Side effects checklist


The thing that should not be II, by William on Flickr, licensed under Creative Commons

It’s been quiet around here, I know. I’ve been gritting my teeth for a couple weeks because of foot pain. I went to get that taken care of on Monday (after my session with the shrink), which was nice, but in the manner in which things seem to happen to me lately (e.g. all at once), I was up at 5 a.m. that morning with a pain that felt like a literal stabbing. Through my right eye.

Even though it had been a while since I’d perused the list of possible side effects of dabrafenib, I was pretty sure I had something like uveitis. It was a very sunny day, and I couldn’t possibly put my contact lenses in, which meant I couldn’t wear sunglasses, because I don’t have a prescription pair. I stumbled around the transit system and the sidewalks, keeping my right eye closed and trying to control the pain with Tylenol. At some point I spoke with Nurse Practitioner K and she told me to stop dabrafenib until I got my eye sorted out. However, unlike other times when I have presented with symptoms that may be side effects, this time she didn’t tell me to come in. Because she isn’t an eye specialist. I called my eye doctor and was told he didn’t see patients in the office on Mondays, so I could show up at 10:30 the next day and see if he could squeeze me in.

I kept my eyes closed through most of my session with the shrink (not a bad thing to try, actually – really turns your focus inward, removing the nonverbal feedback you might get from the person you’re talking to). Dr O was kind and turned off the overhead lights and switched on some floor lamps. As usual I cried and it felt like the tears might have done some good in terms of flushing my bad eye out (in reality the effects are negligible). I was able to open my eyes again for the last few minutes. Then I emerged into the fluorescent hallway and was blinded anew.

I had left myself an hour to get from the shrink (midtown, far East Side) to the podiatrist (Brooklyn Heights). The 4 train screwed me up. All the trains on that line were screwed up. I managed to get some phone signal at some point to call and inform them I’d be late. Mostly, I sat squinting through my left eye, keeping my right eye screwed shut, trying not to whimper because it hurt so much. I must have been a sight. At least I had a seat.

Got to the podiatrist, he got right down to business shaving down my dabrafenib-induced calluses while we made small talk. It was almost relaxing, except for the blinding lights. I have a friend, L, who has extreme sensitivity to fluorescent lights – they cause her migraines – so I think I have a rough idea now of how that must feel. Terrible. (Maybe by the time I’m through with all this, I will be able to empathize with sufferers of everything. I’ll be a walking encyclopedia of how different diseases and conditions feel.)

Once I staggered home, I knew I wouldn’t be able to do much. I got in bed and took a nap, I think. But I needed to wake up to get the kids from their camp bus. Somehow I managed, this time with sunglasses, but without any vision correction. I sat on a bench and pretended everything was fine while I waited for the bus. I considered for a moment that perhaps I’m getting too good at pretending everything is fine. (That’s where the therapy comes in handy.) I summoned J home as early as he could make it, and he made dinner. My prince.

J went to play basketball and I found myself alone with the kids and actually feeling a bit better. We played with Legos on the living room floor. My eye was feeling much better, which meant I could pay attention to how uncomfortable it is to sit on the floor at my age. Young J had invented a game where we took the Lego minifigures and paired them up with random accessories and told stories about them. It was a lot of fun. I need to give the kids more moments like that. That really needs to be my focus. It’s much easier to think that way when I haven’t also been the one getting dinner ready, etc.

Tuesday morning, I dawdled in the house. The eye doctor’s office had told me to show up at 10:30 and that maybe I’d get seen within a couple of hours. At 10:10, I was just about to pop into the cafe to get an iced coffee and something to eat while I waited, when I decided to call the eye doctor, and learned I had an actual appointment at 10:30. I can’t actually run these days, but I walked with conviction to the subway, got a train quickly, and managed to get to the doctor by 10:30 on the nose.

My eye doctor, Dr. D, has one of those wacky medical offices that seem very common in NYC – tiny exam rooms divided oddly due to space constraints and history, and every available surface chock-a-block with the doctor’s particular obsession – in this case, African sculpture. I sat and waited in one exam room, with a door behind me wide open that led to the next one. (Good thing confidentiality isn’t as huge an issue in ophthalmology?)

After the assistant took notes on my complaint (slowly spelling the word “oncologist” out loud to coach herself until she finally said, “well, good enough!”), Dr. D swooped in. He’s a big but gentle man. He was angry that his staff had not told him about my distress call the day before, saying he would have seen me in his office after hours, had he known. “Your pain is important to me,” he said, earnestly.

I filled him in on my story again (because I’d only seen him once before, a few weeks before my brain went haywire), and it seemed to affect him. He told me he’d just lost a patient the day before who had a primary brain cancer. He checked the pressure in my eyes and found only the right one slightly higher. By the looks of things, he told me I’d probably had this problem for about a week. I thought about all the consecutive days in the previous week I’d been wearing my contacts, possibly making things worse, but kept my mouth shut. No use dwelling on that. I tried a joke: “So, am I losing just one eye or both of them?” He was taken aback and told me I’d lose neither one. MENTAL NOTE: No joking with Dr. D like you do with Dr. P.

I still wound up in his office for a long time, because my eyes needed a chance to dilate. I called Nurse Practitioner K and filled her in. I called my mom. Dr. D finished my exam, and I asked him on behalf of Nurse Practitioner K to please fax a note. To my surprise, he said his transcriptionist would take too long, so he asked for the phone number and called right then and there. I don’t know who he spoke to nor whether the conversation went well, but I did hear him say at one point, drolly it seemed to me, “Well, the eye is part of the brain!” I was hugely impressed that he took it upon himself to call. You don’t see that too often these days. But then, this man is hardly in an ivory tower. I asked whether he’d be retiring soon, and he said no, he still had years of tuition to pay. As a parting gift, he gave me a pair of sunglasses usually reserved for cataract patients, and which cost him ten dollars a pair. They slip right over my regular glasses and are less unattractive than I expected. Still, I went to Warby Parker today to order some prescription sunglasses. I’ve been needing them.

I’m not sure where to situate myself right now. My checklist of symptoms are all attributable to the cure and not the cancer. “Chicken skin,” and little benign moles popping up here and there, and susceptibility to sunburn, a cough (I’ve never actually kicked the one from late June), and now iritis. Did I mention the sore throat? Can you be a hypochondriac if there’s cause?

I am feeling like a pincushion right now. Or a voodoo doll. I can’t think who’d hate me enough to have made one. Or perhaps I shouldn’t think about it? In any case, if they’re that far gone there is no making amends!

So it just has to be one foot in front of the other for now. That doesn’t make for a very interesting dance routine, I know. But better than jogging in place. Not sure yet if I’ll read this piece in Cosmo about life after cancer, because I’m not sure I want to know. Maybe you want to, though.

Poetry break

Splenic vein, from The Anatomy of the Veins, by Rob Swatski on Flickr, licensed under Creative Commons

Sorry I’ve been quiet for a few days. I saw my shrink on Monday, and I’m not going to lie, things are getting very real in there. We’re starting to get to the heart of the matter. My shrink not only works with cancer patients and PTSD sufferers, she has survived lymphoma herself. So she’s a pretty heavy hitter in this particular realm. (Thank you so much, K, for recommending her to me.) Good scan results are good, yes. But – getting past the initial goodness – there are boatloads of uncertainty, fear, anger, self-criticism, and God knows what else, to unravel. I have a good coach.

I’ve been working out a lot this week – three days in a row, which gets you to the point where you don’t know where each particular hurt comes from because they seem to be multilayered. It’s good, muscle-developing pain though. I’m glad to have it back.

It’s not entirely my choice, to be suddenly exercising this hard. My period will arrive any second (and I already know how much my father loves reading about that), and if I’m going to prevent the unwanted guest of a migraine, I need to bust my ass at the gym, often. It’s the only thing that helps, which I say because I once took one of the migraine pills my doctor prescribed, and did not enjoy the feeling of a prickly caterpillar crawling up my face. Eesh.

Despite the exercise, by late afternoon I was in the grips of a pretty bad depression, almost tropical, almost like a weather system. I observed it and asked J to excuse me for a while (meaning he made dinner) and just lay in my bed unable to move, almost. There were multiple reasons I gave myself for feeling this down, but it all comes back to hormones. I’m hoping this resolves in the next day or so.

I’m lucky, though, that I’ve had these few hours to lie around feeling totally flattened. Because it made me remember the first line (“Quand le ciel bas et lourd pèse comme un couvercle…”) from this Baudelaire poem, which I spent time studying both in high school and college. The site has a number of different translations of it, so you can choose the one that resonates most with you. If you want to hear it in French, here’s an over-the-top rendition:

Moral: Poetry can save you, if you let it.

Now what?

Box with scared people illustration, by Fritz Ahlefeldt-Laurvig on Flickr, licensed under Creative Commons

It’s so tempting to be relieved when you get good news. It carries you for a few days. Maybe a week if you let it be the excuse for a good party. You shove all the scared people in the box and put it in the closet for a while. (By the way, I’m really loving the work of this illustrator I discovered on Flickr.)

But it’s unsatisfying, ultimately. Don’t think for a second I’m ungrateful. Of course I’m grateful, for every second more I get to spend alive and reasonably healthy (although Young A’s metric for health these days is: Can you play tag now? If not, then you’re just not healthy enough for him, sorry).

I need to be able to celebrate good scan results for five years before I’m no longer going to be followed so closely. That’s a lot of scans and a lot of years. I will start taking my health for granted, and you will too. I won’t need to write a blog post after each good scan anymore. Or, I’ll get bad news and have to go down the rabbit hole again. All of this is so Magic Eight Ball.

There aren’t any guarantees. No one offers me a warranty anymore, or even a one-year lease. I might become one of those chronically sick people. I might have to settle for never being off medication, and I might have to accept the damage that being on medication has done to my former self-image (the one that still torments me and makes me feel unsatisfied with the small successes).

Sorry to make it sound like I’m riding on a bummer. The fact is, I’m not, really. Maybe this way of living is perfect for me, this inability to do long-range planning, because I’ve honestly never been good at that in the first place. I’m an optimist at heart (though a very cynical one) so maybe it’s time for me to read Candide or something. Get my mind off everything. Disappear into books, like I did as a child.

For now, I’ll just get out of my pajamas.

Full-on breath of fire exhale

Fire breathing/Shakrain festival 2015, by Rakib Hasan Simon on Flickr, licensed under Creative Commons

All is well on the CT scan. All hugs all the time. Nurse Practitioner R is 22 weeks pregnant and starting to show, and feel the baby kick. She is good at delivering kicks too – in the ass. “You’re tired?” she said. “You’re fine! Get over it! Start moving again!” I’m sluggish in the wake of no steroids, apparently – even though my last dose was six weeks ago.

She informed me that the weird little things that have shown up on my skin as a result of the dabrafenib can be removed by my dermatologist and it won’t be considered a “frivolous” cosmetic procedure, since these things are a result of drug therapy.

J and I had lunch and then came to the Morgan Library, where I’m meeting a friend for coffee soon. But I’d never actually visited the place in all my years in NYC, so we just took a very quiet walk around his library. In counterpoint to how I feel (like screaming and shouting from the rooftops), I quietly padded around on the rug looking at Mozart and Beethoven manuscripts, letters from John Adams and Thomas Jefferson, and one of the three Gutenberg bibles in the collection here.

Now, though, I’m heading upstairs to see a special exhibit on 150 years of Alice in Wonderland. That has been a book very close to my heart, ever since my dad and I read it together when I was seven or eight. And I’ve thought of it often in the past 11 months, when I’ve had treatments that don’t seem all that different from the EAT ME cakes and the DRINK ME potions that transport tiny or enormous Alice to previously unknown worlds.

I’ve encountered a lot of interesting things on this journey, but I wouldn’t be sorry at all to have it be at an end.

Partial exhale


I got some good news from the MRI today: The images on the screen are still not x-rays of beetles! Also, my tumors all “shriveled”! A resident who was in to see me before the doctor was having a hard time suppressing her excitement at the good news, finally removing herself from the room “before I steal Dr K’s thunder.”

It was a long, weird day. The CT scan was first, and I had to fast for that. Then I had to drink down a whole bottle of barium sulfate. I’d photographed it before, but today I chose to photograph something one step removed: another patient who was photographing his bottle of barium sulfate (image altered to protect his privacy):


I barely flinched when the IV went in today. I’m a good little cancer patient now. I don’t get teary or anxious. I get to keep all my own clothes on during scans because I know not to wear any metal. Today I realized the person who tells you when to hold your breath over the loudspeaker is in fact saying it live, it’s not a recording, because it was a different voice today. The technician in the room asked me the usual questions, like if there were any chance I could be pregnant. He actually pantomimed a pregnant belly with his hands, which cracked me up.

Unlike last time when I had a scan double-header, this time I knew to ask them to leave my IV in. They were fine with it, and covered it up for me, but it was mighty uncomfortable. And it felt like I was concealing something as I walked around waiting for the MRI.


I have a secret.

I was able to drink water, but since I didn’t have any break from the cancer drug today, I had to figure out timing for when to take it, respecting the two hour moratorium on eating before and one hour after. That meant that, even though I was starving from not eating anything since yesterday around 8 pm, I still had to wait to eat. So I spent the time between scans walking around looking for shady benches. I found one by the hospital, then tired of it because there weren’t any trees.

I showed up early for the MRI and they saw me right away. I wore all my own clothes in the machine today, opting only to take off my shoes. There was classical music playing (and I made sure that they’d actually paid for a subscription to Pandora so my ears wouldn’t be blasted off with ads, like last time). But I couldn’t hear much today – not even the announcements and questions they were asking me over the intercom. To tell the truth I think I was half-asleep most of the time (the scan took about half an hour).

The only moment I came even close to crying today was when a mom had to bring her son in for an MRI. He seemed to be about ten years old. He was putting up a brave front in the outer waiting room, but once they took him in alone to prep him for his scan, he was just screaming. I sat in the waiting area next to his mom, and tried to think of something to say, but I’m not on steroids anymore, so I let the urge pass. Besides, I really had nothing useful to say. I know for sure I’d be a complete wreck in the same situation. Poor kid. Poor mom. I hope they’re doing better now.

After leaving the MRI place, taking my cancer meds and having to wait an hour to eat and longer to see Dr K, I walked up First Avenue and passed this ravine, which occupies an entire block, seems to be unclaimed by any real estate concern, and houses a homeless person’s encampment:


I couldn’t see anything wrong with the place this person set up camp. There was shelter, transportation (a walker) and even a clothesline. A view of the East River and natural features (the bedrock of the city, Manhattan schist). A flagpole with a flag.

I walked a block north and was in the shadow of this iconic building:


Which, because I am an incurable Hitchcock fanatic, immediately brought to mind this scene from North by Northwest:


I wasn’t exactly a case of mistaken identity today, like poor old Cary Grant. No one called me by the wrong name, poured liquor down my throat, and made me wind up in jail (etc etc). But it did feel like I was walking around with something to hide. It made me happy not to be stuck inside the hospital, shuttling from one floor to the next. Just being out in the world with a sword of Damocles dangling over your head, and maybe for part of that time an IV in your arm awaiting its next use – especially on a day with nice weather, when nothing seems like it could possibly be wrong? That’s kind of hard.

So… I am really goddamn happy I got good news today. Hoping for similarly sunny skies when I see Dr P for my CT scan results on Wednesday.

The waiting

Golden Fortune Cookies, by Sherrie Thai on Flickr, licensed under Creative Commons

I’ve nearly made it through the weekend before Scan Day without losing my mind. However, there is still an entire day to get through with the kids. Young J is having a playdate, and Young A has asked to have a subway adventure. He wants to go to Grand Central and get a cookie. It’s a beautiful Sunday, though, so I’m going to upgrade that to an outing in Bryant Park, the most quintessentially New York park I can think of. Many times I have repaired there after a job interview, or to hear poetry readings, or just to sit at a table on the gravel walkway under the tall trees and pretend I am in Paris. I’ll see if Young A is amenable to being that existential. (If not… there is always the carousel.)

I’ll undoubtedly be exhausted by the end of the outing, but a happy Young A is worth all that and more.

Like a dream

Villa Fabbricotti, by Ilaria Camprincoli, licensed under Creative Commons
Villa Fabbricotti, by Ilaria Camprincoli, licensed under Creative Commons

Twenty-three years ago, I spent a few months going to school at the Centro di cultura per stranieri,  in this building, Villa Fabbricotti, in Florence, Italy. This photo looks more or less like the photo that appeared on the brochure I got before I went. I didn’t really believe I’d be going to school in a castle on top of a hill.

I showed up a couple of weeks before classes started. I had a lot of work to do. I had a room in a weird monastic hostel for a week, and then I had to hit the newsstand, buy the local print equivalent of today’s Craigslist, La Pulce  (The Flea), and start cold-calling about sublets. I was guided by the experience of my friend L, who had gotten there a few months earlier and been through it all already, but didn’t have space for a roommate.  Many calls later, I found a place, a marble-floored gem with two scenic balconies, a view of the Duomo from the shower, a laundry sink outside – which my mom, when she visited, pronounced “deluxe” because it had its own washboard attached – and one lovely Italian roommate and one completely psychotic Mexican one (naturally, she was the one to whom I paid rent). Once I moved in and bought a pillow and some candles to light on Shabbat (“You in the dark?” asked the hardware store owner), I played tourist until it was time to start school. I bought myself a school notebook:

Graph paper is for obsessives.
Graph paper is for obsessives.

School began in April. It was a bit of scam, taking classes for two and a half months and earning credit at my university for a semester’s classes (I think I earned three classes’ worth of credit). We did have a lot of lectures but they were sprinkled liberally with field trips and Easter break:


Sadly, the spring course at the Centro was all I could afford. My parents had paid the equivalent cost of my semester back home, and I filled the gaps with money I’d earned at my clerk-typist job. Good thing I got a school ID that enabled me to eat my main meal, most days, at the mensa of the University of Florence. Three bucks got you a complete meal: pasta, “meat,” a vegetable, bread, and beer or wine from stainless steel dispensers (back home, I wasn’t even legal drinking age yet). It wasn’t half bad, and occasionally the Italian students (particularly the ones from the South, who were friendlier) would deign to talk to you.

At the Centro, I discovered on day one, there weren’t a whole lot of Americans. We numbered maybe a dozen, recognizable by our clothing even before we opened our mouths. There were about 200 students there, which meant everyone else was from everywhere else. Truly. I’m pretty sure every continent was represented. This was my first experience of full-on globalization – except that we were all there to be immersed in one culture, one which wasn’t our own.

Something else I learned early on was that many of the people studying at the Centro had been born in a country different than the one they were a citizen of. Certainly that was true in my case (I was born in Brazil). By the time I went to get my ID card made, the office staff were completely exasperated by this incongruity – there were a lot of people there in my same situation, and the ID form had space for place of birth, which was supposed to be the same place as where you currently lived. Perhaps this is what predisposed us to go study in another country, to really immerse ourselves in another culture. I certainly hadn’t wanted to be in an American program, so I wound up with the polar opposite experience. I spoke Italian all day long, even with people who spoke English passably or even very well. I didn’t have long to spend in the country, so I really wrung out my experience there, as thoroughly as I wrung out my socks after soaking them and scrubbing them in the deluxe laundry sink on the balcony (on the clothesline, they’d dry into cardboard, and get sooty from passing trains).

I became fast friends with a girl from Hungary, who began teaching me words and phrases in Hungarian, which intrigued me enough to take a semester of Hungarian when I got back home. (Major failure.) She eventually got drawn in by the local Hare Krishnas, who had a lovely villa outside Florence. I wonder if she ever got back home. Her name was the Hungarian equivalent of Ann Smith, so I’ve never had any luck looking for her. There was a group of eight girls from Scotland at the school, and after fumbling through unintelligible conversations in English with them, I eventually preferred speaking to them in Italian. There were a brother and sister from Switzerland, whose parents had emigrated there from Naples. The last day of school, our previously-beloved Italian language professor suddenly revealed himself as a total racist, directing most of his bile towards Southern Italians. It was an awful way to end the course, and this brother and sister were particularly distressed by his offensive rhetoric. I think someone went to talk to the head of the school, a white-haired figurehead, and it’s possible we got the guy fired. (I hope so.)

I had a small group of friends I’d go out with in the evenings – A (American, of Argentine descent), V (French, of Italian descent), and J (Swedish, I didn’t know his background but he was a lot of fun to hang out with). We were all pretty broke, so happy hour was a major draw. There was one Mexican restaurant in Florence at that time, Caffe Caracol. For exactly one hour, from 6-7 p.m., a pitcher of margaritas cost $20 instead of $40. The drinks were extremely strong. I wouldn’t say we were there every day, but we were there more than once. So were entire platoons of soldiers. At 7 p.m., a bell would ring and the prices would go up. We’d stumble out into the early evening, drunker than anyone else on the streets. I learned how to behave sober even when I was ridiculously drunk, because I wasn’t about to make a spectacle of myself. Oh yeah – I also saw lots of Renaissance art and learned how to find the Medici crest on buildings (they were everywhere). (Obviously, I learned volumes more than that.) I was pretty depressed for at least a month when I got back home. I had evolved, developed an entirely new life and new personality in another language in Florence, and it was over so abruptly.

I think of my experience now because it was perhaps the first time in my life that I lived so intensely for such a compressed period of time. I hope one day it will be parallel to my experience with metastatic cancer, a wild ride which I still can’t believe only started last September. There is a feeling that I’ve lived about a dozen lives since then. This time around, I’m hoping for nothing but joy when I repatriate, from Cancerland to Perfect Health City. I know that’s asking a lot. Also, it’s going to take a lot longer to get my visa to go there – five years, at least, if nothing else goes wrong.

I also think of my Italian experience today, because yesterday I saw my Swedish friend J, for the first time in twenty-three years. He has been visiting New York with his son, who is now 18. I had a great time showing them around Brooklyn. And it was like no time had elapsed at all.