Tuesday, June 7, 2011

Update - I need some Energy

I have no excuse to have not been sending out updates other than just not thinking about it. My days all seem to run into each other. I honestly woke up this morning asking John why he was getting up. I thought this morning was Memorial Day. *Shakes head* It's just darn hard trying to keep the days straight. I think I'm one of those that is just meant to be on the go working so that I can keep my head on straight. Even in high school I had a ton of things going on each day besides just school.

  • It has been 4 years since I was hit with a baseball that led to the discovery of my brain tumor. (It was in June or July but I don't recall the exact date)
  • It has been 3 years and 8 months since I completed External beam radiation.
  • It has been Just shy of 4 years (Friday is 4 years) since I had a partial resection (more partial than we realized at the time)of my grade three tumor.
  • It has been approximately 5 months since my second resection, shunt insertion, and the start of a month of chaos.
Medically - I think I'm starting up a new record, I have managed to stay out of the hospital for an entire 5 months now!!! One more month and I'll be a whole half a year! According to my local doctors, my last MRI shows no change from the previous one in March. I see my NeuroSurgeon in July to talk to him about what he feels. The shunts still appear to be working great *Knock on wood*.

Emotionally - Several things have fallen nicely into place and that is keeping me emotionally stable at this point. A big emotional help was being approved for Social Security Disability. It helps a lot to actually have money coming in again. We had been preparing to lose some of my pay anyway but medical expenses started us off on the wrong track. When my disability through work expired at 6 months we were dependent on John's paycheck and what was left of our savings, post medical. It's nice to be able to breathe a sigh of relief and try to start building our savings back up for the third time in 4 years.

I really need to be thinking of things for my son and I to do this summer. We are at each other's throats being home by ourselves every day. Boy was I wrong when I said that "things will get better when I'm able to drive and not at home by myself all day." I failed to calculate in that my son is now a teenager and doesn't want to do anything with mom. UGH.

Even though my former company is officially closed, I have seen several of my former co-workers at various lunches and gatherings so that has helped keep me on a decent emotional path.

Mentally - I truly think that mentally I'm as good as I will get this time around. If it weren't for the horrid short term memory, it would be easy to work through but when you head to town and forget what you have to do while there, it's not a good thing. Thank God for my iphone!!!

Physically - I still have a long way to go to building myself back up. I started walking again but I'm nearly dead the next day. My physical strength is lower than I ever remember it being. I don't allow myself to lift anything over 10 pounds because I don't trust myself doing it and it pulls. I don't want to do any damage to the shunt and have to start over. I will discuss this will my NS next month. I also continue to struggle finding clothes for the lower half of my body. I am actually still at a lower weight than I was before I lost all the weight I did but it is literally all in my stomach area. I might have to stop by Goodwill next time I'm in town and see what I can find. I want to get back down to the size I was after I lost all the weight so I don't want to buy a bunch of pants in a bigger size if I don't have to.

Chemo - My fourth chemo round when great. I didn't get sick at all and other than being very tired I wouldn't have even known I was on it. I've decided that there's something about the odd-numbered(1 and 3) rounds that don't agree with my body. The 1st and 3rd round I got sick the 2nd and 4th round I didn't. I start chemo again next week. However, instead of it being my 5th round... I'm going to call it my 4th round to see if I can trick my mind/body into not being sick. Wish me luck!!!

Family - My son managed to pass the 8th grade and will be in high school next school year. It will be quite the change for him but I hope it is a positive thing. I think being in a larger school may help him as long as he keeps focused and gets his homework turned in on time.

Relay is next week as well. It will be different this year. It's the first time I will not have my own team. I decided last year that being a captain was just too much on me. I'm really glad I did because there's no way I could have done it this year. I look forward to Relay though. It should be fairly quiet for me this year. Thank you to everyone who has donated to me. It's not too late to donate. Visit http://main.acsevents.org/goto/amy79a if you wish to donate. Any support is greatly appreciated and will help us try to put an end to cancer once and for all.

Well my brain is telling me it's time to either nap or stop working it so I better wrap this up now.


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