GREY MATTER LIFE

We’re all waiting for something. Whether banal or earth shattering, each something we wait for means something meaningful to each of us.  

If there’s one thing I’ve learned writing this blog, it’s that while I write for me and my family, I’ve come to appreciate that what I write affects others. If I’m feeling something, more than likely another patient, friend or stranger reading has experienced the same.  

We’ve been living in a tenuous place recently. A place where doing nothing is doing something. A place where waiting for nothing is good and waiting for something to appear signals something is bad. Waiting is harder than I expected it would be.  

I’ve come to realize on our journey with my piece of shit, the hardest part is no longer the tumor itself, my diagnosis or my prognosis. The emotional challenges no longer have anything to do with coping and with accepting. That work and that fight has been fought and won. We are at peace. This is our life and frankly, it’s pretty damn beautiful.  

The hardest part now is the waiting.  

I’m waiting to fight my next battle. After the life chapters encompassing diagnosis, surgery, recovery and putting our lives back together exist endless (and deeply appreciated) chapters of waiting. An indeterminate amount of time waiting for my tumor to return in some form. No one holds a magic wand and no one can tell me when or what that eventual scan or battle plan will exactly look like. Waiting is hard. Not knowing what exactly you’re waiting for is even harder.  

As much as we LOVE, drink up and appreciate my stability, the waiting game is a challenge.  

When will the tumor change, grow or otherwise behave like the piece of shit it is? When will it rear its ugly head and what will it look like? What will my next steps be? What will the battle plan be? You’re kidding yourself if you’re reading this and expect that these are not things that we think about. You’re kidding yourself if you think this is all easily filed away and that we can live a life in balance with my diagnosis and not think about these things.  

I’ve been doing some healthy questioning lately. Wondering and needing to be reminded and reassured as to why we made the decisions we did surrounding not having radiation treatments. I am again, through this process, reminded as to how lucky I am to have the medical team that I do.  

The reasoning behind our decision is not something I will draw out here. I suppose, for now, it’s one of those things that falls within the boundary of what I’m not willing to share and live out loud. However, our decision process is not really what this is about.  

For three and a half years we’ve celebrated stability and millions of minutes appreciating everything in-between. We are grateful. We’re living our life and we’re doing so without regret. We move forward each day taking life as it comes, are exceedingly hopeful my years of stability continue and we’re learning to slowing take in our breath as we are learn how to cope with waiting.  

We live our lives between MRI’s and this compartmentalized lifestyle is our existence and how we live our lives. This lifestyle has been seamlessly woven into the tapestry of our lives and feels so normal. Fucked up to many, but normal to us.  Yet, it’s the waiting that’s become the hardest element to accept, process and live with.  

The not knowing. The waiting. We wait for good news and wait for bad news. We’ll now spend our lives waiting for news. We’ll wait to formulate the next battle plan and we’ll wait for the next card to be dealt.  

We are in a good place. We did make the right decision relative to radiation. Weaving this waiting game into the already seamless tapestry of our lives is going to take time, but ultimately serve to make the journey all the easier.  

It just may take time to accept that waiting for nothing is something and part of the plan.

*I had limited time during Harper’s morning nap… sorry for any writing errors. Gotta run!