I think, for me, the best part about being on a “watch and wait” is that everything about my life is exactly the same as it’s always been. When my journey to a diagnosis began, I was with a new Doctor every week or at a new hospital every week and it was really exhausting and stressful. When my oncologist told us we will have to come back in 3 months after a second MRI, a part of me was majorly relived.
Now that I am almost 2 months back into my normal I feel so many mixed emotions about it! Firstly, and most importantly, I feel SO lucky. I am able to go about my life as though nothing is wrong at all. I am able to work out daily, be in the comfort of my own home, and I feel strong and happy. I think, though, this is where more emotions come into it. Because everything is “business as usual” sometimes it makes the bad days a bit harder to explain.
I’m not on any medications and I have very little side effects or symptoms from my Desmoid but it is still very much so there. The things I choose not to talk about daily are the things only I can feel. How if I stretch a certain way I feel the weight of my Desmoid, if my youngest nephew hugs me and accidentally bumps it its painful, how when I lift my dog up he tends to kick my rib right in the spot my Desmoid lies. I guess this is just my new normal while I heal.
For me, it’s easy to put on a brave face and really be thankful for my good days. I HAVE SO MANY GOOD, GREAT DAYS. Bad days come around and those are the days that weren’t part of my normal, and those are the days I have to still navigate. I can have a great day and an awful night and that is OK. I can have a bad morning but a wonderful afternoon and that is OK. I once heard that “healing isn’t linear” and that to me is a perfect explanation of how I feel.
My new normal, which is still a wonderful normal, is learning how to take each day, each moment as it comes and dealing with it as best I can until I am Desmoid free.