Truth at the End of Life

Elaine Waples

Posted 3/5/13 on TEDMED

Elaine Waples and Her Husband, Brian Klepper

Most of us have spent some time thinking about our own deaths. We do it with a sense of dreadful curiosity, but then we push it aside with “well, we’ve all got to go sometime.”

Unlike most people, I probably know the how, the why, and maybe even the when of that event. It is profound information that turns the world upside down for us, our families, friends and caregivers.

I have cancer that is incurable, aggressive, and has negligiblesurvival odds. My chemotherapy is a long shot. I will leave a spouse, children, siblings and a life that I love and cherish. I cannot imagine existence without them.

Hospitals: Are We All Talking

Hospitals: Are We All Talking?

Elaine Waples

Complications from my cancer sent me to the hospital again recently. The news that I was in trouble came unexpectedly from my oncologist’s office Thanksgiving eve, following a routine blood test. “Your liver numbers are out of whack.” My response was “Really?” as if I’d been notified that my driver’s license had expired.

I was diagnosed with a blocked bile duct and I missed the turkey and cranberry sauce. My oncologist called in a gastroenterologist, who scheduled a procedure to open the blocked duct. But my tissues were too distorted to complete the procedure, so the next day an interventional radiologist inserted a bile drain. I met him seconds before I drifted into sedation. When it was over and I was awakening, he offered me a cheery “good luck” as I rolled out the door. I never saw him again.

Elaine Update - 1/08/13

Family and Friends,

It has been 7 weeks since we received a call telling us that Elaine's liver values had skyrocketed. That call foreshadowed a relentless cascade of events, beginning with three procedures aimed at propping open and draining her blocked bile duct. The last of these was followed 24 hours later with an emergency visit that found pneumonia and a pleural effusion (i.e., an accumulation of fluid in the lining of the lung). These issues precipitated a 4-day hospital stay and another procedure that removed more than half a liter of fluid from her lung.

We are now almost 3 weeks post-discharge. Elaine was sent home with oxygen, heavy pain meds and home health visits, and I began to despair because she didn't seem to be gathering strength. Then, to my surprise, she turned a corner in the past couple days. Sunday we went to the movies, our first outing since all this began. Yesterday we left the house at 11am and didn't arrive home until 5pm. A week and a half ago, Elaine couldn't have physically managed this.

We met with our Gyn Oncologist Steve Buckley yesterday. The PET/CT conducted last Friday found no large masses. While recent labs found cancer cells inside the bile duct wall and in the fluid drawn from the pleural effusion, at this point there is no evidence of tumors inside either the liver or the lung. There was a small nodule outside the liver, in the abdomen, and there were some other "hyper-metabolic" areas - cancer cells have a higher metabolic rate than normal ones - but nothing yet appears to be advanced. Dr. Buckley interpreted this as very good news, in the sense that the cancer's progress is still early enough to be susceptible to being knocked back.

We were surprised by this news. We had prepared for the worst.

We should be clear here. Elaine in no longer in remission and the cancer has recurred. Cancer cells have spread from Elaine's abdomen, where they originated, to her liver and lungs, and probably, therefore, throughout her body. She is likely, over time, to suffer periodic, unexpected acute bouts that can manifest in many different ways. She will almost certainly struggle with it for the rest of her life. 

But it is also still possible that her cancer can be impacted and its ravages delayed, by applying an array of targeted remedies. Cancer appears to be a disease of genetic mutations, a multi-headed hydra. The goal is to try to gain an edge by incapacitating several heads at once. Or at least that's the theory.

With Dr. Buckley, we are now in discussions with a number of authorities around the country on next therapeutic steps, which may include chemo-therapy. It is no small thing to be cared for by a physician as open-minded and progressive as he is, but this is one more way we feel fortunate in this very difficult situation. 

We are wary of approaches that will rob her quality of life for months and that the data show adding only a few months in exchange. Still, most of these studies have used patients with a tremendous range of cancer status. By contrast, Elaine's is relatively early, and the main of her strength is likely to return. It is reasonable to interpret this as a significant possible advantage in her struggle.

Family and friends have come out of the woodwork, asking how we're doing and whether there's anything they can do. Fortunately at this point, there isn't much, but knowing that people are available is a great comfort.

The take-away of this update is that, at least in the short term, things may be better than we thought. We still face some very difficult and complex treatment decisions. And we're uncertain about much of what's going on here. But at the same time, its possible we might have a few months of calm before the storm strengthens again and that's time we can have together. And that, after all, is the point.

Thanks again for being there with us through this.

(E &) B

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.