Thursday, December 27, 2012

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.

Sunday, December 23, 2012

Elaine Update 12/23/12

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.


Thursday, December 20, 2012

Elaine Update - 12/20/12


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


Tuesday, December 18, 2012

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.

Friday, December 14, 2012

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.


Sunday, December 9, 2012

Elaine Update 12/09/12


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.