Quo vado?

-> by Martin Fisch on Flickr, licensed under Creative Commons

It is only 5:30 p.m. and I’m in bed. I do love my bed, but I’m lately unacquainted with it at this hour. Lying here as the kids watch their pre-dinner TV (currently, reality shows involving cooking and home fixer-uppering are in favor among the junior viewers of the house) reminds me of the bad old days, when I was in bed nearly 24/7, except for the middle of the night, when the steroids kept me from sleeping and I blogged furiously in the dark bathroom.

Lucky, lucky me today – J is home and can handle dinner. And I’m sacked out because I rode my bike a lot today – to the tune of 20, maybe 21 miles. This was my second “homework” assignment from the trainer I worked with a couple of weeks ago. I needed to do six or seven full laps of the park. I managed six today, leaving something yet to aspire to in the month remaining before my ride.

I confirmed today that my issues with biking have nothing to do with the actual work of pedaling – not even the hills are all that difficult anymore. My problems come from these Fears that seem to have cropped up now that I’m training for something big. Fears of falling over, crashing, failing brakes, drinking water while riding.

I didn’t even attempt to do the latter today. I was just proud I made it out at all, because it was rainy and cool and I had no idea what the weather was going to do. As my trainer suggested, I brought a snack with me. Two bananas, one tucked in each pocket of my jersey. I learned when I stopped for my break, a little past the halfway point, that bananas do not travel well in pockets! I needed the energy, so I ate them anyways. I’m not sure where I’d tuck a sandwich. Energy bars are the most ideal, packaging-wise, but so many of them seem like glorified candy bars when you read the label.

About halfway through my final lap, things started getting a little shaky. My grip on the handlebars slipped for a second and I felt like I might wipe out, even though it was just a minor wobble. I moved my head from side to side to make sure it wasn’t another dizzy spell coming on – nope. I focused on my breathing and got steady. I was almost out of water, though, and facing the last hill, I decided to stop before that and fill my water bottle.

When I met with the trainer, one of the things she did was raise my seat about an inch. I’ve noticed I am much more powerful now that I am able to fully extend my legs. However, I’m an inch higher, and still very awkward when it comes to starting and stopping. When I stopped for water, my exhaustion combined with the awkwardness led to a comical tumble. I was stopped already, and put a foot down so I could dismount, and instead the bike pulled me down to the ground. My left buttock and hand took the brunt of it, and both of those areas were padded with my recently upgraded bike clothing, so I only have a scratch on my shin and a few bruises. Miraculously, there was only one person nearby when I spilled. He asked if I was okay and I assured him I was, so he let me be. I felt like the cyclist in the opening of the Surrealist classic, Un chien andalou. (See the part starting at 2:30 in.)

I filled up my water bottle and decided to bike on the much quieter transverse road in the park for a minute, to settle my nerves before the final hill climb. After a little bit, I was feeling okay, so I went to turn around and head back to the main road. I couldn’t turn, though. I couldn’t organize myself to turn my bike! It was a little scary, suddenly not knowing how to do something that I’ve done for ages. Suddenly, riding a bike was not like riding a bike. I stopped, turned my bike around with my hands, and went on my way.

A similar thing happened about a month ago, when I first started training. I got back home after a ride, got off my bike, but couldn’t remember how to dismount. I wasn’t sure where to throw my leg in order to get off.

I mean, I’ve had brain surgery. Twice. They assured me it was safe and wouldn’t damage anything. And I haven’t noticed anything amiss, really, but this? This is new. And it sucks. Whether from cancer, treatment, or simple aging, it just sucks.

But, on balance, even with my imbalance, I’m happy today. I rode nearly the entire distance of our ride in June! I climbed hills multiple times! I spent almost two and a half hours on my bike and I can still move my limbs, sort of!

Tomorrow I’ll go to the gym and stretch everything out. Including my brain.

Making Me Understand: Nina Katchadourian

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 right now.

Nina Katchadourian went viral sometime in the past year or two. Maybe you’re not recalling her by name. But if I tell you that she was the face in and the brain behind these brilliant airplane Lavatory Portraits in the Flemish Style, then maybe that starts to ring a bell for you? When I learned about those, I knew I’d need to know more.

Last night, I had the chance to hear Nina present her work at the Brooklyn Museum. She was an engaging speaker as she took us through a survey of her work over 20+ years. Like her collaboration CARPARK which routed cars parking at a college to parking lots by color for one day – an aerial photo reveals what she said she unexpectedly found most delightful, the places where the system broke down, like the white car in the red lot. I’ve always been a fan of minimally confrontational public art, so this project was easy to love.

It turned out that the lavatory portraits are part of a longer series of works called Seat Assignment, which began when Nina decided that her flight from LaGuardia to Atlanta would not be time idly wasted, but time to explore the environment and make art out of it. She has been on over 180 flights since starting the project in 2010, and she is constantly adding to it. I love this commitment to not wasting a moment, even in spaces that are aggressively anti-creative ones. I also love the series Buckleheads, which shows us how to surreptitiously surveil our seat neighbors.

She spoke about another early project, Accent Elimination, that also resonated with me. In it, she and her parents (who speak heavily accented English) try to learn to speak with each others accents. She mentioned last night that she had never been able to replicate her parents’ accents, which is something I had also noticed in myself. So here my kinship with her began to deepen.

Nina has also collaborated with nature in surprising and hilarious ways. Last night, she spoke about her Mended Spiderwebs Series. I loved hearing about how the spiders rejected her contributions outright. She didn’t try to recreate the spider’s web in any authentic way – she used starched red thread. I don’t think she realized the spider would reject her work, the first time she did it. But it did, and she incorporated it into the piece. Her entire project was achieved in order to be rejected. It’s refreshing to hear about something like this, inhabiting as I do now a life in which the entire point is not to experience rejection (of my medication). Also a good reminder to stop censoring ourselves and keep working on stuff and not fear rejection (… by spiders, at the very least).

Towards the end of Nina’s presentation my jaw dropped as a moment of total coincidence happened, the way things used to line up last year when I was on Decadron and these crazy things seemed to happen all the time. This month, at the Exploratorium in San Francisco, Nina’s work entitled “Floater Theater” will open. This piece investigates and celebrates visual floaters, those things that float across your field of vision (which are actually little clumps of stuff on the jelly-like vitreous humour between your eye’s lens and the retina). I couldn’t believe it, because I’ve spent the past ten months worrying about crap in my vitreous and dealing with floaters (as side effect of my cancer meds). In fact, just the other day on this blog I wrote about getting the clean bill from the ophthalmologist, but I still have one floater which isn’t going away, not for a long time, and how I’ll just have to deal.

By this point I thought I was having some weird mind-meld with this artist with whom I felt so much kinship. And then she talked about a piece that is going up just a few days from now, at MassMOCA, as part of an exhibit about wonder called Explode Every Day. She’s making a film called “The Recarcassing Ceremony,” and it’s all about Playmobil figures she and her brother had as kids, and reenacts a ceremony they held to replace two figures which had drowned with two new ones. Playmobil figures are very much a part of my daily landscape. They are almost always underfoot, when they aren’t all arranged in a group for a concert or sitting on blocks that are bus seats or right on the floor outside my bedroom waiting for a train.

Following the lecture, even though a Q&A might have been fun (or deathly boring, as those things sometimes turn out), instead museum staffers dressed as flight attendants came down the aisles (the seats were arranged in two columns of four with a center aisle, reminiscent of a plane) offering us airplane items: mini bottles of water or cans of Clamato, packets of honey roasted peanuts, biscuits, lemon or lime wedges, coffee stirrers, plastic cups, and magazines. (I selected a Christie’s catalog because there were no mags.) We each had a board under our chairs that served as a tray table.

We got to work. At first I was totally, totally stumped. I didn’t need to top Nina’s brilliance, obviously, but I wanted to make something that made me happy. I tried using the lime but it wasn’t cooperating. I ate the lime, thinking the peel would be useful. It was sour, but maybe the jolt of Vitamin C was what I needed. First I opened up the peanuts and started halving them and then I found an image that would work:

Poseurs (Honey Roasted Peanuts Meet White Cliffs)

The peanuts are trying to blend in, to look as impressive as these white cliffs in Brittany. They aren’t quite managing. (Because they are honey roasted peanuts. Which in my estimation is one of the worst snacks ever.)

Then I found another image and it was time for a tribute to one of my early experiences of the avant garde, the film Un chien andalou. I thought of the iconic scene with the razor blade across the eye as I tried to balance the coffee stirrer on its side on the picture which was sitting on a board on my lap.

Homage to "Un chien andalou" (coffee stirrer)

I mean, I know it isn’t much. But then, this is Nina’s point: It doesn’t take much to look at what surrounds us in a different way. To turn something slightly, maybe only 15 degrees on its axis, and see what happens. I’m so relieved to be reminded of this.

Today is decidedly not going as planned. I was supposed to ride six or seven laps of the park on my bike today. Instead, I woke up dizzy again. I’m back in bed. It is a beautiful day, and I should be out, but I’m in bed. However, the lecture last night, and the tiny burst of creativity it brought to me, are keeping me from total despondency. Perhaps in another hour I’ll be able to prop my head up. If so, I’ll get my laptop and give that long-suffering essay another go.

Thumbs up

Another good day for scan results. No results day seems to resemble any other results day in the past. Today seems to have existed in two separate realities, possibly three.

This morning, after the kids left for school, I got on my bike. I had homework from the trainer I am working with in order to ensure I don’t bomb June’s ride. Today, I needed to repeat the hill in the park five times. When I got to the park I didn’t really know whether I could do it. I had a few tips and techniques from the trainer to go on. When I started I wasn’t thinking of the endpoint. I went around once, twice. In the middle of the third lap I had a moment of mild panic about whether I’d be able to finish. I needn’t have panicked. Each time, I climbed the hill in a gear I never would have imagined could work for me.

However, I am struggling with something that seems laughably basic to me – how to bend down and get my water bottle for a drink while I’m riding, and then put it back without crashing! The trainer worked with me on that last week, I seemed to have gotten the hang of it. Today, the first time I tried to drink while in motion, I nearly wiped out and almost took another cyclist with me. For the following laps I decided only to try drinking while cutting across the quieter transverse road in the park. Again I nearly wiped out (this time, while trying to replace the bottle) and the bottle fell to the ground and rolled away, so I had to stop and chase it down. Finally, I decided I’d just stop quickly to drink before each hill repeat. That worked much better. I need to practice more,  I think. Just a few years ago, I had no problem drinking while riding. I can even remember a moment where I was texting while biking, against all common sense! Clearly, those days are behind me.

I got home from the park with little time to spare before my visit to Dr. P. My main goal was to refuel quickly and appropriately so I wouldn’t show up there almost passing out again! When I arrived at my appointment, the waiting room was almost at capacity. My heart sank, because I had plans downtown after my appointment. J didn’t come with me today. And I had made plans. I treated this like any other checkup, not like my life was hanging in the balance. I had briefly considered the possibility that all might not be well. But I couldn’t seem to convince myself to take that idea seriously today. I’m so lucky I didn’t need to.

In the waiting room, I saw a woman with her daughter whom I’d met at a previous visit. She had begun seeing Dr. P. when she was pregnant with her daughter and gotten a diagnosis of melanoma. Today, I noticed that she is pregnant again. What miracles are possible, when the drugs work. (It is never far from my mind, though, that the drugs do not always work. This particular age of miracles is still far from universal. It is all too selective.)

Nurse Practitioner K saw me today. She burst into the room with the good news, and I almost knocked her down jumping up to hug her. It was the usual checkup – with an EKG added on, since one of my drugs carries the risk of cardiomyopathy.  It was fine, everything was fine. Even the side effects can’t touch me anymore. I know too much to feel truly bulletproof, but I am feeling relieved, like I’m a few notches closer to normal. My medications list, which Nurse Practitioner K reviewed with me, seemed extremely short. And it is! No steroids! No anti-seizure drug! No confounded eye drops!

I left the cancer center, bought a six pack of beer, and caught a bus downtown, to a Lower East Side gallery where an artist friend is working to create an installation that opens Friday. It is called FUCKYOURCOUCH. It’s a comment on many things, but I think primarily the frustrations of being an artist in the current economy, and a swipe at the art world. The couches came from Craigslist, giveaways. Some were already destroyed. Today, I and a couple of other friends were invited to avail ourselves of power tools, fabric scissors, seam rippers, an electric carving knife. One person brought a meat hook. We dismantled a very nice, made in North Carolina couch. It was impressive to see the construction, compare it to the remnants of an IKEA couch on the other side of the room. I’m excited to see the results when the show opens.

Because I’d just come from the cancer center, and gotten good news, and because I rode my bike like crazy this morning, I drank a couple of beers very quickly while deciding what to do to the couch. Then, I drank a third. Two beers is usually my limit. But there was relief, there was celebration, there was three more months of healthy life pretty much guaranteed. So it was a three beer afternoon. The joke was on me when I had to walk back to the subway – about 15 minutes, crossing lots of streets. However, I’m very good at pretending not to be drunk. I walk in an exceedingly cautious way. On a train, I try not to open my mouth so no one smells my breath. The biggest challenge today was climbing the stairs out of the subway without falling over, and I managed that, too.

J was home with the kids. They’d done their homework. J made dinner. I don’t know where we’d all be without him. I was so glad I had good news for him today, for him and the kids and all you beautiful people who remember when I’m getting results and cheer with me when they’re good. This cancer thing? I guess it can teach you about love.

The wind

It was a busy weekend. Yesterday more successful overall in terms of scheduling and stuff checked off the to-do list (kids newly shod with shoes in the correct size, then a very fun street fair).

Today, we were tired and couldn’t get a plan together. Young A had a birthday party in the afternoon, and it was over in Red Hook so I waited it out at the cafe of Fairway, the enormous grocery store located on the waterfront where On the Waterfront is set (though it was actually shot in Hoboken).

As I paid for my coffee, I overheard the two young people in front of me talking to the cashier. They were both wearing life jackets and shivering. They had just gotten off some kind of craft and when asked where they had come from, they said Florida. As I sat in the cafe reading my book, I looked up from time to time to watch them regaining their composure after what seemed like an ordeal. There were five of them in all, three men and two women. One of the women didn’t speak at all, just stared out at the water as she drank some soup. Eventually they went on their way.

All day today, the sky shifted from sun to cloud, from clear weather to spitting rain. It was much colder than it should be, mid-May. I imagined being out on the open water, how long it might take to recover from experiencing weather that way for days at a time. Not being able to count on anything being calm. No stability.

I have a CT scan tomorrow. I’m counting on no news as my good news. I’m hoping that Tuesday, when I go in for my results, I will not have the rug pulled out from under me.

If I do get bad or uncertain news, though, I’m going to show up having done something important that day – namely, Day 1 of my biking homework. I met a trainer last week and she handily dismantled some of my deepest fears about riding and about the specific ride I’m doing in June. The hills. I need to tackle hills. So before I see Dr P on Tuesday, I’m going to do hill repeats in the park. Five of them in a row. Then I’m going to shower, take the subway to Manhattan, and find out whether I get three more months tacked on to my lease.

Last night, I went out. J works most Saturday nights, and most of the time I wind up not making plans, and I stay home waiting around for him to finish working, but since he can’t start until 8 pm, he doesn’t finish until late.

Yesterday, my friend G posted on Facebook that she was planning to go to an exhibit of photographs by urban explorers – the people who like to go climbing in abandoned buildings and inside infrastructure that may or may not be legal to visit. It was being held at the Jefferson Market Branch of the New York Public Library, a gem of a building I had only been to once before. Our mutual friend R mentioned he would go too. I hadn’t seen either of them for ages.

The exhibit was interesting, although some elements worked better than others. You had to bring a flashlight to illuminate the photos, because the overhead lights were off and the rooms lit by LED tea lights. There were some video projections, and Phillip Glass’ Koyaanisqatsi played in the various rooms. G bought a beautiful watercolor and ink drawing of a bridge which was framed and seemed criminally underpriced. (I’d had my eye on it too, but we have practically run out of wall space.)

My favorite part of the evening, however, was the time I spent standing by a giant window in the upstairs reading room. The window was open and when you looked up, there was a midnight blue sky with white clouds, and when you looked down, there was all the illuminated bustle of the West Village on a Saturday night. I stood by the window for a long time, feeling the wind come through and listening to the sounds and having one of those moments which you pretty much need to have every so often when you live in a city like this – a moment that reminds you why you choose to live in a shoebox cheek by jowl with millions of others.

I’ve always been susceptible to wind. It changes me, sometimes it prompts me to ponder doing stupid things. The wind last night felt good, but it ushered in a gloomy front for me, and I’ve been pretty depressed all day today. Almost palpably so. Possibly hormonally so. The weight of it is so crushing I don’t think I could stand up to it for more than a day, which is as long as this feeling lasts. If the crushing feeling lasted longer, I might finally understand what drove my friend Sarah (of blessed memory) to cast it off.

I’m going to sign off now and go watch a funny show with J and then go to bed. But here’s a photo of the window I was standing by last night, the windy window. In the wrong light, you’ll think it’s all or mostly black. If you shut off the light (as I discovered last night) you’ll see the clouds, and then maybe you can conjure the sounds and the feeling of the wind. I hope it feels good to you too.

Night, from window of Jefferson Market Branch, NYPL


I didn’t let anyone down today. Not even myself!

I moved the car for street cleaning and didn’t even curse when I got stuck in traffic while doing so.

I then rushed home and got my bike and met my friend A. in the park for a ride. This is the same friend A. who drove us to the cancer center a year and a half ago, when I was in the midst of my wonder drug-induced colitis, so it was extra special to meet up with her on a much healthier plane. She wanted to check on a nest of cygnets, but they didn’t appear to have hatched yet. The geese and swans were having a turf war.

I came home, making sure to eat lunch and drink lots of seltzer immediately to prevent a migraine, because I rode a lot more yesterday, and went to bed with a brutal migraine. (It turns out seltzer isn’t the best possible option, though.)

I finished up preparing a presentation for Young J’s class, and I headed out to give it. It has been a year since I taught a class, and I have never taught this demographic, but it went very well. I wondered if I’d be nervous, but why would you get nervous in front of 9-12 year olds, some of whom you’ve known since preschool or kindergarten? I had fun. I made them laugh a little, and I taught them how to evaluate the results of their Web searches in order to make sure they are getting good, reliable information. It’s the sort of thing a school librarian would teach, but the school doesn’t have one yet. (One can hope…)

I finished up my talk, came home, started a pot of chili, and got back to school in time to pick up Young J (Young A had after school today). I was hitting all of my marks today!

Later on, while we ate dinner, out of nowhere, Young A asked where the rash on my back came from. “My scar, you mean?” Yes, he meant my scar. Young A is six. I was first diagnosed with melanoma when he was three. Ancient history for him – of course he doesn’t remember.

I started at the beginning. Surgery, radiation, recovery. Young A sat quietly and listened to every word. Young J, who has probably heard enough, tried interrupting by singing “Radioactive,” a song he likes by a group whose name refuses to stay in my brain. But for once, Young A wasn’t taking the bait. He was determined to listen. I kept going. I talked about being okay for a little more than a year, and then not being okay, and how the medicine made me very sick, and I couldn’t take it all, but how even so I got better! But then they found the bad stuff in my brain, and that’s why I am still taking the pink pills and why I had surgery in the special machine that was like a tunnel.

It doesn’t matter how many times I tell this story, it still sounds improbable and outlandish and Alice-in-Wonderlandish and space age. I wish everyone got to tell it the same way, got to experience the wonder and the hope that drove out the pain and the fear.

Then the kids asked how you get cancer. My own cancer is easy enough to trace the origin of, and it makes a damn good case for sunblock and hats on the young’uns (who have always been very good about these things). And smoking is easy to implicate in lung cancer.

But there are so many reasons and so many cancers and at a certain point, you might let Joe Jackson take over, because you can dance to it at least.

Word to your mother

Heart/soap (from Young A)

Happy Mother’s Day to the moms. All the moms, in every circumstance – joy, expectant excitement, exasperation, grief.

But I also wish an easy day to those who have to put up with this day, those for whom this day is a knife to the heart. Tomorrow will come, and the shop window displays will come down.

In the aftermath of the morning’s festivities, which included breakfast in bed and many lovely cards and wishes and heart-shaped soap, I am lying in bed, enjoying the quiet of the empty house. The plants I bought yesterday are out on the balcony waiting to be potted, and I think that this year, I will probably get to that before July.

(I am doing laundry, because I do it best. There are some truths that cannot be glossed over, even on a Hallmark holiday.)

I’m grateful I get to be a mom, grateful to still be around to get the cards and snuggles, and grateful I can pick up the phone and call my mom. None of these variables are guaranteed, and they won’t all be true forever. I’m happy for the right-now-ness. It can be ephemeral and still enjoyable.

I finished reading The Little Prince to the boys last night, can you tell?


Sure is gray and chilly out there. We’re stuck under a front that is stationary, unmoving, massive. An omega something or other. Not a good omen for my bike training, but that will need to continue regardless of the weather. J asked me last night what I want to do on Mother’s Day, if I want time alone. I may want to burrow under the covers and not get out of bed until noon, at this rate.

But! Being the Queen of Silver Linings, I do have some good news today. I’m back from the ophthalmologist, Dr D, who has been following my progress back from the medication-induced iritis and subsequent retina swelling, and then dramatically increased pressure in my eyes due to the steroid drops that were treating the condition in the first place.

As of today, my vision is normal. My pressure is normal, after a month with no drops whatsoever. I don’t need to go back for three months.

Which in most ways is good. The waits can be very long at Dr D’s, his staff are by turns friendly and surly, and the radio playing in the waiting room makes the ears bleed. Well, my ears, anyway.

Once you get into an exam room, there is dim lighting, no music, and this is your view:



I have complained in the past to Dr D about the music. He claims they tried classical music, but “nobody liked it.”

Today, Dr D decided he needed to know more about what kind of music I liked. I told him it was complicated and really, please, don’t worry about it anymore! And then he was looking for mp3’s on his phone and started playing a wholly inoffensive (= soporific) guitar thing, which he said had been used as the theme music to a Ken Burns documentary about the National Parks. “Hmmm,” I said, flailing around for something nice to say. “It sounds… Burnsian.” Okay, I guess that didn’t come out very nice.

But the pressure was down! In my eyes! Down to 13. Which is a good measure. And 13 has always been my number – it seems to come up a lot.

I went back out to the crowded waiting room, paid my copay, made an appointment for impossibly far-off early August, and headed back to the subway in the windy rain.

My legacy of the ocular side effects to my cancer meds, side effects which in the trial afflicted a mere 1% of patients? One floater in my left eye. It’s round, shaped like a lentil. It floats. When I want to, I can stare at a white wall and bounce it around as though I were playing Pong. It may be there forever, or at least (as I understand) until I get much older and my eyeballs are less sticky and it falls off.

It is better than a scar, by far. Weirder than a scar, for sure. But me, I’ve never been a textbook case of anything. Why start now?