You don’t realize how effective an early warning/blocking-foreign-object system they are until you don’t have them to signal, for example, that the edge of your mask is about to creep up and scrape your eyeball, or the edge of your headscarf about to droop into it. Then there’s the act of trying to put on eyeliner without an eyelash line to stop you from jabbing the pencil right in. If a particle of something does get into your eye, you have no lashes to grab and pull your lid out to try to help blink it away. Don’t think you do that very often? Betcha do it more often than you realize.

I also miss my eyebrows. Profoundly. That was true the first time I had chemo, too, and it’s related more to appearance than function. I’ve referred before to the research that shows eyebrows are a key feature in making us recognizable. Losing my eyebrows–far more than losing the hair on my head–makes me feel like I’ve lost something fundamental in what makes me look like me. It feels like losing my face.

No one manufactures replacement nose hairs, but in terms of brows and lashes, there are almost as many products on the market to replace them as there are to remove those hairs less desired. (We probably need to have a longer conversation with ourselves as a species about our strange pre-occupation with good hairs versus bad hairs….) Since my face is currently a blank canvas, well, why not test out a few?

First up: eyelashes. When I was modeling, I occasionally wore fake eyelashes, the basic kind that use eyelash glue. I never found them difficult to use, and I liked how they bulked up my natural lashes, especially in photographs. Now there are magnetic lashes with tiny magnets along the lash line; you swipe on a magnetized eyeliner to which the lashes stick. Even more recently, the company Moxielash has debuted lashes that use silicone as the sticking agent.

I tried both. The liner that came with the magnetic lashes is black, liquid liner. If you think drawing straight, even lines with liquid liner is tough when you have your own eyelashes to guide you, you can imagine how many times I drew on my eyeball. And it’s nigh impossible to draw the liner or place the lashes right up against the eye (your natural lash-line is usually the guide, and fills that space). So even if I manage not to poke myself, I end up with a thin skin-colored gap that’s further highlighted by the dark liner and lashes. The clear liner that comes with the silicone lashes tones down the contrast, but the gap remains and makes fake lashes, even styles labelled “natural,” look extreme. It’s a lot of drama for a visit to the doctor’s office.

I’ve had more luck, after considerable trial and error, with eyebrows, at least if I subscribe to (and I do) the adage that brows should look like sisters, not twins. Twins are not happening. I started with a “Tattbrow” pencil, which mimics the look of micro-blading, but it’s a bit too dark. I ordered some stencil stickers but found them unwieldy. For a while I used a reusable plastic stencil and brow powder in “dark blonde” by Senna. It doesn’t really give the look of individual hairs and wears off more easily than I’d like. But it’s easy to wipe off and try again on those days when my first attempt results not in sisters but in fourth-cousins thrice removed.

Most recently, and a bit by accident, I found and purchased the somewhat inauspiciously named “Eyebrow Tattoo Stickers.” Temporary tattoos that stay in place for a couple days, they’re going to take a little trimming and some practice, but they’re promising. I also got myself some sparkly bling to play with. Might as well put the canvas to good use.

I was reassured a couple weeks ago when Steve and I watched a live-stream concert of Scottish folk musicians, and one of the women, Inge Thomson, had a face and head like mine. I don’t know the cause of her alopecia, but she is bald and sans eyebrows and lashes, and she looks fine–not alien, not weird. Lovely, in fact. So I’m trying to find ways to stop with the before/after comparisons of my own face–which is what gets me into trouble–and embrace and enhance my new look with minimal prosthetic additions.

Still, vanity is one thing, functionality another. I do miss my nose hair. This holiday season, be kind to your hairs. They are a gift, and they are doing more for you than you might imagine.

Now, please excuse me while I go find another box of tissues.

In the Only-a-Little Bleak Mid-December

There seem to be no limits to the ways 2020 can be strange. Coronavirus surge and ongoing chemotherapy notwithstanding, this is the first year since 2015 that mid-December hasn’t been marked, personally, by some kind of trauma or bad news.

Recent Decembers have been hard. In 2016 I had a bilateral mastectomy on December 12th. In 2017 I had nipple reconstruction surgery at Thanksgiving, and in mid-December the left nipple failed, which brought on cellulitis on the eve of Christmas Eve. That was the first time something in the long series of treatments and surgeries I’d had went “wrong,” and it hit me hard. In 2018 we got word on December 14th of the first recurrence; I had a surgical biopsy December 31st. Last year, in 2019, I was diagnosed again right before Thanksgiving, and we spent early and mid-December uncertain of the extent of the spread, shuttling to multiple scans and appointments, waiting for news. Treatment started the day after Christmas.

The year’s not over yet, and I don’t want to tempt fate. But I’m glad we’ve at least made it to December 15th this year without a sudden disruption to our lives. Certainly there is disruption, but as wearying as treatment and the pandemic are, neither are new adjustments. And chemo is going in the right direction, which is something to be glad of!

A lot of people find the winter holidays difficult, for a variety of reasons. I’ve been lucky; aside from my paternal grandmother’s death in early December 1994, and the loss of my beloved Tiko kitty just prior to Christmas in 1997, Christmas has almost always been a joyful time for me and my family. I love choosing presents for people, making ornaments, baking cookies. I’ve led a privileged life, and the holidays have been rich with tradition and abundance. Back when I was declared cancer-free after my mastectomy, the hope was that Steve and I would have just that one Christmas in 2016 impacted directly by cancer, and then things would return to normal–or rather, go forward, having been changed by cancer, but done with it.

Decorations ready for this year’s kitten-friendly tree

Though my mind occasionally travels toward “what if…?” it’s simply too tender, too painful to contemplate with any depth what that life could have been like, had it been granted to us. I comfort myself with the reminder that there’s no guarantee an alternative path would have been better. That’s the thing about counterfactuals. We oftentimes imagine the thing that didn’t happen, the path we didn’t travel, in its ideal form. In my case, the house would be fully painted and decorated, I’d have finished and published a book (and it would be a bestseller!), Steve and I would be traveling regularly, and I’d be fit, thin, and have beautiful hair. Okay, it is likely I’d have hair. But–life happens. It’s never going to be perfect, chronic illness or no. Fairy tales are classified as fiction for a reason, and they stop at “happily ever after” because that’s precisely the moment things get complicated, and besides, happiness is a dynamic, messy, multi-faceted enterprise.

I’m happy I’m still around to note all these mid-December anniversaries, even as it can be hard to find the festive some days. I’m happy I’ve learned to pay attention to and appreciate all the good and beauty that is present, even when times are tough and the world’s gone weird. I’m glad for silly kittens, and old-fashioned paper snowflakes, and twinkly lights on our tree. I’m glad for today’s calm and routine, whatever tomorrow may bring.

Peace to you, friends, this December and always.

Days that Count: Reflections on Advent

It’s the first week of December, which means I’ve broken out the red dining room tablecloth, I’m scolding the kittens to stop chewing the Christmas tree fourteen times a day, and each morning I clap my hands with delight to see what sweet scene is behind the numbered door on this year’s advent calendar.

Festive kitty!

I grew up with an advent calendar and an Advent wreath. Lighting the candles in the wreath was a family religious ritual, accompanied by biblical readings each Sunday that reflected on hope, peace, joy, and love. We began the cycle each year with the first Sunday in Advent, as designated by the liturgical calendar.

Our advent calendar, however, always began each year on December 1st. It consisted of a piece of plywood covered in gold foil wrapping paper, with 24 lidded boxes of all shapes and sizes–each wrapped in a different festive paper–affixed to the board. I thought it was beautiful. Each year my mother filled the boxes with small treats for my brother Todd and me, then hung the calendar on the wall in the den like a big colorful painting. The lid of each box was numbered with gold stick-on numerals, and each year we switched who opened odds and who opened evens.

There were a few boxes whose contents was predictable. A tall, flat box, number 11 as I recall, always had a funny black poodle card in it, as not much else would fit the box. Number 24 always contained a small nativity that we would set up on the box’s fold-down lid in honor of Christmas Eve. Some of the boxes would reveal trinkets we already owned, pulled from a cabinet or the Christmas box. But a few of them always held new items: a tiny Snoopy notepad with even tinier colored pencils, an action figure, a tube of lip gloss. Most times we opened the day’s box before we headed out to catch the bus for school, and even on the days when it was my brother’s turn, the anticipation and the surprise made for a pleasurable start to the day.

The pleasure of that daily ritual has stuck with me, and I have sought to recreate it for others and myself numerous times over the years. When I lived in Germany as an exchange student, the Christmas I’d just turned 17, my host sister Kristin and I made an advent calendar for my German host mama: I drew a snowy village scene, and we wrapped up tiny ornaments, sweets, and perfume samples and tied them onto the bottom of picture with ribbon. My host mama made us each a calendar, too, and my mother back home in Georgia created and sent an advent calendar for my entire German family. My host parents, sister, brother, and I–and even the family dog Lola–took turns opening those packages, which my host mama had affixed to our cellar door. My mother and I have often traded assembling or making advent calendars for one another in the past; my best effort was a series of tiny woolen ornaments that told the story of a little girl searching for the meaning of the season, which Mom still puts out each year.

Steve, sensing my fondness for the ritual, has gifted me a lovely 3D paper calendar–birds last year, and kitties this year–for each of my last two birthdays. But until this year, it had been quite a while since I’d made an advent calendar for anyone. This year I was inspired to create calendars for my three favorite guys. Our grown sons can’t be with us this holiday due to the pandemic and my high-risk status, so I wanted to do something special for them. I can’t say much about their calendars without spoiling surprises to come, but I will say I think had as much fun brainstorming with Steve, searching out items, and putting their calendars together as the boys will opening them! It’s also had the added benefit that as they open a treat each day, we exchange messages. I thought hubby Steve needed a calendar, too, so I spent a few days designing and painting a “happy memories” calendar for him, based in a snowy mountain scene. I got to think about all those memories as I made the calendar, and now I enjoy watching him open his calendar’s entry each day as much as I enjoy finding the cute critters in the calendar he gifted me.

So what is it about advent calendars that captivates me so? And why, this year of all years, did I feel especially compelled to share their joys with others?

It’s been a hard year. I mean, 2020, right? Global pandemic and the accompanying illness and economic woes, forest fires, hurricanes, fractious political climate and elections. Personally, I’ve been in some form of cancer treatment (or on pause, not knowing for six weeks if they were going to find something that worked) since December 26th of last year. Fighting cancer and being immune-compromised in the era of Covid feels like mortal threat on top of mortal threat, and it’s wearying to have part of your brain and body perpetually in survival mode. And so many holiday rituals and traditions that usually bring me joy–walking the neighborhood Parlour Tour of homes with Steve, baking cookies with my mom or the boys, spending an evening shopping and putting outfits together for a local underprivileged child, attending an ugly sweater party with friends–are unavailable, unsafe.

But advent calendars are still possible. And while some of my good feeling about them derives from nostalgia, no doubt, hearkening back to those childhood mornings of little delights, I think there’s more to it than that. Advent calendars–in secular as well as religious form–offer me, us, something that we need in this upside-down, topsy-turvy year. Advent calendars are a lesson in appreciating this moment and its (often literally) small beauties, even as they are also a lesson in waiting. They encourage a daily practice of being present, finding a moment of pleasure, taking a moment to pause and appreciate the now. But they’re also about anticipation, faith that the days will roll forward, that even as darkness falls earlier and stays longer, the light will eventually return. For me they are also about fostering relationships and showing love. When I assemble or create a calendar for someone, I think of them throughout the process, and I hope some small part of me and my affection for the recipient is present each day when they open that day’s box or envelope or card.

And, of course, there is the wonder of surprise, even in miniature: What is behind this little door? What will I discover today? Wonder, love, being present, and faith in the future: all held in a small numbered box, or found behind a tiny paper flap. That’s the kind of gift we can all use right now, the kind of gift I’m thrilled to receive and, given the chance, even happier to give.

Last year’s bird calendar, which is getting a 2020 reprise!

Growing Old With/In/Dignity

So, today is my birthday. Yay!

Last year, I celebrated a “milestone” birthday–the big 5-0, as they say–so I have a lot of friends who’ve also recently or will soon celebrate their own mid-century milestones. There’s something about milestone birthdays that brings out the denial and lamentations. “Me? I’ll be 29 again this year!” Or “I’m 39 and holding!” Or “I can’t believe I’m getting so old! Look at my chin/neck/knees/crow’s feet.” I’ve said it, too.

My 51-year-old-face. It is what it is!

The older I get, the more often I hear, “Yeah, I don’t celebrate birthdays anymore. I just try to forget that I’m having one!”

I betcha know where I’m going with this.

That last one, especially, has come to stick in my craw. We’ve all heard the axiom, “Growing old is a privilege denied to many.” The thing is, it’s true. There’s not a one of us, cancer survivor or no, who can take another birthday for granted.

Having a birthday? Celebrate it!

Aging is a gift, and it is humbling. Your body seems to begin conspiring against you: you can’t eat or drink what you used to, not without surprising consequences. You can go as hard as you did in the previous decade, but it will take twice as long to recover. And everything seems to drift down, crinkle up, or both.

Aging with cancer is especially humbling. Ever since my first round of chemo, I belch like a seventh grade boy. It happens without warning. I almost look forward to the day one erupts in class or a faculty meeting. It’s a side of me so few have seen. Or, rather, heard. And then there’s what I’ve come to call the “sudden snot.” Something in my current treatment makes my nose drip, and it happens so quickly that I end up with a long string before I even know it’s begun. I don’t have enough stamina for running with my legs at present, so my nose is making up for it.

TMI? Well, that’s one of the good things that comes with growing older–you no longer give a fig what others think about you anymore.

And then there are the memory issues. I haven’t forgotten what I wanted to say about that…though that could happen. I’m just saving that subject for another day. Really.

Beautiful birthday journal made by my mother. Have to write it down if I want to remember it, these days.

When I turned 40, I didn’t tell anyone it was a “big” birthday, because a lot of people I knew thought I was several years younger than I was, and I thought preserving that fiction was important. Now I wish I’d kicked up my heels and had a big bash. By the time I turned 50, I understood just what an incredible privilege growing older really is, and I owned it. And I plan to own it for every birthday I’m lucky enough to have for the rest of my life. And I urge you to own your years, too.

Aging is humbling. It’s not for the faint of heart, as they say. I say, embrace all its indignities and laugh all the louder for it. You’re still here. That’s the best gift any of us could wish for.

Cheers, y’all! Beer and chocolate are pretty awesome gifts, too 🙂

Birthday Girl

This is a happy story. Just keep reading.

This coming Friday, I will celebrate my fifty-first birthday. And make no mistake, though it will just be Steve and me at home with the cats, there will be a full-on party taking place in my heart.

One year ago yesterday, a Saturday, I was at The Stone House owned by Black Dog Salvage, preparing for my “Fifty and Fabulous” birthday party. We’d been planning the party for a while, and I was excited and looking forward to the evening’s festivities. But my joy was tempered by news I’d received two days earlier. On that Thursday I’d been taking part in an annual holiday craft fair sponsored by the women’s organization at Roanoke College. I had arranged my table of wares for sale: origami tea-light lanterns, notecards that featured prints of my watercolors, and a few original watercolor cards. I’d just gotten things set up to my satisfaction when I saw I’d missed a phone call from my breast surgeon’s office. I knew it was likely to be about the results of a recent punch biopsy from a red patch that had developed just above my left armpit. I slipped into an empty classroom, sat down in a desk, and returned the call with shaking hands and clumsy fingers. I wanted to know, but I didn’t want to know. I was worried.

Origami tealight lanterns

When the nurse practitioner came on the line, she asked me if I was sitting down. I pretty much had my answer in that moment. Then came the gut punch.

“I’m afraid I have some really bad news,” she said.

Wait, what? Even in my state of heightened anxiety, I felt like something was off in the way she was framing things. But it was all I could do to keep breathing. “Okay.”

“The biopsy does show breast cancer.”

Shit.

“I’m so sorry. I know you were hoping for a different result. We all were.”

Breathe, Sandee, Breathe. I asked her something about next steps, what tests I’d need. She told me they’d refer me to my medical oncologist, and I’d need scans, then likely chemo and/or radiation.

Then she said, “Unfortunately, most of the time when we see it in the skin, it means it’s already everywhere.”

Every cell in my body clanged like a fire engine heading to a five-alarm fire. No. No, no, no, no, no. We ended the call, and I walked, stunned, back to my exhibit table. I’d brought some paints and blank cards with me, and the only thing that saved me running screaming from the room was making art. I put my head down and started drawing, one tiny line after another tiny line, until they formed a flower. Then another. This. I can still do this.

One line after another

I kept it mostly together until I delivered a pack of notecards to a colleague I knew, though not well, on my way back to my office. She asked how I was doing, and the dam broke. She sat with me in a back room until I calmed down, then I headed to my office and on to a scheduled hair appointment. I cried to my hairdresser, who is a wizard with both hair and human. How on earth was I going to get through my party? I didn’t want it to become all maudlin and weepy. I wanted it to be a celebration. In many ways, perhaps, I needed to celebrate more than ever.

Steve was traveling on business and driving back from Tennessee that day, and I didn’t want to upset him and then have him be on the road, so I held off calling him. My parents were scheduled to arrive late that afternoon. I expected to burst into tears the moment one of them put their arms around me to hug hello, but it didn’t happen. And then something shifted in me, and I didn’t want to be the daughter with cancer. I just wanted a nice, normal afternoon, pleasant conversation, party talk. At some point I decided I would hold the news unless or until one of them asked me directly about the biopsy. That didn’t happen until after dinner, shortly after Steve came in, when we were all sitting in the living room together. My mother asked if I’d ever heard back about my test. I whispered–all I could manage, suddenly–“Yes. Yes, I did.”

November blooms–seeking the beauty

I’m still angry about the editorializing that framed the report–you don’t tell a patient “I have really bad news,” which essentially tells them “be scared” and adds to their trauma. Using I-language, something like “I’m sorry to have to tell you that…” helps the patient understand it’s not good news, but doesn’t impose emotions on them. And it was way out of line that I was told skin metastasis is often a sign of widespread disease. It was pure speculation, terrifying, and utterly unhelpful, as neither I nor my doctors could confirm or deny where the cancer was or wasn’t until I had more tests. Because of that statement, I had to do the extra labor of carrying that possible story around while I waited to know. One of the most important aspects of self-care you can exercise as a cancer patient is to distinguish what you know from the stories you might tell yourself about what you know, and all we knew was that I had a small patch of cancer in the skin above my left arm. That news was hard enough to hear without the commentary. We would later find out that it wasn’t everywhere, only in the skin and a few nearby lymph nodes.

But I was talking about celebrations, and I promised you a happy story. As my parents, Steve, and I sat in the living room that Thursday night, processing, after I’d answered my mother’s question and we’d all shed a few tears, Steve asked, “So, is the party still on?”

My answer: “Hell, yes, the party’s still on!”

And it was. We didn’t share the news outside of family ahead of time so we could focus on fun. And it was fun, and fabulous, full of friends and laughter and family and cupcakes and music and dancing. There were a couple of toasts, and as Steve spoke his, I looked around the room at all the people who’d filled my life and heart with so much beauty and joy. And in that moment, I knew something important.

I knew that I had loved, and I had been loved. And I would keep loving and being loved. And whatever else I would or wouldn’t do in my days on this earth, that was the deepest, truest, most wonderful gift. That was my story. That alone makes mine a life well-lived.

Then we all raised our glasses, turned up the music, and danced.