I got a whole extra hour last night, and feel like a new woman. (Also a new woman because I think the meds are changing my face in puffy, red, unfamiliar ways, and it’s been days since I felt I looked remotely presentable.)

What did it, the sleep? I was out after the kids went to bed. Met my friend S and we went to visit C, my favorite bartender down the block. He is legendary for his mojitos, and boy did I need one. I settled for the passion fruit juice that’s usually in mine. S had tamarind. It was delightfully subversive to be sitting in a temple of liquor and not drink a drop. C usually likes to share out and join us in a shot of mamajuana. Skipped that last night too, obvi.

But the salient reason for being there – talking with S (no stranger to her own medical woes in the past, and a most wonderful friend who happens to live a few doors down) and also C, who has the bartender’s gift of fading in and out of convos appropriately (never, ever intrusive), was the point for me.

I am in perpetual search of conversation these days. I could just set myself up on a bench with a sign. The people I could talk to in the course of a day. All my fave neighborhood people. People I’ve never spoken to. Crazy people (as long as they don’t smell too badly of pee). Maybe one of these days I’ll do it.

There’s a bench on our corner installed by the city a few years ago, part of a program to get old people places to sit. I don’t know who requested ours, but the day they put it in, I was out on a rainy walk with Young A (age 2), we were at a loose end for what to do. From under the dry cleaners’ awning, keeping dry, we watched the men drill holes in the sidewalk and pop the bench right in, a lovely contemporary design. Young A had to stay until the last man left. They saw his interest and one of them took a rag and wiped it up for him. He took a seat. He climbed up and stood on top. He was the very first person to sit on our beautiful new bench the city brought us.

It is Young A’s bench, forever. Things like this, and a million more, make it hard to ever think of leaving this place.

( I promised J I wouldn’t embarrass him on this blog so the last thing I did last night is censored.)

John Lurie’s paintings arrive at truths quickly. That is only one of a million reasons why I love them. Watch this space for a longer post about John, and in the meantime, look at his paintings and enjoy them. They are pure enjoyment.

My first post coming off of Lorazepam dreams. Be gentle with me as I sort out language.

I’m talking to the boss this week. She needs to know what’s up. She also lives close to my house, so am hoping she can meet nearby, in lieu of us each traveling an hour by train to talk. I’m also considering going to my staff meeting to talk to my colleagues. But not sure yet what I’ll tell them as far as my employment status. Boss meeting first. I do need to and want to let everyone know what is up with me, because so few know.

The kids were lovely today but I think enough got to be enough. I’m hoping if I can regain strength at home I can be a more engaged presence. They need that from me. Not a crashed out sleeping mom.

Sleep is tough. It seems to wind up around 4:30 or 5 and then I’m wide awake until late afternoon. The afternoon nap needs to happen by Lorazepam force, and even the force isn’t strong enough to vanquish the power of my phone, sometimes.

I learned this morning about something I’d like my family to go do next February. A trip, but not only. The costs are prohibitive and it just feels crass to think about on a day so many have lost so much in Nepal. I am standing by to direct a donation there. Please speak up if you know best source.

But I cannot help myself, and am conceiving of a Kickstarter that might make this work. I love the idea of most people giving $20 apiece and facilitating something extraordinary for us. There is some time pressure to sign up for the trip before it fills, too, so that makes this all very urgent. I’m hoping that by tomorrow I have either found a road ahead or been able to write this off as today’s obsession, to be replaced with tomorrow’s. We shall see.

In the meantime, J ordered me a new laptop I’ve been coveting, and I am halfway through some lyrics for a rap song about my cancer drugs. (Life is weird and keeps happening and what is bad about that?)

Open your hearts and your wallets. This hurts. Peace and safety and prayers for Nepal.

I’m just wondering how exactly my life broke open into something extraordinary. The past week has opened new vistas, some of which I could never have foreseen. I am full of gratitude, and that is something I’m pretty sure I’ve heard isn’t too common in cancer patients. Perhaps I can thank the spring. Perhaps my brain, for not leaving me in the lurch. The world seems to be taking notice of my potential creative talents. It’s been a long hiatus in that regard, and I can’t say I mind a bit to be on the receiving end now. Keep those offers coming and I’ll actually do things now beyond just talk.

Things seem so much less random tonight. A lot more solidity, even as the margins of the unknowingness are still so vast.

A good meal can do a lot. I had a good meal. While I slept the sleep of Lorazepam this afternoon (the kind of odd sleep you fight to attain, then fight later to shake off), J made the most fantastic dinner for us. Roasted veggies of every type. Steak and salmon. Salad.

My friend K was coming over for dinner for the first time. An artist I’ve known for a bit, but not really hung out with before. After some initial misunderstanding about when we wanted her here, she came, and even though Young J had been keen to have her here during the Shabbat blessings, so he could explain them to her (she’s not Jewish), she got here late and missed them. But we talked about them anyway. She looked amazed by the boys. It was easy to feel that way about them too. The night had an irreversible charm.

After dinner, my friend K looked at Young J’s art portfolio. It was so wonderful to see him take such pride and explain, and to see what K took from his work. She also spent a little time showing us her constant performance/interactive piece, which is a man figurine who lives in her pocket, who is not the same race that she is. I started using this to introduce Young J to the ideas of otherness, alienation. It’s heavy, but his brain gets heavier daily and this stuff is so interesting, I figured I should just try.

The boys were up so late, beyond all reason, especially since they’ve been rising much before 7. The daylight is encroaching – when I woke from my Lorezapam nap, I found pajama pants covering my face to block the light.

Less light, less light! Could Goethe’s own dying words have been wrong? Would less light have saved him? Turns out, he may not have said this at all:

The “Mehr Licht!” (More Light) quote from Goethe is disputed. It’s also claimed to be “Mehr nicht!” (No more)

(Interesting.)

I’ll leave you, as this gets progressively less linear, with an idea someone has proposed. Someone I know wants me to write a rap song which he wants to produce for me. I am seriously considering it.

Nothing is off the table.

It never fails… It’s meant to be a chill morning, yet by afternoon it’s batshit in here. Am I a lightning rod? (Must not be discounted.)

This morning I took kids to school extra early so they could have fun on scooters before school. That’s fun when they are wearing their winter coats when it is below 40 degrees, which it was. I didn’t think they needed them. My poor children tried to have fun for me, truly they did, but they were so anxious to just get indoors.

I went home and waited for my friend D to text. We were having coffee and I upgraded our coffee around the corner to “let’s take the train to Manhattan and go to the good coffee place which is also around the corner from the optician’s where I have to get my glasses adjusted because for one week they’ve been sliding off my face.” She was game. And I was grateful to have a companion on the train – didn’t know how I’d do, especially at rush hour. (Fine.)

It was so good to see D. She came into our lives as a wonderful special ed teacher, who worked with Young J, all too briefly, years ago. She then wound up giving birth to her son exactly on the same day and hour as Young A, one year later. We’ve had a connection from that too. She helped out last time I was sick in the fall. She shopped for food for us this week. She is the ultimate good egg. She also has had a rough week with her 4 year old, so I was ready to commiserate and make sure she knew it wasn’t forever. Four wasn’t a picnic with my guys, either, so I could be a poster mom for it getting better. For once in ages I felt, somehow, useful again. This felt great.

We spent an hour having coffee, then headed to the glasses store, where I was in for a 20 minute wait for glasses adjustment. I found a chair, because I am now like an old man, living bench to bench. She had a good time trying on shades and used their fun photobooth. Then we talked some more. She needed to leave to get her boy, and I finally got my glasses adjusted – some kind of process out of the artisanal past. I heaped my adjuster with praise. She put them back on my face and I felt I’d been given a new face.

This buoyed me. I initially had been planning to go home, shove some food in my mouth and take steroids and sleep. Instead, I called J to see if he wanted to come down to get falafel with me at the city’s best. He did! I waited on a park bench across the street, freezing, until he arrived. Handsome as ever. My lunch date. The sandwich was everything.

I wended my way to the train slowly so as not to disrupt any delicate balance in my head. Stairs are slow. But I think I may have run a little, and found it okay.

The train ride home felt slow. With my meal in my belly, I was getting sleepy. Not a lot of passengers and I wondered if I should enlist one to make sure I wouldn’t miss my stop. I didn’t see anyone begging for that kind of responsibility. I powered through, then even more slowly walked up the stairs to exit.

My block, in sun. A lovely sight. But soft, what was in the doorway of my building? A missed package memo from UPS. DAMNIT. I had quite forgotten my cancer drugs were arriving today. They needed a signature. None of my neighbors were around (though it’s possible they wouldn’t have surrendered them to anyone but me). I looked up the block. Not one, but two UPS trucks. Double parked. I went like a madwoman towards them.

One UPS guy on our block is the legendary Johnny. He is devoted and never lets you down. The corner cafe has a drink named for him (which he doesn’t actually drink anymore since he went on a health kick). I knew finding Johnny was my key. If the trucks were empty, I’d check the cafe.

I saw some movement in one of the trucks. I picked my way through traffic and saw it was not Johnny. But I had to try. This driver was young, South Asian, seemed polite. He asked me for ID but did not make any promises. In minutes, he got my box, had me sign, sent me on my way. (Johnny, you are wonderful, but there are also others for me now.)

I wasn’t expecting something quite so dramatic as this bag… but with that kind of hot pursuit? I’d say it makes the whole thing worthwhile.

You can listen to this song here now. I’ve lived it, and now I’ll be sleeping for hours. (With drug help, yes please.)

Apparently I’ve blogged 100 times. It doesn’t seem like enough of a number and yet of course it’s also far too much, because what I’d be doing if I had my druthers is ride 100 miles on my bike, have 100 more darling kids, spend 100 more amorous years with J, eat 100 things I shouldn’t, compose 100 sonatas for the piano, write 100 collections of sonnets, meet with 100 students a week who need research help, visit 100 places I’ve never been, learn 100 more languages, earn $100 bazillion and give $99 bazillion away to what matters most. And that would be the first day. A good day, and I’d sleep well that night.

In the real world I’ll just keep writing this little blog on my little phone. Have some big ideas for new posts. Have a notion if I can spend any time sitting up in my desk chair I’ll finally get around to properly posting categories for these posts.

But really, this whole thing is just anti-death and anti-shit insurance, so I’ll just keep it up.

Dans le tout petit trou
On aperçoit
La mer entière

My blogging tendency is long. Longer than long. I need to experiment with shorter form. So here is a recap of an unremarkable day, brief and to the point. (Except that none of my days are unremarkable, brief, or to the point.)

The morning: Banana bread with peanut butter. Children getting cantankerous as the days go on and I keep taking them to school as I haven’t done in months. I can’t work with their silliness at all. I shift the work onto J, and as soon as we leave the house, with the sun shining, they are perfect angels again. (And J gets to shower and emerge to an empty, quiet house.)

(Sidebar: I somehow was obsessed with telling Young J about social justice this morning. It started with zoo animals, moved on to police brutality and eminent domain, and I finally invoked a description of the Jews as am kshei oref, a “stiff-necked people.” It’s something he may have touched on briefly at school but it’s something that matters to me a lot, perhaps especially right about now. Stiff-neckedness, as a means of survival. Personal and collective. Yeah, I’m not sure Young J heard it all!)

Young A’s classroom has an “airplane” set up for the kids as they are taking a virtual plane trip to Israel today for its independence day. All the kids in blue and white. Young J’s ready to say goodbye at the curb to me again (but I did get to come inside earlier this week and see Spike, the adorable bearded dragon in his class). Young J already knows what he will order from the falafel truck tomorrow (a really good one, which will park right in front of the school). It’s a good sign he’s willing to try falafel. Note to self, he may be getting less picky.

J meets me at the cafe before we take the train together. We coffee up some more. He goes to work and I head to a checkup at the dermatologist, one scheduled long before the current crisis. In my bag, I have my steroids (in case I am still out at lunch time) and the anti-seizure drug they prescribed yesterday. My thinking is, if seizure comes on, I take pill which makes me sleepy, choose a subway, and take a nap for an hour. It seems to be a solid plan. (Perhaps the actual insanity of the plan is what keeps it from needing to be put into place.)

Get to dermatologist seizure-free. Long wait. Finally see doc and he knows what is happening and hastens to tell me about another patient of his, same brain lesions and drugs, who is doing great now. I like you, Dr A, always have. He checks me over, snips something to check (while telling me it’s nothing), and finally lets me just gab for a while. I am indulged by my dermatologist today.

I have some calls to return – the CVS pharmacist in Illinois has some drug interactions to warn me about. I call and stay on hold with Nurse Practitioner R for 25 minutes and she says it is fine, don’t worry. She laughs at my seizure-subway plan.

Where have I been on the phone? Out on the street for 35-40 minutes. It’s chilly today. But I’m on the block because catty-corner from dermatologist is my new eye doctor, the one with the droopy eyelid theory, and I want to send any notes he has to Dr P. I walk in there – obviously not a day the doctor’s in. Music blaring, smells of cleaning fluid, staff seem very relaxed. I ask them to send a fax. They are very cheerful but technically incompetent. Printer isn’t working. I ask to help them (because I have nothing better to do) and come back behind the counter and suggest stuff. Nothing works. The doctor also hadn’t written anything about the droopy lid, so I’d have to wait til tomorrow to talk to him about it. What I do, seeing an IT setup in shambles? I make a referral to J’s consulting business. I tell them he has worked with doctors and dentists before. They seem interested.

I stumble back out onto the street and stop at Sephora on the way to the train. I sure haven worn any makeup lately, but I know I’m out of makeup remover. I buy some, then some random Clinique eye thing, because it has SPF 20 on it so it must be helpful.

I get down to the train and a woman I have seen before in my neighborhood says hi, asks how I like my short hair. Her daughter is adorable and I play at guessing what her name is. Once we get on the train we wind up in a deep conversation and I tell her everything that’s going on with me, today, this week, this year. She doesn’t seem fazed. She listens. I smile at her daughter while I disclose the most painful things imaginable about my health. This is how things are for me, state of a random Thursday. Thank you, Adrienne, my neighbor, for listening.

On my way from the train to grab lunch so I can take steroid, run into another neighbor. He says he hasn’t seen me lately. I tell him. The five seconds flat cancer speech this time. He’s Jewish so I give him my Hebrew name. He’ll pray for me.

A slice of pizza in a bag. Home and scarf it down, swallow the pill, chase it with a liter of seltzer. It’s a living. That isn’t more or less than what it is.