“How can one capture genes that behave like ghosts,” Weinberg wrote, “influencing cells from behind some dark curtain?”
― Siddhartha Mukherjee,
Yesterday marked the official end of the Avelumab trial for this girl. A day trip over to DC to the NIH in Bethesda for final scans and labs. Cherry Blossom trees were in bloom everywhere..signaling that winter was over and life was renewing. I suppose, in a way, yesterday was this season ending for me and a new season starting today…
This entire journey started 29 months ago…..in a way it seems longer than that, then in other ways, it seems like it was just yesterday I learned of my pulmonary involvement, all thanks to an incidental CT ordered because I was having unrelated chest pains. I suppose if I start with that date, then it’s been 41 months ago…..I had never really stopped before now to realize I’ve been on this journey even longer than I had been telling myself. It really started that night in the ER where the CT was done….or I could even go back to 2011 when a CT was done and the results were never relayed to me due to a change in how a hospital identified patients. The lesions were new then and half the size….likely would have been the same journey, just more years of scans added in. So really, six years of my life, two of which, I didn’t have any knowledge of the lesions…..all leading me to the trial…and now leading me into this new season. Reality is….this has been my journey for 45 years…and now I’m looking at different roads to travel for RRP and pulmonary RRP…..this road is over.
When I started the journey, where I was on the ground working towards a treatment plan for pulmonary RRP, something I did the first trip without really having any purpose behind it….I randomly took a picture of my feet/shoes. Whether it was my intent or not, that picture became a “thing” I did in this journey. I’ve compiled some of those in a collage…and I can sit here today and remember the story of each shoe. The halls it walked, the doctors that it had a front seat to….the adventures I made along the way….the friends I laughed over dinner with, the family I got to see….the knowledge I gained….the joys and the sorrows along the way. (PS-notice the lack of Chicago level winter shoes….one would think I carefully planned events so that I could take advantage of “cuter” shoes.)
Today, I’m at a new road…actually, three roads…..once again looking at the forks in the road, uncertain as to which one to take….another Robert Frost moment.
- Systemic Avastin – real risks….very real risks.
- Wedge resection then systemic Avastin – see above.
- Monitoring with continuation of standard debulking….something that is unable to keep up with my tracheal disease at this time. Risking conversion of the pulmonary as well as risking tracheal lesions from blocking my airway, even with a trach.
- Drain the bank and escape to a deserted island in the south Pacific and write a book and be Jack Sparrow….
Option four looks the most appealing.
An update on the “sitting” …. I’m still sitting, but in a different way. Sitting to listen more than sitting to talk. Progress.