First - This morning's post that made from the Squarespace iphone app will not appear on the home page for some unknown reason. Tech support is looking into it, but if you're one that comes to the home page looking for the latest post you don't know one was made this morning. Until tech support figures it out you can find it here.
Second - I apologize for the lateness of this post. I try to do them earlier but today I needed lots of therapy. I broke down today. Again.
I took a three hour nap in the spare bedroom and felt no relief from it. Billy Jo's condition hadn't changed during that time. I was back in the bedroom, exhausted, just watching her lie there, pretty much comatose.
The hospice nurse came by and medications were discussed. She is still going to get methadone every six hours. She still will get depakote (in liquid form) every twelve. The dilaudid pump is still in play. The big surprise is that the Ativan every six hours will now be 'as needed'. The Ativan is what has basically knocked her out to keep her from suffering in pain. I'm concerned about this. Very concerned. I asked if this was going to hasten or slow her dying process and was told it would do neither, and if she returned to uncontrollable pain and restlessness that they would return to a schedule.
As for the rest of the meds, we've stopped everything else. It's hard enough for her to swallow and at this point lexapro, xanax, klonopin, tamoxifen, ambien, reglan, and prevacid are useless now and just that much more to try and swallow.
Her vitals are still normal and now the diarrhea has stopped so I imagine the round-the-clock nurses will end soon as well. This could go on for weeks and every hour is probably taking a week off my life.
To sit here and watch her take a breath, and then nothing for 20+ seconds, and wish and hope and pray it was her last, to seeing her chest raise yet again is just torture.
So I had another full-on breakdown this afternoon. The hospice nurse was here during it, and our friend Tracy got here just in time for it. Brian was here soon thereafter. Three xanax got me under control. I talked it out with them and Lisa came by a bit later. Tracy also cleaned up the bedroom for us and somehow she got Billy Jo coherent for a few minutes which was great.
I'm just not as strong as I need to be, but I think I can work on that. Billy Jo's uncle RIch (I blogged about him before here) came by to see her. After he saw her for a few minutes we went downstairs and had a real lengthy heart-to-heart conversation. I will treasure it forever. Rich just lost the love of his life to lung cancer five months ago. It was as hellish as what we are going through now. To hear his thoughts, his experiences, his fears, everything... it rings true and helped immensely. Other friends and family members are a great help and support as well, don't get me wrong, but man he picked the right day to come over. He gave me something very important to him to share with Billy Jo. I will hope to share with her tomorrow, and I will share on here as well.
I've decided I need to stop obsessing on her letting go. I need to stop watching and hoping her chest stops rising. It will happen, and I pray it is soon. But if I keep obsessing about it, it will become like watching a pot of water boil - it'll take forever and she'll suffer more as a result.
I'm also taking the fucking battery out of the clock in the bathroom. Tick-tock.Tick-tock. Fuck you.
Finally, as I was typing this, my facebook notifications exploded with people changing their profile pictures to honor Billy Jo. I am beyond thankful - it made me smile and that's not easy lately.