Moving Forward…Somewhere

Posted: February 16, 2012 in Uncategorized

I've been told more than just one time in my life that I'm goal oriented. Point me in a direction, with an ending point, and I'll get there…nothing will stop me. I'm determined and really, I don't lose focus easily. Unless, I feel like there is no path to reach the goal in mind…or in this case, there is nothing I can do to make this stubborn tumor go away. I realized today that this coming Monday, originally, was the day that I was going to meet with the team and discuss where we were going…hoping radiation was doing its thing as planned and we were simply “cleaning up the leftovers” as I was told when this 2 week plan unfolded. Tomorrow, I'm meeting with Dr. A who is the head of the team to discuss where to go from here, being that the frontal lobe tumor has changed shape and not shrinking.

I've been in a mood all day really…not good for me. Steve has done so much to help make me smile…cracking jokes, watching tv shows (side note…I am past the point of wanting to watch tv…I could care less what is on…I'm Ted OUT!!)…I know it's me…I've been doing the same thing for just a bit too long. I haven't been in my office, I haven't really been in my car, I haven't written lessons, I haven't seen my church kids for almost 2 weeks now…I really miss my job and getting out of this house! Granted, I feel like a ticking time bomb the way my stomach is turning…but I'm really not the type of person to stay at home a lot. I love my family…but seriously, something has to give or I'm going to go crazy!

So…I plan on having a little heart to heart with Dr. A tomorrow to get a handle on where things are headed and how I can get out of this house…even if it's only for 1 hour! Maybe he will let me go to church on Sunday (I know, a stretch…but I REALLY miss my PBCC family).

I've been in intense CIDP related leg pain today. I've been cautioned by my neuro team (yes, I'm too good for just one neurologist anymore) that radiation and chemo can really amplify the side effects of these treatments, as well as make my CIDP symptoms worse temporarily until they get better. This is exactly what's happening. The only medication that really works to relieve the pain without adding nausea is oxycodone. I've refused this medication many times because it was hard to quit a few months back after my pacemaker procedure…it's highly addictive and I don't care to add yet another hurdle to my track. But I might need to take one dose tomorrow during my treatment…just for some temporary relief.

On the positive side, I did sleep in until 11:30AM today, even with the leg pain…I went to bed around 2am…but not a bad trade-off. I also gained a pound! It truly proves the theory what goes in doesn't ALL come out…something is getting in there! I'm hoping that stays on for tomorrow…I'm wearing heavier clothes just for that hope!

My mind seems to be running all over the place tonight, so I'm going to end here. I'm sure I can fill in any extra thoughts tomorrow!!

Any fun ideas for something to do this weekend…BESIDES watching tv???

  1. debra says:

    It is okay to take one exycodone to help with pain. If you were taking them daily, yes, addiction, but just one, please don't suffer. Take the one.

    You don't know me but I read your blog because I too have a brain tumor that has spread. I am not getting any treatment, so reading about how yours is going, helps me.

    You are a strong lady. Do you ever get tired of hearing that 🙂 ? i do. Sometimes we don't want to be strong, all the time. I just wanted to tell you it is okay to lock yourself in the bathroom, and just cry. Let it all out. It is a great stress releaser.

    Do you enjoy reading? I don't know if the app works for ipad, but amazon has an app free to download, and you can read books on your ipad. Many books are free, the “paid” ones average around 4-8 dollars.

    I wish I could attend church and meet you. I am unable to attend church. I am not saved or a christian but i know God is here.

    Is it possible for you to go to the beach? A quiet one is Canova Beach, Eau Gallie Blvd will take you straight to it, and for me, just sitting and watching the waves, listening, gives me much peace and I feel God there.

    I hope you are better soon.


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