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:

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.

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:

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.

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.

Yeah, my birthday’s coming up. Not the one in the photo – I’m turning 101100.

Why binary code all of a sudden? Because this birthday, all my birthdays from here on out, are anything but binary.

For some context, please take a moment to read this excellent op-ed piece by Adam Baer in the LA Times, on the nature of chronic illness today, and the feeling some people dealing with illness have – namely, the need to keep a positive outlook, sound strong at all times, and resolute in their determination to “beat this thing.”

My friend T sent the piece to me, for which I was grateful, but of course it made me stop to think. Am I also complicit in being perky-positive, in making things sound like they will be just fine? I certainly haven’t told anyone I am going to beat this thing. I know, as Mary Elizabeth Williams does, that our odds are… well, odd. Yes, I did wear a KILLIN’ IT t-shirt to radiation over a year ago. Was that wrong? It felt right, then.

I don’t feel like wearing the same shirt these days when I go in for checkups. There’s a reason for it, though – my treatment doesn’t feel much like treatment these days. It feels like a lifestyle. Which is precisely the point of Adam’s piece:

Chronic illness is normal. We have to get cozy with that notion and keep the medically stained from feeling cast out from society, left to wince and wonder in private until they’re ready for some grand reemergence.

I think more than anything, I’ve tried to present my situation, my very frustrating and very changeable situation, with mordant (and sometimes very dark) humor. Humor is what sustains me. Is that weird? Am I being insincere? I’ve been in the care of a therapist since July, and according to her, I seem to be doing pretty well. I sleep well and without anxiety (off steroids, that is – and I continue to taper off those).

So perhaps in my case, laughter is the best medicine? One of the hundreds of supportive messages I got on Facebook when I was first diagnosed with melanoma was something like, “Melanoma hates sarcasm – deride it, Deborah!” Indeed, that is precisely what I have tried to do.

But I get serious/sappy/sweet too. It’s pretty hard not to. I love this world, as fucked up as it may be, and the idea that I might wind up leaving it even half an hour before I was meant to does not sit well with me. So I’ve tried to leave a fossil record, here on the blog, of how much love I am fortunate to have in my life. How much love, affection, understanding, support. How many people who have been there when it was needed, sometimes in ways they could not even have anticipated as being important.

I’m looking forward to this year. I applied for a job today, and another one last week. My brain still works, my body is reasonably healthy. This is how to count your blessings when you have a chronic illness. You don’t skip over the basics. So the whole thing can take a while. But when you have a chronic illness, you have the time for that sort of thing.

PS I showed up for my checkup with Dr P yesterday and found an empty waiting room.

It felt miraculous. For a moment I convinced myself that a great miracle had happened here, that all had been cured and I would soon be leaving as well. I even showed the photo to Dr P, who laughed with me. It was magical thinking, or it was a joke, or maybe a bit of both. Either way, it helped.

It has been a weird day. I was up around 6 a.m., not terribly early, but earlier than I would have liked. I had a pretty bad latke hangover – last night the holiday started and we really celebrated. Fried food, chocolate, etc etc.

This is a big month around here – birthdays (in fact, by the Hebrew calendar it is mine right now, and by the English one, very soon), Young J’s birthday also very soon, Chanukah, and the general dopiness of December. Which so far is devoid of snow or even the slightest whisper of snow, and I hear from the kids that this is not okay with them.

At some point during the morning lull, after the kids left for school, before I showered and tried to make something of my day – I have a pending freelance Italian translation job to do, but the deadline is malleable – I paused and reflected that December 7 is not just any other day. It is one anniversary, but of many things – of murder on a massive scale, of provocation, of the inexorable sliding of a geographically isolated nation into a global war. Why does this all sound a little too familiar?

I’m worried these days. The world has me more worried for it than for myself. Because what is happening in the world will outlast me, and will be bequeathed to my children, my poor children, who have no idea what is happening in the world, beyond some extremely filtered headlines I spoon-feed them when I think they may be receptive and not overly anxious already. We do not subscribe to any current periodicals. We do not consume television news. And so the kids know what we tell them, and what little they hear from their friends. Young J knows that ISIS had something to do with a helicopter buzzing past when we went to N’s house once for Shabbat (it didn’t, actually).

It made me sad to see so little recognition of Pearl Harbor today on Facebook (which tends to be my primary interface with news headlines and the collective and individual psyches of my friends). It’s not just the doomed-to-repeat-it trope, it’s that in turning our backs on an event like Pearl Harbor, we miss not only the horror of it, the magnitude of the event and its implications – we also miss any type of courage or solace we might draw from the fact that there was a moment in time that it seemed like the world might just end for us, and that the fact that it did not is something that bears remembering and repeating. That does not mean there was not suffering. That there were not many more losses. That there were not very grim years to be gotten through.

I plan to read some of the letters described in this article, posted to a website by a family who felt that this time period was worth preserving, that there were lessons in the letters beyond just the interest of their own family. I’m so grateful to learn that these letters exist. In my own family, there is a collection of papers and letters that remain to be reckoned with, which I am pretty sure has value to researchers. I’ve made my own attempts over the years to try and get them to the right place, but it’s not in my hands for a variety of reasons, and it frustrates me. Not just as a librarian, but as a sentient being who feels that the ability to reach out and touch the past, or even to reconstruct something entirely from it, as in this Yiddish theater production J and I saw over the weekend (which was entirely reconstructed from archival materials), has merit.

I want to believe that I’ll leave my own papers in order when I go, but I’m not off to a very good start. I’m not entirely sure what to do with drafts of hundreds of poems spanning over twenty years, or with journals I may or may not wish to have read when I am gone. It would be good to have some advance warning that the final hour approacheth, so we could find a beach and build a big bonfire on it and have everything paper just go up in smoke. (Knowing myself, I would also insist that those gathered make an opportunistic s’more.)

Sorry this post is quite scattered. I’ve felt that way all day. Fugitive headaches, sleepiness, muscle aches, inability to focus. It’s most probably the steroids and the anti-seizure meds messing with me, but I’ve been pretty wrong before. Nothing like a sneaky, almost-asymptomatic disease to make you second-guess yourself. I’m seeing Dr P for a checkup tomorrow, so at the very least my bloodwork should reveal any anomalies.

I keep coming back to a weird exchange I had with a Con Ed worker who was halfway down a manhole today when I walked out of my building after a brief power outage (which happened, naturally, just as I was getting down to work on my translation project). I asked if it was his work that caused the outage. “Yep,” he said. He asked if the power had come back. “Yep,” I said. I asked him whether it was likely to happen again today. “Probably not today,” he said, and it was unclear if he was smiling or not. I didn’t know what to make of that uncertainty. “That’s great!” I said, mock-cheerfully, turned on my heel and went on my way.

No guarantees, no warranties, no year-long leases. I’m not trying to live like tomorrow is another Pearl Harbor. But I’m not trying to forget it ever happened, either.

I feel totally rejected. Dejected. Ejected. It’s my second day with my Decadron dose cut in half, obviously. This means I’m not functioning at top speed. In fact, I am barely able to do much at all, other than send emails to neighbors complaining about noise that began at 6 a.m. which they apparently did not cause (still no clue about where it came from), causing neighbors to reply semi-indignantly to the apparently incorrect accusation.

But I did do something today. Many things. J and I were both up early so we made a good breakfast for a weekday (J’s awesome home fries, and eggs). We had a reasonably nice meal with the kids. And I managed to get ready to go to the gym and went there after dropping off the kids. I let them just run in again – have possibly given up on the CGKC (Campaign for Greater Kid Civility), now that the steroids are on the wane.

At the gym I did some half-hearted abs things but mostly stretched, staring up at the ceiling and trying not to fall asleep on my foam roller. Wednesdays are a kind of a self-guided class so falling asleep would have been totally fine. Except I’m still stubborn enough to want to try to get my money’s worth. The gym owner, M, invited me over to try the latest thing – using a superball – yes, the super bouncy rubber thing that is the bane of every apartment-dwelling parent’s existence, to loosen up tight hamstrings. These are to replace the Pinky balls which had been in use at the gym but which get too loose after a while. I tried the superball on my hamstrings, and it was fine, but ultimately moved it to the soles of my feet, and OHMYGOD I could have stayed there all day. So, so good. I consider that my major accomplishment for the day, loosening up my very gnarled feet. At the end of a session at the gym you’re supposed to feel really sleek. Today I felt like a jar of this after my workout – and it was fine.

I came home and took my meds. All I wanted to do was eat, just like the past week or two, but I can’t eat for an hour after taking them, so I went to sleep instead. When I woke up, I was starved and raving. J and I went to lunch. I cannot eat enough carbs and sugar. And I feel lousy when I do, but not lousy enough to stop. I know this will pass, and I’ll once again have healthy cravings, but for now I’m just rolling with them. We did some errands after lunch. I still have enough steroids in me to make to do lists. But I was simply exhausted when we got back. I got back in bed and slept deeply until it was time to get the kids, then rolled over and kept sleeping while J went to pick them up.

I woke up to the news about San Bernardino, and almost kept on sleeping, pillows over my head. I don’t know what the world is coming to. And this is something we are saying to ourselves every day now.

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

When it was time to leave for our drive back north this morning (much later than we’d planned, owing to late night/hangover concerns), I was all set to do the first half of the drive. The way this usually works is, I drive us through Maryland and Delaware, and by the time we’ve crossed the Delaware Memorial Bridge, before we get on the New Jersey Turnpike, it is lunchtime, and we leave the highway and eat lunch at an improbably good Chinese restaurant in the middle of nowhere, which we found exactly a year ago, on our drive home from Thanksgiving, and have been stopping at ever since.

The drive. In my heart of hearts, I really didn’t want to do it today, my half, but J gets so agonizingly achy when he has to do the whole thing (car ergonomics were never considered for the likes of us tall folks), and I didn’t have any medical reason to exempt myself.

I knew I needed a good song to kick off the drive, but I didn’t realize choosing this one would permeate me with such conflicted feelings that I’d cry my way out of my parents’ apartment complex and all through the merge onto the highway.

In my family, I’m the one who doesn’t live close by. I lived close by for quite a while – going to college in state, moving back in with my parents while I went to grad school at same place, being in a front row seat as their parents declined in health and mental faculties and passed away. It was hard, really hard, after four years mostly away from home. And there was the need for my parents to learn to think of me as an adult. And my need to learn to act like one. It was an intense time. But – I think – we managed.

After those two years, I left. And even though one of my brothers never left, and one did for a long time but returned… I didn’t come back.

I’d been wanting to live in New York for a very long time, at least since I’d gotten hooked on it through early Electric Company episodes, where they weren’t exactly making the city look like a verdant paradise. Heyyyy youuuuu guuuyyyyyys! was my destiny. In seventh grade, I saw Rear Window, and that sealed the deal (even though it dealt again in the type of city most normal people would not like to inhabit, wall-to-wall paranoia and your neighbor turning out to be an actual murderer). I had never, and probably have not since, been so sure of anything in my life, as my need to live in New York.

And I live in New York. And I’ve built a life there, with my two hands and J’s two hands and our boys’ four hands and all of the helping hands along the way. I’ve even built a life there as a cancer patient, and my dad acknowledged recently while we talked on the phone that on balance, it was a very good thing for my treatment indeed that I live where I do.

That doesn’t mean it is easy to leave, when we’ve been to visit. I saw a lot of dear, dear people this weekend. We spent a longer time visiting than usual. My parents. Cousins and aunts and uncles and friends on Thanksgiving. My brothers and their spouses and kids and dogs. A day trip to splendid Shenandoah National Park. And to cap it off, last night, an unprecedented gathering of whoever was around, and well enough and not previously committed and, frankly, brave enough, to come out to the shabbiest bar imaginable, which I seem to cleave to as a vestige of the lost Rockville, Maryland of my youth. I truly enjoyed myself. I adored seeing everyone. I drank with abandon. I did something usually unthinkable for me, and ate a diner meal at midnight with J and some friends from junior high.

And then I woke up today and needed this song to get me driving. I didn’t count on how sad it would make me, but it felt like permission to separate from home and go back to my handmade, hard-won life back… home. I couldn’t do that if my parents hadn’t let me “do my thing” all those years ago.

There’s a lesson in this for me, as a child and as a parent. I’m still on the steroids, dropping my dose tomorrow, so being in this enclosed space of the car with the increasingly-bored kids has been a challenge. For this second part of the drive, I decided at some point (or maybe J decided it for me) that I’d need to just tune them out. So I did. I’ve been writing this instead. We’ve still got an hour left – the last 18 miles takes a whole hour on a day like this – but I’m definitely feeling more serene.

Do Your Thing, by The Clean

Do your thing
Do your thing

Always someone to put you down
Always someone to drag you out

Stuck in your head with lies
Stuck on your life

Just do your thing
Do your thing

You’re so PC you’re a hypocrite
You’re just as real as the ideas you feel

Career crawling with no heart
When it removed this old part

Do your thing
Do your thing
Do your thing

You’re not too young
You’re not too old
You’re not too weak
You’re not too bold
Just do your thing

Last night I had friends and family meet me at the oldest bar in Rockville, Maryland. It was grand. As it tends to be when you get together with people who know you from pretty much every stage of your life, from birth to elementary school to junior high to high school to college (all phases were well  represented). J was the person there who has known me for the least amount of time. There was a surprisingly good bluesy band playing, and we cut a rug to “Mary Had A Little Lamb,” which J told me he’d played with his band in college. A late-night run to a diner with friends from junior high completed the night and took the edge off – I had four drinks last night, which I think is a personal record, on or off steroids. I don’t feel half bad today, but I haven’t started driving yet.

Earlier yesterday we visited each of my brothers and their families – one on each side of the Potomac – and the kids had such a lovely time playing with their cousins and the dogs and jumping on two different trampolines.

Today we battle the highway to get back home. It may take hours longer than anticipated. I’m carrying with me such a full and happy soul… which may prove even more useful than EZ-Pass.

In the Facebook version of this day, which is one valid version, we went to Shenandoah National Park, claimed our year-long Every Kid In a Park pass (thanks to Young J being a fourth grader this year, when the program was created), and hiked to the end of this trail. A stray Lego person had hitchhiked a ride with us, so we also documented with photos his own parallel adventure.

In the warts and periods and all version I post here – none of the pics of the kids, all of the angst. Or maybe just some of it. After all, given the couple of weeks I have had, it was certainly exhilarating to find myself in a spot where I was able to take a photo like the one above. I was happy to have made it, as I was happy to have made it to a much higher elevation, back in June, after the same surgery trajectory.

But when we got to the rocks, my exhilaration turned pretty quickly to fear. I was suddenly unsure on my feet, of my feet, my polarized sunglasses were making it difficult to see, the backpack I carried was throwing off my balance, and there were muddy patches here and there among the rocks. The boys scrambled across the rocks like little goats. But they are no goats, and there was no guardrail, and within a few short minutes I had sat down on a rock and started freaking out that the boys were going to fall off.

So there you go – nature vérité. Steroids + brain surgery + a rocky peak with inexperienced climbers + knowing they zapped close to where a blood vessel is that supplies the foot? I didn’t stand a chance, really, to have anything approximating a normal time at the summit.

When I was climbing back down as we were leaving, I let myself slide and stumbled and finally collapsed in J’s arms, sobbing – in part, relief that none of us fell off that rocky place, but in larger part, sobbing for what I manage to become in just a couple short weeks of renewed medical drama: strident, dependent, unsure, lacking any confidence. I know I have been here before and come out of it. I know I may be here again. So all there is to do, really, is own it.

To make up for it, we did see a black bear in a tree. From a safe distance, from our car. So thanks, nature, for offering us our first bear sighting in the wild, as recompense for scaring the shit out of me earlier that afternoon. I’ll try to keep the comfort of a nearly-hibernating bear being watched and cheered on (and not shot at) with me now, as I attempt to sleep.

I didn’t want to let this day pass without expressing my profound gratitude to all those who follow my blog and my story, whether we have met, or not.

It has been a comfort and a joy to have an audience and a cheering section and just knowing you’re out there, reading things even I am occasionally surprised to find myself writing!

I wish you health, happiness, and the wisdom to tell the two apart. Be able to revel in one, even when the other temporarily goes missing.