It as a 9 and a half hour adventure that left us wanting... and not in the exciting, can't wait for more, way. Long story short there was apparently a major communication breakdown somewhere about the neurology appointment. The miscommunication being that we thought he had an appointment and the neurology office didn't. SUPER HANDY! In fact they weren't even open when David got out of the two hour MRI. We're not really even sure what that means as far as when we'll get MRI results. That kind of set us into a spiral.
He got up in the chair around 9 am, got to his appointment for chemo by 10 and waited until 10:45 to see the dr then after 3 pokes to get an IV they finally had success. They've had so much trouble putting in an IV every time that they're starting to talk about other options. Maybe a port or a picc line. The picc would be high maintenance and only lasts a week or two which wouldn't do him much good. As for the port... that requires an outpatient surgery and we're not sure if he's even able/willing to have it due to the medications and how slow he heals. It may not be worth it to stop taking those meds long enough to get a port. Lots of unknowns right now.
After chemo we had lunch and walked a bit outside but not too much so our allergies didn't act up and got to his MRI appointment a little early. It was a bit of a production getting him on the MRI table as the techs didn't really have a firm grasp on how they needed to move him although they did have a lift ready and available. 2 hours later they finished the tests and that's when we realized that we didn't actually have an appointment with dr hauck's office. Terrific.
Truth be told I pretty much fell apart for a minute. None of these things or other things that are on my mind are all that big of a deal but all of them piled up at once got overwhelming. I'm sure getting 5 hours of sleep last night (more like 2 naps) didn't help. I swear I think I cried more this evening than I have in the last three and a half months combined. It's supposed to be cathartic but really it just makes me want to sleep. Maybe it's the sleep part that's cathartic.
We have a busy day ahead tomorrow and now it also includes talking to the neurologists office about how that communication breakdown happened. They said if we scheduled the MRI for a thurs or fri then the dr could see David after the test and get results right away. Terrific! Then she said she'd have someone call us to make an appointment. I guess I assumed that meant it would all get coordinated not "then you have to call us back to make an appointment to coordinate" Whatever. Hopefully if I give them feedback the same thing won't happen to anyone else.
Ultimately that was my fault and it feels like just one more thing I didn't do right. To be fair I do think I take good care of him so I am not looking for a slew of "you do a good job" comments. I know I do a good job but I also know I'm not perfect and in this I want to be. So when little "mistakes" creep in it wears on me. Is that unreasonable? Maybe but that doesn't change the way I feel about it.
Transport is such a hassle. If we don't guess what time we'll be done with appointments exactly right we end up waiting around for an hour to be picked up. Way less than ideal. So now we're going to have to go in again to get results or wait two weeks? Not that I'm irritated or anything... Getting those results was supposed to be the payoff for the long day. What a let down.
I was venting to Tim earlier and I made an off hand comment that someone needs to call a time out and give this team a pep talk. The more I thought about it the more I wish it were that easy. It's great when people try to be encouraging and "always look on the bright side of life" and all that plucky stuff but sometimes those frustrations need an outlet. And I'd be doing myself a disservice if I didn't give myself permission to let it out sometimes. It's better to vent the steam than to wait for an explosion. Also sometimes I just have to deal with all these little things and very few people know how much stuff there really is. Even I don't always know. Even though I'm a list maker I still forget things too.
It was cute when we got home and got Dave back into bed (9.5 hours out and about today!) I laid down and had a little meltdown to just get it out and Olive abandoned her perch on the pile of previously clean laundry on the couch (don't judge me, lol!) and came to lay by my head and purr. Therapy kitty to the rescue! What a nice little critter.
Dinner and a nap helped me gain a little perspective. Not that I'm not still upset but logically I know that being upset isn't going to fix anything. These last few weeks have just set us all in a bit of a tailspin with all the little things going on with us and then Ransom passing away so there is mourning and business to take care of. Plus we aren't able to be there for our friends like we'd like to be and they aren't able to be there for us the way they'd like to be. We're all sleep deprived and we're all varying degrees of out of sorts.
So... Owen has a three day weekend, we have to finish our taxes (again..no judging lol), lots of hospice visits tomorrow plus figuring out what's up with the MRI stuff, mailing some insurance paperwork, hopefully find some time to see a few friends and family and then you know... sleep. Sleep would be kind of awesome.
No comments:
Post a Comment