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.

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.

Huggles.

An Update from Relay Weekend

Wow, this weekend has been wild, crazy, and a lot of fun!

I'll post a full fledged monthly update some time next week. For now I just want to talk about the weekend and how Relay went.

Friday afternoon around noon, we began setting up our campsite for the Relay at Lincoln High School. It was crazy trying to get everything done and the plan for having Relay inside wasn't fully figured out so there was quite a learning curve and things had to be moved around a few times at the campsite. We were able to finish setting up before the Survivor's Dinner at 4:30 with the exception of some minor details. At 4:30, I went with my Grandma and her friend Ida to the survivor's dinner. We are all three survivors. Of course, you know my story. My Grandma had a tracheotomy 12 years ago from throat cancer and her friend had breast cancer around the same time. The meal was catered by John Guzzardo and it was absolutely fabulous.

We had walking tacos we were selling throughout the night thanks to a very generous donation by my cousin (he owns Kicks and a few Subways). They were a pretty good hit although it would have been great to sell 100 more or so! At 6, the Relay started with the team lap and the Survivor's lap. It's really quite overwhelming when you walk the survivor's lap. Everyone claps as you walk the track and it really makes you realize that THIS is what Relay is about. Celebrating those still with us and later in the luminaria presentation, remembering those we've lost.

Around 8:30 the square dancers were on the floor until the luminaria event began at 9. We were supposed to start at 8 but the auction ran longer than they expected. It felt good being out there dancing again. We've been so busy with Relay and stuff that we've only been dancing twice all year. I wish to thank all of the square dancers that came out to support Relay and me. It really meant a lot to me to see such a wonderful turnout.

At 9, we started off the luminaria lighting with some words/stories from some of us touched by cancer. I was privileged to be one of the speakers at this and I hope that my speech helped drive home some of the messages that the American Cancer Society wishes to send about cancer. At some point in the future, I will post what my speech was so you all can read it. It's actually quite funny. I told the chair that she needs to be careful when she sends out a speech for something, you never give a writer the permission to embellish. LOL I basically rewrote the entire thing but the message was still there. She said she loved it and I did get some applause at the end of my part. It helps when you have one of the more exciting parts and are able to end it with a shouting chant of "FIGHT BACK".

The rest of the night was filled with varying activities, specialty laps, etc. It really started dying down around midnight and continued throughout the remainder of the night. However, John and I stayed all night and were there to release the balloons at 6 AM. I really found it to be awesome and I loved captaining the team this year. We were awarded the silver team award for the money we raised and we finished second of all the teams before putting in the fundraisers from Relay.

John and I both crashed until around 1:30 PM and we agreed we would go dancing Saturday night. When I took my shower, I realized that a fall I took early in the day of Relay, did quite the number on my ankle. It was quite purple and John almost wouldn't let me dance. I'm glad he changed his mind though after I convinced him it really doesn't hurt and that it's probably just bruised.

We went dancing Saturday night. I think we were able to get in three tips and it felt good to be back on the dance floor. I didn't realize how much I had missed dance. It really is one of the best date nights you can have and there are a lot of very wonderful people that square dance as well.

Today is Father's Day so Happy Father's Day to all of you dads out there!!! We are getting ready to go grocery shopping and then over to my parents to unload the trailer from all the Relay stuff we shoved in there Saturday morning. I am very sore today from the knees down. I think I should have stretched out better or need to get back to walking nightly so that I don't have this problem. :)

It's been over a week now since my last seizure so I do believe that we've got the right dosage of meds going into my system now. Now I just have to wait out the 6 months grounding from driving and I'll be back to normal.

Well, I've got to wrap this up. I'm sure there will be more updates now that Relay is over and I have that time back.

Sending A Happy Father's Day!!!

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My Appointment with the Neurologist

Well, my appointment with the neurologist went as good as I expected it would. He was happy the seizures were under control now and felt that as long as there were no seizures we'd leave the dosage alone. The EEG I had that Monday looked good and there was nothing that was out of the ordinary in it. He is certain it is scar tissue caused from surgery and radiation. We always knew this was a risk because scar tissue can cause problems with seizures and there has been a lot of torture to my brain over the last year and thus a lot of scar tissue.

Anyway, he told me he didn't see a problem with me returning to work as long as I felt good and I'm grounded from driving for six months following my last seizure per state law. He wants me to report to him if I have any other seizures so he can increase the dosage and carry on with the MRI for August as previously determined. All in all he said I seemed pretty sound neurologically and we'll just put this one up as one of the benefits to living with brain cancer. *Smiles sarcastically*

Well, I just wanted to report.

Huggles,

-- Amy

The Seizures Have Stabilized Now

After having between 30 and 40 simple partial seizures on Wednesday and only 9 on Thursday, I have not had a seizure since 9:30 on Thursday night!!! You don't realize how good something as simple as not having a seizure in 36 hours can be until you've dealt with them with high frequency for a few days.

Now my attention turns do other things. I need to get my son ready for camp and John and I will take him there Sunday evening. I am also doing final things for Relay. I have trees to finish, posters to make, packing to do, and of course the final team email to prepare and send. Monday I get to go get my partial fitted for my teeth and I'm hoping that I get to keep a set. We'll see how it turns out. I also have a graduation party tonight for my Harry Potter group Plano Hogwarts. I am the first ever graduate at the site and I'm throwing a huge party. There will also be a surprise but I can't tell you what that is or it wouldn't be a surprise.

Other than all that and hopefully no more seizures, I see the neurologist on Tuesday and I'm pretty sure there will be an MRI in the coming week. I will report what I find out after Tuesday. Friday is Relay For Life. If you are in the area, please come out and support us!!! I'd love to see many of you there. It's at Lincoln High School and it's from 6 PM til 6 AM! From 8 PM until 9 PM I will be square dancing as part of the entertainment for the night so for those that have not seen me dance, come on out and get a good laugh.

I am also hoping to attend our first square dance in several months Saturday night but it will completely depend on how tired I am following the all-nighter on Friday.

A Year (Plus) In Pictures

Today is the one year anniversary of my brain surgery. Here is a special little treat for you that I've been working on. A year and a bit more in pictures. (Scott, you might want to skip this post.)

For Another Week or So

It's sad to say that you are getting used to something that throws a wrench in your day but I'm getting used to my simple partial seizures. I've had around 40 of these today but honestly some of the time I don't even realize they are occurring. Sometimes they come in the form of extreme euphoria that causes me to not only think I'm extremely happy but to make my mouth smile involuntarily. Other times, of late, they are just coming as fluttering of the eyes or my eyes moving very quickly. They seem to come in spurts of 5 or 6 in a short period of time with a large gap of time between. They only last from 5 to 15 seconds and most of the time those around me don't even realize I am having them unless the elation comes at an inappropriate time or when I am in the middle of a conversation with someone. Even then it's usually just a slight pause until it passes.

Today I went by work in order to copy some things to my laptop to work on from home. It was good seeing everyone and letting a few of the more worrisome ones know I am ok. I have been having more seizures today but I think it is more because I didn't sleep well last night then the fact I have been more active today. I am looking forward to being able to go back to work on the 22nd. It will hopefully be good for my seizures as well if I can keep my mind occupied on other things. Not that I am thinking about them a whole lot but having something else to keep me in line might not be all too bad.

I think the worst part is being "grounded" for the next six months. John won't even let me drive the riding mower to mow the grass!!! Not driving doesn't bother me near as much other than having to rearrange my schedule at work in order to ride in with my parents and having to tell my son he can't do certain things because of John's schedule and my inability to drive. I just wish these things would have waited until after Relay next weekend. I have a ton I need to do this and next week and I will be depending on others to take me to do all of it. As if rearranging things for doctor's appointments isn't bad enough, now I also have to arrange for rides. *sigh*

I wish to thank everyone for all their prayers and offers of assistance. My family and I appreciate them greatly and you can bet we will be taking some of you up on these offers as we need them.

I hope to see everyone that I can at Relay on the 19th. With a little luck I will be out there dancing at 8 PM for the square dance and again saturday night if I'm not too exhausted.

Huggles to all,

-- Squiggles (Long story, I'll explain next time. LOL)

Now It's Simple Partial Seizures

Today has been much quieter than yesterday was but things have not completely calmed down. I was in contact with my doctor today and what I am experiencing is normal and could last for a week or more before settling down. All day I have been having what is known as Simple Partial Seizures. They are not near as severe as they were yesterday and doesn't affect me near as much but they are there.

Basically, the new seizures give me a sudden sense of euphoria and I smile for no reason, most of the time when it is inappropriate. This will last for a few seconds and the corner of my mouth will twitch. Again, I am fully conscious and I don't lose my balance or anything but I am unable to speak when these occur. They only last for a few seconds now. Maybe 30 seconds at the most. They are just really annoying and come quite frequently. I'm guessing I've had 30 today. I guess we'll find out more when I see the doctor on Tuesday.

I am hoping to swing by work tomorrow to visit and set some things up so I can work more easily from home. Unfortunately, I hadn't planned on working from home this week so I didn't prepare for it by moving files over to my laptop. This will be my plan tomorrow and to show everyone that I am ok, despite the seizures. My son will go with me so if there is anything that goes goofy, he'll be there.

I've basically started a new topic in my blog. Not that I've really wanted to open this topic but it breathes some life back into it. Tomorrow is the one year anniversary of my surgery. If things go well, I'll have a little treat to post tomorrow.

He's really been good today, helping me out and being here. I don't even think that my partial seizures worry him anymore. It's sad that a 12 year old has to go through watching these but at the same time, he's my hero more than once now and I think he is a great son.

Thank you everyone for all of your messages and well wishes to both he and I. I love you all. *huggles*

Saved Again by My Guardian

This was not the way I wanted to spend the just shy of 1 year anniversary of my surgery.

Some of you may have already heard about this but today, my guardian angel (aka my son) possibly saved my life (and his) again. This morning, while I was driving to work, I had a seizure for the first time ever. While having the seizure, it caused me to veer to the left side of the road. My son realized this was happening just as the front tire hit the concrete barrier on a bridge and was able to pull the wheel and get us back on the road. Had he not thought quickly and done this, we might have both been seriously hurt.

I managed to get the car to a parking lot and wait for John to get there. While waiting I had two more seizures. I was able to tell when they were going to come on because I got a sense of euphoria and my mouth would switch and attempt to smile even when there was no reason. This would last about 2 seconds before it would put me into a full complex partial seizure. My eyes would flutter and my eyes rolled up into the back of my head. My neck would also stiffen to the left. I never lost consciousness and I could hear everything that was said but I was unable to respond to anyone in any way.

After John got there, we headed to the ER per my neurologist's instructions. On the way there I had another seizure the same as the previous three. Luckily, the wait at the ER wasn't bad at all and I was seen almost immediately. I had another seizure while the doctor was in talking with me. He was able to get a solid diagnosis of complex partial seizure. After talking to my neurologist, I received a shot of Ativan which is a quick acting drug that will stop all seizures but it only lasts a short while. I was also started on the Keppra (500 mg) drug, which I will take twice a day for probably the rest of my life.

After I was released from the hospital, I had to go to the clinic to have an EEG done. An EEG tests your brain waves and monitors to see if anything is misfiring and causing the seizures. I will not know the results of this test until I see my Neurologist next Tuesday.

I have not had a seizure since 8:30AM when I had it with the doctor. With any luck I will not have any more and we can start the long process of monitoring. I will not be able to drive for 6 months after it is proven that the seizures are under control.

The Neurologist and the ER doctor both believe they were caused from scar tissue that is resultant from surgery and radiation. We were told even before I had surgery that I was a risk for seizures and they told me multiple times that radiation can cause side-effects for up to 10 years. I am sure that my neurologist will order an MRI when I see him but for now we are all pretty certain it's scar tissue from radiation.

I wanted to make sure and update everyone. I will keep you all posted on what is going on. For now, all is well but this week will be a big test.

Huggles,

-- Amy

The Month in Review... May

The statement for the month... Where in the world is time going? It seems like it was just a few months ago that I had surgery and here it is nearing the 1 year mark.

• I am 11 months past the resection of my brain tumor
• It has been 7 months since I completed radiation
• I am in month 3 after finding that things are stable

Medically - Things with my head continue to be stable and no symptoms have tried to sneak their way in so I'm happy with things at the time being.

The meds continue to work their wonders with keeping my energy and mood stable. I know the boys are very happy for this. They can tell if I've not taken them for some reason.

I'm still waiting for the faithful day I get my partial for my teeth. I can feel my teeth moving constantly and I can't wait. In the meantime, when it flares up I take ibuprophen for it because that's all that seems to help. My blood pressure continues to be stable despite a flare up of allergies/cold over the past month. This is a good thing. I also had the follow-up with my eye doctor and he said he is not concerned with my eyes but wants to keep an eye on it anyway. He believes there is some benign scarring from possibly a fungal infection and the optic nerve is settling back in so there is no real question that it is from surgery and the tumor.

Basically, medically I'm doing pretty good for now. All the above things but the teeth have been put to bed for at least 6 months so we can carry on and enjoy more weeks with no doctor's appointments. :)

Emotionally - Things continue to go smoothly and other than getting a bit stressed out about how in the world I'm going to get everything done for Relay, the yard, the house and still get the amount of rest I need... *Deep Breath*. Honestly, it is good to be busy because it allows me to live my life and not worry about what the future may hold. I've learned even more to live in the present not the future. Love those you have and remember that life is very precious.

On this level as well I have been more or less released by my therapist. He thinks I am doing well and I will check in with him around September. We will be doing two things at this time. One will be taking the Aptitude test I took before surgery last year and the other just to catch up a bit and make sure I'm not making any backwards falls. I still find it a bit ironic that I went to him because of anxiety issues and those seemed to go away after I was diagnosed with the brain tumor. We quickly transferred our focus to stress management and dealing with the emotional side of the situation. I have not had serious issues with anxiety since I was diagnosed. I have told him multiple times "the cure to anxiety is a brain tumor." LOL

Mentally - I still don't believe I'm as sharp as I used to be. I have to work harder on a lot of mental tasks that used to come easily to me but I am still "above average" in most categories. Numbers still elude me a great deal but they are much better than they were 6 months ago. Likewise my focus has improved a good deal both on and off the meds. With the meds my focus is better than it used to be. Off the meds it's just a smidgeon below the previous normal. I've adjusted well to my "new normal" and I've accepted that things will still come to me, they just might not be as natural as they once were.

Another thing that's come up that I think will be best placed in the mentally category. I've been thinking a lot lately about what I want to do with my career. It's no secret that my position at work will likely be eliminated at some time in the near future. I still enjoy working with computers but the truth is, the more network stuff they take from us, the harder it is for me to stay interested. I really don't mind some of the high end stuff we are doing now. It's a lot of reports, researching, etc and it's ok. Sometimes I just feel a bit out of my league when dealing with them. I never took training on leading projects or anything along those lines. I sometimes feel my degree doesn't have the insight that is needed for the position I am heading. I guess this is the long way of saying, I've been seriously considering going back to school to obtain my bachelor's degree at some point in the near future. It will probably still be a year or two away because I need to get the young'n old enough to be able to be by himself during busy season when John will also be late. I guess it's just one of those things I often thought of doing at some point but not really motivated enough to pursue it at the present. Now I'm more motivated and it's something I really want to do.

Physically - I do believe my stamina increases each day. I was up much later than normal all of last week and was able to keep going all week and was able to box some computers up Friday afternoon. Friday night I got 11 hours of sleep, Saturday I dug up weeds most of the evening, that night I required almost 12 hours to recooperate, Sunday I cleaned the siding on the front of the house (it had some nasty mold/algae/green stuff on it), and slept 8 hours last night. I am wiped today. I think three days of strenuous activity in a row was two days too long but I know it will benefit me in the end.

My weight continues to drop and I can visibly see my waist shrink and my muscles in my legs and arms rebuild. It feels good to be gaining some muscle back and I'll have to start wearing belts real soon. LOL For now I'm getting them from the typical summer activities and being more active around the house. I will be looking into the WiiFit again this winter to keep it going when the activity level drops some. For the record, I'm 3.8 lbs from my lowest weight since having my son.

I haven't reported on the hair situation for a while so I figure it's time to do that. My hair is getting really long now. It's around 2-4 inches long depending on where you look. For those that haven't seen me, it is extremely curly. I have a spot about the size of my palm that is still very sparse. There is definitely shoots of hair there, just not in the volume that the rest of my hair is. I think that by the end of summer, I should be able to comb my hair over and no one would even notice the lack of hair. I still wear headbands and hats when I go out because it does still show but I'm getting braver and braver and wear them much less. I don't think I even take one to work with me 9 days out of 10. Really the only time I worry about it is in the sun and when I'm going to be around kids. I'm not worried about the kids but I know kids are inquisitive and I don't want them asking questions that will make their parents feel uncomfortable. I don't mind answering questions but I know what it's like being on the opposite side of the blunt and inquisitive child. Honestly, I look forward to the day that I don't have to even worry about it. I do enjoy wearing the headband or hat now and then but they give me pressure headaches so easily I like to avoid them on the daily basis. Truth is, I have a large head physically and it's hard to find something that is not really tight on it. I often got pressure headaches from things on my head before surgery and it's just been intensified since. In the meantime, I'm trying to keep it from getting sunburnt and encouraging it to continue to grow fast with natural shampoos and conditioners.

Work/Family/Play - Today is the start of our third week of shutdown in 2009. Really, I don't mind them much. I basically think of them as extra weeks of vacation. When you tally in unemployment, we really are not being hurt all that much financially. Even if I didn't have unemployment, I've got quite the emergency fund set up. After this week, we have two more weeks that have already been scheduled. One is the week of Relay (this works out so well for me) and the other is the week after the 4th of July. This week I'm going to be putting the pedal to the metal in getting things ready for Relay. We have trees to make, money to sort out, things to put out on the Relay web, kids games to create, etc. We are also going to work on my son's consumers project for 4H.

I recently found out that my son's grades are not as good as I had the impression. I'm still not certain that he's going to manage to pull off all passing grades this quarter. Most of it is because of him being stubborn and not asking for help when he doesn't understand something. It drives me nuts. I can understand him not asking in class but he has a mom that is very good at every subject but reading/english and I think he should use me more. When I was looking over and explaining his math to him, he was getting 100% on his test because he actually understood the material. All of a sudden, he stopped doing that and the "C" he was carrying at midterm proves that. *sigh* I find it hard to deal with him attitude on grade and school. I was always the exact opposite. I loved school and I excelled academically. I guess he is just his father's boy thru and thru.

Outside of that he continues to grow up a lot physically and maturity wise. He did get into serious trouble recently because he created a Facebook account even though I had told him multiple times no. He is now finding himself grounded from the computer as a result. I just don't think he's ready in maturity for an account such as Facebook and when you live in a smaller town, it's too easy for someone to find you.

I do want to share a little funny here. He will probably be mad that I told this but I think it will give a good laugh. This morning we were all at the table eating breakfast and I noticed he had what appeared to be a hair on his cheek. I told him he had better wipe it off before he ended up eating it. After he tried several times to get it off, I walked over and picked it off. This is when we realized it was attached!!! He went on to whine about me plucking the long hair on his "beard". It was long too. He still only has chicken fuzz on his face but this hair was 1/2 inch long!!! Oh well. We laughed for a bit and he whined that it hurt. Nice way to start the morning though.

The farmers are finally in the fields and John has been busy. He will have to be oncall on Sundays until a majority of them get finished. I don't mind oncall because at least he is still home and we can get things done.

Last update I talked about the Green Show we were going to. It really was very informative and we are definitely considering saving up money to put in some solar panels in our yard to assist with the high electric bills we deal with here. We also got a lot of good ideas for when we redo our kitchen and great room. Those are still a few years off but we have an idea of what we want now. :)

It seems like it has been ages since we have gone to a dance and it looks like the next one will be at Relay. We are just so busy this time of year and it's hard to make it when you never know what time John will get home. The last several Saturdays he's put in 10+ hour days so we wouldn't have made it even if I hadn't exhausted myself. We'll get back into the swing of things soon I am sure. (no pun intended)

Relay - I wish to thank everyone who has supported my Relay For Life team in support the American Cancer Society. I love you guys. There's still time to donate. If you wish to donate go to: http://main.acsevents.org/goto/dreamcatcher Remember every little bit helps. If 5 of you donate $10 we have made $50 that will run advocacy programs to help prevent cancer, research to find cures for cancer, support programs to provide information, comfort aids, wigs, or just someone to talk to for those newly diagnosed or currently going through cancer. You might not believe that your dollars can help but when you put them together, we are striding towards a cure.

I hope everyone is well. I hope to have something special out here on my one year anniversary of surgery so be on the lookout.

*huggles*