At the moment, I have a cystoscopy every three months. I am in the “close surveillance” period that follows treatment of bladder cancer. I’m not sure what winds me up more, having the cystoscopy itself or having the labs required for the cystoscopy.
In a humane world, the doctor’s office would call to schedule tests and would already know my insurance company’s rules. I would drop by the office, get labs done, and I’d be ready for one of the most stressful events of my Fall.
The cystoscopy itself, in addition to being a catheter-camera threaded into my bladder, is done by my urologist and delivers results in real time. As he moves the camera around my balloon-like bladder, my doc serves as tour guide. We always visit the place where the tumor was removed. If he sees a tumor or anything else suspicious, he’ll tell me right then and there.
Chances are that he won’t see anything. Odds are in my favor, but there’s always the anxiety that he will. So there’s the big stuff, the emotions and the mortality and the trauma.
But then, there’s the other part. Getting the labs. It sounds pretty simple. Drive to the urologist’s office, pee in a cup, leave the office. It makes sense, at least I think so, that my urologist’s office is the best place to get lab work done on urine. The results will end up at his office, no faxing, no waiting, no getting lost in translation.
It seems sensible to me that the doctor’s office would get this ball rolling. The timing of the results is important and I foolishly assume that they will oversee the process. Instead, I have to call them. It’s Monday, ten days before the cystoscopy.
I show up to the office, and it’s the same old thing. I walk in and see lots and lots of men reading three-year old golf magazines. I ask for my cup and the shuffling of papers, scrolling of screens and busy conversation at the front desk begins.
Despite the detailed HIPAA document I’ve signed, the admins behind the desk talk about my chart at a volume everyone can hear. Someone back in the room with the walls of paper files, calls out her opinion. Are you “Carrie” or “Kerri”? Birthday 9-28? Nope, not me.
Finally I get my cup, walk back past all of the men in the waiting room to the shabby bathroom in the back, everyone knowing exactly what I’m doing. I do my thing, hand the cup to the lab clerk, and off I go.
When I get home that evening, a message on voice mail tells me that insurance won’t cover the lab test. It’s 6 p.m.
I know that I can’t get to their office tomorrow because I have to leave my house at 7:15 a.m. and won’t return until 8 p.m. Even though I’m not a doctor, my job is important, at the very least to me.
When I get to work the next day, I call and get the story. My insurance will not cover their office’s lab work. My urologist is “in network” but his lab is not. (Which, of course, makes sense to absolutely no one.) In order to get the lab work done, I will have to drive to my GP’s office, more than 30 miles away. My work schedule won’t easily accommodate this.
So, I call the insurance company. They assure me that they will cover the lab work. I call the urologist. They assure me that they’ve spoken to the insurance company and it won’t be covered. I ask how much the lab work will cost. They don’t know and will have to check.
The next phone call was surely scripted by Laurel and Hardy. One of the admins explains the insurance problem and the cost of the test, while the lab clerk speaks in the background. I ask questions. The admin repeats the question to the lab clerk. The lab clerk asks a question. The front desk repeats the question to me.
I want to scream or cry or hang up. But, I can’t. If I don’t get this test, I can’t have the cystoscopy. And I’ve already burned up significant emotional fuel anticipating this.
I call the insurance company again, which assures me the lab work is covered, promising me the conversation is being recorded in case I need proof.
I call the urologist back. They tell me my urine has been discarded and I’ll have to come in to give another sample. But there’s this pesky problem of having to work that keeps getting in my way.
I finally get the sample to them, but I am almost distraught about the timing. These tests require three days for the technical part and who knows how much for the clerical part. It’s Thursday, and my scope is scheduled for Wednesday. Will there be enough time?
They aren’t sure but they’ll ask the doc. “Asking the doc” is akin to “the check is in the mail” in medical land. They and I know very well that it will be, at best, at the end of the day Friday before he gets the message.
At this point, I begin to tell them about my emotional state. I tell them what it’s like to show up for one of these tests–a test that will tell me if my cancer has recurred–and not be able to have it. I tell them that I need the doc to call me.
On Friday, during a workshop that I’ve helped to plan and that is a critical part of my job, my phone begins vibrating. It is my doc, but there’s no way I can take the call. I’m at the front of the room, right in front of the keynote speaker, my boss at the table to my left. It kills me to let the call go to voice mail, and it kills me to wait to hear the message.
Voice mail assures me the cystoscopy can go on whether the results are in or not. It has taken five days to sort out a urine cytology, and I have ridden the stress tilt-a-whirl that is health care.
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