Doctor Doctor!

So, I saw the uber-neurosurgeon. He was very nice, intelligent, and concerned, the nicest of the specialists I have seen so far.

Just to back track... this is the kind of tumor I have...

So, I had the ct scan. And, I have results... The tumor/mass is this (copied from the ABTA ):

"Epidermoid cyst/tumor:

These cysts are more common than dermoid cysts. They are usually benign, but they will slowly recur if not removed completely. Unlike the dermoid variety, they occur more frequently in the brain than in the spine.

Epidermoid cysts are most common in middle-aged adults. The most common sites in the brain for these cysts are the cerebellopontine angle (see figure 3) and the pituitary area.

The treatment of choice is surgical removal. "

Dr. B, confirmed what I pretty much already knew... it is all about location, location, location.

This epidermoid or chordoma tumor is in the worst possible spot it could be in, very near the nerves and vessels that supply the ear and entire right face/throat area.

Surgery would be extensive and difficult.

There would be a high percentage of a chance of losing hearing in my right ear, and facial paralysis, as well as other posibble difficulties.

This is also the same prognosis if the tumor grows significantly.

His recommendation is this: Have the repeat 'closed' MRI, under sedation, in early December at the MS Center. Come visit him afterward with that new MRI, and the old ones, from April, that he reviewed today.

Dr. B. will then compare them and see if the tumor is behaving as expected, which is being very slow in growth and non aggressive.

If yes, then we will keep watching. If it's growth is extremely minute, less than a 1/2 a millimeter a year, it could be some 20-30 years or never before I have symptoms.

If it is slow moving, it will be a wait and watch for the rest of my life.

If the tumor has changed in size or appearance, in six months, or at any point it changes, then we will discuss options then.

All of which are not pretty. Which sucks. Chemo or radiation or other injection therapies will not work on this type of bony tumor. <sigh>

And, makes me feel like I have a time bomb in my head, well, because I do.

So, how am I taking this?

I am relieved and frustrated all at the same time.

I was hoping for a more concrete resolution. And, that is just not happening. I was hoping for a plan with a beginning and an end. Not a beginning and many options... but, it is what it is.

Relieved that I do not have to have my head shaved and brain cut into any time soon. However, the possibility still looms. Ugh.

It will take me a day or two to get my head around this, I guess. I feel like Cin's picture of the woman trying to hang on to the brain again! LOL

Thank you for all your prayers and support. I do feel you with me.

be well,
Dawn

Tags: brain tumor, skull base, surgery

Livin' on a Prayer

A survey to keep the mind thinking other thoughts.... 

Feel free to play along!

1. The phone rings. Who do you want it to be?

Kathy or Karol.

2. If you had to kiss the last person you kissed, would you?

Yes, it was one of the kids!

3. Do you take compliments well?

Depends on the compliment, I suppose, but I guess so.  I usually get embarrassed a little.

4. Do you play Sudoku?

Every once in a while.  Pumpkin was on a kick of Sudoku for a while and I would be her 'check' person.  lol

5. If abandoned alone in the wilderness, would you survive?

I would like to think that all of the educational shows I have watched and books I have read would save my hide.  I think Les from 'Survivorman' has taught me well!  LOL  (Of course, that is without taking any of my chronic illness issues into account.)

6. Do you like tongue rings?

No.  Awful looking, health risks.

7. Did you ever go to camp as a kid?

Yes, with Girl Scouts.  Having to pee in a wood shanty latrine with spiders and no sinks, really did NOT do it for me.  It was the last time. 

Some people consider it 'camping' when you got in those big beautiful well stocked RV thingys... but to me that is not 'camping'... that is RV-ing.  LOL  I could do that... but probably won't anytime soon.

8. How do you feel right now?

Hmmm, frustrated, nervous, a little angry, and tired, since I am not sleeping well.  (basically like the picture below... thank you, Cin!)

9. Could you date someone with different religious beliefs?

Absolutely, and I did, back when I was in the dating pool.  It is about mutual respect and tolerance.

10. Do you like to pursue or be pursued?

Oh yes, who doesn't, however, those days are long passed!  Now, the only thing persuing me is a shameless yellow lab looking for scraps!  LOL

11. Use three words to describe yourself at the moment.

Loving wife and mother.

12. Do any songs make you cry?

Occasionally, if I am in a mood.

13. Are you continuing your education?

Always.  You should never stop learning, or stop the pursuit of learning.  Ever.

And, the more I know the less I know.  You know?

14. Do you know how to shoot a gun?

Oh yes.

15. If your house was on fire, what would be the first thing you grab?

Kids, hubby, parents, pets.

16. Who was the last person you shared a bed with?

After getting the kids up, ready, and driven to school, I went back to sleep with Pumpkin, the almost 12 year old black kitty, and Libby, the aforementioned yellow lab.  We had a nice nap.

17. Favorite children's movie?

Ooooh so many... Sleeping Beauty, See Spot Run, Cats and Dogs, Toy Story, The Lion King.... the list goes on and on... I'll stop though.

18. What color are your eyes?

Blue, with rays of gray.

19. How tall are you?

5' 5"

20. Hair color?

Medium blonde, but with help, light blonde.

21. Any secret admirers?

I sincerely doubt it.  Except for Russ and Gaz... really guys... no means no!  LOL

22. Have you ever taken pictures in a photo booth?

Oh yes, many, many times!

23. Do you like mustard?

Yes, all kinds as long as they are smooth.  Don't do the gritty ones.  Eww.

24. Do you look like your mom or dad?

Amazingly, both.  And, I look very much like cousins from both sides of the family, enough so that I had been taken for their sisters at different times. 

25. How long does it take you to shower?

Not long, probably 10 minutes.

26. Can you do a split?

I used to be able to do both a regular split and a russian.  I was a good gymnast and dancer.  <sigh>  Those days are loooooooong gone. 

27. What movie do you want to see right now?

The Pirates of the Carribean movie.  Coming up I want to see the Transformers Movie and the New Die Hard movie!  How could I not... girl of the 80's that I am!  Bruce looks smokin' hot in the commercials!  I was impressed!

28. What did you do for New Years?

Went out for a yummy dinner, and then had 2 couples and their kids over for snacks, dessert, drinks and to watch the ball drop!

29. Do you like egg nog?

Yes, I do.  A lot.  Yum.

30. How many hours of sleep do you get a night?

8 - 10 would be nice...but it is usually less if I add up all the awake time.

31. Do you know how to whistle?

Yes, but not the kind using your fingers, too.

32. What do you buy at the movies?

Usually a seltzer water and some popcorn.

33. Do you know how to play poker?

Yes, I learned Stud and Draw poker as a kid from my dad, and I learned Texas Hold 'Em a few years ago.

34. Do you wear your seatbelt?

Always, unlike our stupid dang NJ governor!!!!  (Although, I did say right from the start that he had better do a free public service announcement, and he did.  It started playing on the tv and radion before Memorial Weekend.)

35. What do you wear to sleep?

Just a tee shirt.  If I get real cold, I will put on pj pants and socks.

36. Anything big ever happen in your town?

Not really.  We did have a tv special done about our town about twenty years ago because of its 'volunteer' spirit.  I think that is about it.

37. Is your hair straight or curly?

Neither, more like wavy.  I usually straighten it.

38. Do you like funny or serious people better?

Funny, or I would have been in a straight jacket long ago being married to my Hubby.

39. Ever been to L.A.?

No, and it really isn't that high on my list of places that I want to go to, either.

40. Ever been out of the U.S.?

Yes, but only the Carribean and Canada,so far.

41. Do you hate chocolate?

This question scares me.  Are there actually people out there who answer 'yes'?  <<<shudder>>>

42. Are you a gullible person?

Hmmm, some may say yes, because I like to think the best of people first.

43. Do you wear glasses?  Contacts?

Yes, mostly contacts, except when my eyes need a rest, then glasses.

44. Do you have socks on right now?

No, but I do have on my multicolor pastel slippers with the cushy insides!  LOL

45. Are you easy to get along with?

I think so, and I have been told so in the past.

46. What is your favorite time of day?

I don't really have one.  I like the morning when it is just Hammer and myself and I am having my first cup of coffee.  I like the afternoon when Fuzzy and Pumpkin are home and playdates and fun is happening.  I like at night after the kids go up to read and sleep, because that is my alone time with Hubby.  And, I like times like now when everyone is sleeping except for me, because it is just me time.

47. Do you like pink?

I like the color and the singer!

48. Do you like babies or toddlers better?

I love babies.  Before they start crawling away from you... I just love that time of sweetness, you are their whole world, and they are yours.  Just such a wonderful fleeting time.

49. Any pets?

One dog, two cats, one hamster.  Three kids, one hubby.  Two parents.  'Nuff said.

50. What's your favorite month?

November... my birthday, anniversary, my mom's birthday, and my favorite brisk fall weather.

51. What gives you the most joy?

Easy... my kids.

52. Favorite music?

I guess, pop and rock, and most anything from the 80's.  I like all kinds of music though, some country, punk, dance music, classical, metal, blues, jazz... all of it.

Okay... that's it!  I am going to do some reading after taking a 'sleepy time' pill.  Hopefully, it will calm my nerves and I can zonk out. 

7am will come soon and I have to get the kids up and going!

be well,
Dawn

Tags: survey, meme

Heaven

       <---- Italian-American men, making zeppoles at a fair

What are zeppoles?

Ahhh... as anyone living in the Northeast, or in any area with a significant Italian-American population can tell you... Zeppoles are heaven.

They are poofy little dough balls, deep fried, drenched in confectioners sugar and thrown into a bag! 

YUMMY!!!! 

(similar to Funnel Cake, but softer and better and sweeter!)

be well,
Dawn

Tags: zeppoles, yummy, dough ball from heaven

Keep Me Hangin' On

What does one do when faced with going to the Skull Base Tumor expert Uber-neurosurgeon on Tuesday?

Well, I am not sure what 'normal' people do, but I do research!

Here is a picture of the interior of the skull base, what the brain actually rests upon. 

Brain removed for good interior viewing.

Now, here is a picture that I can use to show you exactly where my 'Thingy' is growing.

Okay, see the round red area that says 'Jugular Foramen'?  Good.  Now, right above that and behind that arrow there, is a roundish dark area before the whitish area. 

THAT is where my tumor is hanging out.  Half attached to bone, half not.  It is the petros apex, just above the carotid (jugular) canal. 

Okay... class dismissed....

for now....

be well,
Dawn

Tags: skull base tumors, skull base anatomy, crazy person

Cruel Summer (it will be fun not cruel, but I like the song)

'Tis I, the Princess of Memes and Surveys!

It is time for the Summer Survey... you know the drill... after you read mine, copy and paste and do it yourself!

S U M M E R S U R V E Y

Pool OR Jacuzzi : jacuzzi, but I don't get in them enough!
Ocean OR Pool : pool for swimming!
Ice cream OR popsicles : ice cream... yummy
Lemonade OR iced tea : Mostly iced tea, real iced tea.  However, I love real homemade lemonade on the boardwalk or at fairs.
Tennis shoes OR flip flops: Totally depends on what I'm doing. Walking: sneakers.  As much as possible I do wear my Merrell flip flops in the summer, they just hug and support my feet just right!
Fans OR Air conditioning : Air conditioning ROCKS!
Sprinklers OR slip n slide : Sprinkler.  Slip and crack your head open?  No thank you....
Water Balloon fight OR Water gun fight : Water guns are faster to fill.

Y O U R F A V O R I T E S U M M E R . . .

Drink : Water, iced coffee, brewed iced tea or fresh lemonade
Food : Grilled veggies, burgers, watermelon
Song : I am in NJ, so it has to be any BonJovi or Springsteen!
Hang out : Town pool, any where near a beach or pool
Camp: Camp???  I don't do that.
Holiday : 4th of July and seeing my kids in the town parade!
Vacation: Wildwood Crest.... the ultimate pearl of the Jersey Shore.  Cape May is great too, but better for couples.  Wildwood is the family place to be.

L A S T S U M M E R :

Where did you go :  Wildwood Crest
Who did you hang with? My hubby, kids and parents for the whole week, Kathy and J for a few days.
Did you do anything illegal : Nope, not a thing!
Did you go to a concert? Nope.
What was your best memory : Just the kids all playing together.  And there was this time when they were all on the bed with J watching tv... it was so cute... I think I have a pic...

Fuzzy is missing, but this is Pumpkin, J, and Hammer.  Cute!

T H I S S U M M E R :

Where are you going : Supposed to go to Indianapolis for my cousin Kim's wedding, and stop in Ohio at the Football Hall of Fame.  However, everything is a bit up in the air with brain surgery looming.  :(
Name five things you're most looking forward to this summer :

1.      Spending the time with my kids.  I love when they are home from school and are with me all the time!
2.     Having no schedule to adhere to each day, no sports, no homework!  Yay!
3.     Going down to Kathy's to visit and swim in her pool!
4.     Getting to visit with Karol, and having her boys stay over!
5.     Doing fun day trips!

This was fun wasn't it?  Now, it is your turn... so sayeth the Princess!

be well,
Dawn

Tags: Summer, survey, meme, family, kids, fun

A Hard Days Night

That about sums it up for me today...

I was the bug.

Not a lot of fun in that. 

Although, I did have a lot of fun today. 

Fuzzy had a ball game at noon. 

It was 90 odd degrees, too hot, too humid, too sunny. 

One boy even threw up from the heat.  Not a lot of fun.

They lost, but they really didn't play badly. 

Kathy came up to visit with my sweet little nephew J, who somehow made it through the ball game!  Not easy at 4 years old!  Half the time, Pumpkin was there to help keep him occupied, but then she had dance.

Little J only came for one thing.  The church fair.  And, the fun house!  He remembered it really clearly from last year and couldn't wait to get there and do it again! 

Poor baby... had to wait until 6pm until it opened... all day, he was asking about that fair!  LOL 

Finally, we went and he did get to do his fun house about 7 times!  And, he played games and won some useless goodies to torture mommy and daddy with!  LOL

I forget sometimes, that with the lupus it can really make you sick being out in the sun and the heat. 

Maybe that is what happened to me today, because I really felt badly tonight. 

I did try my best though.  I tagged along with Hammer, and we had a really nice time together.  :)

I also had zeppoles, and they were yummy... another highlight of the evening!

<FONTSIZE=4>Other things were not so good.  I felt sick, my legs were very shaky, and I just felt poorly overall.  Very hard to describe.  I just didn't feel right.  And, that can be so damn frustrating.

Well, tomorrow is another day. 

be well,
Dawn

Tags: lupus, too hot, too sunny, baseball, fair, carnival, sick, tired

I Can See Clearly Now

 

Update:  ALL DONE AND GUESSED!

Time for a Movie Meme, to follow the Book Meme! 

This one is interactive...

A.  Pick 11 of your favorite movies.
B.  Then pick one of your favorite quotes from each movie.
C.  Post the quotes in your journal.
D.  Have everyone leave a comment with their guess.
E.  Place the guesser’s user name/name directly after the quote.
F.  Extra points for knowing the actor or character’s name!

Good Luck!!  Don't head straight to the internet to look them up, let's see who can guess some of them first!!

Here are my quotes... and I didn't pick Moonstruck, because you all know how much I love that movie and the quotes in it!  LOL

1.     "Try to imagine all life as you know it stopping instantaneously and every molecule in your body exploding at the speed of light."  (Guessed by erarein63, Ray, Dan Akroyd, in 'Ghostbusters')

2.     "There's no way, *no* way that you came from *my* loins. Soon as I get home, first thing I'm gonna do is punch yo mamma in da mouth!"  (Guessed by Psychfun, Buford T. Justice, Sheriff, from 'Smokey and the Bandit')

3.     "Wrong, a long time ago we knew each other for a short period of time; you don't know anything about me. It was easy back then. No one had a cushier berth than we did. It's not surprising our friendship could survive that. It's only out there in the real world that it gets tough." (Guessed by erarein63, Nick Nolte in 'The Big Chill')

4.     "What we do in life echoes in eternity." (Guessed by erarein63, Russell Crowe, as my man Maximus, in 'Gladiator', yum)

5.     "Everything is on its way to somewhere." (Guessed by erarein63, John Travolta, as George, in 'Phenomenon')

6.     Man 1: And remember, this gun is pointed right at your heart. 
     Man 2: That is my least vulnerable spot.

(Guessed by erarein63, Rick (Humphrey Bogart) to Captain Renault, in 'Casablanca')

7.      "The only thing that separates us from the animals is our ability to accessorize." (Guessed by Psychfun, Claree or Olympia Dukakis in 'Steel Magnolias')

8.     "I mean, not many girls in contemporary American society today would give their underwear to help a geek like me." (Guessed by Psychfun, The Geek, Anthony Michael Hall in 'Sixteen Candles')

9.     "Will someone get this big walking carpet out of my way?" (Guessed by Psychfun, Princess Leia, Carrie Fisher in Star Wars {orig.})

10.    "When you grow up, your heart dies." (Guessed by Psychfun, Goth girl, Ally Sheedy in 'The Breakfast Club')

11.     Woman: You're not the man I knew ten years ago. 
       Man: It's not the years, honey, it's the mileage.

(Guessed by erarein63, Karen Allen, as Marion, to Harrison Ford, as Indiana Jones, in 'Raiders of the Lost Ark')

WOW!  Two people and every answer is ferreted out!  I thought Paul  would get on here or Dan and rock out a few, but hey, ya snooze... ya lose!  LOL   Thanks for playing with me!

I know that some of you will get a couple of these right away... but I am curious to see how it all goes!

be well,
Dawn

Tags: meme, movie quotes, coffee