Endless Knots

A crappy bronco ride on a chipped pony: Advice for Liz's friend

"I'm writing for some advice," the note from Liz began. "My friend L is now at the end of the road; likely to die within a few days.  Her husband, J, is facing the quiet of the house without her so soon, and I'm wondering what (if anything) your amazing friends offered in those first days post-death that may have been either comforting/helpful or really off key (so I can do some things and avoid other things)...All advice most gratefully accepted."  

I met Liz when my husband was dying. "I'm an amateur oncologist," she said, by way of introducing herself. I noticed her silver bracelets (I don't leave home without them) and laughed at the same line I'd been using. If you're paying attention when people you love are dying, you learn a lot very fast about drugs and blood tests and tumor markers, in our case, the CA 19-9, whose rises and falls you watch like the weather.

I hadn't heard anything new about L for a while until the night before last when I got Liz's note and so we spoke.

She’s right, by the way. I do have “amazing friends,” who have known when to drop by (once late on a bad Saturday night), what to say when they called (“can I bring lunch over?”), how to help me empty the drawers of Jeff’s study (“let’s just put all this in a box labeled ‘later’”).

I offer this in the spirit of "this is what worked for me." There are no prescriptions for grief. They all must be custom compounded in our own weird laboratories of survival and any advice that comes with musts or have-tos or don'ts should be returned to sender at about twice the velocity it was delivered. At least in my experience.

Here's what I said to Liz:

Clean out: I had all of Jeff’s belongings removed from our room the day he died, kindly engineered by a friend of my daughter’s, who also stayed with me off and on in the months following. Nothing was thrown out; everything was neatly folded and put in plastic boxes. Even the items on his bureau were removed. For some people, seeing these things might be comforting but there was so much of Jeff everywhere in the house that having less in the bedroom made the minute-by-minute a bit less raucous. It took much longer (more than a year) to completely dismantle his study but that room was not on my regular route around the house.

Phone it in to the funeral home: Our friend Tom went to the funeral home with me a few hours after Jeff died to make “arrangements.” In retrospect, I should have insisted on having this meeting on the phone. I remember having to wait an agonizingly long time in the pale carpeted halls of the funeral “home” for the funeral “director” because he had “a customer,” which is what I thought I was, but because we were going for a simple “package”—no limos or hearses to drive the single mile from the Unitarian Church to the cemetery—he treated us more like people at the bargain bin in the basement. (In retrospect, I forgot to tell this to Liz. Bottom line: engage with the funeral people via conference call if at all possible, alternatively, as briefly as possible.) 

Tell a bedtime story: My kids did something unexpected, spontaneous, and very soothing that first night. They came into what had been just a few hours earlier our but what was now my room, sat on the bed, talked, then stayed until I fell asleep. Granted, they’re adults so you might expect such a thing, but I didn't and still can't quite believe it. It was their dad who’d just died in that very room, in that very bed. It was their incalculable loss and they had the generosity and maturity to realize what such a night might present after thirty-nine years of marriage. 

Get out of Dodge: We all left just a few days after the funeral, my younger daughter back to work at an artist residency that she was running that summer, the rest of us to New York, where my older daughter, son-in-law, and grandkids live. From there we went really away for about ten days. I think. I can’t remember how long it was. We went somewhere exotic, to an island I’d never heard of in the Caribbean, one that was too expensive, of course, to a rental with a pool and a cook and lots of gates on the doors and windows. I had my own room in a wing off the kitchen, which was good because I was able to cry and not feel as if I would disturb the kids more than they already were disturbed. I tried to write but that was futile. We swam, ate, and watched movies. I worried about the twins, who were not yet two, cracking their heads on the tile floor. I remember the looks on the faces of the cook and her sister when I defined “just” in regard to when my husband had died. Takeaway: go away if you can. Not for a “vacation,” because you can’t really enjoy anything, but for a transition. We might have done just as well in a rented house in the Berkshires but in retrospect I think being in such unfamiliar surroundings was a very good thing. Everything was going to be different and this was a good way to make that palpable. Even the food was unfamiliar.

“It gets better:” My son-in-law’s mother, whose husband died swiftly of a vicious cancer when her boys were eleven and fourteen, said these three simple words as she was leaving my house the night of the funeral. I so hoped she was right because the beginning is a crappy bronco ride on a chipped pony with some mean critter continuing to stuff quarters into the coin box. Which reminds me of something my older daughter said “at the beginning,” when I referred to “the beginning,” perhaps a month after Jeff died. “Mom, the beginning is going to go on for a long time. The first few years are going to be the beginning.” After decades of marriage, the beginning is still going on, thus, as usual, she was right. As was her mother-in-law.

It also can get worse: As the months wear on, the crowds die down and the weekends loom. We talked about this a lot in our grief group. I’ve told this story elsewhere, the value of sitting with the same nine people, all of whom had lost mates around the same time, in a safe setting every week. Did our group go on for six weeks? Or six months? Or was it a year? Did we meet every week or every month? I can’t remember now but with that group—Barbara, Doug, James, Jim, Susanne, Mary Ann, Margaret, and Dagmar, led by Sue—the weird torques of reality that ached like slivers of glass in the soul seemed normal. What to do on a Sunday. How to fill a Saturday. Whether to sell the house, a question we all raised at about the same meeting, a confrontation with the way life has been that hit us all at about four months, the same time for me that the near-nightly dinner invitations died down.

“You’ll learn things about yourself you never knew:” Marianne has “lost” two husbands, one suddenly when she had three small children, the other slowly after she and her new husband had brilliantly blended their families, leaving her with six. Others have written about this use of the word “lost,” as if you went into the woods together and one of you wandered off, never to be found again. Or like you misplaced your keys. Permanently. It’s like that. Marianne asked me out to dinner about six weeks after Jeff died and offered this advice. I thought she meant I’d learn things right then. Immediately. The only thing I’d learned up to that point was that my hearing was attuned to every movement Jeff made in the house. He was a very quiet partner, actually, soft on the stairs, not the type who banged around in the kitchen. He never even watched a football game (though he would hunch forward watching his young hero Bode Miller, who skied on the same mountain that Jeff loved more than any, Cannon, and made the occasional cheer for him).

As time has passed, Marianne’s advice has proved true. I have learned to climb out of all the gender related traps that we’d fallen into—being willing to part with money for help with things I don’t like, for example, such as climbing a ladder to clean gutters. So that’s one of a string of very obvious things, superficial even. As I write this, I realize that I can’t put words to what those other things are right here and right now but I know the deep interior of me has different contours than its architecture of nearly two and a half years ago. Death grows you too.

 

"I feel centered" -- from Jeff Stamps's A DANGEROUS EXPERIMENT

One year ago today, Jeff Stamps died of pancreatic cancer, at home, where he wanted to be -- where he always wanted to be, even at his very healthiest. In the thirteen highly-productive months that he lived post-diagnosis, he pulled together three manuscripts, including his memoir, A Dangerous Experiment, that I've posted from before here.

In thinking about what to post today, I'd planned to include the last sections that he wrote. But I can't find them. Chalk this up to circumstances (I don't have access to his computer today, for example), but there are likely other reasons. Thus, I'm posting a section he wrote on "centeredness," a very good word that arcs across how Jeff wore his fate.

The beautiful little boy in this picture was centered as only two-year-olds can be. Watching our identical twin grandsons today, just a little older than Jeff was when this picture was taken, I thought many times of Jeff as a little boy, wide-eyed in wonderment at the moment. Which is precisely how he approached his death. He is so missed.

 

From A Dangerous Experiment by Jeffrey S. Stamps

I feel centered.  Looking through my notes and at earlier drafts of this book, the word appears often as my attitudinal shorthand.  Recently, a friend spontaneously said, “You look centered.”

In simple terms, a centered attitude lies between optimism and pessimism, a middle-way that looks as clearly as possible at the current situation and options, then leans in one direction or the other along the lines of one’s normal inclinations.  This centered attitude might be usefully thought of as a third bucket, a third way of being a terminal patient aside from optimist or pessimist.

A centered stance may also go deeper and include a quality of mindfulness.

In my terminal initiation story, I have experienced feelings of calm and acceptance as I dealt with news no one wants to hear.  I continued to examine this feeling against the denial, anger, bargaining, depression, and acceptance stages and found myself already moved into a starkly new personal reality.  I did not flip out as the realization hit full force with my friend Dr. Tom Lamont telling me “some of my patients live as long as a year.”

As the days, weeks, and months have unfolded, a time of emotional intensity filled with lots of positive and negative events, I have found a new normal and an attitude of equanimity.  For the most part I don’t get too bummed out by negatives, nor do I punch the air with the thrill of victory, particularly not with respect to the course of my treatment and disease.  As for negatives, how bad can it get?  I’m going to die relatively soon.

I want to emphasize that this equanimity, this centeredness, is not a passive state, some pleasure-pain neuter midpoint.  To the contrary, it is a very active emotion, always adjusting to fast-changing circumstances.  Sometimes it is struggling to limit feelings of loss, particularly in the wake of my young friend Wangchuk’s suicide.  Sometimes it is tamping down feelings of success, like those a good CT scan can bring.  Throughout, an attitude of equanimity seeks to find something good, precious, or just memorable in the moment.

Most practically, equanimity is about not getting angry.  Of course this means not expressing anger, but, more importantly, not feeling angry, not being angry.  There are always exceptions brought about by unique causal conditions and intentions.  Sometimes it is very important to be angry, to do something, or not, and then get over it.  But I believe that a permanent state of anger is likely to lead to more personal sickness and an earlier death.  It also strongly affects people around you as those anger effects ripple on through networks of social relationships…

The real underlying driver is personal transformation, to get as close to “enlightenment” as possible.  I don’t know what enlightenment is, so “it” is in quotes.  I may know it when I see it, or, more likely, I am seeing it all the time but not recognizing it.  In uncomplicated terms, the goal is a better me while simultaneously graciously negotiating the inevitable forced detachment from the things and, eventually, the people that have made me my self.

What I can do is share what I’ve learned about learning, which is to immerse yourself in the stuff you want to know about and watch for the synergistic patterns to emerge.  In this case, the “stuff” for emergent discovery is life and end-of-life experience.

Immersion is being mindful, creative, and committed when dealing with the ordinary affairs of life—the proverbial dishes.  It often means bringing some life-and-death issue to information overload and forced resolution as time moves along, such as whether to accept a new treatment.  New information is constantly streaming in.  Much is to be ignored, but some information is life-critical and not necessarily carrying a sign to that effect.  Immersion is in life, in the approaching end of life, and the reality of your condition and survivability, which are in constant flux.

I know I can reach beyond where I am, and the knowledge of terminality offers a very simple and easy-to-understand lesson on the preciousness of each moment and the meaning of the admonition “don’t waste time.”  The word “precious,” which I have used throughout this memoir, is preciously close to being a cliché.  Nevertheless, it is an excellent term for a grand body of spiritual discovery from many traditions that attention to the present reveals the whole in every moment.  The word evokes a jewel-like quality and brilliance, catching and displaying light in myriad twinkling patterns.  And that, indeed, is the quality of precious time.

I noticed such a precious moment recently in a late-autumn walk in the woods with my daughter Eliza and her dog Sola under a cloudless sky and noon-high sun.  A few late-blooming hardwoods painted near and distant woodscapes with splotches of color.  The forest floor was coated with brown and crackly dead leaves.  Except this morning they shone as pools of light, each and every leaf, creating a sea of rippling light that streamed out of a motley mass of fallen life.  Crackling with each step, we strode across a shimmering wooded sea.

I have walked the woods from the earliest years of my childhood but never before noticed the late fall sea of light.  Or knew that I noticed it.

The transforming effect of my terminal period is beginning to spread.  In my own experience, active equanimity was particularly noticeable in my Terminal Bardo reality.  That is, I could apply a nimble calmness most easily to the more difficult circumstances inside the new cancer-bubble normal, while in the regular-life normal, I had the usual range of conflicting emotional experiences about things clearly not so important.  Sometime in the early fall I became aware that equanimity had become a more prominent feature of my regular normal, and I continue to work on this all-important path of personal growth.  If not now, when?

I will need every possible psychological advantage to navigate more difficult days ahead.

More remarkable, I think, is the spread of some sort of transformative centeredness to those most immediately affected by my death.  This does not mean not living with grief as well as happiness, but it is an active engagement with the reality of our situation and the hard growth that requires.

I cannot tell you how to be centered any more than I can tell you how to be optimistic or pessimistic.  Nor can I tell you how I got to be centered, if I am.

What I can say is that I am more centered than I thought I would be, if I ever thought about it before.  With this memoir, I can show you what trying to live that attitude looks like from the inside.

Centered is what I would like to be when I die, and before.

 

Jeff Stamps: "Consciously living with dying"

Jeff with Finny, 8/29/10

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.

Preface

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

The diagnosis

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.

Beginner’s Mind

How did I feel when a dear friend tells me I am terminal?

Calm.

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 19^th, 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.

 

 

Jeff Stamps on Christopher Hitchens

About the same time that Christopher Hitchens, who died yesterday at 62, started writing about his engagement with the esophogeal cancer that killed him, Jeff Stamps began his memoir, "A Dangerous Experiment." Jeff was dealing with a different kind of cancer, in his case, pancreatic, but both men used their encounters with mortality (and the medical-industrial complex) to plunge into their thinking. I don't know what else Hitchens wrote about his ordeal that hasn't been published but Jeff left behind a whole manuscript, his last entry written about seven weeks before he died.

When I saw that Hitchens had died, I remembered this long passage from Jeff's book in which he responds to Hitchens's essays and takes a somewhat different view of the metaphors surrounding cancer and terminal illness than the Vaniety Fair writer. Please comment if you are so moved. These two men, as Jeff points out early in his memoir, had the benefit of knowing that the end was in sight, which, he felt, gave him a certain blinding clarity about life. Herewith, an excerpt from "A Dangerous Experiment:"

Cancer War

An unusually healthy man, I wake up one day as a terminal cancer patient. I have earlier described my encounter with the diagnosis and prognosis, and my swift movement to acceptance, seeing reality as it is as well as I can. A realistic and ever-updated view of my bodily condition is the prerequisite for responding well to a terminal time fraught with challenges and possibilities.

My memory of the terminal diagnosis contains no sense of passivity or victimization. I never think my body has let me down, nor do I feel punished for bad behavior somewhere along the line. Most importantly, anger and fear do not arise to swamp every other feeling and thought. I am very sure that a physical state of anger will be unlikely to help my body contain my cancer, which I say out loud—and repeatedly.

What does raise my antipathy is the WAR ON CANCER in all its multitudinous martial manifestations. I’ve been pushed unwillingly into boot camp for newly-diagnosed patients with the most feared form of disease. Exhortations come in every media message:

“Battle your cancer.”

“Fight for your life.”

“Wage war on the aggressor cancer.”

“You can beat this.”

“Have hope.”

“Win.”

I’ve never liked the fighting-cancer metaphors, but that was an intellectual dislike. Now it’s a personal dislike bordering on conviction. A battle cry and charge against my cancer would actually be dangerous, I think. This conventional wisdom is profoundly counterproductive, particularly to those wearing the terminal watch.

Why is the fighting state of mind so destructive? Unless fighting is your business, the sudden arousal to battle brings anxiety and fear. When the “dukes up” moment is over, you’re still anxious and afraid because the threat of death remains real.

Without even knowing much of the biology, lay wisdom has it that fight/flight states are designed for emergencies, meant to be effective only for so long. After a point, they begin to demand more and more of the body’s diminishing resources. I see all those fight or flight chemicals and neural pathways, evolved over millions of years, as overwhelming my system just when I need every available bodily player alert and mobilized to respond to the emergency that some of my cells have gone haywire.

The will to survive is not the same as the urge to fight.

My body’s wisdom is much deeper than my consciousness, or even my most subtle unconsciousness, and I’m unlikely to lead an effective fantasy army against the imagined cancer from my level. While my mind may think there is an escape hatch to a larger consciousness and some post-death continuity, the Jeff-specific body knows this is it. Corporality is on the line. My job at 30,000 feet is to give the body all the tools and support I can to help it survive as long as possible. My job on the ground is to keep my body healthy and to live well.

Under the right circumstances, fight is the right response. As a default state, always fighting is ultimately fatal. You can never win.

The now forty-year-old War on Cancer, an Edward Kennedy-Richard Nixon strange-bedfellows concoction, is a poor enough metaphor to use for mobilizing society’s resources to rid humanity of a scourge. The phrase was coined during an actual protracted losing war (Vietnam) and when belief in progressive mechanistic science was at its zenith. Curing cancer was the next frontier to the just-concluded moon walk. We can do it, they said.

We are now fighting endless wars against endless foes, from the long-running War on Poverty to the gravely misunderstood War on Terror and its self-perpetuating state of fear. Meanwhile, very real wars are being fought all over the globe that are not likely to end with clear winners.

None of this fighting has gone very well, including the war on cancer. World War II was the last “Great War” with a decisive victory in classical terms. Even then, it took the horrific new-age atomic bomb to halt the war in the Pacific. Nuclear fear took hold. New fears have been added over the years. Few fears have been taken away.

Does Optimism Matter?

In October 2010, a guest on Jon Stewart’s Daily Show, the insightful “news” program that manages to peek through the media murk, mentions a study purporting to show that attitude has no impact on cancer outcomes. This 2007 study and the many major media reports on it dominate searches around the subject of attitude and cancer therapy results. Not surprisingly, it draws fire from many in the field who passionately believe that optimism and a positive attitude lead to the winners who survive. For the more dispassionately scientific, the data just proves again that mind plays no role in the progression of an essentially biological process.

This University of Pennsylvania five-year research project studied 1000 patients with head and neck cancer receiving innovative radiation trials. According to the authors, its results showed that emotional state does not affect clinical outcome. Only one measurement was taken for the study, a single attitude data point constructed from six questions along the lines of “I feel sad;” “I feel nervous;” and “I worry about dying.” Not a strong case against the anecdotal evidence many offer of positive results through positive thinking. However, many anecdotes do not an assumption prove either. Science is weak on the effect of attitude on the course of disease, but rife with stories.

Missing from the 2007 optimist-pessimist attitude study are quality-of-life factors. Back in boot camp, the terminal patient hears early on about the life-quality/treatment-side-effect tradeoff. It’s like being read your rights before interrogation. Then you are moved right along to discussing treatment options and how to mitigate side effects. You grab whatever quality of life you can during the long campaign of many battles, or live depressed because you feel you have given up, or been given up on, when treatment stops.

It’s a little different if you’re short-term terminal [like me]. Medical science offers no cure, only some time. Therapies are palliative, not curative. The goal is “maximum time with maximum quality of life.” Great goal, but as in so many things, the catch is in the very logic of the mission since time and quality are so often a direct trade-off. Time in treatment is not quality time. Side effects rarely add to quality of life, although they can occasionally. So think positively, but don’t think there is a cure, short of a miracle.

 

But is pure positivity a good thing?

It seems that patients are generally classified as “optimistic” or “pessimistic,” sometimes placed on a slider scale between plus-minus poles. The optimists fight for survival; pessimists give up. In medical terms, optimistic patients opt for treatments that hold out the hope of survival, or more time. They aggressively pursue options even as first-line, second-line, and later treatments fail. The truly forceful fighters will seek alternatives like risky trials or go outside the medical system to pursue cures (one Stage III prostate cancer patient strongly recommended a raw food diet for me although I have to work to keep my weight up). Anything to beat death.

This classification exists on both sides of the medical divide, by doctors and providers and by patients and families. Culture plays a huge role in the language surrounding terminal disease and its likely progression, as we frame options in do-or-die sound bites.

Doctor and patient collude in the presumption that death is the enemy. Indeed, it’s the doctor’s mission: defeat death. Scientific American’s lead article in its 2010 theme issue—“The End. Or Is It?”—is “Cheating Death: How Far Science Can Go.” Portraying science as extending life by deceiving death is not a good message in a world rife with lies. Despite its provocative title, none of the articles even hints at a possible afterlife, even for believing patients. Oh, sorry, I almost forgot. There was one afterlife article—on the stages of bodily decomposition, “Dust to Dust: The brief, eventual afterlife of a human corpse.” Hardly a trip to heaven or nirvana.

Death is the enemy, so we marshal our forces to defeat it. This thinking largely bypasses questions of quality of life or what’s important to you, the dying patient, or how you might want to pass your final weeks, days, and minutes. These questions of course are eventually unavoidable, but typically occur to patients too late to change much about the quality of the terminal life, except, possibly, the small bit left.

Yet when we’re not at war with it, we know death is part of life, not some outside force or being. By externalizing it, robed now with cancer tumors, we detach the cancer and make it “other,” the enemy. This alien makes allies of doctor and patient as they link arms to defeat the common foe.

There is something I know about my tumors. This cancer is mine. It didn’t come from the outside, like a virus. Yes, many internal and external factors contributed to the cancer’s start and growth to the point of being a self-replicating part of my body. But these are my cells, and it doesn’t serve me well to alienate them unnecessarily.

 

I’m not a good story to tell of fighting the good fight. Or at least my story is told differently. To bring the fight against cancer and the workings of optimism into view I need to borrow someone else’s story. As I start on this part of the memoir, Jessica hands me the new issue of Vanity Fair. Timing is everything.

Hitchens on Terminality

In the November 2010 issue, Christopher Hitchens, the famous English-American author, well-known and often-confrontational commentator, and passionate “new atheist,” has written his third commentary on being terminal. Online, I quickly find the first two.

I don’t mean to pick on this brave writer, but to offer a patient view other than my own with which to draw similarities and contrasts about terminality and treatments. This all-important patient view sits across from the even more important doctor view that ultimately drives the medical system, the subject of the next chapter.

Hitchens’s story, so briefly encapsulated in three short columns, illustrates the war metaphor and optimism in action, and adds a particular strain of scientifically-grounded anti-theism that reads like a religion. He is Everyman and woman because we all hold our cancer via some metaphor, experience it with an attitude, and have an orientation to the meaning and impact of death, even if it is dust to dust.

Topic of Cancer

One June morning Hitchens, whose new best-seller, Hitch-22, had just come out, awakened to “feeling as if I were actually shackled to my own corpse. The whole cave of my chest and thorax seemed to have been hollowed out and then refilled with slow-drying cement.” This led to emergency procedures and a quick recommendation to go immediately to an oncologist. However, Hitch had other plans, including taping The Daily Show with Jon Stewart and then to an Upper East Side conversation with Salman Rushdie about his new book. He made it to both, vomiting backstage before each appearance. Then Hitchens looks at what he’s facing.

We hear about Hitch the terminal patient from him. He is a contributing editor at Vanity Fair, and in September he begins a series of commentaries about his first-person patient experience. “Topic of Cancer” is the initial installment, describing the events around his diagnosis. Each terminal, usually metastatic, cancer diagnosis is its own initiation, as unique as the initiate, and Hitchens is a great writer.

He speaks of “sick country,” of which he is suddenly an unwilling citizen, an egalitarian welcoming new land with its own language and where there is “almost no talk of sex.” In his “local Tumorville,” results developed over a week located the main tumor as cancer of the esophagus with metastases. “The alien had colonized a bit of my lung as well as quite a bit of my lymph node.” His 79-year-old father had died swiftly of this cancer; Hitch is 61.

Hitchens gives his take on the Kubler-Ross stages (as I have done upon diagnosis and its aftermath). Denial, he reports as brief, but he does have a “gnawing sense of waste.” “Rage would be beside the point,” he says, but bargaining might contain “a loophole.” Then he starts with the wager: the many personal costs associated with treatments against the vaguely promised probabilities of more life time. This points straight to “one of the most appealing clichés in our language…battling cancer.”

“You’ve heard it all right. People don’t have cancer; they are reported to be battling cancer. No well-wisher omits the combative image: You can beat this. It’s even in obituaries for cancer losers, as if you might reasonably say of someone that they died after a long and brave struggle with mortality. You don’t hear it about long-term sufferers from heart disease or kidney failure.”

He loves “the imagery of struggle.” So he struggles, but reports with a cold eye that it doesn’t feel like a noble soldier defending battle ramparts when they bring “a bag of poison and plug it into your arm. … You feel swamped with passivity and impotence; dissolving in powerlessness like a sugar lump in water.” He sums up with the resolve “to resist bodily as best I can, even if only passively, and to seek the most advanced advice.” His ending is chilling as he describes his disease as “the blind emotionless alien, cheered on by some who have long wished me ill.”

Unanswerable Prayers

Hitchen’s October installment, “Unanswerable Prayers,” opens with a scientifically confused image of his cancer, quite clearly driven by his understandable distaste for what has happened to him.

“When I described the tumor in my esophagus as a ‘blind, emotionless alien,’ I suppose that even I couldn’t help awarding it some of the qualities of a living thing. This at least I know to be a mistake: an instance of the ‘pathetic fallacy’ (angry cloud, proud mountain, presumptuous little Beaujolais) by which we ascribe animate qualities to inanimate phenomena. To exist, a cancer needs a living organism, but it cannot ever become a living organism. Its whole malice—there I go again—lies in the fact that the 'best' it can do is to die with its host. Either that or its host will find the measures with which to extirpate and outlive it.”

Even as his most reasonable self in regard to the nature of the enemy, Hitchens describes action by an external agent, a fatal symbiotic parasite that consumes its host. Most surprising is his imputation of cancer as inanimate, like a rock, rather than a mass of living things operating at a simpler level, namely cells. Not just any cells, but his cells.

Hitchens, the renowned atheist, has not only externalized the bodily enemy cancer, but has transmuted it from living to non-living status. This is truly some sort of denial about the cancer reality, which requires using accurate, non-metaphorical language. Battling an outside, powerful, but “blind emotionless alien,” force distorts choices. Only in your mind is cancer an outsider.

However, Hitchens is after another enemy in his second commentary, all those wish him ill for his outspoken atheism. Actually, he is also after those kindly praying for him because they, too, are among all those deluded by religious explanations for everything based on Holy Scriptures of their fill-in-the-blank faith. After running through his basic arguments against the spiritually ensnared (one reckons for the umpteenth time), he wraps with a brash promise: “I shall continue to write polemics against religious delusions, at least until it’s hello darkness my old friend.”

His “old friend” is as close as he gets to the afterlife. It is a pithy summation of the dust-to-dust view—we just slip off into a good deep sleep, never to awake. A presumption, to be sure, but in any case the modern medical system is not well set up for just “slipping off.”

Still, like all of us deported to this foreign land that we did not seek, Hitchens is also preparing to die. Any patient can relate to his portrayal of “lawyers in the morning and doctors in the afternoon.” He describes the feeling we have of the “distinctly bizarre way of ‘living’… in a double frame of mind.” In our house, we call it “two normals.”

He expends great effort dismissing the value of prayer: “Praying for what?” he asks. He trots out a well-reported 2006 “Study of the Therapeutic Effects of Intercessory Prayer” that found no correlation between the number and frequency of prayer and improved chances for those being prayed for. Indeed, there was a slight negative correlation, the study concluded, which the researchers ascribed to patients’ disappointment in letting down those who prayed for them.

While not a fan of prayer, Hitchens does reflect on how he now understands the importance of morale, and can already see the pernicious effects of flattering well-wishers saying, “if anyone can beat this, you can;” “cancer has no chance against someone like you.” He is left with a secular feeling that “If I check out, I’ll be letting all these comrades down.”

Since we all know in the back of our minds that we will die, holding up the sword of certain victory will surely prove wearying for intrepid optimists.

Tumortown

“Tumortown,” Hitchens’s November’s installment, coincides with this moment in my memoir writing. Here he seems to have finally named his new environment and offers advice from his medical journey. He begins with a passage from John Updike’s 1971 Rabbit Redux, where the main character believes that a cure for “the big C” is just around the corner and thus the side-effect tradeoffs are worth taking if there is a chance of more life time. He is today’s paradigmatic optimist.

Taking note of the strange terminology of the war on cancer and the exhortations to battle, Hitchens “can’t shake the feeling that it is the cancer that is making war on me. The dread with which it is discussed—‘the big C’—is still almost superstitious. So is the ever whispered hope of a new treatment or cure.”

Alien enemy. Deep fear. Secular superstition. Hope. These are elements of an optimistic patient archetype—and brew for a very bumpy journey, it seems to me.

Like all of us with terminal prognoses, Hitchens faces a deluge of advice, truly information overload riddled with unfamiliar languages. The pull quote for this section is telling: “In Tumortown you sometimes feel that you may expire from sheer advice.” Actually, this is not metaphor: the advice you take leads to choices you make that are indeed bets on matters of life and death.

After dismissing essentially all alternative medical approaches, which he epitomizes, so to speak, as “granulated essence of the peach pit,” Hitchens turns to “the world of sanity and modernity.” Here he is plagued by well-informed people insisting that there is one greatest doctor or clinic, which of course are located all over the place and can’t possibly all be visited. Even in modernity, “the citizens of Tumortown are forever assailed with cures, and rumors of cures.” And even Hitch can’t resist trying one far-off fabled clinic with predictably disappointing results.

At this point his medical experience is tied to oncology. It is “an exhilarating and melancholy time to have a cancer like mine,” he says. This is a good generalization of the ups-downs built into the pursuit of hope. The upside is the wonders of today’s chemo cocktails and other technologies, while the downside is the feeling that a cure lies just around the corner, but too late for me.

This zigzag may repeat multiple times within the optimistic journey. Hitchens recounts one such period, beginning when he was “hugely excited” by a new gene-engineered immunotherapy protocol from National Cancer Institute researchers designed to charge up the immune system to resist the cancer. All he had to do to qualify was have the tumor express a certain protein, which it did, and have immune cells with a particular molecule held by half of those with European or Caucasian genes. Unfortunately, “my immune cells declined to identify as sufficiently ‘Caucasian’ … and I can’t forget the feeling of flatness that I experienced when I received the news.”

Another episode the same week sets off fifty emails from friends triggered by a 60 Minutes segment on an esophageal cancer patient treated with experimental “tissue engineering.” This approach uses stem cells to grow parts of a new esophagus. Excited, he calls his friend Francis Collins, who gently but firmly tells him it would not work for metastatic cancer.

One of the ironies of Hitchens’s life as a combative atheist is that his most scientifically advanced advisor is a sometime debate partner, Francis—renowned scientist, the government’s leader in genome sequencing, and an avowed Christian. Now the director of the National Institutes of Health, Collins is truly a remarkable man, perhaps the most prominent bridge between science and religion, and Hitchens is fortunate to have him as a trusted counselor. Where they agree is on the “maniacs” who oppose stem-cell research on discarded embryos. Indeed, Hitch ends this essay with an invitation: if you want to join the “war” against cancer, “then join the battle against their lethal stupidity.”

But it is how his personal story ends that matters. Hitchens’ response to being turned down for a number of trials is a determined “best perhaps to get these false hopes behind one quickly.” Yet it is depressing. “Analyzing the blues that I developed during that lousy seven days, I discovered I felt cheated as well as disappointed.” Apparently he felt he hadn’t fulfilled Horace Mann’s admonition—“Be ashamed to die until you have won some victory for humanity” (motto of Antioch College, where Mann was the first president)—by not qualifying for experimental drugs or surgeries.

“So I have to trudge on with the chemo routine, augmented if it proves worthwhile by radiation and perhaps the much-discussed CyberKnife for a surgical intervention; both of these things near-miraculous when compared with the recent past.”

This patient, in awe of science and swimming in the best advice available, nevertheless doesn’t really understand what his options are. CyberKnife, with which I am intimately acquainted, is a relatively new method for delivering highly-concentrated, highly-precise radiation, not a surgical technique. Nothing gets cut. For a patient trying to juggle lots of confusing information, this is understandable. What is surprising is that his Vanity Fair editors and fact-checkers missed this glaring and misleading error.

 

I have only a fragment of Hitchens’s experience in his writing, but from my insider terminal viewpoint it appears that Hitchens isn’t really paying attention to his immediate Stage IV future. Since a number of his organs show metastases, he normally wouldn’t qualify for radiation, much less surgery, so perhaps his confusion over options is moot. We don’t know the outcome of his chemo, but if the first-line treatment had successfully halted the cancer, he probably would have reported it here. My guess is that he is irretrievably terminal, like me.

It’s possible that Hitchens is caught a bit in the depression that lies in the gap between negotiation and acceptance. I anticipate that he will or has reached acceptance, which he dismissed as “bliss,” and reflect on this stage in a future essay. With acceptance, he will be in a more settled frame of mind as he continues his ever-cogent and stimulating commentary on his approach to dying and death.

 

To repeat what I said earlier, this is a brave man, putting his terminal self out in public. It is, I’ve learned, a rare thing to do. Yet, as everyone inevitably reaches this point, many people appreciate the opportunity to see how others manage a diagnosis they cannot imagine receiving.

We all become terminal patients, but this is only part of the story. Doctors anchor the other part of the dynamic that drives the medical machine in the last stages of life. They, too, will become terminal, and are thus best positioned to bridge the divide.

 

Engage with Grace as Jeff did - year 4 - #engagewithgrace

Jeff Stamps, age 15, US Junior Nationals Alpine Competition

For the fourth year running, I'm one of hundreds of bloggers staging the Engage with Grace rally to encourage people to think about end-of-life issues. Much has happened in our family since I started participating, including learning the (still) shocking news in May 2010 that one of our central family members -- Jeff Stamps -- was going to die. And then he did on June 11, 2011.

In the course of the 13 months from Jeff's diagnosis of Stage IV pancreatic cancer to his death, we talked about the five questions below quite frankly both with each other and with friends.

By the time Jeff was in the final moments approaching death (in his case, a relatively short period during which he was no longer able to communicate -- about 36 hours in total), I was very clear about his wishes, right down to which room he wanted to die in, what music he wanted playing, which candles I should burn from our collection (Jeff loved candles and lit them every night), and whom he wanted nearby. He even wrote a song for our grandchildren that was sung at his funeral.

As deaths go, Jeff's was a magnificent one. Preparation was everything. Not everyone has the good fortune, if you can call it that, that we did. His diagnosis was unequivocal and medicine had very little to offer (though his willingness to endure treatment, including chemo and very high-tech radiation, may have extended his life). He also was a great and inspiring realist, as his eulogists all said. Here's what our friend Ben Taylor told the Boston Globe: “He decided almost from the moment he received this diagnosis that he wasn’t going to be angry, bitter, or depressed. He was going to accept it and make the most of the time he had left. He showed us all how to die and was an inspiration to every one of us.’’

Since Jeff died, I've talked to many others who've lost spouses (and parents, children, relatives, dear friends and colleagues). Many loved ones died suddenly, including those with terminal cancer where the patient and family had not been clearly told that death could be come at any moment. Some admit they were in denial. And we all know cases where someone didn't want to know that their illness was terminal. Because sudden death is so common ("she went upstairs to get a book and had an aneurysm;" "he had a massive heart attack while walking to work;" etc), we need to bring death into our line of sight, into the middle of our conversations.

For all the blather in our society about "death and dying," I've experienced very little natural conversation about it. We're still wincing and avoiding the topic. Try listening for it in the course of a day, the course of a week, and see how often it comes up. Let's bring it up.

Meanwhile, read on for the official text of the Engage with Grace blog rally, includuing the five critical questions:

 

Occupy With Grace

Once again, this Thanksgiving we are grateful to all the people who keep this mission alive day after day: to ensure that each and every one of us understands, communicates, and has honored their end of life wishes.

Seems almost more fitting than usual this year – the year of making change happen. 2011 gave us the Arab Spring – people on the ground using social media to organize a real political revolution. And now – love it or hate it – it’s the Occupy Wall Street movement that’s got people talking.

Smart people (like our good friend Susannah Fox) have made the point that unlike those political and economic movements, our mission isn’t an issue we need to raise our fists about…it’s an issue we have the luxury of being able to hold hands about.

It’s a mission that’s driven by all the personal stories we’ve heard of people who’ve seen their loved ones suffer unnecessarily at the end of their lives.
It’s driven by that ripping-off-the-band-aid feeling of relief you get when you’ve finally broached the subject of end of life wishes with your family, free from the burden of just not knowing what they’d want for themselves, and knowing you could advocate for these wishes if your loved one weren’t able to speak up for themselves.

And it’s driven by knowing that this is a conversation that needs to happen early, and often. One of the greatest gifts you can give the ones you love is making sure you’re all on the same page. In the words of the amazing Atul Gawande – you only die once! Die the way you want. Make sure your loved ones get that same gift. And there is a way to engage in this topic with grace…

Here are the five questions – read them, consider them, answer them (you can securely save your answers the Engage with Grace site, www.engagewithgrace.org), share your answers with your loved ones. It doesn’t matter what your answers are, it just matters that you know them for yourself, and for your loved ones. And they for you.

 

Possible advance for treating pancreatic cancer

Re: an issue close to the heart of our family, it's always too early to tell with new drugs that attempt to stem the vile disease of pancreatic cancer (or any other intractable cancer) but today's Boston Globe leads with a new approach - going after the "microenvironment," where the cells live rather than going after the cells directly. In the case of pancreatic cancer, the cancer cells themselves are nearly impenetrable (they're encased in fibrous tissue) so researchers have been trying to find various tunneling mechanisms to get to the source of cell proliferation. I'm no doctor and no scientist so please go back to the original - but here are the key grafs:

At Infinity Pharmaceuticals, researchers have developed a pancreatic cancer drug that inhibits signaling between the cancer cell and its microenvironment, thinning a fibrous network of tissue that helps shield cancer cells from drugs.

Data from a small safety trial presented at the American Society of Clinical Oncology this year showed preliminary signs that the drug, in combination with the chemotherapy currently used to treat the cancer, called gemcitabine, could shrink tumors.

 

For the "Mondays at 4" group

 

 

It's impossible to know the right thing to do after someone close dies. We try all kinds of things. Walking. Talking. Weeping. And then there's something unexpected.

Dana-Farber Cancer Institute in Boston offers grief support groups for families of patients who've died. My husband was only treated briefly at Dana-Farber. Treated is even too strong a word. Two months before he died, he entered a small clinical trial in which an old anti-malarial, hydroxycholoroquine, was being used to stem pancreatic cancer. A very long-shot. Very. And by the time he started the trial, eight weeks before he died, he was already very ill. But, being Jeff Stamps, he thought it might be helpful for someone else ...

He made it through two rounds of the drug before he was too sick to continue. So our entire tenure at Dana-Farber was only one month long (as compared with the 13 months of excellent treatment he got a the hospital across the way, Beth Israel Deaconess).

A month or so after Jeff died, I got a very nice letter, a helpful booklet, and an invitation in the mail. Dana-Farber was holding a grief support session for people who'd recently lost family members. I went and there found about a dozen others, most of whom, like me, had lost their mates. The social worker asked if any of us would be interested in joining a regular group, which I did about a month later.

That group, led by Sue Morris, Director of Bereavement Services at Dana-Farber and author of Overcoming Grief, just concluded after six sessions. There were nine of us in all, six women, three men, most long hetero marriages, one gay couple, all of us not wanting to be there at all but all of us returning week after week. I raced up from weekends in New York on at least three of the weeks, raced because I couldn't miss it.

What we knew together was what no one wants to really understand because you can't until you're in it. And there's no way to hurry out of it. We cried together, looked at the pictures of the mates who'd died, nodded until our necks hurt when someone said something that was barely a fragment of a sentence because the rest of us knew where that string of words was headed.

I was surprised that Dana-Farber, where I barely recognized a soul, offered these sessions and that Beth Israel, where I knew and had become friends with many people, did not. Daughter #1 made an interesting observation: the death rate at Dana-Farber, being a cancer hospital, was likely a helluva lot higher than at the academic medical center across the street. I recently came across a statistic that only 56% of people with cancer survive. It's a crazy stat since 100% of us will die -- and what does 56% survival mean anyway? But the point remains -- I'm pretty certain that more patients die at a cancer center than do at a regular old hospital.

A few weeks ago, one among us, Sue Robertson, above, a classical pianist and a writer, said that she hadn't been able to play since her husband had died. I understood. I haven't been able to write since mine died (I know, I know, this is writing but not the kind of writing I want to be doing - and I know I'll get there). And in that session, she decided to see if she could play at the hospital. Which she did. Three times now the custodians at Dana-Farber have rolled out their grand piano, including this past Monday, when Sue played before our last session. Most of us were there to listen. Many of us (ahem) cried.

Beautiful... and thank you, Sue, Barbara, Mary Ann, Dagmar, Doug, Margaret, Jim, James, and our counsellor, Sue. Well done, Dana-Farber. I'm really grateful to "you" for the weeks of support...

They even comped our parking tickets.

 

 

 

The way to do it: "I waited to write"

A little over a year ago, I received an unexpected package in the mail from someone I barely knew. Amy Reece had heard about our situation and her impulse was to send a gift, a warm and snugly gift, a creamy blue pashmina which I wore today. Since then, there have been many gifts of kindness from people we know well, some whom we barely know, and some whom we hadn't heard from in years. One such came through last week, a letter from Alexandar Randall V, whom we first met in the 1970s and whom we haven't seen since the late 1990s. With his permission, I'm excerpting the letter, omitting all the truly personal material, including many observations Alex has about Jeff and about Jeff's and my life together. I'm posting the letter for a simple reason. It's an example of what helps after someone dies, in this case a little more than four months after my spouse has died.

Thank you, Alex. (NB: Alex is often credited with having conducted the first act of ecommerce through the Boston Computer Exchange, the very early bulletin board system that he started with his wife, Cameron--"Camie," see below--Hall, who died in 1998.)

Dear Jessica:

I waited to write. When my wife Camie died, it seemed that everyone had words of condolences and joined my grief for the few days immediately after her passing. Yet I was still mourning weeks later and by then I was all alone. So I waited to write when the throng has finished sharing your grief – so I could be here for you when you are more alone...

...I observed when Camie died that there was no one left who shared our mutual stories. There was no one with whom I could say “remember that day in Spain at the Sherry festival” and have her nod and remind me of the rhythm of the drummer in the dances. Or “Remember when we were still doing the business in the living room…” and have her remember the buy and sell cards.

Because we were together 24 hours a day at work and at home, our whole history was a shared history. My deepest loss as the loss of the mutual memory, the shared stories. There is no one else who shared it all and with her, I felt as if my memories had been removed. I lost my stories when I lost her. I can remember but there is no one with whom to share the memories. I assume you are experiencing just such a loss now....

Someone came to me after Camie died and said “She has given you a new life. You may not have asked for it but you have the gift of a new life.”

Jeff has given you a new life. You may not have asked for it, but you got it! You will have new adventures, new projects, new working partners and more. It may not have been your life plan, but it is now.

I send you deepest condolences on the loss of Jeff and I wish you all the best as you explore the new life upon which you have embarked.

If you need a vacation sometime, please make plans to come to our guest cottage and perhaps we can roll you into a special presentation at the University of the Virgin Islands.

May he rest in peace and may you thrive in your new endeavors. Godspeed!

Alexander Randall 5th
/sig/

Dr. Walsh: Get your PSA test, fellows

If you're a man - or if you care about men, then you must be following the current controversy over whether men should be regularly screened for rising PSA levels. The US Preventive Services Task Force, whose membership can be found here and which notably has no urologists on it, has recommended that healthy men no longer receive the blood test that measures the prostate specific antigen.

Last night, I had the chance to talk with Dr. Patrick Walsh, who is among the handful of most famous urologists in the world, and whose book, Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, is the go-to resource for any man with prostate cancer. Read up here for Dr. Walsh's contributions to prostate cancer detection and the perfection of nerve-sparing surgical techniques that have vastly improved outcomes for men undergoing prostatectomies.

We first met Dr. Walsh two-and-a-half years ago when my husband was diagnosed with Stage 2A prostate cancer, found as a result of a suddenly rising PSA. Thanks to our friend, Dr. Tom Lamont, who introduced us to Dr. Walsh (they both have served on the editorial board of New England Journal of Medicine), we were able to get detailed advice from Dr. Walsh at that time. (Yes, for those of you following our family's saga, my husband had prostate cancer a year before he was diagnosed with pancreatic cancer.) Just as one tiny example of Dr. Walsh's influence: Dr. Andrew Wagner, the urologist at Beth Israel Deaconess Hospital in Boston who operated on my husband, was trained in Dr. Walsh's lab.

But I'd never met Dr. Walsh face-to-face until last night and so was very pleased to be able to talk to him at a gala this weekend honoring Dr. Lamont's 40 years of contributions to medicine. That tribute deserves a post of its own but suffice to say when 280 people show up from around the world to honor a single doctor, then you know that person has had quite an effect on medicine, in Tom Lamont's case the field of gastroenterology. I am extremely lucky to count Tom and his wife Emily Lamont as among my closest friends.

I digress. As soon as I saw Dr. Walsh last night, I asked him his opinion about the PSA controversy. He was unequivocal. Men should continue to have their PSAs monitored. Here's what he said: "29,000 American men's lives were saved this year because they had their PSAs monitored." He's a urologist. He's been treating prostate cancer for decades. He's now retired so has no vested personal interest in bringing more people into his own practice.

And so, men friends, before you cavalierly forego having your PSA checked, listen to what someone who's been working in the field for his entire career has to say. We don't have any data on how much research the panel saying to skip PSA tests actually did, how detailed the data was that they were looking at, how statistically accurate it was, how trained they were to make their evaluation, and what other factors might have been influencing their decisions.

Having just endured a family member's death from another, albeit incurable, cancer, this is not trivial stuff. As yet another doctor friend told us when my husband was considering whether to have his prostate removed, "You don't want to die from prostate cancer." It's a very difficult cancer to endure. Especially when it's preventable.

 

How death ripples

After "The book of life," my post of yesterday, I received a long and touching message from Ramana Rao. Ramana and my husband, Jeff Stamps, worked closely on developing OrgScope, software that visualizes and analyzes organizations in unique ways. I'm not going to talk about the software here other than to say that Ramana is the developer of StarTree, the hyperbolic viewer, the underlying software that made it possible for Jeff to envision and design OrgScope (working with our friends at Prodex). But all of that is really a (very) different post.

As has been the case with many millions of us, the death of Steve Jobs unsettled Ramana and his colleagues known as the Enterprise Irregulars. Scrolling down the list at that link, I recognize a few names and faces; indeed Ramana has introduced us to a few of this "diverse group of practitioners, consultants, investors, journalists, analysts and full time bloggers who share a common passion -  enterprise technology and its application to business in the 21st century."

So...with Ramana's permision, I'm posting his email. So thoughtful, so touching, just the kind of email one in my situation wants to receive. Thank you, Ramana.

 

Hi Jessica,

I've been thinking of you many times since that wonderful visit in July.  I've had the program from Jeff's memorial sitting next to my keyboard on my home computer and I smile every time I look at him smiling on the mountain top (can you send me that picture in digital form?).   I noticed you had come through for the Saybrook event and was sorry that I only noticed after it was over.  I would have come and perhaps you can send me what you shared.

I started to write this message last night as I considered how the outpouring on Jobs may be perturbing your own emotional streams. And this morning, I see your book of life post and from the face of it would trust that you are finding peace in your meditations.   Are you?

I wanted to share the below I wrote this morning because Jeff and others are in my thoughts right now too.    It was written in the context of an email group that I'm in, a very trusted set of people who are professionals in the Enterprise IT space.  There was discussion there of whether there was undue deification or such going on, and I think there is some such but par for media & populist events in any case.

There are thoughts I have about Jeff.  He was indeed special in an essential way to me.   Yes certainly enthusiasm and intensity and intelligence, but combined in a way that seemed to impel him to carve
out the path of what he saw and of what he knew that it could mean.  I find that inspiring.   He still lives for me.

Ramana

------------

The day of Jobs' death, before the news had hit, I was walking by the Embarcadero Center 2, where Peter Rip, my VC, had worked.  I was thinking how much I still missed him, almost a year since he died,
particularly these last months as I am about and working ideas for next.  The question "what would Peter do?" was in mind so often, I had the thought of getting a wristband.  Peter, for me, was such the perfect blend of intelligent skepticism and concise and gentle guidance: rather than sapping energy he shined or sometimes just simply smiled on a path forward.

A few hours after the news, as I was driving to pick up my daughter, I was amazed by how sad I felt, much more than I would have thought, as many others have commented since.  So much has been written on his achievements since his resignation as CEO, that I was jesting that Jobs was such a genius in image-making that he had managed to go to his own memorial.  But that was not exactly correct in several ways. Certainly we'd seen the public commemorating of the achievements and knew how truly inspiring he was to so many, but there was still a limiting of the vocal range of emotion and of the whole story as would have to wait for death and time.

As I headed up the steep slope of Pine St, I was considering how we could be flattened and joined by the death of one man.  Really it's pretty hard to be novel here.  I'm thinking the hard-not-to-think-of Donne's no man is an island and strangely enough, Lost.  In current terms, it's the small world created by super-connectors not just on the network of people but on the network of ideas and passions.  Who else (not what else) would have been as widely unifying at the moment? Was there anybody since Kennedy (I didn't experience that)?  It's the powerful intersection of major figures and primal ideas.

Yet we all have people whose deaths are important to us at various levels of eminence and distance.  The image that came to me was of the pantheon of deities in Hinduism with temples on every hill in India and shrines under banyan tree at village center, and from there a garland of flowers hanging around the photographs of the celebrated family member and the daily puja.  A ringing of bells, burning of incense, an offering of fruit and sweets to the chosen deity and the deceased elder.  I was always an outsider as I watched but I also felt a deep sense of respect for the ritual, that it wasn't simplistic or pointless.

It is not about Idol worshiping nor about idolizing the deceased, because the theism of Hinduism is certainly more complex and people in a family and a village know the full story of their elders.  It is an
essential trait of humanity to be able to worship ideas.  And it is about our need to be connected to the chain of being through our feelings and the universe that engenders such.  Awe, beauty, compassion, love, grace, kindness.

Among the reasons why I could not or still can not imagine joining any of the major religion is not that they are all wrong, but rather that several seem right when you drop some details.

In the last couple of years, I've been moved by a string of deaths of people close or significant to me. My wife's cousin Steve the day after Steve, her father a few months ago, my wife's grandparents (who I knew very well), Peter, Jeff Stamps, Kris Olson, Rajeev Motwani, an aunt in India, an uncle that was especially adoring when we were small children---all of these I think very likely have fewer transgressions than those reported on Jobs.

In such passings, there is a forgiving, not so much of sins, but of details.  Not so much to sanction or even forget as if to allow the deceased to ascend, but rather to heighten what we would keep of them
with us.

It is a deification, a lifting of some essence, a forever-ness from the passing.