Tag Archives: hospice

water was everywhere

DSC_0336I remember the rain, the gentle yet relentless rain, a percussive background to your rattled breaths. You were leaving, and water was everywhere.  Tapping against the window.  Filling your lungs. Running down my cheeks. Even my dreams were of a tidal wave.

Later that day, the sun had set but the rain persisted. There were beads of water clinging to the body bag as you rolled from your home into the car that took your body to the scientists that could learn from you, and from the terrible cancer that never flinched.  One of your final mandates had been to hang  Christmas lights, and the lights stayed on continuously during our vigil through your final days.  The droplets on the plastic bag reflected the glow of multi-colored orbs, a million tiny rainbows glimmering in the darkness

Its raining in San Antonio today, two years after you died. I stand outside and let a few drops of rain kiss my face.

I have lost you, but still, there is snow and ice and rain and steam and babbling streams and crashing waves. I seek waterfalls in the desert, I soak in my bathtub in the quiet of the night. I breathe billowy puffs of air in the cold. The water still holds me, and and clings to my sadness with the light of a million tiny rainbows.

 

JANELLE MARIE SHINER

8/29/53-12/13/11

025 - Copy

 

 

the trappings of December

Not even 36 hours into December, and it already feels like a long month.

Last year around the first of December, my mother asked me if I thought she’d live to see Christmas.  I told her I didn’t know, with a not-so-hopeful tone to my voice. Her shoulders fell, and she turned her gaze downward- she mostly communicated with her body language; her gestures  betrayed the feelings she so rarely voiced. I quickly added that I hoped so and gave a weak smile, but it was too late.

I wonder why I needed to be so brutally honest in that moment.  My mother loved Christmas.  The holiday music, the tacky sweaters (she owned at least 6), the family gatherings.  I wish in that moment I had held her hand, and looked into her eyes and said something upbeat, like “why not?” or “Christmas with you would be wonderful!” She would have done something like that for me.

She didn’t live to see Christmas, but she almost made it; she died on the 13th, and she got to enjoy part of the holiday season. Christmas of 2011 was nothing like Christmas Past, but her cousin artfully decorated the inside of the house, and we strung multicolored Christmas lights along the roof that cheerfully twinkled in the long, dark nights.  I found CD after CD of Christmas music, and played the familiar tunes softly for my mother as she was unconscious in her bed.  The machinery of thoughtful friends and community members kept us fueled with sugar.

This year, the holidays have returned to semblance of the norm. I participate in the holiday parties,the home decorating, the gift exchanges. I unfurled dusty decorations that haven’t seen the light of day in two years; my husband hung multi-colored orbs from our mesquite tree that sparkle in the Arizona sunshine.

Holiday rituals bring me joy, but I feel her absence so acutely.  The songs that ushered her out of this life fill my ears and I long for that which has slipped away on an invisible current.

I will always remember her padding in the kitchen, making cider or cooking up a beef dinner for her relatives wearing her latest Christmas sweater acquisition, jingle-bell earrings flashing under the fluorescent light.  She would flash me a big smile and say without words that yes, this is the best stuff of life.

Christmas 2008

Christmas 2008

the light amidst the struggle

One morning this week, I spied a woodpecker perched on a tree outside of the Cancer Center. Such athletic, flighty creatures, it seemed odd that he remained perfectly still, appraising me and the rest of the world around him with his unblinking eye.  Only a few feet away, I stared back and sipped my tea and my bones started rattling deep, deep inside:

I don’t want to go to work!!

Its odd, I almost always walk through the doors of the Cancer Center with a smile on my face, eager to see patients and start my day. But its been a struggle lately.  I’ve been tired, and working so very hard.  The endless stream of emails, prior authorization requests, distraught patients, hospice talks, conflict between staff members, and ever mounting pile of unsigned notes are taking their toll.

Or is it something more internal that caused me to be frozen under cloudy sky, unable to walk through the Cancer Center door?  I haven’t been taking care of myself as well as I could, but its not all been miserable either- I have been eating pretty well, and taking my dear dog for runs in the dark November mornings.

And then there are the anniversaries that quietly haunt me.  The anniversary of the day I napped next to my mother and noticed she was breathing differently.  It was so subtle, it escapes description.  But I knew something was different.  And she smelled different too- not bad, just ever so slightly different. The dying process started with a whisper on November 13th, 2011.

And then on November 14th, I got the call at 6 in the morning that she was hospitalized with a bowel obstruction, and in a matter of minutes I was barreling down the highway again in my Corolla, headed to Phoenix and biting my nails I could make it there in time. Turns out, we had quite a bit more time: almost a month.

Then there was the cascade of events and phone calls and praying and weeping in lobbies that lead her to be sent home on November 15th with hospice care. It felt so right and so wrong and so unbelievable, a dream and a nightmare.

Life had a singular focus: my mother.  There was no room for the stuff that doesn’t matter, like work stresses.  There also wasn’t room for a lot of stuff that does matter.

So, this year I’m doing well.  I smile a lot, and even have started worried about some of the small stuff again.  But this year, on November 14th, I struggled to go to work. I stood outside of the clinic under a grey sky, longing to stay still and sip tea and stare at beautiful birds. I had little to offer to the patients waiting for me, but I gave them what I could.  I needed not to give, but to receive.

It wasn’t an easy day for me. But perhaps the universe understood my plight, because when I came home there were two packages waiting for me: dried corn from my mom’s dear friend, and a book from my dear sister.

I don’t always get what I want, but sometimes I get what I need.

a sign of the times

Only now, well into November, are we starting to feel the chill of Fall in the desert. Long nights descend, and although full of sunshine and 80 degrees, the days are short, and temperatures quickly plummet under the heavy blanket of darkness. At high noon in the warm sunshine, it can be easy to forget when and where we are in our path around the sun. Not fooled by the heat, the fig tree hears the silent call in waning daylight.  Her brown leaves flutter to the ground and remind me, the native Midwesterner, that yes, Autumn is here.

I had different signals in my childhood, and one of them was freezing my ass off at the bus stop every morning after about the third week in September.  But if that wasn’t enough of a hint,all I had to do was look at my grandmother’s door.

She was not a devout person in a religious sense, but she believed in corn. Every year she hung dried ears of corn to mark the season, the colorful kind commonly referred to as Indian Corn before such titles were considered potentially offensive. She hung it on the door to her double wide when I was a young girl, her apartment when I was a bit older, and in the hallway in her assisted living facility when I was older yet. Year after year, despite her changing circumstances, the corn reappeared.

Last year at this time, my mother had been discharged to hospice.  She was dying, and it was the last autumn she would ever know.  Her legs were swollen with fluid and she walked with a wide, awkward gait.  But she pulled out a managed to pull out a trio of colorful ears from a storage box and waddle out the front door.

“What are you doing?” I cried.

“Hanging some corn” she replied.

This year my mother is dead, and my grandmother is plunging deep into her dementia in a group home in Sun City.  She doesn’t have a door to hang her corn on; she doesn’t remember this old habit that was part of her annual routine for decades. Fall is here, and for the first time in my life I want some corn for my front door.  A thread to tie through the generations, despite being severed by illness and death; an organic symbol of where I came from.

 

what I have forgotten

When my mother was dying, my friend brought us two books of poems, an compilation of Jacqueline Kennedy’s favorite poems and an anthology of Edna St Vincent Millay.

I read to my mother as she was unconscious, breathing heavily.  A good poem will wrap its arms around you, and in those days I needed constant embrace.  At first it felt awkward; I hadn’t read a poem out loud since high school. But almost immediately, the words of St Vincent Millay and Elizabeth Bishop and Yeats and Browning and Rilke brought me peace. They were just what I needed. I hope the beautiful words, the rhythmic stanzas reached down and healed a part of my mom as well.

I loved poetry during my adolescence.  Walt Whitman’s earthy affections gave me delightful shivers, Sylvia Plath’s rhythmic pain chilled me, Kobayashi Issa opened my eyes, TS Eliot gave perfection in an imperfect world.

I read it.  I wrote it.  I was 2nd place for two years running in the Minneapolis-Ibaraki-Shi Sister City Haiku Contest (high school division).

And then I stopped.

Why do we abandon what we love, and cast away a part of our heart as though it were nothing special?  Why are we so easily lost to ourselves?

To love poetry or softball or art museums or 1970’s romantic comedies or vintage cameras is part of what makes each of us unique and special.   In the years I was not reading or writing poetry, I was turning away from who I am and what makes my life full and happy and beautiful.

Life is short, often difficult, and messy. We cannot delay what gives meaning and joy.   Inviting in beauty, reuniting with a long-forgotten part of your soul can be as easy as picking up a book of poetry.  Or going for a ride.  Or tossing the ball around.

 

What things that brings you joy have you left by the wayside?  How can you bring them back into your daily life?

my work

Here I go, breaking my rules again… (the one about not writing about work)

Its been a hard few weeks at the office.  Even though I feel I’m divinely suited for this job (nurse practitioner in oncology), sometimes its overwhelming, and I think maybe life working in urgent care or a weight loss clinic wouldn’t be so bad.  This last month has been full of disease progression, hospice discharges, and death.  People I have grown to love, struggling with pain, dying too young.

My years of working in bone marrow transplant taught me a certain brand of detachment–  how to stay rooted in the present and not be attached to a future for the human beings in front of me.  It was a powerful lesson in letting go; I couldn’t look into the eyes of children with high risk leukemia day after day and worry about what was awaiting them next month or next year– it was unlikely to be a healthy, normal childhood. I had to care for and advocate for my patients, do the very best job possible every day, but turn over the outcomes and what would happen tomorrow to the universe, God, Buddha, Mother Mary, physicians, someone or something else other than myself. Because there are patients that will die despite a favorable prognosis and everyone doing the right thing, and there are patients that will somehow fight their way out of the grip of death and against all odds, survive. You never quite know in this business.

My patients these days are healthier and many of them are cured.  Even the women with aggressive, metastatic disease usually live years rather than months. I see them week after week, month after month, and I grow very fond of them.  We laugh together, we hug, we share photos and stories, I meet their best friends and relatives.  Its hard to say goodbye after such a long relationship.  I thought I was getting better at this but now I’m not so sure.  My loss of my mother has made me more sensitive to what the families are going through. As I work through my own grief I can feel what the surviving loved ones are experiencing.  It hurts.  I also see my mother in some of these patients and feel as helpless as I did to fix things during her illness.  I sit in the exam rooms with my dying patients and look down at my empty, searching hands.

And yet perspective is everything.  I am greeted with success stories every day.  These women plunged down the rabbit hole of cancer treatment and emerged on the other side, bathed in sunlight. As elusive as those rogue cells can be, resorting to every dirty trick in the book, sometimes cancer is completely slaughtered with the arsenal of treatment.  It happens.  An everyday miracle.  A billion cells, a million microscopic explosions in the battlefield of the body.  Victory down to the smallest unit of life.

Even when the war cannot be won, the enemy is usually held at bay for a while.  Mom’s cancer was very drug resistant, but I still think chemo bought her time.  Important time.  If she were here, I think she’d say that the nausea and the hair loss and the fatigue was worth it for her.

So, what I do weighs on me sometimes.  But it matters.  I can’t forget that.

butterfly birthday

let flowers bloom. my birthday Adenium

Today is my birthday.  I’m 32.

In general, the years are speeding up as I age, yet this one has felt long.  I can’t remember my birthday from last year very well, other than I spent it away from my mother who was in Houston, and was feeling the special flavor of unease you feel when separated from a sick loved-one. So very much has changed since then.

I have struggled with grief and despair this week, but this birthday seems particularly blessed.  I have been touched by unusually thoughtful gifts and expressions of love.

  • my coworkers pulled together money to purchase a piece of art that was for sale at the Cancer Center, simply because they noticed I would look at it every day and smile
  • a woman I deeply enjoy but have never had the opportunity to know well gave me an exotic plant crowned with beautiful pink flowers. Her husband nurtured this plant from seed for years in his greenhouse.
  • a woman I discharged to hospice months ago, fully expecting her to pass away soon, walked into the Cancer Center and gave me a huge hug, some small gifts, and a card covered with butterflies.
  • and more…

I have often felt awkward on my birthday- uncomfortable with the attention and the unilateral gift-giving.  This year I feel profound loss, yet an even greater gratitude for what I do have. Every card, gift, text message and embrace has been meaningful and beautiful.  I am part of a huge network of love, with lacy fingers that envelop the globe.  No, I don’t deserve it, but in life we get both less and more than we deserve. I’m 32, and way overdue to learn to accept a love that makes me shudder with its magnitude.

My friend told me “Its your butterfly birthday!” And she is right.  Grief is transformative. Our losses can bring us to the brink of madness, and at the same time blast apart our shell, open our hearts, let the light in.  Grief rolls in like a 10 armed Hindu goddess that can destroy the universe with a flick of a wrist and maniacal smile, yet if you don’t go down in the fiery blaze she’ll also take away that which limits you.

I wish we could keep our loved ones by our side forever, but the universe is built on death and destruction.  Still, flowers bloom in the ashes, babies are birthed in pain and blood, the worm is torn apart to become a winged thing of beauty.  This is the mysterious, wonderful, terrible, and awesome way of the world.