I had my first followup appointment with the new team today, in the new place. The good news is, I didn’t need to drive to Baltimore. The bad news is, everything about the new place was aggravating and made no sense to me.
At NYU, there was very much the sense of “one stop shopping.” When I showed up for a checkup, I’d have my bloodwork done in the same office on the same day, and by the time Dr P or a nurse practitioner came in, they had the blood analyzed already. When I needed to schedule additional appointments or scans, the staff in the office knew exactly when I needed to come in and were ready with a selection of dates for me.
Today was nothing like that. From the morning stress of the drive, to the overpriced parking lot, to having to hike four buildings over at the end of my second appointment in order to get to my car, everything seemed designed to frustrate and confound. The only thing remotely relaxing was the echocardiogram, when I got to lie down and have a pleasant chat about gardening with the tech, and hear my heart reassuringly go about its rhythmic swishing.
How I missed my simple subway commute and my well-traveled pathways and plans for lunch after! I even missed the little cubicle where the phlebotomist worked, because under my new regime, I’ll have to go to an external lab for my blood draws before going for checkups. I left the hospital today with a sheaf of orders for bloodwork to be used from now through next June, and the distinct feeling that none of this should be my problem.
Of course, as Roberto Benigni says, “I am lucky to even be here.” I know very well it could be otherwise. As usual I kept my head down through the long wait in the waiting room. As I told J. later, “There were so many cancer people there.” I seem to always be trying to put distance between myself and “them.” Even after all this time…
I never need to look very far for a reality check. I know someone going through much worse right now, in terms of her treatment and side effects and a general feeling that she isn’t supported. My heart goes out to her. I wish her to get to the stage where I am: able to complain about minor inconveniences, able to distance herself from the truly sick, able to sit in an examining room and talk about the distance between her last flare-up and today not in weeks or months, but years.
Generally, I wait to post here until I’ve gotten my scan results. (EDITED TO ADD: ALL IS OK!!) But I’m in a new universe as far as scans go, and Dr L (the new Dr P) hasn’t given me an inkling how results will be communicated to me (or if he did, I don’t remember), nor when I will receive them. Are carrier pigeons still in service? Have they been replaced by Harry Potter owls? (I haven’t actually read any HP, but Young J has said something or other about owls.) There is a portal. Maybe they come through the portal? I just want them to be good.
There are things I miss terribly about scan day in New York, and some of them will seem weird when I write them down. I usually had my scans early in the day, which meant I got to join the tide of commuters striding purposefully down my block to the subway. Since I had not been a daily subway commuter in many years, this was always kind of a treat for me. I’d catch a Q train to Union Square or a B to Broadway-Lafayette, transfer to the uptown 6, and then hike up the steep steps at 33rd and Park, anxious to see whether I could catch the crosstown bus over to the hospital. There was always breathlessness involved in this transit, but last November, in fact on this very day, I was going for both my scans while recovering from my fourth pneumonia since 2008. (I told a friend the other day that recurrent pneumonia was my training ground for dealing with melanoma.) I am pretty sure I sprang for a cab from the subway to the hospital last year. A cab all the way from Brooklyn was just too decadent for me.
Once I arrived at NYU Hospital, I’d check in at the desk and get a pager to wait for my turn to actually check in. This was less exciting than getting a pager at a restaurant, because I’m fasting on scan day, so when that pager went off, it did not mean a meal was at hand. I’d rush through my paperwork and get handed a bottle of berry-flavored Readi Cat. It always bothered me that I was given a complete, sealed bottle (never chilled, which I understand makes it slightly more palatable) and also a plastic cup filled to the brim with a starter serving. There was always a shortage of seats and places to put things, and opening the bottle meant putting the cup between my knees while undoing one of those foil seals with a plastic pull tab that never, ever work as intended. My instructions were to drink a cupful every ten minutes. But my own strategy with the Readi Cat was to just slam it down as quickly as possible, because I didn’t see the point of making the experience last longer than necessary.
This morning, after I checked in to the spacious waiting room (no pagers involved), medical assistant Katie came and handed me a Big Gulp-sized Styrofoam cup filled with chartreuse liquid.
I sure wasn’t going to make a fuss about not getting the Readi Cat I was expecting. The nurse said it was Crystal Light mixed with IV contrast solution. This kind of knocked me off my axis. Did this mean… Readi Cat was not the ONLY way? Is there a conspiracy at NYU to keep scans rooted in bygone tradition? Is Readi Cat really cheaper than Crystal Light? I was nervous that I’d been given the wrong thing, but Katie wasn’t around to ask, so I started drinking. And it wasn’t bad! (Remember, I’ve been fasting since last night.)
Katie showed up right when she said she would, as I was taking my final sips. I was clad in my usual scan day clothes (yoga pants, sports bra, t-shirt) so I didn’t need to put on a gown. Even better than that, I was not made to wait in a gowned waiting area for ages, subject to unwelcome views of men in gowns, dress socks and dress shoes (I have covered this subject here before). I followed Katie to get my IV placed. She took a good long time to find the vein (or maybe it just took a good long time to pop up), but that gave us a chance to chat, and I found out that barium sulfate is not exactly state-of-the-art for CT scans. She actually chuckled when she heard that I’d been given that to drink. My mind was blown!
I followed Katie to the machine, which was ready for me. It was a GE rather than a Siemens, but otherwise it all looked familiar. I knew there would be a moment that wouldn’t be familiar at all, and that was the recorded prompts to breathe and hold my breath. At NYU, those seem to have been locally recorded by some guy from Brooklyn, and they sounded like this:
Breed in, breed out / Breed in, hold ya breath / … Annnd BREED
Today the voice was still male, but much more standard. I didn’t have to breathe out. I didn’t have to BREED. Just in and hold and then breathe again. Furthermore, there were helpful indicators on the machine to demonstrate breathing and holding your breath:
I was out of there in just over an hour. Record time. Under an hour might have saved me some cash in terms of the parking garage, which I’ve decided is the thing I like least about my new scan regimen.
I was definitely in the grip of scanxiety the past few days. I wasn’t the easiest person for J and the boys to live with, and it put me in a pretty gloomy frame of mind when I met with Mom and my brothers last Saturday, to discuss what to write on my father’s headstone. (I mean, yes, J and I should probably shop for funeral plots… but my demise isn’t remotely imminent.) It took a long time to convince myself to get to sleep last night, and I was up at six this morning having Thoughts. One of those was a very belated and perhaps completely dim-witted realization that God was something people came up with so they wouldn’t feel like they were alone while having Thoughts. (Personally, I enjoy being alone with my Thoughts.)
I really missed the subway piece of scan day today. When you have used a particular mode of transportation in the context of life-and-death issues, you do get attached. I got in the car to drive to the facility, but before pulling out of the garage I queued up today’s scan anthem (scanthem?) (Around 6:25 is where Bono becomes aware of a Very Urgent Situation regarding some female fans who must be helped over the barrier in order to dance with him).
My need to listen to this particular song surfaced quite suddenly, out of nowhere I could easily locate– although hearing this Irish band also made me think of my departed melanoma compatriot. The first anniversary of her death was two days ago.
I confess to being one of those people who has jumped on the bandwagon of considering latter-day Bono and U2 to be utterly formulaic and ridiculous. But… this song existed before that bandwagon had ever been constructed. It accompanied my very short drive in the rising sun to my latest appointment with destiny in the precise way I needed it to. Mom was in the waiting room this morning, as a surprise before she headed to work. This is the new Scan Day Paradigm. It isn’t better or worse, it is different. I’ll get used to it.
Post-scan breaking of my fast was different too. My go-to used to be spanakopita and salad at the gyro shop by the hospital. But I walked out of the scan facility this morning at 8:40 a.m., and that didn’t sound appetizing in the least. I could have gone to the new cafe near my house and had an overpriced coffee and some quiche. (I was appropriately attired in athleisure, after all, like most of its patrons.) But something compelled me to come home. J was there, ready with a hug and a kiss and a lovely double cappuccino. I made an egg and some toast and sat by the kitchen window, content as a cat.
Oh: The gift wrap bandage at the end came in NYU purple:
I gave a shout-out in my heart to my old crew: Dr P, Nurse Practitioners K and R, whom I miss so much. And to Bakary, the phlebotomist, of blessed memory.
Four years ago, I launched this blog. I didn’t know where I was going with it, and I didn’t know much except that my life was in grave danger, a near or distant future not assured to me, I was too sick to eat, and I wasn’t in the mood to pray.
But I could write. I have always been able to write. I had no idea of the conditions under which I could write, and I feel as though I discovered them all: I wrote through near-starvation due to colitis brought on by immunotherapy, I wrote through elation at getting better, I wrote through fears of not continuing the treatment that almost killed me, and I wrote through the bewilderment of those two days in April 2015, when I went from my oncologist reporting “No Evidence of Disease” in my lungs, to having nine tumors in my brain, all within the space of twenty-four hours. My entire life since that point has been an attempt to either recapture or recover from the sheer adrenaline rush of those days. From time to time I’ll look up one of those posts and laugh (and cringe).
Steroids fueled a lot of my writing during illness. I have kept the vials of leftovers around, but I’m not crazy enough to use them recreationally, as a means of kicking my writing into high gear. The nonstop writing was the only positive part of steroid insanity. All the rest, the extreme irritability, the sleeplessness, the fact that only fried foods tasted right, the way my face ballooned to the size of a small planet — I don’t wish any of that back.
Four years ago I didn’t know I’d be sitting in a house I owned, a mile away from the house where I grew up, or that I’d be voting in the building that housed my elementary school, and my children would be sleeping in separate rooms at last. I didn’t know we’d have deer occasionally show up on the front lawn, and we’d drop everything to watch them. Four years ago (even one year ago), my father was still here. He was cheering me on. You can find his comments sprinkled liberally through the early posts here, full of praise and encouragement in all caps.
“I am surprised to see / that the ocean is still going on,” writes Anne Sexton in the opening to her marvelous poem, “Letter Written on a While Crossing Long Island Sound.” I haven’t written about that poem here (yet?) but you can hear her read it. (I just listened to it again and held my breath the whole time.) The last two lines are everything.
I am surprised to see I am still here, writing on and on even without the aid of steroids, and even more surprised to find you reading this blog. Thanks. I’m glad you’re here. I’m glad I still am.
Murder has been the order of the day. Last Saturday, eleven of my fellow Jews were gunned down as they prayed. Last week, two elderly black people were shot in a supermarket parking lot, because a white man was not able to get in to a nearby church, but he was able to get a gun and point it at them for looking different than he did.
This is me, circa 1995, angry about a government shutdown. But this image resurfaces these days because I’m still as angry as I look there. About Congress’ continued, protracted failure to enact gun laws that could save my kids from growing up in fear, practicing lockdown drills, being handed lollipops to keep them quiet as a deranged (white, male) shooter stalks them in the hallway.
This, of course, is not to turn a blind eye to the fact that hate is universal. My Facebook memory from last year on this date expresses sorrow over the day’s events. I was horrified to find that I couldn’t even remember which ghastly massacre had occurred until I looked it up. It is obvious that eradicating this type of hate will take more than bulletproof legislation. But we need to start somewhere. I’ll be voting next week. (At my former elementary school.)
Last Saturday night I tossed and turned. It was difficult to get to sleep after the day’s events. When I was finally about to drift off, I suddenly heard my father’s voice. It wasn’t saying anything particularly meaningful. It was just there, in my ear, accompanied by his habitual throat clearing. Maybe he was clearing his throat in order to greet the new souls who were lost that day. It was good to hear his voice again, and it made me sad. (My father spoke English with an accent that I have never been able to replicate, and I’m very good at accents.)
A few weeks ago we were driving by my childhood home, which is a mile from our new house. I had decided I wouldn’t be passing it on a regular basis, since the azalea bushes that lined the walk are now gone, as are most of the trees I knew. On this particular day, there were renovations going on, apparently in the kitchen, which my father had renovated himself. So we got one last look at his handiwork as we drove by that day, and saw the cabinets he had installed heaped in the driveway. (At least the garage he built is still standing.)
We’re working hard to make progress on our new house. Every day brings a new wrinkle or near-calamity. The contractor was here for a walkthrough and noticed a leak sagging the drywall on the living room ceiling. Now we need to retile our shower. This morning, a tree expert walked us through our backyard and demystified our trees for us. Black cherry, mulberry, sassafras, gum. They seem to like to grow in community, so I had assumed they were all the same thing. “Birds must have planted em,” the tree guy said. The one that seems to be leaning precariously towards our neighbor’s fence turns out to be fine. But another tree, a black cherry, needs to come down. We’re trying to decide between using it as firewood or having them split it so that J., who has always dreamed of taking up woodworking, can try to make us a new coffee table.
I tried all my usual self-improvement techniques this month (giving up sugar, taking up running) but now, at the tail end of the month, it has all fallen by the wayside. November has typically been a month where I try to reignite my writing practice, but I’m almost afraid to make any sort of commitment to myself. It would certainly help to pass the time: I have some translation work coming up, but not until the end of November. I will meet my new dermatologist this Friday, the same one who treated my father. I have a CT scan on November 19th, the first in a new location, and then an MRI in December. Today’s date squares with the time when the scanxiety kicks in, and the dread, and the sense that something may not be right.
But it’s also Halloween today, so I should rehearse merriment in advance of taking the kids out tonight. Here’s something to crack a grim little smile at.
(Making Me Understand is an occasional blog feature where I analyze, in brief or at length, what a particular work of art or an artist means to me right now.)
I wrote this post months ago. It fell victim to a slip of the finger in my mobile WordPress app and got deleted. So I’m finally getting back to rewriting it now. Sorry for the delay!
The primary musical landscape in my home growing up consisted of Classical sprinkled with some Folk (Pete Seeger), Jazz (Louis Armstrong), and Spirituals (Paul Robeson). There was exactly one Beatles record in my parents’ collection, which they bought when they lived in Israel in the early Sixties and wanted to know what all the fuss was about.
However, my parents were not the only musical influencers in my home. I had two older brothers, quite a bit older. One had musical tastes that were less mainstream, which led to my listening to King Crimson and Brian Eno at age five. (The latter album has become one of my favorites. The cover art of the former continues to terrify me.) The other brother had tastes that tended towards classic rock. There was a lot of Beatles, Rolling Stones, The Who and representing the US, Lynyrd Skynyrd, Jackson Browne, and The Beach Boys.
I got a hand-me-down clock radio in fourth grade, and at that point was able to determine my own musical destiny. I started with the classic rock station (which, I recall with horror now as a parent, had Howard Stern as its morning drive time DJ). I veered towards Top 40 towards the end of elementary school as a means of having common ground with my classmates. In junior high, a time of Peak Alienation during which I spent three mostly miserable years in private school, I vacillated between Top 40 and a station that played “Urban Contemporary” (which encompassed everything from Luther Vandross to rap). An influential friend taped me a Boomtown Rats album, and I began to gravitate towards music from the UK, helped along by the weekly radio broadcast, Rock Over London.
In tenth grade, I switched back to public school. I had to start from scratch making friends and carving out a place for myself. My brothers and their musical influence were long gone from the house. Tell me, what did you do on your fifteenth birthday? On mine, I wound up going out with my parents that evening to see an important documentary about the Vilna ghetto. On the way home, we made a stop at a hospital to check whether a friend of a friend had died of cancer. When we got home, I was beside myself with frustration. I knew I needed to do something drastic. Of course, I headed straight to my radio. At school, I had heard about another station that I had been meaning to check out, so I tuned it in and never switched it back again. (“I think they’re playing John Lennon,” reads the journal entry in which I recorded the fateful turn of the dial.)
From then on, my pace of music discovery quickened, and my meager income from part-time and summer jobs was immediately absorbed by record purchases. As a budding poet, I was attracted to music with compelling lyrics, and one of the best discoveries I made during that time was Robyn Hitchcock.
Okay, so I was also a teenage girl, ergo not impervious to the effects of his deep English growl and that dark, mysterious glower. I didn’t realize then that I’d be entering into a lifelong relationship with his music.
A ticket to a Robyn Hitchcock concert guarantees the bearer more than just excellent live renditions of his songs. He is just as famous for his between-song patter, which he elevates to the level of what looks like improvised storytelling meets stream of consciousness meets acid flashbacks. Even his communication with the person at the mixing board is conducted at this level. Hitchcock is a born showman, but not in the way that one might say the same thing about Danny Kaye.
I have probably enjoyed forty Robyn Hitchcock shows over the years, possibly more than that. I’m always hoping the arc of his next tour will swing by me. He takes requests for his shows today via Facebook, but many years before that was an option, he’d either do it from the stage or when running into fans outside the venue. I still remember a much younger RH outside of Gaston Hall at Georgetown University, walking away from the building with his girlfriend. My friend J and I greeted him and he said with a huge smile, “Got any requests?”
Here, then, is a brief and incomplete history of my life punctuated by Robyn Hitchcock:
I see him for the first time, performing with his band, The Egyptians, in D.C. I am transfixed.
I see him while living in Michigan after grad school, and most vividly remember a show at the Magic Stick in Detroit. I went alone, as I sometimes did because I didn’t have many friends. I was feeling smug that night, though, because I had just interviewed for a job in NYC, and it seemed to me it wouldn’t be long before I was living there. (I was wrong, it took me another nine months to get there.) This was the first time I saw orange traffic cones with Robyn’s drawings on them for sale at one of his gigs. They cost $20. I told the person at the merch table that was ridiculous. “No, it’s not!” they sing-songed. (Yes, I kind of wish I’d bought one now.)
A feature length film of Hitchcock performing in an empty storefront on 14th Street in Manhattan, directed by Jonathan Demme, was released a few weeks after I moved to NYC. It’s streamable, so you must watch it. I have a copy on VHS I’m hoping to eventually get to watch again. My friend T heard about a “secret” show in conjunction with the film release at the Mercury Lounge, so we showed up there at midnight, and got to see Robyn perform. At one point he decided to play “Electrolite” by R.E.M. Michael Stipe stood on stage to hold the lyric sheet for him. In that moment I knew there was no more exciting place on earth to be living, and I felt that way for twenty years. (Even though I have now left, I still feel that way.)
Very early on in my relationship with J, it was his birthday. We went to see a Robyn Hitchcock show to celebrate. I bought J a copy of one of his albums, Eye. He already had a copy. I already had a copy. Now we had three copies between us. When we moved in together, we eventually got rid of one of them. (The third had different cover art and we couldn’t decide between them.)
Fast forward to the early bleary-eyed days immediately following the birth of Young J. He was born in late December 2006. After a couple of days it was apparent I wasn’t getting anywhere with nursing. J went out to buy me a breast pump on Christmas Eve day. Robyn had recently released Olé! Tarantula with his group, the Venus 3. I cannot listen to that album without having very strong sense memory of listening to it while sitting on my bed, painfully attached to a pulsating breast pump, frantically trying to figure everything about motherhood out all at once.
I have small kids and get pneumonia and never sleep for a bunch of years. Probably missed a lot of Hitchcock shows during that time. Or I went to them but don’t remember them. I do buy 2009’s Goodnight Oslo. Actually, my calendar says I saw Robyn at the Bell House in Brooklyn that year. I think that was the show where he performed Eye in its entirety.
We reconvene with 2013. April 24: Melanoma surgery and sentinel lymph node biopsy. April 26: Robyn Hitchcock’s 60th Birthday Show at Webster Hall. I had bandages on my back. I had been given strong painkillers which didn’t help, so I weaned myself off of them in time to have one drink at the show. I stood with my back to the wall so no one could knock into me by mistake. I felt lucky to be alive, and lucky that Robyn was still alive and that we were in the same room. Robyn had just released Love From London. I got pathology results: Melanoma in transit.
Fall 2014: Lung metastasis. Lung biopsy. Collapsed lung. Radiation and immunotherapy treatment and treatment-induced colitis which stops the treatment. I had bought The Man Upstairs, released in August that year, and the song “Ferries” from that album forms the basis of one early post here. On November 10, we go to see Robyn perform at City Winery. This is the point where I am just starting to have to accept I am probably very sick. He plays “Trouble In Your Blood” and I feel he has written it just for me. I lie in bed for a few weeks, in agony and unable to eat. I daydream about being able to eat Brussels sprouts without pain. And I listen to The Man Upstairs over and over. By Thanksgiving I am miraculously better, but immunotherapy is no longer an option.
2015: I recover. I get a job. I get a clean bill of health for my lungs, and the very next day am diagnosed with almost a dozen brain tumors. I quit my job. I take high doses of dexamethasone which frankly made me a totally different person, one I’d be afraid to live with today. In the midst of the crisis, I decide that we need to take a safari tour of South Africa with Robyn Hitchcock that was being organized by an Australian travel agency. It was going to cost well over $7K per person, and the kids weren’t necessarily going to be welcome, but we were hoping to bring them anyways, and I somehow thought we could crowdfund this trip. I cut my steroids dosage just in time to realize that the whole endeavor would have been insane.
I’m not sure whether Robyn toured in 2015, but I made up for missing any dates in 2016, when I saw him perform three times. At the last, at City Winery in November, he played my request!
While my father was hospitalized for two weeks in early 2018, I could not stop listening to Robyn’s beautiful and elegiac song, “No, I Don’t Remember Guildford.” It deals with memory loss and death in a hospital. It somehow helped me, even though it also tormented me, since my father met the same fate. This recording (taken from the end credits of “Storefront Hitchcock”) is one of my favorites. In thinking about my own fascinating and complex father this year, I have also thought about Robyn’s relationship with his father, which is chronicled or mentioned in a number of his songs.
The only remarkable thing about this list is, I am sure every Robyn Hitchcock fan of long standing could compose their own.
Robyn Hitchcock is now sixty-five years old. I wish him a long and healthy life. I wish myself the same.
It’s almost Yom Kippur. The holiday starts tonight and ends tomorrow night, and in between we are expected to undertake a spiritual journey unaided by food (or, more worryingly, caffeine). Many people wish each other an “easy fast,” because it seems like the kind thing to do. Perhaps it is because I am a difficult person by nature, but the notion of it being easy chafes me, it seems to run counter to the entire purpose of fasting. I am hoping to have a meaningful fast… if I choose to even fast. My medical condition technically excludes me from the necessity of fasting, but I have to take my meds tomorrow. I have to fast for three hours to take the morning ones anyway. So perhaps I just keep it going.
I’ve started in medias res, as I often do. The fact is, I haven’t checked in here since our big move, so here is what you need to know in three pictures.
I met my new oncologist, Dr L, last week. In order to do this, I had to drive to Baltimore and see him in a new outpatient building that adjoins the hospital. The hospital being the same one where my father acquired a hospital infection and died just over seven months ago. I had to park in the same garage. It was triggering, to say the least, and I did cry when Dr L was getting my medical history and asked about my father. The new cancer center issues trackers to patients so their location in the building is always known. This is meant to eliminate the need to call people’s names loudly in waiting areas. I found the waiting area deserted, the tracker creepy, and just generally ached to be back at NYU among familiar people — Nelson, NPs Kathy and Rajni, Dr P…
Dr L and NP Megan were wonderful, and the pharmacist has been great at following up to make sure my prescriptions are transferred smoothly. I cannot fault them for not being my former caregivers. But I also came to a realization after that difficult visit to Johns Hopkins: I don’t actually need the new team to mean the same thing to me as the old team. Dr P and her team had to save my life. Twice. I went through some of the darkest experiences of my life while in their care, and they brought me to the place I am now, namely: in long-term remission, taking my meds on a modified dosage schedule, having scans less frequently than before. For Dr L to take on the role that Dr P did, then, would mean that my life would need saving once again– and I don’t want to be in that place, ever.
The other day Facebook reminded me it has been four years since my lung collapsed after a biopsy. Time accelerates and collapses in on itself and is an unreliable narrator. I still feel the dread and strangeness of those days four years ago on my skin. That was the year I decided Yom Kippur was optional, and opted out in favor of a day of reading, contemplation, and conceiving this blog, which will celebrate its fourth birthday (?!) in November.
I haven’t come to any useful conclusions about God in those four years, ever since I decided to be on hiatus from God and adjust my participation in any religious observance to be devoid of spirituality and register purely on the level of public singing. Do I still feel this way? I don’t know. I suppose I’m less angry now in terms of my personal circumstances, and more angry in terms of global circumstances. I acknowledge that something saved my bacon, but I am still not sure that something was God. I am grateful for Science, but I guess a faithful person who isn’t opposed to the notion of Science might easily turn that around and say, “AND WHO MAKES SCIENCE POSSIBLE?”
I’m going to wrap this up for now. There is a lot more to say, and I’m hoping that I’ll be less silent this year. For the moment, I’ll leave you with one more photo so you can situate where these half-baked thoughts are coming to you from…