new symptons with possible regrowth..just venting

[tenai98]

ok I see  the radiologist and another ENT this thurs to discuss more treatment...I now feel the tumor is bigger. I am having new symptoms that I didnt have before....Now its a constant 'coldness' on upper check...not painful but annoying. Also the novacaine feeling on upper lip and nose area....plus very low grade headaches/pain behind my AN eye and forehead...that I only notice when relaxed...I think the most annoying part is the novacaine feeling....I dont want to give up my Mexican vacation but will if its necessary...but MRI isnt scedule til Feb'10...so I might as well go and enjoy myself and deal  with new treatment later....I try to keep everything low key with my family....until I have all the facts...I also tell myself, that its NOT terminal and its Treatable...just may take time....I fear facial paralysis. as I guess we all do...but if it happens, I will deal with it....I WILL NOT take the 'why me' road. I have always told myself that I do not fear death but I do fear dying...Death is easy, dying is hard...but this is not deadly...just a big  bump in the middle of my highway to life...It may take several attempts to get over it, but with perserverance,I will succeed..
Sorry, just had to vent..
JO

Happy New Year

[msmaggie]

Vent away, my dear!  I have always known that I can go through something once with some semblance of sanity and courage, but when it happens again, I fall apart.  When my son was in 4th grade, he fell and injured his kidney.  I was his cheerleader, keeping his spirits up and being strong throughout his hospital stay.  When the the kidney started bleeding again 2 days after we brought him home, I cried and carried on as if it were terminal!  I think we get through something the first time because we don't know what to expect, and you just do the best you can and keep going.  The second time?  You already know how hard it really was, and all your defenses start screaming at you to duck!

You are right...go on your vacation and have a blast!  Use it as a way to keep your mind on fun, positive things. The same strength that got you through the first time will get you through again, albeit kicking and screaming.   We will be here to hold your hand and offer all the prayers, suggestions, and advice we have at our disposal....and that amounts to a lot!

Thinking of you and sending hugs,
Priscilla

[carter]

we had different treatments ... i had ck in Jan 2008.  in the year, i have lost 98% of the hearing in the AN ear ...  i have also gained the numb/tingly feeling in my face - about the lower 1/3.

my neurosurgeon says that it is damage created by the radiation.  he says that things are close in this area ....  he says that the nerves for the feeling in my face tented the tumor and it got damaged. 

guess what - my tumor has actually shrank in size!  the last 2 MRI's showed a smaller size.

do th eMRi's and find out what is goping on ---it could be swelling - it could be nerve damage - or it could be growing ....  i pray for teh lesser of these!!!!

as to time away ...  after i was told that i had a tumor, teh wife and i went to Hawaii to enjoy life ...  i did forget about the tumor for a week  ---- the dr that i saw at that time suggested that we go ---- live for today!

so go on vacation ---- deal with the mri, etc when you return ....  i do not drink so i can't say to have a beer on me ---- but enjoy a good limeade and enjoy the time away.


and do not let teh little bastard win!



carter

[cin605]

I say definatly take that vaca.
My tinitus actually went away south of the border.....maybe it was the warm breez or the Dosakies at 10 am .
2 months after vaca. at er w/ major tinitus,vertigo...the rest is history.....retro. 6/26/08......next mri 6/10.......feeling something is still not right.

[Jim Scott]

Jo ~

I think your feelings are quite rational.  You're worried about a re-growth and fear what's next but until you have a definitive answer, I would do what I could to stow the fears until you've had the MRI scan.  Although the tumor may be growing and your symptoms are real, you might also be hyper-sensitive to any changes and the re-growth, if it's occurring, may not be as dire as you think.  Of course, I hope that is the case but because you won't find out for certain until early February (and the MRI scan) I concur with the previous posts that are encouraging you to take that vacation to Mexico and try to enjoy yourself for awhile. 

Your determination not to indulge in self-pity as you go through this is wise and admirable, although often easier said than done.  Venting is always helpful and if you can't vent here, then where? 

Know that lots of folks are following your situation (via the forums) and rooting for you, Jo.  I think you'll get through this and conquer your AN once and for all, very soon.

Jim

[wendysig]

Hi Jo,

You seem to be looking at this whole thing with a very realistic attitude.  Take your vacation and deal with the problem of possible growth when you get back.   The new symptoms sound unsettling to say the least but I think you have the right idea.  Have fun now, worry later.  In the meantime, vent whenever you need to.

Wendy

[Vivian B.]

Hi Jo,

You have a great attitude. I say take the vacation. It took me about 6 months after my diagnosis to realize exactly what you have said. Now I wish I wouldn't have stressed out so much. Stress takes a toll on you. It is what it is and we have to deal with it. I am a disability case manager and I work with claims and see much worse and sometimes we just need to put things in perspective. I am with you. Live for today!

Vivian

[leapyrtwins]

Taking a vacation has my vote too, Jo.

You definitely need some time to relax and destress.

Just my two cents worth 

Jan

[CHD63]

Jo .....

Relax and enjoy the warmth of Mexico!  You deserve it!!

Thoughts and prayers.

Clarice

[tenai98]

oh ya Clarice
I'll be enjoying the warmth for sure...we just had our first cold snap....I'll be in Mexico for a month coming home on Jan 31...then on Feb 3 I get my Baha turned on, have another MRI, hopefully see a doc in there somewhere, and then its off to Florida for themonth of March...Then and only then will I become pro active against this Booger....
JO

[suboo73]

Hi Jo,

So sorry to hear about your new symptoms - it has to be very frustrating!
But i am SO GLAD you are here to vent - get all those bad feelings out so you have more space for the good ones!

I agree with Jan and others, you definitely need to go on the Mexican vacation, so you can relax and get away from it all!
I love to travel and wouldn't mind being somewhere warm in the near future - so go and enjoy!!!!!!!
In fact, i keep thinking that one day i won't be able to travel anymore (due to the AN). 
Well, as long as i can afford it, and even if i need to use a wheelchair i am going to keep going!

Keep us posted on your progress when you can.

All my best to you and your family for a wonderful, relaxing vacation.
Have a Happy New Year!
Sincerely,
Sue