Friday, January 25, 2013

Revenge...served very cold....

Yesterday Pam Child picked me up early (she had to start earlier...she lives in Brooklyn) and we toodled off through the freezing temps to Providence...arriving REALLY early.   Good thing...Little Ann Marie was there and she took us in early!

After some brief concern about my bloodwork, Anne Marie left us while she went to get stuff ready for my chemo.  That's when I heard THE BIG NEWS!   Sandra (my usual chemo nurse) came in with a big shit eating grin on her face.  She stood in the middle of the room and whispered something to me...I didn't get it so she leaned in and whispered in my ear:  "June is gone, we are very happy and we owe it in large part to YOU!" 

I said, "now I just have to work on the next one."  She asked who and when I said "Grace" she said,
"but Grace is a nice person, the other one wasn't."   I believe her on both counts.

I was the HERO!   Oh, the other nurses would come by the room, look in and give me a big grin.  The tech actually said as she informed that yesterday was her last day, "I'm leaving just as its getting good around this place!'   Oh, I basked in the glory.  

I may sit down with Grace someday and explain my concerns and expectations of her.  I need her to understand what I want to do with my life going forward to whatever conclusion there is about this cancer.  I don't intend to all medical people to be intrusive, to subject me to things that are degrading, disgusting and dehumanizing.

Speaking of that I met the head nutritionist yesterday.  She came down to see me and expressed her concern about my weight...I weighed 136.  I told her how eating is a chore, it exhausts me, things don't taste good unless they are spicy or citrusy...which burns the sores in my mouth.  It's a battle to eat.  We had a long chat...she listened a lot and asked a lot of questions.   I told her that I wanted to put them all on notice that I will NEVER agree to a Gtube for feeding.   I loved her answer, "then our job is to figure out what some way else to help you.'   GOOD ANSWER!   In our conversation I learned that she views herself as an advocate for the patients first and foremost.   GREAT!   I encouraged her to keep up the fight.

We also discussed how hard it is at times for me to drinking enough fluids and I inquired about getting bags of Ringers for home infusion, PRN...especially when I am having the constant diarrhea.  I lose far more fluid than I take in.  So, she made it happen...they delivered the bags and a more very own IV pole yesterday!

Because we started early and every thing went smoothly we were out in record time:  11:11.  YAY!  I had Pam stop at Wendy's because I had a craving for chili.   I got a small chili and I ate the WHOLE DAMNED thing!   Can't believe it!   Came home and crawled into bed and couldn't sleep...dozed for awhile and fantasized about supper.

Sandy cooked up a small hamburg patty for me and added a small portion of sweet potato.  I ate the whole thing!   Then I had a small portion of the mac and chicken mushroom dish Jean and Sandy were having.   I was hungry and it tasted pretty good!

While we watched TV Sandy hooked me up to the IV and I got half a bag of fluid.  Good thing because the explosive diarrhea (sorry folks) returned after giving me a two day hiatus and I spent most of the night in the bathroom.

This morning I weighed 140!!!  Our scales are very accurate, so I guess that chili and supper worked. 
I came downstairs and made myself some french toast and a slice of turkey bacon.  I used a slice of Lazizah's italian bread for the toast and I was able to eat all but the crust.  And I ate the entire slice of bacon. 

I know that it's the steroids that are making this possible.  I wish I could get steriods everyday!  But that has it's own I try to make hay while the sun shines.   So today I will eat as much as I can and tomorrow I will lie in bed feeling wooden and unresponsive.  That's the nature of the beast.  Hopefully that will not always be the way it is.

My Dad moved in to Westview last Tuesday and is adjusting.  He still tries to self-transfer....go from bed or chair to his walker, but they catch him and they say he redirects easily.   I'm glad there are able bodied folks all around him to keep him safe when transferring and moving around.  I was so scared that he would fall while Wini was helping him and both of them end up hurt.

They also said that yesterday he was walking up and down the hall, calling for Wini.  That hurts my heart to hear, her name is the only name he seems to know.  I know that when I stayed with him last year when Wini went to Florida, he remembered who she was for about three days, after that he didn't recognize her voice on the phone, but he would call me "Wini."  I don't know if Wini has been there to visit, she was going to take a few days off to rest up and get a break.

I think she will benefit greatly from not having to be responsible for him.  She has been losing patience more and more with him and a friend of Phil's who works at Stop and Shop told Phil that last week she was yelling at Bob in the store.  That's not good for either one of them.  Yes, she needs a break.

I hope that next week, when I have my week off from chemo I will be able to get up there and see him.   I want to see his room, meet his roommate and watch the staff interact with him.  I am encouraged to hear that when he is calling for Wini, he is roaming the hall, which means he is getting up and out of his room.  I just know that he is enjoying the good meals up there....Wini isn't much of a cook, nor does she have much of an imagination when it comes to meals.  He loved it when I was there and made him omelets, bacon, etc.   He's 92, he loves to eat....let him have tasty food!  Dr. Botta agrees.   I love Dr. Botta!

So, I will get Sandy or Jean to drive me up to the hinterlands and see my Dad....for the first time since last March.  WOW!

Oh, I realized this AM that a year ago last year, we were either en route or had already arrived in Costa Rica.  How I wish I was back there!   Nice and warm, beautiful place.  

It is so cold here we have slept with the window closed for the past three nights.   I still get pretty cold at night, especially with the multiple trips to the bathroom...the mattress warmer stays at 60% all night and I wrap my bathrobe around my head, pulling it down over my eyes...I lie there and listen to "wind and rain" on my iPhone sound machine app and pretend I'm camping or I'm back in the National Guard, sleeping under my truck in Germany (as I once did for three was drier than my pup tent)...just a little breathing hole in my head wrap.   It sends me right off to Dreamland.

Okay, I've rambled on....stay warm and get ready to sunbathe next week when we have the Jan Thaw!



Jo said...
This comment has been removed by the author.
Jo said...

i love you ann millah, i really do!