Three Weeks Without My Tumor

And so, it is gone. From the moment I woke up in the recovery room, I knew the procedure had improved my life. And with the giddy rush of Dilaudid making the absence of my sciatic nerve pain seem especially delightful, I found myself wishing that every day could be surgery day. Okay so not exactly, but you know what I mean.

It was amazing.

I got out of surgery late in the day so I wasn’t settled in my we’re-keeping-you-overnight-for-observation hospital room until almost midnight. Even so, I was too elated (and yes, high on the most excellent medication) for sleep and spent most of the night pacing the dim, quiet halls of the Special Procedures ward in the bright-ass blue Grandma dress that earned me many a cheerful comment.

Everyone was wonderful. From family and friends who came in big to help make the day run as smooth as possible, to every single person connected to my medical care, I couldn’t have asked for a better experience. And this might seem super obvious, but that kind of confidence in your care team is super important when you’re faced with neurosurgery.

The incision did hurt, but the pain was so far below what I had been experiencing just hours before that I didn’t need anything besides acetaminophen to manage. Well, and the Cymbalta that I’ve been taking for the past few months. I credit that drug with much of the comfort I’ve been able to enjoy since the very first dose I took at the beginning of the year.

It’s taking some getting used to, this newfound reality of having nerve pain from my tumor replaced by the ache of an incision that feels less and less tender every single day. When my neurosurgeon first told me he and his team had been able to remove all of the mass they could see, I just accepted it in the same way I accept when my husband tells me he took out the garbage. Like a chore to be checked off a list; the inevitable fruition of a thing needing to be done paired with the right person to see it to completion. But in the three weeks since, as I realize that I can do previously excruciating things like put weight on my right heel or drive my daughter to school, and I remember last month’s agonized conviction that I would never be rid of my sciatic tumor, those first euphoric moments in the recovery room seem less a side-effect of the Dilaudid and more an effect of heavily guarded optimism giving way to triumph. I feel like throwing my arms wide and yelling “I can walk!” at the top of my lungs, because it really does feel like that much a miracle.

Yet the joy of this surgery’s success is tempered by the unpleasant truth of what this surgery represents. Pleasant as the ordeal was, I am never able to forget that it was merely the first of neverending operations. I didn’t just have one weird, freakish nerve tumor. I have a nerve tumor condition that will keep these things growing in my nervous system with no way to predict where or when they might become large enough to necessitate removal. I have other suspicious pain spots that we’re off to investigate and from here on out, my life will be a cycle preparing for and recovering from surgery. At some point there will be tumors that are not good candidates for removal, and I will just have to live with whatever symptoms they produce.

There is a lot to process here and it’s taking all my resolve to stay present and focused in the face of so many shadowy unknowns. While I’m not currently staring down the barrel of a you-have-these-many-weeks-left-to-live gun, I am at least in the dark corridor of you-have-these-many-weeks-left-to-live-your-current-life. I have children to raise, and goals to achieve. I have this whole life I’ve been trying to put my might behind like a horse at a mill, but my body has started to fail me. The truth is, it’s been failing me for years. Having had this first successful neurosurgery, I can’t pretend otherwise anymore.

That really sucks.

I’m trying to stay here, in the present. I know how important it is to not run away with the infinite number of possible terrible outcomes and fling myself into a whirlpool of argle baragle anxiety. But staying calm and present is always easier said than done, and I find myself falling into anxiety pools on the regular. That seems normal enough, considering the circumstances, but this kind of normal is pretty much garbage. My condition is garbage.

What isn’t garbage is the weight I can put on my whole right foot. That I can finally jump with my daughter after all these years. The speed of my recovery, thanks to my Physical Therapist. The way I’ve already been able to build my life around my condition. What isn’t garbage is that the tumor on my sciatic nerve is finally gone, and it indeed was a schwannoma which means it wasn’t cancerous or anything else more frightening than the fright of NF. What isn’t garbage is that for right now I have use of both arms and both legs, and I have confidence in my neurosurgery team to help keep it this way for years to come.


image of a countdown pedestrian signal via Wikimedia Commons

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