Today began around 5:30 a.m. for me. Thanks, Decadron. Not as bad as I’d been fearing. And because I’d already been up for a couple of hours by the time the kids got up, when J suggested I make breakfast, I didn’t just groan and roll over in bed. I did. I made us eggs and coffee, and Young J made breakfast for him and Young A. We all ate together harmoniously and we were done by 7:40. It was a hot lunch day for the kids, so I took a shower and took them to school. Today, the second day of my Campaign for Greater Kid Civility, meant I warned them a block from school that I expected them to say goodbye to me and good morning to the teachers who greet them at the door – not just run like maniacs leaving me to wonder why I even bother walking them anymore (oh yes – Brooklyn drivers – that’s why). The CGKC has a penalty attached for non-compliance – no snack after school. I mean no GOOD snack, but they have seemed to understand. So, two days in a row with good compliance on the CGKC.

You can see how cuckoo a little Decadron makes me. Did I mention that when I was about to leave with the kids for school, I got up from sitting and almost blacked out? No clue what that was about. Maybe a touch of low blood pressure? Anyhow, by the time I dropped the kids off I felt better, so it was time to: a) hike over to the drugstore to buy a card for Nurse Practitioner R’s new baby, b) get on the rush hour subway, c) get to my appointment with Dr P. Perhaps it was thanks to the impending holiday that I got a seat on the train, wrote the card, and rested before the transfer at Union Square and the subsequent hike up steep stairs at 33rd St. I got to the top and moved slowly, but I seemed to be fine and not in danger of passing out.

At the cancer center, Q the greeter greeted me with his usual warmth. He hadn’t seen me in a while. He tried to usher me back to pay my copay, which seems to be a new hoop they want you to jump through before letting you see your doctor. I argued with the accounts person that since I don’t pay a copay if I only see a nurse practitioner, I wanted to wait until after my appointment to pay. I’m very persuasive on Decadron. We just drove over a bridge that’s for sale and let me tell you about this deal.

So I snuck out and went upstairs and it was a big lovefest. B the phlebotomist greeted me and complained about his friends who are coming to town and insisting they go to watch the parade. B is from the Gambia, but already a true New Yorker in his insistence that no New Yorker would ever dream of going to watch the parade. I mentioned the most recent headline I’d seen about the Gambia – female genital mutilation having been outlawed there – and it was perhaps not something he wanted to talk about. I think I heard him say it was a good thing they were stopping it. My boundaries aren’t great on Decadron. Boy, I make a lot of excuses for myself with this one drug…

My vitals were fine, and Dr P came in and just parked herself to talk to me while waiting for my labs to come back. I saw a photo of Nurse Practitioner R’s adorable baby, and photos of a few of the literally dozens of apple and pumpkin pies Dr P makes for Thanksgiving. She is a maniac. And I don’t even think she’s on Decadron. She also pulled an all-nighter working on her marketing project for her MBA coursework, with her invention for people who use pens all the time like she does – an iPen. (I didn’t have the heart to tell her the pen PC and similar have been around for ages…)

It was more of a social call than a medical visit. Dr P finally saw my bloodwork results, called it good (it has been a couple weeks that I have been taking my targeted therapy every day rather than every other, so checking my liver numbers was key). I was free to go. I paid my bill downstairs, headed back to Brooklyn, desperate for a nap but knowing I had to finish what I started on Monday, as far as getting the insurance company to fix the pricing on my eye drops (which I still didn’t have).

A friend on Facebook said I should treat the fight against the insurance company like a game of chess. I told her, I suck at chess. But with Decadron all things are possible. I logged on to my insurance on my laptop, confirming for the umpteenth time that no, we did not have any further deductible to meet. We’re all good for the year. The year only began in August, because that’s when our plan resets. When you have cancer, you meet your deductible, even a high one, right quick.

If I’m going to be fair about this, and I should be, I will say that beyond this unbelievably stupid episode I’m going to narrate, our insurance has been pretty amazing. I went from having a dodgy MRI last Monday to getting approved for gamma knife surgery less than 48 hours later. No one called into question my need to have it. I know we are lucky to have insurance at all, and to have so little need to engage with insurance on a regular basis.

Perhaps, though, that makes all the more frustrating the fact that two drugs I’m hopefully not going to need for much longer – two types of eye drops treating my side effects from the targeted therapy – were so difficult to get refilled. It’s not that I couldn’t get the refills. I could have. It’s just I have this thing about something costing one price six weeks ago and suddenly costing twice that for no particular reason. And I have this thing about being fucking lied to when I inquire about why that is.

It seems like the very first line of defense in an insurance company worker’s manual is, “You haven’t met your deductible yet.” And yet – they give us access to their website. We can see that we have met our deductible. Why would they even bother starting with that? There must be a statistical formula that tells them that x% of complaints just go away if someone is told their deductible isn’t yet met.

The next tactic: HOLD. ENDLESS, ENDLESS HOLD. Smooth jazz – just the same eight bars or so in an endless loop punctuated by, “We appreciate your patience, please continue to hold,” but repeated so often, too often, enough to make you crazy. And you might already be crazy. So you hold the phone in your lap, on speaker, and try to surf to more pleasant climes on your laptop, but nothing – NOTHING – can help you forget what your purpose is in those long minutes. Your purpose is to feel as insignificant as possible. You’re not even worth actual music on hold – just the same eight bars of smooth jazz and the nagging thank yous for your continued patience (you stupid chump).

What actually happens on the other end while you are on endless hold? Are they in turn being placed on endless hold by an entity more powerful than they are? Maybe it’s a chain, an infinite clusterfuck of endless hold. And Obama sits at the top of it, on hold with God. No smooth jazz there, maybe. (Nope, not a commentary on healthcare politics, because we don’t have a horse in that race.) (Maybe a commentary on God putting people on endless hold, but I’d need some more time to work that out, and maybe a good talk with a rabbi.)

Since the specific issue I was focused on this week was pricing of prescription drugs, I had to talk to the people who my insurance company contracts with to get prescription drugs. But it’s not clear exactly who they work for. Oddly enough, just this morning, I had a perfectly seamless, quick and effective interaction with the portion of this company that sends me my oncology drugs. They mail them to my house in Styrofoam coolers that thus far always have me thinking, even for just one whimsical moment, that someone has finally gone and sent me some OMAHA STEAKS. (And the weird thing is, I do not WANT Omaha Steaks, we only eat local grass-fed beef at home, so I don’t know why my misconception persists.) So on my walk up Flatbush Avenue to buy a greeting card this morning, I phoned up, talked to a perfectly nice and helpful guy, told him sheepishly that I suddenly find myself with only a four day supply of Tafinlar remaining, and presto! Getting it delivered to my parents’ house on Friday! Copay of ten bucks!

So it can be easy. But somehow, when it comes to dispensing eye drops at a reasonable price, this very same company becomes very weasel-like indeed. After clearing the hurdle of the deductible bullshit, I was told on Monday that Larry the senior resolution specialist was on the case. I even went to the trouble of imagining his poor home life. I needn’t have bothered. There was no Larry, there never was. What “Larry” apparently did for me was contact the liaison between the prescription company and my insurance company, and blow a raspberry. As of today, not only had the cost of the eye drops not gone down – it had in fact gone up. UP. Now I was being charged $45 per bottle. These are tiny bottles, too – see Cuervo above (for scale, for scale). Oopsie! Turns out the entire interaction, which I had given the requisite 48 hours to take place, had been useless.

Today I didn’t hear the agent’s name I started out with. But as the call proceeded into its 45th minute, and lunchtime approached, at one point I heard myself bellowing for a manager. (Meanwhile, I took advantage of endless hold to beg J to go get us some lunch. He did.)

After some more endless hold, I got the next tactic in the playbook: The Manager. This guy, Steve, sounded as if he’d just been woken not from a nap, but from an entire winter’s hibernation. He spoke slowly, thickly, mouth pasted shut from months of being incommunicado. I somehow managed to glean that he was planning to put me on endless hold again, in order to fill out ANOTHER contact request with the prescription company, this time, marked URGENT. URGENT did not, of course, mean anything was going to happen before Thanksgiving, I was given to understand.

I think this is where I decided, and informed Steve loudly, that I would be taking my complaint to Twitter. I’d seen friends do it before, mostly to airlines. I figured it might be a way to get things worked out before Turkey Day descended and found us out of state and me still without my eye drops.

Then, I went to the public library. I had a appointment there this afternoon, to sign up for my IDNYC, which has been all the rage. It’s a city photo ID that gets you free membership at a number of cultural institutions around the city. (It also happens to be a way that undocumented immigrants can have a photo ID, which is good, because that then enables them to open bank accounts.) I won’t go into the bureaucratic nightmare I encountered in there, except to note that I was required to bare my neck for the photo and keep a “neutral expression,” and that I overheard the two Dominican workers in the office talking shit in Spanish about their other colleague (who was asleep in her chair when I arrived) and how little she was doing to chase away the riff-raff (which apparently is a big part of this shitty job), and I waited until I was done and said goodbye to one of them in Spanish and warned them you never know who’s listening, which netted me a frozen smile. (Thanks again, Decadron!)

When I came out of the library, I had a text from J saying the insurance company had called, I had a voice mail from them, and a reply on Twitter. I sat on the plaza in front of the library and spoke to the person the insurance company offered up for their sins, someone named Denise.

I had someone to yell at! And she was quiet while I yelled! So quiet I had to sometimes make sure she was still there, so I could keep on yelling. Good thing I was outdoors. When I had yelled myself out, I heard Denise apologize.

And this is where the whole situation began to sort of turn on me. Because Denise had personally done nothing wrong (unless it was that she really wanted to go to, say, culinary school, and had wound up in this thankless job instead). It seemed unfair to me that her role included apologizing. I didn’t want or expect that from her. Her bosses and her bosses’ bosses should have apologized! But here we were, the waning hours before the Thanksgiving holiday descended, and Denise was the last person standing. She promised to make contact with the prescription people and get back to me.

That left me one last-ditch thing to do. Before calling Denise, I had called up my ophthalmologist, Dr D. He was still in the office. I was actually looking for him to tell me that since I’m on oral steroids which are, ahem, quite powerful, that I didn’t really need to worry about the drops for a few days. Instead, he invited me to come to the office and raid his samples.

So straight from the library I hopped on the subway and headed over there. And for the first time, I didn’t have to wait at all, because I wasn’t there on an official visit. He came out, thrust six unfamiliar boxes in my hands, with confusing instructions for each. (“Okay, this is the one you usually use four times a day, but this you’ll use only ONCE. These you use four times, and these… well, they’re expired but I’m giving them to you anyway. They don’t send me good samples anymore…”) Yeah, I wasn’t sure either. But it felt good to have a Plan B, even if it was a little risky. Dr D, you are a mensch.

I headed back in the direction of home, but stopped at the cafe, sucked down a cappuccino (still decaf only, the Decadron is enough for me) and opened my laptop which I’d been toting all around and started in on the expanded version of my long-suffering collapsed lung essay, which seems poised to be the opening salvo of maybe a memoir now. Major logorrhea. Then someone I knew stopped by and I talked her ear off.

Then I went home and J had the kids and we needed to start reckoning with the idea of preparing for our drive. No packing had commenced. J worked on getting an early dinner ready so we’d be ready to hit the road as soon as the traffic let up. (Except weirdly, there had not seemed to be any traffic all day.)

I hadn’t heard back from Denise. It was 4:45 p.m. and I assumed she, like most, would be knocking off early. I called her number and left a slightly bitter voice mail. She called back about 20 minutes later and explained she was still on the job and that as expected, a lot of the managers concerned were gone already, but she was still hoping to find someone to talk to. I thanked her profusely for keeping at it.

Finally, at 6 p.m., as I was starting to pack up for the trip, SHE CALLED. She’d managed to get someone who could help and they had called my local pharmacy and the drops had been repriced and I’d pay a $10 copay for each. I thanked her again and again, but (trust but verify) then called the pharmacy, who said they had just gotten the call and that I’d be able to get the drops in 15 minutes.

I didn’t actually go for about half an hour. I was all shaky and nervous and stressed, hoping against hope this was no dream, not least because… what a shitty, banal dream that would have made!

I went and first I grabbed a York peppermint pattie that I’d purchase to celebrate my win, if in fact it was a win. It seemed kind of squashed but I didn’t care. I went to the counter, got my drops (and another refill just for kicks) and the salesperson looked at the peppermint pattie and said, “Really? You actually want to buy this? It’s all flat!” She was right. I would have been eating the wrapper. I didn’t buy it. But I told her about my saga and she congratulated me and I went home and poured myself a shot of tequila. Sometimes you just gotta.

But I can’t end on this triumphant note. No. At some point during my back and forth with Denise, I was reminded of something from maybe the late 80s/early 90s. There was one of those chain restaurants – Bennigan’s, I think – that started offering a 15 minute express lunch deal. You ordered and they started a timer at your table and you were supposed to have your lunch before the timer rang, or it was free. I went once with my mom, and the timer rang and still no lunch. When lunch came (perhaps two minutes late), Mom said, “So I guess lunch is free?” And the waiter, beleaguered into honesty, said, “Really?” We inquired further and it turned out that if lunch was late, HE had to pay for it. It would come out of his check. When it wasn’t even his fault, it was probably the kitchen! Naturally we did not demand a free lunch, knowing that. It made us sad.

And likewise, today, Denise made me sad. Not because of anything she did – on the contrary, she made me very happy. I was a satisfied customer by the end. But… but… the fact of Denise made me sad. That she had to be on the front lines of this completely mismanaged merger of two companies whose relationship is dysfunctional to the extreme. That she had to be out there bearing that standard. That I chose to take a fight with a regional insurer to Twitter, which it turns out is quite different than raging against Delta or United – it feels smaller, maybe a tiny bit meaner. And that she had to sit there and hear me rage and just be silent, and not tell me to STFU because I’m clearly on mania-inducing steroids (as the rest of the world should probably tell me).

I placed an extra call to Denise as I walked home from the drugstore, just to say thanks and to wish her a happy holiday. I hope I did not screw the holiday up for her. And I thank her for saving mine for me.

But the insurance company and the prescription company, of course, with their absentee fat cats? Let them go suck rotten eggs.