When Robert Lipsyte was diagnosed with testicular cancer in 1978, his wife Margie ordered a La-Z-Boy recliner. But Lipsyte, a newspaper columnist and author, didn’t make room in his living room or his life for the chair. Margie eventually canceled the shipment.
Instead, Lipsyte spent that summer in a number of distressing consultations with too many doctors and helping out on the political campaign of a friend in the South Bronx. He took twice-daily sitz baths, writing press releases for the candidate. He took his daughter’s cat to the veterinarian and attended his son’s Little League games.
By September of that year, Lipsyte had undergone surgery to remove the cancerous testicle. Since the cancer had spread, the next step was chemotherapy. That treatment lasted nearly two years, and he was determined to maintain a normal life routine, which included sportswriting assignments at the time.
“I would vomit and play with the kids,” he said on a recent visit to Chicago. “Then I would vomit again and go cover a game. Chemo was part of life. When I finally stopped going for treatments, there was a hole in my routine. I felt in some ways like I lost a hobby.”
Despite his determination to act and feel normal, Lipsyte knew he was nonetheless beyond the borders of everyday life, in a “strange and scary” place he calls Malady. His newest book, “In the Country of Illness: Comfort and Advice for the Journey” (Knopf), is a travel guide for the sick and their loved ones.
Lipsyte said regaining a sense of certainty is a key issue. However, he recognizes that this can be a futile task for patients who are still searching for a correct diagnosis, let alone the proper treatment or a cure. He suggests a dose of the mundane.
“There’s nothing wrong with worrying about termites or taking out the garbage,” he said. “The minutiae is ultimately what we can control.”
To his credit, Lipsyte’s book offers much more than that for patients as well as family members and friends who can make sure the doctor shows up, change a bed pan or hold a hand at just the right time.
He is direct when advising readers about getting the best care: “Margie asked, `How many of these (surgeries) do you do a year?’ It was her first cancer question, the first of thousands, and it still stands as one of the best. When it comes to any kind of important decision or procedure, it is essential that the doctor be experienced. Never, ever, hesitate to ask about experience and credentials.”
The point is simple but powerful. Doctors can be intimidating, but there should be no question they can’t address. Answers can tell you plenty about the physician or surgeon, and might even lead you in a different direction. In Lipsyte’s case, a suburban-based urologist admitted to seeing only two or three testicular cancer cases each year. That was enough for Lipsyte (who currently writes sports and metropolitan for the New York Times), to move his pursuit of healing, and his scheduled surgery, to the famed Memorial Sloan-Kettering Cancer Center in Manhattan.
While convalescing at Sloan-Kettering, Lipsyte participated in an informal support group with two younger roommates (Lipsyte was 40; they were in their 20s, a more typical age for such a diagnosis). They met each day after breakfast to compare notes and symptoms and hospital gossip. Lipsyte writes, “We gave each other a lot of the slack and unself-conscious tenderness I had seen in the Army.”
Likely, the writer in Lipsyte also sketched out two more characters who inhabit the country of illness. Even as his latest work, “Free to Be Muhammad Ali,” had just been published, a new book idea was forming. The Ali book — a memoir of the days when Lipsyte covered boxing, which started when a young Cassius Clay knocked out Sonny Liston in 1964 for the world heavyweight title — came out the week of surgery.
“I kept it hidden in my drawer,” he said. “I didn’t want that part of my life on display here. I didn’t want to answer questions. `How could this happen to you? You’ve published books!’ “
In his new book Lipsyte focused on his experiences, which included a return of testicular cancer (the other testicle was removed in 1991) and the death of his then ex-wife Margie three years later (she was first diagnosed with breast cancer in 1981). The Lipsytes were divorced in 1990, but that doesn’t diminish the compassion and loving care threaded through the second half of the book, titled “Sophisticated Travelers.”
“Illness can place incredible stress on a marriage,” said Lipsyte. “For us, it might have represented the strongest part of our marriage. The illnesses kept us together. We crossed the border together.
“When Margie’s cancer came back hard, I was the first or second person she called. She knew I understood. It was like we would call a truce during an illness.”
Companionship can be elusive for some individuals battling sickness, but a good friend or even a paid assistant can qualify. Lipsyte recommends not facing illness alone. He said too many patients use up energy “dancing” for loved ones and well-wishers, maybe putting on a happy face. The companion can double as a bouncer, he said, for visitors who overstay their welcome or invade a patient’s privacy.
Lipsyte is upfront that cancer tends to be one of the “glamor diseases,” making it easier for a patient to be allowed a state of grace. He said less visible diseases — “Crohn’s, diabetes, osteoporosis, lupus, multiple sclerosis” — don’t carry the same easy entry into the country of illness. It can be a harder journey without as much understanding from others.
