Elaine Update 11/29/12

Dear friends and family:

Elaine just finished her 2^nd procedure in as many days and the news is much brighter than yesterday’s message  The interventional radiologist inserted an “internal/external” drain through her skin and through her liver, then threaded it into the bile duct, reopening the passage so the bile could drain. (Elaine was mildly sedated but awake through this, and watched on a monitor.)

Over the next few days, her pallor, which has been the color of a ripe banana, should return to normal. As the bile flows freely again, her ducts, which have been swollen and dilated, should subside. Things should get much better.

The question now is what caused the blockage. The team was unable to take “brushings” of the cells for evaluation during this procedure, because the site is inflamed. They’ll do this when the drain is removed. Elaine’s history means that the top candidates are metastatic tumors. But her PET/CT 5 weeks ago was negative, and the CT done a week ago showed no masses. So there could be other explanations: scar tissue, a stone that nicked the duct as it passed, or some completely new condition.

Elaine’s physician team has agreed that the best path now is to let her bile ducts “cool down” over the next couple weeks before the next step of trying to determine the source of the obstruction.

The good news is that Elaine remains in good spirits. She is alert, mostly comfortable and, other than being horrified at what’s coming out of the drain, in good shape. It appears now that she can go home tomorrow afternoon.

Feel free to email her at ewaples18@gmail.com, or call at 904.993.8185.

Thanks again for hanging in there with us.

Brian

The Granny Plan

Elaine Waples


It’s no surprise that Americans are tilting the scales in the wrong direction. We are straining our waistlines and health coverage beyond the limits.

Unfortunately we live in a culture that promotes it.

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.

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.

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.

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.

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.