Thursday, May 5, 2011

The Butterfly


Okay, here we go.  I am sitting down to write this blog post.  I know it has been forever since I've updated and I've been wondering why it has been so difficult for me to get here and tell you how things are going.  And, I guess what it comes down to is that I am still trying to figure that out for myself, so how can I tell you?  I think people, when they ask me how I am doing, are really wondering how's my energy?  how's my nausea? etc.  And I can answer all those questions, but what is really going on with me is so multi-faceted that I find lack of words to truly explain it (and I wonder how many people really care to hear it).  There is the surface layer which encompasses the physical well-being, there is the mental/emotional layer that is still processing what I just went through--good and bad, there is the intellectual layer that has spent hours pouring over scientific literature trying to make sense of my disease, treatment and recovery, there is the social layer with me dabbling back into my circles and wondering how I can relate back to my friends when our lives have taken such different paths, and then there is the spiritual layer that has deeply seated into my psyche yet yearns for more answers and experiences.   Now add to that the mixed bag of emotions that comes with the upcoming PET/CT scan, bone marrow biopsy and lab tests that marks my 100 days post transplant mark (38 days from now).  Excitement for the 100 day restrictions to be lifted and life getting back to more normalcy, nervousness for the results.... SO---lot's going on in this ole noggin.  And outside of the noggin for that matter...(I am trying to get out of there as much as possible!!!)

Yesterday was my 2 month anniversary of my "rebirth."  I spent it outside most of the day, in the sunshine, with the breeze blowing through my head scarf :p.  I read a lot, laughed, enjoyed the company of my parents and got to people watch.  I am not allowed in public, but I did sit outside in a public park at a coffee shop.  I, for all intents and purposes, can say that I am doing pretty well.  That is the down and dirty.  But this whole experience has left a deep impact on me and it is going to take years, if not my lifetime to sift through the pages.  I am changed, am changing, and am also the same ole Evie.  My eyebrows are even starting to grow back!

Gosh, it's crazy....I have SO much to say, I am tearing up just writing this and the fullness of content I could be relating to you.  But I just don't have it in me right now to share.  I hope I do capture these feelings, at least for me.  Maybe by writing it will help me sift it out.  But for now I think I'll just leave you with some photos of me at different points in the journey.  At the onset I wanted to take a picture of me every week to mark progress, but in the trenches, I really had no care in the world to do anything but survive each day.  So here's what I got....
This is the morning of discharge after 8 days in the hospital.  My mouth sores had healed by then, but you can see my mouth is still a bit swollen.  I look grey and pasty.  But, it just a few short minutes after this photo was taken I ate a bowl of cheerios...the first solid food I had in 8 days.  
This is the same morning, I turned around to get a picture with the rising sun on my face.  I wanted you to see the IV pole that at one point had something running into all three of my catheter lines.  That was a noisy sucker, but kept me alive.  Those drugs that were pumped into me cost $48,000 over the 8 days. 
This is me on the day I got my catheter removed.  In retrospect I am surprised I was smiling as I had just been through an incredibly painful procedure that was supposed to "not hurt at all."  I was given no drugs, and there were complications with getting the catheter out.  But, like so many times in these past two years, I was saved by the kindness of strangers.  The nurse that was assisting let me squeeze the heck out of his hand and he had a large belly that was pressed up against my shaking body that oddly felt comforting.  
This is me on the land, and boy can I tell you how fast my recovery moves when I am out there? This is halfway up the mountain that I've hiked now several times since transplant.  It is invigorating and makes me feel alive.  That earth is healing.  
Mom took this of me.  I was really in the middle of fixing my hat, but I love this picture because it reminds me of how I feel when I am doing qigong--like I am washing bliss energy from the earth and the heavens all through my body as white light shines down upon me.  
Happy happy happy.  Me on the land, resting during a 4.5 hour hike!!
In Love
One weekend when we were up in the mountains, we laid a blanket down by the waterfall and just soaked in the beauty of it all.  This was the view I looked up at for almost an hour.  It was a lovely day.  







10 comments:

  1. Oh, goody! A new post!!! I love it!

    And I love you -- more than I can ever express! This time with you has been great and special for me, even though you weren't enjoying some (much) of it. You are beautiful.

    Mom

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  2. Oh man! What a post. "The pictures say it all" ... but then they don't the words you share tell a lot too. And I am tearing up. WHat a journey!! I am so grateful, over and over to be walking along with you. Such a blessing!!! tears anoint.
    You've posted on my birthday and I just so happen to have the song "A Very Merry Unbirthday to YOU! running in my head. So, I sing that to you - with love and happiness.

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  3. I can totally understand the sifting. I'm still sifting my experience, but there will be precious gems of friendship, nuggets of knowledge and the flowing of healing waters along with the dirt that sinks to the bottom. It's a process, but that process is a gift of life. HUGS!

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  4. It is delightlful to hear about your progress and progression! And dang I remember the port coming out and it was horrible. I was so looking forward to it thinking I would get the "cocktail" and then BAM....no drugs, no novacain.....and it took two of them to get the damn thing out!!!! Whoever decided that this is the way to do that obviously has never had a port. Mine was in for 2 years and had grown attached in every sense of the word!!!

    I think about you often and wish you well. Healing energy coming your way!

    XO
    Kathleen

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  5. I love you Dear One, you are most precious and richen the lives of all you touch with your sweet sweet spirit...looking forward to huggin you LIVE real soon and keep the posts a comin....you will never know how inspiring you are to me...and the world! luvonyersweethead! xoKaren

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  6. When you walk thru the storm hold your head up high and don't be afraid of the dark.

    You my lovely daughter shine! We walk with you each step of the way. Holding you dearest to our hearts with much love momma2 and daddy2 bless you sweet one.
    Go now climb your mountains I/we will be beside you all the way to the top and back down again. Much love.

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  7. Hi Beautiful Eve,

    Thanks for sharing this part of your journey. Your words speak directlty to my heart. I am sending you lots of love and light!

    Kathleen Cook

    PS - All of the photos are wonderful, but my fav is "in love"!

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  8. Thanks so much everyone for your comments and inspiration, and stories. Loving you all so much!!

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  9. I'm always so happy to hear you're doing well Eve. You are always in my thoughts. :)

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  10. Eve, my little sis had her ASCT in July last year and had 30 days in hospital. She recovered very quickly once she came out of hospital, was back at work a few weeks after and is now living a normal life. Her recovery has been nothing short of amazing, and I hope that is the same for you. Have they talked about an LBH589 (Panobinostat) trial for people who relapse quickly after ABVD? She is currently on this trial, which is worlwide. Perhaps it's worth following up. It's not great that she's still on medication 10 months after her SCT (which will stop at 12 months) but if it gives her a better shot at a long term cure, then it is worthwhile. Here's to many wonderful days ahead as you gradually improve and get back into life as you knew it.
    Take care,
    Jacinta (Australia)

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