“But she never smoked a day in her life.”
No matter the audience, I always felt—and continue to feel—like I have to defend my mother against the stigma of lung cancer. I think that’s a problem of education. I, for one, had no idea that genetic forms of lung cancer even existed until my mother’s lab results came back positive.
And so, Nerdship, I am here today to share with you the story of my mother in the hopes that it will raise awareness for lung cancer: not just the smokers’ kind, but also the kind that blindsides you on a random afternoon in late March, when you get the news while you’re on the phone with your mother, just trying to waste time while you dust the house.
My mother was 63 when she was diagnosed with Stage IV epidermal growth factor receptor (EGFR) expressing non-small cell lung cancer. They should have caught it sooner. She had a persistent cough for years. They diagnosed it first as asthma, then laryngitis, then gastric reflux, and then, the night after she woke frightened and unable to breathe, a general vocal cord disorder. She had loved to sing for her entire life, and suddenly her favorite gift was stolen from her. She could no longer sing more than a word or two without coughing.
There were other signs, too, though we certainly didn’t think to put them all together: back pain that made it difficult to sit for long periods, headaches, random aches and pains. Turns out those were tumors in her brain, on her spine, in her liver, in her kidneys….
I’m not sure why they didn’t catch it sooner. Perhaps it was because she had no risk factors. She was young, she exercised daily, she didn’t drink much alcohol, she did her best to eat healthy (except on vacation), and she had never smoked (not even pot in the 70s, if you can imagine!). Doctors took x-rays, but they overlooked the tumors hiding in the shadows. By the time they saw them, it was too late.
Mom had radiation treatment to eliminate the seven tumors in her brain. Once that was over, she began taking a drug named Tarceva, which targets the EGFR mutations all over the rest of her body. When that stopped working, there was a round of chemo, then another round of the Tarceva. All of these drugs gave her side effects, but they also gave her another year and a half of life. She was brave the entire time, hardly ever uttering even a sigh of complaint, even when I’m sure she was in severe pain. She celebrated the good days and survived the bad in strength. She was grace.
My mother passed on October 17, 2011. My father was there, as he had been during her entire journey. My father’s younger sister was there, too. And just as my mother had done when she birthed me into the world, I laid on the bed beside her and did my best to help her make the journey home. (And as I don’t think I can give my mother a better tribute than the one I gave in my eulogy, I will send you to read that if you’d like to get teary eyed.)
So what now? Genetic lung cancer is not in the spotlight, so there are no screening protocols (okay, there are a few if you’re over 55). I might get a low-dose CT scan soon so I have a baseline to reference as I get older. What I will do for certain, though, is to listen to my body in the hopes that if I do express the same genetic mutation as my mother, I can catch it early enough to kick its ass for the both of us.
What can you do? Be aware that there are several different forms of lung cancer. Check your family history. Don’t let a persistent cough go for long without treatment. And if this story has touched you and you’re inspired to do something more, please consider volunteering at a local hospice center or donating to one of these worthy charities:
- Duke Homecare & Hospice: I cannot say enough good things about the nurses and staff at Duke Homecare & Hospice. They took care of my entire family during one of the most difficult periods in our lives, and our nurse’s kindness and compassion touched me deeply and will live in me forever.
- Uniting Against Lung Cancer: This charity in particular has done more to fund research around EGFR mutations and non-small cell lung cancer than any other I have found. You never know: Donations here might even help me in the future!
Above all else, I would ask of you this: If you are lucky enough to still have a mother around, pick up your phone and give her a call to tell her how much you love her and appreciate everything she’s done for you. Life is unbearably short, and none of us knows how much longer we have to love each other.