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

[A Desert Rose]

http://i27.photobucket.com/albums/c170/RoxannaDanna/myMRI.jpg

 

[A Desert Rose]

I posted one of the pictures from my MRI for those of you who question(ed) whether I ever had a brain.

For the others...

The yellow area is my vision (and would be in the same place on you.) I did tests of motor, vision and speech for this particular MRI. That way the surgeon could determine whether I'd be awake or asleep during the next surgery. He's decided that I can be asleep... thankyaJeeeeeesus.

If you look at my head in the top L, you will see a gap at the top of my forehead. That's where the plate is located. I'm going to try to scan one of my X-Rays so you can even see the tumor. Unfortunately in this series of pictures, the tumor isn't visible.

After the next surgery, the plate will be larger and I think more on the top and left side of my head.

 

[FurryFury]

This is so much for you to deal with but it seems as if you are doing great. I admire you a lot for that.

Fury

 

[boz]

I like the profile view! Now I know the shape of your nose.

 

[Netzach]

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

What I'd do? (not that I'm you or I know just how you feel, but when MD's aren't telling me the same thing I go to the one place they can't lie.)

1. Get my records. Read them. If you see a lot of Greek and Latin there are things they don't want you to know - do you have a MD friend who will tanslate if you want to know?

2. I'm on chemo meds indefinitely (though they say my dosage is less than people with leukemia I looked and it's not.) I lost a ton of hair. Everyone said I probably wouldn't. Then hair started coming back in! I lost the hair 'cause I lost 40 pounds in 3 months, more likely. A lot of people don't lose hair on chemo now apparently.

3. Don't be afraid of the second opinion!

 

[A Desert Rose]

I like the profile view! Now I know the shape of your nose.

oh geeeeeze. and it's the ugliest profile, too.

 

[A Desert Rose]

What I'd do? (not that I'm you or I know just how you feel, but when MD's aren't telling me the same thing I go to the one place they can't lie.)

1. Get my records. Read them. If you see a lot of Greek and Latin there are things they don't want you to know - do you have a MD friend who will tanslate if you want to know?

2. I'm on chemo meds indefinitely (though they say my dosage is less than people with leukemia I looked and it's not.) I lost a ton of hair. Everyone said I probably wouldn't. Then hair started coming back in! I lost the hair 'cause I lost 40 pounds in 3 months, more likely. A lot of people don't lose hair on chemo now apparently.

3. Don't be afraid of the second opinion!

Great suggestions for anyone, but me specifically. I see my surgeon again next Thursday (the 15th) and plan to ask for stuff, now that you mention it.

I don't want to lose my hair. I intend not to. ;-) But did your hair come back like it was before or different? If mine were to come back even curlier, that would be all good. I just don't want baby fine straight hair... yaknow?

I know, I'm sounding preoccupied about my hair or loss of it. And in the scheme of things this is a minor thing. But indulge me, okay?

;-)

 

[Netzach]

Great suggestions for anyone, but me specifically. I see my surgeon again next Thursday (the 15th) and plan to ask for stuff, now that you mention it.

I don't want to lose my hair. I intend not to. ;-) But did your hair come back like it was before or different? If mine were to come back even curlier, that would be all good. I just don't want baby fine straight hair... yaknow?

I know, I'm sounding preoccupied about my hair or loss of it. And in the scheme of things this is a minor thing. But indulge me, okay?

;-)

My hair was baby fine straight and annoying to start and remains so - I wish I could blame the meds but I can't. (Oh the photo? I rock the wigs.)


One woman I know who lost *all* hair to chemo and had it grow back went from long and lustrous black straight hair to long and lustrous black wavy hair.

And these things matter! I get it - being mrs. potato head should have been the least of my worries but it wasn't.

 

[A Desert Rose]

My hair was baby fine straight and annoying to start and remains so - I wish I could blame the meds but I can't. (Oh the photo? I rock the wigs.)


One woman I know who lost *all* hair to chemo and had it grow back went from long and lustrous black straight hair to long and lustrous black wavy hair.

And these things matter! I get it - being mrs. potato head should have been the least of my worries but it wasn't.

Okay now there's a story I don't want to hear... she lost her hair and it came back different. I don't want different... I want what I got. LOL

Actually, I'm wondering if worrying about losing my hair is like a defense mechanism or something. What do you think?

 

[Trinique_Fire]

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.

ADR...dear...I know someone on Lit who went through a bout of cancer. She kept a log thread in the AH and posted as often as she could.

You're at the frontline of my prayers.

 

[Private_Label]

I lost the hair 'cause I lost 40 pounds in 3 months, more likely. A lot of people don't lose hair on chemo now apparently.

If you can't use marijuana (state laws, interactions and such) for the "munchies" need to eat even if you don't feel like eating, you might want to ask about Hydroxyzine (Atarax) it's an antihistamine, but one of the side effects (at least for me!) is the need to eat... something, anything... My dog is now taking the drug for similar reasons, and he eats his dinner, then immediately eats all his cookies, then goes looking for more. Before he could leave the cookies for a few days if he wasn't really interested in them, now he can't seem to get enough. In six weeks he gained 2 pounds (going from 68 to 70), if he were to continue that for a year he'd gain 17. You don't want to know how much I have gained since starting taking the drug intermittently since 2001 to handle flare ups of hives with welts, when 2 daily antihistamines + singulair don't quite keep it in check.

 

[graceanne]

And these things matter! I get it - being mrs. potato head should have been the least of my worries but it wasn't.

Once again, I gotta second Netzach. The first time I got sick I lost about half my hair, and my nails stopped growing. My hair also stopped growing (which was great for my body - no shaving ) At that time I was getting blood transfusions, I was on prednisone, and I couldn't walk more than two steps without my vision going black. Know what had me balling? The hair loss. And it's not like I didn't have hair to loose, but it still really upset me. Go figure.

 

[graceanne]

If you can't use marijuana (state laws, interactions and such) for the "munchies" need to eat even if you don't feel like eating, you might want to ask about Hydroxyzine (Atarax) it's an antihistamine, but one of the side effects (at least for me!) is the need to eat... something, anything... My dog is now taking the drug for similar reasons, and he eats his dinner, then immediately eats all his cookies, then goes looking for more. Before he could leave the cookies for a few days if he wasn't really interested in them, now he can't seem to get enough. In six weeks he gained 2 pounds (going from 68 to 70), if he were to continue that for a year he'd gain 17. You don't want to know how much I have gained since starting taking the drug intermittently since 2001 to handle flare ups of hives with welts, when 2 daily antihistamines + singulair don't quite keep it in check.

When you have crohns disease it doesn't matter how much you eat, you still loose weight. It's cause their's no absorbtion in the colon. You can pig out, and it goes straight through you like a freight train.

 

[Private_Label]

When you have crohns disease it doesn't matter how much you eat, you still loose weight. It's cause their's no absorbtion in the colon. You can pig out, and it goes straight through you like a freight train.

/me makes a big plate of cookies for Gracie

 

[graceanne]

/me makes a big plate of cookies for Gracie

Yay!

 

[ThorkelGriersen]

Damn

I had hoped that the first operation would solve all the problems. Well, fight the good fight. Attitude makes all the difference in the world, and there are a lot of people pulling for you.

Hope it goes your way from here on. Wishing you the best.

 

[sugarmountain]

Ran across this thread by accident, but wanted to wish you the best. My mom had brain surgery twice, and I know it is a scary place to go.

I'll be sending all the postive vibes I can muster your way.

 

[Bandit58]

Master Gil uses pot for nausea and pain relief, plus the "munchies" help give Him an appetite when He doesn't feel like eating (which He has to do as He's diabetic). It's illegal here but we have sympathetic contacts who help us when we need some - of course we have to pay for it but an ounce lasts Him a few months.

It was actually a doctor who suggested He try it when conventional pain meds began to have side effects. He used to get it from the doctor until he retired but now we have to find our own source of supply

 

[bronntanas]

You have a beautiful cranium...

 

[A Desert Rose]

You have a beautiful cranium...

Wish I could post the smile on my face...

thank you. ;@








and no, that's not a typo... since my early days at online games, it's been my version of an online Kiss. Think I should copyright it? LOL ;@

 

[bronntanas]

Oh thank you! and congrats on your daughter's graduation!

 

[A Desert Rose]

Master Gil uses pot for nausea and pain relief, plus the "munchies" help give Him an appetite when He doesn't feel like eating (which He has to do as He's diabetic). It's illegal here but we have sympathetic contacts who help us when we need some - of course we have to pay for it but an ounce lasts Him a few months.

It was actually a doctor who suggested He try it when conventional pain meds began to have side effects. He used to get it from the doctor until he retired but now we have to find our own source of supply

If nausea becomes a problem for me, marijuana will be my solution, too.

Ran across this thread by accident, but wanted to wish you the best. My mom had brain surgery twice, and I know it is a scary place to go.
I'll be sending all the postive vibes I can muster your way.

This is so nice, especially coming from someone who knows me not at all. I appreciate it a great deal. ;@

 

[A Desert Rose]

Speaking of attitude...

I had hoped that the first operation would solve all the problems. Well, fight the good fight. Attitude makes all the difference in the world, and there are a lot of people pulling for you.

Hope it goes your way from here on. Wishing you the best.

A friend has this in her house and while I was staying with her last week, I made a copy of it...

Attitude
“The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness, or skill. It will make or break a company ... a church ... a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past. We cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10 percent what happens to me and 90 percent how I react to it. And so it is with you ... we are in charge of our attitudes.”
-Charles Swindoll

 

[graceanne]

If nausea becomes a problem for me, marijuana will be my solution, too.

PLEASE eat it. Smoking it's worse for your lungs than tobacco.

 

[A Desert Rose]

PLEASE eat it. Smoking it's worse for your lungs than tobacco.

Well okay... I'm old and I smoke cigarettes and I've had a history of smoking pot, too ;-)... but I'll heed your advice, dolly.

LOL You so cute, Grace.