Tuesday, July 28, 2009

I lay mostly in my garden room now. Today, it is extremely hot and I can hear my daughter squelch scream laughing through the french doors and someone washing the dishes
through the door in the other room. For a few minutes, I pretend I have the flu.

My back hurts and I am unable to walk on my own. Apparently the nerve block didn't work. Nor did the cisplatin or bevacizameb or green juice or radiation therapy, or massage or acupuncture or 5 mushroom formula, because it seems my bones hurt, my back and side ribs hurt, and walking looks more like collapsing.

Am I complaining? Hells no. Well maybe a little bit, but the thing is: 1) Besides my usual badass community of support, my entire immediate family is here to rally around me. and 2) I still have my wits about me more ore less. Yes - I could still fight. I could get myself a wheelchair and pretty soon some oxygen tanks and tubes and read and read about how to beat this. But the thing is, it's time for me to make peace. It's time for me to admit to myself that everyday the Pain is getting worse.

I like my garden room. I remember painting it (mosaic green) with my friend Kathy while I was about 6 months pregnant { I had a mask on.) (eco paint, ok?). we were laughing a lot because we are idiot painters, but then for some reason when Bron Y Aur from Physical Graffiti came on, I started to cry silently. It might have been the first time I had ever cried actual tears "of joy".

We moved Luka's room upstairs about 2 years ago, and now the mosaic green room has French Doors, that lead out to a pretty back porch (built by Frank Camp and Aaron Beam and my husband), which leads out to 1/3 acre of pretty gardeny joyousness.

Every few days, my dear friends Kathy and Thandi wash my body with soft cloths and peppermint soap. They did some research and found that babyoil in the wash cloth moistens the skin enough to make it less sensitive to touch. It works. My naturopath, Molly O'Neill, comes to this room to give me acupuncture and I am lucky enough to have two friend massues, willing to enchant the garden room with their magic Pain relieving skills, Danielle Lanier, and Ana Helena DeCastro (who insisted on coming and doing some work on my family and friends who have been busy bees around the house and who's homemade cottonseed oil probably works even better than baby oil so maybe we should try . My Dad brought me a Hot Fudge Sundae from Dairy Queen.

I'm not trying to boast (again) about all of the great friends and family I have. It's just time to let go of the Pain. It's time to teach my daughter the beauty and strength in surrender; it's time to show her the absolute courage it takes to fight with all the power you have and then realize the
Pain is not going to stop until you give it the word.

My beloved bathers, my massues, my acupuncturists (thank you Tom at IEP as well); they cannot stop my furious cancer, but they can help me fight this enveloping Pain.

And when the Pain is gone, I can hear endless belly laughs on the porch and pretty music in the far off distance.

34 comments:

  1. Stay strong. My prayers and thoughts are with you and your family.

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  2. i'm going to belly laugh twice as loud to make sure you can hear me.
    love love love

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  3. Dear, Sweet, Bad Ass, Brave Heart Julie

    You are Brave Enough, you've been Brave Enough at every juncture in your Crazy, Furious, Journey! ONLY YOU KNOW!
    What you just conveyed about teaching Luka about the beauty and strength in surrender...the courage to fight...the courage to let go, to realease...these very words I had in my heart to say to you when I saw you last and I could not speak...this is what I had meant when I said you are brave enough. You are an Intregal part of the WEB, The TREE OF LIFE...Julie, you will live on through others...especially LUKA and the rest of your sweet family.

    Teacher Julie,

    you have taught so many of us the True Meaning of Bravery, of Strength and of Courage.

    Thank You Again!

    On another note: I owe Scott some falafels...let him know I am making good...I'm planning on bringing them by sometime today! xoxoxoxoxo Melissa

    I'm so glad you had a Hot Fudge Sunday from DQ it's been totally bugging me that you haven't been able to have any thing sweet...Peanut Buster Parfaits are my favorite!

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  4. Dear Julie,
    Thank you for writing again...for sharing and revealing your beautiful SOUL to all who have prayed for you through this most difficult of journeys.
    YOU are our teacher... YOU are the preacher...
    showing us the true meaning of words like courage, strength, love, dignity, grace and acceptance.
    Your very essence shines brightly in our hearts. A gift we will always cherish.
    Love to you and all your family.
    Sandy and Hayes

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  5. I just chanced upon your blog a few months ago and am continually awed and inspired by you. I cannot think of anything new to say that others have not already said, but you are a uniquely lovely person who will never be forgotten by those who know and love you. You've done everything right in every way, and should have no regrets. Enjoy the love that surrounds you - you deserve it.
    An admiring fan in Texas

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  6. Hello Julie, you don't know me. My name is Zoe. I've only had the joy of meeting you quickly at a dance recital for my sister Willow and your daughter. I am Melissa Haskins oldest daughter, Eden and Willows sister. Though I don't share the lines of blood relation, we are joined by the love of the heart. This is my family. Even with only knowing you through the beauty of your writing and the lovely words my mother Melissa speaks of you, i've been given another appreciation to this thing called "life". At the age of 33, I personaly have a sensitive heart of a 5 year old, and lived in fear of most things my entire life. Today I'm not afraid. I feel like I owe that to you.
    All my love to you & your family...and thank you.
    Zoe

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  7. My prayers are with you right now as you teach us all the meaning of strength.

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  8. julieta
    I am cherishing our moments with salts and sugar scrubs and nail polish and girls and talks. When I am hanging up the phone with my mom she often says "peace in the valley". I hope you are finding peace in your valley. kisses
    jamon

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  9. Julie-your peace, bravery and determination are amazing--a true leo=) We will soak in your spirit when the pain goes away, with every rain drop, vegetable we eat from the garden, and breath we take. You have touched so many people in such a short time--you will live on in all of us. Thank you for all the words of wisdom over the years, your help with Emmett, your friendship, and the constant creative energy you have brought to our lives. We love you and cannot wait to see/meet you again whether in some other form or some other life. love always, erica

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  10. Love to you and your family, Julie. We're sending all our good thoughts to you.

    love,
    susan

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  11. Julie,
    Thank you for your words and your strength and your fight. You are completely amazing to me. I think about you everyday from as close as across town. I named my newborn son, Julian and I'd like to think it was after you. Even if it wasn't, now it makes good sense. Both of you are courageous and determined. You will always be in my heart as my old friend Julie who I had good times with. Thank you for that, too.
    Stay tough and courageous and beautiful.
    My best, love always,
    Bettina

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  12. Julie,
    We love you so much! You have been such an inspiration to everyone who has ever known you. You will forever be in our hearts! Thank you for fighting so hard. Thank you for being an amazing friend and support in the years we've known each other. We will know you are with us everytime we are with Luka. Thank you.
    All our love,
    Becky, Frank and Zoey

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  13. Julie,
    Thank you for sharing a part of yourself with me (and allowing me to "meet" you) via this amazing blog. I think (and hope) I will never be the same. I am so inspired by your strength and grace.
    You are in my prayers,
    Trisha

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  14. Each invisible prayer is like a cloud in the air,
    Tomorrow keeps turnin' around.
    We live and we die, and we know not why,
    but I'll be with you when the deal goes down.
    -Dylan, Modern Times

    Fare thee well, Julie. My deepest thoughts are with you and your family. I wish you peace and joy.

    Jen Dynes

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  15. Julie,

    When Ang told me you wanted to write another entry into your blog, I thought, "God damn, give her strength to do it". And you did it! So beautifully too, of course, because you are a such a force of nature in your own right. You've given us - all of us - such a gift with your writing, as others have said. You are a great teacher, Julie, and a beautiful human being. I will never forget you. You have shared so intimately your struggles and shown us how to meet them that I will never look at my life's struggles the same way.

    I love you dearly,
    Renee

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  16. i love you and i am proud to be your friend and even prouder that you call me one.

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  17. Julie,
    I am so sorry that you have to go through all of this. You are so strong and brave and such a shining example to your daughter and to us, your friends. I wish I could be there to hang out with you the way we did at the Highlander pool so many summers ago. My thoughts and prayers are with you and I hope that the pain goes away soon. Stay strong.
    Tricia Govin Casper

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  18. Julie, you have made such a difference to so many of us hanging on to your every word out here making us feel like we are a part of your journey and we have been.

    You are an amazing woman and we are all better for having known you and laughed with you and grown up with you as an integral part of our lives. You know more than anyone that our family will keep laughing, your legacy and stories about you will grow supremely large and exaggerated, and we will be strong & there for Scott, Luka, your mom & dad, Angie, Kevin and Joe.

    I love you and wish you peace, and an eternity of pain-free side-splitting laughter.

    Cousin Ann (And, who the heck is Ellen from Texas! Glad the state of Texas is big enough for the both of us!!)

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  19. Dear Julie, you write the most beautiful words. Andrea sent me your blog several months ago, and I have been reading ever since. Mostly I read and then close my eyes and send the most positive thoughts possible. I was in Fort Collins a month ago and had memories stuck in my mind of you and Angie laughing and fighting, you playing basketball, and watching party of five.
    My love to you.
    Megan

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  20. Tonight my prayer is for endless belly laughs and pretty music in the ditance.

    I love you Julie.

    Jenny

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  21. Julie, thank you for this post and for all your words. Your writing and photographs are so beautiful and such a gift to us. I'm wishing you margaritas and hot fudge sundaes, laughter and pretty music, and all the sweetest things...

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  22. A friend of mine referred me to your blog. I've had some rough experiences with cancer in my family, and I'm going into nursing as a result. Just wanted you to know a little about me, a stranger who likes to read what you write. I hope you don't mind that I follow your blog. I am hooked - you definitely have your wits!

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  23. Hi Julie, I don't know you either but you've touched my life. I'd like to share with you something that I think about on occasion in the hopes that it will give you some comfort.

    When we are born, we come kicking and screaming into this world because we are so used to our mom's safe and secure womb, right? I think that we are afraid to move on from this life for the same reason. We feel safe and secure here and it's what we know. What's next though, could be better than we've ever imagined. Just like being born again in a way.

    I found your blog when I received my own cervical cancer diagnosis. You've helped me and don't even know it :-) I'm wishing you and your family the very, very best. You are truly special and one of a kind.

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  24. Another person who doesn't know you personally. I have been reading compulsively and regularly checking back for updates in the comments section. The post about summer and swimming really hit me. I have a pool less than a mile from my house and, despite having a summer pass, I've been avoiding going b/c I'm usually the slowest swimmer there. But I went today and I'm going to keep going and I'm going to be thinking of you.

    Love from Ann Arbor, MI

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  25. Our hearts are breaking, but our love is growing to fill in the cracks. Your amazing spirit has touched us in ways we will never forget and the love we have gained will go on giving joy forever.

    We love you Julie!
    xo Emily and Wendy

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  26. Julie,

    I've known you a long time, and Scott even longer. You are wonderful. You are beautiful. Your courage and truth are amazing and your family and friends are a testament to your unwavering huge heart. Our family's prayers.

    Hyland

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  27. "FIVE HUNDRED TWENTY-FIVE THOUSAND SIX HUNDRED MINUTES..."
    RENT

    Julie, this song keeps going through my head just about everytime you cross my mind...

    well that and the sound track to Annie too.

    At one point when I was upstairs hanging out with the girls, Luka put on Annie for Will to teach her the songs and started singing at the TOP OF HER LUNGS..."It's A Hard Knock Life"...I wasn't thinking of it in that moment but now if feels too ironic that she was singing that particular song...they just sounded like sweet, little angel babies at the time...but...

    I'm sorry this all still SUCKS!

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  28. Praying for you and your loved ones this weekend... from a friend of CC's who lost a close friend to breast cancer this past fall

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  29. Hi Julie, Abby G here... I just wanted to make sure you know that I have been thinking about you and Luka and Scott CONSTANTLY and sending you all the good vibes I can manage, and then some. I am excited to start working with Luka on her music again, and will help her find her musical voice for as long as she wants/need guidance from me!

    I feel so lucky to know you. Love and peace and love and peace...
    Abby

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  30. What I hope for and try to remember is that there are others who go on and they will fight parallel battles against cruelty, and injustice and indifference. We do what we can for while we can, and then we hope to add our inspiration and expiration [I love how those two words mirror breathing process] to the collective push for life and love and perfection. You have been pushing very hard. That is good.
    Todd

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  31. all I can say is f@$k cancer.

    sending love feeling sad loving kids

    xo your friend of a friend

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  32. Dear Julie, I am constantly sending you thougts of painless rest. I'm glad to have Luka in Wren's class so that I can watch her and help her and love her.

    Sally

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  33. It's been several months since our last visit, but Lilly & I crossed paths with Luka & Scott at Oaks Park yesterday, and the day before, we ran into Kathy picking up coconut water for you. We think of you daily and follow your blog dearly. Jill keeps a Puerto Rico photo of you and along with a photo of my Uncle & I in our altar midway up the stairs. My Uncle's cancer journey continues to parallel yours. I'm very sorry that you are both going through this. You share a rare and kind sincerity that deserves far better than these battles with cancer.

    We've met a lot of folks through Lilly, but I'm grateful for the serendipitously enriching moments that we continue to share with your sweet family. Thank you for including us in the holidays with friends... fond memories of the girls running maniacal circles in your house. And a GIANT thank you for helping Lilly through the early cliques in preschool. I've never met a mother so dedicated to teaching kindness and reconciliation between friends. Luka Jane is such a gem - a reflection of you!

    Warm hugs and prayers,

    Vinh

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  34. I have read and re-read every word you have written from our new home in NY. My heart has swelled and broken simultaneously. I will carry the inspiration and courage you have shared in your beautiful writing and photographs and know that it can only make me a better person. I hug my beautiful Harper a little harder every day and Chris and I send you, Scott and Luka our love.

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