The Month in Review... July

Wow, it is still July and I'm getting this post out!!! July literally flew by!

• I'm 13 months past the partial resection of my Grade Three Brain Tumor
• It has been 9 months since I completed external beam radiation
• It has been 7 weeks since I had my first complex partial seizure and 6 weeks 4 days since my last simple partial seizure.
• It has been 2 years since I was hit in the face with a baseball starting this journey and nearly 2 years since the tumor was discovered.

Medically - I am still getting headaches but they are more on the "constant but bearable" stage than the unbearable I was having. When I remember to add them in, two Tylenol every 5 hours seems to keep them at bay. (Sometimes waking up at night, sometimes not.) I have only had to reach for the ibuprophen in high quantities twice in the past week and that was after majorly overdoing it with the hat. I have decided I need to just quit with things on my head because truthfully, the bald spot isn't that visible any more.

The saga with the doctor's office continues... Remember when I said:

"He wants me to call next week to schedule an appointment with him to discuss the scan in more detail and schedule the next MRI."

Note that both John and I heard the doctor make the above statement. I call the doctor's office Monday morning to make this appointment. The reception area had to send the request to the nurse. First off she was snippy with me about why I was calling AGAIN. I told her that the doctor at the clinic had said that the doctor wanted me to make an appointment to discuss the MRI and future options. She replied (again very snotty) "well didn't the doctor at the clinic discuss the results with you?" I calmly replied "yes, but she said the doctor wanted to speak with me." Her response was again not professional, "Well everything is stable so let's schedule you for September 8th and it's a work-in so make sure and be there." (Note that September 8th is almost exactly 2 months after my last MRI and the radiologist had said 1-2 months.) Getting quite ticked off myself, I didn't push the subject since I knew it was no use fighting a stubborn !BEEP! and that I would be better off taking it up with the doctor when I finally get to see him. However, since it takes "two weeks to get an MRI scheduled", I will be calling her at the six week mark to get my MRI scheduled. If she doesn't have it set by the time I see the doctor, there's one more strike against her.

So I've decided that the nurse is a HUGE problem and her and I are going to have to have some rounds before she gets it into her head that I [s]probably[/s] most definitely know A LOT more about my condition than she does and therefore she needs to stop acting like she knows what is best for me and what to "waste the doctor's time" with. If I get any issues with getting the MRI scheduled, I will be going to the administrator of the clinic and filing a formal complaint. Furthermore, if the MRI is delayed and it shows any sign of problems that might have been prevented/caught earlier had I been allowed to speak with the doctor and get my MRI sooner... I will be pressing far beyond a complaint and if all goes well, she won't be a nurse for long. I'm not usually this way but she is playing God with someone's life, not a puppet and that someone just happens to be me!!! Besides, last I knew a nurse did not have a medical degree nor the right to make decisions about a patient's health. Therefore she should also not be deciding what to pass on to the doctor and what to conveniently leave out. UGH. I need to get off this subject my blood pressure is rising!

Emotionally - Well, it hasn't been a good few weeks in the emotional department either. I'm very short tempered right now because of the headaches, lack of sleep, and total frustration at the nurse. The other day I came up with a thought that puts it all very well into perspective. I feel like I'm a prized fighter in the match of my life (more of a fight for my life) and those that are supposed to be standing in my corner and giving me a boost and support (medical community), are instead taking sucker punches at me trying to make me lose. I've come to realize now why so many people do not take their health into their own hands and be their own advocate. When you are met from constant and total resistance, it's hard to find the fight. It would be much easier to sit back and let the doctor manage my life. Heck, maybe I should have long ago started chemo and then we wouldn't be in this place right now (I'd probably be in worse shape but I'd be getting my MRIs!)!!! Oh to be able to take the easy way and just follow whatever the doctor says without researching alternatives and getting the facts. That would be the easy way and I've never taken the easy road.

Mentally - I can't deny that the loss of my license is taking it's toll on me mentally. I hate being reliant on others and having to coordinate an already crazy schedule just a bit more. I spend as much energy on this as I do most other things in my life. My son and I had plans this summer during my company shutdowns. Now it is "just another week stuck at home". It feels a lot like last summer did when I also could not drive. I just hope this isn't a pattern and that things go smoothly next summer. (Of course, hopefully the economy has improved and we don't have the shutdowns next summer.)

I've buried myself a lot into facebook because it's something I can do that is mindless and can get me away from everything. That's not a good thing but it works. I don't even really get pleasure in my Harry Potter sites right now or even games for that matter. I'm sure it's just a low part of the roller coaster and I'll get back ahead of it, but right now this whole thing sucks and it's making me someone I'm not.

Physically - Well, my physical side can be summed with one word... headache. Honestly, things have been better this week than they were the previous week and I've managed to get motivated to work on the house some and my energy is a little better. Not a lot but a little. Now if I can just add more than 6 hours of sleep a night into the equation, I might actually feel pretty good again!

Well, I'm officially down a pant size! One day over lunch my mom and I went shopping and I got a couple of pairs of pants that fit me pretty good. They are a size smaller than what I've worn since I had my son and honestly, I'm probably not far from being able to go one size smaller yet. Unfortunately, I do have two problem areas that are not my tummy and therefore I struggle with the next size down because I never get it far enough up to be at the tummy. I don't want to be uncomfortable so we'll stick with this size for a while!

If all goes well, I may be getting my first haircut since I had surgery. I'm hoping we can figure something out to make my hair lay better than it does right now. I'm struggling with the very thing I hate about natural curl... it always looks unkempt to me no matter what I do to it. Maybe we can change my mind's eye on this a bit. LOL

Work/Family/Play - Well my son got a blue ribbon in foods and a blue ribbon in his consumer project at the 4H show. He will be showing in woodworking and electricity on August 3rd. He has been working with his dad to finish up these projects in a timely manner. It's nothing like waiting until the last minute!

Today my son left to go to Chicago for a trip with 4H. I think he will have a blast. It's only an overnight trip but it's good for him to get away since other plans became shot when I had my seizure. This is two summers in a row that plans didn't exactly go as planned thanks to my health. However, next summer we are going to Disney come hell or high water!

We also found out that school starts for him on the 19th. This is going to cause a few minor issues because we were planning on all being out of town during this time. I guess we will have to find someone for him to stay with so he can stay home and not miss any school. I think they start earlier and earlier every year. It's just not right to start school before the State Fair is over!

All jurors were dismissed for John's first week of jury duty. Now he has to wait until August to find out if he'll have to serve on that round.

Well, I think that's about it for now. Hoping I get more sleep tonight than the three hours I had last night. Hoping this is finding everyone well. *huggles*

Not quite normal; but improvement

Well, I started on the steroid, per doctor's orders, on Saturday. Not doing to bad with them so far. Little on the cranky side and having hot flashes out of this world but other than that, not too bad.

The headaches have also improved. Friday night I figured out the trick. You see, I am typically a belly or right side sleeper. This is how I discovered on Thursday night that my headaches got worse if I slept on my right side. Well, Friday night I forced myself to sleep on my back. This has never been an easy thing for me. I'm the one that slept with my belly in a triangle of pillows when I was pregnant with my son because it was the only way I could sleep. Anyway, I found that if I put a pillow under my ergo-neck pillow and shoved another pillow under my right side and another to curl up with on my left, I could at least hit a light sleep and keep the headaches from rearing up at night. I actually went all night Friday night without having to take additional pain meds. Same for last night. So, hopefully I'm working on getting this thing figured out. I still have to be careful because any pressure no matter how light on my right side is causing the headaches but it's still much better than it was.

I think yesterday I got through the day with only 5 ibuprophen and 4 tylenol. I'm trying to move to normal doses of tylenol instead of so many ibuprophen. I guess I'll know at a later date if the steroids are doing anything for me at all other than making me a bit moody.

Anyway, I just wanted to post a quick update so I had better get some things done now. I have some paperwork I need to get through and a load of laundry to fold. UGH!!!

I Finally Got My MRI

Ok, first a little update on what has happened since I posted my last update.

On my last update: I had called the neurologist concerning the headaches and was told I could not get an MRI until it had been six months and he wasn't concerned about it anyway. It's just scar tissue so nothing to worry about.

Since then: I contacted the insurance company and the doctor is full of crap because there is nothing that prevents a medically-necessary MRI and they could see no reason this would be denied.

Evening of the 9th, while waiting for a headache to go away, I realized part of the headaches developed when I would lay on my right side of my head. I got to thinking that about a week prior I had hit my head hard getting out of my mom and dad's car. The more I thought, that was also when the headaches went from "constant but bearable" to "horribly painful". Now concerned about a possible concussion, I contact his office again.

This is where we come to today. I heard back from his nurse just before lunch and she asked for additional information on what I was experiencing. Well, by this time I was not only dealing with the headache but I was extremely nauseous and just not feeling myself. She called back around 2 and the doctor said that if I was concerned I should go to Prompt Care or the ER. At this time of the day, he would not be able to get me into an MRI for several days but they would be able to push it forward.

So off to Prompt Care we went. I had a great doctor and she agreed that it needs to be looked into. Within 20 minutes I was ready for an MRI. The basic conclusion was as follows: There has been a lot of change since the last MRI but the radiologist was pretty certain that it wasn't recurrence of any of the tumor/cancer. However, he did think there was a significant amount of scar tissue and that it should be reevaluated with another MRI in one to two months. He said that the scar tissue was positioned as such that it was causing pressure on the "flap" where they went in for surgery and thus causing my pressure headaches. They contacted my Neurologist and he agreed with the radiologist's assessment. He wants me to call next week to schedule an appointment with him to discuss the scan in more detail and schedule the next MRI. Basically, if we had not gone with the MRI, it might not have been the end of the world but we'd be stretching this thing out several more months waiting to see if things changed even more significantly thus changing the diagnosis to a possibility of regrowth.

The final verdict being: There is significant change (this is a bad thing but normal post radiation and surgery), none appears to be regrowth (a good thing), the scar tissue appears to be causing some pressure and the headaches as well as the seizures (a bad thing), we need to reevaluate it in a short term setting to make sure there is indeed no regrowth coming (a good thing). Basically, the Neuro had to "eat a little crow" because at first glance it was very suspect for regrowth and every doctor I was in contact with today told me I was well in my right to get this MRI and that this needs to be watched very closely.

Oh, the remaining bad... go ahead and take the steroids and take ibuprophen/tylenol for the headaches. Not much else right now they can do. Gee thanks, Doc!!!

What a day. I'm going to bed now. The good, the bad, the ugly.