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Appointment in Samarra*: Our Lives of Watchful Waiting


Watchful waiting has become a way of life for many of us.

Last week Sam had his first six-month scan following treatment for esophageal cancer.' '  It showed that that the original cancer had not recurred and that the tumors behind his eyes and the hot spots on his kidneys and liver hadn't grown.'  Sam and his wife, Sonia, are celebrating for a few days before they return to worrying, checking for symptoms and counting the days until the next scan.

The sound technician for my talk in Chicago this week recounted how, 17 years after his radical prostatectomy, he insists on having his PSA tested every six months, despite the one-year interval recommended by the guideline.'  'From the time the blood is drawn to when I get the results I'm still a wreck.'  And in between tests, my worry is like a pebble in my shoe'it's small, but it's always there.'

Usually we think of watchful waiting as a strategy recommended to people who have a condition that may or may not develop into something requiring medical intervention: a consistently elevated PSA, persistent debilitating back pain, an arthritic hip.'  The problem is checked by our doctor periodically to see if it is progressing and at what rate, with the intent of starting treatment only when and if it is clearly a threat or significantly erodes one's quality of life.However, this identical medical strategy is used widely to treat a growing number of people who also wait watchfully, although they are rarely thought by the medical establishment to be doing so. Sam and the sound technician are only two of the nearly 12 million people in the US who have been treated for cancer and are able to wait watchfully in large part due to the incremental success of cancer treatments.'  And there are others: people who have had heart attacks who are at increased risk for another; people with HIV whose viral load will likely one day cross the threshold to full-blown AIDS.

The event we await is not a certainty for any of us.'  Many of us live long and well with each of these conditions and diseases.'  Some of us die of different causes altogether.'  But the current of anxiety about what is to come runs through our days, sometimes palpable, sometime deep below the surface.

So what? Everyone's going to die of something sometime.'  Any one of us could be hit by a bus tomorrow.'  Well, yes.'  But watchful waiting post-cancer or post-HIV diagnosis or post-heart attack means that a bus that has my name on it may be headed straight at me and it is not clear that I am going to be able to leap out of the way. ' This makes us vigilant, slightly on edge, even when there is no bus in view.

What can we learn from observing or being part of this growing number of waiters?

For one thing, people respond to such uncertainty in very different ways.'  Some shut it out: if it happens, it happens.'  We have been sufficiently imposed upon by the experience of this disease or illness to date and prefer to 'jump off the (next) bridge when we come to it.''  We tend not to participate in monitoring and testing.'  Some people slowly get used to the uncertainty over time; the distress that accompanies the testing and any new symptom (like the fear that the headache might be a brain tumor) subsides.'  We construct a new life around the limitations imposed the condition and carry on, despite occasional flurries of anxiety and the occasional sleepless night.

Some of us find the idea of waiting in the face of an impending threat is too passive a strategy and we take matters into our own hands. We insist on surgery or medication now or we demand more frequent testing.'  We devise our own dietary, physical and mental regimens and employ a range of alternative medicine approaches in an effort to reduce the risk we face and reclaim some sense that we can control our future.

The manner in which we watchfully wait may shift as the meaning of our illness and its threat change over time.'  Despite our varied responses, however, we share more than just an undercurrent of anxiety.

Each of us has glimpsed the limits of science and medicine.'  As people who are by definition seeking to be made whole again through medical intervention, this is particularly sobering.

Most of us have had some experience with finding and using health care services by the time we arrive at a point of watchful waiting.'  This means that we might know more about how to obtain services, but this is no guarantee that we are wiser about making good use of them nor does it mean that we are more prepared to wait.

And every single one of us wishes that bus didn't have our name on it.

* Appointment in Samarra refers to an old Iraqi fable, 'Death in Samarkand.' This fable was retold as 'Appointment in Samarra' by W.'  Somerset Maugham in a short story in 1933.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman

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cinlander says
June 8, 2011 at 3:24 PM

Jessie's watchful waiting piece is an excellent view of the issue from the consumer as well as the medical side. When my co-authors and I wrote our book 100 Ways to Live to 100 one of the most interesting things that we discovered both interviewing over 50 centenarians and reviewing the medical literature was that the stress of having a chronic, or an acute condition, played a significant role in one's ability to overcome or live with a disease. EVERY single one of the 100 year old people we interviewed had all had serious medical conditions at various stages of their lives. Despite having cancer to heart disease, debilitating arthritis to serious injuries, all exhibited a positive attitude toward life and refused to let their condition define them. None called themselves a "diabetic" or "cancer survivor." Instead they were John or Mary or Richard or Isabel, individuals who happened to have a condition or conditions. One woman's comment was the most memorable to me. She was 102 and told me that each morning she got up, looked into the mirror and said, "I don't care what I look like in the reflection and I don't care what the medical reports say is wrong with me, I am going to enjoy myself today and look forward to enjoying myself again tomorrow!" Of course, we all do not or will not make it to 100, but if we let our conditions define us and we become overstressed by the fear of what the next medical test may say, we deny ourselves the great joy that life can offer us everyday.