Life and it's curve balls

Its been a few days since I have written but there just hasn't been much time.Monday dawned as a very low and somewhat scary day for all of us. Steve's symptoms had worsened and we were feeling very uneasy. I felt like he was not going to make it out of this hospital. He was truly completely miserable and nothing was helping. I stayed in his room that night and slept fitfully with a heavy heart.
Tuesday everyone was in town and wanted to see him, I was very leery but I gave them a little time each.Miraculously,Steve seemed a lot stronger than he had in days.Monday night they had made the decision to take him off of all oral medications and go strictly IV. This would let his gut rest and hopefully address the nausea better. They also switched to a better pain medicine. It was working very well.  He had animated conversations with each of the kids. And all was beginning to seem right with the world again. Kimber and Zach were headed in to see him in the afternoon so I headed home to get some time with my kids and a much needed shower. They stayed quite a while longer than I had hoped but Steve seemed pretty content just tired when I arrived that night. I figure this was the chemo finally doing its job. Yay!
Wednesday was the complete opposite but I chalked it up to having over done it the day before. The most results of his labs said the infection was gone so that was good news. What was confusing was why was he feeling worse then? More nausea, more pain, less comfort all the way around.The palliative care team has been great this week at addressing symptoms instead of the whole enchilada. They started making adjustments and are continuing to do so each day. One of the super big bummers was the diagnosis of Thrush. He has a pretty severe case of it and it is contributing to his nausea. The started him on the standard drug on Wednesday but it really isn't helping so today they started him on an IV medication.
Thursday was Christmas Eve. As much as I had hoped Steve would be home for Christmas that was not going to happen. So what to do? I have these fantastic grand kids 2 teenagers still at home. I desperately wanted to be there Christmas morning. I wrestled and finally came up with a plan. i would stay at the hospital until 4 am and then head home. I could help Santa with his duties and then get a little shut eye before the littles woke up. At 7 am Brian and Britta would come by and spend the morning with Steve until I could get here. The kids woke up around 7:30 and we had a wonderful Christmas morning. We were able to put aside what was happening in Boston and just be in the moment. It was wonderful. It was all I wanted it to be and I am very grateful. Sweet friends had been bringing sweet treats all week and that morning a dear friend brought cinnamon rolls. Britta had made some as well so life was very good. Too soon it was time to face reality and head to the hospital. I was really frustrated because I love my husband but I just wanted to hold on to the normalcy at home for a little while longer. I finally couldn't deal and had a much needed melt down. I cried on the phone to Steve about my frustration and I think it was a good thing. I have been trying not to show any weakness because I didn't want him to worry about me. Now I think that might have been interpreted as callousness. It was a good conversation and we aren't able to have those too often. It was a good   Christmas gift. When I arrived back at the hospital, Steve did  not look as good as he had sounded on the phone and I am glad we had the chance to share that morning. I had asked Matthew to make a traditional Christmas dinner and I would come home for it. I guess that was a little overly optimistic. It rapidly became apparent that I would not be leaving the hospital again that day. Such is life with a cancer patient.We don't know when Steve will get out of here but we greet each new day with hope.
The week has been full of curve balls and continues to be so. I am so grateful to be surrounded by the love and support of my children. This is a harsh and growing experience for all of us.We have laughed, cried, argued and hugged. The road is uncertain and I am sure there will continue to be pot holes but I know I am not alone - I will never be alone.