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*

Sending All You Moms A...

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Happy Mothers Day

My First Ever Survivor Walk

On Saturday I attended a Relay for Life in a town local to where I grew up. I was a "member" of the team, although a rather inactive one. My primary goal was to get a feel for what Relay was all about before being a captain in my local Relay. I will say that it was a very special night for me.

The Relay was launched with the traditional Survivor Lap. This particular Relay was set up in a high school gymnasium so everyone crowded into the gym as the survivors took their lap. It felt good to be walking with the other survivors and the crowd was amazing as they gave round of applause. The second lap, we were joined by our caregivers. I squeezed John's hand tight as we made this lap. I think, in total, I made 55 laps that night. (I was feeling it the next day!)

Another part of the Relay that I found really special was the Luminaria. They had a screen set up at one end and all of the luminaria were "lit" and the screen scrolled all of those whom had luminarias as well as all of those that were survivors. It was quite emotional to see my name up on the screen with all of the other names of those who have walked the same path.

We only stayed until 1:30 AM for this one because of the very little time I'd have to make up my sleep. (This was on a Saturday night where my local Relay will be on a Friday night) If I don't get the opportunity to get enough sleep, not only am I at higher risk for seizures but I'm pretty much useless the next day. As much as I would have loved to stay the whole night, I knew it just wasn't possible for me to do.

It makes me even more excited for my local Relay. I can't wait to captain my team as we continue to raise money and awareness for the American Cancer Society.

Not Just Lack of Updates

I was just sitting here and I realized that not only have I had a horrible lack of updates recently but there has been a huge lack of quality updates as well. I think my last monthly update was the only one of quality for several months. *sigh* I guess I'm either dealing with spring fever, brain cramp, writer's block, or maybe just a bad case of "my internet sucks".

For a long time I was doing very well with updates and I was happy with my blog. I still love my blog, I just find it harder to come up with anything meaningful to write about. I could sit here and bore you with my philosophy, gardening ideas, or Harry Potter jargon for weeks but I could never really do that to all of you faithful readers (all one of you!!!). That would be worse torture than I would even put my worst enemy through.

I am going to try hard to come up with some new ideas on posts over the next few months. I guess my biggest challenges has been that I am no longer heavy into dealing with the original subject matter of the blog but add in the toll my brain took just shy of a year ago and you have a total disaster.

I don't look to post over the weekend but with any luck I will be awake enough to post all about my first Relay For Life and Survivor's Lap on Monday!!!

The Month In Review... April

The Statement for the month... There is no way that April is almost over... I don't even have my garden planted yet!!!

• I am 10 months past the resection of my brain tumor
• It has been a full 6 months since I completed radiation
• I am in month two of being stable (No laughter now)

Medically - Everything is stable medically for the time being with the exception of the teeth issues and the doctors freaking out about my neck, blood pressure, and optic nerve. *sigh* If it isn't brain cancer it's four others...

I guess I'll take these one at a time since at least one of these things has never been mentioned in my blog or updates before. Start with the teeth. Where my two teeth were pulled earlier this year, I have been having pain because my other teeth are moving into the gap. This isn't a big deal, easily managed with a bit of over-the-counter medication but now my dentist is telling me it will be 8 more weeks before I can get the temporary partial!!! I have never heard of the like. Unfortunately, the dental plan I have has only a few dentists in my area and I mean only like three and none of which are accepting new patients. Therefore, I'm kinda stuck. I fear how much damage will be done to my teeth (or my stomach from the OTC meds) before I actually get my partials. Have I ever mentioned I hate dentists?

The second thing is my neck. Way back when I mentioned this in my blog but it was probably lost in the middle of getting ready for surgery. It was over a year ago when I was having issues with my neck and my chiropractor became leery of working on it because of the pressure in my head. He was concerned that my whiplash injury from two years previous was masking problems caused from my tumor. After weeks of dealing with the issue, it landed me in the ER in excruciating pain. Never did see anyone after waiting for several hours. Long story short they ordered a head/neck MRI. They found a spot in my C3 vertebra. Hemangioma. Benign spot. A birthmark. He worked on my neck after this but now it's been a year and he is worried about the C3 again. None of my other doctors think it is anything to worry about so I'm having trouble getting any tests run on my neck to prove things are still fine. This leaves me dealing with the post trauma of a whiplash injury by using my own methods.

The third thing is my blood pressure. This seems to almost directly correlate with two things: my stress level and my weight. I used to have naturally low blood pressure. My average was 100/50. Note that I said average. It wasn't unusual for me to see 80/43 or something similar. The first time I ever had issues with it was when I was pregnant with my son. It reached 198/110 when the OB said it was time to induce. It took it about eight weeks to get back into an "acceptable" level. (new born baby, 50+ extra pounds...) It has been something we have watched but never seriously concerned with from that point on. About three years ago, following a rather rough stressful time when a possible heart issue was discovered, it spiked again. This time the doctor wanted me to watch it very closely and I started frequent appointments with him. After losing 35 lbs, my pressure got back into check. It stayed relatively well, despite the stressful situation, up until after I had surgery. After gaining back almost 50 pounds thanks to the steroids, dealing with the stress of having been told it is cancerous, and let's not forget radiation treatment; my blood pressure was around 135/85-95. My doctor was freaking out. Not only was my blood pressure high but he didn't seem to remember that steroids cause weight gain. He became almost obsessive with my weight. Anyway, I had a recheck with him on Thursday. My blood pressure was a very acceptable 110/80 and my weight is back down to below what it was when I had surgery. He's happy now; I'm happy now; hopefully this doesn't fire back up anytime soon.

Then we have the whole optic nerve fiasco. I understand, my optic nerve looks strange. If it were to appear this way in a normal patient it would indicate something wrong. Here's the thing they forget... We KNOW something is wrong. Did they miss the memo that I have a brain tumor? Or what about that I had brain surgery? Oh, and did they miss the part about brain radiation that would affect parts of my optic nerve? *sigh* So my optic nerve looks weird and they don't know if it has always been that way or if it is caused from what I've been through. Does it really matter? As long as I am not having vision issues, headaches, or anything along those lines; does it really matter that my optic nerve looks weird? It's not like they are going to do anything about it. They want to watch it. That's cool. I don't have an issue with that. But when I have to take time from work, not once but three times, for a single appointment and pay $90 in co-pays, it IS A BIG DEAL!!! So you want to do this once a year. I can live with that. But we're getting ready to have it done the second time since December. I think I will have to have a long talk with my two eye doctors. This thing of having to have a field of vision test (even though I aced the first one) with one doctor before seeing the specialist and having two more tests run before seeing the first doctor to discuss the results is going to get old VERY quickly. I know, I know, they are just being cautious. But enough is enough.

So there's the medical scoop beyond the world of cancer. In dealing with the issue that could some day take my life... I see my specialist in July and my next MRI is August. It's kinda interesting that the most serious of my medical issues is the one they are least worried about. Then I wonder why I've had to take my own care into my hands in order to keep the whole things sane.

Emotionally - I will admit that I'm a bit stressed at times trying to find time to do everything that I need to and still get the amount of rest I need to properly recuperate but other than that I feel really good. I am very excited about being a captain for a Relay For Life Team and it feels good to be doing something in advocacy for cancer. I feel physically good and this translates into wanting to do some good.

I have reached a good plateau and my therapist has released me to monthly sessions instead of weekly or biweekly. I have not been on this level since July of 2007. Honestly, we had been more in a "watch how she is acting to see if there's anything that those too close are not seeing" for some time so it was probably even a bit overdue. Our goal since last year has been to make sure and catch signs of things that might not be outwardly showing. When you deal with this type of thing, it can catch you very quickly. It feels good to know that he feels I am in a good enough spot that it isn't going to sneak up on me so quickly that I won't be able to head it off at the pass.

Mentally - I think a few friends who have sent me some brain puzzles via email will agree, I'm as mentally sound as I've ever been even if I sometimes still feel "off color" with it. I continue to surprise myself by getting better with my brain games, have enjoyed doing mental puzzles that I haven't been able to stand for some time, and even dealing with numbers has not become quite as much of a chore. In this sense, I think I'm back on the mark.

One thing I have noticed mentally is the change in my attitude towards things such as money. You can ask anyone, I was a penny pincher. We bought nothing before we analyzed, saved, and wrote a 20 page questionnaire about why we wanted it. (I'm only exaggerating a tiny bit there) We had a budget and we DID NOT GO OVER IT!!! Even going into stores that I have classified as my weakness (office supply and do it yourself stores like Lowes or Menards) I could come out without making any purchases that were not on my list or necessary. It takes everything in my will power to keep from making stray purchases now. I don't know that this is a "chemical" change from surgery or anything like that. I think it is simply that I know life is short and if I want something I need to do it now and not wait until later. I can still keep from spending erroneously to an extent but it takes a lot out of me to do so. Don't get me wrong. I'm still a budgetting nerd and I ensure we have all of our bills paid, budgets set, etc before buying anything but our extra money has taken a bit of a hit in the last year. :)

Physically - I continue to be strong physically. It's not always an easy process, especially since spring and nice weather have set in. I tend to stay up later than I should when the weather is nice and it gets dark later but then I pay for it because I don't get enough sleep to rebuild. I'm learning my limits quite well but it will be a learning curve to find the right balance between going a whole week able to avoid the Friday "can't do anything blues" and having to go to bed at 8 PM to get enough rest. (I'm out to almost 9 PM now and still able to function but need to find a good balance of early and later sleeping to stay awake at work on Friday.)

As I said earlier, my weight is back down to my pre-surgery weight. It's not my final goal weight but I'm happy with it for now. I tend to naturally drop some in the summer anyway so I'm going to let it ride and do what it wants for now. Besides, I'm not sure getting too far down in weight is a good idea in case something does start up in my head and I need to pursue further treatment. I don't think it would hurt to have a little meat on my bones going into it.

Work/Family/Play - Before the second week long layoff that we had at my company, my co-worker was laid off. We all knew that something like this was probably coming, we just didn't know who or when. I miss chatting with him every day but at the same time I know it was probably the best for him. He had been there over 20 years and was aiming to "stick it out". He did get his package and now he has the freedom to try to find something. He's extremely good technically and I know he will not have any problems finding something. I wish him all the luck in the world.

My son has been doing very well in school and otherwise since going on the meds for his ADD. I think he has kept all of his grades above a C this quarter. (We don't have official grades yet but midterm grades should be coming out soon.) I haven't seen any very poor grades so I think this is a very reasonable assumption. He is also growing up quite a bit on me. You can truly see the "young adult" sprouting in him. He still hasn't learned how to pick up after himself but he is enjoying working in the yard with his dad and learning about lawn mower maintenance and things like that.

He's had a rough spring with soccer. A viral respiratory infection made him miss an entire week of it and now he has an ingrown toenail that is infected that will probably make him miss his game Saturday and possibly his practice Monday. It's pretty sore still and on his kicking foot... He is also enjoying some workshops in 4H and has several things scheduled for the summer already including a couple of camps and trips. I told him he better get moving on his projects so that he has them done before he gets too busy. I think he has decided what his woodworking project is this year but not sure that he has worked out how to actually do it and I'm certain they haven't looked at the electricity project yet. (I need to look up the requirements) He and I are going to work on his consumer project in the upcoming weeks as he works within his budget to get what he needs for his Relay fundraisers. Then the cooking one is always fun but other than attempting the recipe, there's not much preparation he can do for that.

John continues to be busy and put in his first set of really long hours a couple of days last week. For the most part he's actually been on time this week but it's been too wet for most to be in the fields anyway. I am hoping he gets off early enough on Saturday to go to town to the "Green Home" show that is at the fairgrounds. I have tickets I won through the local radio station and I think the whole show sounds very interesting and hope to learn some things to go more green and possibly even save some money.

We did dance once this past month but John was working late the next dance so we didn't make it to that one. We will miss the next dance because I will be doing my other Relay and I expect the boys to come hang out for at least a little while. (or drive me home if I've decided to try it all night and not sure I'm safe driving) It was nice getting back on the dance floor. Unfortunately, this spring is not going to be good for the dances. I think we will be able to make the second dance in May but that will be it until the dance that our local caller will be doing at the Relay. The first dance in June we will be traveling.

Relay - Our Relay team continues to do really well. Our Pampered Chef fundraiser ended up earning just shy of $500 for the American Cancer Society. We are now in the process of conducting our final two fundraisers before the Relay. We are selling Pizza Hut cards for $10 that are good for a total of 12 free medium one topping pizzas with the purchase of a large pizza. We are also selling silicone bracelets that read "Say NO to Cancer; Say YES to Cure". These are selling at $3 a piece. We have them in grey, purple, camouflage, flourescent purple, and flourescent green.

Our team has now earned $1715!!! This does not include the Pampered Chef money or any of the money from our current fundraisers. If you would like to see how we are doing you can visit the team site at: http://main.acsevents.org/goto/pot_of_cancer_cure or you can donate at my personal site: http://main.acsevents.org/goto/dreamcatcher . Hurry because time is running out to donate and support my team!!! Remember that every penny counts in the fight against cancer. Cancer does not discriminate and can affect anyone at any time.

Well, I think this was very long-winded and I apologize for boring you all to tears. I hope everyone is doing well.

Huggles

Looking For MY Bailout Plan

Banks get one...
Auto Manufacturers get one...
Our local grade school gets one...
In a round-a-bout way, my employer gets one...

Yes I understand the economy sucks. Yes I understand that I should be happy that we both still have jobs and that we are not in any financial danger at the moment. However, I think it's time that those who ARE financially responsible get their bailout.

I'm not even going to get into the very controversial and public bailouts of the Banks and Auto companies. It's too broad and I don't have the energy to cover it. They got their bailouts... 'nuff said.

Our tiny little school, that should probably give into the inevitable and consolidate with another school now while there are many options open to them, got a bailout. Their bailout is in the form of a referendum that passed that will raise MY property taxes even more than their already over-inflated cost. All the other schools in the county do it on much less than they received BEFORE the referendum. Somehow I'm not sure that putting a bandaid on a broken bone is going to do much good. I refuse to dive any deeper into this subject. They got their referendum... their bailout... 'nuff said. (Note: Now that the referendum has passed I will openly admit that I voted against this bailout. There were a few teachers at the school that I hated to see lose their job if the referendum failed but that is the only thing I saw positive about it. Remember that everyone is entitled to their opinion and I do not wish to see flames on my blog over this. TIA)

My company is getting their bailout as well in a kinda sorta way. Between laying people off permanently and making everyone left take unpaid leave and pay reductions, they are essentially getting their bailout as well.

So tell me, where is my bailout? The cost of everything from electric rates to stamps are going up. My property taxes are going up. My health costs are going up...

We've made it through our own economic hardships that have occurred yearly for the past five years. I mean we survived losing two months of John's paycheck two years in a row, having to come up with additional money for our house when the idiot that sold it to us screwed us over, and the horrendous doctor bills of the past 12 months. We managed to keep it together and make ends meet and still be able to cover car troubles, medical expenses, a septic pump going out, and now our pressure tank. This all has been covered while I am getting the 10%+ pay cut and having to pay out more.

Why am I doing so well and big businesses (and schools) doing so poorly? I think it all has to do with common sense. You have to plan for the down times, have plans of attack set up, and be willing to think outside the box. Yes, sometimes you have to sacrifice as well. Do CEOs really need million dollar bonuses? Do people really have to have private jets to go only a few hundred miles? Should we pay to support things that might be better off being let go? I know that I am prepared to sacrifice. I don't rack up huge debts to buy the ATVs that my family would love to have, the new flooring we desperately need, or even hire someone to do repairs around our house. If I don't have a cushion to fall back on and have the money in excess, we don't do it. Why are the people we are bailing out not having to make these sacrifices? Why is it that those so far in debt they can't live get "bailouts" but those of us living in our means go without? (This is directed towards normal people who live outside their means with the assistance of credit cards. Bankruptcy is a bailout if I've ever seen one.) Again, an argument for another time.

While they are getting billions, what is my bailout?

My merit increase was non-existent as part of cuts taking place where I work. Due to the layoff of my co-worker, I now have more responsibility and work. My pay has been cut by at least 10-15% because of mandatory unpaid shutdowns. My bailout is simply... at least you have a job.

Sure. A job. Twice the work... 10% pay cut... A job...

I guess, in conclusion, I'd like to see a REAL bailout any day now. I'd be happy with just the difference between what I should be making and what I will make this year... that's a heck of a lot more reasonable than the money to pay the outrageous debts caused by poor decision making. I think it's time to reward the responsible... not the irresponsible.

The Month in Review... March

Hello Everyone.

The statement for the month... Yes, I'm crazy. :)

• I am 9 months past the resection of my brain tumor/cancer.
• It has been 5 months since the completion of radiation.
• I am one month past the great news that everything is stable.

Medically - I'm very happy to say that twice this month I have not had any type of medical appointment to attend!!! After having some sort of appointment every week since August of 2007, this has been a huge milestone for me. It has been nice not having to worry about arranging work schedules or making up time in order to go to the doctor.

My two trouble teeth are gone and I'm not having any problems with where they were. I have to wait until the 20th of April to get my partial because they insist on doing my filling the same day. (On a tooth that doesn't bother me and the filling looks so tiny it's almost not worth it but since the dental insurance has changed and you can only do one every 6 months... I'll let them do it so they don't "need" to do more than one during a six month window.) *rolls eyes* Now I know why I avoided dentist offices for as long as I did.

Emotionally - Everything is going well here. I've got good control of myself despite the additional strain of the work situation. (I'll explain a bit later)

Mentally - I continue to see improvement in this category. The other day I was able to increase a large portion of my stats again in Big Brain Academy for the Wii. I haven't increased my stats for quite some time so that felt good. I've also managed to get a big of my calculations back down. For a while after surgery I could not calculate for anything but I'm getting back to it now. This pleases me.

I'm still not back to myself when it comes to analyzing numbers. This does bother me some but I keep hoping it's more because I have other things I'd rather do and not so much that I just can't do. I used to be "budget beware" but now it's down to just what has to be done to manage our money. I think this is the first time since John and I were married that I did not find the need to do our taxes a dozen different ways and both electronically and by hand. (Yes, I was a bit obsessive.) :)

Physically - Things are still going well here. Right now John and I are on a spring cleaning rampage and are working on lots of projects that have been put off for WAY too long. I've got good energy and I'm keeping up with him physically so that is a good thing. I haven't done wiifit in a while so that I can work on the house after work but I look to get back into it and walking in the next month or so to get ready for the Relay. I am working on setting goals for myself on how many laps I want to walk in a single hour at the Relay.

Work/Family/Play - Work has been... to say the least... stressful. We have lost some big accounts at work and with the downslide of the economy the outlook isn't looking too positive. They have decided to do week long plant shutdowns. I am currently on one of the two that they have already announced. The other will come the week before Easter. Part of me doesn't mind. I have budgetted for this very type of thing so John and I will not be hurt too bad financially. We may just need to put some projects off a little longer. However, I've been getting a ton of stuff done that I haven't had time to do. Between the spring cleaning, Relay, the Pampered Chef party for Relay, doctor's appointments, dance, etc... it's been chaotic and I've been running like a mad woman. I'm slowly getting things caught up and I am happy about my progress so we'll see where I am at the end of this first layoff.

The meds have helped my son tremendously with his school work. He had not missed an assignment since going on it and his grades have improved as well. Hopefully this quarter he can stay on the right foot and not dig a hole that he will have to work his way out of. His spring soccer started Monday night and his first game is Saturday. Both of my soccer mom buddies have kids on his team so I don't have to sit around bored at practices this season. The only issue is that it's on the same night as Relay For Life meetings so I have to be two places at once. We'll work it out.

John has been very busy at work and has already started working Saturdays. I don't mind because it gives me the morning to work around the house... although this week I may wish for it to not be there since I have had that opportunity all week.

We have not been dancing in quite some time. Unfortunately the last couple dances one of us has been sick. (I something similar to the flu one dance and my son had sinus/bronchitis the other dance.) We'll get back out there at some point I am sure.

In other news, I turned 30 on March 15th. I've decided that 30 isn't all that bad but the first week of it I could have done without. I was sick Wednesday and Thursday, the layoffs were announced Wednesday, and we spent Saturday night at the clinic with JJ. So far this week has been better. *knock on wood*

Relay - We are wrapping up a VERY successful fundraiser for Relay For Life. With the host percentage and the 10% that our consultant is graciously donating of her commission we are looking to make around $300 for the Relay with our Pampered Chef Party. The party is still open until 6 PM on the 31st if you are interested in any items. Just go to: www.pamperedchef.biz/loucarm and put in my name as the host. Any product you order will result in a total of $25 going to the Relay.

Our Relay For Life team is doing very well as a whole. We have raised over $1200 of our now $4000 goal. I'm very excited about our progress. If you are interested in donating, you can do so by going to: http://main.acsevents.org/goto/dreamcatcher . All of your donations are greatly appreciated and it all goes to defeating the beast we call cancer!!! Every little bit helps!!!

Well, I hope this has been a satisfactory update. We've been majorly busy but nothing seriously to report unless you want a run-down of all the things we've accomplished around the house this month but even I wouldn't want to know all of that!!!

Hope this finds everyone well. I'm off this week so don't hesitate to bug me!

It's One of Those Days

This post will be living proof that I don't always have things together and I do have my bad days. A big warning that this may be will be a bit a lot whiny.

As if dealing with brain cancer and the constant uncertainty that comes with it, other things in my life have decided to take a dump on me as well. Part of this is my fault. I am the one that screwed up our home network to the point that it needed to be rebuilt, thus making my ability to connect to the outside world become almost completely useless. You would think that one of my two Internet connections in my home would work on my laptop. One will work only when it feels like it and the other requires me to sit away from the rest of the family to use it. I guess this is why I need to hurry up and finish my darn network rebuild. This wouldn't be a big issue because I've got lots of other things I need to be doing but today I'm home sick.

Not sure what I'm down with but it has whipped my @ss at this point. I want to believe it is bronchitis and it is just whipping me more because of my weakened system. I slept for over 12 hours last night and felt like the walking dead when I did get up. I just wish someone would drive this semi off of my chest and take the vise off of my head. That's all I'm asking. The turn of the handle and a set of keys!!!

I guess the next part can be taken in one of two ways depending on how you look at it. They are going on plant shutdown next week at work. We will basically get laid off for a week, come back, and then be laid off for another week. I guess if I wasn't the budget nut I am, I'd be freaking out about it but as much as it will set some of our plans back a bit... it won't hurt us for now. Instead, I guess I get a total of two extra weeks to get some things done. Maybe I'll get the network back up next week so I can quit complaining. Maybe I'll spend it all trying to get well from whatever is going on with me right now. Maybe I'll do what I'm actually wanting to and will be able to get some landscaping done. We'll see in the end I guess. Don't look for me out here much unless I do get the Internet sorted out. It's a huge headache to deal with and will throw me into "I don't want to" faster than anything next week.

This darn illness is going to make me miss the "fun dance" tonight for square dancing. There is no way I feel up to dancing tonight. Hopefully, I can go back to work tomorrow since I need to do a bunch of things before this shutdown. We'll just have to see how I feel. It might be a half day again or something similar unless I am feeling a ton better than I am now. Then you have the Pampered Chef party on Saturday. It will probably take all of my energy to be a gracious host that day if I am feeling like this. So I guess a fair warning to anyone coming to the party, I'm sorry if I get a bit snippy!!!

I think that's it for now. I'll try to update more at a later time. I've really been sucking at updating and I apologize. *sigh*

It's My Birthday and I'll...

Feel as young as I want to!!!!

I honestly thought that the big 3-0 would make me feel really old but honestly it hasn't made me feel near as old as my son turning 12. (or worse yet my friends' kids turning any variation of over 8.)

Truth is, I think 30 is pretty cool at this point. I honestly believed at different times last year I might not see this day so I'm not dreading it but rather enjoying it. Not everyone has the opportunity to survive the things I have by this age. I expect to be saying the same things in 10 years when I hit 40!!!

A Milestone that is Thirty

I sit here today, ten days before I start my fourth decade of life thinking about all of the things that 30 years has allowed me to do. Some of those things are positive and some are not but they all make me the almost 30 year old that writes this blog today.

In my first decade of life, I witnessed the explosion of the space shuttle Challenger upon take off on January 28, 1986. This is the first major event that I remember. You know, those things that you never forget where you were when... Then in my third decade of life I sat with my son, just a few years younger than I was for the Challenger, watching the space shuttle Columbia explode on re-entry. In three decades I saw two space shuttle disaster, of which neither I will ever forget.

I have witnessed the ridicule that comes with being a teen mom, the joy of hearing your baby giggle, the pride of watching your preteen turn into a respectable young man.

I have experienced 12 years of marriage and all of its ups and downs. I have cherished the 14 years, almost half of my life, that I have spent with my True Love. I have stood up against the odds to make sure it all worked.

I have been blessed with friends from many different levels who provide an ear to listen, encouragement to continue, and a shoulder to cry on. These friends have always appeared when I need them most with the words I need to hear. Be they for a reason, a season, or a lifetime they never fail to be there when I need them.

I have been honored with many awards and from various means. There have been physical rewards such as trophies or ribbons for writing, education, and 4H. There have been personal rewards such as a meaningful letter, a special prayer, or a note of encouragement. There have been spiritual rewards such as strength, courage, and recognition for grace under fire.

I have felt the fear, the anger, and acceptance of being diagnosed with a brain tumor and eventually cancer. I have witnessed the fear in my loved one's eyes, the respect of those that can't believe their eyes, and the tears of knowing your life is fragile. I have looked in the mirror and seen the scars of surgery, the loss of radiation, and the person who is still looking back at me and fighting.

I have been gifted the strength to endure, the knowledge to accept, the innocence to believe, and the faith to be at peace with my decisions, the crosses I've been chosen to bear, and my life.

I think the past three decades has been good to me and I wouldn't change any of it if I could.

Valentine's Weekend Update - My Surprise

It was one of those weekends with the highest of highs and some lows thrown in.

• Shave your legs
• Go to bed early
• Leave early Saturday morning
• Need to go to the West side of town

Those were the things that were told/leaked to me by my husband on from Thursday thru Saturday morning about my surprise Valentine's day present. I did end up guessing it on Saturday morning and he was almost relieved to no longer have to hide it.

For those that have no idea, it was a massage and pedicure at a fabulous salon and spa in town. It was fantastic and after everything that 2008 dealt with, majorly welcomed. It was amazing and I told John that he just raised the bar. ROFL

Afterward, we did a bit of shopping an ended up not getting home until late. This forced me to have to hurry to do my Valentine's Day present to him. Rushing around is not a good thing. I ended up jamming my finger into the wall at one point trying to catch something that fell. However, I finished a beautiful, romantic, candlelight dinner in record time. Complete with a fancied up strawberry cheesecake that I only cheated on a little. :)

Sunday, I spent most of the day at the clinic waiting to see a doctor since the finger I jammed looked really bad. It was swollen at least 3 times its size and purple from tip to last knuckle. It wasn't broken but they put it in a splint anyway. I'm just glad it wasn't broken even if I did spend over three and a half hours at the clinic.

That was the weekend. Back to work today. From highs of "No tumor regrowth" to lows of jamming a finger, it was a weekend to enjoy.

Monthly Update For February 2-14-2009

Sorry for the lack of updates but there hasn't been a whole lot to report.

• I am 8 months from having my brain tumor resection
• I am 4 months since ending radiation

Medically - The retina specialist agreed that my funny-looking optical nerve is from surgery and radiation. We will monitor it to make sure it doesn't get worse but he doesn't expect it to.

I had an MRI on Monday and it proved that my new Neurologist and my Radiation Oncologist were correct. It appears to just be necrosis. The MRI showed improvement and there is no sign of tumor regrowth. I get to go 6 months before my next MRI now!!! I won't know how to act since I've had at least 11 since August of 2007. **Does a Dance**

I will FINALLY be getting two of my trouble teeth remove on Tuesday. I can't wait to get them back to healing instead of constant pain. I believe they knocked a filling loose when the intubated me for surgery and it's taken me this long to convince the dentist and set up the appointment with the Oral Surgeon.

In other medical news, I passed my physical with flying colors and I appear stable mentally. (I'll wait while you stop laughing...)

Emotionally - I am continuing to hold up very well and I'm really excited to be doing Relay For Life this year. I think having something to look forward to really helps keep your focus. I've been brainstorming fund-raisers, ways to decorate, and lots of other things. The boys are helping out too so it's a family affair.

Mentally - I'm really not seeing much change here. I'm happy where I am. I can do a lot of the things I did before including my brain games, logic puzzles, math homework, etc. I still have to change my focus now and then to keep from getting bored but that is nothing new.

Physically - I get stronger each day. I can actually work all day now and go home and do the things that need done. I have continued with my wiifit as well and I'm enjoying it. :) I am proud to say that when I started wiifit I could not hold the plank for more than 5 seconds. Now I can consistently do the complete 30. I've also lowered my weight another 10 pounds. I'm just glad to have my energy back. The truth is, there are times I think I have more energy then before I had surgery and radiation. I'm not complaining mind you. I wonder is this was a "side effect" from the tumor I didn't realize I had. Ahh the questions that can never be answered.

Work/Family/Play - Work has been very busy since we came back. We have been migrating and collapsing our domain and dealing with all the brushfires that come along with that. (I know... too technical) Just suffice to say we've been very busy.

Today my baby turns 12. It doesn't seem possible. He's taller than me and he's catching up to me in weight as well. He's a big boy!!! He's struggled recently with school but we hope we have him back on the right track. Please keep him in your thoughts that he can turn things around.

Tomorrow is Valentine's Day. Last night John told me that I need to be sure to shave my legs when I take a shower. He also told me we have to go to bed early Friday night because we have to be up early on Saturday. Suffice it to say, he has a surprise for me. I love when he surprises me like this. I can't wait to see what he has cooked up. I have a few ideas of what it might be but unfortunately I can usually tell when he's lying to me and I don't want to ruin the surprises. :)

The 26th John and I will be going to Indianapolis to see Jeff Dunham in person. He is a fabulously funny ventriloquist that we both enjoy. If you would like to know more you can see his site at: www.jeffdunham.com He has clips on there as well that you can watch. I can't wait to go and best of all the tickets were free!!! (Thank You Andy E.)

Relay For Life - My delimma of which team to join was pretty much decided for me since John will be unable to attend the Relay for Menard County. So I will be captaining my team in the Logan County Relay and will be a team member in the Menard County Relay. Our team name is "A Pot of Cancer Cure" and our theme is Winnie the Pooh. We currently have five official team members and a couple that are still on the wall about it. We can recruit up to 15 so if anyone is interested, let me know. We have some neat ideas and fund-raisers in mind that I will talk about when I do my updates. If you would like to see what we are all about you can visit our team page http://main.acsevents.org/site/TR/RelayForLife/RFLFY09IL?team_id=419168&pg=team&fr_id=14961 and see what is going on. Our first goal is $1000. I didn't know what to expect for a goal so I was told to start here and you can always raise it later.

Love N Huggles

Help Support Relay For Life

I’ve decided to take a stand and fight back against cancer by captaining a team in the American Cancer Society Relay For Life^® event right here in my community. Our team has pledged to raise $1000 to support the Society's mission to save lives and help people who have cancer. I'd love to reach that goal and be able to increase it. Remember every dollar counts when it comes to fighting cancer.

To steal my words straight from my Relay For Life Personal Page:

I Relay because I know that cancer doesn't care if you have a young child at home, have adequate health insurance, or are still in the prime of your life.

I Relay because I don't want to see any more children like Coleman, Julian, and Finn lose their childhood to cancer and earn their angel's wings way too early.

I Relay because I don't want my son and grandchildren to have to worry about losing their spouse, child, or parent to the beast we call cancer.

I Relay so that those that do have to travel this roller coaster have access to invaluable resources, support, and weapons in the fight against cancer.

I Relay because I want to see an end to cancer during my lifetime. Relay gives me the unique opportunity to celebrate the lives of those who have battled cancer, remember loved ones lost, and support the American Cancer Society’s lifesaving mission by fighting back against a disease that has already taken too much from too many families.

I Relay because on August 23, 2007 I had an MRI that was resultant of being hit in the face with a baseball while playing catch in the backyard with my son. The MRI changed my world forever. Five little words changed my life when I was told I had a "benign" brain tumor.

I Relay because in June of 2008, the surgery that was to remove my "benign" brain tumor revealed that I had a grade three Anaplastic Astrocytoma. Malignant. Brain Cancer.

I Relay because I don't want others to have to hear those five words, "You have a brain tumor."

I Relay for me, my family, my friends, and those I have never met that have struggled alongside me or someone they love who is dealing with cancer.

I won't be alone in my efforts. Relay For Life^® brings together more than 3.5 million people worldwide to:

CELEBRATE the lives of those who have battled cancer. The strength of survivors inspires others to continue to fight.

REMEMBER loved ones lost to the disease. At Relay, people who have walked alongside people battling cancer can grieve and find healing.

FIGHT BACK. We Relay because we have been touched by cancer and desperately want to put an end to the disease.

I hope you will support me in this important cause by making a secure, tax-deductible donation online.

Whatever you can give will help - it all adds up! I greatly appreciate your support and will keep you posted on my progress.

Huggles,

Amy

Attitude Really Makes the Difference

I was talking with my therapist today and we got on the topic of personality and attitude. Now not attitude in a bad way but the outlook and attitude that allows you to overcome major obstacles. I have thought about this very thing a lot in recent months. It never fails, at least once a week and sometimes more, I will hear someone say, "I don't know how you do it. I don't think I could have the outlook you do if I were in your shoes." Most don't believe me when I tell them I used to feel the same way. I fully believed that when faced with something like brain cancer, I would curl in a ball and turn my back on the world. Just the thought of cutting my hair shorter than my shoulders would almost put me into tears. So what changed? When you are given no other choices you have to make the decision or in some cases die.

So much for trying to make that a small introduction. LOL Anyway, our conversation continued down that way and I voiced something that I have only thought about until now. I'm sure everyone knows someone who is or was a survivor of cancer or some other "terminal" illness. So let me ask you... What Who is a survivor? A survivor is someone who looks at the odds then chews them up and spits them out. Sure, they may still fall victim to their element but it wouldn't be due to a lack of fight. For those that fight to the end, we don't believe in saying they lost the battle, instead we say that they won and are now in heaven and are healthy again.

Besides the obvious things of when it was found, type, etc... The obvious difference between those that survive and those that don't is attitude. Seriously. How many survivors do you hear utter the words, "After I was diagnosed, I quit my job and just sat around the house waiting to see what would strike me down next"? How many survivors do you know who found a corner somewhere and curled into a ball for days at a time? How many survivors say "When they wanted me to walk around the hospital wing, I told them I hurt too much"? The answer is not very darn many and possibly even none.

A survivor might have bad days where they don't want to get out of bed, but they do anyway. A survivor stands up and takes what comes their way and researches for the future on their own time. A survivor takes that extra lap around the hospital wing even though they are tired and their whole body aches. A survivor knows that the most powerful of treatments are meaningless if you do not have a positive attitude and a will to fight and live life. A survivor knows that if you are going to sit around feeling sorry for yourself while life passes you by, why live?

I would also bet that a vast majority of survivors didn't think they had it in them before the doctor uttered the words, "You have... I'm sorry." It railroads them just as any bad news tends to do to a person but they reach within themselves and find that will to live. Some do it for their spouse, some for their children, some for our family, and others our friends. No matter where the motivation comes from, we all find it and soon we know that WE want to live.

Before long we find ourselves comforting others, telling them everything will be fine. Before long we are presenting the doctors with clinical trials we want to look in to and treatments they haven't mentioned. Then we have the doctors telling us that we have made a wonderful recovery and that we are handling things well. We have friends and acquaintances telling us that we are an inspiration and that our outlook has changed theirs. I don't know about others, but I don't wish to be anyone's inspiration but if my journey can help someone else through a bad situation... then it is all worth it.

I may not see my 100th birthday, dance at my 50th wedding anniversary, or possibly even reap the benefits of retirement. However, I know I will live my life to the fullest, will be fighting to the very bitter end, and will be looking to the angels to heal me on the other side.

Remember Attitude is Everything!!!

To the Eye of It

I really apologize for not posting this all earlier but I've had some energy spikes and had to use what I had. :)

Anyway, on Friday I went to the Retina Specialist for the second opinion on my eyes. He also agreed that my optic nerve looked a bit... out of whack but that it was probably just from surgery/radiation. He ran a few additional tests and saw that my right eye does have some vessel shrinkage/death in the area behind my eye. However, this is all normal with what I've been through. Therefore, he said he would like me to return in 4 months to have the test run again to see if there is any change.

If there is increase, he said it is easily correctable depending on what is actually causing it. Most likely just what I've been through the past 6 plus months.

So there's your update. Nothing major just as I suspected but now at least we have several good baselines so we can watch my sight since it did receive radiation and could cause problems in the future.

Captaining Relay For Life Team

Wow, I can't believe it's been over a week since I posted. I must have really fallen off the update wagon there!!! Sorry about that. Anyway, today I come to you after having some soul searching over the past few weeks and God working over time to make sure I knew I was in the right direction.

Since I'm hoping to go on a six month schedule following my February MRI, I feel now is the time I can relax a bit and get more involved with advocacy and awareness of cancer and brain research. Well, the first of these attempts was presented to me on Monday when I was asked to become a Team Captain for the American Cancer Society's Relay of Life. I attended a meeting on Wednesday about it and I'm really excited about it. I am working on creating a team for it and I've had a few volunteers already but I need quite a few more. You will probably see a lot of posts about it on here in the coming weeks as I try to figure out what in the world I am doing. Don't worry, I hope to also figure out ways for all of you to contribute as well if you wish.

So, that's what I've been up to the past week. Hope all is going well. *huggles*

The Month in Review 1-13-2009

Ok, so it's only the 13th... shoot me. LOL

• I am 7 months since having surgery to remove my brain tumor
• I am 3 months since ending radiation

Medically - I'm just going to jump back to the first of the year and summarize all that's happened since. The appointment with the Retina Specialist is the 23rd so no news on my optic nerve/possible pressure in my head.

Some of you may have heard that I did finally get a call from my NeuroSurgeon's Assistant on the 8th. (I did not make a formal announcement of this.) Anyway, I got the response from him that I expected. It's an emergency we want you here by Monday for an MRI... no your facility is not suitable... no we can not do it over the phone I want to see you in person... possible regrowth... yadda... yadda... yadda. Every word that was said went in one ear and out the other. I already had an opinion that it was necrosis and not regrowth. If it was such a big emergency why did it take more than four days to call me and tell me this? Why must it be done there and not where all of my other MRIs have been? Why can't it be done over the phone? Well, it didn't matter the reasons and instead I informed them that I was changing doctors to someone locally. Again they emphasized the "big emergency" to get another MRI and I just said my new doctor will handle it.

So why did I take his opinion "with a grain of salt?" It's because I got a hold of some of my records from them and I'm beginning to question whether he is even looking at my chart. Why? Anyone who has read my story will be able to tell you in just the first few lines of the referal he wrote to my Radiation Oncologist. "Patient presented to clinic with severe right sided headache. CT scan was performed showing area of questionable origin. MRI was found confirming right sided lesion." For those that don't know my story, you know that I am still asymptomatic (no symptoms), my only CT scan was in the hospital after surgery, and the MRI was done because of being hit with a baseball causing inflammation to my trigeminal nerve. Where they came up with this story I have no clue. So that raised flags to say the least but that wasn't the last of it. My pathology report from surgery states that the tested lesion was from a "left frontal lobe lesion". It is stated as such in multiple locations including notes from the operating room. Well, my MRIs clearly show it is right frontal lobe as does the scar, major loss of hair, etc. Where they got left frontal lobe I have no clue but I assure you that if it was in the left, I would not have had surgery in Chicago but at either Duke or NIH. Therefore, I have seriously questioned if I even have a malignant tumor at this point.

Anyway, today I saw my Neurologist and he agreed to take over my care. After filling him in, he agreed he didn't understand the NS's reasoning to come up there other than it was money in his facilities pocket not my local clinic. He also agreed the guy was probably using scare tactics to get his way. It failed. He went on to ask me why I didn't choose chemo and I explained I didn't want to use all my options on an asymptomatic and unchanging tumor. He said that was good thinking and honestly he doesn't think that chemo is that effective on my type of cancer anyway. He assured me he would have done the same thing. Keep the options open. So anyway, I now have a doctor that not only sees things as I do but is willing to actually listen to me and not just be his way or the high way. He did look at my last scan and was confused in what the NS was seeing that concerned him. The only thing he pointed out was necrosis and edema both of which is normal at this stage in the journey. He is scheduling out my next MRI for mid February. If there is no change he will move me to six months.

So medically I'm in a good position. (Aside from the 107 errors I found in my medical records.)

Emotionally - I am still finding myself to be a bit quicker tempered than I was pre-radiation/surgery but it is at least manageable. I have had a few blow ups I would have normally let slide but honestly it was probably time for some of them anyway. I won't go into any more details here for now.

Mentally - I see progress by the day in this category. For the first time in ages I was able to meditate for a full 30 minutes. I used to do it for 30 to an hour at least three times a week. I was lucky to get 10 minutes before meds.

Physically - My energy level continues to improve with each day. I can get through an entire day at work and make it home still able to do things around the house. Before Christmas holiday I was unable to do this. I am also able to work in a 30 minute WiiFit workout about three or four days a week. (I think physically I could do it daily but other things prevent me from having time every day.) I have now managed to lose 20 pounds of my steroid weight and I'm heading back towards the weight I wish to be.

I am also slowly building up my stamina and strength. Stamina wise I can do the entire aerobics portion of WiiFit followed by my minutes to finish, without being exhausted. (This might even be better than before surgery. I'll be able to say more certainly when the weather gets nicer and I can walk again.) I was also able to do the 30 second plank for the first time. I've been working towards this for some time but was only able to manage 7-12 seconds before dropping my knees. I look forward to getting better at it and maybe being able to get back to a push-up.

Work/family/play - Work has been quite busy since returning from holiday. We did phase one of our migration on Friday and it blew up in spectacular fashion. We had to reinstall all the printers on every computer on the nextwork. It was quite the experience.

Then Monday was just a very bad day. We had the printer issues first thing in the morning, then I found out my son was having some homework issues, then I got into an argument with my Grandma and had to walk out, then I found out the motor on our septic system burned out, and then we had water issues... Do you see where I'm going here? The day was Murphy at his worst.

Anyway, all is feeling better today anyway. I look foward to going to a two-day concert this weekend with the boys and my best friend. I think it will be a lot of fun and I will get to see Phil Vassar again. I think it will be my fourth or fifth time seeing him. He is my favorite singer without question. Then on Sunday we are having a birthday party for my Grandma's 75th. But SHHHHH it's a surprise party.

As you have probably seen, it was a rough few weeks because of the deaths of some people that mean a lot to me as well. Coleman earned his wings on the 5th and David completed his journey on the 7th (from 38Lemon). If you would like to see the video they played at Coleman's Celebration of Life, I encourage you to take a look at: http://www.youtube.com/watch?v=PnDx26D_JuA Have some tissues ready when you watch it.

Ok, I think that's enough for now. We'll see how things go in the next few weeks.

Poem - Fly High Little Ones

To start this post, if you are not a long time reader of my blog, I encourage you to read about another amazing little boy who touched my life very early on in my journey. You can read about King Julian here and here.

I have continued to follow Julian's Carepage as his mom let's us in on the world of Childhood Cancer and her own feelings as she copes with the loss of her baby. She is an amazing woman. This morning she made a post about Coleman's Celebration of Life in which she was able to attend and she shared with us a poem she had written after Julian earned his wings. She has granted me permission to share it with you as well.

The Day I Buried My Son
By Mimi Avery

The sun was beautiful that day
The wind pretty chilly…
People came from afar,
To celebrate his life.

He was so little
But his heart so big,
He touched so many ,
He helped them find God.

His smile was like no other,
Brightening the darkest souls,
His eyes shared the biggest secrets,
On how life was all worth it.

But on that day ,
That cold but sun filled day,
Our hearts were aching,
His eyes were closed.

Smiles only appeared thru tears,
As we stared at his sweet face.
We were all standing together,
With very little understanding .

Why do loving little boys,
Full of beauty and strength ,
Have to leave theirs mothers,
fathers and brothers way too early.

Balloons went up to Heaven,
Faces turned up to the sky,
Beautiful, bittersweet times,
Fly high little ones…

Surrounded by so many ,
Friends, family , strangers,
All gathered around…
Why this overwhelming feeling of loneliness?

The sun was brightly shining ,
The tears freely flowing
My world stopped turning,
The day I buried my son…

Posted in honor of Julian Avery and Coleman Larson

I know many of you have been following Coleman's story with me. For those that want to help do something about it you can join the fight by joining or supporting the following sites:

People Against Childhood Cancer (PAC2).
CureSearch
People Against Childhood Cancer
Alex's Lemonade Stand
St. Baldricks
Rally Foundation for Childhood Cancer Research
Childhood Brain Tumor Foundation
Texas Children's Hospital
Duke University Medical School
Issac's Foundation - Sign the Petition for Gold Ribbon Support
LIVESTRONG

I've learned after 12 Years...

I've been tempted to join in on some of the memes that I read in my daily blog rollcall but have very rarely actually done it. Since, part of my New Year's Resolution is to blog more regularly, here is the first meme I will actually reply to. I received this meme from Donna at Random Thoughts of a Fiery Woman. I will also include her link to ChrisG for the explanation on Memes.


HUSBAND MEME

1. He’s sitting in front of the TV: What is on the screen? History or Military channel or a video game

2. You’re out to eat. What kind of dressing does he get on his salad? Ranch

3. What is one food he doesn’t like? Liver and onions

4. You go out to the bar. What does he order? Beer... usually Miller Ultra or Bud Light

5. Where did he go to high school? Greenview High School

6. What size shoe does he wear? 10 1/2

7. If he was to collect anything, what would it be? Models (cars and military)

8. What is his favorite type of sandwich? Cheeseburger with tomato

9. What would the Husband eat every day if he could? Vanilla wafers or Turtles (Peanut Clusters)

10. What is his favorite cereal? Golden Grahams

11. What would he never wear? Christmas socks. LOL

12. What is his favorite sports team? Chicago Cubs

13. Who is his best friend? Mike is his best guy friend and I am his best girl friend

14. What is something you do that he wishes you wouldn’t do? Worry so much

15. How many states has he lived in? Two I believe

16. What is his heritage? Scottish and American (as his dad says)

17. You bake him a cake for his birthday; Strawberry Cheesecake

18. Did he play sports in high school? Played basketball for a short time and did karate

19. What could he spend hours doing? Playing video games

Anyone reading this, consider yourself tagged!!!

The Things I Never Imagined

Just something a little fun this afternoon.

Twenty Years Ago:

I Never Imagined...

• That I would be in any profession other than teaching.
• That I would have a child.
• That I would be married by the age of 18.
• That I would ever be heartbroken that I only had one child.

Fifteen Years Ago:

I Never Imagined...

• That I would have a son who will soon be 12.
• That I would be working on my 13th year of marriage.
• That I would have as many friends online as I do in real life.
• That I would be able to stand up in a crisis and be strong.

Ten Years Ago:

I Never Imagined...

• That I would not be the mother of twins one day.
  
• That I would still be working at the same company that I started as a temp.
• That I would one day dye some of my hair purple.
• That I would have any need to question if I would see my next decade birthday.

Five Years Ago:

I Never Imagined...

• That I would have to deal with anything worse than the year I feared a heart issue.
• That I would ever willingly cut my hair above my waist.
• That I would ever have a surgery and go into it with peace.
• That I would ever have to deal with something like brain cancer.

Two Years Ago:

I Never Imagined...

• That I would research brain tumors until it hurt.
• That I would ever handle a serious diagnosis with what would be called "grace".
• That I could emotionally handle not knowing what tomorrow would bring.
• That I would be proud of a half inch of hair.

One Year Ago:

I Never Imagined...

• How much people I've never met would impact my life.
• That I would agree to and survive radiation.
• That there was a possibility that "chemo" would become a daily word for me.
• That I would be happy to hear the words, "It is just necrosis."

Ok, so this wasn't much but honestly it's just something fun I thought of. There are many other things I could have put in here but those are just four of each "signature" year.

Did 2008 Start Like This?

I closed 2007 with the following:

Part of me is happy to see 2007 go away but part of me is scared to see what 2008 may bring. There has been many times when i say to myself that "things can only go up next year" only to be proven wrong. I no longer assume that anything can be the bottom of the line. Things can always get worse. This is not a pessimistic outlook on life, rather it is my coping mechanism. By being able to smile through the lowest points of my life, I know that I can keep positive and smile through the next year, be they better or worse than the previous year. That's the secret of life... smile even when you don't feel like doing it.

So here is a big cheers to the end of 2007 and all the obstacles that stood in my way this year. I smiled through them all and now it's time to start a clean slate in 2008 and smile through whatever may come my way. Regardless of what crosses I must bear this year, I will come through on top, with my spirits in tack, and my future in hand.

I'd have to say I hit 2008 pretty close with it. That doesn't answer my question though, did 2008 start like 2009?

Well, in short I was still adjusting to the fact I had a brain tumor and right at the end of 2008 I had an MRI that had a big question mark in it. I was mentally beating myself up and had so many decisions to make I wasn't sure where to begin. I took them on with all I had and really it didn't start too awful bad.

So what about 2009?

At the very, very start of 2009 I thought this year might be a really good one. We were coming off of some nice and quiet holidays with family. We had made it through a very tough year relatively unscathed. Then the bottom dropped out on the fifth day.

On January 5th a five year old boy that had brain cancer, joined the angels in heaven. He was a very strong little boy and I admired his "Nevva gib up" attitude as he journeyed through things I can not even imagine. I followed his story from the time I was diagnosed and watched him through chemo, radiation, surgery, stem cell transplant, and finally death. His death hit me harder than anything I could imagine. I'd never met him outside of the blog his mom wrote but he felt like a little brother to me. Godspeed, Coleman. I know you have the strongest and most beautiful wings and are now with King Julian playing a game of tag in heaven.


Then on January 6th another brain cancer crusader whom was a huge source of information and inspiration, lost his battle to a tumor that so much resembled mine. I was never as close to him as the little boy but his death reminded me that there is no cure for brain cancer. Godspeed, David.

As if that didn't make for a hard enough week, last night I FINALLY heard from my NeuroSurgeon. (It's been almost two months since my MRI and over a week since I sent him the results AGAIN.) He wanted me to be in Chicago on Monday for an MRI. After much discussion, I told him to stick it in as many professional ways as possible. Basically, his impression is that the tumor has regrowth even though others have told me they believe it to be necrosis (dead cells from radiation). I'm taking his opinion with a grain of salt because there is more than one reason I am seeing someone on Tuesday that will hopefully take his place. However, I can't deny that I fear the possibility of him being right.

I'm just now feeling good again and I'm really not wanting to jump into more treatment right now. I need to feel good for a while so I know there is a reason to fight. However, I have to do whatever I have to do. I suspect I will have an MRI within the week and what we do from there will be determined by that.

So, has 2009 come in as 2008 did, in short, yes because I have some big decisions to make early. In long, it's way to early to tell.

I love you all... Huggles

If You Had One Wish

I don't even know where I saw this but someone asked the question, "If you had one wish, what would you wish for?"

I had to think about this for some time. There are a lot of things I could wish for, but I'm not sure which would take the top priority.

I could wish for world peace, but that just seems cliche. I could wish for the end to war, but that really is unrealistic given the way too many people think. Maybe it would be to change the way people think to be more compassionate to their fellow man and therefore more peaceful, but then without absolutely any conflict life would get rather boring, don't you think?

Ok, so those areas are too large to tackle. How about a wish closer to home? Would I wish for my brain cancer to go away so that I no longer have to deal with doctors, treatments, and the threat of death on a daily basis? No, I don't consider that thought for more than a second. I have learned so much about myself over the past year and half, I wouldn't want to lose what lessons may still be around the corner. I wouldn't wish for anything in my past to be changed. I would consider wishing that I live to see my son graduate college but that could possibly be a wasted wish because I hope to do that anyway.

So that brings me on to another set of things I could wish for. How about wish for a cure to cancer? Wouldn't that save thousands of lives each year? Yes, it would but how many lives are taken by other things as well. Is it fair to single out a single thing like cancer? Logically you begin to think you can find a cure for all disease. Nah that wouldn't work because we'd have the whole overpopulated thing. So we move from there.

What is the thing most parents feel has got to be the hardest thing in the world to deal with? I'm sure all parents know this... I think losing a child or having a sick child has got to be one of the hardest things to handle. Thousands and maybe more parents go through this each and every day. They find a way to cope, just as anyone who is faced with something serious does, but wouldn't it be wonderful if they didn't have to? If little children only had to run and play and laugh instead of learning about ports and needles and hospitals? I think it would. So if I had a single wish, I would ask for the end of children dying because no parent should have to bury their child when they are only sweet, innocent children.

Another Angel Earns His Wings

I have just a short update this morning. Monday night Coleman earned his angel wings. Even though my heart is broken after reading this, I am taking the lead of his mom. His entire family have the strongest faith and they are remembering that he was God's child and they were simply chosen to be his family for the time he was here. I will share some of her words:

Coleman was an amazing child of God and we were so honored to be chosen as his parents.

He left this world at 10:45 last night- he fought HARD until the very end, not wanting to give up, but finally letting go. He was a warrior and a hero our hearts will forever miss. We had the most glorious five years together- a gift we will never forget.

A quick story. :)

One day Coleman heard someone say they were mad at God. He didn’t say a word, but later came to me with this complete look of disbelief on his face and asked, “mommy? did you hear them say they were mad at DOD? WHY would they say that?” He couldn’t even fathom the thought. Then he raised his little eyebrows and said, “well, I hope they don’t say that in PUB-WIC (public)!” and walked away. He knew there were some things he could not change, but HIS faith never wavered.

If those words are not a sign of amazing devotion to God, I don't know what would ever qualify. His family is taking his lead in this and although they are hurting terribly they have chosen to turn that anger into action. May our world, as technically advanced as we are, spend some time trying to cure childhood cancer so that fewer of our babies have to go through the journey Coleman has. However, I am warm this morning because I know he is in heaven playing with other children who have earned their wings. To share the words of a beautiful little 5 year old, "some day I won't need NO more meds or pokes, wight mommy?” Coleman, today you will no longer have any meds or pokes. You are free to fly.

As a reminder, if anyone would like to visit Coleman's page and read about this amazing little boy, go to http://www.carepages.com/carepages/ColemanScott and sign up. I know his family will continue to update as they now start their journey without one of their sons.

Please keep Peggy, Scott, and Coleman's twin brother Caden in your prayers for strength and continued peaceful faith. GodSpeed Coleman.

Remember to hug and kiss your little ones today.

Love and Huggles

(After I have let the news settle in a bit with me, I will try to post a proper tribute to the wonderful little boy I have grown to know. The little boy so much bigger than his age.)

Wishes for a fantastic 2009

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