Editor's Note
The Burden of Survival
The wheels of his walker squeaked as he slowly walked into the exam room. That he was walking at all was miraculous. During two months of hospital hell, with cardiac surgery followed by respiratory and renal failure requiring prolonged ventilation and dialysis, he lived with tubes at the cusp between life and death. And here he was, without tubes, walking. As he answered my questions about pain, dyspnea, and appetite, his voice got quieter and, finally, tears filled his eyes. He had survived major surgery with a mare’s nest of complications, and most would expect elation rather than depression. But now he needed to survive his survivorship.
Major illness is a wrenching disruption in a life, a jolting journey from the land of the well to the land of the sick, a move from personhood to patienthood. Returning to health can be rocky as well. Pain and fatigue can linger, but the psychological wounds frequently heal the slowest. Again and again I have seen patients weather a major illness with courage and apparent equanimity only to meet depression and despondency, even though they are clearly recovering. It may be days or weeks or months, but suddenly when they have the mental space to reflect on what happened to them and understand how close they came to death, they realize that, even if their incisions heal and no trace of their acute illness remains, they will never be the same. In fact, most patients who suffer major illness are never truly free of the underlying disease. Unlike treatment of most pneumonias, true cures with no residual effects are rare. Once your heart attack is over, you still have coronary artery disease. The operation that removed your diseased colon did not leave the abdomen you were born with. Disease changes lives, and the disease with the most impact is cancer.
Certainly people are “cured” of their cancer in the sense that they never get a recurrence of their original cancer; but more and more, the “five years and you’re cured” standard that gained currency 40 years ago has undergone modifications. Recurrences for many cancers know no timetable. And even if the original cancer never resurfaces, the long-term effects of chemotherapy and radiation on the heart (p. 40) and immune system can define a survivor’s life for years.
As more cancer survivors live for years and decades, medicine has realized that they need special attention, tracking the potential side effects of previous treatments such as bone marrow transplantation (p. 45) or helping them enjoy the best quality of life possible through complementary medicine treatments (p. 8) or exercise (p. 12). Some patients can survive their medical problems only to be buried by the tangle of insurance and legal issues that seem to accompany a journey through today’s medical world (p. 6). Recovering from a major illness such as cancer doesn’t finish with the last stitch removed, the last chemo bag hung, or the last radiation zap.
My walking miracle of a patient continued to improve with glacial slowness. With a tincture of time and Prozac, he eventually shed his walker and is leading a fairly normal life. But as he walks, he still hears the drumbeat of his days of tubes.
Charles R. Meyer, M.D., editor in chief Dr. Meyer can be reached at cmeyer1@fairview.org