07-18-2011

I was going to post yesterday. But it was a hectic crazy day. Jeremie's poor mom has shingles. And she is down for the count with that nasty virus. That disease has literally made her bed ridden for the last two weeks. I feel so bad for her. Plus I had this nagging feeling that I would just end up posting again. And really why add to the writing...you know?

Jeremie has had these tumor like growths popping up on his body over the last several months. Usually they are small, around a 1/2 centimeter in diameter and just under the skin. Most of them have been on his arms. Well about a month ago two big ones pop up on each of his lower legs. One on the front right of his right leg and the other one in the middle of his left calf. The right one is not movable and feels like it is attached to something deeper. They have worried Jeremie and I as his legs feel numb and weak. We of course have brought these up. But again, kind of assumed what they were and that we really weren't going to do anything about them. And in all reality there isn't a whole lot to do about them.

Saturday I felt a small one on his rib cage, and on Sunday I could feel a large on on his left chest, with something underneath it as well. His pain since Friday night has increased to out of control levels. We tried adding a pain patch on Friday night and Sunday night a higher dose pain patch. Today, Monday it was VERY out of control. Called our Doc this morning. Jeremie was going to start his Dacogen treatment today. We went to the infusion clinic to have Jeremie's lab's drawn and my sweet nursing buddy was there. I kind of snagged her and asked if she could call Dr. Lemon to get something for Jeremie's pain. So he received pain medication and then we were off to see Dr. Lemon.

So the easiest course of action and quickest, is to have Jeremie admitted. YUCK! Seriously was working really, really hard on making that NOT happen. But oh well. Jeremie is going to have a CT scan of his abdomen and chest. And he was started on a pain pump (again). This is the part that is the hardest. I'm definitely experiencing some PSTD at the moment. I feel like we are back on the super scary pain pump road that wasn't working so well.

We are both so scared right now. We have had such fun over the last several weeks. And we just aren't ready to give that up. I'm scared about what I need to say to my kids. We keep talking about everything, but I just haven't let it escape from my mouth that it really might be getting close to the end. I of course haven't had a moment of letting that thought go out of my head. But it is different to verbalize it. It makes it a bit more real. I'm really tired of this reality.  But I'm also getting to the point of wanting to hear some real, live possibilities of what our future holds for us in the next day, week or month. I truly have no idea what to expect.  And trying to nail down what is exactly going on with Jeremie is liking holding on to jello. I know the man has leukemia. But how do these tumors play a role? Do they shorten his time? Are they going to be decreasing quality of life? Is there anything to be done about them? And for the first time I am desperately wanting to know what to expect. Humph! There got it out!

Can we go back to la la land for a minute? I just want to be at home with him. Out of pain. With our kids. Going through our life. I'm so tired. And I just can't imagine how tired my Jeremie is. He just doesn't want to hurt anymore.

Well I wish I could write that everything works as it should, and he is just going to survive with leukemia and we could go about our life (just adjusted), and watch our babies grow together. And make fun of each other when we are really old and wrinkly. Unfortunately he will be forever beautiful, and non-wrinkly. I don't think even Shakespeare could right a tragedy so sad as this.

Sorry to leave on a sad note...off to help Jeremie choke down some barium...

Love to all...

Cori