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Stream of Consciousness Writing During Chemotherapy for Sarcoma

Mathew’s Journal 
4-2-14

Writing small vignettes. I need to organize that book that I’ve been working on for so long and it just feels like clutter
A lot of useless words with a lot of useful words in between.

Thinking about cigars and culture and a sense of self-importance with old bandmates, sure we would be signed by now.
-not aware of the numerous problems and complications that would arise within our lives.

Joseph and I have grown more distant but a lot of it is I don’t think he knows how to cope with what’s going on with me.

Me lying in a hospital bed in a puddle of the hair that’s shed from my head. And all the other fluids that leak from my tubes. And my tubes that pass drugs to me to help cope with the terrible, but hopeful shifts in my abdomen.

My phone seems to sing the most when I am sleeping.
Not one of those normal sleeps where it is easy to wake.

But rather the type of sleep where you are fighting off the dreams and tendrils of sickness and medicine.
Where there are worms, faceless creatures and jungle landscapes where exotic bird calls echo through the canopy.

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