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?

 

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.

Worlds in our words

My resolution for 2013 is to not wage a courageous fight against breast cancer. I decline to be a soldier in the war on my disease. Nor will I win or lose or survive any struggles as a crusader on a cancer campaign. Count me out as warrior woman battling cancer.

Words are insights into worldviews. The metaphors I prefer involve collaboration and caring, not fear and fighting. The many who saved my life are my team, not my army. Confrontation doesn’t capture my cancer experience and combat doesn’t describe my mindset. Winning or losing to cancer is a random crap shoot, not something I do to or for myself. My strategy for staying alive involves love, meditation, nature, and good deeds.

A fighting mindset feels taxing and fixed to me. A peaceful mindset imports space for growth and adventure. Travel I once managed easily now exhausts me, but I find energy in how people create quality of life on this small planet. In particular, the wonderful people of Taipei, Taiwan inspired me with their tenacious individual improvements of a challenged environment. Here’s what made me happy as I wondered around Taipei.

taipei-2010

http://www.globalphotos.org/taipei.htm Taipei is a megalopolis. Hovering towers rest on unending concrete and asphalt. People live in stacked high-rises. No matter how dense the district and how little earth poked through the pavement, people put a plant or tree somewhere.

alleyBack alleys with buildings abutting the road sported a narrow line of vegetation. Streets with no pedestrian sidewalk had tiny potted gardens. Huge apartments so close together they got little light had greenery cascading from the balconies. The roof of our rented condo boasted an allotted garden for each suite.

Even in this busiest of metropolises there’s nature in cracks in the sidewalk or out of walls as I photographed in Hong Kong. This picture is oriented correctly and that is a wall not ground. I couldn’t stop looking at this tree as traffic whipped inches away.

tree on wallNo surprise that being in nature is a life affirming metaphor that crosses cultures. When it comes to resolutions for the year, my personal health issues are on my mind as is the health of the planet. Small gains towards peace and health are possible, word by word, positive action by positive action. Peaceful mindsets – not fighting ones – will heal the world’s trouble spots. As our world’s health goes, so we go.

I’m blessed to witness how conflict management improves lives, including my own. It’s been years since I’ve used ‘neutral’ to explain mediators’ work because ‘impartial’, as in balanced, is more accurate. Winning and losing doesn’t figure in my work or in my plan for my life, however long I live.

My wish and resolution for 2013: even though there are many types of carnage, may the words and worlds of nature and peace flourish for all, like trees growing from cracks in the wall.

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.

j0186152_2f5bc150

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.

My body reminds me of Poland

Poland is where my maternal grandparents were born. It’s a piece of north, central European real estate where marauders fought over who’d own its turf and what emperor or king had the biggest whatever.

Just like Poland was the site of waves of invaders, winners and losers, so my body’s had its invasions, real or perceived. I’ll clump the invasions into categories in order: family of origin anger invasion, the teen years puberty invasion that laid the groundwork for the dating invasion and baby invasion and maturation invasion in preparation for the mutant army of menopausal invasion.

I can enumerate which invader left which collection of scars and bruises in each spot on my body and spirit. But, like Poland, I bided my time and became sovereign over myself. Until that latest ravaging bitch of an invader described as Emperor Cancer hit me with a full frontal assault.

As an invader, cancer is Attila the Hun for its scope of ambition, the Crusaders in its belief of inevitable victory, and the Borg for its ruthlessness. All this dressed up to party in my own cells and organs, leaving the essential me with the morning after hangover while it had the great time. But hating the cancer would be like hating myself. That’s my tissue ravaging my tissue.

Here’s the thing: cancer and wars cause mayhem and destruction wherever they touch. I learned from all these invasions, hopefully became a better person because of them, grew and developed into a person I wouldn’t have become without them.

Just as helping a struggling chick prematurely break out of its eggshell may seem like kindness, it dooms that chick to weakness and deformity. I decided to use the cancer experience as part of my life journey and I can be grateful that it strengthens me.

Conflict managers focus on positive possibilities. So, rather than waste precious energy on fighting and battle language, I’m gonna love my immune system to full strength to keep my barbarian in check.

Google, that self-appointed interpreter of all matters cultural, tells me the Polish word for ‘love’ is miłość. Good to know.

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

children-singing-md

clip art credit clker.com/

Unknown

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

 

The advantages of chemo brain fog

Prior to the cancer treatment, I walked around with ideas and thoughts like a full cast of characters chattering away in my head. Suddenly, I might as well have been in opening night of a play with a full house and I was the only cast member without a script. Here I am trying to follow a conversation – people were saying blah, blah, blah. Me figuring out what to say in response – confusion and silence – duh nothing going on in my mind.

All these months I’ve been whining about chemo related loss of the useful working part of my brain. As Decker said one evening: “I don’t know what the hell is going on with you,” when he tried to talk to me about some radio news item and I cried in frustration that he was asking me to think. I didn’t know what was going on either.

Some nice people kindly said they didn’t notice I wasn’t engaging in conversations. Hmm, does that mean I didn’t make sense even pre-diagnosis ? It seems even those close to me couldn’t see the struggle I had to function at what felt to me like a fraction of the real me. Apparently, the difference between my cognitive capacity pre and post diagnosis is, ironically, obvious mostly in my own mind. Wow; what an opportunity to reinvent me while no one notices. Stay tuned, as a  project on my ‘to-do’ list: create secret identity, or morph into different person, or gain super power.

There were some tangible losses. I couldn’t listen to the radio and spent days in complete silence. The soundwaves were intolerable for the overstimulation of thinking about the words coming through the air. I skimmed newspapers in under five minutes. Although reading has been a great pleasure all my life, since the diagnosis I couldn’t focus enough to read a book (sob), or concentrate on completing sentences to write anything worth reading (sigh). Months passed as I gazed, cat like, into middle space, staring at nothing and the days went by.

And then, the fog began to lift. I could form a coherent sentence. Decker and I conversed over dinner again. What a joy when I had my first dream. I couldn’t wait to tell friends (some of them were sweet to care) that I dreamt at night. What I dreamed wasn’t the issue – I had a real dream, in colour, with dialogue and action. I was thrilled.

Andria, my lovely big sister who flew across the country to be with me for the first mastectomy, has morphed from my support to my book pusher. She loaned me three novels she’d enjoyed and found easy reading: The Language of Flowers, Snow Flower and the Secret Fan, and Secret Daughter. I was reading again and Andria keeps the books coming!! Thanks dear sister. Such simple delights. and I tried writing. Is this any good for the reader? Can’t say. Don’t know if anyone but me will read it and don’t really care. Its value to me is in the exercise of writing. I’m writing!! My brain is engaged. I reread Rebecca Saxe of M.I.T. Saxe Lab on the difference between the brain and the mind. If you haven’t read anything Professor Saxe has written, or seen her on TED talks or MIT Ideas Lab, well, there’s pleasure you still have in store.

Next, I tried complex tasks and doing more than one thing in a day. Yes!! Success there too. I was ramping up for a return to paid work. It was all good.

When I couldn’t get to sleep one night this week, I was mystified. I fall asleep instantly. It took me a while to figure out what had changed. What a shock: the flip side of not having any serious thoughts for two years – nothing worried or stressed me enough to keep me awake at night. I couldn’t hold a worried thought through the brain fog. Eyes closed, I slept. No dreams, no cares, no ideas to write down in the dark so I wouldn’t forget them.

What a bummer. For two years I complained about brain fog and slept peacefully through the night. The brain fog is lifting and I’ve rejoined the masses of those whose sleep is disrupted with thoughts they can’t silence.  I guess the joke’s on me.

When my mind had nothing happening in it, meditation was easy to practice: I didn’t appreciate that I was enjoying a chemically induced quiet mind. Instead, I framed it as not thinking and whined about it. Now that my thinking is clearing I have a baseline of what a quiet mind feels like. It’s sure different than the usual mental chatter that’s coming back. Mental stillness brought on by a meditative state (rather than toxins) has become a new goal for me. It’s a target I’d recognize because I experienced it artificially. Thank you cancer treatment, for the gift of having known a quiet mind that I might be able to achieve again with continued meditation practice.

I guess that’s the difference between knowing what to do and experiencing the doing of it. When I teach conflict competence’s common sense skills, I emphasize that people have the skills and use them daily – until threat, diress and stress make the skills inaccessible. Part of conflict competence training is accessing the skills that we all possess in calm times,  and being able and ready to use them as conflict arises. Conflict tends to drive our skills away because our thinking is reduced with high emotion, defensiveness, and surprise. Like my conflict studies students, I’m practicing skills in calm times, so that I can access that desired state during times of stress. Sleep well friends.

 

true story, rebecca saxe, andria spindel, conflict management, double mastectomy, breast cancer, triple negative, conflict competent, chemo fog, chemo brain, brain fog, writing, health