It’s been 5 days since my CT scan and I’m still enjoying the pleasantries that linger after ingesting bottles worth of contrast dye. I have this weird Pavlovian relationship with the metallic taste in my mouth, and the other effects that are better left undescribed. Unlike so many people who know their bodies well, I feel like me and my body are frenemies. Clearly we are co-dependent, but for reasons that remain a mystery to me, parts of my body take it upon themselves to convince me that there are tumors constantly popping up.
My body has gotten so good at fooling me, that in the past, I’ve actually seen things that weren’t there. I would take pictures and send them to my oncologist(s), and they’d tell me that everything looked fine. My husband would stand next to me while I pointed at what was clearly raised bruised areas around my mastectomy site, and he’d claim that he didn’t see what was so clearly wrong to me. I chalked it up to low-resolution images and bad lighting.
Angiosarcoma can come back as a subtle persistent bruise, or yellow discoloration of the skin, or a painless mass far away from any nerve endings, or painful lesions in bones, or symptomless tumors in the brain, or inexplicable pain radiating throughout your body.
The chances of recurrence are so high, that when I asked one of my first oncologists if he knew any long term survivors from this disease, he looked at me and stumbled through an explanation of why I needed to think of myself as an n=1 case, and to not compare myself with the statistics. He never did say whether he’d had a patient live into old age, so I’m guessing that the answer was no.
And so the stage has been set for me to become addicted, in some twisted sadistic way, for the prick of the needles that kick off scan day. The blood draws, the contrast injection, that sweet little butterfly that gets taped to my arm, or wrist depending on how hydrated I am. I rely so heavily on this process to either reset or end my sanity.
Unlike some common cancers, there are many times that we, the rare and mysterious, go from scan to scan waiting to see if an anomaly grows before ruling out metastatic growth. I have had numerous scans or MRI’s where a vascular lesion has popped up, usually too small to biopsy, so the only course forward is to wait. Wait for the next prick that will trigger a host of emotions that span the depths of despair, to a timeless sense of gratitude, and everything in between. They call it NED, but it isn’t really, it’s more like No Evidence of SH!T we can Interpret, so I’m going to start calling it NESI.
My oncologist called my a couple hours after my scan on Monday, because he’s a good man, and he understands that I will be frozen in a 2 dimensional pane of glass, so delicate that even a high pitched voice could shatter me until I hear the results. He asked how I was, and I could tell by his tone, that I was GOOD. After asking him how I should answer, he said, “great, you are great”. NESI once again.
How bittersweet it is and always will be, no matter how short or long I get to hear those words. And so it is that I find myself with new resolve to figure as much out as possible while keeping as tight a grip as possible on my mortal coil. Here’s to the reset, and to the inevitable ramp up until the next prick.