Wednesday, January 12, 2011

1.12.11

AYNSLEY:
Morphine lollipops. When I said these words to Gary, he just gaped at me. Morphine lollipops! Truly, modern medicine is amazing.

We discovered the drugged desserts when Mom got a back spasm on her way down to radiation. I'm not sure what caused the spasm, but the morning was basically a total loss. Yesterday our fabulous nurse T pulled Ross aside and told him Mom wasn't eating or drinking enough and if she didn't start, they'd have to put her on a feeding tube. Ross promptly told Mom, who of course has no intention of being put on tubes of any kind and set her intention of the next few days to eat. This morning they ordered a great breakfast, but it took so long to be delivered that they only had 10 minutes to eat before needing to go downstairs to radiation. So there was a bit of breakfast stress before rushing out the door...maybe that contributed? In any case, she arrived at radiation not having eaten what we consider enough and in pain. And then the miraculous suckers were produced. The plus sides of medicated candy are surely numerous-I'm confident that blog readers can come up with several of their own-but the down side is that it really knocked Mom out. She was really tired/out of it for much of the day. But still damn determined to eat. As soon as she got back to her room, she ate some more breakfast (scrambled eggs, french toast, bagel and lox) and then zonked out.

She also had a visit from the physical therapist today, but was pretty tired still from the pain killers (and also cancer! When I mentioned to Gary yesterday that I was worried about her being so exhausted, her very gently reminded me that she is very, very sick. It's not that I forget that, but I do sometimes forget what a toll it's taking). So instead of walking, they did bed exercises. We're still trying to get the PT on a more regular schedule; it seems to be hit and miss but she progresses quickly when she has it daily.

Ross and Dad had a slumber party last night that sounded great. Mom is so cute-since she can't see, she has no idea what time it is. Her days are divided by treatment and procedure, not time. So at 3:45am, she woke up to use the bathroom, then started chatting with Ross about breakfast plans. Speaking from experience, I can assure you that the late night/early morning chats are the best-she's super awake and alert and no one else is there to interrupt. Magic, basically. I'm sure Ross will treasure the talks they have during these overnight stays like I treasure mine.

Mom has been a bit dehydrated, so she's now back on the fluid IV. Her stomach has also been upset. The dehydration is most likely a result of not drinking enough. The indigestion could be from any number of medications she's on, the radiation, the fact that up until today, she hasn't really been eating the past few days.

Today my dad also had some frustrations with the doctors. We had a stand-in hospitalist (no peace sign belt buckle, that dude comes back tomorrow) who did not start out the conversation well when she said "Wow, looks like she's been blind for two days. That's too bad!" Apparently it went downhill from there, and we're actually looking forward to Phish-man tomorrow. Though I reminded my dad that he absolutely can request a different doctor at any time. And as frustrating as it is for me not to be there, in this case it was probably a good thing. The f word would have made several appearances in the first sentence out of my mouth, which overall wouldn't have been good for anyone.

By the evening, Mom had perked up a bit. Friends brought by an amazing dinner that she raved about: spiced chicken with eggplant and peppers and roasted potatoes. She ate almost half a chicken breast, plus lots of potatoes. And then some cookie dipped in chocolate! And then a few bites of the katie shake that she likes! All with an unhappy tummy. So now I'm going to digress (again!) into singing the praises of my mother. Clearly, she's not eating for a variety of reasons. Because she's not hungry. Because she's uncomfortable and food is the last thing that sounds appealing. Because her stomach hurts! Because it seems like there's no time, with the constant stream of doctors, nurses, technicians, tests, visitors, my phone calls etc. And yet. Ross told her last night that in order to get well, in order to maintain more autonomy, in order to prevent another medical intervention, she has to go against the messages her body is giving her. She has to literally put mind over matter, overrule the physical signals and eat. And so she did. Simple as that. Heroic as that.

5 comments:

  1. Dear Flynne,
    Keep up the good work with eating good foods and getting plenty of liquids. You have always been so good with that! Your dinner last night sounds scrumptious. I tried making a paper crane last night but got stuck. With our "craft backgrounds" it just shouldn't be that tough. I'm going to make some with coworkers and friends....you have well-wishers you've never met and they are all pulling for you. Hope this is a good day for all of you!

    Love, Gayle

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  2. Flynne and family,
    Aynsley is so right--you are in fact "heroic", every moment of every day. The fierce love that your family and friends have for you encircles you and hopefully provides some additional strength. We continue to learn so much from you around determination, generosity of spirit, stamina, and of course love. I like hearing about your fierce determination to eat and drink. Continue eating the delicious food--it rebuilds your strength to fight! I'm also sending enormous energy around Ross having to shave off his beard!!!!

    All my love,
    Kimbo xoxo

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  3. Way to rally, Flynn!
    It sounds like I missed a great dinner last night. I'm glad YOU enjoyed it. Your courage, strength and determination are truly inspirational. May you continue to grow strong each day and fight this monster. There are lots of folks out here, near and far, who are pulling for you. Keep up the good work.
    A big and gentle hug to you,
    LOVE,
    Jodi

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  4. Aynsley: You write so beautifully and interject just enough well placed humor to lighten the load. I'm going to cook up a pot of butternut squash soup for your mom and Arlen and I will bring it on the weekend. Love to you and Gary.

    - Ted

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  5. Flynne, it is wonderful to hear that you continue to work so hard to care for yourself. It must be so difficult to make yourself eat when it is one of the last things you want to do, but here is yet another testament to your strength. I am heartbroken for you about the neurologist's prognosis about your vision, but agree with Suzanne that when it comes to autoimmune responses, we just don't fully understand. I am making imperfect cranes, as I hold thoughts and prayers of continued strength, healing, love, and what some call luck but I call grace, for you. It was so good to see you Monday night, my friend.

    Beth

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