Susan gets radiated

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From the Happster’s Instagram feed

At 8:15 am, I walked into the sad building that is the Cancer Agency. So dated and scuffed, the elevator always packed, the piano in the lobby sitting empty. I go upstairs and dutifully wait in line to register. Last time I didn’t stand on the left, as the tattered sign instructed me to and I was scolded. This time I knew better. ‘Follow the green line to Treatment Area 7’ I’m told. So that’s what I do.

Treatment Area 7 is at the very end of the building. I walk past the other treatment areas and peek into the waiting areas. They are filled with people in various stages of pain.

I’m feeling especially sad for myself because I’m alone.

I get to Treatment Area 7 and sit down. I notice other women there already changed into gowns. It is only women. I don’t know if Treatment Area 7 is just for breast cancer or what. Nobody tells me anything.

I’m not sure if the staff know I’m there. I don’t have a gown. I try to ask a woman across from me – ‘excuse me’ I say but she is immersed in her phone and doesn’t answer. She wears a scarf to cover her bare head and I feel guilty that I don’t need chemo. I don’t bother her again.

I’m now thinking there’s no way they know I’m here because I don’t have a gown. So I get up and present myself to Treatment Area 7’s desk. A young man looks up, annoyed. Just go sit down he says. Okay, I say, compliant and small. The TV is blaring a shrill morning news show in the holding area. There’s no peace here. I sit and close my eyes.

The same young man calls my name, ‘Susan’ he says. Call me Sue! I say cheerfully. Nobody calls me Susan anymore.

He’s still annoyed with me. I must be like 25 years older than him. I am an old woman to him – worse, an old woman with cancer. He has the information he needs to share with me on a wipeable plastic piece of paper. I know after he’s done with me, he will just wipe all my information off and replace it with someone else’s.

First he wants to set me straight for coming up to the desk. ‘Don’t come up to the desk,’ he says. ‘That interrupts us and we are busy working.’ I nod like I’m supposed to. ‘Next time put this pink card in that box so we know you are there.’ I protest meekly: ‘I didn’t know. It is my first time.’ He stares at me blankly, like it has never been someone’s first time before. ‘The receptionist just told me to come here,’ I say finally, quietly.

This seems like a dumb thread of conversation, so I give up, defeated. I hope he’s not my radiation therapist because I don’t want him to see my scarred and beleaguered boob.

He hands me the pink card with my appointment times for next week on it. I cannot get over how archaic and paper based this whole thing is. It is like 1961. What if I lose this coveted card? I’m sure that means I’m in trouble. I can’t help but peek at the times.

Three of out five of them are either early in the morning or late in the day. When they called me last week and asked my preference for time, I said 10 to 1 pm. There are only two mid-day times. Immediately I start panicking, thinking about how I’m going to get childcare to get Aaron back and forth to school. Crap.

Um, I say, hesitant to interrupt his reading of the information from the plastic sheet. ‘I can’t come at these times,’ I say. I bring on yet more annoyance. ‘I can talk to the clerk but I can’t guarantee it,’ he says.

I reluctantly pull the disability card. ‘My son has a disability. Not just anybody can pick him up from school.’ This is a bit exaggerated but mostly true. I don’t know if this helps or just makes me look more pathetic. Patient has cancer AND a kid with a disability. Sad. ‘We’ll see,’ he shrugs.

I follow him around as he shows me where to get changed. There’s some complicated formula for the gown thing – I’m to wear the same one every time so they don’t have to wash it as much. I leave it in a numbered bag and hang it back up afterwards. I have to remember my number.

Okay, I keep saying, nodding. At the end, he says, reading off an invisible script, ‘if you have any questions, just come and ask us.’ I am puzzled by this comment. I thought I wasn’t supposed to come up and speak to them. Maybe it depends what kind of question I have.

I get changed and look at myself in the mirror. I look terrible. My hair is frizzy. My hair colour is all fading and I look unhinged. My mascara is smudged under my eyes. Why did I bother wearing make up? I haven’t slept much. In fact, I haven’t slept much since I found that ominous lump last November, which was six long months ago.

I sit back down. They call my name again, ‘Susan’. This time I don’t bother to correct them. Susan it is. Maybe it can be Susan who has cancer. Sue does not have cancer. I’ll go back to Sue later.

The radiation therapists are both women, but they are considerably less warm than the staff who did my CT scan last week. No chit chat, nothing. Climb up here, they say. I was going to joke ‘this is just like the spa!’ but I opt to say nothing. They do not seem like the joking types. They do introduce themselves, but everything they do feels like they are ticking off a box on the list.

I have to hold my breath when I am radiated. I cannot believe how stupid this sounds and how long it took the researchers to figure out if you have cancer on the left side, holding your breath during radiation helps prevent heart disease. At least I hope it does anyhow.

‘At your CT scan, you let some air out while holding your breath.’ the radiation therapist says. Immediately I feel shame. ‘They told me I did a good job!’ I say, lightly. ‘You let some air out,’ she repeated. Then she produces what looks like a clip to hang clothes. ‘If you do it again, you have to wear this,’ she says. I don’t want to wear a clip on my nose. I have a recurring nightmare of suffocating underwater because I can’t breathe. ‘I’ll do better,’ I promise.

The lights are blaring above. I wonder why they can’t turn them down. I read once there is sometimes music. There is no music here, just the whirring of the machine. I close my eyes. They are yanking the sheet under me to put me in the right position. I pretend I’m sitting on the beach in Kaua’i. I imagine watching the waves flow in and out. I keep breathing. I think, someone should teach patients relaxation techniques before they start treatment. I have to work more on relaxing. Right now, I’m the least relaxed person on Earth.

They exit the room and I’m alone with the machine. I already hate the machine. This is the coldest and least human kind of health care. I crack open a tiny bit and start crying. My hands are above my head, in some sort of weird S&M position and I can’t wipe away my tears. I can’t cry and hold my breath at the same time, so I’m a bit panicked. I have to calm the fuck down.

They talk to me through an intercom. Apparently there’s a video camera on me so they probably saw me crying but they don’t care. I wonder if other women cry. The faceless voice instructs me over the speakers. I have to take deep breaths in and hold them for a long time. I am obedient, scared of getting the nose clip and try to comply. My poor left breast is exposed, both to the air and to the burning radiation rays. Slash, poison, burn. That’s cancer treatment in a nutshell.

I feel nothing now, but later my skin will be burned. It is cumulative so I’ll look forward to being scorched after a few more sessions.

It is done. I don’t know how long it took. Maybe 10 minutes? I get off the table and stand awkwardly in the room. ‘You can go,’ they say, pointing to the exit. Thank you, I say. I thank everybody for doing their job. I know this game. If I’m not overly grateful, I’ll be labeled as difficult, which won’t help if I need a favour one day.

I need to ask about my appointment times, but there’s that guy sitting at the desk again. I march back up there, taking my chances. I need my pink card back.

He’s busy using liquid paper of some sort to change the times on my card. Now only one is not mid-day instead of three. Thank you so much, I say, again. I see the door across the hall says, ‘radiation booking clerk’ so I know this hasn’t been much effort for him.

I get changed and get the hell out of there, following the green line all the way back to the elevator. I can’t figure out where the stairs are, so I stand silently in the full elevator for only one stop, looking at the floor.

I sit alone in the cafeteria with a tea, waiting for my Mike to arrive.  He is rushing to get here after dropping Aaron off at school. One burn down, 19 more to go.

(Note:  I wrote this ten days ago after my first day of radiation.  I’ve tried to shake this experience off and let it go.  Since then, I’ve had five more treatments.  The experience has improved because:  1.  I know what to expect and 2. Sometimes I am assigned friendly radiation therapists.  I stick to my contention that one little smile in health care always helps).  

learning to breathe again

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The Butterflies and Pebbles Instagram feed is the best.

Yesterday when I was at a local bakery, happily meeting a new friend and drinking tea, my phone rang. It was The BC Cancer people. I felt like yelling in the phone: STOP CALLING ME YOU CREEPS but then I remembered that I have cancer.

Over three months post diagnosis, I finally start radiation treatment on Friday at 8:15 am. They give you two days’ notice and it is at the worst possible time, as I have a kid to get to school for 8:50 am, but there was no negotiating with the person on the phone.  My whole life lately has been entirely at the mercy of booking clerks.

They (whoever ‘they’ are – I’m not even sure) dole out information into little tiny packages, only telling you the details of the very next step, which pushes you into even a more heightened state of anxiety because you don’t know what’s coming around the corner.  It turns people into wounded animals.

This makes it impossible to plan or even think about the future. Besides there is a version of the near future where I might be dead, so maybe it is best not to think about that anyhow. I suddenly understand the notion of living in the moment that everybody wiser than me keeps going on about.

At the therapist last week, I was jumping around topics like I was playing whack-a-mole and she finally said to me – after I spent 50 minutes splaying out my thoughts like machine gun bullets – why don’t you put both your feet on the ground and close your eyes? I did that and immediately I calmed down. We mutually decided that my one take-away task was to work on relaxation.

On Monday I nervously drove myself to a relaxation class at the cancer centre. Now being nervous going to a relaxation class is kind of stupid. But I there I was.

There were about seven people in the room, all women, who I presumed to be in treatment or post-treatment. It opened with a roundtable segment – the anticipation of which increased my wide-eyed nervousness. To my great relief, nobody introduced themselves by their diagnosis – instead we had to share an image that was calming to us. I didn’t have an image, but I did have an auditory memory: the sound of the croaking frogs outside our bedroom window that puts me to sleep when I go to bed, and then lulls me back to sleep when I wake up my typical five or six times during the night. (Thanks for the insomnia, Tamoxifen). The croaking frogs turn into singing birds when the sky lightens and even thinking about those sounds gives me a small zing of calm pleasure.

I was the only ‘new’ person in the room and many of the ladies seemed to know each other. I also felt young, which doesn’t happen very often anymore. I’d describe many of the women there as sad. I am sad too.

The facilitator was a social worker and had a lovely way about her. I didn’t have my little notebook out, so I can’t remember much she said, except this: we can trick our bodies into feeling calm by breathing. If we take nice deep breaths, our bodies feel we are calm, even if we are not. This makes sense to me. Don’t forget to breathe, silly.

Later, we laid down on mats and were covered by blankets by volunteers and the facilitator walked about, giving a guided meditation made up of all the images we had shared with her. Then, oh my god, the volunteers came around and touched our heads and feet in a most therapeutic way and man did that feel good. This might sound weird but it really was the best thing. I realize how little we touch each other in this world, especially in health care environments. Most touch in the hospital involves inflicting  pain and this gentle touch is the perfect antidote to that. I think more healing touch could help make hospitals more human again.  (I have so many ideas to make this whole cancer experience better for patients, but nobody has bothered to ask me my opinion).

Afterwards, everybody packed up the mattresses and pillows like after a yoga class and we met back in the circle. At this point, nobody had spoken to each other directly. One woman leaned over and said to me: I like your nail polish. I smiled at her generous olive branch, tears threatening to spill behind my eyes.

I was happily and calmly heading back home when three of the older ladies said to me, ‘we meet up for coffee afterwards. Do you want to join us?’ Sure, I’ll just go to the washroom first, I said, overly enthusiastically. I went into the washroom, locked myself in the stall, and cried like I was a little girl again.

These women all knew what it felt like to be the new person. They hadn’t forgotten what it felt like to feel scared all the time. I felt on-my-knees grateful for this kindness.

Later, in the cafeteria, I found out little pieces of their own stories and I shared a bit of mine. When I confessed I only had stage one breast cancer, one woman admonished me: you don’t ever only have cancer, she said. You have cancer and that’s always a serious thing. Then they said, ‘watch out or we will mother you!’ I blinked back tears and nodded, biting my lip, starting to break open again. Being cared for is the one exact thing that I so desperately need.

Tomorrow morning, I will be at the cancer centre, wearing a thin hospital gown. When I’m laying at the mercy of the radiation machine, as they line up the punishing rays with the tattoos on my poor beleaguered left breast, I will close my eyes, remember to breathe, surrender and draw upon the spirits of the kind women who have gone before me.

Cue the frogs, my friends.  Namaste.

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


GirlTrek – from the TED Conference Flickr Album

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

lady luck
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.