Waiting for the storm...
A peaceful day at the beach ... but I'm always watching. Watching and waiting and worrying...
When Fiona first got sick, it was straight to panic stations. The relapse was another out of the blue, over the cliff fall - but into a somewhat familiar hell. Now, 4 years post transplant, we have wrestled through, over and under any number of complications. What all these complications had in common was progress was measured in distance from where we were towards the goal line of "normal" or "before". Learning to walk again, learning to eat again, taking tubes out of her body, giving and taking less medications, sleeping through the night again, having less appointments, tests, procedures and doctors.
But this is different.
From the time that we figured out what was happening with her lungs - that the GVHD had spread to her lungs - we knew "back to normal" was off the table. The damage is permanent and the disease is progressive.
Her lung function is disappearing. Slowly but surely - and right now, not slowly enough. The tests monitor how much lung function she has and the drugs preserve it. The treatments that started in June attempt to slow the progress of the disease so she can keep what's she's got for as long as possible.
But eventually we will cross a line when the drugs and the treatments will not be enough. Crossing that line is inevitable and we've known that for a long time. The 'what' of it - that a lung transplant was inevitable - is something we've known for years. What we've never known - what no one has ever been able to tell us, what they still can't tell us - is when.
And it's making me crazy.
I'm great in a crisis. Throw me in the deep end and I will figure out how to swim. Give me a problem that is bigger and more complex and requires a smarter person than me to solve, and I will figure out a way to get it sorted.
But this? I don't know how to do this.
But this is like waiting for a hurricane to hit land fall. It's the whispered promise of doom, with just enough detail to be credible and exactly the amount of ambiguity to haunt my dreams. In the past 9 months, the promised doom is getting closer, like a storm building on the horizon, but I still can't tell for sure when the storm will hit or exactly how much damage it will inflict or how long it will take us to rebuild after. What I know is that the storm is coming. And while the storm may not be getting any bigger or scarier than it was 3 years ago, it feels that way. Maybe because it's a more short term prospect or maybe because I am just fucking exhausted from being afraid.
I grind my teeth. I can't sit still. I'm somehow in the room without being present.
And the fear will persist until the storm finally hits. And when it does, that fear will subside and my good-in-a-crisis muscle memory will kick in. But how can I wish for that? How can I long for the storm - a whole new fresh hell - to hit?
Anxiety is a new beast for me and I haven't got it figured out yet. I suspect I may not for a while - but I need to build these new muscles and nothing about it is easy or familiar or known.
I don't want the storm - but I want to be rid of the fear.