Friday, December 21, 2012

So, i checked inpatient yesterday at 11:00.  I got to my room and was really happy to see it was a city view room.  I love my city!!  I had lots of nurses, doctors, financial coordinators and social workers visit.  My nurse came in around 2:00 to accesa my port and noticed it was a little hard to find a way to access it.  (( I actually had a bad experience when i had my port put in, which has been the only bad experience i've had at Huntsman)). 
  So..about yesterday and my port:  one thing i love about my port is that i can put numbing cream on before i leave home and then when i get accessed it's totally numb and i can't feel the needle poke at all.  But yesterday, by the time they came in to access my numbing cream had worn off.  So they accessed one side of my port and did fine.  But were unable to get the other side to access.  It ended up being 4 needle pokes which is right into your upper chest.  Ouch.  But one thing i've learned through all this cancer stuff is that physical pain can be very temporary.  And even though i would not necessarily choose it, i can endure it.
   So..about the port...i've had one before, so i kind of knew what to expect.  And this time i felt the nurses and doctors where very rushed, my conscious sedation did not work, so i was awake and felt a good part of the procedure.  I was not happy and talked to them about it.  And now, a month later, my port is not working right and they may have to replace it today.  I will be talking to them and possibly documenting it for the hospital.  I have no intention of pointing fingers or getting someone in trouble, but i do feel like it could be a good teaching opportunity for them and possibly keep from someone else going through that.  I have become a strong advocate on my behalf.  And by that i mean, i feel it is my responsibility to include myself in any decisions in my care.  Mostly i agree, and sometimes i don't and i let that be known in a way we can work together as a team.  I do feel super happy to be here at Huntsman.  I think it's an amazing place to be.  And i really need to just say how much i appreciate good doctors....but I LOVE NURSES!  :)
    When i checked inpatient i knew i would be able to see Lauren because she's over 14, but i thought it would be at least 3weeks or more before i could see Josh and Hope.  But yesterday, my awesome doctor told me i could go out in the waiting room and see them up until transplant day.  So last night they all came up and had a pizza party with me.  It made me so,so happy to be able to.spend a little time with them!!
  Another wonderful thing happened last cousin Derrick and Aunt Eileen & Uncle Steve came up and decorated my room.  It's so christmassy and cute.  I will post some pics.
   Well, so far so good.  3 chemo treatments in two days, and i'm feeling ok. I continue to have so much support.  I'm so thankful!!

So..i'm posting this from my cell phone, so please excuse any typos :)

The following pics are..
1. My bathroom door is festive
2. Christmas banner that my mom surprised me with pics Sophie Dog, Josh....
3. Holiday banner
4. My Christmas tree...gorgeous!
5. You've heard of Barry Gibb?  This is "Beary Wigg" :)
6. My whiteboard.  Can you tell which part Larry wrote?
7.more pics on my banner of my little bug- Hope, Lauren& my mom.


  1. Thinking of you and praying for you and your family each day. We are so happy things are looking promising :) I think you have to be part of your care team--you care more about the outcome than anyone else! You are so inspirational to me and I look up to you so much. Get better quick!

  2. Well Merry-belated-Christmas! Hope you and the kids had a wonderful celebrattion. So glad to hear things are on track, because we can't wait to have you back. (That turned out to be kind of a cute rhyme :)