I’m too worn out to pack any more tonight, but I did a good amount of it already. And the boys packed their own clothes today (with supervision, otherwise they’d have brought 800 t-shirts and no underwear). We’re getting more streamlined. No diapers needed. No sketchy rent-a-crib left propped up at the door of our rental. It all gets easier.

It was a weird week. I had been planning to spend all of it with the boys, but Mom showed up unannounced for a visit late Monday night. I’d had a trying afternoon with the kids – including being chided for bad language by Young J – so I was glad to see her. She took them out on very long outings, two days in a row. We all went to the movies one day. Of course we had our usual friction, but the end result was, I was so relieved. I slept. I rested. I stayed away from the kids.

The boys have been very difficult lately. Something about being between things, not-camp and not-school but also not yet vacation. They have forgotten that they love each other. Or their love has turned into something impossible and aggressive. Maybe testosterone surges. Who knows? I’m hoping we’ll interrupt all that tomorrow, though. The car is out front and starting to fill up with the week’s  essentials that still seem to fill up the car, even without a pack n play or a bouncy seat to tote along.

I remember two years ago arriving at the beach, stepping into the water, and being overcome with emotional gratitude that I had made it there. That was August 2013, and I’d been through surgery, radiation, and then a nasty radiation burn on my back, that oozed and kept reopening and made life impossible for a while.

I remember that moment of gratitude and that it involved being grateful to God. And I marvel at this now, because I have not felt that way in almost a year. Grateful, yes, obviously. It (life, gratitude) isn’t something I can take for granted these days. I’m curious how things will go tomorrow, when I get reacquainted with the watery world, for what it turns out is the first time this summer. We’ve starved ourselves of beach all summer, somehow, even when we’re in easy reach of good ones. I’m greedy for sand, water, waves, the calming effect of low tide that makes you want to speak in hushed tones, the thrill and mild panic of the tide coming back in again when you aren’t ready.

Yeah, yeah, yeah. It won’t be all morose contemplation. Young A (whose half birthday will be commemorated this week with a cake) discovered The Beach Boys at camp this summer. I think they should be our soundtrack for the drive.

Yesterday I had a doctor double-header. First, I saw my shrink, who needed to coach me on how to respond to the chaos the kids have been causing lately. (Formerly best buddies, they taunt each other and hit/kick each other seemingly all day long.) We now have a plan of action, but need to put it into practice. And even when we do, an extinction burst awaits us before triumph. Sounds really great.

Next, I dashed down to Dr P’s office for a checkup. I think it’d been three weeks since I stopped taking dabrafenib. I wasn’t missing it. But, with my eye on the mend and my antibiotics finished, it is time to take up the fight once again. I’ll resume my doses of dabrafenib, but only every other day.  However, a new drug will join it: Mekinist (aka trametinib). It’s another inhibitor drug that is typically used in combination with dabrafenib. Because the need to start my treatment was so urgent back in April, they started me on just the one drug. Now, I’ll get the combo.

The hope is that the combo will mitigate the side effects compared to taking a single drug. I hope so, because the list of side effects of the combo pack are also not too appetizing. Still, having had an ocular side effect, I’d be more than happy to stick with “chicken skin” – and even my thickened footsoles – if I could avoid the others.

Last night I was feeling horrible after dinner. Really bad. I went for a walk, which helped, but when I came back my stomach was tied up in knots. The freezer had just started making a terrible racket and that was stressing me out too. I got in bed, put a heating pad on my belly (in an unpleasant reminder of my sick days last November), and J made me chamomile tea. After about ten minutes, I dashed to the bathroom and my dinner came up. It was such a relief. I’m not sure why that happened, really – I haven’t actually got the new drug and hadn’t even resumed taking dabrafenib yet.

I had, however, been for the umpteenth time perusing the list of side effects for levetiracetam (aka Keppra), the anti-seizure med I’ve been on since April. My next opportunity to reduce the dosage – or even stop taking it entirely – will be after my next MRI in mid-September.

While the dosage was recently reduced, I think it continues to affect me. My fatigue, inability to focus on something for a sustained period of time, even the stubborn refusal of my body to shed even a pound of its fat suit – all may he attributable to this pill. I’ve read horror stories about it on Internet forums for people with epilepsy.

The weirdest side effect I read in the long, long list was “depersonalization.” I had to look that one up. It’s an “anomaly of self-awareness.” It has to do with feeling external to oneself, to feeling like an outside observer. This fascinates me, because I’ve felt that way, to some degree, as long as I can remember, and certainly before Keppra and I got acquainted. It isn’t a constant feature of my identity, but it certainly sounds familiar. I’m having a hard time understanding how it could be bad to see oneself from the outside, particularly at a time like this, when being fully inside can be such a chore.

How is it bad?

I was walking to the eye doctor today (still being treated for iritis – no longer hurts but still don’t have great vision in that eye) and got the most ridiculous, fleeting thought:

What if all of this was fake? What if the initial results of my biopsy were swapped with someone else’s by mistake? What if everything from that point on has been a cover up? The drugs they gave me were real, not placebos – at least, not the ones that made me so sick in November.

You do what you have to do with silly thoughts like these – acknowledge them and move on. Unless you are a conspiracy theorist and have a strong feeling you’ve been turned into an unwitting tool of Big Pharma, that is.

It made me think of Capricorn One, a movie I saw when I was way too young to worry about authenticity or truth.

I’ll just leave you to ponder how weird my brain is, that I can suddenly have a moment where I wonder if all of this was fake.

Then I trip up in my speech, like today when I said words like “prefix” and “progress” before getting to the word I really wanted – “project.” Am I just tired? Do I need caffeine? Or is this the new normal after gamma knife surgery? Stay tuned.

I got a call from the urgent care clinic I went to yesterday, where I was told my chest x-ray showed I had pneumonia. The radiologist read my x-ray today, and it turns out I don’t have pneumonia.

It reminds me of when I was a kid and I’d go to a session at the ice rink. The default direction was counterclockwise. About halfway through, someone would come on the PA and say, “ALL STOP SKATING. ALL STOP SKATING. REVERSE DIRECTION.”

That was much easier to do as a kid. I spent most of today reorienting myself to being sick with pneumonia. And now I don’t need those skills/thoughts/patterns. It’s a relief. But I am still sick. No skating at all for now.

The kids spent Saturday night at J’s parents’ house. We try to get them out there at least once a month. Even if we don’t have any spectacular plans, getting to spend kid-free time at home is always a bonus. I’ve been feeling pretty lousy for over a week now – in addition to the eye problem, I’ve had a cough I have never quite kicked since we came back from Colorado at the end of June. It’s been better and worse, and now much worse. Since I’ve had pneumonia too many times to keep count now, I should be more careful. My CT scan in mid-July didn’t show anything on my lungs, but that’s two weeks ago already. And if I’ve learned anything in the past year, it’s how quickly things can go south.

So J went to drop off the kids. When he got back I’d barely gotten out of bed. I was ambivalent about making plans to do anything. I knew this looked like depression. To me it just felt like exhaustion. J was keen to check out the new Whitney Museum downtown. That just made me want to bury myself deeper under the covers, but I decided to try to be enthusiastic, for his sake. I got out of bed, took a shower, put on some clothes a cut above sackcloth. Added my new bead necklace made for me at camp by Young A. (He’s very proud of it. Today he came home with a matching one he’d made for himself.)

We took the train into town, had lunch and then ice cream, then walked west towards the Whitney’s new location. There are certain quadrants of the city that seem alien to me now that I have a family. The Meatpacking District among them. That was a place of my early New York days, my single days, my clubbing days (I’ve only ever been to about four clubs, don’t get me wrong). We picked our way west over the cobblestones, and I tried not to turn my ankle. It reminded me of a mug or novelty sign I’ve seen for sale, that reads, “REMEMBER: If anyone asks, we are a NORMAL FAMILY.” Here we were, J and I, out on the town in the daytime, without kids, trying to reinhabit old habits, like museum-going without feeling like we had guns to our heads as we walked through the galleries (as we felt last weekend when we took the kids to the Met).

The new Whitney as destination on a Saturday afternoon in fine weather was just as impossible as you might imagine. J and I used our respective ID cards to see which one would give us the greatest perk: Mine, staff ID from my very, very part-time academic job, or his, employee ID from a major cultural institution? His won, hands down, because not only did it afford us free entry – it also let us cut the super long line.

I felt claustrophobic as soon as we got inside. The giant elevators were so packed you couldn’t choose a floor – everyone was taken to the top and expected to start there. The crowds in each gallery were three thick in places, and the crowd’s slavish cell phone documentation of the works of art and their explanatory text was a bit much. My bad eye was giving me trouble – I have to put drops in it three times a day to keep it dilated. That doesn’t make for good art viewing.

Finally I found a small, dark gallery where films were being projected. I settled in and watched this one, AT LAND, by Maya Deren, filmed in 1944:

Perhaps I was in a particularly receptive mood, but I instantly identified with every frame of the film. Maya Deren’s chaotic beachy hair. Her struggle to climb to the top of some driftwood, only to have it turn into the tabletop of a long table at which fashionable men and women sat and smoked and ignored her. They all knew what to do. She has no clue what to do. She claws her way across the table.

“Mon semblable, mon frère!” I felt like shouting. It is good to recognize yourself in art. But also good to keep yourself from identifying too closely with it.

I was done looking at art not long after that, and was feeling exhausted, so I found benches wherever I could while J poked around some more. I think I had forgotten how much he enjoys art museums. It felt important to rediscover this facet of him.

We left the museum and sat shaded from the setting sun by an angular corner of the building. I felt lousy. J fetched me a ginger ale and I revived enough to have an opinion about where we might want to eat dinner. We selected an Italian place that had good reviews and seemed reasonable. Despite crowds outside, there was a table for us right away. We could have selected indoors or out. I chose indoors, and they guided us to the most chaotic table in the place, right at the exit from the bustling kitchen.

Despite the earlyish hour, there was absolute pandemonium. The Italian owners yelled at each other and the other staff from across the room and you could almost not hear them above the roar. I was so happy in that chaos, though. The staff also included Spanish speakers and maybe a couple of Brazilians, but they all spoke to each other in Italian. It reminded me that years ago, upon moving to New York, I’d been sitting in a diner and feeling impressed that the Greek owner sat at the counter reading a Greek newspaper while conversing with his staff in fluent Spanish. I love the linguistic microclimates of New York restaurants, where a lingua franca emerges that usually isn’t English.

After dinner we drifted over to the Hudson River Park, a place where we’d spent lots of time pre-kids. My time running and biking up and down the paths there came flooding back to me. I felt a bit morose and old, which isn’t an unfamiliar feeling these days. But also, happy to be there with J, retracing our footsteps.

We sat on a bench as the light began to wane and watched a small sailboat docked at a pier. We imagined Young J as an adult, with his own small boat. We sat in companionable silence. And finally, after what has felt like months and months of silence on the topic, I started to tell J what this feels like. How it feels to know that at any moment, things could just go to pieces again. How it feels not to be able to count on being around as long as I’d like to. I mentioned something I’d talked about with my shrink, that I’d considered writing an ethical will, but then decided against it, because it felt too much like tempting fate. I haven’t decided against it, really. (You might argue this blog forms part of an ethical will, anyway, but it would need to be extracted from piles of chaff.)

We got up and kept walking south, keeping a potential destination in mind but also willing to discard it from our plans. Eventually, we made it there: an outdoor showing of STOP MAKING SENSE on the waterfront by the World Financial Center. I hadn’t spent much time there since the Winter Garden reopened after its destruction on 9/11. It was strange to be there again. It was stranger to be there watching that particular movie. When we arrived, the band was playing “Swamp,” never one of my faves. But things got better from there, and we started dancing, and my headache lifted and it was suddenly the best night ever. And Sunday morning I slept until 11 a.m. without even trying. Legendary.

Today I found out I’ve got pneumonia. And so another journey begins…

This series of occasional posts, Making Me Understand, is where I explore some corner of music, art or literature which I’ve always loved but which seems particularly relevant to me now. I’m not trying to do any scholarly/critical writing here. These are, like everything else on the blog, primarily personal essays. Prior posts in this series are here and here.

Back in late April/early May, things were at their most unstable and uncertain for me, except for the daily regimen of cancer drug, anti-seizure medication, and oh yeah, steroids.

Things suddenly seemed precarious and urgent. The steroids transformed me into a hyper-gregarious stranger to myself. I cooked up new schemes every hour, practically, and then even went so far as to make phone calls and send emails to see if I could make some of these schemes fly. I’m relieved most of them didn’t, because they were half-baked, or even missing key ingredients.

Some of them (e.g., I am totally embarrassed to say, trying to come up with a way our whole family would suddenly be able to afford or somehow crowdfund a trip to South Africa next February to join one of our favorite singer-songwriters on safari there) did not succeed. Some are still in progress, slowed by the end of my steroid doses two months ago and the persistent feeling that my Good Thing has been taken away from me. (Honestly, I don’t miss the sleepless nights. But I do miss the heretofore unknown Type A personality I unearthed via the pharmaceuticals.)

In the immediate aftermath of my most recent and scary-as-shit diagnosis, suddenly, things started getting really good. There were amazing conversations in the street happening every single day (actually, given how manic I was on steroids, they were probably more monologues than conversations). There were plans to make for a trip to Colorado.

And then there were the exciting things that would have happened whether or not I’d come down with my third case of cancer. 2015 has been and continues to be The Year All My Favorite Bands Reformed (and/or Toured). Just two days after my gamma knife surgery in June, I saw Ride perform – a band I adored in college, and had not heard live since 1991.

At the end of April, I was newly unemployed, and had a new laptop which I cozied up to for hours, lying in bed, merely resting because I couldn’t sleep because of the steroids. I blogged a lot. I was on Facebook a lot. And I noticed the Mekons‘ Facebook page contained some chatter about an upcoming tour, and a special event in Brooklyn. Given how far away the band members live from one another, making regular touring impossible, this – THIS was news not to be ignored.

I first became aware of The Mekons while sitting in the car at the Exxon station near the house where I grew up. My mom was probably buying gas – I didn’t drive yet. She wasn’t in the car at that particular moment, though, so I switched the radio to the (late, lamented) progressive station, WHFS, and they were playing “Club Mekon,” a single from the band’s recent release, The Mekons Rock n’ Roll.  Based on its release date, I was in college already.

I can’t replay the scene in my head where I pluck the CD out of the bin, pay for it and take it back to my dorm room, unwrapping it with trembling hands in anticipation of something life-changing – that moment is long gone from my memory, even before my brain was multiply zapped with gamma rays.

But I do remember sitting in the car, at the Cabin John Exxon, hearing this song, enjoying the violin in the mix, and knowing I’d need to know a lot more about this band. Sally Timms’ vocals on that song were completely authoritative, on subjects as yet alien to me. It was my moment of First Contact, if you will. And to this day, the Mekons songs on which Sally sings form a perfect shower repertoire, showcasing my mezzo nicely (I think) in the tiled stall.

I was just 17 (or maybe 18 by that point), and plenty of things were still a mystery to me. The Mekons, with their full spectrum sound that spanned from punk to reggae to folk (always more interestingly than The Police, who lacked folk credentials), were going to teach me a lot. They gave off a whiff of erudition, too – the liner notes to their album Honky Tonkin’ include a list of sources for each track, ranging from Moby Dick to a memoir of Wittgenstein to a cookbook called Easy Indian Vegetarian Cookery. Maybe the Mekons were my invisible college roommates (although they were older and wiser and more British). I learned about miner’s strikes, the Trimdon Grange explosion, and Hank Williams.

Then there were all the live shows – the dates of which I can’t recall, because proximity to The Mekons, even if one is mostly sober, induces a drunken amnesia. Sort of like what Dr. Williams had in mind here:

The Dance

William Carlos Williams

In Brueghel’s great picture, The Kermess,
the dancers go round, they go round and
around, the squeal and the blare and the
tweedle of bagpipes, a bugle and fiddles
tipping their bellies (round as the thick-
sided glasses whose wash they impound)
their hips and their bellies off balance
to turn them. Kicking and rolling
about the Fair Grounds, swinging their butts, those
shanks must be sound to bear up under such
rollicking measures, prance as they dance
in Brueghel’s great picture, The Kermess.

I know I saw The Mekons at the late, great 9:30 Club in DC, on a very hot night in the dead of summer, in the early to mid 90s. I remember standing near Jon Langford after the show and wow, did he smell awful. I also remember the audience being invited up on the tiny stage to dance, and doing that and then hitting my head hard on a low-hanging speaker on my way back down. Maybe I’m conflating all my memories of all Mekons shows into one right now, but the most stunning and perplexing moment of all was towards the end of that show, when two Salvadoran (I think) guys came in late, both wearing cowboy hats, and wondered aloud in Spanish whether the band had already played “Wild and Blue.” (Maybe the most embarrassing memory I have about leaving a lovelorn answering machine message also involves the song “Wild and Blue.” Or maybe not. Why don’t we say my brain surgery has made me an unreliable narrator, when it comes to anything embarrassing in my past.)

The Mekons stand to me as a shining example of a functional, productive collective, in a world where so many collectives either fall apart or become severely dysfunctional. They have prevailed where other bands have not, and it seems to me that despite their onstage squabbling, they genuinely enjoy creating together. They demonstrate that creative bonds can transcend geographic separation, and that growing older does not have to equal decay. These are all things that matter to me a lot, and never more than right now. This video, a promo for their fantastic album, NATURAL, embodies some of what I’m speaking to.

A few years ago, The Mekons played in Brooklyn. It was Yom Kippur eve. I was furious with them, because there was no way for me to be at that show. I knew they’d make it up to me eventually. This year, right at my moment of greatest need, they did. As I lay in bed, exhausted but sleepless, refreshing Facebook endlessly in between doses of medication, the details came out about the special event in Brooklyn. We’d already secured tickets for their show in Manhattan at the Bowery Ballroom. But this was something very special (and expensive, and the tickets very limited). The Mekons would be recording a new album at the Jalopy Theater in Red Hook, and everyone in attendance would form part of a “feral choir” backing up the band. I couldn’t have concocted a more outlandishly fabulous opportunity if I’d been on steroids and out of my mind – oh wait, I was!

As “luck” would have it, I’d quit my librarian job due to my brain tumors, so all I had to do all day was [ponder mortality and] jump on concert tickets as they became available. They sold out very quickly, as there were only 60 on offer. Then another 15 showed up. I snagged three – one for me, one for J, and one for T, my old friend and partner in Mekons obsession.

That was late April. I had a goal. I would take my medicine as prescribed, I would try to get sleep (which for a long time would only happen with the trinity of Benadryl, Ativan, and melatonin), and I would need to trust my cancer drug, while also willing the tumors in my brain to shrink down to nothing. In addition to living from scan to scan, I was also living from one concert ticket to the next. I mentioned on The Mekons’ Facebook page that their tour this summer would help me fight cancer. I received a kind response. I could see past my surgery date in June and my next scan in July, because regardless of what happened, I’d be seeing my old friends The Mekons again, and recording an album with them, completing an entry on a bucket list I hadn’t even thought of composing.

I made it to July, obviously. There hadn’t really been any doubt in my mind I’d make it. From the start of this metastatic arc that began last September, I’ve just sort of known I would prevail. I couldn’t anticipate the many insane trials I would need to get through, of course – last fall, the most physically and psychologically challenging ones; this spring and summer, the most baffling and random and occasionally even amusing ones. I made it to the show at the Bowery Ballroom, which was the greatest set I’d ever seen them play (although I have probably said that about every Mekons show). It came complete with this unbelievable blooper/senior moment, which I only got to see later on video, because we weren’t at a good angle to understand what happened. Mekon + accordion + synchronized kicks = chaos (about 1:40 in to the clip).

That was a Tuesday night. The recording session with The Mekons, titled MEKONCEPTION, would take place that Thursday. Thursday turned out to be a heavy day for me. I woke up at 5 a.m., stressed out about a meeting I’d be having that morning at the city Department of Education, trying to advocate for Young A to get classroom support, based on concerns his teachers had last year. It was, bar none, the worst meeting of its type I’ve ever had (and because of Young J, I’ve had many). It ended inconclusively and we scheduled a new one, but I was so full of rage, I propelled myself on foot, over the Brooklyn Bridge (dodging tourists and bikes), then got myself pleasantly lost on the Lower East Side and saw a friend’s art show. By the time I picked up the kids from the camp bus I didn’t feel like wringing anyone’s neck anymore. Good thing – a long evening awaited.

We arrived at the Jalopy Theater a bit early. The first few faithful to show up revealed to us that we were in the wormhole of Mekons fandom. I counted at least two t-shirts from the now-defunct Hoboken club, Maxwell’s. No one I saw was obvious enough to actually wear a Mekons shirt, but Dennis and Lois, longtime Mekons supporters and merchandise table operators, were parked out front with their MEKONS vanity license plate (T tells me that years ago, they had a RAMONES one which kept getting stolen). One guy had flown in from Chicago, and there were doubtless others from farther-flung locations. Our friend T showed up. We took pews up towards the front, but not the very first row. I have long legs, so does J. Better not to incur wrath by tripping up a Mekon.

An actual choir director (a college friend of T’s, it turned out) came and gave us some instructions. All of the sound would be going through a single mic set up in the center of the room. The recording engineer sat to the side with his laptop, a smile on his face pretty much constantly. When a song was going well, he’d join us in our choral duties.

Suddenly, The Mekons appeared. It was hard not to be a gushing fan, but they were clearly multiply preoccupied with setting things up, so I wasn’t going to attempt to talk to them. Sally made stern announcements about what we were not to do under any circumstances (e.g. stamp our feet, knock over glasses, make noise at the end of a song before we were given a cue it was safe to do so). We were also forbidden from recording any part of the session.

I’d never been in the studio with a band (J recorded with his former band, but I wasn’t clingy enough to even consider coming along). And a band that has played together for this many years is as fascinating to watch as a string quartet of long standing – the intuition, the nonverbal cues, each anticipating the other’s moves – and also, the need to discover what went wrong when someone screwed up, so it could be fixed for the next take. The Mekons composed this entire album while on tour, which meant they hadn’t had too many opportunities to rehearse the material before recording.

Twelve songs, multiple takes for each song – I was totally impressed that the whole album came together in four hours. We’d record four songs at a time, with a break in between. During a break, everyone lined up to use the one restroom, or to get more beer. (I couldn’t believe people weren’t letting Mekons skip to the front of the bathroom line.) By the end, I could barely keep myself awake on the hard wooden pew. But when our turn would come to sing, I gave it all I could. I was a deputy Mekon for the night, and seeing how very hard they all worked, it would have been difficult to slack off.

It’s been over a week since this event, and I’m still marveling at it. That a band I’ve adored so much would want to raise funds to record an album this way is not surprising, and I was glad to help out there. But for the band to actually trust its fans to provide part of the musical input – for them to trust that we wouldn’t screw it all up – that was what made this experience so unique.

At the end of the night, we were torn between hanging out and talking to the band, and the fact that we’d been paying a babysitter for what turned out to be a total of seven hours (for almost six hours of which the kids were fast asleep). We took our complimentary tour poster over to Jon, the Mekons’ unofficial ambassador to the world, to have it signed and say hello.

I told him I’d been the one who said their tour would cure my cancer, and I was happy to report that so far, it had been working. Another member of the Mekons faithful stood nearby. She wore a head scarf and bore the look of someone getting chemotherapy. I hope the energy generated in the room that night speeds her complete healing.

And I wish The Mekons good fortune, fame and riches, and good health. Thanks for a singular night.

It’s been quiet around here, I know. I’ve been gritting my teeth for a couple weeks because of foot pain. I went to get that taken care of on Monday (after my session with the shrink), which was nice, but in the manner in which things seem to happen to me lately (e.g. all at once), I was up at 5 a.m. that morning with a pain that felt like a literal stabbing. Through my right eye.

Even though it had been a while since I’d perused the list of possible side effects of dabrafenib, I was pretty sure I had something like uveitis. It was a very sunny day, and I couldn’t possibly put my contact lenses in, which meant I couldn’t wear sunglasses, because I don’t have a prescription pair. I stumbled around the transit system and the sidewalks, keeping my right eye closed and trying to control the pain with Tylenol. At some point I spoke with Nurse Practitioner K and she told me to stop dabrafenib until I got my eye sorted out. However, unlike other times when I have presented with symptoms that may be side effects, this time she didn’t tell me to come in. Because she isn’t an eye specialist. I called my eye doctor and was told he didn’t see patients in the office on Mondays, so I could show up at 10:30 the next day and see if he could squeeze me in.

I kept my eyes closed through most of my session with the shrink (not a bad thing to try, actually – really turns your focus inward, removing the nonverbal feedback you might get from the person you’re talking to). Dr O was kind and turned off the overhead lights and switched on some floor lamps. As usual I cried and it felt like the tears might have done some good in terms of flushing my bad eye out (in reality the effects are negligible). I was able to open my eyes again for the last few minutes. Then I emerged into the fluorescent hallway and was blinded anew.

I had left myself an hour to get from the shrink (midtown, far East Side) to the podiatrist (Brooklyn Heights). The 4 train screwed me up. All the trains on that line were screwed up. I managed to get some phone signal at some point to call and inform them I’d be late. Mostly, I sat squinting through my left eye, keeping my right eye screwed shut, trying not to whimper because it hurt so much. I must have been a sight. At least I had a seat.

Got to the podiatrist, he got right down to business shaving down my dabrafenib-induced calluses while we made small talk. It was almost relaxing, except for the blinding lights. I have a friend, L, who has extreme sensitivity to fluorescent lights – they cause her migraines – so I think I have a rough idea now of how that must feel. Terrible. (Maybe by the time I’m through with all this, I will be able to empathize with sufferers of everything. I’ll be a walking encyclopedia of how different diseases and conditions feel.)

Once I staggered home, I knew I wouldn’t be able to do much. I got in bed and took a nap, I think. But I needed to wake up to get the kids from their camp bus. Somehow I managed, this time with sunglasses, but without any vision correction. I sat on a bench and pretended everything was fine while I waited for the bus. I considered for a moment that perhaps I’m getting too good at pretending everything is fine. (That’s where the therapy comes in handy.) I summoned J home as early as he could make it, and he made dinner. My prince.

J went to play basketball and I found myself alone with the kids and actually feeling a bit better. We played with Legos on the living room floor. My eye was feeling much better, which meant I could pay attention to how uncomfortable it is to sit on the floor at my age. Young J had invented a game where we took the Lego minifigures and paired them up with random accessories and told stories about them. It was a lot of fun. I need to give the kids more moments like that. That really needs to be my focus. It’s much easier to think that way when I haven’t also been the one getting dinner ready, etc.

Tuesday morning, I dawdled in the house. The eye doctor’s office had told me to show up at 10:30 and that maybe I’d get seen within a couple of hours. At 10:10, I was just about to pop into the cafe to get an iced coffee and something to eat while I waited, when I decided to call the eye doctor, and learned I had an actual appointment at 10:30. I can’t actually run these days, but I walked with conviction to the subway, got a train quickly, and managed to get to the doctor by 10:30 on the nose.

My eye doctor, Dr. D, has one of those wacky medical offices that seem very common in NYC – tiny exam rooms divided oddly due to space constraints and history, and every available surface chock-a-block with the doctor’s particular obsession – in this case, African sculpture. I sat and waited in one exam room, with a door behind me wide open that led to the next one. (Good thing confidentiality isn’t as huge an issue in ophthalmology?)

After the assistant took notes on my complaint (slowly spelling the word “oncologist” out loud to coach herself until she finally said, “well, good enough!”), Dr. D swooped in. He’s a big but gentle man. He was angry that his staff had not told him about my distress call the day before, saying he would have seen me in his office after hours, had he known. “Your pain is important to me,” he said, earnestly.

I filled him in on my story again (because I’d only seen him once before, a few weeks before my brain went haywire), and it seemed to affect him. He told me he’d just lost a patient the day before who had a primary brain cancer. He checked the pressure in my eyes and found only the right one slightly higher. By the looks of things, he told me I’d probably had this problem for about a week. I thought about all the consecutive days in the previous week I’d been wearing my contacts, possibly making things worse, but kept my mouth shut. No use dwelling on that. I tried a joke: “So, am I losing just one eye or both of them?” He was taken aback and told me I’d lose neither one. MENTAL NOTE: No joking with Dr. D like you do with Dr. P.

I still wound up in his office for a long time, because my eyes needed a chance to dilate. I called Nurse Practitioner K and filled her in. I called my mom. Dr. D finished my exam, and I asked him on behalf of Nurse Practitioner K to please fax a note. To my surprise, he said his transcriptionist would take too long, so he asked for the phone number and called right then and there. I don’t know who he spoke to nor whether the conversation went well, but I did hear him say at one point, drolly it seemed to me, “Well, the eye is part of the brain!” I was hugely impressed that he took it upon himself to call. You don’t see that too often these days. But then, this man is hardly in an ivory tower. I asked whether he’d be retiring soon, and he said no, he still had years of tuition to pay. As a parting gift, he gave me a pair of sunglasses usually reserved for cataract patients, and which cost him ten dollars a pair. They slip right over my regular glasses and are less unattractive than I expected. Still, I went to Warby Parker today to order some prescription sunglasses. I’ve been needing them.

I’m not sure where to situate myself right now. My checklist of symptoms are all attributable to the cure and not the cancer. “Chicken skin,” and little benign moles popping up here and there, and susceptibility to sunburn, a cough (I’ve never actually kicked the one from late June), and now iritis. Did I mention the sore throat? Can you be a hypochondriac if there’s cause?

I am feeling like a pincushion right now. Or a voodoo doll. I can’t think who’d hate me enough to have made one. Or perhaps I shouldn’t think about it? In any case, if they’re that far gone there is no making amends!

So it just has to be one foot in front of the other for now. That doesn’t make for a very interesting dance routine, I know. But better than jogging in place. Not sure yet if I’ll read this piece in Cosmo about life after cancer, because I’m not sure I want to know. Maybe you want to, though.

Sorry I’ve been quiet for a few days. I saw my shrink on Monday, and I’m not going to lie, things are getting very real in there. We’re starting to get to the heart of the matter. My shrink not only works with cancer patients and PTSD sufferers, she has survived lymphoma herself. So she’s a pretty heavy hitter in this particular realm. (Thank you so much, K, for recommending her to me.) Good scan results are good, yes. But – getting past the initial goodness – there are boatloads of uncertainty, fear, anger, self-criticism, and God knows what else, to unravel. I have a good coach.

I’ve been working out a lot this week – three days in a row, which gets you to the point where you don’t know where each particular hurt comes from because they seem to be multilayered. It’s good, muscle-developing pain though. I’m glad to have it back.

It’s not entirely my choice, to be suddenly exercising this hard. My period will arrive any second (and I already know how much my father loves reading about that), and if I’m going to prevent the unwanted guest of a migraine, I need to bust my ass at the gym, often. It’s the only thing that helps, which I say because I once took one of the migraine pills my doctor prescribed, and did not enjoy the feeling of a prickly caterpillar crawling up my face. Eesh.

Despite the exercise, by late afternoon I was in the grips of a pretty bad depression, almost tropical, almost like a weather system. I observed it and asked J to excuse me for a while (meaning he made dinner) and just lay in my bed unable to move, almost. There were multiple reasons I gave myself for feeling this down, but it all comes back to hormones. I’m hoping this resolves in the next day or so.

I’m lucky, though, that I’ve had these few hours to lie around feeling totally flattened. Because it made me remember the first line (“Quand le ciel bas et lourd pèse comme un couvercle…”) from this Baudelaire poem, which I spent time studying both in high school and college. The site has a number of different translations of it, so you can choose the one that resonates most with you. If you want to hear it in French, here’s an over-the-top rendition:

Moral: Poetry can save you, if you let it.

It’s so tempting to be relieved when you get good news. It carries you for a few days. Maybe a week if you let it be the excuse for a good party. You shove all the scared people in the box and put it in the closet for a while. (By the way, I’m really loving the work of this illustrator I discovered on Flickr.)

But it’s unsatisfying, ultimately. Don’t think for a second I’m ungrateful. Of course I’m grateful, for every second more I get to spend alive and reasonably healthy (although Young A’s metric for health these days is: Can you play tag now? If not, then you’re just not healthy enough for him, sorry).

I need to be able to celebrate good scan results for five years before I’m no longer going to be followed so closely. That’s a lot of scans and a lot of years. I will start taking my health for granted, and you will too. I won’t need to write a blog post after each good scan anymore. Or, I’ll get bad news and have to go down the rabbit hole again. All of this is so Magic Eight Ball.

There aren’t any guarantees. No one offers me a warranty anymore, or even a one-year lease. I might become one of those chronically sick people. I might have to settle for never being off medication, and I might have to accept the damage that being on medication has done to my former self-image (the one that still torments me and makes me feel unsatisfied with the small successes).

Sorry to make it sound like I’m riding on a bummer. The fact is, I’m not, really. Maybe this way of living is perfect for me, this inability to do long-range planning, because I’ve honestly never been good at that in the first place. I’m an optimist at heart (though a very cynical one) so maybe it’s time for me to read Candide or something. Get my mind off everything. Disappear into books, like I did as a child.

For now, I’ll just get out of my pajamas.

All is well on the CT scan. All hugs all the time. Nurse Practitioner R is 22 weeks pregnant and starting to show, and feel the baby kick. She is good at delivering kicks too – in the ass. “You’re tired?” she said. “You’re fine! Get over it! Start moving again!” I’m sluggish in the wake of no steroids, apparently – even though my last dose was six weeks ago.

She informed me that the weird little things that have shown up on my skin as a result of the dabrafenib can be removed by my dermatologist and it won’t be considered a “frivolous” cosmetic procedure, since these things are a result of drug therapy.

J and I had lunch and then came to the Morgan Library, where I’m meeting a friend for coffee soon. But I’d never actually visited the place in all my years in NYC, so we just took a very quiet walk around his library. In counterpoint to how I feel (like screaming and shouting from the rooftops), I quietly padded around on the rug looking at Mozart and Beethoven manuscripts, letters from John Adams and Thomas Jefferson, and one of the three Gutenberg bibles in the collection here.

Now, though, I’m heading upstairs to see a special exhibit on 150 years of Alice in Wonderland. That has been a book very close to my heart, ever since my dad and I read it together when I was seven or eight. And I’ve thought of it often in the past 11 months, when I’ve had treatments that don’t seem all that different from the EAT ME cakes and the DRINK ME potions that transport tiny or enormous Alice to previously unknown worlds.

I’ve encountered a lot of interesting things on this journey, but I wouldn’t be sorry at all to have it be at an end.