We have a treatment plan, but...
So we went to see the new rheumie yesterday, and I liked her immensely. We talked about M's treatment options. Basically, she wants to start him on low-dose chemo called Cytoxan for a year because of the brain and kidney involvement in his lupus. He probably won't have side effects like hair loss and vomiting -- for lupus, it's basically about a fifth of the dose they use for cancer -- but of concern is his fertility. There's a chance he could become sterile. So we're going to bank beforehand. He also needs to be on lifelong Coumadin, because he is prone to blood clots, and that means lifelong blood monitoring. We're both still reeling from this. M is tired, frustrated, angry and can't understand why he can't just stay on Pred forever. As doc said, "Pred starts out as your best friend but winds up being your worst enemy."
Where I'm at emotionally is that I feel glad he has a treatment plan that seems less scattershot and more regimented, but the fertility stuff is just devastating. It's not ironclad that he will lose it, but there's always the chance. I want to read and know and understand, and part of me wishes I could just love him enough, hold onto him hard enough, to protect him from all this. But I can't, and that hurts. I've been crying since yesterday, including in the office, which is oh-so-unprofessional. I talked to my boss today about it, and she felt really bad.
Friends of mine invited me to dinner tonight, and my first instinct was to say no, I have to drive M. But you know, I need a night out. And I'm going. So I asked my MIL if she could take him home, and she will. I'm looking forward to a "normal evening," whatever that is.
I know things will be OK eventually, but I am sad. I feel like this shit will just keep going on and on, and when I recover from one blow to us, to his health, to all of it, another one puts me on the fucking floor. I feel like I'm not strong enough, like I disappoint him with my emotions. I want to live normally again. Is that too much to ask?
I'm sorry. I'm just very sad.
Where I'm at emotionally is that I feel glad he has a treatment plan that seems less scattershot and more regimented, but the fertility stuff is just devastating. It's not ironclad that he will lose it, but there's always the chance. I want to read and know and understand, and part of me wishes I could just love him enough, hold onto him hard enough, to protect him from all this. But I can't, and that hurts. I've been crying since yesterday, including in the office, which is oh-so-unprofessional. I talked to my boss today about it, and she felt really bad.
Friends of mine invited me to dinner tonight, and my first instinct was to say no, I have to drive M. But you know, I need a night out. And I'm going. So I asked my MIL if she could take him home, and she will. I'm looking forward to a "normal evening," whatever that is.
I know things will be OK eventually, but I am sad. I feel like this shit will just keep going on and on, and when I recover from one blow to us, to his health, to all of it, another one puts me on the fucking floor. I feel like I'm not strong enough, like I disappoint him with my emotions. I want to live normally again. Is that too much to ask?
I'm sorry. I'm just very sad.
<< Home