Living with Lung Cancer

On the last Sunday in November 2021, I was directed to a freezing-cold trailer adjacent to St. Joe’s, where I sat in a well-worn dentist’s chair surrounded by boxes labeled RADIOACTIVE. Technicians injected a solution into my veins before wheeling me in for a PET imaging test.

After experiencing intense chest pain in October, an X-ray at St. Joe’s emergency room had revealed two spots on my left lung. The ER physician was betting on pneumonia and ordered an antibiotic, but my GP wasn’t so sure—so here I was, radioactive sugar coursing through me.

The results came back two days later. “We’re still concerned about those spots on your lungs,” the pulmonologist said. “I’m scheduling you for a lung biopsy ASAP.”

“How are you feeling?” a friend asked. when I called her. “Angry? Scared? Worried?”

“I’m just in shock—but I don’t have anything to worry about. Really,” I reassured her, citing what had become my mantra: “I’ve never smoked. I don’t have any family history. We checked the house for radon—not a problem. No trips to coal mines or asbestos fields.” I certainly couldn’t have lung cancer.

But Emily was also on my mind. A daughter of a close friend, Emily was just twenty-six when she was diagnosed with Stage IV metastasized adenocarcinoma—a type of lung cancer affecting increasing numbers of young women, all non-smokers. That brilliant, funny, endearing girl died an excruciating death in January 2020.

I certainly could have lung cancer.

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Less than a week later, five nurses inserted five needles into tiny ports that pierced my lung right under the clavicle. Then, the pulmonologist withdrew samples of tissue. The nurses warned me that 25 percent of these procedures end with a collapsed lung, and I should expect to throw up blood. They were right about the blood, but, fortunately, no collapsed lung.

The verdict came two days later. “It’s lung cancer,” the pulmonologist said. “I’m so sorry.”

Like Emily, I was diagnosed with adenocarcinoma, but mine was Stage III-A.

The pulmonologist—who by this time felt like a dear family friend—told us he’d contact an oncologist and thoracic surgeon immediately.

I felt like crawling into a hole. My husband wrapped his arm around me as I stumbled to the car.

“Well, we got the best possible news,” Mark told our kids minutes later, sitting in the hospital parking lot.

“What?” I gasped.

Apparently, everyone—except me—had anticipated a cancer verdict and had immediately moved on to gratitude that it wasn’t in my lymph nodes. I was feeling a lot of things, but gratitude wasn’t one of them. Yet.

The leading cause of cancer-related deaths in the U.S., lung cancer is responsible for more than 30 percent of men’s cancer-related fatalities and 25 percent of women’s. There are two categories: small-cell lung cancer (SCLC) and non-small cell lung cancer (NSCLC). Only around 10 percent of all cases involve non-
smokers. Ninety percent of SCLC patients are smokers or former smokers, but 85 percent of lung cancers, including mine, are NSCLC, which forms in cells that normally secrete substances—like lungs.

I slammed my laptop shut after reading the survival rate for adenocarcinoma: 18 percent for men, 25 percent for women at the five-year mark.

If I hadn’t been so terrified, I would have remembered to be grateful for the chest pains that had brought me to the ER.

—

During Covid, a friend sent me a New Yorker cartoon showing a woman studying a blank calendar. The caption read, “I’d love to meet up, but my calendar is packed with squares and sequential numbers.” That perfectly described my previous twenty months. But as soon as I was diagnosed, my calendar filled.

Within hours, St. Joe’s lung cancer nurse navigator called to set up appointments. Cheerful and reassuring, she laid an impressive briefcase in my arms and reviewed the handouts. On the top was “Lung Cancer Stigma: How to Cope.”

The next day, I had a pulmonary function test. I sat in what looked like an old-fashioned telephone booth, breathing in and out of plastic gizmos. “You did very well,” the nurse commended me at the end of the hour. I felt like a kindergartner who’d succeeded in counting to ten.

Next stop: the thoracic surgeon, a woman in her late thirties who exuded capability. My husband and I arrived with a long list of discussion points, starting with, “We didn’t know lung cancer has a stigma.”

It was obviously a sore subject. “The stigma exists because everyone assumes anyone with lung cancer is a smoker who brought the cancer upon themselves and deserves it,” she said. “Consequently, you won’t find the public support” other cancer patients experience. She didn’t blame smokers, either: “Those who are addicted to smoking started young—fourteen, fifteen—when their brains aren’t fully developed and addiction comes easily.”

Then she addressed our long list of questions. My cancer was an adenocarcinoma subtype—“when non-smoking women get lung cancer, adenocarcinoma is the kind they get,” she said. At least some of the spots in my lung’s upper lobe “didn’t light up on the PET scan—if they had, it would show a more intense and aggressive variety. You have a combination.”

She scheduled a partial removal—a lobectomy—for January.

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Thoracic surgery has two categories: open or minimally invasive, a brilliant friend in the health equipment field told me when I realized I had more questions. “Open surgery—the traditional surgical procedures—means the surgeon cuts a large enough hole to reach into the lung with surgical tools and both hands, to cut and remove the diseased area.” Minimally invasive surgery, she added, is done with remotely controlled tools inserted through much smaller holes. The surgeon sits at a computer console and manipulates the tools like an expensive and ultra-
challenging video game.

Not every hospital can afford the $2 million devices, but here—after the chest pain that started me down the road to diagnosis—was another thing to be grateful for: St. Joe’s has them. First my lung would be flattened, my friend explained, then the cancer-riddled sections dissected. Tiny rolls of plastic bags would be inserted into the holes, the tissue deposited in them, and then removed and sent to
pathology.

Several times a day, phones rang as pre-surgical appointments became available. Meanwhile, texts, emails, and calls from friends and family members were overwhelming—and gratifying, encouraging, and supportive.

During Covid, our world had shrunk dramatically. But now I heard from long-lost friends, long-ago business associates, sorority sisters, former neighbors, and so many other dear people who had unaccountably slipped out of our lives. I felt grateful for their concern, but exhausted by updating and repeating what was happening.

Eventually, at the suggestion of other cancer veterans, my husband began limiting the calls to immediate family, and our daughter started a Caring Bridge blog, an indescribably valuable connection to the outside world. Meanwhile, the mailman delivered a mountain of reading material about cancers, cancer diets, alternatives to surgery, homeopathic options, pick-me-up stories, book club books, and scary
statistics.

On December 22, I had a bronchoscopy. The pulmonologist snaked a scope down my throat, through the vocal cords and into the airways, to take tissue samples for evidence of cancer in the lymph nodes. They were cancer-free.

The next day, the U-M oncologist called to say she had seen my pathology results, which showed a genetic mutation. This epidermal growth factor receptor (EGFR) helps healthy cells grow, but the mutation was causing my cells to grow too much.

A friend and professor of kinesiology immediately began researching genetic mutations for cancers. We learned that EGFR mutations occur in 10 percent of Western patients and in 50 percent of Asian patients with adenocarcinoma. Most EGFR mutations are found in non-
smokers and women.

As soon as the Christmas trees came down, the tests resumed. Blood tests, metabolic panels, chest X-rays. On the night before surgery, our minister called and prayed with us over the phone—which I found immensely comforting, and was probably the reason I could sleep that night.

On the day of the surgery, I was registered and ushered to the pre-op room by 6 a.m. to meet the anesthesiologist.

A team of nurses wheeled me into the surgery and pointed to a giant white plastic donut on the ceiling. Five fat udders were attached. My surgeon waved her hand at me from her console across the room, and my awareness faded.

—

Early the next day, my surgeon appeared with several residents and a big smile. “We got all the cancer,” she announced. “I removed the top lobe, the synapse between the two lobes, and for good measure, the top of the lower lobe. You had nine tumors—some were lined up behind the biggest tumor, like a deck of cards. You have one drain that may—or may not—go home with you.”

The days in the hospital are a blur. I remembered my sister, a breast cancer veteran, talking about the “post-op brain,” and I had one. When I spoke, I searched for the simplest words and had trouble remembering conversations and directions.

Six days after surgery, my husband drove me home, where I was greeted with balloons, flowers, and our daughter, who had flown in from Maine.

For nine wonderful days, our daughter perched beside me on the bed with her computer propped on pillows; she worked while I stared at walls or tried to read. We were wedged between our sixty-pound rescue dog and our son’s 110-pound Great Dane puppy. “This is like the Willy Wonka grandparents’ bed,” our son said, grinning.

Before this operation, when I made meals for others, I considered them simple conveniences. Since January, I know they are a signal that someone cares about you—sometimes someone you barely know. When the day feels aimless and yet a struggle, those meals are the highlight; they were appreciated more than I can say, gifts for the family and the soul.

Friends found other creative ways to show they care: a package of stress balls, a bag of “good reads,” a daily text with a cartoon, blankets, hand creams, a handful of flowers, offers to vacuum and walk the dogs. And cards, cards, cards—and prayers. Whenever I get discouraged, I pull them out and read them again.

On February 15, my husband and I met with my oncologist. Since all the cancer had been removed, I expected him to congratulate me on a successful surgery, mention that I would take a pill now and then, and promise to watch over me as I easily returned to a cancer-free future. But no.

“You have a 50:50 chance of having the cancer return within three years,” he told us, followed by, “Without treatment, the survival rate is somewhere around 18 percent by the fifth year.”

I excused myself and left for the ladies’ room, to gasp and choke. When I returned, he showed my chest X rays and graphs of therapies and survival rates.

“Does this mean chemotherapy?”

“No, pills. Since you have the EGFR mutation, you qualify for an oral targeted therapy, a pill you’ll take once a day for three years,” he said. “Patients without EGFR have a 44 percent survival rate after chemotherapy. Tagrisso will double that for patients with EGFR.”

I was about to feel some relief when he added, “Each pill costs $600.”

I thought: Six HUNDRED dollars? Times 1,095 days? That’s … more than $650,000!

But what I asked was, “Will I lose my hair?”

Not likely, he said, and handed me a printout of possible side effects as I asked about clinical trials, and my husband about combining chemo with pills.

The doctor shrugged. “It will make you both absolutely miserable for a year, and will only improve the survival rate by 5 percent.”

I researched the drug, confirming its benefits compared with chemotherapy. A St. Joe’s oncological pharmacist told me that with the pill, “Ninety percent of users are disease-free after two years. We have no data beyond two years.”

Then, thanks to our insurance company dropping the price of Tagrisso—generic name: osimertinib—and a pharmaceutical foundation covering part of the cost, we arrived at a much better price.

—

I’m now four months away from the surgery. I haven’t lived up to my surgeon’s optimistic “You’ll be back at 16,000 steps per day in three months!” After walking two blocks, my breathing sounds like an old-fashioned steam radiator, but it’s improving.

“I bet you’re writing every day and every night! What a great opportunity to write your Great American novel!” one friend enthused. I sheepishly admitted I could barely click on emails.

I’ve concluded that those mysterious chest pains that sent me to the ER in October must have been a “God-thing.” They brought so many unexpected blessings. I’ve learned more about myself and others in four months than I had in four years of college. At the top of the list: Patience IS a virtue.

An African proverb reminds us, “it takes a village to raise a child.” It takes two villages to confront a life-threatening illness: a village of healthcare professionals and a village of caring friends, relatives, chance acquaintances, and even delivery people.

How grateful I am for both villages.