I spent 4 hours on cancer today, and I’m not even being treated yet.
This morning I awoke to an email from Dr. Domchek’s “nurse navigator” who asked that I call her today to “work through the process” of getting an appointment with Dr. Domchek. After dropping my son off at camp, I returned home and called her immediately. Some of what is below was written as it happened, basically as part of my note keeping (which also happens as a series of sticky notes on my desktop).
I’ve gone back and lightly edited where it didn’t make any sense.
My phone call begins with Maria, who is amazingly nice, has the sweetest most gentle voice, and explains everything step by step. And it is a lot of steps. I have to first get registered into the Penn health system – she says when we’re done on the phone, she will transfer me to someone who will get me registered. Once I’m fully registered, Maria will do a breast intake. The new patient office will let me know what medical records they need and will tell me if they need a medical release form. Maria also says she will send me a medical release form, so I should complete it and send it back (I must print it and hand sign it, then scan it and fax it or email it back). We talk a bit about my insurance; I have a notoriously inflexible, greedy insurance plan that I already know is unlikely to pay for this consultation or anything outside of its own hospital network. Maria says that lots of insurance plans used to have a built-in system for second opinions – a way for those to be covered even if they are out-of-network – but more and more health systems are making that harder. Mine, of course, is one of them. She says I can ask to speak to Jenna, the financial consultant, who will know if this would be a covered expense and what it would cost if not. She says it wouldn’t hurt for me to contact my insurance company and find out myself, too.
I start making a to-do list:
- Complete records disclosure form and scan/email to Maria (must be signed by hand)
- Find out if insurance will cover any of this visit
Maria transfers me to patient intake to begin a medical record at Penn. I miss the guy’s name on the phone, but boy is he nice, too! (Philly gets a bad rap). He asks for the usual information – birthday, address, SSN, military status, etc, etc, we quibble over the spelling of my last name (it happens more often than one would think). I simultaneously scour my health insurance documentation for anything that might indicate that even a consultation with Dr. Domcheck will be covered. I find this, but it’s talking about treatment, not a physician visit:
Cancer chemotherapy and cancer hormone treatments and services, which have been approved by the United States Food and Drug Administration for use in the treatment of cancer, whether performed in a physician’s office, in an outpatient department of a hospital, in a hospital as a hospital inpatient, or in any other medically appropriate treatment setting, are covered, but they may require a Prior Authorization.
I’m also not convinced that “medically appropriate setting” means “anywhere you want to go.”
Once he has all of his information, I am transferred to the New Patient Coordinator’s office (I also missed her name). She says I will need to get insurance authorization to be seen and gives me Dr. Domchek’s MPI# and Tax ID# (I write these down even though I dont know what they mean or why I need them). She reviews my medical history, typing loudly as I respond; she tells me that Dr. Domchek is heavily involved in research and would like all of my medical records (I have sent them, I explain). She asks me lots of questions about my cancer, doctors I’ve seen, scans I’ve had, everything since 2012 – she wants dates for everything, details. Luckily I am a detail-keeper, and I can tell her everything she needs to know by pulling up iCal. She then explained how I go about getting discs of all of my imaging sent to them, as well as pathology slides (“I just get a box of slides” I ask. “and put them in the mail?” I ask. “Do they need to be frozen or something?” I ask. The answer is “no” if you’re wondering). As Maria instructed, I ask her if I can speak to Jenna next (hoping that she is not actually Jenna). She says she will transfer me. Jenna, fortunately, is on another call – I have now been on the phone for almost two hours. I use the opportunity to take a break for some greek yogurt and blueberries. And I add to my to-do list:
- Call insurance for prior authorization
- Figure out how to get films and slides from UPMC
- Mail films and slides to Basser
Jenna calls back within about thirty minutes. She says I am “definitely out of network” – but that Dr. Domchek is willing to see me as a one-time self pay ($255.65); so, she will review all of my records and consult, but if I want the Basser Center’s pathology or radiology experts to look at my slides or films, that would be an additional $200 per “surgical event” – so $200 to look at the biopsy from last week, $200 to look at the biopsy from 2013, $200 each to look at any ultrasound, mammogram, or MRI. I really only want them to look at the pathology, but I’m not sure if the Basser pathologists would really see anything different than the pathologists at my own hospital. Jenna tells me I do not need to have slides and films sent if I’m not going to pay to have those read by their people. She also says not to bother calling my insurance company – this is definitely not going to be covered. I like this Jenna – she seriously shortened my to-do list, which looks like this when all is said and done:
- Complete records disclosure form and scan/email to Maria (must be signed by hand)
- If I want Basser to look at pathology, get it from UPMC and mail it to Basser
It’s almost 1pm when I am writing this blog post (the parts I didn’t write during the phone calls), almost 3 hours after I began (disclosure form has been sent). It was a seamless process, one I am not at all convinced would have occurred at my own hospital system. I started with Maria, and she simply transferred me to one person, who transferred me to the next; each person was really nice, knowledgeable, and helpful. Having all of my records downloaded and ready to go also made it easier.
I should also acknowledge my privilege here: I could not have done any of this if I were not an academic on summer break with one child who is at camp. Who else has the time to do all of this crap? Go to the hospital, pick up imaging discs and slides, then take them to be shipped? If I had any sort of 9-5 job, or any job with limited vacation/sick time, how screwed would I be? I’ve already spent 4 hours of time at the hospital because of this lump, and now three hours on the phone this morning – I have three more appointments coming up, along with a possible trip to Philadelphia. And who knows about treatment – that could be an hour each day for all I know, for how many weeks? How do working-class people do this?
In a few months from now, my two friends/colleagues and I have a book coming out for which I wrote the afterword. In it, I write:
I am highly aware of the literacy strategies and rhetorical knowledge I have at my disposal…. I recognize, however, that my position as a woman who’s benefited from advanced training in writing and rhetoric is relatively uncommon. While many other women, of course, are highly educated and/or simply have had life experiences that have led them to deep knowledge of the roles language and persuasion play in healthcare situations, having a background in RHM might make me especially capable of self-advocacy in healthcare.
I have been thinking about this a lot of the past couple of weeks – how I’ve pretty easily been able to handle this situation. Like I explained yesterday – email from Dr. Domchek requesting some records. I went into my online health portal, sorted my records by type (first mammograms, then pathology, then MRI, etc), printed each as a PDF, saved each file by date and type of procedure, created a Dropbox folder, then emailed a shared link to her team). All of that required a set of skills that not every woman diagnosed with breast cancer (or, for that matter, every person diagnosed with any kind of cancer) has at their disposal. And it’s not only about skills I have, but the affordances of my job, of my race and class, of everything that has made this, so far, relatively easy for me. I spent three hours this morning sitting on the deck of a house we own (mortgage), drinking coffee, talking to these people on my recently paid-off iPhone as I looked up information on my laptop, while our golden retriever dozed softly at my feet.
I am a commercial for a cancer center; there is a banner over my head that says, “Your journey starts here…” and it’s an easy, breezy one covered in puppy kisses.
Or not.
update: I decide to have my recent pathology slides sent to Basser. If I’m going to do this to ensure I am getting the most accurate treatment, then I should get a second set of eyes on those slides as well. And, I find out from Maria, that the medical disclosure form means I don’t have to go get them and ship them myself – they can get them for me! Like I said, easy breezy puppy kisses…..
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