Second year-end, same as the first

Vendredi soir, c'est le départ, by Steve Grosbois on Flickr, licensed under Creative Commons

So much bad and so much good, all rolled into one year. It’s not easy to take it all in. Good news! I won’t subject you to another year-end wrap-up or top ten blog posts or even take a photo of my dinner. No selfie today. No long, drawn-out meditation on mortality and how much more I may know about it than you do. Boooooring!

We’re going to party hunker down festively with my parents tonight. I’m happy to be with them, because this is also the day they got married, 54 years ago (in the Southern hemisphere, where it is supposed to be warm this time of year). My dad mentioned he’d found some old photos, so I’m looking forward to seeing them with Young J and Young A, hearing their observations about how things looked in the past.

I’m secretly hoping the kids won’t make it until midnight. I know it’s probably just a phase, but the two of them together these days generate more chaos than I can easily manage – silly noises, playful swipes and slaps which sometimes get not-so-playful, rudeness, mocking… It’s always such a relief to put them to bed and wipe the slate clean. As it will be a relief to send them back to school on Monday. They are perfect children at school, so we hear. Or something close to it, anyway. Perhaps they need to be sent off to boarding school so they can be perfect all the time. (JOKING.) Actually, Young J has just started reading Harry Potter, so he’d probably love to attend a version of Hogwarts.

I’m not resolving to do anything this coming year. There are still things pending from this year, last year, every other year. Also, dieting feels a bit too punitive, when you’ve just come off steroids. I know what I need to do, and I’m looking forward to having time to do it.

This morning in the shower I thought about asking Dr P, the next time I see her, if I’m a dope for not asking lots of questions at every appointment. You know, like, “How’m I doing? Am I going to live another year? Where’s this stuff going to pop up next?” I don’t ask, because I know these questions are unanswerable. I don’t ask, because she doesn’t want to discourage me. I don’t ask, because I go to the cancer center each time ready to greet the medical personnel as friends, and hoping they are not the kind of friends who bring you bad news. Maybe this makes it harder for them, that I think of them as friends. Maybe this makes it easier for me.

Last night, as we got ready for our trip today, I decided – okay, resolved – that I would not be greeting 2016 with the hoarder-style pile of papers and cards next to my bed which has been there for weeks. The past few days I was looking at it and the word “harborage” kept coming to mind, as in pests. Ugh.

So, even though it kept me up late, I sorted everything, mercilessly recycled many birthday & anniversary cards (except the ones J has given me), sentimentally perused the Mother’s Day ones, and wound up seeing the bare floor again for the first time in ages. I had gotten some cardboard storage boxes and put everything in them. One day, I’ll go through them again and get rid of everything, but not in a Kondo manner. I won’t say thank you or bow. I’ll probably be preparing for a move, and exasperated I kept this much stuff.

This morning when the kids came in, I pointed out to them that The Pile was gone (The Pile was making it hard for them to get near my bed to give me a kiss in the morning without slipping on papers).

Young J murmured something approving. Young A said, “Yes, but I see there are two boxes there now instead. And your laptop, and your laptop case.” (Young A isn’t happy with what you’ve done, apparently. He’s happier showing you what still needs doing. He’s a tough cookie with eagle eyes. Which also makes it hard to get rid of stuff of his without him noticing…)

Happy new year, everyone. I hope to be here same time, next year, issuing another greeting, and again refusing to compile a year of life in list form.

Creaky, brittle

1953 Food Ad, Sophie Mae Peanut Brittle Candy, by Classic Film on Flickr, licensed under Creative Commons

Steroid withdrawal has me in its clutches again. I can barely crawl out of bed in the morning (or really, any time I make the mistake of lying down). This should serve me really well when I’m solo with the kids for a few days next week. I’m also coming off Keppra, which is what usually knocks me out, so there’s all that to consider also. On the plus side, I’m not a raging Decadron maniac anymore. (I don’t think.)

There are also the pains you learn to try to ignore when you are kicking steroids. My underarms are sore, making me check my lymph nodes obsessively for swelling. My left ring finger currently hurts so much – extreme, almost arthritic pain – that I’ve had to relocate my wedding ring to my right hand. It feels strange there, like maybe I’ve gone and remarried someone else.

But no, it is still the same J, the wonderful guy I married. I just went to check while he washed the dishes. I swear I don’t know where he gets his stamina, especially when it comes to being with the kids when they’ve driven me up the wall long ago. Perhaps the fact that he has not been on steroids helps a little.

I need to bounce back, and I know what it takes, having been in this position more than once. Unfortunately, a lot of what it takes is time for myself, time to rebuild my good routines of fitness, meal planning, life planning, etc. And that won’t be possible for the next week, while the kids are out of school. So I’m heading into a week of survival mode, after which (assuming I survive the week) I will reconstruct what needs reconstructing.

The birthday cake is finally gone. Soon the cookies will be, too, and the chocolate. Soon, the calendar page turns, and the new one reeks of renewal. Of second, third, who’s-even-counting-anymore chances. At least I don’t need to build a whole new routine. I just have to reinhabit the old one. I wonder if that will make it easier??

Passato remoto and the present tense

In Italian, passato remoto is the verb tense you use for things that are very solidly and without a doubt in the past. Yesterday might seem like it is in the past. Technically, yes, it is. Last week might seem like old news to you now. But guess what? When you’re dealing with a language like Italian, you need an entirely different verb tense, one that needs to be able to evoke millennia, which is appropriate when you’re dealing with antiquity. The remote past – it is necessary, and so it exists. It is conjugated in a totally different way, with just the verb itself, no modifying verb needed. For the recent past, you basically have to say,  “I did go,” or “I did swim.” I swam would be the remote past, but it would need to have been some time since you’d swum. Not just since the summer. Try since 1962, or something. Even that might be too recent for passato remoto.

Via Aretina, 57
Via Aretina, 57

For a few months – very few months, it seems crazy to think how few months – this was home for me. I’d walk back through this dark alcove from the bus after school, or stumble back here in the late evening after a drink or two, call the tiny elevator, go upstairs, and be home. (If I was lucky, I didn’t wake anyone.)

The photo above makes the building look like it inhabits the recent past, however. So let’s zoom out and get a sense of history.

Via Aretina, 57
Via Aretina, 57

The building bears scars, now. The plaster is chipping away. Is the building trying to slip into passato remoto? It would be too soon, but the decay is evident. The exterior most definitely did not look like this on the frigid March morning in 1992, either before or after an unusual snowfall, when I showed up to talk to a Mexican woman, G, about subletting a room there. The building, in contrast to 2014’s graffiti, was not LOST then.

But then I pan a little to the right, along the main street, and I notice something.

Via Aretina, 57 e pasticceria
Via Aretina, 57 e pasticceria

The pasticceria is still there, lace curtains and all. It is still called RENATO. There was also gelato there. I have no idea whether it was a good pasticceria, because every pasticceria seemed good because they contained delicious pastries you’d never had before. Our apartment, five flights above the pasticceria, benefited from the perfume rising from their ovens (and also, roast chickens from the rosticceria, which is, in fact, now part of the remote past). In New York City, they would undoubtedly find a way to make you pay extra for this olfactory privilege.

I’ve written here before about my time in Italy, and this has been a banner year in terms of remembering, because I got to see my friend J from Sweden, whom I met in Florence, earlier this year, after not seeing him since the last day of school in 1992. It was wonderful to snatch my memory of someone that might have slipped into passato remoto, and instead be able to update it, make it more immediate, to even change the nature of our friendship because we now speak to each other as adults in our mid-40s, not as kids barely in our 20s. In March, another dear friend from Florence, M, and her boyfriend F, visited too. Living in NYC has its privileges, when it comes to the world coming to see you.

Today, I saw H for the first time since 1995 (which was the last time I visited her in Italy). Dear, sweet, beautiful H. The person I shared a room with in that apartment on Via Aretina. Of all of the ads in the newspaper that week, of all the ads I called looking for a place to stay, I like to think it was no accident we wound up meeting. H possesses as much complexity in her very existence as I do in mine, based on family origins (her father was Italian and her mother, German) and how that always seemed to require explanation to everyone. She loves literature, and I remember borrowing a book of Kafka short stories translated into Italian from her. She was also instrumental in getting me to understand certain bedrock cultural assumptions that I was to uphold under every circumstance. Like, I was supposed to wear a belt. Always. And I was never, ever again to do what she caught me doing one night while I ate pasta for dinner: mop it up with whatever I had available (which that night, to my retroactive horror, happened to be Melba toast). H mostly ate salad for dinner. But on the rare occasion she cooked something, it was always exceptional. I remember her whipping up a pot of pappa al pomodoro, a simple Tuscan tomato soup that was the most delicious thing I’d ever eaten.

H and I moved in different circles outside the apartment. I hung out with friends from school, or from the synagogue, usually going out for drinks or to a movie, or maybe a club. I can vividly remember a couple of occasions when H and I went out together, however. One was very early on, when we didn’t know each other that well yet. One of her classmates from school was taking part in a fashion show, and we went to watch. It turned out that the fashion show was just one of a series of events in an evening at a stadium that was put together to support the local Socialist candidate for parliament (it was election season). There was also a noted Florentine comedian, Pieraccioni, whose jokes were unintelligible to me because they were all in dialect. And a pop singer, Alessandro Canino, came by to sing his awful hit, “Brutta.” It was one of the most Italian evenings I had while there. It was italianissimo. Another night, we went to a performance art thing which was called a mimmidramma (mime-theater?) which was performed by a bald man who had some definite issues with his mother. It was an evening that we would recall with fits of giggles for weeks after, and as an in-joke for years after, repeating lines from the show. Stranamente strano. Incredibilmente incredibile. La mamma ti vuole bene. Dammi un bacino. Quarantadue.

H took afternoon naps, went to bed early, and woke up early. On weekends, she often headed home to Viareggio, a Tuscan coastal town, or to see her boyfriend. He lived in Rome, I think, and they talked on the phone every night. He was a tennis instructor, maybe? I can still hear her voice, saying goodbye to him quietly on the phone every night: “Ciao, bello, ciao, ciao.” (They moved in together later on, to a town called Poggibonsi. I remember her telling me in a letter it was “fra i lupi” – among the wolves. I was never sure if she meant actual wolves, or if that was an expression that meant something else.) When H was away, I would put the tape from her “English for Medicine” course (she was studying nursing) in my Walkman and laugh at the cheerful voice. “Hello! My name’s Watson! Sheila Watson! I’m here for an operation! I’ve got… appendicitis!!”

In a flash, my four months in Italy were drawing to a close. H invited me out to her house to spend the night. I met her parents and her siblings and their amazing Maremma sheepdog, Brebi. I was really heartbroken to say goodbye when I left. H wrote me a few pages from a tiny notebook expressing what our friendship had meant to her. I had seen these before, at school in Florence, and I had decided they were called “friendship manifestos.” I hadn’t quite experienced anything like them back home (I don’t think yearbook signatures count). I still have the friendship manifesto H wrote for me, tucked away in my Italy notebook. She has great handwriting – very slanted, very 19th century, not at all like the uniform loopy script that most Italian women use.

I visited Italy a couple of times after that. Once, I visited H and her father (may he rest in peace) took us out on his boat, up to Portovenere. It was either on that outing or another one that H put on a wetsuit and a mask, took a tool with her that looked like a trident, and dove down to the bottom several times. She caught razor clams. Now, I don’t eat shellfish, but given that my friend had just dived down and caught them right there, I decided I would make a singular exception. H prepared them with pasta and garlic, and I still remember her cleaning the clams and throwing every fourth or fifth one to Brebi, who would catch them in the air and swallow them in a gulp.

On my last visit with H in Viareggio, things went a little pear-shaped on my second day there. We’d rented bikes and ridden through the pine forest to the beach. When we got back with our bikes, there was a fantastic trampoline, and without hesitation, we jumped on. I hadn’t been on a trampoline in years, and remembered why almost immediately. As I landed, my ankle gave way, and swelled up immediately. H, who was working as a paramedic at that time, took me to the hospital, where (after nearly x-raying the wrong ankle) they told me it was a bad sprain. I spent a few days laid up in H’s brother’s bedroom, which had the requisite Italian teenage boy decor (a poster of Mickey Rourke). Brebi had recently had a litter of adorable puppies – ten of them – and they were happily peeing all over the downstairs of the house. By the time I left, they had learned to climb upstairs, too. I was in a lot of pain, but made my way to Florence for the next leg of my trip, at least secure in the notion I wasn’t going to be adding to the chaos in their house anymore. But no one had ever complained or showed annoyance with me there – only extreme kindness and care.

H and I lost touch after that visit, and when J and I were in Italy in 2004, I could not find a way to get in touch with her. We briefly got back in touch again via her boyfriend’s email address, in the late 90s. I didn’t learn what happened to that relationship until today, and it was the saddest story imaginable. I won’t go into details here, but I did tell H that if such a thing happened here, not only would there be a lawsuit – it would be a lawsuit that was televised, all of the involved parties shouting at one another. My heart hurt for her.

Thanks to Facebook, which has brought me back in touch with many significant people, H and I are back on each other’s radar. So she knows about my more recent problems, and I know about hers. When I was in the hospital with a collapsed lung last year, we texted, because I was up late and it was morning for her. We send each other love via emoticons, sincere and heartfelt ones.

I was so excited to hear she’d be coming through New York. I had hoped we might have an afternoon to spend together. Things were a bit hectic, due to her schedule and the unremitting, monsoon rains this afternoon… but H and I reunited at last! And at last, I met her wonderful husband, and also their friends from back home.

I’m so grateful to have seen H again, to have reconnected, and to be reminded that as old as I may feel, and as long ago as many things I’ve narrated here may seem to me, I am still far too young to ever use the passato remoto.

Ti abbraccio, H.

20 anni dopo
20 anni dopo

Another hurdle cleared

Hurdles, by Universal Pops on Flickr, licensed under Creative Commons

It was such a busy weekend, between visits and parties on Saturday and Sunday, that I truly had no time to stress out about this morning’s MRI. No time to meditate on or visualize good results, as I try to do when I remember to, until I was already inside the machine, IV placed by an MRI technician who had to convince me he knew how to do that (I’d only ever had a nurse do it). I wasn’t at the hospital today, I was at the facility a few blocks north which never seems to be crowded. And which has the employee who looks like the medical assistant version of Iggy Pop. I saw him this morning while I was waiting to go in. I decided he would be my good luck charm, that seeing him would bring me luck, even though he seemed to be in a foul mood and complaining to a colleague about how everyone else was lying on a beach in Mexico except for them. It isn’t a great idea to choose a person to be your good luck charm. Because they can be in a bad mood, or hey, maybe next time he’ll be lying on a Mexican beach, himself. (I wish that for him, he seems like he could use a vacation.)

Today they stuck me inside the MRI machine without a mirror. Usually, they put a mirror right above your face which works like periscope, letting you have a view of your feet. I don’t know if they forgot it or what, but I decided I was more interested in getting this whole thing overwith than seeing my feet. So I closed my eyes and drifted off a little. I have given up music while in the MRI machine, too. Pandora’s classical music selection can be pretty awful, and I don’t trust any other genre label enough to choose it. So today I just listened to the machine, tried to predict which noise patterns would come next, and tried to figure out how long I’d been in there. They notified me over the speaker when I was halfway through, which is when they let the contrast come through the IV. Until that halfway point I think I’d mostly been sleeping.

I was very early for my MRI appointment this morning. This meant that I’d be waiting around for a longer time to be seen by the neurosurgeon, too. When I was done with the MRI, I walked down towards the hospital. At first I thought I’d wait in the main lobby. I found a place to sit, but there was a Satmar couple, the pregnant wife very nervously pacing around and around and looking like she was in preterm labor, and it was stressing me out. Also, I guess I finally had an opportunity to realize that whatever news I was going to get would be pretty major. I’m good at waiting. I’m pretty good at listening to news. I freak out later, after the fact.

I decided to go upstairs and just inquire whether they might see me earlier. There are always a few people in the waiting room, but there are so many doctors in Neurosurgery, I assume they are waiting for other doctors. The receptionist checked me in and I barely had time to sit down before Nurse Practitioner A called me in, surprised I was alone. I texted J to head over (he doesn’t work too far away), but I wound up in and out of there before he even got to the hospital.

First, I saw Dr W, a resident, whom I’d seen in the summer. She is the one who’d been so excited about the good results of my gamma knife surgery in July that she almost stole Dr K’s thunder in telling me about it. Today, she scanned through the images, making encouraging sounds. I’d like to say that at this point I’ve gotten better at interpreting what is flashing by on the screen in front of me, since after all it’s my brain they’re looking through, but there’s a very good reason I still don’t entirely understand. It’s called medical school. I actually never went. And I never did a residency or a fellowship or a post-doc in neurosurgery. So I guess I can forgive myself for not understanding these things. I can see white blotches that worry me, when they don’t worry the doctor. And vice versa. It’s very hard for me to outsource my concerns, but there really is no other choice.

Nurse Practitioner A came back in, and then Dr K joined us. He asked how I was feeling. The truth is, I don’t know. Keppra makes me totally drowsy, the steroids make me strident, and I don’t know what has been making my vision kind of black out temporarily when I change positions, like go from lying down to standing or when I bend over to pick something up. I’ve gotten used to it, and I don’t pass out or fall over or anything, but it’s kind of baffling. Note to self: Mention it to Dr D (the ophthalmologist) next time.

After more flipping and flicking on the computer screen, through slices and slices of mortadella – which, let’s be honest, is what the layperson sees on the screen when an MRI is being examined – Dr K pronounced the one lesion that had worried him last month as now being free of swelling and bleeding, and it seems to have decreased in size. All of this a huge relief to me. J was texting me his location as he walked over, and Dr K said to text him that I was fine. He told me to knock off the steroids immediately and taper off the Keppra over a week’s time. I SHALL BE RELEASED.

However… Dr K then said, in his earnest Canadian way, he’d been very worried about me. He said that performing gamma knife in this situation had been “a gutsy move,” and that when he’d consulted with colleagues, many of them had said they would have opted to cut. I heard him comment to Dr W that even the dosage [of gamma rays, I assume] was kind of a wild guess. So once again, in the midst of a crisis, of illness, of everything, I feel lucky. Very, very lucky, to have found a doctor who didn’t go with the prevailing opinion, who took a risk, and had that risk pay off.

I finished my visit, was not charged a copay because it was a followup after surgery, and went down to the lobby to wait for J, who had almost arrived. It is unseasonably cold out today (haha) so I wanted to bring J up to speed indoors before we headed back towards the train. We sat in the same bank of armchairs I had sat in earlier, but the Satmar couple was gone – hopefully to a safe labor & delivery, or to bed rest, or anywhere other than the uncertainty that hovered around them when I saw them.

I told J what Dr K had told me. And then the floodgates opened and I cried. I was relieved. I was grateful. But also – it’s never easy, finding out your doctor has been worried about you. It makes me a little annoyed, finding that out after the fact (just as Dr P had concealed the extent of my lesions last April, until it was clear they were under control). I get it, but I don’t have to like it, as a patient management technique.

We headed out under the gray sky and walked back to 33rd Street together. We couldn’t even have coffee to celebrate, as I’d taken my meds less than an hour before. I kissed J and came home and made some kale instead, and had some of Young J’s birthday cake for good measure. So very glad I’m seeing my therapist tomorrow.

I’ll have another brain MRI in two months’ time. In the meantime, other than the daily cancer meds, and a visit with Dr P in early January, I may now resume civilian life. Freelance work. Job hunting. Normal eating. Exercise. Less yelling. Perhaps another attempt at weight loss. But I’ll be keeping my secret identity card in my pocket at all times. The cheat sheet with the knowledge I have won from all of these ups and downs. How you confront your mortality every eight weeks and stay (reasonably) sane.

A letter to Young J, one year later

Dear Young J,

I began this blog just before you turned 8. I marked that occasion here. And here I am, miraculously, to see another one. Today, Young J, you turned 9. Nine.

That's my boy up there.

We held a small party for you at a local climbing gym. The wall’s resemblance to the towers of the Brooklyn Bridge are not coincidental. We visited the gym a few weeks ago to see if you even liked climbing. You sure did! Young A was not so keen, and today he refused to harness up, as predicted (J happily took his spot, and I warmed the bench with Young A).

Just your inner circle was invited to this party – your school friends, some of whom you’ve become pretty tight with this year, and also your former neighbor and adjunct sibling, S, whose birthday party you attended last weekend. I’m so glad you two remain friends. S is the only girl you really talk to these days – I’m not sure if the girls at school are segregating themselves or are too mysterious or what, but I’m just so glad there is one girl you call a friend.

Young J, the ways in which you have grown and blossomed this year are astonishing. You’ve been working on your social skills for a while now, with therapists at school, and I feel like there may soon come a point where you surpass your peers in that regard. What then? I hope if that ever happens you won’t be too disappointed.

You get very irritated when J and I look at our phones. “Stop looking at your shiny rock!” you scold us. And every time, without fail, I feel chastened, ashamed. Last night, we attended a really great holiday party, and the kids were hanging out downstairs with all of the necessary accoutrements of the day: movies and electronic devices. I think you liked the movies, but it sounds like you were confused by the rest. When we were leaving, you said to me, quietly, “You know, it wasn’t much of a party. All of the kids were just playing on their phones and iPads.” My heart broke, a little. We’d been upstairs, having a lot of fun talking to new people, and you were not meeting anyone new and you didn’t have your own device, so that must have been hard. I let you box a few rounds with the punching bag before we left. I think you liked it.

Sweet Young J, things will get hard for you in the next few years. That’s just how things go as you become your own person. In the time we have left to influence how things go for you in life, I’ll try to set an example by pursuing my joy. By doing what I love, because it feels more like a vocation than my career ever did, and because what I write may have the capacity to help people.

There are a million other important things I want you to learn from me, of course, but I am well aware I may not have the time to get to them all, whether that is because your window of openness to learning will start to close, or whether my influence over you dwindles if my condition deteriorates again.

Whatever happens, you should know that in your whole life, I’ve never allowed you to go to bed feeling angry at us or feeling that we were angry at you. It’s something I’ve always insisted on. (Sometimes, that requires an eleventh hour bedside conference.) I make a lot of mistakes as a parent – sometimes it even feels like I make them hourly – but I am pretty sure you have never felt unloved. I think that loving one another is something our family does well. I think the problems arise more from an excess of love. We should all be so lucky, to have this as our problem!

Go forth, Young J, and keep conquering the world with your quiet presence, your winning smile, your gentle ways and your amazing writing skills. You play guitar really nicely too. I can’t wait to see what else you do.


Unclog the brain

Stumptown Coffee Roasters - Division, by Scott Beale/Laughing Squid on Flickr, licensed under Creative Commons

The past couple days, I’ve gotten a lot further in making my pipe dreams of being published in a more “real” (e.g. visible, remunerated) way a reality. I find it weird that it’s happening when I’m in the limbo state right before a scan (MRI of my brain on Monday morning!).

I’m never allowed to just be in limbo. Being in limbo the way I conceive of it is sort of like being in traction, something I am so glad has never happened to me. (It’s true! Even cancer patients can finger point at other things they are so grateful not to be going through. Not that pointing is ever polite. So pretend I’m saying it behind my hand to you in a whisper and jerking my head in the direction of someone in full-body traction. An implausible scenario, I know.)

So to recap: Not in traction. Yes in limbo, but the kind where I am feverishly getting writing done, writing I might actually be paid for (I’ll keep reminding myself to forget about that until I get a green light). And not even on a huge dose of steroids – just 2mg in the morning – so I’m starting to think this energy may be real, trustworthy, not a fleeting thing.

I also am hastening to remind myself there have been times in my history where I have written a lot, even if the audience was by definition limited. I wrote up a wedding recap for an online community I was on which practically took place in real time.

And because this Sunday is Young J’s 9th birthday, I have just pulled up his birth story (also lengthy, and also possibly takes real time to read, but that’s because my labor with Young J was super short). I can’t share it here – too gritty, too many acronyms to spell out, and in great need of editing! But it is comforting to see that while I currently have no clips to send potential editors, I do have a well-documented history of writing to process, writing to cope, writing to make sense, writing to not forget. I can read Young J’s or Young A’s birth stories – or my wedding story – and find myself right back in the scene. And sometimes that is comforting. And sometimes it is cringe-worthy and I’m happier where I am today.

I’m still new enough to the cancer universe to think I won’t forget anything that has happened, that I have been living such an intense experience it could never become blurry. I hope I get to stick around long enough to start forgetting what certain things feel like. So I guess all of this writing is in preparation, in the hope of, the eventual forgetting.


I’m strangely agitated right now – strange because I’m on a pretty minimal dose of steroids right now. Also, I should be happy because I have a potential paid writing assignment to work on. My first in my adult life, I’m pretty sure.

So I’ll just offer some recent photos. And you can add them up however you like.

If you figure out the answer, will you let me know?

Perfect birthday

It is shaping up to be a swell day. It’s 62 degrees outside. Once I manage to get moving, I’ll head to the botanic garden – alone – with a book. I get plenty of alone time during the week when the kids are at school, but there is something truly decadent about getting to be alone on a weekend day. J intuitively gets this. And he is ferrying the kids to their birthday parties today. Thank you, J.

The morning started a little earlier than I would have liked thanks to more unexplained wakefulness at 4 a.m. I fought my way back to sleep after an hour or so. And then it was morning. And then this happened:

The sweetest things

A sheaf of adorably drawn cards and singing and smiles and the most paradoxical thing of all – a delicious breakfast in bed, to be enjoyed alone, but with two excited boys bouncing around in the vicinity making it hard not to spill. Luckily they are a bit older now, and can be shooed away for a time. But I didn’t want them too far. I love them. All of them. I never thought when I started a family that I’d be this utterly outnumbered in terms of gender. Perhaps I feel a bit like Jane Goodall feels. No, they aren’t my same exact species… but I’ll defend them to the death.

Last week an artist friend issued an offer of customized infographics to anyone in our email group who would submit a list of words to him. One of the words needed to be an emotional state. I told him that steroids are definitely an emotional state. Here was the result. Thanks, Michael, for a clear illustration of my life at present. I am hoping some of the chart elements soon recede – just the chocolate can stay.

Infographic December 2015, by Michael Lewy (, posted with permission

Brief afternoon vignette

I didn’t sleep as well as I was counting on last night. Started with an interruption from Young A (coming in just to let me know he was planning to use the bathroom, then popping back in to say good night again – so very kind of him). I heard him yelling out in his sleep the night before, from something he could not remember the next day, so I guess I was on high alert last night.

I forced myself back asleep though. It is such a struggle. As soon as I am awake, the mind awakes. It cycles through and through things. Not what you’d think, either. Not the 4 a.m. questions, the existential ones. I wonder if I have heard back from emails I’ve sent, I think about things going on with other people, I think of jokes, recipes, trips.

It’s been unseasonably warm here. Because we may have entered the era of the unseason. I hope not. I can remember anomalously warm or cold days from when I was a kid, and recorded them in my diaries. (I’m a chronicler from wayyyyyy back.) So this morning, J took the boys out to play basketball. They were gone for a couple hours. I meant to join them, I really did, but I had lots of interruptions this week and was looking forward to making more of a dent in an Italian translation assignment I got two weeks ago and hadn’t really made much progress with. I finished a few more segments. I am transcribing video interviews, which means I need quiet and I can’t really do it when the boys are around.

I finally showered, and the boys trooped back in and we all went for pizza. Young J has become quite the gourmet, and now insists on a fresh mozzarella slice. Luckily, they still seem happy with one slice each, unlike at school, where they have each eaten two slices on pizza day for over a year now. The scalability of feeding these boys as they continue to grow – up and up and up – becomes a more and more real concern. They are not happy with cereal fillers, either. I’ve applied for a few jobs in the past couple of weeks. Hopefully something will come through. I need to work, we need the money, the boys need FOOD. So much food.

After pizza, J headed out on some unspecfied errands which I suspect have to do with my birthday tomorrow. I came home with the boys and asked if I could leave them here watching TV while I ran an errand. Actually, I asked whether they would burn the house down while I was gone. Young J answered, deadpan, “But we don’t even know HOW!” Good answer, kid. And in fact, they didn’t.

I walked just over a block away to a framing shop that seems to have been there since perhaps JFK’s days in office, if not FDR’s. They called this week to let me know my framing job was ready for pickup. I was picking up this:

The Other Side of the Great Wall of Fuck, by John Lurie

It’s our second print by John Lurie, about whom I’ve written here previously. I bought this one in July, while in the grips of some “scanxiety,” as cancer message board habitués like to call it. I sailed through those scans, of course. Then, in September and November, I had slightly more nebulous results. I’m still in the nebula, for now, until I get an additional shot of certainty (or doubt) on the 21st.

I had a short walk back from the shop, but they didn’t wrap the piece in much more than plastic. There was no handle on it. It was, to be honest, pretty unwieldy, and I was nervous, and I was carrying my latest handbag which doesn’t have a shoulder strap. But I have a long history of carrying awkwardly-shaped things long distances, and so I sauntered forth, awkwardly, avoiding even a hint of bicycles, not jaywalking, etc etc. Trying not to become a casualty along with my beautifully-framed art.

And maybe it was the Italian echoing in my ears from the work I did earlier, maybe it’s that I stand ready to recall distant past moments at a moment’s notice, but as I was preparing to cross Flatbush Avenue with my framed print, and saw a garbage truck splayed diagonally in the crosswalk in my path, I was transported to Florence, 1992:

I am walking home from a glass shop with my loathed (and a touch psychotic) apartment-mate, G (whom I was subletting from). She’d harangued me and my roommate H for weeks about how we needed to make sure we only ever had one window open at a time in the apartment, because a cross-breeze would make one of the glass doors or windows slam and shatter the glass. Who did this happen to, of course? G herself. The bathroom window – the one that looked out on the distant Duomo – crashed shut one day while she was alone in the house. It was awfully big of me to help her go to the glass shop, retrieve the pane, and WALK BACK HOME with it. There was not much padding, as I recall. It was pretty much just a pane of glass stretched between us, and the most efficient way to carry it turned out to be stretched across the street, as we walked IN THE STREET. Predictably, someone heading along on a Vespa almost rode through it. I do not know how we made it back with the glass intact, but we did.

So when people ask me how I put up with all I put up with, when it comes to this illness? I submit this sort of thing as evidence: I have been training for this my entire life. Faced with ridiculous situations, I find a way to emerge victorious. Or at least, to enjoy small triumphs. Like not having a Vespa crash through a new window, or not having a sanitation vehicle destroy my newly framed artwork. In other words, I make it to the other side of the great wall. But it is still The Great Wall of Fuck, and as such I would love to live to see the wall torn down completely.

A very special video message from I’ll Live

It’s my first video for the blog! It’s Chanukah! It’s my very first unboxing video ever!

If you don’t know what an unboxing video is, it is a newish genre that has sprung up, in which people film themselves unpacking items they have received or purchased.

I find it to be a strange kind of fetishization of packaging and materialism and it makes me really uncomfortable about the future of the human race.

Which is why I went and made one, when I saw I had received my latest shipment of trametinib this afternoon. I think I have the Decadron to thank. The camera work is handheld and poor. My delivery lacks a certain energy. And there is unfolded laundry in evidence. But here you go. I hope you like it. Or “like” it. Or just watch it and be baffled.

I’m not at all kidding about the carbon footprint, though. Perhaps others reading this want to help me start a movement to reduce the packaging? There must be better options for refrigerated delivery.