Just Breathe: What It's Like to Have Lung Cancer
Having Lung Cancer
So many of my days have been blessed with good fortune that I couldn't begin to count them. But life always has a way of balancing things out, doesn't it? I figured my luck was due to change, and two years ago it did, with a vengeance, when I learned that I had stage IV lung cancer.
Up until then, though, I'd been rich in luck, starting with my storybook childhood in Shelby, North Carolina. Everything came pretty easily for me: In school I was a tennis standout, a springboard diver, and a state swim champion. In college at the University of North Carolina I took my junior year off to work in a ski shop in Vail and wound up keeping the books for my boss, too. I discovered I loved numbers and I went back to Chapel Hill to declare accounting as my major, happily exchanging the peaks and valleys of black diamond runs for those of debit, credit, and cash-flow graphs.
In 1986, while I was in Vail, something much more significant happened. I met Jim, the love of my life. From that day through this one, my storybook life has had a coauthor. We learned to hold hands even when you don't want to, to hold your tongue even when you're right, and to hold fast even when it's not deserved. We built a relationship, a marriage, and a family: Our daughters Elise, Laney, and Hannah are 18, 17, and 12 now.
We've always made choices based on being happy rather than rich. A few years ago we gave up stable careers in landlocked Columbus, Georgia, said good-bye to the rat race, and moved to a home on Sanibel Island, in Florida. We had no jobs and no plan; we just knew it would work. And it did. Now Jim's an independent accounting rep for an international company, so when he's not traveling we ride our bikes to the coffeehouse and the beach. We walk to the lighthouse and pick up shells. I mean, who gets to do that?
Except now my lung cancer is slowing me down, and that means so many of my days make me feel furious and frustrated. For starters, it took too long to get a correct diagnosis. My symptoms started in December 2009, when I was 44 years old, with a cough I thought was a chest cold. In January, still coughing, I went to my family doc. On the first visit, he agreed it was a chest cold. On the second, he said it was bronchitis. On the third, he said it could be walking pneumonia -- which prompted me to demand a chest X-ray. It was inconclusive. So I had a CT scan. In April 2010 a lung specialist finally gave me my official diagnosis of stage IV lung cancer. Five months had passed. Five long months -- an eternity that could have been spent in treatment.
Why does it take, on average, 138 days for someone with lung cancer to go from first symptom to first treatment? Why does one estimate show almost 40 percent of doctors don't initially connect lung cancer to its symptoms? And why hadn't I ever learned -- just like too many other Americans -- that a new cough lasting three weeks or longer is lung cancer's signature symptom?
This lack of awareness really matters. Lung cancer kills more women than breast, ovarian, and uterine cancers combined yet it receives the fewest research dollars of any cancer. Each breast cancer death correlates with $19,419 in federal research funding. For lung cancer, that plummets to $1,888. This gap has real consequences: Since the early 1970s, breast cancer's five-year survival rate climbed from 75 to 90 percent, while lung cancer's barely budged from 12 percent to 16 percent. I'm certainly not begrudging my sisters in pink. In fact, I look to them as the model of success for raising awareness. We need to replicate that for lung cancer.
I drove myself nuts trying to understand what had caused my cancer. Was it power lines? Fertilizer? Dehydration? Sugar? Chlorine? Impure thoughts? Was it, in fact, nuts? The real ones, I mean -- I ate a lot of peanut butter. Did I have a low-level cancer-causing peanut allergy? Or was it the long, hot showers I so loved? Finally, I realized I would never know, just as I've never known the why behind my good luck. I had to accept that, sometimes, cells turn cancerous without the courtesy of an explanation.
So instead of stressing about the cause, I focused on becoming my strongest advocate. I can't tell you how upset I get at people who think -- because of its connection to smoking -- that people with lung cancer had it coming. I've seen this up close. Many people, even hospital staffers, treat me far more compassionately after learning I never smoked. That's unfair. Everybody did stupid things as kids. You did, I did, we all did. For some, their stupid thing was getting hooked on cigarettes. No one deserves to endure this horrible disease while being judged about how they got it.
Lung cancer affects plenty of people who have never smoked and women are especially at risk. In fact, 20 percent of women with lung cancer never smoked, and experts say those numbers are climbing. Can you tell me why? I sure can't, because the available funding goes mostly to smoking-cessation programs, not to research. Of course, stopping people from smoking is crucial, but so is moving the needle toward a cure.
Still, believe it or not, there are so many days when having lung cancer makes me laugh. Crazy, right? But laughter has never been optional for me; why would a disease change that? The other night I really needed some me time but there were twice as many dirty dishes in the kitchen as clean ones. So I made a big show of slouching toward the pile, moaning and groaning. "Oh dear," I said to Jim and the girls, wiping my brow for dramatic effect. "You know I have cancer, right?"
We laughed and laughed. And then Elise, Laney, and Hannah did the dishes. Bonus? I don't play the cancer card very often, but sometimes it feels good to pull the bogeyman out from under the bed and mock him.
And there are so many days -- all of my days, actually -- when having lung cancer makes me want to breathe. That sounds so simplistic, but hear me out. At first my five-year survival rate was around 5 percent, according to the statistics, maybe higher because I was younger and a nonsmoker. Now, because of my cancer's aggressiveness, that chance is more like 1 percent. But somebody has to make up that 1 percent, you know? Why can't it include me?
After surgery to remove a lobe in one lung, three rounds of chemo, and almost two years on the lung-cancer drug Tarceva, my tumors have returned and spread. An experimental drug called MM-121 is the only thing keeping those tumors stable, perhaps buying me enough time for the next, better, drug or treatment to come along.
I also need to breathe to tell my daughters not to worry about the worst unless and until that time comes. And if it does, I want them to continue living with the strength and grace I see in them every day. Most of all, I need to breathe in order to read out loud the most important words in our storybook: I love you, Jimmy. I love you, Elise. I love you, Laney. I love you, Hannah. And I will tell you that for as long as I have breath on earth.
Wesley Fay considers each lungful of air an act of defiance against the toll her disease has taken. Her bike rides are shorter, she has had to switch to yoga from tennis, and she can't swim as much anymore. But instead of lamenting those losses, she just calls the slower pace "island time."
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