By Laverne MacDonald, as told by Haley Levine
I was diagnosed with inoperable stage 4 lung cancer in 2018. It has been a long and arduous journey. But thanks to her care team and innovative treatments, she was able to turn this deadly condition into a chronic disease. This is what I want others to know.
It took 7 months for me to get my diagnosis. Instinctively, I knew something wasn’t right. I had shortness of breath when going up the subway stairs, for example, and had stabs of pain under my heart. I lost consciousness while a technician took an ultrasound of my chest cavity.
At first, my primary care doctor suspected I had pneumonia. But when the ultrasound revealed inflammation and large amounts of fluid in my lungs, I was referred to a pulmonologist for a CT scan right away. This test lit up like a holiday tree. Not only had the cancer infiltrated both lungs, but it had also spread throughout my body, including my brain and spine. A week later, a lung surgeon performed a biopsy. My doctors told me I had a type of non-small cell lung cancer – the most common type of lung cancer known as an EGFR mutation.
When I learned all this, I was shocked. I was otherwise a healthy 52-year-old non-smoker and had no family history of any type of cancer. I was worried that I would be forced to give up my beloved job as a high school social studies teacher, and have to leave 140-year-old Brooklyn Brownston to go back to Florida to live with my mother.
ray of light
When my doctors diagnosed me, they also shared some good news: There was a new FDA-approved treatment available for this type of metastatic lung cancer. The treatment targets and blocks the mutated EGFR found in cancer cells. I started treatment in August 2018. Two weeks later, I was hospitalized with what appeared to be pneumonia. When the doctors did a follow-up CT scan, they made a shocking discovery: All my tumors, lesions, and nodules had been cut in half, and my lungs were filled with dead cancer cells. By January 2019, I was in complete remission.
It stayed that way for two years, until the spring of 2021 when my cancer recurred. I ended up at Memorial Sloan Kettering on a clinical trial where an experimental drug was added to my original treatment. By January 2022, the cancer was gone again. Then I switched to conventional chemotherapy and radiation, which I finished this summer. Now, I’m treating chemotherapy with a drug that helps prevent the growth of new blood vessels that can feed tumors.
My Support Corners
Throughout all of this, my primary care physician has been my roommate. Even after my diagnosis, when it was “handed over” to the pulmonology and oncology teams at various medical centers, she was still there, calling and emailing me to make sure I was okay. When I was interviewed by New York University Langone Medical Center to possibly participate in a clinical trial, for example, I called to speak to the researchers. It really served the quarterback. I kept the professionals assessing what I was doing and telling me their discussions with each other.
But what is the thing I am most grateful for? You really listened to me at first. Many doctors had written off symptoms of fatigue, shortness of breath, chest pain, and general malaise as just some of the normal aches that come with life. Instead, she did a thorough job and did all kinds of tests. I refused to give up until I found the root cause that saved my life.
Two years ago, I saw an endocrinologist for a non-cancerous thyroid-related problem. She asked me why my primary care doctor ordered all of these tests years ago and seemed critical. I fired her. It was a red flag for me that she would not work collaboratively with my other doctors and would not take my symptoms seriously.
It really takes a village when you’re treated for stage 4 inoperable lung cancer. Even though my family lives hundreds of miles away, they are always there when I need them. My mom and sister, who live in Florida, hop on a plane whenever I ask them to. I always have relatives who call me from all over the world, and friends who pray: Jewish prayers. Christian prayer. Hindu prayers. Buddhist prayer. My students and their parents – many of whom are doctors – were also exceptional. I always hear stories of loved ones living and thriving with other advanced cancers.
The importance of teamwork
While I have always been satisfied with my medical care, I was truly amazed at the level of attention I received when I was at Memorial Sloan Kettering. During my first clinical trial, while the team was responsive, everyone worked in their own silo. But at Memorial Sloan Kettering, I really felt like we were all in it together. If I have a question, someone always gets back to me the same day. I was in severe pain when I underwent the radiation. The team worked together to develop a pain management plan that included the steroid dexamethasone and opioids, and then also worked together to help me with the side effects that developed from those, such as insomnia and constipation.
Most importantly, they made it clear to me that they did not view my cancer as a death sentence, but rather as a chronic disease. It’s like type 2 diabetes or high blood pressure. Sometimes your medication stops working, and you need to find a replacement. There is no need to allow any cancer – even inoperable lung cancer – to shut down your life.