The Journey Begins

Part 1: Why Do I Publish About My Lung Cancer?

This is the first time I’m writing a blog. I was a professor, loved my job, worked super hard and was at the peak of my career. I am a very privately person, do not have many friends except my close relatives. My memories are vague during the first two and half years of treatment after my diagnosis. But I hope if I can write down what has happened during my cancer diagnosis and treatments, it can help others feel less alone.

I was diagnosed with advanced (Stage IV) non-small cell lung cancer (NSCLC) Adenocarcinoma (ROS1) rearrangement in June 2015, when I was 50 years old. The cancer had already metastasized to my brain. I have never smoked anything in my life, and rarely drank alcohol.

Before I was diagnosed…

Three years ago, June 20th, 2015, I got a phone called from my family physician. She told me that my brain CT scan results had been come back – I had brain cancer. She urged me to go to the ER right away where a doctor was expecting me, so I went to the ER panicked and numbed at the same time.

Several months before I was diagnosed, I noticed that I couldn’t use chopsticks like usual, a strange experience as a Chinese to not be able to use the chopsticks. Then I noticed my handwriting was gradually shrinking within each single sentence. If I didn’t pay attention, I couldn’t hold a cup of tea. My older son, who was a medical school student then, was quietly concerned and suggested that I check with the doctor right away.So I pushed for an CT scan.

I had been seeing a brain specialist for two years before I was diagnosed. My right eye lid sometimes droops. The neurologist always did checkups on my motor control function, arm and leg strength, eye sight and other sensations. I was always fine.

My first experience in the ER and the “terminally-ill patient floor”…

I remembered in the ER, the nurses took my blood, put me through a CT scan, MRI, X-ray etc. The doctor came to talk to me… When everything settled down, I was left alone, lying on the bed with all the equipment flashing and beeping. The feeling of helplessness, being nobody, losing control of my life and my body overwhelmed me. A hollow feeling filled my chest. A deadly silence surrounded me. They kept me in the ER for three days, and then sent me to the “terminally-ill patient floor”. I don’t know the technical name of the floor, but the majority of the patients from this floor were at their last stage of life. There were several patients like me waiting for their test results. There was a young man, around 25 years old, in one on the “terminal rooms”, we met in the activity room, he was like me, waiting for the final results. I somehow felt a vague sense of comfort knowing that I wasn’t the youngest one. Those days lying in my bed, I read a lot online – brain cancer, lung cancer, preparation of wills (we didn’t have one), palliative care, assisted suicide, survival statistics, diet, spirituality practice…

I felt like it took almost no time until the doctor told me I had lung cancer metastasized to brain, and I had to go to the oncologist. I could not wait to pack up my stuff and leave that place. The first day when I was sent to the “terminal room”, I learned that I could either stay there to die or die at my home. Originally, I could not imagine dying at home, but two weeks later, I seriously told my husband that I wanted to die at home. The ER is heaven compared to the “terminal floor”, but home is heaven compared to the ER.