An Expert in Fear

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Living With Cancer

Nothing instills fear like cancer: a sometimes unseen and unfelt but murderous presence inside the body that sets out to destroy the body.

At my diagnosis of ovarian cancer in 2008, I stressed about when and why and how it appeared, whether and where it would spread. Then I fretted through grueling regimens that seemed almost as appalling as the disease. Now, years later, each test continues to breed the angst that patients call “scanxiety.”

Cancer and fear go together like love and marriage or a horse and carriage: You can’t have one without the other. And fear of cancer fuels other fears related to the body politic; it makes me vulnerable to an all-pervasive fearfulness.

My British cousin Colin recently asked in an email: “Has anyone coined a word yet for the constant state of unease we are feeling about politics these days?” He was referring to Brexit in his country and the current administration in mine. Maybe he asked me because people dealing with cancer become experts in fear. Within the current climate of anxiety, my disquiet over cancer treatment, research and future patients’ quality of care ratchets up.

My alarm and that of many other patients with chronic diseases escalated with the latest plan to repeal and replace the Affordable Care Act. We fear proposals to slash Medicaid and higher insurance premiums for older citizens as well as those with pre-existing conditions. Doctors, hospital administrators and insurance companies have all opposed the legislation that the House passed last week, saying that millions will be harmed, including people who could avoid cancer altogether or be cured of early stage disease with prevention or detection measures.

In consultations with their physicians, a number of men and women currently in treatment are voicing qualms unrelated to their cancer-specific challenges. Dr. Reshma Jagsi, a radiation oncologist and ethicist at the University of Michigan, used to draw a line between politics and the clinic, but after the 2016 election she could no longer do so. In her recent article in JAMA Oncology, “From Muslim Registries to Radical Health Care Reform — Caring for Patients in an Era of Political Anxiety,” Dr. Jagsi states that patients have started to express apprehension about disclosing their religion on medical forms and about the shifting government resources upon which they can rely.

The current administration, Dr. Jagsi concludes, has “caused a wave of fear I have never seen before in my professional career.” Dread and panic have a detrimental impact on survival rates. A 2016 report in the Journal of Clinical Oncology on a research study on the impact of insolvency concludes: “Severe financial distress requiring bankruptcy protection after cancer diagnosis appears to be a risk factor for mortality.”

There is also concern about the future of cancer research – including the ambitious “moonshot” former Vice President Joseph R. Biden Jr. is leading. In the president’s budget proposal, funding for the National Institutes of Health would be cut by $5.8 billion, approximately 18 percent. Will promising investigations into immunotherapy, genetics, early detection tools, and vaccines, supported by the N.I.H., have to be scrapped?

The sense of helpless uncertainty that accompanies my experience of cancer is exacerbated by claims and counterclaims I read daily in the newspaper, charges and refutations that make it difficult to distinguish truths from falsehoods. Truth-telling has always been an urgent concern of cancer patients and their caregivers.

Just a few decades ago, physicians regularly refrained from disclosing a cancer diagnosis to patients or their relatives. Sick and dying people did not know whether they were getting the truth from their doctors. After a hard-won debate over the virtue of truth, oncologists are now trained not to misrepresent diagnoses and prognoses.

When it becomes difficult to untangle fact from counter-fact from counterfeit, I quake. I feel as if the ground under my feet is giving way.

Amid the facile circulation of untruths, what will happen to our society’s commitment to the authority of facts, of the often laborious accumulation of empirical evidence, and of the scrupulously attained findings of humanists and scientists? How might the erosion of our common dedication to truthfulness affect education in general and in particular the training of the future researchers, oncologists, radiologists, surgeons, technicians, and nurses upon whom patients will need to depend?

While I ponder these matters, my cousin Colin sends an email proposing a series of compound German nouns for the frightful environment we inhabit: AngstvollPolitick (apprehensive politics), BedenklichPolitik (alarming politics), UnglaublichPolitik (outrageous politics).

“Does the word have to be German?” I ask. He immediately responds: “No, not at all, but I thought it might make me sound intelligent.” That his answer cracks me up reminds me of how helpful language can be.

My cousin is right: We need new words. As I deal with a psychological affliction that I cannot call a neurosis or psychosis, I will keep on searching for the name of my condition. Today, it feels like meta-fear: fear of fear spiraling into vortexes of stunning trepidation. In malignant times, fear becomes metastatic.