But... I finally did. And it is so worth posting here.
Why? Because I live parts of this every day. And if I'm not living it, someone I love is. I was a bit shaken at how many of the scenarios I am intimately familiar with... or have considered, or will have to consider.
One thing you can't escape about this disease is the humanity of it all. And I feel that those on the clinical side miss that sometimes. I don't blame them, actually. It is exhausting as a patient. I can only imagine that as a professional dealing with us you must shut yourself off from crisis after crisis at some point, and just respond to the routine with precision, maybe even a script.
But the person on the other end of that script and protocol? That's me.
So I really want to sit every medical professional, care provider, and industry person down who has treated me like one more on a list for the day and remind them... it's me. Whatever you say... I am going to hear terrible news that is going to wreck me for a week, or wonderful news that is going to keep me floating for days. What you say is going to matter. A lot.
Whatever it is, I'm going to be in front of you with a straight face, jot some notes, ask some questions, and then I am going to go into the parking lot or hang up the phone, and really feel what just happened, and over the next several days, I am going to re-live it, and maybe wish I had reacted differently.
I have my major check-up coming up this week. Just a half day at the hospital for a round of tests - not much compared to what some go through. But I can tell you right now - I probably won't sleep much the night before. I never do. Anxiety? Anticipation? What will it be this time? More good news (gosh, I hope so), or bad news I wasn't expecting? What will the following days and weeks and months look like? Because everything that happens in those few hours will set the tone for what I experience next.