This summer, I walked into an urgent care clinic for a coronavirus test and walked out with stage 4 metastatic lung cancer.
There’s a medical term for an unanticipated finding unrelated to the original medical inquiry; it’s called an “incidentaloma.” I was one of the estimated one-third of Americans who avoided doctor visits during the pandemic, either out of fear of the virus or concern for the cost. I had ignored a minor but persistent cough for both reasons and it was only because my health care provider wasn’t offering testing and the lines were so long at the Dodger Stadium drive-through testing site that I walked into a random urgent care in a mini-mall where I was talked into the X-ray — something I assumed to be the urgent care equivalent of a cosmetic counter upsell — that led to my diagnosis.
My 22-year-old child and I were on our way home when the car broke down. My phone rang as we waited for a tow on a dusty shoulder of the freeway. “I’m so sorry.” It was the urgent care doctor. “I told you that your X-ray was fine, but I read the wrong scan. You have a concerning mass on your lung.”
My health has stabilised and my oncologist tells me this portends well for long-term management. I am working again and exercising...
It took over two months of speculation, scans, antibiotics and higher-level scans of something the size of an olive that doctors thought could be an old pneumonia lesion or another minor affliction. I was rooting for valley fever, a fungal infection that usually resolves on its own and sounded festive, like something that Moon Unit Zappa sang about in the ‘80s. Finally I learned it was a malignant tumour the size of a clementine, with cancerous nodes in both lungs. When something goes citrus, that’s a bad sign.
During that time, my mental health deteriorated. I fell so far behind on writing deadlines that I was in danger of losing a book contract. I had a car accident for which I wasn’t at fault, but was now too anxious to drive. I lost track of my finances and in one of the lowest points of my adult life, in the middle of the night, an unmasked man showed up at my home and repossessed my car for missed payments, in view of my child and neighbours.
US Congress’ coronavirus relief package provided eviction relief and forgiveness for some loans, but not car loans, and millions of other Americans have been forced to skip payments. I negotiated a return of the vehicle, but the effect on my credit score was ruinous.
Lung cancer in the time of COVID-19
I was also one of the 12.7 million Americans who the Economic Policy Institute estimates lost their health insurance received through their workplace or family member this spring. I went from my union’s employer-sponsored plan, with a $600-a-year family premium, to a plan that costs $1,000 a month for my child and me. If not for the Affordable Care Act subsidy, the premium would cost $600 more. The subsidy may or not continue, depending on which way the wind blows.
There’s never a good time to be diagnosed with stage 4 cancer, but in America you can find yourself saying, “You’re so lucky you got diagnosed with cancer in January,” to your new cancer buddies. A September diagnosis like mine means that I’ll hit my plan’s annual out-of-pocket maximum just in time for the new calendar year reset.
Having lung cancer while a virus that attacks the lungs is surging across the globe is a real double whammy. I’m unable to read the facial expressions of the new caregivers and doctors I’m suddenly dependent on, masked as they are, and I wonder what effect it has on them that they have never seen my face either. Most providers aren’t allowing patients to be accompanied to appointments and procedures.
You know when it seems most essential to be surrounded by friends and family? When diagnosed with a terminal illness. But as Rush Limbaugh, the conservative talk show host whom I never expected to have anything in common with, said of the health challenges caused by his own lung cancer: “Mine are no better and mine are no different and mine are no more special than anybody else. But it can feel like a roller coaster.”
I am lucky enough to have a wide support network, but I have learned that when you tell people you have cancer, they will want to give you things — just not the things you actually want. A dear friend was kind enough to purchase a juicer for me, only I don’t have the energy to use it and what I really longed for was a fleecy blanket. That juicer sits in my kitchen now, like a bad boyfriend, reminding me of the ways I’m not measuring up, in this case, by my failure to make juice.
Cancer survivor or cancer thriver?
A gift package from AstraZeneca, the company that makes the targeted gene therapy I am now taking, arrived at my doorstep. I was hoping it was a Groupon for a facial because one of the side effects of the medication can be acne, but, no, it was a daily pill counter with geriatric-friendly oversized letterings. In case I wasn’t already feeling like I’d aged a decade, that did the trick.
I’ve been offered prayers, antioxidant supplements and empowering language to define myself, only I don’t want to be someone’s cancer warrior, or crazy, sexy cancer survivor, or even a cancer thriver. “Thriver” sounds exhausting. I’m already in a competitive business and now I have to be a high achiever at cancer too?
My health has stabilised and my oncologist tells me this portends well for long-term management. I am working again and exercising, although the other night, I texted my neighbour because I was so fatigued that I didn’t have the strength to open a bottle of Gatorade. Could he give me a hand?
“I know this looks bad,” I told him, “but I’ve got great news: the medication is working, the tumours are shrinking!”
“So how long do you have to take this stuff?” he asked.
“The rest of my life.”
Silence. A chronic illness threatens to turn you into that most unsavoury of social pariahs, a Debbie Downer.
“But there’s an excellent chance that science will find a cure. So long as I survive this virus. But you know me, I’m a cancer warrior.”
Last week, I called Becca, a social worker and cancer counsellor, whom I am fortunate enough to get to speak with every week. I explained my situation. The medication I take every day retails at $500 a dose. I qualify for a subsidy, but only if I continue to purchase a premium insurance plan. Others in my cancer support group with lesser plans report paying between $1,000 and $3,000 a month out of pocket.
“I’m so grateful the therapy promises a longer lifespan,” I told her, “but am I your only client who wonders if it wouldn’t be better to check out earlier? I don’t want to become a burden to my family.”
“No,” she sighed. “I hear this all day.”
I’m lucky to find myself where I am today. If not for COVID-19, chances are that the cancer would have gone unchecked and spread even farther, so I guess the coronavirus saved my life. Or perhaps that’s overstating it, and the pandemic prolonged my life. I’m lucky for the intuition of a mini-mall urgent care doctor. I’m lucky for scientific advancements. But it will take more than luck for me to afford the lifetime of care this diagnosis requires.
Can I interest anyone in a new juicer? It’s never been used and I’m willing to let it go for a good price.
— Annabelle Gurwitch is the co-host of the “Tiny Victories” podcast and the author of the forthcoming book “You’re Leaving When? Adventures in Downward Mobility.”