Saturday, September 8, 2012

no answers....more challenges

Here's what's been happening lately.  It's been kinda rough, and not much good to report:  Eileen sleeps most of the time, and isn't usually completely 'with it' when she's awake, but....I can still recognize Eileen in amidst the drug and tumor haze.  It's so wonderful to spend even a few waking moments with her here and there.  Even with all the crap acting against her, at times she's still got some of her humor and wit.  She always puckers when I come in for a little kiss.  

It can be challenging to get all the meds onboard.  Many of them are already liquid, but we've taken to crushing whatever pills can be crushed and tarting them up with ice cream.  I know my ice cream to med ratios can be off sometimes and she's a trooper....although her face does tell me to use better judgement next time.  She hasn't had much of an appetite but she had a full serving of yogurt this morning.  (little victories!).  The bowels are active, but....there really isn't much going in, so not much coming out either.  Her sorbitol dose is pretty high (60ml 2x/day) so she's getting some nutrition there at least....although it's pretty much the most horrible tasting stuff you'd ever imagine, even for someone with a sweet tooth.

She's had a few episodes in the last couple days that were terrifying for her, for me, and her mom.  Lots of fast onset pain and anxiety.  In talking with the doctor, it could be that the timing between her methadone doses is too long so we're going to try some adjustments.  I sure hope that helps.  In better news; the nausea has been under control *knock on wood*.  I don't know if the morphine was the cause as suspected (now using oxycodone instead), or the newer nausea meds are the help, but either way I'll take it.  If we can get a handle on what's causing the episodes, we'll be doing much better.  Of course, we're always reminded that the tumor involvement can be the cause of some of this too.  Just hoping some med adjustments can help her keep her more comfortable.

With the current state of affairs, a trip to the city for another palliative med dose seems out of the question.  Eileen really hasn't been out of bed in over a week.  Her doctor is in contact with the other doctor to see if maybe the dose could happen here at home.  Eileen lit up when I mentioned the possibility....I know she isn't paticularly looking forward to the trip over the bridge.  With all that being said, you never know if the methadone change might improve her energy level...she might perk up a bit.  All this stuff is very much day to day, moment to moment.  That's something we've been learning, that's for sure.  Still hanging on to whatever hope I can find to hang onto.  If it happens that we are a go for the city trip, I've got a city car share van lined up.  I did a bit of a dry run with that van earlier this week and it seems like it'll work if need be.

I'm working on being less of a control freak and Eileen's mom has been very patient with me, thankfully.  We're a pretty good team at this point, and having some alternating tag-team downtime has been extremely helpful, though I can't say that I'm ever really "off"....more like I just change the view and try to give my mind a couple different things to think about here and there.   I've gotten out for a few short bike rides up the hill and today Red and I even did a little run.  We took a break at a vista and Red did his best "logger dog" impression.  He's such a city boy....didn't know what to do with himself.


That's about all I got right now.  I sure wish we had something more positive to report...although I'm always tempering my assessment of the situation with the idea that maybe...just maybe, the palliative treatment is actually doing something and she'll start to feel a little better at some point.  Who knows.  We'll just keep on keeping on and hope that we can do a better job with the meds.  As always, we all really appreciate your good thoughts and prayers.....more than you might imagine.  It's seriously keeping me going knowing how many people are pulling for us.



15 comments:

  1. So much love, prayers, and energies being sent...

    ReplyDelete
  2. Dawn Peterson-now-RundmanSeptember 8, 2012 at 7:27 PM

    We are pulling for you, praying for you, and thinking of you. Your love shines through. It's the only thing strong enough that could possibly be fueling you through all this. You, as always, rule, Keith Cormier.

    ReplyDelete
  3. Keith, thanks for the post, and a big thank-you for taking such very good care of Eileen and for being you!! You have a very big heart!!!
    I'm so glad that you have been able to go out for bike rides and a run with Red (he is a handsome guy!). Take good care of yourself.
    Our love to all of you!
    ann & tom

    ReplyDelete
  4. Thanks for the update; I appreciate hearing the report. I am very sorry to hear that everything is so grim. Seeing someone in pain and feeling helpless is very tough, to say the least. You are amazing in your patience and good instincts; you roll with what comes, and experiment with an alternate drug mix and dose. Glad to hear that you are holding out a bit of hope. It does help to keep one going.

    Excellent news that Eileen still puckers up!!

    Take care.
    Love, Jane

    ReplyDelete
  5. When I was in CA for a couple of weeks towards the end of Aug, I saw 1st hand what an incredible guy you are, Keith - a heroic husband taking such good care of his wife in the face of awful odds and circumstances, a clear and creative thinker when new solutions must be found, and a courageous partner with Eileen on this horrible journey. You & Eileen's mom are an awesome team, indeed, and you both must be EXHAUSTED. But, I must say, the most courageous of all is Eileen. We're all with you in spirit, and will be there in a flash and "in the flesh" whenever you call upon us. love, Sheila

    ReplyDelete
  6. Keith and Eileen are very special courageous friends. My prayers continue for both of you and Eileen's mom also. You are all very special people. Love, Nancy Kangas

    ReplyDelete
  7. Keith,
    Echoing all the above comments; you, Eileen and Maureen are all doing an amazing, courageous job moment to moment. I'm sure it was terrifying to see Eileen in her bad spell of pain and anxiety. Any amount of time, must have felt endless. Hopefully, the medication dosage can prevent those bad spells from returning.
    We're with you in spirit; wish we could be there in person- just around the corner- to provide support when needed.
    Sending love and prayers,
    Kate and Doug

    ReplyDelete
  8. Thinking of you both, you are amazingly strong Keith, even in just your writing of this blog post. Sending our love to both of you (and Eileen's mom too). Wishing you hope and strength, and please text anytime. - Athena & CB

    ReplyDelete
  9. Hi Keith,
    You are the trooper as well as Eileen! What a lucky gal Eileen is to have you there at all times to give her comfort and love. It's got to be hard to maintain the stamina. Glad you and Red can get out for a breath of fresh air and see the country side - it does a city boy good. All our love, Ellen

    ReplyDelete
  10. Praying for an upswing, a break, some comfort for Eileen.
    Thank you for posting! It is so touching to hear your words.

    Keep on keeping on! You are doing the greatest job in taking care of Eileen - Even when the ice cream tastes like medication, your love shines through!

    You are in my thoughts and prayers
    Ian

    ReplyDelete
  11. LOVE...LOVE...LOVE that she is puckering up for you!!! :-) Sending you prayers and strength!! Julie (Lisa's Friend)

    ReplyDelete
  12. Keith, with all of the pain and difficulties in caring for Eileen and keeping her as comfortable as possible, you know that she would want you to be taking good care of yourself too. She would want you to take runs with Red and find ways to clear your mind, even if for only a brief time. Find the time to do that, for yourself -- and for her.

    ReplyDelete
  13. Hi Keith. I think about and pray for you and Eileen every day. I am a hospice social worker here in Michigan and can feel your heartbreak and frustration through your writing. I hope you are getting some comfort from your hospice team there. Glad to hear that you are taking some time to care for yourself. Love, Margaret Kingston Staskiewicz

    ReplyDelete
  14. Thank you, Keith, for the updates. You don't know me--I was a coworker of Eileen's once upon a time--but I do really appreciate hearing how she is doing. I think about her often. She's an incredible woman, and I've missed her!

    ReplyDelete
  15. I know Eileen may be leaving us on this world but her imprints on my heart and mind will always be close to me. I am glad she is at peace and I wish the warmness of her life on her family and friends as we appreciate the time we had yet mourn the future days without her smile, humor and strength. Thank you for the updates Keith and thoughts are with you and the entire Rohmer family.

    ReplyDelete