My Crappy Pancreas

April 4, 2012

A New Path

Filed under: Uncategorized — marisaandscott @ 9:57 pm

Marisa says: With the last couple weeks behind us, I find that I am finally at a spot where I can post an update. Frankly, it’s been a bit hectic around here, but not in a bad way. And a new routine is slowly getting established.

Scott finished the round of radiation, in an attempt to make his back more comfortable. While the initial results were mixed, with some additional time behind us, it seems to have helped. Actually, the radiation fatigue ended up being a bigger issue, especially piled onto the cancer fatigue, but it seems that Scott is finally beyond that…at least the first one.

We are now working with a hospice team. What great people! While this may seem like bad news to some, hospice is actually a wonderful thing, as their goal is to help you live your life in the way that you want. I know this has been a hard thing for Scott to get his head around, as he is a fighter and wants to keep fighting. Working with the hospice team doesn’t preclude our ability to pursue a new treatment in the future, if one were to come up. Since Scott is not currently able to pursue oncological treatment, it provides us with good medical support, pain management and help for navigating the current waters. It means we are working to maximize the quality of time over quantity. And as I have told him, it means that we are still fighting, just in a different way.

Scott had his first paracentesis (auto-correct says “parade thesis”) recently. This is where his abdomen is tapped to drain fluid that has accumulated in there (ascites). They drained 1.5 liters, which made him more comfortable. We will monitor the level and may need to do this again, depending on whether meds can keep up with the ascites or not.

His weight is relatively stable, fluid notwithstanding, which is a good thing. Eating is a challenge, as his appetite is rather depressed. He tends to eat at least one small meal a day, and I keep a variety of snacks around for other times. Fortunately, friends and family have kept him well supplied in gluten free treats, especially not one but two gluten free 7-Up cakes. We have also had a steady stream of visitors, which is now winding down. Their presence has allowed me to get to the office from time to time, and ensure that Scott has company in case he needs anything. I am very thankful for those who have made and continue to make time for Scott, be it for walks in the park, hanging out watching tv or for dinner or conversation with friends. It would be very easy for people to pull away, but instead, our village has gripped us even tighter.

The boys continue to thrive, even in the midst of all of this. We continue to be honest with them about where things are, so they too can navigate the waters ahead.

So that’s where it is right now. I’ve got more to say, but will save the rest for another time. I want to get this update out.

Keep those prayers coming! They are always much appreciated.

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25 Comments »

  1. Much love and many prayers are headed your direction, Marisa and Scott. I am glad you have such a good support system. Wish I was closer and able to lighten your load in some way, if there is anything I can do remotely just say the word. Take care!! -Cara

    Comment by Cara — April 4, 2012 @ 10:03 pm | Reply

  2. Hi Marisa — I was glad to see your post, as I was actually just thinking of you today and wondering how things were going. Hospice is wonderful; I’m glad you are taking advantage of it. Tom’s birthday was Sunday so that was a tough day, but all is good; I’ll be off to see my kids and grandkids up north for the weekend. Know that you are in my thoughts and my heart is with you.

    Comment by Minda Heidenreich — April 4, 2012 @ 10:20 pm | Reply

  3. I’m praying for Scott as well as the rest of you! I love you all.

    Comment by Cori Goins — April 4, 2012 @ 11:44 pm | Reply

  4. Thanks for the update. I only had chance to speak when I saw you last. Wishing you a good Easter, and I’ll keep praying BIG for both of you and the boys.

    Comment by Paulette heath — April 5, 2012 @ 6:01 am | Reply

  5. In this season of hope and renewal I wish these for all of you. Big prayers coming your way, BIG TIME.

    Comment by Barbara Lore — April 5, 2012 @ 7:00 am | Reply

  6. Dear Marisa and Scott,

    My prayer for you is that you both continue to find delight in each other and in your sons, that you awaken each day with gratitude for the day and for the life it brings, and that your strength continues in its wonderful work of bringing strength to all of us.

    Comment by Mike Abram — April 5, 2012 @ 9:19 am | Reply

  7. Remarkable that this update comes during a season with themes of darkness AND light, of slavery AND freedom. Yes, the path is new, but the journey is not. “Life is a journey, not a destination.” (Ralph Waldo Emerson) You are so alive and present to your journey! Blessings. Thank you for sharing with us and for allowing your village to embrace you. Big prayers and much love continue to come your way.

    Comment by Dalinda — April 5, 2012 @ 10:18 am | Reply

  8. Dear Marisa and Scott,You and your family have been in my prayers for some time but I have not written in this comment section for a while.. My son David has lost a courageous yearlong battle with this horrible disease of pancreatic cancer.I and our family are heartbroken. He was only fourty four years old. We intend to continue David’s fight with our support of pancreatic cancer research so that some day there may be much better outcomes for those who suffer with this illness. I will always pray Big for you. Love from Barbara Wolfe (David’s Mom)

    Comment by Barbara Wolfe — April 5, 2012 @ 10:34 am | Reply

  9. Very good to hear a follow up from your last post. We are keeping you allin our thoughts and prayers. And i miss you!!!!

    Comment by Mary Jo — April 5, 2012 @ 12:35 pm | Reply

  10. Scott, Marissa and boys,

    The Lee Family is thinking of you all and praying for time and healing. I am not sure if you realise the impact your Blog has had on so many people. Many family’s who are fighting this disease along with you have connected through your postings. The information you share is invaluable and brings peace to many of us in this fight. We are all together in this, our own PC family. Thank you for sharing your story with us. Praying BIG!!!

    Paige, Steve, Cole, Margaret and Conner Lee

    Comment by Paige Lee — April 5, 2012 @ 12:56 pm | Reply

  11. Dear MarisaandScott…

    You and Scott are amazing as you blaze this difficult trail that so many of us share with you. I read your words and I know how impossible it is to write down your day-to-day fight…emotionally, physically and spiritually. Seeing others take the necessary steps, helps us to know we will be able to do the same when needed. You are loved and so many are PRAYING BIG, because prayer is the language of the spirit that connects us all.

    “Embrace the Day”

    Love to you all…Jane from Michigan

    Comment by Jane Cruse — April 5, 2012 @ 1:41 pm | Reply

  12. The Lindley Family (Atlanta) continues to Pray Big for Scott and his spectacular family. We love you all!
    Oz

    Comment by Oz Lindley — April 6, 2012 @ 1:04 pm | Reply

  13. Every time I read your posts, I think of how lucky you all are to have each other as a most amazing family. What strong, beautiful people you are, You all are in my thoughts so often. Love and strength and big hugs to you all!
    Alicia

    Comment by Alicia Zambelli — April 6, 2012 @ 6:50 pm | Reply

  14. As usual, it sounds like you guys have everything under control and are making the best possible decisions for all of you. So glad to hear that hospice is helping to keep Scott comfortable, and that you are keeping all options open. Wishing you a happy holiday and continued enjoyment of your beautiful family!

    Audrey

    Comment by Audrey Ettinger — April 8, 2012 @ 3:12 pm | Reply

  15. Dear Scott and Marisa,
    The last time I saw you was at an Albion College Homecoming a couple of years ago. I was with my daughters, and we spent quite a bit of time talking to the two of you. Later we all remarked about what a great family you had and how impressed we were with Scott’s decision to be a stay-at-home dad.
    I want you to know how much Pete thought of you, Scott. I even remember how excited he was when you committed to Albion all those years ago from Grand Rapids.
    You are in our family’s thoughts and prayers.
    Becky Schmidt

    Comment by Becky Schmidt — April 10, 2012 @ 11:31 am | Reply

  16. Dear Scott and Marissa and Boys,
    Keep your heads up and know many are thinking of you and praying for you. I check for updates and pray for good things to come your way. Your courage goes beyond words.
    Jon Baarda and Family

    Comment by Jon Baarda — April 10, 2012 @ 2:56 pm | Reply

  17. Dear Scott and Marissa,
    I think of you often. You are the bravest family I know. My thoughts and prayers are with you always.
    Marcy

    Comment by Marcy Wood — April 20, 2012 @ 9:07 am | Reply

  18. I have recently found your blog while searching the internet for information on this brutal disease – my own husband was diagnosed with inoperable pancreatic cancer a year and a half ago. He is using all sorts of complementary treatments as well as quite new chemo regimes – and I wonder whether you, or any of your readers, would be interested in looking into these. He has documented it all on http://fightingpancreaticcancer.wordpress.com Your blog is so brave, and so ‘natural’ and warm and embracing and inspirational – as a wife who knows exactly what you are going through I would like to thank you for sharing your thoughts and experiences, and giving so many people strength. From Israel we send you warm wishes for peace and good times and miracles and dreams coming true. Pam

    Comment by Anonymous — April 22, 2012 @ 9:54 am | Reply

  19. Hey Scott and Marisa. Still keeping you in my thoughts, my heart, and my constant prayers for you. Miss you much. Love, MJ

    Comment by Mary Jo — April 26, 2012 @ 8:50 pm | Reply

  20. Always keeping each and every one of you in my heart and prayers, and hoping that Scott will be kept comfortable.

    Comment by Brenda Johnson — April 28, 2012 @ 1:07 am | Reply

  21. Keeping your family in my thoughts. Hang in there big fella…

    Comment by Doug Smith — April 28, 2012 @ 4:23 pm | Reply

  22. Scott and Marisa,

    I have followed your post for sometime now. I am a 51 year old wife and mother of three who was diagnosed with pancreatic cancer 22 months ago. Like Scott the news came out of the blue as I was healthy and with no family history. I have had radiation and several different chemotherapy combinations. I am currently recieving Folfox.
    My thoughts and prayers are with you and your family, thanks for your blog. I have a wonderful support network but stiil often feel alone in that no one truly understands. I am sorry that you DO understands but you have also brought me sense of comfort.

    Christine Kircher
    Iowa

    Comment by Christine Kircher — April 29, 2012 @ 12:16 pm | Reply

  23. My thoughts and prayers continue for Scott and you and the boys.. Although we never met in person.. I still feel as though there is some sort of bond as you made such an impact in my life through raising Ike… I believe too that he watches over you and the family as well… as I know he never forgot anyone who showed him kindness and love. I think of you often and how blessed I was through your selfless gift. I truly believe that there may be more good to come for you. Take heart and bless you for sharing all for the world to see and learn from.

    Comment by Erica Stark — May 1, 2012 @ 9:37 am | Reply

  24. My thoughts and prayers are with all of you during this difficult time. I’m so glad Marisa gave me this site address as I am so inspired by your strength and courage. God bless you all!

    Comment by Jane Nohr — May 2, 2012 @ 8:10 am | Reply

  25. May you know peace, strength, and comfort. May you feel the many prayers that enfold you. You are indeed being held in infinite love. Loving thoughts and heart hugs to all of you.

    Comment by Dalinda — May 7, 2012 @ 9:54 pm | Reply


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