DARCY'S STORY:
It’s that time of year for me. The yearly ob/gyn appointment, which leads to the yearly mammogram. It’s a favorite day for women everywhere.
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A few years ago there was all this hype because they were recommending only getting them every two years. The biggest reason is that they just cause so much damn stress for women. I went Monday and it started off the usual way. Pink top, open in front. Arms up. Smooshed breasts, etc. Nothing attractive. When you get a good tech it is not terribly painful. Very uncomfortable, but not actually painful. Then you go to the special waiting room with the other women in the pink tops. They bring you a carnation when they clear you to leave.
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“Do you want the new 3D mammogram? It is $60 if your insurance won’t cover it.”
“No thanks. My insurance won’t cover it. I already know that.” That was my first mistake.
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I watch several women get their flowers and leave. I always take a long time. I start the usual mental gymnastics of talking in my head. Don’t get nervous, that’s bad for you. You always wait and worry and you are always ok.
It actually got explained to me this time, partly by the poster on the wall and partly by the tech. There are four levels of breast density, A through D. I am a level C. Dense breasts make for difficult readings. That’s what the tech tells me when she pulls me out of the room to talk to me without bringing me a flower. “Because you are a level C, your doctor now has a standing order for you for a follow-up ultrasound after your mammogram.”
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“Ok. I know I’ve had them before.”
“You should know it costs $200 if your insurance won’t cover it.” Crap, they should’ve told me I was getting a bargain earlier with the 60 bucks.
“Ok. So will you call insurance before?”
“No. You have to call them. You can use this room.”
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This is when I start to get infuriated. I go through this with my orthotics too. Since when is it the patient’s job to make medical calls? I happen to lecture in the medical field and know how to be a patient advocate, but the average person does not have that experience. And even with that under my belt, I still am lost with this one.
My niece works in a medical office and she explained that there are thousands of insurance companies that all have different rules. I get it, but isn’t that why docs hire office staff?
You know how this goes. On hold. On hold. Verify who you are a thousand times.
“I’m sorry, what is the technical term for the procedure?”
I ask the tech.
“Breast ultrasound.” She seems a little shocked by the question because it wasn’t a tricky answer.
On hold. On hold.
“I’m sorry, but we need to speak to a medical professional about this.”
“Gee, that’s what I suggested.”
I walk over to the tech and have to practically force her to take the phone. She gives the woman the medical code and hands me back the phone. I feel like pickle in the middle and I think this entire scenario is ridiculous. I’m now on hold again and this time there are two confused techs standing in the doorway because they can’t believe I can’t get a straight answer from my insurance company. I can’t believe I’m the one trying to get the straight answer.
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“Good news. Your insurance will cover the ultrasound, but only if your doctor has pre-authorized it.”
I repeat it to the two techs in the doorway like a parrot who look at each other and shrug their shoulders. They have never heard of such a thing. Is that the same thing as a standing order? Back and forth, back and forth.
Finally, I have enough. “I WANT TO GO HOME. CAN I PLEASE JUST GO HOME? I’VE HAD ENOUGH.” I am now crying at this point. The techs feel terrible and say of course I can go home. I hang up the phone and I go take off the hated pink shirt. On my way out, the techs try to nicely tell me the test can be done anytime. I just need to straighten out the insurance thing and reschedule. I ask her if anything in the regular mammogram came back questionable. She said no. I told her I wasn’t straightening anything out through my tears. I tell her I’m not coming back. And because my depression level has been super bad for 24 hours before I ever walked in the door, I tell her I don’t even care if I have cancer.
Right now, I apologize deeply to my dear, dear brave friends who have survived breast cancer. Several of you amazing powerhouses read my blog, so please know I mean no disrespect. All I can say is that depression makes you think terrible thoughts. That day I was sure that a mistake had been made and I was the one who was supposed to have cancer and die instead of Tim (my deceased husband). Frankie (my son) desperately needs his father, more than he needs his mother. At the time, I meant it, but I know it’s depression thinking. Forgive me?
Sometimes I just shake my head and wonder what has happened to the world. When did it get all mixed up? Why the hell was I even on the phone trying to get medical codes? Aren’t I the patient? I got the flower because they didn’t find cancer, but I admit I came home and threw it out. I was just angry. And I spent almost two hours in that office. The next day my doctor’s office called. I assumed they were going to talk to me about the debacle of the day before. Nope. Just wanted me to know my pap came back positive for HPV virus. She explained it’s something you can get the first time you ever have sex, it just doesn’t show up. Nothing to worry much about though, just make sure you come every year to your checkups so we can keep on eye on you.
I always go to my appointments but I ask her what they are keeping an eye on? Oh. Higher risk of cervical cancer.
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Perfect. I figured that’s just the universe being pissed off at me for saying the day before that I didn’t care if I got cancer. I love being a woman.
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REFLECTIONS:
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It’s telling when the basic process of getting a routine test makes a person practically prefer cancer. And it’s not surprising. We know the logistical issues of being a patient traversing the healthcare system are what tend to crush spirits, patients' and caregivers' and clinicians' alike. I don’t think it’s simply just one last straw; these systems issues are so demoralizing because they reflect uncaring or unthinking design. In other words, they’re totally avoidable and that’s the final insult.
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The other issue that pops out at me here is how layered and loaded and triggering an office visit can be. A reminder how losses can stack and how new losses bring up old ones. We are big snowballs rolling through life sopping up grief bits along the way. Darcy reminds us why it’s so important to process our losses as we go, and that grief is such an important skill to acquire. If we do, we can own all the feelings that arise while also being conscious of how those turbid thoughts and feeling may affect others
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Finally, when it comes to the healthcare system and existential distress, I’m reminded how useful it is to cultivate a hardy sense of the absurd
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-BJ Miller, MD