Not on the walls or roof

Shingles, by Eric Verspoor on Flickr, licensed under Creative Commons

J woke up with a bad rash this morning. It had started as a pimple on his lip yesterday afternoon, which got angrier as time went on and by this morning, it had crept up towards his eye, and he had a headache. He’s had bad reactions to shellfish before, and he had eaten some on Friday, so we assumed that was what was going on.

I woke up in my usual fog but soon realized this day was going to be different than what we’d planned. J was going to pick up the kids from their overnight at his parents’ house and take them to a baseball game and then for Chinese food. I was going to… well, I can’t honestly remember. Maybe a bike ride? Some reading?

Instead, there was a rush to eat breakfast and get to the urgent care place by 9, when they opened, so there wouldn’t be a long wait.

J came out with unexpected news: Shingles. He hasn’t been in a lot of nerve pain, which is usually associated with shingles, but his subsequent visit to the ER confirmed that’s what it is.

I was a little concerned about my exposure to it, and the kids’ as well. But they’ve been vaccinated, and I’ve already had chicken pox. Also, even though the general consensus on all the general consensus type health websites said that “cancer patients” should be especially careful around people with shingles, it turns out that what this really means is “chemotherapy patients,” and I am not one of those.

I had a brief conversation with the doctor on call at the cancer center, who sort of rebuked me for saying I was receiving immunotherapy drugs. Apparently the drugs I am taking now, orally, are best termed targeted therapies. OK, doc. Thanks for the correction. Oops.

And by the way – I should be totally fine around J. We’ve asked his parents if they could keep the kids for another night, and J is staying home from work tomorrow. Shingles can be triggered by stress, and I wouldn’t doubt that that is underlying what felled J. I blame myself in part for the stress, of course, so I could even go as far as to say I gave him shingles… but that’s just ridiculous. And solves nothing.

It is always instructive to have the tables turn on you, so I’m going to try to muster some strength to be supportive while J rests up. It’s astonishing how much easier that is when the kids aren’t around causing general chaos.

I’m so sorry you’re sick, J. I’ll try to take as good care of you as you have of me. (Also, I was glad to have a chance to drive today. It’s been months now. I didn’t hit anything! and had zero problems parking!)

What? This little thing?

These lil' things? Naw, they wouldn't hurt a fly.
These lil’ things? Naw, they wouldn’t hurt a fly.

I got home today and kept forgetting to  look for the Mekinist shipment in the fridge. When I finally did, I found they triple-bagged it. God forbid they should use only one, or even only two, bags. It’s a tiny pill, almost cute. I take one, once every two days (on the same day I take dabrafenib). I start tonight.

I’ve been taking dabrafenib for months and haven’t had the fever/chills side effect. I’m a little worried this twosome will bring it about. I’m also a little worried because I read the insert that came with the package, which reads like a found poem I’ll call TALK WITH YOUR DOCTOR:

Tell dentists, surgeons, and other doctors that you use this drug. You will need to have heart function tests while taking this drug. Talk with the doctor. This drug may cause high blood pressure. Have your blood pressure checked often. Talk with your doctor. Have blood work checked as you have been told by the doctor. Talk with the doctor. Sometime, dabrafenib is taken with trametinib (Mekinist). If you are taking dabrafenib with trametinib, be sure you know the side effects that can happen with each drug. When these drugs are taken together, the chance of certain side effects may be raised. These side effects can be very bad and sometimes deadly. This includes bleeding, blood clots, eye problems, fever, heart problems (like heart failure), high blood sugar, other cancers, and skin problems. Talk with your doctor about the chance of side effects with your drugs. Very bad eye problems have happened with this drug. Sometimes, this has led to loss of eyesight. Call your doctor right away if you have blurred eyesight, loss of eyesight, or other changes in eyesight. Call your doctor right away if you see color dots or halo or if bright lights bother you.

Do I know how to have a good time, or what? Then, you get to page two, where they describe what the actual side effects might be, in living color and 3D:

But wait! There's more!!
But wait! There’s more!!

So in my infinite wisdom, I’ve decided to take my first dose tonight, right before bed. At least if it makes me die right away, I’ll die in my sleep, I guess, is my thinking. On the off chance I bleed to death or go blind and freeze to death or develop fatal stools or breath that smells like fruit, please know how much I’ve loved you all and how much I’ve loved writing my way, sardonically and angrily, through almost a year’s worth of this crap. Also, please know I’ve never, ever liked blue cheese.

You should also know how completely melodramatic I’m probably being right now. I spoke with Nurse Practitioner R on the phone today, while I was on Amtrak and the kids were watching a movie. She sounded mildly annoyed, because she’d been in with a patient when I called, and maybe she was the only one around, and she’s heading into her third trimester of pregnancy which means she is going to have less and less tolerance for bullshit. Still, I told her that the pharmacist had freaked me out over the phone. She begged me to please continue to let them handle it, and not to listen to a random CVS pharmacist in Illinois who does not have access to my medical history. Apparently I had an EKG last April, in the hospital. (I was so out of it, I guess I wasn’t aware.) I don’t really need another one. I tried to object to the fact that I’ve been doing so well on dabrafenib and didn’t understand why the combo was suddenly necessary. She mentioned the one argument I’d heard in the office, which is that the two together tend to mitigate side effects (alarming package inserts notwithstanding, I guess). But then she mentioned the more salient argument, which is that one drug alone can eventually lead to resistance, whereas the combination of the two drugs makes that much less likely.

That, I can get on board with.

À bas la résistance!

I wish you all a healthy night of sleep. And I wish myself the same. Still not sure if I’ll keep the thermometer on my nightstand, but it’s a thought.

Needle scratch, mic drop, what the… ?

Needle, by Jenya Kushnir on Flickr, licensed under Creative Commons

Last night, I sat out on the porch of what may be the oldest tavern left in Rockville, Maryland, and had beers with some college friends. It was therapeutic and so long overdue. But I got home late, setting me up for a cranky day today.

I walked out of Target today, where Mom was buying the kids their school supplies, because I got a call from the pharmacy that handles my cancer drug shipments, to schedule a date for them to send me my bottle of Mekinist.

Dr P and her staff obviously took care of me once again, because as before, the pharmacy rep started out telling me I’d have a $10 copay, but on his further investigation into their computer system, the copay magically evaporated. So far so good.

The call took an excruciatingly long time, with the rep blaming his computer for the delays, but I had to stay on to have a word with the pharmacist at the end. I figured this would all be pro forma. After all, I’d read up about Mekinist online and knew the combination of it with Tafinlar would be helpful. Right?

Wrong! I’d been kind of distracted. I found out that I’d be starting the two-drug combo treatment about five minutes before leaving for a week’s vacation. I didn’t spend a lot of time thinking about it, because… I guess that’s how I cope?

The pharmacist today said, “Now, Mekinist carries a risk of cardiomyopathy, so you’ll need to have a baseline EKG.”

What??? I heard cardiomyopathy, and instantly thought of my friend’s baby, who died of this condition, at three days old. Could this medicine, which they are using to shrink my brain tumors, have the same effect? Why exactly do I need to start fucking with my heart, the infallibility of which is, at this point, perhaps the only thing I’ve been able to truly count on in the past year?

The medicine is coming in tomorrow, and has to live in the fridge, and I’ll take it on the days I take Tafinlar (every other day). But – BUT – I am not popping even one of them before having a more reassuring conversation about side effects with Nurse Practitioner R or K. Or even Dr P.

Up until now I’ve been focused exclusively on the result of my next MRI, in mid-September, and then the result of my next CT scan after that, hopefully showing shrinkage/disappearance of the brain tumors, and no new metastases, respectively. I desperately want to stop taking the anti-seizure drug I’ve been on since April, which makes me totally spacy, exhausted, and possibly also fat (but I’ll own up to personal choices exacerbating that). My hair has been falling out a lot, not that anyone would notice, because I’ve always had plenty of hair to spare. My vision still hasn’t completely cleared up after my bout with medication-induced iritis, and now the other eye has fuzzy vision. I had a pedicure the other day, and the callus removal portion of it was excruciating.

I so badly need things to get less complicated, not more. I realize I may not have a choice, if I want to come out of this alive, but for the love of pizza! Let’s leave my heart out of it! (I’m trying to use less bad language. It really bothers Young J when I curse.)

I had a rough afternoon with the kids. I was exhausted when we got back from the school supplies outing, and they wanted to go to the pool immediately. I took a nap for a little while, then they came in and woke me and it just spiraled into chaos for about a half hour before we finally got to the pool. So frustrating. I know it’s the extinction burst of summer vacation that’s making them so crazy. But I’ve really had enough. More than enough. I went on strike before dinner, and the kids helped Mom prepare dinner. Young A knew how to trim asparagus (he learned at school). Young J whispered to me his secret to delicious broiled portobello mushrooms, which I will divulge here just for you: “You need to use an extremely large amount of salt. And soy sauce.”

By dinnertime I was calm again (and exhausted, having served as non-swimming Young A’s ferry boat across the pool about a dozen times). I even sat down at the piano and played some Chopin I hadn’t touched in years. (It had its moments.)

I’m worn down to the nubs, just in time for my promised outing to the National Zoo with the kids tomorrow. Time for me to get to bed. Last night I found a teddy bear on my pillow here, and clutched it all night, gratefully. I’ll be glad to have him there tonight too. (Missing you, J.)

Endless Summer

A sliver of light left.

No apologies here. It was good to take a break from analyzing every setback, every action, every failure to act. I vacationed from that while we were away. What else did I do? I stubbornly refused to become mired in self-pity, even when it would have been the easiest thing in the world to do. I think I did okay there, for the most part (although maybe J remembers differently).

Soundings and boundaries.

We ate a lot, as we tend to do when we have access to a grill. We spent so many unforgettable moments with the kids, I worried they might start forgetting them. When a single week contains an epic bike ride, swimming in salt and fresh water, boating, a whale watch, a colorful parade, a juggling show and a campfire at sunset on the beach… well, I’m just impressed I remembered all of it just now.

On our last full day, we beached it up most of the day. I took out the inflatable raft and decided to let it float me wherever. It was relaxing, the sun went behind clouds for a bit, and there was a little breeze, so… I drifted. Far out. I think I even started falling asleep. It didn’t seem far, until I slid myself off the raft and started kicking through the suddenly-frigid water back to shore. It seemed to take hours, because the wind and the current were against me. Our friends and J were watching from the shore, wondering at first if I’d actually fallen off the raft, then watching me laboriously work my way back. I wasn’t waving, but wasn’t drowning, either. The bay, though, had suddenly become a slightly menacing place, which you’d never be able to discern in this photo of it at its best:

Last sunset.

(The mosquitoes are also invisible.) I did mention to J that if at any point I became truly, gravely ill, floating out to sea on a raft would be my preferred exit strategy. J is getting used to hearing this sort of thing from me. I hope.

This feels like the summer that will never end (and ours ends a week before public school families’ does). I don’t really know how it will feel once it’s over. Once I can plan my own days and pick up at the kids at – new this year – the SAME TIME after school. I’ll be so grateful to go back to the gym, to get back on my bike, to return to my housewifely duties. I’m also planning to take a few days sometime in the fall to go on a writing retreat. Nothing particularly organized, just time away from the kids and J, in a place that is pleasant but perhaps sufficiently uninteresting that I won’t spend all day sightseeing, because I really want to just write. I don’t want to feel guilty or that the kids are missing out, so I feel like I need to go somewhere pretty boring. Cleveland?

The question of if and when I look for work again is wide open. I’m well aware that the longer I spend unemployed, the less employable I become. But I’m also feeling a little wary. I mean, look how it went last time around. It’s enough make someone with a stellar and uninterrupted work history gun shy, let alone someone who was listed as “Retired” the last time we had a credit check done, because I’ve been out of work that long. I am ready to go back to work – my brief experience of it earlier this year proved that to me. But I don’t exactly get a say when it comes to this cancer. So I may not wind up being able to look for work on my own terms.

For now, the train just left Baltimore, and the boys’ video is ending, which means that any minute, they will remember I told them we could open the Twix bar I got them after Baltimore, so that their sugar-addled little bodies would not terrorize the rest of the passengers for much more than an hour until DC. I’m trying to accelerate this last week before school… but it isn’t cooperating yet.

Water, I’m coming for you

The sea is the religion of the nature - Fernando Pessoa, by Pedro Ribeiro Simóes on Flickr, licensed under Creative Commons
The sea is the religion of the nature – Fernando Pessoa, by Pedro Ribeiro Simóes on Flickr, licensed under Creative Commons

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.

Meet the new drug


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?

Un petit rien

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.

Reverse direction

take off... by Stig Nygaard on Flickr, licensed under Creative Commons

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.

Long day’s journey

Maya Deren, still from AT LAND (1944)

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…

Making Me Understand: The Mekons

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.

Invasion of The Mekons
Invasion of The Mekons

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.