Jing Liu: She's a 1der

2025 turned out to be another year whose events changed everything. So much so that I cannot see life in the same way again. At the end of last year, life was still in full swing. I just wrapped up two studio courses at two universities. I spoke about the ambitions and anticipations for the new year to my twenty staff at the year-end party. My older daughter just came back from Paris on her first winter break since starting college. On the Saturday night before Christmas, we celebrated En Brasserie’s last week with some friends over warm sake and Uni-rice, and I went to bed slightly tipsy but feeling relieved that winter break had finally started for me as well. At about four in the morning, I woke up with a sharp pain in my chest, as if some muscles were pulled and twisted inside, and I struggled to breathe. The same thing happened once the week before, and once one month before that. Both times at the onset of my period, and both times after a bit of alcohol. At 44, I have become aware that my body is on the decline. It will start to fail me from time to time, and I will learn to listen to it. I stopped occasional smoking altogether years ago, started exercising more regularly, and drink only 1-2 glasses a week. I eat healthy most of the time. My annual exam shows overall good numbers, except for a slightly elevated cholesterol. I go to my ultrasound and mammogram every year. The excruciating pain was surprising, but since each time it passed after a night of sleep, I put it off and hoped that they were inflammation-related symptoms caused by the confluence of period, alcohol, and stress. The third time warranted a closer look. I called a car and checked myself into the ER at NYU. ECG showed no heart problems, but chest X-rays showed a large lump. I was hospitalized immediately, and the word cancer was uttered for the first time. I was discharged on Christmas Eve, after receiving my first CT scan, my first MRI, and my first thoracentesis. But it wasn’t until the biopsy confirmed the presence of Adenocarcinoma and possible Sarcomatoid Carcinoma in my pleura, lungs, airways, and lymph nodes by Dr. Chachua at NYU Cancer Center on the day after Christmas that I accepted the fact of a stage-4 cancer diagnosis. Apparently, the excruciating pain was caused by the cunning 4cm mass pressing on my spinal nerves, probably exacerbated by menstrual and alcohol, which turned out to be a much-needed warning sign. Despite the bleak prognosis, I was ready to fight. I started preparation for chemo and radiation immediately, and got a second thoracentesis, which was more painful than anything I’ve ever experienced before. Before Christmas Day, I did not feel short of breath or cough at all, but by New Year’s Eve, effusion was a real thing. I was in bed, on steroids and painkillers, and scared to look ahead into 2025. 

January was my crash course for gene mutation-driven non-small cell lung cancer. Lying in bed, I read research papers, company reports, statistics, definitions, personal accounts, and books about dying. I made a list of all the ROS1 specialists in the world, joined the ROS-1ders FB group, and ordered myself a cap. I opted for Repotrectinib instead of Crizotinib as my first-line TKI. Although the MRI didn’t show any abnormality in my brain, at this point, I didn’t hesitate to be extra-cautious. After some FedEx delivery issues, I finally received my first bottle of Repo on January 15th. On the same day, after popping my first TKI pills, my husband drove me to MSK to see Dr. Drillon for a second opinion. I was so dizzy from the drug that I almost couldn’t walk from the parking to the elevator. Dr. Drillon’s team confirmed mostly what Dr. Chachua said, with an extra bonus: NVL’s trial will close at the end of January. So if I didn’t tolerate Repo well, it’s a good option to sign up for the trial now, so I did. Repo was very effective. Within three days, my cancer symptoms subsided, and I was off painkillers. The dizziness got better over time, so I was hopeful that the drug was right for me. However, on the sixth day, my whole body's nerves started aching, and I started to develop a fever. I was back on steroids and antibiotics, but it did not help much. I stopped Repo after nine days, and officially joined the NVL trial.

February was blissful. Switching my test results and tissue samples from NYU to MSK was not a walk in the park, but I was physically well enough to make the many trips up and down the east side of Manhattan and talk to as many administrative people as needed to get them in the hands of my new care team. NVL was as effective as Repo, minus the side effects. To take my mind off cancer, a friend offered her place on the Pacific coast of Costa Rica. My father joined us from Sydney, and my older daughter joined from Paris on her spring break. I galloped on horseback on the beach at sunset, and swam in the majestic ocean every morning. I felt the desire and strength for life again.

I’m writing this from Amsterdam. I arrived here yesterday with my younger daughter for my mother-in-law’s 75th birthday party today. My daughter was doing a summer school for high school engineers in Karlsruhe, Germany. Before diagnosis, I would have never had the time to spend a week away from work like this, but now things are different and much better. A friend came to visit me from Frankfurt. Two weeks ago, she lost her mother to cancer, who was diagnosed at the same time as I. We hiked in the Black Forest, and met two elderly women in their 80s and 90s, one caucasian and one Asian, just like my friend and me, but 40 years older, at the top of a steep climb and the foot of a waterfall. We took a road trip to Alsace and visited a building I designed but never saw completed. The people working in the building were very happy to see me. My friend cried over beautiful wine, fantastic food, and the memory of her mother. Earlier in the week, I visited the German Literature Archive in Marbach since they invited us to join the competition to design their new building. I ran my fingers over the handwriting of Kafka, Rilke, Hannah Arendt, and Thomas Mann, my heroes. Last night, I had dinner with Debbie and Sarah, all in our forties and fifties, living with our cancers and divorces, and our five teenage daughters. Tomorrow, I fly back to New York. The day after, I will have my third scan since I have been on NVL for half a year now. Whatever the result, it will be the best one.