Friends and Family,

About a year ago, after I had come back from the brink, I asked my oncologist what was the longest she had seen anyone stay on Alimta without progression. She said five years. That was my target, I decided. I wanted to make it five years or more. I lasted fourteen months.

Genevieve and I were both relaxed before this latest oncologist appointment three days ago, one where we would get the latest scan results. I was feeling great, and after sixteen and a half years, we’ve gotten used to dealing with scanxiety. That’s why we were so surprised to learn that two spots on my liver had grown. It means that the cancer has learned to work around my current treatment. It means it’s time for a new treatment.

Getting diagnosed with cancer is crushing. Most of us take months to get over the initial shock, though some never do. Over time, Genevieve and I have learned about how to live with cancer rather than spend our time worrying about my dying from it. However, each time the cancer starts growing again, which has now been five times for me, we are hit with that shock all over again. It means being swallowed up in fear that there won’t be another treatment that will keep me alive. It means going through grief all over again. There are waves of denial, anger, bargaining, depression, and eventually acceptance. All the while, we keep moving forward, at least with our feet.

That step forward isn’t clear. My oncologist took a liquid biopsy to see if I have a new treatable mutation, and I’ll be having a needle biopsy of my liver this coming week. Options include clinical trials in Denver and LA, or doing a harsher chemo to buy time until a slot opens in an amivantamab clinical trial in Portland. This week we’ll be waiting for biopsy results and getting info about the trials before we sit down with my oncologist to decide.

Regardless of how well we’re coping with grief, fear won’t go away until we know if the next treatment will work. If it does, the fear will shift to worrying about how long it will work. We’ve gotten pretty good at managing fear. I just wish we weren’t getting so much practice.



This post originally appeared  January 21, 2023, on Dann’s Cancer Chronicles. It is republished with permission.