I thought we may actually escape with an uneventful week, but apparently that was not to be.
I believe I glossed over the worst parts in my last post, including the fact that Ben struggles to walk. This is something that came on in the hospital but we assumed it would pass. It has not, and seems to have gotten worse. He also continues to be exhausted and thoroughly drained of all energy. This is a cruel disease.
Saturday night seemed fairly tame, however, and Ben was sleeping when I left to pick Jaime up from work. She literally called for a pick up about 30 seconds after I had just taken a sleeping pill, so I madly dashed off to get her before the effect of the pill hit me. Jaime was happy and we chatted on the way home, and I went right off to sleep.
I’m still not exactly sure what happened, but a case of the “sads” obviously hit Jaime as soon as I fell asleep, and I was awoken by her crying by our bed. I had no sooner made room for her in between us when the worst pain imaginable struck Ben. I can’t even describe it – it was worse then anything that I have mentioned before. And believe me, there has been some bad pain.
This time it had nothing to do with his right side. The cordotomy was a success and he cannot feel pain on the right. This was all in his sacrum and it lasted for about 8 hours. It definitely warranted a trip to the hospital but I could not bring myself to force him back there when he had just made it home. And so we all cried, all night, until finally it passed and Ben fell asleep and slept for the entire day. Sweet relief for him.
On Sunday Dad and Kirby moved the recliner upstairs to our bedroom for Ben, so that he has the option of the chair or bed and the bathroom is there too. I bought a second recliner on Monday (to be delivered tomorrow) to be put in the family room, so that Ben also has a place to sit downstairs when we have to go for appointments and he needs a break before going back upstairs. Mainly his “suite” is now our bedroom, and we have set it up with two extra chairs for guests. Its a bit strange, having visitors in our bedroom, but it works out better for Ben. Connie and Kirby came by for a visit last night and I’m sure the neighbourhood would be abuzz with gossip if they knew that another couple joined us in our bedroom with wine. Lol. I didn’t take pictures. Haha.
Today we went back to VGH to meet with the doctor at the pain clinic. We had to take the wheelchair, which Ben hates. To make a long story short, the doctor is ordering an urgent MRI tomorrow to see if this effin’ disease has crept into Ben’s spine and is causing his weakness. There was more discussion of radiation and blah blah blah. After awhile we both want to scream “STOP!” How much more is Ben supposed to endure?
Our drive home was, well, sad. We talked about the possibility of the worst outcome, and how to talk to the kids. And how it sucks that this is happening at Christmas, or at all. And we cried. And cried. And cried some more. And then we laughed a bit and picked up sushi (for Ben, not me. I think its gross.)
We went home and Mom and Dad came over and joined Ben and Raegan for the evening while I went off to spill my guts to the psychologist and hope that this time he might have figured out a way to solve this problem. He hasn’t. But the four of them enjoyed themselves while I was gone – talking and laughing until Ben fell asleep again.
That is where we stand for now, waiting for another MRI that Ben will have to endure (he is extremely claustrophobic) and more potentially devastating news. In the meantime I am going to go and crawl into bed with My Love and snuggle him tightly, and hopefully dream about better days.