Most of us have spent some time thinking about our own deaths. We do it with a sense of dreadful curiosity, but then we push it aside with “well, we’ve all got to go sometime.”
Unlike most people, I probably know the how, the why, and maybe even the when of that event. It is profound information that turns the world upside down for us, our families, friends and caregivers.
I have cancer that is incurable, aggressive, and has negligible survival odds. My chemotherapy is a long shot. I will leave a spouse, children, siblings and a life that I love and cherish. I cannot imagine existence without them.
Complications from my cancer sent me to the hospital again recently. The news that I was in trouble came unexpectedly from my oncologist’s office Thanksgiving eve, following a routine blood test. “Your liver numbers are out of whack.” My response was “Really?” as if I’d been notified that my driver’s license had expired.
I was diagnosed with a blocked bile duct and I missed the turkey and cranberry sauce. My oncologist called in a gastroenterologist, who scheduled a procedure to open the blocked duct. But my tissues were too distorted to complete the procedure, so the next day an interventional radiologist inserted a bile drain. I met him seconds before I drifted into sedation. When it was over and I was awakening, he offered me a cheery “good luck” as I rolled out the door. I never saw him again.
We hear inspiring things about patient engagement. The very concept has a hearty, spirited, “do-right” sound to it.
I spent many years in human resources. I remember the conversations we had around employee engagement as we searched for a practical approach. We realized that it is the employees’ belief that the company is moving in the right direction; that the work they do is meaningful and that they are committed to it; that the trust index of respect, credibility and fairness is high; and that employees are willing to work hard to help it get there.
I’ve come to believe that seriously sick people are often subject to some very interesting comments from well-intentioned non-sick people. They are frequently inspired by #platitudes from self-help-books, Google chat rooms (heaven forbid), or beliefs that have been around for so long that they are a natural part of common discourse.
To be fair, when we are confronted with the uncomfortable task of talking to a sick person, our conversation can easily become a pre-programmed response that make us feel better for having said something uplifting, positive, sympathetic, or socially acceptable. It’s antiphonal, like the “god bless you” after someone sneezes..
Posted 7/16/12 on Medscape Connect’s Care and Cost
The news of my wife Elaine’s primary peritoneal cancer 27 months ago began a fevered effort to learn all we could about her disease and our options. Peritoneal cancer, which is close in form and behavior to ovarian, is rooted in the abdominal lining. “Gold standard” treatments notwithstanding, the prognosis isn’t good. After a 12-36 month remission in which tumors are inactive, the disease generally returns, and a high percentage of women are gone within 5 years of diagnosis.
Cancer elicits a primal fear that can provoke fantasy and baseless speculation. Cancer patients in remission have told us they are cured. Others, well-meaning, have announced they know someone with “exactly what you have,” and that theirs went away by applying a strict dietary or spiritual discipline.
The long-term success of N-of-One, a Waltham Mass.-based company offering personalized cancer information, will undoubtedly be shaped by the vision of its newly appointed CEO, Christine Cournoyer, and strategic partnerships with companies like Foundation Medicine, announced this week.
But ultimately it comes down to whether the company’s original direct-to-patient strategy works for cancer patients like Elaine Waples.
In the fall of 2010, Atul Gawande, surgeon at Brigham and Women’s Hospital in Boston and an associate professor at Harvard Medical School, delivered a touching speech at the October New Yorker Festival. My husband attended with a friend and, because he said it so profoundly impacted the audience, I watched it myself on video the next day. It was indeed amazing. Dr. Gawande, author and national health care presence, spoke unabashedly about his lack of skill in conducting end-of-life conversations with his patients.
At a recent dinner party my husband and I joined two other couples in a lively discussion on the frustrations of American health care. We rounded up the usual suspects – cost, quality, access, politics, and broken systems. At some point the conversation took a subtle turn and we began to talk about the doctor-patient relationship.
Before long, I offered a comment that I probably wouldn’t have made before my last two years of serious doctor-going. I said that some patients want their doctors to be a combination of Marcus Welby, House and the Wizard of Oz. They want a great bedside manner, a brilliant diagnosis, and a miraculous solution. And I suspect that doctors want their patients to be compliant, accept a possible imperfect outcome, and have enough insurance to cover it all.
Recently, our city hosted the fifth annual national marathon to fight breast cancer. This is not part of the Komen “race for the cure” but rather a grassroots effort that mushroomed from its inception five years ago into the impressive event it is today. Thousands of people participate as runners, volunteers, and cheerleaders clad in the signature color. I must admit, seeing some grown men run twenty six miles wearing pink tu-tus is both awe inspiring and a testament to dedication over self-image.
It’s supporters include corporate sponsors, vendors, and exhibitors, and (no surprise) pharmaceutical companies. Its originators are a local TV celebrity breast cancer survivor and a cancer physician at Mayo clinic. It promises to donate 100% of the money to breast cancer research or care. To date, the event has raised millions of dollars and has met its contribution promise. It’s all very worthy, noble and heartwarming.
Brian’s Note: For the uninitiated, Elaine – aka “The Boss” – is my wonderful wife, and this is her debut on C&C. As you’ll see, she’s a comfortable writer. Her message here is hugely important, and was made all the more so by persistent diarrhea. The big point, though, is that the same principles really apply to us all. Enjoy.
Our bodies are pretty savvy in sending us messages about taking care of ourselves. Most of the time the messages are simple and informative. Like when we’re tired, we get a signal that tells us to go to sleep. Occasionally they are a slap on the head because we’ve done something stupid. These come in the form of things like muscle strains, hangovers, or sunburns. Then there are the warnings that alert us to things that just aren’t right. They make up the lists of maladies we commonly refer to as symptoms. The real question is how much attention we pay to them and what we do about them.
My epiphany happened after my body had been delivering a cautionary message for over a year. I was having some very annoying digestive problems following months of chemotherapy. To put it politely, food was traveling through my system like an express train. Since chemo is the granddaddy of side effects, I just assumed my system had been compromised and there wasn’t much to be done. Nevertheless, every meal had me worried that I would spend some unpleasant time in the bathroom. I didn’t want to eat out because almost all restaurant food caused misery.
My wiseacre wife Elaine, unable to resist such a delicious opening, offered the following as a retort:
I have always thought that meds’ ridiculous names sound like some medieval story.
Once upon a time, King Zocor and Queen Zetia ruled over the tiny kingdom of eastern Niaspan. One day they were attacked by an army of evil Lipitors who were in search of hidden treasures. But King Zocor called out his army of giant Vytorin warriors who crushed the Lipitors. The king bestowed the highest honor, the order of the Crestor, upon his army and they all lived happily ever after.
Stay tuned for the story of the three headed Torceptrapib.
PS Do taxane and carboplatin maybe sound like fossil fuels?
A little more than 13 months ago, my wonderful wife Elaine was diagnosed with stage 3c primary peritoneal (ovarian) cancer. So the last year has been filled with the ravages of chemo-therapy and all the miseries that attend it.
A devastating diagnosis like this forces you to reassess everything. What we found was that attitude and perspective really do matter, and are the bedrock of happiness, in good times or bad.
Last week my wife and best friend, Elaine, had massive abdominal surgery. We fully expected her to be an inpatient for a week, but she was home in four and half days. To watch her recover was to see what happens when everything converges: the deep knowledge and skills of excellent, humane physicians; a capable, caring clinical staff; wonderful new technologies; and a lifetime of eating right, being fit and tending to one’s health.