breast cancer – Page 2 – Still Life, Beyond Cancer

The Good Enough

March 20, 2021Sandee McGlaun

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

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

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

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

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

A new spring wreath and fresh white pickets

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

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

Socking It to Cancer: In Praise of Silliness

January 30, 2021January 30, 2021Sandee McGlaun

Yesterday the Book of Faces kindly reminded me that it was two years ago to the day that I kicked off (hee hee) wearing silly socks to treatments as a way to cheer myself through the process. I had been diagnosed with my first recurrence at the time and was beginning a six-week-long course of daily weekday radiation treatments, alongside which I also took a chemotherapy pill. There was plenty of opportunity for lots of silly socks!

The sock idea was serendipitous. The ultrasound that revealed the cancer took place in mid-December, and I’d just found a pair of Christmas socks that made me giggle–black and white cats wearing red scarves, their faces positioned so that they could peer over the tops of your boots, with little shaped pink ears for accents. The few pairs of silly socks in my bureau at the time were either cat- or holiday-themed (sometimes both), and though I’d never really warmed to the trend of wearing novelty socks as a visible fashion statement, the prospect of peekaboo cats made me smile at a time when smiles were in short supply. So I bought them and donned them and posted a photo (pictures or it didn’t happen) while we were waiting for test results.

It wasn’t until I received a package with three additional pairs of silly socks from my mom, though, that the idea of wearing silly socks to treatment really took root. She’d seen some colorful happy face and floral socks at her local drugstore and thought them cheerful, so she packed up three pairs with an encouraging note and sent them to me. The lavender in the happy face socks matched my radiation mask, so I decided I’d wear them the first day of treatment.

The lavender smileys faced my direction, too!

Then, I started thinking more about socks: how most people wear them most of the time, but they’re often covered by shoes or boots or pant legs. Present, but invisible. That got me thinking about how so many people face challenges–illness, loss, pain, grief–that are invisible to others. Wearing silly socks seemed a way not only to cheer myself up throughout treatment, but also to honor the unseen battles so many others face daily. I decided to call them #sillysocksforstrength and invited others to join me in wearing their own silly socks, in honor of all those fighting battles unseen, on #funsocksfridays.

I was–and still am–overwhelmed by how many people wore socks on Fridays, and even more so by the many gifts of socks I’ve received. I think I may well have the best curated collection of silly socks anywhere! My collection is wide-ranging. It includes lots of cat socks, both with and without messages. Next in the sock drawer are the other animal socks, bird socks, ladybug socks (my family nickname), and magical creature socks (yay for unicorns and mermaids!). Perhaps unsurprisingly (and a little embarrassingly?), I have an arts and literature category. Then there are the role model socks that feature people like RBG and Wonder Woman, cheeky message socks, bright florals and stripes, and socks for different holidays. I still wear silly socks not only to each treatment, but almost daily. The socks themselves make me smile, and the kindness and care they embody gives me strength.

I’ve also seen some of my friends gift silly socks to others they know who are having a difficult time, and it makes me happy to see the practice spread. I’ve gifted several pairs myself. In many ways the best part has been seeing other people have fun with their socks. Silliness is underrated, and I think we should all embrace being silly more often. It’s a tough world out there, and a little spot of joy on your feet is an excellent antidote.

Here’s to #sillysocksforstrength! May we wear them, may we share them, may we smile whenever we see them. Sock on, friends!

Voice and Vaccine

January 22, 2021January 23, 2021Sandee McGlaun

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.

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.

In the Only-a-Little Bleak Mid-December

December 16, 2020January 9, 2021Sandee McGlaun

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.

2017 weekend in DC
2016
2019
2018
2017

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

December 4, 2020December 4, 2020Sandee McGlaun

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.

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

November 27, 2020Sandee McGlaun

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.

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.

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

November 24, 2020November 25, 2020Sandee McGlaun

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.

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.

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.”

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.

Heads Up! #9: Joy in a Mauve Cloche

November 13, 2020November 14, 2020Sandee McGlaun

Today has been a good day. In fact, it’s been a good week. I had this week off from treatment, so I’ve been busy creating, writing, and organizing. We’ve had a couple of sunny days, which energize me, and some rainy days, which somehow make my afternoon tea taste even better.

It’s been oddly warm for November, but today began to feel like Fall again. So it seemed like a good time to break out a hat and renew my running “Heads Up!” feature, which I started as a way to get some practical use out of my vintage hat collection, as well as find a bright spot in being bald (and not just because my head is shiny).

Modeling the cloche

Today’s hat, though it looks vintage, is actually a newer acquisition, purchased in 2018 from Bonnet, a lovely millinery shop in Portland, Oregon, whose brick-and-mortar store, sadly, has since closed. The hat looks delicate and feminine, but it’s sturdier than it appears: it was made to stand up to rainy Portland winters. I love the combination of the cozy, sueded fabric with the jaunty striped grosgrain ribbon. I call it “mauve,” but that’s not quite right: it’s a warm, rosy lavender that makes me think of winter sunsets and stormy summer skies.

Speaking of jaunty, I must confess that it wasn’t only the hat that compelled today’s photo fun. Take a close look at the pattern on my pants. It’s called “catstooth” (the feline answer to houndstooth, made by Betabrand), and my pants have been making me smile all day. If you gotta wear pants, why not have some fun with them? (I recognize that in the era of Zoom, not everyone has to wear pants, but…most of us have to leave the house at least occasionally.)

And speaking of things we gotta wear: masks, friends. Something else we might as well have a little fun with, while we take care of each other.

Who says masks can’t be fashionable?

I have a lot of fun with clothes. Some folks may think I have too much fun with them, that dressing up during a pandemic when I’ve no where much to go is silly, or that playing with style is a shallow pursuit. But being creative with clothes harms no one and it brings me joy. If I’ve learned one thing in the past four years, it’s that you can never have too much joy. Seize it where you find it, and spread it whenever you can.

I got lots of grins from passersby while I was out taking pictures today. And I just grinned right back.

Finnspiration! Finn approves of my catstooth pants 🙂

Thank You, Blue

November 7, 2020November 8, 2020Sandee McGlaun

Today is a good day. A grade-A, blue-letter, amazing good day.

I realize not everyone feels the same way about the election results. But even if you don’t, perhaps especially if you don’t, please take a deep breath and keep reading.

Thank you to those of you who voted blue. Thank you for voting for my survival.

There are, of course, way more important things for which you voted, and I have little doubt that of all the things on your mind when you cast your ballot, I wasn’t one of them. That’s more than okay. You still voted for my survival, and I am still grateful for it.

Does it sound like I’m over-stating the significance of this election to me personally? Allow me a little personal historical contextualizing.

The timeline of Trump’s time in office has paralleled the timeline of my battle with cancer. That parallel, however coincidental, has impacted my struggles directly. I was first diagnosed with triple negative breast cancer in June 2016. At the time the US was wrapping up primary season, getting ready to select presidential nominees, and in July 2016, each party chose their candidate. Like many–including many Republicans at the time–I could scarcely believe Trump had been selected. The presidential campaign only got more vitriolic and surreal as it progressed.

I finished that first round of intense chemotherapy in October. I was scheduled for a mastectomy in December, to be followed by radiation and later reconstruction surgery. The prospect of the first female president being elected was a bright spot in an otherwise extremely difficult autumn.

And then the unthinkable happened. Though Hillary won the popular vote, an ill-spoken, misogynist, xenophobic TV personality eked out enough votes in the electoral college to take office. I cried that night, and more than once in the days after. Given my personal challenges at the time, I needed hope. For me, Trump was the opposite

The four years that followed have been tough. I’ve had two recurrences, the most recent diagnosed in November 2019. The immunotherapy I was on for several months stopped being effective in March 2020, just as the novel coronavirus emerged as another threat. A new chemo drug received FDA approval in April, and fortunately I was able to begin receiving it, but one of its primary side effects is low white blood cell counts, placing me in the high-risk category were I to contract COVID-19.

So. I’m over here, fighting cancer, fighting to stay safe from a global pandemic, fighting to retain some optimism about not only my personal future but also the future of the country and the planet, and meanwhile we have a president in office who is anti-science, anti-mask-wearing, and anti-environmental protections. His lack of leadership contributed to the spread of the pandemic (which also damaged the economy). His administration wants to take away health care options that could leave those of us with pre-existing conditions without care (or send us into bankruptcy trying to get it) without offering anything better.

I could go on, but the bottom line is this: I am alive right now, and have a prospect at a future, because of FDA-sponsored clinical trials, a.k.a. science. I can only stay safe in my immune-compromised state if people recognize the pandemic is real and take precautions, including masking up. I will only be physically and financially secure going forward if I have access to health care that does not deny me care because of pre-existing conditions. And I can only hold on to the hope, strength, and optimism I require to keep going if I believe there is something better than the past four years, and that the majority of my fellow citizens want that better world for themselves and for one another.

The personal is always political, of course, and vice versa. From where I stand, if you voted for Trump, you voted against my survival. As much as I’ve gone through to stay alive these past four years, you’ll forgive me if I don’t find that one easy to stomach. If you voted for Biden-Harris, you voted for my, and many others’, survival. You voted for science. For leaders who model mask-wearing, who will listen to the CDC. For access to health care. Not to mention: For civil rights. For truth. You voted for life.

There’s so very much hard work to do yet. So much we as a country must grapple with, so much healing we have to do. This election was just the first step. But oh, how it matters.

Thank you, from the depths of my grateful blue heart.

The Lay of the Land, Autumn 2020

November 4, 2020November 5, 2020Sandee McGlaun

Hello, friends! It’s been a while. There’s much to tell you, so I’ll jump right in. Lots of wonderful things have happened since I last posted in 2017, but I am sorry to report I’ve had not one but two recurrences since then. We discovered the first one in December of 2018, in lymph nodes just under my upper port scar by my right collar bone. I’d actually found a bump in July of that year and thought (hoped) it scar tissue, then asked my GP about it in September. She ordered an x-ray (what I needed was an ultrasound, but I didn’t know that) and said all was fine. It wasn’t until my December oncology check-in that I had an ultrasound and surgical biopsy, and I re-entered treatment from January to May 2019.

At Stirling Castle in Scotland, July 2019

My husband Steve and I took a wonderful trip to Ocracoke Island in late May 2019 and had an amazing adventure in Scotland in July. In late October 2019 a small rash appeared just above the crease in my left armpit, and I started having issues with lymphedema again. A biopsy in late November confirmed that the cancer had metastasized to the lymphatics of my skin, and I re-entered treatment the day after Christmas, December 2019.

I wrote about the first recurrence on a Caring Bridge site; I was teaching and working through daily radiation, and I wanted to be able to give updates without feeling like I had to be “writerly.” If you are interested in the details of that time, please look me up there. When the cancer returned again late last year, I was so overwhelmed and sad that all I could muster was writing in my journal, for myself. Honestly, I think I was tired of this being the story I had to tell. To complicate matters, a couple of months into treatment (a combo of immunotherapy and Abraxane, a new form of Taxol), along came the coronavirus. There’s been a lot to process, and it’s only been in the past few weeks I’ve felt able and desirous of opening that process back up to others. I hope sharing my story is helpful, especially now that so many are faced with health challenges and the deep uncertainties they bring. So, here we are.

A recap of this latest round: as the coronavirus pandemic intensified in the spring, we discovered through a CT scan on April 15^th that the immunotherapy I’d been on since late December wasn’t working as well as it needed to; the cancer had spread to a few additional lymph nodes. That was a big blow. I received no treatment for several weeks while we waited on some test results that could give us insight into other treatment options. One of the hardest parts about the current recurrence is that, as my oncologist says, we have a front-row seat: with the cancer being in my skin, I could see it, while we waited, as it progressed across my chest and down my abdomen. I began to experience increasing pain and swelling and began having problems swallowing, leading to several endoscopic dilations. It was all terrifying.

I had a consult with my oncologist the first week of May to discuss the test results and next steps. Because of the coronavirus, only patients were allowed in the cancer care facility, so Steve could not accompany me. I shook with anxiety. I can always tell if the news will be good or bad by my oncologist’s demeanor when he enters the exam room. That day he entered smiling and appearing almost…chipper? Steve was on speakerphone. “You seem cheerful,” I said to Dr. K. “Why are you so cheerful?” “I am,” he replied. The FDA, he said, had just granted expedited approval to a targeted-chemotherapy drug that had been in clinical trials for the treatment of advanced triple negative breast cancer. The approval had been given on April 22^nd, little more than a week prior. It was particularly miraculous news given that the test results we’d been waiting on hadn’t turned up any good options. But I could start the targeted chemo drug sacituzumab govitecan-hziy, which they’d come to call “Sasquatch” acround the office, within the next two weeks.

My first dose was on May 20^th, coincidentally the day Steve and I adopted two black-and-white kittens who we named Herzchen (German for “little heart,” as he has a heart-shaped spot on his back) and Finn (after Huckleberry, as Finn is a bit of a rogue). Herry and Finn have been good medicine, too. I’m still receiving Sasquatch, which has a two-week on, one-week off dosage schedule. It can be a beast, as it impacts three out of four weeks every month, but the side effects are fairly predictable, so I’m slowly learning to work with the uneven patterns of my days. Treatment day is always rough; I’m at the cancer center at least 4 hours and receive 7 drugs alongside Sasquatch to help with side effects. I usually feel pretty crummy that evening as my body processes the influx, then I’m powered by steroids the day after, have two down days, and then start to feel good again.

It’s a lot to manage, and I’ve lost all my hair again, including my eyebrows, which I really miss. But Sasquatch seems to be working, and every day it gives me is a gift. Conventionally, metastatic breast cancer cannot be cured, only treated into remission or no evidence of disease (NED). While that is technically still true, new targeted treatments like Sasquatch and the ongoing development of various immunotherapies are changing the game so quickly and dramatically that we simply don’t know what the future holds. Cancer, like HIV, is becoming something many people live with long-term, managing it rather than eradicating it.

It’s not easy to adjust to the idea of chronic illness, or to live in a space of such deep uncertainty, and the mental and emotional work it requires is one reason it’s taken me so long to write publicly about my experiences. I remind myself that we all live with that uncertainty every day, even if most don’t have constant reminders of it. And COVID-19 has now shifted mortality to the forefront of many people’s experiences. The pandemic has added a whole other layer to my own processing, but that’s another essay for another day.

Celebrating our fifth wedding anniversary on Ocracoke

I have several things going for me—the cancer, though it’s metastasized, is still pretty much contained in the lymphatic system. The science keeps staying just one step (one week!) ahead of me, and new treatments keep emerging. I have an incredible support system and one heckuva smart medical oncologist heading up my health-care team. All things considered, I feel good. I’m cuddling kittens, making art, and writing again. Steve and I celebrated our fifth wedding anniversary in September with a trip to the beach, and I’m on sabbatical currently and finally getting rolling on some creative projects. It’s not always easy, but it’s a beautiful life.

I haven’t, at this point, decided on a regular blog schedule, and I’m cutting myself some slack on that “writerly” thing. I hope to post again soon. Until then, be well, wear your mask, and safe travels through this unpredictable world.

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