The Safe Harbor of the Swedish Cancer Institute in Issaquah

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Yesterday, a wise and insightful friend posted this on my Facebook page in response to my last blog post, Good News, Strange Waters.

…The shedding of identity and expectations as a burden to your fIght for survival, the fighting for survival while lost at sea. Exausted. We people must seem so small and distant, little specks on a shore you can’t see. I can only imagine
— Marika Reinke   (She blogs at https://marikareinke.com/)

Her comment made me realize that I do not see any of you as small, distant, on the shores far away from me.    You don’t even exist in this emotional inner landscape I carry with my cancer.    Sometimes,  by following the blogs of other stage IV breast cancer survivors,  I get a glimpse of somebody off in the distance, navigating waters similar to mine.  But so far I have yet to meet anyone, even a peer stage IV survivor, who is in the exact same emotional space at the same time.

My Stage IV emotional landscape never leaves me.  But I also live, simultaneously, in many other emotional worlds:  mom, spouse, friend, sister, colleague, patient, cousin, neice — and even though both of my parents have now died, daughter.  And while these emotional worlds can rupture into each other, a lot of good therapy has helped me disentangle them a bit.

Still, just as I am always a mother (even at girls’ weekend!), I am always a stage IV cancer survivor.

You would think that driving to the hospital for appointments with my oncologist, scans and treatments would pull this emotional cancer world into the forefront,  shake it up like a minuature snow globe.

At the beginning of my stage IV journey,  patient-emotion-world and stage IV-survivor-emotion-world were one and the same.     But there is something magical about the caregivers at Swedish Cancer Institute in Issaquah.   As a team, as an entire staff, they were able to hold space for me to create a patient-space as a safe space, rather than a space that was synonmous with my stage-IV emotional space, or worse, a space that was filled with so much social-emotional garbage that  big emotional ruptures would be almost unavoidable.

OK.  Examples of social-emotional-garbage spaces I’ve encountered at other medical institutions.

Pity.

The medical provider,  days after I discovered I had breast cancer and before I was even staged yet, who told me she spent all evening holding her children and crying for me.

Bias.

The medical provider prepping me for surgery who tells me she can’t stand patients with tattoos who complain about pain and that she really loves X Seahawk’s star because of what a great Christian he is.

Belittling Humor

The medical staff who joke at a colleague’s expense behind his back, mocking, in this case, his height.

Bootstrappers

The radiation oncologist who asks “How did this happen to YOU?  You did everything “right”!   The medical assistant who assures me my outlook will be better than other people’s outlook because I’m so positive.

The list is long.  And the thing that stands out for me is that these are the behaviors we indulge in when we are consciously or unconsciously separating ourselves from someone else’s situation.  We placing ourselves up a bit on the pecking order or declaring our own place safer, better than the situation of the person we’re facing.

Now, my teenager will be the first to let you know that I am clearly among the sinners, here.    And I will be the first to assure you that she’s right.  And I guess it is because I do personally know how easy it is to practice social-emotional-garbage that I am so fascinated and impressed by people, especially groups of people, who do not.

There’s been a lot written on holding space.  I can’t remember if I first saw this article through a post by Kim Pollock or whether it was one of the new stage IV bloggers (Dikla Benzeevi, maybe?) I met at the Novartis Advanced Breast Cancer Bloggin Summit this year.

holding-space_babyhttp://upliftconnect.com/hold-space/

Here is what it comes down to, for me, today.

The medical staff at Swedish Cancer Institute in Issaquah center themselves in love and vulnerability.

Here’s an example.

One day, sitting in my chemo chair and enjoying the warm sunlight, I overheard another patient getting upset about how long his treatment was taking.    By his voice and, really, his entitled attitude, I pictured him as a White man, probably at least 70 years old.

He was letting it rip.  Complaining loudly about service, staff and delays.  He yelled out that he’d HAD IT and he WAS LEAVING.  He was sick of being there.

The first nurse I heard approach him leaned into him with concern and care.

“Yes.  It’s been a long day.”

Now it’s not the words the staff were using that did the work.  It was what you could feel in those words.   It was a warm stand of support.  There was nothing patronizing.  Nothing belittling.  No “now now” tone.

And immediately this nurse was joined by other nurses.  And they held the same, supportive tone.

“Of course.  You have the right to leave any time  you want.”

“I understand.”

And then…

“Your doctor wants you to stay here because he wants to ensure your safety. ”

“You are free to do what you want to do.”

“It’s been a long day.  You’re right.”

Now, you could say exactly these same phrases and create a completely different environment.  It’s the heart, not the words here that works.

Now I couldn’t see any of this.   But when I listened to these nurses speaking, I could see them in my mind’s eye, standing in a calm, caring circle around this man.  Calm acceptance.

No judgment.  No irritability.  No defensiveness.

You could feel the love surrounding this grumpy, frustrated…and probably scared man.

These nurses, medical assistants, social workers, radiology technicians and doctors pretty much live in this authentic space when they are here with us, the patients.

We chat about spouses.  We tell stories about our children.  We talk about vacations and news stories.  But in the sharing of our lives, the focus is always on growth, on vulnerability, on love.

There’s a lot of quiet joy, even in our shared insecurities, as we laugh about the messes we create in our private lives.

How do they do this?  Is it a training?  A list of do’s and don’ts?  A hiring practice and a particularly insightful hiring authority?

What role does Sue’s amazing retreat at her cabin play in keeping that heartsong alive?  What makes those busy nurses decide to take unpaid time away from their families in order to come together at these retreats?

Of course the diversity the staff must also contribute.    There are enough different ways to walk the earth represented there (race, ethnicity, class, sexual orientation, and more)   that a group-think sense of “we know better” has a harder time grabbing hold.

I like to think it’s a heartsong of strength in humility, of pride in growth over individual accomplishment and a talent for listening to understand.  I like to think that once this heartsong is created and moved into the center of the professional culture, it begins to simply descend upon new hires and envelope them.

I’ve often thought of safe spaces like Bellevue College’s LGBTQ Center as simply refuges from the microaggressions and outright hostility students can encounter outside of those doors.  Swedish Cancer Institute has helped me realized that safe spaces are where we can trust that the people we meet will hold space us and whatever emotional worlds we bring in with us.

Whatever it is that they do to create this space at Swedish Cancer Institute in Issaquah, I see it.  I am grateful.    The storms of my inner stage IV world can splash on hard days and on easy days, the calm water can spread out onto the warm sands of their support.

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Good News! Strange Waters.

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CA 27_29 Cancer Tumor Markers 9-29-2016

See that line of four dots descending sharply from July 26th to now?  Those are falling tumor markers.  My tumor markers are back to February 2016 levels.   We think that 1300 tumor marker measure in June 2016 was in error.  So that means I haven’t had this solid of a response, as measured by tumor markers, since August of 2015.

Last week’s brain MRI came back clear.  The gamma ray treatment from July seems to be melting those old tumors away and there is no evidence of new metastases.

Moving from Xeloda to Halaven is HEAVENLY.  I no longer have foot or hand pain.  I no longer need diapers.  Salads, whole grains and red wine are back on the menu.   I don’t even need afternoon naps!  I’m working again, on a limited schedule, and I love it.

But when people ask me how I’m doing, providing the update makes me grumpy.

The few times I have freaked out a bit on my oncologist, she’s sent a kind, empathetic note about how this is a marathon, not a sprint and how it must all feel like a roller coaster.

I think that’s a good metaphor to use with patients.  It doesn’t assume much.  It doesn’t lay blame.  It holds some hope that things are going to head back up again after an emotional dip.

But today is National Metastatic Breast Cancer Awareness Day, so I thought I’d try to take a stab at a metaphor I think better explains my grumpy responses to good news and good results this year.   Stage IV breast cancer isn’t a rollercoaster.  It’s an attempt at survival while lost at sea.

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The first very time my ten year old tried to play in the big surf on a Hawaiian beach, a strong wave picked him up and slammed him down on his face, snorkel and mask crushing into his lips. His big puffy bruised upper lip prevented all salt water fun for that vacation.

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10-year old Paul’s big fat upper lip.

I had not considered how much I had trained, as a kid, to swim in dangerous surfs, and that Paul, had never swam in a surf at all. Deadly cold water, threatening undertows and sneaker waves make ocean water play a less than desirable activity for most of us here in the Pacific Northwest.

I’ve been a swimmer all of my life.    There was a neighborhood pool Francois and I liked to workout in when we lived in Paris.  The pool was open to everyone, for everything, pretty much all of the time.  Lap swimmers made their way through children playing by swimming head down with a menacing grimace.  As we flipped turned, we could see toddlers lined up for swim lessons a few feet away.

At our pool, they would take these tiny little humans, pick them up, and throw them into the deep end of the pool.    A big splosh and a lot of tears.

Bringing up bebe.  LOL.

Stage IV cancer isn’t a roller coaster ride.  It’s like learning to surf, French style.

With a stage IV diagnosis, you suddenly wake up out at sea with a huge wave looming over you.  You don’t know the tide.  You don’t know the weather.  You don’t know what the normal wave patterns are.  Is this a Tsunami?     Are there undertows?

You are smashed face first into the sand.

So you start rolling with the hits.  You learn to keep your head up and breath through your mouth.  You learn to keep your core firm and strong so you can float over and through the biggest waves.  You close your eyes a lot.  You count or sing to yourself to keep yourself calm when you’re underwater.  And if you’re lucky, you have someone to hold on to,

Eventually, if you the wave pattern stays a bit consistent,  you figure out that you can shed some of the baggage, the layers of self, of ego, of attachments that are weighting you down.

You let go.  You let go of sunset walks in retirement with your spouse.  You let go of attending your child’s wedding or the birth of your grandchildren.  You let go of feeling the future is your job to control, to improve.

Shedding these parts of yourself is painful.   It’s not just clothing.  It’s skin and fingernails.  It’s hair. It’s your shell.  It’s layers of your identity.

But shedding helps you swim better.    Each wave towering, a change in treatment, poor scan results, new side effects, it all still sends fear rippling down your spine, but you begin to learn the tides.  You can gauge the strength of the oncoming swell.  You learn to dive into it a bit better.  You move more easily.

And there’s a lot of beauty in it.  There’s a lot of joy.

You’d think it would be the big storms that would be the hardest.  The increasingly grueling side effects (Xeloda!) or the darkening prognosis.  But after a while, it’s not the intensity of the swells or the rage of the storm that challenges you.  It’s the sudden shifts.

The calm waters are most unsettling.  There’s a certain high that comes with the extreme sport involved in navigating the high surf, a hyper vigilance, an awareness…an ALIVENESS.  It can be intoxicating.

It can be fun.

But when that storm suddenly leaves, you’re left on your surf board, alone in calm sunny waters.

Naked.

Windblown.

Disoriented.

A bit too warm.

Suddenly the dry salt on your skin is uncomfortable.  You remember you have to pee.

Every day annoyances start to become more discernible.

But your horizon hasn’t changed.  The landscape is the same.  You hold yourself tall, core firm,  arms tense as you paddle board across these miraculously calm waters.

And you grow tired.

You’re grateful for the calm.  But the open, clear view of a horizon is no longer a line of connection between sky and sea, a target that continually slips into the future as you approach it.  Instead,  the horizon is the edge of the world, the end of your existence.  Moving towards it on calm waters is exhausting.  It’s demoralizing.

But it’s still beautiful.  And I’m still grateful.

But  such a big, empty, lonely ocean.  And there’s no place to sit down.

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This post was inspired by a new friend of mine, a very young stage IV breast cancer survivor, blogs about her experience at Booby and the Beast.   Her new baby was 5 months old when she was diagnosed with stage IV breast cancer.

Just the fact that this woman has learned to stay afloat under the heavy attachments of a mother-infant bond, is a testament to her strength.    When I imagine how much she has had to shed of herself and her future, how high those emotionally suffucating waves of grief and loss were, how hard she  had to work just to breath.  Just to survive intact as a mother, a wife, a daughter and friend.

I can’t breath.

I cannot even imagine what she has had to shed in order to be present, to be happy with her impossibly short life with her impossibly young child.

When I heard she was told, this spring, after five years of fighting her metastasized cancer, that the entire stage IV diagnosis was probably in error, that she most likely had sarcoidosis and not stage IV breast cancer,  I was upset.  Angry.  Hurt.  Disappointed?  Overwhelmed.   Frustrated.  I was devastated.

And it took me awhile to even begin to understand my own response.

I imagine her on that paddle board, out in the middle of that ocean of stage IV.  I imagine the landscape suddenly disturbed, static across the blues of the sky, across the depths of the sea.  I imagine a world fading into darkness and then, suddenly,

She’s on a sidewalk, in a city, surrounded by people, noise, chatter.

And she’s naked.

Talk about reverse culture shock.

She will never lose the memory of her fight as sea.  She will keep her strength, her skills of shedding and growing stronger.   She’ll always know how to swim, how to jump the waves.  She’ll be able to see us women out there on the horizon when others cannot.

But I can’t imagine the weight of that transformation.  The overwhelming stimulation.  The overwhelming choices for how to cover oneself, how to walk through the human activity of the living.

I can’t imagine.

http://www.boobyandthebeast.com/2016/10/an-announcement.html