Friday, October 19, 2012

Stuck in limbo....

So I this entry I am just going to "cut to the chase" as they say...(ever wonder who the hell "they" are when folks use that "as they say line"??)
"Test" are done....funny you think test in high school were the "most important tests of your life"......then there are the pre college exams.....blows those baby high school tests right out of the water.....then there are the actual college tests which made the pre admissions tests seem like childs play......yet everyone of these tests is designed to be a mile stone.....a "stepping stone" so to speak, each designed to prepare you for what lies ahead of you......pass = great move forward, fail = sucks but can try again till you get it right.
NOTHING in my life has ever prepared me for the testing that I have gone through since this past Friday and worse than that no one has ever given me the lessons or tools that would help keep my sanity while I await the result.....if there is a purgatory I imagine it is something like this state of limbo I feel like I am caught in.
These are no longer Pass/Fail tests.....there was no studying in the world that could have prepared me for them and yet 
Would like to think that if something was "terribly wrong" I would have received a phone call (you know like they show in the movies) truth be told, by doctors probably haven't even looked at my results and probably wont until just before I head in for the results on Monday.......and besides what are they going to do call to tell me "you have cancer".....that was so "last season"
Been feeling a lot like that lately , like a TV series that went on hiatus, things got quiet, some of the actors have left the show all together, some have moved from supporting roles to main character roles and there have even been some new additions......"fans" got quiet and now all my "fans" are eager for the "season premiere"......
The episode called "THE BIG NEWS....."

So, what's been happening during "hiatus".....not a whole lot. 
The physical pain has become a constant battle, just the physical act of lying down or getting up from a lying position can cause pain enough to make me cry out....I try to get up and out of the house, but most days I just sleep the day away......seriously up between 6-8 AM then back to sleep on the sofa by 10-11am and I usually wake around 4pm.
I have found that days out, like Monday and Tuesday back to back testing left me more tired and in a whole lot more pain by Wednesday than usual.
The crazy thing is I just can not figure out what the hell is going on.......It is like there is a constant fire burning in my chest then at times there is a sword being stuck right through the center of me.
and of course being the ICU nurse I want answers and I want them NOW !!

Is it the lymphoma taking up more space in my chest??? Is it the damage that was done to my heart worsening?? Is the lymphoma gone...but now this is how I am going to be left thanks to "what cured" me?? Was I misdiagnosed......did we miss something.....should we be testing for this.....what about that....should I risk what money I have to "survive" on for "alternative treatments" that in the end may give me survival.....
Who am I any more.....
I think its understandable and probably to be expected that this is all taking a bit of a toll on me mentally.
Depressed.....yeah I think so. Suicidal NO WAY....but wondering if death would be a better route than living with all of this pain, sidelined - unable to do the things I love......watching everyone else move on.....
I have been "living"  on Google trying to figure this all out. Hate to admit it but spending more time crying than laughing

Waiting for test results that can potentially affect you life expectancy or the possibility of more torturous treatments meant to prolong your life (irregardless of what they do to the quality of it) can take a toll on you.

And for those of you that like to remind me that there are others out there there that have had or have it worse than me, that like to tell others I should really just "suck it up" and "stop my whining" 
That is your shit, so don't put it off on me.....
this is MY LIFE and my life has been turned upside down and inside out in the past 10 months.
This is about one person ......ME and MY battle to the death...either the death of my cancer or the death of me.
Sorry, I am realizing I really don't have a whole lot to say in this entry......I keep writing and deleting.....writing and rather than "force it out" I will chalk it up to just being exhausted - physically and mentally.
Wanted to at least give you all the heads up that testing is done....results will be in Monday....I will need some time to talk to folks in person/on the phone so will relay the results here on Tuesday.....

One day at a time, one foot in front of the other...

As always THANK YOU for all of your constant caring, support and generosity. I truly can not image what the past ten months would have been like had it not been for ALL OF YOU!!


A message from my great friend Jill relaying something my little 9yo buddy/her son had to say:
"At dinner tonight Joey said he thinks he discovered the cure for cancer. I said what is it? And he said LOVE"

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