a portrait of the patient experience

I strongly believe that patients should tell their own damn stories, in whatever way makes sense to them.  Do you want to support someone who is suffering as a loved one or health professional?  Listen to their story, no matter how difficult it may be for you.

While I’m a word person, I’m fascinated by those who use other forms of art to share stories.  The Portrait of the Patient Experience is a TEDMED talk about the intersection between health and art.  Ted Meyer is a visual artist from Los Angeles who has created visual art, first from his own scars and then from the scars of others.  He facilitates discussion between artists with chronic diseases as the Artist in Residence at the University of Southern California’s Keck School of Medicine.  He does what I call The Important Work.

Here’s a favourite quote from his talk:  People always say – art should be about something until art is about something and then they don’t really want to look at it.

On a personal note, I shared the podium with Ted two years ago at Collaborating Across Borders, an interprofessional conference for health academics.   While I spoke about this, Ted impressed with his humour and creativity.  I knew he’d go far and that he did.

He says about patients:  Pre and post scar narratives are held together by their scars to give their life a new meaning.

I strongly believe that we can inspire, motivate and educate by sharing our stories in whatever form that makes sense to us.  Importantly, telling our stories also helps us to heal.

Arthur Frank references Judith Zaruches in his formative book The Wounded Storyteller,  Stories have to repair the damage has done to the ill person’s sense of where she is in life, and where she may be going. Stories are a way of redrawing maps and finding new destinations.

There are many ways to tell your story: a private journal, the whispered word, poetry, visual art, music, dance – or any other artistic form.  Creativity is an expression of you.

For those supporting wounded storytellers, it might be difficult to look at these scars.  These scars remind us that we all have the capacity to be broken and vulnerable in some way.  It is a great gift to those of us who are suffering not to look away.

sontag

There are so many secrets in the land of being a sick person – secrets associated with being that sick person and secrets in the health care world we are immersed in.  Now I’m no Oprah and I know nothing for sure.  But I do have a strong sense that the telling of these secrets will help set us free.

 

the weather

This video is a poem by spoken word artist Shayne Koyczan, produced for the Canadian Cancer Society.  If you or anyone you love has been touched by cancer, dig out a big box of Kleenex right now.

Today I have my regular quarterly appointment with my medical oncologist at the cancer agency.  In a windowless treatment room, she will examine me for signs that my cancer has metastasized.  I’m told they no longer use scans to find evidence of spreading disease.  Instead a human doctor will scan me herself, asking me pointed questions about headaches and back pain while I watch her carefully with my unblinking eyes.

Shayne says poignantly:  “We must steady ourself on the shoulders that science provides…a doctor becoming a weatherman, trying to forecast your end, trying to bend time into an answer and give it their best guess.”  

This is how art evokes emotion – to express the things we dare not – to help us to slowly heal.

Ps:  If you are interested in art and healthcare, check out Vancouver Island artist Carole Reid’s Instagram account, where she is documenting her experiences having breast cancer through her art, the HUSH Foundation, an Australian organization dedicated to creating calming music for stressful hospital environments and visual artist Ted Meyers’ Scarred for Life project.

The Affronts to My Human Body

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As I get older, I have become an accumulation of scars. A hernia repair when I was 8 years old left two faint, raised scars. Two attempts to remove an ovary resulted in a keloid in my belly button and other healed wounds from laparoscopic oophorectomies. (The term oophorectomy still makes me giggle). My partial mastectomy early this year left a one-inch scar that just peeks out of my bikini top. I have another scar and a lingering hematoma under my arm from lymph node removal.

I understand the medical need for these scars. They are evidence of removing things that were causing me trouble. But there have been other, unnecessary, affronts to my body.

In the process to be diagnosed with my bleeding disorder (von Willebrands, a common malady that is not hemophilia, but it is severe enough I wear a Medi-Alert bracelet because of it), a lab tech cut me three times with a razor-blade. She cut me. I couldn’t freakin’ believe it when it happened. I said: YOU ARE CUTTING ME WITH THAT? She said yes and then she cut me. They wanted to see how long it took me to clot without medication, with a bit of medication and with a lot of medication. (They administered the medication by stabbing me with a needle in my stomach, which was not pleasant, but at least it was temporary).

The three scars left from this bizarre diagnostic procedure are not temporary. They are on the underside of my forearms and they are permanent. It looks as if I might have had a cutting problem (I didn’t).   I am not pleased that nobody has thought of another way to test for von Willebrand’s without cutting people with razor blades on visible places on their body.  I think we can do better than that.

Along with scars, breast cancer gifted me with a blue nipple (that is thankfully fading) and two permanent radiation tattoos. When I was in for the appointment to prep for radiation, the Radiation Therapist took out this box thing with a needle and ink. And then she proceeded to poke me with it in two places – right in my cleavage and on the side of my ribcage. This was bizarre and these tattoos look like blackheads. I asked if she could at least make them into flowers but she didn’t think that was funny.  They put stickers on me, too, and drew on me each radiation treatment with a pen. That didn’t bother me so much, but it does disturb others. One woman on Twitter recently said the markings made her feel like a piece of meat. I can totally see that.

I asked a friend who is a Radiation Therapist – why the need for permanent marks for radiation that is over in four weeks? She told me that we get tattoos because other ‎marks or tape wash off and there isn’t a semi-permanent alternative.

This all seems weird to me and falls into the category of: what is a big deal for me isn’t a big deal for health care professionals.  What I don’t like is the permanent nature of something that the hospital only needs for a few weeks.  This seems to tread on my dignity.  It strikes me that there are many ‘side effects’ from procedures in the hospital that are shitty for patients, but convenient for clinicians so nobody does anything to change it.

My friend did add: there is quite a bit of research looking at alternatives like henna, UV lighting and “invisible” tattoos and external surface landmark light systems.  To this, I say: YES DO MORE RESEARCH. As a patient, this is important to me. I don’t want a stupid blackhead tattoo looking at me for the rest of my life. If patient like me were engaged to set priorities in cancer research, I’d ask to figure out a way to get rid of the damn permanent tattoos, pronto.

Little black dots might seem minor in the grand scheme of things, but I didn’t like losing even more control of my suffering body one little bit. I asked my nice oncologist if it was medically okay to get a tattoo on my breast to cover up their tattoo. He said very solemnly, ‘there are no counter-indications to getting a tattoo.’ He probably thought: this woman is clearly in the middle of a mid-life crisis and losing her marbles, but he was too polite to express any judgment.

So I travelled to Hawaii and got my very own tattoo to cover up the radiation tattoo on my breast. I went to a place in Maui called Hula Girl Tattoo. The young dudes working there have seen everything and they didn’t even blink at my request. I told them they were doing good work covering up a middle aged mom’s cancer tattoo.

Part of getting my tattoo was to say: Take that health care system! I am in charge of what permanent marks adorn my body!  I’m also going to send the cancer agency the bill for the tattoo and see what happens. It was $200 US. (KIDDING. I AM KIDDING).

More seriously, I have this pipe dream that one day patients will work together with health professionals to set research priorities to figure out how to minimize the many indignities that are inflicted on us in hospitals.  Then we will no longer have cuts on our arms or permanent radiation tattoos.

I love the way every personal tattoo has a story behind it. (I also have three birds on my shoulder that symbolizes my three kids growing up and spreading their wings).  My new radiation-cover up tattoo is a constellation of hearts with a sprinkling of stars. A purple star has replaced the ugly radiation tattoo. One of the hearts is for my husband Mike, who has been my unwavering rock these past few awful months. (I didn’t think a tattoo of a rock on my boob would be very attractive).   The other heart is for me, to remind me to love myself. I’d post a picture, but the tattoo is in my cleavage. I know my extended family already think I share too much on my blog so I won’t mortify them further by posting boob pictures.

It hurt to get the tattoo, especially the part near my sternum, but Mike was there to hold my hand, exactly as he’s done the past eight months. Tears leaked out of my eyes, not because of the pain, but because I felt grateful my treatment is done, my cancer was caught early and I’m alive to tell this tale. My new tattoo is a symbol of my own story having cancer. This is my story to tell, not cancer’s. Slowly, slowly, I’m taking my power back, one heart in my constellation at a time.

hearts2

cancer isn’t a competition

Screen Shot 2017-08-18 at 2.09.26 PMWhile I’m a newbie to the cancer world,  I have been the mom to a kid with a disability for 14 years.  This doesn’t make me any kind of expert – it only makes me wary and tired.

In the disability community, I have detected a weird undercurrent of competition.  Whose kid is *more* disabled and requires more care?  Whose kid has been in the PICU? Who has an invisible disability?  A visible one?  Governments also love to make funding decisions based on selectively-chosen diagnoses.  Bureaucrats decide who needs support or respite or childcare, not families or people with disabilities themselves.

All this competition for dollars, compassion and care has fractured the disability community into tiny silos.  When we are torn apart, we are weak.

The best people rise above this competition.  I love when I connect with a mom about what we have in common (how awesome our kids are as well as struggles with schools, health care, government funding and society), not purely what our kids’ different diagnoses are.  Aaron has much in common with kids with different syndromes/stuff going on with them than Down syndrome (and he smartly doesn’t label his friends based on their diagnoses).  The same is true with cancer – I’ve been blessed to meet many folks in the chronic disease world the past few months who have been kind and supportive to me.  They don’t have to have the exact same thing I do to offer empathy on topics like body image, pain or identity.  Together we are all stronger.

After becoming a cancer patient, imagine my surprise that while breast cancer campaigns have done a lot to raise awareness, fundraising campaigns do not benefit me as a patient in any way.  I received medical care at our cancer agency (at no direct cost to myself, thanks Tommy Douglas) and even pick up my prescription at the cancer pharmacy so it is covered by the hospital.

But any ‘extras’ I might have required for my mental, emotional or spiritual health come at a cost.  These are available in the private sector and for those who either have insurance or can afford it.  Such is our two-tiered Canadian health system.

There are other tiers in cancer as well.  Have lung cancer?  Expect constant questions if you smoked (and so what if you did?).  Have skin cancer?  Ditto the questions about tanning or sun exposure.  Have any kind of cancer at all?  Many snide remarks about your ‘unhealthy’ lifestyle will be slung your way.

I consider this dumping on people who are the most vulnerable – the ole ‘blame the patient’ phenomenon.  This happens in the disability world too, with the dreaded:  why didn’t you get prenatal testing question that is asked of families with children with Down syndrome.  Isn’t just having cancer (or a baby with a disability) enough for a little bit of kindness?  It feels like we are all competing for a finite amount of compassion in this messed up world.

Dig deeper and breast cancer has its own weird pecking order.  Mastectomy (single or double) or partial mastectomy.  Chemotherapy or no chemotherapy.  Radiation or no radiation.  Estrogen blockers or not.  I didn’t have chemo and have felt that I don’t fit into the traditional world of breast cancer.  One nurse said to me:  ‘well, radiation isn’t as bad as chemo.’  Which I’m sure is true, but because I didn’t have chemo, radiation was indeed the worst thing that happened to me.  It wasn’t a walk in the park at all.  In fact, the first day I had radiation was one of the worst days of my life.  But I’ve learned to bite my tongue because I know there are others who have been through much more taxing treatment.

This moves into prognosis too:  NED? (No evidence of disease, the ‘survivors’) or mets (metastatic breast cancer, woefully ignored and underfunded)?

The only way to temper this strange competition in the health care world comes from wisdom I heard once from a spiritual care leader at the children’s hospital where I used to work.

She said:  You have your story and other people have their stories.  It is okay for these stories to be different.  

Let’s embrace each other’s stories without tearing each other down.  Let’s recognize that we have more in common than not and stop allowing governments, society and systems to fracture us apart. As a wise therapist once told me:  you can’t lose if you don’t play the game.  Opt out of comparison.   If we make it safe for every patient and caregiver (and health professional, too) to tell their stories – even if their stories are different than ours – then all the things that separate us will magically disappear.

the gentle hearts will help us heal in the end

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A painting given to my daughter, a gentle soul who is entering her third year of nursing school.

It is a commonly held notion that patients will only give feedback when care is either very bad or very good. Those who have ordinary experiences do not usually take the time to write a letter or fill out a comment card.  I’d like to commit to speaking up when things go well, as well as when they go poorly.  Here’s my story of a perfectly ordinary appointment.

Today I had time booked with a radiation oncologist at the cancer centre.  I think appointments with oncologists strike fear into most people.  It must be a strange job to be an oncologist and have people show up in your office terrified to see you.

This was my first time back at the cancer centre since my last day of treatment.  On the drive there, I was an anxious mess.  I drove as fast as I could in bumper-to-bumper Vancouver traffic and loudly played a Tragically Hip live album on the car stereo to give me some moxie.

Courage, my word
It didn’t come, it doesn’t matter
Courage, it couldn’t come at a worse time

My regular radiation oncologist was on holidays, so I was booked into see someone new.  I woke up this morning awash with anxiety thinking about this new doctor. What if he wasn’t kind? And yet another new person looking at my poor boob and this time a man to boot? Great. I might as well be marching through the cancer centre with no shirt on with the amount of dignity I have left.  I had to go to the appointment by myself, as my husband had to remain at home to look after our son. Being alone never helps my monkey brain either.

I eyed my bottle of Ativan before I left. Isn’t it ironic that the main reason I pop anti-anxiety pills is when I have an appointment at the hospital? I decided instead of taking a pill to park a few blocks away from the cancer centre and walk to see if the trek would help settle me down (it did).

I hiked through the leafy residential neighbourhoods, grabbed an iced coffee and snuck in the back through the parkade elevator. The sight of all the people with cancer waiting in the lobby always makes me sad. In fact, the whole building makes me sad. It isn’t my favourite place to go.

I dutifully checked in with the receptionist, who was pleasant enough, and sat down for about three minutes before my name was called. I have to say that the radiation folks are all very efficient – there’s very little waiting in that department. The nurse (I think?) who fetched me asked how I was doing. She didn’t share her name or her role and I didn’t have the energy to ask. We chatted a bit about burned boobs and fatigue and she left me alone in the room to change into a gown. The radiation oncologist knocked and came in a few minutes later.

He was a young physician with a gentle manner. He introduced himself and shook my hand.  He sat down in the chair while I was perched on the treatment table. I knew this was my last radiation oncology appointment and so I had my notebook with my list of questions for him.

In total, he spent almost half an hour with me. He never appeared rushed or glanced at the clock. He was both professional and friendly. He smiled and made eye contact. Except for my physical exam, he remained seated and clearly answered all my questions. It reminded me how important communication is for physicians. It must be challenging to read a patient when they first meet them to figure out how to talk to them like they aren’t stupid, but in a way they understand. Translating recurrence rates, statistics and risk factors into layperson terms takes talent and skill.

He wasn’t rushed and didn’t seem to try to be wrapping the appointment up in any way. I never felt as if I was intruding on his time. He was there for me for the entire half an hour. He said a number of times – if you ever want to come back and see us, just give us a call. He shook my hand again when he got up to leave.

I walked back to my car feeling calm and relaxed. I felt as if I was taken care of, mostly because of how this young physician behaved and not what he did. His friendly, calm, unrushed manner turned what could have been a stressful and upsetting oncology appointment into a perfectly fine oncology appointment.

I assert that the so-called bedside manner matters a lot. While our interaction might have been just an ordinary appointment, it meant much more than that to me. I’ve said it before but it bears repeating: it is these little things – a handshake, a smile, patience, eye contact, a calm manner – that mean a lot to us vulnerable, broken patients, every single time.

Medicine might cure (sometimes), it doesn’t always heal. This oncologist was not only a specialist, smart and brimming with lots of medical knowledge, but he was a healer too. And right now, I mostly need to heal.

Cheers to all the healers out there, who comfort and alleviate suffering just by holding space for their patients. Holding space is the ultimate demonstration of respect for patients.  I strongly believe that it is these gentle hearts who will help us heal in the end.

once i ate a doughnut

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the doughnut in question

It was your shitty lifestyle that gave you cancer, and if you don’t change your shitty lifestyle, your cancer will recur.

This was the key message to a two-day workshop for cancer patients that I attended last week. Half way through day two, I stood up and walked out. If my time here on Earth is limited, I don’t need to spend my days being lectured to about this kind of sanctimonious crap.

Instead, I went for a long walk, met my husband for a lunch (I had a salad, just for the record, since I’m feeling defensive now), went for another long walk along the beautiful Vancouver seawall and met up with a dear friend for tea. This seemed like a healthier way to spend my time.

I signed up for the workshop for my Summer of Healing after my breast cancer diagnosis and treatment this year.  I thought: I’ll show up and be open to learning. I lasted a day and a half before the blaming, finger pointing and judgmental tone of the lectures from the ‘experts’ did me in.

The room was filled with people with cancer who had lived healthy lifestyles. I’d call this the classic west coast way of life – in this case, there were many fit, nutrition-conscious women who happened to have breast cancer. (And they were pretty pissed off about it, too). There were also three young people whose cancer had recurred.

The presenters did not understand their audience. I’m not sure how blaming people with cancer for getting cancer in the first place is helpful. Patients do not need more fodder to add to our own feelings of guilt.   We are also not stupid.  We know that being active and eating healthy is important.  No kidding.

Even if I smoked, drank, was obese, ate too many doughnuts, warmed up my food in plastic containers in the microwave, does this mean that I deserved to get cancer or that I am less deserving of care or compassion for my cancer?

The ‘it is your own fault you got sick’ mentality is what is feeding the repeal of Obamacare in the US with the BCRA Act. I follow this awful Act carefully on Twitter and feel deeply outraged for my American friends. We’d be so hooped if we lived just a few kilometers to the south in the US – my husband and I are both self-employed, we have a kid with a disability and now I have cancer.  We’d also be bankrupt if we didn’t have proper insurance coverage.

This patient-blaming attitude is pervasive everywhere, including in Canada. (Although I’m extremely grateful for our Medicare, which is our quasi-universal health care coverage for hospital and physician office care. This means I don’t have to pay for my medical care because I got sick).

“Maybe you will live a healthier lifestyle afterwards,” a friend said to me on the phone, not so helpfully, when I was first diagnosed. I was lying on the couch recovering from surgery. This implied blame is thankfully mostly unspoken, but was the overt attitude at this ‘cancer care’ workshop.

The truth: cancer is a combination of genetics, bad luck, rogue cells – and yes, environment and lifestyle are factors too. But there is no one cause of all cancers – cancer is much more insidious than that. Our own cells turn feral on us for all sorts of reasons. If researchers knew what that reason really was, we would already have a cure for cancer. You can’t prevent cancer by doing any one thing.  (Read about a recent study from John Hopkins about the topic of risk factors here).

The real reason I think people are blamed for getting cancer is because we are all terrified of becoming vulnerable, needing help and dying. We think that we can do all sorts of things to avoid death.  Alas, there is a randomness to living that is out of our control. There was a 1 in 700 chance I’d have a kid with Down syndrome, but I had him anyhow. (Many feel my son’s birth could have been prevented, but that’s for another blog post). The current stat is that 1 in 9 women in Canada get breast cancer. I happen to be one of those women.

I know I have lived through many women’s biggest fear. Once you start with the boob-squishing mammograms, the idea that you might have breast cancer begins floating around in your mind. I thought I was immune from breast cancer because I breastfed all my children. That was an arrogant, naïve and mistaken notion.

I’m not suggesting you don’t live a healthy life, whatever that means to you. That would just be silly. But…stop the patient blaming when people do get sick. None of us are going to escape this world without acquiring some sort of illness and eventually dying. This is part of life.

My healthy lifestyle changes since getting cancer include: holding those who showed up for me close, more hugging, going to therapy to finally figure out how to love myself, meandering on long walks, marvelling at sunsets and remembering to breathe.  I still eat cheese, lie around in my bed watching Netflix and enjoy a tall glass of cider. Everything in moderation, folks. My best advice is to go forth and live your life under the guise of joy and not fear.

Cancer workshop organizers, shaming patients is not going to lead to behaviour change. (See this great post by Carolyn Thomas about ‘non-compliant’ patients).  Being perfect does not prevent cancer.  Try treating those who are suffering with respect and compassion. Suspend your pious judgment and meet people where they are at.  People who have cancer need your help (not your disdain) to learn how to heal, inside and out.

books, glorious books

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I have a long history of leaning on the written word to navigate turbulent times. When I first became a mother 24 long years ago, Dr. William Sears’ The Baby Book was my Dr. Spock of the 1990’s. Ariel Gore’s The Hip Mama Survival Guide and Anne Lamott’s Operating Instructions also lived dog-eared beside my bed.

After my first marriage split up, I tapped Anne Lamott once again, lugging her Traveling Mercies in my suitcase when I travelled to Norway with my two young kids. This book served as a salve for my single mom pain.

Martha Beck’s Expecting Adam was one of the only books published 14 years ago about having a baby with Down syndrome. It gave me solace when the baby I expected was not the baby I got. Roadmap to Holland by Jennifer Graf Groneberg offered me a crucial guide to being a new kind of mother. Later, Andrew Solomon’s Far from the Tree offered me important perspective on disability.  His book is a well-researched literary encyclopedia of parenting a child with differences. (I wrote about crushing on Andrew Solomon here). As my boy has gotten older, I have cherished Ian Brown’s musings on the value of people with disabilities in his The Boy in the Moon.

For general woe, I’ve sent Broken Open by Elizabeth Lesser to many a friend who is going through a rough time.   Books by strong women always perk me up. Cheryl Strayed’s Wild and Elizabeth Gilbert’s Eat Love Pray were both books before they were mainstream movies and I gobbled them up in the early days of my second marriage.

Cancer arrived, uninvited and unwelcome, in my left breast earlier this year. In an attempt to comfort myself, I have accumulated too many cancer memoirs, most of which I haven’t even cracked open. I’ve ventured into a few, but found them too cheery, too preachy or too prescriptive. I’ve piled them away in my bookcases for later.

I keep trying on the written word for size. The cancer agency happens to be close to an independent bookstore, so I have spent many hours loitering in the aisles between radiation treatments and oncologist appointments.

These are my favourite books I’ve read over the past months. Many of them came at me sideways, as they aren’t necessarily full-on cancer memoirs, but they contained sentiments that touched on issues that have become suddenly important to me.

Rising Strong by Brene Brown – I’m desperate to gain some resiliency and Brene’s TEDx Talk about vulnerability remains one of my favourite TED talks of all time.

The Bright Hour by Nina Riggs (I reviewed this for The Underbelly, here). Although it is called A Memoir of Living and Dying, I found it to be a beautifully hopeful book.

Ditto with Paul Kalanithi’s When Breath Becomes Air, a tender and tough book about a neurosurgeon who happens to have cancer.  I read it a year before I was diagnosed, but recently revisited it again.

Hungry by Roxane Gay – helped me start to forgive my body as I’ve struggled with the body issues that have accompanied this damn cancer.

Birds, Art, Life – Kyo Maclear’s book was deeply soothing to me as I was searching for grace while waiting for treatment. I wrote about it here.

Teva Harrison’s In-Between Days is both funny and telling – a creative graphic memoir about living with metastatic breast cancer.

The Emperor of all Maladies by Siddhartha Mukherjee is an impressive, Pulitzer Prize-winning biography of all things cancer, useful as I am trying my damnest to understand this elusive disease. This book is painful to read if you actually do have cancer, but well worth the effort.

Illness as a Metaphor by Susan Sontag is a classic book that analyzes the tired old ‘cancer as a battle’ analogies and got me starting to ponder my new identity as a sick person.

I’m still trying to figure out so much. I’m a nerdy library girl at heart and reading books is my way of gathering information and soothing myself.  Lately, I have remembered that books have always been my friends.

What books provided comfort when you went through dark times? I’d love to add to my collection – please consider leaving a comment with your recommendations.