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!


The Progress of My Hair

One year ago, this is what I was left with after completing radiation (ignore the markings on my head, this is from Halloween last year. I realized that these are really the only good pictures of my bald head that I have...):

This is the proof that I have a huge bald spot still... even if I'm much better at hiding it now:

When I have a good hair day I can hide it quite well, although the 30 minutes it takes to get this really sucks when you are used to it taking about 5 minutes:

And the answer to the question I am asked the most... Did you perm your hair or is that what treatment did?

Nope, it has always been naturally curly thus why I always had long hair to pull out all of the curl!!! :D

I think it's made some pretty good progress overall. Now to just get that large bald area to get some hair that isn't as light and hopefully encourage it to thicken some. (Or the other side to hurry up and start to straighten so I can do a comb-over!!!)

Wednesday, September 2, 2009

The Month in Review... August

Ok, so it's late... Does it count that I started it in August?

  • I am 14 months past the partial resection of my malignant brain tumor
  • It has been 11 months since I completed external beam radiation
  • It has been almost 3 months since my first complex partial seizure and almost 3 months until I can drive again.
  • It has been 2 years since my brain tumor was discovered
Medically - I think I'm just going to make updates on the entry I made August 25th because I sure don't want to have to go into the entire story again.

I see my Neurologist on the 8th and John and I plan on having a very long discussion with him. If I don't feel comfortable with the way he handles things, I will be seeking out other doctors. (I might be doing this anyway.) I have some names of people to talk with at Mayo as well as one here locally so I will be seeking further opinions and possibly firing my third doctor since this whole thing began.

I have not yet had the will to confront my first NeuroSurgeon about the "malignant" tumor in my records. I hope to do it some time this week but things have been quite hectic at work so I will have to wait and see.

I have spoken with those at the Psychologist office and they were going to investigate to see if they can give my condition a medical diagnosis versus a behavioral one or not. I can't see why it will end up being a problem but I haven't heard back from them yet. If this fails, then I will have to file an appeal and hope that it goes through. Otherwise, I'm likely stuck paying the bill. I did finally find where they say they are "two different entities" but it is buried in a 20+ page document under "exclusions". Had I not been having focus issues, thus the reason I sought him in the first place, I would have probably seen this and known to verify it elsewhere but alas they take advantage of that to get more form their patients. I will basically have three choices of what to do if this ends up not being covered: find an in-network doctor (which I don't want to do), talk my doctor into keeping me on the meds with visits limited to twice a year, or wean myself off the meds entirely and learn to deal with the side-effects of surgery and radiation without it. Obviously, I would lean towards the second option but I would take the third before I would the first.

As if that isn't enough... I think that is it medically this month.

Emotionally - It has been another rough month in this category. The combination of a flare up of my anxiety (the reason I sought out my therapist, who is not to be confused with my psychologist two years ago), a sudden realization about what all I've lost with the combination surgery/radiation I've undergone, second guessing decisions I've made over the past two years, being depressed about not being able to drive for another three months, and just overall stress has made things quite ugly of late.

My anxiety rared up a few times and it's not about the type of thing you would expect. I don't have anxiety with things regarding myself, only when it has to do with my husband or son. You can rest assured that if something is going with them that is out of the ordinary, it will throw me into an anxiety attack. The thing with the State Fair 4H show, John doing his training, John doing jury duty, etc. They seem like nothing at all but the anxiety usually shows through even when I try to ignore it. Can I explain to you what would cause me anxiety about John serving in jury duty? No, I can't. It just does. As my therapist says, "Beware of Attack Frogs" and that's what it is. Something that can't really hurt you but causes anxiety anyway.

Actually, I did misspeak when I said none of it concerns me. I have been anxiously awaiting the right moments to deal with the medical things. Here's something about me that I bet not many people know... When I stall to make a phone call to someone (such as a doctor or insurance agent or someone along those lines) it's because I'm working the conversation out in my head so I don't panic and not say everything when I call them. As long as it is researched in my head, I can usually get through the call with no problems. However, it takes every ounce of my courage and determination to make these types of calls. Perhaps it's a big of a social anxiety but one that I've successfully dealt with and hidden most my life. I mean once the ice is broken, I'm pretty smooth sailing but until that ice is broken, I'm an anxious wreck.

Off the anxiety and more to the next thing. The 22nd, while at the State Fair Square Dance, it dawned on me just how much I lost with surgery and radiation. I literally hit it like a brick wall. You see, I love square dancing. I have a great deal of fun with it and I meet a lot of wonderful people. I used to be the first one ready to hit the floor and "whine" to the caller in lessons about wanting to learn more. I'd be out there each and every dance whether I knew how to do all the calls or not. Well, not anymore. I still love square dancing but the combination of mental fatigue, struggling to get into the flow, stamina, and pure loss of mental focus has made it a struggle for me to dance and it was never more apparent than that Saturday night. It was the kind of dance I used to love. Fast, lots of spinning, tossing in of seldom called calls, etc. I would have loved that before. Instead I felt mentally drained, dizzy, and exhausted after just four tips. This just slammed into me after the months of feeling myself go backwards again in the memory, mental reflexes, and other brain functions. All of which became more apparent following my first seizure. It's possible it is a byproduct of whatever caused the seizures, maybe it's the headaches causing me to be unable to think clearly, maybe it's the radiation doing that 10 year aging thing. Whatever it is, it hit me all at once that night. Needless to say, it was a bit depressing and made me second guess some of my decisions over the past two years. None more so than my decision to do radiation.

Then you've got the lack of being able to drive. I hate having to arrange a ride to do everything. If I have a doctor's appointment to schedule I have to do it, not just when it is most convenient for me but when I have someone who can take me and it doesn't put too much hardship on them as well. John is going to be more stressed this fall because I can't take off and do the shopping or whatever needs done while he is working. The more stressed he is, the more stressed I am. Not to mention the weeks of not being able to really get out much that will inevitably occur. I keep telling myself, you are lucky, you've got people willing to help and you can get to work with no real issues but that is beside the point. I miss chatting with my best friend on the phone while I'm driving home in the early evening. I miss getting home almost an hour earlier or being able to stay at work late if I'm right on the edge of a breakthrough. I miss running to the store to browse or going to a FLYfest with my friends. I miss being able to call up my chiropractor and make an appointment for thirty minutes from now and know I could make it with no problems. I know, it's not forever but I miss it all. I just keep telling myself I'm almost half way through. I just have a feeling the second half is going to be very difficult.

I don't think I even need to go into the details of why I'm stressed!!!

Mentally - I've already addressed this quite a bit. I'm slipping some whether it's from stress, fatigue, or just the physical factor of what is going on in my head. In quidditch, I used to be a nearly unbeatable player but now I find myself missing simple questions on a regular basis. I used to be able to do semi-complex math problems in my head, now I'm lucky to add together four or five numbers without writing it down. My memory is slipping again to the point I think I'm going to have to start carrying around my notebook again or utilizing my iphone more. Mentally I'm just not right and I hate being anything less than full capacity.

Physically - The headaches still continue at the constant, low-grade level. Luckily, they are being managed by routine Tylenol for the most part. I only have to occasionally supplement it with ibuprophen. I am hoping that I will be able to wean the Tylenol down to one every five hours instead of two but we're taking it one step at a time. I want to manage on just Tylenol for a bit before I start introducing reductions.

My hair continues to come in. I really do need to take a picture and post it. I'll try to do that before the next update.

Work/Family/Play - Wow, I'm not even really sure where to start here. Last week was not a good week on the work front either. On Monday, they announced they would be shutting down our sister plant and on Friday we lost one of our own in a motorcycle accident in Wyoming. He had been with our company for 35 years and was once the "head" of our department and the president of the company for a time. All I can really say is "RIP, Mike. You will be missed."

Onto some happy thoughts. My son seems to be doing well in school so far this year but it's still early. He has told us that he wants to be able to join BETA club and he must have good grades to do that so we hope he has turned over a new leaf when it comes to grades.

For the remainder of his 4H things over the summer (this may be repeat for some of you), he won the purple ribbon in both his woodworking and electricity. He would have been eligible for the State Fair in one of them but I goofed and we didn't know about it until it was too late to sign him up. However, we were all very pleased with it and as it turns out, it would have been difficult for him to show that weekend anyway. Just one more of the mysterious ways in which God works.

John has been busy at work but running around at home has him crazier than anything. With me unable to drive, all the errands falls on him. I don't think he realized how often I would make stops or detours on my way home to do things. Anyway, I think we will both appreciate my ability to drive when it comes back.

As for the second week of jury duty. He had to serve for around three hours and dismissed. Now he's done for another year. I say that in all honesty. In the five years before we moved he was summoned for jury duty four times. He only had to serve once because the other three were all within a year but still. He lucked out with one of them because it was a Federal Grand Jury and they said it could take 2-3 months! Anyway, now he's good for another year.

A quick run-down for some things I mentioned in another entry. My dad is doing fine and he's back to work with no restrictions. My grandma is out of the hospital and if we can keep her from trying to do yardwork, will be just fine. And... I think that's it.

Ok, that's all for now. I've got a Memorial to get ready to go to. Huggles