So, Tuesday I'm having brain surgery...

[Pure]

best wishes,

in this fight for life. keep up your courage and remember how many of us want to see you regain health.

 

[Noor]

Oh darling grace... I've put my family through a couple of real ugly situations this week. I've been just plain ugly. But they do seem to understand... God love 'em.

And now, whatever it is, decadron or the dilantin, I'm having horrible hives. I itch all over the place... constantly. Going to have to call the doctor tomorrow. I can't stop taking those pills but they are making me miserable, too.

ADR,

I am sorry I have not written anything either, I have been watching this thread since you started it. I am glad you are doing so well.

The ugly situations are probably from the Decadron, the steroid. My brother had a brain tumor, surgery and radiation so I am very familiar with the whole thing. He did not know his own strength when he was on that stuff and was very irritable until he got used to it. It also gave him jowls for a bit, but they went away when he stopped taking it.

The hives could be from the dilantin, my brother had to be switched to tegretol. I would call the er or emergency number for the doctor now, because hives can be internal as well which could be dangerous. You can NOT go off dilantin cold turkey, it is way too dangerous.

Based on my brother's experience, if you do radiation make sure you use all the skills you have while being radiated in case your brain needs to set up new pathways. Stuff like driving, etc... the normal things of life.

It sounds like you are recovering from the surgery quite well, other than the hives and ugly stuff. Don't be surprised if you favorite foods change a bit. My brother went from liking boring cold cuts to hot & spicy. One of his friends who also had surgery took a dislike to chocolate afterwards.

You didn't say what part of the brain it is in, but I am suspecting right based on what you have written. If so, it is important to keep doing things that involve prioritizing and decision making if you get radiation. It doesn't matter if its real or games but you need things that will make you think. Even something as simple as figuring out bus schedules or playing mahjong can help.

If there are any questions, I or my brother can answer, please let me know.

Noor

 

[A Desert Rose]

It's a real uplifter to see some new posts here... especially by people like Noor and Pure. Amazing Noor, that I've read your posts for a long time and we've never had any interaction before this. Thank you, Pure and Mr.Mann, for your kind words.

I had a functional MRI done today and saw the oncologist.

It was not all good news... once again. Next Monday I see my neurosurgeon and I believe he will schedule another surgery for me at that time. According to the oncologist, the surgeon will de-bulk the tumor (take out as much as he can) and then I start chemo for an indefinate period of time. I will be taking temodar, 5 days a month, for Lord knows how many months. The good news is... I will not lose my hair because there will be no radiation, at least not at this point in time.

There is a "high probability" (the oncologists words) that this tumor will not go away and will in fact, become more malignant and fast growing (in medical lingo, a Stage 3 tumor.) It is malignant now, but just slow growing although it has begun to invade my right lobe.

I have more tests on Thursday, before I see the surgeon on Monday.

The doctor okay'ed me to go back to work next week. But I'm not sure for how long, since he will schedule my next surgery, and soon, I hope. I want to get this all behind me as quickly as possible. I've put so much of my life on hold since this all began and it's time to take back some control. Going back to work is a good first step in that direction.

I need to think positively that I can and will get well. It's amazing that I don't feel sick and yet I have this big ol' tumor growing in my head. And sometimes I hear the bad stuff more loudly than I do the positive stuff. That's a fatalist for ya. And that's the reason I take Jane with me to these appointments.

I've been blessed with some wonderful friends and aquaintances, both online and in real life and I hope to someday repay them their kindnesses.

I know for sure that God will repay them.

 

[Evil_Geoff]

Hey ADR,

You are still in my prayers and thoughts.

And if you need a real ass thrashing to take the edge off, I'd be happy to oblige... *weg* Well, what else are friends for?

{{{{{{{{{{{HUG}}}}}}}}}}}} Keep on hanging in there!

 

[A Desert Rose]

Hey ADR,

You are still in my prayers and thoughts.

And if you need a real ass thrashing to take the edge off, I'd be happy to oblige... *weg* Well, what else are friends for?

{{{{{{{{{{{HUG}}}}}}}}}}}} Keep on hanging in there!

You have no idea how badly I could use a session of "real ass thrashing" about now. And that IS what friends are for... ;D

 

[A Desert Rose]

ADR,

I am sorry I have not written anything either, I have been watching this thread since you started it. I am glad you are doing so well.

The ugly situations are probably from the Decadron, the steroid. My brother had a brain tumor, surgery and radiation so I am very familiar with the whole thing. He did not know his own strength when he was on that stuff and was very irritable until he got used to it. It also gave him jowls for a bit, but they went away when he stopped taking it.

The hives could be from the dilantin, my brother had to be switched to tegretol. I would call the er or emergency number for the doctor now, because hives can be internal as well which could be dangerous. You can NOT go off dilantin cold turkey, it is way too dangerous.

Based on my brother's experience, if you do radiation make sure you use all the skills you have while being radiated in case your brain needs to set up new pathways. Stuff like driving, etc... the normal things of life.

It sounds like you are recovering from the surgery quite well, other than the hives and ugly stuff. Don't be surprised if you favorite foods change a bit. My brother went from liking boring cold cuts to hot & spicy. One of his friends who also had surgery took a dislike to chocolate afterwards.

You didn't say what part of the brain it is in, but I am suspecting right based on what you have written. If so, it is important to keep doing things that involve prioritizing and decision making if you get radiation. It doesn't matter if its real or games but you need things that will make you think. Even something as simple as figuring out bus schedules or playing mahjong can help.

If there are any questions, I or my brother can answer, please let me know.

Noor

I want to address some of the points you made here. This tumor is in my Left frontal lobe. As I said before, only 9 people in one million get this thing and the oncologist called it "an uncommon uncommon tumor."

I was on the steriod for only 2 weeks but yes, I do believe it had something to do with my uglyness (is that a word?)

The hives are stress related, not drug related. I have a poor picture of them on my arm. Mostly they are on my forearms and the backs of my hands. I try not to scratch them but wake up many mornings scratching the hell out of them, in my sleep. And being a nurse myself, I know not to stop taking a drug like Dilantin, cold turkey. It's important, as you know, too.

I won't be getting radiation. But I agree that using all of my brain is a must and I will start doing some of the things you've reccommended. I think I'll go back to playing backgammon and spades again, online. I used to love playing those games.

I have to be seizure-free for 3 months (in both Nevada and Arizona) before I can drive again and I'm now down to less than 2 months left. The last thing I want to do is get behind the wheel and kill someone. I was so blessed that it didn't happen while I was driving to work that night but instead happened after I'd been there and had 4 other nurses in the building who knew just what to do for me.

I'm also amazed at how many people have had or know someone who's had a tumor... such as yourself. It's good to know that I'm not alone in this.

Thank you so very much for your post here. It sounds cliche' but it does mean a great deal to me.

 

[FurryFury]

I'm thinking good thoughts about and for you!

Fury

 

[graceanne]

I'm praying for you.

 

[babiesmiles]

My prayers are for you

 

[RJMasters]

http://i7.photobucket.com/albums/y266/eqoaseveredamage/bestwishesforrox.gif
Continued thoughts for you.

 

[Antfarmer77]

Toughts and prayers hon...thoughts and prayers

 

[brioche]

I think that you are blessed in that you are feeling well and that it is slow growing. Don't listen to all of those people who are saying that it may turn into a quick growing one. If it does, you can deal with that THEN. No point in looking ahead and worrying.
I do believe that positive thinking and well-being can do so much! So try to "look on the bright side of life."
We are all pulling for you! Think of all that positive energy!

 

[@}-}rebecca----]

The following is a poem written by a soldier for his wife

Desert Rose

I stood today and faced my doom; looked death straight in the eye.
And as I stood and held my own the fear would not subside.
Though scared I was I shook not once, despite the circumstance.
Cause miles away a woman waits for another lover's dance.
With this in mind how could I fall and not return back home?
And not go back to that perfect world that we now call our own.
As shots rang out my mind was filled with thoughts of only her.
Her hair, her smell, her perfect lips turned war into a blur.
Soon it stopped and peace returned, I looked to God above.
And thanked my Lord for one more day for me to be in love.
As we turned and started back ruins were all I saw,
except in one small piece of earth where a single rose grew tall.
I stared in wonder of how such beauty could thrive in all this waste.
And as I stared a single tear ran down my war scarred face.
It finally occured to me no matter how hard the fight
There is always one bright ray of light even in the darkest night.
That's what you are to me my dear you are my ray of light.
You're love, you're hope, you're happiness, you're everything I know.
You're the only thing I want and need,
You are my desert rose.

.: :.

This may have seemed a strange choice ADR but I wanted you to know I looked for something that pertains to how you identify with yourself. I wonder if you realize how much dignity and class you display in the face of these ongoing challenges........damn you even make the occasional and extremely understandable angry outburst look superb . You inspire me dammit. Oh now look you made me cuss.........smiles​

 

[catalina_francisco]

Our thoughts and wishes for a full and speedy recovery are still with you ADR...you have shown us all how strong you can be when faced with something of this magnitude, and I don't see that spirit to fight waning anytime soon thank goodness. Surround yourself with positive energy and remember how many people here and elsewhere really care.

Catalina

 

[Zaudika]

Hi there ADR

I very seldom get online at Lit any longer but when I saw your thread I had to take the time to read through all of it.

Ezarc and I both have always enjoyed your posts and your personality over the few years we've both browsed through Lit. Our thoughts and prayers are with you.

In addition -- I've worked in Short-Term and Long Term Disability for a couple of years now. I know at times it can be confusing and frustrating to work with the disability insurances (I hope that yours is treating you well) .. however, if you have any questions about to handle anything or if a problem comes up, please let me know and I'll help if I can.

You can reach me here, or email anytime.

Take care dear ... stay strong.

 

[A Desert Rose]

I think that you are blessed in that you are feeling well and that it is slow growing. Don't listen to all of those people who are saying that it may turn into a quick growing one. If it does, you can deal with that THEN. No point in looking ahead and worrying.
I do believe that positive thinking and well-being can do so much! So try to "look on the bright side of life."
We are all pulling for you! Think of all that positive energy!

A girlfriend gave me a book to read by Dr. Wayne Dyer called The Power of Intention. It's also very reminiscient of Dr. Norman Vincent Peale's Power of Postive Thinking.

It says that nothing is an accident. Everything happens with intention or purpose. And how we react to that is the key. We can intend for things to happen. (Kinda like what I used to say to my son when he played high school golf... "be the ball, Michael." LOL) However, I believe this has merit.

We are not here by accident. God intended for us to be here. Whatever we intend to have happen to us, will be. If we intend for things to be bad, they will be. I've decided that I intend to be well and live a long time. And I intend not to lose my hair (aaaahahahahha.)

*************

Tomorrow I see my surgeon. I hope that he gives me a date for my surgery. I want some answers, too.

The surgeon says it's benign and slow growing. The oncologist says it's malignant and slow growing. I want to know for certain what it is. I've had nothing but mixed signals from these guys since the get-go. Then of course, I've misunderstood things too... I thought he told me it was 7mm, when in fact he said 7cm. (Why didn't he just say the size of a 1/3 of a banana to begin with? That I understand.)

The nurse at the oncologist's office tells me that I won't lose my hair with chemo. Others have told me the exact opposite.

The oncologist tells me that radiation is a last resort treatment and that gamma knife is "palliative." Anyone who understands palliative knows that's not a word one wants to hear. The surgeon, on the other hand says that he can do gamma knife while he's doing the surgery.

I hope to have answers tomorrow. In fact... it's my INTENTION to have them.

;D

 

[shy slave]

Going out there to get answers seems like a positive thing you can do towards regaining control over something that you have not had any control over.

Will be thinking of you tomorrow, I hope you get all your questions answered to your satisfaction

 

[Trinique_Fire]

and I don't want any hugs or kisses posted here... please. I won't be around to see them, anyway. I've notified those few nearest and dearest to me. But, I've thought this over and decided there's no point in keeping it a secret.

Wednesday night at work, I had a grand mal seizure. (this is the first and only seizure I've ever had.) Thankfully it was in a facility full of nurses and a patient saw me go down and called for help. I'm glad I wasn't driving. A tumor was found on my left frontal lobe... about the size of a golf ball. I've had other CT and PET scans done and they can't find any other cancer, anywhere in my body. They say this is a primary site, which is good news.

I was discharged from the hospital last night (on medication) and will go back Monday night for surgery on Tuesday morning. I'm staying at my son's right now.

In the event that things don't go well, I want to apologize to anyone here who I've ever offended. Please know this is heartfelt.

The neurosurgeon is optimistic. I'm trying to be, too. My family is scared. But I think I'll be fine and back here posting again real soon.

I'm sorry to say that I don't know you well...but your thread title did catch my eye. Nevertheless, you are in my prayers. Best wishes....

 

[A Desert Rose]

I'm sorry to say that I don't know you well...but your thread title did catch my eye. Nevertheless, you are in my prayers. Best wishes....

I remember you, though... from the GB. And I remember that I like you. ;-)

Going out there to get answers seems like a positive thing you can do towards regaining control over something that you have not had any control over.

Will be thinking of you tomorrow, I hope you get all your questions answered to your satisfaction

You're so right... regaining some control is everything right now.

And then Jane emails me this today:

How are you handling stuff? I am OK, it is just that the appointment with the oncologist this week freaked me out. Sometimes I just find myself about to cry even though I know I shouldn't. We are going to get through this just fine. It just sucks and I worry about how you are handling it. And I am reading this book Roses are Red by James Patterson, and of course the detective's kid has this brain tumor. It is like it is following me.

I so love her.

 

[Trinique_Fire]

I remember you, though... from the GB. And I remember that I like you. ;-)

Yeah...I know you a bit, but probably not as well as others. Glad you remember me. I really hope things are gonna be okay for you.

 

[LadyG]

Anything you need....anything.

 

[graceanne]

I have to say that I really like your attitude about this. Just remember to allow yourself down days, too.

 

[A Desert Rose]

My next surgery is July 10th, or sometime that week. He tells me that I can't work for 6 weeks after. That kinda took me by surprise.

He told me that the difference between malignant and benign is all semantics, in the case of this kind and stage of tumor. He believes that it's still benign until or if it reaches stage 3.

I do have those chromosomal deletions (markers that are missing.) This is good news because he said that means this type of tumor is more receptive to the chemo treatments.

I have to have another MRI this week and see him next week. Barring any changes in this tumor (which I'm intending won't happen) we are on schedule for surgery in July. It means I won't be able to actually work again until the first of September. I'm not all excited about that but, I guess work can wait a bit longer. I just know that I need to get back to work soon... the bills are mounting and I just need to work.

So... that's my news. It was good news and he was upbeat. I'm happy. ;D

 

[Private_Label]

My next surgery is July 10th, or sometime that week. He tells me that I can't work for 6 weeks after. That kinda took me by surprise.

He told me that the difference between malignant and benign is all semantics, in the case of this kind and stage of tumor. He believes that it's still benign until or if it reaches stage 3.

I do have those chromosomal deletions (markers that are missing.) This is good news because he said that means this type of tumor is more receptive to the chemo treatments.

I have to have another MRI this week and see him next week. Barring any changes in this tumor (which I'm intending won't happen) we are on schedule for surgery in July. It means I won't be able to actually work again until the first of September. I'm not all excited about that but, I guess work can wait a bit longer. I just know that I need to get back to work soon... the bills are mounting and I just need to work.

So... that's my news. It was good news and he was upbeat. I'm happy. ;D

If you really get stir crazy not working you could ask if you can go sit and rock the premmies in the neonatal unit. They need lovin' too! Plus there will be other nurses around to shoot the breeze with occasionally and keep the rest of your brain entertained. Just so you are not sitting home alone in a silent house all day.

 

[kayte]

My next surgery is July 10th, or sometime that week. He tells me that I can't work for 6 weeks after. That kinda took me by surprise.

He told me that the difference between malignant and benign is all semantics, in the case of this kind and stage of tumor. He believes that it's still benign until or if it reaches stage 3.

I do have those chromosomal deletions (markers that are missing.) This is good news because he said that means this type of tumor is more receptive to the chemo treatments.

I have to have another MRI this week and see him next week. Barring any changes in this tumor (which I'm intending won't happen) we are on schedule for surgery in July. It means I won't be able to actually work again until the first of September. I'm not all excited about that but, I guess work can wait a bit longer. I just know that I need to get back to work soon... the bills are mounting and I just need to work.

So... that's my news. It was good news and he was upbeat. I'm happy. ;D

{{{{{{{{{{{{{{{{{ADR}}}}}}}}}}}}}}}}

Been thinking about you and keeping you in my prayers; for healing, for strength, along with joy.

Private Label's suggestion put a smile on my face.