*September 2024*
My phone rang just as I unlocked the car door. It was the nurse; the doctor wanted me to come back in. As I locked the door again, I cursed: I bet I have Covid. But back in the treatment room, the doctor hesitated before he spoke. “So, the radiologist had a chance to look at the X-ray.” He paused. “He found a mass.”
“Well, @#$%,” I said, then apologized for my language. He allowed, as it was entirely appropriate. He must have said other stuff, maybe about a CT? To this day, I couldn’t tell you. I don’t remember very much about that night, either.
Two days later, as I drove home from the CT scan, the phone rang. It was the immediate care doc, calling to say the mass was bigger than the X-ray dude had been able to see. I should call my primary care doc when I got home to talk about next steps.
I spoke with her at midday and at day’s end. Much later, I realized that over the course of those hours, there’d been a volley of messages between her, her nurses, and the oncology center, all focused on getting me an urgent surgical consult.
The appointment got scheduled just in time for an ice storm that shut down the city. The consult was postponed for a week. Then came a parade of appointments: pulmonologist, oncologist, oncology radiologist. The tests: CT with contrast, brain MRI, PET scan, bronchoscopy with EBUS biopsy…. The diagnosis: lung cancer Stage 3A: “Extensive adenopathy,” plus a tumor the size of a lime, unresectable due to its location. My treatment plan: radiation to tumor and nodes, chemo, then consolidative durvalumab. The biomarker study came in, pages and pages of it. Adenocarcinoma with some squamous cell mixed in; mutations in EGFR Exon 21, L858R and Exon 20, S786i. I started radiation and chemo on April 1. April Fools! It seemed somehow fitting.
The durvalumab and radiation caused a storm of life-threatening inflammation– pneumonitis. I was on high-dose steroids for seven months, gained a boatload of weight and the “moonface” typical of big steroid treatment. In the process, a pulmonary embolism. Then, about three months after I’d been weaned off the steroids, a routine MRI showed a brain met. In early 2022 came gamma knife, followed by osimertinib.
I spent 2021 slogging from one thing to the next, managing nausea, fatigue, the inability to walk up a flight of stairs without gasping for breath. The hardest work was dealing with the sometimes-overwhelming crush of emotions, mostly grief. It felt like lung cancer had stolen everything I knew myself to be.
Before lung cancer, I was an avid bicyclist and hiker. It took months beyond treatment to build back my strength. The day I walked 2,000 very slow steps, hanging on to my husband’s arm, I felt like I’d won a gold medal.
I’d been working with teachers before Covid lockdown. With lockdown, when everything moved online, I was able to keep up. But I was so exhausted, I had a hard time tracking details. This is not good when you’re dealing with people’s professional certification. When schools reopened in September, I decided the risk of Covid was too great for me to return. So even though I finished out the 2020-2021 school year, I list my date of retirement as February 22, 2021. That’s the day the thoracic surgeon’s PA looked up from papers he was reviewing. “This sounds like a big freakin’ deal,” I observed. He didn’t smile. “It is,” he said. “Very.”
What a bummer of a story, eh? But there is so much good news– let’s focus on that instead.
I’ve been stable since spring 2022.
By working with a therapist, I was able to focus on resolving my own grief while sparing my family. (Well, at least some of it. Sometimes I was just so irritated by having cancer that living with me must have been hard. I apologized a lot….) (And I shouldn’t write about that in the past tense, to be honest.)
I love to bake. After treatment, I began to bake and hand-deliver birthday and graduation cakes to children in foster care and youth overcoming adversity through an organization called For Goodness Cakes.
I developed a meditation practice. Recently I learned that brain scans show meditation can reverse the impact of emotional trauma on the brain. (I recently wrote about that in my blog.) I started that blog to keep family and friends up to date on the good, the bad, and the ugly of this experience. It’s called Cancer Words: Stories of Lung Cancer. It’s about events, in the world and in my thoughts, feelings, and spirit (www.cancerwords.com). It often blends in research. It’s also very irreverent, and frequently laced with bad language. I write it for myself, but I’m always glad to hear when lung cancer folks find it useful.
When I was able to begin bicycling outside again, I set a goal of riding 65 very hilly miles to a local, beautiful waterfall. Although training for it took me a year longer than I’d planned, I did it. I sent postcards from the site to my oncologist, radiation oncologist, and pulmonologist, thanking them for making it possible.
I’m learning that I missed out on a lot in my former busy lifestyle. Our society doesn’t value much beyond striving for “success” does it? For me, joy is often quiet, private. It’s usually a small moment, like watching a hummingbird at a feeder. But I’m also finding connections between feeling at peace and experiencing joy.
My advocacy is also a quiet kind. I help facilitate a local cancer group and our monthly meetings. I’m active on the LUNGevity forums. I write lots of letters to legislators and participate in research studies (not clinical trials) when the opportunity comes up. I try to keep an eye on current EGFR-related research and share what I know, and I regularly check EGFR Resisters on Facebook. I want to always remember I belong to a very special group of people. Even when we lung cancer survivors are afraid, we are strong, we are hopeful, and we are very, very brave!
And I am so proud of us.
