Having become a "complex case," I decided to find a first-rate cancer center and let them coordinate my care. It seemed too complicated to try to find and coordinate a kidney guy and a stomach guy and an oncologist on my own, going on nothing but recommendations from people I know personally. With some pleading and an extraordinarily helpful scheduling nurse (thanks, Teresa!) I found myself talking to a stomach surgeon at the U of C. He seemed sharp, and asked me if I had questions, and actually listened. "And who would do the surgery?" He would, of course. "And how many gastrectomies have you done?" Two.
I was on my own again, letting the U of C do their tests and guide my decisions, but finding surgeons on my own. It seems petty to note, but I didn't have moments of real depression until I had to get and coordinate tests and appointments. Most surgeons see patients on one, or maybe two days a week. I'd been told that I had to "take care" of the stomach within "a few weeks." So getting appointments seemed to be literally a matter of life and death. I would call and simply beg. I pulled every imaginable string. Then they'd call back and offer me the exact same time that someone else had just offered me. More calls, more begging, more favors from acquaintances. Out of everything that's happened in the past few weeks, it was the scheduling that nearly broke me. As one sympathetic oncologist said to me,
Hearing what it's like for you to have to choreograph all these appointments reminds me yet again what an absurdly chaotic mess we're in. It's like a chess game where someone forgot to instruct anyone what the rules are.
But people came through for me in a big way. One surgeon said to me, "Do you realize that three different people called me about you? Do you know that every Iranian physician in Chicago has called Dr. S about you? Is your dad some kind of bigwig?"
"When the network goes into action, it's out of my hands."