Still working on going home

     Turns out the doctors like you to have a normal temp for 24 hours before they let you go.    We shall see what happens.  My temp was 99.7 last night so...yikes.  I feel good though and my counts are up.  I kind of slept well.  I pulled my sleeping beanie down over my eyes to hide the laser light show that goes off in my room.  Once you turn off the lights you see the green light from the vitals machine that the nurses decided to leave in my room rather outside.  At the end of the bed there is an alternating red and green flash that lights up the entire wall.  Then I turned on my head phones to drown out the noise outside my room.  I love seeing or hearing people enjoy what they do but these techs have got to know we can hear everything in our rooms and laughing and carrying on from 1am to 5am is not cool.  Also, something is periodically "placed" against the wall just outside my room.  From inside my room it sounds more like someone is punching the wall.  This made me jump the first 10 times which causes me pain in certain regions.  My nurse gave me a pain pill for that.  It helped me relax but did not take away the pain.  So between the pill, headphones and beanie eye cover I got 4 good hours of sleep in 2 hour increments.  When I get home I'm going to update my mp3 player with some relaxing sleepy time music.  The most soothing option I had was Alice in Chains.

by all that is holy, save me from this monster on my plate

I can not identify some of the food items on this plate.  It is a good thing breakfast was normal and I ate a decent amount.  The description of today's lunch would imply that I am looking at meatloaf with gravy, baked potato (I recognized that one), fresh braised greens, wheat roll and gelatin orange creamsicle.

Another thing about moffit that is better...choices! They bring you a menu and you fill out what you want.  You could even write in hamburger or pizza.

The doctor here is going to get in touch with my doctor there to see if he wants them to administer my chemo since I'm here...not going to happen on my watch.  I understand that I am not the only patient here but I have very little trust in a place that loses samples quicker then I can give them, takes 5 hours to get me a dose of miralax and a B vitamin (after talking to 4 different people about it) and doesn't already know my blood type from the 4 other times they have taken it in the past 24 hours.  The nurse just left at 12:58.  He informed me at that time he will need to draw blood for typing because the doctor ordered blood to be given to me (that doc came at 11am to talk to me).  I shall post when he comes back to take blood and when the transfusion starts (which will take 8 hours).


So the chef stopped by to see how everything was going...perfect timing.  I told him I can not have fresh fruit or raw vegetables (my braised greens are cold) and that meatloaf is not my favorite.  Apparently, when the people come to take my tray they are supposed to ask me what I want for my next meal.  My breakfast tray sat here until 12 when they brought in my lunch tray so it was too late to put in an order. This leads me to believe the lunch ladies don't care what food I would prefer to eat.  Tonight, we are having turkey and I am sure it will be covered in gravy just like the meatloaf and the chicken I had for dinner yesterday.  The meat could never stand on its own so the gravy is a must but I don't like gravy.

Another doctor just left...the computers are locked up so they can't do anything with the blood until it's fixed.  They would have had to request the blood type specifically which is a different code than what they did for the labs so that is why they don't already have my type. It is now 1:30.  Still waiting on the miralax and vitamin.  They probably can't do anything with that because the system is locked up.  You just can't trust hospitals to have your best interest in mind.  Am I allowed to walk out?

 5:54 the nurse is going down to get my blood but they have to take a sample of mine to do a culture first. I forgot to watch the time but a few hours ago he came in to get the blood for typing. Still waiting on the miralax. "The guy" finally called him back and its ready. Next time I'll bring that from home.

6:49 blood is up and flowing.  3 hours each, 2 bags...guess I'm not going home tonight.  They didn't really want me to go home anyways.  Where is the money in that.  Still waiting on miralax.

ER

So spending the night at the hospital.  Just a low grade fever but it's enough to send me to the ER.  Hopefully I will get to go home tomorrow and stay on track with my chemo this week.

So when you walk into the ER you go to one booth to put your name on a list and grab a mask.  They then call you to get your story and vitals.  Then you get another call to go to registration.  After that, you get called to another tech to tell your story again and get a urine sample.  Lastly, you get called to the back where you get a bed.  There are also no signs telling you where all these different booths are.  There seemed to be no order to the madness.

I would have preferred to be at moffit.  So far, my urine sample has been lost and my blood wasn't properly handled so those things had to be redone.  I'm pretty sure they forgot about me outside the ct scan room.  And right now.  The nurse was going to be right in to hook me back up about an hour ago.  Maybe she is waiting until 10 to do my antibiotic as well.  

game night

Jeremy says I should blog before I leave for game night so it's going to be a quicky.  This whole weekend has been great.  Jeremy made me dinner yesterday and breakfast again this morning!  I really do need to help out more with the cooking but I tend to do dumb things and ruin stuff.  I'm really good at doing the dishes though.  This morning I was scrubbing the dishes as he was cooking (I hate doing a pile of dishes, so I do then as they come).  I actually felt short of breathe from scrubbing (I also over scrub because I don't believe I can get them clean enough...that is not chemo related, I've always been like that).  That is one thing I do not miss about work.  A huge sink pulling over with dishes.  I would take gutting small mammals over a sink full of dishes any day!

Looking forward to seeing a bunch of friends tonight and playing some board games! Have to go get ready.  Here is my new scarf

summertime

     Today, we went down to the pool.  I sat in the shade of course and stayed out of the pool.  There were a ton of kids! They were loud and boisterous.  I didn't mind so much though.  I just sat and read my book.  They didn't splash me so we were all good.  They reminded me of when I was a kid.  We had a pool in our backyard and all the kids and cousins would come over.  We were loud and obnoxious too.  We had so much fun!  Jumping off the garage roof into the pool, running around the outside and jumping over the wall (the pool was above ground and round), jumping off the railing, etc.  There was the grumpy old man, Cass, next door.  We were also not allowed to splash mom.  I am now the grumpy old neighbor and lady who does not want to be splashed (I'm less grumpy though...Cass was just an ass).

     I have rediscovered the bubble bath which is quickly becoming one of my favorite "events".  I say event because that is how my life works right now.  Since I no longer have the routine of work, life's pace has slowed way down.  I mark my days by things done outside of the house or some days just off the couch.  Before, a bath would have to be planned into the day.  Not the case anymore.  It takes forever to fill up the tub though but at least we don't run out of hot water before it's done.  I forego the wine at this point.  I'm not trying to cause my liver additional strain...chemo is enough.  I hear Jeremy making something in the kitchen so I may be getting some sort of treat...me thinks coconut milk based.  Water is done...peace out!

     

Happy Independence Day

No big plans today for us.  My counts are going down so we are keeping it low key.  Jeremy made breakfast...delicious.  We watched a documentary one evening in the hospital and it got him looking at some new recipes.  He made scrambled eggs with sweet potato hash browns.  Tomorrow we will add sausage to the mix and toss it in the oven.  I love breakfast.

We did a bit of running around which was good.  As long as I'm not carrying anything I don't get too tired and walking leaves me almost feeling energized.  The climb up the stairs is a different story.  Phew!

It is time to find a movie and some dinner.  Hope everyone had a nice fourth of July.

I'm home!

     This was a good one.  It seemed to go fairly quick and without incident.  They actually got me out when my mesna was done and not 3 hours after.  My discharge nurse was most informative and I learned some new things that other nurses would deem unnecessary information.  I like to know the ins and outs and appreciate having too much information.

     Mom and I enjoyed a nice lunch at Olive Garden, complete with salad.  Then we went to a matinee.  We saw The Heat.  It had some good parts but I felt like the best parts they already teased you with in the previews and then when you saw them in the film, there was nothing more to them.  The funniest parts were exactly what you saw in the previews.  After that, even though I was not hungry we stopped at Dairy Queen and I got the tiniest m&m blizzard.  Now we are home doing laundry and getting settled back in.  Mr Kitty is cleaning and Charles is hiding in the back room.  He is very vocal and affectionate when you go back to him but he rarely comes out to the common area for pets.

     Having labs done today and seeing the actual numbers to know I'm not neutropenic means I have a normal immune system and can eat restaurant salad and ice cream from a machine.  Tomorrow my numbers will probably be fine but eventually they will dip down and I will be susceptible to infection before my next appt.  It's better to be safe than sorry so I will be going back to the rules tomorrow but today I got to cheat without repercussion.  Of course I still might pay later for it just in a normal way :/.