My journey started in July 2018. I had some pain and swelling in my right shoulder and I thought I pulled a muscle. By September 2018, I now had pain and swelling in my left shoulder. At the end of September, I had a routine appointment with my Endocrinologist, and I mentioned I pulled a muscle in my shoulder. When she touched my shoulder, I kind of flinched because it had become so sensitive. She also noticed I had swelling on my left shoulder. Immediately, she wanted me to get an MRI. The MRI showed a mass in my lymph nodes and I was then scheduled for a biopsy. The biopsy showed cancer in my lymph nodes consistent with lung cancer.
By October 6, I was diagnosed with stage 3b Lung cancer with a ROS1 mutation. My life turned upside down. How could this happen? I never smoked? Dr. Ha, my Oncologist told me I had a ROS1 mutation. He pointed out; being 60years old, female, Nonsmoker and Chinese was consistent with the findings ofROS1 in females in East Asia. Would I be able to have chemo or radiation? No. The cancer was too wide spread, centering in the middle of my chest. I would not survive. I started Xalkori, November 1, 2018. By the end of the first week, the swelling in my neck was gone. 1 month later, my Cat Scan showed no signs of tumors in my lymph nodes. Hallelujah!
The first week after being diagnosed, I started receiving cards of hope and encouragement from all over the world. I found out, my son put my name on a list of newly diagnosed lung cancer patients and there are people who go to this site and send cards of hope to the patients. Currently, I am still in touch with them and have built wonderful relationships. The past 11 years, I have spent my life advocating for adults with developmental disabilities and for 7 of those years, I managed a day program for them. I realized it was easy for me to advocate for others in need, than myself. The individuals I served gave me so much strength. They were also the hardest individuals to announce that I had cancer. I struggled whether or not to tell them or not. But, I always believed in being you, be truthful and strong. I had to practice what I preached. After many tears, and reassuring them that I was not going to pass away, I became much more calm and understood how lucky I was. I decided to go on Permanent Disability in January 2019. I felt I was ready to move on, travel with my husband and spend time in Australia with our daughter
and her family. My husband, my family, my friends and the special needs community have played a big part of keeping me hopeful. You can’t dwell on the past but you can make a difference in your future. We have a 4 year old granddaughter in Australia, and talking to her every week, inspires me to carry on with my life and enjoy every moment. The support of the ROS1ders group has also played a big part of my journey. Everyone in the group understands the ups and downs, the concerns and all the questions we live with everyday. I am thankful for them and I am thankful that I am continuing my journey with hopes for the future and continued success with Xalkori and all the research that continues.