I have been putting off updating the blog because I really don't have any good news. After Marc's discharge from MD Anderson he got progressively weaker. It took two weeks to get home health to the house to get physical therapy started back up and by that time he could hardly stand, and then only with a lot of help. Another week of PT showed no improvement so I started calling trying to get him back into rehabilitation so that he could get some intensive therapy. That took another week.
The first day in rehabilitation Marc would do nothing but lay in bed with his eyes closed. He wouldn't even talk to me. He was angry that he was there. I talked to him that night and explained that I didn't want him there any more than he wanted to be there but it was to the point that I could no longer care for him at home. I told him that he needed to work hard to regain his strength to get back home. The next morning it was like he was a completely different person, his attitude had changed and he was responding to me and to the staff. He even smiled and shook hands with the physical and occupational therapists before I left for work. He progressed quickly from being basically bed bound, to being in the wheelchair most of the day and walking with the walker. By the end of the first week he was getting up alone, he was a little unsteady, but got up under his own power. He was also staying up all day and most of the night and driving the staff nuts. They had wheelchair alarms and bed alarms set but that didn't make any difference, when Marc wanted up he was getting up!
Last Friday he started complaining of abdominal pain again. The same pain as before. The pain seemed to radiate around his waistline. The pain was controlled the first couple of days with Tylenol but gradually became more severe. The internist evaluated Marc and felt that the pain might be neurological, and compared it to the pain that someone with shingles feels but much worse because it encircled the abdomen and wasn't on just one side as it is with shingles. Because Marc had been on long term, high dose steroid therapy he felt that there might be compression of spinal nerves. As I thought about it, that made since as Marc is now eye to eye with me when we stand face to face and he had always been nearly a head taller than me. An X-ray of the lumbar spine was ordered which did show an old compression fracture of the L2 disk. I asked what they meant by old and was told that some calcification of the fracture was present so it could be a few weeks to a few months old. Which means the IVC filter was probably not the cause of the pain in the first place. Why the pain stopped for a time after the filter was manipulated is unknown. In order to confirm the diagnosis, Marc has an MRI of the lumbar spine scheduled on Friday afternoon.
A pain management specialist was consulted but so far has just changed the pain medication. The stronger medication helped a little at first but Marc is now on the maximum dose with little relief. Any movement, even taking a deep breath causes him to cry out in pain. I am able to get him up in the wheelchair in the morning when I go in and he will eat breakfast. I usually park him in the lobby by the nurse when I leave for work and they will put him after bed after physical therapy. He will usually remain in bed most of the day and I will then get him up again when I get there after work. He was up in the chair most of the afternoon today. I was told he took a long nap after this morning's physical therapy. Steve came in to see him this afternoon while he was eating a late lunch. Steve asked if he wanted some ice cream and Marc's response was a thumbs up. So Steve went out and bought him a pint of Blue Bell ice cream. As you can see by the picture, Marc really enjoyed the treat! When I got there after work Marc had just finished eating part of his dinner and had pushed away the rest. He pointed to the bed. I could tell he was tired and wanted to get back into bed. He still has enough strength that I can transfer him without help but he can only stand a few seconds with assistance because of the pain.
He seemed to sleep for a couple of hours but would moan out in pain with any movement. When I kissed him goodbye tonight it took everything he could do just to kiss me. Just that little movement was excruciating. It just breaks my heart to see him in so much pain. It is so hard to leave him there but I have no choice. I have to work and have no other options.
I do have a caregiver who stays with him when he is home and she will come back when Marc gets back home. He likes her a lot and she seems very good to him.
I will try not to be so delinquent in posting to the blog, I know everyone appreciates the updates. Please continue to keep Marc in your prayers.
