I slept most of yesterday. It was good to be able to do that, because last night I had a rock show to go to.
We got home late. I was up a little later. This morning I managed to walk the kids to school, stop at the cafe for some tea and to finish reading a book, but since then it has been sleep punctuated by more sleep. I can barely keep my eyes open to type this. Ouch. Ah, just lowered the brightness of the phone screen to the minimum. Much better.
This is what it feels like when Decadron leaves your system. It leaves you shipwrecked, bereft, completely taken apart. Every muscle sore, every thought incomplete. And it may be a couple days until it gets better. I might place a call to the nurses now, just to get a sense of how long I’ll feel this out of it, but of course they can’t tell me, and they might tell me to take some more steroids, and then I’d be back to square one. Nah, not calling.
Last night was one of the highest highs of the week, even better than finally getting the frame off my head on Tuesday. I went to hear a band called Ride. They were an integral part of my college years, and then they squabbled and broke up and I’d only gotten to see them once, in 1991, the rock show that convinced me to wear ear plugs to rock shows ever since (I didn’t fully get my hearing back for two days after that one). I truly never thought I’d see them again. Last November, I think it was, our friend Jeff, acting on a hot tip from a friend, let us know they’d be playing in June and did we want to go? DID WE WANT TO GO? Well, I sure did. J hasn’t known their music as long as I have.
I can’t remember when in November it was that these tickets were bought. I do remember wondering how I’d be doing by June, that distant calendar page that held so much promise, but also so much uncertainty. I do remember being sure I’d still be alive. But last November was a wash for me, life-wise. I spent that month tethered between the bed and the bathroom, not realizing how hard my immune system (and the half-dose of the drug I was able to get before getting sick) was working to rid my lungs of tumors completely by the following spring.
I also didn’t know I’d have brain metastases and that I’d be having noninvasive brain surgery a mere two days before this concert. But that all happened, and by the time I got to the concert venue, despite my aching feet, no one could have been happier than me to be standing there.
After we endured the opening act, Ride took the stage and opened with the most perfect opening number ever, their towering, psychedelic anthem, “Leave Them All Behind.”
I had to sob. Just a little. For what I’d been through this week, this past eight months, the past two years plus. I squeezed J’s hand – hard – and I let the tear tracks dry on my face while the music swirled around me.
This music kept me from ever being interested in drugs. It was my drug. I remember countless times putting a Ride CD in the player or a tape in my Walkman and waiting to be transported. (Probably when I should have been writing a paper, or thinking hard about my future plans.)
Wheels turning round
Into alien grounds
Pass through different times
Leave them all behind
That works, I thought. I’m perpetually looking for metaphors and it seemed like a good one. “Them” – the tumors. Rejecting them. They are behind me for good. Yes. The sound was up way loud. I felt vibrations in my shoes, all the way up through my stomach, even into my infirm brain. It felt therapeutic.
The song goes in a different direction by the end though:
I don’t care about the colors
I don’t care about the light
I don’t care about the truth
I don’t care about the truth
Obviously, not my reality. But I sang along anyway. Because the music is part of the fabric of my experience and even though it’s not metaphysical poetry or anything, it’s a part of my past self. I felt lighter and younger and much less sick last night. Thank you, Ride.
Given my propensity to endure all kinds of pain, I managed to get through the entire show standing without falling over, even though my feet were screaming in pain for the first hour or two (they sort of went numb after that). I’m seeing the podiatrist on Monday. I honestly don’t think he will have anything nearly as high-tech or amazing as gamma knife technology to offer me for my bunions and foot pain, but I’m hoping at least to figure out what is wrong.
This weekend offers us a slight break from the kids, a block party, a trip to the theater with the kids. I hope the Decadron doldrums clear in time for me to enjoy these things. My bed is very comfortable, but I know its contours too well by now.
4 thoughts on “Decadron crash!”
Steroid withdrawal is hard but, you are a warrior and crash won’t deter you from living. You have left all those drugs and tumors behind!
Thanks Bindu. I certainly don’t feel like a warrior. I feel like a cancer patient with really good doctors. I am hopeful, but I also won’t know much more about my condition now until mid-July. In the meantime I’ll focus in getting stronger and spending much more time on my bike!