Saturday, March 9, 2013

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.

Thursday, January 17, 2013

Hospitals: Are We All Talking

Hospitals: Are We All Talking?

Elaine Waples
Elaine Headshot 11713Complications 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.

Tuesday, January 8, 2013

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