Saturday, March 13, 2010

Exactly Six Months from Diagnosis

We evolve, we change, we fall apart, and then we get used to things.  As we go through life, we adapt and somehow survive or thrive ( I won't go to the other option).  I am noticing a change in me.  I am not sure it is thriving, surviving, or just being too wiped out to be motivated, but I have been blogging a lot less.

Let me explain why this is a big deal to me.  Pouring out my thoughts and feeling on this blog was a survival thing; I could be sitting next to Sammy in hospital, wondering if he would make it through highly toxic intrathecal chemo and feel a release by writing down my thoughts.  I would feel helpless and desperate, overjoyed or relieved, and blogging helped me work though the emotions and pain. 

Believe it or not, Sam has just spent another week in the hospital!  He went in last Thursday with a high fever having had one of the worst first cycle weeks ever.  He was in great pain, could not eat due to lesions in his mouth, and was generally very sick.  Then we spent a week in the hospital, preceded by hours in the ER, hooked up to an IV providing antibiotics.  Sam's counts had dropped so low so quickly, he was even taken off all chemo AND his regular antibiotics for the rest of the cycle.  Yet I did not blog!!!

I put my lack of communication down to a variety of factors.  Sure, my emotions were running just as high but they felt more familiar...repetitive...did I really want to relieve them AGAIN for the sake of writing them down?  That wasn't why I blogged, I used it as a release...I didn't feel it would serve that purpose now.   There was also the fact that, for the first time ever, Brian and I had to go to work through the hospital stay, so we were alternating sleeping at the hospital, going to work, and going home to recharge/take care of the home front.   There was a craziness to every day and respite, no energy.  Blogging was not a priority. 

Finally there was the fact that I was feeling very guilty.  Strangely, I had forgotten so much about Sam's treatment; his roadmap both ahead and behind.  Had I become apathetic to the whole thing and stopped checking up on every minute detail and obsessing about where he was and what was to come?  Obviously, I should have been more careful, as I was very surprised to learn he faces his next LP (lumbar puncture) next week!  Wow!  A few weeks ago I would have been on top of that.  Perhaps I was focusing too much on the report cards I had to do? 

Needless to say, I am at a different point in the journey.  I am mourning the loss of my 'old Sam' and still dread week one of each cycle, especially as they are getting worse due to the chemo accumulating in the body.  I am now driven to ensuring Sam receives PT and sees a psychologist to help him through this; we are working with his teacher to have him evaluated etc.  Life is too busy to have the luxury of letting my angst out to the world.  We have to keep on living and going through the mundane necessities of life and tend to "just deal" with the blows leukemia throws us.  Is this a positive development?  I am not sure.  Oh, and we close on a house on May 6th...just to add an extra aspect of stress to our us!

1 comment:

  1. Katy, your bravery and humility astound me. In the midst of all this, you are able to keep your head, see clearly and cope with this truly miserable situation. What's inside your head is as big as your heart, and though it may not mean much now, the world is a better place because of you, and your vision and words.
    Hugs, God bless, and love,


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