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.