After a Devastating Diagnosis, a Choice Is Made

A road less traveled.

  • Category
    Health, People
  • Written by
    Alison Clay-Duboff
  • Illustrated by
    Nikki Smith

My husband was the bravest man I’ll ever know. I will be in awe of his courage for the rest of my life. His face soft but resolute, he spoke these words: “I control the disease, or the disease controls me.” He continued with Ken-like panache: “Plus, I want to go out with a bang, not a whimper.”

On August 3, 2021, at 2 p.m., to the utter amazement of all who knew and loved him, Ken finally and permanently put an end to his disease. This is Ken’s story about a personal choice: Medical Aid in Dying, or Death with Dignity.

In June 2020, during an already weird pandemic, we were handed some bad news: Ken had non-Hodgkin’s bone marrow lymphoma. It was very rare and was found by semiannual blood tracking. The good news was the disease was extremely indolent. The oncologist assured us that treatment was not necessary and something else would eventually kill him.

As the days, weeks and months passed, Ken was having breathing issues, stomach issues. He even began stuttering. We were told emphatically none of those symptoms had anything to do with his lymphoma. Did he catch some rare parasite in the Amazon or on our trips to India? His breathing became disruptive; he had less stamina. He had a hard time catching his breath. His stomach was problematic, painful. His speech was a struggle.

We spent the next 15 months fruitlessly searching for a diagnosis. Ken endured every test filled with hope. There were painful EMGs, hundreds of blood draws, upper and lower endoscopies, infectious disease doctors, ENT scopes, CT scans, chest X-rays, MRIs and more. Nothing perceivable.

There were some strange shadows around his kidneys but no apparent cause. I had lengthy conversations with the medical practitioners. The doctors were impressed with my grasp of medicine. The feeling wasn’t mutual.

It was suggested to try Imbruvica, a specific lymphoma treatment. But it threw Ken’s heart into a flutter that required a hospital procedure and stay—a challenge during COVID-19. No more Imbruvica.

All the doctors and specialists found nothing (one told Ken the only thing wrong with him was unresolved father issues). A Waldenstrom specialist doctor with Mayo Clinic in Phoenix said, “Ken, I can’t help you. However, I know a hematologist in Minnesota at Mayo Clinic who takes on oddball cases, and I would say that you are an oddball case. Would you like a referral?”

We were in Minnesota literally within hours and were handed a death sentence 12 hours later after a few simple tests. Ken was given a diagnosis at last, however not what we hung our hopes on. It was a terminal, end-stage chronic heart failure due to AL amyloidosis. The disease being very advanced had already destroyed his heart, his gut and to some degree his speech, and there was possible neurological involvement. His life expectancy was very curt.

He insisted the doctors tell him exactly how he would die. The different scenarios were ugly. Congestive heart failure with death by suffocation, a cardiac arrhythmia that could take him out at any moment—and those were the best of the scenarios. Total devastation weighed down upon us in the bland Mayo Clinic office.

He (we) had six months or less. I watched Ken’s shoulders sink into a bottomless abyss in the floor. My heart was disintegrating as I planned out the next few hours, weeks. I knew I had a herculean undertaking ahead.

By the time we returned to Redondo Beach, our home was outfitted with grab bars, a wheelchair ramp and a walker. It was preposterous to think just one month before Ken was playing paddle tennis—albeit with breathing difficulties. We hoped Ken’s deterioration would be forgiving. But it wasn’t.

He suffered from severe orthostatic hypotension, causing him to black out, falling into my arms as I tried to get him to the floor in safety. The strong dose of Gabapentin for the infrequent electric shooting pains in his limbs gave him hallucinations. Life was more than we both could manage.

In the middle of the dark night he whispered, “Hold me.” I clung to him as if that hug could reverse time.

At the suggestion of the doctor, Ken tried two rounds of chemotherapy, but the meds were ineffectual and stole what remained of his stamina and resolve. A week in the hospital followed due to increasingly frequent blackouts. We were at a dire crossroads. Ken had stopped eating. He said he wasn’t ready to die, didn’t want feeding tubes and I.V. nourishment wasn’t an option. A painful decision was reached. Home hospice.

Within six hours of his decision, our home was consumed with all things hospice: hospital bed, “comfort kit” with morphine, Lorazepam, Haldol, laxatives, adult undergarments, bed liners, all sorts of paraphernalia. The only problem: Ken refused the hospital bed I made up with our best sheets. He was not ready emotionally for the hospital bed, even though his body was.

I felt Ken deserved some semblance of agency, so I relented (not that I had much choice) and we spent the first few nights in our marital bed. It was clearly unsustainable due to his needs, and our life quickly moved into the unrecognizable living room. I became best friends with our living room couch—my bed for the remainder of his life.

Ken was retired, and I work full time as a Realtor. He always did the marketing, the laundry, the dog walking, often dinner preparation. He was also an integral part of my business, so I barely had any domestic duties. Suddenly I had assumed all household responsibilities and more. I needed to find 24-hour caregiving. Not as simple as it sounds. Vastly expensive across the board—with some of the providers, let’s say, not the ideal employers.

I needed help, and I needed it fast. Ken’s needs became too much for me alone, not to mention our two huge dogs who needed love, care and lots of walks. I was sinking. Not soon enough our family grew by two: JoJo and Floyd, Ken’s wonderful caregivers. I don’t know how I could have survived without them.

Life on home hospice morphed into a surprisingly hectic routine. It felt more military than humanitarian. Vitals to be checked, supplies to be calculated and ordered. Angels on earth, hospice nurses have more patients than they can adequately and lovingly manage. The vital time for human interaction gets relegated to the back seat. Sometimes Ken’s hospice bather didn’t have time to eat. Our health care system is truly broken.

One day our lead hospice nurse told me about the option of Death with Dignity or Medical Aid In Dying (MAID). It was a transcendental moment. I wasn’t aware it was legal in California.

Instinctually, I didn’t want to share this information with Ken. The thought was too terrifying, yet deep down in the most sacred part of my soul, I knew my obligation was to share this information. It was his right to explore this option. Ken was anxious to learn more. The concept aligned with his desire for total control.

We learned that terminally ill patients under hospice care who have a diagnosis of fewer than six months to live qualify for MAID—if approved by the overseeing hospice doctor and also the doctor prescribing the lethal medicine. It is a process requiring physical and cognitive evaluations over a 15-day period.

He wanted to start the process immediately. I believe he sensed that the neurological component of amyloid was starting to take place. He could feel the window closing, he confided to his death doula.

The supervising hospice doctor sat with Ken for almost two hours. It seemed more of a social call. They shared a love of racquetball and knew people in common. But in reality, he was assessing Ken’s mental aptitude. He passed assessment round one. A few more remained, and then the rest was up to Ken.

Amyloid is a sticky, starchy protein that attacks many areas of the body including the brain. Ken was getting forgetful. He had to make sure he knew what day of the week it was. He had trouble using his cell phone. He was emotional and weepy. He was struggling, and in order to qualify to “die with dignity,” you have to be cognitively aware of what you are undertaking and physically able to drink the lethal potion without aid.

Ken chose August 3 so he could include his best friend. Our adult children felt it was too traumatizing to contemplate. Sean, our death doula—a new volunteer position at the hospital—was helping Ken plan his death path, from who would be present down to the atmosphere, music and scent of candles.

But first Ken wanted to have a “living” memorial—a huge party with our friends, neighbors. Sean didn’t realize what he signed up for! Let’s just say the party on July 11 was a wonderful diversion—a huge, memorable, exhausting success for all.

August 3 was fast approaching, and I secretly hoped Ken would pass in his sleep and we wouldn’t go through what we were about to go through. It appeared in the days before that Ken began to eat more. He was more lively. He wanted to sit on the couch. He insisted on standing to feel the floor beneath his feet. He planned one last secret shopping trip for me, complete with a medical transport van under the guise of a last meal at El Coyote.

During those last weeks, I tried to fulfill his wishes and desires. A micro bucket list, so to speak. Friends came over to say their farewells. Family came over to say their heart-wrenching goodbyes. Each goodbye ripped my heart from my chest. I could feel his anguish consuming his body.

Time was speeding forward. In a weird way, we actually enjoyed the last few weeks of his life. His eldest son, daughter-in-law and three grandchildren, and my daughter, husband and their 3-week-old son all came to visit. Ken held all of his grandchildren in his frail, thin arms and whispered goodbyes. Friends came in and out. It was a warm and loving time. I made fancy cocktails, dressed up, anything to amuse him.

We spent our last night, August 2, in our bed. It seemed only natural, and we could manage the logistics. We wanted it desperately. In the middle of the dark night he whispered, “Hold me.” I clung to him as if that hug could reverse time.

At first light he turned to me with the most beautiful Ken smile. “I made it. I’m still here,” he told me on this, his last Tuesday morning. I got up and asked him what he wanted for his last breakfast. He still had his dark sense of humor. He requested “Alison pancakes.” I made him pancakes. He ate them all.

He continued to amaze me. He wanted to walk from our bedroom to the living room—a feat that was indeed remarkable. He did it with me hovering next to him. It took a while, but shit, he did it. I honestly believe Ken encouraged his body to live until this day. He was controlling the disease and going out with a bang and not a whimper.

The day of Ken’s scheduled death, we had a small gathering with my sister, Ken’s brother and a few friends. We made champagne toasts, emptied the Hibiki from his treasured bottle. Small reflections were shared. His caregiver JoJo, his dear friend Kathy and I serenaded him with “Harvest Moon” by Neil Young. It is and always will be our song.

Everyone left us except the nurse, who would mix the potion and who would be overseeing the process. Sean the doula, my sister, JoJo and Kathy remained.

The nurse asked if Ken was ready for the pre-anti-nausea meds. He wasn’t. I can’t imagine what was going through his head. I can’t contemplate how he could be so calm.

The doctor previously gave us a description of the process. He told Ken and me it was going to be the most beautiful passing: peaceful, calm and simply beautiful. We were told how families gather around their loved one. They share tears and laughter—a beautiful ending surrounded with love. A peaceful and beautiful passing in his experience. I clung to that.

Once the medicine is ingested, the patient falls deeply asleep and within an hour to several hours, their heart stops and they pass. Everyone is different, I was told.

Eventually Ken was ready to move to the next step. We moved to the bedroom and again he walked under his own steam on those skinny legs. He even wanted to have his picture taken with just his undergarments, Kathy and I flanking his sides.

The nurse mixed the lethal potion of morphine and lorazepam, etc. It ends up being a few ounces, and you have to drink it within two minutes or you fall asleep with the possibility of not finishing the entire combination. Also, the combination of meds is extremely bitter tasting. It is so bitter it burns the throat.

I honestly don’t remember what I said to Ken or what he said to me before he drank this horrible concoction. What I do remember is that he told me he would try to squeeze my hand if he could. And I in turn told him how much I loved him and that we had already said our goodbyes numerous times. I also gave him a final “out” if he didn’t want to follow through and that no one would hold any judgment against him.

I wish I could remember our last kiss, but I don’t. I believe I was in a state of autopilot and extraordinary shock.

After a few small spoons of lemon sorbet to chill the throat, he lifted the cut crystal glass to his lips. He chugged it down in one gulp. He then said his last words on earth, “That sure did a number on my throat.”

Within a few minutes, Ken closed his eyes and then let out what I can only describe as a primordial scream, which made me jump out of my soul in terror. For the next 5½ hours, Ken did what is called agonal breathing. It sounded like horrific gasps for air coming from deep in his chest. His chest would rise and fall, and then there were moments of extreme snoring beyond a regular snore.

After three hours my sister, Kathy and Sean could hear the noise, and they decided I needed support. I had to go to the bathroom. I had to catch my breath. I had to cry. I had to somehow take a break, if just for a moment.

With the door open, Kathy sat on the bed with Sean and my sister. I suddenly realized I hadn’t let the dogs say their goodbyes. Ken and I had talked about whether the dogs should be on the bed the entire time or not, but once the process commenced, he was sitting upright in bed with me to his left holding his hand. I knew he would want them near him if only for a moment.

I invited the dogs in. Babu jumped on the bed, sniffed his dad, licked his fingers and then jumped off the bed. I.V., the eldest, took one sniff and laid right next to me. Within moments Ken’s breathing calmed slowed, and he passed.

I was promised by the nurse that Ken had been completely unconscious in a deep, deep coma during these 5½ hours. He was so loud, I was terribly frantic, thinking he would awake or vomit or try to speak. I was beside myself with anxiety, fear and nerves. I don’t know how I didn’t expire along with him.

Once he passed, I removed his wedding ring and put it on my finger, removed his love bracelet and put it on my wrist next to mine, collected his brown prayer bead bracelet from India, and we closed his eyes. The protocol is to immediately call hospice. Sean called hospice, and the nurse who came pronounced him dead, noted the time of death and called the mortuary.

There is so much more that I will share about this journey, about his desire to end his life with dignity and on his own terms. His favorite quote throughout hospice was: “In the end, we are all just walking each other home.” – Ram Dass

Join the Southbay Community

Receive the latest stories, event invitations, local deals and other curated content from Southbay.
By clicking the subscribe button, I agree to receive occasional updates from Southbay.