Today was my first time working with the home organizer we’ve hired. I’d been so impressed with the work J did with her. But this morning I woke up feeling like death, after a very bad night of sleep due to congestion, a sore throat, nothing cancer-related at all

By 10 a.m. I wondered if it even made sense to go through with the appointment, even though I’d emailed last night to say I was going ahead. She came into my bedroom and started emptying the Problem Bookshelf. It has been the place I stuff things when I don’t know where else to put them, and over the past 8 years it has gotten overstuffed, and not just with books. Old birthday cards, boxes with old journals, my notes from English 453 (Literary Theory). I read part of the kooky mimeographed syllabus to D, the organizer, and we both started laughing. I had told D I needed to lie down but she’d actually put the entire contents of the bookshelf across my bed. I was going to have to work for a rest. I managed, somehow.

Four hours later, we’d unclogged the bookshelf (which now has books on it in neat piles depending on which library they come from) and even moved on to tackling my desk in the living room. The truth is, I’m pretty sure I’m going to give that desk up to Young J and Young A as they learn to do useful stuff on the computer, and I want to set up camp with my laptop in the bedroom. A few logjams remain, like my file box of “broken books” (mostly damaged pop-up books) which the kids still want access to. (Or do they? Hmmmmm.)

I picked up my shoes from the shoe guy, ate ramen (which tasted perfect in spite of my congestion), then came home ready to move into my new wallet. Almost immediately, I was met by this:

My grandfather brought me the quote in German one Friday evening when he came for dinner. The following week, he brought me the translation, written on the back of a grocery receipt and glued to a piece of cardboard. Ive carried it in my wallet ever since. It turns out to be a pretty standard, classic quote in German, something people use in tributes or obituaries.

But it certainly means more than that to me, at this stage. I love that my grandfather chose to change the gender in the translation. And I really am a girl with hers contradictions. And these days, I really miss having grandparents.

But it’s not at all cancer-related! Just some kind of a walloping cold/sinus/strep extravaganza. I woke up feeling worse than ever, and with no voice. J had to do all the yelling and kid wrangling this morning. I was loath to cancel my appointment with the home organizer, but I did email her to tell her how I’m feeling. She says she will do all the work. I wonder how that is possible. I have books checked out from three or four different libraries strewn across my bedroom, and that’s just the start.

I just checked in with Nurse Practitioner R who said I should still plan to come in tomorrow for the MRI and talk with Dr. P in the afternoon. This is a big day, after all – they’ll decide when I get lasered.

I’m sure I’ll make it there, but I wish they had napping pods in the cancer center like they do in Japanese train stations. I could do with a nap. And it’s too squalid to nap in the waiting room.

I’ve avoided talking about God much here. Because since last fall’s bombshell news I have avoided talking with God much at all. We are on hiatus, we are on “a break.” It’s the best thing for the both of us right now. I don’t tell my kids I’m on a break and they see me reciting the same blessings on Shabbat that they are. For me, this is a family ritual. These are words we say communally and it doesn’t really matter if I truly mean them, or not.

But today, having had a crappy night (including multiple shushings from J because I was snoring, which it horrified me to think I was actually doing), and waking feeling not much better, and realizing my grand scheme for the afternoon was no longer realistic – take kids and my mom on the subway back to her bus and then take them to see this installation at Madison Square Park. And get some gelato at Eataly.

CANCELED. I went to urgent care after we had brunch with Mom. They swabbed my throat which apparently does have white spots, but the rapid strep came up negative. Still, they felt I needed amoxicillin. I gave them the short version of my cancer treatment and they were suitably amazed. The assistant asked me to spell all the drugs I’m on. Good thing there’s an app for that.

I dropped off the rx at the pharmacy and they said it wouldn’t be more than 15 minutes. I was already so tired I didn’t want to walk the five minutes home and then five minutes back. So I went next door to the Latin place and got chicken noodle soup. I’m so congested it tasted like nothing, despite all the salt I dumped in. The buttered toast that came with it, much more yummy. Medicine mouth + congestion = low satisfaction yield on meals unless they are buttery, fried, or fried in butter. I’m about to drink a gallon of Throat Coat tea. Paired with a blueberry doughnut.

I was sad at the undoing of my grand plan for the afternoon with my boys. But the installation isn’t actually due to open until June 1, my mom can manage getting to her bus on her own (and she has), the kids got Shake Shack for lunch (as did J, who is heading off to his basketball game questionably fueled on burger and shake).

In conversations lately, the image of my family gathering around me and saying in very stern tones, “Don’t screw this up, Deb,” has been circulating. Obviously, there has not been such an intervention. But when you are a pioneer at something, even if it is something crappy, like cancer, it is nice to think of your family gathering around you and giving you that kind of courage.

Actually, I think this image stems from a summer job my brother G (whose post is coming, it’s coming, and he has already chosen a cartoon character for his avatar) got me when I was in high school. He was employed by the company and got me a temp job there. He couldn’t resist wandering over the first few days and peering over my shoulder. If I made the slightest typo he’d mutter under his breath, “Deb… you’re fucking up! You’re fucking up, Deb!” Yes, it was ridiculous, I don’t know how I survived, but they really liked me there and I was not, in fact, fucking up. Nor am I now, I don’t think, at least not yet. I hope my family is proud of my work so far.

Last night and this morning a song was running through my head. It’s not quite a niggun (which is a wordless Jewish spiritual tune) but close enough. It takes as its lyrics something Rabbi Nachman of Breslov said. He was a colorful figure. His disciples today seem a little batshit or on drugs, to wit (warning – this video runs 14 minutes!):

But it makes me happy to see them. Why not? You see Hare Krishnas dancing with abandon in Union Square, but these guys? They’re MY people. I could dance along with them. Well, or maybe sort of near them. (They probably wouldn’t dance with women.)

I think I learned this song at a kooky Jewish summer camp in Simi Valley CA which I attended while I was in college. The demographic was ages 18-27 and I think they were trying to turn us into future leaders of the Jewish community. That worked out really well for some people who have actually become leaders, but I have never had any inherent leadership qualities. I did make some good friends there, though I’ve fallen in and out of touch with them, and I remember the kibbutz-like feel of the place that actually made someone more than once, during a discussion, talk about “my friends back in the States” – as though some whitewashed buildings and eucalyptus trees and everyone wearing all white on Shabbat were enough to teleport us directly to Israel. Mostly that summer I danced – there was an excellent folkdance teacher there and we performed at the end of the month. And when I wasn’t dancing, I was singing. This was – I am pretty sure – one of the songs. I’m not sure why I’ve chosen a day when my voice is froggy and congested to make my vocal debut here, but if you hadn’t noticed, strange things are happening on the regular, and sometimes it’s because I make them happen.

The lyrics are on Soundcloud but reproduced here:

Rabbi Nachman of Breslov used to say: DO NOT DESPAIR!

If you are having a hard time, you just need to be happy!

It sounds so simple, really.

It’s pretty great to feel fatigue, even though it’s because I have some kind of unbelievably pedestrian infection, which may or may not be strep. It’s almost embarrassing to write it. This? This is harder to deal with than cancer?

It was novel to go to urgent care about something so mainstream.

I’m so sleepy I can only type with one eye open or the other. So I better nod off.

It wasn’t that long of a train ride home from Union Square. But I was sure I’d get a seat and my barking dogs were demanding one. I’d gotten my glasses adjusted, done 90 minutes of research and writing work at the library, then hiked up to the big box stores to hunt for a new purse, wallet, and footwear. I was dedicated. I found these things. “You wouldn’t believe how much I saved, honey,” as the saying goes.

I didn’t manage to get a seat. I didn’t manage, despite a woman sitting almost under me getting up to insist someone else take a seat – someone unseen by me, who refused. I should have just said, “Hey, I’ll take it.” But I don’t know, something stopped me. I was going to get my own goddamn seat when the train stopped at Canal. I gulped my water desperately while I cased my fellow seated passengers. I knew those two women were getting off at Canal. I suppose it was racial profiling, really. But I was right.

I was right, but not close enough. In the space of a millisecond, while I lurched towards the seat with my shopping bags, three New Yorkers slid into place. That was it. I’d be standing. Just close enough to rush hour and no one really getting off now. For a moment I thought I’d cry. An older woman also standing surveyed me briefly.

What the hell would crying have done? And viewed objectively, what makes me look like I’d qualify for a seat? I’m looking – er – healthy these days. I am not bald. I gulped my pity party away with more cold water and settled in for the long/short ride. Fuck it, I thought, once I was feeling better. I don’t want to qualify, ever. My feet hurt? That’s not cancer, that’s bad shoes and bad genes. (One day when our health insurance recovers from its current sticker shock. and the kids don’t need me to take them anywhere, I’ll have bunion surgery and have the feet of a newborn again. Ah, reverie.)

Then someone came on who really did need help. His name was Michael and he was HIV positive for I forget how many years and I took a dollar out right away. “Thank you, everyone. I want you to have a safe weekend. I want to see you here on Monday,” he said, as though we were all colleagues, going down into the mine. Perhaps we were.

I emerged from the subway and waltzed over to my shoe guy with my newly purchased (for 10% off due to damage) shoes which just needed some glue. He said he’d fix them by Monday. Have a good weekend, new summer sandals. I want to wear you on Monday. On Monday while I work with the organizer, who is going to survey my new purchases and the books I checked out of the library and wonder if her proclaiming J and I “not hoarders” may have been a bit premature.

Have a good weekend, everyone. Shabbat shalom. Stay safe. Don’t qualify for a seat on the subway. Abide. And all that good stuff.

Maybe I really am back in college. I’m at an academic library this afternoon taking notes on a scholarly article when I should be out shopping for a good new purse for the summer and some sneakers that don’t make my feet hurt.

My priorities may be a bit off.

I’m starting a recurring feature (since I think I’ve posted enough in this blog to do that now) called Making Me Understand. Ruminations from inside my illness about art (any form) that has taken on new contours for me as I struggle with disease. I already posted one earlier this month, a quickie on a Frank O’Hara poem. This one may run long, though, because there are some odd coincidences in it. Go grab a coffee. A cookie, too. Relax.

When I think back to how the name John Lurie first entered my consciousness, it takes me back to a place I’ve been spending a lot of time in in my head lately – college. I attended a very large state land grant university, and lived in a brand-new foreign language dorm where we each signed a contract vowing to speak our chosen language as much of the time as possible. Italian was mine.

It was awkward and difficult at first – the native speaker who lived with us was getting a Ph.D. in Math, her English was atrocious, and none of us were all that fluent. But we were committed. I cheerfully answered the phone for four years, “Pronto?”

One of my roommates, M, had taken a gap year between high school and college, and went off to be an exchange student. She had taken Spanish and expected to go to Spain. She was sent to Sardinia instead. She was in a tiny town where the old ladies continually told her what a shame it was, she was such a nice girl, but as a Jew she was going to burn in hell. (Forgive me, M, if I paraphrase incorrectly.) She had many adventures. I envied her – but also maybe not, because it sounded like a hell of a place.

M told us one night about a movie she’d seen while in Sardinia. It was called Daunbailò. “What?!” It didn’t make any sort of sense, like most Italian translations of American film titles. I’d eventually go to see My Own Private Idaho while studying in Florence – dubbed of course. It was rechristened Belli e dannati (The Beautiful and the Damned).

It turned out to be a film title that didn’t make much more sense in English: Down By Law. And that was how I found out about Jim Jarmusch, and that Tom Waits and John Lurie and Roberto Benigni (one of whose later works I maligned here the other week) all went to Louisiana and made one of the best prison break movies I’ve ever seen. And watched obsessively, again and again, until I practically knew all of the dialogue. I’ve only ever reached that level of obsession with one other movie, Rear Window. Here, a representative and most favorite scene of mine:

And yes, I’ll confess I found John had that lanky attractiveness that I eventually also found in my foxy and very tall husband, J.

I have to say at this point that I feel a little weird writing this post, because John will probably see it. I asked him a couple weeks ago if it would be OK to use some images from his artwork and write this tribute. He was fine with it. I hope this turns out OK, John. Let me know.

About four years ago (Facebook tells me), I one day got a friend request from John himself. I was gobsmacked. How the hell did he know about me? The Facebook interface has changed a million times since then, but I have a hunch.

My “About” section on Facebook has a few choice quotes. And one of them comes from John:

“I am writing this real slow, because I know you read real slow.” – John Lurie

I’d seen that quote at an art show of John’s work in Chelsea, at the Fredericks and Freiser gallery. I see now from the website that was his first show there. It was my first exposure to his visual artwork.

After discovering his work in Jarmusch films, I became aware in the 90s of John’s music (which featured on many soundtracks) and eventually bought a few albums by the downtown so-called “fake jazz” outfit he fronted, The Lounge Lizards. His brother Evan Lurie was also a member, and there was a revolving cast of the biggest names in the downtown jazz scene cycling through. There is apparently some debate about the term “fake jazz” – what the Lounge Lizards were playing was in fact straight up jazz, and yet there was something about it that spoke to me, a lifelong jazz ignoramus, beyond the little bit of Louis Armstrong and Ella Fitzgerald we’d had in my house, to play in between symphonies and string quartets. It also gave me some early common ground (and cred) with my boyfriend-now-husband J, who is an unbelievable jazz buff. The incredibly rich orchestration of the Lounge Lizards’ work, and John’s occasional spoken word digressions, which were usually hilarious, drew me in. I dug this music.

Here’s an excellent entry point to their work, the music video for “Big Heart,” filmed, and directed by John, in Sardinia:

The wild, berobed folkdancing!  The band travelogue segments! A swim meet! All with this exuberant groove in the background. “Big Heart” makes your heart bigger. (But not in a medically dangerous kind of way.)

One of my favorite spoken word segments from the Lounge Lizards’ oeuvre is this track from their beautiful, final album, Queen of All Ears:

“The yak is sick! The yak is sick! The yak is burning up with fever!” (Have I played this for the kids yet? I think they are old enough to find it hilarious. Note to self: Soon.)

There is much more terrain to explore musically. I’m not a music writer. I do love music with every fiber of my DNA, but I also get a little tongue-tied when trying to explain what it means in a more global way. I don’t have the detachment of a critic, I have the geeky zeal of a fan.

I got to see the Lounge Lizards exactly twice. Once was in June 1998, I believe, at the Bowery Ballroom. I’d moved to New York City that February, but that show made me feel like I’d gotten my official citizenship. On the subway ride down to the show, I overheard some Israeli guys talking about me on the train in Hebrew. They were saying how good-looking I was. That never happens to me! But it was that kind of night. I even had a brief dialogue with John, who asked us (the audience, not ME) how we were doing, so I yelled back, “HOW ARE YOU?” And he complained from onstage that he wasn’t so good, because his suit didn’t fit right.

I also happened to be a very avid amateur modern dancer when I moved to NYC. Every Saturday morning I took the train 45 minutes downtown to Noho, to the Jose Limón studio (sadly now gone). It was at the top of a building. I have no idea how I figured this out, but I became aware that John had an office in the building and was always hoping to run into him to say hi. One Saturday after class, I was on the pay phone in the lobby, and saw him saunter past on the way to the elevator. I interrupted my friend to yell after him, “JOHN, I’M A HUGE FAN!!” I heard the elevator doors closing as he said, “Awwww, thanks.”

In case you didn’t know it, John also produced a miniseries of fishing encounters with famous people, some of whom he was friends with, and some not. It was called Fishing with John, and it was hilarious. You can find some of it on YouTube if you want. But only if you like to laugh. If you don’t like to laugh you shouldn’t be here, anyway.

The second and last time I got to see the Lounge Lizards assembled onstage was at a 20th anniversary show at the Knitting Factory, in November 1999. (Oh look! I found it on MTV News!) It was another transformative experience. I have never done drugs (well, not until I got cancer and had few other choices), but this show was like a drug to me. It was much closer in and sweatier than the show at the Bowery, but every bit as great.

John later put out some recordings with The John Lurie National Orchestra, and then a recording under the moniker Marvin Pontiac.

I’ve never actually had a conversation with John face to face. I passed him once and said hi when he was up at Columbia University, to give a lecture on his artwork (I’m getting to that, wait for it). We’ve traded a few messages on Facebook.

Since he started drawing and painting, I’ve felt much closer to him. His artwork reveals truths through brushstrokes, blotches that look like stains (but intentional), and always, always, titles to the works that are jaw-droppingly accurate or just funny as hell. I didn’t know an artist could draw you in to his work with humor, but that was definitely the hook for me here. J bought me a lovely coffee table book of John’s work for my birthday one year: A Fine Example of Art. Unfortunately we have small children and all of our lovely art books have been under house arrest in a closed cabinet for years. When the children leave or get too old to destroy spines of books, I will rediscover it.

I’ve created a slideshow of some of my favorite paintings of John’s. All images belong to him and are taken from his art website, John Lurie Art. The site used to say, “If you live in a home, you have to buy a print.” And I’d say, if you have $500.00 to spend on an limited-edition, very high quality art print, I would love it if you did. My parents were kind enough to buy us one last year, the first one, “Men Walking to Work Over Flowers,” when Mom discovered John’s art on Facebook and promptly fell in love with it too. We never get tired of looking at it. The boys love saying the title of it to people. They like knowing the name of an artwork.

I leave the thing that most compelled me to write this insanely long post until last. It is some very sad news indeed. John can no longer play the saxophone. He suffers from Advanced Lyme Disease. Advanced Lyme Disease is a disease that is still very poorly understood by the general public. A recent documentary, The Punk Singer, about another musician, Kathleen Hanna of Bikini Kill, who also suffers from Advanced Lyme Disease, revealed to me the unremitting crappiness of this disease. And how frustrating it is to have a disease that is so poorly understood and so often not even accepted as a legitimate malady.

My situation is different, but I face the same incomprehension – in my case, it has to do with the treatment I’m getting – immunotherapy – and the fact that no matter how upbeat I may sound on this blog and genuinely feel in person, there are some who will never stop looking at me with abject pity because the C word by necessity cancels out any good thought in their minds.

On September 9, 2014, I arrived at the cancer center to get the results of my most recent scan. I was confronted by spots on my lungs and swelling in my lymph nodes, blindsided by a metastasis I certainly hadn’t felt happening and could scarcely believe, which propelled me down the weirdest rabbit hole of my life.

On September 27, 2014, J and I were in third row seats at Town Hall, for the culminating event of a month-long tribute to John Lurie’s music and art. The evening was called The Music of John Lurie. It featured many of the musicians who’d played with him in the past, and his compositions from the Lounge Lizards, and some of his excellent soundtrack music. I’d messaged with John a couple weeks before to tell him I was excited for the event. It wasn’t clear if he’d be there.

Then the stage lights went off. A figure made its way to the front of the stage in darkness and sat in a chair. Then the lights came up. It was John. Older, looking larger than life (but who isn’t these days?). He played some harmonica – just like he did onstage with Canned Heat, when he was a teenager in 1968. And then, a bit later on, this happened.

For maximum chills pay attention around 2:02. I thought I might jump out of my skin at that particular moment. But jumping out of your skin doesn’t actually save you from metastatic melanoma. It was so good to see my friend John, being celebrated by an auditorium full of people who love what he does, in every art form. I wish him health and long life. And I’ll keep looking forward to transmissions from his universe.

While you’re waiting for my next post (hopefully later tonight), please enjoy this song with my compliments. I dedicate it to all the people who made my day extra momentous and special: L, K, L, D, J, B, and of course Mom, J, Young J and Young A.

I love those two-headed screwdrivers, don’t you? The ones that you can rotate and either have a flat or Philips-head, and maybe sometimes rotate the shaft of the thing around and you’ve actually got four options at your disposal? We of course have about three different screwdrivers in our home that are like that – I know I brought at least one to the marriage. The options are dazzling. We’re also trying to declutter. J has been working the most in this realm, but my number comes up next Monday. Four hours with the home organizer. J has been having a sort of catharsis working with her. I’m not sure I’m ready for something that heavy, considering what I’ve been dealing with the past month, but I am happy to get rid of some crap at last. She’s going to make me go through my papers. I’m living in a nest of papers. Maybe I’m a rodent.

I’ve been feeling pretty up lately. It’s hard not to feel that way on steroids. Those are starting to diminish in my system, but I’m also feeling good – I went to the gym today and actually did some exercise. I’m pondering getting back on my bike (but need to find a riding buddy, per nurse’s instructions, to make sure all is well my first few times out). I’ve had so many great coffee and lunch dates and went to a great reading last night.

Tonight, J and I saw Welcome to Me, which I hadn’t heard a thing about but the showtime was convenient, and I’m a fan of the Kristen Wiig brand. From the moment it started I knew it was going to be a gripping, hard, fascinating watch, in the vein of Louie or Curb Your Enthusiasm. It was the perfect movie for someone like me, who seems to have fallen into a bit of blog-megalomania brought on by this equation: grave illness + loads of free time + access to wordpress. I really loved the film, and the soundtrack was great, and it should win every award that still means something.

I still have my daily cry. Today it came while having coffee with my friend A. I just get this welling up of gratitude in the middle of conversations sometimes, even if I’m not talking at the moment or thinking about my situation. Years ago, when I was dabbling in choreography (that lasted like five minutes – by far it is the most demanding and challenging of all the lively arts), I bought a book of essays by the modern dance pioneer Erick Hawkins, called The Body Is A Clear Place. I still love that title, but I think I threw the book across the room when I read his phrase, “the everythingness of everything and every thing.” Bah! Still, I think that’s exactly what afflicts me these days. The everythingness. Of everything. And every thing. (Damnit, Erick Hawkins. You win.)

Getting through these moments of sudden sadness gets easier, of course. People who care about you are very understanding when they happen, and it’s good if they don’t let you dwell in it for too long. Tonight, though, I remembered this performance Laetitia Sadier (formerly of Stereolab) gave, of a song that I learned from YouTube comments is about the suicide of her sister.

I remember watching it a few years ago and being stunned by it, and by how she was able to almost break down and then move on. If I write on through this, stubbornly (I do stubborn pretty well), unceasingly, it will get easier to handle.

My brain is still racing, even on the last day of 1.5 steroid pills. Tomorrow I’m down to one a day until my MRI next week! Yay! The nurse called to give me instructions for the MRI. I show up at the cancer center at 9. I need to not have any metal in my body since the last MRI. (Pretty sure that is a no.) I DO NOT HAVE TO FAST. I DON’T NEED TO FAST. THIS WILL BE A BREEZE.

And the best thing, near-instant gratification. I’ll have the MRI, go for a lunch break, and come back at 1 pm with J, for a word with Dr. P. Of course, that word will include my marching orders and tell me how soon I’m getting those gamma rays pointed at my brain. I’m starting to worry about this old brain. I know the risk of the surgery is quite minimal, but what if all this writing suddenly… leaves me? I find myself composing even as I’m walking down the street, right now. What if I forget a third of my vocabulary because the laser goes astray? Or what if I don’t like The Mekons anymore, post-op? (Impossible.)

I think I sorted out Young J’s allergy agony this morning with some eye drops, and found a good allergist we’ll return to after the crisis for a comprehensive set of tests. I was happy to spend the morning with Young J. I got him a doughnut after the doctor’s visit. I am proud to say I did not also get myself a doughnut.

Earlier, while we’d waited for the (woman) doctor to see him, and he shifted around, nervous about the possibility of getting a shot, out of the blue he told me he prefers women doctors. He hasn’t had much experience with male doctors (except for his male dentist, who sings to him). He remembered the name Elizabeth Blackwell, and he actually said, “We owe her a debt of gratitude!” This kid. THIS KID.

Last night I stayed up irresponsibly late. Until almost 1 a.m. I’d taken my nighttime knockout trio (Ativan-Benadryl-melatonin) and then somehow forgot to just stop thinking. I’d had the best evening with the boys – J was out playing basketball and even though they got to bed late it didn’t really matter. I just loved them so hard. I wasn’t emotional at all, just present with them and soaking up their love.

Then it was time to sing their lullaby (I’ve tried and cannot find a more decent version on YouTube – this one is a little creepy). I’ve sung it thousands of times now. I started and I noticed that my voice was sounding much better now that I’m tapering off the steroids. Two weeks ago it cracked a lot and I was almost singing in a whisper. Last night, my brain played another nasty trick, though, and while I sang I got to thinking, “I should record this for the boys. Just in case. In case there comes a time when I can’t sing it to them anymore.” And then I couldn’t keep singing, I started crying right away and I had to tell the boys it was because I was so happy I’d gotten to spend the evening with them, and that I am finally feeling better and am so relieved.

I’m not averse to being overtaken by the enormity of what is happening to me. I accept it. It’s not all sarcasm and cynicism around here, especially at night, before bed, when I’m talking with J.

I just wish this particularly heartstring-yanking moment would have waited until my song was done, the anti-bad dream spray from the empty spray bottle was sprayed in every corner Young A instructed me to spray, and I’d closed their door for the night.