General Update: Welcome to Medical Scranton

This one's for you, Kristina, and any other human being out there who understands the absurdity and frustrations of the healthcare system.

––––––––––––––––––

I was texting with my friend Kristina last night, who has had three rounds of cancer herself, sharing with her some of the recent events regarding getting this anti-seizure med, as she knows all too well the realities of a complicated healthcare system. She's been living it for a number of years. I often think to myself in the form of movie parallels, and when I was pondering the whole matter yesterday evening, one scene popped into my head from Home Alone, when Kevin's mom is at the airport, pleading with the gate agent to find her a flight to Chicago so she can get home to Kevin after the family mistakenly leaves him home alone over Christmas vacation. As Kristina and I were texting back and forth on the situation, I sent her this clip on YouTube and commented: "I don't have an 8-year old son I'm trying to get home to but I sure as hell am in some sort of Medical Scranton trying to get to my meds." 

She laughed and said, "Medical Scranton should be the title of your next blog."

I joked with her I was going to rewrite that scene to capture the latest situation I went through with this anti-seizure medication approval. I figured I'd do it at some point, but not necessarily for two hours starting at 1:36 am last night. I can always tell I'm on to something when my brain is buzzing with words at all hours of the night and I'm losing sleep, crafting and rearranging sentences and paragraphs, frantically typing things into my phone as fast as my fingers can move, but still not fast enough to keep up with my spewing brain. That's when I know it's the good stuff. 

Or at least hope it's the good stuff.

So, here we are. The medical version of Scranton as found in Home Alone aka Medical Scranton. 

If this post had opening credits, it would say “inspired by a true story,” not “based on a true story,” (there are distinct differences!) as it goes without saying, the whole thing below is made up, and I used only the skeleton of the real-life situation to recreate the movie scene. I do not write all this to throw my doc’s office under the bus (I am big fan of this doctor himself, but obviously less-than-impressed with his staff at the moment). Rather, I write it perhaps to illustrate the bigger picture of the absurdity of the healthcare system at times; it just so happens that my doc’s office is in my crosshairs. And maybe I also need it for my own catharsis, to find some levity in the midst of a situation that was far more stressful than it needed to be. 

I want to acknowledge that for all intents and purposes, I live a life of incredible wealth and privilege. What I had to jump through in a single week is what some patients spend years wading through (or particularly in marginalized populations, never have the same 'privilege' of wading through). They are already tired and worn out from the physical realities of their condition, only to have to fight their way through a very complicated health system, met with resistance everywhere they go. I’m not here to offer a discourse on what should or should not change within that system. 

This is my own story, one that is filled with a lot of safety nets, including my own personality that bends toward I'll be danged if you're going to tell me 'no.' A lot of patients don't have the kind of energy or drive to pursue things. At the first 'no' received from their doctor, perhaps many would have simply accepted that and moved on, believing that to be the end of the road.

This is merely a small glimpse into what it took to get my new anti-seizure drug approved. I truly do not know what came over me to push back so hard against the doctor’s office. In some ways, it was out of character for me to be so assertive, especially in a medical setting. I’ve often lamented times in the past when I felt like my concerns or wishes were dismissed and I never spoke up for myself. Well, clearly that was not the case here. I felt like I was turning into a trial lawyer, writing mental opening statements, and mapping out how I was going to present my case and what questions I would ask in the cross-examination. You want to tell me this is an impossibility to get this thing approved? Watch me get it approved. 

I even surprised myself on the whole matter.

If you haven't seen Home Alone, or if you have, but don't remember the clip, I would suggest watching here as a primer/refresher:

Now, here's my rendition of how that scene went down this past week in the form of trying to get this medication approved:

Doc's office: It’s impossible to get this medication approved.

Me [said with suspicion]: It's impossible?

DO: I’m very sorry ma’am, but it is Lent.

Me [exasperated, beating my head against the wall]: What about another phone number I can call? 

DO [clicking through things on their computers]: Nothing. We are all out of phone numbers you can call. May I help you get some Zoloft to calm your nerves? 

Me: No, I don’t want some Zoloft. I want my new anti-seizure medication. 

DO: I’m terribly sorry, ma'am, but we are doing some of what we can.

[DO motions for another patient to step up to the desk with their prescription.]

Me [to the next patient]: Go ahead, I'm sorry. Doctors to see, drugs to take. Oh, I see you’ve got a prescription there. That's good.

Me: [Shoves them out of the way, as I move back to the desk.] Look, I have been through two surgeries, rehab, radiation, and eight months of chemo. I’ve puked my guts up, I’ve lost my hair, I’ve taken a nap nearly every day since last June. I’ve called Express Scripts who told me to call me you who told me to call Express Scripts who told me to call you - wait, who I am calling and where the hell am I? 

DO: Medical Scranton. 

Me:  I am trying to get access to my new anti-seizure medication! And now that I'm this close, you're telling me 'it’s impossible' and 'a waste of time'? No, no, no, wait! This is Daylight Savings Time, the season of perpetually increasing sunlight! 

[DO attempts to interject but I keep rolling.]

Me: I don't care if I have to come to your waiting room every day with a bullhorn. If I have to sell my soul to the Holy Spirit himself itself, I am going to get approval for that new medication.

DO: Um, ma'am, if there was anything I could do to assist you in this futile endeavor today...

Me [desperate]: Do it. Do anything.

Me [I jump, startled by a fellow patient coming up behind me]: What?!

Fellow patient: Excuse me. 

[Speaks to the DO] Can you excuse us for a second? 

[To me] Can I see you for a second? 

[motioning back to the DO] Excuse us. 

[Back to me] I couldn't help but hearing you've got a little bit of a dilemma. Well, we've got a crisis ourselves. 

[Motioning to his fellow sojourners in Medical Scranton] Allow me to introduce myself, Joe Medski.

 

[Reaches out to shake my hand] Ya know, the alpaca shearing king of the Midwest? 

Me: I'm sorry, did you say you could help me?

Joe: Anyway, I'm rambling on here. We also are trying to get to our meds. You can only take so many alpaca hooves to the head before you need some help, right? Our medications got cancelled, too, so we gotta fax some things into the Vortex.

[Motions over to fellow patient standing to the side.] You see that guy in the jacket over there embroidered with an alpaca? He’s going to rent us a nice, big fax machine so we can get out of Medical Scranton. Now, I heard you had some problems? You're trying to get approval for a new medication, so you don't sleep or something? Ah geez, if you gotta get out of Medical Scranton, we’d love it if you wanted to fax in your paperwork with ours. 

Me [with hint of awe and profound gratitude in my voice]: You’d do that for me? 

Joe: Sure! Well, why not. What are alpaca shearers for if not to fax paperwork? We all gotta get our meds somehow. We gotta send some things to our pharmacy benefits manager on our way to our third-party administrator and then to our PPO with maybe a stop at HR or the FDA, but admittedly, we’re still a little confused on that last part. Regardless, we’d be glad to slide yours in there while we’re on our way to the next black hole.

Me [overwhelmed with gratitude]: Thank you. Oh, thank you.

Joe: If you don't mind going with some alpaca shearing bums.

Me: No, I'd love to.

[Cue rapturous music. End of scene.]

_____________

All that to say, no alpaca shearers were involved in my scenario, BUUUUUTTTTT, the alternative anti-seizure med that the doctor's office told me was going to be 'impossible' to get approved and would be a 'waste of time' did, in fact, GET APPROVED. Praise God in the heavens above, but Judas Priest and a popsicle stick. What a freakin' joke that whole thing was. And all it took was for them to answer ONE QUESTION - which they did via fax. I've stood on so many mental soapboxes this week that I should be squeaky clean by now with all the soap I've used up.

Now, the next prayer request is that the alternative drug would actually have its intended consequence of eliminating my drowsiness. Maybe by the time next I post, we'll know. 

Until then, if there's anybody else out there in their own version of Medical Scranton, don't lose heart and don't be afraid to advocate for what you need. Your voice matters, even if it seems like it's falling on deaf ears. May the fax be with you.