Two steps forward, one step back

Today begins week 4 of Steve in the hospital. Not one of us, including the doctors, imagined we would still be here. Two weeks ago they had transitioned him to a pain patch instead of a pain medicine drip. But here we still are. The transition off of some of the stronger medications has not gone as well as planned. Steve was struggling with a bit of brain fog with so much on board. Unfortunately that fog made it seem as though his pain was more under control than it actually was. As we pulled back the pain meds and some of the other meds causing the fog, the ugly truth was revealed. The good news is that Steve's fog is mostly gone. He is clearer headed and is trying to do all the things the doctors want him to. The bad news is that reducing the pain patch was not the right move. And when the pain hits it sets off a chain reaction of other symptoms from sweating to nausea to dizziness, etc. And actually, because of the way they did the med switching they are not sure if the pain has increased or it was just being masked before. This is really tough to watch. One of the concerns is that there might  be more going on inside of him than meets the eye. They are going to do an endoscopy today or Monday. They need to find out just what the tumors are doing and if there is something else like an ulcer or something. I almost wish they would find something definitive-even if it is bad-so they can do something for him.
There have been a few sweet things in all of this. One of them was washing Steve's hair. He is pretty weak and so I was helping him get cleaned up. As I was washing his hair it was almost spiritual for me - this simple act. I was filled with so much love for this man I have spent the last 38 years of my life with. He has washed my hair for me over the years if I was very pregnant or recovering from a surgery. I always enjoyed it but this was even more sweet.
This week has not been easy. Two steps forward - one step back on most days. Still, we are surrounded by the love of family and friends. I brought the stack of cards and letters to the hospital today.I wanted Steve to know how much he is loved. He was overwhelmed. Thank you to all of you. We feel your prayers and your care and concern. It helps us through each day

Hopeful News

This past week has been a real roller coaster ride. One day they were preparing us for a downhill slide and the next they were exuberant at the littlest progress. Last week they started Steve on a new drug called  Octreotide to treat one of his major symptoms and it seems to be working - finally! They also believe they have got his infections under control. Still battling some fierce thrush but its slowly responding to treatment. Today the doctors came in pleased to see his organs finally responding to the treatments they have been prescribing. Of course the treatments change all the time and the med list is dizzying but it is slowly shrinking. Now the challenge is getting the rest of his body on board. He has been in a hospital bed for nearly 3 weeks and eating next to nothing so we have our work cut out for us.IF we can get him able to eat and IF we can get him up and walking and IF we can get all the retained fluid moving he might be able to go home next week, Those are the biggest ifs. There is still pain and nausea management that is ongoing and a few other lesser concerns but we are starting to see light.

Steve's prognosis is still not a good one but going home is a good thing for so many reasons. There is nothing quite like sleeping in your own bed - for starters. He would be surrounded by his family too which is always a good thing. And so much more.. So the immediate goals are strengthening and eating. Long term is becoming strong enough to withstand chemo again. His tumors are responding and if we can really kick their butt, he could start to feel really good again. That is something he hasn't experienced in quite a while. I would just love to see him smile again. That would be the best day this year. So I am embarking on project smile. Still working on the details...

Our ward at church split this weekend. It is bittersweet to see the changes but they are how we grow. I already feel supported though. Our brand new bishop of less than 12 hours came to visit us last night. I had gone home for the evening so it was perfect. He wanted us to know that he cared for us and that he would be looking out for my boys while I take care of Steve. That is a huge relief to know he is taking a personal interest in us while he has the HUGE task of staffing an entire ward. And he himself was at my house at 5:30 am picking my boys up for seminary since I slept at the hospital.

So I look at 2016 with hope. Hope that my husband can come home this month. Hope that he can regain some quality of life for however long the Lord has in mind. Hope that I can see him smile again. Along with that is the assurance that my family is loved and supported. Awesome friends and family have already surpassed what I could hope for and I know they are not done.

Of course it could all change tomorrow. Living with cancer is full of many unknowns but so is much of life. It's a wild ride!