This post is more of a rant than anything else. I just need to get some stuff out and by writing it I’m hoping I will help get it off my chest. Also, if anyone else, who feels similar, happens to read this they will know they aren’t alone in their feelings of helplessness at watching someone they love suffer. I try not to just toss everything out because I don’t want Rich to worry but he wanted this blog to show both sides so here is my side of today’s news. (Rich, when you read this, please don’t worry. I’m frustrated but fine. I love you). I try to stay positive and I try to see the silver lining. Some days that’s easier than others and today has not been one of those easy days. It’s days like these that I ask myself “why”.
We went to Yale today and they are now treating Rich with a high dose of steroids for colitis. He has been taken off Nivolumab. A PET scan is scheduled for the beginning of May to see if there are any active tumors so we will know more at that time but we are hoping for a clear scan because as of now there isn’t anything else for him to try. He is BRAF 600 negative so targeted therapy is out. Also, we are hoping that the steroid dose he was put on today will help with the colitis without causing more issues with his diabetes.
The steroids make his glucose spike and no one seems to know how to manage his diabetes. He’s been trying to figure it out by himself since November and has had trouble. Steroids make it much harder. He doesn’t know how much insulin to give himself and how much to eat while on the steroids. He has to be on them for a month. There are few foods he has left to eat because the combination of diabetes and colitis takes away the ability to eat most food groups. Avoid fiber and dairy with colitis, eat a bland diet but avoid carbs because those raise his sugar. He has melanoma, diabetes and colitis and he can’t even eat what he wants and when he wants anymore. Such a simple thing that is usually taken for granted until you can’t just have a meal when you want to and other times you are forcing glucose tabs down when you don’t want to. Being able to eat what and when you want to is a huge part of life.
And of course, being taken off the immunotherapy and not having a plan B is sooo scary that I can hardly even process that information fully right now so I’m going to try to stay positive that that PET scan comes back clear. I guess that’s about all the positivity I can hold on to today. At least it’s a little bit.
I guess it is normal for people to ask themselves “why”. “Why did this have to happen?” “Why did it happen to Rich?” There are times that I want to scream that at the top of my lungs in hopes of hearing an answer. I want to know why because if I know that maybe I could come up with a plan to fix it but the reality is that I know there isn’t an answer. There just is no reason why such a wonderful person would have to go through all of this. It doesn’t make sense and life seems so unfair. No matter how I try to see it from a different angle I just can’t. It’s unfair and it sucks and I can’t fix this for Rich and I hate the fact that I can’t.