Thursday, September 24, 2009

The Month in Review... September

I have been a bad blogger this month...

  • I am 15 months past the partial resection of my malignant brain tumor
  • It has been 12 months since I completed external beam radiation
  • It has been 3 months since my first complex partial seizure and 78 days until I can drive again.
  • It has been over 2 years since my brain tumor was discovered
Medically - I apologize greatly for not getting the update on what happened at the Neurologist out here sooner. I've just been busy and tired and the combination of the two things just do not bode well for writing. Basically, the neurologist worked with John and I very well and understood where we were becoming frustrated. He told me to just work with reception and him rather than having to work with the nurse so much. (So far this has been easier said than done.) I told him that typically a malignant tumor is watched every three months and with all the changes that had taken place I thought we needed to keep a closer eye on it. He agreed that we would do another MRI in October and determine how often to go from there. He was pleased with the medication for the seizures and agreed we could go off the medication I had been on for the trigeminal issue since the Keppra should so the same thing. I am no off of this med. Overall, John and I felt a lot better about working with him and if I can avoid his nurse, I think we will be in good shape with him. Although, I will still be seeking a NeuroSurgeon's opinion as well as getting acquainted with a neuro-oncologist just so I'm not scrambling if something does go screwy. He also gave me a prescription med to try for my headaches when they get in that "horrid" range that would not be as harsh as the ibuprophen. Surprisingly enough, I have only had two hit that range and I was away from the med both times. Do you think it was possibly stress over dealing with his nurse that was causing them? *rolls eyes*

I still have not gotten with my first NeuroSurgeon on the insurance issue. I really need to just bite the bullet and call them. *Sigh*

The Psychiatrist's office is working on getting my diagnosis changed to a medical diagnosis. Hopefully they have that sorted out in the next few weeks.

I can't really think of anything else other than just being really tired over the last few weeks. He said that's common with the meds so hopefully it will improve as my body adjusts to them more.

Emotionally - This has been a better few weeks emotionally. The anxiety has eased and other than dealing with issues related to my son and his behavior, other areas have been doing pretty well. I have found I'm a lot more on edge emotionally but I think it's just because of being tired all the time and just overall stress. Maybe if I finally get the NS called to sort out the insurance stuff, I can work on reducing the stress level I have right now.

Mentally - I am hoping at least for now that things have stablilized a bit in my mental functions breakdown. I haven't noticed anything new and I have actually been able to work over the past few weeks on some of the things that were declining. If this thing wants to take away my mental advantage, it is going to have to work harder than that! I seem to have noticed an improvement when I went off my second medication. The neurologist said the "decline" was likely from the medication so maybe he is right and it wasn't just that I was on the meds but the combination of the two causing it. I can only hope!!!

Physically - I have seen a HUGE improvement with the headaches and have not had to take ibuprophen in over two weeks. Honestly, I'm not taking the Tylenol anymore either but I am on some cold medicine with acetaminophen in it to combat my allergies/sinus that is trying to break over the edge and act up. I think I could probably go off the Tylenol entirely at this point but I will do it gradually after I go off the cold meds.

Really, physically, my biggest complaint is the tiredness. I'm sure I'm just overdoing it. We are busy at work and with John working longer hours, I have to try to do more including handle our son's attitude spells and "not wanting to do homework". Honestly, trying to convince him to do what he HAS to do is harder on me than physical work. It takes half as much mental work to wear me out as it does physical. I think that's just a part of my new normal I need to get used to. Of course, you hit the "during the week 9.5 hours of sleep isn't enough yet on the weekend I'm wide awake after 8" syndrome. I find it extremely hard to sleep in on the weekend and typically only manage 8 hours and if I'm lucky 9. Yet I will be exhausted on weekdays. I know this is just a fact of life but it's still annoying. LOL

Work/Family/Play - Work has been... busy. We are working on several different projects and I've got the constant "computer refreshes" as well. It's going rather smoothly even if I don't always get as much as I hope done each day. Some days I just struggle to find that little bit of energy to do what needs done. It seems either I have a productive morning and "can't do anything" afternoon or the other way around. I can't seem to put both morning and afternoon into the same day. Again, it's probably just a limitation on my energy levels. I try to spread it out and do physical type things during one half of the day and mental the second half but even then I tend to feel the slump. I am making progress and I am getting things done so I guess that's the important part!

John has been working major hours. We barely see him at night. He gets home about an hour and a half before I go to bed so it doesn't leave us very much time. He's also going to work earlier and working long Saturdays. Last night he didn't get home until 8 PM after starting work at 7 AM. Don't get me wrong, the paycheck will be nice but I do hate the long days.

On top of John working longer hours there was the murder of an entire family not far from where I live. I didn't know the people who were killed but I do have a friend and her family that lives in the same town. The police are giving us very little information at this point so you can't help but look over your shoulder and double-check your windows and doors when you are home. I hate being home alone with just my son and I.

Speaking of my son, he is more and more into the attitude each day. I think I should have not bragged about him doing well in school. He decided to pull a really stupid move around Labor Day and now he is seeing the penalties of it. He is barely passing all of his classes now due to the "0"s he received and he is finding out what it was like to live before TV and video games.

As for play, we haven't been doing a whole lot of it recently because with John in busy season there really isn't time. We did break down recently and take off just the two of us and went to the Riverboat not far from us. We had a good 4-5 hours, came home just $40 poorer (I lost, John won), but had a blast and it was nice and relaxing. We had fun and both agreed we need to do it more.

I think that is just about all for now. I'm not even going to put that I will try to send more updates because that is a certain way of jinxing myself!


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