My Crappy Pancreas

May 25, 2012

T+3

Filed under: after — marisaandscott @ 8:43 am

Two whole days have passed now, and now we’re in the third. The hospital bed has been removed from our room. The arrangements are being made for Monday’s memorial service. There are lots and lots of things to do. I guess that is a good thing…keeping busy, keeping distracted on details, rather than on the gaping hole in my chest. I am sad, profoundly so. I feel his loss keenly. I will always miss him. But there are so many other emotions and feelings swirling around, too. I feel peace that he no longer has to fight, relief that he is no longer in pain, and even anticipation for what is yet to come for the boys and me as we forge ahead in this new and different world. The weight of the last two years is peeling away and I don’t know what will come next.

The boys are doing well! They, too, are sad, but children are resilient! Amazingly so! Thankfully, they were with friends on Tuesday evening after school and played until bedtime. Surprisingly, they didn’t ask to call or check in, which is their normal routine when away. They had already given Scott hugs and kisses when they saw him on Monday evening, and knew that based on Scott’s condition at that time, that he could pass away at any time. Death is not a pretty thing, and they needed to remember their dad how he was, not how he looked in his final hours.

On Wednesday morning, I was there to meet the boys. Max, not surprised to see me, asked how dad was doing, and I let them know that their father was gone. There were tears and questions, and more tears. Lots of love and hugs. And then slowly, there was a facing of the day ahead. They wanted to go to school, albeit a bit late, and they began to start their day.

You see, they grasped from the beginning what us adults take a long time to figure out (and some never do). Life is about living! Every day! Every moment! The best way to honor someone who has passed is to live your life. As I said to someone yesterday, Scott would kick my butt, if I was doing anything but that. This is what we have tried to do in the face of the challenges of the last two years. This is what the boys and I will continue to do, as we figure out what it means to be a family of three, instead of four.

So, they went to school. They were a bit nervous – how would people act, what would people say. But, knowing the amazingly supportive environment they are in, I knew it would be okay. Cole didn’t want to miss his Gettysburg Address test or the first day of the Civil War Museum, where he presented his display and shared his research on the Massachusetts 54th. And Max didn’t want to miss his class party. I picked them up a bit early and we went home and hung out. Lots of different questions, many without answers. We played. We laughed. We ate dinner, dad’s favorite Mac and cheese (Smac, how we love you!), and for the first time in a while, I could sit and eat dinner and focus on the kids, instead of running back and forth between them and Scott. They both, summed it up similarly, that while this was a sad day, it was an okay day.

I know there will be many more sad days. I know that the loss that we so keenly feel will continue to bubble up and out in different ways in the days, weeks, months and even years ahead, and I appreciate the wisdom and insight of those that have gone on this path before us. I know that this will indelibly mark all of us – but I have faith that the family the four of us created together has set our compass in the right direction.

People do this. People get through this. People lose spouses. Children lose parents. We are now a part of a different club. And whether or not we want to be members, we are, and we will figure this out together.

And I guess I still feel that the greatest sense I have is the feeling that I have been blessed. Blessed to have had the opportunity to meet and get to know such an amazing soul. Blessed to have married him and had two wonderful children. Blessed to share so many years and experiences as we made our way through life. Blessed to have had two years to share the PC part of the road by his side. Blessed to care for him in his final days. And blessed to be with him as his soul moved on.

I thank all of you who have been and continue to be part of our journey, standing by our sides, whether right next to us or from far away.

So now, what comes next? We’re going to celebrate Scott’s life here in Charlotte on Monday, May 28, Memorial Day at 11am. We’ll gather in Freedom Park on the island where the band shell is to share stories and memories, to listen to music, to pray, to laugh, to cry, to remember. I’m not dressing up – I hope you don’t either. Scott was a casual guy and he’d hate to think of anyone sitting out roasting in the sun in a suit or tie on his behalf. Actually, he probably would a kick out of it it and laugh at you.

Since so many of Scott’s family and friends are in Michigan, the boys and I will also be heading there to celebrate Scott’s life in the coming weeks. I will let you know those details as soon as I have them.

In lieu of flowers, or for those who want to do something in Scott’s memory, I offer you three choices for donations, two meaningful and altruistic and one meaningful, but entirely self-serving:

Pancreatic Cancer Action Network

These folks are a great support for families facing PC. Shortly after Scott’s diagnosis, we were in touch with them and they provided a great deal of support throughout our journey.

Hospice and Palliative Care Charlotte Region

What can I say – these people are angels here on Earth. Scott’s nurse, Amy, was absolutely amazing. I couldn’t have asked for a better person to walk the final steps of this road with. Although, they desperately need to give the nurses cell phones with keyboards so they can text like the rest of us! Really! How the nurses manage to spell out names of meds and detailed instructions with a numerical keypad, I do not know.

Providence Day School
5600 Sardis Road, Charlotte, NC 28270

Ah, the boys’ school. A large part of our village and a huge source of consistency and routine for the boys. And as we move forward, I expect it will remain so. If you want to send them a check and put Max and Cole’s name on the memo line, feel free to do so. There are still many years of tuition ahead!

Peace and love to all of you. The outpouring of support this week has meant so much to me and will mean a lot to the boys as they get older and discover this blog.

And while prayers, good vibes, well wishes and other support are always appreciated and welcome, we know we’ve now got Scott looking out for us too and that’s a BIG amount of love.

23 Comments »

  1. Marisa;
    You and your family are in my family’s thoughts and prayers. This is a great loss to the world! I was blessed to have know Scott during our college years. We had some great times together. I look forward to the memorial service in Michigan where I can finally meet you and your wonderful children. You have my family’s love and support! I will miss my brother! Jeff Urbanski

    Comment by Jeff Urbanski — May 25, 2012 @ 8:51 am | Reply

  2. Marisa, I follow your blog and emailed you a little while back, but I know you have been so busy. I had a personal connection with you and Scott, as when I saw your last posting I was torn. I also lost my Mother three months ago to PC; I know the struggle, hardship, sorrow, and also peace you are feeling at this moment. It’s almost surreal but also a positive relief for you and I’m sure Scott. Scott right now is feeling lightweight, on his journey to a happier place. I know for sure he is looking over you and the boys. He’s in the spirit world for sure. You were there for him through every single moment to the very last-and just know that Scott appreciated that. Much love, Jennifer Ma

    Comment by lildantat — May 25, 2012 @ 9:41 am | Reply

  3. Marisa- not sure if I’ve read anything more beautiful and filled with the true spirit and essence of love at its finest. Our prayers continue to be sent and thank you for sharing such intimate thoughts. We will make a donation to one of the causes you noted. Again, we love you and if you need anything, do not hesitate to contact us.

    Comment by Kenya & Carl — May 25, 2012 @ 9:58 am | Reply

  4. Scott was amazing. I am so blessed to say that we shared some good times together in Richmond. Thank you for sharing your family with us and thank you for setting a great example of what it truly means to be married and to be partners in life. We love you to pieces!

    Comment by Renee and Darrel Johnson — May 25, 2012 @ 10:05 am | Reply

  5. Marisa my dear, I wouldn’t have thought the words I would be saying now would be “thank you,” but thank you for your ever so tender and frank words about this moment in time that rushes forward, but at the same time stands still. To see the blessing in the middle of pain, especially for your boys, is a sign of a truly remarkable and alive person. I will see you monday. Love, MJ

    Comment by Mary Jo — May 25, 2012 @ 10:17 am | Reply

  6. Marisa, thank you for sharing your path – the grace and strength with which you have tread it have been at once touching and inspiring. I pray for the best for you and your sons.

    In Peace,
    Andrew

    Comment by Andrew — May 25, 2012 @ 10:24 am | Reply

  7. Marisa – Ayars’ youngest brother, John, died of ALS in ’07 – but he and his family traveled the same road the four of you have traveled. Five years later Tracy and her two boys are thriving, all because of the strength of their love for John. I know your path forward is unknown, but you have the sure footing of the love you and Scott had and the family you created; Cole and Max will be your rock and I know you will thrive with them – as you said, life is a blessing. My father died of PC, so every time I hear the diagnosis I cringe. Love to you all.

    Comment by Barbara Lore — May 25, 2012 @ 10:25 am | Reply

  8. Marisa, please accept my deepest sympathy for your loss. You and your family are so very much in my thoughts and prayers. You have captured the loss and the blessing so completely in this post. All of us who have been touched by pancreatic cancer know the powerful wound it leaves, but you inspire with a beautiful strength to honor our loved ones by living our lives. Fully. Embracing all the future holds. Scott surely is smiling over you and your boys this very day. May you feel the many prayers holding you close in the days to come. And may you always find that there is Grace enough, Always, Jane

    Comment by Jane — May 25, 2012 @ 11:17 am | Reply

  9. Marissa,

    Thinking of you!! Thank you for letting us know how you and the boys are doing. You are so inspiring to me and so many others. I will hold on to your words of strength and empowerment as we continue on our pc journey. Scott also was such a mighty fighter and so much more, which we will carry in our hearts. You and Scott have made a huge impact in our lives and we are grateful for walking this walk with you…it makes the journey a little easier.

    ((Hugs)) from Michigan, Jane and Michael Cruse

    Comment by Jane Cruse — May 25, 2012 @ 11:58 am | Reply

  10. Marisa: That was a beautifuly written expression of what must be a terribly hard thing to write about at this time. Thank you for sharing your thoughts on your family and Scott as you go through this transition. God bless you and your boys. I will be thinking of you all on this Memorial day weekend.

    Comment by John Minor — May 25, 2012 @ 12:38 pm | Reply

  11. Thank you so much for your eloquent writing. Thank you for your unbelievably positive attitude and strength. Thank you for sharing your story. I Began my own journey with my husband in late January. Your words have helped me to feel safer and stronger for the future of our 3, 5 and 9 year old children. I think of your family often. Bless you.

    Comment by Yvonne — May 25, 2012 @ 1:35 pm | Reply

  12. Marisa, you are an amazing person, thank you for your beautiful words, I know you and your boys have an special angel protecting and surrounding you with love, through your difficult journey you have made me realize that there is always hope, and how we all need to live each day with happiness and joy… sending love and prayers… Kelly

    Comment by Kelly DePerro Marinaro — May 25, 2012 @ 3:46 pm | Reply

  13. You are just amazing, my dear friend. I love you all to pieces!

    Comment by Kimberly Mahuta Laczniak — May 25, 2012 @ 3:59 pm | Reply

  14. you are in our prayers. I promise it WILL get better. Jim and Kris Riva We will see you in MI

    Comment by Jim and Kris Riva — May 25, 2012 @ 7:29 pm | Reply

  15. Marisa, your posts have always been very touching.particularly the last two. I am beginning my 3rd year in the struggle with PC. Much of what you posted touched a nerve with me. Right now I am losing to the side effects of chemo. Blood work is getting too low for treatment. God bless you, Scott and your family. You have fought the battle very well–I hope I can do as well.

    Comment by rick deary — May 25, 2012 @ 8:52 pm | Reply

  16. Marisa, I love this post. I hate that we are yet again in the same boat but your post is awesome and so right on. hang in there. many prayers for continual strenghth as you complete one journey but start a new one soon.

    Comment by Michelle Merimee — May 25, 2012 @ 11:03 pm | Reply

  17. Marisa, your strength and passion you live your life with is evident, continually… I feel so blessed to have been a part of your intimate journey.Thank you for being so transparent in your thoughts and emotions. I am blessed to have witnessed the tangible love you and Scott shared and I am grateful. I will be thinking and praying for you all on Monday…appropriately Memorial day.
    Kristine Aderman RN

    Comment by Kristine Aderman — May 26, 2012 @ 12:17 am | Reply

  18. We all are blessed to know you and your loving family. The kids are amazing. Your words are very touching and passionate. Much strenght and peace for you.

    Comment by Victoria. — May 26, 2012 @ 9:43 am | Reply

  19. Oh Marisa, so very sorry. Sounds like you and the boys will be fine, of course. What a brave, courageous journey you had together… I loved reading your blog and also loved it when you occasionally posted in our little PC support group. A small club we have, a tough journey for all. Hugs to you and your family. JWC/ AKA Jo

    Comment by Jo Chase — May 26, 2012 @ 4:11 pm | Reply

  20. Marisa,

    Your words have been a great source of strength for all your followers, and I’m sure especially for those of us caring for a loved one with pancreatic cancer. Thank you for sharing your journey, and Scott’s, with all of us.

    Comment by Mike Abram — May 27, 2012 @ 8:49 am | Reply

  21. Marisa,

    While I was not able to attend Scott’s memorial service, my spirit and heart were with you, Cole, and Max throughout the day (this is Pat, Leslie Overton’s mom). It goes without detailed explanation how deeply I wish you all did not have to go through this.

    During the past two years, I have kept and will continue always to keep all of you in my daily prayers.

    That being said, I marvel, as Leslie does, at how remarkable your family is. I use the present tense of the verb “be” because Scott is and always will be alive in you and his two wonderful sons. More than that, throughout this most difficult crucible in your lives, Scott found a way to live within many of us.

    Even though Cole and Max have not yet reached adulthood, Scott has already taught them how to be real men, how to face life’s joys and challenges, and how to fill one’s life with love, strength, humor, and gusto.

    Many men, young and old, never get that from their fathers. How fortunate Cole and Max are.

    Now to you, My dear: You have been an extraordinarily strong, supportive, and loving wife and mother. You are such a gift to Scott, to your boys, to your friends, and to the world. The two of you – in your love, purpose, tenacity, and fortitude, have been a lighthouse that will continue to shine and guide many ships that are off course, disoriented, or adrift.

    I thank God for Scott, for you, and for Cole and Max.

    With love,
    Pat

    Comment by Patricia Jaynes — May 29, 2012 @ 5:58 am | Reply

  22. Dear Marisa, Max & Cole,

    My sincere condolances for the loss of your husband and father. I wish you all the strenght in the world, and beyond, to make it through this difficult time, yet I also wish you the brightest, sweetest, most loving memories of Scott. He fought his battle with determination, pride and hope and someone who takes up such an endeavour in such a manner can never lose.
    Ever since my father was diagnosed with metastized pancreatic cancer I have been frequenting your blog. It brought advise, insight, hope, comfort and the determination to keep fighting. We are still fighting. A significant part of the fight is based upon knowing what *can* be done. Scott’s story, or journey I should say, made a tremendous difference. IS making a difference, to us and to fellow patients worldwide. That’s not just my opinion, I believe it is Scott’s legacy. In that, he lives on.
    There is an ocean between us, yet we are bonded by a common story and a common goal. Common grief, common happiness and common hope.

    Please take pride in your husband and father, and in the hand that you, perhaps unknowingly, reached out to anyone reading your blog.

    I can’t imagine Scott being prouder of anyone than he is of you.

    Sincerely,

    Victor van Wulfen & family
    ‘s-Hertogenbosch, the Netherlands

    Comment by Victor van Wulfen — May 29, 2012 @ 7:42 pm | Reply

  23. Marisa,
    My deepest condolences to you and your family. I am humbled by your resilience. My prayers are with you all.
    God bless.

    Comment by Nad├Ęge — June 1, 2012 @ 2:48 pm | Reply


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