Monday, February 1, 2016

Freedom Sunrise

Freedom Sunrise (Rob Cohen, 2016)

This is a watercolor painting Rob made while in the hospital. An art therapist visits twice a week and on one day, he painted this. 

For the last week I have been looking at it and find each day I come to like it more and more.

Sunday, January 31, 2016

#SOL16: A Downward Spiral

House by the Tracks (M.A. Reilly, 2009)

Hospitals are curious places on the weekends. They resemble small cities where most of the inhabitants have left on some summer holiday, some winter jaunt and those few remaining are left to rattle around in a too large place waiting for Monday to arrive. Skeletal crews keep the drugs coming and patients are handed off to partners and residents who arrive at dawn to check in with those who remain.

And still no Godot arrives.

It's late day and across the hospital hall a man exits a room and our eyes meet, then quickly look away, each knowing the knowledge we now have is specific, limited to those who love others who are battling cancer.  To see this in another's eyes is to know an uncomfortable truth. All day Rob has been sleeping off and on. The last bit of afternoon sun, falls across the back of Devon's neck. We are quiet.

Yesterday we learned that the cat scan showed three more spots of cancer in Rob's body whose presence helps to explain the terrible increase in abdominal pain he has been feeling.  Pain so great that being doped is preferable, until being doped becomes another problem that families must attend to. The blood tests confirm another staph infection. This staph is highly responsive to antibiotics, unlike the last two he has had. All of these infections have come at the hands of health providers.

Some days I imagine how different our lives might be if Rob did not have the port put in on the 14th of September--the infected port that starts this downward spiral moving.

I I.

As we enter the sixth month post-cancer diagnosis, I find myself still being momentarily jolted from a fantasy. In this dream, I imagine living like we did: taking a walk together, planning small holidays, doing something impulsive, laughing at a movie, making detailed plans about work, talking with our son about his aspirations, staying up all night and talking, making a meal in our kitchen.

Simple things we no longer can do.

Thursday, January 28, 2016

#SOL16: Love

Breathe (M.A. Reilly, 2014)
Rob sleeps.

It's late and the darkness beyond the hospital window is no longer new. Everything quiets as night settles deep inside its bones.

For the many hours I spend seated beside his bed, my husband sleeps most of them, waking now and then to mutter a string of random words, a Morse code I sometimes can piece together. And here's the strange thing about love for though there is surely tedium to this waiting,
            to not having him home, to the unsettled constancy that now defines our lives--

somehow, this antiseptic space is the only place where the tremor in my hand slows
and my heart steadies.

I notice the rise and fall of his chest and turn away,
turn back to this screen to write.

All the time, I listen for his breath.

Sunday, January 24, 2016

SOL16: Uncertainty Again

Winter Night (M.A. Reilly, 2014)
It took my son and I hours to dig out after the big snow this past weekend. Neither of us could get the snow blower to move, let alone work, and so we tackled the two feet of snow with two shovels. Rob normally mans the snow blower. While we worked to remove the snow, I was unaware that my husband was being treated for what a doctor would later tell me he thought was a urinary tract infection at the rehabilitation center he has been staying for the last two weeks.

On the morning of December 30, I called for an ambulance because Rob could no longer walk nor stand for any length of time and nothing Dev and I could do could help him to get down the three steps from the house to the car in order to go for a chemo treatment.  Rob was transported to the hospital where he remained. On January 8 he had spinal surgery to reduce the spinal cord compression that the malignant lesions wrapped around his spine had caused. He remained in the hospital five more days and after being fitted with a spinal brace was transported to an acute rehabilitation center where he remained until tonight.

Although I see Rob each day, this past weekend was the exception given the 2 feet of snow.  I was unaware that Rob was even ill. He had told me early in the morning that he was in pain and taking pain medicine.  I foolishly assumed he was talking about his shoulder as he had hurt it earlier in the week.  Throughout the day, I tried calling him and each time I grew more concerned because either he did not answer or when he did he was just waking up and was so unclear.  At 5:00 I called the nurse's station as I was so worried and learned there that Rob was being treated for an infection. Apparently the infection was painful--painful enough that he was drugged and was largely incoherent each time we spoke. The nurse told me she would have Rob call and when he did he had difficulty carrying on a conversation.   I let him rest and tried again and because of the heavy narcotics he has taken, our conversation was one-sided and his speech was incomplete and largely unclear. I called the nurse again at 7:00 after talking with Rob and not understanding anything he had said. There is no terror like the feeling that the man you love is away from you, your care and no longer sounds anything like himself.

A little after 7 a doctor from the center phoned and said they were going to send Rob to a hospital as they were worried given the fever he was running (fever, what fever?) and they were not equipped to diagnose what was wrong.  The initial diagnosis of an infection may not have been correct. His kidneys have stopped working.

And so now, Devon and I wait in the emergency room at the hospital for Rob to arrive. The last time he was home was the morning of December 30, 2 days after our 25th wedding anniversary. This is what it is like when your husband diagnosed with stage 4 lung cancer is beyond your care, beyond your touch.

Thursday, January 21, 2016

Slice of Life: Lost/Loss

The Hospital Wing (MA. Reilly, Italy, 2009)

Five months ago, Rob, Dev and I drove two of Dev's friends who had spent a week with us to a train in Newark so they could travel home to Virginia. Later that night we decided to end summer by taking a quick trip to Maine. We had planned to stay at a favorite inn and I promised to make reservations in the next few days after Rob's cat scan was done. He had been having some pain in his chest and a chest x-ray showed a smudge that was thought to be artifactual. A day later, our doctor phoned, waking us up to tell Rob that he had cancer. I drove to pick up Dev from a friend's home and we then joined his father at the doctor's office.

There's no language I know that can suitably express the ways in which all of our lives have changed since that call.

No language.


Woman in a Crowd (M.A. Reilly, 2015)

During the last five months I have learned to respond to an onslaught of complications 24/7.  There is almost always a complication that Rob is faced with--complications that I have not anticipated and require response--often immediately. As Rob takes the necessary steps to battle not only the cancer but the many illnesses that have arisen alongside the cancer, the foundation that supports his efforts rests squarely in my hands.

Well intending friends and family ask if I'm taking care of myself and I realize that so often there is little self left and at other times there is a self I have not known that seems to be emerging.

I seem to have misplaced the woman I know I must have been. I'm writing this here as I don't want to forget this later--to gloss over it.  What gets lost and found is important.

This is at the center of loss.

Wednesday, January 13, 2016

Poetry Break: Harlem Night Song

Moon Over Harlem (M.A. Reilly, 2012)

Harlem Night Song

     -Langston Hughes

Come, Let us roam the night together

I love you.

The Harlem roof-tops
Moon is shining.
Night sky is blue.
Stars are great drops
Of golden dew.

Down the street
A band is playing

I love you.

Let us roam the night together

Tuesday, January 12, 2016

A Poetry Break: Old Territory. New Maps.

A Room of One's Own (M.A. Reilly, 2009)
When I read this, I was stopped. Sometimes poems do that to me.  Halt me in one breath and then invite me to wander, ponder, consider how the poem and the meaning I am making intersect with my life. This one does just that as poems about the tenacity of love often do. I am reminded of the journey I am taking with my husband and how space and time are so often measured by gesture, by suggestion, by longing and absence and the made thing. 

Old Territory. New Maps.

You plan an uncomplicated path
through Colorado’s red dust,
around the caustic edge of Utah’s salt flats
a single night at a hotel
in the Idaho panhandle. Our plans change.
It’s spring, we are two Indian women along
together and the days open:
sunrise on a fine long road,
antelope against dry hills,
heron emerging from dim fields.
You tell me this is a journey
you’ve always wanted to take.
You ask me to tell you what I want.

I want my longing to miraculously
bring you through the barrier of your skin
into my blood so that I can possess you
entirely and yet be entirely possessed.
You say no, your face tight with pain, tears
burning your eyes, hands clenching the steering wheel.
I believe you. We drive hundreds of miles
across deserts sculpted by wind and story,
and I learn distance from my hand to your thigh,
your mouth to my mouth, the curve of a collar
along a warm, smooth neck.
You grin as if no one has ever seen you thus:
naked, savage, happy.
That is the beginning of yes.

Ghosts are everywhere.
We hear them singing on that mountain in Ute country,
the cries of your flute pleasuring old spirits.
Like those people whose land we cross,
we don’t live by lines drawn on paper.
Instead, we mark the waterfall of shy kisses,
a dry windy town where we exchange secrets in whispers,
the high cliff hollow that shelters us
on the edge of the Uinta forest.
Wildflowers bend beneath our bodies,
cup the trembling weight of touch.
We wander for awhile in a place vast enough
to contain all possibilities.

After twelve hundred miles together
we enter green forest thick along a fearless river.
This dense topography we can’t see through,
can’t find the horizon to judge distances
or the arc of the sun to know east from west.
There at last you clasp my hand, guide it
to a place beyond maps,
no universe I have ever known.
It is a raw landscape; we are the sojourners
overcome by the perilous shock of arrival.
We stop the car, walk by the river,
clumsy, frightened by desire. I wish
for more than body or soul can bear.

Sweet, these are the maps we made together,
territories we foolishly vowed to own.
Here, the place we wandered off the map,
moved deep into a land without scars
where every direction took us home
but no place could give us shelter.
I don’t know how to survive awakening
in a woman’s body with a child’s
broken heart. I fall on my knees, our love
a bare stone on the windowsill between us.
How can I learn this trick, will your body
back to the other side of my skin? Help me
translate loss the way this land does—
flood, earthquake, landslide—
terrible, and alive.
Miranda, Deborah A. (Ohlone-Costanoan Esselen/Chumash). “Old Territory. New Maps.” from The Zen of La Llorona. Copyright © 2005 by Deborah A. Miranda.