Okay, not exactly. Today is probably one of the weirder days I’ve ever known — and you know I’ve had some real zingers for comparison. Fortunately, I can be reasonably sure I will not need a cab ride today. I’ve had some friggin’ surreal cab rides. Hey, when a normal cab ride is one where you’re asked if you’ve seen the Bone Collector before you are asked where you’re going… let’s just say I’ve had horribly surreal cab rides. Tip: If you call the dispatcher for a cab, make sure they are sending a cab driver who doesn’t moonlight as a ventriloquist, or who stores his dummy in the trunk. He will try to show it to you.
Fine, I digress. I am trying not to think too hard on tomorrow. It’s an interesting position: courtesy of the orthopedic oncologist, I know it is lymphoma. That is a lot more comforting than you might realize, because I still have that lingering, nagging feeling I’m just going to be set adrift. I know I’m not. I know they had a tumor there that pretty much locked in the “yeah, not ideal, not friendly and very not normal” call, and the last week or so has been spent trying to figure out b-cell, t-cell, originating here, on what gene, at what point of cell development. I know they might not be able to tell me everything they’d want to know tomorrow, either because some stuff takes more time, or they need a little more information from elsewhere. Or there might things that elude them, because not otherwise specified happens in lymphomas, too, kids.
So the orthopedic oncologist did me a huge favor, really. The completely bizarre thing is I am not sure if I’m excited to just start getting this bullshit all behind me (well, yeah, I know that I am) or if my need to bury my head in just about anything but thinking about tomorrow is because I’m slightly uneasy I’m going to hear something completely out of left field in terms of craptacularosity.
I know that I’m essentially trading my current state of crap for a new state of crap (immunomodulators and biologics, if not chemo and then immunomodulators) designed to ultimately lessen the baseline level of crap. Okay. I don’t like it (who would?) but after seven plus years of nearly being housebound, and then three years of being essentially housebound, even my anti-social self welcomes the idea of a change of pace in misery if the outcome means I can go be the ant at someone’s picnic ray of sunshine I really am. It also scares the living shit out of me (what? The treatment or liberation from these four walls? Yes. And yes. I’m worrying about the former because focusing on the latter at the moment is just sabotaging myself. It’s way too early to start that.)
But I am a bit anxious that dealing with this is going to be a little more… hardcore at the beginning than I’d have thought. In the same vein, I’m really happy now that we looked at the ass cheek tumor — as nonsensical and incidental as it may have seemed — because even with Dr. J saying he supported the idea of using steroids to make life somewhat meaningful until we figured things out, I knew that even over the mid-term this wasn’t going to be enough. I’d feel better, but truthfully, we all knew it wasn’t going to do much to ward things off and might just make the circle around the drain longer. A better picture of what we are dealing with means a couple things: I can feel assured we’re managing this to the best of our ability. I also don’t have to listen to non-involved medical professionals tell me how wrong it is that this is just being prescribed without a diagnosis. Now they’ll say it’s wrong for other reasons, I know this… and I’ll have more justification to tell them to kindly piss off.
So I have this odd jumble of mostly positive emotions. I’m pretty well past feeling like a jackass for saying thank god it’s cancer, because in the last four months or so my whole understanding of what cancer is has changed. I’m not any more afraid of it than I was… I’m certainly in awe of how something that people always pinned as being so complicated, with complete eradication being the holy grail of medicine (cure it! Longer remissions!) throughout my childhood is not what we thought it was just ten years ago. It’s a lot more complex and subtle than I realized. It’s a lot more complex and subtle, say the people who research this stuff, than anyone imagined. How the hell do oncologists keep up? I mean… Really. That just takes a certain kind of nerd. That’s all I’m saying.
I am glad we’re on to something. I don’t like what I could potentially find out, but no one asked me about any of this in the first place, and I know when the shock and fear pass, I’ll pick up and get on with it. Because it’s what you do. It’s all you can do. And I knew… It was a hard thing to say honestly to my parents and Mr. Shoe… and the doctors who knew what was going down… I knew that our window of opportunity to have this end reasonably well was closing. I knew that if we didn’t start doing something fairly soon… yes, even just prednisone, this was probably going to end really badly fairly soon. I didn’t know how soon, of course… I knew how badly, but I know how erratic things go with me. Two years, five, ten, fifteen? I wouldn’t have given me more than fifteen, that’s for damn sure. And if I said this to the wrong sort of doctor (ahem, just saying) or people who aren’t knee deep here with me (which I’m so sorry, everyone, is just about everyone except Mr. Shoe and one or two others) there was that uncomfortable sort of feeling that… well, you know, not too many people saw this change live, in-color, up close and personal. And if I don’t always look sick, I sure as hell don’t look like me. It sucks to see myself in the ladies room at the hospital and wonder when the other person came in, as I didn’t hear the door… I mean, that’s happened more than I like to admit.
I also am embarrassed to admit (but will) an elderly lady told me that I wasn’t getting water out of the faucets at the Brigham because I was waving my hands under the infrared sensor way too fast for it to register. No… it’s because there’s no CLI for these lousy institutional Moen taps!
I guess mostly I harbor my irrational fear that I’m going to be turned away without a plan. I have no reason to believe this, I know it won’t happen. But that’s the familiar fear. I’m afraid of what I might find out, but most of all I feel antsy about moving forward. I want to move forward. I can not be moving forward fast enough (therefore, time is standing still today.)
I have picnics to crash, kids. Picnics to crash.