I’m in transition. From steroid-addled scribbler to civilian with – maybe – a touch of cancer. (But still, a Sagittarius.) I’m lost in translation. Young A has stopped flipping his jacket like a toddler, and now gets into a fury when he chases his errant jacket sleeve around and around himself, like a dog whose tail forever eludes him. I try hard not to laugh. I try hard, at other times, to laugh. It’s good for the kids to see me laughing (not at them but with them). Young J gets furious when our conversation shifts to the 7 times table. There isn’t a way to turn it into a joke that I have found – at least not yet. I’m relearning how to sit at my computer instead of just using my phone, but the piles of papers on my desk sometimes make me flee, crawl back into bed. I have 25 minutes to prep chili ingredients and it’s going to happen. It can’t not happen. The boys were promised chili for dinner, and there tends to be hell to pay when my dinner promises are broken. Eating is serious business. It’s the only business I know right now. I’ll get out of bed now and prep, anticipating the hugs I’ll get at dinnertime.

I had a joyous “home”-coming at the cancer center this morning. It started with me getting there by subway, under my own power. When I got to the station I realized what a steep grade the stairs are there. Getting to the top felt like rock climbing, in my attenuated, sedentary state. Still. It didn’t kill me.

Just inside the door, I waited for Quentin to be free so we could say hello properly. He had a lovely Thanksgiving, and so did I. He engaged me in conversation just long enough, it felt, to be reassured I wouldn’t be returning there in a wheelchair anytime soon. Maybe my haircut reassured him. Maybe my non-pallor.

I made my way up to 9. Phlebotomist B greeted me warmly, with only three vials of my red stuff needed this time. As became clear, I have been dumped from the research study I had previously been enrolled in, because I “flunked” the ipilimumab portion by having my gangbusters immune response to the drug. (Hey, at least I got the week of radiation that was also part of the study up front! Score!)

Phlebotomist B told me about his Thanksgiving – his favorite holiday, he said, because “it is only about food, family and friends.” He is from The Gambia, so in addition to turkey they had other typical dishes he told me about. I love hearing about immigrant Thanksgivings, since my family’s is, also. After he’d finished the blood draw he told me how sad he had been to see me so sick, and how happy he was to see me well again. I thought I might cry for a moment, but right then Nurse Practitioner R and Dr. P passed by the room and saw me and I did a little chair dance for them. They also looked relieved, and were so happy I’d gained some weight back. I said I’d need access to a confessional in order to disclose what I had eaten over Thanksgiving. They laughed, and said they were happy I’d been able to eat.

Nurse Practitioner R did an exam – it had been a while since I’d been poked and prodded – and declared my belly soft and my bowel noises regular. This was all good. I mentioned that I’ve been having intermittent headaches after eating, and it was unclear whether that was connected to the steroids or not. It didn’t seem like a big deal, at least at that moment.

I waited around for my blood work to come back, and made a plan to meet J for lunch (now that I can eat again, this is my great reward, because he works very close to the cancer center).

The bloods were fine. Nurse Practitioner R called in a doll-sized portion of steroids to the pharmacy – I’m going from 20mg tablets over Thanksgiving to half of those the past couple days to 5mg for the next two days, then 2.5mg for two days, and then GOODBYE CRAZY PILLS, HALLELUJAH! Nurse Practitioner R told me of her upcoming trip to a conference in Rome (her first) and I racked my brain trying to think of some quick useful tips. I told her to avoid restaurants with laminated menus written in English, and to try to find restaurants with a verbal menu. (That alone should get her pretty far.)

Finally, the big news: I’ll be having a scan on January 5. A CT scan, as they have done before. But this time, because of my headaches, I will need to follow that with an MRI of my brain. (Damnit, I knew those headaches might be trouble. I guess I’m still glad I mentioned them?)

I went back to see the admin person to schedule the scans and saw a teetering stack of boxes and boxes of fancy chocolates and cookies on her desk. I had been thinking of a way to thank my team, and I think I realized seeing those that I’ll need to send something a bit different to make any impact. J suggested fruit. That sounds like a plan.

I went to meet J at a pocket-sized French chicken restaurant we’d been to before. The last time I’d had a chicken caesar salad that was delicious. I was going to order one today, but decided to hold off. I haven’t had any fresh leafy veggies yet, and Nurse Practitioner R asked me to please continue to refrain until I’m off the steroids. Given that there is now an end in sight to those, I decided to hold off. I’ll cook the bunch of kale I bought so optimistically yesterday (hoping to make my favorite raw kale salad). Even cooked kale may be a bit of a risk. I can’t believe how much I’ve missed greens. Once they are again permissible I will probably binge on them for a week.

So I drowned my sorrows with some really exquisite mushroom macaroni and cheese, and a piece of roasted chicken. The place is so tiny, there is only one small communal table by the door. When we sat down, a man was sitting across from us eating a chicken caesar salad. I coveted it. I tucked in to my meal, which was a reasonable consolation prize, and chatted with J. I told him about my visit, the outcome, and how exhausted I felt. I’m not sure whether the guy across from us had been listening the whole time, but he decided to chime in right then.

“Excuse me, I overheard you are tired. Are you working two jobs?”

“Uh, no. I am getting treated for cancer.”

Apparently this man had two conversational triggers – one having to do with working two jobs, which probably explains his choice of opener, and the other having to do with his wife, who battled breast cancer for ten years. We were trapped and there was going to be no escaping.

“You know, you need to have a lot of faith. Faith in God. That is what will get you through.”

I really didn’t like where this was going. And I wasn’t even half done with my lunch. So I needed to head him off at the pass.

“I don’t think that is the case for me, sorry. I do have a lot of people who are praying for me. And I appreciate it. But I am putting my faith in science.”

He wasn’t really sure how to keep going in that vein, so he shifted to his wife’s story. It sounded nothing short of agonizing. Ten years of surgeries, chemo, even some kind of surgery on her neck to keep her head attached to her spine.

I felt for her, for him. But this isn’t my trajectory, not by a long shot. I thought perhaps of asking about his accent (it was pretty clearly Persian), how he’d come to this country and when – the usual questions I, as an immigrant, ask other immigrants. But I also felt strongly that I didn’t want to encourage him. I felt annoyed at his intrusion.

By the end of our meal we’d heard about his two jobs, the way he’d had to support his family and be both mother and father. This was a man in great pain. He wished me well. I wished him comfort in his grief. I wish I could have felt better about it, but it wasn’t what I needed at that moment.

I guess my take-home lesson from today is, no, you don’t have to tell everyone you have cancer – particularly if you aren’t prepared to listen to their narrative in an empathetic way. The world is sadly filled with people who have their own cancer narratives, and you draw them out at your own risk.

Turns out the Monday I was dreading yesterday was waiting for me today. Our first mistake was relying on the kids to wake us. From time to time they sleep in, and this morning was one of those times. Young A made it through the night without any visits to us, a very welcome innovation that I hope he appreciates – I know I did. Unfortunately, when the kids sleep late, they are brimming with energy, and for morning purposes I prefer them more groggy and pliable.

My problems actually began last night, when J came home from work. I’d told him it was going to be fine for him to play basketball after dinner, meaning I would be solo with the kids through bath and bedtime. I did mean it when I said it would be okay. But it turns out I had already spent my battery for the day (going grocery shopping on my own for the first time in a month), and had not left time for a nap, and by the time J got home I was in no shape to spend the evening alone with the kids. It felt awful to make J cancel his plans. I dozed on and off throughout the evening.

I thought I was further along. The progress isn’t linear. And now it’s raw and cold out. On the bright side, back to the cancer center for a checkup this morning, and I’m getting there by subway and walking in to the building, instead of being wheeled in. I have to seize signs of progress where I find them.

I was damn determined this morning. A Monday morning after a holiday break from school is stacked with the possibility for many, many things to go wrong, pear-shaped, haywire… even FUBAR. It’s happened before. It wasn’t going to happen today.

Young A woke me at some point during the night. I asked what he needed. “Ummm… never mind!” he said cheerfully. Not so fast, little guy. I steered him to the bathroom and then back to bed. I did myself a favor and didn’t check the clock. I’d like to think that helped me fall back asleep more quickly. At school, Young A has been seeing a counselor who told me that he said he is now sleeping closer to our bedroom, since I’ve been sick. That isn’t actually true – his bed is the same distance it’s always been from our room – but I wonder if his nightly visits are some sort of vigil he’s been keeping. I hope they soon come to an end, now that he sees my condition improving. WE’RE JUST SO EXHAUSTED.

So even with that hiccup in my night of sleep, I was up when I heard the kids get up. Sure, it took a good half hour after that for us to get ourselves up, but we managed, and we got the kids to eat. Young J had gone to bed last night saying he wished to eat a “hearty breakfast” this morning, no doubt influenced by our reading of Farmer Boy, and the legendary breakfast enjoyed by Almanzo in the chapter we read. We didn’t quite have a table laden with jams, jellies AND preserves, there was no fresh apple pie, nor do we eat sausage cakes with brown gravy in our home, and the schoolmaster wasn’t boarding with us, AND we were out of the cereal he favors, but he still managed to eat well. Even better, he got through the morning without his usual tantrum. Win-win-win. Young A tried to stir up trouble but didn’t find a willing partner in crime, for once.

I think the real reason the morning went more smoothly was me. I cut my steroid dose in half this morning – literally half a tablet. I may even cut that in half by Wednesday. My tightened-chest anxiety is all but gone. I’m no longer permanently clenched in knots. Something to do with eating, with gaining back nearly all the weight I’d shed (and despite my caveperson diatribe – yes, I will cop to being slightly disappointed about that, but ultimately, it’s better not to keep that kind of weight loss), with being hungry and actually being able to eat what I want to, instead of finding workarounds. Yesterday we took the kids to a show in the city, and went for Thai food beforehand. I couldn’t stop sampling everything on the table – even what we had ordered for the kids – because the flavors were all so new and exciting. Later we stopped for coffee and fancy donuts. I still haven’t been willing to go back to caffeine, so I had a decaf latte that tasted delicious all the same.

I made the kids’ lunches, even spoiling Young A by giving him things that Young J doesn’t like in his lunch (edamame and applesauce). At no point did my brain freeze, or scream that it couldn’t handle the minutiae of preparing lunches. I was totally calm. This wouldn’t have been remarkable to me a month ago, but the steroids and the illness lay me pretty low. My functioning was so decreased I couldn’t be counted on for much of anything. It feels so good to feel competent again, to feel light-hearted again, to be able to joke with the kids, who still peer at my face when I’m laughing to make sure I’m okay, and that I’m not also crying. I think J is also relieved.

And now it is December – birthday season for me and Young J, Chanukah, and the general dopiness at the end of the calendar. I’m so ready for it all.

My only (minor) worry is that I’ll lose my edge here. That my writing will become dopey in inverse relation to my steroid intake. Almost like I’ve been on a special kind of ride and it’s ending and I’m not sure how to feel (well, other than completely fucking great and grateful that I survived it). Maybe some readers will get bored and move on to the next medical drama blog. If that’s what you are after, Godspeed! It feels like this place will, going forward, be dedicated to other, more abstract explorations of the nature of illness, the minutiae of daily life, and how those can intersect in less traumatic ways than I’ve experienced in the past month. I am all done with medical drama. I hope it is done with me.

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.)

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.

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.

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.

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…

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.