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.

Good News, Good Medicine

We got some good news from my recent CT scan: the targeted chemotherapy drug sacituzumab govitecan hziy, otherwise known as Sasquatch, is working! The scan shows that the involved lymph nodes have shrunk significantly, 80 percent by my oncologist’s estimation. Some of them appear to be almost gone.

I have something called “stranding” and some swelling in my upper left chest and shoulder. The “stranding” is a kind of ropy tissue that they think is scar tissue from where Sasquatch killed cancer cells, radiation-induced fibrosis (RIF), or some combination of both. The same with the swelling–they think it is inflammation associated with the healing process, and/or lymphedema associated with fibrosis. As long as it doesn’t get worse, they aren’t concerned about it, especially since the adjacent lymph nodes have shrunk. It may be taking the drug a bit longer to work on some of the tumor growth in my skin, since both cancer and prior radiation have negatively impacted blood flow and the lymphatics there. Hopefully ongoing work with my lymphedema therapist will improve the stranding over time.

I believe in Sasquatch!

It is such a relief to get good news! I’m grateful every day that Sasquatch received expedited FDA approval when it did. For now, I’ll stay on the drug and continue with the same dosage schedule. My medical oncologist will get some more information about research into the efficacy of alternative dosing schedules when he (virtually) attends a medical conference on breast cancer in mid-December. After that, we’ll know more about whether and how we might change my regimen going forward.

Our silly kitties are good medicine too!

It was literally this same week last year when I had a punch-biopsy of my skin and then had to wait on the results. I was days away from a big 50th birthday celebration, and finding out the cancer was back for a third round was devastating. There won’t be a big party this year–just Steve and me at home, a small cake from my favorite local bakery, and a couple of Zoom calls with family and friends. But we’ll be celebrating this much better news, and that’s the best gift I could have hoped for!

Those of you who followed my CaringBridge blog (or are on my personal Facebook page) know that when I was diagnosed a second time, I started wearing #sillysocksforstrength to encourage myself and others who were fighting battles unseen. I still wear my silly socks, and these are the ones I chose for my appointment yesterday:

Fierce!

This third time around, I upped the game a little by adding a pair of combat boots. I still have mixed feelings about all the language of fighting and battles we use when we talk about cancer (you can read more about that here if you’re interested in my thoughts on the subject), but the various talismans of joy, silliness, and strength I’ve adopted buoy my spirits. So here’s to vintage hats, silly socks, and kick-ass boots–and good news and good medicine!

Heads Up! #9: Joy in a Mauve Cloche

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).

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.)

Teeny-tiny black and white kitties!

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.

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

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.

October 2016

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.

Masked up for you and me!

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.

My RBG Election Day homage

The Lay of the Land, Autumn 2020

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.

Back in the ring

A recap of this latest round: as the coronavirus pandemic intensified in the spring, we discovered through a CT scan on April 15th 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 22nd, 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.

Finn and Herry

My first dose was on May 20th, 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.

Getting some love from Herry

The Impossible Pleasure of Scrubbing a Tub

According to The Facebook, four of my friends have recently toured Italy, another France, still another Ireland, and one is currently posting from the Scottish Isles. At least three more just returned from or remain at the beach, and others have sojourned recently to Chicago, New Orleans, and New York. I’m loving the opportunity to travel vicariously to such beautiful and varied places, and I’m thrilled for the joy evident in their journeys.

I am equally thrilled to be cleaning out my closet.

I’m not being sarcastic. Okay, maybe just the tiniest, tiniest bit sarcastic.

But not very.

Back in 2015, hubby Steve and I moved into a new house, combined our two households into one, got married, and started a new school year—all within two months. I was one week into the 2016 summer break, Steve one week into a new job, when I was diagnosed with cancer. The Summer of Settling In we’d planned was replaced by two Summers of Treatment and Recovery. We still have unpacked cardboard boxes in more rooms of our house than not.

Having the energy to get back to tackling those boxes and cleaning the house is a profound comfort and surprising thrill. Before this past year, I’d never thought it would feel like such a massive accomplishment to be able to scrub my bathtub. Before this past year, I’d never thought about how much physical effort actually goes into scrubbing a bathtub: getting down to and up from the floor, kneeling for an extended period, bending and reaching and applying pressure. You don’t realize how many ways you use your pec muscles in everyday living until they’ve been scraped and radiated and permanently stretched over silicone implants. While I would much rather breathe in the aromas of fresh French pastries or a salty sea-breeze than Mrs. Meyer’s Lavender Counter Spray, I now understand just what a gift it is to have sufficient strength and mobility to wield a scrub-brush and push a mop.

And home projects—actual projects! the same ones I’ve been staring at for months, the ones I occasionally managed to purchase supplies for before my energy petered out somewhere in the aisles of Lowe’s—they are a source of deep satisfaction. Months ago I picked up a few cans of spray paint to refresh a couple of plant stands and a rocking chair. It felt great to finally haul (with Steve’s help) the items out into the yard a week or so ago and give them a few coats.

While I worked on the porch furniture, Steve took the design for some shelf bases he’d drawn back in the spring and put his carpentry skills to work. We still have to get at some more of those unpacked boxes to fill the shelves, but just having them in position on their handsome living room bases is a beautiful thing.

We lived in survival mode for so long, the patient and the caregiver, it’s exhilarating to return to being partners in the care and crafting of our abode. Someday in the not too distant future, I hope, we’ll travel abroad and taste fresh pasta in Italy, or sip a glass of single malt after a trek across the Scottish moors. For now, it feels pretty darn good to chop tomatoes together for a pot of chili in our kitchen, bumping elbows as we rinse the dishes, smiling at these, the simple joys of health and home

Hair’s an Update

Hello, friends. It’s been a while. 🙂

I’m glad to say my hiatus is mostly a result of lots of good things going on, combined with an awareness that I still need to apportion my energy. My June reconstructive surgery went well; I’m overjoyed to have soft-ish implants in place of those bricks they call tissue expanders. My hubby Steve and I had a nice beach week at Emerald Isle, and I returned to work at the beginning of August, where my colleagues have been welcoming and supportive. There’ve been some hard things, too. We lost our sweet dog Imoh suddenly and unexpectedly to kidney failure in July. I have one more minor surgery to go yet, chemo brain is real, and I still have to do some combination of physical therapy, yoga, and/or self-massage daily to address range-of-motion limitations and prevent lymphedema.

That last is the other reason I’ve been writing less: now that I’m back at the office, spending a lot of work hours at the computer, my neck and shoulder lock up within a few hours. I have to ration my desk time, a frustrating scenario for a writer. I like to think my tales here do some good, that they offer a kind of window into a world that too many of us have (or will have) a need to understand. And I fear that because I stopped posting, I may have reinforced the idea that the cancer story ends when treatment is done and the rogue cells are vanquished. I (along with every other survivor) probably wish more fervently than anyone that that were true. I would love to “get back to normal.” But I’m still trying to figure out what “normal” looks like.

Consider: at the last check-up with my medical oncologist, I teared up talking about some trifling symptom—a headache, a knee that kept popping—that had worried me briefly. He nodded, and said “After what you’ve been through, for a while, everything that happens to and with your body, you’ll think— ‘It’s cancer.’ That’s normal.”

Process that for a minute. That’s normal.

It’s hard, then, to know what to say when you get an email that includes a genuine, well-intentioned “hope you’re feeling 100%.” It feels cranky and self-pitying to reply, “Well, actually, my doctors keep reminding me that it takes 18 to 24 months after the last major treatment or surgery to get back to baseline.” Or what to think when a colleague asks “How are you? Really, how are you?” and when you begin to answer honestly—you’re good, but still have another surgery ahead and some big decisions to make—she interrupts and says, “But you’re here, you’re good, you look great, you’re healthy.” More than once I’ve felt chastised, like I’m supposed to be so grateful to be alive and cancer-free, I’m not allowed to have any other feelings about the losses I’ve endured. Or if I do, I’m not supposed to talk about them.

The messy truth is that oftentimes people don’t really want to know the messy truth.

I think these kinds of responses are motivated by the same basic impulse: people want a happily ever after story. They want it for the person who’s been ill, because they sincerely care about that person and wish them health and happiness. But they also want it for themselves, because it’s reassuring. If my mortality no longer seems to be under immediate threat, they aren’t reminded of their own when they see me. None of us has to think about just how close we stand, every day, to the brink.

Maybe that’s why my still-short hair confuses and unsettles people. After chemo finished last October, my hair began to grow back by late December, but remained somewhere just shy of peach fuzz until February. As it filled in, people commented, “Your hair’s really coming back!” My returning hair was seen as a proxy for restored health. When I finally had enough for a haircut, I opted to keep it pixie short. With my range of motion issues, and more surgery on the horizon, spending half an hour with my arms lifted above my head every day to style it would be painful if not impossible. It was much easier to manage it short. Besides, I thought it looked kinda cute.

But friends and colleagues, especially those I haven’t seen in a while, continue to comment on my hair growth, often with puzzlement or concern. Most know that treatment ended some months ago. There’s an unspoken question under their words: if everything’s okay, shouldn’t I have more hair by now?

I’ve come to wonder if there’s yet another reason I’ve kept my pixie. Since I don’t, nor do I want to, go around flashing my scars, it’s the primary way I have to telegraph to people that things have changed for me, permanently. That I am still processing through this experience physically, mentally, and emotionally, and I will be for a while. That there really isn’t any “getting back” to normal; “normal” is different than before, something I’m still negotiating, still learning to navigate.

I didn’t plan it that way, but I recognize now that my pixie cut is a kind of signifier. Maybe for myself, as much as anyone. It’s a reminder to be kind and gentle, with myself, and others. It’s a cue to take care of myself, to be patient with this long and often circuitous healing process.

Last year around this time, Steve, my father and I visited the first annual Sunflower Festival at Beaver Dam Farm in nearby Fincastle. It was a chemo weekend, but usually after a Friday infusion I’d have a reasonably good Saturday afternoon before the side-effects would hit hard. Sunflowers make me happy, and we had a good, but short, visit. This year Steve and I returned, and though the flowers themselves were a bit droopy due to lack of rain, it was sheer joy to stroll leisurely through the fields of their sunny faces, goofing around, sharing ice cream. Steve and I will celebrate our second wedding anniversary in a few days. For our first anniversary, we squeezed a trip back to the site of our honeymoon in between chemo treatments. I’ll happily supplant a fancier celebration with this year’s simple dinner at a local restaurant, accompanied by cancer-free body and the relative sense of peace in my heart.

I suspect that, eventually, I’ll grow my hair out, and take its color back again to the blond of my youth. But for now, if my pixie prompts me to spend less time in front of a mirror, and more time drinking in the wonders of this too-fragile world, it’s more than enough hair for me.

Photos taken at the second annual Sunflower Festival at Beaver Dam Farm, Fincastle, Virginia.

Independence Day: New Blog Title Debut!

At the party with friends Cheryl and Brigitte

Yesterday was Independence Day in the US, typically celebrated with cookouts, parades, and fireworks. Steve and I have an annual tradition of attending a pool party thrown each year by a hiking friend, Jeff, and his wife. They grill hotdogs and hamburgers, everyone brings a dish to share, and we sit outside in camp chairs (or inside if it rains) and occasionally take a dip in the pool. Jeff always takes lots of fun pictures, and it’s a great afternoon spent with friends.

At last year’s July 4th party, Steve and I were still trying to get our heads around my recent diagnosis; it was so recent, in fact, that we’d told a few of our friends, but not yet all. I had an appointment on July 7th to get my port surgically implanted, and my first chemo was set to begin on July 8th. I remember feeling strangely calm—I managed to talk with some of the friends who knew what was happening about my illness without ever crying. But it was hard to feel genuinely celebratory, anticipating a year whose few certainties included pain, grief, and loss. It didn’t feel much like freedom, of any kind.

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Rose bouquet

This year felt much different. Two weeks out of my last major reconstructive surgery, I’m doing well and feeling stronger each day. This year’s Independence Day was marked by a return to a sense of personal independence, of healing, hope, and looking forward to regaining health and strength. My friend Cheryl surprised me with some beautiful roses, a happy acknowledgment of a day that had more significance than even she may have realized. There’s still a long road of recovery yet to travel, but I’m so grateful that this holiday, my struggle was trying to get my head around just how much can and has transpired in a year. I am once again free from cancer. It feels like a whole new world.

So, in honor of Independence Day, I’m making the name change of the blog official: Still Life, Beyond Cancer. As some wise friends have pointed out, I may wish to make still another change in the future, as I continue to heal and my world shifts and changes further. For now, I think the word “beyond” acknowledges both my cancer-free state (hooray!) and the fact that the physical and emotional effects of this past year still affect me daily. I hope that continuing to tell my story helps others who are themselves survivors or who know and love survivors.

Cheers!

Survivor: sur– referring to beyond, in addition to; -vivor as in vive, life. There’s life beyond cancer, something I’m thankful for each day.

Over the next week or so I’ll be updating some of the images on the site, too, to reflect the change visually. Now that my last major surgery is complete, I hope to resume a weekly posting schedule in the near future as well.

As always, thank you for reading, and stay tuned!

And—better late than never—cheers to freedoms of all kinds, to (re)gaining independence, and to those fighting for both.