Friday, September 27, 2013

JOURNEY WITH SANDY

Sandy Kugelman is my friend.  She is one of the women in the Stage IV support group that is featured in the film Pink Ribbons Inc.  They call themselves the IV League.

Sandy writes beautifully.  She uses Facebook notes to write her updates.  I asked her permission to reprint her words here. In true Sandy fashion, her reply, "Yes, of course. No need to ever ask."

As October looms large, let's remember we are in this to see change, to shake up the status quo.  Seeing the words significant progression weighs heavily on my heart.  How bizarre that the ion, changes the whole message.  Significant progress sounds like it would be success.  Add that ion and progress becomes progression and suddenly, the whole game is changed.

Except, this isn't a game and frankly, enough is enough....  And Sandy... I'm sending you everything on your list... prayers, karma, thoughts, woo woo and everything else you can think of....

xoxoxox

Addition to this post....  Sandy's whole story appears in a news article:  Writing Back To Cancer.  It's the whole story and it's truly an excellent read!  The link works today but it's a publication where it may "archive" .... thus, if the link doesn't work when you click, shoot me an email, I'll be happy to hunt it down.


Dear Everyone,

I've noticed that a lot of people use the term "cancer journey" lately and I just want to say that this is SO not a "journey". Journeys are voluntary and they connote something positive. Perhaps baskets of goodies to Grandma's house? An adventurous trip to a faraway place? This is neither. I'm sorry if I'm bursting any bubbles of inspiration, but this is my truth right now and I've always been honest with you. Stage IV cancer is not a journey. Maybe some other kinds of cancers are, I don't know. Just don't call it a journey when someone is in the thick of it. There is nothing fun about it and it is filled with the deepest sadness and loss I have ever known. Not a journey at all.

Today I had a CT scan of my chest, abdomen and pelvis. We have been concerned about my digestion, my constant fevers, and what appeared to be ascites. We have discovered that there has been significant cancer progression in the whole area. My lungs are worse, my liver is worse and now there are significant tumors in the peritoneal cavity as well. 

So now we have some answers: My constant fevers are indeed "tumor fever". My digestion issues are a result of minimal space so it puts a lot of strain on my system to eat more than a teeny amount. It's a puzzle to me as to why I could eat ridiculous quantities on steroids, but I'm wondering now if the steroids kept the swelling of everything way down and was a temporary fix.  

The Plan: We will stay on Doxil. It was very effective before and we are hopeful that it will be equally miraculous this time. In 6 weeks we will scan again and if there is disease progression, we will switch to a different drug combination (Carboplatin and Taxol for the fluent speaker :). 

So that's today's update. Oddly, I have felt a little better the past two days. Go figure. It reminds me of when at the end of our dog Hector's life, he was running friskily around having a great time and my mom said, "Look at him! He's so happy because no one told him he has cancer!" AHHHHAHAHA!!! SO TRUE!!!!

Please keep sending those prayers, karma, thoughts, woo woo, jew jew, love, etc. 

Sending love to all of you.
Sandy

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8 comments:

  1. AnneMarie, Since I have found you (almost 3 years now) and all the blogs related to this disease, there has been 6 deaths that I know of and various others in hospice. This breaks my heart each time I read of the loss, the husbands without wives and children without mothers. What scares me more then anything is one of these days I will be one of them. I want to send Sandy my love and all my prayers and karma, and anything else that will help the medicine work and recovery to keep her writing and teaching us. I know you will keep fighting for each and everyone of us. Somehow we need to break down the walls, sooner then later, so we don't have to read about another beautiful lady dying before her time. Prayers, Prayers and More Prayers.
    Love from Texas
    Christine

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  2. Thanks for sharing Sandy's note. I'm sending her love and praying that the meds do their job.

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  3. doing all I am able to send Sandy my most powerful vibes for healing, lots of love and warms hugs, and beams and beams of the bright, shiny light of HOPE. thank you Anne Marie for sharing Sandy's letter.

    love you, XOXOXOX

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  4. This one made me cry. I hate this f*cking disease.

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  5. It's such a helpless feeling... I wish I could do more than say I'm sorry about your friend, AnneMarie. It's just so unfair that woman after woman after woman has to endure this, along with their family & friends. During my quiet times of prayer, when I'm pleading with God to have mercy on everyone with this horrible disease, I can't help but to sometimes ask why. :(

    I hope Sandy sees this & feels the love I'm sending her way... and your way too.

    ~Andrea
    XOXOXO

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  6. I'm sending prayers to Sandy. I use the word journey because I feel like life is a winding road and cancer stays with me on this journey of life ~ and I'm not in the thick of it right now. Big hugs to you both! xoxo

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  7. Thank you ALL...

    Sandy did see the comments and I am grateful for the support you have all shared here. It's not my normal "thing" to do a blanket thank you but, October was looming large and now I'm up to my EYEBALLS in running around. Strike while the iron is hot. People are paying attention and everywhere I hear anyone talking about "awareness" ... I'm changing it around to a teaching moment.

    MUCH love to each and every one of you!

    xoxoxo

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