I honestly don’t even know where to start, other than we could NOT keep my pain under control at home, so I got another round at the ER. Whee! Once admitted to the hospital (because of course I was admitted), we’ve been on a crazy roller coaster of plans changing, re-changing and generally being all over the place. At one point, we were sure the end was nigh, and then a few hours later, we got some contradicting information. It’s been nuts.
However, it seems as though we now have a semi-stable plan to get me out of the hospital and things should work out.
There are a few pieces of important information (a lot, actually).
- After trying to get my pain under control with dilaudid and a PCA, it quickly became clear that this would not be feasible. My pain was rising too high, too fast. This reminded me of Alicia, when they remarked on how they had never seen anyone tolerate such high level of opiates (made me wonder how we compared, haha).
- They decided to do an epidural with alcohol (I think. Don’t quote me on this because I remember nothing of if, which is a good thing). The epidural is not like a birth epidural. It’s permanent, I have a permanent catheter (boo), but it is super duper effective. My pain is now essentially gone, except for some pain in the morning, which we are trying to manage.
- I have decided not to do the PSL clinical trial (can’t remember if I already wrote about it, but it was my last ditch option.) It wasn’t that I was giving up on my treatment options, but the reality was that I was not going to be able to get off my steroids in time to qualify (since I had been trying since June and I truly think that they have been a big part of me feeling better). Plus the thought of trying to get me to downtown Denver with all my equipment was simply more than I wanted to think about.
- Because I am not not seeking any treatment options now, that makes me a candidate for hospice, which is HUGE. If you are in hospice, you cannot be seeking any treatment, so the study would have knocked me out of hospice. And the HUGE problem was that no one was willing to take me on with my epidural (it’s a little complicate to manage).
- One of my other options was to go home and have home health nursing help, but aside from the fact that they pretty much couldn’t do it, that put a tremendous amount of stress on my family, who has already been amazing. Not only can they not be expected to be nurses, they legally can’t do things like change the catheter or the crazy narcotics. Hell, even the nurses themselves have to have two of them so they can “witness” disposal of extras.
- So hospice was kinda the only choice available to us for what we needed. Thankfully, it looks like it will work! The plan now is for me to have an evaluation by hospice tomorrow, and then (fingers crossed) head to hospice!
- Totally random, but needs to be said: the nurses and doctors, honestly the whole freaking team, has been beyond amazing. They are there when we need them, they explain things to us and are just generally super wonderful. We could not have done any of this without the docs and the nurses here.
- Also SUPER incredible have been my family. Someone is always here with me, even when the beds suck. They are listening to every doc (since I’m on heavy drugs and really can’t remember or understand), they are catering to my every whim (I try to to be nice about it, but if you need want and you can’t reach it…) and generally being incredible. My dad has watched Emmie every night I’ve been here and has been a rock star. Friends have also been super wonderful.
Now, if we can get my pain totally under control and there are no more pain crises, there is a chance that I can go from hospice to home. We’ll see.
I want to address something here that seems to have been coming up a little bit more lately, and also seems more relevant:
I will die. This is not a cancer that there will be a “miracle” for. My body is making it clear that we are moving toward that eventuality, though no one can predict when. So when I see people “praying for a miracle” on FaceBook, I get, I totally do, but please know that a miracle will not happen. It already has. NONE of the doctors know why I got better in February, and I am completely content and happy with the extra 6 month I got. I mean, DAMN!
Honestly, I’m getting tired of all of these roller coasters of pain and hospitals. I want my pain to managed until the end, but there is no way in hell I want this to continue forever. NONE of us are mean to live forever. You know death and taxes? They were not making that shit up. I feel like I have run a good run, fought a good fight, done as much for Emmie and Peter as I could, and anything left will have to be left to those who remain.
I’m tired. I hurt. I don’t feel like I’m dying right now, but I think I’ll be ready when the time does come, and I ask for your grace and love at that time.
Big hugs and kisses.