Making Me Understand is an occasional blog feature where I analyze, in brief or at length, what a particular work of art or artist means to me at this given moment.
When it was time to leave for our drive back north this morning (much later than we’d planned, owing to late night/hangover concerns), I was all set to do the first half of the drive. The way this usually works is, I drive us through Maryland and Delaware, and by the time we’ve crossed the Delaware Memorial Bridge, before we get on the New Jersey Turnpike, it is lunchtime, and we leave the highway and eat lunch at an improbably good Chinese restaurant in the middle of nowhere, which we found exactly a year ago, on our drive home from Thanksgiving, and have been stopping at ever since.
The drive. In my heart of hearts, I really didn’t want to do it today, my half, but J gets so agonizingly achy when he has to do the whole thing (car ergonomics were never considered for the likes of us tall folks), and I didn’t have any medical reason to exempt myself.
I knew I needed a good song to kick off the drive, but I didn’t realize choosing this one would permeate me with such conflicted feelings that I’d cry my way out of my parents’ apartment complex and all through the merge onto the highway.
In my family, I’m the one who doesn’t live close by. I lived close by for quite a while – going to college in state, moving back in with my parents while I went to grad school at same place, being in a front row seat as their parents declined in health and mental faculties and passed away. It was hard, really hard, after four years mostly away from home. And there was the need for my parents to learn to think of me as an adult. And my need to learn to act like one. It was an intense time. But – I think – we managed.
After those two years, I left. And even though one of my brothers never left, and one did for a long time but returned… I didn’t come back.
I’d been wanting to live in New York for a very long time, at least since I’d gotten hooked on it through early Electric Company episodes, where they weren’t exactly making the city look like a verdant paradise. Heyyyy youuuuu guuuyyyyyys!was my destiny. In seventh grade, I saw Rear Window, and that sealed the deal (even though it dealt again in the type of city most normal people would not like to inhabit, wall-to-wall paranoia and your neighbor turning out to be an actual murderer). I had never, and probably have not since, been so sure of anything in my life, as my need to live in New York.
And I live in New York. And I’ve built a life there, with my two hands and J’s two hands and our boys’ four hands and all of the helping hands along the way. I’ve even built a life there as a cancer patient, and my dad acknowledged recently while we talked on the phone that on balance, it was a very good thing for my treatment indeed that I live where I do.
That doesn’t mean it is easy to leave, when we’ve been to visit. I saw a lot of dear, dear people this weekend. We spent a longer time visiting than usual. My parents. Cousins and aunts and uncles and friends on Thanksgiving. My brothers and their spouses and kids and dogs. A day trip to splendid Shenandoah National Park. And to cap it off, last night, an unprecedented gathering of whoever was around, and well enough and not previously committed and, frankly, brave enough, to come out to the shabbiest bar imaginable, which I seem to cleave to as a vestige of the lost Rockville, Maryland of my youth. I truly enjoyed myself. I adored seeing everyone. I drank with abandon. I did something usually unthinkable for me, and ate a diner meal at midnight with J and some friends from junior high.
And then I woke up today and needed this song to get me driving. I didn’t count on how sad it would make me, but it felt like permission to separate from home and go back to my handmade, hard-won life back… home. I couldn’t do that if my parents hadn’t let me “do my thing” all those years ago.
There’s a lesson in this for me, as a child and as a parent. I’m still on the steroids, dropping my dose tomorrow, so being in this enclosed space of the car with the increasingly-bored kids has been a challenge. For this second part of the drive, I decided at some point (or maybe J decided it for me) that I’d need to just tune them out. So I did. I’ve been writing this instead. We’ve still got an hour left – the last 18 miles takes a whole hour on a day like this – but I’m definitely feeling more serene.
Do Your Thing, by The Clean
Do your thing
Do your thing
Always someone to put you down
Always someone to drag you out
Stuck in your head with lies
Stuck on your life
Just do your thing
Do your thing
You’re so PC you’re a hypocrite
You’re just as real as the ideas you feel
Career crawling with no heart
When it removed this old part
Do your thing
Do your thing
Do your thing
You’re not too young
You’re not too old
You’re not too weak
You’re not too bold
Just do your thing
Last night I had friends and family meet me at the oldest bar in Rockville, Maryland. It was grand. As it tends to be when you get together with people who know you from pretty much every stage of your life, from birth to elementary school to junior high to high school to college (all phases were well represented). J was the person there who has known me for the least amount of time. There was a surprisingly good bluesy band playing, and we cut a rug to “Mary Had A Little Lamb,” which J told me he’d played with his band in college. A late-night run to a diner with friends from junior high completed the night and took the edge off – I had four drinks last night, which I think is a personal record, on or off steroids. I don’t feel half bad today, but I haven’t started driving yet.
Earlier yesterday we visited each of my brothers and their families – one on each side of the Potomac – and the kids had such a lovely time playing with their cousins and the dogs and jumping on two different trampolines.
Today we battle the highway to get back home. It may take hours longer than anticipated. I’m carrying with me such a full and happy soul… which may prove even more useful than EZ-Pass.
In the Facebook version of this day, which is one valid version, we went to Shenandoah National Park, claimed our year-long Every Kid In a Park pass (thanks to Young J being a fourth grader this year, when the program was created), and hiked to the end of this trail. A stray Lego person had hitchhiked a ride with us, so we also documented with photos his own parallel adventure.
In the warts and periods and all version I post here – none of the pics of the kids, all of the angst. Or maybe just some of it. After all, given the couple of weeks I have had, it was certainly exhilarating to find myself in a spot where I was able to take a photo like the one above. I was happy to have made it, as I was happy to have made it to a much higher elevation, back in June, after the same surgery trajectory.
But when we got to the rocks, my exhilaration turned pretty quickly to fear. I was suddenly unsure on my feet, of my feet, my polarized sunglasses were making it difficult to see, the backpack I carried was throwing off my balance, and there were muddy patches here and there among the rocks. The boys scrambled across the rocks like little goats. But they are no goats, and there was no guardrail, and within a few short minutes I had sat down on a rock and started freaking out that the boys were going to fall off.
So there you go – nature vérité. Steroids + brain surgery + a rocky peak with inexperienced climbers + knowing they zapped close to where a blood vessel is that supplies the foot? I didn’t stand a chance, really, to have anything approximating a normal time at the summit.
When I was climbing back down as we were leaving, I let myself slide and stumbled and finally collapsed in J’s arms, sobbing – in part, relief that none of us fell off that rocky place, but in larger part, sobbing for what I manage to become in just a couple short weeks of renewed medical drama: strident, dependent, unsure, lacking any confidence. I know I have been here before and come out of it. I know I may be here again. So all there is to do, really, is own it.
To make up for it, we did see a black bear in a tree. From a safe distance, from our car. So thanks, nature, for offering us our first bear sighting in the wild, as recompense for scaring the shit out of me earlier that afternoon. I’ll try to keep the comfort of a nearly-hibernating bear being watched and cheered on (and not shot at) with me now, as I attempt to sleep.
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.
I’ll lead with tomorrow, since today is getting blurry already. I should be asleep already. The few hours that await me, since I’ve had to up my Decadron dose due to swollen optic nerves that never would have been detected were it not for my visit to the retina specialist yesterday to follow up on a condition initially caused by my cancer meds. (The dominos fall in more than one direction. It’s confusing.)
Tomorrow I’ll see Dr P. I haven’t seen her since my scans of last week, which resulted in so much drama. The CT scans are fine, though, so I have that to go on. I have that, and I cling to it, because I also have some kind of chest cold developing with bad cough, a sudden pallor that concerns me, extreme fatigue (most likely thanks to Keppra) and as of earlier this evening, a very slight fever. I usually run pretty cold – around 97 degrees – so for me, 99.1 is possibly cause for more concern than in warmer-blooded specimens. I have a sister in melanoma meds in Northern Ireland, who has suffered greatly from fevers on the same combo therapy I have, so I’m definitely on alert.
Tomorrow I’ll also be dropping off a baby gift for Nurse Practitioner R, who had a baby boy a few weeks ago. When I need to buy baby gifts, I never stray from books. Registry items feel practical, but having been through the process a couple of times, I know how quickly needs change, how intractable newborns can be when it comes to what swaddling methods they adore or reject, etc etc. Books are always the right size. And you can read them to a baby starting in the potted plant stage and then keep on reading them, until they start reading them back to you. I picked out some of our favorites.
And now, since it is November and since at the start of the month, when I felt fresh and new and ten pounds lighter and much less tired, I committed (with a couple of friends on Facebook) to starting a new poem each day of the month (to counter the novels that others attempt to write this month), I am thinking about Nurse Practitioner R, and her roles and how they intersect and how they emphatically don’t. I haven’t written my daily poem yet today (though I’m trying to go easy on myself now that I’m sick again), so I’ll try to ruminate here a bit, with a prose poem.
(Nurse, Practitioner, Mom)
From one day to the next you crossed that line – bump on the inside to human on the outside. The slap of his wet skin against your own, the way he burrowed in and found home. Nurse. Do you use that word to describe the rooting, latching, let-down and release?
Or does the word itself jump you right back into your other self, the white-clad, purposeful, authoritative boots striding hallways to find the next one needing help, picking up the phone extension to find the next weak voice on the line needing your sure tones, your “it’s gonna be okay, hon,” your “we’ve got this.”
Tomorrow, I won’t see you. You’ll be with him. Your colleagues know, and you know, my disease. Now, I think I know something about you. You and the little he, will I think of, adrift on an oxytocin sea, quilt of snuggles and snoozes and bleary trips for coffee. I wish you the best of care. I won’t call you Nurse, I’ll think of you as Mom, until I see you walk the halls again, knowing the way the scale tips, the way you get back one part, but leave another part, of your heart, at home or at daycare.
How do they keep screwing up and how do I cope? That’s what I’d like to know.
This morning started early, as mornings tend to do for me when I’m on steroids. 4 a.m., the hour of 30 year olds. (Except I’m pushing 44.) A couple of looooooong Decadron-fueled emails later, it was 7 a.m. The day dawned suddenly, because I had been hiding under my blanket with my phone so as not to wake J. When I peeled back the covers, presto!
My objective for the morning was to see the retina specialist, Dr. T. I’d seen him at the beginning of October, when things were a lot worse with my vision. I had lots of floaters, random flashes, the works. In fact, my left eye had shown some swelling in the retina, so I’ve been on a regimen of a couple different eye drops all this time. I never thought I’d get good at eye drop placement. Turns out you know you’ve gotten good at it when they make your eyes sting first thing. So for six weeks – actually longer – I’ve been faithfully heeding the rattlesnake-like pill-bottle-shaking sound alert of my meds app (which I have mastered and highly recommend to anyone who may need such a thing, may you never) and putting drops in my eyes seven times a day.
Last Friday, Dr. D (the ophthalmologist) said things were looking okay, but I think he was so freaked out by the fact I was seeing him two days after brain surgery (and that I was so sanguine about that) may have distracted him a bit. He and Dr. T work at a clinic together on Friday afternoons, though, so they were able to have a word about me.
Turns out my retina today looked GREAT. No swelling at all. Of course, in addition to the steroid eye drops, I’m also taking oral steroids, so that may be skewing things. I’m seeing Dr. T again in three weeks.
Something strange he noticed today, though, which he hadn’t the last time, is that my optic nerves seem to be swollen. He was concerned about this, so I had him call Nurse Practitioner A who works with my neurosurgeon, Dr. K. He amazingly got her on the phone and even though he wasn’t able to reach Dr. K right then, it felt so good to know my practitioners talk to each other and give out each others cell phone numbers and genuinely want to figure out what is going on with me. My hunch, which is not yet confirmed, is that the swelling of the optic nerves is a side effect of the gamma knife surgery. I’m hoping that is all it is.
I’m hoping there is nothing more to it, because my dance card is full this week. No more time to schedule extra doctor’s appointments. Tomorrow I’m seeing my therapist, M. Wednesday I see Dr. P. And it’s a short week. And THANKSGIVING – which I remember so fondly from last year as The Day I Could Eat Again.
I’m also hoping nothing further is wrong because when I went to pick up refills of my eye drops, the ones I’ve been using for weeks and need to continue using (albeit in smaller doses), the pharmacy once again was charging me a very high price for two tiny bottles of eye drops. The last time this happened, I spent two hours on the phone with our health insurance, and once hung up sobbing.
So I came back home and got on the phone. Except this time I’m on Decadron. No tears. I was borderline belligerent. The guy on the phone was baffled. And “senior resolution specialist Larry” has not called me back yet. Which means I don’t have my meds. Should I have overpaid $30 for my precious eye drops? If it were merely a question of time versus money (which it so often is, especially in NYC), perhaps I might have been okay with that, and I would have gotten my drops and put them in and had a longer nap. BUT THIS IS NOT THE ISSUE. This is some internal issue with my insurance, the last time around they apparently did a manual override of it, and I guess they expect I will be fine with manual overrides for time immemorial. They are incorrect about that.
I think it’s time to take a step back and realize I’ve actually been out of one of the drops since last Friday, and haven’t gone blind yet. And I still have the other kind. I have 30 minutes before I need to get the kids (and head into dinner prep, HOPEFULLY no homework this short week) and prepare for a solo evening with them so J can play basketball. So I’m not going to call the toll free number to be put on hold for another 30 minutes while they locate Larry, the senior resolution specialist, who has probably been hiding out in the john all afternoon waiting for the day to end, because he suffers from extreme job dissatisfaction, has nightmares about manual overrides in which he actually has to do manual labor to get them to work, and then his wife complains because he can’t seem to peel himself off the armchair after dinner to help out with the baby.
This is not to say I am cultivating even a shred of empathy for Larry in his official function, because… see dogs up there?
The pills are the same. I’m back on Decadron and Keppra and so far I’ve been using my leftover stash from earlier this year. So I know the pills are the same.
What is not the same? Their effect on me. I’m not the loquacious, outgoing Decadron Girl. I think that’s the difference in dosage – at the start of my last round I was on as much as 30 mg a day – and one day I even got 100 mg. This time around, I take 2 mg in the morning and 2 mg in the evening. What that seems to yield is tightness in my chest, a powerfully loud yelling voice when my kids don’t snap to it, and a terror of going to sleep at night, since I know I’ll be wide awake by 5:30 a.m., then totally useless all morning.
So I have to discover new ways of coping, scheduling, avoiding, maneuvering. With any luck, things will go as planned and I’ll be back off the Decadron and the Keppra by December 7. With less luck, more of these things, new meds, more surgery, and a slow slide back into medical limbo.
I have no reason to think things will get bad again. But I watched my wedding video with the kids yesterday, because they wanted to see it, and I couldn’t believe how naïve that bride was. She was expecting that the tremendous luck that brought her to that happy occasion would follow her forever. Perhaps it has, perhaps it has, but now instead of Lady Luck, robed in satin, Mr. Luck who accompanies me now is a bit down at the mouth, foul-mouthed, not exactly bitter, but close to it.
I know – I’m lucky. The disease I have can strike those younger and more vigorous than me down like lightning. I’d love to return to who I was even a week ago – before the most recent scan, when I was all about progress and exerting control and getting things “back.” Maybe it is time at last to acknowledge there is no getting things back. Things can be different, not the same. Young A asked last night for the anti-bad dream spray again, after weeks of not needing it. I asked him why. He said, “The room is shaking again.” I suggested it was just footsteps from upstairs, or his brother in the top bunk. No, he was very clear. The roomshakes.
This is, I think, his way of worrying about me. He’s tuned into me like a radio and when things start going badly, he knows. He’s my canary. He’s my sensor.
He was up again at 5:30 this morning, asking me to find his blankie and claiming he had already looked in “the gap,” the space between his bed and the wall that swallows all of his necessary items when it’s dark. There it was, right in the gap, as I predicted. I couldn’t even be angry at him for waking me, because I’d been awake already. I left the blankie on his pillow while he used the bathroom, then returned to my bed to toss and turn.
I slept from midnight to almost 7 a.m. last night. It was a struggle, though. I didn’t check the clock but I’m pretty sure the last three or four hours I had to keep convincing myself it wasn’t yet time. The night before I’d kept an hour-long vigil in the bathroom with a night light on because I couldn’t sleep. Not a comfy place to sit and not something worth repeating.
My aunt V reminded my mom that I haven’t said anything about the CT scan results. Sorry!! The MRI news kind of eclipsed that. I spoke to Dr P on the phone the night before surgery, and she proclaimed my CT scans “beautiful.” So there’s that, at least.
In other news, until now I have been taking my combo therapy of dabrafenib and trametinib every other day. No longer. Now I need to toe the line and be a good cancer patient who takes her meds every day. This is an inconvenience, since it requires careful timing of when I eat and don’t – basically, a three-hour window of not eating (or drinking anything but water) twice a day. That sounds easy in theory, but it actually isn’t. You know what sounds even harder than that, though? Being dead. So, onwards to new meds regimen, and I will try to keep my complaints to a minimum, because There But For the Grace of Big Pharma Go I.
And now to complain about Decadron (steroid) and Keppra (anti-seizure med), which I have done at such length here before. I’m back on both. Hopefully short-term. But this time I’m having none of the fun I had on Decadron last time. It’s not making me gregarious. It’s making me cranky and mean. I instantly have next to no tolerance for my kids, so it’s a really good thing Mom has been here this week. Young A came in this morning to show me a Lego car he’d built, and I hijacked it and held him close and told him I’d have to be back on the medicine for a while that makes me cranky, but that he should know that I love him so much. He seemed to understand. How that will express itself remains to be seen. Maybe he’ll get even more hyper than he was before leaving for school today. Hard to say. I know they know I love them. But this medication makes it truly hard to control my rage when it so much as pokes its head out of the hole.
So I’m back in my bedroom/cave, pissed off at my situation, annoyed that in what seems like minutes since I’ve been back on steroids I have gained back four pounds already, horrified by what continues happening in the world – especially the non-picture-postcard parts of it – and trying to cope with being simultaneously sleepy and wired and aggressive and apathetic. It’s quite a cocktail. Did I mention they seem to have used extra lidocaine on my head when they were affixing the frame to it the other day? My head feels like a huge balloon on a string, tender to the touch, swollen, unsightly, addled.
All of this should contribute to my being very questionable company when J and I go out for dinner tomorrow to celebrate eleven years of married bliss. J, I will try to keep my mouth shut, and to smile. In case I screw everything up and start a fight or start crying or something, know that I love you. You are my steadfast life force and I can’t imagine dealing with any of this without your constant strength by me.
And now to face the day. I have to visit my ophthalmologist, Dr D. It’s been a while, and my eye concerns seem to be something I have always had. They were better for a while, now things are worse. And he doesn’t know about the surgery. The extremely long wait in his office means my eating and drinking moratorium should pass quickly, but I fear he will want to dilate my pupils, adding hours on to the affair. Nothing to do but roll with it. I hope I can.
Up like a bolt at 4:30 today when my alarm rang. Despite going to sleep at 11:30 (because I was waiting to see Mom when she arrived), I felt pretty rested. Good thing, since I took 2 mg of Decadron last night. I’m experimenting this time around with taking it earlier in the evening, around 7 pm, to see if that helps with the sleeplessness. I’m experienced now.
Waiting for the car we called, I looked out and saw things I would not have noticed if I were not up at that hour. A thin rib of golden leaves still clinging to the nearly-nude ginkgo tree out front. Our neighbor waved as he passed, walking his fluffy, adorable Samoyed, Onslow, way before sunrise (mental note: another reason not to get a dog).
This early time of day plus hospital still calls to mind more Labor & Delivery than cancer surgery. Though I’ve been up this early for surgery once before, of course – just this past June. I enjoyed my ride in the gamma knife machine that time perhaps too much, so now I’m going again. Maybe I grasped some titanium ring and no one told me that that meant another ride.
Even though I was going into this knowing the entire process, I still didn’t quite attain the degree of performative spectacle that came naturally to one of my sisters in melanoma, Kate Boone, who has cheekily bedecked her titanium frame with garlands, sparkly things, and lights. I didn’t really have much time to plan, this time around. I did, however, make the same tired joke the neurosurgeon and the nurses probably hear all the time as they are affixing frames to people’s skulls, tightly: “So… is that a Phillips head or a flat head?” (One of the nurses snorted. It was enough for me.) After that, it was no joke. It really actually hurts when you are jabbed with two needles in the forehead and two on the back of your head, and then screws get tightened and tightened beyond belief and you can feel some blood squirting out as they affix your titanium crown. Here’s me today (no blood!):
There were a couple of innovations today. The thing under my nose – I definitely didn’t remember that from last time, and neither did J. The green cloth around me – apparently to give me some privacy. Totally not effective, and who cares if anyone stares? We are in a hospital and I have a titanium frame bolted to my skull. What of it, good sir?
Things went much more quickly when I stated my intention to not have any sedation today. I did take the Ativan that melted under my tongue, but I didn’t get anything through the IV except contrast during the MRI before surgery. My refusal of sedation helped me jump the queue to first (there were three in line for gamma knife today). I almost leapt from the gurney when I heard I was first.
This reminded me of showing up to labor & delivery when Young J was about to be born. I had quietly and painlessly dilated to 8 cm and was told by my OB to tell the nurse on duty I’d been having “cramps.” I had not been having cramps. But being that far along, with fake “cramps,” meant I got in before everyone there to be induced, and within about three and a half hours, I had a baby on the outside. I don’t know if living in New York City has made me extra attuned to opportunities to jump the queue, but it can’t be discounted…
Today, we arrived at the hospital at 5:30 a.m., I registered with the lovely British-accented trans person who works registering people at 5 a.m. (I remembered them from last time). And by 9 a.m. we were on the outside of the hospital, me with a gauze-wrapped head like I’d been in a bar fight, stepping into a cab. No baby to show for it, but hopefully, we killed something bad on the inside.