Monday, February 6, 2017

It's not easy...

When I first decided I would blog about my experience with bladder cancer I had absolutely no idea what a job it would be.  No one prepared me for the weakness, the loss of dignity, or the pain, especially in my bones. The pain has been incredible.  The chemo drugs cause bone pain, and so does the medicine they give you to protect the bones.

All these drugs, along with the cancer itself, cause severe fatigue.  I am so weak I cannot stand alone.  Juan has to get me up and down.  Just brushing my teeth causes me to lose my breath.

Then, there are the "little" irritations...like the PET scan provider called to say they cannot do my scan because my Specialist has not sent my PMD the necessary clinical information to obtain authorization for the PET scan.  God in heaven, I'm dying from bladder cancer.  What else do you need to know?

I have been wondering why my Lyrica, which I take for nerve pain, wasn't kicking in to stop the spasms in my legs and groin.  Then it dawned on me...they ordered me Neurontin, not Lyrica.  They are similar drugs, but different in how they work.  Neurontin doesn't treat nerve spasms the same way Lyrica does.  It's a cheaper drug, and it comes as a generic, so the hospitalist changed my medication.  I wish SHE could sit on a cattle prod while it is activated.  

There is the total loss of self esteem and dignity.  Those of you who know me know I have always been a fighter.  Everything I have ever had I had to fight for.  Now, I'm almost helpless to do even the simplest things.  It's embarrassing, it's demeaning, it's horrible. 

I know Macho Man doesn't mind being the nurse. I mind him being the nurse.  I mind him having to dress me.  I mind him having to move my leg for me.  I mind him having to empty the bedside commode, or help me turn over in the bed, or to get up.

This is not life.  This is misery.  I'm going to complain, scream, holler.  

Even so, I am blessed.



   

4 comments:

  1. I pray for you every night, Patty. I'm so sorry to hear how horribly this disease is treating you but I love your last 4 sentences. You are a warrior! <3

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  2. Oh Patty......you scream and rage all you want.......you deserve better than what you're getting. I'm so grateful that you have Juan and your daughter......and all your friends caring for you......I miss you and am sending you a hug......chemo sucks......feeling weak and not in control really sucks.....complain all you want......just don't give up just yet...;p~~~~~~~~~~~

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  3. Stay strong Patti. We are all here for you. Sending prayers and hugs!

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  4. Welcome to the hardest, ugliest and cruelest fight of your life darling Patty, because it is YOUR life that you're fighting for. You know good things don't come easy and you also know that one of the hardest things to ever do is to simply say "thank you"... for the littlest things. I watched Robert learn this lesson and it amazing to watch him in progress - as he came to understand that physical help was an acceptable way for friends and family to say "I love you", he became 'lighter' and more joyful about accepting it...... Breathe deep and look for the Light...... And, yes, I love your four sentences and please, keep screaming and hollering and laughing and crying and on and on........ And possibly somewhat less graphic about revenge on the bureaucratic idiots, please. :) I love you so much!!! Stephanie

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