Last Act of Love

I knew the problem was serious when Greg could not muster the energy to get himself to the ice cream shop at the end of the street. This daily expedition had become his afternoon treat to cool off from the summer heat. We were in Australia to spend Christmas with our daughter. The sun was fierce, and I tried to tell myself that the heat could be the reason, but when Greg slumped over somebody’s white picket fence half-way to the shop, with his head drooping and his eyes not meeting mine, a spasm of cold fear slithered under my ribcage. Of course, I knew Greg was sixteen years older than me and realized he would, probably, die before me. But not yet, please, not yet, I pleaded with an unhearing deity.

After that first fright on the neighbor’s fence in the Sydney street, Greg’s exhaustion became more profound each day. Soon he was not able to climb a dozen steps from his temporary office in the garden into the house without frequent stops. I nagged until he phoned for an appointment with his heart doctor back home in San Diego and we accelerated our departure from Sydney to be there on time.

On the long, daunting flight back to the States, I had plenty of time to worry. He was usually a fountain of energy and left me scurrying in his wake. I had time on that endless journey to remember how I had worried about him dying since we met. I didn’t think this was normal, but Greg had been such an extraordinary gift at a time in life when the chance of such an offering is usually over. I was forty-nine years old when we met. It was an attraction of opposites. Greg thrived on confrontation; I abhorred it, I was staid and rulebound. Greg was reckless and adventurous. He offered me freedom from myself.

We came to adore each other. People remarked on our closeness when we were together in a room and how our eyes followed the other with enormous tenderness. Greg taught me to live life instead of working (and drinking) myself to death. He told me I took myself too seriously and showed me wonderful places in the world (and many not so pleasant.) It was a heady ride, and I was not ready to let go.

Immediately upon our return to California, we reported the exhaustion and the nagging pain in his back to his heart specialist, Doctor Clive Trenton, at Scripps Green Hospital in La Jolla. There was the talk of by-pass surgery because Greg already had seven stents in his arteries. Clive said he would investigate first with an angiogram. Greg was admitted the night before the procedure, and on the day of the surgery, I sat in the family waiting room by myself. The atmosphere was stiff with people’s anxiety, exacerbated by my own. People talked in hushed whispers, paged magazines and slurped lurid colored drinks through straws. Coffee burbled in an urn. I gazed, unseeing, at my book.

A woman I recognized as Clive’s receptionist, came in and asked me to accompany her to another room. Clive wanted to see me alone. Terror engulfed me. I followed her down endless corridors, the air stiff with disinfectant. After what seemed like twenty minutes that was probably seven, she showed me into a large room with nobody in it. There were chairs and small tables down each side of the room.

“Wait here,” she said. “I will go and tell him you’re ready.”

Clive was always late for appointments, but he was a heart surgeon, so you cut him slack. You never knew when you, or a loved one, might need that extra attention. The avocado-colored walls and cream popcorn on the ceiling did nothing to encourage the visitor towards optimism. I plucked at my cuticles in sporadic gestures. I considered sucking my thumb, which I had not done for forty years. Alternatively, a treble Scotch would have been welcome.

Clive came into the room muttering apologies for keeping me waiting. I got up and kissed his cheek. We were old comrades in trying to get Greg to look after himself. Clive was a tall, thin man and reminded me of a bird with a long nose and neck. His posture resembled a heron, but the heavy pebble of his glasses made his eyes pop out rather like an ostrich.

“Sit down, Mary, sit down.”

“Please put me out of my misery, Clive. What’s the news on Greg?”

Taking my hand in his bony one, which only added to my terror, he told me that he had put another stent in Greg’s heart, which had been ninety percent occluded, but that he didn’t think that was the solution to his other symptoms. Something else was going on, but he didn’t know what. He suggested we go down the hall to the kidney doctor’s office for some tests. He had secured an immediate appointment for Greg who was in the recovery room. I could join him there. When I found him, he was busy getting dressed. He was out of sorts.

“Come on, let’s get out of here,” he said, taking my hand and pulling me towards the exit.

“Not so fast. Clive wants us to get some blood tests done in the nephrology department.”

“Must I?” Greg said.

“You must,” I answered.

Greg and I trudged along some more corridors into another waiting room. Blood and urine samples were taken then Greg was released to go home and wait for the results.

* * *

The next day, I was at the grocery store when the call from the hospital came to tell Greg that his blood tests results were so bad that he should put his affairs in order and return to the clinic immediately. Greg drove himself to the hospital and called me from there.

“You had better get here as soon as you can,” he said. “The news is not good.”

Early that evening, cancer scuttled into our lives. When I reached the hospital, Greg had already been referred to and seen by an oncologist who had pronounced a diagnosis of an aggressive stage four cancer of the blood known as Burkitt’s Lymphoma. Greg had arranged for the oncologist to return to his room after his rounds so that he could explain the prognosis to me.

“I want to move in here with you,” I told Greg. “I’ll go home and get some things for both of us and return as soon as I can. Stall the oncologist until I get back.”

But nothing was standing still. While I was gone, a lumbar puncture was started. On my return to the hospital, I had to track Greg’s whereabouts to the fifth floor. He was in a small cubicle, tucked away inside of the ward, naked but for the draping of discreet covers. A female doctor wielded a fearsome-sized needle. She looked very young and, each time she moved, her lush, auburn hair swung violently around her pretty face. I reminded myself that, now I was sixty-three, everybody looked as if they had just been born. I sat by Greg’s side, stroking his back as the syringe sank into the base of his spine. Greg took a sharp inhalation of breath and squirmed in anguish.

“The worst is over now,” the doctor said in a cheery tone.

I wanted to slap her. I was surprised at my strong reaction; she was probably trying to be kind, but I found the remark condescending.

Returning to Greg’s room in a wheelchair, we were met there by a squat man with greasy hair. He had heavy black-framed glasses on his small nose; he looked like a querulous owl on the hunt. He and death were after my husband. He introduced himself as Doctor Jerome Stubbs. I sat and listened to this humorless, unempathetic man explain how sick Greg was. If left alone, the disease would kill him in six to twelve weeks. The plan was to start chemo the next day.

“Will it hurt?” Greg asked.

“We can make sure you remain comfortable,” Dr. Stubbs answered.

He explained that the disease had been hard to diagnose because Greg had a strain of lymphoma usually seen in boys under fifteen on the West coast of Africa. It manifested itself through the growth of a large tumor in the neck. Greg didn’t have any visible lumps. He went on to tell us that it was the first time the team of oncologists at the hospital had seen this variety of cancer and provided a rare educational opportunity for the staff and the students.

“After all, we are primarily a teaching hospital,” he added.

He was almost licking his lips in anticipation; I loathed him on the spot, my rigid English upbringing instilled veneration of doctors. They were an austere breed who managed life and death and should be respected. They wore white coats to symbolize this and to set them apart from other mortals. Now I had had two bad reactions to physicians in a short space of time. Distrust probed at the edge of consciousness.

Despite all my training never to show emotion in public, I burst into terrible sobs as soon as Doctor Stubbs finished speaking. I couldn’t have restrained myself. It was all so impersonal, and now Greg’s illness would be watched and chronicled by others. Greg put his arm around my shoulder, pulled me into his body, he was comforting me, it should have been the other way around. I had feared and tried to foresee this moment, but I don’t think I could have prepared myself however hard I practiced. The news was such a shock. It would have been impossible to predict the full impact of the verdict until the doctor had pronounced his conclusion. Now it was too overwhelming to absorb. I cried and cried. I felt this pending loss as amputation of part of myself. Greg finished me, encircled me, invigorated me. Greg was life, and now he was death.

* * *

The chemotherapy began the next day. At first, Greg didn’t change into the ghastly garb of the sick: the dreaded hospital gown with the open back and exposed buttocks. He dressed each day in his usual polo shirt and slacks. I got our tech guy to set up his computer and printer in the hospital room, so he could be online, playing with the stock market as the chemo dripped into his arm. The liquid was an acidic yellow, the color of rattlesnake venom.

I spun into an efficient mode. I called our lawyer to make sure Greg’s will and trust were in order. They were not. What followed was an unseemly rush to get Greg to sign fresh pages in front of a mobile notary. We had just sold our imported wooden-door business, and the money had not been invested yet. In addition to the medical treatments, bankers came to the ward to try and sell us financial instruments that would guarantee me an income after Greg’s death. In their business suits, they looked out of place. The doctors and nurses exhorted me to stay “positive” in front of Greg, but these activities made this impossible for me.

To change my attitude, I tried to think of the treatment as a healing friend. That was a fantasy which I couldn’t sustain. By the end of the first week, large, suppurating blisters appeared on Greg’s lips and spread to his gums and tongue. He vomited continually and grasped at his stomach in the throes of cramps. He was soon in a hospital gown and lying in bed.

 

* * *

One night when I had gone to our house to get some necessary uninterrupted sleep, I came late into the ward the following morning. I was met by a hairless Greg.

“I thought I would pre-empt the inevitable,” he said, stroking his shaven pate. “Feels very clean and airy.”

I stopped dead in my tracks, and my hand went to my mouth to curtail a cry, his magnificent head of hair was gone, as well as the stubble of his beard. I had never liked his appearance when he shaved. His face without the bristle of whiskers was not the man I married. He was somebody else’s husband, whom I had seen in photos, during a previous life. He was not as handsome, nor as sophisticated; not himself as I knew and loved him.

Reality returned me to the present as Greg spiked a fever. He suddenly went puce and started to shake and babble nonsense. I called a nurse. She rang a bell, and two other nurses hurried into the room. They padded his body with icepacks like damming a flooded river; they took his temperature and the nurses conferred with each other in stage whispers. They called for the doctor. Greg soiled the sheets. And he shook. I stood on the sidelines and watched; out of my depth and petrified. The fever subsided. The nursing staff congratulated themselves. I cried some more, this time in gratitude. The bag of chemo was rolled back into the room, and the seep started again — drip, drip, drip.

* * *

Greg would not talk to me about the possibility of his death. He had a healthy denial system. He once told me that he covered hurtful memories with thick band-aids and never looked at them again. I was exactly the opposite, exposing old wounds in therapy repeatedly in the hope of blunting their impact. So, Greg and I never said goodbye. The nearest we got to it was when the abscesses in his mouth made it too painful to talk; he had looked at me deep in the eyes and mouthed: “I love you.” I was too greedy for this to be sufficient. I needed that both of us acknowledge the possibility of his death together and support each other through the process.

There was no time to probe the subject. Greg wasn’t eating, the pain in his lower back increased, his whole body hurt. Still, the young interns and the odious oncologist came every day to survey their specimen. The specialist shouted instructions at him to open his mouth so that the students could go forward to inspect it. Greg obeyed. I cringed for him, hating their tone of voice, which was so demeaning. I complained to the primary care doctor. Nothing changed.

I soon had to employ twenty-four-hour special nursing as Greg started to pull the tubes from his body. His mind wandered, his words did not make sense, his weight continued to drop. His white blood cell counts were dangerously low making him prone to infection. Blood transfusions were a constant to restore them so that the chemo could continue. A feeding tube had been brought in. All this was against what Greg and I had discussed during the last three years or so if either of us got sick. We both believed in not prolonging life for the sake of living a few months longer with no quality of life. I was a proponent of dying with dignity, and in the absence of a California law allowing voluntary euthanasia, I would have flown Greg to Switzerland where this service was available to non-residents. But that window was rapidly closing if it hadn’t already. He wouldn’t be able to travel now without a complete entourage and a private plane.

As Greg became more restless and tried to get out of bed, I asked that he be sedated. They said it could not happen because the doctors needed to be able to talk to Greg to assess his symptoms.

“I don’t care,” I said. “Sedate him.”

Was it for him or me”? I have wondered many times since. His decline was heartbreaking to watch. His eyes pleaded with me, but with no spoken request I had to interpret what he wanted. I thought I knew: deliverance. But maybe this is what I wanted: to end the agony for myself? I wanted Greg to let me off the hook and confirm that he did not want to be kept alive artificially but would rather be taken home to die as we had planned. This affirmation never came.

I requested an interview with a team of three oncologists who worked with Doctor Stubbs. I brandished my Health Care Power of Attorney and said I wanted all the tubes taken out, so I could bring Greg home to die. They all shook their heads and said it was too early to consider this. He was doing fine. This was such a blatant lie that I laughed. They scowled and muttered among themselves. I asked for a Hospice appraisal of his condition. I knew that the doctors had to agree before Hospice could visit Greg in their hospital. They refused, repeating that it was not the right time. He still had five courses of chemo to come.

My psychiatrist told me to appeal to the Ethics Committee at the hospital. I put in an application. The oncologists came and asked me why I had done this. I reiterated that I had promised Greg he would die at home.

They were adamant: “We will not sign off on you taking him out of this hospital. The file will read that it was against our advice. The responsibility will be yours alone.”

Anger stoked my courage.

“You don’t scare me,” I said. “I think you’re using my beloved husband as a petri-dish. You want to see how much chemo a man of seventy-eight, with compromised organs, can survive. Somebody in this department sees a personal award, or a research paper, at the end of this experiment. I won’t let you try out any more of your concoctions on Greg. You can find another specimen to be your lab rat.”

Their stony faces stared back at me. Threatened with the Ethics Committee complaint, the doctors agreed to an independent appraisal. It took the gentle-mannered Hospice representative less than twenty minutes to agree with my assessment of Greg’s condition. In stark terms, he told me: “He is comatose and dying. Look at how jaundiced he is. His liver is failing. See how labored his breathing is, followed by rapid inhalations that slowly decrease, and then a pause in his breathing? He is starved of oxygen. His heart and brain are failing too.”

I asked him if Hospice could arrange an ambulance, along with a nurse to attend his dying at our home. He readily agreed, and the next day we were set up in our bedroom at Fairbanks Ranch with a hospital bed and Greg inside it. I would sleep in our bed but near enough to touch him. I understood Greg was mortally ill, but I began again to feel a connection to him that the hospital routine and treatment had severed. I felt in control of what was to happen, and this made me feel empowered. I could see this process through for him.

I sat with him through the night with the Hospice nurse advising me on the deterioration of his body. His abdomen swelled as his kidneys failed to pump body fluids; his breath had become shallower. I climbed into bed with him and held his outline close into my body. They tell you that hearing is the last faculty to die, so I chose to believe them and talked to him, falling into all the old clichés.

“You can go,” I whispered. “Let go.”

I couldn’t think of anything original to say as the vice around my heart tightened and his heart tried to stop beating. He did not stir in his coma. There would be no last words for me, dying was a solitary experience for both of us. The living are only observers.

It was a quiet death at the end. Peaceful almost. No strenuous death rattle. Just what appeared to be a large sigh, the nurse checked his pulse and said, “any minute now.” Then he was dead. It was five weeks to the day since he had been admitted to the hospital. He had survived one night at home.

I was frantic with grief, exacerbated by self-doubt by making the decision, on how to end his life. Had I acted out of empathy or self-regard? It has taken me ten years to put this experience into words. Writing this, just before the tenth anniversary of Greg’s death helped me sort through my feelings. I believe I have learned to live with my decision. I trust that my actions represent my last act of love for Greg.