my medicated wife

Well, it looks like I'll pinch hit and do another guest post. Eileen is currently sleeping heavy after being given a shit-ton of meds to battle her latest bout of nausea and pain. We've had a few rough days here, and we've talked often about how we need to update the blog. I'll do my best to catch you up to date.

Some nicer news; Things have definitely been overwhelmingly nuts here, but we did manage to get into the rental van last night and toddle over to a local Thai restaurant. It was swell to get out into the world if even for just a little bit. On our way home, we stopped by my work to check my mailbox for any deliveries. Eileen appreciated the uber-accessable environs of the Pixar campus and I found it really nice to "touch base" for a couple minutes. I have to admit it was rather strange to walk into my office. If I haven't mentioned it already- I've been off of work since late-June. I was on paid medical leave for a couple months but now I'm on unpaid leave. (Maybe if we got some better care coverage, I'd go back to work part time, but it's pretty hard to imagine being away from Eileen.....we'll be playing that all by ear..). Anyway, it was nice to roll around campus a bit.

We went down to the Oakland waterfront last week for a little roll around. It was really nice to get out and look around by the marina. I have to return the rental van and I'm not sure what the next step on transportation will be. I've been reading up on City Car Share, and they apparently have one accessible rental, but I'm skeptical it'd ever be available. Also, I've been investigating if we could use our Hoyer lift to get Eileen into the truck. It's not an ideal way to go, but it might work if I find the right sling to use. The Hoyer lift is a small crane that we use to transfer Eileen. (think: engine block hoist.) She likes to dangle in the swing. The care folks all comment that she's the only one they know of who actually LIKES being in the sling.

In rougher news; as I look back and try to distill things down to what's been happening, I come up with two things: discomfort and health care. Discomfort refers to Eileen's challenges with pain management, GI issues, and nausea/vomiting. Health care refers to all the hospice hoo-haa that we've had to endure over the past few weeks.

Eileen's condition is sometimes managed remarkably well. Other times (when you least expect) things can get pretty rocky. Mornings can be challenging with her back pain, and more recently with some pretty extreme arm pain. Her left arm and hand are sadly getting weaker, and now she's having a harder time typing/texting and certainly can't hold a cup. Thankfully her right arm and hand are still hanging in there. She's been having vision changes that she describes as "dropouts". Her left eye sees any highlights as pure white. It hasn't been as big of an issue around the house, but last night it was really bothering her as we drove around town. Coupled with the eye stuff is the fact that her cheeks are so darn big from the steroids that she actually has a little issue seeing around them. She keeps saying that she wants to get a picture with her next to a Buddha statue since the likeness is, well, similar. We think we're getting close with the pain management lately, but there will likely be some more med adjustments coming soon. She's had a pretty nasty few days of constipation issues, and that discomfort has caused a lot of nasty nausea and even some vomiting. The vomiting is terrifying since she has a very weak cough at this point and she's very afraid of choking. So far so good, and we're hoping to get the underlying nausea issues under control. TMI ALERT: We've had a few more shit blizzards in the past few days, this time via the use of enemas. She needs to get emptied out and then keep things moving. We're upping the anti-constipation meds and trying to find the "book ends" of how far we have to go, then dial it back. An extra challenge is that her meds, which are notoriously constipating, are generally consistent but they sometimes change due to breakthrough pain. Moving targets. Honestly, I'll take a shit blizzard any day over having her pained, vomiting, cramping, bloated and miserable. Normally, she's been spending at least a few hours in the wheelchair everyday. We usually get out on the deck at least, if not down the block a little bit. The bumps can be a real problem for her back pain. It's nice when we go on an outing where the pathways are smoother (i.e. at Pixar). 

We're extremely fortunate to have amazing health insurance through my work, but even so, I could write a book about our health care challenges. Our hospice experience has left a lot to be desired lately. We've had some very long wait times and other weirdness. That said, we made a really good decision to get a separate, private hospice doctor for Eileen. We're very excited and already feel better about that aspect of this whole thing. The doctor comes highly recommended and she was great when we met her. I think she's the key to helping us navigate the healthcare- both hospice care, and home care that will help me. I'm positive Eileen's health will benefit from the new situation as well.

Along the way, we've had the opportunity to have overnight nurse coverage from 8pm-8am. Turns out we won't be able to keep that coverage due to insurance issues, but it's been a nice relief that I've enjoyed while it lasted. Unexpectedly, I've come to enjoy the social aspect of it. If you know me, you know that I'm not a super social guy (nor is Eileen a super social girl). But I've had some great conversations with the nurses. They all have such amazing stories and they're all super nice. We've been lucky to get nurses and hopefully we can find a way to continue this kind of coverage (or similar) as we go along. It's been a great help for my sleep since I normally sleep in the dining room next to Eileen's hospital bed (with one eye open). When the nurse is here, I feel comfortable enough to sleep in the back bedroom. Super strange having someone in the house all night. It sorta feels like I'm sleeping in a hotel for some odd reason, but I get a little better sleep when I know someone is watching over Eileen. Plus, Red gets to sleep in the big bed with me and he is SICK for it.

Ok well it's the next day here and Eileen is awake so I'll wrap this up. As always, please know that we totally appreciate and thrive on all your notes and messages and support, even though we can be slow to respond! We know you're rootin' for us and it keeps us going.