about 2 weeks since i heard the words "AN"

[Jim Scott]

Carter:

Thanks for updating us.  Your positive attitude will be very beneficial to you during your treatment and recovery, which I pray will be both smooth and rapid.

Meanwhile, enjoy the 'mothering' and remember, hair grows back.  Lets hope your AN never does. 

Jim

[calimama]

Hey Carter,

Glad you found this great site and seem to be taking this who process in stride. Sorry you were miss diagnosed for so long...i think this is pretty common as these ANs are rare (although you would never know it from this site!). I complained of one-sided hearing loss and tinitus 3 years before. But can't turn back the clock.
Glad to hear that your wife is spoiling you and that you are getting the information you need to make a decision you are comfortable with. I really think that the diagnosis, making a decision and waiting for treatment is worst that the actual treatment and recovery, so you are on your way to getting past this.

All the best with the next steps.

Trish

[carter]

last week, i had restraining mask made, second MRi, and CT scan. 

i went to different hospitol for the MRI - Hillcrest _ Tulsa.  the tecs were great.  they made me very comfortable and explained all aspects.  they assigned a person to escort me from place to place and to make sure that i was taken care of. 

i took a valium and this also helped.  this was my first experience with such a happy pill.  they work!!!

the hospitol got me through all tests quickly and no delays.  vein puncture for dyes at MRI and CT.



now i wait for the schedule for the cyberknife.  i called today to see when it would be ..... later this week or early next??  i have to admit my stomach is tied in knots ....  and they did not call back today .....   i just want to get it done so i can get to feeling better .   waiting is the worst?

[carter]

one thing that we as a support group should do is develop a diet to be followed while recovering and or being treated or waiting to be treated.

in the second consult with dr heaton, my wife asked about beating fatigue.  the doc said to eat a balanced diet.  my wife talked about weight watchers.  teh doc recommended this.

woaaaaaa ....  tonsils gets you ice cream.  wisdom gets you milk shakes.

a brain gugger gets you a low cal diet?  what is wrong with this picture??

i recommend that we institute an AN diet of peach cobbler, steak, french fries, fried cheeze sticks, etc.

what would your diet recommendations be?

[sgerrard]

what would your diet recommendations be?

Haagen Daz ice cream, alternating between Chocolate and Coffee for variety. 

Feed your soul as well as your body; good spirits is a good antidote to fatigue.

Steve

[carter]

cyber knife ---  9:30 CSt DEC 4
OKLAHOMA CYBER KNIFE

WISH ME LUCK

[leapyrtwins]

Haagen Daz sounds great to me - make mine Chocolate Chocolate Chip, please 

Carter -

good luck with the CK tomorrow.  I'll be thinking about you.

Don't forget to update us.

Jan

[sgerrard]

cyber knife ---  9:30 CSt DEC 4
OKLAHOMA CYBER KNIFE

WISH ME LUCK

You got it. Wishing the very best for you,

Steve

[carter]

thanks for the support and prayers..... 


got call saying to move it out a half hour ....

waiting for treatement was the hardest time to date as the mind played games such as what if this or that.  last night, my wife and i went out for a nice dinner.  we talked a bit and just said lets get this over with .... i stopped reading the info on the internet - as i was content in my decision.

i took 3 tylonol pm's and slept all night.

set alarm early and went to work for a while ...   i think that i will take a valium before the treatment?  a terrible thing to say ... but i am afraid of what my mind will get into as i lay there for an hour?  just thinking .... i had rather be occupied right now.

set aside a couple of bob dylan discs to listen to

set aside a camera to ask techs to help record the event ....  i almost want to write :filled with radaion in a very questioning manner ......  nerves are on edge i guess after all.

i have considered writing a blog to describe the various steps for others ... but i am afraid to ---a fraid that if i were to look for a job in the future - this could be used as a reason to disqualify me as the comapny would be afraid of future medical costs??

please excuse my writing on  it does help to make me think through the siuation rather than to let emotions rule.

i say my prayers and feel that i am doing the right thing.   the little bast&(%%^rd will not win!

thanks
carter

[wendysig]

Carter,

I hope my good wishes for you are better late than never.  Good luck today.

Wendy

[carter]

to appointment... tech met my wife and i

then dr heaton came to meet with us ..... said the AN was really large.  it is now pressing the brain stem.  she is worried about the location ...  she has it scheduled for 3 treatments.   we talked and she said she was unsure of hearing preservation over teh next 2 years.....

bottom line

break treatment to 5 rather than 3 .....  get me on steroids now ---- do first treatment on Friday.......... 

my mind  is at all time low.   i do not even know what to do or think??

got script filled  at pizza and waiting for valium to wear off so i go back to work.


my mind is fried$^%&$%&

carter

[Debbi]

Carter-

Oh, man - that's a setback.  Try not to get discourage, though.  Trust your docs to get this thing stopped in its tracks.  And, eat lots of whatever treats you most like.  And, don't be surprised if the steroids make you feel like an amped-up squirrell on a feeding frenzy. 

keeping fingers and toes crossed for Friday.  Hang in there!

Debbi

[carter]

i allow time for the valium to wear off and go to work.  i expalin to all and the boss that the treatments will be delayed and why --- all of the time my stomach is in my mouth.  trying hard to hold emotions back ....  it is hard to verbalize about hearing to be lost, more risks, etc.  i ended upwriting it out after i could not verbalize it to one person.  others respected me enough to leave me alone until i talked


then my wife calls.  oklahoma cyber knife calls her and wishes to move the treatments to next week.

i am torgued by this time ...  and i am fallign into total confusion about what is actually happening. i now have to explain another change to everyone ...  i am not sure that i am up to this.

 i talk to the tech that is trying to reschedule, i talk to the nurse ..... i tell that i have lost all confidence at this point in time.  i am asked to come in do the treatment and wait around till any valium wears off and then talk to the doctor.  she can then explain everything ....and i will have a clear head.


i do not think so ....  by then i am totally committed and have lost all options.  treatment number 1 is complete ....geeze!!!!!@#%%^!#$^


so i start to write out my questions and prepare myself for the visit on Friday.  and my mind is more full of thoughts ... here i had made up my mind that cyberknife is the way to go -- i was told that ii had an excellent chance of retaining hearing, low down time, low risks of complications,and had time on my side.

today, i have almost every positive ripped away from me. 

i had had the prescription for steroids filled and a dose taken ... i hope that the valium did nto let my guard down enough to have caused myself some secondary issues??

i am not sure if the tumor has grown rapidly or if the doctor missed this in the first visit? either way - itis time to get something done .....

i wrote the dr an email and asked for time to talk tommorrow before any treatment ...  i have to get a full description of what my chances are of hearing retention, complications  and decide if i can have enough confidence in the facility to continue. i wanted her to be able to address my deep concerns and give me straight answers.

i feel that i am totally scared now - what the heck should i do?   start the entire discovery process over?  live with doubts, or change my mind?  and the little bast)*(&rd is already on the brain stem.

sorry for rattling on - but muy mind is pure mush tight now and i am hoping that getting my thoughts down will help to make something clearer ....  i need to do something to ease my mind!!!!!

i just said a prayer to God askingn for his help.  i need it!


carter

[mk]

Oh, Carter, as I was reading your post I felt as if I was reliving my story. I found myself in a very similar situation just one week before my scheduled treatment. I had made my decision and felt confident after the consults I had, and then all of a sudden some doubts were raised by some of the doctors about the size (very similar to yours), the risks etc. I wasn't very concerned about my hearing (I have pretty much accepted the fact that most likely hearing will be gone at some point, after all this is what happens to most ANers). But I was scared to death about the possibility of swelling - being so borderline in size.
Like you felt that I might have to start the consultation process all over again, but I knew that it would be probably a useless waste of time, as I had already spent so much time researching this.
At the end, I went through with the treatment. I was in shock ... as if I had been diagnosed once again. I spent the next few weeks worrying and second guessing my self. But after all, although the GK team in Toronto is not super friendly (far from it - but it's the only one available in Ontario), it seems that they did a very good job. They actually used a slighly lower radiation dose, and they "repositioned' the frame twice, whatever that means. I didn't experience any swelling and haven't had any other issues up to now.

As you can see, I can really understand how you are feeling. If you feel the need to consult more, you should by all means do it. No matter what treatment you chose there are risks but the doctors will not really proceed with treatment if they think that it may put you in danger. Don't make any hasty decisions. At the end, it is your gut feeling that counts.


All the best,
Marianna

[sgerrard]

Yah, that does not sound like fun, Carter. Extra ice cream for you after all this.

It sounds reasonable to me to go to 5 treatments with a larger AN, to spread the dose out a little more. I'm would think your risk of complications or hearing loss is still less than with surgery, even if it is not as as low as you would like. It certainly is upsetting, though, to have this kind of development at the last minute. I feel for you on that - and for Marianna, who it sounds like went through much the same thing.

I hope you get some good answers to your questions and are able to regain confidence in your treatment. Still wishing you the best,

Steve