This morning as I was laying in bed being depressed by the Roe v Wade news, I got a phone call. It was our care coordinator from Health Alliance. We have asked numerous times if she could call Ernie’s phone instead of mine to no avail. So I trotted downstairs half-naked, clutching my clothes, to rush the phone to Ernie. She told Ernie she wanted to update him. Lord, let me think, what was the update? Mmmmm….that we’re still waiting for Maximus who does Medicare appeals to make a decision. In theory, it will be made today. She said she wanted to clarify that she’d always known Ernie had bladder cancer, that when she talked to Vasireddy’s nurse she had seemed to think that she didn’t know that (I think this was the real point of the call). I just bit my tongue and let it go because it doesn’t accomplish anything to alienate people. Finally, I couldn’t help myself and said, “But wait, then why did you ask me the other day if Ernie had been actually diagnosed with bladder cancer and it wasn’t just metastases of prostate cancer to the bladder?” She said she was just double checking. I said, “Don’t you have access to his records?” She said yes, but they depend on information from the members. I said, “Wait a minute, it’s OUR responsibility to tell you Ernie’s diagnoses?” More insurance company speak. I kept trying to say something but she kept talking over me. Finally I said, “You are not listening to me. You are not letting me SPEAK.” There was dead silence for a moment and then more insurance speak. Finally I said, “Fine, it’s a moot point, I’m glad they’ll be a decision made today (theoretically of course as I believe NOTHING anymore). Then she started speaking just to Ernie and said we could decide after this decision if we wanted to continue working with her as it seemed as though there had been a breach of trust.
I just cried and cried and cried and cried when Ernie got off the phone. I am trying so fucking hard to do everything right but it just doesn’t matter a bit. It doesn’t matter how much I try to stay on top of test results and plans, how much I read, how many questions I ask, how many messages I send to various doctors and nurses at Carle or Barnes. None of it accomplishes a god damn thing. If we just sat back and nodded agreeably we would be in exactly the same place. The exact same place. Nothing I am doing makes any difference.
I am my wit’s end but it doesn’t matter. Not a god damned thing makes any difference.