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.