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.

 

 

Heads Up! #8: Dad’s Gray Stetson

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Dad in his Stetson

My father taught for well over forty years in the public school system; he started with a few years of high school in Texas, and then, for the bulk of his career, taught chemistry at a community college in Georgia. He’s retired now, and tomorrow is his birthday. In honor of the contributions he and all other smart, dedicated, and hard-working teachers have made to the education and growth of our young people, I’m featuring his vintage gray Stetson in today’s Heads Up! post.

The hat itself testifies to the kind of opportunity and success access to public education offers. My dad, Garry, grew up on a farm in rural Texas, and he was the first in his family to go to college. When he graduated in 1964 from what was then East Texas State University, his parents gifted him the Stetson as a graduation gift.

It fits!
It fits!

According to the receipt, still tucked in the box, the hat cost $12, the equivalent of around $94 today. After graduating, he put his degree right back to work in the service of educating others.

I remember him wearing the Stetson on occasion during my childhood. When I was in middle school, we discovered that it fit me, too. Both my father and I have (at least judging by the general inventory of the hat industry) unusually small heads. So it was a kick to discover that I could sport his Stetson.

Having grown up in the Southeast, I never had my parents’ bent for Western style (though I am partial to boots of all kinds). To give the Stetson a little feminine flair I added a (removable) floral band and paired it with a cozy blue wrap over a mixed calico-print dress and jeans.

According to the official Stetson website, the company was founded in 1865 by John Batterson Stetson, who, after traveling out west as a young man, returned east to open a hat-making shop in Philadelphia. His father had also been in the trade, and passed his skills on to his son. With an initial investment of somewhere between $60 and $100 (accounts vary), Stetson finally struck a chord with his “Boss of the Plains” design in 1869 and in 1870 purchased property for his own factory. After his death in 1901 and well into the 1950s, the company designed and manufactured a wide variety of styles, including hats for the military during the war.

When hats began to drift out of daily fashion in the 1960s, it was President Lyndon B. Johnson’s influence that encouraged the company’s turn toward Western styles. That proved a long-term lucrative market. Manufacturing moved to Missouri, and movies like Raiders of the Lost Ark helped keep the hats popular. The current Stetson factory is in Garland, Texas.

Changing up the band of my Dad’s hat to a narrow one in black, rust, and gold makes the Stetson the perfect accessory for a black poncho, jeans, and equestrian-style boots.

So here’s a hats off to all our educators, especially those like my Dad who’ve dedicated their entire careers to public education. Thank you for your service. We are indebted to you and will continue to need your wisdom, guidance, and strength.StestonBridge1

And happy birthday, Dad! Thank you for the loan of your wonderful hat.

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Heads up!

∼ Beautiful, quirky hats make me happy. The “Heads Up!” series is a reminder to keep my (still bald-ish) 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. ∼

Photos by Steve Prisley

Past Perfect: The Grammar of Healing

My husband is the math mind in the family; I’m the English nerd. But lately I’ve found myself thinking less about settings and symbolism, and more about symmetry and statistics.

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Mirror, Mirror…

Many years ago, I did an experiment where I held a small mirror up to the center of my face while looking in a second larger mirror, so I could see how I’d appear if my face were perfectly symmetrical. All of us are at least a little asymmetrical, so the trick quickly reveals the differences, large or small, in the two sides of one’s face: the right eye has a little more tilt than the left, maybe, or one cheek is a bit fuller than its counterpart. The altered reflection, for me, almost felt like looking at different person, perhaps a sibling of myself.

notetnc2The process of bilateral breast reconstruction has a tendency to highlight other asymmetries. The first thing my reconstructive surgeon said to me when he looked at my pre-surgery chest was that my left rib cage sat a little more forward, was a tiny bit more prominent, than my right. I’d never noticed this particular (minor) anomaly, but it’s apparently just as common for there to be asymmetry in the rib cage as in the face. The difference in my bone structure became most noticeable immediately after surgery and during my early tissue expander fills; for a while the right expander lagged behind the left, making me look lopsided. I also discovered I have a pocket of fat on my right upper back, unmatched on the left, which appeared only when I didn’t have breasts to pull the skin forward and keep it flattened out.

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Even Olympic athletes’ bodies vary dramatically. (Photo by Schatz and Ornstein)

Studies indicate we equate higher levels of symmetry with perception of beauty, so it’s only too easy to worry over our various anatomical irregularities. But there’s so much about our bodies that’s out of our control: the set of our features; our bone structure; height; the size and shape of breasts, booty, genitals, hands and feet. We can exercise and lift weights to affect our body composition—but the ability to bulk up muscle mass, and the places our fat cells are predisposed to distribute themselves? That’s pre-determined. Significant elements of our health are hardwired too: some suffer multiple allergies from birth, for example, while others are born with immune systems seemingly hewn from impenetrable stone.

Bodies are glitchy and unpredictable in surprising ways, for better and for worse. The fact my body grew a malignant mass is somewhat mysterious: I am, as best we can tell, the first person in my blood family on either side to develop cancer of any kind. My body’s responsiveness to treatment is, to my mind, equally mysterious, and awe-inspiring: I learned this week that only 20 to 30 percent of triple negative breast cancer patients have, as I did, a “complete pathologic response” to chemotherapy. I was thrilled when we got the pathology report stating they’d found no evidence of remaining cancer during surgery, but the news felt weirdly abstracted. Learning the actual statistical probability of achieving that response was sobering. It made me realize just how incredibly fortunate I am. Having a complete response lessens the chance of recurrence dramatically, dropping it from 35+ percent down to 5 percent. As my oncologist said, it’s cancer, so there are no guarantees. But short of never having developed it in the first place, the odds for long-term survival are the best they can be.

davinciI’ve often felt lucky to be in the body I am. Aside from some cranky tonsils, a couple bouts of pneumonia, and one broken bone, I’ve been hale and hearty most of my forty-seven years, and I’ve managed to stay active and maintain a healthy, if not altogether svelte, weight into my middle age without Herculean effort. Excepting the sixth grade, when my legs had a sudden growth spurt separate from the rest of my body that briefly turned me into a sort of hybrid stork-human, my parts are mostly proportional, and my face, while perhaps not symmetrical enough for Hollywood’s standards, is reasonably attractive.

I did nothing (unless you count that bane of puberty, wearing braces) to “earn” any of these features of anatomy. They just are, like my cancer, like my cancer’s responsiveness to treatment. Why did my body grow malignant cells in the first place? I don’t know. Why were those cells especially sensitive to death-by-chemotherapy? I don’t know the answer to that either. I do know I’m extremely lucky and profoundly grateful to be in the relatively small percentage of survivors who have that experience.

survivorship4I’m just vain enough to feel relieved that the obvious asymmetries that appeared in my chest and back are slowly evening out as reconstruction progresses. But I’m far more reassured by a different realization. As I walked into the dining room Tuesday night, preparing to sit down to dinner with my hubby, it suddenly occurred to me: I no longer have cancer. Granted, my treatment isn’t quite done–follow-up radiation is the standard-of-care for triple negative diagnoses, even with a complete response to chemo, and reconstruction will take a while longer. But the chemotherapy worked; the surgery confirmed it. No more need I say, I have cancer.  Now I can say, I had cancer.

My inner English nerd reappeared, rejoicing: the simple past tense has never sounded so beautiful.

As Good As It Gets!

The good news: when I went in for my second “fill” today, I was able to have one of my JP drains removed. Here I am, happily saying goodbye to it:

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The length of tubing stretching from the open end in my left hand to the fingers of my right was what was inside my body–yikes. Makes we wonder where, exactly, it all wound around.

So that’s the good news. But the BEST news is this: my pathology reports from surgery came back, and I am officially cancer-free! They found NO cancer cells in either breast or in lymph nodes. None. Nada. Zilch. Hooray!

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Receiving the report makes for a great start to the new year. This is me enjoying a celebratory Starbucks. Cheers!

I will still undergo radiation treatments, as one final precautionary push-back against the possibility of local recurrence in the skin or area lymph nodes. Radiation will start in another three weeks or so. In the meantime, drain #2 will likely come out within the week (which may, on its own, be enough to warrant a second celebratory latte!).

There are no guarantees; there never are in life. But in this context, on this journey, today’s news is genuinely as good as it gets. I am humbled and deeply grateful.

Please celebrate with me by hugging someone you love, and telling them how much they mean to you. Happy, happy new year, all!


Coming soon: more thoughts on hair, an homage to husbands, and some new ideas for doing good to feel good in 2017. Thanks as always for reading!

Simple Gifts

The Twelve Days of Christmas traditionally start on Christmas Day, December 25th, and continue through January 6th. The “twelves” that are on my mind these days are a bit different: having had surgery on December 12th means that today, Christmas Eve, marks my 12th day of recovery. Everyone has told me that the first two weeks are the hardest (and I hope they’re right), so I am glad to have reached this milestone, and look forward to continued healing over the next days and weeks.

img_0591I am more aware than ever of the many gifts in my life. Plentiful food; a warm, safe, spacious home. The love and care of so many people: devoted family who share their time and energy generously, decorating the tree, making meals, running errands, offering a voice of experience. Beloved friends who text encouraging messages, share their skills and favorite books, send beautiful holiday cards and bouquets that brighten up the darker days. And an incredible husband who stands by my side, makes me laugh, and doesn’t blink at changing bandages or fetching yet another Coca-Cola Icee (or even question my weird craving for them).

img_0593I’m also aware of gifts I’ve received for so many years without any comprehension they were gifts: the mobility to towel myself dry after a shower, mindlessly, unaware of the many twists and turns my body had to make to accomplish this simple task; the steadiness to reach the sugar where it lives on the highest kitchen shelf without having to ask for help; the stamina to sit at my computer and write for hours at a stretch. The gift of the absence of pain or discomfort. The gift of good health. Gifts I hope to receive again, and fully appreciate hereafter.

img_0634We won’t receive the full pathology report from the surgery until early January: we are hoping, based on the post-chemo scans, for good news.  Until then, we will continue to celebrate the gift–a precious one– of another Christmas together. And I’ll keep you posted as often as I’m able about my ongoing Adventures in Cancerland.

Happy holidays, everyone!

Heads Up! #6: Vintage Sparkle

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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.sandee-55

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. ∼