One year gone

Pa, when he was very young

My father left us a year ago. He died just past midnight, one day past his 82nd birthday on January 30. This means we will have to clear a double hurdle as the anniversaries approach. And this is, of course, in addition to the fact that his date of death by the Jewish calendar has already passed. On that date, we unveiled his tombstone. We gathered at the cemetery in freezing (but thankfully sunny) air. We spent a few minutes there, tears freezing on our faces. We left stones behind as our calling cards, then repaired to my brother’s house and reminisced out of the elements. We will make further visits once winter recedes.

What remains for me, between now and February 1 is recalling, and trying not to recall, the way things ended for my father — hospital-acquired conditions taking him from bad to worse, conferences with medical professionals becoming ever more dire, and treatment options decreasing to only interventions we knew my father never would have wanted. To confront this anniversary is to remember all of these things, and more — our terrible bedside vigil, the monitors slowing, then ceasing their beeping. There was the drive my mother and I made, away from the hospital in the middle of the night, having left my father’s body to arrive at my parents’ home, every inch of which seemed ready for Pa’s imminent return. I still don’t know how I managed to make that drive. I remember we couldn’t seem to make ourselves go to sleep that night, because sleep seemed too much like an acknowledgment of what had just happened.

There have been many unusual, coincidental encounters with my father’s memory in the past year. When I went to catalog them in order to read them out at the unveiling of his gravestone, I winnowed down the list to seventeen instances. His presence persists, in my mind and in the physical world. I have made my peace with his appearance in the most random places, at the most random times, and in various forms. Twice he has appeared to me in the form of a strip of Velcro attaching itself to my clothes: the first time, at the funeral, and the second, on Father’s Day.

But some reminders of Pa are less random. Nearly every day, I drive past the street where my father pulled over his car for the last time, having experienced a brain hemorrhage while at the wheel. Every time I pass the spot, I marvel at what it must have taken for him to manage it. It’s off a fast road. He would have taken, I think, a left turn, which meant he probably waited for a signal. He then parked the car and got out so someone might see him. This is not the spot where my father began to die. It is the spot where he tried very hard to keep living.

I think about these last moments of my father out in the world, before the medical interventions that made his final two weeks intolerable, and ultimately ended his life. I think about these moments because I think I have experienced something like them: The slow realization that my lung had collapsed the day after my biopsy, and my determined journey by subway and bus to the ER. Or, later on, the morning I was losing my capacity for language, when I went through with a half day of work and a staff meeting and lunch with a friend before finally heading (again by public transportation) to the ER to discover my brain was riddled with tumors.

What these experiences have in common with my father’s, perhaps, is the relative calm with which we contended with them. In the face of near-certainty there was something mortally wrong with us, we each chose to put one foot in front of the other. If you can still walk, and talk semi-coherently, all is not lost. If you can joke about your situation while you’re in the midst of it, nothing can be all that wrong. I didn’t know how closely I held these beliefs before I got cancer, and I wouldn’t dare to say that this way of living is responsible for my survival. (My father, after all, did not survive.)

What it is, maybe, is a way of meeting the world, a way of being in the world. It takes stubbornness, and it takes resilience. My wish is to exhibit both of those traits even when my life is not at risk, because it is so good to have the confidence that comes along with it.

Pa is no longer here for me to talk this over with, and he won’t comment on this post. So, at a year’s distance from losing him, I’m reverse engineering his personality, seeing which components of it migrated to mine, and working out what parts of it I need to keep.

I’ll stop tomorrow

Domani smetto (I’ll stop tomorrow), Firenze, 2019

Hi from Italy! Welcome to Superb+Solid readers (and thanks for the shout-out, Todd)!

It was a week. The longest in memory. Hours with butt planted firmly in classroom chair, cycling between marveling at simply being there, and an almost unshakable sleepiness born of jet lag and mental fatigue and barely dispelled by break room Nespressi. I have pages and pages of notes. They will get reread eventually, in the dark night of the translator’s soul, once I am back home.

It wasn’t all classroom time, of course. There were all the walks to and from school, with quick, surreptitious snapshots of what I was seeing (like the one above), because I still, after all these years, have the obsession with not acting like a tourist.

There were new colleagues to get to know, to share with, to mine for useful information, to commiserate with, to have long heartfelt beer- and wine-fueled talks with. Everyone deserves to have a week like that every decade or so (if that’s your thing — maybe you want a weekly basketball game or book club, instead). I feel absolutely reset and reconnected to my former self, and maybe all it took was a plastic converter to change the voltage, an air ticket, and another language to slip on over my regular clothes.

Coming as it did so early in the calendar year, of course, this week away has also felt like another chance not to completely fuck things up this time around. In part, by refusing to be as hard on myself as the previous sentence would indicate. If you’re lucky, tectonic shifts don’t happen overnight… and I’m right in the middle of one.

As soon as the course had started, it had ended. Yesterday, I had a wonderful reunion with H., my roommate from my time in Florence 27 years ago. I went to her town and spent the day with her and her husband and their darling baby daughter who is learning to walk. C. cried when she first saw me, but eventually got used to me and answered all my questions with her favorite word (“No!”) and we read together and played ball and had some laughs. After lunch, we drove out to walk around the port of Pisa, at the mouth of the Arno, where I learned the Italian word for sailboat masts is actually trees.

Alberi al tramonto, Marina di Pisa

Last night, back in Florence, the friends I’m staying with (one of whom I also met in 1992) took me to a birthday party, where I ate and drank wonderful things and started losing my voice from all the talking I was doing and then, past midnight, heard one of the guests sing Brazilian songs so heart-stoppingly beautiful I had to keep my hand by my chest, just in case.

The bad cold that was looming all week has finally descended, so I’m laying low on my last day here. Thank you, Italy, for being the place I always imagine you are when I am far away. I promise to come back soon.

Alternate timeline

Time, light, and window were one, by Henk Sijgers on Flickr, licensed under Creative Commons
Time, light, and window were one, by Henk Sijgers on Flickr, licensed under Creative Commons

As the year draws to a close, I start to consider how unrecognizable my life is now from the life I had when the calendar was new: I lost a parent, and gained a new address. The magnitude of these changes haunts me on a daily basis, spiritually as well as literally. The house is still filled with boxes and we’re getting new windows installed today.

Back when I was seeing my therapist, M., and trying to get the hang of how to live with the now-permanent sword dangling above my head, she shared with me that one of the things to be negotiated is whether the amorphous timeline of that which you’d hoped to do “someday” might need to be concretized. Given an unknown, but finite, amount of time, what do you do differently?

Some of the things I’ve been hoping to do are longer term projects, but the easiest one to handle in the shorter term was, Travel. J and I and the kids have managed to take some memorable trips in the past few years. With our move this year, though, travel took a backseat to getting settled. At the same time, I’ve been trying to dig in and formalize my translation business. I’ve chosen a name for it and am in the planning stages for a website. The missing piece has been that I’ve been in need of is an opportunity for professional development to help me further my chosen career.

It came where I least expected, in an email last week from a translator friend who lives in Italy. She mentioned in passing a week-long translation course she’d be taking in Florence in a few weeks. Under normal circumstances, a person of indeterminate lifespan might have read this, remarked on it, and moved on. Being who I am now, I couldn’t. There is a lot I have let fall by the wayside or told myself could happen later, but this opportunity, one that had actual dates attached to it, could not. Within hours, I’d secured J’s blessing and used credit card points for a plane ticket and tracked down friends I could stay with. It wasn’t until today, when I finally made contact with the school offering the course in order to confirm my enrollment, that I could finally exhale and consider this opportunity a bona fide one.

And so it is that I will travel, early in the new year, to a place so beloved and familiar to me it feels like a spiritual home. A place I’ve traversed in dreams, and while waiting for brain MRIs to end. I won’t be playing tourist in a typical sense, since I’ll spend five consecutive days in a classroom. In that sense and in a few others it will be just like 1992. Since the 1990s is a temporal place of spiritual refuge for me, I am doubly excited. It is like going backwards at the same time as I move forward careerwise. From a physics standpoint, I guess that simultaneous backward and forward motion means I stay in the same place.

Getting to be here, though, by which I mean alive, and switching up time zones and languages for a little bit, is a gift beyond words.

Young J at 12

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twelve, by tup wanders on Flickr, licensed under Creative Commons

Twelve years ago today, I went through what I thought at the time was the experience that would bring me closest to what my own and birth and death would feel like: I gave birth to Young J. It was my first birth, and it was anomalous (I wandered around for a full week ready to deliver but not quite in actual labor, before my OB finally decided, “we need to finish this”). Once labor started, it was very fast indeed: three hours start to end. Because I missed the boat on an epidural, I was lucky to have a very good nurse coach me through it, one who eventually would be one of my midwives when I had Young A.

Today, Young J is taller than some short adults. He is handsome, funny, and smart. Although he has only been playing drums for a year, he shows great promise, and is more engaged by drumming than by any other instrument he has played. He was also a prime motivator during the upheaval of our move this summer. Unlike his younger brother, who is a city boy through and through, Young J had expressed longings for a quieter, more bucolic life since his earliest days. Our visits to family in the suburb we now inhabit were rapturous — he called it “the country.” He enjoys the lack of frequent sirens, having a yard, and being able to ride his bike around the block without supervision or the sense of imminent death.

When he began the year at his new school, Young J was excited about learning French (which wasn’t offered at his old school), and joining the band. While French has been a delight for him (oh, to be a fly on the wall this morning, when his class sang him a bonne anniversaire!), band was an unexpected mountain to be scaled. Young J had to relearn how to read music, something he hadn’t banked on since he chose percussion. But percussion includes bells and xylophone and any number of other instruments whose notes aren’t expressed on the page by x’s. He panicked after the first week or two, especially after one embarrassing day when he was laughed at by the rest of the band for not knowing how to read music. While we were on the road for Rosh Hashanah he decided it was too much stress and that he’d need to drop band. The plan was to have him take a year of private lessons, relearn how to read music, and try again next year for band.

Then he got back to school, saw his guidance counselor, and learned that he’d need to change his entire schedule around if he dropped out of band. And he liked all of his other classes. That night, we went to the music store, rented a bells kit, and music boot camp began. There was a quantity of wailing, tears, and gnashing of teeth (some of it ours).

That was September. In mid-November, I went to meet teachers for conferences. I approached the table where the band director was sitting and introduced myself as Young J’s mom. I got to see the band director’s face light up like a 150-watt bulb when I did. Not only had Young J been holding his own, he had risen above and rapidly become one of the most valuable members of the band, which has seventy students in it. His lessons have taught him technical things which he then shares with his section-mates. He doesn’t goof around in the back of the room, like some of the other kids in percussion. And, he identifies so strongly with his section that he’s inviting all of them to his birthday party… even though one of them is a girl.

Young J has been teaching us for quite some time now, but it always thrills me to see what else I learn from him. In spite of all the medical drama I have experienced in the past five years, I still maintain that giving birth was more transformative, in terms of physical and spiritual experience. In my continuing refusal to let cancer have the last word, I don’t even rank it at any level close to the birthing experience. Certainly my illness has changed me in other ways. It has sharpened my sense of irony and outrage, but I don’t have warm fuzzy feelings about it. I don’t even own a sense of pride in how I have dealt with it — I continue to maintain that the cancer patient outsources everything about their disease to professionals, save the way they react to it. (Although therapists can — or should — play a role there.)

Thanks, Young J — for being the one to make an impact on my life that even cancer could not cancel out. I hope I can keep my sneaky fucking disease at bay long enough to see you grown and flown, bringing the light of your smile and the truth of your rhythms to the world. Happy birthday!

Meet the new place

Clover Black School, Halifax County 1, by David Hoffman on Flickr, licensed under Creative Commons

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.

Scan day paradigm, shifted

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.

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Down the hatch.

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:

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CT Scan, by John Tregoning on Flickr, licensed under Creative Commons

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:

20181119_094726.jpg 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 more years

LEGO Connect Four by Ayleen Dority on Fllckr, licensed under Creative Commons
LEGO Connect Four by Ayleen Dority on Fllckr, licensed under Creative Commons

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.