Elaine Update - 12/18/12

Yesterday Elaine had her 4th procedure in 19 days, in which a small tube was inserted into her chest cavity to drain off the accumulation of more than half a liter of fluid. This is normally very painful, and the nurses pre-medicated her with a whopping dose of 4mg of morphine.

Elaine has been very ill. She had severe and intensifying pain in her chest, sides and back since Saturday evening that built to a crescendo Sunday, and the removal of the fluid produced a marked change. She said it hadn’t been as painful as she expected, and her entire appearance brightened and calmed in the hour after her return.

Monday was a very productive day, and we felt that the clinical team was systematically getting a handle on the issues. We saw the pulmonologist who ordered the drain. A gastroenterologist who had reviewed Elaine’s labs and scans reported that her liver functions were normalizing, very good news indeed. An infectious disease physician did a thorough interview, and hypothesized several theories of her disease, the most likely that seepage from the trauma to the liver area had migrated upward, through the diaphragm and generated the lung infection. That said, by no means have we ruled out the influence of metastatic tumors.

The work of all these physicians is being actively coordinated by the hospitalists managing her care, who in turn is directly in touch with Dr. Glock, our primary care physician. When asked about how much longer she’d need to remain hospitalized, Dr. Shah, one of the hospitalists, said that it would depend on whether her infections and fever subsided and normalized.

The looming question is how these events relate to her cancer, and whether there are signs of metastases that signal a new phase of her disease.

While the uncertainty is difficult, we should know more in the next few days.

Elaine Update 12/14/12

Dear Friends:

Elaine just arrived home from her follow-up procedure. Dr Petersen, the gastroenterologist who implanted the trans-hepatic drain two weeks ago, removed it and successfully implanted a metal stent in the bile duct, propping it open so the bile can flow properly into the gut.

He said it was a very difficult procedure because the tissue of the duodenum and the top of the bile duct remains severely distorted, presumably from pressures exerted by external tissue. He scraped the inside of the duct to get cell “brushings” that were sent to the lab, but noted that they may not be “diagnostically productive.” In any case, we probably won’t get results until the middle of next week.

Today solved a very important problem by unblocking the bile duct. NowElaine’s team must decide how best to determine the nature of the tissue that is distorting the anatomy, and what to do about it. My understanding was that it could be metastases, but until that is nailed down that is only speculation.

Elaine is well but very groggy from the anesthesia, and she has pain in her right side and back from removing the drain. Our understanding (and hope) is she’ll be over the worst of it by the end of the weekend.

It’s clear, though, that there’s more to do in the near future.

We thank you for the overwhelming attention and warmth.

Brian

Elaine Update 12/09/12

Friends:

It has been a difficult couple weeks, but Elaine's pain has subsided quite a bit, her strength has slowly returned and she is now able to get around and take walks again. She got a haircut and we went to the grocery store yesterday. Tomorrow we’re contemplating venturing out to a movie.

There’s nothing pleasant about having a bile bag attached to your side. Her appetite was severely knocked back and she’s dropped about 5% of her weight. There have been the inevitable frustrating moments when one of us has overturned something on the bedside table or something goes awry with the care. We’ve discovered some new washing techniques and have found that simply moving through and dispatching each situation is the best, just as in the rest of life. Throughout all this Elaine’s remained buoyant and steady. She’s been indulging in ice cream, which is great, and I’m developing menus that will plump her back up.

She has another procedure this Friday to remove the drain, implant a stent in the bile duct, and take "brushings" that should help us determine whether the source of the blockage was a metastasis or something else. We're still a little on edge about that, but all in all grateful that we appear to be on the downside of this episode.

Thanks so much for the outpouring of good wishes, which have been wonderful salve as she’s gone through this.

Brian

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.