Saturday, May 28, 2011

Checking In

Hi all!  I just wanted to spend a moment to check in here with you all.  I know that when I go silent for awhile you start to worry, so thank you for your worries and thoughts.  But the good news is I am doing just fine! 

We are back in the waiting game however (PET scan in two weeks!), and we all know what that means.  This time I feel better equipped to deal with it as I have been spending most of my time working on ways to deal with it, such as qigong practice, meditation practice, walking, and seeing energy healers.  

So I am feeling more solid going into this next PET scan and there are times that I truly believe and feel that I am cancer-free, and that melts away all the worry.  These thoughts of believing I am cancer-free are very new to me as I have never been able to truly go there through this whole journey--through what I think? fear? the fact that I wasn't? my spiritual practice wasn't as strong?  But I do have tastes of this feeling and it feels great, and solid.  So I am going to sit with that loveliness when it comes, and when fear sets in, which it does, I am going just keep going.  

So PET scan is on Monday, June 13th.  That will be day 101 +.  I will also have blood work and another bone marrow biopsy (yuck!).  The Cook family is coming to visit the weekend before, so I am thrilled to have that distraction, let alone a weekend filled with laughter and love.  

Once I get clean PET results, which I will!, I will go back to work!  I will also be able to eat raw veggies again, and go shopping for myself in PUBLIC!!   So we are on the countdown now to a more normal life.  Just a little over two weeks folks!  And to put it in perspective, I've been in quarantine since Feburary 1st.  That is 4 months!  And I've been on this phase of the Healing Journey since the beginning of December.  So we are all ready for some normalcy :)  I never really knew until this experience how much I enjoy/need human interaction.  

In the meantime, I will be thinking so strongly with my heart and soul of my dear friends who are really struggling with their own journey.  My heart breaks when I think of all the friends I've lost, and I know the story isn't over.  We live and we die, yet the dying part can be so painful for those left here living. 

So let's all enjoy each moment and love as much as possible because we all never know when we will take our last breath.  

Love you!

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.