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.
Today:
Hi,
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.
Rebecca
2 comments:
Rebecca, thank you so much for writing this. I will not blah blah about how great you are, but will say I love you and am sorry you are going through this stress and misery and trouble breathing. How frustrating it must be to know you are "supposed" to relax your body, so you will feel better, but at the same time, the way you feel makes you so tense and anxious! I know you're tired of knowing that we who read your updates are going through these ups and downs with you -- though our experience of them is of course SO much more contained than yours -- but I want to know how you are, and deeply appreciate your honesty and realness. I never feel bored or put off by or tired of what you write. I just, of course, wish I could make it better, and hope that expressing it and knowing we are out here caring does help some.
I even invite you to whine some, on your blog or to me personally. If getting some of it out with someone other than your family would give them and/or you some relief, go for it. I meant it. My email is rabbiwynne@gmail.org, or I'd be glad to call and just listen if you have the energy at any point, or whatever else might work.
I wish you and your family some of the light of Chanukah this evening, and over the next 8 days. May you sense some of its warmth and brightness, which is here even in the midst of these colder, darker days.
Love,
Bridget
Thanks Bridget. It does actually help for me to write this. In fact,the reason that I did not get the first part of the post out was because not long after I wrote it, I already felt a bit better. I have started expressing my emotions as they come up instead of bottling them up and remaining calm. I even yelled one of my kids this morning. It was in, I got it out, I feel better. It was even a reasonable thing to yell about. If I can stay in the moment and do that, then there is no build-up of frustration. I know you are there and am so glad of it. Thank you for your offer, it means a lot and I do know that you are there, thank goodness.
love love
rebecca
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