Update #12 — It’s Quiet Uptown

HamiltonI went to see Hamilton yesterday. It was kind of a fluke. I felt a bit badly when I scored seats for our family. I wanted to see the show, but not as desperately as I knew many others did who didn’t get as lucky with the ticket lottery. Still, I felt grateful and excited to see the show. Living with this diagnosis has taught me that some things are just out of our control. I have to take the good with the bad. I have to embrace new experiences and gifts while I can, adding them to my memory collection to cherish, something to enjoy in the moment and also hold onto when things aren’t so good and I need help remembering the point of this whole human experience.   

Before going to the performance, I listened to the Hamilton soundtrack many times. I thought I had anyhow. Apparently, I’d really only heard Act 1. So many songs in Act 2 were new to me. One of the new-to-me songs had the refrain, “There are moments that the words don’t reach.” Yes, I thought. There are. I blog less and less because I feel I keep repeating myself. I try to write, but my words just don’t reach.

I had a good PET scan report and labs results last week. Better than good, my doctor friend corrected me: great. Since my diagnosis 3 ½ years ago, I have gone only 2 months between scans, sometimes 3. This was the first time I successfully went 4 months between scans. That might not seem like a big difference, but it was huge for me. Every 2 months or so means there’s hardly time to recover before it’s time to go back again. Every 2 months means every nurse, every radiology tech, every receptionist, knows me. Every 4 means only some of them do. Every 2 months means going into the hospital, making appointments, getting confirmation calls, checking for test results, reviewing reports and reanalyzing treatment plans is part of daily life, and the rest of life has to be squeezed in the small gaps. Every 4 months means the rest of life can take the lead for a while, and my medical life is the exception that has to be fit in around it. Every 4 months, instead of every 2 or 3 might not sound like much at all, but it is a gift of time that words don’t reach.

My doctors and I don’t know how many more of these 4 month windows I can hope for. We’ll keep trying for them until a symptom or a scan report tells us I can’t. This has happened many times before and it’s bound to happen again. But for now, we push away the unimaginable. All is quiet uptown