Nobody Takes a Photo of the Waiting Room

At 8:00PM on Tuesday night, I huffed my way up 86 floors of the Empire State Building as part of the NYU Langone team to raise critical funds for lifesaving services. Just twelve hours later, I was in an NYU Langone radiology waiting room in Garden City waiting to be called for a regularly scheduled abdominal MRI. I’ll be back there for another one in two weeks.

Only one of those stories travels well and is social media worthy. The stair climb came with a team shirt, a finish-line photo, and people texting congratulations. The waiting room came with a clipboard, a paper gown and patient brochures.

The waiting room is the part of survivorship that rarely gets talked about. Treatment ends, but the appointments don’t. There are scans, blood draws, scopes, and follow-up visits, spaced a few months apart so none of them ever quite fades into the background. Most of them come back fine, but you still have to get through each one to find that out.

The scans take less than an hour. Getting the results takes longer and I check MyChart more often than I’d like to admit. I learned about my first diagnosis from that app, at a red light, so my relationship with it is strained to say the least.

I can climb 86 floors because I’m pretty good at things with a finish line. Stairs end. A marathon ends. Surveillance doesn’t. The best outcome is another appointment on the calendar, a few months out, and then another after that. There’s no training plan for survivorship, it’s just one foot in front of the other.

People tell me I look great, and I deeply appreciate that. Nothing about how I look, though, tells us what’s on the scans. I’ve had two cancers, fourteen months apart, and both were found because somebody went looking. I’m grateful for that, and it’s the reason I keep showing up to be poked, prodded and studied. Routine saved my life. I don’t dismiss it, and I don’t fully trust it either.

Thankfully, I have a job that lets me be in Garden City at 8:00AM on a weekday morning, good insurance, and an incredible support system. Plenty of survivors have none of that. They have work shifts they can’t leave, copays they put off, and a bus that doesn’t run near the imaging center. Missed follow-up is one of the quieter ways people fall out of care after cancer, and nobody gives it a name or a fundraiser. The people who miss those appointments aren’t careless. Getting there simply costs more for them than it does for me.

Don’t get me wrong, I’ll take the waiting room over the alternative every time. But the full picture of survival includes the part where you sit fidgeting in a beige vinyl chair for twenty minutes while a technician asks whether you have any metal in your body. You say no, and then you wait to be called into the shiny white doughnut.

In two weeks I'll be back in Garden City for another round. Nobody will give me a shirt or a medal, but I’m going anyway.