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

Happy New Year Comment Graphics

Comments & Glitter Graphics for Myspace, Hi5, Orkut, Friendster

The Final Update of 2008

I didn't expect to have any additional updates in 2008 but over the last couple of days some interesting things have happened (and I've remembered some things as well) so I thought I'd better go ahead and make the update.

• It's 6 months and 21 days since the resection of my brain tumor
• It's 1 day shy of 3 months since radiation completed

I'm not going to do this in my typical update set since I just sent one out not long ago.

First of all I want to update everyone on Coleman and let you know how to get in if you would like to read his story for yourself. A message from his mom last night says they are home and that hospice has been called in so that he can be with all of them. He is still having a great deal of difficulty swallowing and isn't really communicating much. Their goal is to keep him comfortable. Caden is really struggling as the two of them are VERY close as you would expect twins to be.

I could never really give Peggy's update justice so instead I will give instructions on how to access their page. They have what is called a Carepage and basically it allows them to know who is really watching and have a bit of control over who views. Therefore you do have to sign up for it.

• Click on the following link: Not a member? Click here.
• (If the above link does not work, go to www.carepages.com and click on "not a member? Click here"
• Fill in the short questionairre to sign up. This is just to make sure that you are an actual person and not some bot
• Once you have completed the process and signed in, you can go to the following link: http://www.carepages.com/carepages/ColemanScott
• This is Coleman's Carepage. From there you can read his latest update or read his entire story if you choose.
• After you go there the first time, you can go to www.carepages.com, sign in, and then click dashboard. You will see Coleman's page as a link and if you visit anyone else while there you can see them too.
• If anyone would like some of the Carepages I follow after you have done so, just reply to this email and I'll send them on. Not all Carepages are for children or for brain cancer. There are many different issues out there and it makes you realize how lucky we all are.

Ok, now that I have completed that, I encourage those of you interested in Coleman to check in there and you can leave a message of support to the family there as well. They are an amazing family just as all of the families dealing with the "beast" in its many forms. (Yes, I have a Carepage but just recently and it doesn't say much. If you read my blog or emails the Carepage doesn't say much. It's DreamcatcherAmyOrr )

On to things beyond Coleman. Monday I had an eye doctor appointment. It was something that was long overdue anyway but decided since my optic nerve caught some splatter from radiation (and I have macular degeneration in my family history) I had better get established with someone to monitor it. I am certain they were not prepared for a not-quite-30-year-old to have the history I did. I will admit that I should have taken better care of my eyes in the years since I got insurance. I have never had a "real" eye exam and testing even though I have great insurance for it. I have been to eye doctors and I have worn contacts in the past for minor vision correction but it has always been the doctors at Walmart, Sams, or Shopko where they don't REALLY test you. Well this guy did. He ran several tests on my eyes and saw some things concerning. Yesterday he had me return for a "field of vision" test based on what he had seen. Basically my optic nerve is very swollen and points in the wrong direction. I aced the field of vision test but he wants me to see a retina specialist just to get a second opinion baseline. He said he would be pretty certain that it is from everything I've been through but that it is something to further investigate because it could also be a sign of increased cerebral spinal pressure which could be a bad thing and need to be relayed to my Neurologist. His conclusion is worst case scenario, the Neurologist will want a spinal tap to rule out anything more serious. The jury is out on whether this particular patient will allow this until she is certain that her head has recovered at least marginally from radiation. I am glad he is being thorough and cautious but I can still put on the brakes. He says that basically I have pappilledema which can be very serious in most patients. When you put my history into it, it could go either way. From what I've read on the condition, it is sometimes an indicator of brain tumors so it makes sense that it would also be a side effect of multiple brain trauma. Feel free to look it up for yourself if you want to know more. Anyway, I will be seeing a specialist on the 23rd of January to get the second opinion. In the meantime, I'm not too worried about it but it couldn't hurt to pray that it is just from everything 2008 brought us.

In addition to seeing the specialist you might be seeing me with glasses depending on the situation. A couple of years ago I had minor vision issues. (Not even bad enough I would need to have them for driving.) I chose contacts because I sweat very easily and glasses fog up constantly because of it. I wore the contacts until I injured my trigeminal and my eye became too dry and they hurt constantly. I also didn't return to the eye doctor and wore my glasses for the few times I thought I needed them. (I don't think anyone outside of John and my son saw me with them.) Anyway, my vision has apparently gotten quite a bit worse and I will now need them to drive. He said that the good thing is, my vision for what I do most of the time such as the computer, will not be affected and I can remove my glasses during this time. I get the impression I will very rarely wear them at work and only at home when watching a movie or something along those lines. I will have to wear them for driving. So you may or may not see me sporting my old frames with new lenses. It just depends. After I get the all clear from the specialist or have things tested to verify that it is just from all I've been through, he does have some contacts he said I might try if I'd like. Maybe, I'll be able to get back into contacts. We'll see. Either way, I know it is time to take my eyes seriously and get some correction going on in there. (I have noticed quite a bit of change in vision since surgery so I'm not surprised it's quite a bit worse. I also wouldn't be surprised if I have to see him more than once a year for vision changes.)

So there is the breakdown of how the early part of this week has gone. I do have some other things to run by everyone though. I know some of you work in or around insurance (as does my mom but I have two separate opinions so I want someone to help break the tie). Here's the short as possible version of the story. I get insurance for my son and I through my place of employment. John gets his through his place of employment. I have reason to believe that there is high possibility that I will be without a job at some time in the future. (Those of you I work with, I am just looking over my shoulder because we all know it's a possibility in our future especially with the economy.) John's insurance changed this last year and they were accepting a blanket of "we will take anyone even with pre-existing conditions with no waiting period". Although his insurance is quite expensive to add me to, it would be insurance if I were to lose mine. Since I am no longer insurable because of the brain cancer, this may be a one time shot to ensure I have insurance in the future. John and I talked the the insurance guy and presented it in this exact way. He told us that if I were to lose my job, as long as I had certifiable insurance leading up to it, then his insurance would cover me, including pre-existing, with no waiting period at that time. Now I have been denied insurance from this particular company before. My mom thinks there would be a waiting period of at least 12 months. As I've seen in the last year, there is no way we can be 12 months without insurance for me. Just my MRIs cost over $5000. So those of you that have knowledge of this, would you mind seeing what you can find out? Thank you.

John and I have been getting a lot of things done these last few weeks since we have both been home. There's a lot we haven't done that I wish we had the time to do but there will be other days. We have also had a lot of fun. We've watched a movie almost every night, had a few "Scene It" nights, and just had a lot of fun in general. The jury is still out on what we are going to do tonight. Our original plans are to visit our buddies up in Morton for the big New Years Dance but it will all depend on how I'm feeling several hours from now. As much as I enjoy talking with everyone, if I'm too tired to dance, we're probably not going to make the trip. It's hard to watch when you want to be out there. If we don't, rest assured we will have fun here at home. We will probably pig out on junk food and play games as long as I am able to stay awake. I will also call my baby brother if we decide to stay home and maybe he will join us. I will probably have to make the decision by 1ish on what we are doing because I will require a nap before we leave if I am to make it until midnight. If we don't make it up there, have fun everyone and know we are with you in spirit!!!

I seem to think there is something missing that I wanted to say but I'll be darned if I can remember what it is. I'll just give some more details of the month to come and maybe I'll remember what it was...

Tonight - Read above
Tomorrow - Go to Grandma's house for New Year's "Brunch"
Friday - Take cat to vet to have stitches removed
Saturday - Dance
Sunday - 4H meeting
Week of 5th - Follow-up on new meds Monday, therapist Tuesday, dentist Thursday, Soccer Saturday
Week of 12th - Grandma's birthday, Neurologist, and boys dentist on Tuesday, Soccer Saturday, Yallapalooza on Friday and Saturday (Will not be at dance that Saturday. I know I have KP coming up, if it is for the 17th could someone from dance get a hold of me to try to switch days?)
Week of 19th - Retina Specialist Friday, Soccer Saturday
Week of 26th - Soccer Saturday, 4H and Lincoln Museum on Sunday

That's the month of January as of right now. My schedule usually changes on a weekly basis or sometimes even daily so watch the blog for additional changes.

I have completed my series on blessings. Therefore, I encourage you to go back and read the series that began on Thanksgiving. You can read them all by going here: Blessings You may want to read from the very bottom up to get them in order. (You will have to click "older posts" near the bottom to get to the first one)

I never did remember what I was forgetting.

I hope everyone has a fabulous New Years and may 2009 find you and your family happy, healthy, and safe through it's entirety.

My New Year's Resolutions 2009

I don't usually like to do these but I do have a few I'd like to put out here this year. So here are my New Year's Resolutions for 2009 in no particular order:

1. Stay out of the hospital this year (obviously this one is not in my control but I hope it sticks).
   
2. Update my blog at least three times a week.
3. Work on keeping my temper under control with the help of the new meds.
4. Lose the weight that the steroids made me gain (I've already lost 18 of the 45 I gained).
5. Get some important paperwork done that I need to do now so that all I need to do is update it as things change (Been working on this for over a year now).
6. Stop using various words that I shouldn't be using anyway. I've gotten very bad about sounding like a sailor.
7. Write out something that occurred over the day that I am thankful for to try to remind myself that I am doing something right each day.
8. Try to get the back room of the house sorted out and the junk gotten rid of.
9. Finally get the front deck and front landscaping completed.
10. Rebuild our emergency fund to what it was prior to surgery.

I had to struggle a bit to come up with 10 so some are things I should be doing anyway but wanted a nice round number. Trust me when it comes to number 2 you will probably get at least one "Resolution Update" a week.

Happy New Year!!!

An Update on Team Larson

I hope I have all of the facts right but here is my understanding of what is going on.

I just found an update on my buddy Coleman. The first is the details to my understanding of what happened and below it is an update from Mimi whom is the mom of a little boy who has earned his angel wings and good friends with the family.

::Christmas::


His mom had posted a message Christmas Eve that things were not looking good and they spent the day at the hospital. They sent him home with an increase in steroids that day with instructions to return the next day. I hadn't seen any further updates from there but one of the other blogs I read had an update on him and that one of the original carepage mom's that I followed had put updates so I checked it out there. As of yesterday, still no update since he was air lifted.

I really feel for them because they knew things were not good and it would probably be his last Christmas so they had lots of really nice plans laid out to make it super special for the two boys. Family had come there from all over the states to see him "one last time" and then this happened. However, they are very strong in their faith of God so he is in good hands. :)

::Update::

Just a quick update hoping it will calm everyones nerves a bit...

As of last night Team Larson was spending time together. All 4 in a hospital room still, enjoying every second of it as again time is not a luxury they have .
Peggy has not been near a computer since they were taken there . I wonder what her email box looks like!!!!!

keep Lighting a candles for Team LArson as they only last for 48 hours

http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=csl

If you would like to light a candle for Coleman the group name is: CSL

I will update you if I hear more.

Don't forget to hug your loved ones today.

Asking For Some Emergency Prayers

I just found out that my little buddy Coleman has not been doing well at all. I knew he was having some speech and walking issues on Christmas Eve but I just found out that he was airlifted to the hospital on Christmas Morning. I don't have any other updates but will update when I know more.

You are in our thoughts and prayers little man. God is with you.

The Month in Review 12-28-2008

It's been a while since I updated and I plan on only making monthly updates from now on unless something major happens. So...

* It has been 6 months and almost 3 weeks since the resection of my brain tumor.
* It has been 2 months and 4 weeks since the completion of radiation.

Medically - Well, my appointment with my NS went as I expected... actually worse. John and I drove the 3.5 hours to Chicago only to find out he did not have my MRI or the report. (My GP sent it to him so who knows what happened with it.) Basically we were told it was a wasted trip and that he really wasn't interested in the report anyway just the MRI. (I meant to bring it and realized I forgot it when we got 30 mins out. If I had known they didn't have the stuff I would have turned around to get it.) It was mostly just a wasted trip up there. Now I have sent the information he wants to him and will be awaiting his call. Why he couldn't do this in the first place I have no idea. It would have saved us a trip.

I will get into more on this later but I have been started on the ADD/HD drug Adderral. This is helping my focus and energy A LOT.

With the FUBAR at the NS office, I have decided to talk with my Neurologist and see if he will take over my care full time now. I will be seeing him January 13th. Hopefully he will take me back on and I won't have to drive to Chicago anymore. Needless to say I wasn't too happy with the trip or his office for their lack of brains organization. Since dealing with major medical issues, I don't take much crap or lack of organization from ANYONE especially surgeons.

Emotionally - Since seeing a doctor about my "depression" and going on some meds I have been doing much better here. Something he said makes A LOT of sense. He said he believes it all stems from my focus/concentration issues. These issues cause me to work harder, thus making my energy level go down, thus causing me to be depressed about not being able to do anything, which causes the mood/temper. Since going on meds for it, things have been great. My energy level is probably twice what it was and very, very close to what it was before surgery. I can actually focus on things like bills, paperwork, etc without wandering constantly. My moods have been 100% better and I feel better now than I have in six months. There has also been another improvement in an area John is really happy about. (He actually turned me down the other night.) I hope this trend keeps up because it is making me feel great.

Mentally - This was very nicely summed up above. Basically, I'm not quite where I was with concentration but memory and focus have improved. I honestly think that some areas of my focus/concentration will never return. I no longer wish to do my income taxes by hand "just for the fun of it". LOL

Physically - I feel very good Physically. My energy has improved A lot and I can find myself being able to do the housework again and get into a minor exercise routine. I got a WiiFit for Christmas and I've been playing around on that. My strength is definitely not there. I can't even do a "Granny Push-up" let alone the 50 regular push-ups I used to be able to do. This will come back I am sure. It will just take some work to get my weak muscles back.

I have begun losing the 45 pounds I gained from the steroids. I've managed 18 already and still working. (I'm likely to have a beef with my GP about this before it is over. I realize that I am above my last weigh-in and I'm sorry I didn't visit at my highest weight... get over it.)

The hair is also coming in nicely. The entire left side is coming in nice and full and there is patches on the right side coming in. If it keeps up at this rate, I can hopefully expect a full head of hair again some day. And if not, I continue with my new trend. :)

Work/Play/Family - We had a very nice Christmas. I think everyone got most of what they really wanted and we enjoyed time together as a family. While on the holiday vacation we have gotten a lot of things accomplished around the house and had some fun playing games, chatting, and hopefully cooking before the holiday is over.

We will hopefully be going to the big New Years dance for New Year's Eve. I can't wait to go and will have to be sure and conserve my energy that day so we can dance the night away.

Well, I'm not sure there is much else to update. I hope everyone had a Merry Christmas and May you all have a Safe and Happy New Year.

Huggles

Giving Thanks, the Christmas Edition

Today I would like to give thanks to some very special people. I think you know who you are. Today on Christmas I give thanks to the greatest gift I have received and that is all of the people who support me through my blog and updates. You all keep me going, keep me positive, and keep me motivated. I love you all and I could never express just how much you all mean to me.

May you all have a safe and healthy 2009 and may I continue to be able to update you for years to come.

Love ya.