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Living With Cancer: The Husks

Before I travel to my mother’s funeral, I need to deliver the husks of a week’s-worth of blister packs to the Indiana University Simon Cancer Center. Every Tuesday I bring the empty packets in a paper bag to be exchanged for the next week’s-worth of pills. After a number of tests, the nurse-administrator of the clinical trial reminds me to down four capsules in the airport and not to eat until I get inside the nonstop plane taking me toward the cemetery, where my father and maternal grandparents are buried.

Living With Cancer

Living With Cancer

Susan Gubar writes about life with ovarian cancer.

Given my mother’s flight from Hitler—alone with her baby son on a long ocean voyage in 1938—it seems miraculous that she will be buried in a Jewish cemetery, surrounded by those few relatives who also managed to escape an unmarked death in Nazi Germany. Yet I worry about her remains, which must be shipped from Bloomington to Indianapolis and then via Atlanta to Newark and then, by means of a local funeral home, to Paramus, N.J. Did the funeral director properly secure her in cargo? Would she arrive in time at the right place? Would I arrive in time at the right place?

At the luggage counter, I ask about the blister packs: can they go through security in a carry-on or should I check them into a suitcase? My dearest possession on this trip, the pills must not be confiscated. “Ah,” the attendant at the counter says, “I was in a cancer trial where there was a tiny computer chip that recorded my opening each vial. These will go through just fine.” With that special buoyancy of people who have endured a fraught experience, we wish each other well. But as the plane takes off, I brood over her comment that she is “hanging in there” until her next scan.

I have no idea if the experimental drug I am taking for a cancer that has recurred three times will prolong my existence. But I am grateful to the drug company that is undertaking the trial. Such trials are expensive, time-consuming, logistically complicated, and not necessarily profitable either in terms of advancing science or making money. Especially for cancers that afflict smaller populations, financial considerations can limit costly pharmaceutical research. Also, research and development in large pharmaceutical companies favors well-understood diseases. Although ovarian cancer is the most deadly of gynecological diseases, no new single-agent drug for platinum-resistant ovarian cancer has been approved by the F.D.A. in the twenty-first century.

As the plane starts circling over Pennsylvania, put on hold by a storm in New York, I fret over the drug shortages that many patients have recently decried. Certain phrases escalate my anxieties: “factory incapacity,” “lack of raw materials,” “quality control problems,” “distribution issues.” And the astronomical costs of some brand-name, newly approved drugs make them prohibitive for many people. Dr. Otis W. Brawley, chief medical officer for the American Cancer Society, has said that the costs of branded drugs in the United States are 70 percent higher than in other industrialized countries.

The pilot is forced to land in Scranton to refuel and wait for a runway to open up at LaGuardia Airport. An e-mail arrives from someone on the staff of the Bloomington newspaper, who apologizes for what she calls “a cross graphic” put at the end of my mother’s obituary (even though the text of the obituary identifies her as a member of the local synagogue.) The mistake somehow convinces me that my mother’s body will never arrive in New Jersey. The coffin at the cemetery will contain someone else or be empty.

While we re-board and then bump down in Queens, I continue to worry. Why should the funeral business be any more reliable than the pharmaceutical and travel and newspaper businesses? The most vulnerable patients have been harmed by drug shortages: children with leukemia and bone cancer. For a number of diseases, some of the drugs in short supply or, worse yet, contaminated, are deemed critical, without viable substitutes. How can we trust entrepreneurs ruled by the profit motive, I fume to myself, and how can we trust airline administrators, newspaper editors, and funeral directors?

Yet here I am, arriving by car at the Paramus cemetery, with the blister packs for this week in my satchel as well as another e-mail assuring me that the obituary will be rerun properly. And amazingly there is the hearse. I ask a deferential stranger in the reception building if I can see the body.

With my brother, we go out to the parking lot and the driver opens the back of the hearse, slides the coffin halfway out, and then lifts a wooden panel on top, carefully pulling back some white covering. It is my mother’s face. My brother and I nod. “Yes,” we breathe out with a sigh of sorrowful recognition. We will be burying not an empty box, not another person, but the husk of a woman who gave us, despite grave odds, the inestimable gifts of life. The funeral people have done well.

I am flooded with relief and belief that the pharmaceutical companies, together with the F.D.A., will also serve us well. They simply must. Turning away from the hearse, I think, the needs are urgent.
Posted By By SUSAN GUBAR,  At 12/10/2012 10:11:28 PM
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