All alone over here!

So I think this is the first day I have spent time alone in the last two months!  Hard to believe it has been that long since we got the diagnosis and Josh has been home.  Joshua is at work tonight, kiddos are asleep, and the house is all quiet.

I've been sitting here at the computer trying to do some school stuff but my mind keeps wandering back to cancer.  Uggghhh.  It's hard to believe that there will ever be a day that I don't think about it.  And I'm not even the one having to bear the burden of living with leukemia.  It's just making me stressed thinking about Josh being at work right now.  I've been worried about it for weeks cause I am so afraid it is just going to wipe him out.  He slept for about 4 hours this afternoon but I think the man was ready for bed but instead was heading out to the car.

Early on in this situation I read this message board post from other CML patients who were feeling upset and hurt with how other people were treating their leukemia.  That they are "so lucky."  You know, how a pill can just "fix" it.  Obviously that is so far from the truth.  This will never be fixed.  You know one of the first things the oncologist told us was that success with CML  means that you die from something other than leukemia.  It seems so grim to be hoping for that.  Anyways, this one guy's message keeps running through my brain.

"With the exception of my wife who has a front row seat, they prefer to think everything is fine, they don't like the idea of thinking of me being sick.  When they see me I look fine, they don't see how tired I am except I might catch a nap on the couch at Sunday dinner when I never used to.  They don't see me pause half way up the stairs to take a deep breath so I can make it the rest of the way.  They don't see me wake up in the morning as tired as I was when I went to sleep and have to literally drag myself out of bed.  They don't see me wake up every morning with a bad stomach ache.  They don't see that I can't enjoy a meal anymore and I just eat basics to keep myself nourished.  They don't feel my heart take off in rapid beats for no reason and scare the crap out of me.  They don't think about mutations, loss of response, and log reductions.  They don't feel that I am dizzy most of the time, that I can't concentrate that well, and that my memory is often slipping.  They can't understand that I've lost something, that everyday it takes all of my energy and determination to just to maintain some semblance of normal.  That hopes and dreams for the future are tainted and questionable.  Most of them don't worry everyday about how they will pay for their medication that they need to live.  They don't understand that I am not me anymore, I'm a bit different now."

 If you know Josh you know he's not quite that eloquent.  But it makes me well aware of what he is going through.  Most of those sentences have been spoken at some point over the last month.  And it just breaks my heart.  And he so perfectly verbalized exactly what I have been thinking about.  Over and over.  That our hopes and dreams for our future are tainted and questionable.  Tainted and questionable.  Those words have been playing in my brain over and over for days.  Blah.  I know so many people dealing with cancer are so positive and so upbeat.  But I'm just not there yet.  I think I'm still in that sad phase.  Where you are mourning the life that might not be.

So I guess the whole point of this post is to just say please be nice to my man. He would never say it but he really is dealing with a lot. 

Love ya JP!