Wednesday, August 22, 2012

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.

12 comments:

  1. Thanks very much for the latest post and photos!!

    I am very sorry to hear how tough, tedious, and stressful your days and nights have been. It’s so, so frustrating that better and more comprehensive health care and assistance are not easily available. It is such a challenge keeping ahead and planning for the specific mix of challenges that are coming your way. It is a juggling act managing the pain meds and their resulting complications. And, the specter of choking on vomit is very scary for everyone, to say the very least!! I hope that you will be able to find additional assistance, especially in the overnight hours.

    You continue to amaze and inspire! Just taking each day as it comes and getting through!

    Wishes you excellent vibes and thoughts!

    Take good care.
    Much love and affection, Jane

    ReplyDelete
  2. Lisa Cormier RobertsAugust 22, 2012 at 6:57 PM

    We love you both very much & think of you lots :) Your strength & courage is remarkable! I'm happy to see E is able to get out & about for a bit. We all know how it helps with the mind (mood) as well. I shared your blog with my friend Julie as she's been down this road with her dad, thanks to her I figured out how to post! Love, Rich & Lisa (Rosie)

    ReplyDelete
  3. I absolutely love the pic of red in the shadows. It gives me a feeling of the dreary uncertainty you are facing. I am so glad you have each other..... being so far away, it is comforting to know Red is keeping watch too. Love you guys! Many prayers and heartfelt thoughts.........JOY

    ReplyDelete
  4. What a great update. Thanks. It's always good to hear from you - hear of the struggles and successes that you've had. Wonderful to hear (& see) that you two have gotten out and about. Here's hoping that you can find other vehicles that allow you to take short jaunts. Oh my what you two have been through making your way through this maze that is called health care! Hope you can get the 12 hour care soon and have it covered. Cyber hugs to you both. Love, Ellen PS My but Red is handsome even in the shadows.

    ReplyDelete
  5. Dear Keith,
    Thank you for the update and pictures. And thank you for taking such good care of Eileen!!! You and Eileen are doing an amazing job of navigating your difficult journey. I am so glad to hear that you got out to a Thai restaurant and hope that you can continue to do small outings.
    My love to the Local Team (including Red)!
    ann and tom

    ReplyDelete
  6. Hi guys,
    Glad to hear you're getting out and about despite the challenges.
    Love,
    Tony and Paola

    ReplyDelete
  7. I am so sorry to hear about the pain and the crap (literally)! Eileen you're such rock I just can't imagine you going through all this, and then going out for Thai food. Wow... Kids, teachers, parents and everyone else is asking about you and sending the most heart felt good thoughts to you!!! XO, L

    ReplyDelete
  8. Keith, Thanks for the update. What an amazing job you and Eileen are doing each day finding your way on this difficult journey! You certainly have had challenges in trying to get the health care services you need. Congrats on finding the private palliative care doctor. I hope that she'll be able to guide you to getting into a comfortable routine of services that meet E's needs and thus your's as well. The 12 hour night care sounds like an important piece of the care.
    Glad you and Eileen were able to get out for a little bit. Hope you'll be able to continue that.
    Rootin' for you both from NH
    Love,
    Kate and Doug

    ReplyDelete
  9. Keith! Because the van is such an expense but something that makes your lives so much easier (and Eileen enjoys it!) consider adding a "donate" button to this blog. Seriously. I will pimp that shit out like no one's business. You will get the fundage for that thing. I would donate some of my unemployment every bloody week. for real. - Kelly

    ReplyDelete
  10. +100 to the last anonymous post, folks can and want to help man!

    ReplyDelete
  11. Hello Eileen and Keith. You are both so brave, and your comments are a comfort to us. We would also like to donate to keeping the van if there is a way to do that, please let us know.

    From: Reggie Marchione (mom of former PHS students Alexa and Theo Matthews)

    ReplyDelete
  12. And agreement from an "old" family friend from Boston who is so impressed with all of your spirit and determination to live life in the best way possible. Please let us know how we can support the van effort. Ann

    ReplyDelete