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.

I Have Been Very Busy

I just wanted to drop a few lines that I am still here. We've just been busy with getting ready for Christmas and doctor's appointments. I scheduled a lot of appointments over the holidays so I didn't have to take time off work but unfortunately, it's not helping me get things done.

I have some blessings to put in as well as some medical updates. With any luck I'll have time to do these on Friday.

I'll be in touch soon. Love ya all.

MERRY CHRISTMAS One and All!!!!

Christmas Comments | Online Mall

Giving Thanks, Christmas Eve Edition

Tonight I give thanks to the Heavens and God himself. He gives us life, guides our life with his eternal light, gave his only son to save us, and gives us hope each and every day.

As many know, I am not the greatest follower of the church but I am a believer in the light of our savior and the grace of his hands. I believe in miracles brought on by our Father and the joy he puts in our heart. I believe in his guidance and his forgiveness. Most of all I believe in him amazing power and that he knows what is best for us at all times. He challenges us and makes us become the best we can be. Sometimes we don't like the journey he puts us on, but it always teaches us things about ourselves and makes us better for it.

I am thankful and blessed for our Father and the journey he has led me on. I never believed I could handle this with the grace I have or touched so many people. I feel my life has finally been fulfilled and every day is a gift.

Giving Thanks, The Twenty-Seventh Edition

For my last Blessing before Christmas Eve, I wish to give thanks for all of my Prayer Warriors out there. I know there are hundreds that are praying for me and those close to me. Most of you I don't even know and will probably never meet but that doesn't make you any less important. You are the ones reminding God that we are not ready to give up this fight and pray that it is his will to keep me around here a little longer.

I know there are churches and individuals praying for me all over the world. We all know cancer holds no prejudices and neither does the power of prayer. Thank you to everyone who has been willing to pray for this little farm girl in Central Illinois who just happens to have brain cancer.

To God, Jesus, Allah, Budda, and anyone else whom you might pray to... Thank you for giving me the Prayer Warriors.

Giving Thanks, The Twenty-Sixth Edition

I haven't liked picking out individuals because there is no way I could possibly thank each and every person that I am blessed to know. However, one person in particular deserves a little extra spot in these blessings.

I know he will be extremely moved and probably embarrassed by me making this post but I wish to give a thank you to a special blessing that touched me this year. I have known of this young man for several years but it was only recently that he reached out to speak with me on a one-to-one basis. This is when I learned how amazing he is. We have since messaged each other on several occasions and each time I learn more about him and feel more gratitude for the friendship we have created.

I don't wish to betray his trust by posting messages he has sent to me therefore I shall simply paraphrase some things that have touched my life considerably, just as my life has touched his. From our many early morning/late night conversations, I give you a special blessing... Bookworm.

He has told me in many ways that I have showed him a side of himself he did not realized existed. He has learned to use every challenge big or small as a stepping stone in life. He credits me with teaching him how to deal with pressure and remain cool despite.

I have credited him with bringing me out of downs many times. Reminding me that life is a journey and we are all on different paths and stages. I fully believe that he will one day be greater than he is now at the age of 15. Last time we talked, he had chosen Engineering as a career to focus on. However so, I still believe that, even if inadvertently, he will help find the cure for brain cancer one day. Just as I have touched and influenced his life, he has mine.

To many more early/late sessions and many more PMs on Plano Hogwarts. I will never forget you or what you have shown me. Bookworm... Thank You.

Giving Thanks, The Twenty-Fifth Edition

Since I haven't wanted to single anyone else out, today I give thanks for something that has been very special to me and I have been very blessed with. Today I give thanks for my blog. Without it, I think there would have been times that I would have gone crazy because I wanted to get things out in an organized manner and no way of doing so. The blog has been a savior to me and allowed me to express myself as needed. One of my New Years resolutions is to try to be more consistent in my posting even if it is about "nonsense" things. I intended this to be a way of updating friends and family and spreading the word about brain tumors, brain cancer, etc. I'm not sure if I've fully done that but maybe some day it will help others. I really need to get better and not caring who is reading this and just putting in my serious feelings. We'll see if I can do this in 2009.

The other nice part of this blog is that even when I am one day unable to post, it will be here and can be updated to get a full look of the story. John can add posts (not that he probably will), Kat can add posts, and anyone John adds as an author can add posts. (sorry better get off of that track)

Anyway, to the thing that has kept me sane... thank you blogger. :)

Giving Thanks, The Twenty-Fourth Edition

Today's thank you goes out to several people who have gone out of their way to help or try to help us on this journey. I can never repay you all enough. Even though I've taken very few of you up on your offers for places to stay, help with my son, help around the house, etc, please know that just knowing all I had to do was get the word out that I needed help was a huge load off of my shoulders. Unfortunately, I am also a very independent person and letting go of anything is hard for me. I also know the path that this journey will eventually take me and I don't wish to use all of my help now when I really do have the ability to still do it. It will be hopefully many years from now before I need you all, but I will keep all of your names close. You have been my angels in waiting during this journey and I thank you all for your offers and support. If I haven't gotten to you yet, remember that I still know you are there and when the right moment comes, I'll be asking.

You all know who you are. Love ya.

Giving Thanks, The Twenty-Third Edition

Today I give thanks for my Medical Team. This team includes my Chiropractor, Neuologist, Radiation Oncologist, NeuroSurgeons, General Practitioner, and even my GYNE. I have been blessed with a fine team for the most part.

In no particular order:

My Chiropractor is fabulous. Not only does he take good care of my back and neck but he has taken a great interest in learning about my brain tumor/cancer and is therefore very good for advice and just to talk. I have often wondered if the injury that caused my whiplash was actually the first step in helping me find my brain cancer. Had I not seen him for this injury I may have never had the Trigeminal checked out and therefore never found the tumor. He is great and I thank him for his ear and the little device he uses called the Activator.

Although I have only seen my Neurologist once to this point, he is very good and he and I clicked very quickly. He was very upfront and honest with me when I saw him about the trigeminal and I know he was as shocked as anyone when we found out it was a tumor. I look forward to working with him further in the years to come.

My Radiation Oncologist is a very nice guy and from what we can tell so far, he did a good job. Even though my intuition still tells me that I made the wrong choice, I do trust that he did what he thought was right.

My many NeuroSurgeons have been an experience. Leaving out the first NS, I have had a very good team. My third NS was amazing and I'm really sorry he didn't do my surgery and therefore is no longer my NS. He and I clicked a lot and I think he was a HUGE part in convincing me to do surgery. I would have probably never done it if not for him. Even my current NS did a great job on the surgery and to that I owe him a lot. The outcome of surgery could have been so much different but I had a good team.

My GP has been with me for almost eleven years now and takes the time to get to know us. He sometimes jumps to conclusions but he always does it in good faith. He has assisted with coordinating tests and the like locally even though he gets little credit for it. He has made my life much easier as a result.

Finally, my GYNE is a wonderful man. Yes, he has nothing to do with my brain but when he found out he was very sympathetic and asked to be kept up to date. I notified his office before I had surgery and they all put me on their prayer list. His nurse was very shocked when I called her the afternoon of surgery to let her know it all went well. She said that the doctor had asked if anyone had heard several times that afternoon but none of them truly expected to hear until the next day. Can you see the heart this guy has?

So to my Medical Team.... Thank you.

Giving thanks, The Twenty-Second Edition

Today I would like to give Thanks for someone I've never actually met and probably never will. However, I know him very well through the CarePage his mom writes. Actually, I guess I should give thanks for all of them not just him. Today I give Thanks to Team Larson. Peggy, Scott, Coleman, and Caden have been an important part of my life since I found them a little over a year ago.

For those of you that don't know, Coleman is five years old and has brain cancer. Coleman has been fighting this beast for half of his young life. He has undergone numerous rounds of chemo, undergone radiation, had a stem cell transplant, and yet he fights. The most amazing part about this young man is his undying faith and servitude in our Father. He understands way more than any five year old should and his faith has never wavered. He is an inspiration to me to not only fight the beast in my own head but to never give up. He has shown me that faith can take you very far in this journey.

Although Coleman's journey has taken a turn for the worse, he continues to fight. Through his frustration, his difficulties, and his journey his faith never ends. Coleman is an amazing little boy just as his brother Caden. Caden has seen more with his little eyes than should have to be seen but he holds on to the light and as they say "Team Larson Nevva Givs Up!!!"

Continue to fight little man until God gives you your angel wings. You are in my prayers and thoughts.

Giving Thanks, the Twenty-First Edition

Today I give thanks to all of my friends on Puzzle Pirates. You have all been there with us through the whole journey and never complain when we disappear for weeks at a time. You guys are all great and I'm not sure what we'd do without you.

So to Zowee, Tim, Luno, Indi, Skippy, Katke, Tishi, and all the other pirates that sail on the Cobalt Ocean. YARRR!!!

Giving Thanks, The Twentieth Edition

Today I give thanks for the person that push convinced me to start the blog in the first place. Her and I go back only a few short years but we have become very good friends in that time. I remember that she was as shocked as anyone by what I told her and really helped me work through some things. After we talked late in the night for the fourth or fifth time she suggested the blog to help me get my feelings out. She also agreed to update it for me when I couldn't be here to do so.

Therefore, to the greatest pirate on the cobalt ocean... thank you Kate.

Giving Thanks, the Nineteenth Edition

I have read from many others who are traveling a similar journey as myself, that employers/managers/bosses can make this journey easier or downright unmanageable. I have been blessed with the boss that understands and cares. I never hesitated about making sure my boss was in on what was going on from the very beginning. I knew he would never hold it against me and that I needed him to know what was going on because this was not a journey I would travel alone. This is why he was called right after I spoke to my husband. He knew something was wrong when I told him my doctor wanted to see me after my MRI. He was certain something was wrong when I asked him to call a meeting so we could talk. Sometimes I regret telling him over the phone because I think that was the wrong way to do it. However, he knew and was behind me 100% right from the start. He allows me the flex time I need to make doctor appointments or whatever and he doesn't say a word if I go a few days with few accomplishments because I sought someone out to vent. He understands that it is as much of an emotional roller coaster as physical. Speaking of physical, he even brought me in a cot to rest on if the hardships of the day became too much when I came back from surgery.

He is never shy of offering rides to doctor's appointments, to pick me up at my house (even though it is 30 mins one way), or telling me to take the time I need. I could hear the relief and shock in his voice when I called him the night I had surgery to tell him everything went well. What that does is proves that he is far beyond a boss but a very caring friend.

For the many offers to help with doctor's appointments, rides, or just an ear... Thank you, Jim, for everything you've done for me this year.

Giving Thanks the Eighteenth Edition

Today I wish to give thanks to another angel sent down to me directly from the man above. This person is a co-worker that actually moved from another company within our corporation not long before I was diagnosed. Little did I know, she would become one of my corner posts in this journey. She has a lot of experience and is very good at recognizing when I am having a bad day. I have spent many hours at her desk chatting with her when I am having a rough time. She has opened my eyes to many ideas that I was too close to see and helped detour me when I was near self destruction. I truly can not find the words to express how much she has come to mean to me in the short time I have known her.

I am sure I have talked to her about medical things to the point she wishes I would go away but she never shows it. Instead she offers the piece of advice, reassurance, or redirection she knows I need. My path led me to her for a reason and I am so thankful for her.

To, Robyn, my angel with the patient ear, Thank you.

Giving Thanks, the Seventeenth Edition

Another person that has meant a lot to me through this ordeal is my therapist Randy. He does not realize how much of a blessing he really is to me. I honestly believe that he was sent to me as an angel straight from God.

I dealt with depression and anxiety issues for almost 10 years. However, I was stubborn and wouldn't pay the money or admit that I needed help. I could handle it on my own... or that's what I thought. Well, the anxiety came to a head in 2007 and John pretty much said, get help or else. Therefore, I finally sought out someone to talk to. This is when I found Randy. I had said many times that if things go bad, I'm never going back. John agreed with this. However, I didn't have to worry one bit. Randy and I hit it off immediately and I was anxious to see what he could do for me. We had been talking for around two months when I was diagnosed with a brain tumor. I remember the day I told him. He was floored... (For the third time since I had been seeing him.) He often found me as an unusual patient because I was not the typical. However, he's talked me through a lot and helped keep me sane. He's reassured me when I needed it, discussed options when I was confused, and watched me for the dreaded changes I was so afraid of. During all of this, he became a friend I could deeply trust.

I remember the very first time I saw him I went in with the impression that it would be my only visit to him. That was quickly changed when I met him. He and I hit it off very quickly and he was very easy to talk to. We had successfully gotten to know each other and had discussed MRIs and what my trigeminal injury might be. I remember very specifically discussing the possibilities that my Neurologist had given about what might be going on in my face/head. We both agreed that it was probably just an irritated nerve. However, my intuition is usually spot on and it told me it wasn't just that. This is why I went in to the doctor after my MRI expecting to be told I had MS. I remember vividly telling him the only thing I was not prepared for was to be told I had a tumor on my trigeminal. It was a remote possibility according to my Neurologist.

The Monday after I found out I had a brain tumor, I had another visit with Randy. I remember asking him if he remembered me telling him what the one thing I was unprepared for was. Of course he remembered but was still floored when I told him what I found. He immediately went into friend mode but also evaluated my mindset as he did so. There have been many times over the last year that I have relied on Randy to help me out and he is always sure to be there.

Randy, thank you for everything.

Giving Thanks, the Sixteenth Edition

Another person I should have really spent more time giving thanks for is my wonderful son.

No eleven year old should have to go through what he has this year. I honestly do not know how much he understands what is going on but I do know he worries about me a lot. He has also, unfortunately, been the recipient of a lot of my mood swings the past several weeks. I think he understands that I don't mean to be that way but it certainly doesn't make me feel any better. I truly love him. He is a wonderful young man.

Speaking of my wonderful young man, he is one of the most compassionate kids I have ever met. He would give you anything if you asked him. He's always been that way. I have to say it is a trait he got from me. I really look forward to having the opportunity to watch him as he continues to grow. He is truly a blessing to me and one of the many reasons I fight this brain cancer and want to come out on top.

He is also a source of comic relief for me at times. I remember after I told him I was going to be having surgery and would have some metal in my head. He asked me just as straight faced as he could "Will magnets stick to your head?" It was a tension breaker and became a running joke with all of us. I think it was truly an innocent question but for a mind to come up with that as the only reply... Ahh he's my boy. He's also a lover. Even at 11 he will take every opportunity to come curl up in my chair with me or give me a hug or kiss. Unfortunately, he's as big as I am and the two of us in a chair get a bit... errr... well he squishes me.

Anyway, he is a great boy and he helped me out a lot this summer while I was recovering. I know I didn't show my appreciation enough but he still keeps giving.

I love you, J.

Giving Thanks, the Fifteenth Edition

I'm going to step back now and give some specific thanks to some whom I either skimmed over or didn't give a very good tribute to. Today is the first of those.

I give thanks for my wonderful, caring, and tolerant husband. He has been tolerant of so much over our 12 years of marriage and I sometimes forget just how lucky I am to have him. I'm not an easy person to live with some most of the time. However, he has done so with no little complaint. Some of my "rules" although in an attempt to protect him, were uncalled for as are some of my extreme views. Sometimes I tend to forget that he is also an adult but I think I am getting better. :)

Over the last 12 years we have been through a lot together. We dealt with the typical "start a family with little to no money," buying a home, "redoing the bathroom" (Some say this is a true test of a marriage), infertility, a heart scare, and now brain cancer. I believe that we have proven over these years that in good times and in bad, we were meant to be together. He's put up with crazy rules, anxiety issues, lots of worrying over me, and lately the moody *bleep* I've become. However, he still loves me and reminds me every day how much he needs me in his life. He just doesn't realize how much more I need him in mine.

I love you, John.

It's a Six Month Review

It has been 6 months now past my brain surgery. Part of me finds it very hard to believe it has been that long and another part of me say "is that all?" However, it's a milestone to me. :) I have not posted and updates for a while (I think November 26th was the last one) and all I can blame it on is being busy... sleeping. There hasn't been a whole lot to report either but figured this is a good time to get in a quick report.

• Today is 6 months and 1 days since the resection of my brain tumor.
• Today is 10 weeks since the completion of radiation.

Medically - My NeuroSurgeon hasn't bothered to contact me since my last MRI but I continue to take my knowledge of my tumor and the Radiation Oncologist's opinion on it to heart. My brain has had a lot of stuff done to in in 6 months and if the radiation worked, we hope to see a lot of dead cells still up there. (Which we did) Over the next few weeks I hope to get some more answers and may end up looking for a new NS depending on how the appointment with him on the 22nd goes. If all he does is what I suspect, he will not be my NS much longer because I refuse to drive 3.5 hours one-way just to be told what I already know. If he is unwilling to start scheduling phone consultations for future visits, he will no longer be my NS. I'm not a big fan of the person that schedules his stuff anyway. (The NS up there I liked had a wonderful Resident that handled his stuff and I really miss him because he was great.) Unfortunately, the NS I really liked isn't really taking cases anymore and is moving everyone around. Thus why I am now with the guy I have. Don't get me wrong, he did fabulous on my surgery but his "bedside manner" leaves a lot to be desired.

Emotionally - I've been having some very apparent issues with depression of late. I have had trouble with it in the past and it does raise a lot of questions now. My tumor is/was in an area that can affect moods and things like depression and anxiety. Therefore, it is quite likely this is an effect of surgery/radiation. However, things are getting a bit out of control. The most disabling thing is my temper. I fully believe this is radiation caused because I didn't have any of these issues after surgery. Basically, my temper gets shorter by the day. I know it's happening but it's beyond my control to stop it. My mood will go from cheerful to "growl" in 2.2 seconds and be set off by absolutely nothing. It trully makes no sense. My therapist had me do some tracking this week to see if there is a pattern. The only pattern I found was that it's almost constant. Over the weekend I was so bad I was feeling sorry for the boys. They couldn't do anything right. I have also found that when I try to control it, it eventually catches up to me and I completely lose it. I used to be one of those people that almost never lost their temper. It would take A LOT for me to be pushed to yelling and even more for me to actually lose control. I think only two people had ever seen me actually lose it. Now it takes very little. I try to control it as much as possible when I'm not at home but then I find myself extremely irritable at night and even to the point I lose control of other emotions. Anyone that knows me, knows this is NOT me. Now some people would say that this is all understandable given what I am going through... Yes, I agree but why all of a sudden and during an "in between" period. There's nothing going on that should be causing me problems.

Anyway, my therapist and I talked again today about it and I will be seeing another doctor on Tuesday to discuss meds to help "take the edge" off. I've never been one that is cool with meds but at this point I am willing to try it if it gives me back a little control.

Other than the temper and the issues with trying to control it, I'm hanging in quite well with the emotions. I do what I need to do, when I need to do it and I'm still stable with handling things. My intuition still tells me radiation was a mistake but it doesn't yet have grounds so I just have to brush it aside. It's not like we can do anything about it now anyway.

Mentally - As the weeks pass I continue to notice issues with my memory, focus, and concentration. It was very apparent when driving on ice the first time this winter. My focus is just not there. I found myself darting instead of focusing solely on the ice and road. It's nothing that can't be worked around but again it's something we have to watch closely. I find it harder to do just about everything. I have trouble sitting and typing out emails and blogs, doing things at work, even doing fun things that I enjoy. I've learned I have about 5-10 minutes in which I can fully focus and then it starts fading around the edges. I guess what I'm saying is if you are talking to me, say the important things in the first few minutes or the odds of it sticking are pretty slim. Also I guess this is an apology if you are talking to me and I wander off. The only thing I know to compare it to is Attention Deficit Disorder (ADD). Ahhh, the changes. :)

Physically - The energy level has leveled off at about 70% of where I used to be. It's been here for a few weeks now so there is a possibility this will be all I get back. I'm trying hard to learn at what level I can actually push myself. I seem to do well the early part of the week but by Wednesday I'm dragging. I have work next week but then I will be off for two full weeks for Christmas so I'm going to experiment a bit with my energy levels during that time. I've been wanting to push myself a bit more hoping that will help with my energy but I need time off after doing so. Therefore I think I will be concentrating hard on this over break when I can listen to my body after doing so.

I have had some headaches of late but I think it's just from the emotional things mentioned above. The jury is still out. It's not like I just had brain surgery six months ago or anything... LOL

I have a few areas of hair that are coming in quite nicely now. I'm happy about this because we're not even 3 months out yet. I think this may be a good sign that at least a good portion of my hair will return. There are still some very large spots completely bald (burn bald as I call it) that I fear may never return but if the rest of it goes like it is, I may be able to go hatless by the end of next year. We'll see.

I should mention that I am able to exert large amounts of energy when I need to but the next day I am almost comatose. I was able to dance again last Saturday and with a caller much faster than our home caller. It was great but I rarely got out of the recliner on Sunday. (This is what I am going to attempt to improve over break.) I know many have told me that I'm doing very well considering but I'm stubborn and I don't want very well. I want to get as close to myself as possible and I am frustrated that I am not getting there. I knew going into this that I would not be the same when it was all over but I guess looking at that in reality is another thing completely.

Work/Play/Family - The boys have had to put up with a lot of crap from me over the last few weeks. Between the loss of focus and the zero to *bleep* in 2.2 seconds, I'm not an easy person to live with right now. Several times John has had to tell me to go cool off. I'll be honest, if I were the boys this weekend, I would have slapped the crud out of me.

Other than this, they are doing well. My son is working on bringing a few low grades up and John is trying to get the house back in order after the fall. He's had to take on twice the work since my energy pretty much floors me at the end of each day.

I did enjoy dancing Saturday night. It always refreshes me. This is also one way I know that whatever is going on in my head is affecting me more. I was snippy more than once at dance and really snippy after we left. So for my fellow dancers, I apologize if I was snippy with any of you Saturday night. (This goes for anyone at work as well. If I am snippy I am soooooo sorry.)

This weekend we will be busy and it's a good thing next week is a short one for me. My son has soccer at noon and John's Christmas party is that night. I am sure Sunday will amount to staying in my recliner.

Next week I will only work four days and then I will be off until the 5th of January. Yay!!! I also have five hours of vacation to get in there so it should be a light week. Of course, At home I still have Christmas cards to make out, thank yous to write (that are now 6 months overdue... sorry everyone), Christmas shopping to finish, and don't even get me started on wrapping...

Oh, last thing. I want to update everyone on the friends I have mentioned over the past few months. First Coleman (5 years old brain cancer). Coleman is still not doing well. He has been having a lot of difficulties with some regrowth and his blood counts are really bad so they are having to skip his next round of chemo. He is also going through a lot because of being on the steroid to reduce swelling. He can barely walk right now. Second David (38 lemon) is also not doing well. He has been living with his mom for some time now and can barely communicate anymore. It is just a matter of time really. Lastly, the one person with some good news to share is Nyckie (friend in IL). First the bad news, they suspect her latest MRI is showing tumor regrowth. They will wait three months and try again. The fact they are waiting three months is a good sign. Now for the really good news. She found a job at the American Red Cross!!!! Congratulations Nyckie!!!! Please keep everyone in your thoughts and prayers this holiday season. I love you all!!!

Ok, I'm not sure I can ramble on and bore you much more.

I have appointments galore until the end of the year so if you can't get me over the holiday, I'm probably at a doctor.

16th - Psychiatrist
18th - Therapist
22nd - NeuroSurgeon in Chicago
23rd - General Practitioner
26th - Therapist
29th - Eye doctor

I might be adding a few before it is over as I need to see my Neurologist and possibly look for a new NS if the appointment doesn't go well on the 22nd.

There will be plenty of updates over break but, Merry Christmas everyone and Happy New Year!!!

Giving Thanks, The Fourteenth Edition

I will get some funny looks for this post but, I am thankful for the ball that hit me in the face, the brain tumor that was discovered, the surgery that went so well, the radiation that taught me what I am made of, and the cancer that has pushed me beyond what I felt I was capable of. So yes, I am thankful for this past year and a half.

You see, the ball had angel wings. I have no doubt in my mind of that. Had I not been hit in the face, the tumor would have never been found. I have been told that chances are good that by the time I started having problems from this tumor, they would have gone in and it would have been a grade four tumor and they start off by giving you 6-8 months. Anything over that is borrowed time. So it is quite likely that the ball prolonged my life. By how long, we will never know but I see it as a blessing.

Although it was long debated by me and my doubts came and went, the surgery was a huge blessing. It did many things. It made me face my fears of anesthesia and surgery, it removed the pressure that was building in my head, and it found that this tumor was nothing to take lightly. More importantly, it prepared me for what was to come. Five years ago, I wouldn't have been able to deal with the loss of any of my hair. I had long, beautiful hair and I was determined that would never change. After they shaved part of my hair for surgery, I realized I would deal with it. It would eventually grow back and it appeared that it would be in better shape than before. I COULD deal with losing my hair. I could also have major surgery and come out on top with no complications. The pain nor the recovery was as bad as I expected and I truly came from this feeling like I could do anything.

Radiation... as much as it's hard to find anything good about it, there is. It has successfully pushed me and made me accept myself as who I am and see myself through other people's eyes. It doesn't matter if I look like a complete freak without my hat. No one cares. It's me they care about and I've come to find that it's what I care about as well. The same girl that five years ago would have freaked to even cut her hair to shoulder length, is now sitting here looking at her sparse hair and many bald spots accepting that if it doesn't grow back... so be it. If I live long enough to realize it's gone forever, then I have a lot to be thankful for.

Last but not least in this list is cancer. The thought used to freak me out. I would wonder how people could deal with it and say many times that I couldn't/wouldn't. Here I am 29 years old, past surgery, radiation, and watching cancer. It's a smack in the face but at the same time it's proving that I'm stronger than I thought I was. I sometimes find the reactions from people a little ironic when they talk with me after everything I've been through. Many say "I could never handle it the way you are." Just five years ago, I was that person saying the same thing. Now look at me. People are being inspired by me... little ole me. I never in a million years truly believed I could make a difference in anyone's life but I'm seeing that because of this beast we call cancer, I am.

So, I am thankful for the journey I began in July 2007. Through it all, I have learned a lot about myself, my friends and family, and have found determination I never knew existed.

Giving Thanks, the Thirteenth Edition

I'm not sure how to start this one other than to simply say, "Thank you for my love of Harry Potter and the forces that led me to find Plano Hogwarts." Yes, we are a group of Harry Potter fans but we are also so much more. We are family and I am so ever thankful for all of them. I think, being one of the older members, some of the younger ones see me as a big sister and frequently ask for advice. (Ok some of the older ones do too. LOL) Truth is, it is my home away from home and the fact I didn't scare any of them off and they have stayed with me, means a lot to me.

One of the things I opened my email up to shortly after surgery was a wonderful banner they made. I think it says it all and I was so excited to get back to them when I felt up to it. So, I will now say, "I am so ever thankful for all of my family on Plano Hogwarts. You all know who you are but Ann, Cali, Sarah, C, Tiff, Amanda, Nish, HM Shivani, Rae, Chloe, Kelley, Hillary, Wonderboy *wink*, and everyone else... BIG HUGGLES!!!"

Giving Thanks, The Twelfth Edition

Continuing down the friend path, today I give thanks for all my FLYPals. They know who they are. These ladies have been my friends for many ranges of time and their concern, prayers, love, and assistance has been helpful in more ways than they will ever know. I am a firm believer that they have a direct connection to God because when they pray, he replies.

A lot of these friends live up in Chicago and when they found out I was going to be having surgery there, a FLYfest (gathering) was immediately discussed and offers for a place to stay were sent out in the plenty. I had a great time meeting with them the night before surgery and they did a great job keeping me sane as the time ticked nearer. Some sent me tokens of friendship, books and still others came by to visit at the hospital. (Love ya Jules) They listen to my rants, concerns, and just updates. They are quick to reply with little comments, cards, visits, etc and it brightens my days more than they know.

Today I am truly thankful for my FLYPals and I can't wait to see some of you on the 22nd. *Huggles*

Giving Thanks, The Eleventh Edition

Since I had such a great time last night at dance, I can not think of a better place to go next with my Thanks. I give thanks for John and I discovering Square Dancing and all the friends we have made there. We always have a great time and are surrounded by wonderful people while we have a lot of fun. It is also good for my brain and to get my physical energy back up. I still struggle with doing more than a couple dances but I have a blast when I do.

John and I met this wonderful group almost three years ago when we decided to "celebrate" our tenth wedding anniversary all year long. John found a flyer for a free dance night. We loved it so much we began lessons. As they say the rest is history. There have been a great many times over the past two years that I have been really down in the dumps and dance has been able to let me "forget" life for a while and just have fun. For this, I am truly thankful.

Giving Thanks, The Tenth Edition

For the first of my thanks for friends, I am going to go with the "oldies". I don't mean old in age but I mean friends I have had the longest. These friends go back a ways, some as long as junior high. Kim, Jamie, Heather... this would be you gals. :)

Although most of us have lost touch outside of email and myspace, we have touched base many times and Kim and Jamie even gave me a huge break in recovery by spending the afternoon chatting with me and bringing drinks and pizza. I had a lot of fun that day girls. I know for a fact that one of them checks my blog frequently and the other one gets it mailed to her... It's hard when you grow older and the chaos of the real world makes getting together difficult. I miss you guys.

BFF

Giving Thanks, The Ninth Edition

Today I am giving thanks for a group of people and then I will split them a little more in future entries. Today I want to give thanks for all of my friends. These friends are both "real life" and internet and they all mean the world to me. They are there with a change of subject, open mind, listening ear, or just rolling of the eyes. You don't know how important your friends are until you are faced with your own very destiny. I don't know the exact words to it but one of my favorite sayings is something like:

Friends come and go but they all have a purpose, be it for a Reason, a Season, or a Lifetime.

So the next entries will be dedicated to all of my friends.

Giving Thanks, The Eighth Edition

Today I would like to give thanks for my best friend. Jessi and I go all the way back to the sixth grade when I moved. We weren't always "best" friends but as we've matured our friendship has grown and I can't think of a better best friend to have. She and I have had many long talks, she has corrected my poor grammar at least a zillion times, and she doesn't freak out when I get into my... "will you watch over my boys for me" moods. She is one of the many reasons I have been able to handle the last year with poise and probably a big reason I haven't been driven to drinking. LOL Despite being very busy with her five kids, she is always able to bail me out when I need an ear, a smack, a laugh, or a babysitter! (Then again most of the time it's simply a roll of the eyes.)

These blessing posts are a little short so I'm going to start adding more to them if I can. I am going to share a story about Jess and I's friendship. When we were in the... oh who knows what grade it was... we actually dated the same guy and almost exactly the same time. For most friends this is a major bad thing but for her and I, it brought us closer together. We actually dated the other ones ex boyfriend on two different occasions and we dated best friends at one point. (They are no longer dating and the guys are no longer best friends.) To top it off, I set her up with the said best friend after I had lovingly told her previously how much of a jerk I thought he was. (He grew on me later.)

Anyway, to the momma of all my little nieces and nephews... Love ya, Jess!!!

Giving Thanks, The Seventh Edition

Today I wish to give thanks for my family. Despite many differences of opinion, they are very important to me as I continue to travel this journey we call life. They are there when I need them and have come to my rescue many times over the last year. So I give thanks to my Mom, Dad, little Brother (even though he towers over me), Grandma, and all my other family members who have been there for me.

I am backtracking a bit and adding some things to these posts since they look out of place in my blog. One of the things that touched me the most this past fall is that my mom and dad came over and mowed our yard and my mom helped me give my house the cleaning it hadn't had since May. It was refreshing to have it done and one thing checked off the list. My mom has also been making my "trendy" hats to keep my head warm this winter. Everyone at work seems to like them a lot. :)

Giving Thanks, the Sixth Edition

I am thankful for my wonderful co-workers. I always knew that I worked with several magnificent people but I never realized just how wonderful until I was diagnosed with a brain tumor. This was when everyone rallied beside me. They were the ear when I needed to talk, the pat on the back when I was feeling down, and the encouragement when I doubted myself. They never doubt that I am doing the right thing and they stand behind my every decision. Lately, they have made me laugh about all my crazy hats and odd outlook. You do know that laughter is the best medicine. :)

I have a few special call-outs to some of my co-workers. First to Robyn. I don't think she realizes just how much our long talks mean to me and how much it keeps me focused. She is that friend I have needed that I can go to when at work and before we are done talking, whatever was bothering me has disappeared. Thanks Robyn.

I also have to mention my "mom at work". Sharon is the sweetest thing and was actually one of the first people I told about my brain tumor. Poor thing, I went to her while she was eating lunch and just said... "If I tell you something major will you promise not to freak out?" Of course, she said yes... until I told her I had a brain tumor. She nearly hit the roof. However, she stood behind my decisions all the way through and that meant a lot to me. She also helped me see things from a different perspective several times. Thanks Sharon.

It wouldn't be winter and hat season if I didn't mention Mac (Sorry I'm not sure how you spell your name). He is sure to tell me how much he loves my hats each and every day. As much as I hate wearing them, he brightens me up and makes wearing hats not so bad. He is certain I will start a trend of women wearing hats. We'll see if it works or not. Thank you for making me smile, Mac.

Lastly, but not leastly, the IT team. I know I have not been the easiest to work with and probably haven't pulled my share between doctor's appointments and the like but you have always been patient and I appreciate that. I know my "mood swings" have been misdirected a few times and I'm glad you know not to take offense to it. You were also the first to send me something when I was in the hospital and I absolutely love it. Thank you, Guys!

I really can not express how much all of my co-workers mean to me. Even those on other shifts that I don't see often and some... I'm ashamed to admit... I don't even know their name, are quick to give a hug or ask how I am doing. Even though things at work could be smoother, I know when I walk into the door I'm loved by lots. Thanks Everyone!

Giving Thanks, The Fifth Edition

Today I give thanks for my job. I have now been at my job for 9 years. Although I sometimes don't like the direction things are heading and I miss the old days when we were able to manage ourselves, I am thankful for my job in this time of economic downturn.