Sunday, November 29, 2009

Day 5: Mostly Same Stuff, Different Day

Not much happened today. We did meet with a resident from Dr. Lang's office. He suggested that Andrea would probably be best served with outpatient rehabilitation, as opposed to inpatient and would be ready for discharge tomorrow. He was basing this opinion, I think, based on his visits of Andrea, which is usually during times when she is at her best behavior (lots of energy, no pain). However, he never seems to see her during times when she is in great pain and requires morphine to quell it. I was not in position to question this analysis since he came around 6 am, which is around the time I just woke up (Andrea for some reason was up and full of energy way early before I was). Regardless, I talk to a doctor from the physical rehab clinic here, who saw Andrea on Friday, and he came to a different conclusion. He felt that she would be best served with inpatient rehab, as opposed to outpatient. We'll see how this plays out tomorrow. I bought two tickets back to Dallas through Southwest for tomorrow to make sure we have somthing lined up in case we do get discharged.

We did have the cinematic movie moment for this continuing saga today. Andrea and I went walking around the hospital. We ended up in this place called Kim's Place, a place for the under-30 cancer crowd to hang out, play video games and get free soft drinks and food. Nobody was inside so they let this 40 year old square inside with his 28-year old hipster wife. We played against each other in one of those car racing video games, which I won... Just barely. We looked at some of the books they had there. I was looking through this Ripley's Believe It Or Not book that was just disgusting. Then I noticed a jukebox. I walked over to it and noticed it had some Dave Mathews CDs, Andrea's favorite singer. So I put on the song "Crash". Andrea then just started to sing it word for word, as if nothing had happened to her. She let go a few joyful tears since she realized that she can still remember and sing along with the songs she loved. It was a good moment to be around. You had to be there.

Saturday, November 28, 2009

Day Four: What happened on Day Three?

Ok... I'm very late with this update. I blame it on the Thanksgiving turkey. I did want to write this out last night, but Andrea wanted to go to bed early. When I started typing, she gave me the most nastiest look I had ever received. So I put the computer away and said "Sorry" and then went promptly to sleep.

Yesterday, the bandage came off. And she has a beautiful line of sutures on the top of her head. Doctors and nurses everywhere here say that it looks really good. I think they were admiring Dr. Lang's handiwork. I jokingly mentioned we should take a picture of it and put it on the blog, and she indicated that she wants to do it. I'll try to talk her out of it, but she's been very stubborn lately.

Andrea also met with a physical therapist. They gave her a walker and she loved it. We were able to walk around the floor a few times for her to get used to and get some exercise.

We also found out what the plan is from here. Andrea will be transferred to an inpatient rehabilitation hospital in Dallas. We are hoping she will be transferred on Monday or Tuesday. I'll make the "official" announcement when we know when and where.

For today, the morning was a bit trying for her. She's been struggling with some pain in the head. The nurses keep providing her with morphine to help quell the pain. The morphine just makes her tired. And so she slept a lot this morning, not really eating her breakfast or lunch.

But Laura Carnes showed up, and that brightened Andrea's day. We all walked all over the hospital. Andrea used her new walker and wanted to walk everywhere. And we walked as much as Andrea can. Then we headed back to her room.

She's been in good spirits ever since. She is finally using the walker to use when she is going to the bathroom. She ate all of her dinner. And is burping a lot from all the diet coke she's been drinking.

It's slowly getting better. I have to keep reminding her slowly but surely she will get better and better.


Thursday, November 26, 2009

Day Two: Out of ICU

Now she is out of ICU. She's in a room that is quieter and has more light control.

The nurse her gave her some goals when she arrived.
  1. Call, don't fall.
  2. Pain control
  3. Eat
  4. Pee and poop
  5. Walk
  6. Go Home! :)
Right now she's sleeping after eating her Thanksgiving meal.

Earlier in the day, She got to see Pope, Fran, Leigh, Alicia and Amy which brought her spirits up. Then Andrea and I started talking. However, I was the one doing all of the talking. I told her about the "lightheaded" joke I made in a previous post. She expressed her disapproval (Oops. My bad). I proceeded to playfully pick on her, like I usually do, since I had the upper hand by being able to talk. But she had one trick still in her arsenal. She proceeded to give me the middle-finger with her right hand. That made me so proud of her. Not only did she still have the ability to show me the middle-finger, she did it with her right hand which is controlled by her left brain (the side that controls motion on the right side of the body and where the Snarla resided). Snarly could not take that away from her. So it was a good day overall.

I'm not sure how much longer she will stay in the hospital. The pamphlet they gave us before the surgery implied that she would be discharged tomorrow. But the nurses have been suggesting that she will be here through the weekend. I kind of hope she stays one or two more days. She is still struggling with a lot of other things that she may not be ready for the real world out there.

Again, I'll keep you updated.

Wednesday, November 25, 2009

Day One: She Walks!!!!

Andrea had a rough night. A reminder that although Andrea's surgery went very well, she is still not completely out of the woods yet. She seemed to suffer from periodic muscle spasms in her arms and legs or it was part of a seizure. Andrea is currently on anti-convulsion drugs, so they might have been muscle spasms. Regardless, they seem to have happen every 3 hours (roughly) and made it a rough night for both of us (mostly for her, of course).

However yesterday and today she was all smiles. I was able to read her several jokes from this joke book her friend gave her (thanks Paul). She just laughed and laughed that I had to stop because I thought she would strain herself too much. Her parents came in to see her this morning and she was all smiles. She saw her sisters, Leigh and Alicia, and she was all smiles. I fed her a bowl of warm chicken broth, and she was all smiles. I never seen someone so appreciative for a bowl of nothing more than chicken broth.

The ICU nurse and I were able to get Andrea out of bed, actually Andrea did it mostly on her own, and she got to walk around a little. When she stood up Andrea was a little lightheaded (no pun intended), but she was able to recover and walked around for a little. Andrea then sat down in a chair and ate some pot roast, broccoli and macaroni and cheese. She basically fed herself, with me helping her cut some of her food. After I came back from getting lunch on my own, I found her standing. Andrea seem to just appreciating standing where she was.

Right now, she is sleeping with a "Law and Order" marathon playing on the TV above.


Tuesday, November 24, 2009

Things still look good

Just a quick update. Andrea is still doing well. She is very tired and at times seems irritable. To me that is expected since she just had surgery and they are pumping her with steroids to keep the swelling down.

She's not saying much. She seems to only say about one or two words at a time, if she does say anything. It makes communication just a little difficult.

She's tired. I'm tired. It's been a long freaking day. I need a nap.

She's in ICU now


I'm currently sitting next to Andrea. She is sleeping. She has a big, gigantic bandage on her head. If I added a few blue lines on it, it would start to look like she was an extra on TRON.

Anyway, the doctor said that everything went very well. They were able to remove a lot of Snarla (not sure of the percentage). The oncologists will now analyze it and determine what the next stage of treatment should be. She is talking very slow. We're not sure if this is a result of the tumor removal or just her being very groggy from the surgery. We probably wont know until 2 or 3 days after the surgery.

The family has been able to see Andrea. She first saw me. She smiled and tried to cry at the same time. Then her father came in and we both held her hands for a good while. You can tell she was very happy to see the both of us. After Pope left, Amy came in to say hi. She smiled at her, then looked at her, took a deep breath and said "Laura." Amy and I just looked at her, both thinking "Uh... Ok. We'll play along." And then Andrea smiled, laughed and said "Amy". Amy and I realize that the sense of humor part of her brain was not removed and were somewhat relieved. Fran and Leigh came in soon afterward. No jokes occurred during these visits, probably because she used all her energy "Laura" joke.

I plan on being here all night. My updates may be fewer now, but I'll try to put one update a day until Andrea can get back here and unleash her wit on you all again.

Andrea and I received a lot of encouragement, well-wishes and prayers from so many people over the past few days. I want to thank you all for your support. We still have a long way to go, but the first big step is over.

1:25 pm Update

The nurse who was working Andrea's surgery came out to tell us they are now closing up. She is doing fine and everything looks good. I should be able to see her in an hour.

12:15 Update

The nurse said that Andrea's vitals are good. It seems they have taken out most, if not all, of the tumor out. She may have entered the 2nd sleep phase. We're not absolutely sure, but the nurse said that she didn't hear Andrea speaking, so that is a good sign that she is asleep (did I ever mentioned that she talks... A LOT).

Anyway, if this is the case the surgeon is now starting clean things up. Then they have place the skull back in place an secure it with a very thin titanium metal plate. Once that is done, they patch her up. Then it's off to ICU.

Again, I'll update when I know. I going to get some lunch now.

Just talked to Andrea

So it looks like she is in the "Awake" phase of the operation. The anesthesiologist called the front desk of the waiting area. He said she is doing great. They were able to map some of the motor functions.

The anesthesiologist then put Andrea on the phone. The conversation went like this.

Andrea: "Hello Mike?"

Me: "Hey. How are you?" (stupid question. stupid! stupid! stupid!)

A: "Horrible."

M: "Awwwwe."

A: "Don't you Awwwe me!"

M: "Awwwe."

A: "You're so stupid. I love you."

M: "I love you. Hang in there."

A: "You too. Bye."

I went back to the waiting area. I told the family it was the anesthesiologist and I got to talk to Andrea and that was it. Pope then said we thought the anesthesiologist was going to ask you how to shut her up. He's a funny guy.

10:30 am Update

We just met with the nurse monitoring the situation.

The incision started about 9:03 am. So, it's going to be a long day. All vital signs are good. We'll have more of an update around 12 ~ 12:30 pm.

Around 9:45, the nurse anesthesiologist came out and asked us to fix Andrea's glasses. When Andrea is in the "awake" phase of the operation, she needs to be able to identify pictures and visually see the anesthesiologist. However, without her glasses she cannot see anything. Yesterday, the assistant anesthesiologist requested that we remove the left leg of her glasses because they were likely to work on her left side of her head and the leg might get in the way. But now we needed to put it back on.

So I tried to the screw it back into her glasses but failed miserably. The screw was very, very small and it was hard to line it up. The screwdriver we had was not magnetized, so it made the whole process difficult. Andrea's father then tried, but he could do no better. So we gave the glasses to the nurse to let the surgeons, with the steady hands, do it.

We are all here for the long haul. Pope is working on his crossword puzzles, Leigh is playing with her iPod, Fran is keeping busy with her reading and Amy is out for a walk. I'm sitting here listening to the Tony Bennett station on Pandora. Tony, Frank, Ella and Nat seem to keep me calm and positive. And I'm planning to play Literati online with my friend Vanessa in Miami. So we are keeping busy.

-Mike

Surgery should have started by now

Mike here.

Andrea is now in the hands of the surgeon and his staff. She left about an hour ago. We should have an update around 10 ~ 10:30 am.

She was in good spirits when she left... But that may have been the drugs talking.

She met with the anesthesiologist and he explained the step by step process of the surgery. Right now she is sleeping while they remove part of the top part of her skull. They numb the area and then wake her up. Now, the surgeon already knows what parts he wants to remove. But they wake her up and ask her to provide feedback (eg. moving a leg, speaking) so the can optimize the removal. Then, after removing most, if not all, of Snarla, they will put her asleep, put the skull back in position and close up. Sounds too simple when I write it out.

Anyway. I'm sitting here in the waiting with Pope (Father), Fran (step-Mother) and Leigh (step-Sister). We're all just trying to keep busy. Not much for us to do, but wait.

Surgery morn

Like a child eagerly awaiting Christmas morning that has naughtily gotten up and run to the room where Santa goes, I am the parent in this situation. Here I sit Groggy and dreading the flurry of events to come yet on some level anxiously awaiting for the whole day to be over and for life to begin new and easy (ish).
Understandably I slept like crap. I woke up at 1205 and wanted to eat or drink something. I looked at the clock and thought "Drat!!! Foiled again!"

My douchie on behind my left ear is irritating me and the crown douchie is itching underneath bc it is still healing from the biopsy. I think Mike might try to tie my hands together for fear of me dedousching myself. My glasses are crooked and they only have one arm. Basically folks I am the person that you wouldn't want to run into in a dark alley right now. Not because I am scary but because if you did you would then by the good samaritan code be obligated to help me.

Peeps Mike loves me for the sense of humor and if you know me or you know of me you might ride with it too.

How do I feel? Really, no I mean REALLY, you actually went there? No no nonononononono No. Today is NOT about me!! Today is about the surgeons hands and the team together digging this bug out of my head. It will be all about me later.

On a giant side note I just want to let all of you know My sister Laura and I are locked in a battle for who will win the day. Someones thunder may be stolen. She is 3.5 incheas dialated and 80% effaced with my beautiful neiced Georgia. Wouldn't it be weird if we "Gave birth" at the same time. I think her baby MIGHT be cuter. Considering mine is dirty gooo. EWWWW That sounds gross.

OMG My husband just looked at me in the eye and said Quoting here, "Honey, when we walk into the hotel I am not going to tell you what to do." I looked at him and said, "What the hell kind of amenities do you expect? I get a cathater." I guess I can give him a break it is 420 am which is odd bc I see no grass here.

OMG he also just sai, "Go in peace." My reply, "first I am going to mock you because I am obviously frightened then I am going to be your wife and understand what you mean and not what you say."
I love him so much and we are both spinning our wheels because there is nothing left to do except literally put my life in Dr Langs very capable hands.

See you on the other side.



FREAK!!!!!!!!!!!!! I meant of the surgery...


Toodles!

Monday, November 23, 2009

Surgery Eve

This kind of sux. All day in hospital IV dude tried to kill me...just kidding. He put the iv in beside the vein and went into the vein sideways so when he let the needle out the friggin plastic BENT IN MY VEIN Ouchy YOWSA!!!!!!!
Mike and I having discusions of the fact that we realize that in 8 hours everything is going to change, perhaps for the not so great but we hope for the BEST. PLan for the worst Hope for the best. That is hell of a thing to mean when you go into brain surgery.
515am we have to be in the hospital (hope Dr.Lang is a morning person) My anesthetic doctor flew in from Pheaonix about 30 minutes ago. Met the COOLEST chick today. Hodgkins Lymph (SUX SUX SUX) but she is something else. Since 02 she had this and now she doesn't even think of it...hopefully I will be like that.

So I got these things stuck all opver my head today they are called feducials, I told the nurse that they shouldn't call them such a dirty word. I mean really, it souds like fallacio and dousche. WHO WANTS THAT ON THEIR HEAD????????????????? Who names these (sadistic freak).

So my head is full of flacid douchey stickers and Snarla has been targeted. Tomorrow they will engage and thus the battle of "Terra El Body o' wee Andrea" begins. Seriously name this battle cause that name ah SUX@!!

ICU bag is prepped and other bag is prepped as well

Everybody call mike tomorrow his number is 214 xxxxxxx hahaha got ya!!!! Don't call he may try to hurl his phone at an unsuspecting cancer patient and I have to tell you...that would be unfortunate.

Found my sisters don't read this so I guess I am now free to talk smack about any and all of them minus Leigh (you rock by the way) I hope she doesn't think I am sucking up just b/c she reads the blog...I guess I blew that out of the water. No worries it doesn't make sense to me either.

My husband is a neanderthal.

Amy told me my last words would be "oops".

OKAY that being said. I will commence with the bend over and kiss your ass goodbye stuff for about.......NM I'm done

I don't know what will happen and I am not particularly curious about the "other side" or the Dude that I saw in a hallucination or the guardian angel or guide or whatever. All I KNOW is the surgery will take 6-8 hours
1-1.5 hrs opening
2-4 hrs me awake
1-1.5 hrs closing.
They made me take an arm off my glasses so they can me pick and I will be able to see them. BOY OH BOY I am one HOT mama!!! I have douchies on my head and they are going to secure my glasses with electrical tape...yes on the nose piece, also he may shave the entire left side of my head. I think next Halloween will be fun I already have my costume..two face b/c I refuse to shave the other side of my head. I think I can make it work. We will see.

You all ROCK!!!!

Friday, November 20, 2009

after the surgery

I found this on a survivors site. I did not write it but will need to use it later I claim no rights to this particular piece of work
A message from my brain:
Hello,

I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.

As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.

I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.

How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?

Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.

What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.

I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.

I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.

I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.

Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.

Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.

http://www.waiting.com/letter.html

Buckle up folks, this might get scary

Hallucinate much?
So sick and nauseous started at 2 am this morning...so sick but couldn't throw up this continued until around 6 or 7 am when I hallucinated and it apparently made the nausea stop.
I was awake already begging to puke. I couldn't so I got back in bed and all of a sudden I was in a darker than normal library looking place there was a calm I have NEVER felt before as close a I can get to describing it is serene I felt someone take my hand it was a he but I couldn't see his face dressed darkly and he was pretty tall he seemed to be right in front of me but also far away. I noticed the oddest details, tall fairly thin, blond, I don't know anyone like that and it was just weird b/c the whole thing lasted maybe 15=30 seconds.

I walked in the library called for mike and then someone took my hand and said, It's starting." I asked, "what is starting?" He said, "Your death." I pulled my hand away and said ,"No." then I realized my eyes were open and I was looking at Mike he wasn't holding my hand and I felt calmer than ever have before and my nausea was 100% gone.

I tried to find it again but couldn't. I have to assume it was a hallucination.
How whacked is that? It wasn't scary AT ALL it was the total opposite of scary it was very calming which it what makes it weird.

Thursday, November 19, 2009

Pills, headaches, POSITIVITY!!!!!!!!!!!!!!!

Alls cools in brain tumor land...
Today I woke up in Houston and going to sleep in Dallas. Going to see Blind Side tomorrow, New Moon Saturday, Anxiously awaiting Avatar. OMG HOW FLIPPIN COOL DOES AVATAR LOOK!!!!!!!!!
Had cog testing and another fmri today. Doc said I scored so well on the cog testing there would be no way to tell there is anything wrong with me (Minus the scans with the grapefruit in my brain) Then the fmri cam and he said I scored "off the charts" 9 with the motor function tasks. I scored 5 ish with speech. Over all positive.
Converted the back of Felicity(my ford fusion) into a pseudo pallet thing I was VERY comfy I watched Caprica AWESOMENESS and most of Battlestar Galactica "The Plan" alo awesome.

Been assured they will NOT show me my brain...for the best that would screw ANYONE up. But I might be able to see it on a scan.
Problem much? Our bedroom and everything is Up STAIRS so we will adjust.
Right now I am flat out exhausted, it is obvious b/c there is no or at least VERY little obnoxiousness in this blog.
To the lady I met today in the mri dept. I cannot find your email drop me a comment b/c I have to approve to publish.

I will blog more interesting tomorrow.
Let me know you are out there!!!!!!!!!!!!

Wednesday, November 18, 2009

getting philisophical???

Okay ypu may not like or be able to read through LONG blogs but suck it up for this one peeps. Cancer is like looking death in the eye beating cancer cancer islike poking death in the eye and walking away.

That being said
When you stare down the barrel of a loaded gun (happened when gas station was robbed and I was alone about 8 years ago) makes you want to pee your pants hit the deck and beg for mercy. I just hit the deck and did one of the prior actions...what I was 18 and being robbed..AT GUNPOINT.
Anyway I have to get this out:
I have always believed in this but never so strongly as right now. It is not that I believe in God or Buddha or Gods but I do believe in FAITH. I believe that every single life here has a purpose and when you fulifill your purpose you die. Even babues that die fulfill their purpose of eliciting feeling from the mother or father or doctor or purposes may not be figured out ....ever but they are there. Everyone that I can think that has died has served a purpose none of us are here to be wasted EVER. Your purpose may be as simple as giving someone else a smile or talking to someone and delaying them so they don't get hit by a bus or omething like that.

I know most of you have checked out of this blog by thi point but for those of you that are still here I want to tell you FAITH FAITH FAITH in god, yourself, your huband, others prayers, jut faith and pure belief can change your life and others.
I really think the whole world is one big ticking mechanical machine or mechanism, in my belief the number of souls or whatever we and all life is is finite. When one dies another is born to change the world in some other way maybe to drive the faith of other people. Maybe to be the ONE case that can save the lives of many others. To sacrifice yourself to avoid pain is not good to sacrifice yourself to save millions very honorable, to live your life as hard as you can and tell everyone about it so they can try the same thing...amazing life changing world bending. You may think I am off my rocker or on happy juice thats fine (I'm not by the way).

One last thing
Fear is good it lets you know you are human and you want to live; once you no longer fear you have succumbed, I don't care what Kubler Ross' says (she was awesome and genius btw). Fear is good keep it but DON'T let it control you. So Stare down the barrel of that loaded gun and pee yourself if you must then think about how others can benefit from YOUR experience. Don't be skimpy TELL people about it. they may not immediately care but one day they may realize you served a purpose for them.

snarla i'ma gonna let him cut on you!!!!

Here is the deal briefly,
Tumor: size of a grapefruit in my frontal left lobe. Doc is going to have to do surgery while I am awake...(wicked scary, but a great opportunity for me to see my attacker) I will apparently come face to mirror to surgeon with Snarla and then he will try to weezle her out while doing the least amount of damage to me. He sounds certain that I will come out of this with some serious possibly permanent deficit. I told him Mike would choose speech Yes people I could be mute. Don't get your hope up I could still type. However, I could also be paralyzed on the right side as well as mute...again I will hunt and peck my way into your lives all over again and babies learn to talk all the time I'll just learn from babies.

I have greatt attitude scared over the top but told the doc I am not ready to die yet b/c I haven't pissed enough people off. Apparently I am attempting to fill my lifes word quota in 5 days. Thats tough. Maybe I already hit my word quota and god is firmly saying shush. check the blog bc writing will hurt and I appreciate the thoughts and well wishes and prayers and all other god feeling things Thank you all so much.
This is not good night and good luck this is "I'M COMING FOR YOU SNARLA YOU BITCH!!!!!!!!!!" how dare she mess with me!!
love AJG

i dream of dead people?????????WEIRD

ye it i 5 am. but I jut woke up and HAD to say this. I just woke from this dream. I drove me car to my old neighborhood and dropped by Aunt Alices' house I went in and Valarie Spratlin "Sprat cat" was there. Then I went to Bobanne and Johns house and it was immaculate like it used to be when grandmamma lived there I walked in and Allison was there playing with a cat. then I thought my car had been towed so I got in a van with Jim and he started to drive me to help me find my car. then I looked back and saw my car and said you know what I can walk back from here you guys go on I can see my car. They were like okay though no one said anything. walking back I had to climb over all sorts of object jut crazy crap in the road like big stuff too like tables and couches and stuff I was scared to fall off of. Then I saw some lady taking the stuff like it was free I looked at her and said hey this i MY FAMILIES STUFF and just so you know EVERY SINGLE one of these people died tragically. she dropped the stuff and ran away

The weird ass part about this: EVERY SINGLE PERSON I SAW IN THIS DREAM IO DEAD. My point: not quite sure but I managed to climb over all of those weird road blocks and get back to my life and chase off scavengers. Someone PLEASE comment b/c that was the weirdest dream ummmmmmmmmmm ever?

Analysis:
Lady taking stuff is my tumor she will run away
all the people saying I am welcome with them but it is not my time
the roadblocks mean it is going to be tuff to fight with snarla but I will win

Thank you Connie with the insight.

Monday, November 16, 2009

Crappy doodle Dandy hope hes handy with a scalpel

Well found out today that Snarla has grown 50% in a month (little witch) and we need surgery ASAP!!! Going to MD ANderson for appt Wednesday at 815. Doc says it won't affect motor function but she cannot promise about speech (Yay for Mike!!!!) or for pple who don't like chatty chatty....screw it I need to be able to talk but I know I can relearn it. This will be the second time I will have to do this. ARGH but maybe they will give me some snarla to keep.


won't be blogging if/when I have surgery Thursd/Friday but very soon. I'm scared and guys what folks, I'm pretty sure that is NORMAL.

transformers2 and trampolines

Yes yesterday bbbbbaaaaddd day wait the entire weekend starting Friday was bbbbaaaddd. But today I am determined to have a good day. I finally found the entire farscape series...withe peacekeeper wars AND Tranformers 2 on Blu Ray LOh come senseless unrealistic violence and people too pretty to bother being put in war zones when they should be in ads and giant huge mechanical grrrrrr...does it get any better. Not tol mention the picture (better than movies) and surround sound AND the ability to pause and go wherever whenevr I want.
hmmmmph. screw you wittle snarla we ARE gonna get you and you can mess with my emotions as much as your little black dividing cells want to but You wil NOT take me.



Told you: up and down.

Watching T2 funny hilarious. I have been told 2012 SUXXXX but I think that with my whacked out sense o humort and/or entertainment likes I may love it. Bumblebee ROX. hahaha nope it is in no way valuable worthiness movies but i do love the senseless violence no one should knock these movies. dont like it...dont watch.

Sunday, November 15, 2009

You Better Get Ready

I am not suger coating anything. I am writing on my good days and on my bad days.
Don't you dare try to step in and give me ANY sort of advice if you have not been HERE before.
I was given steroids in the hospital. I am apathetic about everything. I am sick of advice. When my husband raised a bottle in happines to show me hawaain coffe I freaked out backed up started crying and was GENUINly afraid of him. FOR NO REASON AT ALL NO REASON I was scared of the one person I trust more than anyone else in the WORLD and I was SCARED of him and I don't know why.
If you haven't been here you better hope you never get here and if you do get here and you are a weak person, you may as well bend over and kiss your ass goodbye, that and your sanity. I am acting erratically real and not real are not that clear my family thinks Im faking or thinks it is stress and they are in denial, everyone except my parents and maybe Leigh but I shake and cry all day today.
FOR THOSE OF YOU TRHAT SAY TAKE THIS BLOG DOWN I give you the big fat finger because there is no other blog like this out there. Brain tumor people need to know what they are or could be in for emotionally, physically, medically, for gods or whjatevers sake dont just tell us your flippin good times.
THIS is how it is it is like tony Romo (cowboys)
When you have a good day, you have a really good day, when you have a bad day you have a really bad fricking day period no inbetween.

go ahead and hate me

So I am realizing that I am mean and hateful to everyone that I know. I am not meaning to but I can't stop. My brain-mouth filter is flippin gone. I feel emotionally fuckered sense of humor is leaving and taking what feels like my humanity with it. Right now I HATE the "tester" It is not tests it is viscious who does this and why in the heck would someone say thank you for testing me to let me prove my strength. Guess what dude if I haven't proved my "strength" to you yet then screw you. I am done: fix it or forget it. I'll fight because I want to see Eclipse and Breaking Dawn my belief in "god" will fade in and out.


To the people:
IF you have some holyier than though preachy HOLD YOUR HEAD UP speech STOW IT. I DON'T want to hear it. If you bring it out I will tell you off and then I will feel bad about it so just don't do it!!!!
Support is all I need Support and no preachy ness Your preachy makes you feel better but makes me angry.
crack jokes, be fun, be funny, but don't try to shove "god" or whatever you believe in down my throat. It seems that cancer is what people think of as "This is my best shot to reach a lost soul" SHOVE IT. I would appreciate it under normal circumstances these are not normal circumstances. you must understand that and you must roll with the punches, that is what I am having to do, you should roll with punches as well.

Oh yeah guess what!!! I ALREADY HAVE A BELIEF SYSTEM DON'T SCREW WITH ME!!!! Sorry bout that. Like I said, I am mean.

Saturday, November 14, 2009

brain sutures

I pulled the stitches out of my head....oops. Seriously who pulls stitches out from a frickin BRAIN BIOPSY. OOPS
Its always Sunny in Phiadelphia is retarded.

deep thought

This is hard and only another person with cancer can fully understand. We should form a club. Maybe we have and I dont know it. I am drinking more water than I ever have before.
Vampire Diaires is a little creepy.
So my hospital bag is perpetually ready with
1)dvd player
2)comfortable blanket
3)snuggles my bear
4)socks
5) comfy comfy clothes


I need fluffy comfy super fluffed sox b/c Indie ate mine.
comfy smallish bed for Michael (bc he NEVER leaves my side)

Seriously Mike NEVER leaves my side unless Amy or Alicia or Fran FORCE him to go get something to eat.

I think this christmas may be hard though.

STEP UP OR GET OUT!!!!!!!!!1

Alright that is ENOUGH!!!!!!!!!!!!!!!!!!!!!!!!!1 Michael NEEDS/must have/deserves/requires a frickin break and he REFUSES to do it and in the process is getting nasty and nastier to me. Can I help it if the sztupid flippin doc gaqve us wrong directions and now I am in a constant state of drunken uncoordintation todat I cannt walk talk or otherwise. SOMEONE STEP UP TO THE PLATE AND FORCE MIKE OUT FOR A FE MINUTES.

You just watch he nver reads my blog but he will read this one and then get mad. he thinks he doesnt do enough without realizing that he does WAY WAY BEYOND AND ABOVE TOO DAMN MUCH. One person should never have to carry the biurden he is carrying and he to goddamn proud to ask for help so SOMEOME STEP THE HELL UP!!!!!!!!!!!!!!!!!

The Day after yesterday/Poll should I yank it out?

Okay I made a promise to myself that I would blog EVERY day (unless in hospital and cant get to inter net.
Started the Keppra along with the dilantin today. Man peep I tell you I feel like the clients I used to have but I have 2 pill boxes each with 4 pills in it. One for the morning and 1 for the evening.

Yeah yeah all the "symptoms" yesterday were seazies and yes I went to Baylor and yes they pumped me full of drugs. Just steroids, not what some of you would think as the "good
kind. The doc offered me those but I adamantly refused.
Anyway last night I had good dreams; any day I don't mention dreams means I had nightmares of slept like crap.
There is a string thing soming out of the biopsy site. That is what I am polling for. SHould I yank it out? I probably shouldn't bc something important may be screwed up.

BTW for people reading this that think I am retarded; you have to KNOW me to get my sense of humor.

ANyway I am going to take my drunky drunkark butt downstairs now. Oh one more thing the nurse said "No alcohol PERIOD!!!!!!!!!!!!!!!" which really sux bc tis the drinking season whimper whimper...

Friday, November 13, 2009

seiz

yup they were seizies. ok didnt mean to write that but good short cut. cant really write now

not much sense

little bitty compared to what is coming and the 10 pain for the seizures but my head hurts like i am hungover and drank NOTHING. This sux I at least want the pleasure of consuming it if i am going to wind up with the consequences. The weather is changing so my lips crack and hurt while I sleep. Remember Carmex is your friend dont tell me it is addictive I have bigger things to worry about.
I am so stress and anxious I cant think straight. I love you guys for gtelling me to calm down but i cant.
Here is how to do it: Tell me "sit down concentrate on the breath in and out of your nose and then give me a few minutes" Depending on How wound up I am it may take longer. I am talking wound up like yesterday bc if you do that and I am only slighlty wound up or i am normal and you don't know it ill be not happy. i have to go my head is demanding something and it is hurting me.

Thursday, November 12, 2009

aaaaaaaaaaaarrrrrrrrrrrrrrrrrrggggggggghhhhhhhhhh

Basically had a breakdown today. Brain Cancer, Dr Lang, Dr Fink, Dr wood, Jean, Candy, Carol, Dr. Markert.
I would like to exit stage right please. Snarla SUX and she hurts, my head aches and pounds and I have super sharp pains and I am to impulsive enough to send out emails thinking they will be helpful and everyone bickers with each other. I know they are all there for me. But I must tell you Leigh made me feel the best today. Tried to tell her but phone won't let me write much. It is a person not people that make me better. Individuals are awesome but groups make me anxious.

On the not crying in my (whatever my drink is) side. dammit my head HHHHHHUUUURRRRRTTTTTTTSSSSSS. mY ARM HUIRTS i want the pain to go away i want the surgery i want the roller coaster of emotions to STOP it simply hurts and I REFUSE to keep it in anymore

hury up hurry up HURRY UP Andrea...Okay now wait

Today I have called every doctor I have and their brother.
Markert says it (Snarla) is on the motor support center and they can and want to (meaning they need to) get it out. I wonder if they will let me keep a little peice of her. Just so can look each day and see what I am fighting. Called another doc and they sched for dec 3rd then I realized I would be out of seizure meds by nov 23 so I called back and she wants to see me; wow moving up in the world....wait I don't think that is good when your neuro-oncologist requests to see you right after testing...

Anyway, I get sharp pains in my head that take me to the floor yesterday after the plane ride my right side completely rebelled and made me NEED the wheel chair. I theatened that I was going to rip my hand of and the rest of my right side with it. It knew I was bluffing and continued to rebel. The doc yesterday said he wanted a blood lvl test because it sound like I am have teeny tiny focal seizures. Memory is mostly shot though that very well could be the MASSIVE anxiety and stress of this so I am not worried about it. I am worried about the SHARP STABBY pains in my head though. Alright peeps, here we go, or more appropriately her I go with you watching. BTW I used to be a REALLY good speller but now I suck and all the $5-$10 words I knew said screw you and walked out.
Its gonna be a good day tater..

Wednesday, November 11, 2009

getting tiny seizures, that in stinky

went to Bama. they say they can get it out but I may have temporary disablement. I.E. loss of some speech, loss of total speech, legs, arms, weakness to return 3 weeks to 3 months. SUX but he says only way to get best treatment surgwery radiation chemo. The plane or being stressed or something like that caused my whole right side to poop out. this really sux.
Thus the battle for my body begins. Who will win Andrea Vs. Snarla?
I do have to reming myself constantly "Thank God it is me and not some 30 something single mom with 3 kids to support. Thank you God for trusting me with this"
Oh yeah, I am having tiny focal seizures which means the seizure meds need to be adjusted.
to be continued...

Tuesday, November 10, 2009

Um... table for weird???

So this should be in the epiphany blog but it didn't make it. See brain cancer SUX b/c I had the thought and now its gone.
Wait; purpose of life: In my life I believe that everything that has happened has happened so I can fight and beat Snarla. I have been in boot camp my whole life I just didn't know it, Now I am prepped and almost ready for battle.
Are you in my corner??

Just came back from walking the dogs and I feel kind of weird. Like more off balance than I have been thusfar, and earlier My head really hurt I mean hurt so badly I yelped and put my hands on it but as fast as it came it was totally gone.
Weird right? No worries people I will tell Dad tnt and DR Markert 2moro.

Deuling Bajos? God I hope not./Is any body reading these????

So I am leaving for my second opinion at UAB today. So I know this was done in my dear sweet home state of Jawwwja (Georgia in southern drawl script) but if I am going to Alabama why oh why do I have the theme from Deliverance running through my head?
!!!!!!!!!!!!Zombieland!!!!!!! Tallahassee opens the door and plucks a few string to deuling banjos and the UBER FAT zombie come barreling out , go figure they were in a grocery store...Guys rule #1 CARDIO!!!!!!

Bryan said he liked the 1 or 2 paragraph blogs and to be honest I do too, you prolly do too unless you just scanned this, then miss out on all the cancerrific comedy fun.
Not that I am taking a reader poll but let me know whats up guys, I spend my days trapped in the house b/c I cannot drive. Everyone told me "Get a hobby" so my hobby became inflicting my blog upon the world tehehe. AT least I make it entertaining (I think)

What does it mean to "fight for your life?"

So I spoke to my friend Bryan last night and was telling him bhow I have spent the last month coming to grips with the fact that I have this potentially fatal disease I mean all aspects of it like death. Man it took a long time for me to get over the hurdle of seriously accepting the fact that I may croak pretty soon. Took me all month.
He told me it is like a soldier at war, if you are going to jump out of that ditch thing and rush the enemy you must be ready for ANYTHING. Wounded, disfigured, disabled...anything.
I am going into the fight of my life. Thats me and the cancer tTO THE DEATH!!!! Okay that sounded alot better in my head but I am going to leave it there. Where was I, oh yeah fighting: I have become as accepting as a 28 year old can be about ones own demise but I am still not okay with being disabled. I mean look people: talking is obviously my lifeline. I am going to have to go into this being ok with only 3/4 of the options. But I have to accept all the options, that way I won't forget even for a second what I am fighting for and who I fighting against.

Comming to get ya Snarla (evil bitch)

following the advice

My aunt told me to write a book so this is going to be fact and fiction interspersed but most of all it will simply be venting and I don't care who reads it.

So the last time I went to church it was the first time since 2003 and it felt like I had come home. Well, this time I went there and the sermon was actually ABOUT coming home. After the sermon I showed the reverend the quote from "Living with "Terminal" Cancer" written by Dr. Ben Williams, " (Richard Herrnstein) While dying of cancer, "He said that he saw no more reason to mourn the inevitable end of existence than to mourn the fact that none of us existed prior to birth" Reverend Aaron agrees with me that the qoute is incredible profound. While Mike went to go get the car I sat on a bench outside and in true "Andrea fashion" I stopped an elderly couple and asked them how old they are. Now for me to actually get away with asking people their ages I have to tell them about the cancer after that they are generally pretty pliable. I mean really who I going to tell? Anyway after I find out their ages and tell them why I am asking I follow up with "do you ever regret your birthdays?" Across the board the answer has been No but I think they are telling me this because they feel sorry for me which is totally not what I want. I believe that such a young person having such a nasty disease may possibly change their lives even for a day.

We went to Cafe De France (AWESOME!!!!!!!!!) and at the end of the meal we wound up inviting an elderly lady and her son to sit with us so they wouldn"t have to stand. (Okay this was my idea and M ike had no time to protest) Anyway they sat down and we proceeded to engage in small talk once Mike and Eric were well into their conversation I looked at Caroline and simply wondered......then I asked. She said she was 76 and I asked her does she ever regret her birthdays and she said "Heavens NO girl, why do you ask" I shifted in my seat before I took a breath and told her beacause I knew this would alter the current course of conversation. You know, brain cancer is just NOT one of those thing you can downplay. We left after that and I felt uplifted not because I had embarrassed Michael (sorry honey) but simply because Carolines answer was so genuine.

I have taken to not letting the little things go by or get to me. My aunt is all up in my business b/c her son has survived this (totally different though b/c his was on the RIGHT side) Anyway he has survived this and I am quickly learning that he cannot be a therapist b/c he will tell his mom and she will tell....anybody that will listen. I guess she and are alike in that way. So she got in my busines and I got REALLY steamed until Mike looked at me and said tone serious, "Really? You're going to let this piss you off? Really? Bigger picture Andrea. This small, minute, tiny, worry about the big things." That snapped me out of it and I realized yet again exactly how lucky I truly am to have such a WONDERFUL SUPPORTIVE CARING (I could go on but you would get tired of it) husband.

I am trying to force everyone in my life to live their lives NOW. STOP, "Regretting yesterday, worrying about tomorrow, and missing today" (Paul Fielding)

Watching Eastwick,Rebecca Romjin SUX!! Mike is at the Opera with Veena.
Interwoven with thoughts of cancer, I am gradually (for the moment) coming out of the "Holy Shit I might Die" fog. I am excited to go see The Blind Side and New Moon. I am beginning to really not like shows like Criminal Minds, Law and order SVU. But I do like Eastwick, Desperate Housewives, and for sure Glee. Having Chicken Ravioli for dinner.

Monday, November 9, 2009

Poker and Buddhism a match??

So I did go to the Buddhist temple and though you people may think I am whacked out apparently I have been Buddhist my whole life or at least in a previous life.
When Bryan (chauffeur for the evening) came to get me for poker he said I hands down the calmest he had EVER seen me. That includes pre Snarla (finally named it).
Anyway so we went to poker where I realized there is a very fine line between carpe diem and carpe' dumb ass. It was alot of fun and Bryan busted out pre me so I figured I would play crazy loose.
I used to think a person I used to know was a twit bc they claim Buddhism as their religion, however they really are not (a twit that is). I don't claim anything b/c life is too short to stick so tightly to only one belief when you have not even explored others. I have a mash up of all the religions I have experienced, I mean they make sense and they all agree on one thing...

Epiphany

You know if you think about it cancer is kind of like the "iron man" contest of wills/spirits/personal existence. The survivors are like the ones that can lift trees and cars and crap but not by brute force.
learning how to separate your spiritual self/energy from your physical existence is going to come in handy REALLY SOON. When the slash/torture/poison part of this begins I don't actually have to be there. Not looking for dramatics but when things are really painful it would be very helpful just to scoot over a little bit and I protect my being. When the pain is over come back simple as that. The Buddhist monks can actually do this. Major props guys.
Very helpful for alot of experiences to bring one from high strung unit of 25 (on a 1-10 scale)down to a 2 in daily life like when boss screaming or car accident or really anything uncomfortable allows one to be able to respond logically instead of complete panic. I will survive there is no other option.


BTW I figured out why this happened in sequence.
1) I have never been the shut up and listen kind of girl and that is critical to life skills
2) I have always always FREAKED (I mean hit the damn roof) over MINOR things. People who know me can attest to this. With me it is ALWAYS something, right guys?
3) I have never really had the do it now kind of attitude(seize the day) (there are things that I have wanted to do for a while and haven't done it
4) Mike and I started dating and it has been one trial after another, I mean I really put action in his life, it just follows me bc I freak about everything.
5)I graduated and got a job with the Depart of Aged and Disabled (I might wind up disabled)
6) I made myself seize b/c of my high strung attitude.
7) We live right next door to what we think is a Buddhist temple.

I am going to carpe diem and go over there and have someone start teaching me meditation. I have started writing which is something I have always wanted to do but have never taken the actual time for.

Time to start preparing for battle and smell them roses peeps. As the title says This bitch is OURS!!!


15 minutes later:
Well that didn't go so well, I opened the door and the alarm went off and a very nice but forceful said, "Intruder Intruder Intruder You have violated a space that is portected by xxx security systems please leave NOW."
Is that a sign?

Burning Questions

Questions I have: (please comment if you have questions)

How aggressive is this (in terms of time, growth)?
How does it progress i.e. will it turn into a GBM?
How can I tell if it is growing?
How long does surgery take if it is a viable option?
What does less aggressive than a 4 and more aggressive than a 2 mean exactly?
Quality of life?
How will I feel on treatment?
Where can I find a support group?
AntiSense treatment?
POLY ICLC immunological agent?
Been feeling "odd" like super tired and ants crawling only on my right elbow what is that?

Planning and cleaning

I hate the fact that I can't drive. It makes me worry about my job. However, there is really nothing I can do about it now. I was diagnosed and then everything went to hades. I have already used all of my leave and sister is working on DI which makes me sad that I have to take that but if I did go back to work I would be for absolute crap due to the fact that I am off ADHD meds. But in the meantime I am getting my body ready for treatment be it surgery or chemo or radiation. I have always been tiny but at this time it is critical that I gain weight quickly but in a correct manner. My trainer says PROTEIN PROTEIN PROTEIN!!!!! (literally)
Whatever is ahead of me I will face it when it shows up. For now I have to take it day by day and keep on figuring out ways to get my life back to as normal as possible so I can lower my stress level. I am fairly stubborn so I want to figure it out on my own, blogging is one way to do it, making cds for my sisters is definitely another.
Today I have everything scheduled out. I need to force myself to follow it. Uh Oh I am late to go fold laundry...OH JOY!!!!!!

Sunday, November 8, 2009

Cowboys and alphabet

So we are sitting here watching the cowboys game and I am attempting a crossword puzzle. I kid you not friends I frickin forgot what comes after the letter T. Mike sang the alphabet song for me then let me finish it on my own. I finished the crossword and moved on to my blog. I need to exercise my mind. Seriously I forgot and thank God for Mike.

Oh yeah Cowboys are up 20/13 against the Phillies with 7:33 left in the fourth.

bad dream bad dreams go away good dream good dreams here to stay. (that is stolen from Greys but I didn't do it 3 times...)

Nov 8 2009
For the first time last night I wasn't racked with nightmares. I have been looking for books on hom to handle this situation and there really are not any out there on how other people feel when they are going through brain cancer. Oh yeah, it was upgraded to an anaplastic astrocytoma or a grade III. Yep I am scare as all insane hell. The anxiety is the worst because it just makes everything bad. Dr Fink has me on 300 mg of dilantin per night so I won't have seizures and she built me up on welbutrin for depression and anxiety...started at 150 mg and then went to 300. I have never been on such a high dose before. Hoever, my anxiety is SO BAD that I don't feel any different.
I have been reading "Surviving "Terminal" Cancer" by Ben williams, he was diagnosed with a GBM on his right side in 1995 and he is still alive. What seriously sucks is that I really cannot find any survivors of this out there, they must exist, I just cannot find them. Left Frontal Lobe anaplastic astrocytoma Yipes stripes. Also neurologically for the moment I am not really having a whole lot of difficulty, I mean at times I stutter and other times I cannot remember my words but anxiety explains the memory thing. I have notice that I am dragging my feet a bit.

The most pr found thing I have read was in Ben Williams book. He quoted Woody Allen and said "I don't fear death, I just don't want to be there when it happens" You know if you die slowly you really won't be there when it happens. I also read (same book) I don't regret my death as I did not regret before I was born. Not an exact quote but pretty darn close. However, I am right there with Dr. Williams I also will not go quietly in that good night.

I have wondered if this is God or the higher powers way of telling me to shut up???

I am more than scared I am past anxious I wake up terrified. I go through my day with the words "anaplastic, Grade III, Terminal cancer, Left side left si left side frontal lobe speech center motor center..." ALWAYS rolling through my head. I sleep fitfully because I am scared of having a tonic clonic seizure, I know Dr. fink says they are well controlled with medicine but I twitch more than I used to and I feel like I would be having a seizure except for the meds, I feel like seizures and meds are in a giant twirling fight like Adria and (see can't rember name) the ancient that was Daniels friend.....ALma and ADria locked in eternal battle from SG-1 (watch out!!! SCI FI reference) that is how I feel my brain and meds are. I am so sick of people telling me to "hang in there" I know they mean well but just send a card every now and again to remind me so I will have physical permanent reminder that people don't want me to give up or give in. I am fucking terrified but other than that I feel okay.

What nightmares may come is that a copyright infringement?

Last night I had a dream that I was in a car speeding around really curvy roads. My dad was in the front but then they turned into police men. We seemed to be careening out of control and all I had was remote control to try to enhance the brake. We were headed toward a stop sign with a beamer already at it, I pressed the "brake" as hard as could and realized that yes I did have my seatbelt on. We stopped just short of smashing into the beamer. Then I took the wheel and promptly got lost so I turned arounxd and went to find my dad.
I think this means that I feel I have NO control over what is happening to me and and even so I cannot contemplate dying. I cannot contemplate smashing into that car at that speed. I need to slow down and stop. This is NOT hurry up and wait, this is learning to be patient and trusting that everything will be okay. Learning to trust others as well and letting go of the motto "If you want something done right you have to do it yourself" Also accept the fact that not everybody can handle this. Most people will run the other way while yelling apologies at you. When you survive, YOU have to be the one to NOT let them back in your life. When the going gets tough..the weak run away but you as a cancer patient don't have that luxury.

Neuro this neuro that neuro WHAT!!!!!!

Everyone is telling me I am tough, I am strong, why don't I feel it? Why do I feel like a weak willed little girl hiding behind her mothers coat from the world?
The truth is: It may NOT be okay. I want to scream it from the roof for all to hear. it my not be okay. Left frontal lobe tumors do NOT always turn out okay. As a matter of fact left frontal lobe tumors are rare b/c so few survive to tell the tale. I may wind up disabled and drooling. I would trade our wedding day ten times over for this stupid thing to be on the RIGHT side of my brain. At least then though I would have forgotten EVERYTHING I would have the physical ability to make new memories.

10-03-2009
Everyone has advice, sometimes it is good and sometimes it is not so good. But they always think they are helping and they always need to get it out. You as the patient may not need it or even listen but they will. They will listen to you; you should listen to them.

5 years with no treatment, 10 years with chemo and radiation, 10-15 years with surgery, or 1 month should the surgery go wrong. Come on you are all thinking it.. Now let me tell you something"Be mad, Be serious, now lets kick this bitches ass" Danny and Mary Manasse.

We don't need empathy or sympathy we need support we just need support to help us stay positive b/c this is HARD!!! We can do it, we CAN get through this but we need support. This is the hardest thing we have ever done and alot of us do not make it out alive, some of us do and we have to live with time bombs in us for the rest of our lives.

I cannot tell you how to do this, you must figure this out on your own because like every tumor and every cancer and every patient we are all different. People turn to faith, laughter, fun, writing, reading or they just give up and they die sooner. Problem is: we are all going to die some of us just know what is more than likely going to take us out. I personally have started pilates and personal training and eating right . I have changed my life and since it is so new I cannot feel a difference. I will report later.

BTW: the neuro oncologist saw us yesterday. she prescribed welbutrin sr and an FMRI to find out where my motor cortex is so they can decide on surgery.

Also life gets busier when you have cancer.

seizures

October 21:
Andrea suffered seizures. She would first stutter the "g" sound (like a broken CD player) and then the right part of her mouth would twitch aggressively. A friend was here during the first seizure. An ambulance was called and I was called as well. She suffered at leat 5 seizures (Alicia counted 8, but I'm not sure about that). She was later taken an Emergency Room where she stayed overnight (I stayed with her as well). She was let go in time to go visit Dr. Barnett. We don't know what really caused the seizure, whether there was enough swelling generated after the biopsy or stress (she has been experiencing a lot of it lately) or the tumor itself (the CT scans only confirmed there was no internal bleeding). Regardless, Dr. Barnett prescribed some anti-convulsive medication for the seizures (Phenytoin EX 100 mg: 3 capsules by mouth every night) and Diazepam for the stress. In the short term, we are stopping her from taking any ADHD medication during this time.



If you have any questions, please call me or email. We wont know much more until after her appointment with Dr. Fink.

Mike

After this we wound up calling Charlie (MIkes Brother) and he very patiently answered my questions and told me it was more than likely a focal seizure and would not happen again on the meds. This calmed me down considerably.
just a plug for Charlie Garramone here google Dr Charlie Garramone.

This is where I lie to people
Connie,
It is not that bad, I can live for years with this, as long as I don't stress myself to death. On the flip side, I found out my worst fear: being a prisoner inside my own body unable to communicate but able to understand. Inside looking out. Good God it was frightening. I cannot drive for 6 months. I am SO scared to wind up mentally disabled. To be THAT girl who people ooh and what a shame at but secretly in the back of their minds thank god it was not me.

This is where my Dad jumps in

I really need to see my baby girl! I almost came this weekend but the sisters thought you needed rest and that my presence would be more helpful at your consultation with Dr. Fink Monday November 2. The appointment is at 8:15 but her office says you need to be there at least by 8:00. She has an hour and a half blocked out for you. I have spoken to Michael this morning and invited myself to stay with you. He was most gracious in response. I am planning to come in on Saturday and leave Monday afternoon. Fran is going to see her mother in Indiana who has been sick on Friday. We hope she will be able to come to Dallas on Sunday and leave with me on Monday.
I have contacted Dr. James M. Markert' office at UAB. He is the neurosurgeon who has been recommended for the second opinion. I spoke to Ms. Jean Robinson there who was most helpful. I gave her your demographics including both of your cell numbers. You need to contact her with your insurance information (i.e. company name, policy and group numbers). You can contact her directly at 5 or E-mail at Also you need to contact Dr. David Barnett's office and have them fax your records (i.e. history and physical, operative report, pathology report, both MRI reports - the initial one and the one done when you went in Wednesday with the seizures - also the chest MRI report) to , attn: Jean. He sees patients Monday AM and all day Wednesday. He is out of town until Wednesday of this week. She said that normally you will be seen within a week of receipt of all of this information. Potentially that could be Wednesday the fourth of November. You could fly into Birmingham where we would meet you and go with you to the appointment, of course Michael is welcome but doesn't have to come. Alicia said she had a ticket you could use on Southwestern. I think we are best served by getting all this done ASAP so the optimal treatment can be achieved. So - have at it as Fran would say.
I will E-mail our itinerary to Dallas when confirmed with cc to the sisters but I wanted this to be just to you and Michael. Suggest you print this letter and use it as a check list.
Hope you're feeling better after getting a good rest. Much love, Dad and Fran.

These are my doctors
Dr, that referred me to Barnett: Made the best in TX list
http://www.neurologydallas...com/cv_gerhardt.shtml

My Dr that did the biopsy: Head of Neurosurgery
http://www.txneurosurgery.com/..doctors-barnett.html

My 2nd opinion: Director of Oncology
http://main.uab.edu/Sites/..neurosurgery/faculty/41125/


Dr. Karen Fink
http://www.neuro-..oncologyassociates.com/..Physician.aspx?33811

Initial digestion

On Tue, Oct 20, 2009 at 9:52 PM, > wrote:
Hey Dad,

My emails may be staggered. I have to get to work by 7am and I sometimes work until 7pm. And by the time I get home, I have walk the dogs (Andrea cannot walk them as far as needed) and work out. So my time is being gobbled up.

Andrea is too apologetic about the situation. I keep telling her that this is what "For better, For worse. In sickness and health" means. When I committed to her, I committed to her. But she is still apologetic. It kind of bugs me that she seems to get tired easy. I think the pain is still bugging her.

She was able to spend time with Veena today. It was good because she was able to get some time out of the house. She went to Starbucks and got a flu shot at Tom Thumb.

I told Andrea to send you some emails. She said she would.

Anyway, we'll find out on Thursday what the biopsy results show.

I'll email later.

Not even going to mess around Connie, your words give me more comfort than you can possibly fathom. I am scared beyond all comprehension and I have no choice but to put one foot in front of the other. This time I really am staring down the barrel of a loaded gun. This is what Ted Kennedy had and it is rare to find these this early. The reason they cannot operate is because it can be compared to candlwax on a gear shaft. My brain has been invaded. On the flip side Ted Kennedy lived to the ripe old age of 70 something right???

Yeah, I am scared shitless

Remember – you can do it, you can do it, you can do it, you can do it, you can do it, you can do it, you can do it, you can do it, you can do it, you can do it, you can do it, you can do it, you can do it, you can do it, you can do it, you can do it, you can do it ………………………………………………….. You’re very tough and YOU CAN DO IT. Don’t give up.

Here are the results. It seems to be an a grade 2 astrocytoma. Right now, the doctor is not recommending surgery. The reason for this is the placement of the tumor, right next to the part of the brain controlling motor functions, which make it very risky for her to lose some functions. We have made an appointment with Dr. Karen Fink on November 2nd. She will look at Andrea's case and determine what type of treatment will be necessary. After talking to Dr. David Barnett, he seems to indicate, by way of his speech and not by actual endorsement, that chemotherapy will be required. But radiation treatment is still on the table we are not sure at this point.

Oy Vay!!!

I used to be very good at spelling and still am but the keys get hit in a wrong manner Sorry folks.

So here is the deal,
One day I was having headaches that were making me vomit and would not go away and all of a sudden (after multiple trips to the Doc and an MRI, pain meds that were useless, a neurologist that looked confused, and a neurosurgeon that seemed unfazed) I had a needle stuck in my brain and am being told I cannot go back to work until further notice. I am STILL very weak and am so freaked out that I cannot tell which symptoms are psychosomatic and which are genuine. I am changing my diet trying to start yoga and attempting to wrap my head around the fact that my seemingly storybook ending has plot twist like this.
....Not married 30 days and she was diagnosed with a grade 2 astrocytoma on her left frontal lobe; yep right on top of her motor cortex (why I am SO tired). The doc said it looked like it webbed across my brain so surgery is not an option b/c it isn't just a mass.
I do not know if I will have to leave my job, however I may have to take disability. Stephen, give me your fax # and I will get a copy of the pathology report to you and Charlie. Mike and I are looking into MD Anderson in Houston and SPORE Programs for excellence in tumor research in California, Birmingham, and Raleigh, among others. We are going to fight this with everything I've got. IF I GO DOWN I WILL GO DOWN SWINGING!!!!!

AT this point my husbands parents were on a month long cruise. Needles to say we kind of ruined it for them. SORRY GUYS.