Archive for May, 2014

Cancer and What I’m Hoping For

Thursday, May 22nd, 2014

I am not—as far as I know anyway—a person with cancer. That could change—after all, I’m overdue for a colonoscopy, and who knows what it will reveal? But for now at least, I’m not a cancer patient.
And I’m not an oncologist or oncology nurse, nor a hospital chaplain. What I’m trying to say here is that I have no more experience with cancer than any average American: I’ve lost a few dear friends to the disease, and I fear it.
What I do have experience with is death.
I serve as the chaplain to the Maine Warden Service. It is my job to accompany game wardens when they respond to various calamities in Maine’s woods and waters, especially when these have resulted in death. I am on-scene to support the families during the search and recovery operation, to give notification when a fatality has been confirmed, and to help mourners through the initial rituals of bereavement, such as seeing, touching and saying farewell to the bodies of their loved ones.
These are mostly sudden, unexpected and relatively speedy deaths—accidents, drownings, suicides and homicides. However, they are not always experienced as sudden or swift by the survivors.
For instance, the initial call could be a request for wardens to find a missing person. Let’s say it’s a teen aged girl. We’ll call her Pepsi. Pepsi Cola. (Those of us who give instruction at the police academy have learned the hard way not to use real names!) Pepsi was last seen headed toward the river with her fishing rod, and nobody has seen her since.
When the game wardens arrive, they along with Pepsi’s parents will be hopeful.
Mr. and Ms. Cola will reasonably expect that their daughter is going to be found, well and uninjured and that they will all go back to normal life. They don’t even have to think of this as hoping for a miracle, since the statistics are with them: Most lost teenagers do get found.
But let’s say the night passes and Pepsi isn’t found. The Maine Warden Service chaplain—that’s me—is called. I arrive at the scene, hang out with the Colas, answer their questions. They tell me about their daughter’s interest in fishing, how she’s the co-captain of the soccer team, how she’s a happy, good kid… Maybe Pepsi fell and injured herself somehow? Mom and Dad are just hoping it’s not too serious, maybe a broken ankle or something that will heal before the play-offs…
Fast forward: Pepsi’s been missing for two days … The temperature has been below freezing…sleet and freezing rain fell during the night…When Pepsi was last seen, she was wearing jeans and a hoodie, not the kind of gear necessary for these conditions…her fishing rod is found, washed up downriver…the dive team is searching under water.

What should I, as Warden Service Chaplain, say to Pepsi’s parents?
“Oh, well, everyone is different so I can’t really say what Pepsi’s chances of survival are…”
“Miracles have been known to happen…”
Since I’m an ordained minister, I could invoke the power of prayer: ”With God, all things are possible…”
“The most important thing you can do is to keep hoping…”
I could quote Bernie Siegal: “Refusal to hope is nothing more than a decision to die.” (Bernie Siegel, M.D.)

I don’t do any of these things. Instead, the wardens and I tell Pepsi’s parents the truth: The situation is not good.
Mr. and Mrs. Cola do not give up hope… instead, they begin to change what they are hoping for. They begin to hope that Pepsi isn’t really such a good kid after all… maybe the State Police computer crimes unit will find evidence in Pepsi’s laptop of an on-line boyfriend she’s run away with, maybe she’s hitchhiking to Florida… they might even find themselves hoping that Pepsi has been kidnapped, if only because a kidnapper could be keeping her someplace, against her will but alive.
But the family also calls all the relatives and lets them know what’s going on. They call their church, and the pastor comes to the scene to comfort them.

Here’s the thing : If hope is such a good thing, why not stop searching? After all, if we don’t look, we can’t find. Without a body, Pepsi’s parents won’t have to plan a funeral, accept their neighbors’ offerings of casseroles and sympathy. They’ll be able to greet every morning for the next fifty years asking each other if this might just be the day their daughter walks through the door.

“Preparing for the worst doesn’t make the worst happen,” I say to Pepsi’s parents, just as I have said it to so many other spouses, friends and family members. If we’re wrong, or if a miracle happens, and Pepsi comes walking through that door warm, safe, undrowned and alive, great! Fabulous! But good stuff can be taken on the fly: It’s bad stuff that could use some preparation.
Another bitterly cold night goes by.
Pepsi’s parents don’t stop hoping at this point either. They begin to hope for an answer to the question: What happened? They hope that the search won’t drag on too long, that they won’t remain trapped in the unbearable twilight of uncompleted, half-imagined loss but will instead receive concrete evidence and permission to grieve.
Because Maine game wardens are kind as well as skilled, they will do their very best to find Pepsi’s body and return it to her family. Their best is nearly always good enough: Most of the time, the body is found and when it is, the families express not the anger and resentment of dashed hope, but fervent gratitude for the chance to love their child by burying and mourning her.

“Refusal to hope is nothing more than a decision to die.”
What I’ve just described gives you some idea of the perspective I bring to this talk. I’m going to see if I can draw some connections between what I know are two very different kinds of life crises: Sudden bereavement on the one hand, and being diagnosed with cancer on the other.
I do this with more confidence than I otherwise might, because I’ve had the opportunity to speak to groups of healthcare providers in various contexts—the Maine Medical Association, the University of Virginia medical school, meetings of hospital and hospice chaplains. The topic I am asked to speak about is “Giving Bad News.”
When the Maine College of Surgeons asked me to talk about this at their annual conference, I was taken aback. “Don’t surgeons know more about that than I do?” I asked.
Apparently, while every police officer in Maine is given at least some training in breaking bad news— it’s called “Death Notification,” and I teach the class at the warden school—most physicians are never given any formal preparation at all.
Even with training, telling people bad news is difficult. Human beings are empathetic: We feel pain when others feel pain. Nobody likes pain so it’s normal to try to avoid it. (The wardens are generally thrilled when I show up at a fatal, because it means they can get out of telling the family!)
Doctors, like cops, tend to feel responsible for outcomes, and death thus represents their own failure to rescue, heal or protect. Nobody likes to fail.

On the other hand, it is not acceptable for either cops or doctors to make suffering people suffer more, just to avoid their own discomfort.
So this is what I tell doctors:
First, everybody is going to die. You, me, everybody. Death is the one thing human beings are guaranteed to experience eventually—it’s always been true, it will always be true. Which sucks.
On the other hand, since death is a universal and ubiquitous experience, we cab be confident that human beings not only know how to cope with it but, given half a chance, they’ll make something meaningful out of it. That’s the human gift: We can make reality meaningful. But we can only do this if we’re allowed to know what our reality actually is.

When giving death notification, the rule of thumb is to be kind but quick and clear: “Mr. and Mrs. Pepsi, we have found your daughter’s body. She is dead. I’m so sorry.” Euphemisms like “passed over” or “passed on,” should be avoided because people under profound stress are easily confused.
How are Pepsi’s parents likely to react? Shock generally precedes grief. Vocal responses will initially signal resistance or disbelief rather than sorrow: “What? No! You’re kidding!” If standing, the mourner is very likely to sink down to the floor. She may cry, curse, flail around… all of this is normal, and need not be interrupted unless safety is an issue. I usually just go down to the floor beside them, make comforting noises and wait. I won’t start explaining anything at this stage because it won’t be retained. My body language is unhurried, confident, calm, patient, attentive. I consciously keep my arms open (not crossed) and my hands “soft” I offer physical contact, but stay alert for signs that it isn’t wanted.
This initial phase doesn’t take long—maybe twenty minutes. Then Mrs. Cola will sit up, or at least look up, look me in the eye and ask a rational question for which I shall give a practical answer. (It’s usually “where is she,” meaning, where is Pepsi’s body.) And we go forward from there.
Mr. and Mrs. Cola love their daughter. Grief and mourning are the form love takes when it has slammed into loss. I have neither the right nor—ultimately—the power to take away their pain.
What the wardens and I can do—what we do to the best of our ability—is add love.

When Jesus came down from the mountain, great crowds followed him. And behold, a leper came to him and knelt before him, saying, “Lord, if you will, you can make me clean.” And Jesus stretched out his hand and touched him, saying, “I will; be clean.” And immediately the man’s leprosy was cleansed. 4 And Jesus said to him, “See that you say nothing to anyone, but go, show yourself to the priest and offer the gift that Moses commanded, for a proof to them.

Jesus’ patient is described as a leper, but the term was used to describe people who suffered from any number of diseases of the skin, from eczema to erysipelas to systemic scleroderma.
So there’s nothing wrong with putting someone like my friend—I’ll call him Moxie— into the story. Forty-six years old, healthy as a horse, didn’t smoke, didn’t drink much, got plenty of fresh air and exercise, lived a blameless life devoted to public service… Picture Moxie, approaching Jesus in Matthew’s story, kneeling before him and saying “Lord, if you will, you can make me clean.”

In a parking lot on a nice spring day, Moxie rolled up his sleeve to show me the red rash that covered his arm and hand and, he said, his whole body. It looked just like an allergic reaction. Being a Mom, I asked him whether he’d recently changed laundry detergents?
That wasn’t it.
On television, the doctors “run some tests” and have the bad news ready for the patient before the next commercial interruption: For Moxie, at least, it took four months of uncertainty and fuss, during which all the statistically more-common illnesses were ruled out and doctors could reasonably begin testing for the weird, rare diseases. Moxie turned out to have T-cell Lymphoma.

Lots of people—Moxie, Moxie’s wife and son, his mother and brother, his friends and his chaplain—prayed for Moxie. We all asked that Moxie be healed, by which we meant exactly what the leper in the story meant. We weren’t asking for a metaphor, or a spiritual transformation in which the body’s ills are rendered irrelevant. No, we wanted what the guy in the story wanted, what the guy in the story got. We wanted Moxie’s cancer to go away.

Moxie’s doctors also wanted Moxie’s cancer to go away, and what’s more, they had treatments from chemo to stem cell therapy that might make this happen. Moxie wasn’t a huge believer in religious miracles, but he was ready to try for a medical miracle, and to do all he could to help the doctors help him.
If you are a cancer patient you may have been told that the most important thing you can do in order to conquer cancer is to maintain a good attitude, keep fighting, keep hoping. When my step-daughter was in nursing school, this was emphasized by her teachers in no uncertain terms: Do not take away the patient’s hope.

When Jesus healed the woman who had leukemia, he told her that it was her faith that had made her whole. Faith healers tell people that believing is healing. When my friend Jamien had breast cancer, her alternative Chinese medicine guy told her essentially the same thing: That her physical health depended entirely on her spiritual health. And when Moxie was in the hospital in Boston, enduring what the physicians referred to as the Napalm of chemotherapy, he was encouraged by his doctors to cling to the conviction that if he just kept fighting, kept stubbornly hoping for a miracle, it could happen. At the very least, the miracle was more likely to happen if he hoped for it… if he stopped hoping, stopped fighting, stopped agreeing to yet more heroic treatment, then he was sure to die. Hope was his only hope.
“Refusal to hope is nothing more than a decision to die.”
Moxie died. Not because he stopped fighting, not because he was spiritually unworthy of health, but because he had a kind of cancer we can’t yet cure, and it killed him.

I don’t really need to make a plan for not having cancer. If my challenge is to figure out how handle a long and perfectly healthy life, well, I’ll just muddle through.
But let’s say I develop weird symptoms like my friend Moxie, have a bunch of tests and these are reported to my doctor, Dr. Merrill, who then has to give me the bad news.
Here’s what I want Doctor Merrill to say to me: Kate, you are in the early stages of a rare form of cancer. There is no cure, and the disease is virtually always fatal. I’m sorry.
Kate: What do you mean by virtually always fatal?
Dr. Merrill: The five year survival rate for this cancer is less than 1 per cent.

“At which point, the patient will freak out,” a medical student protested, when I suggested this.
Sure. Okay. Why not? If by “freaking out” you mean that I, the patient, will say “omigod omigod” roll around on the floor, shriek, curse, scream obscenities, wet my pants and shake my fists at heaven—-Yup.
I’m fully expecting to do all of the above. After all, that pretty much describes what I did when I was told that my first husband had just died.
But I am not still shrieking and flailing about that, so presumably next time, too, I’ll eventually pull myself together. And then Dr. Merrill can give me a hug and tell me how much he’s always enjoyed my pap smear jokes…
….and then I’ll ask some practical, rational questions.
Like: How much time do I have?
Practical, rational questions deserve practical, rational, truthful answers. If you can’t give me a precise answer, then give me a range. And give me the worst case scenario, two months rather than four. (That way, if I live three months, I’ll be able to gloat.)
The earlier my doctor tells me that I haven’t got much time to live, the more time I’ll actually have to do the things I care most about. Tell me that I’m going to die when I’ve still got two years, not two days in which to extract the great and only gift a death has to offer— a richer awareness of our living and a deeper love of those we live beside.
Here’s the thing: Moxie’s doctors did not make it clear to him that his chances of surviving more than a few years were virtually nil until he was so sick that his chances of surviving more than a few weeks were virtually nil.
What might he have done with his few years if he’d known that a cure wasn’t actually possible? Would he have spent it puking in an isolation ward in Boston, or would he have opted to spend it in Maine, with his dogs and his garden and his apple trees? I don’t know.
I don’t even know for sure which I would choose—suffering treatments that offer even the remotest chance of life… or accepting death, and getting as much good life lived before it comes to claim me? I’m a coward and I hate hospitals and I’m not afraid of death… but I do want to see my grandchildren and my great-grandchildren. I’ve got more books to write, and adventures with my game wardens to have, and I’ve really been looking forward to becoming a cranky, wrinkly, eccentric old coot. So I’ll fight, I promise…but not necessarily courageously or “all the way to the end.” I promise to hope, but I reserve the right to change what I’m hoping for.
A long life… or maybe just a nice, hospice bed set by my windows so I can watch the squirrels harass each other and raid the bird feeders. Hope that my husband and children will sit around and tell me stories and make me laugh. Hope that the Colonel of the Warden Service will bring over his guitar and sing me the Ballad of the Maine Warden one more time… My daughter Woolie says she’ll knit me a shroud. Doesn’t that sound good?
I read recently that a study released by the New England Journal of Medicine found that those who received palliative care lived, on average, almost two months longer than those who received standard care and reported a higher quality of life through the final course of their illness. More and better life—there’s something to hope for, right?

As long time readers may recall, my grandson Drew sustained catastrophic injuries during his birth. When the doctors told his father the baby’s condition was hopeless, Zach asked them an excellent question: “If we can’t give my son a good life, can we give him a good death?”
Jesus gave life—good life—to his patients. Modern medicine does, too—more often and more skillfully and more miraculously than our ancient forebears could possibly have imagined.
There’s plenty of reason for plenty of hope. But not hoping isn’t what makes us die. Life is what makes us die: Death is still inevitable, and it still stings. So here’s the question I want us all (doctors too) to get good at asking:
“When life is no longer an option… what would a good death look like for you?”