The Language of Cancer

Have you considered the language of cancer? Battle metaphors abound..."the war on cancer", "survivor", "hero", "winning the battle", "conquering", "fought the heroic fight", "lost the battle" etc. Why do we use these metaphors with cancer but not with other diseases? For instance do we use the same language to describe someone living with or who has died from such chronic and life-limiting illnesses as chronic obstructive pulmonary disease, heart disease, diabetes? Why the difference? Language is important and the effect on ourselves and others as we identify with certain metaphors is interesting to consider. An interesting discussion of this topic in a blog post from the Dana Farber Cancer Institute in Boston

Find a Bit of Beauty...Countdown to Spring #10

"Find a bit of beauty in the world today. Share it. If you can't find it, create it. Some days this may be hard to do. Persevere."

These are the words Lisa Adams (@AdamsLisa) shared in each of her posts. I wrote about Lisa last year and have continued to follow her writing through her blog and on Twitter throughout the year. Metastatic breast cancer took Lisa's life last week. She taught us much during her time with us, especially lessons on finding beauty in the world, even when things seem anything but beautiful. I often write about the qualities of resilience -- control, commitment, challenge and connection. Lisa continually cultivated these qualities on her good days and on her difficult ones as well. I am grateful to Lisa for reminding me that it is always possible to find a bit of beauty in the world even if we need to create it ourselves.

So, in honor of Lisa, I am dedicating my blog posts for the next 10 days, as we countdown to spring,to sharing a bit of beauty that I find in the world...will you join me?

#10 Daffodils on the kitchen table

"Dying from Cancer is the Best Death" WHAT??? REALLY???

It has taken me several days to write a response to Dr. Richard Smith's post entitled "Dying from Cancer is the Best Death". The reason it took me so long is that I wanted to try to understand where Dr. Smith was coming from instead of viscerally reacting to his piece with incredulous disbelief.  I am not sure that I have fully sorted out my feelings, but I will attempt to add my two cents to the discussion which has exploded in the online space of social media since his piece was published last week.

First, I commend Dr. Smith for putting his ideas in writing, because I suspect he is not alone with his romanticized version of "death by cancer". I have no idea of his personal or professional story, the deaths he has witnessed, the road he has traveled with loved ones, but I can speak to my own experience and the cancers that were not "gentle" to my family members.  I return again and again to Dr. Smith's romanticized belief that once one has been diagnosed with cancer, you will have a period of time when you can revisit your life, repair relationships, travel, and reconnect with those things that gave you meaning, put your financial house in order and somehow when you have completed these tasks to your satisfaction, rest and call it a life. This may be true for some, but many who receive a diagnosis of cancer are not afforded this gentle trajectory.  

What Dr. Smith fails to acknowledge is the suffering that often accompanies a death from cancer. I am not simply speaking of adequate pain management for physical pain, but the existential suffering that often occurs with a death from cancer and other life-limiting illnesses. This cannot be palliated by a good dose of morphine and a shot of whiskey as Dr. Smith suggests.  I have witnessed my dad, an esteemed educator and academic, lose what he loved passionately-- the ability to speak, write,  read, and communicate with others as a malignant brain tumor robbed him, piece by piece,  of that which gave his life meaning. This is suffering.  I have witnessed my 14 year old son, diagnosed with an aggressive bile duct cancer, lose the things that gave his life purpose and meaning-- friends, playing the guitar, athletics, piece by piece as his life contracted, smaller and smaller, until his death.  This is suffering.  

Dr. Smith opines that cancer is the best way to die.  I hope each of us will use Dr. Smith's essay as a rallying cry, a wake-up call, to the fact that perhaps there is no "best way to die" but maybe a "best way to live"... by attending mindfully to those things that give our lives meaning and hope, in the present moment.  It is only then that we can let go of striving for "the best way to die".

WBUR Commentary: "The Children Who Didn't Survive"

I am both humbled and honored to be a new contributor to WBUR, Boston's NPR news station's Cognoscenti. Today my first piece, The Children Who Didn't Survive, was published. I would welcome your comments and feedback both on my blog and on the Cognoscenti site.

Each year, early in October, a letter arrives with the return address of Massachusetts General Hospital, 55 Fruit St, Boston, Mass. I know immediately what the envelope contains and I pause and reflect for a few moments before I open it. Inside is an invitation to return to the place where my son, Nick, was treated for a deadly form of cancer when he was 14. We, as a family, also spent many days, weeks, months in this place: crying and laughing; watching fireworks magically unfurl in the dark sky over the Esplanade from windows on the 18th floor of the Ellison Building; waiting in the subterranean operating room holding areas in the warrens beneath the hospital; exploring the empty hallways late at night like the actors in “A Night at the Museum”; holding impromptu guitar jams in Nick’s hospital room; and ringing in the new year with noisemakers, shrimp cocktail and sparkling cider with hospital staff who drew the short straw and had to work on New Year’s Eve.
Nick died 12 years ago, so why do I still return to this place each year? It is because Nick, like the other children who were cared for in this huge, often anonymous institution are not forgotten — they are remembered and honored year after year with the annual Pediatric Memorial Service. In this medical mecca, children are not supposed to die. We are fortunate to have some of the best and brightest medical institutions in the world at our doorstep. Reports of miraculous new cures abound in the media, but there are some children who are not the success stories that are highlighted in hospitals’ marketing materials. They are the children who didn’t survive.

Those of us who receive an invitation to return to MGH each year for the Pediatric Memorial Service are a disparate group. Some of our children died when they were adolescents, some when they were in early childhood. Some died from a chronic illness, some from an acute infection or disease, and others suddenly by an accident. We come from different walks of life and professions. We speak different languages. Yet, on this day, year after year, alongside the staff who cared for our children, the barriers are lifted and we are all together as human beings, remembering the stories, sharing a hug, speaking our children’s names, and trying to find meaning in loss. Collectively, we understand the unique grief of losing a child.

The author pictured with her son Nick in 1997. (Courtesy)
The author pictured with her son Nick in 1997. (Courtesy)

Early in my professional career as a nurse, I heard a young physician say, “I don’t do death.” I’m not sure what this statement really meant — perhaps that somehow his superior knowledge could forestall death permanently? — but beyond its arrogance, it spoke of fear and hopelessness. As a society we are very isolated from pediatric death. We are fortunate that in the span of a few short decades we have seen a dramatic decrease in childhood deaths due to vaccines, antibiotics, and advances in medical treatments. But this decrease has created a void in our health care professionals’ ability to know how to deliver care when finding a cure is no longer an option. Our medical and nurse training programs don’t “do death” well either, especially around societal taboos.
A physician at this year’s memorial service gave me hope for the future when she commented that her role as a doctor is to walk the journey with her patients and families and this includes the full spectrum of life and death. We look to our healers to cure us with the modern arsenal of medicine at their disposal, but when a happy ending is no longer possible, shouldn’t it also be their role to help guide us through the fear of the unknown and unthinkable, especially in pediatrics?
Perhaps learning to step into the full spectrum of life and death is the meaning that the children who didn’t survive bring to the practice of medicine. Our kids have become the teachers, no matter how short their lives may have been. Their legacy is to continue to teach the healers how to walk alongside those who are confronting the unimaginable and unbearable with grace, humility and humanity.

So, I guess I keep coming back to walk through the doors of Massachusetts General Hospital year after year to remember, share a story, and to say thank you for honoring these great teachers who keep medicine honest, healing and humble — the kids who didn’t survive.