Saturday, July 3, 2010

Story Two: "A Day....."    (For my Ali)

He leaned back against the car and savored a moment of peace as the dawn light burned through the mist revealing a clear, blue, summer sky. Sun splashed across the yard and the dew settled like a blanket of tiny diamonds over the striving grass.

How could it be?

The little family had been up for some time, bathed, dressed and ready for the two hour drive into Boston’s Dana Farber Cancer Institute. Seven year old Eleanor wrapped in her toastiest blanket, sat on the big leather reading chair in the den and looked up from her book as her Dad stepped through the door from the driveway.

A shiver coursed through his body, anticipating the day ahead.

“Is it cold out Dad”?

“A little cool for August, Eleanor…. but I’m warming the car”.

He knelt before his little girl and tucked the blanket close around her thinning frame, leaning in to kiss the translucent skin on the top of her head.


Her Mom smiling hard quick stepped from the kitchen, a glass of orange juice in one hand and a blue beret in the other.

“I brushed off your hat in case you want to wear it into Boston this morning."

“Dad, will you hold my book?”

Eleanor handed him a paperback with a dog on the cover, and reached for the hat in her Mom’s outstretched hand.

Mom always asked, but Eleanor wore the little blue hat all the time now, indoors and out. This time she was more aware of the staring faces.

She was four when she first endured the effects of chemotherapy. Then, as her long, dark curls fell away she was more curious than concerned, believing, as Mom explained, - the medicine made her hair fall out but it would grow back just as full and long when she was better.. - Until it grew back she was so busy with friends, and grandparents and cousins visiting that she didn’t think much about it.

This time, almost four years later, she went back to school suddenly bald and the way the kids stared made her feel lonely. In the mirror that night she studied the fine, blue veins marking the top of her head like the lines on the classroom wall map and decided right there she would never again leave home without her hat..

Eleanor woke easily to her Mom’s voice whispering, “We’re here Sweetie. Dad’s going to help us from the car.”

She was warm, she realized, except for her hands, which never felt warm anymore. Her eyes came into focus as she became aware that she had been wrapped like a cocoon in her favorite quilt. She had barely moved from the time they pulled out of the driveway at home.

Dad leaned into the rear passenger door, smiling at her attempt to look wide awake. He lifted her easily from her Mom’s lap and held her while Mom wearily exited the back seat and gathered a bag of games, books, her pink I Pod, and a small overnight satchel just in case.

At the entrance they paused before the tall windows, Eleanor still in her Dad’s arms her Mom laden with bags, spectators themselves for a moment. They watched as Nurses and Doctors moved deliberately, crisscrossing the lobby, in and around the kids being wheeled or carried by anxiously determined Moms and Dads. Nobody stared, nor did they avoid eye contact. A touch of a smile or a slight nod, the only signs of the unspoken sharing that occurred in this place.

Finally,with a collective breath and looking straight ahead, they went through the big doors to join the marathon within. Here, at least, there was hope.

Friday, April 23, 2010

The Essential Struggle

I'm sixty-two years old and an eight year survivor of multiple myeloma. It's difficult to gain perspective on  the range of feelings, fear mixed with wonder, that follows one's being diagnosed with cancer. Like most I consider the inevitable, thoughts that strike suddenly, randomly, at any time of night or day.
Thanks for looking in:

Living with cancer is overwhelming at times. There is no point in self pity but fatigue, psychological and physical, is a great and destructive weight on the will.

The exigencies of the treatment process steal time from everyday obligations, which continue with the intensity, complexity and unrelenting expectation that have always been. The need to be at work is  unrelated to career advancement or a bigger bonus. Keeping the job, no matter what it takes to be in early and consistently, is critical as a way to maintain the insurance that pays for the expensive treatment of advancing cancer. Medical appointments take time from work so one sacrifices vacation time to avoid becoming an afterthought to management.

The work around the house must get done; the dogs walked, tax documents organized for the accountant, the kids helped with homework, and the trash taken out. Chunks of time for treatments like radiation and chemo therapy, blood tests, bone marrow biopsies, drug infusion, and for some, major procedures like a stem cell transplant must be normalized to the schedule of life.

Diminished family time forces decisions like retirement from coaching kids’ soccer or quashing a formalized date night with a significant other. Private time is over but for the brief stretch of time between hitting the pillow at bedtime, and the 3 a.m., adrenalin, jacked awakening to a cacophony of dreamed voices shouting mad, clamorous demands.

Comes the dawn, you throw back the warm covers and drive off the phalanx of importunate obligations, rising resolutely to meet each new day. Awareness exists with every conversation, however insignificant it might seem, that one’s being is visible in other eyes, a recognition of a distinct, vibrant presence.

From time to time there happens a moment, alone in the elevator at the close of the business day perhaps, or when sitting apart in the crowded waiting room of the Dana Farber Clinic. Lonely thoughts go to those you love and worry for; those who bring joy to your life and at the same time rely on hearing your voice, responding to the emotional and intellectual significance of that unique sound in their lives.

The anticipation of a stunningly abrupt end to this living vibration and the inexorable fading of your presence from the minds of loved ones, the absolute extinguishing of one’s voice for all time, are terrifying to contemplate as the time draws near. Thus the desperate fight to live for one more day, one more hour or one more breath, a refusal to submit to the dissolution and dispersion of 'you', into the black void of the universe.