June 8, 2017
Because ovarian cancer initiated a stealthy assault before I discovered it, it seems the clear aggressor, and I the injured party. Yet as my physicians use their weapons to counterattack, collateral damages mount. Fatigue envelops me.
Sometimes the arsenal deployed against recurrent cancer feels like overkill. Often I wonder what will happen if and when the drug of the clinical trial in which I am enrolled fails to keep my cancer at bay. Will I have the resources to undergo surgery or chemotherapy again?
Paradoxically, rigorous medical protocols can steal some of the time they give us. A small quantity of life may be gained at the expense of a sometimes degraded quality of life. Enormous energy must be spent getting to the hospital, completing paperwork, waiting for vitals and blood work and the oncologist, preparing for scans or radiation, undergoing infusions or transfusions, lining up at the pharmacy, and tackling insurance red tape. Periodically, surgical procedures further weaken a patient sent home with a drug arsenal to offset gruesome side effects — the most prominent being pain, nausea and weakness.
Consider this scenario playing out over years — with no end date set for the tour of duty — and you will understand why besieged patients suffer treatment fatigue. Is treatment fatigue like combat fatigue? The enervation of chemotherapy and radiation — both derived from warfare technologies — demoralizes us as regimens multiply and at times it seems impossible to go on. Does treatment fatigue explain the gung-ho rhetoric that bombards cancer patients and that many of them deploy?
At a conference for ovarian cancer survivors that I attended, every “teal warrior” – teal is the color associated with ovarian cancer — encouraged herself to maintain “a positive attitude” and lauded others for “bravely battling and beating” their disease. These women had endured major insults to the body with extraordinary dignity. Yet their militant commitment to victory seemed at odds with their statistical chances of surviving. (About 45 percent of ovarian cancer patients survive the five-year marker, far fewer at Stage 4.) Had their doctors failed to level with them or had they repressed the prognosis? A number of those treated for late stage disease believed that they were or soon would be “cancer free.”
When I was given a diagnosis of advanced ovarian cancer, the only person in my family who believed I could become “cancer free” was my aged mother. The rest of us attributed her optimism to desperate wishful thinking. Sometimes, refusing to acknowledge the severity of an illness can make the patient feel obligated to fight it. Rather than disabusing my mother, I colluded in a fantasy that comforted. I was determined not to take that solace from her.
For some people, denial serves as a life preserver. And some may channel a passionate determination to beat cancer into working to help others. One reader wrote to tell me about such an experience: He formed an organization to help disadvantaged patients cope with complex and expensive health care problems.
I honor such activism, but at the conference I silently wondered: Were participants bamboozled by an American brand of you-can-do-it-against-miserable-odds individualism? Or maybe it is nearly impossible to continue submitting oneself to debilitating procedures without hyped hope in their triumphantly restorative powers.
The titles of many cancer books maintain the upbeat martial language of the conference participants: “Knockout,” “Beating Cancer With Nutrition,” “A Cancer Battle Plan,” “You Can Fight Cancer and Win,” “Defeat Cancer,” “Fighting Cancer With Knowledge and Hope.” Such a narrative may work with curable cancers. Even in these cases, though, the generals with the big surgical, chemical and radiological weapons are doctors, not patients. But my hesitations about warfare language go beyond that objection.
Are patients enjoined to vanquish their multiple sclerosis? Are they encouraged to rout their emphysema, A.L.S., rheumatoid arthritis or the macro-degeneration of their eyes? Why is this bellicosity so prominent with regard to cancer?
Perhaps one reason for militant cancer language relates to treatment fatigue. It takes grit to subject oneself to injurious rays, toxins and excisions, especially when they harm an existence extended for only a limited period of time. The tedious repetition of successive interventions wearies worn patients. Physicians and relatives must feel the need to rouse the demoralized foot soldier. The worse the prospects the louder the drumming. Consider the alternative, recurring patients are periodically warned.
While dealing with a chronic or terminal condition, however, some people decide to reject medical options that damage the life left to be lived. Those who cease and desist should not be considered cowards, deserters, losers or quitters. Conscientious objectors, they have made their separate peace — if not with cancer, then with their living and their dying. Wearied by treatment fatigue, they want their remaining days or months to consist of more than a war against cancer. They want to consider the alternative.
I am not yet in this place. But I honor those who decide to lay down arms. Deborah Cumming, who died of lung cancer, wrote that she believed that “cancer is an insistent opportunity to learn that in dying we are alive, in living we are dying.” She felt that a “good attitude” is not about “fighting, conquering, winning. It’s about the daily thankfulness. And about peace, not war.”
When coping with metastatic breast cancer, my friend, the pioneering gender studies scholar Eve Kosofsky Sedgwick, acknowledged that she longed to hear four simple words,
“You can stop now.”