Friday, September 21, 2012

Getting Engaged


Elaine Waples


We hear inspiring things about patient engagement. The very concept has a hearty, spirited, “do-right” sound to it.

  • Engaged patients should believe the treatment they are getting is right.
  • They should feel a strong commitment and trust in the doctor(s) and treatment centers where they receive care.
  • They should believe that what they are doing is meaningful.
  • And they should be willing to do whatever it takes to get better or survive.

Friday, August 31, 2012

Attitude


Elaine Waples
Posted 8/31/12 on The Doctor Weighs In
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..
And, for the record, I have probably said every single one of them myself at one time or another.
But as the recipient of them after my diagnosis and subsequent chemotherapy for metastatic primary peritoneal cancer, I felt like I was listening to some foreign language. I have even questioned if I really said some of those things that now make me feel like Charlie Brown listening to his mother’s distorted ..wah,..wah…wah…
I’ve heard excited reports from people who said they knew a person who had exactly (strong emphasis on “exactly”) what I have and “she’s been just fine for 20 years.”
There was nutritional advice about macrobiotic foods and nutrient-packed pills proven to boost my immune system, heal the cancer, and prevent a recurrence.
There were definitive cries that a cure is right around the corner and the admonishments to “hang in there” because I can “beat this.”
And finally, the joyous observation that I possess a great attitude and, “after all, attitude is half the battle.”
I have smiled through them all, gritted my teeth and saved my complaints for my long suffering spouse. He hears them at night as I cook. With frying pan in one hand and waving wooden spoon in the other, I rant. It usually goes something like this.
A person who had exactly what I have? Really? You know a person with the identical genetic makeup, DNA mutations, family and medical history, blood type, allergies, and stress levels as me? I don’t think so!
Slimy green smoothies that taste like mud for breakfast every morning? Or bazooka sized pills that are sold on-line, packaged in a foreign country, and advertised with teeny tiny print that mentions a lack of FDA approval or clinical data will save me? No!
And, a battle? Do I look like I’m wearing boxing gloves and a helmet? What if I don’t “beat it”? Am I a failure? The cure around the corner? Haven’t they read about the decades of efforts by scientists who have been barking up most of the trees in the forest only to find out they were wrong?
But the last one has always been the toughest. Attitude! According to most people, my good attitude is “half the battle”.
“So, let me get this straight.” (I say this with the help of an air-jabbing spoon.)“Fifty percent is surgery, chemotherapy, needles, blood draws, hair loss, fatigue, digestive nightmares and the other half is attitude? What about the people walking around with rotten attitudes who smoke and eat corn dogs? They are just fine.”
It has taken a few months (hmmm, maybe two years) to reconcile myself with all this. Especially that last one. I have to admit that it took time for me to get grounded in the attitude thing. It also helped to have my husband’s good counsel, usually in the form of “honey, c’mon…knock it off”.
It’s really so simple that there should be a lightning bolt hanging over my head to remind me that attitude isn’t about what’s happened to me. It’s all about how I handle what’s happened to me.
It helps to remember that the flag wavers of hope and advice are well meaning people. They care about me and they want desperately to offer some contribution to my staying power. When they tell me I look great and they are glad to see that I’m back to my old self, they mean it. I believe they also know the unspoken truths, like sometimes I really don’t feel well, that ongoing treatments are miserable, that this is remission only and that there is real worry about my future.
But it is important for me to smile and say “I’m doing just fine.” It is the right thing for that moment. It makes life OK, and normal, and sociable, and happy. It helps people believe that I’m strong and intrepid and maybe their advice and anecdotes encourage me to have faith. It helps me to see the joy and pleasure on their faces when I say “thanks, I’m good.” For my doctor, despite the fact that he knows the odds, it lets him know that I’m OK that day.
For my husband, who always knows the truth about me, it sustains the laughter, jokes, honest talk, patience and tolerance that makes us say we have never been happier.
I hope it’s a good “attitude.”
Elaine Waples is a 27-month cancer survivor surviving with her long-suffering husband Brian Klepper in the beautiful beach community of Atlantic Beach, FL . She paints, does yoga and strives to have a good attitude.

Wednesday, July 18, 2012

Is Genomic Medicine Clinically Useful Yet?


Brian Klepper

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.
But the science is clear that cancer is really many diseases, with hundreds or thousands of different configurations influenced by heredity and environment. It presents massive complexity that likely isn’t susceptible to silver bullets. This fact is underscored by the wildly variable efficacy of current therapies, both in different forms of cancer and between patients with the “same” cancer. Diagnosed with thyroid cancer, your chances are great. Pancreatic, not so much. Or not. Uncertainty rules.

Friday, June 8, 2012

Old Puzzles, Busy Guys and New Science


Elaine Waples
I am a two year cancer survivor, in remission, feeling good, and focusing on a quality of life that I perhaps took all too much for granted in the past. But like all cancer survivors, I worry about what may be happening inside my body where mutant cells and dormant micro-tumors might be taking up their opportunistic work again. I try not to dwell on it, but there is the ever-present question about what to do if there is a recurrence.
My husband and I have learned that cancers – even cancers with the same name – behave differently before and after treatment. While our doctors help us through the storms of illness, it is unreasonable to expect them to constantly research all possibilities in a world of head-spinning new science.

Monday, June 4, 2012

Cancer Survivor on N-of-One’s Direct-to-Patient Ombudsman Model

Kevin Davies
Posted 5/31/12 on Bio-IT World
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.

Saturday, April 7, 2012

Four Perfect Questions


Elaine Waples
Posted 4/07/12 on Care & Cost
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.

Tuesday, March 20, 2012

Marcus Welby, House and the Wizard of Oz


Elaine Waples
Posted 3/20/12 on Care & Cost
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.