Mending

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pearls of the spider, by Peter Werkman (www.peterwerkman.nl), licensed under Creative Commons

We drove back home today, hoping to beat tomorrow’s traffic armageddon. We succeeded. We even discovered a gem of a Chinese restaurant in a place we never expected to, far down at the very mouth of the New Jersey Turnpike. The kids found their favorite dishes (interpreted tastily) and J and I shared some chicken in garlic sauce, marked as “spicy” on the overly cautious menu, but in actuality just flavorful. Even Young J tried some. At the end of the meal, we received rainbow Jell-o, canned pineapple chunks, and fortune cookies (unwrapped and soggy from the pineapple juice). J had just been waxing nostalgic for the pineapple chunks at the Chinese restaurants of his youth, so it felt like a sign. Everything feels like a sign. Even signs!

Young J’s fortune promised he’d be having adventures soon, to which he responded, tongue in cheek, “I just had an adventure! I got locked in the bathroom for a second!” His sense of humor has exploded lately and not a day goes by now he doesn’t crack us up. Young A discovered he loves Jell-o – a wonder, because the rest of us hate it.

The drive wasn’t bad. I wasn’t as scared of my body as I had been in previous days. Things felt more predictable. And best of all, for the first time in weeks I didn’t feel beleaguered by the kids. They were well-behaved, as they generally are in the car (until we hit a wall of traffic, which didn’t really happen until almost the end of our trip today). There was garden-variety whining from Young A, sure, but it didn’t feel unmanageable to me. It didn’t make my brain scream. It didn’t make me want to retreat into my cave.

Young A started agitating for an outing to the schoolyard when we arrived home. He’d slept a long nap in the car, so it seemed prudent to let him burn off some steam. I wasn’t sure how I’d do taking him solo, but I also felt like being outside after so many cooped up hours. He scooted along and was scrupulous about stopping well before the end of the sidewalk. He’d stop, turn around, and flash me a thumbs-up with accompanying toothy grin. At every corner. Could this sweetheart be the kid I’d been avoiding all these weeks? What on earth was wrong with me?!

My legs felt different too. Other than moving easily inside jeans that had formerly been constricting, I felt with each step as though I were repairing some damage. During my ordeal, part of what kept me so close to my bed was pain in my groin and pelvis. I’d get out of bed and it actually hurt to do so. Not having adequate fuel didn’t help matters. So my outing with Young A felt therapeutic. He scooted around the track lap after lap, climbed the play structure, even made a new friend. For my part, I stayed present and didn’t keep looking at my phone. It felt so easy and so clear. I’m learning to be a good and functional parent again.

When I got home a new book of translations of Paul Celan’s later poems was waiting for me, as well as a lovely get well card and warm socks from a person I’ve known for years, not very well, who’s been touched by my words here. I had a call from a cousin overseas. Everything is healing me.

(Below, one of my favorite Celan poems, newly translated by Pierre Joris.)

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Aftermath

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EAT, by Rhett Maxwell on Flickr, licensed under Creative Commons

It happened. The glorious eating. It was as beautiful and perfect as I’d hoped. My uncle and his wife were our extremely gracious hosts. Before dinner, I ate crackers, occasionally making a bold move and dipping them in hummus (no prob). When the buffet was opened, I was busy cutting up Young A’s plate o’ pure protein (turkey, meatballs, salmon), so I didn’t quite get to storm the table as I’d planned. By the time I got there, cousin I’s exquisite sauteed green beans (a vegetable which I’d been given clearance to have), were nearly gone so I had to jump the queue to snag some. I took turkey, mashed potatoes, some bread, plain sweet potato (or… was it squash?), and in a weak nod to my actual instructions from the nutritionist, a dollop of cranberry sauce – which as it turned out was quite fancy and citrusy, not the gelatinous blob from a can that had been officially sanctioned.

I was on a high because I was seeing so many family members I hadn’t seen in ages – so many of whom have spent the past year coping with their own great trials, and many of whom have been reading along here. I got hugged up and caught up and it was fabulous. Only once got teary (no, it wasn’t while eating).

I moved through rooms and various groupings of family before settling on the living room to eat my prized selections. I had sent an email several days earlier to my relatives I knew I’d be seeing, asking them to please not question me about what I would or wouldn’t be able to eat. That was before The Great Correction happened, though. I hadn’t anticipated being able to eat an entire plate of food. I hadn’t anticipated going for seconds, and then pumpkin pie and my mom’s cheesecake, and then seconds on that. Eventually, people started making fun of me and the way I was eating. I didn’t mind a bit. It was the best Thanksgiving meal of my life and I won’t soon forget it.

I couldn’t go to bed right away, which was just as well because the kids didn’t go down until nearly 10. After they were in bed we gathered around my parents’ table to talk over the evening and fill each other in on stories we hadn’t heard. I ate some canned pears. I stayed up another two hours, making sure my body wasn’t going to go haywire on me. It was fine. I felt kind of stoned, I guess. A Thanksgiving meal after extended deprivation will do that to a person.

Today was a slow beginning, two breakfasts, my requisite dose of steroid (which I’m starting to resent) and finally, just before lunchtime, we extracted ourselves to go for pizza and then for a walk down by the river. Yes, you heard me. Pizza. I ate some. It was good. It wasn’t THE BEST, but as I told the kids, pizza everywhere else exists to make us feel grateful for the pizza we have back home. (Today’s was my training pizza. I’m maybe not ready for the real thing.)

We walked down by the river, took in its powerful rapids, and since I kept falling behind I had time to reminisce about my trips there as a kid, the same age as mine are now. I felt grateful in my very DNA.

We stopped for donuts on the way back home.

It’s ON

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Thanksgiving, I mean. We’re on our way. I woke at 6, full of an unfamiliar energy that wasn’t born of discomfort. I flew into making PB&Js for our car trip, made myself some breakfast, and greeted the sleepyheads as they emerged confused from their room. Then I had a second breakfast – J’s fabulous challah French toast, which I’d been missing for three weeks. There was a gloom-and-doom weather forecast which seems to have lost its teeth. Life, I love you – all is groovy.

Dark matter

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Merging Galaxy Cluster Abell 520 http://hubblesite.org/newscenter/archive/releases/2012/10/image/a/format/large_web/

It’s the Hebrew month of Kislev. A month of miracles, the month of Chanukah. Also my birthday month, and Young J’s. So here are the minor miracles I count today. I got a haircut, one I was scheduled to have had three weeks ago. My hair, which I keep short, had nearly attained post-menopausal elderly lady style status so I was extra grateful to regain some youth. As I arrived, a friend was just vacating the chair, someone I didn’t know until I saw her yesterday had been dealing with her own week-long ordeal of pain from a wisdom tooth extraction. We swapped stories on what we’d been managing to eat.

Later on, I made my pilgrimage through filthy slush to the library, which I’d been trying to get to since Sunday.

But first, I went to the bagel shop for my first non-home-cooked meal in weeks. I had a sesame bagel with two eggs. Nowhere in the description or my order was the word cheese used, but I think they just knew to add some. My face must have that “I am starved for cheese” look to it. I was planning to eat half and save the rest for later, to make sure it was sitting well. Two bites in to the first half I realized this would not be remotely possible. There was only joy in this eating, no pain, no turmoil.

Still, I was in the grip of a mood swing that had begun while I was getting my haircut. I’d told my ordeal of the past weeks to my stylist (by way of explaining how my hair had come to look such a hot mess). I told it in my new way, wide-eyed, expressive but nearly expressionless, not even close to tears. But I’d finished talking about that, and was casting about for something else to say, and I told her about the marchers that filed past our building last night, a strong but hushed protest through the streets at 11 pm, a group perhaps 1500 strong (I wanted to believe it was that large). And that did it, I was crying, tears creeping down the cape. It took me a second to stop. “Mood swing, sorry,” I said, blaming the steroids.

After my two bites of bagel, a familiar voice greeted me. It was Rashad (not his real name), the super/caretaker/jack-of-all-trades at the former industrial mixed-use building where I take gym classes. It’s been three weeks since I was last there. His typical greeting is so effusive you practically need earplugs, and when I showed up over the summer, having radically chopped my hair short, his reaction was bar none the best one I’d heard (“SUGAR! HONEY! ICED! TEA!”).

Today, Rashad seemed to be on mute – something was not right. I told him a bit about what had been up with me. I asked him how he was. He didn’t want to say right away, but finally told me his dad just died. (Note: I have since learned it was his grandfather, who was like a dad to him.) I gave him a hug. He talked about how he couldn’t believe he was gone, it was sudden, he’d just come back to Brooklyn.

And it turned out it had been a robbery – his (grand)father had been counting his money and gotten jumped by some thugs. Went into a coma and never came out.

I gave him so many more hugs. What do you say? I didn’t know what to say, so I said that. I said I was angry to hear how it happened. I said that’s not how things are supposed to go. That it wasn’t fair. It’s not fair, he agreed.

I asked him if he writes. He brightened, slightly, and he said he did, he writes poems and songs. I told him that’s what has been getting me through, writing. I told him to please keep writing, all the way through. He said he would. There wasn’t much else to say.

There isn’t much else to say, except it feels like the world is cracking open from the core, and we are in need of a lot more miracles.

Simplicity and sadness and subterfuge

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These babies are the newest feature of my diet. The baby eats carrots now. I better get up and move away before I inhale the whole bowl…

Something as simple as cooked carrots needs to suffice as inspiration today, while the half (please – let it be more than half) of the country I agree with on the matter reels from Ferguson.

Nurse Practitioner R told me over the phone today I can drop down to 20mg on the prednisone. I’ll have to stay at that dose through the weekend, because of the holiday. But as of next Monday, if all is well, I will cut that in half. Progress. She wished me a happy holiday and I told her how grateful I am for her and the team. She said they were grateful for me. I’m not really sure how that works, unless I think of it as a business thanking a customer, like a dry cleaners giving out calendars or something. I don’t feel I bring a lot to the table, exactly, in my relationship with my cancer caregivers. Maybe they like my jokes?

Mid-morning I made a bowl of oatmeal, with almond milk and a banana. My every-two-hours meal schedule seems to be slipping as I’m able to intake more food per feeding. I ate about half of it, and all was still well. I watched “A Charlie Brown Thanksgiving” on YouTube, pre-screening it after 35 years to see if the kids will like it. So much violence. Cruelty. Is this the way to reveal to them the truth about the world? At least the music is nice. And Linus is a good egg.

I put in a call to the nutritionist to confess my tortellini from this morning (really just to get her OK for cheese). She called back and let me know she’d been in touch first with Nurse Practitioner K (busted) who said they really want to see two weeks of progress before I make any major changes. I can have a bit of cheddar or mozzarella, yes. I can have cooked carrots, sweet potatoes, asparagus tips (that seems too wasteful). No word on fruit so I guess canned peaches and pears will have to suffice. I can eat beef, also (but I have been saving the stew for the boys).

I hung up from the call feeling a little frustrated. I’m trusting my gut – literally – more than my doctors do. But they aren’t living in my body – I am. It’s hard to reconcile the strictures with the fact that I’m feeling so much better.

It was lunchtime (even though I’d been snacking on the oatmeal in between quick snoozes) so I put a pot of baby carrots to boil. But I was hungry right then. I reached in the fridge, intending to take out the baked chicken breast I made yesterday and fashion that into a plate, with pasta, and tamari, my seasoning mainstay, sprinkled on top.

Just then I saw a hamburger left from last week. “She said you could have beef,” snickered the small red-clad demon on my shoulder. I knew full well she meant something like a piece of stew beef, not a freaking hamburger. But before I knew what I was doing I’d popped it into the microwave, heated it, removed it and blotted away all of the fat pooled on the plate with a paper towel. I heated up the end of a baguette from last week. In a nod to my actual instructions, I cut the burger into very small bits before eating it. I ate toasted bread and burger bits for lunch, readers. It was delicious. This must remain our secret. The carrots were my dessert.

My problems with authority are long and well-documented. I didn’t imagine they’d be coming into play right now, but desperate times…

Angelic voices

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Arched, by Nicholas A. Tonelli on Flickr, licensed under Creative Commons

This morning J made me an egg – a whole, lovely, egg with yolk AND white – on a toasted English muffin. An Egg McMuffin, basically. It was the food of the gods. The crunch of the muffin, the good texture of a whole egg – so far superior to just the gelatinous whites I’ve been eating – and a hint of butter. How can it be that there will come a time when I take food for granted once again?

I poured some almond milk – by this point I am so many weeks removed from my morning cappuccino that I’m not even craving a hot beverage – and sipped it and then the timer rang for the tortellini for the kids’ lunch, which had been boiling on the stove. I knew there were a few extra in the pot, so I skimmed some off before adding the tomato sauce to them, and sat down for a little breakfast lagniappe. The moment the pasta casing yielded the creamy, salty, cheesy filling I thought I could weep. It was a reunion in the most primal sense, an end to deprivation, a sense of restored order. And it caused absolutely no pain.

I’m torn between calling the nutritionist and confessing my transgression (dairy wasn’t really on the agenda for anytime soon), and not calling her and finding my own best path to getting well. I suppose a phone call can’t hurt. For now I am curled back up in bed, still grinning like an idiot at the way the flavor broke across my entire being.

Casually connected

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Wires and Windows, by Franco Folini on Flickr, licensed under Creative Commons

Back to normal. Which is to say, we greeted this Monday in our customary way – ill-prepared, waking at 6 but not sentient or verbal or effective until 7 or even much later (if you were Young J and got up on the wrong side of the bed and then decided flipping the whole bed over – metaphorically – would solve things). We are simply not a morning family. I hovered and tried to do what I could, but ultimately the chaos sent me retreating to the safe house of the bedroom, where I could contain any collateral damage I might cause by trying to handle an explosive situation while still on crazy-making steroids. I sorted laundry to fold, then became too exhausted to fold it.

This morning heralded the return of our cleaning person (I’ll call her Rosa, not her real name), whom I’d called off last week because I couldn’t face the turmoil. J and I (meaning all J) spent the weekend getting the apartment ready for a cleaning. Things were shifted, decisions were made, and my primary contribution was expanding the shelving devoted to books in the boys’ room, now that board books give way to I Can Read and Hardy Boys and Tintin and other multi-volume series. The stuffed animals, which had been permanently spilling from their compartment, are now imprisoned in two shopping bags. I’m unsure of their fate. I think the kids are too.

While I waited for Rosa to arrive, I did the “small” task I’d left for myself this morning, after folding laundry: switching the boys’ duvets to the winter ones. As soon as I began I realized my folly. This is an insane workout under normal circumstances, and in my condition it was beyond what I could do. I have noticed, however, as you may have if you’ve been reading along, that I possess a certain amount of stubbornness which often gets me past the point of no. It gets particularly strong when it comes into contact with IKEA products (like the duvets).

Three weeks ago today, the first day of truly bad stomach, I had gone to IKEA to pick up a cabinet J decided we needed to replace a flimsy one in a hallway closet. I took the item name and went, unquestioning, to the warehouse (despite my dodgy stomach). I arrived at the correct shelf and bin and realized the package in question was a box weighing 77 pounds and measuring five feet tall. I had 90 minutes until I needed to pick up Young A from school. I made what I felt was the only sensible choice – slid the box off the shelf onto a dolly, crushing various fingers, paid for it and my dozen packages of paper napkins, wheeled the thing to the garage, folded down the back seat, and wrestled until I’d got it in (a few more fingers down). I had the same sweaty exhilaration I felt when I got Mom to her bus the other day, an against-all-odds triumph that transcended the sheer stupidity of what I’d gone through with. The cabinet? Remains boxed. It sat in the car for two weeks until J had a neighbor help him carry it up the stairs, neither of them sure how I’d even gotten it in the car. It is now the cabinet of my unwellness. Perhaps it will never be assembled.

Rosa arrived. I’d very much been looking forward to speaking with her, catching her up on my ordeal, which would be pleasantly distanced by my telling it in Spanish. When she arrived, though, I was on the phone with Nurse Practitioner K, who was overjoyed at my progress but still unwilling to drop my dose of steroids, at least until tomorrow. And given my Very Stupid Mistake with avocado salad of a couple weeks ago, she made sure to tell me I should continue to steer clear of avocados.

I got off the phone and gave Rosa a huge hug. She stepped back and took a look at me and told me how well I looked. You can imagine how that went. I told her briefly what I’d been through and that she can be glad I’m okay, but that I really cannot accept a compliment like that, because I have suffered a lot. She finally relented. She told me how strong I was, and she told me how great God is (not something I am used to hearing from her, but apparently she’s had two friends convinced their faith healed them of cancer). And then told me her life story starting with her husband abandoning her after 25 years of marriage and the tailspin of self-blame that sent her into for over a year, until her good friend shook her out of it and she started seeing a psychologist and things got better. (Where I come from, by the way, this is a completely normal interaction to have with the person who has arrived to clean your house. I wouldn’t have it any other way.) It was a cathartic start to the purging of the house. She’s exorcising the demon dirt from my bathroom and bedroom right now. I can’t wait.

I’ve thought a lot lately about a Yiddish expression that Primo Levi used as an epigraph for The Periodic Table: “Ibergekumene tsores iz gut tsu dertseylin” (Troubles overcome are good to tell). As good as it has been to talk through my pain, through gritted teeth and clenched fists, it is even sweeter to talk over it now, to gain that needed distance where humor (my all-sustaining force) becomes possible.

Thinking about The Periodic Table is a portal for me, straight back to a moment in time so different from the present. My senior year in college, I took an English seminar on the nonfiction novel, with Professor John Russell.

The same semester, I was struggling to get out from under the required junior English class, Expository Writing, which I was going to have to take to graduate. I’d tried to take it once before, and come up against a TA named Jennifer, whose worldview was so completely antithetical to my own I’d had to withdraw from her course as my grades on papers slipped to the C’s.

From high school, I’d known I could write, and I would write, and the occasional roadblocks education tried to throw in my path (which involved trying to get me to learn how to organize a logical argument, compose a coherent thesis, basically how to dutifully fulfill my readers’ expectations) chafed a great deal. It never occurred to me, for example, that my 20-page analysis for my French poetry seminar, on how Pierre de Ronsard’s deafness pervaded his sonnets with images of incapacity, might have been better received if I’d actually had a thesis to stand on. The probable fact that I suffered from attention deficit never occurred to me. I just kept poking down corridors until I found the teachers who didn’t care about that petty bullshit. In a large state land grant institution’s English department, you find them.

Professor Russell had a fantastic syllabus – we read books that were vital and visceral and smart and funny and devastating, like the Levi, and Out of Africa, and e.e. cummings’ The Enormous Room, about his experiences in World War I. There were themes that were important which connected these works – the one springing immediately to mind as a feature of nonfiction novels being the notion of bricolage, French for tinkering, which meant the writers would intertwine disparate threads, topics, moods, in order to evoke the sense of a novel from nonfictional events. That concept, and indeed the whole enterprise of a nonfiction novel, has never been far from my mind since starting this blog.

Professor Russell was a great champion of mine – papers and exams would come back with highest praise (“your coinage is expert”) and it made me regret not having been an English major (I majored in French and Italian literature). I wrote a final paper on Brendan Behan’s Borstal Boy in which I interspersed verses of an Irish song, “The Auld Triangle,” through the sections. The summit of my achievement that semester was being invited to visit Russell’s graduate seminar, where the Shiva Naipaul book on Jonestown, Journey to Nowhere, was being discussed. He’d liked some things I’d said and wanted his grad students to hear me say them. As luck would have it, that day one of his students was giving a presentation at the start of class. It was Jennifer, the TA who had shown only disdain for my writing. I got to sit and watch her squirm as I occupied the seat of honor. It felt… nice.

I finished the semester and faced some facts. I was going to be graduating. I didn’t want to go on to grad school in literature – I was rapidly burning out on reading and writing. I’d been working at the campus library and volunteering at the Library of Congress. It seemed like as good a path as any, so I headed down it.

In the spring, I ran into Professor Russell in the reference stacks. He asked what my plans were. I told him brightly that I’d be starting library school in the fall. His face fell. His kind and grandfatherly demeanor crumbled. “Now, what do you want to go and do a thing like that for?” I was taken aback. As was he, I suppose. It stung. I did not keep in touch. I launched a promising career as an academic librarian (a career which, twenty years on, has all but evaporated).

Professor Russell had been working on a scholarly work, called Reciprocities in the Nonfiction Novel. Many years later, I remembered it and searched the library catalog, and found it had been published. I retrieved it from the stacks, and on a crosstown bus ride, I read the introduction (which had been written by another English professor of mine).

I learned that Professor Russell had worked on the manuscript for many years, never being satisfied with it. He began a slow slide into dementia, and retired. The manuscript had to be taken from him. With the help of his colleagues, the book was eventually published. A copy was brought to the nursing home for him to see. His response? “That sounds like a great book. I’d love to read it.” His life’s work, become a plot twist worthy of any of the greatest nonfiction novels.

(Sorry, I need a nap.) (Sorry, this wasn’t really about cancer.)