I read two articles this week that have stuck with me. Both are about cancer, and living with it. One might think that being four years out from the cancer “journey” that I would have “put it behind me,” but as those of us in Cancerland know, that is a misnomer. As the distance between us and cancer becomes greater, the instances of cancer smacking us in the face become fewer, but they are never gone. The opportunities to be bitch-slapped by the beast are plentiful. We reside in the “middle stage” of the cancer “journey,” as author Susan Gubar says.
Gubar is an English professor and ovarian-cancer club member. Her writing cuts to the chase and speaks to the very essence of my soul, a trait I greatly admire (and sometimes covet). To wit:
“But for some of us, there is a middle stage in this journey. Because of advances in cancer research and the efforts of dedicated oncologists, a large population today deals with disease kept in abeyance. The cancer has returned and has been controlled, but it will never go away completely. Like me, these people cope with cancer that is treatable for some unforeseeable amount of time. Chronic cancer means you will die from it — unless you are first hit by the proverbial bus — but not now, not necessarily soon.
The word “chronic” resides between the category of cured and the category of terminal. It refers to disease that is not spreading, malignancy that can be arrested but not eradicated. At times, the term may seem incommensurate with repetitive and arduous regimens aimed at an (eventually) fatal disease. For unlike diabetes or asthma, cancer does not respond predictably to treatment.”
Cancer does not respond predictably to treatment.
True dat. The unpredictability of the beast gives it tentacles with potential to bitch-slap us at any time. Those tentacles may float benignly under the surface, or they may reach out and grab us sight-unseen.
Gubar writes of us Cancerland residents: “No matter how grateful these patients are for their continuing existence, it requires not the spurt of sprinters but the stamina and sometimes the loneliness of long distance runners. When repetitive and arduous regimens weary the spirit, it may be impossible to value the preciousness of life, to visualize one’s harmony with the universe, to attain loving kindness, to stay positive, to greet each day as a prized gift.”
This, my friends, sums up the conundrum those of us in Cancerland face: Yes, I am happy to be alive. But dammit, living under the cloud of unpredictability is hard. It’s stressful. It’s lonely. It’s scary. It’s rife with bitch-slaps.
Article #2 is by Lani Horn, who blogs about her cancer “journey” here. She wrote a piece that was picked up by Time magazine online about the movie The Fault in Our Stars and how it represents cancer patients. Having read the book but not seen the movie yet, I was intrigued by her take on how the movie would portray the reality of cancer patients. Or, as she more deftly puts it,”Is cancer simply a storytelling device — shorthand for eliciting sympathy and turning up the heat on the issues in a character’s life — or do the filmmakers take it seriously as a situation to explore? This question sorts the cancersploitation from real cancer art.”
Horn explains that people who watch movies that deal with cancer are in two distinct categories: “outsiders, wanting to understand an experience beyond our own, or insiders, coming to see our own lives reflected.”
She and I are in the latter group. Unfortunately. Horn makes it very clear that “the world looks different after you have spent time pinned to the mat by death. The gaps between reality and representation are no longer theoretical. They are contentious.”
Oh, but to reside in the land of theoretical gaps between reality and representation. To never worry about being bitch-slapped by a tentacle.
Horn asks: “So what does it mean to use cancer as a backdrop to a story? To be sure, a prolonged or terminal cancer experience is a crucible of one’s character, as well as the characters of those around you. The fractures in our relationships break or heal under the strain of mortal threat. Cancer is an economical dramatic device.”
Yes, cancer certainly is dramatic. And unpredictable. And bitch-slappy.
Yesterday I turned 45. I’m on the far side of middle-aged and am four years into life after cancer. Whatever that means. I suppose I don’t have any idea what life after cancer means, other than the fact that nothing is ever the same afterward. In honor of growing another year older, I decided to read a “young adult” book, to see if I still knew what is young, hip, and/or cool. I had read several glowing reviews of The Fault in Our Stars by John Green. Despite those glowing reviews, I initially resisted reading this book, because I didn’t want to read a book about teenagers with cancer.
But that’s the thing about The Fault in Our Stars. It’s not about kids with cancer. The main characters, Hazel and Gus, have cancer, but the book is about so much more than their respective diseases.
I wondered how Green could write so convincingly and wrenchingly about the role that cancer does play in the book, if he had not been touched by disease himself. So I read an interview with him and learned that he worked as a chaplain in a children’s hospital and met lots of sick kids. In that interview he said, “When I was at the hospital, I met all of these young people who, yes, they were sick, but they were also many other things. They were funny and angry and sad, and they had all of the emotions that any other human has, all the desire, all the wishes. And that was what really resonated with me.”
That resonates with me, too, because it’s true. People who have had or currently do have cancer certainly have the same emotions, desires, and wishes as any other human. However, those emotions are often sent into overdrive, as we must confront things we aren’t prepared for or would rather not face.
Those desires are often perilous because of the uncertainty of our fate. As Gus so eloquently expresses it, “Almost everyone is obsessed with leaving a mark upon the world. Bequeathing a legacy. Outlasting death. We all want to be remembered. That’s what bothers me most, is being another unremembered casualty in the ancient and inglorious war against disease.”
Those wishes play a big part in the book, as the characters are forced to learn a hard truth at a very early age: That life is not fair. Or, as Gus puts it, “The world is not a wish-granting factory.” In the interview I read, Green spoke to the idea of the world not being a wish-granting factory:
“I think cancer in many ways to those of us alive today is similar to what tuberculosis was like in the 19th century. It’s so unfair: It takes the young, it takes the old. Sometimes you live, sometimes you die. And it’s very difficult to make sense of the reasons why it may go one way or another. It’s very, very difficult to imagine it as anything other than just cruel and cold and capricious. And that makes it difficult to imagine the universe as anything other than cold and capricious. And I wanted to be honest about that, because I wanted them to have to face, in the most desperate way, that overwhelming question, as T.S. Eliot called it, of how we’re going to organize our lives and what they’re going to mean.”
Hazel and Gus confront the capriciousness of whichGreen speaks. Gus talks about receiving an 85 percent chance of surviving his cancer: “I know those are great odds, but I kept thinking it was a game of Russian roulette. I was going to have to go through hell for six months or a year and then at the end, it still might not work.” Hazel points out that being her situation was completely different: as a Stage IV cancer patient, her “final chapter was written upon diagnosis. Gus, like most cancer survivors, lived with uncertainty.” I had never before considered that a Stage IV patient might view herself as having a more certain future.
Hazel describes a scene that was very familiar to me during the multiple hospitalizations I had from the post-mastectomy infection: “The first thing they do is ask you to rate your pain on a scale of one to ten. I’ve been asked this question hundreds of times over the years and remember once early on when I couldn’t get my breath and it felt like my chest was on fire, flames licking the inside of my ribs fighting for a way to burn out of my body. A nurse asked me about the pain and I couldn’t even speak so I held up nine fingers. Later, after they’d given me something [for the pain], the nurse said, ‘You know how I know you’re a fighter? You called a ten a nine.’ But that wasn’t quite right. I called it a nine because I was saving my ten.”
Saving my ten.
Another quote that really resonated with me is this:
“Pain is like fabric; the thicker it is, the more it’s worth.”
While that is true, it’s also true that the more it’s worth, the more it costs. That’s why I’m saving my ten.