We got home from the hospital on Sunday and Brian hasn’t quite bounced back yet. At first I thought it was completely emotional. He’s been very quiet and withdrawn. He’s depressed, right? Who wouldn’t be. His mom was with him on Monday while I went to my biopsy and she just said he was very quiet. He was in the basement when I got home reading and doing calculus.
Yesterday he was just moving very slowly like he’s underwater. He’s been doing more calculus problems on the whiteboard. Its like his mind is a little bit jumbled, but he is such a smart guy and while it makes no sense to me I know he is trying to put his mind back in order.
Anyway, it dawned on me that we may not be looking at an emotional setback, to me this feels like tumor progression.
Its so crazy, because as much of a nightmare as this summer has been, as realistic as we are, hope is blinding. In May when he got sick again, it took me almost two weeks to realize something was really wrong. I just didn’t want to see it. This time its obvious to me and so I do what I always do and I called the literal best APN in the world and she took care of us. He has an MRI this afternoon.
As for my update, I had my biopsy Monday. I am surprised how fast it all came together. I am super grateful for all the help I had orchestrating that. It was an ultrasound guided biopsy and it didn’t hurt. I was also awake the whole time in spite of 5mg of Versed. They asked me if I take anything for anxiety at home. I said I have, but honestly, I am wound so tight right now you couldn’t believe it. So I listened and watched the ultrasound and learned a bunch of stuff. The radiologist mentioned that the tumors could be angiomyolipomas which are benign. He said they had a couple of the defining features so I am clinging to that hope until I get official results.
And maybe this is just me with my cynical hat on after the most horrific summer of my life, but hope it tricky for me. When you let hope in, when you really let it in like you’re supposed to, you leave no room for doubt. And when there isn’t room for doubt, it can be hard to see things as they really are. Its a delicate balance to find a way to be realistically hopeful. And in this dire situation we find ourselves in, ‘realistically hopeful’ is an oxymoron. Its much easier to hope for the best when you are standing on the outside of a situation. That’s why I am relying on so many of our friends and family to pray their hearts out for us. For those of us in the thick of it, right now, and maybe for the first time, its easier to be realistic. This is not to say anyone is “giving up” ( I hate that stupid cliche too), but its too much of an emotional roller coaster to keep hoping for things that may not come to fruition.
Where once I hoped for time, successful treatments, futures with all of us together, there has been a subtle, almost imperceptible shift to hoping for things like ease, peace, comfort, and grace. And I am crying as I type this, because even though it isn’t, it feels like giving up. But my heart is so unbelievable heavy, and sad, and afraid for us. For my children mostly, and for Brian, and for myself, and our parents and siblings. I can’t even find the words.
I always come back to this favorite quote:
So please keep thinking of us. Keep praying and sending all kinds of good and pure energy. It truly sustains me in these dark days.