Learning To Live On The Roller Coaster

Right now I’m sitting at my kitchen table, the spot where I typically write. The sun is at my back, every now and again the air conditioner kicks on. It’s an unusually warm February morning. After too many frigid days in a row, I welcome it.

In my view, a sink full of dishes that needs to be loaded into the dishwasher, a paragraph my son wrote that needs to be corrected, a million tiny little mundane chores that make up my everyday life. And, for once, I’m happy to see that none of them have been finished.

The day prior I left the house early in the morning, a sack of food on my arm and a warm coffee in my hand, prepared for an entire day of travel. It was a day I had been long anticipating and also fearing. This was the day I would learn if my tumor was growing again.

It was a little over two months ago when I began to wonder if a recurrence was happening. Somewhere after Thanksgiving when I felt that maddening itch deep inside my leg. The pain followed, never debilitating but rather persistent and worrisome. Stairs were harder to climb, the limp came and went.

Pain is often a sign of growth and recurrence with desmoid tumors. And recurrence is something so many of us with desmoid tumors know all too well. So, when the pain started to creep in, my thoughts went dark. As I was not scheduled to come in for a scan for another few months, I emailed my oncologist and had her weigh in. My MRI was set for a few weeks later.

The space between suspecting recurrence and sitting in the chair waiting for the MRI results was a roller coaster ride within a roller coaster ride. In the five and a half years since my diagnosis my head and my heart have been whipped to and fro, up and down through surgery, recovery, recurrence, medication regimens, financial devastation. Worry, fear, hope, devastation, acceptance. Worry, fear, hope, devastation, acceptance. Around and around I go.

The tumor is still stable. There is no decrease in the cell activity within, as well as no increase. It has not grown in any measurable way. That is good for now, but not necessarily an indicator of what they may find in three months. Desmoid tumors, were they people, would be malevolent tricksters whose endgame is to make you doubt everything you know.

The pain I have been experiencing could be the result of many things. My tumor could, in fact, be growing but just not to the point where we can see it on an MRI. My tumor could be inflamed and aggravated or could be inflaming or aggravating nearby muscles and nerves. The weakened spot on my pelvis, where tumor was chipped away so many years ago, could simply be strained by my uptick in physical activity.

Or it could be all of those things all at once. Right now there isn’t a way to tell. So we wait. We wait another three months for the next scan to see if there will be measurable growth or not. I’m mulling over the offer to try a short course of steroids to see if that abates the pain by reducing possible swelling and inflammation. The side effects look god awful, but it might be worth it to get some relief.

And that’s how it is with desmoid tumors. Even when you get good news you still can’t step off the roller coaster. Unlike cancer, there is no five year mark with desmoid tumors. There is no safe span of time that will pass. For me, individually, it’s exciting to make it past a year and a half. That’s the amount of time it took my tumor to recur after surgery. So, this is a big moment for me, but I’m never really safe from another recurrence. Two years, ten years, twenty, thirty or more, the potential for recurrence remains.

So, as I sit here clacking away at the keys, I smile when I look at the dishes. It’s a happy reminder of why they weren’t done. I was too busy learning my tumor was stable. But it’s also telling of how things get pushed aside when you’re sick. Routine doctors’ visits, paperwork, cleaning, living, doing, hoping, dreaming, I’ll get to those when I’m off the roller coaster. I’ll do those things when life settles down. 

But what I learned at the visit, the one that got me out of loading the dishwasher, is that things will never fully settle down. When I stepped onto the roller coaster that day I was diagnosed back in 2012, I thought it would be temporary. I thought the ride would someday end. So I pushed things aside to get to another day, when it’s calmer, when there’s time. Calm no longer exists. There is no more settled down. I can’t get off the roller coaster. I live there now and I have to learn to call it home.

That’s what life is like when you’re sick like this. And so many of you know. If you don’t know, you know someone who knows the roller coaster. Be it physical, mental, emotional, financial, no matter the reasons for the ride, we’re all learning to deal with it just the same. We live on the roller coaster. We call it home. I’m not very good at it yet,  but I’m trying to learn how to enjoy the ride.