I first encountered Laura Morefield online through a comment she had left on another blog. On it Laura spoke of something she calls “cancer face”. I was so taken with her comment, and intrigued by what she had to say, that I contacted her and asked her to expand on the theme for us here and I am happy to say she accepted.
Here then, is Laura’s story of being a cancer patient, facing up to death, societal expectations and of course, “cancer face”.
On November 18, 2008, I played a round of golf at an executive course with my dad, one of my brothers and a family friend. I beat two of the three (protected here by anonymity) and did a little dance, singing, “You got beat by a gi-irl.” As I played the round, I complained (as I had been doing for about six weeks) about a stitch in my side.
After driving home from San Diego to Orange County, I was running a significant fever. My husband got home, force fed me two Tylenol (which I’ve eschewed for years in an effort to protect my liver). I woke in the early hours of the 19th, in severe abdominal pain. We went to the hospital, hoping it was either a pulled muscle or perhaps appendicitis.
On November 20th, after two days of tests, a good doctor with an interesting bedside manner gave me the news. “The biopsy shows you have adenocarcinoma. It is consistent with colon cancer, which indicates that it’s spread to your liver. An oncologist will be by to talk to you. Hang tough.” He gave us two thumbs up and left the room.
Dan and I dissolved into shock, grief and panic before recovering our customary stoicism and calling friends and family to give them the news. I was too much in shock to notice much more that day, so I missed the first signs of what I’ve come to call “cancer face.”
When I rose from bed on my first morning home, due to the clatter of cleaning arising from various friends and relatives who’d gathered and were looking for something to occupy their time, I shrugged on a robe and went down for breakfast. Three of the group were sitting at the table, facing our back patio. I crossed in front of them and watched their heads turn in unison, their eyes widen and begin to tear in some cases.
I waved and said, “I’m still here.”
That was my first experience of cancer face. It’s an expression that comes naturally to those who hear that a friend or family member has been diagnosed with cancer. I know that it comes naturally because it’s a face I’ve worn. In my “Chemo Week Manifesto,” designed to help family and friends know what I wanted in terms of care, I helped them understand chemo face with this set of instructions.
“Get up, go to a mirror, say, “Oh, no. You have cancer!” Do not make this face in my presence.”
In the ensuing months, I’ve come to understand where chemo face originates. In my experience, the odd combination of pity and anticipatory grief comes from our cultural assumptions that the person with cancer is suffering and is in his or her last phase of life. In my parents’ generation, it was almost always the case that a person who was diagnosed with cancer was automatically going to die of that cancer.
Worse yet, if someone chose to fight cancer, he or she would suffer through nausea, vomiting, pain, surgery, more pain, more vomiting, wasting and, eventually…inevitably, still die. That’s the reason my grandfather refused chemotherapy in the early 60’s. It is how we witnessed my two aunts’ deaths…one relatively quick, one through a recurrence of breast cancer.
It’s also why, at my initial diagnosis, I said to the oncologist that I wasn’t interested in “trading six weeks of hell for six more weeks of life.” He looked at me, rather bewildered, and gave me my first glimmer of hope as a Stage IV colon cancer patient. He said, “It’s not like that anymore.”
As Dr. Carabuela accurately stated, our cultural paradigms about cancer are radically behind the times. Cancer patients (notice, I don’t refer to myself or others as cancer “victims”) are living longer, living more healthfully and well, and in many cases are actually beating the odds and surviving with or without evidence of disease.
Yet it remains a difficult battle for those of us with cancer to educate those without about the disease about what our lives are really like. Sure, I go to chemo every 14 days. Sure, I have a few days of low energy and other assorted side effects. But I am not even remotely going through hell. And while there are many cancer patients who have more severe side effects than I, or whose disease has progressed while mine has gone into remission, the truth is none of us are served by cancer face.
Cancer face assumes we will die while we hope we will live. Cancer face assumes we are sick and invalid when we are capable of many things—worse, it convinces us we ARE sick and invalid. Cultural assumptions lead family doctors and internists to issue dire predictions about “how much time” we have left. In my case, I was told 12 – 18 months, that there was no hope of remission, that my husband and I should “do something you’ve always wanted to do,” that surgery would never be an option for me (it is now) and that my cancer is a terminal disease.
In response, I’ve observed that life is a terminal condition. We all are going to die someday. I may die of cancer or I may die in a car accident tomorrow or of falling from a high hill on a hike I embark on 20 years from now. I have as much time left as I have. No one can predict that for me based on median survival rates they learned in medical school. As one friend’s oncologist put it (God bless her), “You are not a statistic.”
I still get cancer face now and again. Usually it’s from someone I’ve just met or who hasn’t seen me since the diagnosis. I understand my journey with cancer well enough not to be undermined by a reminder about other people’s assumptions about my future. And I talk openly about cancer face and the outdated cultural beliefs that inform the expression so that my brothers and sisters who are just finding their feet after their own diagnoses can do so without carrying the burden of false assumptions.
what a great piece – really enjoyed reading it.
Like Laura Morefield, and her words and perspective…=)!!