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

[A Desert Rose]

Meet my tumor

Oligodendrogliomas develop from glial cells called oligodendroglia and represent about 5% of all gliomas. They occur most often in young adults, within the brain's cerebral hemispheres. Doctors often treat these tumors with surgery followed by radiation therapy and sometimes chemotherapy. Oligodendroglioma, a relatively rare brain tumor, grows slowly as a rule and is moderately sensitive to radiation therapy. There is a malignant form of oligodendroglioma and a mixed malignant astrocytoma-oligodendroglioma, both of which are treated much like the glioblastoma multiforme.

It is actually the size and shape of 1/3 of a banana. (Someone told me today that I have a dick tumor in my brain.) It is not malignant and it's slow growing. In other words, I have some time to work out a treatment plan with my Doctor. He wants to see me again on Thursday, with my MRI films in hand. At this point he is leaning toward wanting to go back in and remove as much of the tumor as he can and then doing gamma knife (radiation) to the remainder. The reason he didn't remove it to begin with was because he had no idea what it was (malignant or begnin.)

I asked him why this happened and he told me "just your bad luck."

I am really really angry. My family (not my kids) keep telling me that this is all good news and I have no reason to be angry and who in the world could I be angry at.

I've never been sick. I've never had any sypmtoms of anything... until this seizure. I don't deserve this. I've done nothing to cause it and I've done nothing so bad as to have this happen to me. I had a craniotomy 2 weeks ago... it was no walk in the park, I can assure you. I don't relish the idea of doing it again. I'm angry. I was under the mistaken idea that he replaced my skull with my skull... Not so. I have a fucking titanium plate (the size of an oreo) in my head and will forever.

I can't go back to work yet. I can't drive yet. I have no idea when I will be able to again. I have no control over anything.

I want my life back. I want me back just as I was. I really fucking hate this.

 

[Kajira Callista]

I don't have any words to say to make you feel better or fix anything (which just totally sucks because i would love to be able to make all this go away for you).
I do want to say something though. ( I'm not so good at this so bear with me)

Being angry at what has happened is healthy, and you are a strong and wonderful lady.
I see it as the perfect combination to beat all that is happening to you right now.
God never gives anyone something he knows they can not handle.


Go get yourself all better dolly, so we can have a big celebration with lots of peanut butter cups.

I really do you lots my friend.

 

[graceanne]

Being angry at what has happened is healthy,

It is. Don't let them make you feel guilty for being angry oranything. You have every right to be angry. This does suck and it's not fair.

 

[FurryFury]

Oh my gosh!

You have EVERY right to be angry or to feel anything that you feel! Don't let anyone tell you any differently!

I know I would be furious! I had my own cancer scare once. I was enraged by it and it wasn't as rough as what you are going through.

Feelings are not right or wrong, they just are. The sooner we accept them, feel them and move through them the better off we are.

ADR, I am so sorry you are going through this. Thank goodness even as tough as it is that this thing is benign!

Fury

 

[A Desert Rose]

(Note to the reader: I told someone last night that I wasn't going to post to this anymore, but I think there are a couple of you who might want to know and those who don't care, won't read or open this thread anyway.)

I saw my neurosugeon yesterday. Here's what he told me:

Yes, he will do surgery again and I will have a bigger plate in my head when he's done. Yes, he will have to shave some of my hair but I'll probably lose the rest with the subsequent chemo and radiation, anyway. He has no idea what my prognosis is... it could be 8 years, or 20. (He has no idea where on the bell curve I fall.) The tumor is beginning to invade the right lobe, although again, it's not malignant. The tumor is on the outside and inside of my brain. And chances are, it will reoccur sometime in the future.

He is scheduling me an appointment for a functional MRI and one to see an oncologist and a neuropsychiatrist. He wants these things done before he does surgery.

Although it wasn't the best news, by any means, I have a lot of confidence in this doctor. I like him and he's a straight shooter. He's doing everything he can for me. I hate the idea of going back for more surgery and having someone fuck with my head, but if it has to be, then I'm glad he's the one doing it.

http://www.neurotraumaregistry.com/Index.cfm?file=BrainMap.cfm

This is kinda neat. If you click on areas of the brain, it gives you the function in each. (My tumor is in the frontal lobe. A few important things are in that area.)

 

[chris9]

ADR, I'm sorry to hear what you'll have to go through. Thanks for coming back to tell, though. I'm reading this thread and what you go through, sending good thoughts your way. I just don't know what to say, so I mostly keep quiet.
Your doctor really sounds like he knows what he's doing, honest and respecting. I'm glad you found someone so good.

 

[graceanne]

Well, at least now you know what to expect. I'm sorry you have to go into surgery again, but at least you've got a good doctor. And I'm sorry about your hair.

 

[A Desert Rose]

ADR, I'm sorry to hear what you'll have to go through. Thanks for coming back to tell, though. I'm reading this thread and what you go through, sending good thoughts your way. I just don't know what to say, so I mostly keep quiet.
Your doctor really sounds like he knows what he's doing, honest and respecting. I'm glad you found someone so good.

Judging by the number of views, some people are reading and I find that nice. Even if they aren't posting, many have sent me emails and pm's.

And I appreciate your post today... more than you know.

I understand that people don't know what to say. Hell, I don't know what to say... LOL. It's all such stupid bad luck. I think I'm past the "what did I do to deserve this" phase now. But, I'm still angry and I cry every single day. And most days, I feel like I just don't have what it takes to fight this thing.

I told the doctor yesterday that I was going to stop reading online about this. Too many things there that I don't want to know about, like the prognosis for one thing.

 

[A Desert Rose]

Well, at least now you know what to expect. I'm sorry you have to go into surgery again, but at least you've got a good doctor. And I'm sorry about your hair.

Yes. I've been through this surgery once now, so the next one will be easier, although lots more extensive... bigger incision, bigger plate, etc. (I was under some stress when he talked to me, pre-op, about the plate thing. I thought he replaced the skull with skull. Not so, I have this oreo sized plate in the front of my head right now. It's titanium... like golf clubs are made of. LOL)

Folks make fun of people with plates in their heads. Now I'm one of them.

I hate losing my hair, but I have no choice. I have no idea if it will grow back like this or not. The only really good thing about me is my hair and I want it back just like it is. No one can tell me if that will happen or not.

 

[graceanne]

Yes. I've been through this surgery once now, so the next one will be easier, although lots more extensive... bigger incision, bigger plate, etc. (I was under some stress when he talked to me, pre-op, about the plate thing. I thought he replaced the skull with skull. Not so, I have this oreo sized plate in the front of my head right now. It's titanium... like golf clubs are made of. LOL)

Folks make fun of people with plates in their heads. Now I'm one of them.

I hate losing my hair, but I have no choice. I have no idea if it will grow back like this or not. The only really good thing about me is my hair and I want it back just like it is. No one can tell me if that will happen or not.

Oh, pooh. Their's lots of wonderful things about you, not just your hair. You're a great friend, you're smart, you're caring, you're quick with words, and you those gorgeous dark eyes. Even without your hair you'll still be you, and we'll all still love you. And so will your children, your mother, and your friends.

 

[chris9]

Judging by the number of views, some people are reading and I find that nice. Even if they aren't posting, many have sent me emails and pm's.

And I appreciate your post today... more than you know.

I understand that people don't know what to say. Hell, I don't know what to say... LOL. It's all such stupid bad luck. I think I'm past the "what did I do to deserve this" phase now. But, I'm still angry and I cry every single day. And most days, I feel like I just don't have what it takes to fight this thing.

I told the doctor yesterday that I was going to stop reading online about this. Too many things there that I don't want to know about, like the prognosis for one thing.

I think the 'more than you know' part is what makes it really really hard to say anything.

Anyway, you're WAY more than just hair. I totally agree with gracie, 100%. You are brave and you are strong and I firmly believe you have exactly what it takes to fight this thing.

 

[Netzach]

You will be able to read about it - but not now. We can only digest certain aspects of a thing like this at a time, and you are subject to the emotions this brings up. Your family had better get more understanding and quick - this is not a freaking flu. Their reactions are normal human total denial, but you require better at this time.

As you digest some of what's going on you will be able to educate yourself more in small chunks. You will get angry, hopeful, despondant, feel a false sense of control (sometimes this is a GOOD and needed thing to get the right care) -- being a very educated person makes a MD's job better although pt's like that can annoy them - overall I think it makes you more of a teammate in forming a treatment strategy and less of a passive object-problem to be solved. Being informed is really one of the only weapons anyone has in "fighting" a disease .

I still feel weird when someone's like "I don't know how you do it" or "you're so tough" because ultimately we're thrown into illness without any more or less aplomb than anyone else - and what other options do I have? I can "fight" and wait and see if I happen to die from something stupid like a thrombus or I can toss myself out a window and seal the deal? It's kind of silly. Patient is a fitting word, though it dervies from a verb meaning "to suffer" I think that it denotes waiting is actually more accurate. We wait. And eventually, no matter how sick you are, life eventually returns to a state of living out your day instead of dedicating every day to wondering about whether you are going to get better or worse or worrying about the day after this one.

You are "blessed" (barf) with a unique insight into the human condition. Sucks, but true. All the small shit that people preoccupy themselves with between being smacked on the ass by the MD and taking the long dirt nap is really comical. It's the only thing worth living for - a joke, a sunset, a nap, a good cup of tea, another hug from the one you love -- and it's also our undoing-- Obsessions with money, status, fighting and hurting the ones we love over stupid things, 99% of what most people worry about.

You are sweating the big stuff now, not the small stuff - and it's *almost* all small stuff.

Hang in there.

 

[A Desert Rose]

Netzach...

You say so much that makes so much sense. And you're right, I will start reading up on this more... in time.

It's just so overwhelming right now. If anyone understands that... you do.

 

[Netzach]

You say so much that makes so much sense. And you're right, I will start reading up on this more... in time.

It's just so overwhelming right now. If anyone understands that... you do.

well gracie's a really good person to talk to - she said something really smart when I was freaking out early on. I'd gone onto some Crohn's community boards and talked to the people who have 2 feet of small bowel left or people who can't eat solid food anymore, I'd read that 33% of all deaths in CD patients are among people who have had a thrombus, and I threw a clot on my first major flareup --etc.

And she said well, if you're never going to get better again or if you are going to die, you don't know that today, do you?

And it's true. No one knows anything past the few minutes they're in.

Jokes are a really good thing to spend time on, the worse the better. They take up just the right amount of space. I watched *so much* South Park.

 

[graceanne]

You say so much that makes so much sense. And you're right, I will start reading up on this more... in time.

It's just so overwhelming right now. If anyone understands that... you do.

Just take it one day at a time. You'll learn about your condition in your own timing. If learning about what's wrong with you makes you wanna scream and throw somehting, then don't. Also, denial is, occasionally, a GOOD thing. Their's nothing wrong with escaping in whatever way you escape. Netzah did South Park and beading, I get online and read stories. Whatever relieves the stress.

 

[FurryFury]

I'm glad you are still posting on this thread.

That link was very interesting.

I can't imagine how angry and worried I'd be if I were in the same shoes as you.

And damn it, *HUG* I can't help it. I just had to do that.

Fury

 

[brioche]

You will get informed about your "condition" when you're ready, and it will be to your benefit. Netzach is exactly right that some doctors will be annoyed with you, but those doctors tend to be the ones that don't want you to have the full picture. I had the wonderful experience of encountering a doctor who was excited that I had taken the time to learn about the conditions I have, and he explained that it made his job easier. Here's why:
I am in touch with my body. For example, when something happens, whether it be a side effect from a medication or part of what I am dealing with flaring up, I am now AWARE of it. So when he was telling me that a medication had a side effect of anxiety a certain number of hours after taking it, I was actually able to think about it, think about what part of the day that was, and realize that I was experiencing that side effect and needed to be moved to another medication. We were able to make that decision the first day, instead of having to have me go home and journal it. I was also able to get highly specific about the problems I was experiencing. He was able to give me answers I'd been looking for for years. He called me a "body talker," meaning that I was in touch with my body and paid attention to it. I no longer need to see him. We were able to solve my problem - sort of. My dad? Was seeing him before me, and still sees him after. (NOT a body talker)
Some of your doctors are going to want you to be a patient. They're going to want you to be an inert little lump that will respect their authority and do whatever they think best without challenging them. Don't. Make sure you understand what's going on and be a part in everything. Stay informed - but only as informed as you think you can handle. It takes some of the feelings of powerlessness away. And try to learn about your body and how it's reacting to this. It takes a while to do, but after a while it's an unconscious process.
The doctor you're talking to sounds like a good one though - he's making sure you're understanding the process.

Remember - there's a reason it's called informed consent.

 

[ShyGuy68]

I wish you all the best ADR!! I'm confident it'll go well, and you'll be back all healty again soon!

 

[A Desert Rose]

Thank you... thank you... thank you for all the nice words

I want to go back to work and I'm going to call the Doctor tomorrow and beg him to give me permission to do so. (And under the right circumstances, I can beg well.) I have rides to and from, so I won't be driving. And those giving me rides are nurses, who know what to do in the unlikely event that I do have another one. (I can drive again after 3 months, as long as I'm seizure-free during that time. On the 25th, it will be one month since my seizure.)

The last 2 days haven't been really good but today has been great. And I found a couple of really positive websites to read.

One (the American Brain Tumor Association) says that only 9 in one million people get this type of tumor... I think that makes me kinda rare. And my tumor accounts for only 4% of all brain tumors. They have also identified abnormalities on 2 chromosomes (1p and 9q) which might play a role in the development of these tumors. I think I'm being tested for that.

Being someone who has never been sick, this episode has given me a very new and better perspective on patient care. I appreciate every thing that's been written to me on this thread and taken it all to heart... I assure you.

Those of you who've posted here or contacted me, need to know how very much it means to me.

 

[bronntanas]

ADR, with or without hair, you're gorgeous.

Everyone's different, but my sister lost all hers with chemo for breast cancer. It came back baby fine and about twice as curly at first, and a darker shade of red than it had been before. As it grew, it did lighten to something closer to her original shade, but it never was quite as blondey red as before. As it got longer, and the strands got healthier, some of the curl went out of it. It's about the same as it was before, curl wise. She also said that when she spoke to her oncologist about how fine her hair was, she told her to take pre-natal vitamins for a months because they have extra calcium and stuff to make your bones strong.

Anyway, I hope you're feeling better now that you know what's going on.

 

[shy slave]

We all knew you were a rare person ADR

 

[A Desert Rose]

ADR, with or without hair, you're gorgeous.

Everyone's different, but my sister lost all hers with chemo for breast cancer. It came back baby fine and about twice as curly at first, and a darker shade of red than it had been before. As it grew, it did lighten to something closer to her original shade, but it never was quite as blondey red as before. As it got longer, and the strands got healthier, some of the curl went out of it. It's about the same as it was before, curl wise. She also said that when she spoke to her oncologist about how fine her hair was, she told her to take pre-natal vitamins for a months because they have extra calcium and stuff to make your bones strong.

Anyway, I hope you're feeling better now that you know what's going on.

Pre-natal vitamins? I will definately talk to him about that. I want my hair back!!! just like (or as close to) it is. I really do have nice curly hair...

I'm so sorry about your sister... is she better now? What's her prognosis?

 

[A Desert Rose]

We all knew you were a rare person ADR

Now there's a laugh if there ever was one... LOL and backatcha.

 

[bronntanas]

I'm so sorry about your sister... is she better now? What's her prognosis?

Thank you for asking! I had to do the math and then call and ask her; it'll be 7 years ago this summer, so her prognosis is good. She had a partial mastectomy and she did the harvesting thing, so her second two children were carried by another of our siblings.

You do have cool hair, but y'know, you're lovely anyway.

Oh yeah, and I have a metal plate in my head too. (I had a cerebral hemorrhage from playing rugby.) Mine's only about the size of a quarter though. I was actually disappointed the first time I went through a metal detector and didn't set it off. I was only kid at the time.

 

[Mr. Mann]

ADR,

I think bald chicks are pretty sexy, myself.

It is hard to say something nice without sounding completely corny and idiotic.

But please know that you continue to be in my thoughts. Sending you warm hugs, cold wet washcloths, or a nice footrub... as appropriate.