“I felt very still and empty, the way the eye of a tornado must feel, moving dully along in the middle of the surrounding hullabaloo.”
― Sylvia Plath,
― Sylvia Plath,
We're 74 days into our 100 day wait and see game. So far Brian has been doing well, surpassing the expectations of his medical team. His blood work for the most part looks good. He's not facing any major GvHD, and he's here with us.
I know I should be celebrating...but I can't.
There aren't really any words that adequately describe this experience. You'd have to experience it yourself to understand, and I would NEVER wish that on you. Ever.
As mundane as our days are, you would think I would be at peace...
There is always a little voice in my head whispering "what if" "when" "what's next" and as many times as people have told me to stop worrying, you would think that I would, and I assure you I would like nothing better than to just STOP.
I'd give anything to just be worried about "regular" stuff.
Don't get me wrong, I am so thankful that Brian is doing well, that he still is still here, and that a 29 year old stranger donated stem cells to help my husband fight AML. I'd really like to hug that guy. I guess I kind of am, every time I hug Brian because they now share DNA.
I think part of my problem is I want Brian here with us forever and for always, and with this horrible disease there aren't any guarantees. Each day is like a cruel game of Russian roulette. I know there are no promises on the number of our days, but most of us walk through life only vaguely aware of this reality. I'm keenly in tune with it, obsessed with it.
I wish I were not.
I must be getting pretty good at disguising my continual state of unrest... at least on the outside. When I was questioning the doctor the other day and told him I was panicked he said... "That's what you look like when you are panicked?" Which made me laugh... and then cry.
When I see people they often tell me (after asking "How's Brian doing?") "Well you look good."
I'm not sure if that's a compliment. I think it's supposed to be... but how am I supposed to look? Should I stop showering and brushing my teeth? Stop brushing my hair, and getting dressed?
I'm certainly not going out of my way to "look good" and if people think I "look good" and are surprised, what the hell do I usually look like? You know.. pre-cancer?
Nobody told me that before Brian got sick, and if you think about it that's kind of weird. I'm living on Halloween candy and Diet coke, I get about six hours of sleep a night on a good night, and I'm perpetually exhausted.
I'm pretty sure I do NOT look "good" I'm just trying not to look the way I feel, as I'm certain if that ever came to fruition I would send small kids screaming and adults would run away as if the zombie apocolype had just begun. Some days I just have to remind myself what Miranda Lamber would say, "It don't matter how you feel it only matters how you look."
I think I might be losing it.
I'm so thankful for those who have stuck by us or stepped up during all of this. It feels so strange to know you are surrounded by loving good people but still feel so alone. I think part of my problem is not being able to talk about my worries and fears without being told to stop worrying and being afraid. If only it were that easy... just stop it...
I know I'm not much fun to be around right now. I'm scattered (Even more than usual if that is even possible...scary I know)
I wish I could be fun.
I wish I could stop worrying.
I wish I could enjoy fleeting moments of normal without my heart trying desperately to memorize every single detail, just in case.
I wish I could fix this.
I wish I could end this on a more positive note.
I know that everything will be as it is intended. I know that we will be carried through by the Grace of God, and I know that despite all I am dealing with right now,
God is good. All the time.