I re-read some of my posts and it makes me appreciate the days I am having now.  When things are bad or I'm feeling down about what goes on with my schwammy, that is all I think about.  Then things get to feeling better, and I guess you can say I take that feeling for granted because I don't feel it creeping on.  Suddenly one day (like today), I read back to what was going on a month ago and realize, life is good!  (women eh!?)  
So here's the thing.  Numbness is down to 1-2 times a day.  That's not bad seeing that today is the FIRST day I have not had it at all.  I have a bit of tightness in my swallowing, but that is ok.  With CK, not all symptoms go away and most stay but with less intensity.  
My weight is going down with proper eating and less of my Bobcaygeon Medication (wine).  I'm feeling back to ME again.  That is a good thing.
Wow,, just checking out the roots that are depicted in the picture on the right showing off my bald spots.. lololol... of course I'm naturally blonde... lol
Anyway, life is good.  Been watching way too much PVR t.v.  I hate commercials so I tape things and watch them later.  Dumb thing is,,, while I'm taping the show I love, I watch something else WITH commercials.  In the summer I watch no T.V.  So right now it's Revenge, Smash, The Good WIfe, Survivor (just started),  American Idol, The voice, The Big Bang Theory, Modern Family.   7 hours of t.v. per week.  Most of it is watched Friday night.  Naz watches everything with me except Smash.  Too chick-ish for him.  
Oh yeah, and I had my friend cut my hair.  Hated my haircut so we got scissors and chopped off the back mullet that was left of my hair and did all sorts of crazy things with the sides of my hair.  Thank goodness for wavy hair cause it hides all the hacking we did.  
Have a fantastic Family Day Weekend!!!!!  

I am so happy.  Tomorrow morning is my last day on the Decadron.  I was doing better in the beginning.  Over this last week, my symptoms have started to come back.  The numbness in my neck, face and head is now 5-6 times per day and comes on pretty strong.  It is not painful, just annoyingly strong.
My voice is getting hoarse and rumbly again.  I now have 5 months until I see my doctors again.  Who knows what will happen with the swelling, whether it will go down or not.  
I was so totally exhausted yesterday that half way through the day my arms didn't even want to work.  Was not a painful time, just a very aggitated exhausting situation.  
I look forward to the day that I can look ahead without seeing anything to do with schwammy anythings.  
Had a snow day today so it was fun to sit back all day and hang with my best-eeee Sue :)  Found up my guitar so I'm going to cut my nails and get fretting it up once again!  

Dec 14th I had my 1 year post CK MRi and consult with the oncology dept (an assistant dr.) in Ottawa.  MRI says that the tumour is now 80% dead.  Showed mass blackening throughout the centre of the tumour.  YEAH!  One problem tho, I have swelling and edema surrounding the tumour.  They don't know why.  Can't explain.  I called to ask about it and the same doctors who didn't show up for my consult didn't call me back about this issue either.  I usually keep my posts here pretty standard and non judgemental.  BUT, kind of hard lately with the lack of care that I have been receiving.  Will say tho, Moira is amazing!!! :)  
So, I have been on Decadron for 3 weeks now to bring down the swelling and edema.  I have put on weight, my face is a swollen moon face of ugliness and I am bloated and can't sleep at night.  Other than that, I am actually doing better being on the decadron.  My voice is SO MUCH better so the swelling is going down leaving my 10th cranial nerve alone.  My numbness is not as frequent.  Yes, I was having trimignal numbness from the top of my skull down my face, down my neck to my shoulder.  Spasm tingly numbness.  Anyway, as I always say, nothing a good glass of wine doesn't fix. :)
1 1/2 weeks left on the decadron and we will see if my body stays feeling better.  You know that saying "Treat your patients as you would want your own family member to be treated... ".. keep that in mind. 

I did try to find a woman that I had been in contact with that had the same symptoms one year after CK as myself and was also put on decadron to bring down her swelling.  Found her posts, followed them, then they dropped off.  She was tired of the run around, the numbness ect... she died.  Kinda concerned am I ?  You bet.  

  So today, my nerves are totally acting up. Geezzz. Driving down to Niagara Falls and it is a 3 1/2 hour trip. I was alone in the car. Actually, go back to 3 am when I could not sleep and my throat felt it was closing up a bit when I was laying back down. It reacts in such a way that when I attempt to swallow saliva, it just doesnt work. No muscles work at all for a couple of tries. A bit... panicky feeling because there is nothing going in or out either. Anyway, back to this a.m. when I woke up and was getting ready to go to Niagara. Still had a weird feeling going on in my throat. Tightness and my head and skull doing that weird numb/tingley thing. My ear full and ringing, then muffled, on and off. Start my drive, and my throat starts closing up. Just enough to cause a bit of a laboured feeling when trying to breath. You could hear the air trying to get in. Enough to make my face, neck and chest red. This kept up for a good 3 hours. Made both my ears throb and muffle. Even thought of walking into a medical walk in clinic but really???? What would I say and how could they help me anyway. Just something I have to get used to.
I know many things, I have a wonderful family. My family is healthy. I am healthy otherwise :) God gave us the ingenious mind to develop wine out of grapes!!! For all these things, I am happy and grateful!!!! xo

Wowsers, can't believe how time flies!  It has been so long since my last post.  My hair is a little longer.  I have been growing my hair since I had those bald spots from the radiation.  Started with trying to cover over the bald areas with longer hair and clipping it back over them to cover them.  lol  Now, it's gotten long enough that I don't want to cut it.  It has grown to be quite wavey and curley.  Longest I have had since I was 12 yrs old.  Ok, enough about the hair. 
What else is new.... Autumn is here, and it is the most beaurtiful time of the year.  Especially in cottage country where the trees line the lakes with so many different colours.  The pickeral are biting and so are the muskie.  Beautiful!  :)
I can't tell you enough how much CK has been one of the best decisions I have ever made.  The more I read and learn about the different methods to treat the vagal schwammy, the more I feel I did the right thing.  No one ever really knows of course until it's done.  Even then, there are the future results and complications to deal with.  But, so far so good.  I have an appt in Dec but I think I have to cancel that because I will be away on a trip.  Reschedule until January.  It is such a long drive for an MRI and the results.  But I also know it is with the best and most knowledgable so worth the drive.  3 1/2 hours... yeah.  :)
Everything has been going very well.  I do get my up and down days.  My voice is still a little raspy and some days when I over use it (which is all the time), it is down right hoarse.  I have lately encountered pins/needles and numbness on the side of the tumour from my skull down to my shoulder.  Also a high pitch ringing in my ear as well.  Have been reading about it and it is a trimignal nerve thing.  Better than the head shocks that come with it sometimes!  :)
Other than that, I am pretty symptom free.  :)  So far.... :p

So far so good.  Went to Ottawa for my MRI and appt with oncologist.  Say's the results are "favourable".  He can't say dead.  But when I asked him he said that it does infact look dead but he has to say it as "favourable".  Still has some little halo around the outside of it.  It has not shrunk tho and that is ok.  I was still getting symptoms because of the fact it is still 3 inches up there in my little head.  With such an amazing large brain to contend with for space, there has to be some issues along the way.
Very amazing story of a 12 yr old boy that had an operation on his vagal schwannoma.  To have a tumour like this so young, I think he is the youngest that I have come in contact with so far.  His mom just joined the vagal schwannoma Facebook page.  Wow, I could not actually comprehend such a thing happening to my son.  Such a thing happening to such a young boy.  It tore me up.  Yet, I am also calmed by the fact he is so young and strong he will bounce back so well.  His mom must be so brave.  Kudos to the family and they will be in my thoughts every single hour of the day.
I am attending the Tragically Hip concert here in Bobcaygeon.  Over 25,000 people coming from everywhere for this outdoor in a field concert.  It will be just CRAZY!  We have a 70 seater bus rented coming to the house to pick us up and it will be full!  Will be insane.  If you don't hear from me ever again it will mean I am a crushed concert goer statistic.  lol

What an amazing time on the boat cruise!!  25 friends went along and 16 of them started at our place in a bus we all rented.  LOTS of dancing, great music and the weather turned out awesome.  Came home after to a campfire and fireworks in our yard.  Great night!

Why is facebook funny.  Well, I just watched "Social Network" which is a story about the guy who created Facebook.  At one point he got drunk and blogged on the internet about his X and once he pressed, SEND,, the rest is history. 
Well, I have done the drinky, facebook thing.  Commenting peoples pictures.  Aggressively deleting people from my friends list.  Creating a Status that I can't beleive I even wrote and posting pictures of our good times as they are happening.  Then.... the day after comes along.  I start getting, "Why did you delete me from your facebook?".. lol.. obviously it's cause I don't have the guts to do it sober.  Great thing about Facebook is you don't even have to respond.  Anyway, I'm thinking they should have a breathalyzer attached to all internet accessing machines and if you blow over,, you are locked out.  Hahaha  Should I "Shark Tank" that one?
Next; Good times are priceless.  Well, on that note, I won't be able to comment fully on that until Saturday night.  I have 21 amazing friends going on a boat cruise/dinner/blues band dance... We have rented a bus to pick us all up and my one friends got us a great deal on the bus.  It's only a 12 minute drive to the boat cruise but drinking and driving is a huge NO NO in my books.  I am sure it will be a priceless night had by all.  
Lastly, a newbie to the world of schwammies wrote me today.  Discussing how she has a total new lease and look on life.  I could not agree more.  She discussed how riding on her jetski has a total new meaning.  Way back when I was first diagnosed (2 yrs ago) I took a ride on a friends jet ski.  I was diagnosed firstly with a cancerous tumour so at the time I thought I had about 2-3 yrs to live even after the treatment.  "Angels on the Moon" (link to the right) is a song that was constantly on my mind as I would drive in my car endlessly with no thought of where I was going.  Well, that day on the lake, the water so smooth like ice, the air still, the sun shining through a small haze across the water.  I was in heaven.  I still fight back the tears when I think about that moment on the lake knowing I may not be there 2 yrs from then but loving the life I had right then.
I know this is a long post, but every time I get a newbie write me it brings back the anguish and fear I had when I was first diagnosed and how alone I felt and scared but had to be brave for everyone else.  I only wish I had a way to ease their fear too....
Have a listen to the song... cause even at one point I looked at my boyfriend and said "Tell me the truth,, is there something going on with me that you know and the doctors know but no one is telling me???  I need to know

My health and body keep trying to keep me down, sometimes gets the best of me... but I'm all over that!
Decided that a strong mindset equals a healthier body.  I have always had that rational, but sometimes things get the best of me.  Not anymore. 
I'm putting my mind to feeling good even on days I may not.  It's sometimes hard because people will ask "How are you?" and I have to lie and say "Great".  Well, eventually I couldn't even do that.  So I'm back to the "Great" starting tomorrow.  I think that will probably steer me to feeling better.  lololol "probably".. let's just say "IT WILL".
17 days until my MRI and Oncologist appointment in Ottawa.  I love answers.  :) 
Found an amazing radio station up here in Bobcaygeon area and I think it's new.  96.7 FM.  It has new and old music, it has country, it has rock... Love those stations that play songs that I know every word to.  Too bad I can't even list off the provinces of Canada, but I certainly can list off the lyrics to 100's of songs!  One's I have not even heard since childhood suddenly pop into my head. 
Green, I love the colour green.... it's my favourite. :)

Well, thanks to my friends, I enjoyed the long weekend and they had me distracted and having fun.  LOTS of fishing with Naz... LUV my fishing! The throbbing, pain in my neck, ear and the pressure have about driven me up the wall.  Could be the barometric pressure, that's what I'm associating this to. 
Thought I was going to go to emergency and seek SOMETHING.. didn't know what but just something to stop the pain.
Anyway, did have an amazing time with friends on our deck, singing karaoke, dancing and roasting marshmallows around the fire.  The picture to the right is us and one with my guy!  I guess it's easy enough for me to add a new pic every day when I blog... a visual sortta speak.  haha