Things Are NOT Going to be Okay, and That’s Okay

Things Are NOT Going to be Okay, and That’s Okay
Things Are NOT Going to be Okay, and That’s Okay

After the shock of being diagnosed with metastatic breast cancer (mBC) in 2014, I’ve felt like I have been coasting along the last eight years, with my cancer behaving relatively unremarkably. But recently, the wind was knocked from my sails, and I realized that I STILL can’t afford to be lulled into the false sense of security of No Evidence of Active Disease (NEAD).

Although I had wide-spread metastasis at diagnosis, I had a complete response to my first line of treatment and have been NEAD since December of 2014. Historically, my tumor markers have fluctuated over the years; they’ve gone up and down, but never by more than a few points. This last visit, my tumor markers went from 19 to 31.5 – and while they were still within normal limits, they had NEVER jumped like that. The upward trend was unsettling and the panic set in immediately.

The One Thing I Didn’t Need to Hear

I admit that I had become complacent when it came to living with mBC. My disease seemed to be under control, and while I still understood the realities of my diagnosis, I found it easier to live without cancer at the forefront of every thought. I thought I was doing really well, mentally and emotionally, but after I left the cancer center and received the results of my bloodwork that day, I broke down. Like, I full-on ugly cried.

Fear. Panic. Dread. Self-pity. Why me? Yes, all of that. And to make it worse, my partner looked at me and said, “It’s going to be okay”…

“WHAT?!? How DARE you say that to me!” I responded with tears streaming down my face. My words were full of fury.

“It’s going to be okay.”

It was meant to comfort me, but it felt like a stab, like my feelings were being minimized instead of heard and acknowledged. I know it was coming from a place of love, but rather than making me feel supported, it triggered something in me – bringing thoughts and emotions to the surface I thought I had long buried.

Being Okay with Not Being Okay

After a period of sobbing and shouting about how I felt, I was able to communicate my feelings in a more productive way. I said to my partner that while I may be healthy now, I know that I won’t always be, I know the end result of living with mBC. I acknowledged that my situation was not okay, that I wasn’t okay. Having cancer, having terminal cancer, fear of death and dying, leaving my loved ones, none of that is okay. And I was completely entitled to respond to those things, however I needed, in order to cope.

Although my disease has had a slow and quiet cadence, it’s still unimaginably terrifying living a life with metastatic breast cancer. Sure, the rise in my markers might be a fluke – stress, an infection, etc.

And let’s face it, I’m still “normal”, but this is a scary place to be. Being NEAD can sometimes feel like limbo, somewhere between living and waiting for that other shoe to drop.

 My Advice to Friends and to Family of Those Living with A Terminal Illness…

It can be hard to know what to say to someone living with mBC. Everyone has a different experience, but I have found that having someone there to really listen to me and be there to support me has been incredibly helpful.

What I’ve learned is that there is no right or wrong way to “do” cancer, we just have to keep going. So, if you’re reading this and you’re not okay, that’s okay! Because I am most definitely NOT okay when it comes to my own mBC diagnosis (even after 9 years), but I now realize that’s really, really okay.