life goes on – Still Life, Beyond Cancer

Persist

July 2, 2021July 2, 2021Sandee McGlaun

Sometimes in the moments after I first wake, whether from a nap or a night’s sleep, before I shift or move any body parts, I feel almost normal. I’m not yet reminded that my achy left arm doesn’t always respond to my brain’s commands, or that the inflamed, tightened skin across my chest makes me feel like I can’t get a deep breath. I haven’t yet tried to turn my head against the pull of fibrotic tissue in my neck and shoulder, or begun to putter around on legs weakened by loss of muscle tone. For a few blissful seconds, none of this cancer crap ever happened, I feel healthy and strong, and I’m gonna get at this day and make it all mine.

Of course, I do eventually have to get out of bed.

If I could only lounge all day like Charlie…

You may have noticed that I skipped posting last week. I don’t like to be a Debbie Downer, and frankly things have been kind of tough lately. I don’t want to whine, so I’m shooting for a brief, honest update, and maybe by next week I’ll have reverted to my default optimist setting.

So, I had the esophageal stent placed. That went fine and seems to be helping, though I still have a small appetite and can only eat small amounts of food in a sitting. The doctor showed me the images of my squeezed esophagus, and it was shocking. He also drew a picture (see below). See that narrow bit below the dark scribble about the width of yarn? That was my esophagus before the stent. I totally understand now why I’d been having so much trouble eating, and why he was throwing around the possibility of a feeding tube. It’s a miracle anything was getting through.

So that was sobering. Two days later I had to go back to the hospital for a port study and possible replacement. My port is working fine, it turns out; there’s just this odd open spot in the skin over it that won’t close. All were in agreement that making more cuts into that skin would likely only exacerbate the problem. So I got stuck for two IVs that day, but thankfully no surgery.

I came out of that week feeling super puny, as I had to fast the days of both procedures, and I wasn’t exactly the queen of nutritious intake going in. So I’m still trying to regain strength and stamina, as well as conquer a nagging cough that is likely being triggered by some nerve damage in my vocal cords. I’m still having to grind up every pill I take, or suffer through the liquid form (how hard would it be to make medicine that at least tastes not-vile?) Some good news: the Restylane injection in my left vocal cord seems to holding up well.

I’ve been blue, struggling with all this, and while I’m all for honesty, I don’t really like to burden others with my troubles. I will say hubby Steve has been an absolute rock through it all, and he deserves all the huzzahs! And I don’t know what I would do without the constant joy and affection of our feline crew. I know I have many kind people rooting for me too, and for that I am ever so grateful.

Even with all the aches and pains, I’m still glad to be able to get up each day. Next week I’ll receive dose 3 of the new regimen. Wishing you a fun and safe holiday weekend!

Catching Up

June 20, 2021June 20, 2021Sandee McGlaun

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

It’s been about six weeks since I got the injection of Restylane in my left vocal cord. It definitely strengthened my voice, which is nice. It also seems to have triggered a tickle that sometimes makes it hard to talk without coughing. That irritation comes and goes, but it is nice not to feel like I sound like a Muppet all the time.
I’m still undergoing swallowing therapy, and I had another endoscopy and dilation. The consensus is that lymphatic fluid build-up and fibrotic tissue in my chest and neck are contributing to both issues. My doctors are concerned that I’m not managing to squeeze enough nutrition through my restricted esophagus, and the gastroenterologist doesn’t want to keep dilating me only to have external pressure narrow things again. So on Tuesday they’re going to place an esophageal stent, to remain for four to six weeks. I’m a bit anxious about it, but I do need to eat more, so I hope it will help and not be too uncomfortable.

Meanwhile, my left arm is currently mummified, wrapped in a multi-layer compression wrap my lymphedema therapist recommended and showed me how to do. I’ll continue that for about two weeks. It seems to be helping, softening the fibrosis in my arm and moving some of the fluid. Hooray! Sadly, now I’ve got some additional fluid backup in my neck, so I’m trying to stay on top of that with manual lymphatic drainage massage. Some days it feels like I’m playing Whac-a-mole.
I seem to be growing some hair back! My oncologist thinks I may lose it again, but we’ll see; it didn’t fall out the first time I received the two chemo drugs I’m on now. I have a fuzzy old man’s head at present.

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

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

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.

The Impossible Pleasure of Scrubbing a Tub

October 18, 2017November 4, 2020Sandee McGlaun

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.

Chair in progree

On the porch

Rehabbed plantstand

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.

Painting the bases

Installation

Mission accomplished!

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

Independence Day: New Blog Title Debut!

July 6, 2017Sandee McGlaun

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.

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.

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.

Heads Up! #7: Cozy Cobalt Felted Wool

January 14, 2017Sandee McGlaun

Like much of the U.S., we recently had snow here in Southwest Virginia. I usually welcome snow, as it tends (at least here in the South) to make us slow down a bit and refocus our attention, for a day or two, on things like nature’s beauty, play, and family. The cold inspires gratitude for the warm shelter I call home, a gift denied to too many.

Our recent snow days–accompanied by single digit temperatures–seemed like the perfect time to feature my cozy cobalt felted wool hat, handmade by artist Sandy Stanton. I purchased the hat new back in September at the Asheville NC Homecrafts store, located in the Historic Grove Arcade in downtown Asheville. There were so many wonderful hats there to choose from, it was tough to select just one (I didn’t; I’ll be featuring my second purchase at a later date…). But I was immediately drawn to the beautiful blues of this hat, its primary cobalt accented by a band and flower knitted from an ombre-dyed yarn that shifts from jade to turquoise to cadet blue, into gray, brown, and finally cobalt at the flower’s center.

I gravitate toward shades of blue in my winter clothing, perhaps as a way of harnessing and transforming the emotional blues I often suffer in cold weather and its long, dark days. When so many other colors disappear from the landscape in winter, we are left with the blues: the crisp cerulean sky that reigns over the coldest days, steel-blue clouds signaling an oncoming storm, ice’s translucent aquas, the ethereal periwinkle of moonlit snow. Beautiful in their own right, these winter hues also recall the blues of kinder seasons: the robin’s egg blue of a cloudless autumn afternoon, a pewter horizon hanging over a sapphire sea, water lapping at the azure edges of a sunny backyard pool.

Occasionally snow days are an unwelcome interruption: they frustrate routines, delay travel, cancel our much-anticipated plans. But even when the clouds confound us, the thing about snow is this: it eventually melts. The storm will pass, the roads will clear. And as the world emerges from its white cocoon, the sky above will spread its wings, inviting us once again to delight in its fair, wide, beautiful blue.

Heads Up!

Photos by Steve Prisley

∼ Beautiful, quirky hats make me happy. The “Heads Up!” series is a reminder to keep my (currently bald) head up, to pay attention to the good in the world, and to encourage myself and others facing a tough road that it’s possible to find the fun in even the most challenging circumstances. ∼

Heads Up! #6: Vintage Sparkle

November 29, 2016December 1, 2016Sandee McGlaun

I celebrated a birthday at the beginning of this week. I think I can safely refer to myself as being in my “mid-forties” for one more year. The next time candles grace a cake for me, however, I’ll have shifted firmly to the “late-forties” category.

That’s okay. More than okay, actually. Being a breast cancer patient has given me a whole new perspective on aging. Growing older–having the chance to grow older–sounds pretty darn good. Aging has its challenges to be sure; even before I was ill, it had started taking me longer to recover from strenuous hikes, or late nights with friends, than it did ten or even five years ago. But given the various losses of mobility, energy, and dignity I’ve recently endured–and survived–I know I can cope with growing old. (And in the meantime, I better understand why old-timers sometimes feel cranky.)

Though I suppose any vintage hat that has retained attitude and elegance could serve to underscore the merits of aging, I thought this one especially apt: a gray felt cloche topped by a feather detail. It appears sedate at first, but a closer look at the crown reveals a colorful medley of pink, green, and black-and-white feathers underneath fine netting. The gray brim of the hat is ringed by a satin ribbon that might, in its youth, have been bright pink, but has since faded to a lovely mauve. A round rhinestone accent, though darkened a bit by time, adds sass and sparkle.

The hat is tagged as an “Evelyn Varon Exclusive.” According to Brenda Grantland in a comment on the Collectors Weekly website, Varon was a “French milliner whose designs were so popular that they were copied in the U.S. A March 11, 1914 issue of the Evening Post Page of Wanamaker News reports that the store was offering copies of hats designed by Parisian milliners Suzanne Talbot, Evelyn Varon, Jeanne Duc, Caroline Reboux and Paul Poiret.” Grantland also claims that Varon designed costumes for the original Broadway version of Pins and Needles, but I haven’t been able to verify that claim.

In any case, it’s fun to embrace a little touch of 1914 Paris right here in 2016 Virginia. Ooh la la!

Heads Up!

All photographs by Laura Wade Photography.

∼ Beautiful, quirky vintage hats make me happy. The “Heads Up!” series is a reminder to keep my (currently bald) head up, to pay attention to the good in the world, and to encourage myself and others facing a tough road that it’s possible to find the fun in even the most challenging circumstances. ∼

Heads Up! #5: Deep Purple

November 8, 2016November 9, 2016Sandee McGlaun

It’s a big day in the U.S. of A. today: after months (years) of wildly optimistic campaign promises, sometimes baffling debates, and too many social media meltdowns, the presidential election is finally here.

A big day deserves a bold hat!

This purple velvet beauty, trimmed in a sweep of iridescent blue, green, and white feathers (peacock, perhaps?) and a wide purple grosgrain ribbon, makes me think of the femme fatale in a 1940s film noir. The brim is low and wide, dipping below the eye on one side, giving it a bit of mystery and drama.

I find it pairs well with black and a bit of attitude.

Still, its bright hue and asymmetrical fold keep it from getting too serious.

Maybe we should keep that kind of balance in mind when we’re talking politics?

The hat was made by “Wesco.” There have been at least three different U.S. companies who sported that name, though it was not clear which of them were in the millinery trade. There are a number of other vintage hats on Etsy and eBay advertised as “Wesco” chapeaux, but no one notes any additional details.

It is a hat, then, with more mystery than history. On a day that’s making history for other reasons—the first time we have the opportunity to vote for a woman as a major party candidate for president—perhaps that’s just as it should be.

Heads Up!

All photos in gallery 1 by Margaret McGlaun.

Header photo and all photos in gallery 2 by Laura Wade Photography.

Heads Up! #4: Red Velvet Day

October 21, 2016Sandee McGlaun

This rolled-and-ruched red velvet cloche is one I found at an antique store and fell in love with immediately. Its hue falls somewhere between red and pink, depending on the light, and its organic folds and pleats are full of movement, even when it’s simply resting atop the head.

The hat is finished with one wide grosgrain band that wraps and encircles its narrow brim, and a second, doubled ribbon in the same shade that gathers the pleats on the right side of the back crown. The only tag inside indicates that it was “Union Made in the U.S.A.”

Sometimes I feel a bit silly or indulgent playing with my hats. I mean, I have cancer. I should be serious, right? Every day I’m reminded that energy and time are finite quantities, so I should use them wisely, yes?

Pish. Today is the only day we have. That makes it all the more important to embrace frivolity, joy, and superfluous delights, which really aren’t superfluous at all.

This topper’s bright color and sassy cheer, by the way, make it a great hat to mark two notable milestones: the conclusion of my chemotherapy, and the advent of the autumn leaf hues that are finally beginning to appear!

Heads up!

All photos by Laura Wade Photography.

Heads Up! #3: Crossroads Hat

October 4, 2016Sandee McGlaun

I picked this cream straw hat up at an antique store somewhere along the way because its two-way arrow made me giggle. I like its wit and its honesty: don’t we all feel pulled in different directions, unsure which path to take, just flat-out confused at times?

The hat is a Betmar, a company that still makes hats today. According to Betmar New York, “Betmar’s history goes back to the depths of the Great Depression in America,” in 1933. “A partnership was formed with a skilled old-line cap maker with roots dating back to 1911 in New York. The name chosen was taken from Betty Marks, the first designer for the hat company.”

I honored the hat’s playfulness by highlighting its own dual nature.

Worn straight on the head, its bucket shape recalls a pith helmet, with a little nautical nod. So I embraced its military bearing with a buttoned-up look.

Paired with a vintage 1920s dress, the hat feels flapper-ish and adds a little fun (and some much-needed head-shade) to a sunny afternoon in the park.

The crossroads hat definitely captures the dual mindset chemotherapy requires: embracing toxic chemicals and unpleasant side effects now in order to achieve health, long-term. It seems equally apropos of our current election season….

Every day is a kind of crossroads. Every day, finding whatever beauty and joy in the present that is possible is a path we can choose.

Heads Up!

Photographer: Steve Prisley

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