Vagal Schwannoma
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It's ON!

11/30/2010

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Tomorrow I head to Ottawa first thing in the morning for my first of three radiation treatments.  Wed, Thurs, Fri, all at 1 pm. 
*Am I excited?  YOU BET! 
*Am I scared?  Not right now, just relieved. 
*Am I optomistic on recovery?  YUP!  Just booking dogs for Monday now :)
I have my FOUR Ottawa survival kit items:
1. Naz
2. My soft cuddly bear Sue got me to comfort with... :)
3. Bottle of Baileys on behalf of Erin (half empty now cause of Sue!!!) lol
4. Blackberry (window to my world of Facebook, emails and text)

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Got the call (again... )

11/30/2010

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Ottawa still undecisive as to a start date this week.  Still may be Wed or Thurs, but more probable Wednesday.  Marika called.  That's her name and I have yet to meet her, but I know her voice now as soon as I answer.  I can understand getting everyone together, ok-ing it all, and synchronizing their time schedules also has to fit in there.  I'm a good waiter, AND my customers don't mind (most of them), the last minute calls so it all works out.
If I had to actually mention my condition here, which I will this once.  Just cause I hate being a whiner ( I even dislike the word "hate".. lol), but back to the whiner bit.. I dislike being a whiner.  So I always keep it bright and happy.  For myself and anyone around me.  I mean, seriously, what is worse than someone you ask "How are you".. and the LIST starts!  lol  So I'm the opposite.  I do my hair in the morning, and makeup, I head on out to groom and enjoy my day!  When asked, I say "I'm great!", and I actually mean it.
But, saying this once here... it's not always that great.  :p
I dislike the fact I am reminded of this 24/7 as it encroaches into my airway and I can feel that!  Didn't need a doctor to tell me that much.  My ear constantly has a feeling of fullness and sounds water logged to me.  At times, towards the night, there is enough swelling that there just is not enough room for my throat AND the tumour so there's competition.  Feels like someone has me up against a wall and is choking me.  Doesn't help I talk/sing my butt off all day and don't give my throat a rest.   Anyway, blahhh blahhh ,, I can go on.  But as I said, people would avoid me if I even started, as I do to the ones who do that to me.. haha :p
Just thought I would give a small idea of some of the symptoms I have because outwardly I act and seem fine, but inside, it's not always that way. 
OK, DONE! :P  Back to my self denial self. 
http://philadelphia.cbslocal.com/2010/11/19/philly-cyber-knife/
Hoping this blog helps:
A) My customers in following along with my "stuff" and when I'm up and running and how this will NOT affect me at all :p
and
B) Giving many people the inspiration to wake every morning like it is your last.  Healthy one's or one's who have "stuff" going on with them, we are all above the green grass / white snow so smile, learn and advocate for yourself.
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Gonna be a Postie-Toastie party now

11/28/2010

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I didn't get to my party, as I was so severly sick from the CT scans and Mri and contrast stuff from last weeks appointments.  By Friday I just was getting to feel a bit better and didn't think I should over do it so stayed home.  I did go to Naz's Christmas party on Saturday and had a wonderful time!  (Picture to the right).
Want to mention too that not only support from family and friends, but support from work is so important.  My own customers are so accomodating with the recent changes to the schedule that I need to say THANK YOU!!! 
Naz's work is so understanding and accomodating to him and giving him the time he needs to be with me at appointments and in Ottawa.  I cannot be thankful enough. THANK YOU!!!
So now, I get a call from Ottawa this past Friday telling me now that it is more difficult a procedure than first thought and they are still doing simulations to get it right so now it's changing to Wed or Thurs of this week for the treatments to start.  Was ok with me as I get two more days of grooming in. 
So looks like it'll be a POSTie-Toastie party for me.  OHHH one more thing lol
My neighbour brought me over an "Ottawa survival kit"... A Bailey's gift box with two glasses.  She hit it right on with that one!  lol..
One more thing.  Since I'm in a "Thanking mood", one other person needs mention.  Sue C., my long time friend.  Luv her and want to say that there is always that one special friend who thru thick and thin stands by you and supports you.. Sue is her!  17 yrs worth! :)
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Getting nervous, I admit it..

11/24/2010

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As much as I have been seeking treatment and know this is my only choice, I'm still nervous.  JUST starting to get nervous.  Lots of unknows still really.
I'm guaranteed  through others testimonies that I will resume life immediately the same way.  Ottawa Hospital also told me that my neck will swell, that the skin will burn and that I won't be able to talk.  Hummmm.... Guess I don't need any of that to groom. 
Then I just read how one persons tumour swelled 33% larger before it shrunk.  I can't say I didn't read about this stuff before.  I can't say I didn't know this is a possiblility along with the lady who had a stroke from her's swelling. lol  Just that as the days are ticking closer, the realities become more ...well.. reality.
One real good thing tho, I quickly throw all this aside and look at the fact I can get right back to work and enjoy my regular activities right away!  :p
I just mention my feelings here because I know there are many who like me, face these issues and all our feelings and fears are there, we just hide them, then move on :)
I'm having "Fun Time Friday" this weekend!  It's a "Pre-Toastie Party" celebrating my last party night before I get toasted up at the Ottawa Radiation Department. :) 
Oshawa bound this fri, I'm sure I'll share THAT story(ies) with you  lololol
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Home from Ottawa and it's 11 pm

11/23/2010

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I am BEAT!  Not much to say right now as I need sleep cause I have to work tomorrow.  I did my CT scan and that is when they fitted the radiation mask for me.  They took pictures that I will post soon, just not now... TIRED! :)
After all that, they decided to send me back up to MRI and re-do the MRI for a better matching comparison with the CT scans. 
I am so full of metallic contrast I'm glowing right about now! 
I will end this one with saying those Ottawa personal are SO SWEET.. all of them!
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Hi Ho, Hi Ho, it's off to Ottawa I go!

11/22/2010

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Tomorrow I will be in Ottawa to get my Mask fitting lol  Sounds like a wedding preparation for a dress fitting...
Also the last of my CT scans for the Planning or whatever it is the doc's do.
I am so excited for this all to be done with!
Naz has a long wait and has juiced up the battery in the dvd player and will watch movies.  He is such a movie hound!
By the way, something I have not touched on here is Family and Friend Support.  It is SO IMPORTANT.  That is 1/2 of the healing process.  
I will make a page just referring to Support.  Trust me, I know how difficult it is for those "watching" those of us.  Nothing you can do, nothing you can say that will remotely put you in the shoes of the one going through all this.  But if it makes you feel any better.  I know speaking for myself, "I would rather it be me, than someone I love!!!"  In a hundred years, it's better me than for me to watch someone I love go through this and have that "helpless" feeling of not making them better.  So count me LUCKY!! :) 
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Living and Loving

11/20/2010

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I live to love life!  Can it be said any better?  ok,, I love to live life.  :)
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Changes, changes.. lol

11/19/2010

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CT scan and mask fitting must be done before the MRI.  So thankfully Saturdays appointment is cancelled so we have a full weekend of relaxation.  Tues is still on :)
I know I have heard from some clients of mine that they are concerned for me and don't want to over work me.  I'm all about working and keeping my mind busy.  This will all have little effect on my work other than the few days of tests/preparation and the 3-4 days of radiation.  
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GOT THE CALL!

11/18/2010

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They called today.  I will log all my appt's and experiences here for my friends, family and others thinking of having C.K. to follow along. 
Firstly, they made an appointment for this Saturday for me to have yet another MRI to have more precise imaging and to locate the tumour for radiation.  So to Ottawa I must go!
Then, this Tuesday I travel back to Ottawa to have a mask fitted for my face for the radiation.  I actually thought it looked more like a net, but it is mesh and must be fitted using CT scans.  This will be used to keep my head fixed and secure.
So Mri and CT scans again.  Both with the same contrast solution they used last time.  Kinda makes me feel sick when it is put in.  They gave me sedatives for the Mri to see if I can totally relax through it as my tumour pushes up and cuts off my airway in the position they have me in.  Thinking behind the sedatives is that my body will just "be".. lol  Not worry about not being able to get air... who knows! :)
A blone moment comes in when I actually thought I could drive myself to and from the appointments but then, I'll be sedated!  lol  Duh!
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Waiting "patiently" for my phone call

11/17/2010

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I am waiting so patiently for my phone call regarding the MRI/CT scans they will need to do before the radiation.  Think I may call tomorrow because I must balance family and work in this schedule.  I do not plan on being off work because as the system tout's itself,, "Return to work the next day!!!" 
That is the most amazing part for me.  We will see.  :)
I'm also very excited because I have an appointment tomorrow with the new Doctor in the Buckhorn medical centre.  Needed to find me a new family doctor.
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    Author

    Hi, My name is Rhonda Edwards.  I was diagnosed with an in-operable brain tumour in 2009.  I will blog my journey so follow along and enjoy, share and learn. 
    Below is a pic of my guy (Naz) and me.  Giving credit where credit is due as he carries all my burdens and is my rock!

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    Needed some humour here! 

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