When language and identity intersect
By Staff Writer
Language is constantly changing. While some words fade out of everyday use, others evolve to take on new meaning. In the cancer community, we often hear words like “fighter” or “battle.” While both words have raised some people’s eyebrows, both have also been fully accepted by others. Enter a new word: survivor.
Sylvester follows the National Cancer Institute's definition of the word survivor: “A person is considered to be a survivor from the time of diagnosis until the end of life.”
Just as “fighter” or “battle,” the “survivor” designation has been met with mixed reviews.
Michael Lyons, diagnosed with adrenal cancer in 1997 when he was in his early 20s, is one of those patients who did not identify with the word survivor in the beginning.
“How can you be a survivor if you're given three months to live?” asked Michael, speaking candidly about his prognosis. “Even with the definition that the NCI gives, there’s no way that would have applied to me, and there’s no reasonable person out there believing that three months to live is surviving anything. It’s getting by and wrapping things up.”
It’s not hard to imagine why Michael feels so strongly about being called a survivor when, as he says, he was given “a death sentence.”
“You’re nothing but consumed with the idea that you’ve been diagnosed with something that could kill you, and how you’re going to treat it, how you’re going to get by, how your family is going to get by,” he said. “Planning for the next day, week, or year is very difficult to do when you’re just trying to get through the day-to-day and fight the disease.”
As Michael made it past the initial three-month mark, then six months, then a year, it slowly became clear to him that being a survivor didn’t come immediately with a diagnosis. It wasn’t a fixed point in time, either, but rather a process of discovery.
“It took a long time to figure out what I was trying to get out of all of this,” he said. “You have to figure out where you want the journey to take you. I didn’t just believe in science curing me. I believed in the psychology of the experience. There were things I learned about myself that really guided me beyond diagnosis where I eventually felt like a survivor.”
One of those things, he describes, is living in the moment. As cliché as this expression might sound, for Michael, it genuinely became a part of his identity and allowed him to take back some control over a situation that was more than difficult.
“I learned early on that I couldn’t put the energy into what could happen,” he said. Michael began seeing a psychologist at Sylvester and also receiving acupuncture. Both helped him learn to relax his mind for five minutes at a time so he could stop the “what ifs” preventing him from enjoying his life.
“As silly as it might seem, I would think to myself, ‘I'm not dying in the next five minutes and no one is asking anything of me, so let me just enjoy it.’”
That was certainly the case for Michael, who reached a point where he started planning his first vacation post-diagnosis.
“I shifted from the point of just trying to get through the day-to-day, and thought, ‘You know what? I think I’m going to be there long enough to enjoy the pleasures of life.’ I really feel that at that point I made it to that survivorship definition.”
Though he feels comfortable with the term 20-plus years later, he said he didn’t feel anything close to “survivor” until several years after his diagnosis, and worried that people going through a cancer treatment now may feel more pressure to fit the description.
“The language used today adds significant pressure to those going through diagnoses,” he said. “Once you define something, you are judging yourself against that definition. Survivor and survivorship are a point of time that’s different for everybody, but most patients would agree that it’s not at the time of diagnosis. If you set up the person to believe that there’s a survivor in you right away and you have trouble getting through the diagnoses and treatment, you almost measure yourself against failure.”
As with most things, there are two sides to the coin. Luis Rios, a pancreatic cancer survivor who first was diagnosed in 2017, said that “gratitude and good fortune” came to his mind when he heard the word survivor.
Before his diagnosis, Luis described himself as “the healthiest guy I knew.” He started tasting acidity, so he went to his doctor, who initially thought it may be gastritis. Several days on a bland diet seemed at first to cure Luis’ ailment. But a couple days later, his symptoms returned worse than ever. His doctor ordered ultrasounds and a CT scan, only to discover a mass in his pancreas that had spread to his liver and lungs. Immediately, Luis started on chemotherapy. For the first year, his cancer responded well to his chemo treatment. In his second year, his cancer made a resurgence, and his health began to decline again.
“I went back on chemo and this time it didn’t work as well as it did before,” he said. His team tried two other types of chemo, but his treatments didn’t help.
“Things were getting really bad, and I was in bad shape with severe pain.”
Eventually, Luis’ doctor, Dr. Peter Hosein, an oncologist at Sylvester, recommended immunotherapy. From the very first treatment, Luis remembers his pain going away immediately. That was three years ago and he’s now living pain free.
And while he may not have described himself as a survivor at the time, Luis said the designation wouldn’t cause him to lose any sleep, even in his lowest moments.
“Am I survivor?” he asked. “If that’s how medicine defines it, then fine. When you’re living with cancer, you’re just worried about getting a decent night’s sleep. Not a good night’s sleep—just a decent sleep. You want to be pain free for just an hour. Have a meal and keep it down. Not losing five more pounds this week. You really settle for very little and your focus changes.”
These kinds of definitions are important to the medical community because they help underscore survivorship research and clinical care as part of the cancer experience. Each patient can decide if the word survivor aptly describes their situation, just as that’s been done when saying someone with cancer is a “fighter.” Michael and Luis might not agree on the specific language used to define their experiences, but it’s clear that both put their attention toward making the most of their time.
Bottom line: Language is up for interpretation. What matters most is how you choose to define yourself. Only you can create those boundaries for yourself. You have the power to deem yourself a survivor or not.
“Me?” Luis asked. “I’m the same knucklehead I’ve always been. I should have been dead five years ago and I almost was. I’m the luckiest person I know.”