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. 

Back in the ER

Last night, Steve started having apparent GI bleeding again so we took off for the hospital at 2 am.  It seems like the same thing that happened when he was admitted into the hospital in June.  So, right now, he's resting comforably, has had transfusions to help his blood levels recover.  The plan is that the transfusions will help his blood clot and the bleeding will stop.  Right now, no one knows where the bleeding is in his GI or why.  We'll see what the doctors propose about that tomorrow.  I'm glad to see him more comfortable and he's resting better than he has for a long while.  They have managed his pain pretty good which is relief for both of us.  Once we find out more, we'll let you know.  Thanks, everyone for your ongoing support!  It means a lot to both of us.  

Oxycodone Ughh!

Tried Oxycodone in place of Vicaden last night- yeow! Be side effects of Oxycodone kept me up last night. Will be getting back to Vicaden ASAP

New Infusion Cycle, Doing Okay

Steve's infusion went as planned. The doctor prescribed stronger pain relief so Steve can be more mobile and sleep through the night. Steve'll try it! Hope it doesn't make him hazy.

So far 24hrs later Steve is feeling like he's got the flu coming on (typical) we'll see what the next day will bring.

We still need to share Steve's birthday at the beach (that happened last week! Stay tuned.