It’s something Rach and I say to each other almost every day, it’s a simple phrase, short and to the point and it lets us appreciate the day we just had regardless of its ease or difficulty. At the end of the day we’re just thankful to have had it and that goes a long way. 

I haven’t been me in a long time and I feel like I’m still struggling to accept that I’ll never be me again. I fight against changing into this new person, this person who has so many limitations, physically, mentally and most notably with time itself. I hate this person who’s defined by something most people don’t even like whispering. I don’t know this person and I don’t want to. I feel like a failure because of it. I feel like a liar because of it. Every time Riley asks me if I can teach her something when she’s older, I lie to her and tell he of course I can, and it rips my heart to shreds every time. I can pretend that I’m still who I was and sometimes it feels real but it’s always short lived and usually ends with a deafening slap from reality. 

Rach and I had a date night recently and while we were talking, she thanked me for helping her grow through all the change thats happened in her life. Rach had never been great at dealing with change but she said that over the years I’ve shown her how to take a bad or unexpected change and make it a good one. Now here I am, the literal epitome of taking something bad and finding the good in it. I try not to ask “why” too much and instead ask “what for”. What can I do with this? How can I use this to further my legacy and immortalize myself in my daughters, siblings and loved ones so that I live forever in anyone who knows me? What can I do with this situation that I wouldn’t have otherwise been able to do? There must be a way to make something good from this. We sat and enjoyed our time together, inevitably we found ourselves talking about our situation and subsequently crying about it. As I looked around the restaurant, I thought, all these people probably see us crying to each other and they must think we’re just a couple of kids breaking up over something stupid. The thought passed quickly and I focused instead on the love of my life sitting in front of me telling me about new medical advances she just read on blood cell splitting and how it might be able to help me. She doesn’t know, but she sure as hell tries her best to research and understand my disease as much as she can. I told her later that if anyones going to save me it’s going be her and I whole heartedly believe that. 

The emotional rollercoaster that we’ve been on over the last year is nothing short of spectacular. I don’t think we’re built for this, it’s no wonder that they assign you a psychiatrist when you get a diagnosis like mine. They want to make sure you don’t go off the deep end as I’m sure a lot of people do. Our brains aren’t meant to handle such constant turmoil and jumps from one end of the spectrum to the other. The unrelenting shifting from elation to depression is bound to breed insanity. I’m trying to sort everything out as it comes but it all moves so fast, I feel like I can barely keep up with the constant changes. One day I feel like I’m gonna die and the next I feel like I’ve never felt better. One day they’re showing me scans and talking about mutations and the next they’re talking about different and hopeful treatment options like targeted radiation.

I had a beautiful morning with my girls, we’ve started making a habit of having picnics in our room for breakfast and those moments that we get to spend together, eating, smiling and laughing all before 9am make the whole day better. And when we put our girls to sleep at night, it gives us something to look forward to in the morning and a reason to say “thank you for today”.