Celebration Success and In the Blender

As you well may have guessed, my life has been thrown into a blender and turned onto high!  Things are starting to settle into medium speed now that a week has passed since Steve's life celebration. 

The Celebration was wonderful and sad and exhausting, to say the least.  I'm so pleased with how it turned out.  Steve would have been very impressed and moved by the generous gifts of your time and talents; I know I am.   All agree it was a huge success.  

 

This event would not have been the big success that it was without the work of many talented and willing friends!

Thank you Amy Neuman for spearheading the event: performing most of the organizing and coordination, creating and excuting the RSVPs, word cloud, print outs of wishes and eulogy,  memorial cards, and table center pieces.  Your time and talent were a loving tribute to Steve and are greatly appreciated. 

Thank you VeAnne Virgin for bringing the centerpieces, tying the fish hooks on, and creating the music sound track.  Spot on! 

Thank you Elaine Ableidinger for the beautiful flower arrangements.  They were the perfect touch.

Thank you Deb Mrazek for the AV equipment, framed commitment instructions and tea lights and setting up the memorabilia table and slide show with Sam Lucente. Everyone enjoyed these additions. 

Thank you to each of you who helped with the set up and take down.  You all made it easy and enjoyable.  

As for how I'm doing, I'm staying busy and involved.  My whole family came and I so enjoyed that.  We haven't all been together for 5 years.  Seeing each of you, or hearing from you all was really special and memorable.  Also, I am taking advantage of the bereavement services offered by the hospice organization and I must say, so far it's been really helpful. 

Mostly, all of the support I've received has really affected me more than I can explain. I'm doing OK and grieving and then doing OK again.  It's like waves.  I'm learning to flow with them.  

Invitation for Oct 17th Celebration

The rhythm of life right now for myself and Steve's friends and family is busy.  We are preparing for the Celebration of Steve to be held on Saturday, October 17 in Camas, WA.  

This is an open event to share stories and to honor Steve.  So, if you'd like to come join us, RSVP to Amy at neumanpdx@gmail.com by October 10th.  For more details, please read the blog post dated Oct 5, "Celebration of Steve's Life".  

I'm doing OK and just can't say enough thank you's to all of Steve's and my friends who are helping with the planning.  

Receiving your cards and emails has given me such a nice warm feeling, a sense of connection and sharing that is healing.  Thank you so very much.  

Celebration of Steve's Life

Our friends and family have planned a celebration of Steve’s life. It will be held on Saturday, October 17th in Camas, Washington.  For those of you that wish to attend please r.s.v.p by Friday, Oct 9th to Amy Neuman at neumanpdx@gmail.com or 503-927-2587 and she will send you an invitation.  

The celebration will provide an open opportunity for people to share their thoughts and stories.  If you are not able to attend but wish to contribute, we will create a word cloud in remembrance of Steve.  Please send Amy one word that exemplifies Steve’s wonderful character or what he meant to you. Also, any memorable stories you have but don't wish to share yourself during the celebration, please send them along for integration into a eulogy.  We are also collecting photos for a slide show.  You can either upload them here https://www.yogile.com/steve or you can email them directly to Amy (neumanpdx@gmail.com)

The initial chaos and waterfall are behind me now.  Ahead is the period of rebuilding which will happen concurrently and following period of grief and loss of someone who was at the very core of my life.

I sincerely appreciate all the love, concern and help that I've received during this life changing event.  How can I tell you how important it's been!  

Dixie

Next steps and planning.

Family and friends are gathering around me, holding me physically and emtionally and even doing my dishes and housecleaning! I'm grateful for that.  I just want to post a short blog to say that we are planning to have a life celebration for Steve.  The date, time and place are being worked out.  Our target date is October 17 near Camas, Washington but this is far from final.  However, as Steve would have done, we are sharing as the ideas are in the works.  More later.  

Journey to Peace

Peace has arrived for Steve. 

He completed his journey at 3:20 today in the arms of family. 

Family and Friends Time

Steve's brothers have arrived safe and sound after their non-stop drive from Chicago in a rental truck. Wow!  Now all of us are here with Steve.  He's peaceful and quiet.  I've been sharing all of your messages and photos with him which are coming from around the world: Tailand, China, Peru, Norway, Ireland to name a few from far away.   We are so grateful for your heartfelt expressions of affection and respect for Steve.  What a wonderful testament to his life that he has live so well.  

Vigil

Dear friends and family.  Thank you all for your wonderful notes, emails, texts and visits.  They mean so much to me and Steve.  I read them all to him as I sit next to him, at home, peacefully and with a full range of feelings.  Today, he's sleeping more, opens his eyes, smiles when I kiss him.  He says he's not hurting and seems comfortable.  Gregg and Kevin should arrive later today and we are looking forward to seeing them here safe and sound after their drive from Chicago.  It's a long story, but they had to drive here.  

We think he will be with us for the better part of this week, but of course, we are only guessing.  We may know more when the hospice nurse comes today.  If things change, I'll post an update.  Also, if you want immediate access to the posts, you need to go to the website and not wait for the automatic distribution which occurs about midnight each day. 

Thanks again everyone. 

On Hospice Care

The last time I posted, Steve was weak but getting around some.  Unfortunately, his journey is moving much faster than I ever imagined.  Today, I became so concerned that I called the hospice and asked them to send someone out to us.  We were supposed to see our regular nurse for the first time on Monday, but I sensed we couldn't wait til then.  Time for help. Loni came out and got us both settled, more comfortable, and explained everything I can do for his comfort.  Just what I needed.  Steve and I asked her directly "how long"?  She didn't know exactly, but said it's days. He's in the stage where I cannot leave him unattended, not even for a short errand. Also, it's time to call in family. His brothers are on their way but won't arrive for several days.  Steve's brother's partner is a licensed nurse practitioner  who has first hand experience helping during the dying process and she's coming tonight to be with us.  I about cried from relief and gratitude!  

Many of you have expressed a desire to visit.  I'll be checking with him day to day, hour to hour on his energy levels and he'll let me know what he wants to do.   Meanwhile, if you would like to say anything to him, send a message and we will read them to him.  

So, the next steps are before us and we will all do what we can, each in our own way.  

Settling in at Home

You all must have filled in the blank air time and firgured out that Steve is home now.  Jude and Breeze were so excited to see him!  When I can't find Breeze, I just look on Steve's bed. She's there with him.  Much of our focus is on working out where and how to keep him as comfortable as possible. Being as weak and exhausted as he is, Steve spends the most time propped in a bed.  He's able to move to the family room about once or twice a day to his new La-Z-Boy chair.   He's able to get to and fro with a cane now.  Unfortunately, every movement is a struggle and tires him.  

Today, we had our hospice intake meeting which went well.  We will meet our nurse and social worker on Monday. It's reassuring to both Steve and me that there is an expert team at our backs ready to help us and educate us on the rest of our journey.  Many of you have shared stories of your experiences with hospice. Thank you.  That also helps.  

We just want each of you to know that in whatever fashion you are helping, we notice and your thoughts, prayers, energies, cards, emails. texts, food dishes, poems, pictures for "The Wall", cleaning up apples in the yard, book wrangling, and phone calls all add bright little spots to our days.  Thank you seems so inadequate so I'll just say you've touched our hearts!

Today?

What an experience trying to get Steve released from the hospital. Seems like they don't want to let him go. Read in here that he's not home yet! We've managed all the hoops, and he's dressed and ready to go but the hospitalist forgot to give us a prescription for a medication. So, we sit and wait a little longer while they chase him down. I'm thinking he's at lunch! LOL!    

Steve's pain is managed well, but as you can imagine, leaves him groggy and sleepy. He's still on top of things though and was the one who caught the missing prescription. That's our Steve. 

Choices

After much soul searching, Steve and I have decided to stop any further clinical trials and to return to the comfort of our home.  We will engage hospice care so we can now focus on quality of life rather than his cancer.  Over the last few days, his blood values have stabilized.  But, the white blood cells are still high after all of the various treatments he has tried. He is very weak and has difficulty eating.  Engaging hospice will allow Steve to be at home where he can enjoy the benefit of being near family, Jude and Breeze, and friends. We are not sure when Steve will be released from the hospital but are hoping it is soon. 

What Matters Most at End of One's Life

We resonate so much with this TED talk...http://www.ted.com/talks/bj_miller_what_really_matters_at_the_end_of_life?utm_campaign=social&utm_medium=referral&utm_source=facebook.com&utm_content=talk&utm_term=social-science#t-39960

Awaiting More Clarity | Just in Time Delight, Keeps on Giving

Hi Steve here. I'm feeling better and have more energy than in weeks. Now to work on gaining weight-I never thought eating would be a chore. A set of MRI scans I had in the wee hours of the morning hold the promise of providing the most insights to what's going on in my GI tract; particularly since my white blood cell count continues to rise - yet standard tests for infections do not reveal any. Here we are at 8 pm and have not seen the results from the radiologist. 

Dixie brought into our hospital room a stack of pictures that she shared with me then began creating a collage of them on the wall in front of me. You can still send something to dixieandsteve360. (We'll be posting a few more Dixie left at home). It's funny, every time I look at the collage I am more deeply touched by it. Thank you so much.

Taking It's Toll

Another test was ordered today- an MRI to try to determine why Steve has a persistent infection and climbing bilirubin levels.  We will get the results tomorrow. Meanwhile, Steve is feeling very weak and exhausted. He's very ill.  Visiting and talking on the phone and even texting are actions that require his energy and he doesn't have much of that.  

His friend, Deb, came up with a great idea.  We know you all want to help, so you can send Steve an image, photo or whatever you'd like.  As long as it fits on an 8.5 x 11 sheet of paper, we will print it out and tape it on Steve's walls.  If you want to send something, send it to dixieandsteve360@gmail.com or debmrazek@gmail.com.  

 

Filling in Some Information

We seem to be getting a better picture of Steve's condition. Here's a summary: an ultrasound showed clots in both legs; he has had an inferior vena cava filter put in to catch any migrating clots; the bowel bleeding has stopped; the CT scan did not reveal anything helpful; his platelets have stabilized, the hemoglobin and hematocrit have been very worrisome but seem to be ok today; he's had multiple blood transfusions; he's had night fevers and the white blood cell count is up as well as his bilirubin levels; he's on IV antibiotics to address possible infection. Too much data?  That's about how we feel!   What does it all mean?  Well, for sure he will be in the hospital at least a few days more and we wait and see.  It seems many of these things except the infection part are rather common with pancreas cancer.  

Our days are filled with nurses and doctors coming and going. With vitals bring taken, blood pumped in and then drawn out again. What a different world!

New Developments

Today, Steve is still in the hospital.  His situation is complicated and seems to improve in some respects and gets worse in others.  I would love to have details to share on what's happening and why. But there are no clear answers right now. It seems most of this is the result of the cancer and/or chemo.  Overall, what's happening is not good or very encouraging.  Dixie is doing ok for the moment. Thank goodness the hospital is about 15 minutes away and she can run home to take care of  herself and dogs as needed.   We know many of you are wondering if there is anything you can do to help.  We are grateful and comforted knowing that help will be there when we need it.  We will let you know when, what and where we could use help.  

Thank you for all your kind messages and please forgive the absence of response. Your care means so much. Maybe what Dixie really needs is a blog ghost writer!  

Collaboration and Deductions

The first thing on my mind is how Steve is doing.  Today, he's bright, alert, and on top of all that's going on medically and doing an excellent job supervising the nurses in his collaborative way.  It's so nice to see him in action!  Also on the plus side; he's now in a quiet private room!  What an improvement over his last room.  Think noisy, irritating roommate while you are weak, exhausted and stressed out. 

The medical picture is next.  The medical team here, and including his oncologist at Virginia Mason,  are postulating that he may have an infection somewhere.   They started him on IV antibiotics this morning.  High on the suspicion list is his bile duct or the area of the stent.  So he's getting an abdominal CT scan this afternoon.  They ran a battery of blood test to look for disseminated intavascular cooagulation (DIC).  The results were not consistent with DIC.  I'm glad to see there is medical sleuthing happening!  

I hope this gives you all a clearer picture of what's being done even if there are no answers yet.   I do understand how not knowing is hard. 

Paste Frowny Face Here

Dog gone it! Steve's blood counts are not cooperating and the hospitalist says he will stay where he is for now. She is uncertain why this is happening and will be discussing what's next with us. I don't know how worried to be right now so it's good to be under constant observation. Wish it were  better news.  

Better Today

Steve is better today. We are pretty sure he'll be home from the hospital tomorrow. Yay!

What's Happening Now

We are seeing  a welcome stabilaztion of Steve's blood levels which means the internal bleeding is much less. He's headed in the right direction.  Today, the doctors felt he did not need to be in the special care unit and was moved to the regular care unit. He will stay tonight and be assessed tomorrow. I know you are all anxious to hear news. Right now, we are uncertain of the implications of all this and will share as we learn.