Hello all! I hope those of you who celebrate Christmas had a merry one, and those of you who don't, I hope you had a lovely December 25th.
I thought I would take some time to update you all on the past few days so as not to worry anyone any more than I already have.
The morning of Christmas Eve was similar to the day before, my love had a little confusion, though it was substantially less than Saturday afternoon and evening, and was still having a lot of trouble moving. My love's legs simply didn't seem to want to work. So we called the oncologist's office to see if they were open and see if there was anything they could suggest. They were open and my love's oncologist was even there when we called. We left a message stating what had been going on and asked what could be done. Over an hour later we got a call back from his nurse saying that she had spoken with him and he said there was nothing more he could do until after he saw the results of the MRI scheduled for Thursday. We told the nurse that we didn't have an MRI scheduled for Thursday, my love had a spinal tap scheduled for that morning, but the spinal MRI had already happened and the oncologist already had those reports. The nurse then said he must have been talking about the spinal tap and there was still nothing he could do until after that time, so he would see my love on Friday and go over the results of that test.
Needless to say, we were quite frustrated with that answer. It's easy for him to say there's nothing he can do until Friday, he isn't the one here watching my love struggle to move and having to support my love when my love's legs won't. We tried calling other members of my love's treatment team to see if anyone else had a better answer than see you Friday, but we weren't able to get a hold of anyone with the holiday. So we decided to call back and ask for the oncologist to speak to us directly rather than through the nurse. We waited a while, then got a call back from the nurse once again stating that the oncologist had already left for the day, but she had spoken with his physician's assistant and she had said that she didn't have time to see my love that day, so her suggestions were that if we felt it was an emergency situation we should go to the ER, otherwise, she would suggest upping the decadron (the steroid we'd be fighting so hard against because of negative side effects). We discussed these options and didn't feel like it was a life threatening emergency or anything and that if we went to the hospital, they'd likely try upping the decadron anyway, so we asked how much to increase the dosage. We were told to up it from 1 mg twice a day to 2 mg twice a day, which my love had been on a month or so ago.
So, that's what we did. We asked how soon we would notice a difference if the decadron was to help and the nurse said she thought we'd see a difference the next day most likely, but we weren't honestly sure how familiar she was with the drug. So my love struggled throughout the day on the 24th, sleeping a lot, not feeling well, and not moving well. My love really wanted to go to the Christmas Eve service at my love's church, but didn't feel well enough and didn't think it would be a good idea to push it. It was really sad and hard for my love to miss the service, but my love's mom and I tried to make up for it as best we could by staying home with my love and singing Christmas hymns and reading Christmas stories. We even baked some Christmas cookies as after the service they have cookies available.
Then came Christmas day. The morning started out fairly similarly, with my love being very tired, not feeling very good and such. But by late morning my love got up and sat in the wheelchair and played some cribbage with the family. My love had not been out of bed much the previous two days because my love didn't feel well enough, when sitting up the world spun and my love felt nauseous, so for my love to get up and play cribbage was fantastic. Sadly, that wore my love out a bit, so my love was a bit too tired to eat Christmas lunch with us when it was ready. But within an hour after we finished, my love was feeling better and got up and sat in the wheelchair and had a good sized Christmas lunch at the table! I cannot tell you how exciting this was. It was a fantastic Christmas gift to all of us to see my love have a better day. And things continued to be much better than the previous days. My love ended up eating at the table two more times on Christmas day.
Today has been a pretty good day for my love as well. My love has eaten at the table a few times and even did some occupational therapy exercises today. My love is so determined and persistent and I am very proud of my love. Early tomorrow morning is my love's spinal tap, which we are all dreading because the test itself is rather terrible to go through so I understand. My love had one in middle school and describes it as one of the worst experiences my love has gone through. So yeah, it sucks that my love has to go through it again. Hopefully they have somehow improved the process since our middle school years.
With everything that has been happening and is going to happen, I have a lot of fear and uncertainty, but I continue to hope and pray for the best. I love my love very very much and want to support my love no matter what, I just want the "no matter what" part to be painless for my love.
I will try to keep you all updated on the spinal tap results as we find out info. Feel free to contact me if you get concerned or don't get info as quickly as you'd like. Hugs and love to you all! And thank you for your continuing love and support. It means the world to me, my love, and my love's family.
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