Going to try real hard to get this post done and keep it coherent.
I feel like I have fallen into a hole and I am just waiting to hit the bottom only it doesn’t seem to be coming. I just keep falling.
Yesterday the surgeon came in and gave us some very tough choices. We could continue with the surgery with the extra risks of the blood clots, say no to the surgery and try ccnu chemo with only a 13% chance of it being helpful. We immediately chose the surgery. There was still a chance that he couldn’t do it. So my wife and I had a hard talk. We talked about the third option. The one where we say enough is enough and do nothing further. It was hard and there were a lot of tears but that became our second choice. Luckily after hematology came by surgery remained an option and that is moving forward on Monday. After surgery she will enter an immunology study and get the one that ends in a 1. Hopefully that goes well because it is the end of the line for her. She can’t handle much more of this. She will probably have to have a transfusion before surgery because her hemoglobin is back down to 8.
So today started out not so good with the 10 min focal seizure. The weakness on her right side is now very noticeable in her face too. Her talking has declined. It took quite a bit for her to tell me she wanted another blanket. She kept telling me “cover all over” and I kept saying “you are covered all over”. It took a bit and a few deep breaths but we got there. I now have to feed her and she has to use a bedpan. The feeding is mainly because she can’t bend her left arm because of the IV, though I think I would still be doing it since she is right handed. This is the stuff that makes me feel like I maybe getting a glimpse into the future when the end is near. She has been putting up with a lot because they only have her left arm for the IV, blood pressure, and to draw all labs from which are happening every six hours.
Today did have a positive though. Her mom and 3 of her sisters came to visit. It was short but nice. Her sisters were visibly upset when they left. It is hard for them to see another sister like this. They lost their baby sister to retinoblastoma at the age of 11, she was born with it.
Tomorrow should be good, daughter and granddaughter are planning on visiting. She will bring me my meds so that will make things better for me.
In all of this it did not help that she had a roommate that would scream for help or the nurse. They finally moved her to a different room last night. She just got another one a bit ago. So far all is quite.
Thank you for taking a walk with me.