Monday, May 6, 2013

Update....Slow Recovery...Healing.... Trying to find My New Normal.......

Yes, I know it has been so long, but finally the update.  On February 22nd I had my entire stomach removed along with several lymph nodes and a "scant" section of my esophagus were it attached to my stomach. What can I say - it was a horrible experience that I wouldn't wish on my worst enemy but it was necessary and it is now done! I will never die from this hereditary form of stomach cancer the way 4 of my family members did. I am the lucky one!! I am still having to do tube feeds through the night to ensure I get proper nutrients. I hook up to the machine and the formula goes straight into my small intestine thru a small tube attached to my side. I HATE it for several side effect reasons but also am grateful because it  literally is/has saved my life.  It has been a very slow recovery with many "unexpected" problems. I was hospitalized for a week just before Easter in March for dehydration and an esophageal stricture. I was unable to eat any type of soft food orally and began spitting up any water or liquid I drank. My new connection site ( where they hooked my esophagus up to my lower intestine) developed really bad scar tissue that closed the opening up to about 4mm. Since that time I have had to return to Duke hospital (5hrs away)once a week to have dilation's and stretching to get my esophagus to open up so I can begin to eat real food. This is done as an out patient procedure with a GI and anesthesia team. I am now up to about 12mm and can eat mashed potatoes, soups, and other super squishable foods. The goal is 15-18mm but each time I go in, the scare tissue begins to take over again! Errrr, so frustrating.  I head back for another stretching the end of this week and I meet with my main doctor on the 13th to evaluate this on going problem - I pray no more surgery. I was in the ER just this last Thurs. night for a kidney stone- OMG the pain was intense. I passed it this AM - thank you God! I was told I have a few more in my kidneys but not as large as this one was. This is a result of the surgery, dehydration, etc.  Big sigh............ I am just trying to keep my spirits up these days and be grateful for all the little positive changes. My energy is getting better and I am getting stronger everyday. I am also beginning to adjust to all the weight loss. I miss making my art. I feel very disconnected from it and I can't believe how slow I am moving when I do putz around in the studio. Patience is so difficult for me - the docs tell me "all in due time" 6 months to a year from now, I will be comfortable in my "new normal" I just want control as to what that so called "new normal" is gonna look like!!!! Wow! there it all is. What a negative sounding post! Yuck... but it is my truth and my reality for today. I will get better, I am getting better every day. I am alive and not fighting cancer or undergoing chemo! Thank you God

14 comments:

  1. It doesn't sound negative to me at all. It sounds like COURAGE. STRENGTH. Love you, Lu--am continuing to pray.

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  2. Wow! Thanks for the update Lurena. Glad you can see the positives lurking even when you are still going through so much! And kidney stones on top of everything else! Yikes!
    You, David and the kids continue to be in our prayers.
    Carol

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  3. lurena, i've been thinking about you since i saw your original post. i'm glad to hear that you are on the mend and adjusting to your new normal, even though it seems you have had some pretty harsh set backs. i had surgery in september, and while it was no where near what you went through, my recovery was also painful and i never thought i would feel normal again. but i have. and i do. i hope things continue to get better for you and i know you will be back in the studio in no time, bringing your beautiful dolls to life!! hugs and well wishes from new orleans!!

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  4. patricia gochenourMay 7, 2013 at 3:04 AM

    You are a wonderful, brave woman Lu! I'm sorry for everything you've gone thru but like you said....you will be free from stomach cancer. I miss you....think about you everyday. Stay strong. Love you tons!

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  5. There is no negativity in your post just a tenacious spirit of survival and the strength of will it takes to adapt to these things life throws at you. I really admire you and reading this has certainly put my own little digestive problems into perspective. I need to stop feeling sorry for myself and you are a shinning star on that horizon. You will be back making your amazing dolls before too long but for now just rest and let yourself heal. All the best xxx

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  6. So good to hear from you! I had been wondering how it was going. Sounds like a rough ride that you have been surviving with courage and a positive attitude! I admire you for that courage! Hopefully you will soon be back to making your fantastic dolls.
    Best wishes and prayers for your continued recovery.
    Louise

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  7. Hi,

    My name is Cindy and I don't really know you even though you are on my favorites list and I have admired your dolls for years. You have so much courage, more than I could ever have, I always seem to take the easy way out. I will say a prayer from you and continue to look at your site as there will be new dolls that you will be making. Be proud of yourself, you are alive and your family needs you. God Bless You!

    Cindy

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  8. Lurena, I remember when I was in the middle of a quite nasty health issue, some years ago, when I was laying in the hospital practically unable to lift my own head, a medical person (physio.?) told me to take it one hour at a time, or live one hour at a time. I started doing that and have lived that way now for 20 years and counting. Now I am much better I have not forgotten those words. So I am passing them along to you, art friend. Your art will not leave you. It's just taking a needed rest. Your muses are patiently waiting you and will never forsake you. Thank you so much for sharing your life with us. It is an honour that you do. Hugs, Norma, xo

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  9. Lu, my beautiful and inspiring friend. You are honest and brave, for posting the truth out there. We don't know what you are dealing with during this healing process, but you shed such light on an otherwise scary, unknown, and hidden situation. I hurt for you knowing you are dealing with this but I also know you have such love and support in your life. I pray for you all the time, and I really want to come visit, help out or just listen, love your kiddos, give Dave a break, tell you silly stories and just hang with you. Please let me know your plans for the summer, since we may be out and about and somewhat near your neck of the woods (thanks to Dalyn and her volleyball awesomeness). Would loveLoveLOVE to come for a visit.
    Much love and all positive vibes,
    your forever friend,
    Bean

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  10. Lu, thanks for taking care of yourself. Not only the kids and your husband, but all of us in your family of choice will love the fact that you're on this side of the dirt. So very hard for you, so easy for us to enjoy your gift of yourself . . . Much love and gratitude, Wayne

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  11. continuing to hold you up in positive-ness my sweet Friend ~ SO happy to see you blogging again and in a good mindset...we are all here for you!
    Blessed be!!
    Lori

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  12. Dearest Lu~
    We don't know each other very well but I have been such a fan for the longest time. Your art and dolls are precious and such a gift that you share with all of us. Please continue to stay strong and courageous throughout your recovery. Right now is time for you to rest, heal and be inspired in this quiet down-time for more even incredible characters of art when you are better. You have touched my heart and I send you much love and healing energies.
    Carlin/Polly-Wog Studios

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  13. Soooooo good to hear from you! I have been away myself, fighting my own demons. But the two of us will find our normal and continue to live and thrive. Keep coming back when you feel up to it. I have missed you. :) Kit

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  14. I still like Naked Santa the best...

    Endless love for you, Beautiful.
    Kerri

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