By Lavern McDonald, as told to Hallie Levine
In 2018, I was diagnosed with stage IV inoperable lung cancer. It’s been a long, hard journey. But thanks to my care team and innovative treatments, I was able to turn this deadly condition into a chronic disease. This is what I want others to know.
It took 7 months to get my diagnosis. Instinctively I knew something was wrong. For example, I started experiencing shortness of breath when I walked up the subway stairs and had shooting pains under my heart. I fainted while a technician performed an ultrasound of my chest cavity.
At first my doctor suspected pneumonia. But when the ultrasound revealed inflammation and large amounts of fluid in my lungs, I was immediately referred to a pulmonologist for a CT scan. That test lit up like a holiday tree. The cancer had not only infiltrated both lungs, but 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 heard all this, I was stunned. I was an otherwise healthy 52-year-old non-smoker with no family history of cancer. I feared that I would have to give up my beloved job as a high school social studies teacher and leave my 140-year-old Brownstone in Brooklyn to move back to Florida to live with my mother.
When my doctors diagnosed me, they also shared good news: A new, FDA-approved treatment was available 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 admitted to hospital with what appeared to be pneumonia. When doctors performed a follow-up CT scan, they made a shocking discovery: all my tumors, lesions, and nodules had shrunk in half, and my lungs were simply filled with dead cancer cells. By January 2019 I was in complete remission.
I remained that way for 2 years, until my cancer returned in the spring of 2021. I ended up at Memorial Sloan Kettering in a clinical trial that added an experimental drug to my original treatment. In January 2022 my cancer was gone again. I then moved on to conventional chemotherapy and radiation, which I completed this summer. Now I’m on maintenance chemotherapy, along with a drug that helps prevent the growth of new blood vessels that could feed tumors.
Throughout all of this, my doctor has been my rock. Even after my diagnosis, when I was ‘transferred’ to the pulmonary and oncology teams at different medical centers, she was still there, calling, texting and emailing me to make sure everything was okay. For example, when I interviewed with NYU Langone Medical Center to possibly participate in a clinical trial, she called to talk to the researchers. She really served as a quarterback. She kept the specialists informed about how I was doing and informed me about their conversations with each other.
But what am I most grateful to her for? She really listened to me in the beginning. Many doctors would have written off my symptoms of exhaustion, shortness of breath, chest pain, and general malaise as just some of life’s normal aches and pains. Instead, she did a thorough investigation and ran all kinds of tests. She refused to give up until she found the cause, which saved my life.
A few years ago I saw an endocrinologist for a non-cancer thyroid problem. She asked me why my doctor ordered all those 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 does take a village when you are treated for stage IV inoperable lung cancer. Even though my family lives hundreds of miles away, they are always there when I need them. My mother 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 extraordinary. I always hear stories of their own loved ones living and thriving with other advanced cancers.
Although I have always been satisfied with my medical care, I was truly impressed with the attention I received while at Memorial Sloan Kettering. During my first clinical trial, everyone worked in their own silo while the team responded. But at Memorial Sloan Kettering, it really felt like we were all in it together. If I had a question, I was always called back the same day. I was in tremendous pain when I received 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 the resulting side effects, such as insomnia and constipation.
Most importantly, they made it clear to me that they do not view my cancer as a death sentence, but as a chronic disease. It’s like type 2 diabetes or high blood pressure. Sometimes your medications stop working and you need to find an alternative. There is no need to let any form of cancer – even inoperable lung cancer – block your life.