Saturday, May 9, 2015

Breaking the fragile shells we build to protect ourselves

 “Nobody knows the trouble I've seen
Nobody knows my sorrow” Spiritual

I listen to the Louis Armstrong version of this spiritual often. It soothes the troubled soul at the especially trying times at night, at hospital visits and at airports.

At night, I have this recurring nightmare that a grate is pushing down on my chest and I’m struggling to breathe. I wake up gasping for air. My heart is racing. I have to sit up until my breathing and heart rate is somewhere near normal again. The fluid pushing against my heart wall is not actually dangerous, it is just uncomfortable. I can’t breathe if I lie on my right side and I feel short of breath when I run. Of course, I cough when I lean forward.

I have completed one cycle of Xeloda but don't think it's working so I asked to increase the dose. I'm now at the maximum. I'll deal with the side effects, just help me get enough air.

There is a bit of an imposter in all of us. We say we are fine when we are not because that is the convention. I pretend to myself and others that my life is normal, but the shell I surround myself with is incredibly fragile. It shatters regularly at hospital visits because this is where I hear the bad news, fight to get my chemo and am crushed by the suffering of others. 

My fragile shell is sometimes shattered when I try to live life furiously. The conflict rages on between living life furiously and just living life. I have the endless battle of the spirit is willing but the body is not able.


  1. I am inspired equally by your courage and intelligence. Thank you for sharing your thoughts. I am rooting for you across cyber space. Life simply isn't fair but your grace in handling what you have been dealt makes me proud to be human.

  2. I think we all live in a certain level of denial. When it gets shattered we have to put it back together again so we can function as normally as possible. I was extremely depressed when my treatments were obviously not working - I could tell the cancer was spreading and it felt horrible - which is why I pushed for chemo and HER2+ meds which turned out to be the right decision for now. I hope the upped Xeloda offers some relief soon. At least mentally. <3 you.