Two years ago today, my husband Jeff Stamps learned that he had Stage IV pancreatic cancer, a fatal disease (overall survival rate of less than 4%, according to cancer.gov). Jeff lived 13 months against an initial prognosis of 3-6 months, given the late stage of disease. Most pancreatic cancer is detected at the same stage as Jeff's. The pancreas lies deep in the body, behind other organs; typically the symptoms of "pancreas cancer" (how his oncologist always referred to it) don't present until something dire has happened, as was the case with Jeff.
This anniversary (indeed all that surround a death) is not the easiest of days. The tendency to relive the hours, recall the details, and wrestle with the absence is compelling. It's hard to know what to do with the maelstrom. One way is to publish Jeff's own words about this day. Herewith the opening section of "A Dangerous Experiment," his memoir, which he began seven weeks after Diagnosis Day.
On May 5, 2010, I went to my physician with a “stomach complaint.” By four that afternoon, I learned its origin: Stage IV pancreatic cancer. My life went from looking into an indeterminately long future to anticipating its end.
The Tibetan word bardo means between. It is a chunk of time in the ongoing process of life, death, and rebirth. I call this unique period of life-lived-with-immanent-death my “Terminal Bardo.”
This is my experiment in bringing awareness and openness to life’s greatest challenge. Naturally, it’s unavoidably fraught with the deepest emotions. There are real possibilities for joy and growth together with the ever-present risk of despair and contraction into a stunted psyche.
My Terminal Bardo
A month of increasing stomach discomfort brings me to my long-time primary care physician. Dyspepsia, I’ve self-diagnosed. However, the doctor says something different that Wednesday morning. “Obstructive jaundice,” he mumbles. “Gallstones are the most likely cause of blockage.” He does not look happy. “You need an ultrasound.”
I text my wife Jessica with the news. She’s finishing a meeting at a local coffee shop and I have to pick her up. By the time I arrive, she’s prepared for us to go to the Beth Israel Deaconess Emergency Room. “Pack a bag,” she says. It’s an announcement, not a suggestion. “Tom says we need to go to the ER to get some tests.” Tom Lamont, a next-door neighbor of 38 years and close friend, is Chief of Gastroenterology at the hospital. I listen to Tom.
Once in the ER, things move quickly. First an ultrasound. A technician does the exam, leaves the room, and returns with a radiologist, who does another series of pokes and prods. Not a good sign. It doesn’t sound like gallstones. Jessica watches him type two words on the ultrasound computer screen: “Panc head.”
The ER attending physician comes to the small cubicle where I’m being held until some determination is made of my condition. He stands with his back to the wall and looks down. “This is why I hate being a physician. This is the worst part of the job. This is really awful.” He goes on this way, talking about how difficult it is to say what he’s about to say, but not saying it. “Possible pancreatic cancer,” he mumbles. He’s ordered a CT scan. He is gone in a minute.
When I return to my little curtained-off piece of the ER after the CT, our friend who is then CEO of the hospital has arrived. The attending physician reappears and does a double-take when he sees the chief executive sitting there. This time we get a professional report with questions answered. Pancreatic cancer likely, he says, with suspicious lesions on the liver and possibly the lung. “Meaning,” I said, “it could be metastatic, Stage IV?” “Yes.”
Jessica asks our friend to take notes: “they found a two-centimeter mass at the head of the pancreas. A small lesion on liver—may be an incidental finding—too soon to know; and a small lesion on a lung—may be an incidental finding—too soon to know…”
Leaving the cancer diagnosis hanging, the doctor addresses the immediate problem: the blocked bile duct clogging up my system and causing significant distress. I will be admitted to the hospital. Someone in Tom’s group will insert a stent in my bile duct the next day, open it up, and relieve the pressure.
What does the diagnosis mean, I wonder? Until age 65, I am the picture of health with the ignorance that goes along with that. I don’t know where pancreatic fits on the cancer spectrum. It isn’t sounding good, but really, how bad could it be? On the other hand, stage IV of anything is definitely not good.
From the moment I’d texted her, Jessica has been searching online. She is far more medically savvy than I am, and by the time the radiologist types “panc head,” she’s already figured out that this is what it might be and has an idea of what it means. Incurable at any stage. Most people (80 percent) are diagnosed at Stage IV because it is the symptoms of already advanced cancer that force people to the doctor. There are no tests for early detection.
Jessica has already contacted our daughters, Miranda and Eliza, who live in Brooklyn. By the time we get the CT report, the girls are on their way to Boston with Lake and Finn, Miranda and her husband Jay’s eight-month-old identical twins (Jay will shortly). We ask the doctor to put the phone on speaker, and are daughters are getting the news as we do, listening while driving north.
Over the long hours it takes to get a hospital bed, we have a lot of small talk; I get drugs for my symptoms. Jessica isn’t saying much about what she’s learning, although at one point, as I’m probing for how serious this might be, she tosses out five years in some unclear context. Ok, it’s serious, I think. But I’ll wait for the full evaluation to decide how worried to be. I don’t yet know that the CT scan is so clear, so conclusive, that I am already being treated as if I have a confirmed diagnosis, which usually requires a biopsy.
It’s nearly midnight before I’m admitted, traveling the two blocks from the ER to the main hospital by ambulance. I have a terrible night. My roommate is very loud. His IV machine beeps constantly, and, as we are at the end of the hall, the squeals persist for a long time before a nurse arrives. And by now my bile obstruction really hurts, and I’m squirming in the bed to find a tolerable position.
I’m on the window side of the shared room. The dawn light is just breaking, a normally beloved moment in the day. My curtain rustles, and my trusted neighbor Tom sticks his head around. “Hi Jeff, can I come in?”
As I’m curled toward the window, Tom walks to a point between me and the light. All I see is a tall figure with a long white coat, the face shadowed, featureless. He talks. All I hear is one phrase, “…and some of my patients have lived as long as a year.” It was, Tom tells me a few days later, in tears, the most difficult moment in his professional career.
I am terminal with months to live. Now I know with clarity.
After Tom leaves, the day becomes a blur of activity. Nurses, interns, and fellows precede the surgeon, Mandeep Sawhney, who is my “care coordinator” for the day. Jessica and the kids arrive. Surgery to open my bile duct with a stent takes longer than expected because of the size and position of the cancer mass, and no biopsy is taken. I am in pain and drugged as I am wheeled back to the hospital room following surgery.
Not long after, a young oncologist shows up, advanced by a fellow and trailed by interns. Next steps are pretty clear: A course of two rounds of chemo followed by a CT scan to see how I respond to the palliative, not curative, drug. Treatment options, few as they are, would follow. The normal prognosis for untreated progression from the point of my diagnosis is 3-6 months. Successful chemo adds 2-4 months. Thinking positively, that offers a 5-10 month probable window of life.
Every day has just become very precious, but I’m not focused. I’m still having a difficult recovery from the surgery. I flicker in and out of conversations as my people visit—my sister, Susan, and close friends, Kate and Ben Taylor and Jean Nichols. It doesn’t take long for Jean, a PhD microbiologist, to deduce from my appearance and behavior that I probably have a post-surgical infection. She calls Tom with her suspicion; he calls the hospital; and soon I’m on IV antibiotics. It is well into the early morning before the pain subsides and I drop off to sleep. By late that afternoon, I am home.
How did I feel when a dear friend tells me I am terminal?
I have been processing the incoming news about my condition since the ultrasound, so I am not surprised. But, the time frame is considerably shorter than what I expected. For reasons I cannot fully understand, I move to acceptance.
This acceptance does not feel passive. I snap into a new reality, a moment that becomes a point of action. Acceptance begins a unique period of consciously living with dying.
My calm seems real, but my mind is racing to unpack how I must really feel. Fatal and fast-growing, this cancer is no ordinary diagnosis. This is a once-in-a-lifetime test.
How did I get to the place of acceptance? I wonder where denial and anger are. Familiar with Elisabeth Kubler-Ross’s work on the stages of grief, I test the expected emotional pathways.
First, I am not expressing denial. No one around me is denying it, no family or friends or medical professionals have expressed mitigating possibilities. Here we are all helped by the clarity of the CT data to the doctors.
Moving beyond denial, I am enormously lucky that a trusted doctor provides the prognosis quickly. There’s nowhere to hide. A new reality bounds my life.
More surprisingly, there is no anger. I am no stranger to that emotion, having struggled mightily with it over the years. Here it seems absent. At 66, I don’t feel cheated or robbed of time rightfully mine. Nor do I feel sentenced for some misdeed or punished for a badly lived life. Besides, no one suggests that anger helps at all. It is just a waste of time. This no-anger attitude, never complete, persists and has a big effect on my psychology, social surrounds, and, I believe, avoids negatively impacting my chemical physiology.
Then there is no bargaining. I accept the diagnosis. However, within the Stage IV context, I will have choices, even if treatment options are limited and in any case are palliative not curative.
Some basic decisions fall into place. Yes, I will follow treatment to maximize the prognosis, but I will choose with high consideration for the quality of my remaining days. I will aim for a conscious death at home. Although I’m open to all options, I will not rush around trying every cure, trying to buy a few more weeks. What I will do is offer my body and the therapies applied the best possible mental attitude for their success.
Depression, too, is largely absent. Intellectually, I understand why it appears in the gap between bargaining and acceptance when the bargain is lost. Often, the dying person begins to shut down his or her social network and retreat into grieving. I find myself, naturally an introvert, opening up to an ever-larger network—family, friends, even people I know only tangentially.
Finally, acceptance. I still cannot fully fathom how I am able to reach this point: calm and clear. Even after examination, I feel this acceptance with no hint of passivity. It’s an acceptance that frees me to live intensely and in the moment while preparing for death. This active, every-day-is-precious acceptance also permeates the new intimacy I’m developing with my nearest and dearest.
Don’t get me wrong. While the stages did not unfold in the prescribed manner, there was and is grieving. Sometimes I cry a little with Jessica, or the kids, or with a friend as they grieve openly, usually briefly (with me). Sometimes the grieving comes on unexpectedly.
Six weeks after my diagnosis, I am driving our boat across Lake Winnipesaukee in New Hampshire with the whole family onboard. We are on a day trip to open our rustic island cabin on a piece of paradise connected to my earliest childhood memories. I find myself sobbing across the waves, no one aware over the roar of the engine. Grieving is a part of life.
One other feeling stands nakedly before me upon reaching terminal acceptance: Fear. You can’t fake it, not to yourself, particularly in the quiet moments, or the dark of night. How I hold fear will have an inescapable guiding influence on my inner experience of progress towards death.
For me, blessedly, so far fear has been largely absent. Indeed, old fears about dying in old age have disappeared. Most especially I will not die like my estranged father, who at 91, may well outlive me, albeit gripped by late-stage Alzheimer’s dementia and depression. Long life is not always wonderful.
These are the emotional “facts” as best as I can describe the indescribable. These feelings and their respective absences are all simultaneously present in the early morning light of my “terminal initiation.” Even as I experience “not-denial,” “not-anger,” and “not-bargaining,” I wonder why. Maybe the shock and denial are so massive I am dissociating from reality. Yet the emotional state that comes on in the hospital remains fairly stable as I approach the two-month mark and the beginning of this memoir.
For me, the word that best describes my state is equanimity.
What brings me to equanimity? I do not know, but I hope to understand more through this exploration of my Terminal Bardo.
Shock and Awe
That first Friday night home from the hospital is not so good, but not too bad. The next morning I get up early as usual, and stumble upstairs to my third-floor study.
I have had a third-floor place of work and thought since 1968 when I sat atop 46 Leckford Road in Oxford (famously occupied by Bill Clinton who moved in when I moved out). From that perch, I looked out my window across the famous spires of Oxford, often shrouded in wisps of fog. Those years as a Fulbright Scholar, co-founder of Oxford’s American anti-war group, and student of Thomas Hobbes and systems theory, were formative. Most importantly, it’s when Jessica and I met.
Since 1972, my third floor has been of an eighteenth-century Early Georgian house (c. 1723) on a park-like acre of land in Newton, Massachusetts. We had just married and were looking for a place to settle in the depressed housing market of the early 1970s, when no one wanted a really old run-down house. Raised in houses of this vintage in New Hampshire, I saw home. And so it has been ever since.
I have an easel of my own making, a standing board covered with butcher paper that overlooks the yard. This is where I externalize my thinking, recording thoughts and events, outlining tasks, drafting plans, writing notes, and making sketches. I have a pictorial history on “big white sheets” going back three decades.
On that day’s sheet I’ve written in red pen: ”May 8. Diagnosis: PANCRATIC [sic] CANCER. Stage 3 or 4. Months to live.” In green, “WHOLE FAMILY HERE. Kids and grandkids staying. Will be an amazing time.” I can’t even spell the name of the cancer.
And, yes, it is an amazing time as family and friends converge. We had just become a multi-generational household. Again. Except now I am a new grandpa. Miranda has decided to work from here and is staying on with the twins as has Eliza while Jay becomes the bi-city commuter.
From the moment I text Jessica with my symptomatic diagnosis, I have been surrounded by caring people. This social blast is greatly heightened by all the extra activity occasioned by the twins. First, of course, is the care required of two tots. Then there is the fact they are incredibly cute and everyone wants to see them. Many friends and friends of friends flow through as Miranda and Eliza grew up here in this house.
On Monday night we attend our regular book club across the street at Tom and Emily’s house. Tom, yes, GI Tom, and Em had started this group with several others twenty years earlier. We are newcomers, only ten years into it. It is a highly emotional evening. This is when Tom tells his side of the “terminal moment” experience, with tears, not common to him. Later, the book clubbers ask about my experience, what I think about dying, and what I think of the afterlife. Over the next few weeks, this conversation will repeat many times. It is as about as intimate a conversation as you can have.
These are the days of shock and frenetic activity. On Tuesday we begin the process of deciding what to do with our speaking, consulting, and software business, NetAge. I see my long-time therapist and begin the process of rapid disengagement after ten years of work together. It is clear to me that this very talented Harvard-affiliated psychiatrist cannot face her patient’s new reality.
On that same day we go to Newton Cemetery to look at plots. For me, cremation is a settled choice so I am drawn to the simple urn garden by a pond. Jessica realizes that she has not really thought it through. “Can it be a burial without the sound of dirt banging on the casket?” she asks. Obviously, no bodies can be laid by an urn garden, but you can put an urn in a dual gravesite (none of which seem all that appealing, although we temporarily reserve a spot). Later, Jessica resolves her feelings—at least enough to make a decision—in favor of cremation. Six weeks later we buy a tiny patch of turf by a new pond—with the cemetery address “J1.” This resonates with our nickname, “J&J.”
The following day, a week post-diagnosis, finds Jessica presenting a long-scheduled webinar, and then both of us meeting with our financial advisor and an estate lawyer. That afternoon we have our first visit with an oncologist and schedule a course of chemotherapy. Wednesdays are to be our day.
It’s only Thursday, just eight days after the diagnosis. I go to my last therapy session. You’d think now is when I need expert counseling, but the therapist hides, in denial, not showing up for the appointment. I go for my prescheduled annual physical with my primary-care physician who has cared for me for over twenty years. My brother David arrives from New Hampshire. The yard and house are full. Friday, the same.
As the week progresses, a parallel stream of activity picks up. The Saturday after my diagnosis we are supposed to be in Brooklyn to attend a naming ceremony for the twins. Relatives and friends from around the country are coming. It is, of course, canceled. Well, postponed, really, as we all decide a few days later that we need to go ahead. Miranda and Jay re-conceive and reorganize the event for the forthcoming Saturday in West Newton. It is to be held in the very old Unitarian Universalist church in our local square where we had taken the kids during their tender years and where they both did a “Coming of Age” ceremony.
On a perfect spring Saturday morning, Miranda leaves early for the church. Eliza and I follow a little later, walking to the square. We arrive at the church as an unexpectedly large group gathers: Jay’s family, mother Ardis and brother Hunter, from Birmingham, my brother and sister, Jessica’s brother Eric and niece Amanda from Philadelphia, a contingent of friends from New York, and of course long-time Boston-area friends.
Many in the crowd know about my condition. Some are just finding out. Birth and death mix openly but do not distract from the event at hand, focused on the miracle twins, Finn and Lake. The lay minister does a wonderful job following and leading the script that Miranda and Jay have laid out for their sons.
Everyone, 60 people or so, comes back to the house. It’s a perfect day for an indoor-outdoor party. The ground floor of our house circulates from the kitchen around to an inside porch that leads to an outside patio and the yard that connects back to the kitchen. As the morning-afternoon crowd wanes, new people show up and the party doesn’t really break up until close to midnight. The next morning, a few people arrive for breakfast, more for lunch, and on into the afternoon.
On Monday, the previous week’s pace continues. It starts with an appointment with a pancreatic oncology surgeon. Although I am a highly unlikely candidate for surgery, he allows us to get a good high-resolution look at the CT scans that are the basis of the diagnosis, albeit in the sobering context of the cancer being so advanced it cannot be excised. In the afternoon we meet with the estate lawyer. Late that night, Jessica is somehow able to write a blog post, A turning for J&J, that makes our personal situation public. There’s no let up the next day.
On Wednesday, May 19th, we meet with Hester Hill Schnipper, an experienced oncology social worker… and I start chemo. My new life on drugs is underway.
As the cancer-specific pain has increased over the past week, a complicated set of medications, dosages, and times of application come into play. Now my first infusion of chemo also includes a range of ancillary drugs, some of which I don’t respond to well.
Our assigned oncologist doesn’t communicate clearly so we have to learn how to use the meds and sort out their conflicting side-effects from the baseline effects of the cancer and chemo ourselves. Bottom-line, I feel sick most of the time. Oddly, however, I have a good feeling that I will do well with this treatment.
Despite how badly I am feeling physically, the following day is similarly packed, including the terminal session of my multi-year therapy and treatment for anxiety. Ironic.
That evening we are the guests at a Tibetan baby-welcoming ceremony for Jasmine, daughter of our dear friends Phuni & Wangchuk. We are to open the ceremony and they gently encourage me to tell people of my diagnosis. Tibetans do not shy away from death, and it is natural for a ceremony welcoming life to include a reminder of its end, for we all live with the certainty of death.
Jessica tells the group about how we came to know these two remarkable people. I speak to the preciousness of life and preparing consciously for death. Some people appear moved. Most non-Tibetans have not heard anyone talk publicly about their impending death. I look the part as I am in a lot of pain. We do not have the meds figured out yet, and we don’t have what I need with us, so we leave early.
At my calm, my daughters exclaim: “Who are you? And what did you do with our father?” None of us can hide from our children, who know us all too well. This is a new side of Dad. Also a little crazy since this is not how people typically, I’m told, react to an out-of-the-blue terminal diagnosis. But, as Miranda keeps saying, “We’ll take it.”
Here, at the end, I can be the best role model of my life for my children. Now I can’t backslide. I have to stay the course of equanimity, acceptance of death with zest for life, and a continuing willingness to grow and transform. They hold me to the gift I offer them in the manner of my dying.
My unexpectedly calm emotional state is apparently contagious. The courage and grace of my wife and daughters amazes me. We are working together to make this time all it can be. We are all, each of us, reaching down deep and knowing this is a never-to-be-repeated moment. We are making this a signature time of our personal histories.
We will make this work for us.