A whole lotta potato latkes, for Chanukah 2001.
"This tongue cancer isn't going to kill her. Her heart will get her first."
These words from my 79-year-old mother's head and neck surgeon, passed on to my oldest sister and me by my middle sister, lifted an enormous black cloud from our world in the summer of 2009.
"Oh, thank God," I breathed into the phone. My sisters and I could deal with this blip on the radar screen, just as we had dealt with the spinal stenosis, the congestive heart failure and the pacemaker. In her 30s, my mother had shed the extra pounds she had carried since childhood, and was vigilant about her diet and exercise routines. At 50, when her first grandchild was born, she quit smoking after 30 years of an on-again, off-again habit.
Mom and Leia.
This disease, however, brought with it a new and particularly cruel impact: difficulty talking, cooking and eating, activities at the core of her being and, really, of our entire extended Jewish family.
Despite having lost my father to Parkinson's 12 years before, my mother led an active social life—she volunteered at the theater and synagogue, played bridge and mah jongg and got together with friends. But mainly she reveled in time spent with us daughters, her sons-in-law, her 10 grandchildren (some with spouses) and her three great-grandchildren.
Our frequent gatherings featured boisterous conversation—punctuated often with laughter (prompted by merciless teasing)—and, more often than not, a meal. Holiday meals always included dishes from everyone's kitchens, and more food than could be consumed by a crowd twice our size. ("If you leave my table hungry," my mother always said, "it's your own fault.")
Preparing a holiday meal was an equal adventure. Every year, to prepare for the Passover seder I hosted for the family, my mother would arrive at my house laden with groceries. We would cook all day: a turkey, potato kugel, matzah stuffing, cucumber salad, stewed fruit and her signature stuffed cabbage.
So it seemed especially harsh that cancer had found a home in her tongue. The ordeal started in 1994, when my mother discovered a "rough spot" on her tongue's underside, which, on removal, proved benign. When "the tongue thing," as my sisters and I called it, returned five years later, she consulted a head and neck surgeon in a major city about an hour away.
My mother adored this doctor, whom my sisters and I called "Dr. Shoes" (because my mother would tell us, "He can put his shoes under my bed any time!"). Dr. Shoes removed what turned out to be well-differentiated squamous cell carcinoma—a fairly innocuous, contained cancer—and then covered the site with a skin graft from her thigh.
For 10 years, she lived a normal life, and even went on some dates. (She was appalled when a gentleman she had been seeing regularly asked her to move in with him. "What kind of example would I be setting for my granddaughters?" she snorted.)
Then, in 2009, another lesion appeared, and my mother underwent a right partial glossectomy. When the pathology indicated Shoes hadn't removed it all, she returned for a second surgery to remove more tissue and to biopsy lymph nodes. One of 15 nodes was positive with spread into the surrounding tissues. The diagnosis was T1 N1 M0 Stage 3 tongue cancer.
We did not know it then, but Shoes' assurance that her heart was more of a concern than this cancer perhaps should not have been so optimistic. According to statistics from the National Cancer Institute, the five-year survival rate for tongue cancer that has spread to regional lymph nodes is 60.9 percent for all races and genders. In retrospect, a 39 percent mortality rate did not, perhaps, merit his prediction.
After recovering from surgery, my mother began eight weeks of five-day-a-week radiation therapy, which left her with an extremely dry mouth (for which she had medication) and an altered sense of taste. For the first time in her life, she took no pleasure in eating, and we worried about her diminishing weight and increasing social withdrawal. For a family in which every event, no matter how large or small, is celebrated with food (hey, we're Jewish), this change was difficult. It left my sisters and me uneasy, worried about what she was and wasn't eating, and struggling to ignore the fears we felt growing in the depths of our being. In retrospect, we probably should have sought help from a speech-language pathologist, not just to help my mother navigate the eating and speech changes—but to help her stay engaged in life, and to help us help her.
Three months after radiation ended, the cancer roared back.
This time the treatment was huge and scary—a disfiguring hemiglossectomy with radial forearm free-tissue transfer. In layman's terms: Shoes would remove half her tongue, and another surgeon would immediately rebuild it with skin and muscle from the inside of her forearm. The process involved two surgical sites, a temporary tracheostomy, temporary tube feeding, face and neck incisions, and eating and swallowing difficulties.
The head and neck cancer treatment center's interdisciplinary team (nurse, dietician, social worker, SLP) swung into action. The SLP explained that my mother would be allowed nothing by mouth until she passed a swallowing test, and that her speech would undoubtedly be affected to an unknown extent. At that time, because I had been working at ASHA for more than four years (I'm an editor, not an SLP or audiologist), and my daughter was completing her master's in speech-language pathology, I felt we had a handle on the speech issues. And we really wouldn't know the extent of my mother's difficulties until after surgery.
On April 27, 2010, when my mother finally arrived in the surgical intensive care after the 10-hour surgery, even my sister the nurse was shaken. Lines of stitches crossed my mother's neck and chin. She was attached to a respirator through a trach. Tubes and wires, IV bags, electrodes and beeping machines were everywhere.
In the two weeks of hospitalization that followed, my mother slowly regained strength; communicated via a white board; had visits from the SLP, nurse and social worker; got used to her g-tube feedings. She was afraid to be alone, especially at night: When she pressed the call button, the nurse would ask over the intercom, "Can I help you?" and, receiving no response, assume it was a false alarm. Our reminders to the staff that she was intubated and couldn't speak went unheeded, even with intervention from the interdisciplinary team.
(A side story: I look exactly like my mother, a fact we acknowledged and celebrated. Several days post-op, after the SLP helped her master the speaking valve and she was finally brave enough to look at herself in a mirror, here's what she struggled to say: "Oh, Carol, I was never a beautiful woman, but now look at me!" To this I responded, "Really, Mom? That's what you say to the daughter who looks just like you?")
After discharge, my mother worked with an SLP on speaking and eating. Housed near my mother in a metropolitan rehab center's small suburban offshoot, the SLP helped my mother with correct tongue placement for articulation, but she couldn't really help with my mother's greatest difficulty: manipulating food in her mouth. She could swallow fine, but chewing and moving the mouthful was challenging, as was controlling excess saliva.
Here's what I learned: It was hard to find an SLP outside of major urban hospitals and rehab facilities with expertise in post-glossectomy treatment. So I can't really say that SLPs were instrumental in helping my mother regain speaking and eating functions, and critically, in helping her ease back into what she loved most: cooking, dining out and family celebrations. Ideally, the SLP would have helped her develop strategies for those food-centered situations, suggested the types of foods that would be least problematic, worked with her on how to minimize the appearance of her eating difficulties. Perhaps the SLP did, and my mother didn't have the strength or desire to work at it. My mother certainly seemed pretty much resigned to "this is just the way it is."
Eating at a restaurant was out of the question, as she felt self-conscious and embarrassed. To be honest, she didn't even really like to eat with us, her family. We insisted it was fine, but for someone who always took pride in her appearance, it was unbearable. She still, however, insisted on cooking for the family. She was delighted when my daughter and two of my nieces descended on her apartment kitchen to learn how to bake her signature mandel bread, a delicious biscotti-like dessert that requires painstaking effort.
The drastic change in my mother's life really hit home as my mother's 80th birthday approached in September 2010 and my sisters and I planned a party. Her limitations were foremost in our minds—no restaurants, no seated meal, nothing that placed her in the center of attention in the course of eating. Instead, we hosted a buffet luncheon for the female friends and relatives at my sister's house. And as she flitted from guest to guest, my mother never ate a thing.
We sensed, without voicing it to one another, that this birthday party might, indeed, be her last, given the enlarged lymph node that had surfaced on her neck. All four of us went to Shoes' office to learn the results of an early October PET scan.
Shoes—whose prediction had given us so much hope—had been wrong.
The cancer had reappeared, not even six months post-op, in the right tongue and tongue base and in both sides of her neck. Another surgery, Shoes said, probably would not result in cure but would probably result in cosmetic disability, dysphagia and a permanent tracheostomy tube. He told us that additional treatment would not change her life expectancy, which he estimated at nine months.
She died five months later.
Two and a half years later, my sisters and I still ache. I wish that the oncologist—however well-meaning—had not been so glib about the severity of her illness, and that comprehensive care teams, like the one that oversaw my mother's care in the major city, were available in other settings.
And even though she lived for less than a year after her extensive surgery, I wish that her health care providers had helped my mother cope with the dramatic change in her life. With her rebuilt tongue, eating became a chore—instead of the joy it had always been—and she resorted to eating alone, on a soft diet with high-calorie liquid supplements, because she just didn't want to have to deal with it. And that, perhaps, was the saddest part of all.