Get over it or get past it (or both)?

No! I didn’t get over it already. What’s more realistic is I’ve gotten past it. Trauma is like flowers that bloom, go dormant, and bloom again. Get over it implies the impact ended. Get past it implies overcoming the impact. Overcome and end have different finish lines. I’ll get over the cancer experience once there’s a cure.

Here’s evidence I’m past it:

  • Less intense panic attacks
  • Fewer decisions I’m too paralyzed to make
  • No need to explain that quadruple mastectomies dictate my wardrobe choices.
  • Haircuts are haircuts, not flashbacks about being bald.

What’s the ‘it’ I’m past?

The radiologist, who I’d never met, entered the room, stared at the screen, and declared with certainty the abnormalities on my breast ultrasound were benign. The ultrasound technician looked shocked but didn’t contradict him. The radiologist missed the cancer. When my doctor did follow up, one year late, I was four months from dead of advanced breast cancer. Treatment left me exhausted, underweight, brain-fried, and angry the cancer wasn’t diagnosed before it required heavy artillery.

They made mistakes where they’re supposed to be experts. But, most decisions rely on imperfect information; even experts can’t know every variable. My diagnosis was in time, if not timely.

I’m grateful. I’m past it.

Changing piece of mind to peace of mind

Oh, I was naive to believe my life’s path led straight to graduation and some career. In a blind turn I should’ve but didn’t see coming, the path suddenly dropped off a cliff. Desperate, I clung to roots and branches, terrified of bashing my brains out. I crash-landed, survived, yet couldn’t imagine salvaging a meaningful future. 25-years later that particular cliffhanger had an unexpected happending.

Change seems to breed retrospection and paradox. My past is as big a surprise as any future. I’m in wonderment that I got from then to now. I’ve craved and feared change. Sometimes what I craved transformed into what I feared or what I feared became what I craved. Some big changes left small impacts; some small changes left huge impacts.

I’ve never yelled: “Bring more change. It’s so restful here in the rubble of what used to be.” Change steamrolled ahead anyway. I hung on tight, trying to anticipate impacts, manage risks, adapt as needed, pray it ends well. After profound change came the fun of post change syndrome (PCS), getting used to whatever’s new. I credit four qualities with surviving life’s cliffs I’ve tumbled down – Resilience, Mindset, Optimism and Discipline. I posted about Resilience. It’s Mindset’s turn.

Most of my life I craved courage to write. Writing is hard. I could fail, face rejection and ridicule. My school’s vice-principal selected me to enter a writing contest (“you’re good enough”, he’d said). I never completed the entry form; afraid I’d disappoint him and he’d judge me

Mindset book cover

Now I take the risk of writing online about – of all things – breastlessness. Writing’s still hard. I fail, face rejection and ridicule. Somewhere craving overcame fear and writing happened. Carol Dweck’s research on Mindset [i] didn’t change my life. It did pinpoint what in my life changed. My fixed mindset morphed into an open mindset. Sure, I want to write better. When I fail I learn what I have to do next time.

Dr. Dweck explains that small change can change minds: “mindsets are fostered by a focus on theperson (e.g.,talent or ability) as opposed to a focus on the process (e.g., effort, learning)”.

“Wow, that’s a really good score. You must be smart at this.”
“Wow, that’s a really good score. You must have worked really hard.”
That’s all we did, but the results were dramatic… Intelligence praise, compared to effort (or “process”) praise, put children into a fixed mindset. Instead of giving them confidence, it made them fragile…[ii]
 

In my conflict management practice I draw attention to growth mindsets, assuming even exchanging vowels from piece to peace can foster change.

… the brain was a dynamic, malleable organ and that every time they learned something new their brain formed new connections. … These interventions were relatively modest, but had rather immediate and striking effects.[iii].

Having my breasts amputated (twice) wasn’t entertaining. Was cancer a huge or small change with small or huge impacts, or maybe huge change with huge impacts? I’ll be optimistic and suggest small change with small impacts. Even small change matters but impacts vary with mindsets.

Since August, it feels like I dropped off the path into The Matrix, a simulated reality where my next crisis emerges from my last post.

Chronology of coincidences: 

  • August 22, 2013, I blogged resilience, mindset, optimism and discipline got me through cancer and chemo.
  • September 18, the double mastectomy needed a do-over.
  • September 30, the post about resilience ended: “Now, I’m thinking about Mindset. I’m hoping for no adverse opportunities to put it into practice between this post and the next.”
  • October 13, brain MRI showed an unidentifiable spot. I named it Macbeth[iv]. The neurologist has decreed it benign. Whew.

Yikes, maybe I shouldn’t have said anything about optimism, my next topic.

Resilience helps after a quadruple mastectomy (yup – 4 of ’em)

Oops, I did it again. As in two original breasts, four total mastectomies. Think of that when ordering a double double coffee at Tim’s. After the shock of the first two mastectomies, undergoing another two was – well – a shock. I mean, who has four mastectomies?

Paul comic

“Decker,” I negotiated with my partner, “since you have two nipples to my none, how about a nipple donation? Then you’ll have either a left or right, your choice, and I can have one transplanted to the middle.” He declined.

At least this double mastectomy, on 18 September, was preventative, not because cancer returned. Whew.

remaining breast tissue crop

The July chest ultrasound revealed the bulges were remaining breast tissue and not pooled lymph fluid as we’d believed. Quick consensus followed. Yes, mastectomies may not improve survival. Still, it seemed unwise to leave a potential home for an aggressive cancer while my risk of recurrence is so high. I figured the worst that could happen if I repeated the double mastectomy was that my wardrobe would need adjusting. The worst that could happen if I didn’t have it repeated was too awful to accept as reasonable risk.

Dr. Kanashiro masterfully retraced the incisions she’d made the first time, flattening me further. ‘No’ is still my final answer to reconstruction.

The third and fourth mastectomies were just as miserable an experience as the first and second. Compared to the chemo blowing out my brain, when I fell deep into a non-functional state of profound sadness, repeat mastectomies were only inconvenient. 

Seriously? Have body parts amputated sequentially, endure life alterations in what I’ve dubbed Post Change Syndrome (PCS), and just bounce back? Well, yes. Although ‘bounce’ might be defined as dragging myself up a ragged mountain wall, but that’s where resilience comes in.

In 21 August’s post, I mused about the four qualities that supported my recovery after chemo beat me up:

Resilience, Mindset, Optimism and Discipline.

Once again I relied on these four qualities to recover from drastic change.

The Resilience Project defines resilience well: “In the context of exposure to significant adversity, resilience is both the capacity of individuals to navigate their way to the psychological, social, cultural, and physical resources that sustain their well-being, and their capacity individually and collectively to negotiate for these resources to be provided in culturally meaningful ways.”

I use conflict competence skills to navigate through adversity and negotiate for resources to make my body inhospitable to cancer. But which came first in my case – resilience or conflict competence? I had to trawl my memory for this because, as a professor once said: “scratch a theory, you’ll find a biography.”

Scratch my theory that conflict management is a great skill and you’ll find my biography included battling parents, a home with hostility expressed in screaming insults, leaving me insecure and prone to outbursts. I sought conflict management training to deal with my biography and wound up with a rewarding career and the skills to get through PCS. In my storyline, through negotiation training I gained conflict competence and became resilient.

Grandparents Etta and Meyer Switzer

Grandparents Etta and Meyer Switzer

But I my path to resilience was easier because of one stable person in my childhood – my grandfather.

My new theory: the influence of one stable person plus conflict competence help in adversity. I’m grateful for so many things, including my family and Resilience.

 

The Secret for Recovery from Post Change Syndrome

sadWhether change is from a death, disease, divorce, depression, disappointment, or other disaster, hey, the trauma ended, move on; get over it. Were it so simple. So, I’ll share a secret here first. I’ve figured out what ‘cured’ my PCS (Post Change Syndrome).

Two years ago, Dr. Simpson, exasperated, asked what kept me in sadness when the cancer was in remission. Tears were my silent answer. My risk remains high, so imagine my wonderment that (for the most part) I did get over PCS. But someone recently reminded me of my low time in PCS. Now, with my brain finally engaged again, I’m on a quest to belatedly answer Dr. Simpson’s question.

Origin of the Quest

Trail on the trail 8:2013Trail the Westie’s sensitive terrier nose worked the ground zig-zag, seeking the source of some fantastic smell no human nose appreciated. His determined quest was to sniff the butt of the dog ahead. My intent, compatible with his, was to stay close and keep him safe.

2011-08-05 09.05.22We overtook a shy blind dog that dove behind her human’s legs. Larry, the human, and I untangled leashes and exchanged names. While the dogs lapped sun-warmed glacial water, we admired the magnificence. Larry is also an aspiring writer so next we traded domain names. And then Larry’s reaction to my blog on living  breastlessly: ‘wow, you have a great outlook’.

This response still surprises me. During and since diagnosis I met many with outstanding outlooks. I expected my blog on joyful breastlessness would prove mundane. A chance encounter plus a brain freshly freed of chemo fog launched my quest.

The Questions for the Quest

Being passionately curious, I unleashed my inner terrier:

  1. what is a great outlook?
  2. what are the qualities that facilitate a great outlook despite adversity?
  3. are those qualities common? and
  4. can those qualities be taught, learned, or are they innate (you got ‘em or you don’t)?

I asked my research assistant, Dr. Google, for data on great outlook after adversity. Hmm, 31,100,000 choices. Nap time.

 Methodology of the Quest

in perfect repose 8:2013From the hammock under the apple tree I undertook conflict analyses, rigorous research, and thinking about PCS. No apple fell so I studied Trail’s perfect repose for inspiration.

Findings from the Quest

1. what is a great outlook?

A great outlook is whatever gets someone through PCS feeling sane and healthy on the other side. If it isn’t sane and healthy, it likely isn’t a great outlook. The twin tyrannies of positive thinking and good attitude are privileged as the ‘right’ way to weather PCS’s aftermath, but there’s different adaptive capacities. Cancer Curmudgeon, for example, has a feisty attitude that brooks no guff. It works for her and I always read her posts.

 2. what are the qualities that facilitate a great outlook despite adversity?

In my hammock-based analysis, there are four qualities that made it easier to walk through the PCS goop that clung to my shoes. In order that I employed them, they are:

        1. Resilience: treatments for Triple Negative Breast Cancer were horrible and toxic and I felt gratitude.
        2. Mindset: I don’t quit.
        3. Optimism: it will get better.
        4. Discipline: if that’s my goal, whatever it takes, I’ll do.

3. are those qualities common?’

There are loads of blogs about how breast cancer made someone better, wiser, or nearer God or to life’s meaning. But the qualities that enable the process for doing any of those (should you want to) are not commonly joined together in the blogosphere. These qualities haven’t, previous to this, been identified as the cure to the PCS I invented.laugh

4. can those qualities be taught, learned, or are they innate (you got ‘em or you don’t)?

I’m pleased to report the four qualities of a kick-ass great outlook are indeed quantifiable, measurable and attainable. Resilience and Mindset are teachable traits, Optimism is learnable although it’s also associated with genetics, and Discipline is just a bitch that has to be wrestled to the ground like a runaway.

Conclusions from the Quest

We’ve fragile creatures, body and soul; anyone’s a diagnosis away from disaster. A sudden verdict or invitation can spin us like a tilt-a-whirl midway ride. Recovery from dramatic life altering change is a process. If PCS isn’t a real condition, it sure felt like it when I was inside its grip.

Each person’s cause of PCS is path dependent. Mine can be summed up as: “how do I avoid premature death?” My experience was of PCS as a giant mental vacuum. For me, PCS was the suboptimal edge of panic over what foods to eat, how to rest enough, when to exercise, who’d diagnose new symptoms, where to meditate, why no follow up treatment for Triple Negative Breast Cancer.

Dr. Simpson asked a simple question: what was keeping me stuck in PCS? I didn’t know the answer. The answer I now give Dr. Simpson is to a different question: what got me unstuck from PCS?

Resilience     Mindset     Optimism     Discipline

The next four posts will muse about each quality.

Flat is Beautiful

The local newspaper, The Calgary Herald, today printed the last installment of a weeklong feature series on the trouble women have getting reconstructive breast surgery. Wow. Who knew the private matter of a woman who had, lost and now wants breasts again was up for public debate? The journalist’s thesis was ‘having cancer is bad enough, being disfigured is a constant reminder and psychologically painful. Your sense of identity is lost. It’s hard to function or feel normal when you’re self-conscious, demoralized and despairing. Mastectomies are a medical condition deserving of breast reconstruction.’ The journalist referred to it as Battle Scars.

Those interviewed for the counterargument said: ‘reconstruction, like cosmetic surgery and breast augmentation, is elective, costly and low priority. Breast reconstruction should get operating room time after surgical needs for physical trauma and pain. The medical system saved your life from killer breast cancer. Be grateful and be quiet.’ (One husband in the article was quoted calling anyone expressing this sentiment “insensitive” and worth being punched out.)

Is it really a public policy issue how I look or feel after my double mastectomy left me flat chested to the bone with a cover of skin? Cancer can change a person, visibly and invisibly.  People now guess I’m 10 years older than I looked two years ago. My two-and-a-half years older sister Andria was, on more than one occasion mistaken for my mother. My daughter was taken to be older or at least the same age as me before treatment. Not any more.

What’s invisible is the change in my attitude about how I look. I enjoyed my breasts, and my figure got attention. If I’m noticed now, say – in the locker room after a workout when I walk around with a towel at my waist like a man – it’s an opportunity to talk about breast health, the need for a positive lifestyle, and taking care of ourselves. My reality is to defy the beauty industry and what we’re sold as the feminine standard. I have scars from sternum to armpit from mastectomies, not from battles. This is my new shape. I don’t see myself, as one plastic surgeon in the article called women with mastectomies, as a “poor women going through this difficult time” but my heart goes out to the women who relate to that sentiment.

I wonder if our attitudes about our bodies before surgery are a reflection of our attitudes towards them after surgery? If so, then perhaps we should be looking (and this isn’t a stunning new insight) at how to support women gain confidence in their worth no matter what breasts they have or don’t have.  For example, do you remember Twiggy, the first skinny supermodel? She made flat girls trendy. Dressed in mod paisley polyester (aw crap, what was I thinking?) my breast buds and hipless shape were, to my immature brain, so cool that I was hot. Now I know I was delusional, but it was fun at the time. Being breastless now isn’t much different than it was then. Batty odd woman alert – I’m goin’ back to my Twiggy persona. MR900349135

I find the question: ‘How can we support women/people to accept the changes as well as those who grieve and mourn their loss?’ a more relevant and useful and interesting exploration than: ‘Why can’t women have reconstruction whenever they want it.’

Some women aren’t resilient, but research suggests most anyone can be. It’s another lesson from the conflict competence toolkit. Resilience is a teachable learnable skill and it’s never too late to learn it. Besides, resilience looks good on a girl without or with breasts, whether reconstructed or real.