I wrote this on Nov 26th, last week I guess:
I am scared. There I said it. I am not scared of being dead. I am scared of this damned process I am going through. I dont even know what it is. I dont know if I am dying quickly or not. I know I feel like crap most of the time. no energy, grumpy, hard to breathe, out of breath from moving from one part of the house to another, bored, sad, wanting to do so much and not being able to take care of the basics, angry.
I never know how long each phase of my health/sickness is going to last. I thought I would be done with this already, so I was waiting it out. But it is not going away. I changed the chemos. It took a while, but usually when I start a new chemo, I start feeling better quickly. The breathing, they say, is not related to the cancer. It seems I have created so much stress in my body, that I cannot breathe. That happened before. After moving to Texas, I got asthma. This time, my body went whole hog and it is asthma and I am so tense in my upper body that there is literally no room to breathe. It sucks.
I hate watching you all watching me go through this. It hurts me to see you suffer. But I dont want you to hide your feelings, just as much as I need to not hide mine from you. I am writing this as part of a process to work through the anxiety I have created and release the tension, so that I might breathe well again. blaah blahh blahh. I do not need an outpouring of 'you are so great' and I do not need you to hide your feelings. Just be yourselves and I will try to be true to my sad and miserable self right now. It is a phase. This too will end. As it has before. I will not always be this grumpy. But I have to go through it despite how much it sucks.
In the past, I have called the world and reached out and griped and griped and you have held me. This time, I seem to have gone inward and just dont have energy to call anyone. I know you are there and I know you are holding me, but I have so little social energy that I dont even know what to say. I dont have a lot to give, emotionally, socially.... What I have, I give to the 3 people living through this day by day with me. They are all real troupers. It really sucks for them. They are constantly taking care of whiny me. Just because you have not seen me whine, does not mean it does not happen. I just keep it in a small sphere and they get most of it.
I feel like they are going to suffer more than me. Andy has to deal with everything AND hold down a job. He does so much-physically, emotionally, mentally. It is really unbelievable. I get to lay in bed and not feel up for chores. I have dropped my responsibility to the household a while ago. If I do something, it is a bonus. And I do things sometimes. I do clean a bit. I do cook a little. I can take care of my food most of the time. I can garden a very little. I can do an errand or two here or there. I am not totally incapacitated. Which makes it even more confusing. I look good. I pretty much sound good. I can get out. So what the heck is the problem? It is that I cannot do it very much and we never know what I am up for or when. There is no planning. There are no people over for dinner. Vacations...not likely...Sledding with kids, no way... It just sucks.
So, I have had some good cries and yelling stomping fits and that really helps. I am doing better. All of the doc's agree. I do not know what my tumor marker is yet from having gotten this chemo, but I am healthy enough to start again. yippie (not). I am going to do my best, even though I am a bit nervous about it.
I dont think we are going anywhere for the holidays. If we do it will be a spontaneous road trip. I am in a place now where I think I can live with this again. Not constantly aware of dying and panicking about it. My breathing is still tough. Everyone agrees (all types of docs) that it is not my breathing. I have had one possible explanation of it having to do with tension in my fascia being exaggerated by my body being sick. Like if you have a stiff neck, then you get a cold and the neck feels a lot worse. The cold exaggerates the ache. So the fact that my body has cancer makes the tension worse in my upper body and chest, because that is where I hold my fear and sadness. I am getting some of it out and my whole upper body releases. It feels great for a couple of hours, then tenses up a bit again. I am working on it...
Love to you all.