HOURS

HOURS
.

by Joy Krauthammer

Valentines Day 2003

Watching "The Hours" (book--Virginia Woolf's Mrs Dalloway), compelling film in theatre, starring Meryl Streep, emotionally so connected to her friend, poet (Ed Harris) stricken with AIDS, ravaged with illness, thrashing with rage, ridden with visibly scaly skin, I felt empathy and the similarity to my life. A kiss decades earlier for Streep, for me thirty-four years ago, out of love and now caring for after many years, fifteen in my story, a 56 year old man riddled with cancer, mostly not visible to the eye, suffering with more uncomfortable horrendous intense pain and complications that one can imagine.

A reflection of illness from rare metastasized esthesioneuroblastoma. Morphine and Methadone don't decrease pain. Marijuana a problem. Red itchy skin, numb legs, lack of propioception (not knowing where in space his legs and feet are so they get bruised when fumbling and falling), freezing cold hands and feet and blue toes (special clothes), ambulation problems from stroke and spinal cord compression due to tumors, sciatica nerve pinching compression, muscle spasm, no stability, wobbly with cane, sometimes walker, wheelchair, tripping, falling, crawling-back to bed. Lymphedema-drainage therapy, towers of pillows, legs swelling like an elephant, bi-lateral parathesias (burning, tingling, pins and needles), constant monstrous pain that only sleeping pills cover, (color coordinated) cushion needed to sit on, shlep about. Blood clots caught in implanted filter, blood loss, blood tubes, blood thinners, blood tests, low blood cell counts, blood transfusions, aborted surgery-"can't see through the blood". Maybe eighteen surgeries before that one. Waiting for the next.

Dehydration, constipation, hernia, bloating of belly, nausea. Loss of taste, no sense of smell since brain surgery (comatose for months) in 1988 when part of frontal lobe was removed with tumor, new brain lining failed to hold, opened again, scar along length of nose from stitches, physical depressions in forehead from opening skull, mind retention less, memory loss, over-dosing, under-dosing, drug allergic reactions, weakened chipping nails. Bandages, $1,000 tube creams, dripping fluids, pills, capsules, herbs, $100 oz. maitake mushrooms, cat's claw, shark's fin. Can not sleep on decadron, prednisone for inflammation, drug induced psychosis, wired, wild, out of control, "off the wall", dis-inhibition from drugs and brain surgery.

Embarrassing with words, rage, curses, name calling, inappropriate jokes, stories, communication, and talking out loud to self. With recognition, may later apologize. Dry mouth from radiation burned out salivary glands, swallowing difficulty, fever blisters in and out of mouth, waxy bubbling ears, hearing loss, eye floater from fall and hitting head, lacerations, mumbling, fumbling, unconscious (Breathing? Dead?), 911 middle of the nights, ambulances, revivals, stitches, infections everywhere dangerous, urinary, deadly catheter. Fast 3 am car rides over hill to LA ERs. No stopping for red lights. Hospitalized for months at a time. Six in a summer. Can't carry, lift, soups spill on floor, black 'n blue from IVs, infiltrated, non-flowing and needle shots, accupuncture too, body distortions from surgeries, sagging skin from radical neck dissection with long scars on both sides from ears to chest, multiple surgical scars on length of back, others unseen under hair, metal disk in neck to guide robotic rays, Harrington rod in scoliotic spine making tumor scan imaging difficult not allowing full vision.

Ear, sinus cavity and port-a-catheter regular cleansings, hair loss many times, bald cold head, body burning red from radiations how many times and just finished another round, and irregular shape burnt out beard. Sick from chemotherapy how many times? Refusing recommended next chemo dose. Hormones destroyed, hypo-pituitary. Scars, scares, nightmares. Missed diagnoses. X-rays misread, wrong areas radiated, destroying good organs, not timely read, nor timely delivered. CT Mylogram - body upside down dye lumbar puncture-"blockage". Treatment? Delayed - "No beds available." "Go home." "Surgeon out of town." The partner, too.

Hours on phone making appointments for consultations. Hours researching treatments. Hours on CA freeways visiting millions of doctors, healers, clinics, Western and Eastern. Hours waiting for test results. Hours in ERs waiting. Hours as inpatient at six hospitals this last summer. Hours at Physical Therapy and Occupational Therapy. Hours driving to drug stores. Hours paying bills. Hours being despondent, depressed, disoriented, disillusioned, delirious, confused, anxious, fevered, fainting, hyper, hopeful, faithful and patient, while being his own best doctor. Hours not being able to sleep. Hours and hours spent on hard tables (seven hours at a time) for MRI scanning with incessant hammering, banging noises, and out of town Radiotactic Cyber-Knife surgery. Hours and hours in constant pain, groans, moans, sighs, rarely cries. Hours and hours and no doctors' communication. Compassionate oncologist calls 10 pm.

Appetite? Enhancers and caloric fatteners.

The scene riveting for me as Streep in kitchen doubles over in the consciousness of her emotional pain, witnessing, devoted care giving, for how many years of her standing erect with a disabled loved one (LO). And once doubled over, Streep could recover quickly within minutes, stand again and go forward with plans to honor the poet. And even then, welcome his former lover, and estranged mother.

My mother-in-law on other coast has no clue. "Everything's fine, Ma." Strength, courage, faith, hope, fortitude, love. Haunted by medical memories and missed futures. In the middle of ten plus Hours surgeries, I breathe deeply, regain control over Post Traumatic Stress Disorder and recover with coping skills to be in the moment, relinguish memory and future fear, and from crumpled state, stand again to withstand more Hours.

Did he eat his food? Is he being nourished? Is she controlling or truly trying her best to encourage him to care for himself. No, he doesn't have to do what he does not want at any moment, even if he could "perform" at that moment and event. No tolerance for anything not for him. No singing allowed. My man, as with the poet, is also brilliant, as well as determined, struggling, suffering, persevering, courageous and filled with faith. He, too, was dedicated to his work, being honored as Number One for his life's work, and must have everything his way. "My Way" is only a song for me.

Choosing life over death all these years. Enough. Dayenu. "Won't jump off bridge because that's not Jewish, but maybe fall off?" Streep's poet falls out of the window in his craze for liberation-for whom? For whom has he stayed alive?

Just watching him at arm's length, threatening, nothing she can do any longer to control situation, to help, direct survival, out of her grip; finally.

Sustaining my own life of joy along with a bond of love. And the garden, the flowers, have been my sanctuary, as I was reminded seeing armloads in Streep's embrace as she prepared her way to celebrate her friend.

"The Hours'" characters' lives eerily appear to be superimposed upon each other, to reflect earlier eras, repeating lives of others, echoing from novel to movie. So, too, mine parallels this plot of relationship disconnect darkness. And caregiving. Connection.

(Wellfleet, as a place referred to in The Hours, brought back memories of land my parents owned in Cape Cod and sold thirty four years ago (superimposed on a kiss) to pay for Mom's, z'l, six month short lived cancer hospitalization (versus fifteen years now for my husband), when she was forty-nine. Loved were the Hours spent in Cape Cod.)

Healing prayers for my husband, Marcel, Menachem Elimelech ben Tova Mateal, are greatly appreciated as we find new spinal cord tumors just as radiation, once again, is finished. Appreciated are the Hours of love and Hours of care from countless medical staff, my family, friends, former medical colleagues, golf partners, spiritual community and rabbis. Marcel is a living legend. Called a "cat with nine plus lives".

Love,

Joy Krauthammer

Caregiver Angel Warrior

Post Script
Marcel, z"l, lived to go to his daughter's wonderful wedding.
 'The Comeback King' made it
and in his electric wheelchair, he danced!

Baruch Dayan HaEmet
Marcel, z’l, my husband of 31 years, died January 17, 2006, 17 Tevet, after last few years of paralysis and living in his bed 23/24 because of the lymphedema, and last three years and more surgeries of hours of the worst complex medical conditions.
G*d finally took home Marcel’s soul after six months of agonizing artificial "life-support" and eighteen years of cancer, since the first two horrific brain surgeries in June 1988.
Marcel's story was on http://www.thestatus.com/.

 At Marcel's funeral I called out, “He’s free, he’s free at last.”
I wrote on his gravestone:

FAITH ~ COURAGE ~ INDOMITABLE SPIRIT

Marcel never gave up.
He remained Number One in his challenge -- his being Survivor Warrior.

My story of Marcel's 'hours' was written in 2003,
before the last three worst suffering years of his life.
Or were they the 'worst' hours?
Marcel said, "I love you", and "Thank you".
~ ~ ~ 

Another story on Marcel
http://marcel-my-husband.blogspot.com/

PPS
HOURS represents Sephirot of Chesed, Gevurah, Tiferet, Netzach, Hod, Yesod and Malchut in Netzach / endurance with lovingkidness, strength, compassion,  determination, gratitude, bonding, devotion, and being all we can be to save a life.

~ ~ ~