There was no stopping the tears.
Five and a half months after being diagnosed with pancreatic cancer, six weeks after the last of seven chemotherapy infusions and four days after major surgery, the doctor was ready to discharge me from the hospital.
All I needed to do was deliver a bowel movement to prove my digestive system was working. That evening, I was alone in my hospital room with an Iranian-born nurse who at 37 was my son’s age. We had gotten friendly — a Muslim and a Jew, swapping stories about our childhoods, careers and children.
While he was updating my records at the computer, I began sobbing. After months of stoicism, this, finally, was my time for an emotional catharsis. The nurse came immediately to my bedside. He would be there for me again a short time later — with a suppository — for an equally important catharsis of my bowels.
I’m not wired to cry, and it’s not just because I’m a man. It’s a legacy from my parents, who always conjured up fortitude to combat their challenges. My mother had no choice. Her father, a Russian immigrant, abandoned the family a few years before the Great Depression. Her mother later lost her sight due to glaucoma and then her hearing as well. After such a traumatic childhood, my mother did not rely on anyone for anything.
My soft-spoken father was tough in his own way. A man with unlimited tolerance for hard work, he never complained. He preached that the strong should take care of the weak and, despite his modest income, embraced his responsibility.
Drawing on my lineage as I faced cancer, I didn’t think I was one of those weaklings who would need help. I presumed my superpowers would vanquish the side effects of chemotherapy that debilitate everyone else. I was so wrong. The presurgery chemotherapy assaulted me with nonstop nausea, diarrhea, fatigue from dehydration, hair loss, incessant hiccups, blood-tinged snot and painful tingling when I touched anything cold.
The full meaning of being a patient — vulnerable and dependent — would eventually become clear: I would be the beneficiary not only of my caregivers’ skills but also their resolute loyalty. I would discover a sacred relationship — but like many men, I would learn it one lesson at a time.
I had resisted the role of patient in part because my early diagnosis was encouraging. When my primary care physician called me with the results of the CT scan that first revealed the pancreatic tumor, he began the conversation with “This is great news!”
Relatively speaking, he was right. The stage I tumor was not touching nearby blood vessels, and there was no evidence of metastasis. I was apprehensive but never anxious about my treatment.
My wife of 40 years, Ellen, was not so calm. She imagined me coming home from the hospital zombie-like, with tubes oozing slime as red as fruit punch. She arrived at her catastrophic vision after consulting Dr. Google about pancreatic cancer’s high mortality rate (true) and the surgery that would gut me like a fish (hyperbole). She was certain I would need extensive care from her and an army of friends, neighbors, cooks, visiting nurses and physical therapists.
courtesy Andy Segal
Segal married Ellen Mazer in 1982. His cancer diagnosis four decades later strained their relationship, generating enough friction that they tried couples therapy.
But I was adamant that I didn’t want anything to do with any of them. I planned to handle meals, exercise and what the professionals call “activities of daily living” on my own.
A friend of mine, psychologist Avrum Weiss, said my brain was doing what it was socialized to do: process thoughts and emotions according to traditional roles. “Men think of masculinity as a standard, something they have to earn. Something they have to prove.” said Weiss, author of “Hidden in Plain Sight: How Men’s Fears of Women Shape Their Intimate Relationships.”
Ellen and I even argued about where she’d wait during my surgery. Why would it make sense for her to schlep to the hospital at 5:15 a.m. to wait uncomfortably for several hours until the surgery was over? Better for her to come later, fully rested, I reasoned, when I would be leaving the recovery room. What seemed logical to me was deeply hurtful to Ellen. (The surgeon settled that one. He said Ellen should be there.)
Our competing forecasts led to a cold war. Underlying the iron curtain of scowls and sulking was the issue of control, or, more accurately, the lack of it. For Ellen, there was a double whammy: The cancer was out of her control and so was her ability to influence how I dealt with it.
The conflicts generated enough friction that we tried couples counseling. It did not go well. After four sessions, the psychologist fired us, saying he didn’t want to waste our time and money listening to us bicker.
I was as protective of my privacy as I was of my independence. Always the class clown, I relish attention when I’m holding court. But starring in my own medical soap opera? No, thanks. I did not want to be seen as damaged goods. We told only our inner circle. But the support we received made me realize my people were helping me, and not telling friends felt as dishonest as lying. So, we told more people.
Occasionally, the openness backfired. A few blurted out, “Oh, my relative died of pancreatic cancer!” Typically, though, the emails and phone calls were buoyant. A high school classmate bridged a 54-year silence to cheer me on. My posse was forming, whether I wanted it or not.
Friends who had battled cancer offered advice, grocery shopping, respite care and rides to doctor appointments. Some were people I had neglected to call when they were sick. At the time, I thought I was too far removed from their lives and didn’t want to intrude. I regret my immaturity, and it won’t happen again.
After chemo came the surgery, performed by a doctor who exudes the confidence of an NFL quarterback and just enough warmth to be accessible. By his count, he has done several hundred pancreaticoduodenectomies, known as the Whipple procedure — after Dr. Allen Oldfather Whipple, who developed the protocol in the mid-1930s. In addition to resecting the tumor, the Whipple procedure also removes parts of the stomach and intestine as well as the entire gallbladder. This requires new surgical connections between the organs, which makes the operation complex.
After surgery, in my hospital room, the physical intimacy with the hospital staff was immediate, what with the fickle hospital gown, the urinary catheter and two surgical drains in my abdomen.
courtesy Andy Segal
Presurgery chemotherapy left Segal with nausea, diarrhea, hair loss and other side effects. He expects to undergo five more chemotherapy sessions after surgery.
Everyone I encountered — not only the doctors and nurses, but also physician assistants, physical therapists, housekeepers and food servers — was committed to my well-being. Friends fortified my spirit. And Ellen was overseeing it all. No argument from me, not anymore. Together, they created a healing environment I thought I didn’t need.
My surgeon soon dropped the formality of calling me “Mr. Segal,” in favor of the shorter, friendlier “Segal.” As in, “Segal, I hear you want to get out of the hospital.” During his rounds the evening before my discharge, I took my new informal moniker as a cue to promote male bonding with a vulgar joke about a genie in a magic lantern. After a hearty laugh, he began calling some people “a–holes” and even dropped the f-bomb.
Ellen’s brother, a retired critical care doctor, had offered to come to Atlanta from Annapolis, Maryland, when I was discharged. While I thought it was overkill, she welcomed his moral support and the extra set of hands in case something terrible happened at home.
courtesy Andy Segal
Segal says that he and his wife, Ellen, have now discovered places where they connect as caregiver and patient.
As the three of us drove from the hospital, he regaled us with fantasies of taking revenge on his “enemies,” including retribution on their body parts that distinguish men from women. It was hilarious. And magic happened. Over the next few days, he became more friend than family.
Longtime friends gave new meaning to “comfort food” with meals for Ellen and meals that complied with my restricted diet. There were also phone calls, texts and corny get-well cards. A friend’s husband became my walking companion. I had never realized how many people had my back (and Ellen’s).
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My prognosis is reasonably good. The pathologist’s report says the excised tumor has clean margins, which means the surgeon got it all. There was no cancer in the 34 lymph nodes that were removed, which means there is little chance it spread.
Even so, in case there are undetectable stray cancer cells, I will undergo five more chemotherapy sessions. At this point, I welcome all the help I can get to endure those 10 grueling weeks.
Fortunately, Ellen and I are better prepared now. We have discovered places where we connect as caregiver and patient. One example: When I first walked after surgery, I unconsciously and unnecessarily hunched over to protect myself from what I feared would be abdominal pain.
To improve my posture, Ellen deployed a catchphrase from the hit TV series “The Marvelous Mrs. Maisel” that she will invoke again during the punishing final phase of my chemo treatment: “Tits up!” Instead of the bossy-sounding “Stand up straight,” it helps my posture — and my overall attitude. At this point, I sincerely appreciate it.
As a senior producer in CNN’s documentary unit, Andy Segal won Emmy, Peabody and DuPont awards. He is currently an independent writer, producer and director in Atlanta.