There is this great abyss between treatment and finding your “new normal.” When treatment ends and you start to wonder what is next, you fall into this abyss, and you just sort of float around and try to latch on to pieces of your former self. As you are trying to adjust to checkups instead of infusions, I found it was sometimes possible to forget that I was bald only months before. I’d hang out with friends and laugh, and in those moments, the burden of being constantly aware of your condition was alleviated. Quick enough though, someone would complain about their monthly visit from Aunt Flo, and I would be reminded that I won’t be seeing Aunt Flo for 3 more years. When my eyeglasses fog up at the bottom because heat is radiating from my cheeks, I remember that I am a survivor. It is these small constant daily reminders that make you more aware that you are in the “after after” period of your survivorship. After diagnosis, after treatment. People give you all kinds of advice about the stages of diagnosis and treatment. Well in my “after after” – in my abyss – where is the advice for that?
So far, I’ve found that you make it up as you go along. I find myself making constant gut checks. I think about where my head is…. How am I feeling today about where I am in my survivorship? Is my internal compass pointed in the right direction? Am I being fulfilled in my life? The answers to those questions and the many others I ask myself vary from day to day, but I can say as a 26-month survivor that every time I take a reading of my state of mind, I find another piece of the puzzle that makes up my “new normal.” Yes, the fear, the worry, the isolation, the anger, and the wondering that are present deep in the abyss, creep back into my mind when I allow them to be explored. And as survivors, we should explore them, and seek direction if we need to, because I know that my “new normal” puzzle is far from complete.
I started a clinical trial in February, and despite the lactose intolerance that the pills cause, my body has adjusted rather well to the side effects. The best side effect of all is a tiny bit of peace of mind. Strange to think that being on treatment again brings comfort, but it does because it provides an element of structure again in the chaos that is the abyss. I do occasionally worry about the day 6 months from now when I have to stop taking the pills, but for today, I am going to keep gathering my puzzle pieces. I hope that in the coming months, I will have enough of the pieces of my “new normal” gathered and tucked away in my mind that I won’t be fazed one bit by letting go of my pills and floating back into the abyss.