Spoiler alert: this post features zero gross pictures. Apologies to the disappointed.
Today was my most recent CT scan. As I mentioned before, I'm slated to have scans every three months for a year.
I prepare myself for the waiting, and yet I still find myself bewildered by the actual experience. In situations like mine, appointments are more suggestion than commitment. It's the trade-off for accessing a world-class specialist, and for him offering to review your raw test output with you in real time, same day. It's the knowledge that a patient in my situation will wait pretty much as long as is required to get whatever answers and comfort are available.
There is much variety within the waiting. Am I waiting in the wrong place? Did I arrive on the wrong day? Did I fail to prepare? Or is someone simply out to lunch?
Do I risk adding to my waiting by pointing out the waiting? Or is speaking up essential to ending my waiting?
Although this was my third time seeing Dr. T, I'm still figuring out his systems. Whereas my surgeon was with one hospital, Dr. T is with another. Everything I learned dealing with my surgeon is useless now.
And no matter how much I prep, it seems like curveballs are the norm. Today I arrived at 1 pm for a 1:20 pm scan, only to find out that the test would be done without the gross barium drink (that requires approximately thirty minutes to drink and thirty minutes to digest). While this was good news, it also meant sitting in the crowded radiology waiting room until the actual test time: 2:20 pm.
Each visit with Dr. T makes the waiting worthwhile. At our first appointment, Dr. T picked up on my interest in medicine - beyond my own situation - and since then he has happily indulged my every question and even laughed at my jokes. I'm grateful for the way he treats me, as if I'm part patient, part student and part daughter.
So far, our appointments have started with a brief pronouncement from Dr. T - this time that the initial read of my scan says nothing in my abdomen has changed - before doing a deeper review and chat.
At this visit, he pulled up my CT scan images and methodically talked me through his process of evaluating them, what he hoped to see and what he did actually see. He shared with me how he determines if a spot is a blood vessel, some other organ structure or something in need of further investigation. He has studied my liver and kidneys, and complimented my gallbladder, noting that while it often swells with bile after a few hours of fasting, but mine has not done so. I suppose that's good. We looked at my bones, my lymph nodes and the spaces in between.
Dr. T took extra time considering the area where my left adrenal gland used to be, its former 'nest' now marked with medical clips no one had told me about before.
"If there's trouble anywhere, it will most likely be here," he notes before adding "but it looks good."
Dr. T will review the more official radiology report that arrives in a day or two, and share anything we might have missed. But the expectation is that I will have my third quarterly scan in July.
And then? Well, that is the subject of today's reality check. After two more quarterly scans, the plan is for me to begin having scans every four months instead of three. In my head, I had thought perhaps six months, so I felt disappointment I hadn't expected.
But the tumor took a long time to grow so large (working theory: ten years) meaning patience is necessary.
And so it goes. Give me a day or two, and hopefully I'll be able to turn my focus to the good news instead of the long road ahead.