last night I got the final word that CDPHP denied the transplant at Westchester yet again. So, Columbia it is. We were supposed to have an appointment to start the process of getting Ana listed for transplant with Columbia on Monday, but they weren’t able to schedule that for a few reasons including needing one more piece of paper for CDPHP. Ironic. So we’re looking at possibly Wednesday of next week.
I’m not as disappointed, enraged, frustrated and perplexed as you might expect. I got all of that out of my system in the last couple of weeks – thanks to this blog – thanks to everyone out there listening to me – and now I am truly ready to move on.
Now, having said that, I do want to clarify a couple of things. When a disease like cancer takes control over your life, the last thing you need is for an insurance company to come in and remove even more power. This is part of what I’ve been expressing in the last week’s worth of blog posts. The absolute powerlessness I’ve felt all along at Ana’s illness sort of culminated in the frustrating denial of the one thing we felt like we had control over – choosing Ana’s surgeon. I’m not saying this because I want anyone to help me out here (e.g., “grab your torch and pitchforks!”) The fact is, there is NO way to change CDPHP’s mind. We tried what we could and it didn’t work. Yes, we could try and continue to fight it but I really don’t want to. I’m done. I’m also very happy with the prospect of working with Dr. Kato and Edr. Emond at Columbia because, at the end of the day, they are two surgeons who know their shit.
But please know I don’t mean to drag you into the abyss with me in any deliberate, self-aggrandizing way. It’s just what’s happening and it’s just how I feel. Hard things are a part of this process and if that is something that upsets you, and I know there are those out there that are upset – because I’ve heard from you – then don’t read anymore (or at least skip the ranting, anxiety-riddled posts). I want you here with us, but I can’t promise that I will be able to edit myself. The truth is, I’m completely UNABLE to edit myself right now. But, please…stay. Bear with me. Bear with Ana. We need you.
Our story is not an easy story. Ana could be anyone’s daughter. It is not lost to me that we’ve been cast in the role of everyone’s worst nightmare. I desperately don’t want to be here. I want Ana to keep going to school. I want her hair back. I don’t want her to cry every single time she has to take a shower because she’s worried about getting an infection in her heart from the catheter. She cries every single time.
I am a writer and the only weapon in my arsenal for dealing with anything is words. I write poetry. I blog. I write letters. In my business, I write 90 character search engine ads, and proposals, and glorious marketing reports that tell the story of success or failure. I’ve started the first chapters of many a novel, only to be distracted, derailed and eventually discouraged. But I write and keep writing because sometimes I really feel like it’s the only thing I know how to do.
I’m not used to having an actual platform. From this end of the computer screen, I’m writing on my own, as I’ve always done. I guess what I’m trying to say is that I’m not used to my words reaching so many people, and that if I share too much it’s because all my life I’ve been a silent writer – putting things out there because I’m compelled to do so, but not necessarily because people are reading. And now you’re here – reading this – and, well, that’s the absolute best gift you have given me because it let’s me use the one power I feel I have – my words – in a situation where I have been left utterly powerless.