My Crappy Pancreas

March 12, 2012

Unless…

Filed under: Uncategorized — marisaandscott @ 5:54 pm

Marisa says: Yes, I know you’ve been wondering. At long last, we were able to see The Lorax. Thanks to Amy for getting us tickets for the preview screening and a box of swag, to Greg and the folks at Universal who sent t-shirts and fun stuff for the kids (mustaches!), and to Jon who sent the boys 4 ft Lorax fatheads. We loved the movie and were so thrilled to get to see it. It meant a lot to reach this milestone.

20120312-085021.jpg

Unfortunately, in the last week, we have learned that we need to set our sights much closer for the next milestone. Before going to Boston, Scott had a PET scan. Upon our return, we learned that the scan showed two new mets, one in L2 in his spine and one in his left hip and overall progression of the cancer, consistent with the fact that he has not been on chemo while we evaluate the trials and look for options. We met with the radiation oncologist last Monday and started treatment on Tuesday, with the idea of addressing the back pain Scott has been experiencing. Also on Tuesday, Scott went for his regularly scheduled stent change. After the procedure, the doctor told me that it was the most difficult procedure he had performed…that Scott’s insides had changed dramatically since the last procedure in December, or more concerning, even since the stomach surgery a month ago.

On Wednesday, we saw the oncologist who reviewed all the recent information with us and told Scott that, given his performance status, he could not have chemo that day. At this point, we are evaluating whether Scott’s status will improve so that he can have chemo again.

This cancer, this nasty, thieving cancer. It has taken advantage of the chemo break to take off in a way it never has before, and now we may be at the point where we cannot beat it back. Almost two years since diagnosis and here we are, changing the fight and evaluating whether to turn our energies to comfort and peace.

But, Boston (Dana Farber) went really well. They had some good ideas to offer Scott and others who have moved beyond the standard PC treatments. However, it doesn’t look like we will be availing ourselves of those at this time. At present, Scott is in bed for most of the day and isn’t eating much. His weight has dropped quite a bit in the last month, whether from the surgery and it’s aftermath or the cancer, it doesn’t matter. The weight is lost and it may not come back.

Instead, we are working to control pain right now, trying to make him more comfortable. Trying to walk in the park once a day, to enjoy the sunshine, the birds chirping and the flowers blooming, as we transition into Spring. Hoping to spend time together as a family, and still finding fun things to do…when we can, when he can. Knowing his strength, Scott may rally yet. These are hard decisions that no one wants to have to make. Hard, hard decisions.

Pray for time. Pray for peace. Pray for a clear road forward. Pray BIG.

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51 Comments »

  1. May today be all you need it to be. May the peace of god and the freshness of the Holy Spirit rest in your thougts, rule in your dreams tonight, and conquer all your fears. May God manifest himself today in ways you have never experienced before. May your joys be fulfilled, your dreams be closer, and your prayers be answered. I pray that faith enters a new height and depth for you. I pray for peace, healing, health, happiness, prosperity, joy, and true and undying Love for God. That is my prayer for all of you.

    Comment by Barbara Lore — March 12, 2012 @ 6:09 pm | Reply

  2. So sorry your path is getting tougher. I have been through almost 5 years of lung cancer with my beloved husband and then 5 months of pancreatic cancer with my special uncle. I understand the horrible nature of this beast. My prayers will continue for your entire family.

    Comment by Cathy Harmon — March 12, 2012 @ 6:12 pm | Reply

  3. I wondered why DC’s having such warm weather in March… Silly of me to question God’s plan. Perhaps Spring is early so that together, (even 400 miles apart), we can all appreciate birds chirping, flowers blooming… Everytime my face hits the sun I’ll picture you guys together somewhere walking in the park… And I’ll pray… BIG!

    Comment by Celeste — March 12, 2012 @ 6:17 pm | Reply

  4. I am so, so sorry for the discouraging news. Rotten, not fair, and horrible. I hope for pain control for Scott, and hope for beautiful moments each day for you all as a family, and more time. We think of you every day, and send you all so much love. Big internet hugs to you all!!

    Comment by Alicia Zambelli — March 12, 2012 @ 6:22 pm | Reply

  5. Marissa,
    You are in my thoughts and prayers. I have been in your shoes and it is so hard. You seem to be incredibly strong though, and have a wonderful faith and support system. All those will help you and your loved ones in the days ahead.
    Be kind to yourself.
    Jane

    Comment by Jane Adinolfi — March 12, 2012 @ 6:56 pm | Reply

  6. You are both in our hearts and we Pray Big all the time. You are touching the lives of so many and connecting people through your journey…more than you know. Look at how much you have done and how much hope you have given. Your milestones have become ours, your strength ours, your Hope…ours, and we share prayers too. One day at a time…one breath at a time. God is carrying you with His strength and love, with everyone He sends to you. You are both not alone and you have connected us so we don’t feel alone either. Love is always the answer! You are both Amazing people.

    “Embrace the Day”…hugs, Jane (MI)

    Comment by Jane Cruse — March 12, 2012 @ 8:19 pm | Reply

  7. Working really hard to pray big! Here’s to walks in the park, and beautiful days, and time enough.

    Much love,

    Kim

    Comment by Kim Karman Dobson — March 12, 2012 @ 8:40 pm | Reply

  8. Thinking of you during this time of uncertainty. The nice weather has arrived just in time for spring break, and I hope you find the time to do what matters most. Scott is one of the most courageous men, and I will be praying big as he fights this next leg of this journey. So glad you got to see the Lorax!

    Comment by Cindi Gibbs — March 12, 2012 @ 8:47 pm | Reply

  9. Scott, my thoughts and prayers are with you. You are one of the strongest men I have ever met and if anyone can beat this it is you!! I know that you have many more games of “double king/king of avoidance” left, so stay strong and I will be thinking of you and I know that all will be fine for you and your family. Be good, Gordon Cady

    Comment by Gordon Cady — March 12, 2012 @ 8:49 pm | Reply

  10. I am praying big for all of you!!! Hugs and love from Wisconsin. xoxo

    Comment by Kim — March 12, 2012 @ 9:05 pm | Reply

  11. We are praying BIG for all of you. Sending strength, comfort, and peace to all 4 of you. Keep living each day…each moment…to the fullest. Let us know if there is anything we can do for you.

    Comment by Kelly — March 12, 2012 @ 9:51 pm | Reply

  12. Scott,
    I haven’t seen you in years. I remember a fun-loving guy who was tough and strong. A football player and a friend. I am sorry to hear about this terrible disease and what it’s doing to your body. Keep your mind focused on getting better. You can do it!
    Be Strong Old Friend!

    Liz Ravitch (Walker)

    Comment by Liz Walker (Ravitch) — March 12, 2012 @ 10:13 pm | Reply

  13. Always praying and will continue to pray as big as possible.

    Comment by Hank Wineman — March 12, 2012 @ 10:24 pm | Reply

  14. God bless you and your family on this journey…I have been on the same journey with my husband
    last year…….live each day, fight the good fight, LOVE each other endlessly and know that you are loved and admired by many….know that no matter what, the Good Lord will continue to hold all of you in HIS hands……nobody nor ANY disease can ever take away your love for one another….Kathy Nobles….Horseshoe Bay, TX

    Comment by Kathy Nobles — March 12, 2012 @ 11:34 pm | Reply

  15. Praying big for a big rally, for time, for peace, for clarity, for strength in all of its forms. Hoping that it is in God’s plan to grant them all.

    (So happy to see the smiles of delight on the boys faces!)

    Comment by Gillian Johnson — March 12, 2012 @ 11:35 pm | Reply

  16. My prayers are with you. Be strong and couragous and know that the Lord is with you wherever you go. We all are safe in His love. Scot and your whole family have been an inspiration to me. The photo and the story behind it speak volumes about who you are. Be blessed.

    Comment by John Wolfmeyer — March 13, 2012 @ 7:36 am | Reply

  17. I remember Scott’s “SNAP” post and am so happy that you all were able to enjoy the Lorax film together. I will maintain my prayers for you all, but in the meantime keep enjoying those walks in the park and the sunshine. Again, thank you for sharing.

    Comment by Jennifer Roberts — March 13, 2012 @ 10:04 am | Reply

  18. Marisa — You know I have been where you are. I truly know how terribly hard and heartbreaking it is, and my heart goes out to you and your family. All you can do is take each moment as it comes, and you’ve done a wonderful job of that.

    Comment by Minda Heidenreich — March 13, 2012 @ 10:31 am | Reply

  19. My heart is broken for you and Scott and the boys. I’ll keep praying – there is always hope.

    Comment by Clara silver — March 13, 2012 @ 11:41 am | Reply

  20. Scott, Marisa and Family,

    Where do I begin? Beth and I will continue to PRAY BIG for you each and every moment. I’m not sure there are words to describe the respect I have for you and the person you are. Your passion for life and your commitment stand out to me and I refer to you often still with my three boys and my daughter on the hard work you portrayed on the field, but more importantly the passion you have for life and all that it brings. I pray that the path will open in front of you and that God will provide clarity and peace for all those touch your life each moment of every day (family, friends, doctors, strangers). There are impressions that special people leave on you as you go through life. Scott – you are one of those people and I count myself blessed that God put you in my life. I can only imagine how many other “impressions” you have made in others lives. I am faithful that your path will be clear, that you and your family will be strong and that God will bless you with peace as you take each step. “He has showed you, oh man, what is good. And what does the Lord require of you? To act justly, and to love mercy and to walk humbly with your God.” Micah 6:8

    VTL
    Scott (FUAP)

    Comment by Scott McFarland — March 13, 2012 @ 2:35 pm | Reply

  21. Praying BIG for you all, may God give you peace and strength in the days to come.

    Comment by Tammy Jones — March 13, 2012 @ 3:24 pm | Reply

  22. Dear Marisa
    I have been following your blog for some months, having stumbled on it while investigating folfirinox for my wife Jeanne, who has had pc for two years now. We have recently run out of treatment options, and after so many twists and turns have focused on comfort care at home, and Jeanne is in her final days, surrounded by family. I have not commented on your blog till now, but I want to let you know how much I admire the way you have carried yourself through this ordeal that I understand all too well. I wish you ease of mind and comfort of heart, and I hope for peace and calm for Scott and for all your family.
    All Best Wishes, Mark McSweeney

    Comment by t — March 13, 2012 @ 4:23 pm | Reply

  23. Wow what a load for you all to handle! So sorry to hear that the dang disease has progressed!! What a blessing to have met Scott and hear his testiment. You are so strong and such a faithful Christian — what an awesome thing you are teaching your sweet boys! God is with you every step of the way and we pray that you have the knowledge to make the right decisions and most of all — enjoy the walks, enjoy the hugs and smiles from your boys and Marissa and know there are a lot of us PRAYING BIG! ~ SFUMC Monday Night Bible Study

    Comment by Amy — March 13, 2012 @ 5:12 pm | Reply

  24. Dear Marisa and Scott,

    We are praying BIG, because you are fighting so very hard and we all know that you will NEVER quit. If that cancer wants to get through, it’s going to have to fight a LOT harder.

    Comment by Mike Abram — March 13, 2012 @ 8:43 pm | Reply

  25. We continue to pray for Scott. We’re praying that God heals Scott and restores his health.
    May the Lord comfort you and give Scott, you, and your boys peace which surpasses all understanding.

    Rina Harris

    Comment by Rina — March 14, 2012 @ 11:17 am | Reply

  26. I’m so sorry to hear that you have had such discouraging news. I know that you will continue to make the best possible decisions for all of you, whatever the options are. Thinking of all of you and wishing you peace and strength.

    Audrey

    Comment by Audrey Ettinger — March 14, 2012 @ 9:17 pm | Reply

  27. So happy to see Lorax pics. I was inspired by Scott’s posting when he first heard about the Lorax movie. Thank you for your strength in sharing .
    Big pray works. My family is praying big for you and your family.

    God is our refuge and strength, A very present help in trouble.
    -Psalms 46:1 (NASB)

    Comment by Dinika — March 15, 2012 @ 8:02 am | Reply

  28. Marisa & Scott- your courage continues to inspire me beyond. Yes, enjoy this early spring, each moment, each space you create with your family. Always praying big and sending more light and love than I can explain. Love you both.

    Comment by Kenya & Carl Johnson — March 15, 2012 @ 8:56 am | Reply

  29. Every smile, touch, milestone (no matter how small), it all matters. Thank you for continuing to share with us this very personal journey. We hope you continue to feel all of our love and those BIG prayers. So glad that you were able to make it to The Lorax and cannot believe how big the boys are getting!! Love, Nse Witherspoon and Crew

    Comment by Nse Witherspoon — March 15, 2012 @ 4:15 pm | Reply

  30. thinking of you all and surrounding you with love and peace…..

    Comment by Kelly DePerro Marinaro — March 15, 2012 @ 10:32 pm | Reply

  31. Marisa and Scott,

    As I watched the Lorax movie myself I thought of all of you, and how much I would enjoy discussing the movie with you in Charlotte. Given the Overton strep throat wrinkle and change in travel plans, we haven’t had that conversation yet, but that’s ok. The picture speaks volumes, and brought such a smile to my face.

    I just read that August 31 the Trap post again, and I’m smiling even more broadly now. Smiling, of course, because you all did indeed savor this milestone together. But smiling, too, because just as Scott dug out of that “time trap,” he’s done it over and over and over with other “time traps,” day after day, month after month, with all the twists and turns and hills and valleys of the journey, fighting the way forward and living, loving, being joyful, in the present. Whether in the Grand Canyon, DC, or USVI, in town at Cirque du Soleil or a chess tournament, stepping back in time for the Second Continental Congress, or in quieter moments at home, all four of you keep doing it, living, truly experiencing life, loving, cherishing each other in the present, and touching so many others along the way. You have been, are now, and will continue to be supported by the power of God, and the love, hope, and faith you share within your family and with a wide community praying BIG daily.

    I love you both and the boys and continue to be so grateful for a friendship that has deeply enriched my life and continues to do so in so many ways.

    Leslie

    Comment by Leslie Overton — March 15, 2012 @ 11:08 pm | Reply

  32. Oh my… so glad you got to reach this milestone. Know that I too continue to pray big and for Scott to find the strength to continue to rally on. I am also glad you are able to enjoy the smaller times… those too are milestones. And I know that you are all strong enough, even though I don’t know you well to meet each new challenge and decide how best to tackle it.

    I am certain that Ike is watching over you as well… take heart in that. His labbie heart had plenty of love for all he knew… and those he knew best he always watches over. I believe that. Marisa, you and I am sure Scott too, are capable of many many things. Cherish the times you will have to enjoy together… no matter how small.

    If there is anything you need, even just someone to listen… reach out. I still feel such a special connection even though Ike is at the Bridge because he taught me so much about myself and I have you to thank for giving him such a grand start. That is why I know you are strong and capable.

    Comment by Erica Stark — March 16, 2012 @ 10:07 am | Reply

  33. Yesterday, I had the chance to tour Karmanos Cancer Institute’s research labs and hospital here in Detroit with my board members of Embrace the Day Foundation. I am empowered to move forward and encouraged by the cutting edge research that is coming, although not soon enough. It is frustrating how long good research takes to come to the patient. I am even more aware how many years and dollars it takes to finally get good drugs to the patients. Aside from the frustration, there is Hope…for all humanity and we are a part of that. I am honored at the battle that Scott, my husband, Michael, and all others get up each day and do. Each person makes a difference and each journey counts for something. This experience will be a part of mankind.

    I wish for you beautiful walks and timeless moments filled with moments that endure lifetimes!! I am in awe of the beauty of the words written to you & Scott, holding you up in love and prayer. Just beautiful!!

    I can’t say enough that you have both been a Rock for so many and your journey has connected so many!! It is a movement!!

    ~hugs~…Jane from Michigan

    Comment by Jane Cruse — March 16, 2012 @ 11:40 am | Reply

  34. People like me, from your distant past are praying for you and your family.

    Comment by Tami Brown — March 18, 2012 @ 9:34 pm | Reply

  35. Marissa,
    Thank you so much for your post. Unfortunately our paths with pancreatic cancer are following such a similar pattern. This past week my husband was told that the tumor count is going up again (after over a year of decreasing numbers), while his weight is decreasing. :( So, there are no more options for treatment. Same problems with infections also, but we are positive and taking this journey day to day. My kids are tough cookies and really hanging in there for their Dad, and your posts do a world of good for me, just knowing about your journey and being able to relate so closely to it. Thank you… I’ll keep praying big for you and Scott and the kids… Peace, love and light to you all… Becky from Los Angeles

    Comment by Becky Saltoon — March 18, 2012 @ 11:01 pm | Reply

  36. Scott and Marissa:

    May your faith and love for each other grow every moment and provide comfort. God Bless and know all of us are PRAYING BIG!

    Michael

    Comment by Michael Murray — March 18, 2012 @ 11:08 pm | Reply

  37. Scott and I are Words with friends buddies, and have been for a while. Not exactly an intimate nor long-term relationship. And yet, from the beginning, something about his energy, the way we played together, and then learning about his story– i have been reading the blogs, saying nothing, because i could always text with scott on his next Words move. But he has not been playing, for obvious reason. So i just want to say that i wish the best for you and your family; i’m pleased you saw the Lorax, i had indeed wondered, and i hope for you everything you all hope for yourselves. It is a pleasure to meet someone through technology and yet feel the energy, the softness coming through. My life has been enriched by my enounter with Scott, and i hope he will be playing Word again soon. thank you. Bev Edelman

    Comment by bev — March 19, 2012 @ 12:23 pm | Reply

  38. So sorry to hear your most recent news, Marisa & Scott! I monitor clinical trials of oncology drugs, and currently work on a first-line metastatic pancreatic adenocarcinoma study. I think of folks like Scott and my dear friend Jeanne who lost her battle with this beast just five months after diagnosis. You are my motivation to keep working at 67, as the travel required is grueling at any age. Your blog is such a generous gift to others. I have shared the link with so many people. May you find strength and peace in the days to come. I pray BIG for you and so many others.

    Comment by Alison McConnell Spransy — March 19, 2012 @ 6:18 pm | Reply

  39. My heart breaks for you as I read your latest email. I am praying for you from Iowa and that you are able to enjoy this time. Having gone throught this with my Dad last year, my best advise is to stay strong in the Lord and He will continue to give you more strength and peace than you could ever ask or imagine!!

    Comment by Coby — March 21, 2012 @ 10:31 am | Reply

  40. Marisa and Scott,
    I continue to pray BIG for you and your boys. What an amazing family you are and a source of inspiration for so many. I feel blessed to be a witness to so much love and grace. I pray that you all enjoy each day together and that you have many more days.

    Comment by Sheryl Stoessel Suarez — March 21, 2012 @ 9:52 pm | Reply

  41. I continue to pray big for you and your amazing family. Call me if you need to Marissa. I think of you guys every day.
    Katherine

    Comment by anon007 — March 22, 2012 @ 8:10 am | Reply

  42. Marisa and Scott,

    It was good to see you guys last month. We keep you in our thoughts..always…

    Love,
    Sun

    Comment by Sun Mullins — March 22, 2012 @ 1:57 pm | Reply

  43. Hutchinson Center scientists break through pancreas cancer treatment barrier

    Research study reports extending survival in mice by 70 percent; initial studies in humans are under way Dr. Sunil Hingorani SEATTLE – March 19, 2012 – Pancreas cancer tumors spread quickly and are notoriously resistant to treatment, making them among the deadliest of malignancies. Their resistance to chemotherapy stems in part from a unique biological barrier the tumor builds around itself. Now scientists at Fred Hutchinson Cancer Research Center have found a way to break through that defense, and their research represents a potential breakthrough in the treatment of pancreas cancer. In a paper to be published in the March 20 issue of Cancer Cell, senior author Sunil Hingorani, M.D., Ph.D., an associate member of the Hutchinson Center’s Clinical Research and Public Health Sciences divisions, and colleagues describe the biological mechanisms of how the tumor barrier is formed and detail a newly discovered way to break it down. Their research significantly increased the length of survival in a genetically engineered mouse model of the disease. Early clinical trials in humans are under way at a few sites in the U.S. and Europe, including Seattle Cancer Care Alliance, the Hutchinson Center’s patient treatment arm. Details about the open clinical trial can be found here: http://clinicaltrials.gov/show/NCT01453153

    Sure you heard of this study but felt the need to post it just in case. I continue to PRAY BIG

    Comment by Chris Morris — March 22, 2012 @ 6:54 pm | Reply

  44. Thinking of your family, with love.

    Comment by Karen Zatz — March 23, 2012 @ 11:56 pm | Reply

  45. Scott and Marissa, I am so glad you were able to see the movie and got the fatheads. I continue to pray for Scott. His fight is truly inspiring. Marissa your courage is phenomenal. Know many are thinking of the two of you back here in Grand Rapids.

    Comment by Jon Baarda — March 24, 2012 @ 3:18 am | Reply

  46. Two years battling the disease is really something – I think of you and your family often.
    Praying BIG………..

    Comment by Tim Wyman — March 29, 2012 @ 9:22 pm | Reply

  47. You all are never far from my mind and heart, and always in my prayers. Time, more time. But defintely peace and every moment left in the warmth of loved ones. Jin and I will be passing through N.C. this weekend on Spring Break – I will send prayers and healing thoughts your way.

    Comment by Mary Jo — April 2, 2012 @ 12:57 pm | Reply

  48. Prayers, prayers and more prayers for you all. Thanks for posting the Lorax picture, it was great to see everyone’s smiling faces.

    Comment by Heather Chapman — April 3, 2012 @ 9:24 am | Reply

  49. I too,think about you and your wonderful family often. I continue to be amazed at your and your family’s strength and courage throughout this journey that has been thrust upon all of you. My love and prayers are with you as you continue along . . . so bravely, oh so bravely!! Praying big!! p.s. I still think about Grace and Blackberry. :)

    Comment by Yvette Bell — April 3, 2012 @ 9:28 am | Reply

  50. Still thinking about you and your family, Scott. I have hope that you can enjoy a lot more time with your family. Hope you had a nice Easter. Peace to you and your family.

    Comment by Jen Yared-Chenault — April 12, 2012 @ 11:42 am | Reply

  51. Marisa and family,

    My wife and I both know exactly what you are all going through right now. It just plain SUCKS. We will be praying BIG and you need to stay strong. Let us know if you need anything. John and Deb Bussman

    Comment by John Bussman — April 16, 2012 @ 11:21 am | Reply


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