By Lavern McDonald, as told to Hallie Levine
I was diagnosed with inoperable stage IV lung cancer in 2018. It’s been a long, hard road. But thanks to my care team and innovative treatments, I was able to turn this deadly condition into a chronic illness. Here’s what I want to share with others.
It took 7 months to get my diagnosis. Instinctively I knew something was wrong. For example, I got short of breath when I walked up the subway stairs and had pains under my heart. I passed out while a technician ran an ultrasound of my chest cavity.
At first my family doctor suspected pneumonia. But when the sonogram showed inflammation and large amounts of fluid in my lungs, I was immediately referred to a pulmonologist for a CT scan. This test lit up like a Christmas tree. Not only had the cancer infiltrated both lungs, but it had 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 found out all this, I was stunned. I was an otherwise healthy, non-smoking 52-year-old with no family history of any type of cancer. I worried that I would be forced to quit my beloved job as a high school social studies teacher and leave my 140-year-old brownstone home to move back to Florida to live with my mom.
When my doctors shared my diagnosis, they also shared good news: There was a new FDA-approved treatment for this type of metastatic lung cancer. The treatment targets and blocks mutated EGFR found on 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 of my tumors, lesions, and nodules had been cut in half, and my lungs were simply filled with dead cancer cells. In January 2019 I was in full remission.
I stayed like that for 2 years until spring 2021 when my cancer came back. I ended up at Memorial Sloan Kettering in a clinical trial that added an experimental drug to my original treatment. By January 2022 my cancer was gone. I then switched to conventional chemotherapy and radiation, which I completed this summer. Now I’m on maintenance chemotherapy along with a drug that helps prevent new blood vessels from growing that could feed tumors.
Throughout this time, my family doctor has been my rock. Even after my diagnosis, when I was “handed over” to the pulmonary and oncology teams at various medical centers, she was still there, calling, texting, and emailing me to make sure I was okay. For example, when I was interviewing NYU Langone Medical Center to potentially participate in a clinical trial, she called to speak with the researchers. She actually served as quarterback. She kept the specialists informed of my condition and informed me of their conversations with each other.
But what am I most grateful to her for? She really listened to me at first. Many doctors would have dismissed my symptoms of fatigue, shortness of breath, chest pains and general malaise as some of the normal aches and pains that come with life. Instead, she did a thorough workup and ran all sorts of tests. She refused to give up until she found the root cause, which saved my life.
A few years ago I saw an endocrinologist for a non-cancerous thyroid problem. She asked me why my GP ordered all these tests years ago and seemed critical. I fired her. It was a red flag to me that she wouldn’t work with my other doctors and wouldn’t take my symptoms seriously.
It really takes a village when you’re being treated for inoperable stage IV 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, get on a plane whenever I ask them to. I constantly have relatives calling me from all over the world and friends offering prayers: Jewish prayers. Christian prayers. Hindu prayers. Buddhist prayers. My students and their parents, many of whom are doctors themselves, were also exceptional. I keep hearing stories from their own loved ones who are living and thriving with other advanced cancers.
While I have always been satisfied with my medical care, I have been truly blown away by the attention I have received while staying at Memorial Sloan Kettering. During my first clinical trial, everyone worked in their own silo while the team was responsive. But at Memorial Sloan Kettering, it really felt like we were all in this together. Whenever I had a question, someone always got back to me the same day. I was in a lot of pain when I was undergoing radiation. The team worked together to develop a pain management plan that included the steroid dexamethasone and an opioid, and then also worked together to help me with side effects that developed from it, like insomnia and constipation.
Above all, they made it clear to me that they do not see my cancer as a death sentence, but as a chronic disease. It’s like type 2 diabetes or high blood pressure. Sometimes your medication stops working and you need to find an alternative. There is no need for any cancer – even inoperable lung cancer – to bring your life to a halt.