I sit here on this gloomy day waiting for all my appointments to be over. I have been here since 8 am, it’s now quarter to 5 and I’m still here. It has been an unsatisfactory day. I was hoping for the results of my last CT, I’m here to do an MRI, the anticipation is killing me. Outwardly I am calm, cool, and collected, but I’m good at hiding my anxiety. Ask anyone close to me and they will tell you they had no idea I was worried, but I have been hoping for an NED for a while now. I’m still waiting and I’m worried.
I thought I’d be a super responder like I had been on Crizotinib. I was NED within 6 weeks, until I progressed almost 5 years later. The bar was set impossibly high. I’m on cycle 6 of Lorlatinib and I’m impatiently waiting for what may never come. Don’t get me wrong, I am responding, things are shrinking. I am happy about that, where my disappointment lays is in the fact that things are still present or at least they have been.
I got used to clean scans and the complacency they brought. I got lulled into a false sense of security. I took comfort in being unremarkable. I can tell you I am no longer complacent or secure. I am in fact very very insecure.
I need to say I don’t do well with uncertainty. I am a confessed Type-A so me and uncertainty don’t like to dance, and lately we’ve been dancing far too often and uncertainty has been stepping on my feet.
In my rational mind I tell myself, “Self things are going very well, they are moving in the right direction, be happy. Remember, you can’t control anything except the way you react. Be happy.” My rational mind is wise, my problem is my irrational mind is what’s been talking to me lately and that conversation doesn’t go as well!
My irrational mind is full of fear and brings me to all sorts of dark and worrying places. Places I don’t want to think about when I’m dealing with the unknown. It reminds me of the first time I felt this way, way back in 2011 when I wasn’t sure my cancer had come back. I had to know. Knowing meant I could gear myself up for a fight, or to deal with sadness/anger/relief, but not knowing. Not knowing was torture!
Back then I was terrified that I would have a recurrence. It was the worst possible thing that could happen, or so I thought. Then it happened. I realized it wasn’t the end of the world. It changed things, a lot of things, but my world didn’t end. Actually it allowed me to realize and accept that my life would always be different. That was a good thing. Now I feel different. The stakes are higher. I’m not affraid of recurrence, recurrence is my reality, what I’m affraid of is running out of options and running out of time. NED means so much more now that it isn’t just me.
NED means I get to garden in the spring. It means I get to keep coming home to two ecstatic dogs and a loving husband. NED mean I can keep advocating. It means I can appreciate growing older, my gray hairs and wrinkles. NED means I get exponentially more moments of small joys. That’s all I want. Until then, I will be a bundle of nerves. I will have an ache in my stomach and knots in my back. I will feel the elephant on my chest. I will try to breathe, I will try to remain calm, but until I read NED on my reports, nothing will quell my anxiety.