This is day two of a week long visit from our twenty six year old son August. We hit the ground running yesterday, with a trip to Massachusetts General Hospital. David and Peter came along as well, and August got his first peek into this particular window of my life.
It turned out to be a bit much for him. A lack of geographical proximity has provided August with an emotional distance from my cancer; accompanying us on a visit to the hospital brought it all home, and shortly after we were shown to our private room, he broke down.
When Dr. Shaw came in, it was just David and myself. She asked some careful questions as to how I was feeling. Great, I said; heaps of energy and rock solid resolve. But when I lay down at night, the crackling/wheezing in my lungs was a potent reminder of where I was heading.
I had in fact just arrived: in clinical trial parlance, progression. Defined as (not 30%, as I stated in an earlier blog–now corrected) 20% progression from the nadir–or the least amount of measurable cancer in my lungs since starting trial. To break it down another way: A positive response in a clinical trial is defined as a 30% or greater reduction in tumor burden. Ultimately, my cancer decreased in measurable area by 63% ; that was my personal nadir. My latest CT scan shows a 21.8% increase from that lowest point. However, I still have approximately 40% less cancer than when I started this trial.
My cancer is returning or progressing relatively slowly and I continue to maintain an exceptionally high performance status, (ability to complete daily tasks). If this were a standardized rather than experimental treatment, I would undoubtedly eke several more serviceable months from it.
As a participant in a clinical trial, I am bound by protocol (literally). Happily, Dr. Shaw pulled a rabbit out of the hat; Novartis has agreed to let me to stay on LDK378 for one more cycle. We now have six weeks to figure out where to turn next, and that softens the blow considerably. Soon, I will embark on a new adventure. In the meantime, life will be lived to the fullest.
After saying goodbye to Dr. Shaw, we collected the boys and grabbed a late lunch. Not deterred by the fact that it was already half past three, we continued on to Ipswich and Crane Beach. Arriving just as the crowd for the day was thinning, we were met by clear skies and balmy weather. August and Peter took a quick dip in the chilly Atlantic and soaked up the late afternoon sun while David and I walked the length of the beach as the tide came in.
But we weren’t finished yet; August had requested dinner at the Clam Box, where the four of us worked our way through two enormous plates of fried clams.
Stuffed, but with much food for thought still on our plates, we headed home.