I have lung cancer. Stage IV, non-small cell lung cancer, also known as NSCLC. When I was diagnosed in November of 2012, the first oncologist I met with told me that I had six to eighteen months to live. The PET scan on the computer screen in his office indicated the spots where the cancer had melded into my bones. The tumors in my lungs weren’t so obvious – they occupied a murky haze left over from the pleural and pericardial effusion I’d suffered the previous month.
But the biopsy results clearly revealed lung cancer.
Before I go any further, I need to warn you that today’s edition is not a story of my fight or battle for survival.
Rather, it’s an admission: for five years, I’ve been alive, waiting for the other shoe to drop.
Worse yet: sometimes I wish I could hand those five years off to someone else and get on with the business of dying.
Do I jinx myself by putting that thought into print?
“Jinx” is not a typical word in my vocabulary, though it does bring to mind distinct memories of my children watching Scooby Doo, a cartoon I’d viewed as a child. “Jinkies,” Velma says.
“Waiting for the other shoe to drop” is an idiom, it turns out, related to living in New York City. Sources suggest that the expression dates back to the end of the nineteenth century and early twentieth century. As manufacturing grew, inexpensive housing for workers did as well. Apartment dwellers could hear the movements of their neighbors above and below them. A thud recognizable as a removed shoe generally would be followed by another thud coming from the other shoe.
Some definitions for the idiom refer to the idea of inevitability related to the dropping of the second shoe. Others imply a sort of dread related to the dropping as the definition has morphed from conveying the inevitable to the inexorable. I can’t help but think of Thomas Hardy novels I read in my college days, when I first learned about Hardy’s brand of stoicism and fatalism.
Currently, no known cure exists for stage IV lung cancer, although some people do somehow become cured, which accounts for the small percentage of survivors listed on websites. Oncologists and researchers measure “progression-free survival,” and I want to emphasis that I find it entirely admirable that oncologists’ lives are devoted to seeking the longest “progression-free survival” they can conjure for their patients, despite my frustration with the term.
I learned shortly after I was diagnosed that my cancer had a specific mutation – the epidermal growth factor receptor (EGFR) mutation for which a drug was developed in the early decade of the new millennium. A pill. The pill has different versions, or iterations, if you want to use technological terminology. My version is erlotinib, known in the commercial world of specialty pharmacies as Tarceva.
I take a 100-milligram tablet of Tarceva each morning and have done so for over five years now.
The drug does not provide a cure. Instead, it must be taken daily to keep the cancer “controlled.” Not “in remission.” The term “in remission” suggests that cancer is gone. Cancer controlled by Tarceva isn’t gone; it is in what I call “solitary confinement.” Wherever it is lurking in the body in addition to the lungs for the lung cancer patient with metastases – the bones, the liver, the brain – it will remain. But it can be radically reduced and actually appear to disappear.
Like magic, almost.
Except at some point the drug will stop working. No one can predict when that will happen. Fifteen percent of individuals who have the EGFR mutation and take Tarceva will live five years or longer. It is not completely clear what “or longer” means.
And then there is the other eighty-five percent.
In the beginning, the concept was a little challenging for me to explain to people with whom I shared my personal health information. These days, I don’t need to explain much at all. I can point to recent television commercials. Opdivo was the first drug that caught my eye on the commercials. A cityscape with first the sidewalks and then a tall building emblazoned with the phrase, “A CHANCE TO LIVE LONGER,” while pedestrian onlookers stare in wonder. Then the commercials for Keytruda showed up. A woman preparing for what looks like a family portrait or a photo shoot of some kind. In another rendition a woman getting up and going about her day, talking about her longer life and the new normal.
In the privacy of my family room, I make fun of these commercials, but please understand that I do not intend to make fun of cancer patients themselves or their situations. I’m making fun of the Madison Avenue version of what it means to “live longer.” The implication of the happy moments you’ll have. All the energy you’ll possess to keep going in your regular life while you deal with your cancer. Light-filled shots of the clean, clutter-free home you’ll be living in.
I’ve watched the commercials proliferate in the last year or so, watched them from my family room, where the floor is covered with my dog Clover’s fine white hairs, in spite of my husband’s efforts to keep them vacuumed up. The couch and the chair, purchased at Art Van when we first moved into this house in 2002, are both threadbare, the perfect mixture of nubby and pilled to pick up dog hair, especially when one member of the two-member household allows the dog to climb onto the furniture in this room and the other does not.
The paneled walls need a serious dusting and cleaning. The window looking out into the back yard needs some curtains. (Disclaimer: the lack of curtains existed before the cancer.) Underneath the window, the paneling is stained with water damage when the eavestroughs dumped their overflow in recent years and it poured back into the ailing window. I have been out of work since 2015, a year after I was diagnosed with the disease, and have been unable to contribute much to the family budget.
It is hard to keep the room or the house clean. Some days I have no energy, and until I shipped my youngest child off to college in the fall, I expended whatever energy and money I had on him and his older siblings, who are making their way in the world in large cities where they might occasionally hear one or more shoes drop.
I cannot express how happy I am that I have “lived longer.” I have, in fact, had more Madison Avenue airbrushed moments with my family members than I ever could have imagined possible back in those dim days of December 2012. I have immense gratitude for each of these moments: the graduations, the performances, the sessions playing “Cards Against Humanity,” and the family jokes about how I see striking similarities between my youngest son’s face and that of Barack Obama, my most favored president of my lifetime, because if I wanted to have anyone’s love child outside of marriage it would be his.
Shared understanding of our dog, Clover, and her submissive peeing practices. The timbres of my children’s voices calling through the house, those timbres maturing over time, my constant “Pardon?” an annoying refrain because I need a hearing aid and it seems imprudent to spend money on one when it could go to waste sooner than I think it might.
That’s where the other shoe thing comes in again. Once you have been diagnosed with cancer that doesn’t have a cure, you are always waiting. “Live your life!” my oncologist told me a few years back, when I’d made it through the first few years, defying the initial Tarceva statistics. It is sound advice, it really is, but you can’t always erase those thoughts about your future and its truncation. And if your family budget created at another time in your life assumed that you’d be bringing money in the door for your children’s college education, you can’t easily forgive yourself for not bringing that money in.
But if you have lived longer than most people in your situation – on your drug – have lived instead of died, you feel guilty for even uttering a complaint. You have been given the gift of life. So many others have died, so soon, so young, so tragically, from this horrible disease.
A tension arises then, between this waiting for the other shoe to drop and this guilt. Your driveway is crumbling and it will cost $8000 to fix.
But you’re alive! Those other people didn’t make it.
Your basement is water damaged, a hole suddenly appearing in the foundation, letting in a pile of sand and dirt, which your husband had to vacuum, mop, dig up.
But you’re alive!
Your face is covered with the infamous Tarceva rash, and now, after five years, the “eyebrow thing,” another Tarceva side effect, drives you insane every day. Ingrown hairs. Pustules. Neutrophils. Sometimes your eyebrows just ache with the breakouts and the skin healing and shedding.
But you’re alive! You should be thankful. You are one of the lucky ones!
(And don’t ever forget it!)
A sinister voice makes this last statement. You try not to read into it. But you do. And you’re overwhelmed with guilt. You feel guilty for the dead who didn’t have your opportunity.
You need to maintain each day two separate “to do” lists – one for living and one for dying.
And some small part of you is even a little bit angry that you are no longer part of the cohort of people who get to talk about their retirement plans and their children’s weddings and their grandchildren, yet you feel you must keep your complaints to a bare minimum because you are one of the lucky ones.
You hate yourself – no, I’ll take ownership: I hate myself for each day I’m not happy to be alive.
And I hate myself for the weight I hang around the necks of others.
I long to be able to just appreciate every moment I’m given, without guilt, without regret, without resentment.
When my husband Tim and I were first married and living in Charlottesville, Virginia, he took a job as a sheet metal worker for a company working on an expansion of the University of Virginia hospital. He’d taken a break from a PhD program in American history to figure out what he really wanted from an advanced academic degree. Each day he came home from a long day of hot, dusty work, telling stories of the men with whom he spent his time. Since he’d worked at his father’s roofing company through college and afterward, he was no stranger to physical labor.
He was assigned to assist an older union worker named Bob. The two of them labored side by side on projects, ate lunch, and took breaks together. Bob finally admitted that he was working in his advanced years to pay off the medical bills his wife had incurred before she’d died a few years earlier of cancer.
In the past five years, I’ve thought quite a bit about the man who toiled under the hot Virginia sun to pay off old bills. My husband’s employer provides excellent health insurance, for which I am thankful. But we have other bills. When I recently established a new repayment plan for the student loans we’d undertaken for our older two children, I realized that my husband might be paying off that debt himself until 2041. I thought of Bob again, wondering how he distracted himself from the seeming futility of earning into the past instead of the future. I wondered if he ever wished his wife had died earlier.
When I think of those days – the hope and promise that colored our new marriage and the future, however much in turmoil we may have been about our careers at the time – I have an ache for an old life in which shoes came in pairs, always together, and I wasn’t waiting and measuring the sin of my lack of appreciation.
I force myself to remember, too, the empathy we felt for him – Bob with his work ethic, his unpaid bills, his loneliness. And I try to hollow out within myself a place where that empathy can take hold, so that I can give a little to my own soul as I offer it to others, so many of us waiting for and dreading that soft thud.