Inscribed and sealed

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.

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Across the street is an enchanting patch of trees from which deer occasionally emerge.
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We never knew there were so many shades of brown. We will eradicate them all from our walls, in time.
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We have a reminder of our Brooklyn lives every time we walk through the door. (We used cookie cutters to leave that message in the sidewalk for future generations, or at least until the sidewalk is torn up again.)

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…

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My desk surveys trees, squirrel drama, and rooftops.
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Farewell symphony

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The sun sets on our life in NYC

The kids have been at camp for over two weeks. I’d say we were in the sweet spot of kid-free time, but that would be a little bit of an exaggeration. For one, I can’t turn my head without looking right at a wall of shelving to be emptied and dismantled in advance of our big move at the end of this month. Also, after just one week at camp, Young J broke his elbow, and we had to spend 24 hours traveling up there, taking him to a doctor, shepherding him through his very first MRI (I was relieved to see an MRI of a broken elbow does not require you to be as far inside the tube as the brain scans I get, but I kept him company anyways, trying to distract him, but also not make him laugh too hard). While we thought we’d be bringing him home, it turns out that his camp has a lot of experience taking care of campers on the injured list, so we left him there. He has a cast now, covered with signatures, and a waterproof bag so he can at least get in the pool with his friends (but not go down the waterslide). Young J is learning a lot this summer, I imagine — just not the things he was hoping to learn, like archery, martial arts, and rope climbing. I’m just so glad he gets to spend time with his friends, rather than home with us, moping. Young A, judging from the photos that are posted daily, is having the summer of his life at camp.

J and I went away to the shore for a few days, where we did nothing more strenuous than log many hours sitting on the beach (inside our tent, of course) or hopping up and down in the surf. I wore my new swim tights, which weren’t too uncomfortably hot, even at midday. It felt strange not to have any children to look out for. I trained my eyes on the horizon, instead, and was rewarded with the fleeting sight of a couple of dolphins swimming by.

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House concerns

Three weeks from today, a truck loaded with our yet-to-be-packed belongings will pull up in front of our new home and begin unloading its contents. This feels surreal, too soon, disorienting. I should be out gulping up the last few days of city, but instead today I went to see my GP, Dr. S, for a final checkup. It felt strange and wrong to be saying goodbye to her. She has been my doctor ever since a severe bout of pneumonia landed me in the ER in October 2008, and I was sternly reprimanded by the ER doctor that I didn’t have a doctor of my own. I was mired in motherhood then, ignoring my own health in favor of caring for Young J. Dr. S was a godsend. When I first went to see her, I was still coughing so hard I would vomit every time. Using her complementary medicine training, she very casually suggested that I try a homeopathic remedy, alongside the antibiotics I was taking for the pneumonia. I found the pellets at my local pharmacy, and started putting a few under my tongue every few hours. Before I knew it, the vomiting had stopped.

Over the years Dr. S has seen me through several more pneumonias, as well as side effects from my cancer treatment. She donated to my bike ride in support of immunotherapy research. And last November, when I feared I had developed yet another case of pneumonia, I managed to reach her on a weekend, a day before she was to run the New York City Marathon, to get a prescription for a chest x-ray. I don’t anticipate I’ll ever find another doctor like her.

I was nearly in tears when I left the office, and not only because it marks the end of my association with Dr. S. A few years ago, she took over the office formerly occupied by my kids’ pediatricians. She did a few renovations, but she never removed this light fixture in the bathroom, which I remember staring into when I was a bleary-eyed new mom, and the brief respite I got was when I went to use the bathroom.

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Goodbye, weird light

Every interaction feels fraught for me right now, every time I leave the house I may encounter someone I won’t be seeing again for a time, or maybe ever. Because of the nature of real estate transactions, we may be between two places towards the end of this month, and I’ll come back up here in late August for a checkup with Dr. P, which will mark a new experience for me — becoming a couch surfer in a city that was once my own. You don’t slough off twenty years of inhabiting a place so easily, even if you are moving back to your hometown. The entirety of so many of my life experiences have been lived in one city — career development and atrophy and rebirth, love and courtship rituals and marriage, childbirth and child rearing… all of this, and near death experiences too.

I’m looking for auspicious signs everywhere. Our hotel room number this week provided one. As did our housekeeper there, Michelle. We met in the hallway our first morning there. Within minutes, we had confided in each other as cancer survivors, and hugged.

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(My lucky number is avoided by some.)

In the time I have left, I’m looking for balance. I’m hoping not to get overwhelmed or overemotional, although both are fairly regular afflictions for me. Once the kids are back next week, they will be looking to me. I never moved anywhere as a kid. What do I offer them? I guess, this: Moving isn’t easy. We will be sad, but we will also be happy. Where we are moving, it will be harder to get good pizza and bagels. It will be easier to go swimming, and to see stars in the sky. There are people we love and will miss who love us and will miss us here… and people we love and who love us and who will welcome us there.

It’s a start.

A new one

A new season began. It had any number of false starts, and there were many points where it seemed prudent to put the winter boots away, only for them to be needed again. Spring is now officially confirmed. First I browsed the flowers at the botanical garden, and then, finally, got around to planting my own.

Thoughts of my father come and go. When they come, they are sometimes sharp and painful, other times the gentler nudges of saudade.

His presence keeps making itself felt. For a translation job I finished this week, I worked on an essay about Ingmar Bergman, Pa’s favorite director. As it happened, there was an entire paragraph in the text explaining how it was that Bergman came to have such a great following among cinephiles in South America, and particularly Argentina, where my parents come from. (He and my mother attended retrospectives of Bergman films in Buenos Aires, and after the screening psychologists would help the audience parse the dense symbolism they’d seen.) My jaw dropped as I read this, and I wanted to pick up the phone right away to tell my father all about it.

We are going through different cycles of saudade and sadness as we prepare to say goodbye to our beloved Brooklyn (and New York) this summer.

Seventy boxes, just a start

J and I have decided to move our family to the Washington DC area, where I grew up. This is not an easy decision. I have lived in New York for twenty years, and J has never lived outside the state of New York in his life. But the move offers everyone exciting opportunities, so we are making it.

The process of moving is destabilizing and stressful, but provides brief moments of happy discovery. I celebrated my twentieth “Appleversary” shortly after my father died in February — two decades living in New York City. So it was fitting to find the other night, in a folder labeled “Floor Plans,” this sketch of my very first New York apartment. My employer at the time, Columbia, offered me subsidized housing in one of the many apartment buildings they own in the campus area. I had to choose between two apartments within a short time span, and I was in New Orleans at a conference when my turn came up. My father took the train up to New York for the day, visited both apartments, and produced this floorplan of the apartment he thought I should take.

Of course, he included the measurements of the other apartment, in different color ink, so I wouldn’t feel shortchanged at not having been able to see it.

Pa chose well — it was a lovely apartment and I spent five very happy years there before moving in with J. Every evening I had a front row seat to sunset over the Hudson River. In 2000, I watched from my window as a historic parade of tall ships sailed up and back from the George Washington Bridge. I did not feel the oppressive sense of living in a cramped space that is the stereotype of most New York City apartments, especially the first one that you live in when you arrive as a young person. I bypassed that struggle. I had ten foot long windows in both rooms. I could see the river, and across it, the mainland of the U.S. (lest I forget where I’d come from). Now, as my time in New York winds down to a matter of weeks or months, the past twenty years flood forth, in memories and in boxes.

In preparation for selling our apartment, we had painters in for a week. After a few days of attempting to live here while the painting took place, we decamped — first to J’s parents’ house, and then to friends. I was between assignments, so I was able to devote my full attention to a memoir called Educated, by Tara Westover. She tells a gripping story of her fundamentalist family’s life on an Idaho mountaintop. (I won’t spoil it for you — you simply must read it.)

Her father is a central figure, and as I sat on my friend’s couch on a sunny afternoon, waiting for the dust to literally settle in my home, I came across this passage which took my breath away:

Alongside all of the love that I have expressed in my memories of my father is the fact that he was a complicated person — the most interesting people are. Our relationship wasn’t consistently harmonious — because good ones often aren’t.

For me, the idea of moving back to my hometown was, at first, impossible to conceive. It even angered me. New York was my dream and my goal, as early as age ten. Dreams change, of course, especially when children are involved. When we began discussing our move with the kids, Young J (age 11) said, “You know, I’ve never really seen myself as a city person.” It was a stunning expression of self-awareness on his part, but not at all a surprise. He’s long dreamed of living in a house “with stairs inside it,” something which would never be possible for us here in Brooklyn. He adores the country, by which he means anywhere with greenery that you can go a day or longer without hearing a siren. Young A (8) is less enthusiastic, because he’ll miss beloved friends and teachers, as well as the NYC subway, which he deems superior to that of Washington’s, because it is older and dirtier (a child after my own heart).

Moving back home seems unthinkable without Pa there to obsess over every single detail of our home purchase, the traffic volume in our new neighborhood, or any number of minutiae I can’t even think of which he would have sent numerous emails or made any number of calls to us to discuss. Moving to a house without Pa to scrutinize its floor plan seems impossibly sad.

A few weeks ago when we were visiting my mom, I saw my grandfather’s old writing desk in the corner of her cluttered dining room, finally unburdened of the boxes that had been sitting on top of it for years. I realized that I wanted that desk for my own, and I could never have it in our current apartment. That was a crucial turning point for me. It pitted NYC versus a longed-for connection to my past — and unlike prior rounds of the same battle, I wasn’t all that sure that the city should win this time.

I also found myself, late one night, hard at work on a floor plan of Mom’s apartment, trying to figure out what size of couch might work best in her living room. I used my father’s graph paper and his father’s ruler.

Here but not here

It is not that he won’t be there, I’ve come to realize. It’s that he will be there to guide my hand when I need his help. And maybe now it is even easier to let him.

Making Me Understand: “Souffles,” by Birago Diop

(Making Me Understand is an occasional blog feature where I analyze, in brief or at length, what a particular work of art or artist means to me right now.)

When I was in junior high, I hated school. I hated being in my skin. I reached my current height of six feet right around eighth grade. It was not a source of pride.

But beginning in seventh grade, I had a Happy Place, and that place was French class. I loved my textbook and its little cartoons and dialogues and photos of Paris and the countryside. The language came to me almost effortlessly. And I loved the poems in the textbook, which we could memorize and declaim in class for extra credit.

My textbook in eighth or ninth grade, Scènes et Séjours, included a poem somewhere in the middle of the book that spoke to me with its incantatory vibe and authoritative tone. I was just starting to discover poetry, and this one really intrigued me.

There was no biographical note about the author. There was just the poem, and my assumption that the author came from Francophone Africa. I loved the poem so much, I not only memorized it — I also, at the end of the school year, bought my copy of the textbook.  I have toted it around with me ever since, even to college, where as a French and Italian major, I mostly had no actual textbooks, just small, obscenely expensive imported paperbacks of novels to read, or sheaves of photocopied poetry or plays or literary criticism hand-selected by my professors.

I took the textbook out the other day when the refrain of the poem refused to leave my head and I couldn’t seem to find a standard version of the poem online:

An English version (one of many that can be found online) is here.

Birago Diop was a Senegalese writer, veterinarian, and diplomat, whose childhood was steeped in folktales told by griots. As a writer, he became affiliated with the Négritude movement.

One analysis of this poem emphasizes its source in Animism, the belief that there are souls not only in living things, but in all things — and that there is no separation between the spiritual and material worlds.

No surprise, then, that this poem has resurfaced precisely now, bobbing like a cork in my mind as I begin to make my way out of the initial shock of my father’s death and into the unfamiliar process of situating this loss within everyday life.

Since losing my father, many things have been revealed to me about the way the departed make their presence known in the world. Not just the Velcro I spoke of in my previous post, and not just the glimpses of the many other things my father loved popping up where I least expect them. 

I find I have new ways to interact with people I may have known for a long time, who dealt with the loss of a parent before I did, and who now welcome me to the (admittedly sad) club. We can talk about things, find points of intersection, and muse about how well our fathers might have gotten along.

There have also been unexpected communications from beyond, mediated by people my father might not even have bothered to speak to while he was alive. This week, I found myself unexpectedly in receipt of such a message from my father, transcribed by someone who was a stranger to him, someone I have known casually for a long time, someone for whom communication with the dead is a normal occurrence.

(I would have laughed if he’d ever called me Princess)

I wanted to believe it was a put-on, and “Princess” nearly threw me off. Who can wrap their head around their dead father reaching out in this way, and in such unfamiliar handwriting?

What the person who mediated this communication did not know was that this particular week,as I headed in for my next brain MRI, I’d really need that sort of reassurance, whether or not it was actually from my dad. My anxiety this time was tempered by grief, but it was still there. My continued health is not a foregone conclusion. But I have outlived my father, which at several points might have been a less certain thing. I wouldn’t say this gives me a sense of comfort, really. It is just one less thing I have to dwell on.

Yesterday morning, I went for my scan. Today, I saw Nurse Practitioner Rajni, who told me right away that my MRI looked just fine. I told her my father was dead, which was news to her, because the last she’d heard, I was headed down to see him (and asking what to do about taking my medication that needs refrigerating). I narrated his final days for her, and each time I do this for someone feels like a bandage being ripped off, a wound reopening.

Being back in a medical setting was not easy, neither yesterday at the MRI facility (where I was largely okay, except for a brief moment when the technician placed my IV and my vein collapsed and she had to start over, and I thought of the many times in the hospital that my father was stuck), nor today, when Nelson, my favorite technician at Dr P’s office, consoled me as I cried while he took my vitals. He too was on the verge of tears, telling me about losing his father to cancer four years ago.

Last night before going to sleep, I realized this would be the first time I’d get scan results and not be able to call my dad to tell him. (I dissolved into tears, of course.) This morning as I was rushing to my appointment, I saw my father’s plaid shirt draped over a chair and knew I’d need to wear it.

My father’s shirt was there with me, getting the news. In the past three weeks, I have tuned in to things (choses), and also to beings (êtres). And I think I might have learned the lesson that this poem implanted in my head so long ago: Les morts ne sont pas morts.

We said goodbye

A now-unfillable cup

My father passed away just after midnight on February 1. He had turned 82 years old on January 30. We buried him today. Friends who have been through the loss of a parent told me to be alert to signs or messages from my departed dad. They were there, in the heron I spied by a pond as our procession drove by; in the traffic on the highway; and even in the completely random appearance at the cemetery of a piece of Velcro that stubbornly stuck to my glove (I had always associated my dad with Velcro because he is the one who first showed it to me, and he used it for many things).

I’ll have a lot more to say about my father in coming weeks. For now, I’ll just say, I miss you, Pa.

An unopened package in search of a project

Vigil

Worry doll

My father has been in the hospital for two weeks now. He suffered a sudden brain hemorrhage while out running errands two Sundays ago. He’s at a very good hospital and getting the best of care, but if anything the last two weeks have shown us how much better it is to not to have to be in a hospital at all. He’s suffered from a couple of hospital-acquired conditions which the doctors are still trying to resolve. His brain seems to be stabilizing, though, which provides some slight encouragement. Also, from the first day there, he has been perpetually concerned with making sure the bills are paid on time.

I feel grateful not to be the one who is sick, but that is most of what I feel grateful for at the moment. To say that my father is not fond of hospitals is a gross understatement. I hate that he is stuck in one for the time being. I am grateful my mom can be by his bedside most of the time, and my brothers can as well.

Living a couple hundred miles away is hard. I was there for a couple of days at the beginning, but ten days, and a million reversals of fortune, have now passed. I will take the bus there tomorrow, and spend the night in the reclining chair by his bedside, so my mom can have a break. I wish I could do more. It is so difficult, feeling pulled between two poles, between my daughter & mother roles.  I know I’m not the first to go through this, and I won’t be the last. I’m just the next in line.

When I was there last, I was casting about for something that my dad might like to fidget with, because his hands have been restless. I found this wooden figurine on his desk, and took it to the hospital with me. He wasn’t quite able to grasp it easily at that point, so I brought it back home with me.  It was been my worry doll, my reminder, my focal point. Sometimes the kids come and put it in a funny pose.

I’ll stay by my dad’s bedside tomorrow, and come Tuesday morning, I’ll get to be the first to greet him on his birthday. I can’t stay long, but I will be there, to give him a kiss, to show the video the kids made for him… and to wish him the healthy, long life that seems so far from his grasp right now.

Farewell, my friend

2018-01-13_11-Kent Island and Eastern Neck Island (and Chesapeake Bay Bridge), by Ken Lund on Flickr, licensed under Creative Commons
Kent Island and Eastern Neck Island (and Chesapeake Bay Bridge), by Ken Lund on Flickr, licensed under Creative Commons

Getting this message through the ether was the first moment I realized all of my typing here might do something other than help me:

Deborah, your blog is like a parallel life to mine at the moment – I feel stronger knowing that someone else is experiencing exactly the same side effects and riding the exact same emotional roller coaster as I am. Wishing you continued strength

This was my introduction to someone who would become my melanoma pen pal. We were contending with the same disease, and receiving the same treatment. But the similarities ended there. She had been diagnosed with melanoma at the age of fifteen — a mole on her temple. She had it removed surgically, and there was nothing else… for twenty years. It returned with a vengeance, and she had surgery to remove a parotid gland and lymph nodes. Tumors kept appearing. She had been treated with immunotherapy, as I had been. And, at the time she wrote to me, she had begun the same targeted therapy combination that I take — and was the very first person in her country to be taking them.

At the time she got in touch with me, I had been through a lot of medical and personal drama — being declared NED, and then, 24 hours later, finding out my brain was riddled with tumors. Getting a job for the first time in years, and having to leave it to tend to my suddenly declining health. I had found a therapist to talk to every couple of weeks, but didn’t have any support group I could participate in. This has been an issue I have contended with ever since my melanoma metastasized and I underwent treatments that, while absolutely mainstream, fell outside societally accepted norms of cancer treatment, simply because the general public hadn’t heard much about them yet. I was referred to places such as Gilda’s Club, but every time I picked up the phone to call them, I imagined myself walking into a support group meeting, looking the picture of health with all of my hair and no nausea… and I couldn’t do it. It seemed analogous to walking into a Weight Watchers meeting when you desperately need to lose twenty pounds, and having everyone else glare at you because they have further to go. I have since found a melanoma community on Facebook that provides the steady stream of support and treatment data points (and more than occasional heartbreak), but I didn’t know about it then.

I was so relieved to have a pen pal who echoed the very same things I was feeling:

I find that people say that I am very brave — it’s not being brave, it’s just that you really don’t have any other choice but to keep going … I am no different from anyone else, there are days that I just freeze with sheer panic and terror, other days I am angry at the stupid things people say to me, or if I’m honest, the fact that I just want to be like other people my age… with no worries.

We struck up a friendship, and we’d write each other every few months. I’d worry when I didn’t hear from her, and she was not on social media so I couldn’t passively check in. We shared vacation photos and news of our families. She was a doting aunt to two nieces. She sent in a donation for our bike ride when we were raising funds for cancer immunotherapy research.

My friend had a hard time with the side effects of our treatment, though, including one of the most common ones — fevers that would land her in the hospital every so often, and taking medication breaks until things stabilized. I fervently hope someday there will be a scientific reason for how and why these side effects happen (or, in my case, do not), and better ways to control them when they do happen.

Things took a turn for the worse for my friend in May 2017, and she was referred to the palliative team. After this point, there were many ups and downs for her, and a number of hospitalizations. I received an email from her last August, in which she reported good scan results, and was excited to be going home from the hospital.

I didn’t hear from her again. I felt strongly that something was very wrong, and emailed her on November 16, a brief note to send my love and tell her I wished her well. From the country stats I get through WordPress, I could tell she hadn’t been checking in on my blog. I periodically searched for notices online, and last night I found one: She died on November 17.

I have been at this cancer thing for a while now — anniversary hoarder that I am, I noticed a few weeks ago that April will mark five years since my initial diagnosis. You would think I’d be used to losing people, but it doesn’t work that way. Every loss is a knife. Every loss is a chasm opening into the center of the earth. On the Facebook group, which has over two thousand members, not a week goes by without the death of a member or a spouse or a child.

In a time of miracle treatments, and success stories (so far) like mine, in a time of falling cancer mortality, and even in a time where an article can be published that uses the “c” word in the headline, it is very tempting to focus on the positive, especially if you are the one with cancer, or your loved one is. And then yet another wrenching loss comes along to remind you that this is not a good business for anyone to be involved in.

I miss you, my friend. Our beastly disease struck you so early, let you live two decades with the illusion that you might outrun it, and then ended your life in such a merciless way. I hope where you are it is sunny and a lot like Italy… a place that you and I both love. Xoxo