An Archipelago of Health Information Islands

Brian Klepper

Posted 12/27/12 on Medscape Connect’s Care and Cost Blog



My wife Elaine was hospitalized for 6 days recently with an array of ailments related to her advancing cancer, so diagnosing and addressing her problems required a multidisciplinary approach. In addition to the nursing and support staffs, she was tended by an emergency physician, two hospitalists, three gastroenterologists, a pulmonologist, an infectious disease physician and an interventional radiologist. With the exception of one specialist who had performed a procedure on her two weeks earlier, this episode was the first time any had met Elaine.

Elaine Update 12/23/12

Friends:

Elaine was discharged from the hospital late Wednesday afternoon. She came home with oxygen, heavy pain meds, antibiotics, and under strict guidance to not leave the house or have direct physical contact with visitors. Her immune system is compromised, and she needs a chance to recover.

She has a home health nurse who will visit regularly to monitor progress, and a therapist whose focus is on stabilizing heart rate, blood pressure and oxygen intake through exercise and breathing techniques.

But she's clearly better and has visibly improved over the past couple days. She's breathing much easier now, and has significantly less pain from her incisions and in her chest. She's gradually becoming more active and is less winded by getting up and walking around the house.

Two weeks ago her normal weight dropped 4 lbs, to 114. By the time she was discharged from her most recent hospital stay, her torso and legs were very swollen from the infused fluids, and her weight had risen to 128. She's metabolizing some of that now.

It is important to distinguish between the broader problem of the cancer and the ravages of the cancer's spin-off acute conditions. The bile duct obstruction was in some way generated by the cancer's spread. It is less clear at this point whether her lung issues were directly related to the cancer, or were related to her bile problems and their management. In any case, it is possible that she will regain her strength - even if it is back to a new normal - and that the immediate future may be characterized by periodic brushfire illnesses.

She has thrived at home, and has already regained enough vitality that she's reading, doing some light paperwork and wandering around the house on her own. She's back to wisecracking - usually at my expense - and being her old self. On several occasions, visitors have inadvertently stepped on the oxygen tube that snakes across the room. This breaks up the tension and is always good for some gallows humor.

Our next step will be developing a targeted treatment plan with the doctors and researchers who have helped us be successful so far. We are still uncertain what that will look like, but the approaches are likely to include alternative, palliative approaches that are scientifically credible and promising but not yet fully proven.

As always, we thank you for your kindness, support, and for always being there for us.

Brian

Elaine Update - 12/20/12

Friends:

Difficult news. Yesterday the lab results of Elaine's bile duct brushings revealed cancerous cells. This is evidence that the cancer that began in her peritoneum (abdominal lining) is spreading. It signals a new ominous phase of her disease.

At this point we have no idea where else the cancer may have invaded, how far it has progressed, or what any of this means for Elaine's prognosis. Undoubtedly we'll get more information over the next days and weeks. 

The last month has been extremely unpleasant. Elaine has been hospitalized for the past six days. On Tuesday, she had her 4th procedure in 19 days, as an interventional radiology team removed more than half a liter of fluid from the pleural lining of her right lung. In the previous 36 hours, her fever rose and the pain in her chest, side and back intensified to a crescendo. Draining the fluid relieved her fever and pain, but left her exhausted.

The cytology report should help us understand whether the extracted fluid is the result of an infection or malignancy. At this point, Elaine is short of breath, and the fluid continues to gather, which could be long term problems. We’ve had conflicting counsel on this.

Elaine's physicians – Drs. Petersen and Corregidor (Gastroenterology), Huff (Emergency Medicine), Schoonover (Pulmonology), Kapoor (Infectious Disease), Shah and Bartfield (Hospital Medicine) and Spohr (Interventional Radiology) have been systematic, communicative and excellent, working together as a team, and we've been grateful for and gratified by this. All information flows to the hospitalists, who have also been in touch withElaine's primary care doctor, Rick Glock, and oncologist, Steve Buckley. It’s wonderful when you see medicine work like we know it can.

There is still much we don't know about her illness or the plan going forward, but those will be clarified in the next days and weeks.

Over the past 32 months, we have tried to face Elaine’s illness directly and optimistically. Times like these test our resolve, though.

Thanks for being there. You can reach Elaine at ewaples18@gmail.com.

Brian

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.

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.

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.

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.

Is My Cancer in the Wrong Body Part?

Elaine Waples

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.

Hello? It's Your Body Talking!

Elaine Waples

Posted 2/16/12 on Care & Cost

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.