I'm alone this week. Charles has toddled off to NYC for fun, meeting up with Stefan, who will be showing some of his clothing designs to interested parties. This being Stefan's first visit to NYC, and Charles being an old hand at the place, there are both touristy things and insider knowledge things on the schedule. I've only insisted that Stefan be taken to my favorite coffee joint, Cafe Lalo on the Upper West Side, and the Promenade in Brooklyn Heights. Just my two cents.
The house is quiet--not that it's loud here at any point. I'm beyond playing dj mixes while I work out in the music room, and much more likely to wear earphones while listening to Pandora as I garden. Charles does nothing by overt methods, and one would be more likely to encounter him with a slasher knife and a look in his eye than to ever hear him raise his voice.
One gets used to the movements and the actions of another person though--and when they aren't there, the doctor's office, a room, the house, they lose an important piece of meaning. At infusion a couple of weeks ago, I was nearly depressed that Alicia didn't start my IV--she was either busy elsewhere or off that day, I'm not sure which. She has poked my veins more times than I care to think of and I'm used to her sly humor. I like all the nurses but we are talking routine here.
I have this nagging fear of being alone that is amplified because I can't speak. I don't believe I've ever called 911 in my life but I'm certain I'll need to do it this week, and how can I? I have elaborate plans to dial and set my phone down and use my voice interface on the Ipad, but in an emergency, will that actually work? I noticed that IU and Monroe County are both set to institute text message 911 for people like me, who can't speak (the newspaper article focused on deaf people but our problems end similarly).
I have this notion, too, that I'll be one of those people who will die alone and no one will notice, so my dog/cat/bird/turtle/mini pig--whatever I may have as a pet--will end up half eating me until someone finally notices they haven't seen the old whack job in apartment B and what smells so badly? Classic New York Apartment story, Seinfeld story line or possibility, it doesn't matter; once you have this stuff in your head it's not easy to excise.
Oddly, the truth is that I'm clearly on an upswing and more truthfully that I refuse to allow myself to enjoy the momentum. My experience with cancer thus far has been a kiss/slap sort of affair. A tiny bit of good news like a kiss is followed extremely quickly by a sudden change of fortune or interpretation like a gigantic slap. A good day is followed by a week of lassitude. Lifespan predictions seemed to be getting shorter and shorter until they were proven wrong...but now my breath held, I wonder: how wrong?
My interior monologue has been gnawing on this Shakespearean difficulty quite a bit, ramping up yesterday during my first day of Vacation Isolation '14. In a previous life, I would take any bit of optimism and inflate it outwards until most pessimism couldn't squeeze through--only the smallest doubts would be allowed. I've pursued the good with the sort of will that would make an 1871 Prussian blush for its didacticism. Yet that energy is no longer in abundance and that certainty is certainly gone, and nothing has come to take its place but a dithering Hamlet-esque response. I am, I know, truly not ready to be the Prince of Denmark.
I have, each time cancer slapped me after a glimmer of joy, felt stupider. I have gritted my teeth at being the butt of its joke, yet again, and promised myself that I'd learn to not fall for the trick again. This is a good strategy if you're fighting a comedian, a physical comic who is certain to use a buzzer in the handshake or put a whoopee cushion on your chair. Cancer is not that clever or predictable. No, cancer is actually just a switch left in the wrong position in a cell (thank you Mom and Dad!), and it is like a democratic drawbridge, going down for everyone (thank you, Lion in Winter!).
So, more the fool I for holding back. Each time I've been caught out by the bad following the good--well, that was just life. It just happened that way. I, who rarely do anything by half measures, am the inheritor of a cancer that is markedly aggressive, and once it was switched on, I doubt much could have stopped it from its path of destruction. Those are the breaks.
In the quiet, to keep myself from hyperventilating or rushing out and adopting a pet to fulfill my macabre scenarios, I tell myself just such rational things. Eventually I laugh at myself, I make sure I know where my Ipad is, where the phone is, whether they are both fully charged, I do not make sudden moves in the shower, or drop the soap and leave it underfoot.
In fact, one of the quietest things about reality is its decided lack of drama. Reality releases the mind to accept that a great deal of what we go through--cancer or not--has a certain banality to it, and not always in an unpleasant way. If no one asked me about my bowels during my weekly chemo session, I'd swear those girls didn't care (don't laugh, it's important, and they are very slick about it). I have come to depend upon my question/answer sessions with the nurses as a way to check my own honesty, and my own vision of reality, against what is desired or expected. And, they are working just fine, amazingly.
In fact, most things are working just fine. My poor mouth is a bit more twisted as my chin moves decidely southward and inward, but hello surgical mask, good bye freak show. I've now taken to sleeping with one of these masks on as an extra impediment to drooling on my pillow cases which, by the way, I totally hate to do. Things are working just fine because when a new problem like drooling on my pillow cases arises I don't cry like a titty baby about it, I just apply a patch, or a surgical mask.
I have found myself lately thinking about how much I can think of my life with cancer--for example, how far ahead do I think? What future do I put myself into? In these complicated days, no matter what your illness or how it makes you feel, you have to do plenty of planning to have, hold and maintain your insurance, for example. You have to project outward for doctor's visits on a calendar peppered with specialist events. You have to--if you're lucky--fit the lives of others into yours, around this future, and occasionally send them off to NYC for the kind of fun you just can't have anymore.
How far? As I told someone recently, I wonder if in five years they will have created a procedure to give me back my ability to eat--and if so, will I be here to have it done? I suspect I might be, if I project out from here, where my tumors shrank and not yesterday, when they were rampant. When it's quiet, I'm practicing calling on the light and asking it to help me heal instead of sitting in bed in the dark, warily. I am fighting to allow myself to interpret reality in a whole new way in Cancerville--not just optimistically because I'm a hardass who refuses to accept it, but optimistically because I'm a hardass who can accept it.
I'll be the first person to tell you that it sucks to be happy for a minute and smacked down for five, but I'll also be the first person to tell you to get the hell over it. I'm working to apply that good advice to myself, happily, as I think of Charles and Stefan wandering through the streets, eating the food and rediscovering the city I love.
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