compassion – Still Life, Beyond Cancer

Here’s to the Husbands and Partners

January 27, 2017Sandee McGlaun

On October 31st, 2016, then-President Barack Obama made a Presidential Proclamation declaring November “National Family Caregivers Month,” honoring “those who give of themselves to be there for their family, friends, and neighbors in challenging times.” At the time, I missed the announcement, still in a pretty pronounced post-chemo fog of pain and fatigue. And I was especially distracted that week: on November 1st, I was scheduled for a post-chemo mammogram and ultrasound, followed by an appointment with my oncologic surgeon to review the results of the scans, which would tell us whether or not chemo had been effective. November 1^st was also hubby Steve’s birthday. When we’d met with the oncologic surgeon pre-chemo to talk scans, the news had been tough, so we’d held off scheduling any birthday festivities for the evening, just in case.

Though anxious, we were hopeful, and thankfully, the news was good. Still, I felt guilty, filling Steve’s birthday with yet another set of medical appointments. He’d been right by my side for most every single doctor’s visit or test since June, whether surgical consultation or CT scan or hours-long chemotherapy treatment. Going to the doctor isn’t much fun even when it’s your own body you’re trying to heal, and a sterile medical office with outdated magazines definitely does not scream “birthday party.”

In his proclamation, the former President lauded the “incredible generosity” of family caregivers, a description that itself seems almost not generous enough for the reality of spouses and partners of women with breast cancer. Along with accompanying me to appointments, Steve has driven me to offices and errands near and far, waited patiently, lent a second ear, helped me manage the information overload. He’s taken on the bulk of the household chores. He’s held me when I needed to cry; he makes jokes so I don’t forget to laugh. He’s encouraged me to take naps and go on walks, and he’s fetched my prescriptions and the occasional Coca-Cola Icee whenever I craved one. After surgery, when I was especially unsteady, I took over his bathroom because the shower there was easier to get in and out of. Meanwhile, he slept on a mattress on the bedroom floor for a month because I needed to keep the head of the bed elevated to prevent tangling my drains.

And speaking of drains, he gently, and diligently, stripped my JP drain tubes each morning and evening, without batting an eye, kneeling by the bedside, eye level with my bruised, scarred, and misshapen chest. Seeing my altered landscape must have been weird for him; I mean, it was, and is, weird for me. Yet Steve has never let on that he’s bothered by the changes in my body. (Okay, he admitted he was a little grossed out by the stringy chicken-fat-like gunk that occasionally showed up in my drains, but—so was I. Major yuck.)

I think it’s safe to say Steve has gone above and beyond. Seriously: this is a man who let me demonstrate the discomfort of my tissue expanders by allowing me to reach around his chest from behind, grab his pecs, and squeeze as hard as I could.

Maybe once you’ve made your vows and declared “for better or worse, in sickness and in health,” it’s just expected that you’ll be fully present for your partner in a medical crisis. But I don’t think a spouse’s ability to be a good caregiver is a given, and I don’t take my husband’s compassion or support for granted.

Obama opened his proclamation honoring family caregivers with the observation that “[o]ur nation was founded on the fundamental idea that we all do better when we look out for one another.” And so we do. So here’s to all the husbands and partners, who drive us to appointments and do all the dishes; who listen and lift up; who help us grow comfortable—physically and emotionally—with our changing bodies; who stand beside us through the tough times.

Steve recently marched by my side in our local Women’s March. He identifies as a socially liberal, fiscal conservative, while I am (I took a test) left of the Dalai Lama. He does support a majority of the March’s official platform, but we hold different enough views that when we discuss politics, we often find ourselves baffled and frustrated by the other’s perspective. Still, we listen, and we learn. We don’t expect we’ll come to consensus about every issue, and we don’t make consensus a precondition for civility or respect, and certainly not love. I knew, when we found each other, that what we’d found was rare. After traveling through cancerland together, I understand that truth even more deeply. And after watching the world in the past week, I understand, and value it, more deeply still.

Radiation begins on Monday. Steve still helps me into my coat every day. And until my range of motion improves enough for me to put it on by myself, I know he’ll be there, holding it open and sliding it over my shoulders, ensuring I stay warm and protected through the long winter’s chill.

They’re Not “Just Boobs” to Me

December 9, 2016December 10, 2016Sandee McGlaun

“They’re just boobs.”

More than one well-meaning friend or acquaintance has uttered that or a similar statement in an attempt to comfort me, minimize the anxiety I feel as I face a bilateral mastectomy. I will willingly say good-bye to my natural breasts in the interest of prolonging my life; it’s the wise choice. But there’s no “just” about it.

They aren’t “just” boobs. They’re my boobs. My breasts are part of me. I have not, and will not, “use” them, it is true, for their evolutionary purpose, to feed a child or children. As such, some might say they are extraneous.

But they’re mine. And I like them.

And I grieve their loss.

~~~

I didn’t always like my breasts. They debuted, when I was a young teen, as small knots on my chest, literally: hard bumps arose underneath each of my nipples. I was embarrassed to ask my pediatrician to examine these buds, but he reassured me (and my mother) everything was fine. For years I worried I was “too small,” even after I turned seventeen and suddenly gained a cup size, perhaps a result of the hearty German fare I ate while an exchange student that year. I still felt my minimal cleavage didn’t quite balance out my womanly hips, that my nipples were too prominent.

And they were troublemakers, these breasts of mine. When I was in my late twenties, I found a lump. It turned out to be nothing but a benign, fluid-filled cyst, and some doctors in the medical center at Ohio State, where I was in grad school, drained it. That was the first of many more benign cysts, too many to count.

It was also the start of many years of creative commentary by various medical professionals. I’m a “cyst-maker”; I have “busy breasts.” Enough nurses and doctors expressed surprise at the number and volume of my cysts that I felt like a curiosity. One surgeon in Georgia, who I’d been referred to for draining yet another set of what one nurse called my “natural implants,” greeted me by exclaiming, “Why, you’re just a little bitty thing!” He waved a copy of my scans through the air. ”After seeing the size of your cysts, I thought you’d have great big ba-zooms!”

I didn’t, though I was slowly learning to appreciate them just as they were. Practically speaking, smaller breasts offered maximum wardrobe flexibility: I could wear low-cut or clingy tops without attracting unwanted attention, and button-downs never gaped. But I also finally realized they were, actually, pretty nice breasts. Kind of perky, actually. By the time I reached my early thirties, I’d have said they were my favorite part of my body.

Like many women, I’ve often struggled with body image and self-doubt. It took me more than half my life to love my breasts. Now I must let them go, and re-learn to embrace my body, post-surgery, all over again.

~~~

I know I am no more or less a woman with or without my breasts. My identity as a woman, my worth as a human, is not defined by the shape or size of my chest. Nor do I assume that breasts are universal signifiers for femininity, womanhood, or desirability. In fact, the way breasts are weirdly glorified and overly sexualized, especially in American culture, has often puzzled and annoyed me. I once argued with a man who insisted that breasts were always sexual. No, I replied. If I choose to walk out my front door with my breasts exposed, or with no clothes on at all, that does not necessarily constitute a sexual act; minus a display of express and clear intent, it’s definitely not a sexual invitation. I’m just naked, and we’re all, as the saying goes, naked under our clothes.

Something else I know: attachment is the root of all suffering. Yet I find it difficult not to be attached to something that is, well, attached to me. Front and center.

My breasts have been my conscious companions at the beach, suited up and sun-screened in a cleavage-baring bikini; on the figure-modeling dais, revealed in the service of a painter’s line, curve, and shadow; on the running trail, compressed and protected in a jazzy neon sports bra.

My breasts have brought me pleasure in private moments, sensual pleasure wrapped up in sensitive nerve endings and a lover’s tender touch, his open admiration. My breasts have brought me aesthetic pleasure, when I slip into a pretty dress that fits just so, hugs the curves of my hips and breasts in a way that makes me feel sexy and beautiful.

My breasts are not some idle, remote organ like an appendix, whose absence I’d scarcely notice. They are a daily presence and a source of pleasure, and I will miss them.

~~~

I will have reconstruction, and I’m grateful for that. I’ve talked to enough survivors, however, to understand the process is no picnic. And my bionic boobs, as I’ve come to call them, will look and feel quite different from my natural breasts.

I’ve been trying to find ways to reconcile myself to the coming changes. I’ve begun to try to re-frame the mastectomy in my mind: instead of thinking about losing my breasts, I focus on regaining my health. I’m saying goodbye to a cherished part of my body, but I am also saying goodbye to the cancer.

I’ve tried to imagine my breasts as being like an old friend, one whose friendship has become toxic. She was a perfect match in my younger years: we liked the same music, went to the same parties, celebrated good days and commiserated over bad ones. Then, she began to lash out, to drink too much; when I was around her, so did I. We had a great run, my old friend and I, but now—well, she’s not healthy for me anymore. I appreciate the good times we shared; I’m grateful and glad for her having been in my life. Even though it hurts, I know I have to say goodbye.

Still, my body isn’t a metaphor. Metaphors don’t go numb or swell with lymphedema. They don’t scar or press your chest with pain. They don’t change what you wake up to every morning, what you see in the mirror, for the remainder of your days.

I’m working on cultivating greater self-compassion and acceptance. I recently hired a photographer to document and celebrate my pre-surgery body, highlighting my bald head with a beautiful custom headpiece. And this time, after surgery, I don’t want to wait thirty years to decide to like my body, my (new) breasts. It won’t always be easy, but loving myself as I am is a choice I will endeavor to make every day.

The photos included here are a preview selection from the shoot described in the post: photos by Michael Wilson, Bohemian Robot Photography; make-up by Jolina Goad, Jolina does Make-up; bespoke headpiece by Sandra Eileen, Every Girl a Goddess Couture Headpieces.

Be Kind. Always.

October 7, 2016October 7, 2016Sandee McGlaun

Not too long after I was diagnosed with breast cancer, a meme appeared in my Facebook feed: “Everyone you meet is fighting a battle you know nothing about. Be Kind. Always.”

I had seen this piece of wisdom before, but prior to my current struggle, it was essentially an abstraction. I’ve quickly come to understand it at a much more visceral level. You never really know what’s going on inside another person. So be kind, be compassionate.

Because you never really know.

A parable of sorts.

In between the date of receiving my cancer diagnosis and going broadly public with it, I shared a post on my Facebook page that listed which members of congress had voted to allow those on the Terrorist Watch List to buy assault rifles. Though headlined with the clear stance “Vote the nay-voters out,” the list itself was pure information: who voted for what. Immediately a Facebook “friend”—John, someone I barely remember from high school—responded with disagreement, and a lively thread largely populated by three additional friends who supported the initial stance ensued.

I’d shared the post the same morning I had my first appointment with the breast surgeon. There I learned that my cancer was Stage 3 with lymph node involvement, that I would need chemotherapy before surgery, that further tests were required to verify there was no metastasis. It was heavy news, not what we’d hoped for, and in that moment the second amendment quickly shifted pretty far down my list of concerns.

In the thread, John had moved fast to dismissive comments peppered with things like “STFU,” “you don’t have a clue,” and broad insults to all liberals. I have no patience for incivility of that sort on a good day, and the rapidly rising snark factor upset me. After a few more snipes and insults, I wrote the following on the thread:

“John, enough. I am not having the best day ever and this stuff is not helping. Thanks all.

And just a note for the future. I don’t post things on my page as an invitation for other people to shoot them down and argue with me. I post them because I believe in them. You don’t have to agree, but neither do you have to try to start an argument. My mind is unlikely to be changed, and I don’t need that kind of negativity in my life.”

I pointed out I’d never once picked an argument deliberately on his page, although he frequently leapt at the chance to tell me how wrong I was in my posts. I asked him to stop, to show some restraint, as nicely as I could.

His response: “Spoken like a true liberal. Only post if you agree. No opposing arguments. Got it.”

And then he posted this (completely unsourced, terrible visual-quality) graphic, on causes of death in the USA:

The number three cause of death listed: cancer.

Everyone you meet is fighting a battle you know nothing about. Be kind. Always.

Since my own diagnosis, I’ve had a friend suffer from a serious spider bite. Another saw his sister diagnosed with cancer. Two friends have seen their beloved dogs through serious surgeries and biopsies. Another, an avid runner, is laid up for a few months after surgery to repair ruptured tendons and ligaments. Still another tragically lost her son to suicide. A former student faces abdominal surgery for ongoing health issues, a dear friend has heart surgery coming up soon. The aging parents of several friends have been in and out of the hospital multiple times, and one young woman lost her mother. Another girlfriend has feared loss of a job. A twenty-two-year-old model I’ve worked with continues his battle against leukemia. Two friends have disclosed serious depression. And countless people now face recovering from the damages of Hurricane Matthew.

And these are just some of the battles I do know about.

What of all the others? The man in front of me in line at the grocery store? The student sitting quietly in the back of the coffee shop? The neighbor loading a box into her car? The commenter on the online thread?

Since my own diagnosis, I have been the recipient of depths and breadths of kindness that I do not know how I will ever repay. Notes, cards, music, books, food, flowers, yoga, housecleaning, hugs, prayers, gatherings of support, so so many words of encouragement. I have been moved to tears by the incredible love and generosity of the people in this world.

That is the world I want to live in, to help create.

Everyone you meet is fighting a battle you know nothing about.

Be kind.

Always.

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