May, 8, 2023
It’s a funny thing about updates. Writing was easier when I was getting treatment infusions every three weeks. To pass the down time and fill in the space left behind when singing was impossible, putting words to paper opened a needed avenue for creative expression. Like singing a good song though, my desire to write requires a bit of drama. Perhaps drama isn’t the correct word to use here, maybe communicating a shared emotion based on the human experience is more appropriate. A bit of drama never hurts though when expressing a depth of feeling that validates our tears, our fears and our joys. Art truly does imitate life and my life these past eleven months has been blissfully calm. Peaceful subtleties are harder to write about but reading between the missing lines means wondering if the unshared news is good or bad.
Today’s health update is good. My April scans showed even more improvement in three watched lymph nodes, the only signs of (minimal) SUV uptake. When my SNMWO pulled up my PET/CT scans from May 5th of last year, the day I was admitted to the hospital for seven days with a partial small bowel obstruction, his comment was:
“It looks like a war zone in there.”
Yes, it did. There were explosions of bright lights in both lungs and throughout my abdomen telling us that the cancer was active and progressing. A war zone that was becoming increasingly more dangerous with symptoms to match. Then he pulled up my PET/CT from April 11th – the war zone was dark. As we scrutinized my body’s landscape we were awestruck by my response to this treatment. Stable is the word used here and stable is a good word in lung cancer speak. My side effects from my current daily oral targeted treatment remain doable and I remain on the prescribed dosage. June 3rd will mark one year since I began taking Mobocertinib off label for compassionate use.
Now for some really sad news, my SNMWO (super-ninja-most-wonderful- oncologist) has left Kaiser. I had one last appointment with him the day before he left which was tearful and yet full of gratitude for who he is and all he has done followed by well-wishes for his new and exciting opportunities. While I am sad, I am also grateful for the role he has played in my life the last almost seven years. He has been the strong and gentle bearer of good and bad news, the steady rock that understood my most fervent hopes and a realist who could think outside the box. He fought for me, comforted me and showed us that our doctors can also be cherished friends. Both Jim and I will miss him dearly. We’ve had a bit of time to process this news and consider next steps and I will see a new oncologist on Wednesday and see if we are a good fit.
“The only constant in life is change.” That used to be a frightening thought, familiarity is after all, just that; familiar, comfortable and knowable. But, change is inevitable and gives the opportunity to embrace the magic of resiliency as it is the key to riding the waves and flows of change.
It’s quite the ride. And with that, my latest update is complete.
xo