It’s challenging to retain one’s sense of dignity while standing in an exam room naked, wrapped only in a crinkly paper hospital gown that doesn’t quite close in the back. It also feels rather undignified to have an esophageal spasm sneak up on me at the dinner table and erupt with a noise something between a belch and a heave. Illness has a way of exposing us–sometimes literally–in profoundly humbling ways.
But what does it mean to possess dignity, or to be dignified (or, conversely, undignified)? To my ear the noun and the adjective have slightly different connotations. I think of “dignity” as an aspect or feature of a person’s character, a personal attribute or identity trait, whereas “dignified” is descriptive of a particular action or behavior–acting in a way generally deemed appropriate to the context or situation. (Thus a person could be possessed of an essential dignity while occasionally behaving in an undignified manner.)
But both words, I think, call up the image of a kind of stoicism or reserve, someone a little outside of it all, above the fray. Dignity is something we attribute to someone who maintains control, keeps calm in even the most trying or tragic of circumstances– the parent who’s lost a child but is able to deliver an eloquent speech, for example, without dissolving into tears. To be undignified, on the other hand, is to be out of control, to react in an outsized manner–the athlete who throws a racket in a fit of pique, the drunk partygoer who turns loud and rude.
But what’s the cost of associating dignity and dignified behavior with a stiff upper lip, repressed emotion, an invulnerable facade? Especially for someone who is robbed of control–perhaps even autonomy–by illness or other circumstances derived not from their own choices? Why should it be undignified to cry if it hurts, to curse at the bloody unfairness of it all? We shouldn’t have to suppress essential elements of what makes us human to feel our own sense of, or be seen as having, dignity.
When I asked hubby Steve how he would define dignity, he answered “recognition of value.” His definition echoes the word’s etymology, which indicates it descends from concepts connected to “worth.”
I will never be comfortable making impolite noises in the company of others. But I know that my inability to control them is not a measure of my worth. And if I cry sometimes, I hope that I am all the more human and none the less dignified for my honesty. Let’s normalize a sense of dignity that embraces the full human, rather than valorizing our ability to partition off our emotions. There is value–and dignity–in all that makes us who we are.
This coming Friday, I will celebrate my fifty-first birthday. And make no mistake, though it will just be Steve and me at home with the cats, there will be a full-on party taking place in my heart.
One year ago yesterday, a Saturday, I was at The Stone House owned by Black Dog Salvage, preparing for my “Fifty and Fabulous” birthday party. We’d been planning the party for a while, and I was excited and looking forward to the evening’s festivities. But my joy was tempered by news I’d received two days earlier. On that Thursday I’d been taking part in an annual holiday craft fair sponsored by the women’s organization at Roanoke College. I had arranged my table of wares for sale: origami tea-light lanterns, notecards that featured prints of my watercolors, and a few original watercolor cards. I’d just gotten things set up to my satisfaction when I saw I’d missed a phone call from my breast surgeon’s office. I knew it was likely to be about the results of a recent punch biopsy from a red patch that had developed just above my left armpit. I slipped into an empty classroom, sat down in a desk, and returned the call with shaking hands and clumsy fingers. I wanted to know, but I didn’t want to know. I was worried.
When the nurse practitioner came on the line, she asked me if I was sitting down. I pretty much had my answer in that moment. Then came the gut punch.
“I’m afraid I have some really bad news,” she said.
Wait, what? Even in my state of heightened anxiety, I felt like something was off in the way she was framing things. But it was all I could do to keep breathing. “Okay.”
“The biopsy does show breast cancer.”
“I’m so sorry. I know you were hoping for a different result. We all were.”
Breathe, Sandee, Breathe. I asked her something about next steps, what tests I’d need. She told me they’d refer me to my medical oncologist, and I’d need scans, then likely chemo and/or radiation.
Then she said, “Unfortunately, most of the time when we see it in the skin, it means it’s already everywhere.”
Every cell in my body clanged like a fire engine heading to a five-alarm fire. No. No, no, no, no, no. We ended the call, and I walked, stunned, back to my exhibit table. I’d brought some paints and blank cards with me, and the only thing that saved me running screaming from the room was making art. I put my head down and started drawing, one tiny line after another tiny line, until they formed a flower. Then another. This. I can still do this.
I kept it mostly together until I delivered a pack of notecards to a colleague I knew, though not well, on my way back to my office. She asked how I was doing, and the dam broke. She sat with me in a back room until I calmed down, then I headed to my office and on to a scheduled hair appointment. I cried to my hairdresser, who is a wizard with both hair and human. How on earth was I going to get through my party? I didn’t want it to become all maudlin and weepy. I wanted it to be a celebration. In many ways, perhaps, I needed to celebrate more than ever.
Steve was traveling on business and driving back from Tennessee that day, and I didn’t want to upset him and then have him be on the road, so I held off calling him. My parents were scheduled to arrive late that afternoon. I expected to burst into tears the moment one of them put their arms around me to hug hello, but it didn’t happen. And then something shifted in me, and I didn’t want to be the daughter with cancer. I just wanted a nice, normal afternoon, pleasant conversation, party talk. At some point I decided I would hold the news unless or until one of them asked me directly about the biopsy. That didn’t happen until after dinner, shortly after Steve came in, when we were all sitting in the living room together. My mother asked if I’d ever heard back about my test. I whispered–all I could manage, suddenly–“Yes. Yes, I did.”
I’m still angry about the editorializing that framed the report–you don’t tell a patient “I have really bad news,” which essentially tells them “be scared” and adds to their trauma. Using I-language, something like “I’m sorry to have to tell you that…” helps the patient understand it’s not good news, but doesn’t impose emotions on them. And it was way out of line that I was told skin metastasis is often a sign of widespread disease. It was pure speculation, terrifying, and utterly unhelpful, as neither I nor my doctors could confirm or deny where the cancer was or wasn’t until I had more tests. Because of that statement, I had to do the extra labor of carrying that possible story around while I waited to know. One of the most important aspects of self-care you can exercise as a cancer patient is to distinguish what you know from the stories you might tell yourself about what you know, and all we knew was that I had a small patch of cancer in the skin above my left arm. That news was hard enough to hear without the commentary. We would later find out that it wasn’t everywhere, only in the skin and a few nearby lymph nodes.
But I was talking about celebrations, and I promised you a happy story. As my parents, Steve, and I sat in the living room that Thursday night, processing, after I’d answered my mother’s question and we’d all shed a few tears, Steve asked, “So, is the party still on?”
My answer: “Hell, yes, the party’s still on!”
And it was. We didn’t share the news outside of family ahead of time so we could focus on fun. And it was fun, and fabulous, full of friends and laughter and family and cupcakes and music and dancing. There were a couple of toasts, and as Steve spoke his, I looked around the room at all the people who’d filled my life and heart with so much beauty and joy. And in that moment, I knew something important.
I knew that I had loved, and I had been loved. And I would keep loving and being loved. And whatever else I would or wouldn’t do in my days on this earth, that was the deepest, truest, most wonderful gift. That was my story. That alone makes mine a life well-lived.
Then we all raised our glasses, turned up the music, and danced.
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.
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.
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:
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!
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.
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 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.
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.
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.
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.
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.
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.
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.
And happy birthday, Dad! Thank you for the loan of your wonderful hat.
∼ 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. ∼
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.
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.
The 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.
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.
I’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.
I’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.
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:
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!
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!
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.
I 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).
I’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.
We 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.