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
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
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