Trust the tail, the truth is there

“This little guy will save your life.” Between diagnosis and my first mastectomy, my partner Decker put his trust in a ten-week-old puppy named Trail to keep me alive. How’d that go? Well, Trail’s living large, having figured out my operating system*. Wow, imagine replicating Trail’s job style:

Self-written job description.

Trail lifted a rear leg on our pet expectations.

White Westhighland (Westies) need plenty of exercise and playtime … excel at agility, obedience, flyball, and other canine sports. These activities stimulate his bright mind and channel his boundless energy.

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Grey face

Yup, playful, agile, energetic, obedient White Westies. So says the website. Trail clarified our delusions starting with his breed’s name. White? Trail rejects White.

Trail hurtles himself hedonist-style, buries his nose and rolls, talking non-stop to the dirt, grass, or snow. He emerges joyfully, his coat drenched in goop, chlorophyll, or icy pompoms.

In a competition between a brilliant-white dog and a joyful dog, I relinquish roll control to Trail.

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photo: Cat Harbord

Be useful.

Trail matured with an unusual attitude and a secret identity, Rescue Dog. Trail’s rescues include:

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• Waking us to help a disabled house guest who’d fallen during the night.
• Diving into the water to help when someone toppled out of the canoe.
• Waiting at forks to guide laggard hikers on the right path.
• Running a black bear thirty feet up a tree in our back yard, where it clung while Trail barked and tried to climb after it.

When it seems he’s all about him, he accommodates himself completely to others.

unsure tail

Read my tail

Speak heart to hearts.

His responsive tail, bendable to his mood, telegraphs Trail’s emotions with an honesty that wrenches my heart. If I misread hisarticulated tail tail’s meaning, he’s kind and forgiving.

I want that collaborative heart in all my relationships.

 

scared tailalert tailneutral tail

Find fun everywhere.

Trail ignores me prance about with dog toys to entice him. “Poor pathetic human,” his eyes say. “So sad she can’t entertain herself sniffing.”

He retrieved ball and stick – one of each. The first ball I threw, Trail brought back in his little mouth and dropped at my feet. Trail stroked the lake until the stick I tossed was drawn to where he could reach it without getting wet. Both times I unplayful tailpraised, rewarded him, and threw it again. Both times he tilted his head as if saying, “I already brought it back, you get it.” I tug a toy and he walks foward holding his end.

So, he misses out on play or sport; he’s endless fun of his own kind. Avoiding one kind opens space for others.

Take my time.

Other humans spell w-a-l-k or their dog explodes. We excitedly say, “Walk”, and Trail lies down, chin on paws. “Okay,” he seems to sigh, “if you insist.” We ‘walk at a Trail’s pace’, more pulse than walk – shuffle, stop, shuffle, stop. Repeat.

An eighteen pound anchor on a rope, he’ll sit to watch any activity like his personal television, leaving me on standby until his program ends. happy tail

We should’ve named him Speedy since ‘Trail’ became destiny.

His nicknames include: Trailer; Trailing; and

Trail Mix (from his friend Cat, if Trail were trail mix, he’d be the premium kind with all sorts of great surprises hidden in each handful); and,

Trail Thunderpaws because he runs to catch up; and,

Trail Houdini when we backtrack to find him; and,

Princess Trail in kayak Princess Trail prefers human powered rides like stroller, kayak or bicycle basket;

Princess Trail

photo Beth Lawrence: Marcus ‘walks’ Trail

and finally,

Yoda Trail      Yoda Trail, for oh so many reasons.   Yoda

It’s our particular compromise, Trail’s and mine. He’ll eventually arrive, and I get to practice patience.

Live an authentic life.  

curious tail

Trail learns concepts incredibly fast, and, when inclined or not distracted sniffing every petal of every flower, he obeys the dozens of words he understands – eventually.

Maybe Trail is too smart to waste his boundless energy. He waits until we’re committed to a direction, in case we reverse and can pick him up on our return. He walks 4.5 kilometers to my five.

We’re sure he solves problems, counts at least three, and understands basic geometry and connectivity. He studied a cattle grid and then trotted across, each paw set confidently.

For errands and time sensitive walks, Trail tolerates a leash. He’s clear what he won’t tolerate. Trail intervenes like a mediator between dogs playing rough. If Decker and I split to do separate errands, Trail refuses to follow either of us.

Trail couldn’t fake it if he tried. His tail tells his truth.

concerned tail

Would it be helpful if people still had tails?

 

TKI preferences (Collaborating, Compromising, Accommodating, Avoiding, Competing).

 

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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.

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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?

 

Passing the Regret Test

Hallelujah. I graduated from the Breast Cancer doctor. Hugs, dancing in reception and NO next appointment. Bring on the morass of disability insurance forms. Do I regret my failed attempt to return to work? No, I love my job as a conflict manager and wanted to be there, though every day was a struggle and every walk home was tearful. If I hadn’t tried, I’d have wondered if I could, and I’d like to live life without such regrets.

Rubaiyat_cover

Omar Khayyám wrote in the Rubaiyat attributed to him: ‘The moving finger writes, and having writ moves on; nor all thy piety nor wit can lure it back to cancel half a line; nor all thy tears wash out a word of it.’

Sometimes it felt like the moving finger was a steamroller. There probably isn’t a mistake I haven’t made and tried to rationalize as the only thing I could’ve done under the circumstances (yikes, I fit in Self-Serving Bias). I thought to reach out to someone, speak a kind word, apologize, express love, and then didn’t do it, or didn’t do it well. I figure the moving finger ought to be more pious and witty in the first place. Then maybe I wouldn’t regret what I did or didn’t do.

270px-Murray_Gell-Mann_-_World_Economic_Forum_Annual_Meeting_2012

And for those times I’m at a bifurcation point, where once the decision is made it can’t be reversed, I’ve created a Regret Test, when there’s no eraser or do over. The decision becomes a ‘frozen accident’ (Dr. Murray Gell-Mann’s phrase). We should all be fortunate enough have such decisions that change the course of our own and others’ lives: the freedom to decide who to love, where to get an education, whether to take a gap year traveling or go straight into a job. Those decisions set a course where people meet who would never otherwise have met, live places never otherwise visited, and experience life in transformational ways. I’m always aware that it’s freedom and good fortune that allow these bifurcation points.

To take the Regret Test, I find a quiet comfortable mood. I imagine my deathbed at 120-years-old, my few remaining friends and family around me. With my last strength, I say: ‘I’ve had a good life, doing everything I wanted to do. The only regret I have is … ‘ Then I fill in the decision I’m trying to make. If it feels like I’ll regret doing or not doing it, that makes my decision clearer. It’s my form of penny spinning that the wonderful poet scientist Piet Hein grooked about.

A Psychological Tip

Piet Hein

Whenever you’re called on to make up your mind,

and you’re hampered by not having any,

the best way to solve the dilemma, you’ll find,

is simply by spinning a penny.

No – not so that chance shall decide the affair

while you’re passively standing there moping;

but the moment the penny is up in the air,

you suddenly know what you’re hoping.

Living without regret should be easier than it is. All the mistakes and learning are the legacy to me from that person I was and will be. The moving finger doesn’t leave behind a band-aid so my conflict competence first aid kit contains a penny and a Regret Test.

Breastless Love, The Man Who Stayed with the ‘Sick’ Woman

image

In my posts, the fact I stumbled upon the love of my life at age 58 was an aside, like Decker guided me through the cancer swamp as expected of an old stalwart. Reality check: we’re a new couple. He didn’t have much invested in ‘us’ when my breasts tried to kill me.

My choice was between breasts or death in four to nine months. Easy peasy. Decker got to decide whether to stick around for the medical crap. Whew; he chose to. Cancer support groups are filled with women whose partners left. Heartbreak on heartbreak. Like piling on in football without penalty for being last ‘man’ on the guy down. As if getting cancer was being unfaithful: “What – you went to bed with Cancer? How could you betray me with Cancer? Well, now that you’ve chosen Cancer over me I’m leaving.”

Women (or men, or children – cancer is so democratic) have to deal with threatened lives, medical uncertainties, activities disrupted, hideous side effects, and bodily insults. Then the person we count on gets a free pass on the blood, vomit, infected sutures, bulbs of sloshing lymph fluid, low blood counts, shakes, tears, pain, physical scars, and emotional turmoil. Jeez, how could anyone willingly give that a miss? So no one had to tell me Decker’s a gem for staying.

Diane and Dave, 1989

Our father stayed. My lovely sister Andria and I had a disabled mother who underwent countless medical procedures for multiple medical conditions and a constellation of physical complaints. Mom and dad’s mutual verbal abuse was so miserable some relatives refused to visit us. Yet, our folks stayed together until they passed away and, in Andria’s version of the story, they loved each other.

So I asked Decker, ‘what’s the reason you stayed?’ and his expected response: ‘I love you.’ Too simple? He said, ‘sometimes simple is true.’ Yet, an Internet search ‘men leave sick women’ reveals women are six times more likely than men to be left after a cancer diagnosis.

There are also same-sex partners, families, neighbours and best friends who are too busy or can’t accept the neediness of the woman who once did everything and now needs help. In support groups, I listened to abandonment SLS (Shitty Life Stories) and wondered how I was so blessed, in addition to Decker, with friends, family and neighbours who brought food, offered to shop, helped walk puppy Trail, and called to say hello.

There were delightful welcome surprises – my dear cousin BonnyBonny Gold-Babins and I became much better friends. She’d done her stint twice over nursing her lovely parents through chronic illnesses, and still had a soup pot of caring for me.

But other women similar to me weren’t so lucky. It’s easy to blame; we all have villains, victims and heroes in our SLS. BUT, I practice Appreciative Inquiry and I blog at the intersection of what Conflict Competence teaches about Living Breastlessly. Conflict Competence speaks to the quality of relationships we want whether we’re well or sick, or are the friend, neighbour, or significant other to that sick person. How do we make and maintain the loving, trusting, there-through-thick-and-thin bonds that sustain and nurture us even at our worst?

An Internet search for why people stay to help sick partners and friends turned up – wait for it – NOTHING. The focus of the research is on the negative, the losers, the leavers, and the lovers who abandon. They don’t have a name. The people who stay get a name that’s more a label: caregivers. A search about caregivers led to how to become a caregiver, government benefits for caregivers, products for caregivers, and managing caregivers’ strains and stresses. Staying with a sick person is both an act of love and a profession.

We could ask Appreciative Inquiry questions, and research men’s reasons for staying to learn how staying can be an easier and higher quality choice. What made my father stay with my mother, particularly since they fought just about all the time about almost everything? What did Decker see that made the love worth hanging on to? And let’s get to the real heart of it: What can I do, every day with every person I treasure, to let them know I love and value them, appreciate their qualities and forgive their shortcomings if they’ll please forgive mine?

here’s more Decker celebrating the 60s at his 60th:

Decker at his 60th in a wig copy

Standing up to bullies or cancer with a power stance

During cancer treatment and ensuing brain fog I couldn’t read, write, or converse so TED’s short talks were perfect. I watched Amy Cuddy’s TED talk again and again, thinking Amy’s – after so many viewings I feel I know her – research has so many uses, from addressing bullying, to healing, to upping my conflict competence. In nonlinear fashion, power poses cycled through my thoughts into brief ideas.

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j0186176_2f5ce440Amy’s work continues the study of the mind-body connection, which has lots of science, wisdom and other evidence to back it up. That part isn’t new. During the cancer treatment, I had at least two dramatic experiences of this connection. I used my mind to ease a procedure that wasn’t going well. I was to have a PICC line (peripherally inserted central catheter) in a vein. The chemo was so toxic it would’ve blown out the vein had they injected it without the PICC. The nurse specialists tried to insert the PICC and the line hit a wrinkle in my vein, bending up instead of sliding through. A fifteen-minute procedure was into its first hour. The nurses looked more than a tad concerned. I meditated on the vein and the line slid into place. The nurse told Decker she reported this and suggested  patient meditation be included in the procedure manual. The second time came well into the chemo treatment. My blood was so low the oncologist scheduled a transfusion that would have delayed treatment a week. They said blood counts don’t come up with that chemo cocktail. I asked for time to use my Inner Healer, named Terry Gold, and then had another blood test. My count was up. The treatment went as scheduled.

The variation Amy and her co-researchers further of this knowledge of the interrelationship of minds and bodies is that body postures affect feelings of power. The (unfortunate in my opinion) name Amy has given this is Power Poses. I have other thoughts on overuses, misuses, and abuses of power, including that aggressive people affecting poses in the belief it will infuse them with power is indeed scary. However, the idea that even a few minutes of standing or sitting in a certain pose can change an interaction and how my mind functions also has positive applications. It would be great to have this information in the right hands.

Bullies are news again damn it, because of Amanda Todd. What, I wonder, would be the effect of teaching the victims how to stand and sit in order to stand up against their bullies? Bullies seem to know this instinctively and don’t need more power. They’re getting power over their victims already. (I wonder in what poses they stand and sit? Now there’s a research project begging to be undertaken.) Others could sure use some help in feeling more inner power. Could bystanders be empowered to stand up to the bullies?

The body healing the mind has opened up new ideas for how I can stay in remission, the ways I can help my clients, and where I can improve my relationships with others. My conflict coaching clients stand (pun intended) to benefit when I suggest they observe how they and the other person stand and sit alone or in relation to each other, both in calm times, and when locked in conflict with each other. And, look for me to take a stand of power against my personal bully – triple negative breast cancer recurrence – on those now rare occasions when I’m tired and have bleak thoughts about my long-term survivorship. I’ve added body over mind poses to my toolkit of Inner Healer and mind over body strategies to overcome those thoughts.

Cancer’s a game changer but I’ve still got game

The new year is almost on us. 2013 was supposed to be the summer I graduated with a Master of Fine Arts in Creative Writing (to add to my 4 degrees, a girl can’t have too many). My secret dream was to enroll part-time while working. Instead of university studies, my 2010, 2011, and 2012 summer vacations paralleled which body part was being assaulted, and I had only medical, laboratory and radiological studies.

2010 was the summer of breasts and lymph nodes.

2011 was the summer of exhaustion and paralyzing fear.

2012 was the summer of brain fog and confusion.

Now I’m aiming for 2013 to be the summer of love and publishing.

2010 was a game changer, the kind of shit kicking where it would’ve been preferable to have a bully beating on me so I could put a face on my abuser. Cancer has no face. It beat me up from the inside out. There was no one to fight back against. I couldn’t dash out the back door, or turn off the computer to escape. It wasn’t lurking around the corner waiting for me; it skulked and stalked inside me, waiting, bidding time, looking for vulnerable places to root, grow and kill. It’s a bully that doesn’t mature in a good way.

Summer 2011 crawled over me like a bulldozer and I crawled through it. For months I dragged myself to work five days a week, cried throughout my walk home, and was catatonic with anxiety about cancer’s return during the hours in between going and coming. My words were insensible, my thoughts a muddle, and my work substandard. If I wasn’t in bed before 8 PM cancer grinned and looked around for a comfy place to plant. I panicked if I got stressed or overtired because those were cancer’s nectar and ambrosia.

Somehow, I got through to spring 2012 before I screamed for help. After three health care professionals recommended I lay off (the fourth suggested I quit and find my bliss elsewhere) I caved in and took a leave of absence starting 1st April 2012.

The summer of 2012 was a game changer. The leave of absence meant I finally had enough rest, alone time to meditate, exercise time to get physically back to my normal self, and enough mind recovery from brain fog to again enjoy conversation with people. I went weeks without crying or paralysis. I could read simple novels and write stories again, listen to the radio without overstimulation from endless words I couldn’t follow.

The only time I still feel the old bleakness is when Decker wants me to linger with him in nature when I’m hungry for a meal, or to stay up past my limit because he’s having a good time, or tells me to have some great food because it has only a little bit of a forbidden ingredient in it. Then, I hear the dire voice whisper, ‘does he care if I live or die?’ Where last year it was more than I could bear and I had meltdowns of hysterical proportions, now I just tell him what I’m doing. ‘No, I’m hungry and I have to eat before my insulin spikes and the cancer comes back.’ and, ‘No, I’m glad you’re having a good time but I’m going home to bed before I get overtired and the cancer comes back.’ ‘No, just a little of that food is enough to feed mutations so the cancer comes back.’ Yes, I’ll be rigid for the next six years I’m most at risk so that I can live to enjoy other pleasant evenings with you in years to come.’

Now, when the voice of anxiety about recurrence whispers I can hush it. The dire thoughts may come and I have most of my resiliency back to cope with the message. I have a message back for it. ‘I’m doing all I can to stay in remission. whatever happens, I can deal with it. In the meantime, I have a future to live and a grandson whose wedding I plan to dance at.’ And, somehow, I’ll get something creative written for the summer of 2013 because it’s my summer of love. That’s how I intend to change this bully – with love.

Enjoy the images. What are your plans for 2013?

Remission’s just another word for nothin’ left to lose

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clip art credit clker.com/

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photo kriskristofferson.com

Kris Kristofferson wrote in Me And Bobby Mcgee: ‘nothin’ ain’t worth nothin’ but it’s free,’ In the midst of so much bitter debate over free universal health care, free is worth a lot. When it came to treatment for a nasty, rare breast cancer, I had ‘nothin’ left to lose’. I selected an expensive course of treatment and, at the end of my years of living medically, no one handed me a bill. They cheered and waved goodbye.

Is this possible – timely, excellent, appropriate health care for ‘free’ or was I hallucinating? The drugs weren’t that type. The policy answer for how ‘free’ timely, excellent, appropriate health care works is that money from everyone’s taxes is allocated towards universal free health care. Blah blah. The human answer is that free universal health care works because people make it work every day in doing their jobs despite the administrative turmoil around them.

On the cancer conveyor belt you meet everyone on the belt around you. It’s like an exclusive club – if you belong, you’ve got the status of everyone else holding the red cancer membership card. It’s a twist on the joke: ‘I wouldn’t join any club that would have me.’ We have a club that doesn’t want members, and no one wants to join. But, if you need it, it’s welcoming and you’re grateful.

Members of the Cancer Club talk all the time. It’s impossible not to. We’re all anxious, naked under thin gowns, lined up for our turn i the schedule, and in need of bucking up. I sit down, the bald lady next to me smiles and the game is on. What flavour is your cancer? What number treatment or test or exam is this for you? How’d your last one go? Who’s your doctor or technician or counsellor? And so on. So, I have a lot of anecdotal evidence that I wasn’t the only bald, underdressed, anxious person who was happy with the care at Alberta Health Services.

Here are two stories, one from the professional aspect of our free health care and one from the personal side of the experience.

The timeline from suspicion, investigation, diagnosis and treatment went without a delay. At first, my partner, Decker, and I thought the hour of specialists’ time at each appointment was extraordinary. But no – everyone had the same experience of doctors who answered every question. We all had the same story – competent, compassionate, high quality care with no delays. And it’s the same level of care no matter the level of income.

The second story was from the Peter Loughheed Health Centre when I woke up from surgery ravenous after almost 20 hours fasting, only to find there was nothing for me to eat. The patient kitchen was closed, Decker had gone home to care for Trail, the 11-week-old puppy, and I was too groggy to walk to the public cafeteria. The ward clerk, who earns a modest salary, heard about my plight. On her break, she went to the public cafeteria, bought me something, and had the attending nurse give it to me. The nurse was the one who told me the ward clerk had done it anonymously.

The debate about Universal Health Care focuses on what’s wrong. Well, there’s also a lot right. For all the extravagance in the administration of the health care system, there’s an employee in the system who pays out of his or her pocket for a hungry patient. The system works because the people on the front line know what to do and how to do it, and know when to ignore the upper layers who are purportedly in charge.

With all respect to the extremely talented Mr. Kristofferson, who wrote a wonderful song, there’s no damn way I’d trade all my tomorrows for a single yesterday. And thanks to the fabulous care I received from the front line workers who don’t let the chaos at the top get stop them from delivering superb care, I have many tomorrows, none of which I’d trade for anything.

There’s a lot of great care happening as well as a lot of conflict in health care. The norm in conflicts is to focus on what’s wrong with everyone else’s system while defending one’s own. It’s easy to sit in judgment of who has the best or correct or right way of doing things, or feel compelled to tell the other persons what you believe is their best or correct or right way they ‘should’ do things. In conflict, people drive the system and the system amplifies or dampens the good things people do.

As a conflict manager, when I’m looking at systemic issues, I start with the people who are doing a good job and ask ‘how do we get more of that?’ That’s the Appreciative Inquiry approach. Instead, the powers that be order expensive public inquiries into what goes wrong and how to get less of whatever that turns out to be.

If, heaven forbid, I slip out of remission, even though there may not –at this time – be anything medically that anyone can do, the personnel in the medical system will persist in treating me, knocking themselves out trying to save me or give me more time or improve the quality of my remaining life. That’s worth something and – where I live – it’s free.

Here’s Kris singing Me and Bobby McGee:

http://www.youtube.com/watch?v=BG2kq-4dM98

 

BOGO, would you like a double with that mastectomy?

Buy one get one (BOGO): a double mastectomy instead of a single?
I’ll negotiate anything and it helped me through this. I tried to negotiate with Jeanie Kanashiro, the wonderful surgeon. I knew, in spite of the negative test results, my right breast was as unhealthy as the left. Jeanie made a counter-offer. She’d take off the left breast 28 August 2010. She’d amputate the right breast after I finished treatment  in April 2011.

Even though I didn’t agree I was persuaded: If I got post-surgerical infections that would delay chemo. Jeanie had experienced women mourn the loss of a breast. The right breast could come off once I knew how I’d react to losing one breast, much less two. Except, I did know how I’d react. I didn’t give a damn. The tissue formerly known as my left breast tried to kill me. A lump of fat with cancer isn’t something to be sentimental about in my world.

Call me in April, Jeanie said. In January 2011, I made an appointment for February. I was still in chemo but knew the date it would end. Jeanie’s secretary, Sherry, had to be sweet-talked into giving me that appointment. I won’t flatter it calling it a negotiation. I sucked up.

At that February exam Jeanie didn’t have a chance. She signed the form and told me to call Sherry in April to start the surgical booking protocol. I called Sherry the next day. Jeanie didn’t have her operating schedule and I still completed the booking protocol. Sherry said she’d never had a patient do that. Maybe she hadn’t a patient so certain her right breast was lurking and biding its time to complete what the left breast started.

The right mastectomy, finally, was 28 April 2011, and  official pathology was “no convincing evidence of cancer”. As Jeanie predicted, if there had been cancer the chemo blitzed it away. The right breast had the same micro-calcifications as the left had in June 2009, which I’d been told was nothing to worry about and was stage-III cancer by June 2010. The classification of the right mastectomy as prophylactic removal of a healthy breast, I call bullshit; it wasn’t a healthy breast.

In this whole gimish, I melted-down twice.
The first was 29 August, 2010 when I saw tubes coming out of my side, and bulbs leaking blood and lymph fluid. I fell to the floor weeping and Decker’s best comforting was futile. I was inconsolable. The scar, the tubes, the drain, the pain, the leaking fluid, the near death experience – was overwhelming. I’d never taken good health for granted. I was grateful every minute of every day for a strong body. I’d broken bones, been in a wheelchair in 1995, and had periods bedridden. This was different. My life was at risk. I sobbed.

Then I cleaned up the mess, measured the amount of fluid to write in the chart, and got on with my day.

The second time I sobbed as hard was when Decker touched my chest after the left mastectomy. I lost all grip on what was important and cried myself to sleep while he held me. Not because the left breast was missing, but because the right breast was still there. In the morning I couldn’t reclaim the sadness; it was slept away.

After the right mastectomy I asked Decker: “how does it feel to stroke my chest?”
“Flat,” he said.
We giggled into hysterics in the dark.
“Do you miss my breasts?”
“I’d miss you more.”
Great answer Decker.

I can negotiate through most systems – I’m still learning how.
The psychologist tried to get me (in 3 sessions at $175 per session) to deal with my grief of loss. No matter how often I told her I didn’t have any she kept talking about grief and loss. She said my ‘denial’ of grief was a problem. Problem? For who? I didn’t go back.

There have been times I thought my clients might be avoiding the real issue of their conflict. I’d like to think that on those occasions I kept my judgment to myself. Certainly that’s what we teach people in our conflict management courses: that the parties have self-determination and the conflict managers’ opinion of what they ‘should’ do is irrelevant.

When I get back to work I’ll remember the experts whose experience told them they were correct while I wanted something different. I had the balls to stand up to them because I’m a trained negotiator. Not everyone is.

I don’t want to be an ‘expert’ who stands between a client/party and the solution they want, even if I have doubts they’re doing the right thing. I know now how that feels.

Yes, I can handle the truth. I’m a conflict manager

horseshoe‘With luck’, the doctors said, ‘you’ll have (this) and not (that).’ I learned the ‘with luck’ was bait, a ruse to lure me into hopefulness. Sure I had breast cancer; lots of people do. My family doc got to tell me it was grade3/3 (most active) and in 9/10 biopsy samples (it was everywhere in my breast) and I was ER and PR negative. That means the cancer lacked the receptors that state-of-the-art cancer drugs hook on to. Bottom line, the drugs to keep me in remission don’t (yet) exist.

En route to the first mastectomy the conveyor belt had lots of pit stops. My favourite was on my tummy on a bed with a circle cut out of the mattress. The hydraulic lift hoisted the bed for the radiologist to work on the dangling breast. There’s no way to keep a straight face when an unseen man tickles your boob as it obeys the law of gravity. Then there’s the sentinel node and the staging and the genetics and the blood tests. I got my first cell phone to keep track.

Not only was the cancer grade 3 of 3 (should I be proud it’s a super-achiever?) but each grade has 3 ranks and it was at the top end of the third category, = 9/9. That’s known in medical jargon as “a bad actor.” Darn. I’ve taken acting lessons and had so hoped to be good at it.

I learned about researchers seeking breast tumors and donated the tissue formerly known as my left breast (now there’s an image – my breast in a petrie dish). It was satisfying to wake up from surgery thinking my breast had found a good home. “Yes”, said my daughter, Beth, “In the science freezer next to the peas and carrots.” Fingers crossed my rare tumor to play with helps them help other women.

Jeanie KanashiroJeanie Kanashiro, the wonderful surgeon, asked how she should tell me the pathology results. I said: ‘I’m tough, give it straight up.’ Whew, whenever the results could’ve been on a continuum of not so bad to awful, they were awful. Here’s what I recalled Jeanie said when I regained consciousness: “You’re stage 3, possibly stage 4. You’re Triple Negative so there’re no post-treatment drugs that’ll work for you. There wasn’t a clear margin to the chest wall, which means I couldn’t get it all. I felt nodes in your axilla (that’s an armpit) I think are cancer but it would leave you with a painful, nonfunctional arm. I opted to leave your tendons and nerves intact and trust the chemo and radiation will get what I left. In this case, the surgery was diagnostic, and the chemo and radiation will have to be curative.” I said, “Thanks; you made the right decision. Can I eat now?”

I could see everyone’s look when they talked about Triple Negative Breast Cancer (TNBC), but what was ER, PR, and HER2 negative? I’ve been such a positive person, how did I incubate such a contrarian cancer?

What I learned about TNBC nearly felled me. The four common words in the research articles were: “bad outcomes” and “poor prognosis”. TNBC is a recently identified, aggressive breast cancer subgroup, hard to treat, comes back often, kills fast. Well, fast is better than lingering. I delegated reading the literature to my partner Decker.

danielOncologist Dr. Danny Heng, set me at ease. He said, ‘The answer to most questions about TNBC is ‘I dunno’.’ Thereafter, I’d ask a question, he’d grin, shrug, and we’d say together, ‘I dunno.’ It worked better than false hope and bullshit. The answer to most questions in conflict management is “it depends” so I’m okay with ambiguity. Thanks Danny and nurse practitioner Cindy Railton, for your honesty.

Danny gave the ‘do nothing’ option, in which case I had between 4 and 9 months. Eliminate that. No one knew the best treatment so I went for dose dense, the most toxic and most treatment cycles on a guess backed with prayer and a phone conversation with Canada’s TNBC expert, Dr. Rebecca Dent. Thanks to my sister Andria, and Dr. Neil Bernstein for facilitating that connection. Decker and I had many conversations cuddled at night, struggling to decide. The cliché ‘as if your life depended on it’ hung over our heads. If it turns out dose dense wasn’t the right answer, well, my bad.

pills & needleTreatment ended; I asked about follow up. Danny said, ‘there no need.’ I was stunned. TNBC is a bad actor that adapts to chemo and lives on to recur. And Jeanie said she didn’t get it all. Isn’t the received wisdom to find it early? Danny explained, ‘Find a recurrence early or late; the outcome’s the same.’ It took a full minute to comprehend. How long would I want to know I’ll die soon?

I insisted on being followed anyway. The cancer was triple negative and I remain triple positive. After all, I got the sexy new variety, the cancer interest du jour, the tough subgroup everyone wants to conquer. If it recurs, someone somewhere will have something new. I just have to stay alive long enough to die of other causes.

In conflicts, everyone can agree on the facts and disagree over what those facts mean. In the process of managing conflict, we hear everyone’s Truth. The search for the truth about cancer can be like that. I might have had a diagnosis of TNBC, a bad actor, but the script of that play is still mine to write. I’m not searching for the Truth of the diagnosis or treatment; my theatre of life is about – as my hero Viktor Frankl taught me – the meaning of all this to me. There’s a workshop I’ve delivered on choosing your conflict attitude. Conflicts and problems are what happens in life;  reaction to the conflicts and problems are within our control. Cancer – all three kinds – chose me. I get to choose my attitude to it.

Breaking the news I had Triple Negative Breast Cancer

There were three reactions to my telling people I had cancer that I’ll share so you don’t ever, ever, ever offer them as useful to someone with a life threatened or game changing future.

First, I had to tell folks. My wonderful big sister Andria is a magnificent force of nature; my mentor and tormenter. As a voluptuous 15-year-old to my gawky, thin 12, she’d say: “What do you want, a medal or a breast to pin it on.” I reminded her of this and added: “I’ve finally got breasts, and they’re trying to kill me, so now I’ll take the medal instead.” Andria was on a plane to Calgary 2 days later. For the most part, I felt loved and supported.

Those nearby I could tell in person or with a phone call. Those farther away got an email, subject line was: All’s well except for the breast cancer. It got many great reactions, ranging from Steven Loble in London, England who wrote a simple, “AW SHIT!!” to encouragement, and offers of – mostly contradictory – advice.

Then there were the unhelpful reactions. First among these was to negate my feelings, the importance of not feeling the way I was feeling at the time, or to feel more of, or different than, or some attitude that was going to save me because they were saved that way, or heard about someone who was, or read it somewhere.

So, here’s the thing to know: how I felt at the time was how I felt at the time. It wasn’t wrong, or bad, or going to affect my life span. It was just part of the process I experienced at that moment. It would change soon – guaranteed – depending on where I was in the chemo cycle and chemo-induced acute pain syndrome and the mood alterations from the drugs, their side effects and the latest news from the lab. Hang on tight friends, treatment’s a wild emotional ride. Rather than be slave to what I call the twin tyrannies of positive thinking and good attitude, I change the subject.

The second reaction to edit out is related to the first. ‘I know just how you’re feeling because …’ and followed with ‘because I have a paper cut that really hurts,’ or ‘because my neighbour’s wife just died of breast cancer.’ Thanks for sharing, but if it’s okay with you, save your troubles until I feel better. I’m happy to listen when I have energy to spare.

The third reaction is possibly dumbest, just because it’s so common: “Well, I could be hit by a bus tomorrow.” As an aspiring writer, I’m appalled a cliché is intended to be helpful. Pleeze, think of a fresher metaphor for the fragility of life and that everyone is a diagnosis away from potential disaster. The first few hundred times, my response was polite acknowledgement they were trying to say something – anything – to show they understood what I faced.

The next hundred or so times I didn’t hold back. No, the risk of being hit by a bus isn’t the same thing, and to say it is shows no frickin’ clue about triple negative breast cancer that really likes to be deadly. I can manage the risk of stepping off a curb. I can look both ways for the damn bus. I can cross at an intersection on a green light. If the bus comes out of thin air I can jump back to the curb. I can do Risk Management for a bus. I had no cancer risk factors, pre-dispositional, genetic, or lifestyle and I got breast cancer anyway. No amount of risk management could stop it coming at me from thin air and there was no curb to jump back on. There’s no green light or crosswalk option for me now, or get out of jail or free pass for my breasts going crazy on my chest and spreading the insanity into my lymph system. So, unless you plan to throw yourself off the curb under the bus, it isn’t the same.

My friend, Rose Boll, author of an award nominated young adult novel called The Second Trial, reminded me that it isn’t useful to write what not to say and sign off. Of course, duh, slap forehead with hand, I know that; I practice Appreciative Inquiry, and the reframe of the negative to the positive and etc, etc, etc. Thanks Rose, for reminding me to use in writing about Living Breastlessly what I know from Conflict Competency, which is the point of this blog. So, here’s a suggestion on something potentially helpful to say. At the Tapestry Retreat, March, 2012, there was a session on important conversations, including a chance for each person to say:

thank you

please forgive me

i forgive you, and

goodbye

I guess you modify it for each situation and it’s helpful to do empathetic listening, which is nonjudgmental acceptance of what the speaker says.

Risk management is like conflict management and crisis management: genetic triplets in many ways, and distinguishable in when to apply each. Like cancer they operate on a time series. I manage risk proactively to prevent problems from arising in the first place, deal with conflict if it presents, and apply the right strategies should the situation turn into a crisis.