Tag: Cancer

A Morose Echo

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A doctor from Downeytown, Pennsylvania, called me last week to talk about my 53-year-old brother Jimmy, a mentally retarded adult who lives there in a group home.

Jimmy, he explained, had been on a diet and lost 15 pounds. But the rapid weight loss was sudden, not normal. And the physician observed that my brother was clingy, hanging on to people close to him, and he seemed weak and vulnerable.

But nobody knew for sure because Jimmy cannot speak in complete sentences. He is neurologically impaired and has no more articulation than a two-year-old.

After some tests it was determined Jimmy may have cancer in his abdomen and possibly in his seventh rib. A CAT scan and an evaluation with an oncologist is scheduled “to determine the source of the cancer,” a nurse later explained.

There was, in this call, a morose echo, a continuum of a family story that went silent after my mother died of lung cancer on September 1, 2014.

The description of Jimmy, holding on, grabbing someone’s arm, sensing, without understanding, that something was not quite right, reminded me of our father, who succumbed to a fatal brain illness in 2009 that first struck him when he lost his balance in 2005.

There again was that morose echo, a recollection of key people in my family: my father, my mother, and now my middle brother, struck by sickness, but first assaulted by something pernicious and internal whose development would grow to overtake their bodies and later kill them.

I had listened carefully to the doctor and took notes as he spoke, a crutch of rationality to ward off emotion.

I sat in my late morning living room in Van Nuys, where no matter the life event, the aura is cheery, the mood bright, the surfaces clean, vacuumed, and dusted.

But then the doctor asked me about my family history, exactly what illnesses my parents had, and how they died.

His medical inquiries, combined with Jimmy’s new cancer prognosis forced me to cry hard, the way I did when I knew my father was fatally ill, the way I did a few weeks before my mother died, when the tumor on her neck grew to the size of a golf ball.

I was sobbing, alone, with nobody to comfort me. My parents, who would have been devastated by the news about Jimmy, were dead.

Perhaps that was a good thing.

After I hung up I blew my nose and drank a couple glasses of cold water, exhausted at 11:30am.

Jimmy and Me, 1992.

To speak of Jimmy now, a brother whom I haven’t seen for many years, and carry in me some measure of guilt and helplessness concerning him, the news is bitter and factual and true.

He is my missing brother, yet I know exactly where he is.

Jimmy lived in our house from 1964 to 1978, and then he was removed, like a cancer, never to be mentioned by name, only spoken of by the city or state in which he was institutionalized, first in Milwaukee and then, later, Pennsylvania.

“Milwaukee is on the phone,” was how we handed the phone to my mother when Jimmy’s caregivers called.

My father arranged the details of Jimmy’s transfer and care. He worked with pipe in hand, composing notes on yellow legal pads in his artful script. He wrote succinctly typewritten letters, arranging with the State of Illinois and later the State of New Jersey to pay for his son’s care and housing.

In 1979, we moved from Chicago to New Jersey.

Every other year or so, my parents would steel themselves and see Jimmy. They drove a few hours from home in their brown Delta 88 sedan, down to Eastern Pennsylvania, getting lost in the hills and turnpikes, finally proceeding up that wooded, semi-circled, asphalt driveway to enter a wooden building where the residents sat all day in a dark room watching television.

Walking in trepidation, my father would feign self-assurance and place his hand on my mother’s shoulder as their retarded son emerged from the room with the flickering blue light.

One of the caregivers would bring Jimmy over, and he would jump up and down and put his hands on my mother’s face and utter, “Mom! Mom!” Each short reunion with him bore the enormity of a long tragedy.

They went to eat lunch. They went to the park. They tossed a football in the field. They went to the mall and bought him new shoes.

Those long afternoons with Jimmy were spent watching the clouds pass by, for in his presence, time was rendered meaningless, without markers or milestones.

Then they took him back to his facility.

And after a tiring, draining, sad day, both of my parents would cry in the car. They knew there was no end to The Jimmy Story, except in death, for his brain impairment rendered him a child for life. There would be no Jimmy graduation, no Jimmy wedding, no Jimmy career, no Jimmy grandchildren.

The first way they dealt with their sick child was to do everything they could to save him, to find him treatment, to keep him in our family. They exhausted their savings of $10,000 (2017 dollars=$75,000).

In Chicago, in the late 1960s, there was little treatment for autistic and retarded children. Some mental health experts blamed maternal “lack of affection” for Jimmy’s condition.

He broke dishes, he screamed uncontrollably, he bit his arm, he started fires, he pulled all the railings out of the banister, he ran away and hid in neighbors’ backyards, he jumped out of the backseat of the convertible and my mother had to chase him before he leapt into the murky waters of the North Shore Sanitary Canal.

When he behaved he still had to be watched all the time. He could never be left alone.

The second step was to save our family by taking him out of the house. And then trying, in their daily lives, to place his existence in a locked, hardened storage unit of the mind, where his screams, and their pain, were stored and quarantined.

Last week the dormant and dried underbrush of memory was set on fire again, and I was trapped, with nowhere to run, in that family melodrama produced and directed by fate.

Postscript: Jimmy’s doctor called after the latest CATscan. He reported this may not be cancer, but what it is has yet to be determined.

 

 

 

 

 

 

The Retraction From Life

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Weaker, yet still alive, still able to speak, Louise M. Hurvitz was in her wheelchair, in the sunshine near the glistening Marina boats, when she told me she wanted to eat a steak.

That was on Monday, August 18th. She ate a hamburger that night, and a slice of pizza on Tuesday night. She was 8 months into her Stage 4 lung and bone cancer.

Nurse Linda said she was looking great.

Then on Wednesday she began to call for her sister “Millie”. She was up all night, and then asleep all day by morphine and Lorazepam. In periods of wakefulness, her glazed eyes no longer looked at me, but out into nothing.

She was no longer able to speak. I went every other day to see her, knowing she was entering death.

A blue booklet left by hospice, Gone From My Sight, explained how the bedridden dying walked out of life. We noted her symptoms mirrored in the book.

The late afternoon sun was bright in her bedroom on Friday, August 22nd. She screamed that her head hurt, her back hurt, everything hurt. She wanted me to shut all the drapes. I abided and put the room in darkness. Foreshadowing.

She was in her last days. Nurse Bertha said if she ate she would stay alive. And then on Friday, August 29th, Labor Day weekend, hospice came and said, “no more food or water”. She was given 72 hours.

All weekend were the pleasures of Los Angeles, the beach and the beer, the walks along Abbot Kinney, the barbecues, I partook of some haunted by an upcoming phone call.

And then on Sunday, August 31st at 11:30 PM we were called and told she was breathing irregularly. We got in the car and rushed down to the apartment. My brother and sister-in-law were at her bedside. A nurse helplessly held the nasal end of the oxygen tube against her open mouth.

She was gray faced.

She was gasping for breath.

I replaced the nasal oxygen with a whole nose/mouth mask. Nurse Linda arrived. The hospice nurse came. It was about 2am and we did not know how long she would live. Exhausted we left. And an hour later I was in bed when my brother called.

“I hate to tell you this but Mom has passed.”

All the fighting for her life, all the medications, the food, the physical therapy, the chemotherapy, the consultations with UCLA medical doctors, the cat scans and the other radiology, the organic smoothies packed with nutrients; all the equipment, the oxygen, the ointments; everything done to keep her alive and going. Done.

Her body was pronounced dead by a doctor. The cremation company came to the apartment to wrap up and remove her.

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We held a home service for her, almost a week later, on Saturday, September 5th.

Andreas Samson, my friend who writes Up in the Valley, attended and wrote a touching description of the bittersweet “party”.

There was food and drink, old photos on the flat screen television, a Spotify soundtrack of her beloved music (Frank Sinatra, the Fifth Dimension, Herb Alpert). Relatives who had never seen her sick, showed up to pay their respects.

And her life was presented selectively, with an emphasis on the young, beautiful, vivacious, pranking, intelligent, subversive sorority girl and network executive.

She, who died at 80, mothered a retarded boy, took care of an epileptic and ill husband, worried and fretted over children, finances, nightly meals, laundry and cleaning, her daily travails were wiped away or spoken of in one sentence salutes at our remembrance.

For 52 years, I had grown up and grown old with her. I knew her love and her craziness, her exasperating circular questions, her sparkling memory for names, faces, and events.

She, who drank vodka and grapefruit juice, and later switched to red wine, was probably an alcoholic. She was full of shame over events she had no power over, castigating and punishing herself.

But she fought hard to protect and to nurture, and daring to venture out of Lincolnwood, IL, moving to suburban NJ where she set up a new life with her family at 47, exploring Manhattan, New England and the East Coast with the curiosity and passion of a young woman starting out life.

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She sold airplanes with a male friend, a pilot and airplane broker who lead a life outside of norms, a man who was later convicted of stealing money from his customers. He flew Louise and our family, often, to Albany, Boston, Martha’s Vineyard, Manahawkin Airport, Miami, East Hampton, Nantucket, Block Island, all around the Eastern Seaboard. American life was seen from 8,000 feet, little houses and little lives across the vast expanse.

She went into the city to see plays with my father, to walk neighborhoods, to buy groceries at Fairway, see exhibitions at the Metropolitan, attend concerts and events at Lincoln Center.

She read the NY Times and Bergen Record voraciously, keeping herself informed on culture and politics. The papers piled up in wet and musty mountains stacked in the garage.

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She loved her new home in the woods, a place where the windows were always open and the rooms smelled of rain and leaves and florid humidity. In the spring, summer and early fall, the back deck, suspended on the second story of the house, was her outdoor space, a place of reading, eating, entertaining and midnight conversations by candlelight.

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She lost my father after his long and agonizing brain disease, an illness that took 4 years to progress, rendering him an invalid.

But after he died, in her apartment in the Marina, she became a devoted grandmother and somehow earned the respect and awe of children who had once only seen sadness and burden in her exhausted eyes.

She was valiant onto the end; never giving into death, never acknowledging that life was less than the entirety. An iron dome of denial was her shield.

She was more than she ever admitted to being. She was magnificent in her life force, in her refusal to die, in her love for life.

 

 

 

 

Prayers and Pharmaceuticals.

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What day was it on the calendar?

I did not know.

I only know I was speaking with my mother, pushing her along in the wheelchair along the Marina path. The sky was bright, the boats were anchored along the dock, she said she was hungry and wanted a steak.

It was last Monday, August 18th and Linda brought her a burger from In N’ Out. My mother said it was delicious.

The next night she asked for pizza.

The steroids that she had gone back on seemed to be making her hungrier, putting food for life back into the body of a woman in Stage 4 cancer.

Linda came and said mother is looking better. Vital signs were good. Blood pressure 102/59, pulse 62, temperature 98.6.

 

 

I was back on Thursday, August 21st.

Caregiver Bertha, a Guatemalan woman who is a fireball of energy and love, cooking up soups, cleaning windows, massaging oil into my mother, rolling her out of bed into the wheelchair, said my mother had been up all night screaming, “Help! Help! Help!”

I blamed the steroids. They were keeping her up.

My mother told me she was dying. She said this was it.

Bertha laughed and said “Miss Lou you are not dying. Your face has color. This is not death!”

My mother said that Anisha was in the other room. I said Anisha is gone. She said she saw her. She said it over and over again. We were conversing, but the conversation was repetition. I was speaking to her, as I had for the last half century, but the words were going into a mind going into death.

My mother said I was sick. I told her I was not. “Why are you sick?” she asked. She said something about a concussion.

 

 

On Friday, my sister-in-law Pri visited and spoke with my mother. Later I came over and found my mother asleep. When she awoke, her eyes were watery, and she asked for her sister Millie. “Millie, Millie, Millie, Millie, Millie…” And I dialed the phone, 90-year-old Millie in Chicago answered, and on speaker she spoke to my mother, “Lou I love you. You are my favorite sister.”

The nurse from Skirball came, cheery, on her last call of the day, before she went off work for the weekend. As she had, all along, the hospice nurse offered empathy and most of all, pharmaceuticals. She had no explanation for my mother’s descent into half-life. She wanted to make sure my mother was “comfortable” in her “transition”, the words as soft and false and phony and amorphous as the hospice treatment, a kind of strange medicine offering prayers from amateur rabbis, talk therapy from retired therapists, and weekly visits from drug dispensing nurses pouring morphine and Lorazepam into the mouths of the dying.

My mother asked me to close the drapes in the room. She said the light was blinding her. She said her head hurt. She said she ached all over. I pulled the drapes shut, and we sat in the dark, which felt ominous, a portent of death, shutting out light.

 

On Saturday, August 23rd, I went down to the apartment to welcome a new caregiver, Marta, who would be there in the last days of my mother’s life. Bertha stayed, until 3 O’Clock, training the new woman.

A blonde, middle-aged female rabbi came to the apartment, ludicrously dressed, to my eyes, in a doily lace yarmulke, offering exuberant compliments about the 8th floor view. She sat down next to my mother and asked if she was ready to go. She said it was Ok to go. My mother was now dead to spirit, but alive, incoherent, the silly, improvised, bedside portable Judaism lite blew over her like the breeze.

The rabbi left, her utterances to the all-mighty were no match for the wonders and miracles of morphine. True peace and acceptance were swallowed every four hours.

“I give your mother La Morfina. She sleep well,” Bertha said.

 La Morfina.

The patron saint of cancer.

And I returned on Sunday, August 24, 2014 to her apartment. The front door was open and a wind blew through the living room, rustling the newspapers and sucking the drapes into the open sliding doors.

Danny and I sat next to her, one on each side of her bed.

“Do you know who I am?” Danny asked.

“Danny,” she said.

“Good!” he said.

She said my name and then fell back into her world. And whatever she said next had no meaning. They were only words, coming out, weakly.

“Clicker, clicker, clicker…” referring to the TV remote.

 

 

 

 

 

 

 

 

Denial.

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“She was screaming at night about her arm, her chest, her leg,” Anisha, a caregiver, said.

“She hardly slept.”

Anisha was speaking about my mother,now in Stage 4 cancer, confined to a bed for the last eight months.

Later on, when I went into her room, my mother said she had slept well the night before. “There is nothing wrong with me,” she said.

She was breathing on oxygen, then she told us to take it off. She has refused most pain medication, reluctantly asking only for sleeping pills.

 

I took her out on Sunday, in her wheelchair, and we ventured along the Marina. By chance, we happened to come to a dock where a water taxi was taking passengers. I wheeled her down and we rode around the harbor for a dollar.

A hospice nurse visited on Sunday night and found nothing “wrong”, only anxiety.

On Monday, another nurse came and told me later my mother’s feet were showing signs of “mottling” an impending indicator of death.

 

On Tuesday, I was back down at her apartment. A social worker was talking to my mother. Anisha told me that my mother had not slept the night before, and had talked of her future fear and past regret. “You should give her some hope for the afterlife,” Anisha said to me, an atheist.

When the social worker left, I went back into the bedroom. My mother was combative, annoyed. “You and your brother are driving me crazy with this system! How would you like to be under a microscope?”

I asked her if she had slept well. She said of course. She slept fine.

Again we went out to roam around the Marina. It got windy and she asked to go back inside. “I want a steak,” she said. She had not eaten more than liquids for at least a week. I corrected her and said she meant hamburger.

And then after I left the apartment, after I had two glasses of wine at a bar, I walked around Venice, shooting pictures along the canals, and then wandered back to my car.

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The phone rang as I drove east on Washington. It was Anisha. She wanted to assure me that my mother had slept well last night. When she had called out, it was only in a dream.

“I told him,” Anisha said to my mother before she hung up the phone.

The Whirlpool.

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Cancer, homecare, medicines, hospice, chemo, wheelchair, bone cancer, lung cancer, cough syrup, Oxycontin, Oxycodone, Remeron, Sinemet, Morphine, adult diapers, sponge baths, bowel movements, stool softeners, rehab, oncologist, nurse, radiation, constipation, oxygen, Stage Four, terminal, incurable, cremation.

For seven months I’ve swum in a whirlpool of ugly words.

Yesterday, again, I went down to see my mom at her apartment. One homecare worker was leaving, another arriving. I came in with four bags of groceries and went back to the bedroom.

She was in bed.

The TV was on. I think it was “The View”.

I sat down on the carpet in front of her bed, the only way she can see me, straight ahead.

Bertha came in with matzo ball soup. I ate two bowls. She fed my mom a few bites.

In the afternoon, I took my mom for a “walk” in her wheelchair.

I picked her up, limp and frail, and moved her from the horizontal position on the bed into her chair. Seated now, I put the pedals on, guiding her weak legs and purple feet into position over the pads.

I squeezed a pillow behind her curved back, and pulled her arms up into a zippered sweatshirt. I draped and folded a blue terry cloth blanket across her lap. Sunglasses went over her eyes, a hoodie atop her head.

I pushed the steel chair and the woman in it out of the bedroom, past the front door of the apartment, into the elevator riding down, through the dark parking garage. And out into the brilliant sun, out into the fresh and salty wind.

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A key opened the locked steel gate along the long dock where cruisers, sailboats and yachts were docked. Between the boats and the buildings, that’s where we went.

The hi-rise, swinging sixties apartments along the Marina, with their curved balconies, they were made for tanned stewardesses, white shirted pilots, Irish-American boat captains, cocktails on the sea, cigarettes and sex, lovemaking and laughter.

Architects and developers back then, like now, were drunk on youth, novelty and modernity.

Nobody was supposed to get old. Nobody was meant to come here disabled, wrapped in blankets, pushed along the harbor watching other people have fun. Wheels were the Red’68 Bonneville Convertible- not the walker and the wheelchair.

We walked past Killer Shrimp and crossed the asphalt to the other side where they were renting paddleboats and paddle boards. I pushed my mother to the end of a dock inside the lakelike Mother’s Beach.

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On the dock, my mother in her chair, me pushing her almost to the edge, a sinister thought entered my mind.

I thought of Technicolor Gene Tierney in “Leave Her to Heaven”(1944) where she let a crippled boy, her husband’s brother, drown in a cold lake.

If I had the evil gene of Gene I might act on hard and cruel impulse and push mom into the water, an act of mercy perhaps, saving her from the eventuality of dying in bed from fluid in her lungs or some other unforeseen killer.

Instead, I pulled back and fastened her brakes. I took out my phone and photographed my living mother motionless on the ocean dock.

 

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Hours later I was at the Whole Foods bar with Travis, drinking a Scotch Ale, listening to a ravishing real estate agent, talk about her teen son’s abusing father, and her fight to cure her child.

Pretty, like the actress Susan Lucci, she grew up in Venice and talked as if she had sold many millions of dollars of houses in the new rich bohemia.

My buddy, much younger, broader-shouldered, deeper-voiced and all man, listened to her as she massaged him with her eyes.

She showed us pin-up shots of her on the Samsung screen, sexy images that made me ask, intoxicated as I was, what exactly she was selling.

Around us in Whole Foods, was the whirlpool of beauty and freaks that swirls in the aisles among the organic fruits and vegetables: tall women, muscular men, old women in running shorts; beards, tattoos and pegged pants, rolled cuffs, razor cuts, canvas bags, kale and 90% cocoa chocolate bars.

Travis and the real estate agent left, going their separate ways, but I stayed longer, waiting for the beer to wear off. I amused myself by photographing the green-eyed young clerk Joey.

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I am not an alcoholic, but I now can see, with ease, the attraction of numbing pain, blocking sadness, loosening tension. I will willingly submit to its temporal benefits and consoling pleasures.

As I did last night for a few hours after dusk.

 

 

One day soon, I will come down here to Venice and Marina Del Ray.

And my mother will be gone.

And I will think of these months, the ones that came about in 2014, where sickness and impending death arrived without warning.

And I will remember the endless summer of insipid profundity, the strange and incongruous times of illness and fun, the months on watch seeing her decline in Marina Del Rey.

Who dares to die in a place where pleasure pushes along unimpeded on bike, in swimming pools, on jogging paths, on tennis courts, at volleyball games?

 

 

 

 

 

 

The Art World

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Image

6/4/14

Yesterday I went, as I have for almost six months, to visit my Mom, ill with cancer, now in hospice, at her apartment in the Marina.

She can’t walk now, so she is either in bed, or lifted onto a chair, wheeled over and pushed out, into the sun, or more often, up to the TV, where many hours of daytime talk shows play without end.

She asked me to sit down, next to her.

She said there was an explosion of news about cancer cures and people whose terminal illness had been cured through “miraculous” immunotherapies. Would I look into this she asked?

Told that she was Stage 4, incurable, sick with bone and lung cancer, she has accepted the news, but fought it through inquiry and denial. She told me she was coughing more because she had caught a cold.

Loretta, her live-in caregiver, brought my mother into the living room, to vacuum the bedroom. The bedside phone rang, and Loretta handed me a call from Direct TV.

I answered in the voice of old gruff Junior Soprano. I told the woman we were retired people, uninterested in her offer, and hung up. My mother laughed, hoarsely, and said that she loved that voice I used.

She is still fully there, her mental capacity undimmed, even as life seeps out and the monstrosity of dying cells takes over.

I made a lunch of grilled salmon and roasted garlic, rice, fruit salad, plain yogurt, and hot green tea. If healthy eating were enough to insure health this meal might defeat cancer.

After lunch, Loretta wrapped my Mom up. And I pushed Mom in the wheelchair down to vote in the Marina City Club, where more old people manned tables and passed over registration books, which my mother let me sign.

I stood next to her and fed the flimsy two-holed ballot into its plastic holder, and began to read the names of politicians to my mother, who only knew one, Governor Jerry Brown. We read each page: names of candidates and parties running for offices; all enigmas.

Is an ignorant voter more dangerous than an intelligent one who abstains from voting?

We turned the ballot back in, having punched only one hole and we were given stickers that read: “I have voted”.

I took her to the park across Admiralty Way, a running and biking path between the speeding cars and the tall buildings.

Behind the Ralph’s parking lot on Lincoln, there was a small opening in a fence, and I walked down to see if we could get through it. I judged that we could, and I pushed my mother in her chair over the asphalt onto the bark’s decline, through the fence hole and past the dumpster into the parking lot.

She hadn’t been inside a store in six months, and now, where she had once driven herself and walked in, she sat as she was pushed past edibles.

We picked up extra virgin olive oil, aluminum foil and wheeled back to the Marina City Club.

 

 

I seem not to cry much when I visit, acclimated am I to the new grimness.

I became, in the last six months, a high-ranking soldier: inspecting the medicines, giving orders to the homecare workers, pulling in supplies, taking over financial, legal and medical decisions, signing papers, managing staff and bringing drugs to the ill and dying, issuing directives for non-resuscitation and cremation.

I had no training, only a sense of duty, obligation and rightness.

 

When I left yesterday, in the late afternoon, I kissed my mother on the cheek and held her hand, and wandered out into the wind propelled in blank distraction.

From this time afterward I existed in a suspended and stoned state of mind, up on Abbot Kinney drinking wine, and later, intoxicated, walking up alleys and behind buildings camera in hand, anesthetized and numbed.

A woman sitting on the sidewalk, not homeless just sad, stopped me and asked me about my camera. Tina introduced herself. She told me her husband was divorcing her and taking custody of their two children. She asked if, one day, I might want to take photos of her and the children. She told me I should volunteer at Venice Arts and teach kids photography.

I was on wine so I was kind. I listened and gave her my card.

I think I will be like this for a while, even after my mother dies.

Peace will settle on me like a healed burn.