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!


Monday, January 21, 2013

Mid January and it's cold...

Well...I have another infusion of chemo under my belt, thanks to Charmine, who came to give me a ride, even though it meant getting up at an Ungodly hour for her!   THANKS CHARMINE!!

While I was there I met with the RN supervisor and let her know I did NOT want to ever have to deal with the Chief Nincompoop RN that I had last time, Grace.  She said, "not a problem" and told me it would be noted right on the cover of my chart...I thought that meant she was going to write "No Grace" on my, she wrote "Doctor Only" on it!  That means I don't get to see any of my favorite Nurse Practitioners!   Oh well, they obviously don't know how to hold anyone accountable up there.  The supervisor wasn't surprised when I said Grace's name...obviously I'm not the first person to make that request.

Also while I was there I found out that my urine test came back positive for a UTI.  They got a prescription phoned in for me...this was a week after the test was done!  Also, this is the fourth time I have been through antibiotic treatment for a UTI since early November!  What the hell?

So, Friday night I'm sitting there and my cell phone rings.  GUESS WHO?   You guessed it....GRACE!  She asked me if I remembered who she was and I had to restrain myself from saying, "DUH!"  She was calling to tell me that I had a UTI.  I told her I knew that already and and that I have a prescription for it.  She practically shouted "WHO WROTE THAT?"   I told her who.  She said, "well I was just going through my labs and saw this."  I told her "I'm all set" and hung up on her. Hanging on up on her was kinder than I would be if I had stayed on the line, I was gearing up to blast her. 

So, she doesn't check her labs for a week.  I wonder how many people had serious things and had to wait that long for her?  Oh, and if she HAD called in a RX for me, she'd probably screw it up...she made two mistakes in the RX she called in for the "Magic Mouthwash," including the directions to "swallow and spit!"   It should be "Swish and spit"  The woman is incompetent.

Saturday I got good Dad is being admitted to Westview on Tuesday.   It's been a long haul, but it's finally going to happen.  Maybe I shouldn't say that, Wini could always balk at the last minute, come up with some excuse.  He will be sharing a room with a man who is described as gregarious and desperate for someone to talk with.  That would be my Dad!  The staff at Westview are excited about him moving in, they know him so well from his care of my Nana when she was there, then Loretta when she was there and then all the talks and slide shows he used to put on for the patients and staff about the history of Putnam and other topics. 

I feel relieved to have him there.  I know he will be well-fed, kept clean, can ambulate safely and will benefit from being around groups of people, especially people who know and love him.  His ambulation has become more and more problematic and I have been worried about him getting around with only Wini's help.

A selfish reason for wanting him there is that I won't have to see Wini when I go see him.  That has kept me away from him since last April and it has worn on my heart.  I cannot be around her as she drives me crazy.  It is a flaw in me that I can't be more understanding and patient with her, but her procrastination behavior with everything I tried to do just pushed all my buttons.  I am a person of action, you give me a job to do and I want to get it done.  She would give me a job and then thwart me at every turn.  She always had an excuse for why it couldn't be done that day.  That's why it took me so long to clean out my father's bedroom and make it safe for him to move around. 

This week I hope to have my bloodwork come back as good for me to get my third week of chemo.  My old pal, Pam Childs has the driving duty this week.  I figured that I will really be wiped out this week and might actually need someone to carry me into the house.  Pam would be that person! 

Sandy installed grab bars on the door frame from the garage to the house.  The second stair has a high rise and it was getting harder and harder for me to get over it.  Now I grab onto the bars and use it to assist me into the house.   Yes, I am that weak. 

I can't believe how weak and tired I am.  I thought I was weak and tired the last time I was on Taxel, that was nothing compared to this.  I make myself get out of bed, come downstairs around 9 am, walk around getting something for breakfast--usually a protein shake. I have to sit down a couple of times during this process.  I try to walk around the living room, dining room and kitchen a couple of laps.  I stay downstairs in the recliner until around 11:30, then drag myself back up the stairs...and I mean drag.  I come back down around 1:30-2:00, stay up until around 3-3:30 then back up again until Sandy comes home.  Then I come down for a couple of hours and drag myself back up to bed. 

The day after treatment I feel really good, probably from the steroid they give me before I get the chemo.  Last Friday I told Jean I wanted to go to Lazizah.  She took me down there and I picked up my "to go" order, we said a quick hi to Iffat and Bassem and then back home.  That tired me out so that I felt physically ill on the ride home...but I was so happy I made that trip! 

NOTE:   if you have a weak stomach, don't read this next paragraph.  This is for the nurses out there who are reading this blog...I have a question.   They removed the G tube about 10 days ago.  I had some drainage and then the hole in my side where it was started healing up.   This weekend I de-hissed slightly and started leaking fluid from my side.  It has become obvious that this fluid is fecal matter.  How does that happen?   Sandy has researched and has asked her fellow nurses about this and they are all confused.  Anyone out there have any thoughts on this?  It's not a large amount of fluid, but it sure can stink.  It perfectly matches the liquid diarrhea that is coming out the other end.  Sandy suspects that they created a stoma in there that now has to heal up and in the meantime this is what is going to happen.  We asked the doctor to tell us exactly what they did and have yet to get a clear answer. 

Oh, and I will actually fart out my side hole too!  Strangest sensation. 

Now I have to go watch the Huskies play Duke.  Let's hope the outcome is better than that stinky Patriots game yesterday.  I am so happy for sports, which divert my attention from feeling sick for a few's even better when my favorite team wins.

Thank you President Obama for including gay people in the fight for civil rights.  First President to have the guts to do so, let alone acknowledge us!  I know Bill Clinton was supportive, but he didn't push enough and came up with that odious "Don't Ask, Don't Tell" policy.