Familiar/Unfamiliar

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roundabout, by Martin Fisch on Flickr, licensed under Creative Commons

The pills are the same. I’m back on Decadron and Keppra and so far I’ve been using my leftover stash from earlier this year. So I know the pills are the same.

What is not the same? Their effect on me. I’m not the loquacious, outgoing Decadron Girl. I think that’s the difference in dosage – at the start of my last round I was on as much as 30 mg a day – and one day I even got 100 mg. This time around, I take 2 mg in the morning and 2 mg in the evening. What that seems to yield is tightness in my chest, a powerfully loud yelling voice when my kids don’t snap to it, and a terror of going to sleep at night, since I know I’ll be wide awake by 5:30 a.m., then totally useless all morning.

So I have to discover new ways of coping, scheduling, avoiding, maneuvering. With any luck, things will go as planned and I’ll be back off the Decadron and the Keppra by December 7. With less luck, more of these things, new meds, more surgery, and a slow slide back into medical limbo.

I have no reason to think things will get bad again. But I watched my wedding video with the kids yesterday, because they wanted to see it, and I couldn’t believe how naïve that bride was. She was expecting that the tremendous luck that brought her to that happy occasion would follow her forever. Perhaps it has, perhaps it has, but now instead of Lady Luck, robed in satin, Mr. Luck who accompanies me now is a bit down at the mouth, foul-mouthed, not exactly bitter, but close to it.

I know – I’m lucky. The disease I have can strike those younger and more vigorous than me down like lightning. I’d love to return to who I was even a week ago – before the most recent scan, when I was all about progress and exerting control and getting things “back.” Maybe it is time at last to acknowledge there is no getting things back. Things can be different, not the same. Young A asked last night for the anti-bad dream spray again, after weeks of not needing it. I asked him why. He said, “The room is shaking again.” I suggested it was just footsteps from upstairs, or his brother in the top bunk. No, he was very clear. The room shakes.

This is, I think, his way of worrying about me. He’s tuned into me like a radio and when things start going badly, he knows. He’s my canary. He’s my sensor.

He was up again at 5:30 this morning, asking me to find his blankie and claiming he had already looked in “the gap,” the space between his bed and the wall that swallows all of his necessary items when it’s dark. There it was, right in the gap, as I predicted. I couldn’t even be angry at him for waking me, because I’d been awake already. I left the blankie on his pillow while he used the bathroom, then returned to my bed to toss and turn.

Resurfacing

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San Francisco Pillow Fight 2007, by Scott Beale / Laughing Squid on Flickr, licensed under Creative Commons

I slept from midnight to almost 7 a.m. last night. It was a struggle, though. I didn’t check the clock but I’m pretty sure the last three or four hours I had to keep convincing myself it wasn’t yet time. The night before I’d kept an hour-long vigil in the bathroom with a night light on because I couldn’t sleep. Not a comfy place to sit and not something worth repeating.

My aunt V reminded my mom that I haven’t said anything about the CT scan results. Sorry!! The MRI news kind of eclipsed that. I spoke to Dr P on the phone the night before surgery, and she proclaimed my CT scans “beautiful.” So there’s that, at least.

In other news, until now I have been taking my combo therapy of dabrafenib and trametinib every other day. No longer. Now I need to toe the line and be a good cancer patient who takes her meds every day. This is an inconvenience, since it requires careful timing of when I eat and don’t – basically, a three-hour window of not eating (or drinking anything but water) twice a day. That sounds easy in theory, but it actually isn’t. You know what sounds even harder than that, though? Being dead. So, onwards to new meds regimen, and I will try to keep my complaints to a minimum, because There But For the Grace of Big Pharma Go I.

And now to complain about Decadron (steroid) and Keppra (anti-seizure med), which I have done at such length here before. I’m back on both. Hopefully short-term. But this time I’m having none of the fun I had on Decadron last time. It’s not making me gregarious. It’s making me cranky and mean. I instantly have next to no tolerance for my kids, so it’s a really good thing Mom has been here this week. Young A came in this morning to show me a Lego car he’d built, and I hijacked it and held him close and told him I’d have to be back on the medicine for a while that makes me cranky, but that he should know that I love him so much. He seemed to understand. How that will express itself remains to be seen. Maybe he’ll get even more hyper than he was before leaving for school today. Hard to say. I know they know I love them. But this medication makes it truly hard to control my rage when it so much as pokes its head out of the hole.

So I’m back in my bedroom/cave, pissed off at my situation, annoyed that in what seems like minutes since I’ve been back on steroids I have gained back four pounds already, horrified by what continues happening in the world – especially the non-picture-postcard parts of it – and trying to cope with being simultaneously sleepy and wired and aggressive and apathetic. It’s quite a cocktail. Did I mention they seem to have used extra lidocaine on my head when they were affixing the frame to it the other day? My head feels like a huge balloon on a string, tender to the touch, swollen, unsightly, addled.

All of this should contribute to my being very questionable company when J and I go out for dinner tomorrow to celebrate eleven years of married bliss. J, I will try to keep my mouth shut, and to smile. In case I screw everything up and start a fight or start crying or something, know that I love you. You are my steadfast life force and I can’t imagine dealing with any of this without your constant strength by me.

And now to face the day. I have to visit my ophthalmologist, Dr D. It’s been a while, and my eye concerns seem to be something I have always had. They were better for a while, now things are worse. And he doesn’t know about the surgery. The extremely long wait in his office means my eating and drinking moratorium should pass quickly, but I fear he will want to dilate my pupils, adding hours on to the affair. Nothing to do but roll with it. I hope I can.

Gamma Knifed! Part Deux

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Groggy, by hyku on Flickr, licensed under Creative Commons

Up like a bolt at 4:30 today when my alarm rang. Despite going to sleep at 11:30 (because I was waiting to see Mom when she arrived), I felt pretty rested. Good thing, since I took 2 mg of Decadron last night. I’m experimenting this time around with taking it earlier in the evening, around 7 pm, to see if that helps with the sleeplessness. I’m experienced now.

Waiting for the car we called, I looked out and saw things I would not have noticed if I were not up at that hour. A thin rib of golden leaves still clinging to the nearly-nude ginkgo tree out front. Our neighbor waved as he passed, walking his fluffy, adorable Samoyed, Onslow, way before sunrise (mental note: another reason not to get a dog).

This early time of day plus hospital still calls to mind more Labor & Delivery than cancer surgery. Though I’ve been up this early for surgery once before, of course – just this past June. I enjoyed my ride in the gamma knife machine that time perhaps too much, so now I’m going again. Maybe I grasped some titanium ring and no one told me that that meant another ride.

Even though I was going into this knowing the entire process, I still didn’t quite attain the degree of performative spectacle that came naturally to one of my sisters in melanoma, Kate Boone, who has cheekily bedecked her titanium frame with garlands, sparkly things, and lights. I didn’t really have much time to plan, this time around. I did, however, make the same tired joke the neurosurgeon and the nurses probably hear all the time as they are affixing frames to people’s skulls, tightly: “So… is that a Phillips head or a flat head?” (One of the nurses snorted. It was enough for me.) After that, it was no joke. It really actually hurts when you are jabbed with two needles in the forehead and two on the back of your head, and then screws get tightened and tightened beyond belief and you can feel some blood squirting out as they affix your titanium crown. Here’s me today (no blood!):

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A portrait of the patient before gamma knife

There were a couple of innovations today. The thing under my nose – I definitely didn’t remember that from last time, and neither did J. The green cloth around me – apparently to give me some privacy. Totally not effective, and who cares if anyone stares? We are in a hospital and I have a titanium frame bolted to my skull. What of it, good sir?

Things went much more quickly when I stated my intention to not have any sedation today. I did take the Ativan that melted under my tongue, but I didn’t get anything through the IV except contrast during the MRI before surgery. My refusal of sedation helped me jump the queue to first (there were three in line for gamma knife today). I almost leapt from the gurney when I heard I was first.

This reminded me of showing up to labor & delivery when Young J was about to be born. I had quietly and painlessly dilated to 8 cm and was told by my OB to tell the nurse on duty I’d been having “cramps.” I had not been having cramps. But being that far along, with fake “cramps,” meant I got in before everyone there to be induced, and within about three and a half hours, I had a baby on the outside. I don’t know if living in New York City has made me extra attuned to opportunities to jump the queue, but it can’t be discounted…

Today, we arrived at the hospital at 5:30 a.m., I registered with the lovely British-accented trans person who works registering people at 5 a.m. (I remembered them from last time). And by 9 a.m. we were on the outside of the hospital, me with a gauze-wrapped head like I’d been in a bar fight, stepping into a cab. No baby to show for it, but hopefully, we killed something bad on the inside.

Replay

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New York City - Home of the Repeating Patterns, by Kevin Dooley on Flickr, licensed under Creative Commons

Once more unto the breach, dear friends, once more…

I missed the call from Dr K this morning because I was at a class at the gym. I went to the gym this morning because I had had a good night of sleep, untroubled sleep, and because if I’d stayed home I might have fallen prey to more sleep, bad TV, and/or bad eating. I made a good choice, which when I saw I’d missed the call became a bad choice. I don’t have a direct number for Dr K. Also my phone lately plays this game where it periodically erases all of my most frequently called numbers. It stops recognizing J, or my parents. So I found the number for Dr K’s scheduler and left a message with her.

Dr K called me back when I was in the produce section of the food coop, which has spotty phone signal, and I was catching up with a friend I hadn’t seen in a while. So she wound up hearing this news before anyone else. And I wound up getting the news while staying in one spot, by the produce case, so I wouldn’t lose the call. I was plucking mushrooms from the bin and they felt very sticky. The produce sprayers cycled on and off a few times, misting me.

Dr K consulted with several people (including Dr P) and the consensus is to avoid invasive surgery, because it’s pretty far inside the brain. So I’m having gamma knife surgery again. Tomorrow!

This means I have to go back on the evil twins, Keppra and Decadron. (I don’t know if this means I can’t drive… but that’s really beside the point right now.) I know I’ll be exhausted (Keppra) and sleepless and manic (Decadron) for a while. I had the leftovers from last time all ready to go, in my closet of meds. This time I am determined not to let that send me into a downward spiral. Good luck to me.

I am a little excited to get gamma knife again. I know it sounds weird, but you should be used to that from me by now. This time I’m feeling much better overall, don’t have my period, and most importantly – I already know what gamma knife is like. I’m going to make a better playlist this time. Something more uptempo than Satie. Ska, maybe.

Inconclusive?

I wanted a ringing endorsement of the state of my brain. I don’t have it, yet.

Back in September, Dr K saw that while all of the tumors had continued to shrink, one of them had some bleeding surrounding it. He said that sometimes tumors do that as they are dying.

Today, that same spot, there was a lot more bleeding and swelling. The limitations of imaging mean that when blood is present, it obfuscates what is behind it. Dr K said that this presents two options, either a second round of gamma knife aimed at the spot, or else actual, invasive surgery on the brain to remove what is there. The risks for the latter include possibility of infection, as well as the possibility that a nearby blood vessel, which controls the movement of the foot, could be affected.

He’s going to talk to Dr P about this and call me tomorrow. In the meantime, I’m not crying – maybe that will come later after some beer. I’m mostly kind of pissed off! But, I’m sitting in Bryant Park for a few minutes, a place I love and often come to at times like this. It is the park of my uncertainty. And it has great trees.

Scan day

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Articulated crosstown bus

I’m sitting in the hospital’s living room, or as close to it as you can get. I am typing with one swiping left thumb, because my right arm has an IV that is gift-wrapped for its next use, in an hour’s time. Every scan day is the same in that nothing and everything is the same. Today I had my MRI at the hospital instead of at the outpatient facility up the avenue. Today I waited for the crosstown bus and today again it left me a whole avenue away and as I approached the hospital’s main entrance I found myself in a passive aggressive race walk with a smartphoning doctor who was still determined to enter before me. In the end I let him win.

Today everything is later, meaning I could eat breakfast, lots of it, but am now fasting at lunchtime. The kids are going to aftercare today, which they haven’t yet done this school year, and I think that this concerns them more than the fact that Mom had/has/may no longer have cancer. They like their routines.

Directly from my CT scan, I’ll see Dr K, the neurosurgeon, who doesn’t like to wait until the ink dries on MRIs – he wants to give you results right away. I appreciate instant gratification – always have. But Dr K seems like a Highly Efficient Human, and as such I find him highly intimidating, for all of his Canadian affability. But it will be good to go home knowing my brain is – hopefully – well.

I’ll have to wait until Wednesday to find out from Dr P about the rest of me

Paris

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Corrected perspective, Paris 13, by Carlos ZGZ on Flickr, licensed under Creative Commons

I feel I should write this quickly, before the good memories recede in a more permanent way. As it is, I don’t have any of my own photos to share – my first trip to Paris, a solo one, is entombed in a photo album somewhere in the apartment that I can’t divine. (My second trip, my 30th birthday present from J, was recorded digitally and enshrined in a place we thought would be accessible long-term. Nope.)

The first trip: Crêpes bought expressly to warm my hands, a toy toaster purchased at Galéries Lafayette for my then two year old nephew (who is now 20), being told “Mademoiselle est très gourmande!” by my table companion, a stranger, at Chartier, because it was lunchtime and I didn’t skip a course, the youth hostel I was too old to stay in and the ridiculous union suit I used as pj’s which made using the coed bathroom infinitely more difficult. The hot chocolate and baguettes for breakfast at the hostel. The need to lock everything up when I left for the day, and the dread on my last night when my bunkmate discovered bedbugs in her sleeping bag. My outing to Théâtre de la Ville to see a modern dance performance, and my starving belly when I came out and realized Paris was not a place for late-night dining (or at least it wasn’t then), and my subsequent discovery of Pizzeria Karaoke in the Bastille, which, by the hour I got there was mostly bad neighborhood disco, but they decided to serve me a pizza anyways, which I consumed as drunk patrons staggered out of the disco in the back, groping each other, barely registering anyone in the dining room (I was the only one). My pilgrimage to Pause Café, which I knew from the movie Chacun cherche son chat, and where I sat with a beer and a soup to write my postcards. The bistro nearby where I stopped for a proper dinner another night, eating a plate of salmon so exquisite I asked the waiter how it was prepared, not expecting he would drop everything and stand by my table for a full ten minutes giving the play-by-play, which exceeded by far my French comprehension (and I studied it for twelve years). My night at Théâtre de la Huchette, known for its long run of an absurdist play by Ionesco, The Bald Soprano, which I had read for a book report in the fourth grade, but never seen live. The evening I showed up for a modern dance class at Centre de danse du Marais, a large building with studios named for composers surrounding the courtyard, and the teacher did not find out until the end that I was a tourist, and I walked out chatting with another woman who had been in the class, who worked for the power company. The intense longing to share the experience intricately tied to a need to have the experience be uniquely my own. The savoring the experience of a world capital while I was still living in a small town, but yearning to move to another world capital. The not knowing that in the space of less than five years, I’d return to Paris with my future husband J (then my boyfriend of one year) and stay in a proper hotel with a proper view of Parisian rooftops and visit museums and again buy crêpes to warm our hands because it was February again and we’d borrowed some magical book from the library which led us to not have one bad meal the whole trip, and the Louvre, and the Métro, and the Luxembourg Gardens and the Musée Picasso and the falafel and the lychees we bought on the street near Notre Dame that cause me to think of Paris whenever I buy lychees and the bag of croissants bought on our way to the airport which fell down in the street, spilling its precious cargo, mocking us for leaving so soon.

At no point did I ascend the Eiffel Tower. I figured I would be back and I’d do it then. I don’t know, I don’t know. Antiquities in Syria are now rubble, as are the Buddhas in Bamiyan, which had lasted thousands of years. It is hard to count on the Tour Eiffel. It is hard to count on anything.

Paris, my heart sobs. I’d say more in French, but I don’t really speak it anymore. It hurts too much. I’ll let Robert Desnos speak for me:

Le dernier poème

J’ai rêvé tellement fort de toi,
J’ai tellement marché, tellement parlé,
Tellement aimé ton ombre,
Qu’il ne me reste plus rien de toi,
Il me reste d’être l’ombre parmi les ombres
D’être cent fois plus ombre que l’ombre
D’être l’ombre qui viendra et reviendra
dans ta vie ensoleillée