A Long Way Off

by Patty Somlo

The box was small and light. If it were wrapped and set under the tree before Christmas, what would I have thought?

The box’s arrival was both the end of a process and the beginning. On the day it was delivered by a courier from San Francisco, an hour’s drive away, I didn’t believe we’d ever use its contents. In that sense, it reminded me of boxes my husband Richard had stashed around the house, filled with non-perishable foods, which after an earthquake or other natural disaster, would keep us alive. Getting this box took more time and effort than compiling those emergency supplies. But like the emergency provisions, the box was only here in case we needed it. At the moment such a need seemed a long way off.

I’m not sure when Richard and I raised the subject with one another. Somewhere along the line during the four and a half years since his stage four cancer diagnosis, one of us – and I’m guessing it was me – brought up the subject. By that time, I would have been in my caregiver support group for several months, where the topic had come up.

Like me, members of my caregiver support group were taking care of a loved one with a serious illness. For all of us, the duration of our care was unknown. Those helping spouses, parents or children with certain conditions, especially stage four cancer, knew the end of life was coming. At some point.

While I don’t remember how the subject first came up, I recall something important I learned. People with terminal illnesses frequently request end-of-life drugs but never use them. In some cases, they change their minds. More often, they miss the opportunity. By the time the drugs are most needed, that window has already slammed shut.

From the moment we got the first news Richard might have cancer that had metastasized to his spine, I feared death was imminent. As he went through treatment and we rode the rollercoaster of crises that arise when someone has stage four cancer, I continued to believe his life would end at any time. Richard, on the other hand, almost never lost hope. He wanted to live a long life and believed he would. That faith meant he had no need to consider ever hastening his dying with lethal prescribed drugs.

But bit by bit, his condition worsened. An avid hiker, he could no longer make it up a short incline in the park, when we took a favorite stroll around Spring Lake. Instead of the park, he joined me on neighborhood walks, where the route was flat. Soon he reached a point where he only had enough strength to do the walk once a week or less.

He tried, without success, to eat more and bring up his weight. No matter what he ate, though, he kept getting thinner. About that time, he retreated to bed more, sleeping hours each day and retiring earlier every evening.

The chemo was working enough that his oncologist didn’t see the need to make a change. At the same time, his pain kept increasing. As soon as the palliative care doctor revised his pain prescription, he required a higher dose.

We had one meeting with the palliative doctor and social worker about the end-of-life drugs. They explained the involved process Richard would need to go through to get them. Once they were done, the social worker asked Richard if he wanted to move forward, to obtain the drugs. He said no.

Following that meeting, neither Richard nor I could remember much of what was entailed in obtaining the drugs. All we retained was that it would take time. If he might be interested, he couldn’t leave the request to the last minute. The other point we clearly grasped was that the window of opportunity to take the drugs would not last.

I had come to understand that window well. A terminally ill person with six months or less to live has to be the one making the decision to end his or her life. No one else can decide. The dying person must be capable of requesting the drugs and drinking the cocktail without assistance from anyone.

As I learned from my fellow caregivers, many people, especially terminal cancer patients, lose their cognitive abilities before death. That loss slams the window shut for taking the drugs. I also learned that changes in the late stages of cancer can come without warning.

When Richard’s oncologist took him off the chemo he’d been receiving for three and a half years and switched him to a different drug, I let myself hope the new infusions would give him more time. On this drug, it turned out, Richard experienced only one side effect. Unfortunately, the lone side effect was awful. At every meal, he teetered on the edge of getting sick, which made eating, and getting his weight up, even harder. If the chemo worked, we figured this awful side effect might be worth it.

As the month wore on, though, his pain climbed. Keeping Richard’s ever-increasing pain under control was like running a race uphill. His greatest fear, having to live with unbearable pain in his bones, seemed ever more likely. In another of our regular meetings with the palliative team, Richard decided to again discuss the end-of-life drugs. This time when asked if he cared to move forward with the process, he said yes.

If you imagine death far in the future, ingesting drugs designed to kill you is not a pleasant or worthwhile thought. The appeal of this medication is vastly different when you know death is imminent and most likely unbearably painful. In such a situation, the drugs become a reasonable choice.

There are those who because of religious beliefs think the choice should be left to God, at least to God as they define him. Everyone is entitled to their views, as they apply to choices in life. But for the rest of us, it’s critical to distinguish between suicide, taking a life that otherwise would go on for many years or even decades, and the hastening of death in someone with as little as a few days or weeks left.

Of the various names I’ve heard for the drugs, or the process of using them, the one I feel most true I heard from the hospice nurse, Lillian, who struggled to help Richard control the pain in his last days. She used the term aid in dying. As she explained one day during the time Richard was seriously contemplating using the drugs, this was not suicide. A person eligible for the drugs was going to die very soon. The drugs would simply speed up that process.

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I’ve often thought that people who knew my husband and me liked Richard best. Both introverts, preferring time spent alone and with each other to being in groups, Richard had a talent for reaching out that I lack. At every gym we frequented over the years, I was always surprised to learn how much Richard befriended fellow members and the staff. I could work out there for years and never know a single person’s name. The opposite was true for Richard.

He cared a great deal about what others thought of him. So, as he considered ending his life early, he worried that family and friends wouldn’t forgive him. Over and over, I assured him of my support for whatever he decided. I also said repeatedly that his siblings loved him and did not want him to suffer.

And there was that window. On a Saturday night, one week after Richard entered hospice, he suddenly appeared confused. When I asked what was wrong, he announced that he was going to be fine. He held his right arm up and I noticed his hand appeared to be shaking. I asked what was going on and he repeated several times, “I’ll be all right.” He then asked me when we were going to eat dinner. Hearing those words, I felt a sharp ache in my stomach. We had already eaten dinner two hours before.

The strange experience lasted for several minutes. Then he told me he was scared.

It suddenly occurred to me that what he’d just experienced might have been a seizure, one possible side effect, I’d learned months earlier, of brain tumors.

Richard had been diagnosed and treated for brain tumors a little over a year before, and I had learned seizures were possible. At the time, I could only imagine a seizure being what I thought epileptics experienced. But after this latest incident, it occurred to me that what he’d suffered six months before when he was speaking nonsense words and I called 9-1-1, might also have been a seizure.

The internet confirmed my suspicion. The following day when I told Lillian what had happened, she agreed, ordering a medication we could use if it struck again. More troubling, a seizure was a likely indication that the brain tumors had returned. In addition to seizures, brain tumors might rob Richard of his cognitive abilities, necessary to make the end-of-life decision.

There was, however, something more immediate to Richard’s consideration about the drugs. He was in excruciating pain, the main reason he’d decided to enter hospice in the first place.

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The courier parked in front of the house and rang the bell, at the time we had expected. He handed me the box, which we had been warned not to open until after the planned video appointment.

I set the box down on the dining room table, next to where Richard and I always sat in front of his laptop for meetings with the doctors. Knowing what the box contained, the potential to end my beloved husband’s life, made it seem too dangerous to be resting at the place I normally ate.

At the start of the video, the pharmacist with whom we were virtually meeting instructed us to open the box. She told us to pull out the contents, which included a colorful sheet of step-by-step instructions. We silently followed along as she read, identifying each item, including an empty plastic bottle and two jars containing medications, one of anti-nausea pills and the other the drugs to end life.

When the meeting was over, I searched for a safe place to store the box, where I would remember but a burglar couldn’t find it. I cleared off a space on the top shelf in the bathroom cupboard, so high I had to get on tiptoe to reach it.

Weeks after the box arrived, Richard suggested we read the instructions again. As we went through them, I realized a funnel would be necessary for pouring whatever liquid he might choose into the dark brown, almost coppery-shaded bottle, that would then be mixed with the drugs. I searched in the large kitchen drawer that contained everything from barbecue tongs to a small hand mixer but didn’t find a funnel. Still doubting we would ever use those drugs, I went ahead and ordered a set of three funnels that came in ever-larger sizes.

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Caring for the person you most love with an incurable but treatable cancer is a tough and ever-changing lesson in how adaptable humans can be. This adaptability is most needed by the patient, of course. My husband’s body was subjected to the ravages of cancer in his bones and the toxic poison of chemotherapy, along with side effects from opioid medications he needed for pain. Richard’s life, once so active with gym workouts and hikes, photographing and making prints, having exhibits of his work in galleries where he stood for hours through receptions, talking to potential buyers and friends, seeped away, piece by piece, until little was left beyond the treatments and recovery from them.

As his spouse and caregiver, I adapted too. On first learning he might have cancer, and worse, that the disease was likely in an advanced stage, I fell apart. Little did I know that the crises which could bring me to my knees had only just begun. The next four and a half years would unfold with one scary and heartbreaking emergency after the next, each obstacle seemingly impossible to get around or over, and yet we did.

I managed somehow, me who never wanted children, in part because I assumed a woman who still felt like a child couldn’t possibly take care of one. But here I was, learning as I went, and often falling into despair, so anxious I feared my head might explode, shattering into a thousand tiny pieces.

When Richard entered hospice, the demands upon my time multiplied, like a collection of rabbits. Someone was always in the house – a nurse, a social worker, the guy from the medical equipment company delivering something the nurse had ordered. Or the case manager had called on the phone, asking for a count of these pills or those, to determine whether an order needed to be placed. Or I had just called hospice in a panic, because even with a huge increase in Richard’s medication, the pain refused to budge.

Somehow, in this scary, chaotic atmosphere where I could barely think, I adapted, just as I’d done the previous four and a half years. We hurtled toward the end, though I didn’t know or face the fact that it was imminent.

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Earlier in Richard’s final months, we had started to meet out back, past the brick patio, to where I’d placed two black wicker chairs and a small matching table underneath the fig tree. Richard slept much of the day but got up in time to join me there before the last light left for the day and the air chilled. We talked about our wonderful life together, including favorite trips, buying a beach cottage on a whim, and how much fun we’d had there. Then we moved on to talk about Richard’s death.

I had dreaded the moments we were approaching ever since his diagnosis. Now they were at hand, we discussed what might happen to me when Richard was gone, and eventually, what would happen to Richard after death. In these conversations, we often mentioned the aid in dying drugs, though neither of us said, if this happens, that will be the time to take them. I still believed that moment would never arrive.

On a Monday morning, my husband who rarely complained let me know the pain had soared nearly beyond enduring. Thankfully, he was able to sleep, and he did so in relief, the only time he evaded the piercing hurt. I called hospice and they told me he could take more milligrams of one medication and swallow another pill more often. We repeated this several times that day, but it didn’t help.

The following morning, he was given a choice — have a catheter inserted to inject liquid pain medication more efficiently into his system or go to the hospital. Richard wanted neither. But a hospice nurse arrived and convinced him to take the catheter.

The next two days, I inserted the contents of two syringes into the catheter every two hours, which included waking up, and then waking Richard, all night long.

From the moment Richard entered hospice, we had been waiting for what we prayed would be his salvation – a pain pump. We had no idea what this device might entail or why it could help but had been told by his palliative care doctor weeks before that this mechanism might do what all the pills in the world couldn’t. For various reasons, including that the cartridge in which the drugs were supplied came from out of town, Richard had to wait. But on Wednesday afternoon, the hospice doctor came to the house and assured us we would receive the miraculous device the following morning.

A box was delivered by Fed Ex just as the doctor promised. I called Lillian and she arrived a few minutes later to hook Richard up. It took a good forty minutes before everything was in place and working. Lillian called me into the bedroom and explained how the pump worked and what I should do if the alarm on the device suddenly went off.

The black box with the digital screen and lots of controls was as big as a woman’s medium size handbag. Tubes snaked from the pump to a port Richard had had implanted several years before for infusions of chemotherapy. To get up and walk, Richard simply needed to hang the bag over his shoulder.

He was now receiving stronger pain medication pumped into his system continuously. If it wasn’t controlling the pain, every fifteen minutes he could press a button and get an extra shot.

We had waited for the pump as if it would be Richard’s savior. Each time he was awake, I asked whether the new device and drug were making a difference. His answer became monotonously the same. At first, he would say that yes, he thought it was a little better. But when I asked how he would rate the pain, what the nurse would ask when she called, he inevitably said, “Six and three-quarters.” This was on a scale of one to ten, ten being the most painful.

Drug levels were increased and increased again. In the end, my stubborn determination to get my husband the pain relief he needed made not an ounce of difference. Something had gone awry in Richard’s body, as it dealt with pain. No amount of medication, it seemed, was going to make a dent.

Lillian sat me down in the living room to impart the news.

“I don’t think we’re going to be able to control his pain,” she sadly reported.

The only option left, she explained, was to put Richard in the hospital. There they could try a nerve block or some other thing that went right past me. I was not about to let Richard die in a hospital alone, away from me. It was clear I needed to tell Richard what he must have already known.

While everyone’s primary focus had been on easing Richard’s suffering, he had been steadily going downhill. When his initial nurse case manager had ordered the delivery of a walker, my first thought had been, Richard will never use that. A few days later after falling twice, he began leaning against the metal walker, pushing it ahead of him as he moved the relatively short distance to the bathroom.

He had now become too weak even for that. I requested a hospital bed to be delivered the next morning, because he was no longer able to sit up from a prone position without help.

In a short week’s time, he had lost considerably more weight. Seeing how painfully thin he had become, I needed to turn away, so he wouldn’t see me crying. Richard had told me many times he did not want to be bedbound. Even though I had never cared for anyone with a serious illness before, I could tell that fate likely awaited him in less than a week’s time.

As the piercing pain hung on without letup, my husband who had uncomplainingly endured many harsh side effects for four and a half years began threatening to end his life, nearly every time he was awake. I asked him to quit throwing those words around, as if they were a simple childish taunt. If you decide to take the end-of-life drugs, I said, you should thoughtfully consider that step, instead of making threats. It’s not to be taken lightly, I added, and he agreed.

The next time he was awake, and I gave him one of the pain medications he was still taking in pill form, he quietly announced that he’d made the decision. He wasn’t sad, he assured me. He’d had a good life, and a wonderful life with me.

I held his hand as he spoke. The decision that had seemed remote when we received the small cardboard box, had inched forward as Richard’s pain increased and the medicines failed. It had also moved closer as his body drifted further away from life and nearer to death. Yes, I felt a deep sorrow and cried, at the same time letting him know I understood and supported his choice. I was also aware that even if he didn’t make this choice, his days with me had probably whittled down to a handful.

Pain wasn’t all that remained unaffected by the infusion of large quantities of medication designed to quell suffering. Throughout this ordeal, Richard stayed perfectly lucid. He didn’t seem the least bit drugged. His words were clear, as was his thinking. Though his body faded, becoming weaker by the day, his mind was amazingly sharp.

There was no disputing that he had made a conscious decision to aid his dying, speeding up the process by at most a week or so, not the least bit confused about what taking those drugs meant. For the four and a half years of his illness, he had clung fiercely to life. Even when he decided to go forward with the end-of-life process that culminated with delivery of the drugs, he still expected his life to continue for a good amount of time.

As his sole caregiver, the love of Richard’s life and he of mine, the person who’d been at his side throughout, talking endlessly about the cancer, treatments, side effects and ways to make him feel better, I understood. The journey he had nearly completed was not only a physical one, with cancer invading his bones, causing the hurt that no amount of opioid medicine could lessen, but a mental and emotional struggle, landing where he not only accepted but welcomed death. Teetering on that precipice, he now moved farther, determined to take death into his own hands.

He first settled on several days away. I didn’t know why and didn’t ask but agreed to make the arrangements.

The next time he was awake, he said he wanted to move the date up, by one day. As soon as I confirmed that he was choosing Monday, rather than Tuesday, he changed his mind again. Now, he explained, he wanted to end his life in less than twenty-four hours.

We were sitting next to each other on the side of the bed he’d barely left for days. I explained that Lillian, who’d been helping him these last weeks, wouldn’t be available on the date he’d chosen. He said that was okay.

When I called hospice, the nurse on duty said she would have a very experienced nurse there to assist us. We had already been informed that the nurse could not be in the room when Richard took the drug but would be there to help before and after.

A few minutes after I hung up, the phone rang. Lillian was on the other line. She had changed her schedule, she said, and would arrive at our house the following morning, a little after nine.

After four and a half years of worrying that my partner of nearly three decades was about to die, I felt surprisingly calm. In fact, I didn’t worry about him that night, one of the only times during this long struggle to keep him alive. I was afraid instead that the end-of-life drugs, like the pain medications before them, might not work, or I would mix them wrong, or Richard wouldn’t swallow the entire concoction in time.

The next morning, I woke Richard up and gave him the pills to prevent nausea, the first step in the process. Our neighbor and friend Will arrived as scheduled to say goodbye. A few minutes later, he emerged from the bedroom sobbing, and we hugged and cried.

I walked to the bedroom after he left and saw that Richard had gone back to sleep. A little less than an hour remained. That’s when I would wake him, pour the powdery medication mix into a cup, add the apple juice I’d bought, stir, and hand the cup to Richard to drink.

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I turned around for a moment and he was done. We hugged, said I love you, and I cried. Then he lay back down for the last time.

Earlier that morning Lillian had explained to me what happens after a person takes the drugs. She was describing the dying process, so I wouldn’t be worried or frightened. It might appear that the person is suffering, but she assured me, he is not.

I sat on the side of the bed, my arm around Richard, and watched him breathe. Each inhalation caused the bright white cotton of his shirt to move slightly. Lillian was at the end of the bed, timing the breaths. She would determine when my husband was no longer alive.

He lay on his right side, legs folded in the bright red and turquoise plaid flannel pajamas I’d bought him online, not needing a blanket because for days now, he’d been excessively warm. His arms were under his head, fingers curled. He looked so peaceful.

Seven minutes after ingesting the drugs, he fell into a deep sleep. Lillian informed me of that. I waited for what she had warned might happen, but nothing of the sort occurred. My husband just slept, breaths becoming shallower as time passed.

And then his shirt didn’t move. We both thought that was it. Lillian checked his pulse and said it was faint but still there.

There’s a term in meditation, monkey mind, for the usual way our thoughts leap around from one worry or plan to the next. Anyone who has tried to meditate, focusing on the breath coming in and going out, knows how easily the monkey mind invades, enticing thoughts here, there, and everywhere. On this morning, my thoughts were nowhere but on Richard’s breaths. I wasn’t leaping ahead to the overwhelming grief I knew would assault me when he was gone. Neither did I ponder the right or wrong of helping Richard die by mixing the medications with apple juice and handing him the cup. I was there with him, both taking our breaths, as I’d been with him through so many memorable times, joyful and sad.

Now there were pauses when Richard’s shirt didn’t move, and I thought that was the end. But the breath returned, shallower than before. And finally came a pause that lasted longer.

Lillian reached for Richard’s wrist and let me know there was no pulse. She listened for his heartbeat with the stethoscope and solemnly announced that he was gone. For what seemed like hours, I lay beside my husband, and held him and sobbed.

Unlike cancer diagnosed in an early stage, when the disease is advanced, metastasized from the originating site to other organs, or in Richard’s case, the bones, it is not curable. Oncologists will stress that though not curable, stage four cancer is usually treatable. From my experience as Richard’s caregiver, I can say that treatment for stage four cancer is somewhat like the boy with his finger in the dike. At first the boy succeeds in keeping the water from escaping, causing a devastating flood. In time, though, it becomes more and more difficult to sustain the effort.

When I visualize the forty-two minutes Richard lay peacefully on the bed as death approached, I see the exact opposite of those years struggling to stay alive. For caregivers like myself who’ve witnessed the damage cancer treatments cause to the body, assaulting happy, healthy cells in the process of killing the bad ones, the gentle way Richard left this life was a welcome counterpoint. Death came like a friend, taking Richard’s hand and leading him quietly away from the body that was at last done.

I have relived Richard’s peaceful death in my mind scores of times. In part, I have needed to come to grips with the fact that he is truly gone. It is also a way of consoling myself when I’m fervently wishing he was still here. I am grateful that after trying so hard to live, my husband had the wherewithal, courage and means to choose a good death.

I married my husband on a sunny August morning in San Francisco, a city whose summer days are famous for fog. We opted for a simple civil ceremony at city hall, not an elaborate church wedding and a fancy reception afterwards. I heard the words of the ceremony, in sickness and in health, with no idea what the future held in store.

Having participated in the process of what Lillian called aid in dying, what in my former state of Oregon is called Death with Dignity, and what Richard’s and my health care plan dubbed End of Life, I will now give my own name. Friend in dying is how I will forever think of the choice that Richard made. When he reached the point where he decided that he’d suffered enough, Richard invited this friend into what remained of his life, a friend in the truest sense, who kindly helped another friend move on, to whatever adventures might await him in the next life.

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Patty Somlo’s most recent book, Hairway to Heaven Stories (Cherry Castle Publishing), was a Finalist in the American Fiction and Best Book Awards. Two previous books, The First to Disappear (Spuyten Duyvil) and Even When Trapped Behind Clouds: A Memoir of Quiet Grace (WiDo Publishing), were finalists in several book contests. Her work has appeared in numerous journals and anthologies. She received Honorable Mention for Fiction in the Women’s National Book Association Contest, was a Finalist in Parks and Points Essay Contest and for the J.F. Powers Fiction Award, and had an essay selected as Notable for Best American Essays.

Image: Kelli McClintock

ID: white box open on a table.