Saturday, January 28, 2012

Picture of Play Place

Here's the picture Tara referred to in the Tampa airport - finally got it off Jerod's camera...

Wednesday, January 18, 2012

Cruise pictures!

Becky here... Tara can talk about these pictures; but here are some you can look at!

Monday, January 16, 2012

Tomorrow Begins the End.

Tomorrow night I will be privileged to properly take care of those four pills sitting in my medicine of the first, one important cabinets that we  unpacked since we arrived here in our lovely place. I am ready to take them. Tuesday night, Wednesday night, Thursday night, Friday heart is racing just thinking about it. the thought that the chemo pills will be gone and will not be coming back. Done Done Done. Just a few more pills the size of my pinky finger to swallow and then they are all gone! I knew I could do it. I just can't believe that it is this week. I was taken back last time we had a scan and I realized that this would be the last treatment but now the treatment time has arrived and it is time to finish. It is time to try to be as normal as I can. I am noticing side effects from radiation/surgery1,2,3,4,5,6,/chemo/other meds/etc... just little things. I get frustrated with myself until I remember what my body has been through and what it still has to go through. I realize that there is some healing to do and I become extremely grateful for this body that I do have. My legs ache and ache all the time but hey...I have legs and they walk pretty well and even run...on most days you may even catch a little skip in my step. My arm seizes but we have meds to help and thus far I have only hit my dad and mother-in-law in the face... I have an arm and it works pretty good most of the time. My little lefty does not like the piano right now but we will see if we can work with her and see what we can do. I am the Relief Society Pianist and I guess it is good for me...I used to be able to play every hymn and even embellish on a few now I am struggling to read as fast as the music needs to be read and play the right hand... That little trooper does pretty well but my little lefty needs help. I promise I think I am telling my brain the tell it to move but it doesn't...then I am left in confusion trying to find it with my eyes and then put it where it goes and then find where I am with the right hand. This is all happening while everyone else is trying to sing... I am hoping that this is something that will help everything re connect and be one of those blessings in disguised. For now, I will just embarrass myself twice an hour every really is not that bad...I have almost all my hair back and most of the people can't play it much better than me (that's what I tell myself :))

We have been doing the glass half full thing at dinner when we go to my mommas for dinner and I hope that I can be one of those half full people.

Tomorrow tomorrow I love ya tomorrow you're only a day away!!!!!!!!!!!!!!!!   sing it Annie

Sunday, January 15, 2012

De-medicated... & sleep-overs

Well I have gained more control of my body and my typing abilities are much much better...not to say that mom is not going to have to edit this. Lately I have been asked a lot about how the cruise went and how I am feeling. How I am feeling is the standard question but the cruise is a new one I would like to touch on for a bit.

The cruise went wonderfully. All of our planes arrived on time and the boat did not news shares of other unfortunate cruise boats. I seriously did not think it was possible for a cruise boat to sink. Anyway....Josh, Jerod, Momma and I were on the first trek across the country and man was it a journey to remember. I think the think I will never forget was the layover in Tampa(n) Florida (mom no editing here this is my journal/blog...)  We had a little mix up with words and a few of us...names will not be used... struggled with where our long layover would be...We spent the night in Florida, well in the Florida airport. as soon as we got off the airplane our eyes looked all over for either the softest carpet or a few chairs without arm rests in between them. There were no chairs to be found in that terminal and let me tell you...we tried the carpet spots and they were cold and hard. I was the only one with a pillow and a blanket and I was cold! (well I am always cold but still!!!) So we decided to venture further... there had to be something else out there. Some place that was nice and warm, cozy and quiet and oh ya don't forget that we are carrying ALL of our baggage with us as carry-on's...not checked to meet us at our final destination (San Juan). This meant that we had the either have someone stay up and keep watch over all of our passports, tickets home, cruise boarding passes, wallets with id's or we just had to hope and pray that we could find a way to sleep on it or wake up if someone was stealing it. We of course chose the latter and this was after we found our cozy place to sleep for the night. We realized that where we were was the correct terminal we needed to be in. We would not have to go in through security and we had an early flight. If we left this terminal we would run the chance of missing our early flight the next morning because we had to go back through security with all our massive bags that most certainly did not look like carry-ons. So we decided to find a place to sleep. On the floor...tried that...nope. On the way with the arm rests! This was getting frustrating and it was past midnight. I was about to just go back and dump out my bag to make a bed of clothes when we saw it!!!! The children's play place! Perfect!!!! Yes ma'am that would do! Of course we were not planning on sleeping on the trains or  the planes or even the cool puppy in the corner but all of our eyes immediately targeted the cushions on the surrounding edges for the parents to watch the children.. We looked around and decided that since there were no children on the play area there would be no! Then we looked at the time...1:30am...smiles...looks like we have this place all to ourselves! :) We ripped those cushions right of those edges and made ourselves comfy cozy beds. Mom used my jacket as a blanket, and we threw all the valuables in Jared's backpack which he then wore around he stomach as he slept...or attempted to. I was all ready to go...Teeth brushed, meds taken pjs on but the light was still on...and I had this feeling that no matter how nice I asked...was going to turn it off. Then came the music and the announcements over the intercom. Lucky for us something was not right and there were fix it men on the terminal and cleaning people... It went on and on. Luckily, Josh and I had our ipods and we turned the up...rather high...covered our faces and were able to fall asleep only to be woken up by little kids playing on those planes and trains...even the puppy in the corner. The funniest thing was to sit up and see all the parents sitting on the benches without any cushions...just the hard wood! The cushions were Velcro-ed to the wood...hope there were no splinters. I was not the camera lady so I do not have the pictures but Jerod if you read this please post one!!!

The trip was amazing...that was just a funny story I just had to write it down...even if it is just there for future posterity!

I love life


Thursday, January 5, 2012

Starting the New Year right!

Mom please go change all my errors...I am doing my best butst it ius taking a really long time to type just a few words.  (now mom is editing)

All - I am bit drunk off my meds... dilantin (seizure medicine) levels usually ride between 10 and 20 and I am coasting at a sweet 38.5. Not good. Okay, can't type very much longer. I had a seizure Sunday and have kinda been sleeping since then. I think I do weird things and I know I run into walls. I am glad I have friends who help me and family to love me unconditionally.

My scan looked good (Tara had an MRI today) though, no tumor!, and this whole med thing can be fixed so don't fret I will be sober in no time.

I still don;y unerstadn whay people enjoy getting liek this? (she's referring to being drunk)

Editor - mom here.... yes, we had sort of an emergency MRI this morning because since Tara's seizure Sunday; she definitely has NOT been herself.  Saturday night we had a fun New Year's Eve together as a family - she was playing Taboo, being her little competitive self and she seemed really sharp (with her mind) so I always love seeing Tara more like herself - so that was fun.  But, Sunday, she tanked again.  We are going to have a heart to heart with Shapiro on Tuesday and hopefully change these seizure meds because they don't seem to be doing much other than making Tara lose her appetite and making her sleepy and possibly stomach sick also.  Sometimes the side effects can be worse than what the meds are trying to help!  Anyway, good news about the MRI; but we have to deal with the meds problem somehow.  This year should be the year to rebuild Tara's strength and body; and it's tough to do that when she has no appetite.

Tara said that I can safely tell you she will post next week sometime about the cruise - we are awaiting pictures off Rachel's computer - and the rest of her life.  She just can't type coherently yet.  We did go on the cruise with no complications with seizures.  I'm glad we went - although Tara did not enjoy eating, and she was sick for about 3 days - she still enjoyed being with family, seeing the nature of the islands, and playing lots of ROOK!  I'll let her tell you more of our adventures.  I, for one, am anxiously looking forward to this year to get Tara's strength back.  We met some fellow glioblastoma friends today while we were at St. Joe's, Rick & Cindy Oehme and that was definitely a highlight for us.  He is so positive and it is always so nice to meet others who travel a similar path we travel.  Cindy is wonderful also and we actually had more than 5 minutes to talk.  Rick's motto is to make the most of every day, and I told them Tara's was "Come What May and Love it" - they liked that motto pretty well!    Why do the nicest people get glioblastomas???  Please pray for a cure.

Love you all - we'll write more later.