My Crappy Pancreas

May 11, 2012

The view from here

Filed under: hospice — marisaandscott @ 11:18 pm

Marisa says: It seems I am always writing a post in my head, especially these days, when I haven’t posted an update in so long. But, as you know, I haven’t. So, I am trying to take advantage of a few minutes sitting in one place to let you know where things are.

In the “when life gives you lemons, learn to make a margarita” category, we decided to take the boys out of school for a week to go on a cruise right after Easter. Generic Caribbean, I called it – lots of sunshine, no dishes to wash. Given the transition to hospice, the uncertainty ahead as well as the need to spend some quality time as a family, we thought it was a good idea. Actually, there was much discussion about how we would manage it, what to do if a health care crisis arose, and a consideration of most scenarios, but with the endorsement of the hospice folks, we decided to go for it. Got the go ahead on a Thursday and found a ship that sailed the next Tuesday. How’s that for lead time!

The cruise was great! We didn’t even get off the boat. Scott found a balance where he would spend one day doing something with us and then rest a day, and with a great kids program, the kids had a good time, whether or not they were with us. I honestly didn’t realize how much we needed the time together, but in retrospect, when you think about it, the boys have been busy with school and other activities, and although I am working from home quite a bit these days, during the day I am working, and not always focused on Scott. So, the trip gave us some solid family time to talk, laugh, spend time together and recenter our family. I’m glad we were able to do it (and thankful that the time away was medically uneventful).

Since returning, we’ve continued to work with the hospice team, especially our fantastic nurse. She comes by a couple times a week to check on Scott and manage the medical aspects of his care. She is a resource for me, as well, helping me sort through things and understand where we are and what is ahead.

Since the first paracentesis, Scott has had two more. Both times they drained three liters from his abdomen. It is refilling faster than it initially did, too. They have talked about putting in a catheter that would allow us to drain the fluid at home when needed and keep Scott more comfortable, but he just doesn’t want it. At this point, he would rather go in to the hospital to have it drained every week or two, than to have something sticking out of him. And while I may not agree and worry about the logistics as he loses his strength, it is his decision and I do respect it.

We also spent a week in residence at the hospice house to support a change in medication. Initially we were supposed to be there three or four days, which then turned into a week. Scott was also not thrilled with that, but dutifully soldiered through, and is now a lot more comfortable, having gone through the transition.

The other transition continues as well. I have no idea what the number on the scale is, and it really isn’t relevant, but I see the continued loss of weight and overall body mass. He sleeps most of the day now, trying to save what energy he has for an hour or so in the evening when the boys are home, although he did make it to see the Avengers last weekend to celebrate Cole’s birthday. His appetite comes and goes, mostly snacks and a few small meals, so as not to cross the line that turns the often present nausea into vomiting. He’s rediscovered a love for jello.

One of the hardest parts for Scott over the past couple weeks has been the loss of his ability to communicate, both through the gradual weakening of his voice and the loss of his ability to text, as that has been his primary means of communication. His fingers aren’t steady, even after adding a physical keyboard, his voice isn’t strong enough for dictation and his mind is not always clear. It is hard that his world is shrinking at a time when he so desperately wants to stay connected. We have adjusted the meds to ensure they are not the cause of the confusion. It just appears to be part of the process, as toxins begin to accumulate in his system, and unfortunately, where we are right now, Scott knows he isn’t always clear.

But, as always, there are bright spots, visits from friends that brighten his day or stolen moments with the boys. He frequently asks when he is going to feel better, when he is going to have more energy so he can be more active. It breaks my heart to hear that, and I tell him that we will just have to make the most of where we are now, and will continue to try to do so. There’s nothing that will make this all better. We just continue with the journey, thankful to still be on the road.

And while we’re on that road, please keep those BIG prayers coming!

About these ads

32 Comments »

  1. My hopes and prayers are with you and your familly. I hope Scott can be comfortable, even if he isn’t always clear, and can enjoy the boys, even if his energy is low. You’re a hero and teaching us what grace truly means. I hope every minute you have with Scott is rich and meaningful and full of love.

    Comment by Clara Silver — May 11, 2012 @ 11:32 pm | Reply

  2. My undying attention should be utilized, since this man of yours was my most favorite friend. I am more than concerned; please tell me how to help, if that is conceivable, Marisa?

    Comment by David — May 11, 2012 @ 11:48 pm | Reply

  3. Eloquent as always, thank you for taking the time to update us all. I wish you more stolen moments and lucidity, and continued strength and grace. I send sooo much love to you and your family, Marisa my dear. Know that you all are in my thoughts all the time.

    Comment by Alicia Zambelli — May 12, 2012 @ 12:16 am | Reply

  4. I am new to your blog but had been checking in every day to see when your latest blog update comes in. You are a brave family and I wish you all the best. I have been diagnosed with stage 3 PC last month and just beginning the fight. You guys are an inspiration. Regards. Madhur

    Comment by Madhur Mehta — May 12, 2012 @ 5:57 am | Reply

  5. May the peace of the Holy spirit be with you all.

    Comment by Barbara Lore — May 12, 2012 @ 7:35 am | Reply

  6. I have visited your blog a couple of times but this post was close to my heart. I will pray for you and your family, never give up hope.

    Comment by Ron Cruse — May 12, 2012 @ 8:15 am | Reply

  7. Marisa — I just sent Scott an email on his mac.com address. Would you please be so kind as to read it to him? Thanks!
    Praying big for you and yours,
    Kim

    Comment by Kim Karman Dobson — May 12, 2012 @ 10:12 am | Reply

  8. Big prayers coming your way. I know how hard it is to stay positive and realistic, you are doing such a great job. Wishing you and your family all the best in the coming months. Camilla

    Comment by Artisan — May 12, 2012 @ 12:06 pm | Reply

  9. My father is at the exact same place right now. This blog has been so, so helpful to my sister and I as we navigate my dad’s journey. Thank you.

    Comment by Stephanie Byrne — May 12, 2012 @ 12:16 pm | Reply

  10. Marisa, thinking of you all and sending love and prayers. May God bless you and Scott and the boys and wrap his arms around you with his love, especially now. Praying Big!!!! Kelly DePerro Marinaro

    Comment by Kelly DePerro Marinaro — May 12, 2012 @ 3:48 pm | Reply

  11. You and your family are always in my prayers! Please know that those who have followed this blog admire the courage with which you face each day. I admire your wisdom and love. It’s inspirational. Prayers for strength and peace. Gwenda Tanner Ward

    Comment by Gwenda Ward — May 12, 2012 @ 6:31 pm | Reply

  12. My heart just breaks for all of you. The strength you have is such an inspiration. I wish I could be there to hug all of you and make it better.

    Comment by Indigo — May 12, 2012 @ 7:41 pm | Reply

  13. Thank you for the update. I think of you often and check here to make sure I haven’t missed anything. As always, I am in awe of your thoughtfulness at such a difficult time. I’m so glad that you were able to enjoy a trip together, and that Scott is able to enjoy the boys and time with friends. I wish you many more good days!

    Comment by Audrey Ettinger — May 12, 2012 @ 10:21 pm | Reply

  14. As always, I’m so amazed at the strength you are able to have for your boys – your men. I hope you know that my thoughts are with you each and every day.

    Comment by Cyndi — May 13, 2012 @ 12:54 am | Reply

  15. Thinking of all of you today and for the small moments of joy to shine in the darkness. Much love, thoughts, and heartfelt prayers. Mike, Amy, and the kids.

    Comment by Amy — May 13, 2012 @ 9:37 am | Reply

  16. We’ve been cheering you all along on your journey since we “met” you last year while fighting my mother in law’s battle with pancreatic cancer. We are constantly amazed at the strength you all show and for all the Scott’s body has endured. Sending all the prayers in the world to you all as you enjoy every little moment together – I know how difficult this is for you and your boys. Never give up hope. Thank you for sharing your continued story. Anne from Nashville.

    Comment by ANNE — May 13, 2012 @ 12:55 pm | Reply

  17. My thoughts and prayers are with you…

    Comment by Donna M Walker — May 13, 2012 @ 3:43 pm | Reply

  18. My niece just shared you blog with me. I totally understand where you are and how hard this is. We have been taking care of my brother since November when he was diagnosed with the same cancer in Santa Fe, NM. He is at the same stage as your husband. My heart goes out to you and your family and Scott. This is breaking my heart beyond words. Losing my brother this way is very difficult with our family. Hoping for a miracle for all of us and for your family.

    Comment by Marcella Sandoval — May 13, 2012 @ 4:47 pm | Reply

  19. Marissa,Scott and boys,

    Thinking of you daily and praying BIG! As always your family is inspirational. There are many familys that are in this with you and have been touched by your wonderful words and strength. Thank you for this gift.

    Steve, Paige, Cole, Margaret and Conner Lee

    Comment by Paige Lee — May 13, 2012 @ 7:08 pm | Reply

  20. Dear Marissa & Scott,

    Thinking of you all the time and wishing you a Mother’s Day full of blessings!! I got your alert yesterday that you had posted, but both Michael & I were sick all weekend with bad headaches. He also had the added pain from pancreatic cancer and some mysterious cough that won’t stop. Maybe it’s a bug we’re both fighting or the fact we tried to work in the yard on a good day. He’s on Gemzar now, second cycle, and his Dr. wants to add Tarceva to the mix. I just hope it won’t add more fatigue or worsen the neuropathy, which it is not supposed to.

    You and Scott are always an inspiration to us and so many. We have been in this battle with you now for 22 months. We have beat the odds and both Scott & Michael have become their own statistic, along with others. I know reading back in Scott’s blog that he was very determined in this. So many of your words bring Life, Hope and Peace to so many. You have also connected more people than you know that bring the same strength that you have shown. Thank You & bless you for this!! We are in this very different world with you and we help carry the burden of each other and the Spirit has triumphed over mountains and through valleys. The ripple effect is so Great!!!

    We will continue to Pray Big!!

    Hugs…Jane from Michigan

    Comment by Jane Cruse — May 13, 2012 @ 7:36 pm | Reply

  21. Marisa & Scott- sending you love, light and many special moments in this season you’re sharing. We love you immensely and feel absolute gratitude to have such amazing friends in our lives. Your journey is one of the most amazing testimonies I’ve ever witnessed. Our prayers are strong and BIG!

    Comment by Kenya & Carl — May 14, 2012 @ 3:41 pm | Reply

  22. Scott is always in our prayers. Send all of our love Kenrick, Ellie and the boys

    Comment by Ellie Santiago — May 14, 2012 @ 9:04 pm | Reply

  23. Dear Marisa and Scott – You are a light in the dark valley of pancreatic cancer. Thank you for sharing your heart with us throughout your journey. Your love, your humor, your sense of rightness, your unbroken circle of faith and family, these are just a few of the things that have spoken to me through your postings. Marisa, you are a gift. I know that Scott is blessed beyond measure to have you by his side. When communication fails him, I believe his heart will beat a steady message of love keeping you connected. I lift up Scott with prayers BIG, and also you, Marisa, as you give of yourself daily… you are so much in my thoughts and prayers – for strength, for calm, for wisdom, for understanding and for peace. Trusting Grace to Hold you Close, Always, Jane

    Comment by Jane — May 14, 2012 @ 10:19 pm | Reply

  24. Marisa, I think of you and Scott and the boys often and continue to pray BIG. What I appreciate about you and Scott and your approach to this journey is that you “dance in the rain”. You capture each moment, face each crisis your way and always with hope. Uncle Phetin and I love you and support you through our prayers and good thoughts that we send your way. Love always Aunt Joyce

    Comment by Aunt Joyce — May 15, 2012 @ 6:47 am | Reply

  25. Thinking of you, Praying for you guys, Inspired by your strength!

    Comment by Dinika — May 15, 2012 @ 10:02 am | Reply

  26. Oh Marisa! What a brave and courageous family you are! I hope some day you will know how your writing touches and gives hope to so many people in so many ways and in all types of situations! It always reminds me how fragile life is and not to take it for granted! I so wish there were some magic potion I could offer, but know that I continue to PRAY Big, Bigger and tbe Biggest prayers ever!!! Love and Prayers from Richmond!

    Comment by Yvette Bell — May 15, 2012 @ 10:30 am | Reply

  27. Marissa…. I am praying for you and your family as you go thru this transition…….I too have been through it all with my husband Clint….I know exactly what you are experiencing as we went thru all these same experiences with the pancreatic cancer and how it treated him at the end on October 26, 2011…….God bless you and give you the strength to do what you need to do….you are an incredible mom and companion to your sweetheart and a blessed caregiver….just know that he is in God’s hands and when the time comes, you will find the strength to do what you have to do to let him not suffer any more…it is the hardest journey for any family……you all have fought it valiantly and there is peace in knowing that you did everything medically possible that could be done…….God and his angels be with you in the coming days. Lovingly, Kathy Nobles

    Comment by Kathy Nobles — May 15, 2012 @ 7:11 pm | Reply

  28. Marrisa, My husband was recently diagnosed with pancreatic cancer and we have been frantically searching for information about various treatment options. In our research, we have come across the use of Low-Dose Naltrexone (LDN) in treating cancer patients. This drug is basically used for the treatment of addiction patient, but when used in small quantities can strengthen the immune system of cancer patients and enable them to fight the disease. Here is a link that provides some information on it http://ldn.proboards.com/index.cgi?board=links&action=display&thread=760. You can do more research on the internet.We are also planning to ask our doctor too about it. My best wishes are with you and your husband. Warm regards, Sucharita Mehta, India

    Comment by Sucharita Mehta — May 16, 2012 @ 1:29 pm | Reply

  29. Scott and Marisa, Just a note to remind you of my continuation to “Pray Big”. I am in awe of how well you both have continued to endure this journey. I am so blessed to have been witness to your love and strength you both share. Just know you are changing peoples lives with your challenge and endurance,your love for one another is so beautiful and I have been a spectator…Thank you for being transparent, I am with you all in spirit. Love, Kristine Aderman RN.- LCI & LDHH.
    .

    Comment by Kristine Aderman — May 16, 2012 @ 11:48 pm | Reply

  30. Marissa, We continue to PRAY BIG. Thank you for the model of strength, grace and devotion that the four of you live each day. I will send Scott an occasional voice mail that can be played for him. We love all of you. Aunt Carole

    Comment by Carole Woolfork — May 17, 2012 @ 9:19 am | Reply

  31. You both are in my prayers.

    Comment by Bronco46 — May 21, 2012 @ 8:40 am | Reply

  32. Marisa, you all remain in our thoughts and we continue to pray BIG. I’m thankful you all got away on the cruise after Easter. I also remain in awe of the magnitude, beauty, strength, patience, and unconditionality of the love you all have for each other. I can’t think of any four people who better understand or live out the Biblical ideal of “love.”

    Love you all.

    Leslie

    Comment by Leslie Overton — May 22, 2012 @ 1:21 pm | Reply


RSS feed for comments on this post. TrackBack URI

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

The Rubric Theme. Create a free website or blog at WordPress.com.

Follow

Get every new post delivered to your Inbox.

Join 316 other followers

%d bloggers like this: