A hard look at the landscape of death and dying

In  2012, I got a stomach ache that turned out to be pancreatic cancer, a diagnosis that mostly means almost certain death.  Pancreatic is the deadliest of cancers.  Almost nobody survives.  Ninety-five % of patients die in the first five years.  Most pancreatic patients die within six months; most of the rest, in the first year. It’s all but guaranteed.  “Cure” is not a word.

 After surgery, when I had the strength, I crawled into a barber chair for a haircut.  The ghost looking back at me from the oversized mirror said with silent certainty that I would soon be dead.  The doctors said pretty much the same thing.

So I geared up for death.  But then I didn’t die.  Not yet.  In a very gray world of twilight and fog, I was convinced I was going someplace I’d’ never been and was not coming back.  If you’ve never been there, the sudden face of certain death is hard – impossible – to convey.  Like war, if you’ve been there you know.  If not, you may never know until death comes for you, if even then.  

On your way out, you’re probably in for intense pain and nausea; mental fog; impaired speech, hearing, and vision; and severe neuropathy.   Systems fail, organs shut down.  Chemotherapy might help or it might make things worse, much worse, and still leads directly to the grave.  No telling how much time or how much pain & suffering is waiting.

These lyrics from Ralph Stanley’s song “O Death” paint the picture: 

Well what is this that I can’t see

With icy hands takin’ hold of me

I’ll fix your feet so you can’t walk, 

I’ll lock your jaw til you can’t talk,

I’ll close your eyes so you can’t see

This very hour come and go with me

This cancer ripped away the curtain of my denials, rationalizations, & delusions.

For a while.  Living then with sure death, and now waiting for the axe to fall, demands an adjustment.   It forces a certain enduring change in perspective, balancing probability against possibility, with a certain unending watchfulness.

One voice says, Yes.  Yes, you. You. Are. Done.  It Is. Over.  Or will be, soon. But another day dawns, and you forget to remember.  

Then relentless day-following-day begins to seem real and normal again.  Ordinary.  Everyday.

You can’t forget for long, and don’t get much say in the matter.  So you live on, a little ghostlike. Balancing possibility against probability, the exceptions against facts and statistics. Sometimes railing, sometimes resigned or philosophical. Not exactly immortal Gloom-&-Doom, and definitely not hysterical baseless optimism.  Limbo.

This is life-in-death, or death-in-life.  After you’ve gone far down and come up again, at least for a while, you wait for the other shoe to drop.  You are permanently charred, blackened like a shock or burn victim.  So you wait and watch, and stay wary. 

For me personally, some amazing good luck was mixed with the bad luck.   My good luck started with early detection, which in pancreatic cancer is very rare.  Most patients are diagnosed only in advanced stages, when the tumor has grown through the wall of the pancreas, or when often the tumor has wrapped around a major blood vessel, reached the lymph nodes or blood stream, and spread.  These patients can’t get surgery, and chemo and radiation become pointless because the cancer has spread.

I count it as good luck that a young inexperienced surgeon inadvertently spurred me to collect my records from my hospital bed and seek out a highly skilled & specialized senior surgeon.  Nothing beats a good scare.

Finally, I had good luck with an excellent and dedicated cancer care team managing such treatment concerns as drug combinations, dosages, and timing.  I was also lucky to have withstood extensive and intense chemotherapy. 

MEETING DEATH AND DECLINE HEAD-ON

There is no problem too big to ignore until the crisis arrives like a major hurricane, when it’s really too late.  The human impulse is to deny. You know there is no telling how much time is left.  With everything in limbo there comes a strange liberation – you no longer need to climb Everest or win the Presidency or prove anything to anyone, though deeply ingrained behavior patterns prevail as always.

People react differently to the facts of death and dying.  Some want to know all they can; others don’t at all and prefer to let disease lurk in shadow. 

There may be rare brief moments of pause when you realize impending death. 

In general, I think this gets real only when it’s really in-your-face, with no getting around it.   For me, the gist of this was an up-down on-off roller coaster ride:  Die. No, live.  No, die.  Not yet.  Soon.  Maybe not…. and so on.

Otherwise – you can always pay lip service, or just completely ignore the problem,   fill out a proxy form because you’ve heard you should, and forget about it. Put it behind you.  In the face of the demands of living what’s the point in dwelling on death?

Yet death may be the biggest event in your future.  We can learn the little there is to know about death only from the dying, or from people who work with the dying in oncology, geriatrics, hospice or home hospice.  Or other people who have seen a lot of death.  For the rest of us, it’s often something to discount, deny, disregard.

If you’re in the crosshairs, this encounter is very real.  You can’t change much of anything, but you can prepare yourself psychologically. You can face down an ugly surprise, even if like me you are a master of denial, rationalization, & delusion.  Still, confronting the end is an on-going process, not a one-time event, for as long as you’re breathing.  You’re not done until you’re done.

You can begin to absorb your new reality, to reconcile yourself, and to wrestle with it.  It can help to look with both eyes open at what’s coming, to get a clear picture of the upcoming downward spiral. You can try to plan.   But conditions come and go, people get better & celebrate and get worse and die the next month.  Or hang on, in compromised health, for a longer time.  Or endure the side effects of treatments that are often worse than the disease, then die anyway. Nothing is certain, everything seems final.

With a terminal or degenerative disease, you realize your health is in accelerating decline: with slow decline in the beginning, then decline speeds up, with protracted suffering, and amazingly becomes everyday reality, business-as-usual.

THE WAY DOWN

Decline aggregates only gradually, advancing by tiny increments.  You can perceive what’s happening bit-by-bit while no one thing is enough to establish a tipping point between life and death. By the time you are afflicted with unmistakable markers of extreme pain and nausea, or severe neuropathy, your condition is too intense, and it is too late to think clearly about how to handle impending death.  By this point, you are definitely terminal and your suffering is most likely to intensify.

In my case, there are now some waypoints to help mark impending decline, and there will be more.  I can now clearly sense my diminished stamina and I know my sight and hearing are impaired. One major waypoint will be diagnosis of metastatic cancer.  

There will be a time when I have to rest to make the three flights of stairs to my apartment.  Then a time when I can’t climb stairs at all.  Then from homebound to bedridden.   I may face organ or system damage from chemotherapy or metastatic cancer, or from aging.

If you have terminal illness you know that  the end is coming but not exactly how or when.  Probably sooner than later.  You generally live more in the present.  There will be a point of no return, the last exit before the final one.

This is the point at which decline kicks in and accelerates, and memory and other mental functions begin to fail, when mobility decreases and enfeeblement advances, as systems weaken, falter, and shut down.  You want to be lucid.   You need to be aware and planful,  While you can – before you become a husk of a human.

This is a last opportunity to look at limited options: you can submit, try to mitigate, or go for early exit to bypass pointless pain and suffering.  A patient can decide at this point whether living may be better or worse than dying.  This is the last point at which a patient can exercise physical and motor control, or make competent decisions about his or her fate. After that you are at the mercy of the pain and nausea of disease for the final ugly ride down.   

THE DILEMMA

There is nothing more final than death.  There is little that is uglier than being shriveled and shredded by disease, and with pain, nausea, neuropathy, and other side effects of treatment, including palliative measures.  And doctors are commonly wrong.  They are especially bad with predictions.  All shades of grey, nothing clear or definite, little or no good news.

During cancer treatment, I took a self-guided tour of a hospice ward of terminal patients staring blankly at the ceiling, nobody  very lucid… death-rattle rasping  breath, oxygen tanks, long-gone mobility, weakness and enfeeblement, loss of memory, hearing, sight.  Some newly empty beds, vacant halls.  A slow-motion preview of the morgue. That’s what’s in store?  No thanks… no way to go.   But then what?

Home hospice can ease suffering somewhat with drugs and intermittent nursing care, though not much and not for long. 

When the only end is likely lingering death and suffering, it may make sense to opt for early exit and bypass pointless suffering.  On one hand, death is a certainty; life, on the other, is a dice roll.  In Brooklyn we say, Go figure.

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The anonymous author of this post is a member of the Final Exit Network and lives in New York.