Wednesday, July 24, 2013

The Power of Connection

"We don't accomplish anything in this world alone... and whatever happens is the result of the whole tapestry of one's life and all the weavings of individual threads form one to another that creates something." Sandra Day O'Connor.
Recently, I received an email from Grace Goldstein, the Chief Operating Officer of the Carcinoid Cancer Foundation, letting me know that CCF had featured my blog on their Facebook page. I was honored and touched by her faith in my words.

...from CCF's Facebook Page

Sometimes I forget that I have a rare disease. And sometimes, I think I'm cured. And then I get test results and realize - nope... I'm still a medical mystery.  CCF is an amazing place where carcinoid patients can connect and educate themselves about this rare cancer.

I would like to share a recent message I got from a fellow zebra, Christina, because sometimes I forget that I write for more than just myself. I get lazy and down because I think - who's really listening anyway...right?  I mean... I'm just writing words so they can aimlessly float around in a starless cyberspace... so who cares if I go for a Red Mango Fro-Yo instead of blogging? (Red Mango is delicious by the way, but I digress.)

But Christina and Grace, and all my fellow carcinoid friends, help remind me that one of the purposes of my blog is to connect --which not only might help others facing the same baffling carcinoid questions that I do, but also help ME continue on with this quest, which sometimes seems like a never-ending riddle that gets even more complex with each lab print out and doctor's furrowed brow. 

Below is part of an inspiring email I received from a fellow zebra Christina (visit her site at Caring Bridge)

Hi Beautiful Marlena! 

My name is Christina and I am a huge fan of yours.. not only have you lifted my spirits, helped me to feel less alone (less alone regarding the whole Carcinoid nightmare), your whimsical and soulful writing has also opened my heart and helped me heal.. thank you dear one.

I was finally diagnosed with Carcinoid Syndrome January this year (having been misdiagnosed for over 5 years ) By February I was in Carcinoid Crisis and by Feb 21 my surgeries ( liver 70% taken out. Over a foot of small intestines taken out and several organs removed for good measure). Since then I have been in ridiculous pain 24 / 7. Have had bile leak, followed by a mean bout of painful gut retching pancreatitis, stints put in and several other issues that have come up since.
Needless to say I feel lost, tired and scared…..
To say it has been a Hell ride would be an understatement.. it has been – by far – the worst experience of my life.. yet there have been some miracles along the way .. Back to YOU. Thank you for your brave willingness to share your thoughts, efforts, feelings, hopes, … your LIFE! You are such an inspirational Lady and this makes reading your posts that much more interesting and uplifting!

So, dear lady, I wish you and your loved ones AND CCF all the love and healing in the world. Hopefully our paths will cross. And may you have great health and many years of adventure and bliss and love!

Warmly and with Aloha

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