I collected another bracelet last week. I added another paper one to the pile, the kind you have to cut off your wrist after a long day in oncology. I collect them. I don’t know why, but I add them to a growing stack right after I make note with a Sharpie of what that visit was like. 2 years without a recurrence. Going well. Good scan.
They always ask you what arm you’d like your paper bracelet on. I never know what to say. When they ask that about the IV, it’s an easier choice. Put it in the arm with less scars where you’ve poked me a thousand times before.
But the bracelet, who cares? Just stick it on so I can get to the only thing that matters. Is it back again?
I’ve had one recurrence since my initial diagnosis of a desmoid tumor in 2012. I say one because it’s likely there will be another. That’s something you find out quickly when you have a desmoid tumor. There’s not an end in sight, but you always have to keep going.
Every MRI since I completed chemo has shown an increase in cell activity in my tumor. I’ve known the day was coming. And indeed it came last week. Both tumors have grown, very minimally. Learning the larger one has grown did not shock me. The smaller one, rising from the dead after sixish years, did.
The news, though, isn’t bad. In fact, for a desmoid patient, my story is quite good. I’ve gone an astounding three years without a recurrence. Nothing in my life will change. There is no need for chemo. Yet. We will continue to wait and see, as we have for these past few years. I continue my residence in purgatory.
“Do I think that you’ll be on chemo again someday? I do.”
Desmoid tumors can spontaneously regress, which is the reason for a wait and see approach. I have no pain at this time, no limitation of movement in my leg. I’m suffering no consequences of this minimal growth, so we wait and let them figure out what they decide to do.
The likelihood of spontaneous regression is as minimal as my tumors’ growth. So we wait until the day that I wish will not come, but most likely will. The day growth is moving too fast, the day I am in too much pain, the day I can’t move like I’ve been able to, that will be the day we try chemo again and hope it works as well as it did last time.
So what did I write on this paper bracelet? Hurry up and wait. I wrote that to crack a smile. I wrote that to remember it’s going to happen in its own time, it won’t come sooner if I worry more. I wrote that so I wouldn’t eat my good days up with anxiety. I wrote that because, for as long as I’ve kept residence in purgatory, I’ve never really learned how to live there.
There isn’t so much a sadness in knowing my tumors have begun to grow again, but it is sobering. There’s a heaviness in looking ahead and seeing my years dotted with more recurrences.
Always there is the when, the where, the how many? I don’t know the answers to those questions and I never will. All I do know is there are many days in those years that won’t include chemo. My only job now is to learn how to not let the bad days swallow the good ones whole.
*Featured image courtesy of Pixabay