Life in the shadows
Been trying to sort my head out .. again. Saw a counselor to get a second opinion, he says I'm not crazy and not psychosomatic. That's a start.
Have struggled with how to approach this pre-cancer thing. My biggest fear is that any surgery major or minor will result in loss of function. Right now in my head loss of function = loss of job and I am in no position financially or mentally to deal with that.
Also since two reputable doctors are coming at this from such very different positions, I am just caught off kilter. Doc A has definitive proof of his position but it doesn't explain my issues and so if I do the minor surgery now it doesn't solve any of my current problems and I may be looking at major surgery in the near term. Not good.
Doc 2 has a more plausible position relative to my symptoms so I feel that long term the major surgery will solve multiple issues and give me a better chance moving forward. But this is major surgery.. a big deal with serious implications given my current support systems (or lack thereof). I would feel so much better going into this if we were sure that what we are trying to fix is indeed the problem. So I guess I have to test and see what comes of it.
This last round wore me out again. Not looking forward to the tests but will try to do them soon.
Been thinking really, really hard about how I feel about all of this. Been struggling to adjust to life with CFS and Lord knows I'm not in a happy place yet. I cant help feeling like my life has derailed for no good reason. I believe in living life OUT LOUD!! I try to understand folks who don't have this desire to go full throttle, but really I don't. Its hard to see the worth in life lived in limbo.
I have no desire to shorten my journey here by even a day. But I also have no desire to lengthen my journey with CFS.
So what happens after surgery .. I'm weaker, more tired, more broke and no better than I was before. I will still have the threat of cancer hanging over my head, my body is systematically destroying itself. It is a slow process but sure. Its just a matter of time before the cancer takes hold somewhere else.
Do I want to spend the rest of my life dodging bullets? And to what end? So I can lie in bed and watch life pass me by day after day, year after mind-numbing emotionally exhausting year?
Then I got a call from the school nurse. My son was having chest pains. In all my ruminating I lost focus on him, but he walks this road with me and when I am stressed so is he. When he stresses he gets sick. So I snuggled him up in bed with me and we talked .. it broke my heart to have a 13 year old talk to me about how stressed out he was, how overwhelmed he felt by all his responsibilities.. taking care of himself taking care of me, managing the demands of school .. feeling like HIS life had run off track. When we spoke about surgery and the possible outcomes he was clutching his chest and writhing in agony. He tries to hard to be brave, but really he's just a scared kid dealing with way more than he should have to.
That was when I remembered why I need to keep dodging as many bullets as I can with as much grace as I can muster. Because I do not walk this road alone. Because this decision is not about me only, it is about everyone who cares about me.
So I'm resting up, looking at those dodging shoes. Gotta lace em up soon...
Have struggled with how to approach this pre-cancer thing. My biggest fear is that any surgery major or minor will result in loss of function. Right now in my head loss of function = loss of job and I am in no position financially or mentally to deal with that.
Also since two reputable doctors are coming at this from such very different positions, I am just caught off kilter. Doc A has definitive proof of his position but it doesn't explain my issues and so if I do the minor surgery now it doesn't solve any of my current problems and I may be looking at major surgery in the near term. Not good.
Doc 2 has a more plausible position relative to my symptoms so I feel that long term the major surgery will solve multiple issues and give me a better chance moving forward. But this is major surgery.. a big deal with serious implications given my current support systems (or lack thereof). I would feel so much better going into this if we were sure that what we are trying to fix is indeed the problem. So I guess I have to test and see what comes of it.
This last round wore me out again. Not looking forward to the tests but will try to do them soon.
Been thinking really, really hard about how I feel about all of this. Been struggling to adjust to life with CFS and Lord knows I'm not in a happy place yet. I cant help feeling like my life has derailed for no good reason. I believe in living life OUT LOUD!! I try to understand folks who don't have this desire to go full throttle, but really I don't. Its hard to see the worth in life lived in limbo.
I have no desire to shorten my journey here by even a day. But I also have no desire to lengthen my journey with CFS.
So what happens after surgery .. I'm weaker, more tired, more broke and no better than I was before. I will still have the threat of cancer hanging over my head, my body is systematically destroying itself. It is a slow process but sure. Its just a matter of time before the cancer takes hold somewhere else.
Do I want to spend the rest of my life dodging bullets? And to what end? So I can lie in bed and watch life pass me by day after day, year after mind-numbing emotionally exhausting year?
Then I got a call from the school nurse. My son was having chest pains. In all my ruminating I lost focus on him, but he walks this road with me and when I am stressed so is he. When he stresses he gets sick. So I snuggled him up in bed with me and we talked .. it broke my heart to have a 13 year old talk to me about how stressed out he was, how overwhelmed he felt by all his responsibilities.. taking care of himself taking care of me, managing the demands of school .. feeling like HIS life had run off track. When we spoke about surgery and the possible outcomes he was clutching his chest and writhing in agony. He tries to hard to be brave, but really he's just a scared kid dealing with way more than he should have to.
That was when I remembered why I need to keep dodging as many bullets as I can with as much grace as I can muster. Because I do not walk this road alone. Because this decision is not about me only, it is about everyone who cares about me.
So I'm resting up, looking at those dodging shoes. Gotta lace em up soon...
Replies
feel the need to pray and think about this a while, sending soft hugs......prayers for your well being and for your son\'s well being too..........i\'m a little confused...but i\'m really tired.......i thought that you had a pap test, that they told you there were precancerous cells.........that you were going to have a minor procedure to remove the cells followed by check-ups to make sure every thing is well with you in this regard. i may be all mixed up.......i went through this in my twenties, had the procedure, has the follow up care proactively and it all went very well. Maybe what you are dealing with is very different and I\'m confusing things.........sorry, forgive me, I\'ve taken a step or four backwards this week. sleeping a lot, high levels of pain/inflammation and such..........but i can pray.........and pray i will..........soft hugs. r
Wow, Max ,that\'s alot of stress. You seem like someone who is able to look at the options realistically. I can relate to being a single parent with CFS,although my daughter left home some years ago. Your job is a big stressor also and I can totally relate with wanting to live out loud. I have always been more intense and active than those I have met.
I suppose it is becoming rather common for people to undergo treatment for pre-cancerous conditions. It is obvious that the fear of the Big C will loom, however, is it possible to consider that it may not return?
I really feel for your son, the way you described his reactions. But I have to tell you, part of me was thinking, it is SO GREAT that he can be honest with you and you with him. I myself and many people I know have not had that from their mothers and suffered greatly from it. We cannot prevent their trials, but if you show that you listen and care, THAT IS A PRECIOUS GIFT you give them.
You are in my prayers!
Yep, you\'re right about dodging those bullets. You need to shoot back every time you get a chance, too! I know this is extremely difficult for your young son to bear, but he is a blessing to you ... and to us.
Hey max didn\'t you already have the tests and they showed precancerous cells? Maybe my brain fog is mixing things up.Or the tests you\'re having next are they for something else? I\'ve mixed it up somehow in my tired brain, so can you let me know please.I think you should just go one step at a time, treating the immediate problem, and don\'t even think that you\'ll end up with cancer . It\'s just fear creeping in there.So sorry your son is feeling stressed about it all, it\'s a lot for him to carry.I understand your concern about losing income etc, ,however the first procedure is minor and I don\'t think it will have any huge impact on you.Heavens I really hope not.Have they booked you in yet? Thank goodness it is treatable and the sooner the better for sure.So sorry you have all this added stress, having to struggle with cfs is already enough for you.Hang in there, love and healing, Di xo