Monday, July 27, 2009

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*

Sunday, July 12, 2009

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!!!

Friday, July 10, 2009

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.

Wednesday, July 8, 2009

Trigeminal Nerve... Answering a Comment

This post in in response to a comment left by Kristen:

hi, i just read your post....was wondering if your nerve healed back to normal.
Thanks for the inquiry, Kristen.

I will admit that I don't think too much about the trigeminal nerve any more taking the lead from my doctors who all think it is nothing in comparison to the other things I am dealing with. (I don't disagree but I also hate having some of these nagging little things out there that they won't deal with because of the "bigger fish to fry".)

Anyway, I have been taking Neurontin to keep the nerve from hurting with the "windburnt" feeling I had in the beginning. Therefore, it is very difficult to say for sure if it has healed fully or not. I still ocassionally get the numb feeling and my right eye still goes through major bouts of dryness, which are all issues I had in the beginning with the nerve. Therefore I am guessing it is still there and not really back to normal. With the assistance of the medication, it feels more normal but it has its days when it isn't.

I hope I was able to answer your question, Kristen!

The Month In Review... June

Ok... so it is July. I think I spoiled you all in June with all the updates. Be prepared because you may have more of that in July!!!

  • I am a year and just shy of one month from the partial resection of my GRADE THREE BRAIN CANCER. (I'll explain the capitals here in a bit.)
  • It has been 9 months since I completed radiation.
  • It has been 1 month since my first complex partial seizure.
  • It's been almost 2 years since I was hit with the fate driven baseball that started the journey!
Medically - Where to start, where to start. Benign topics first I guess. I still have to go for follow-ups with my eye "issue" but he doesn't believe it's anything to be too worried about, he just wants to watch it. *rolls eyes* (Read between the lines, he gets paid $350 from the insurance company every time I walk in the door so he wants to keep the money coming in.)

I did finally get my partial for my teeth. It feels good to have teeth again and within about two days after wearing them, my mouth pain went away. Imagine that...

Now to open the can of worms... As you all know, I had my first seizure last month. Thanks to Keppra, I have not had a seizure since the 11th so that is a good thing. Now I just have to wait out the 6 month grounding so I can drive again and things would almost be back to normal. My neurologist is pretty certain it is just scar tissue causing the seizures but I myself am beginning to have my doubts. About two days before the first seizure, I had some horrible headaches. I didn't think too much about it then because my neck was bothering me, my mouth was killing me, and it was starting to get hot out and the heat always gives me minor headaches. I figured the three things together is what made them so bad. Well, the headaches continued beyond those two days and well past when I stopped having seizures. I asked the neurologist about them and he said it was probably the scar tissue causing them as well. Long story short, I've now been dealing with the headaches for a solid month and they seem to be getting worse rather than better. Knowing severe headaches can be a sign of pressure in the brain or tumor regrowth, I contacted his office about them thinking maybe we should get another MRI to make sure there is nothing going on up there. If it is regrowth we need to start treatment yesterday so we really shouldn't wait another month to have the MRI.

Well, his nurse spoke with him (without even having talked to me first just going by what the receptionist took down) and he said the insurance company would not approve an MRI less than 6 months apart. For one I know this is not true because I had an MRI every other month leading up to surgery and secondly most Grade Three Brain Cancers have MRIs every three months for the rest of their lives. She stuck by her guns saying that it would be a waste of money and that he said it was not necessary. Instead they are putting me on something for the headaches and will wait until August for the MRI. Guess what I'm going to do today? Call the insurance company and see if a cancerous brain tumor is allowed an MRI only every six months or not. Anyone know a good neurologist in central IL?

Had she not ticked me off by being so adament that the doctor was more knowledgeable than me on the subject I would have probably remembered to tell her the other issues I've been having. Let's see, signs of a brain tumor: headaches, dizziness, seizures, nausea, feeling not like oneself, etc. Well, I've have all of those signs in the past month. I can't believe all five of these signs would suddenly show themselves, when I have never even had a sign from the tumor in my entire life, if there wasn't something more going on up there. I was sure to call John and tell him what was said. I want as many "witnesses" as possible for when I have my MRI in August and it shows regrowth!!!

Emotionally - *Deep Breath* Well, as you can see by the above section, I'm not in a very good place emotionally right now. I'm in pain, I'm aggravated, I feel like I'm being hung out to dry by the fourth doctor since this journey began, I'm in pain, I'm annoyed that no one is really listening to what I'm trying to say, I'm in pain, I'm frustrated that I've now had to fire every doctor that I've dealt with on this issue but one because of their attitude or lack of listening power, did I mention that I'm in pain? Obviously, my neurologist wasn't at the hospital when I had surgery. He doesn't know my pain tolerance. Not many are able to leave the hospital on nothing but tylenol when they've just had brain surgery. Well, that same person is taking between 8 and 12 ibuprophen a day to keep the pain to a tolerable level. Does this sound at all normal to you?

I guess the biggest issues are that not only am I relying on everyone around me to get places but my resolve to fight doctors is almost gone. I am in too much pain to care anymore and that scares me. I've always been a fighter and I've always been able to go against the odds and get what I know is needed but I've not got it in me to do anymore. So two major areas of my personality have not been beaten down and I fear my will to fight this crap in my head will be next. Unfortunately, feeling this way now is not a good thing because if my fears are right and this is regrowth, I am going to need all the strength I've fought with for the last year and then some to dive into the next chapter of this story.

Mentally - I'm getting quite a bit back into the issue I hit many months ago where the Mental and Emotional sides are pretty much one. My motivation has again taken a hit but I think a lot of it is because my mind never really feels clear because of the pain I'm experiencing right now. I have things I need to do this week while we are off on shutdown but I am lucky to get half of one thing accomplished before I want to curl up back in bed to sleep. (Yet another symptom that has arisen since right around the time I had the first seizure.)

Physically - I knew the many months of reporting an improvement in my stamina would have to eventually stop. Well, this last month has shown a major decrease in my stamina and my energy level sucks. It's almost bad enough that when I see the Psychiatrist on the 21st, I'm tempted to try going off of the Adderrall and see if there is any change at all. I feel at least as bad as I did when I started it back in December, if not worse at this point.

I have had to start wearing belts for most of my pants again. I have broken the threshold of my lowest weight since having my son. Yet one more thing that is starting to concern me a bit in hindsight. I'm not doing anything different that should be making me continue to lose weight. I haven't danced but three times all year and outside of a little yard and house work, nothing major in that respect either. I had plateaued nicely before I had surgery last year and basically felt that if I got back to that weight eventually, I would be happy. Now I'm working on well below that weight. I guess this is just something else I need to mention to all of my doctors and see if any of them truly try to figure out what is going on. I thought it was supposed to be harder to lose weight the older you got, not easier.

The hair is doing amazing and I may actually have to go in for a haircut soon so that maybe someone can do something with this disaster on my head. The "bald" area isn't really bald anymore. It has lots of very sparse, fine, light colored hair. It is quite a bit lighter than the hair around it so it still sticks out pretty bad but it is truly there!!! If it weren't for the horrid curl that has taken residence, I could do a combover right now and hide the fine area but the curl makes it impossible to do. Have I ever mentioned that I hate curl?

Work/Family/Play - Well, I am mid way through the 5th week of shutdown we have had this year. Our plant has two more scheduled. One in August, one in September. There is actually a whole month between this one and our next one. I hope I am able to make it through them. My body has never fully gotten back into the swing of full-time employment since coming back from surgery last year and the shutdowns have been just far enough apart that just when I get to the point I can actually make it through a week without nearly losing it, we are off again. This next stint should be interesting!

It does help that we are very busy in IT at work. We have several projects going and that is good because the time we are there goes by quickly. However, it also means I wear myself out more trying to reach deadlines in the drastically reduced time frame. We'll see how it goes over the next few weeks.

John and my son are working on 4H projects this week. I think he has finished his electricity project and they will be working on the woodworking next. He has his foods and consumer show tomorrow. He has his consumer project done but he needs to get moving on making his muffins or he's going to run into supper making them.

He was able to pass the 6th grade. He didn't pull it off by much but I think that he was scared into working a bit harder next year as long as this has been a boring enough summer for him. (His poor grades has warranted a summer grounding from all video games)

John is finally slowing back down with planting season. He is putting in normal hours again and should be home Saturdays again for several weeks. He has declared he will be taking some days off to get things done around here but we'll see. He is also going to have to take some time off for jury duty at the end of July and August. He has the darndest luck with that. I think in the 12 years we have been married he has had 6 summons for jury duty. He served the first and the fourth but got out of the other three because he had just served. One was for the federal jury so we were both thankful he didn't get caught with that one. At the time he received it, there was no way we could have survived if he had to miss a week or more without pay.

John and I were able to dance twice the week of Relay. It was great! I miss dance so much but the way I feel right now, I'm not sure I could dance if I wanted to. There won't be any more dances until the 18th so maybe I'll get something sorted out between now and then. *sigh*

Relay - Relay was a huge success even if we did have to move it inside. I haven't finished figuring up the remainder of our money but I will need to do that by the end of the week. Our team was a silver team based on the amount of money we raised and we were the second team in fundraising for the event. I will be sure to report the final total after it is all totaled. Thank you all again for your support!!!

Well, I guess I better make some phone calls now. I need to call the hospital in Chicago to get some paperwork filled out and my insurance company to see if my neurologist is just trying to pull a fast one or if I indeed can not get another MRI with a cancerous tumor until August.