4 years!
4 years ago, in October 2020, I was given a diagnosis that would change my life. And in November 2020 I started taking the drug that helps me live it.
You probably already know my story: never-smoker, healthy (I thought) 62 year old, waking at night with epigastric pain and occasional headaches. We thought it was GERD. My gastroenterologist ordered an ultrasound to look for gallstones. Instead they found masses in my liver. Another week of scans and biopsies confirmed tumors in my liver, adrenal gland, lymph nodes, lung, bones, and brain. The diagnosis: Stage IV Non-Small Cell Lung Cancer.
I was lucky to have an amazing team at my local Cancer Care Institute. They knew the importance of:
- identifying the genetic makeup of this cancer, called biomarker or oncogene testing, and
- waiting to start treatment until we had this vital information.
In the first week of November, my ocologist called me with the "good news" that my cancer is caused by a rearrangement in the ALK gene. It's treatable with a targeted oral medication. Not curable, but treatable, for an unknown period of time.
So began my journey with targeted therapy. My Tyrosine Kinase Inhibitor (TKI) is called Alectinib. In the first few weeks on Alectinib, my tumors shrank. By 4 months I had a "complete therapeutic response", meaning we can no longer see any tumors on my scans. This response doesn't happen often, so I'm thrilled. But I know individual cancer cells, called persistor cells, still live in my body. Some day these cells will develop resistance to Alectinib, and my tumors will reappear. There is currently one other drug I can try when my cancer progresses. After that, everything is experimental. I've already surpassed the average time patients on Alectinib survive without progression.
For now, I live in harmony with my cancer. I have manageable side effects. And I've learned that I can't take anything in life for granted. That means doing my best to find beauty around me, spending time with the important people in my life, and visiting some places I've always wanted to see. So far, that's included London; Costa Rica; and a cruise to Spain, Italy, Greece, and Croatia. Not bad! My pup Gracie keeps me active and is a great snuggler when I need it.
I stole a motto from my friend Kirk, an 11-year ALK cancer survivor: Don't Waste Your Cancer. I'm joining this fundraising effort to support research that's so close to finding ways to improve the length and quality of life for everyone with ALK+ Lung Cancer. Thank for you contributing if you are able. Thank you for showing me so much support. Thank you to the fast and ferocious friendships I have made in my ALK+ group. In only 4 years I have known and lost some wonderful friends. I'm better for having known each of them. Thank you to my amazing oncology team who provides state of the art cancer care in rural South Dakota. And thank you to my guardian angel who woke me those nights in 2020 to say "I love you; please get checked".