Wednesday, September 17, 2008

The Week in Review 9-17-2008

Summary of this week... The true meaning of exhaustion, the slow loss of focus, and I hope my shower drain continues to survive better than my washer did last week...

  • We're 14 weeks past the partial resection of my tumor.
  • 19 of 30 radiation treatments have been completed. The countdown has officially begun and now stands at 11. :)
Medically - Radiation is now at week four and the side effects are truly beginning to show their ugly head. The level of exhaustion is getting deeper and starting much earlier in the week now. Where I wasn't feeling a high level until Thursday, I am now feeling it as early as Tuesday. Mondays have taken on a whole new meaning to me as they are the only day that I truly feel great.

I continue to work part time but that is becoming more difficult by the day to do. By the later part of the week, it is all I can do to keep my strength up long enough to get through each day. My Short Term Disability was approved to continue my 4 hour days through October 19th but my request for information on finding something between that level and Full Time Disability has not been answered. Beyond that, the delay in getting my disability approved this last time, caused my paycheck to be incorrect. Luckily, John and I have enough put back that this delay doesn't hurt us but it is one more headache I've got to deal with when I really don't have the energy to do so.

Emotionally - I'm doing ok emotionally. I've given up on fighting myself about whether or not radiation was the right move. It was just not worth it any more to fight my intuition so I simply told my intuition that it is right but now it's too late so shut the heck up. :) Yes, sometimes I have to have these arguments... conversations with myself. So far it has worked so I'm not going to complain too much. The thing I have to remember is that only one entity knows if radiation was a good or bad move. He hasn't acted in either direction so I just have to give up my trust to him and hope that he wasn't talking to me through my intuition. We do what we have to, right?

I have struggled emotionally for a friend the past few weeks. A good friend of mine, whom I met through an online support group, is facing some very difficult times right now. Not only is she facing a possible regrowth of her brain tumor, but she began having seizures and then lost her job. If you can find it all in your heart to keep Nyckie in your prayers for the guidance of God as she and her family gets through this hard time... I would appreciate it. Nyckie... if you are reading this, I love you girl and I'm thinking about you constantly.

Mentally - I'm back into a rhythm at work so I am able/forced to exercise my brain more. I have also found the love of reading again. I just finished reading the "Twilight" series by Stephenie Meyer. It has really taken my interest and I know that makes John feel better because one of the things I have noticed since surgery is the lack of interest in some of the things I used to like. Such as playing Puzzle Pirates or the Sims. Not that it's a bad thing to not be infatuated with them but it scared him a little so he's glad to see me "in" to something. I also pulled out some of my "brain games" last week and that felt good. I'll admit that being away from them has been a bad thing for my scores are really low in comparison but at least I did them again.

I have been noticing since about Friday that my focus is beginning to slip a little bit again. Just little things I notice that just don't feel right. I'm sure it's caused from changes going on in my brain but if they get too much worse, I'm going to pull myself out from behind the wheel for the safety of others. For now I'm doing ok with behind the wheel as long as I have something to concentrate on at the same time as driving. (Singing with the radio, thinking up blog entries, etc...) We'll see how the last two weeks go.

This lack of focus is also why I haven't been updating my blog the way I've wanted. On my way home I'll come up with complete posts but by the time I get home I've completely lost my focus on it. *sigh* I hate that.

(This is my hair prior to it deciding to come out. As you can see, it had grown back in very nicely.)

Physically - Either I've gotten used to the swelling or it has been going down some. It doesn't bother me near as much as it had but I seem to be plateaued at a weight I'm really not happy with. I'm sure part of that is from the steroids and the weight you typically gain from it. Part of it is probably the limit on exertion I have due to exhaustion. Either way, as soon as I am feeling better from radiation, I'm going to get back into walking and maybe lifting weights within my limitations. I'd love to be lifting weights to the point that I can be carrying computers around by the end of the year. It may happen but I will build up to it very slow and cautiously. (This is what was left before I had John shave it for me. It looks much balder now but I haven't snapped a shot of it yet.)

I've dealt with A LOT of hair loss in the past few weeks. The hair loss doesn't really bother me as much as I thought it would other than it is all over the place and it is coming out in ugly patches rather than a whole area. This caused John and I to shave part of my hair so that it would be easier to put the cream they gave me on the the radiation burn that is showing its ugly head. Pretty much the entire right front side is gone and the left side is thinning out a lot. I haven't cut that left side yet but if it keeps going it's likely all to fall out anyway. We'll see how bad it looks when this is all said and done. Luckily, things have gone in such a way I can wear a wide headband and other than the severe lack of hair on the right side of the band, you don't even realize it's not my natural style. :) The worst of it is that I can't even sleep without waking up to a fur pillow and my poor shower pipes. I'm hoping they survive this. I've got a drain guard but I'm not sure it's catching all of it. *sigh* Anyone know any cheap plumbers? LOL

Exhaustion... you don't know the true meaning of the word until you can sleep 16 of 24 hours and still feel like you need more. This isn't the kind of exhaustion that is caused from sleeping too much. This is the kind that your body doesn't want to move without using a fork lift. By Tuesday I get the "I didn't sleep well last night" tired but come Thursday it's "But 12 hours isn't enough sleep for any normal human" exhaustion. Needless to say, most of my weekend is spent sleeping. The bad part of this is that Monday is a decent feeling day and I have a hard time falling asleep until a bit later. (Although I still get 10-12 hours of sleep that night.) Then Thursday rolls around and I can take a nap and still get 10-12 hours of sleep that night and wake up like I hadn't slept at all. This is one part of radiation that I won't miss.

Well, that's about all for now. There's more I could write but if I want to get this out, I'd better do this now. *Huggles*

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