when the body says no

 

So...it happened again. A friend just received news of his advanced stage cancer diagnosis after months of waiting for diagnostic scans to be scheduled, then waiting for the biopsy, then waiting for the results...and now waiting to schedule a PET scan to determine what treatment might still help...sending us all to our computers to research what might lie ahead for them. It makes you wonder if all the delays will affect his prognosis and outcome, but let's not go there.

"Bad news does not get better

with time."

~Mark Villareal~

Instead, let's consider a few other factors that might affect the course of his treatment.

The book I coincidentally happen to be reading is "When the Body Says No" by Gabor Mate, MD. 

In it he discusses autoimmune diseases as well as immunity against common cancers and their relationship to stress:

• Why some people appear to be more susceptible to autoimmune diseases and some cancers, while others are spared. 
• The role stress plays in the unmasking of autoimmune problems, and how coping strategies affect the course of the disease (denial, repression, anger, depression).
• How negative and positive thinking affect healing.
• Strategies that can mobilize natural immunity and promote healing.

While genetics, environment, nutrition, and lifestyle are important, stress and how we cope with it also play a role. The field of psychoneuroimmunoendocrinology takes everything into consideration, measuring hormone levels, observing changes in cellular biology, exploring personality traits, and scanning the brain in response to stress to create profiles that correlate with patient outcomes. More or less.

The problem for my friend is that he has no background in medicine and can't really understand what is happening. Denial is in play, or perhaps it's the inability to process and express the emotions that flood patients in this situation. They can feel helpless. Confused. Doomed. 

"Even miracles take a little time."

~The Fairy Godmother in Cinderella~

While his family and friends rally around him to provide support, encouragement, and comfort, the medical community mobilizes its superpowers: surgery, radiation, chemotherapy, and now, immunotherapy. It's all pretty scary.

This is the thing. Patients need to understand what is happening to them, especially when the future is uncertain. Someone needs to ask what they are thinking. What they understand. What they believe. They may need to hear that this is not their fault. That options are available. That there is hope, or that hope is running out. It involves explaining what is happening every step of the way, and the reasoning that goes into medical decision making. It means sharing our expectations for the patient. Even our fears. It means responding to theirs. If they don't process and express the feelings that flood them, they are left to flounder in a sea of confusion, fear, and despair...not a healing space around them.

"Three factors that universally lead to stress:

--uncertainty

--lack of information

--loss of control."

~Gabor Mate, MD~

This is a process that involves not just our patients, but the people who gather at their bedside because they care about them. Because they love them. When we treat patients, we treat their family and friends, as well. They need to understand what is happening and what to expect. They deserve our attention. They need our consideration, compassion, and support, too.  

The overwhelmed physician may suggest this is what we have nurses, social workers, psychologists, pastors, and family and friends for. In today's health care culture, you can get away with this. You can focus on the bulleted lists in the electronic medical record and leave the rest of it to your staff. You can apply what you know about medical and pharmaceutical technology without really knowing your patient. He will still heal. But by disengaging yourself from your patient's psychological, emotional, and spiritual life, and from his family and friends, you sacrifice your connection with him. Unless you include them in his care, you disconnect him from his support system. From his caretakers. This can leave all of them with fear, uncertainty, confusion, and dread when what they need is engagement, support, and understanding.

How do you support your patients and their families when the prognosis is poor, and the way forward is difficult? Do you know...or care...about their fear, anger, or denial and how it affects their ability to heal? What could you be doing differently?

Remember:

"Everyone you meet is fighting

a battle you know nothing about.

Be kind. Always."

~Ian MacClaren~

jan

no mud, no lotus

 

If you are a healthcare provider in any field, or the caretaker for someone you love, you are well aware of the duality that permeates every aspect of reality...the coexistence and contradiction between joy and sorrow, between kindness and cruelty, between life and death. We feel this deeply every day in some way, but never more acutely than when the people around us are suffering.

If you are writing about your experience, you may feel the push and pull of duality in your narrative.

First there's the story you have pictured in your mind...and then, there's the process of translating it into words on a page. It can take you from soaring with enthusiasm to slogging through the muck. You may find yourself stuck.

"No mud, no lotus."

~Thich Nhat Hanh~

Inspiration wanes, fatigue sets in, and the story line languishes. Self-doubt creeps in. And even though the end is in sight, like a desert mirage, it fades away the closer you get to it.

"What makes the desert beautiful

is that somewhere it hides a well."

~Antoine De Saint-Exupery~



This is a lonely place for writers. Your manuscript isn't polished yet so no one else has seen it or commented on it. Therefore, you don't get to enjoy the inspiration that comes with an exchange of ideas, weighing in on suggestions from writing partners. You need a fresh infusion of incentive, like the energy that emerges when composing a query letter or submitting to an editor or agent. But you're not there yet. This is just hard, lonely work, day after day.



How do you cope with it? 

Sometimes I'll take a little time out to dash off a piece of flash fiction, a short essay, or, like today, a blog post. It's like indulging in a little snack when you can't wait for supper.

 

Sometimes I have to tear myself away from the keyboard and polish off a few necessary chores before I can concentrate again. For example, when there's no food in the house, or I run out of clean underwear. I mean, priorities do change. Writing sometimes has to wait while life marches on. Storytelling may have to take a back seat for a while.

What can you do in the meantime?



When I'm stuck for an idea or unsure how to put one into words, I'll pick a random passage to edit and revise, backtracking a bit until I'm sure I'm on the right path again.

"Real writing begins with rewriting."

~James A. Michener~



It also helps to read something by another author on a similar topic. A couple of my go-to favorites are:

"Memoir as Medicine" by Nancy Slonim Aronie

and

"Still Writing" by Dani Shapiro

Just the process of reading beautiful writing invites the mind to get in on the action. 

Do you ever get bogged down in the middle of a project? What do you do to recharge? To move ahead? How do you get it all done?

"Many of life's failures

 are people who did not realize

how close they were to success

when they gave up."

~Thomas A Edison~

jan

the willing suspension of disbelief

...in case the heat is starting to get you down...

The stack of books-to-be-read on my nightstand, coffee table, and desk is getting out of control! 

It's not that I don't like to read. I do. It's not that I don't have time to read. I do. The problem is that one interesting thing leads to another. For example, in "Brave New Medicine", Cynthia Li, MD talks about autoimmune diseases and the role of functional medicine (traditionally known as "alternative" medicine including such practices as acupuncture, Qigong, meditation, Reiki, and other forms of energy medicine) in treatment. This leads her to a discussion of the roles of neuroplasticity, quantum theory, and epigenetics in healing and how our health is affected by our thoughts, beliefs, and intentions. It's no wonder I get distracted.

Li, a board-certified internist, traces her own journey, beginning with a bout of postpartum thyroiditis that never really goes away. She describes the devastating effect it has on her professional and personal life, and the frustration and defeat she felt when traditional allopathic medicine failed for her. She encourages the reader to explore alternative, or functional methods, when all else fails.

"When you have exhausted all possibilities

remember this:

you haven't.

~Thomas Edison~

The point is that autoimmune problems run in my family, so I know they can be notoriously difficult to diagnose, and frustrating to treat. In fact, one of us underwent surgery just last week for an autoimmune condition that has insidiously progressed over the years despite ongoing medical supervision and treatment. And I was just switched to a drug that runs over $7,000 per month which puts it totally out of reach for most of us except that Medicare, supplemental insurance, and a generous patient assistance program through the company that produces it, cover most of the cost...if you "qualify".

Autoimmune disease exacts a harsh physical, emotional, and financial toll on patients and their families. The symptoms vary. The diagnosis can be elusive. The treatment can be expensive, cumbersome, and often ineffective. Not to mention that we know so little about its causes and prevention. 

When a patient encounters a difficult diagnosis, fails to respond to traditional treatments, and gets worse despite our best efforts to help them, it may be worth looking outside the proverbial box and consider something completely different. Li invites us to "suspend disbelief" and keep an open mind to alternative practices that have a long history of success in other cultures and systems, which is how she finally healed.

"Your body's ability to heal

is greater than anyone has permitted

you to believe."

~Bruce Lipton, PhD~

jan

on the brink

 

Most of us would agree that the key to a long life has something to do with maintaining a healthy lifestyle. Following a healthy diet. Maintaining a normal BMI. Exercising regularly. Keeping the mind active and engaged. Avoiding cigarettes, alcohol, and other drugs and inhalants. Managing hypertension, diabetes, and other chronic diseases. Controlling stress. Some of us even believe that relaxation techniques and meditation are helpful. Some people embrace faith as a factor. It all makes sense.

"The secret to living well and longer is to:

Eat half,

walk double,

laugh triple,

and love without measure."

~Tibetan Proverb~

This past week, though, a few other possibilities came up. These are based on studies performed by people who have dedicated their professional lives to unlocking the secrets for living longer and better. One study looked at napping patterns as an indicator. It turns out the timing of naps, their duration, and frequency can be an indicator of poor health. So, try to avoid long naps late in the morning and around midday. Thankfully, however, a quick power nap every so often seems to be safe.

"Let's begin by taking a

smallish nap or two."

~Winnie-the-Pooh~

A number of studies promote the idea that social interaction is important and that loneliness and isolation are detrimental, which is a bit off-putting to those of us who enjoy solitude and prefer silence. We can be perfectly happy, healthy, and engaged in relative isolation. Then there's the suggestion that having a dog can help. A dog provides companionship and requires exercise, so that makes sense. Poverty seems to have a negative impact, while wealth is good. Duh!

The problem with these studies is that it's hard to control for all the factors that play a role in longevity. So, for the most part, these associations suggest they are correlated, but don't prove causation. This is reassuring because, if napping shortens one's lifespan, I'd need to dramatically increase my caffeine intake. And if having a dog adds years to one's life, I know right where to get one. (It's a rescue...)

The point is longevity is partially determined by genetics and luck (meaning whether you're lucky enough not to get sick). No one questions the value of a healthy diet and lifestyle, exercise, and loving relationships. To these, I would add:

• Stress management in the form of meditation, yoga, and practices such as Tai Chi and Qigong
• Spending time outdoors

"Everybody should be quiet 

near a little stream and listen."

~Christopher Robin~

• Engaging in creative and/or cognitive activities
• Relaxing into music you love
• Self-care, whatever that means to you

"Self-care is a divine responsibility."

~Attribution Unknown~

As we totter on the brink of nuclear war this week, remember this:

"In the end, 

it's not the years in your life that count.

It's the life in your years."

~Abraham Lincoln~

jan

truth or consequences

Don't judge anyone, ever. Not for their green hair, or the ring in their nose, or the tattoo on their bum. Not for the clothes they wear, or the car they drive, or the shelter they depend on. That's one lesson I learned at the "Writing from the Heart" workshop with Nancy Slonim Aronie. Don't judge people when you don't know their stories. You can't tell what they've been through by the look on their faces when you pass them on the street. You can't imagine the heartache that keeps them up at night. If you knew, you'd invite them all in for milk and cookies.

"Everyone you meet is fighting

a battle you know nothing about.

Be kind. Always."

~Robin Williams~

Another lesson we learned? Humans need to feel safe. Free from judgement. Embraced just as they are, all tattered and torn. Why? Because until they feel safe, they'll never tell us their stories. Unless they can cry right there in front of people--strangers, even--without fear, they won't say a word.

"Lokah Samastah Sukino Bhavantu."

~May all beings, everywhere, be happy and free~

At this workshop, twenty-two of us, strangers one and all, sat in a circle and bled onto the page for 10-15 minutes at a time to prompts like these:

• The hardest thing...
• What I didn't tell you then...
• A time you acted one way, but felt another...
• Dinner at my house...
• I picked up the phone...
• Waiting...

At the end of fifteen minutes, we read what we had written. This wasn't one of those workshops that invites you to read your piece if you'd like to...because you're so proud of it. No--everyone read what they had written. 

"As a writer, the worst thing

you can do is to work

in an environment of fear of rejection."

~Carol Leifer~

It wasn't the quality of our prose that mattered, but the depth of feeling and the honesty that went into it. There were tears and there was laughter. There were breakthroughs. Transformations. Victories. 

Here's one piece: 

True Story:

A time I acted one way, but felt another...

Visiting hours had ended. The lights had been turned down for the night. Except for an insistent call bell somewhere down the hall, the floor was quiet.

I was standing at the nurses' station with the attending on the case, Dr. Bush, and a man he introduced as the husband of the latest after-hours admission. 

Dr. Bush presented the case in standard rhythm and verse: "The patient is a 46-year-old Caucasian female who presents with a one-month history of shortness of breath and cough, a twenty-five-pound weight loss, and night sweats. She is being admitted for further evaluation and treatment."

He slipped her X-rays into the viewing box, and there it was--the smattering of hazy white balls in both lungs that shouted the word "cancer."

Dr. Bush glanced at the patient's husband. "Paul?"

The man straightened his shoulders and looked me in the eye. "The word cancer is not to be used around my wife. Do you understand?" he said. A tear escaped. "It would kill her if she knew."

Suddenly, what appeared to be a sad but straight forward case became a moral dilemma.

Dr. Bush repeated, "Doctor? Do you understand? She is not to hear the word cancer. Tell her anything, just not that."

The name of this game is "Let's Pretend." Let's pretend the patient doesn't have cancer. That it's something else. Let's pretend that this will somehow make it easier for her. That it will erase her worry, relieve her pain, give her hope.

But what was I supposed to say when she asked, "What's the matter with me, Doctor? What did you find?"

That pneumonia sometimes presents like this? That even adults can develop asthma later in life? That we'll get to the bottom of this, don't you worry?

How will she prepare for the end? Who will be there to help? Who will stay at her bedside and hold her when she cries? How will she say goodbye to her children? How will she plan her funeral? Who will choose the music and prayers?

I wanted to say, "No, Dr. Bush. I do not understand. It isn't right to lie to her. This isn't the time to pretend."

Instead, I picked up my stethoscope and started down the hallway to the patient's room. 

So, what would it be? Tell her the truth, or face the consequences?

*

Go ahead. Give it a try. Tell us what, for you, was the hardest thing. What you wish you had done differently. What you wish you had said but didn't. You have fifteen minutes. Go!

Then, find a safe person and read it to him or her.

"Write your story on my heart."

~Brene Brown~

jan

true stories & big ideas

 

In a couple of weeks, I'll be heading to a writing retreat with Lara Love Hardin who, prior to registering to spend the weekend with her, I'd never heard of. Looking back, I think I should have known something about her because I've read several books she co-authored with none other than the Dalai Lama and Archbishop Desmond Tutu (The Book of Joy and The Book of Forgiving) Out of curiosity, I ordered a copy of her memoir, "The Many Lives of Mama Love", you know...just to see if her writing resonated with me. To see if I thought I could learn something from her...

...because, it turns out, we're nothing alike. 

Or maybe we are.

She was a typical suburban soccer mom until she got hooked on Vicodin, "as needed for pain". Long story, short...she eventually became addicted to heroin and plunged into a life of crime to support her habit. That landed her in jail. Me? I've never so much as smoked a cigarette and the last time I drank a little too much, I was in high school. The closest I've come to a run-in with the law was a speeding ticket, also in my teens.

Her story portrays the time she spent in jail and on probation. Her utter helplessness against the system. The injustices she suffered. The shame that blanketed her. And then, the redemption she earned as a writer.

"True redemption is when

guilt leads to good."

~Khaled Hosseini~

I would not generally choose to read a woman's prison memoir, but I have not been able to put this book down. It resonates deeply with me because I can identify with her story even though it is so different from mine. I understand her struggles. I can identify with her desperation, uncertainty, and despair. Her heartache. Her surrender. Turns out, we have quite a bit in common.

This is the thing: These are universal themes that we all encounter in one way or another in our very different lives. Our weaknesses and longings sometimes lead to defeat. We are betrayed, shunned, or abandoned by people we trust. Most of us will beg, borrow, or steal, metaphorically speaking, at some point in our lives in order to meet our needs. We feel shame. We bear blame. But, as this story posits, forgiveness, redemption, and reconnection are within reach for all of us.

Books like this seem to land on my nightstand out of the clear blue sky. I wasn't looking for it. I never would have pulled it off the shelf at the bookstore or library. It's as though the muses conspired to provide me with what I needed before I knew something was missing. 

"Some books find us

at just the right time in our lives

and those books change our lives forever."

~Matthew Kelly~

This is something we should all strive for in our writing. To touch on universal themes and emotions. To lead the reader into the depths of our fear, grief, and despair...and then to resurrect him. To show him the way out. To show him how we found our way back. To give him hope.

Now I'm really excited about spending the weekend with the author. I feel as though I know her already. I think I'll learn a lot from her.

jan

hunting for zebras

 

When we were studying the art of clinical diagnosis in medical school, we were cautioned not to look for "zebras"--those rare, exotic diseases and conditions we studied but were unlikely ever to encounter in clinical practice. In other words, when a child presents with fever and rash, Fifth Disease or chicken pox should come to mind before you think about less common causes, like Rocky Mountain Spotted Fever or rubella. When a patient comes in with abdominal pain, rule out appendicitis and cholecystitis before you start to worry about Familial Mediterranean Fever. If the problem is dehydration and diarrhea, consider viral gastroenteritis or food poisoning before you think about cholera.

 

"If it looks like a duck,

and walks like a duck,

and sounds like a duck...

chances are it probably is a duck."

~unknown~

 

Not always, though.

 

True stories:

• The patient was a woman in her sixties. She was admitted from the ER directly to the OR with a diagnosis of "acute appendicitis." She'd had increasing pain and tenderness in the right side of her abdomen for two days. As the intern on call that night, it was my job to perform the admission history and physical, and to write orders before the surgeon could begin the operation. The patient was already on the operating table and the OR team was ready to go. "Don't waste time," I was told. So I took a quick history, checked the patient's vital signs, and listened to her heart and lungs. Then I examined her abdomen. She was tender deep in the right lower quadrant directly over McBurney's point--a classic finding in appendicitis--except for one thing. When I pushed in, something throbbed against my fingertips. It was painful for her as expected, but I caught my breath when I felt the pulsating mass and heard the whoosh, whoosh, whoosh of blood coursing through it. I'd seen several cases of appendicitis by that time, and trust me, the appendix does not pulsate. But a dissecting aortic aneurysm does. This was a problem. The OR wasn't prepped for this kind of procedure. The blood bank would need to be alerted, the vascular team assembled, and ICU notified. And time was critical. Zebra #1.

• A twenty-two-year-old man presented with a several week history of fever and malaise. Two weeks earlier, he'd seen a doctor who diagnosed him with a non-specific viral illness. Upon careful examination, he now had a soft (barely audible) diastolic heart murmur and mild enlargement of his spleen, classic findings for subacute bacterial endocarditis. He died two weeks later. Zebra #2.

• A sixteen-year-old presented to his PCP with a two-week history of a cold and sore throat. Everyone in his family had had the same symptoms and had recovered uneventfully. The patient's sore throat, however, persisted and was getting worse. Long story short, what sounded like a straightforward case of pharyngitis or Strep throat in a healthy adolescent, turned out to be gonococcal pharyngitis in a closeted gay teenager. The sexual history is not something most of us routinely obtain when we're seeing a patient for upper respiratory symptoms. Zebra #3.



"Medicine is a science of uncertainty

and an art of probability."

~Sir William Osler~



Today, more than ever before, physicians and other health care providers are under intense pressure to see more patients faster. It's tempting to jump to conclusions. To rush through the patient's history and to gloss over portions of the physical exam in order to save time. Sooner or later, though, you're likely to miss an important detail in the patient's story, or to overlook a subtle finding on examination that points to the diagnosis. 

 

What you think is just another pony over there in the field, may turn out to be a zebra, after all.

 

"The intuitive mind is a sacred gift,

and the rational mind is a faithful servant."

~Albert Einstein~

jan