Tuesday, March 12, 2013

A whole new kinda strapped in!

Well, I made it through all of my appointments yesterday and they went pretty well.  Very, VERY, organized at the cancer center. 

One of my best friends (we have been friends since kindergarten) met me there AGAIN, we have to stop meeting like that and actually go somewhere fun for once!!  But it was so nice to have her company and talk while waiting for various appointments.  She made me laugh and reminded me to be positive without the negative spin off... lol  She is totally right.  We had some good laughs.  Just what I needed, I don't really love being in "sick" places or "cancer" places.  Mom and Dad and K (we brought her so we could have some mommy/daughter time and it's been fun.  She's been so good.  I was thinking the night before, "I wish I could bring one of the kids, but who?  C is a busy little fella and I still have to wipe his bum and force him to eat and I get frustrated with him easier and him with me... K!  She can feed herself and wipe he own bum!"  Then I left the thought until we were getting ready to leave and her and I were crying on the kitchen floor together when Mom suggested we bring her!  GREAT idea!) were there too throughout various appointments; it was just nice to not be alone - and also have a full functioning brain on hand at all times!

Dr. N looked at my MRI and said there was nothing new... bloody well better not be!  It's only been a week.  He said doing this type of treatment pushes your odds up of re-occurrence (the tumors coming back is what I think I am trying to say.  When I told Ken he said, "You mean there is a  90% chance they will come back because you did this?"  No, that is not what I was trying to say) from 50% to 90%; meaning it is a very effective treatment.

He did some neurological tests with me and I passed with flying colors.  But my eyes have been bothering me.  Again, when I rest I am ok.  But when I am tired they are a horrible mess.  Once these two spots on the right side are taken care of I think my eyes will be a lot better... I hope anyways.  I know it's still going to take some time.

I found out that I am actually only strapped to the table for an hour.  That is ok.  But let me tell you the "mask" this time is a whole new kinda mask!!!  I have a, not a mouth guard, but and impression was taken of my teeth, I guess it's a bit like a bite plate??? not sure, but I have to wear that and then there is the mesh mask piece that fits the back of my head and then on the front this time there is two pieces, one that is a more solid piece of plastic that runs over my face like a serial killer mask, and then the mesh piece that goes over top of that.  Let's just say it's a snug fit, especially across the forehead and nose.  If there was a fire and they left you there you would not get out for sure!!  Of course I will take some pictures... you need EVERY detail of my life right!!  Wink, love ya, your all such good sports!

Again, they talked a lot about me being tired... I hope that is the only side effect I have this time.  They will give me nausea meds and I WILL be taking those for sure!  Today I felt really awful and had an early nap and tried my best not to barf up my spinach shake... I was successful!!

I seriously just got down to a 1/2 tab of the dex and on Thursday I have to start right back up on 12mgs, but just for two days and then I start to wean off again.  Another month of me dex complaining - SORRY!!!  And then I should be ok.  Well, Dr. N did say that the only problem with me being on them for so long (wish I knew this before but seriously don't think I could have done anything about it) is that I may have burnt my adrenals right out and I might have to be in dex for the rest of my life if I did... or else I will die.  First question, "How much?"  and "Am I going to look like this forever?"  Minimal amount, like 0.05mgs every three days or something, the normal amount that our bodies would naturally produce, and no, I wouldn't look like this because it would be a minimal dose.... well fine then.  I still would rather my body make it's own and I don't 100% believe that we can't reverse things in our bodies if we take care of them properly.  But, we'll figure that out.

Today was low key.  Like I said, I had a nap and then we went to visit my Gramma.  It is so nice to be able to see her.  She is 90.  I want to be 90 one day.  K was a typical kid, playing on an electronic device the entire time, I know, that is my fault because I have it!  But seriously, they are a life saver, especially in the vehicles!!  We are staying at my Uncle and Aunties and it's been nice to visit with them and my cousin came home from school for supper on Sunday night so we got to see him too!  It's just nice to be around family, well, anyone that I love to be honest.  :)

I am not sure what we are going to do tomorrow, just see how things go and see how I feel.  OH, I want to tell you something funny.  C, I swear has the movie "Paranorman" memorized.  In the evenings, I am usually "done" for the day and I frustrate (is that a word?  it is now), get frustrated, whatever, really easily.  So I am usually snippy with him because he is the biggest terd!  Yes you are but I love you still...  W always listens and helps out, K does whatever we ask, and C just pushes buttons and does this horrid fake cry that makes me want to beat him!  So I usually snap.  And then he says (from the movie in a really snide tone that makes me bust a gut every time thankfully!), "Geez, that was dramatic!"  Then we all start to laugh.  Just had to share because it has saved his life on numerous occasions and like I said, makes us all laugh because he is such a little smart arse!

I think that's about it for now.  I still feel at peace and I am thankful to our Heavenly Father every day for that (when I have time to actually construct some decent lines and good mental thought paths, I have a really neat talk to share with you that one of the Apostles in our church gave at a recent fireside, but I want to do it up right).  Just wanted to keep you in the loop.  Hope all is well, thanks for your love, support and continued positive comments and encouragement.  It means so much to me.

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