Out (August 15th, 2011)

I am out.  Among the normal people who go places and have things to do that don’t revolve around a medication schedule.  Around my daughter who expects every ounce of energy that I can muster.  In a space that has privacy.  I am at my parent’s farm and I can hardly believe the version of myself that I became.  I was fearful of leaving the hospital and joining the outside world.  I felt like I shouldn’t be leaving a safe, sterile place that has all of the assistance I could ever need; I became dependent on the institutional atmosphere.  Now that I am a few days out, I am becoming more human.

I went for a walk yesterday and had to wave away mosquitos.  I grinned inwardly at the thought that I had even missed these pests.  All of the things that make a person feel alive, both good and bad, are vital in bringing comfort and adding that extra dash of vitality.  In the void of the hospital, I rarely missed a dose of dilaudid (a painkiller)- if I could mask the pain and be numb, I certainly did.  I felt like allowing the time to pass and just lay in a hospital bed until I (or more often, my Mom) talked myself in to going for a walk.  I became detached from feeling and being.  I was waiting for October, when I could expect to feel better. 

I am now in the thick of the pain.  The side effects of radiation accumulate and build until after the treatment ends.  The first night of being out, I vomited all night and became severely dehydrated; I was terribly afraid that I simply couldn't exist out of a hospital environment for the time being and I would have to go back.  I had a slow turn around and began to tolerate crushing pills to put into my stomach tube. My esophagus has felt worse over the past few days, and my tongue is still a mess… but I believe I may be on the cusp of a healing breakthrough.  I can hope this is the case.

My Aunty Cheryl was over for a quick visit today.  It was lovely to see her- I literally miss everyone... and I cried for the fist time in a long time… Cassy played a video of when I rang the bell after my last radiation treatment.  (There is a bell in dedication to a 5 year old girl who finished radiation treatments and it is a rite of passage for those who have completed their treatments- it was a very emotional experience for me).  I have shut out so many pieces of my experience for the time being, I realize this now, as I have slipped back into survival mode.  Thinking about radiation therapy makes me feel wounded.  Putting the journey into context and feeling proud of myself for being this strong, fills me with an intense emotion. I honestly can not believe all that I have had to endure.  It makes me thankful to not have known the extent of the treatments when I first heard the word cancer back in February.  My god, I would not have been able to keep my head up after everything if I knew I would continue to be knocked down.  I can admit this has been a struggle.  I will be the first to admit I am so god damned afraid for my life that I silently pray all day to be able to live. I am constantly on the verge of tears, but am physically unable to just let go and surrender a full-out cry session.  My throat is so tight and there is so much pain that when I start to tear up, I have to breathe and meditate through the moment.

On Thursday, I had to go to the hospital to get blood work done.  I also had a doctor appointment for an infection… my body is literally maxed out right now and any more stress could land me back in the hospital.  Being out in public was a scary experience- I was leery of everyone I encountered and wore a mask and gloves to ward off any germs.  I saw a few people I knew and literally could not make small talk.  I used to be the Queen of Small Talk, but I just don’t have it in me right now.  I am unable to relate to people.  I guess I may be in a different space soon enough, once I can apply some normalcy to my life again!  To go grocery shopping, have at least an ounce of a social life, not be consumed with my white blood cell count, not be on 14 prescriptions, …live in my home.  I’m just not there right now.  Perhaps I am forever changed and will never go back in that direction.

Boudicca.  My sweet girl is so big, so quick and so bright.  I am constantly in awe of her, as I feel I am getting to know her all over again.  She is so much bigger than the beginning of the summer- the last time I was her ‘full-time’ Mom.  She is a sassy little person who could walk all over me, and it wounds me slightly to say no to her.  I want to protect her and give her the world… and ultimately, she needs to be balanced and learn several vital lessons. I am so pleased she has been so resilient throughout all of this; it would have been infinitely more difficult if she was having a more difficult time with this transition. She misses Richard, but we are were we need to be right now.  The bond she has developed with my parents (especially my Mom) is beautiful and strong.  She has loved playing with her cousins and receiving love and comfort from my sisters.  And we will be going home soon enough.  Home… the concept of a home really has changed for me.  I have several homes, which is complicated but comforting.

Love to all,

M