Side effects checklist

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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.

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