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.
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.
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.
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
Maybe you didn’t realize it when I named this blog a year ago. Maybe I didn’t realize it. “I’ll Live,” after all, was meant to be a wry comment on my health situation. A dismissal of it, with a shrug and a half-smile. But it turns out it was also a prediction – and, thus far, one that seems to be holding up pretty well. I have my doctors and nurses to thank. Well, I could thank my immune system and various enzymes in my body for cooperating (for the most part) with my treatment, but the body doesn’t speak human language. It takes its thank yous in, like, kale and exercise. More of those things coming soon! Promise!
When you seek to cast a thank-you net you find it expands infinitely, it widens, and eventually encircles more and more AND MORE people, until before you know it, it catches nearly everyone you’ve ever met, and they’re all looking at each other in a bewildered way. Such has been the nature of communicating cancer via blog. People who would never talk to each other in an elevator are drawn together by what I write here – equal parts tales of woe and tales of whoaaaa. This means I have become the elevator. Or the net.
I’m trying to have some fun here. On anniversaries there is a strong impulse to be maudlin. I’m not feeling very maudlin. If anything, I’m kind of pissed off right now. Two weeks ago, I set a personal record for vigorous exercise, vigorous healthy cooking (including my holy grail, making enough to freeze for later), and I recorded a resultant weight loss. It was The Best Week. Naturally, it ended in illness. A headcold descended and I am still, ten days later, not completely out from under it. All of last week was lost to marathon honking into Kleenex, downing gallons of tea, inhaling cough-inducing eucalyptus oil steam, pressing hard on pressure points in my face, attempting to nap while mouth-breathing, defrosting the meals I’d been hoping to save for later, and chanting incantations. Okay, maybe I wasn’t very regular with the incantations. But once again, as every time I get sick, whether a Major or a minor illness, it is astonishing to note how quickly things can go downhill. How quickly I want to retreat to the cave, assume a protective posture, disengage from polite society. I’m emerging again, I’m trying to get back to 100%, but to be realistic, I’ll need to take a nap right now if I want to hit 80%.
When I think back over the past year of posts – over two hundred of them now, and still very few of them usefully tagged (at this point I won’t even try to apologize) – I think they fall into a few major categories. Tributes – to family, to artists or specific artworks, to caregivers. Updates – from the sublime to the ridiculous, with perhaps only 24 hours or so separating the two extremes. Reportage – giving the “and you are there” feel to my treatment, with no detail spared (to the chagrin of some). Rants – because what is a blog without a good rant or two? Hmmm, already up to four categories. I think I should stop there.
If you’ve been a habitual reader and commenter over the past year, I would love to hear what your favorite post was (if you can remember it) and even what the worst post was. If you’ve been reading in the background – yes, you there! – thanks for reading. If you’re just finding this blog now, as a result to a web search, because you’re feeling kind of alone and because you may be the only person in your entire country to be receiving the same drug therapy I am – well, I wish I could hug you. It can be hard to be a citizen of this fledgling country, New Cancer, and it can be hard to get citizens of Cancer to recognize our documents. We don’t have an anthem yet, or a flag, but perhaps we can agree that our national food is the almighty doughnut. And, of course, that we want all cancer, new or old, to just get fucking dead.
Since it is November, a month during which many people stave off the boredom between Halloween and Christmas by trying to write a novel, I am repeating a similar exercise I did in 2013, and writing a poem each day (I’ve never been much of a fiction writer). Some friends have joined me. So posting here may be lighter than usual this month, while I try to set some poem ideas alight. I do have a scan coming up next week, so you can count on an update then, and if you’re lucky, maybe yet another photo of that horrid bottle of berry-flavored barium sulfate. So gross, yeah, but… I’ll live.