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.
Tuesday, January 27, 2009
I really apologize for not posting this all earlier but I've had some energy spikes and had to use what I had. :)
Thursday, January 22, 2009
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*
Tuesday, January 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
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?
Ok, I think that's enough for now. We'll see how things go in the next few weeks.
Sunday, January 11, 2009
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…
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).
People Against Childhood Cancer
Alex's Lemonade Stand
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
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.
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!!!
Saturday, January 10, 2009
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.
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.
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.
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.
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.
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."
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.I'd have to say I hit 2008 pretty close with it. That doesn't answer my question though, did 2008 start like 2009?
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.
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
Thursday, January 8, 2009
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.
Wednesday, January 7, 2009
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.)