my monkey brain

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(Warning:  this post is a rambling mess, just like me).

The other day I spent the entire afternoon at the botanical gardens.  I had my Vancouver Trees book clutched in one hand and my umbrella in the other as I wandered around identifying flowering trees in the drippy rain.

In doing this, it struck me that since my diagnosis three months ago, my world has either gotten very small – say about 2.8 cm (the size of my tumour) – or very large.  I don’t know the answer to this, just like I don’t know the answer to anything anymore.

I typically write essays that have a definitive beginning, middle and end, like writers are supposed to do.  Marry that up with a couple of poignant life lessons, and voila:  there’s a tidy story I’m happy to slap my name on.  Lately, I don’t even think in complete thoughts, never mind poignant life lessons.  My mind jumps around like this:

-What did I do to deserve cancer?
-Is it going to rain today?
-Why is the cancer research building so fancy while the patient treatment centre is so shoddy?
-What should we have for dinner tonight?
-Why is the breast cancer world so polarized and politicized?
-How am I ever going to find a swimsuit now?
-Do people know how little of their breast cancer fundraising dollars go into services for actual patients?
-I feel guilty for not needing chemo.
-When can I go for a walk today?
-Why has this been such a shitty year?  Everybody told me when I had to leave my job that when one door closed, another door opened.  But that door wasn’t supposed to be CANCER!  It was supposed to be something BETTER NOT WORSE!  (I think this a lot).
-When is that booking clerk going to call me for my next appointment?
-How many days until I see my adult kids again?
-Why aren’t mental health services offered to newly diagnosed patients?
-Why are the Republicans so cruel?
-Why can’t I motivate myself to work on my book?
-Is the new episode of VEEP on?
-Why have so many of my so-called friends and family dumped me?
-How many steps have I taken today?
-I am over-sharing on my blog?
-Why are people with disabilities so devalued by society?
-Are the Oilers going to drop out of the playoffs so I can get my husband back again?
-How do I accept my new ‘sick person’ identity without getting stuck in being a cancer patient forever?
-When is Aaron going to finally get that sleep study?
-I need to calm the f*ck down.
-Should I delete my Facebook account?
-What’s with the war metaphors and cancer?
-Is radiation going to burn my skin?
-Where is the nest of the bald eagles that fly past our window?
-Is it too early in the day to have a drink?
-Is this Tamoxifen making me sad?  Or is this sadness just situational?
-Are the Liberals going to win our provincial election? (God, I hope not).

I mean, this doesn’t even form an inkling of a well-constructed essay.  This are clearly signs of a ruminating monkey brain.

I am in the in-between days as I wait for radiation. (Teva Harrison eloquently termed the phrase ‘the in-between days’ in her book of the same name).  I am so far from having my shit together, I wonder if my old life was just a carefully curated illusion.  I fear this cancer has triggered a mid-life identity crisis.

On Wednesday, I finally saw a therapist at the cancer agency.  She gently suggested that maybe it is okay to allow myself to be stuck in the mud.  This kind permission helped, a lot.

So while I am stuck with no epiphanies in hand, I am eagerly gobbling up lessons from others further down the path.  Melissa McAllister wrote this fine piece for The Underbelly called Where Are All the Silver Linings four years after her own breast cancer diagnosis.  I lean on her wisdom:

You don’t get to step away from cancer and climb back into your old self. That person is gone in a lot of ways….the only way out is FORWARD. Remember that.

No wonder I feel as if I’ve been disappearing, invisibly inching along the side of the road while the world zooms past me.

Melissa also talks about the steps she has taken to make her feel good and right again.  I’ve only figured out these three things so far (I document these things often on my Instagram account):

1. Go for a walk to look for some beauty
2. Practice being still
3. Try to be kind to myself

Perhaps I have to be okay with not being okay.  Maybe that’s enough for now.  As the dearly-missed Lisa Bonchek Adams said:

Make the most of this day. Whatever that means to you, whatever you can do, no matter how small it seems.

I will endeavour to listen to all these beautiful women who have recently floated into my life.  For if we can’t learn from those who have stared at their own mortality, who can we learn from?

And now I will press publish on this messy, imperfect post. It isn’t that well-constructed and it doesn’t even have a proper ending – but then again, neither do I. xo.

shaking off the cobwebs

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GirlTrek – from the TED Conference Flickr Album  https://www.flickr.com/photos/tedconference/34147188051/in/album-72157683062343735

While I don’t have $8,500 to spend on a TED 2017 ticket, I did have $23 to see TED Cinema on Sunday.  This was a two hour summary of the highlights this previous week’s TED event, which was held in downtown Vancouver.   My head feels as if the vice wrapped around it has loosened a tiny bit, and I don’t think CANCERCANCERCANCER every minute of every day (just every second minute of every day).  Listening to big ideas about the future was a pleasant way to spend an afternoon.  Now that I’m assuming I will have a future, so I’m feeling much more hopeful than before, despite the state of our world (especially America).

Good stories either validate our own experiences or surprise us and teach us something new.  The highlights of TED 2017 offered up both.  I scribbled quotes in the dark in my little notebook.  Here’s what I want to remember:

  1.  The highlights were curated carefully.  They opened slowly, with a talk about Artificial Intelligence (AI), a subject that gives me the creeps.  I slumped in my chair, calculating it was going to be a long two hours.  Thankfully the speakers picked up the pace afterwards.
  2. The best presenters were the ones with the most PASSION and ENERGY, even if I didn’t know what they were talking about.  A young musician called Jack Conte won me over with his enthusiasm for his topic of content creation on digital media.  His premise was that artists should get paid (to which I say hell ya).  His topic was entirely about money, but it was the way he delivered it with his whole heart that made me sit up and listen.
  3. My favourite talk was by Vanessa Garrison and T. Morgan Dixon, who co-presented about GirlTrek – an innovative program that encourages African-American women to walk in their own neighbourhoods.  This simple concept spoke to me – walking is healthy, walking is social, walking helps us take back our communities.  Self-care is a revolutionary act, they said.  Grab a sister, rally your allies and find joy.   These two women were dynamo speakers – often on the brink of tears – their love for their work shone through.  I’m a believer.
  4. As a molecular biologist, Elizabeth Blackburn could not be more different than me.  But she caught my attention for her Nobel-winning work about how stress affects how long we live and her particular emphasis on women who are caregivers of children with disabilities.  Yes, no surprise, us moms hold a lot of stress that leads to dire health effects.  This was sad but validating.  She did offer up some solutions, as our approach to our lives can help temper this stress.  As Elizabeth said – stress reduces when we look at our lives as challenging instead of full of threats.  Also, meditation helps.  I concur.
  5. I continue to be intrigued by the simple but profound idea of annual guaranteed income.  I’ve paraphrased my favourite quote from Dutch historian Rutger Bregman’s talk:  “simply get rid of paternalistic bureaucrats.  They can hand over their salaries to people living in poverty.”  BOOM.  Note:  paternalistic bureaucrats are the reason for most of my own stress (see #4 above).
  6. I’m ashamed to say that I didn’t know Shah Rukh Khan, who is one of the most famous men on earth.  I know him now. He’s a self-professed ‘aging movie star’ – an actor in India.  He was eloquent and in possession of a cheeky humour.  His message was one that I preach, too – find a way to keep on shining to create a world based on dignity and compassion.
  7. David Millebrand’s talk about refugees was both timely and seeped in history.  He was one of many speakers who called for a stop to building walls in our world – both literally and figuratively.  He made a passionate plea for us to open our hearts and our countries to those fleeing terror.  Dude was a great storyteller too.
  8. I quote and reference Anne Lamott all the time.  She closed the TED Cinema highlights with 12 Things I Know for Sure, a bright contrast to the opening speaker.  It made me happy that Anne read from her cards and wasn’t polished and scripted.  It made her real.  I have read all her books and I know all her quotes.  She was funny and dare I say states(wo)man-like, imparting wisdom to the rapt audience.  She was the right brain bookend of a left brain event.  Anne spoke about writing, practicing radical self-care and shared that serenity of mind is a inside job.  She has always been my wise aunty – blunt yet amusing and always spot on.

I was disappointed that Atul Gawande didn’t make the highlights, as I so admired Being Mortal.  My husband perked up at Elon Musk’s interview – while I don’t like Mr. Musk’s political allies, I do admit that he makes me think:  what’s my big idea?  It might not be space travel or tunnels under L.A., but if I had one bold idea, what would it be?

It was good to escape for two hours in a darkened theatre to exercise my creaky mind.  I didn’t even think about my stupid cancer even once until I saw the light of day.  A respite, even brief, is always a good thing.

how the little stuff is the big stuff

Screen Shot 2017-04-18 at 8.43.33 PMI’ve been to three cancer physicians the past three months since being diagnosed with breast cancer.  (Let’s all agree not to call my experience a journey or battle okay?).

There aren’t any navigator programs for cancer patients here, so my dealings have been directly with physicians.  I wish I had access to a nurse or nurse practitioner, but that is not how things are set up in British Columbia.

My first physician was a surgeon who was all business.  Yes, I know surgeons aren’t famous for their bedside manner and as far as I can tell, she did a fabulous job cutting out the cancer out of my body.  People say surgeons can’t get emotionally involved with their patients and still be able to cut them open, so I tried my best to understand this.  She reviewed my results with me too quickly for my muddled head, but thankfully I saw my family physician a few days later and she translated the pathology and my surgeon’s scribbles into a language I could understand.

My second cancer physician was the medical oncologist (shortened to the funny-sounding MedOnc in the cancer world).  I mostly saw her resident, not her. This oncologist kept calling me Ms. Robins which was disconcerting and made me feel like she was talking to my mother.  She was brisk to the point of being dismissive.  I don’t need chemo so she didn’t have a lot of time for me and waved my silly questions away.  It is true that she had other patients to see who had more serious kinds of cancer, so I tried my best to be understanding of her approach.  I took my puny little cancer and slunk away as fast as I could.

I have been a mess after each of these appointments, hand-wringing and second-guessing everything the doctors told me and ruminating on every word they said for days afterwards.  Ask my sweet husband – this has not been fun.  Frankly, I have been acting like a wounded animal.  I realize I was struggling to trust what surgeon and medical oncologist told me because I did not sense they cared about me.  Well, maybe they did care about me, but they didn’t demonstrate they cared about me. Also, I’m not a good mind-reader, so any caring they might have in their hearts went entirely undetected by broken (and admittedly-sensitive) me.

Yesterday I dragged my demoralized self to the hospital to meet yet another physician – this time a radiation oncologist.  The nurse ushered anxious me into the clinic room.  The first thing she did was she asked me if I wanted a warm blanket.  A warm blanket!  I love warm blankets.  This appointment was off to an unusual start.  My shoulders instantly relaxed and I breathed a bit easier, cosy under my coveted blanket.

Next, my new doctor knocked on the door and introduced herself to both me and my husband.  She was genuine and lovely.  She reviewed my pathology results in regular person language, leaning on gardening metaphors and pausing to ask what questions I had.  She asked me what kind of writing I did.  She patted me on the leg a few times, which gave me great comfort.  (There’s not enough healing touch in health care.  To me, that simple touch gave me a little peek into her caring heart).

She asked me if I wanted to ask my list of questions first, or if I wanted her to explain things and then I could ask any remaining questions afterwards. (I chose the latter).  A few times I started to say something and stopped, worried about interrupting her – and she immediately paused and gently said:  yes, yes, what did you want to say?  She did not appear rushed in any way, even though she had a roomful of patients in the waiting room.  She even shared her email address so I could ask any follow up questions when I got home.

By the end of the appointment, the wounded animal in me had disappeared.  The kindness settled me down.  I felt connected to my new doctor and that connection was blossoming into the beginning of trust.  This is more than merely being nice – it is about laying the foundation for a relationship.

All the little actions helped to heal my fragile heart – from the warm blanket, the introductions, her gentle approach, her hand on my leg and the way she held space for my questions. All this so-called soft stuff is so much more than just kindness.  With her words, gestures and actions, this physician was demonstrating respect and caring too.  It was not only what she did, but how she did it.

I might still have cancer, but I am finally at peace for the first time in a long time.  This is because I feel taken care of. These little things may seem like nothing to you, but in my current state of heightened vulnerability, they mean just about the world to me.

when everything isn’t awesome

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a card from a friend from the brilliant Emily McDowell*

I fret about sharing don’t lists because I fear I will scare people away.  But people have already been scared away by me. I’ve watched them running away as fast as they can, their images fading in the distance.  (Note: breast cancer is not contagious).  This happened after Aaron was diagnosed and it made me sad then and it makes me sad now, too.  I’m not going to point out the stupid things people have said to me.  I know people are uncomfortable with illness and death, but generally it is best not to: ignore, shame, make it about you, compare, minimize, judge, give vague suggestions of support or imply why I got cancer and what I can do to cure myself.

Here are some essays that explain this far better than I can:

What to say to someone with cancer – from Lisa Bonchek Adams, who continues to make a difference in the world
She wrote this too: The stupid things people say to those with cancer and their families
Don’t tell cancer patients what they could be doing to cure themselves – from the Guardian
I have cancer.  This is how much pressure I felt to be a hero – Adam Bessie’s brilliant visual essay.

To temper all that, here is a classic Heather Plett essay about Holding Space that I often share with health professionals in my work in children’s hospitals.  It holds true for what I need as a person with cancer, too.  It is challenging to walk beside someone in their pain.

Many people in my life are either health professionals or moms who have children with disabilities.  They have also experienced a lot in their own lives, and I think that helps with their heightened level of compassion. I am grateful for their natural ease with me.

Here are some things that have helped me a lot:  random messages to see how I’m doing, thoughtful blog comments, handwritten cards, handmade journals & meditation cards, little gifts of things I love, like sweets & socks & books & flowers, checking in with my husband and my grown-up children, real offers to take Aaron out to have fun or to pick him up from school, rides to appointments, food for my family and stolen coffee & sushi dates.  I especially appreciate folks who have continue to check in with me, long past the initial flurry of activity that happens right after diagnosis.

One friend in Edmonton got up at 5 am to drive my daughter to the airport when Ella came to care for me after I had surgery.  I cannot tell you how much that meant to me. Another friend made me a beautiful quilt of images in Paris, which I adore – just thinking that she took the time to create that for me brings grateful tears to my eyes.  I have another quilt sent by a kind soul who I know only through Twitter.  Finding a little handwritten card in my mailbox can brighten my whole day.

I have felt both loved and unloved the past three months, but I’m choosing to remember the love, which has poured in from all over Canada.  This barrage of love is what keeps me going.  Thank you my friends – I trust you will see yourself reflected in my words.

*I think Emily McDowell  knows what I’m talking about.

the way the lady luck dances

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The past few months, attending doctor’s appointments are akin to showing up to my worst speaking engagement ever. I haven’t adequately prepared, I’ve left my speaking notes at home, the projector for the slides won’t work and the tech guy is nowhere to be found. In this case, I’m also standing in front of a hostile audience like a fool in a thin blue hospital gown that opens in the back.

This is the feeling of vulnerability. My surgery was six weeks ago and yesterday was the day to finally find out my treatment plan – an unknown cocktail of chemotherapy, radiation and hormone therapy.

My husband drove me to my oncologist appointment. I barked at him about something stupid and then apologized, aware I’d been miserable to live with lately. One of my realizations I’ve had through this whole mess is how deeply this man loves me. For this I feel terribly lucky.  I closed my eyes when we hit gridlock on Broadway and practiced the breathing I learned at meditation class.

It was a 2.5 hour appointment, but 1.5 hours of that was waiting around sitting on hard chairs. Everybody was pleasant enough so I don’t feel like dissecting this particular patient experience.

It turns out that I have a weak pathetic kind of breast cancer which replicates at a snail’s pace. It could have been brewing in me forever before it escaped my milk ducts and showed up on as a ridge above my heart.

For treatment, I got the best possible news: because my cancer is slow and the grade is so low, chemotherapy will barely affect my recurrence rate. If I have chemo, it lowers my recurrence risk by a puny 1%. For me, it is clear I’m not going to put my family and me through the hell that is chemotherapy for 1%. So it is radiation and five years of estrogen blocking medication for me.

I’ve been lurching around in shock for months, sometimes so deep in denial that it felt like a documentary film crew was following me around recording my fictional life. I took in this news in the same way, numbly, while my husband kicked into giddy celebration.

I have dodged a bullet. There’s no reason for this – many good people who are surrounded by love and prayers and engage in positive thinking and clean living do not dodge chemo at all. I feel guilty for having such a stupid little cancer while other women suffer so deeply.

I was unlucky to get breast cancer. But I was lucky to end up with this particular cancer.  This makes me the luckiest unlucky person you know.

It is what it is

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I breastfed my three kids for six years (not each, sillies…but all together) and naively thought that made me immune to breast cancer. This is an arrogant way to think: to be so pious to assume others with cancer brought it on themselves and you are somehow above that because you ran marathons or breastfed your babies or didn’t eat sugar.

Cancer doesn’t work that way. That’s the problem with risk factors – they are only factors, not absolutes. And even if this is all my fault, does that mean I deserve any less treatment or compassion? Think about that for a moment. If you believe that, I might be able to sell you a membership to the Republican party.

So when I felt a lump last October, I didn’t become alarmed until the lump resulted in a mammogram and then an ultrasound and then a long biopsy at the end of January. And then, sure enough, a diagnosis of breast cancer followed a week later.

(Note for my friends going through the same process: 80% of biopsies come back benign. If 1 in 9 Canadian women get breast cancer, consider me your ‘1’ out of 9 women you know, including yourself. I’m taking that ‘1’ for the team).

Believe me, I’ve heaped enough blame on myself: I’m soft as opposed to firm and I do enjoy a regular glass of wine. Both are risk factors that I calculated in my darkest hours probably wiped out any advantage from all that childbearing and subsequent breastfeeding.

Then I moved to blaming the environment – hormones in my food (but wait, this meant I didn’t make healthy food choices – damn) or growing up in oil-loving Alberta, with refinery dust settling on me as I biked to elementary school. Since my dad has had two different types of cancer and he worked at the oil refineries, my muddled brain attached itself to this explanation.

(Don’t fear, Alberta friends, this is made up in my head – see this Cancer Report from the Government of Canada for actual facts).

Of course, this is all speculation, also known as the blame part of grief. I went through the same process when my son was born with Down syndrome (My eggs are old and wrinkly! It was the refineries!) to no avail.

As far as a philosophy, my dad, in remission from both leukemia and prostate cancer, says simply, It is what it is. This seems useful.

A friend, who has had a lot of shit happen in her life, says equally profoundly, Shit happens.

Even Science magazine chimes in, saying, “66 per cent of mutations that contribute to cancer are due to unavoidable DNA-replication mistakes.”

Now I have a son with three copies of his 21st chromosome and I’d never consider him a mistake. I have always felt he has a chromosomal difference, not a disorder, and that he is a part of the natural human fabric just like everybody else. Me with my cell-mutation – well, true, it will kill me if I don’t treat it, so that’s a problem. But these things happen.

But in order to inch towards acceptance, I’m going to conclude that shit happens and it is what it is so that I can shut off my monkey brain and sleep at night. In this pre-treatment time, I am attempting to be as kind to myself as possible in order to find a little peace in my heart. I have a sense that I’m going to need to draw upon this peace for some dark days ahead.

Tommy the Cancer Cat

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the cat in question

Towards the end of her life, my beloved grandma lived in an assisted living facility in small town Alberta. She spent a lot of time in her room, reading and (then when her sight failed her) watching television. My aunt lived in the same town and was her fierce advocate. She came up with a brilliant idea to stave off the loneliness that befalls so many elderly people: my aunt negotiated with the nursing home to get my grandma a kitten.

Now, my grandma lived in the country for many years and was practical about the value of a cat. She felt cats belonged outside chasing mice. But things changed after my grandpa died and she moved into the home. She became less mobile and spent many hours alone in her recliner chair. A little orange cat changed all that.

My aunt plucked a kitten from a litter on a farm and brought him to live with my grandma. Suddenly my grandma was never alone again. She named the orange tabby Tommy, after her brother who had died a few years back.

Since he was wee, Tommy the cat’s only job was to sit in my grandma’s lap. He was very good at sitting in laps, exceptional even. Occasionally he’d go for an adventure hiding in a kitchen cupboard, or inviting the nurses to scratch him on the belly, but mostly he just sat in her lap, purring away. My grandma grew older and frailer and acquired bladder cancer in her final years. Tommy remained on her lap through it all, taking his job as therapy cat very seriously, lap-sitting his way through the days.

My grandma denied that Tommy slept with her in bed, but I like to think that he was cuddled up next to her three years ago, purring away on the night she died.

We are cat people and when my grandma got very ill, I told my aunt we would adopt Tommy when she was gone. And so that we did.

Tommy arrived at our noisy house a bit freaked out, but he adjusted quickly. From the beginning, Tommy always seemed fond of me. I think he thought I was my grandma reincarnated. He was keen to jump up on the couch and sit with me on the rare occasion I would actually sit down on the couch. He was a pleasant cat, not prone to causing troubles, until late last August.

It was then that Tommy became overly obsessed with me. He started meowing and yowling when I wasn’t in the room in a way he never did before. He’d wait all day, watching me closely and following me around until I finally sat down on the couch. Then he’d jump up and snuggle fiercely up onto my left side. He’d stretch his paw out and knead me like I was his mother and he was a little kitten again.

Right around that time, he began peeing on bathmats, laundry left on the floor, and most disturbing of all – beds. We spent hundreds of dollars at the veterinarian’s trying to figure out the reason why. Male cats are prone to kidney problems, so we bought expensive urinary tract food. We ran diagnostic tests. We put him on anti-anxiety medication but it didn’t help much and caused his liver levels to go wonky. Finally we had to conclude that there was nothing physically wrong with Tommy. He’d just gone off his rocker for no apparent reason.

Our vet bills kept creeping up and we had to bar him from all rooms with beds and be fastidious about picking up bathmats and laundry. We had to take a good hard look at him. I decided I couldn’t bear to ‘rehome’ him, because when I saw him, I could only see my grandma. Irrationally or not, I knew she was watching and I didn’t want to betray her. I had promised to look after him, but his new strong obsession with me was really weird. He started meowing for me outside the bedroom door every morning when the sun came up (note: he can’t sleep with us because he will PEE ON THE BED), which was particularly annoying.

Clearly Tommy was coming apart at the seams. Then about six weeks after his newfound addiction to me began, I found a lump in my left breast.

I know I’m searching for meaning as I heal from surgery and wait for my first oncology appointment. But I believe Tommy sensed my tumour back in August, before I even detected something was wrong. He always sits on my left side and reaches up with his paw to my left breast (I thought he was merely being a pervert). But this is as he sat on my grandma’s lap all those years, as she had cancer as I do now. If a German Shepard can sniff out cancer, maybe Tommy the cat can too.

I know I’ll be sitting on the couch, an orange cat by my side, more and more as this year unfolds.  I’ll be recovering from whatever cancer treatments are looming in my near future. If nothing else, Tommy knows his job in life is to sit with people who are lonely and in pain. This seems like a pretty good calling to me.