3 questions better than ‘why me’

I get it. Living is deadly. The risks are huge and, in time, death is certain. So, my first question on learning I had advanced, aggressive, rare breast cancer was too obvious: “Am I going to die?”

My partner, Decker, said: “Yes.”

When we were done laughing, my next question was: “Soon?”

He said: “I hope not.”

The last question I asked my wonderful oncologist: “How will I know I’ve survived cancer?”  “When you die of something else,” he said as he cheerfully discharged me from care.

Yippee. I’ve survived cancer if I die in a car accident, have a fatal heart attack, or win the Darwin Award.

If I want different answers, I have to ask different questions. Here are my replacement questions:

1. What do I fear? I survive ’til I die and not longer. All the expensive powders, pills and lifestyle secrets won’t deliver immortality. Survival is day-by-day, much like life is. Once I accept this, I can, at the same time, want to avoid and yet not fear dying.

2. Why do I want to know? It’s tempting to ask “why me” but that isn’t the right question for at least four reasons. First, there often isn’t an answer. Second, knowing “the” reason buys into blame as if I should regret my past that ’caused’ the cancer. Third, ‘why me’ makes me anxious about my actions now, when really, I’m doing the best I can. Fourth, ‘why me’ is a despairing cry for my future, as if I have no reason for optimism.

3. How can I express my authentic feelings even if they aren’t happy? Yes, cancer patients do better with positive thinking and good attitude. ‘Positive’ and ‘good’ are twin tyrannies, judging when I think negative with a bad attitude. I  could suppress my authentic feelings or just accept that’s how I feel right now and it’ll change. Conflict teaches that feelings, like relationships, can change, be enriched, repair, heal.

Cancer reduced my ‘bucket’ list to three entries: do volunteer work, write publishable novel(s), and enrich my relationships. Volunteering and writing are my solitary tasks. Relationships – now that’s something I work on with others. After all, everyone still alive is a survivor like me.

I try to ignore or manage the daily risks, live a meaningful life despite those risks, and to delay the certain end. That’s my current answer to the questions for life itself.

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.

Is peace a reward for patience?

German Israel lapel pin

Photo from thegalileeexperience.com/

Is peace imaginable even though it isn’t yet within reach? Is there a vision of what the other side of our current age of turbulence might look like?

The entwined German and Israeli flag lapel pin surprised me. Bigger shock; the lapel pin was on a German army officer’s uniform. I accosted the officer in our hotel lobby. Smiling, the officer explained.

“Israeli and German troops are colleagues. Training in Israel was the highlight of my career.”

Imagine. 70+ years ago Germany exterminated Jews and now they train together. Later, I hiked on the red soil of East Africa’s beautiful, peaceful Rift Valley. Imagine. 40+ years ago Idi Amin Dada took power and slaughtered Ugandans. 20+ years ago Rwanda was riven with genocide. Tourists on safari now watch big game roam where people once ravaged the land and each other. My mind whirled at the passing time and effort that healed three massacres with three reconciliations.

Peace isn’t evenly distributed and there’s never a guarantee of permanent peace. Peace is too big a miracle to expect in a world of escalating violence. Transforming societies post-genocide is not an overnight miracle. It’s many people working hard and forgiving the unforgettable.

Here’s my belief – no, more accurate to call it a prayer – as expiring 2014 bequeaths expanding war zones to incoming 2015:

History is dynamic; the future undetermined. People get exhausted with war, money for munitions dries up, governments change, dictatorships collapse, policy catches up with new realities, evil runs its course, and peace gets a chance. Unknowables include how long it may take and whether it’s minimal peace, or social justice with a real future.

At a personal level, would the cancer treatment that saved my life have been available if I lived in a war torn country? Probably not when resources are disproportionately budgeted to military over healthy people and environments, and education. Headlines in the global news include child soldiers, abducted girls, death from curable diseases, poverty, food insecurity, and many barriers to health and education. World-wide hatred, fear, distrust, and anti-Semitism abound.

And, in these amazing months of travel, I’ve seen resilient peoples rebound and offer a vision of what peace brings. Peace in East Africa has meant healthier children, opportunities for universal education, and awareness of environmental needs.

Since no war lasts forever, what sustainable vision of peace can we work for, each in our own way?

red soil

Queen Elizabeth National Park’s red earth, Uganda

Healthy Child Uganda

Healthy Child Uganda is an NGO helping mothers help families thrive.

Girls go to school, women in cities attend university and achieve high positions at work.

HCU clinic

Dr. Ida reviews the Impressive child immunization rates with Decker at a Healthy Child Uganda District Clinic.

Dr. Ida shows Decker the data

I got news that trumped Fear with Optimism

I met the man who owns my left breast. I chatted with a stranger who said he’s a Medical Researcher studying what breast cancers spread to bones. I said I’d donated the tissue formerly known as my breast to his research project. He said my breast’s in a petrie dish in his lab freezer, and I asked if that’s next to the vegetables.

He said he owes me because without tissue donations he has no research. Now that I’ve had time to process the encounter, I owe him more.

Fear of meaninglessness

I’d searched for the disease’s bigger meaning, overlooking I’d donated my breasts to science. Quadruple mastectomies, chemo and radiation hid the memory. So long as I got my breasts off my chest before they killed me, I didn’t care if they froze or incinerated. They weren’t coming home in a jar.

Now he’s given me hope my tissue can help, especially since the cancer was rare Triple Negative. Unintended, but he reduced my Fear the cancer meant nothing.

Meaninglessness of Fear

Like so many with cancer diagnoses, I experienced numb shock, waves of terror, and masses of esoteric information. Daytime, distracted and busy, I almost forgot Fear. But at night, or when tired, oh, Fear roared.

Where’d Fear’s dizzying power come from? How’d I let Fear dominate me into I’m-gonna-die, world-gone-nuts, paralysis?

Turns out, Fear, you don’t act alone, you get help. Lots of help.

Fear rides with powerful friends

Fear, you shape-shift as Triple Negative Breast Cancer or a herd of stampeding horses, or whatever terrifies. But you boost into big time with government, media, and corporate injections of Fear into anxious mortals. Election cycle, news cycle, and economic cycle – there you and they are, with thin explanations, replaying your message du jour.

Fear, you’re sometimes effective when people feel they lack power in uncertain times. Negative campaigns rely on you – Boo – we’re scared into voting your way, buying a product or service, believing a stereotype.

horse7

What’s the opposite of Fear?

The Medical Researcher invested me with Optimism in the best sense of the word: curious, and informed. Take that, Fear, and negative attack ads. I had Triple Negative Breast Cancer; I gotta have game. Fear, you’re a cycle in need of breaking. And I’m breaking up with you.

Now, I want a name for the state of non-fear. Dictionaries offer antonyms: courage, fearlessness, bravery. But those can co-exist within a stew-pot of fear, stress and anxiety. So they don’t fit as names for non-fear.

How about curiosity or optimism? Research suggests Optimism is both genetic and can be learned to shrink Fear, so I owe my grandparents too.

I’d welcome suggestions: what’s the name of this tentative state of being that’s the opposite of Fear?

 

Escaped from Death again, now exploring Life’s purpose

Death brushed me again, but couldn’t keep a skeletal hand on me. Stunned at the close escape, I clung to the mountain side as eight horses stampeded within an inch of me on the narrow dirt path. Their galloping hooves pounded choking clouds of dust into my eyes and lungs. Their sides were soaked from their hurtling run down the mountain ahead of the two gauchos pursuing them.

photo credit Evelyn Hoter

photo credit Evelyn Hoter

A few hours before, my hiking companions and I had seen the two mounted gauchos with their six pack-horses heave their way up the mountain fully loaded with supplies for the hut at the top. The eight horses laboured so hard they stumbled and the gauchos urged them with the Spanish equivalent of what our cowboys would in English. We’d already started down the mountain so stepped aside for less than a minute to let them pass.

We felt an urgent need to get to the bottom before we were stranded on the mountain. The hike over the pass and into to the valley had taken more time than anticipated, we’d started from Estancia Peuma Hue later than planned, chosen a more distant route than discussed, and we’d stopped at the mountain climbers’ hut longer than expected. We were late, dusk was punctual. Dark would soon make the descent treacherous.

the pass up; Brian M photo

Frey climbers’ hut; Brian M photo

climbing the pass; Brian M photo

me in the pass up; Brian M.

 

The path was wide enough for one person to walk at about a 35 degree pitch in some places, steeper than that in others. To the right was a fierce drop into a crevasse. To the left, the undergrowth was thick on the mountain wall. The forest was silent, and
smelled too dry.

our party’s scramble over the pass; Brian M. photo

 

I’d fallen behind the others, quads screamed in agony, knees too sore to bend, fiery pain stabbed my rigid hips, and toes hammered into the front of my hiking boots from hours and hours of rock scrambling downs steeper than mountain climbing ups. My left hand was scraped from clinging to sharp edges, my right was cramped in a vise grip on a climbing pole. Both arms ached from hauling my body over boulders. Everything except my earlobes stung, hurt, groaned, creaked or blistered.

And then, I heard the horses.

I looked back, my tired body twisted to see what was happening less than ten feet away.

The lead horse was unable to stop his mad descent, crowded from behind by the other seven. He was propelled along, two horses trying to pass him on a trail wide enough for one person. He tried to slow when he saw me and was broadsided from behind. His herd mates were running unloaded and empty towards their night’s rest and feed. They were in as much of a hurry for the same reasons as us, and much faster. The lead horse half-reared to turn, but had no choice except to continue galloping straight at me.

I ran. Not sure how, but it felt like a run.

“Brian, the horses.”

Iroamtheworld.com

Iroamtheworld.com

Brian McCutcheon heard my yell and turned. The danger was so obvious and the solution so wasn’t. Cliff down, rock face covered in underbrush up, or trampled in between. Brian must have assessed it all in less than a second.

The lead horse’s head was at my shoulder when Brian grabbed my left arm and the strap of my backpack. He threw me backwards and leapt onto the cliff after me. As my feet flew up, they touched the horse’s flank and the next horse thundered past and the next and the next … We had no place to move. As one horse hurtled past with empty propane tanks strapped around its girth, Brian shoved the tank away from hitting us. The two gauchos were last, still urging their lathered and exhausted horses forward. The gauchos were as motivated as the horses to get home.

Then they were gone in a dust cloud and we were left, shaken and unhurt. Had Brian taken a second longer to react, eight horses would have trampled over me.

Brian grinned. “If they’d been prettier horses I’d have grabbed one for you to ride down. They weren’t pretty enough.”

We found my partner, Decker, waiting ahead. They overtook him at a wider section and he simply stepped off the path as they barreled past. We all made it down, in the darkness, feeling our way after 14 hard hours on the trail, Brian’s iPhone our only light. Our wonderful hosts met us with flashlights and guided us to a waiting dinner.

A few years ago, Death in the name of late stage Triple Negative Breast Cancer had me in its sights. Decker felt something even though there was no palpable lump. The oncologist said that, untreated, Death was at most nine months away. Three days ago, Death was at most nine seconds away. First Decker saved me, and then Brian did.

So what am I to make of two such close escapes through the grace of two extraordinary rescuers?

What, I ask, is the purpose of the extra time I’ve been given? I’ve struggled with this as so many cancer or disaster survivors have. Where is the lesson, how am I different, who does it all matter to? The only answer that means anything to me so far is that I haven’t finished writing yet, or done enough for the environment yet, or seen our grandchildren grow up. Even these aren’t enough, so I search for more ways to be of use, to make a difference in this extended lifetime I’ve been gifted. I will write, do what I can for the environment and play with the grandchildren until whatever truth I’m supposed to know appears. I read of those who find their life’s calling from some horrifying misadventure.  If something’s calling me, I don’t hear it yet but at least I’ve woken up enough to listen until I do.

Today, instead of hiking, I went for a horse-back ride, a safe, controlled canter through the Patagonian countryside, to savor the joy of living.

photo credit Evelyn Hoter

photo credit Evelyn Hoter

 

Toronto Mayor Rob Ford’s Valentine’s Day simple rules for love and loyalty

photo credit: City of Toronto website

photo credit: City of Toronto website

I nominate Toronto Rob Ford as Valentine guru of the year.

No, seriously, he could teach Cupid. Buffoonery aside – and that’s a huge aside – his ability to keep voters willing to vote for him defies credibility. It’s what I find most astonishing – his self-imposed implosion and dizzying public unraveling hasn’t deterred his Ford Nation from believing in him. That means he has something to teach.

Had Mr. Ford behaved and been competent, no one outside Toronto would know his name. Now he’s stratospheric famous, enjoying status as a late night joke and top ten list attraction. How does he foster such devotion? Are other politicians paying attention? 

Clearly it isn’t his charisma and charm attracting such loyal and loving constituents. Then what, I ask, accounts for it? 

Rob Ford’s simple rules for finding and fostering love and faithfulness.

What I uncovered from Mr. Ford’s musing are life rules to follow for conflict management and living joyously. Surprise – it turns out Mr. Ford’s good, bad and ugly behavior all conceal useful lessons. It’s a shame Mr. Ford subverted these to the Dark Side:

The Good

1. Respond to people, such as return phone calls 

When his loyal fans and constituents explain clinging to his failed leadership, their refrain goes: “He called me back.”

2. Get involved in small problems people care about

Sure, people seek to save the world, but it’s problems on our doorstep that relegate the world’s problems to second billing. When asked about their loyalty, Mr. Ford’s constituents said: “He had an interest in my problem and tried to help me.”

3. Show up

He had an important title and lots of staff, but when he got a call from a constituent, Mr. Ford rang the doorbell. Those who plan to vote for him in his re-election bid maintain: “I needed a solution and he came to my house to discuss it with me.”

4. Have a clear message

Without more evidence, devotees believe he’s great because Mr. Ford says he’s wonderful and does his job well: “I don’t want to toot my own horn here but I’m the best mayor this city has ever had.” (from NewsTalk 1010, November 3, 2013).

The Bad

5. Pay attention

When Toronto City Council held a vote on honoring Canada’s Olympic athletes and the late Nelson Mandela there was only one vote against – Rob Ford. Upon noticing he was on the wrong side of no-brainer issues, he requested a revote to rectify what he claimed was a mistake. Consensus appears to be he voted ‘no’ because he wasn’t paying attention. People have compassion so long as we’re trying our best. Ford’s theory is that if experts urge you to get fit, eat better, pay attention, and be honourable, he’ll purse his lips, curl his tongue, expel a burst of air, and go ‘pthut.

6. Strive for a goal and then share successes and failures

We know 90% of New Year’s Resolutions are broken before January ends, but we make them anyway. We cheer for milestones along the way, and, most important, we tolerate slippage if we believe the person is striving to achieve the goal. We forgive failure if there’s a perception of effort.

The Truly Ugly

7. Be consistent

Toronto still functions despite the gong show at City Hall, but each exhausting eruption of bad behaviour and expiatory explanation drains its energy. The ups and downs keep everyone off balance.

8. Keep expectations reasonable

Communicate boundaries as well as openness, because people react badly when their expectations are disappointed.

9. Apologize as soon as you’re sincere

If Decker apologized to me so insincerely, one of us would sleep in the guest room. No one except die-hards in Ford Nation believes Mr. Ford’s delayed, vague and hollow apologies. Sincerity matters as much as the words.

10.  Hone good judgment

The questionable company he keeps can’t be justified with noble theory such as, ‘I don’t throw my friends under the bus.’ What’s being judged is that those people are his friends in the first place.

 I want my oncology team to adhere to these rules and earn my undying (especially the not dying part of ‘undying’) appreciation. And, this Valentine’s Day, these rules apply to Decker and me too. 

Bogart’s character Rick in Casablanca: is he an optimist or pessimist?

Photo Wikimedia Commons, Humphrey Bogart as Rick

Photo Wikimedia Commons, Humphrey Bogart as Rick

Rick says to Ilsa: I’m no good at being noble, but it doesn’t take much to see that the problems of three little people don’t amount to a hill of beans in this crazy world[1]

Then, Rick gets noble and becomes a bean that matters on a hill of beans. He leaves Isla and strides into the fog to fix the craziness in his little corner of the world. Cynical Rick? A hero? What the …? 

Today, Bogie leans against my kitchen wall; his eyes smolder in the shadow of his fedora; he snarls at me, “Sweetheart, if you can’t do much about how crazy the big world is, pick some little problem nearby.”

“Bogie,” I say, “That’s not nobility, that’s optimism.”

Pick a hill of beans

Like most people, I want a life that matters. Having come so close to dead, my quest to live that life has some urgency. Quick! Where’s the accelerated search engine?

Okay, it’s not my destiny to win the peace prize or cure cancer. But, what if Rick was right at Casablanca’s conclusion, when he focused on one little local problem with one small impact? The movie ends before we learn its bigger consequences, but it implies he made a difference. Or is that the optimist’s view? Rick changed his pessimistic outlook and affected – the audience is audacious with hope – the outcome.

Optimistic / pessimistic ambidexterity

What next? Chemotherapy imploded my natural optimism into a pessimism so deep I couldn’t recognize positive action if it stroked my face. I entered one Friday treatment believing the best would prevail. Sunday exhaled a swirling pit of panic and despair; a chemo-induced brain makeover in thirty hours that clung three years.

The upside is my brain now operates as ambidextrous, functioning in optimism and pessimism with equal dexterity. To paraphrase Sophie Tucker, I’ve been optimistic and I’ve been pessimistic. Optimistic is better.

Risk management is a conflict competency

Guess I should thank chemotherapy for the opportunity to live as a pessimist so I can weigh both options and opt for optimism.

Optimism is more than hope, or what I call the twin tyrannies of positive thinking and good attitude. It’s also risk management, which is a conflict competency. Recent research suggests that pessimism is an advantage because optimists depend on happy endings. Is this a fair categorization of optimism? Not all optimists treat lottery tickets as a retirement plan, just like all pessimists aren’t good savers for retirement. I seek to mitigate risk whichever outlook I use. Where optimism has it over pessimism is belief in my ability to make a positive difference in outcome. I’m more motivated when my outlook is that my actions might matter. So go ahead, buy the lottery ticket AND save for retirement. Integrate the inner optimist and pessimist.

Adapting to change is a conflict competency

And that’s a conflict competency; integrating the two outlooks is more adaptive than their competing for mental bandwidth. I had an example in conversation with my bio-daughter Beth.

“It scares and saddens me,” Beth said, “that my generation is the last able to do whatever we want. My son won’t enjoy that freedom.”

Pessimism reality check. History and experience suggest that Beth’s correct, everything we enjoy won’t continue. Optimism alert. Other enjoyments await.

Optimism doesn’t relieve me of the responsibility to leave my grandson a better world but it’s relief from pessimism’s paralyzing fear and sadness.

What’s next? Well, which problem should I prioritize for 2014: climate change, social upheaval, or 2013’s leftover personal turmoil?

Bogie tips his fedora, glides through my kitchen wall, and is gone.

Wonderful words from optimists: (or, words from wonderful optimists)

“Language is very powerful. Language does not just describe reality. Language creates the reality it describes.” ― Desmond Tutu

“How wonderful it is that nobody need wait a single moment before starting to improve the world.” ― Anne Frank

“Part of being optimistic is keeping one’s head pointed toward the sun, one’s feet moving forward.” ― Nelson Mandela

“The best time to plant a tree was 20 years ago. The second best time is now.” Chinese Proverb


[1]Casablanca is a 1942 film about an American expatriate owner of an upscale club and gambling den in the Moroccan city of Casablanca who meets a former lover, with unforeseen complications. Directed by Michael Curtiz. Written by Julius J. Epstein, Philip G. Epstein, and Howard Koch, based on the play Everybody Comes to Rick’s by Murray Burnett and Joan Alison.” http://en.wikiquote.org/wiki/Casablanca_(film)

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.