Open and Shut

I don't write often here anymore.  There are so many platforms for outing oneself these days, Instagram, Facebook, Twitter, online articles, comments containing bits and pieces of our lives.  I try to judge carefully...protecting my family, my future.  I choose very carefully what I share and who reads my thoughts, my dreams, and especially my very closely masked fears.

I miss throwing words on a page, exposed and raw, asking for debate and opinion.  It is a difficult thing to do, deciding what parts of your life to share, and what to hide,  if I want a new job, will my writings hold me back? Can I truly be open with those who don't know me well, who don't understand the world of me, where I came from and why I am like I am.

How do feel about the raw exposure? How do you keep those close to you safe?

Chemo Days

I walk into the room, which smells of alcohol age and despair. I step on a scale, no significant change. I chose a chair and open up my shirt unzipping it to expose the familiar lump in my chest, the port that was implanted for this one reason.

"Take a deep breath and exhale", the familiar phrase is heard. And as I do I feel the familiar sting and pressure of the needle, followed by the metallic sweet flavor of sailing pouring into my veins.  I see the bright red. Blood fill the small endless tubes that. Hold the secrets of me. I pull out my IPod and set it to Make it Rain by Ed Sheeran -  my latest favorite from Sons of Anarchy.

Once my temperature is taken, and my blood pressure, pulse and oxygenation are recorder (all relatively normal) I watch the cold seemingly innocuous fluid drip into the connected to my chest filling me full with literal poison. It will kill cells both good and bad, in hopes eradicating my tired, worn out body of the disease that the s slowly killing me. Isn't it strange to try to cure someone with the very thing that can kill them?

I listen to the words of the song, my eyes closed, trying to be somewhere else...anywhere else but here. As I wait, I wonder...

When this is done, will I be filled with unrecognizable energy from the massive dose of steroids given to me to accelerate the effects s of the medicine? Or will I be blinded, struck down with inconsolable nausea and headache?  Will I be able to do anything with the rest of the day, the week? Will this be the medicine to help? Or will this be yet another exercise in futility?

Dream a Little Dream

I dreamt of you last night.   I kept trying to fall asleep to see if you would be there.

Into the Unknown

I received a call ( well three calls actually) from my hematologist /oncologist wanting to see me. In person. Tomorrow. This has never happened before and I have to admit that I am scared. The calls came right after my last blood work came back. And, they did a lot of different cancer seeking blood work this time. At first I thought maybe she was going to move forward with the bone morrow transplant, but then she ordered a CT scan of my lungs too...the waiting is too much. I'm sleepless and worried. 

Prograf

I am being switched from the evil skunky cyclosporin to Prograf for treatment of my aplastic anemia.  This is a great thing for many reasons (no more throwing up every day, and so much less of the stinky drugs), however it appears that I am going to lose my damn hair AGAIN.  

I just got my hair back. Yet as I look down at the stupid hospital pillow, well...there is my hair -on the pillow instead of attached all nice and neat TO MY HEAD.  I know I shouldn't complain....that I am so so lucky to have medications that are keeping me alive and all that, but give me a break already. I call uncle.