Nestled snuggly in between the space just past Thanksgiving and right before the days when the mayhem of Christmas begins, there was a visit with the oncologist. And it was frightfully anticlimactic. Almost boring. Some may say benign.
It’s taken me all this time, almost a week, to even share the events with you because really not all that much happened. And I find myself in a bit of a panic over it. Scared, in a new way. Afraid of what is no longer familiar.
I suppose I should share the news that I’m okay. The MRI went fine, no complications with the contrast solution. Literally strapped into a new contraption that held my legs down and not one twitch of anxiety to note. Tumor is stable still. I buried the lead. Oncology could not be happier with my results. A handshake, a nod. Off I go. See you in 8 months instead of 6!
Even the steroids aren’t causing their usual mayhem this time around. Four days in and I’ve yet to rage about missing Tupperware lids. The ease of it all is downright terrifying. Because, really, I have to ask you. How exactly does one go on with being well?
I’m never going to be all well. With desmoids you’re never truly out of the woods. But I’m good. Better than we could have ever imagined, say 4 years ago. And that’s true for me and others like me. The oral chemo that finally brought my tumor down, sorafenib, is looking to be a possibly very effective treatment for desmoids. When you have a disease that currently has no standard treatment, this is especially exciting news.
That isn’t to say we’ve found our silver bullet. Each desmoid patient is its own unique case. What one patient may respond to, others may not. And there is no five year mark for us. Nor ten, nor twenty. We live with our time bombs inside us. We hear the ticking, even when it gets faint with hope and with time.
For me, personally, I have achieved a great milestone. From the moment I began treatment with sorafenib I’ve received good news. I’ve now gone three straight years with great scan results and it’s been two years since my tumor was deemed dead and I’ve had no recurrence of growth since. Things could really not be any better and for some reason that’s somehow not okay.
It’s absurd to complain of my embarrassment of riches. Were I in any way struggling with my health while reading this, I’d surely flip me the bird. And yet here I am, whining about being well. I’m shook, I tell you. The rug that was stolen so swiftly and violently from under my feet has been tenderly returned and I’ve no idea what to do.
I’ll take it, I will. I really have no choice, do I? But as I’ve tried to embrace the leg that walked again even though it wasn’t whole. As I’ve begrudgingly welcomed the mess of curls that grew into my balding head. As I’ve tried to orient myself with the forever aches and pains of a faulty yet enduring body, I’m reminded that it’s a process. And all good things are due their time.
As I slip into a slower pace, a different stage of this tumor they call desmoid, I have flashes of how far I’ve come. I’ve memories of decisions made at a fevered pace. Of regret and remorse. I close my eyes and feel the pain of both knowing and of not. And the joy of milestones come and gone and come once again.
So, after all this, do I know how one goes on with being well after being so sick? I do not, even though I am there. It’s new and I’m not familiar. I’m home, but I’m not. But I’m here. I’ve really no choice. So, like all the good things, I’ll just have to let it have its time.