one year anniversary

When I tink of this day last year I shudder.  I did not know for certain that I would make it through the day.  Looking back I now see how brave I was.  Going into that surgery with uncertain out come and uncertain that I would be alive after.  There was a possibility that I would die on the table.

THANK GOD I did not die.  I truly believe that had it not been for all the prayers,  my outcome would have been drastically different.  Yet here I am one year to the day later back to normal for everyone that doesn't live with me.  Looking back I don't know how or were I summoned the strength to keep putting one foot in front of the other.

Thank you so much!! You are the reason I am alive, You and your prayers and YOUR faith.  I had none sure I cast a few pleading last ditch prayers of my own but I did not believe they were heard.  Apparently Valerie Spratlin was right I have a higher purpose.  I do not know what that is but I am determined to find out. 


THANK YOU ALL!!!!!!

praying that she stays asleep

So my situation is different from most people in my tumorland.  Every case is unique and every tumor has chance of recurrence; but is my fear really justified?  Someone always tells me "don't borrow trouble".  I don't think I am borrowing trouble by being afraid.  I am scared $@%#less because unlike other people that have had their tumors completely resected and are in in full remission (I.E. no trace of tumor cells) snarla is just asleep.  Everyday I think "Will I be alive this time next year?".  I cannot help it and if you haven't been in this situation before you cannot begin to understand what that is like.  Don't get me wrong, you can and do empathize and for that I grateful. 
     However everytime you get a headache you don't think about the life threatening thing that is just dormant in you brain waiting to strike.  IF I die naturally it will be from brain cancer.  I have no illusions and I know that later today I could get hit by a bus. DUH.  I wish people would just STOP telling me that as if it is going to make me feel better.  I am Fully aware of just how fragile and precious life is.  I studied it, I have worked with hospice and I have also worked with old people,  as matter of fact I have ALWAYS worked with dying people.  I used to want to open a funeral parlor.  I am not morbid I was just over exposed to death in my developing stages.
Now I have cancer that will kill me if given the chance.   I don't want to dabble in coulda, woulda, shoulda, but I no longer no how to grab life by the horns.  I have lost a bit of myself to her (Snarla).  They told me I would only get back 90% of who I was before.  They were right and the things I lost were the things I did not need.  That is how to deal with this so I don't go insane. But I am noticing other things that were lost, history, names of historical figures, geography.  They say that the one thing that can never be stripped from you is your knowledge I am living proof that is a false statement.  Everything that you have, everything that you are CAN be taken away.
 I am NOT strong, none of us are; we just do like you, just trying to cope with this.  I am still figuring out how.
By rereading this blog it looks and sounds like I am begging for sympathy, when what I am actually saying is just give me ideas on how to cope.  Help me. I will be strong of spirit again and I am working on being physically strong again as well.

But if life doesn't challenge you, you are doing it wrong.

The amazing walk

So yesterday was an emotional day for us.  We went to the brain tumor walk.  To all of you that donated Team AJG raised a whopping sum of over $2000.  Thank you so much for your support I could not keep on going if it weren't for all the dear precious people that are there for me day or night, not to mention the prayers.
So yesterday was amazing to see all the people that got up early and braved the frigid temps just to support us.  It was stunning when all of us went up to the front and got our picture taken I was looking out into the crowd (which was massive 2000 strong at least)  I was overwhelmed with such emotion that I could not talk about it without starting to cry.  I was speechless and still am speechless. The support and will to live is so strong in all of us.  And we would not be alive without YOU.  So the next time you think of a cancer patient as an inspiration Please take a look in the mirror. Without your support we would definitely be dead.  So give yourself credit.

THANK YOU SO MUCH!!!!!!!

The Joys of Chemo

So chemo sux.  I assume all of you know the rep chemo has.
But what they don't put emphasis on is teeth  well they mentioned it but I did not heed them I had other things on my mind, like surviving.

Any way dry mouth is crappy side effect.  I have to have a second root canal on Tuesday. Bledsoe said "This one is on the house because you have so much on your plate"   Of all the things to get for free...  I don't like tools put in my mouth.

So word of warning to others.  Take care of your teeth before you start chemo because once you start having problems and go to the dentist it is already too little too late.

happy and afraid

If you have this disease you can relate.  Even though I had a clean (dormant tumor cells) MRI I can't help but have a twinge o anxiety when I get a headache.  Not only that, but I have a bone crushing wave of terror wash through me when I get a Sudden BAD headache.  Am I foolish to want another MRI now?  I mean in the beginning it grew 50% in a month  1 month and I had to have major surgery quickly so I would not die. 
I cannot wrap my head around this.  They changed my meds and Pam says I have PTSD from the experience.  She says it is normal but that doesn't stop me from being scared out of my mind. 

I am home with the dogs all day long.  Yesterday I slept for 20 hrs.  That scares me because the One thing everyone who has dealt with this disease has said is when it grows and hits something vital in your brain you will start sleeping ALOT.  I am so tired all the time. The doctors are hopeful that snarla will stay dormant forever, but that is simply a good front to make me feel better about actively dying.

To those of you that are used to me being cheery and funny in this blog I am deeply sorry.  This is how I feel and I have to get it out otherwise I will stew on it and eventually crack.

I have been thinking about people in my past from Ky and Ga and I am sorry to say that I am deeply ashamed of how I acted.  I never had any self control and I pissed people off all the time because I was angry about mom.  Dad said when I was little I would find out what someone HATED and do it over and over again until they gave up on me.  Now I really need support and I don't easily accept it because I was raised to never take anything from anyone.  Connie V tried to break me of this...unsuccessfully.  I don't mean to shun you for being nice to me.  It is just that I am so used to criticism. When I was diagnosed with this everyone changed their tune.  A 180  and it confused me.

I am working on not telling everyone everything.  I am just now realizing it is massively inappropriate. 

Bottom line I am terrified that snarla will wake up and quickly take me out quickly.  I wish she was on the right side of my brain. But she is nasty and mean as a snake.

I am going to have "OOPS" on my tomb stone....

So fellow cancer fans...
I went to the dentist today and she fit my with a bite splint  Unfortunately it is cutting my lip.  After that was my first workout.  Then I came home and took my chemo.....wait for it....

Then they called and told me that my platelets are low 76.  OOPS
Well whatever doesn't kill you makes you stronger.

Anyway, I have been writing this blog as a guide to other cancer patients as to how it feels to actively go thru cancer.  If anyone else got brain cancer and they went thru what I went thru and this guide helps them even a little bit better about having this terminal disease, then I have accomplished my goal.

Teresa was always asking me "What message are you trying to convey?"  Well Teresa above is your answer.

I spoke with my friend of over 13 years and I still care deeply for Daniel m,  we saved each others lives when we were 16.


My husband and sisters and assorted other people have been invaluable to me during this exp.  And I am a changed woman if you think I am inspirational take a good long look in the mirror.  You are my inspiration and support and I thank you for standing by me. 

Love you all, and barring an act of higher power I will be here for years to come.

News

To everyone that has supported us in the Brain Tumor Walk....THANK YOU!!!!!
    So yesterday I saw my oncologist and she said that the edema has gone gone down enough to allow them the see the scar tissue and DORMANT  cancer cells.  Mike was angry when I told him about the cancer cells and I attempted to explain they are dormant.  He was in no mood to hear it bc he is irked about something else,  anyway he called Vanessa and she alleviated his fears and clarified the information for him.

  He thought they got it ALL out and I told him that it was On TOP of my movement center so they couldn't possibly have re-sectioned the entire thing, otherwise I would be bedridden unable to speak or do absolutely anything for myself.  He says what is afraid of is it coming back more aggressive and resistant to treatment and  I will leave this world.   I told him that WILL happen there is No avoiding it, the only thing we can do is make the most of our time here together.  We hope it doesn't come back for years as in plural we would like to have at least 1 year with no tumor worries.  Is that so much to ask?  
It isn't me that is worried or scared or any other negative emotion.  I am simply waiting.

My motto:  Expect the worst and hope for the best.  (That way you cannot be disappointed)