This 'aint easy

Its beena long time

2010-09-11T21:17:00.002-04:00

Well 2010 has been great....I had my angered gallbladder removed in June...I tried to make a deal with it that it could stay just as long as it behaved.....but lets just say that it kept playing around with all the gall stones and made my life miserable for a few months

The summer was awesome.....with weather like that we enjoyed our pool and our central ac this year. We also had a few weekends filled with wonderful family visits.

I had my one year follow up with Dr. selesnick and all is well there. THey do not see any regrowth and are optimistic that I will not have to go through that HELL again!! If my mri is unchanged next year then I will be released from his services. So all in all things are moving along.

2010

2010-01-01T10:03:00.002-05:00

Hello New Year!!

I spent last night laughing alot witha few great friends that I really have not seen in a while. I also enjoyed watching my husband get silly on the bottle plus of wine he drank.

I hope everyone had a great New Year and spent it exactly where they wanted to be!!!

2009-12-19T09:18:00.002-05:00

Sorry it has been so long since my last post but I lost the username and password.

So whats new...well.....over the past year so much has changed I do not know where to start. You all know I had my surgery in April. Hubby opened his own business and we have been very blessed (prob a little too blessed) with the amount of work that has come our way. The summer was great and would have been better if it didnt rain every single day!! The fall was uneventful also. In December I lost my grandmother who was 93 years young. I am sad to never see her again but realize that she is right where she was begging to be for the last few years....in heaven!!

2010--I am hoping for an awsome year!!!

Merry Christmas and Happy New Year to you all!!!

Helloooooooo

2009-09-25T20:30:00.000-04:00

I am not sure if anyone is still following me but wanted to just let everyone know that things have been going good. I have great friends and a wonderful family. What else does anyone need?

Guess whats gonna happen in 9 months???

2009-07-30T21:10:00.002-04:00

No its not another baby---darnit! Thats my follow up. Everything looked good on the MRI and he is inpressed with my walking, and lack of symptoms. So all in all it was a very long trip but worth the satisfaction to know that Mr. T has not come back to visit. What do you mean you ask? Well there is a slight chance that the tumor could grow back and I would need to go through the surgery again....gasps.......but we are thinking NO GROW thoughts!!!

SOOOOOOOO

2009-07-24T21:21:00.002-04:00

Well I have my 3 month follow up with Dr. Selesnick on Monday and Lane Bryant is having a super sale.....coincidence I think not!! I also have to go have my hearing checked again....yes AGAIN!! It really got me thinking though that maybe they expected it to come back a little and were leaving that to be a surprise. So on my walk the other today I tried one of the ear buds to the MP3 player and........................................................................................................................................................................STILL DEAF IN THE RIGHT EAR!!

2009-07-12T09:41:00.002-04:00

Well I have been walking every night with my daughter in her stroller. The stroller I guess was acting as sort of a walker for my balance because the one night I went by myself I seemed to be all over the road. So if you saw that drunk appearing woman walking the other night that was me.

Whats new?

2009-07-05T15:35:00.001-04:00

Well I have started excercising and watching what I eat....I am hoping to lose a ton of weight. (I will settle for any amount at this point)

My head feels good!!

I have been in the pool a few times...damn the weather!!!

How are you?

2009-06-19T18:47:00.002-04:00

That is what I have been hearing all week since I have been back to work.

I made it through week one and stupid me thought I might be bored my week back.....HA...I guess bored and Annie Charette don't go together. Thanks for keeping me busy this week Annie!!!

Funny

2009-06-12T22:42:00.003-04:00

Isn't it funny how upfront and trusting some people are with total strangers. I mean some parts of my life are secret..well at least I would only tell my special blog friends about it. I went to Lake Placid today (yes I drove myself...yayyy). I met a young girl in her early 20's that proceeded to tell me: she may be miscarrying, she is on her 2nd marriage,she is a grandma since her husband has children older than her, that this is her 3rd miscarriage etc etc....I swear she could not stop talking. I was just trying to read the recent tabloids about Jon and Kate and she just proceeded to keep talking. If I though that she was actually in need of company I would have obliged but I think she was in need of making someone go "WOW".

Its Final

2009-06-09T20:39:00.001-04:00

I am set to return to work on Monday. I am not allowed to bowl until further notic which makes no sense to me. My daughter weighs over 30 lbs and the ball weighs like 12. But whatever!!

Being Patient

2009-06-04T20:24:00.001-04:00

Well I still havent received my paperwork back from the MD....so worse case I will not be able to return to work as planned.

he called

2009-06-02T21:39:00.002-04:00

Dr Selesnick did call yesterday afternoon. He said that I cannot bowl until further notice, I can go back to work on 6/15, and he wants to see me in 2 months. He also stated that the titanium in my head will not set off metal detectors and I can go into MRI machine.

So at least one more trip to NYC this year.......sigh.............

Waiting

2009-06-01T10:46:00.002-04:00

I have never been a patient person but when you have no choice but to wait .....well....it still sucks. I am still waiting on the surgeon who missed last weeks appointment to call me back or email me.

On a different note--my sister and her kiddos are coming for a visit on Wed. Let the snow fly!!! (she is from Va and was wishing for no bugs when she came up---blame her for the snow)

My Day

2009-05-27T22:18:00.002-04:00

So we left at 11:30 am for 2 appts in NYC. One was suppose to be at 2pm with Dr. Gutin and the other at 4:00pm with Dr. Selesnick. We barely made it in time for Dr. Gutin (21/2 hours for 1 hour drive). He saw me for 5 minutes and said that he is discharging me and that I should do all of my follow ups with Selesnick now. When I asked how and what they closed my skull with after the surgery he said probably titanium but that Selesnick did that so I should ask him. I also asked what was causing the sunburn type pain to my torso and again he guessed it could be nerve root pain.
After the appt with Dr. Gutin me and my hubby went to get a bite to eat. I checked my messages and there was one from Dr. Selesnicks nurse saying that he could not make appt today but I needed to continue on with audiologist anyway. WHAT??!! They forgot to tell me about 3rd appt for the day. SO we had to sit around till 4:30pm until that one. And guess what......she told me I am deaf in right ear...NO REALLY!!!!

So I guess Dr. Selesnick will call within the next few days. I still do not have return to work date, disability paperwork signed or answers to my questions. SO we drove over 6 hours to say goodbye to neurosurgeon and to have another hearing test that could have been done at home.

At least they have good shopping down here!!!

Here I go again......

2009-05-26T11:34:00.002-04:00

So I am packing again!!! I think that their should be people you can hire that will pack and unpack you for trips. To be honest we never actually fully unpacked from our last trip 10 days ago...I mean whats the purpose.

Hopefully I will find out some answers to my questions and get the sutures out of my back!!

NYC here I come again.......

2009-05-25T09:26:00.003-04:00

Well we are once again getting ready to leave for the good 'ole NYC tomorrow for my Wednesday follow up. It started as an exciting idea to travel into NYC and now its getting to be a bit too much travel for this girl!

PAIN

2009-05-22T09:22:00.002-04:00

OK so now I have started with a sunburn type pain on my right front and back. No rash or redness just constant pain when I touch the area or move it. Most likely related to nerves but ever so annoying.

We have been getting bills trickling in from Sloan for the first week I was in the hospital. So far they do not want any money yet but want to let us know how much they are sending to insurance. Any guesses on the amount so far?

$62,500.00 Holy crap---this is only for the surgery time spent in the hospital. Can you imagine if I decided to go with the other surgeon and hospital that was not covered by my insurance!!!! I am thinking by the time this is done my insurance could have purchased a nice house for what they are paying out!!! It will be interesting to see how much they charge for the week in ICU with beefed up nurses.

whats your excuse?

2009-05-19T13:51:00.003-04:00

So today started calling to coordinate my follow up appointment with the two surgeons. Still not done. Feeling a little better everyday. I even ventured out and went food shopping yesterday. My hubby is the best and has really been helping out alot!

I found this book online and thought that the title was funny.....every senior/ blond moment I have now I will have a viable excuse.....
Maybe I will have have a t-shirt made up!!

There really is no place like home........

2009-05-18T09:32:00.002-04:00

We made it.....I got to sleep in my own bed last night for the first time in over 3 weeks. (and no Ann C. this does not mean I can come back to work yet)

My follow up is on the 27th. Yes I still have to go back there again.

Side effects seen now:
Hair loss--probably from the anesthesia and the decadron after ---it is comming out in large clumps now----I am glad I started with alot
Soreness- my back still is a bit sore from the "ice pick"
Head- muscles still sore in my neck but all in all getting better
Wobbliness- still here---but getting better

Home

2009-05-16T20:28:00.002-04:00

I am back in NJ. We are leaving in the am for home!!!! Even though my in-laws are the best it's still being HOME!!

Recap of my week: Alot of laying around and watching tv. I guess I was sort of forced to take it easy this time. I must say that I did see the nurses alot alot this time. Probably because they had orders to come tap me hourly. I did end up with my own room for a week and yes the food was not that bad this time. I really need to be careful of what I am typing om my "magic blog" now. Everything I complained about I had to re-live.

New outlook---I am happy to be alive and out of the hospital. ME=GOOD

2009-05-16T10:41:00.000-04:00

Nah nah nah nah...Nah nah nah nah..Hey hey hey..Goodbye sloan kettering....On my way back to jersey now...Stiches in my sore back from the catheter coming out......Cannot wait to see my daughter.

2009-05-15T10:57:00.001-04:00

Well heart monitor is off and spinal cath is capped. A few more hours of being dry and they will pull it. Still praying for no leaks today(or ever)that would send me into another surgery. Today really has to be my DDAY!(DRY DAY)

2009-05-14T20:29:00.001-04:00

So another 24 hours being tapped. Still no leaks. I have been up walking and even shoved this melon in a sink today. I am so looking forward to getting this spinal catheter out tomorrow. Dr gutin came in today and i tried to talk him into pulling it this evening but he just laughed and stated "bitch bitch bitch" and laughed. Its like he knows me.

2009-05-13T22:49:00.001-04:00

Its me.....I am stilll in icu getting tapped hourly. So far no further leaking. So if all goes well they will pull cath out on fri and i will be discharged over the weekend. I really cant tell you how homesick i am. Almost going to be a month gone and half of that away from family. The nurses on this unit are wonderful but once the drain is out then i will be transferred back to the other unit.I hope we do not have any more setbacks and its smooth sailing. Feel free to leave text on my cell...I have lots of free time right now. Miss you all.

From Patty's FB Posting....via Phone

2009-05-12T18:54:00.001-04:00

"Is in icu till at least friday. If i leak again then have to have my melon reopened. Dry thoughts for me or i will be stuck in nyc."

Not sure yet....

2009-05-11T19:23:00.003-04:00

For you FB users you already read her status....but here is for those of you that do not.

She will be in ICU for at least another four days, and if things do not progress as they hope she may have to have her "melon" opened up again.

I tried calling to find out more so she will call back when she is able. Until then I do not have to why's of it all!

Brigg

UPDATE:
The doctor said that it is not common for this to happen so far into post-op, but this is Patty and if it will go wrong it will happen to her! (no really thats her luck).
They will monitor her and if all goes as expected she will be released, otherwise they will have to operate to find and repair the leak. But they are very hopeful!

2009-05-11T15:26:00.003-04:00

Just spoke with Patty...her spirits are up and she is dealing the best a person can. She started leaking fluid through her nose again so they up'ed her draining. She is every hour at 15cc's at the moment. (Ken misinformed us before, it was always every hour, not every three).

They will try to taper it down again tomorrow and see where it goes from there.

Her headaches come and go of course, but again she sounds good......
although she refers to her situation as being "tapped like a keg" lol, and is happy that she had a chance to have her toes done so that she has something pretty to look at, thats our girl!

Send all good thoughts her way and wish that she can come home to us soon!!

Briggette

2009-05-11T08:33:00.000-04:00

Hi everyone!
As you have read or heard our girl is back in ICU. They warned her that this might happen so she was prepared, not happy of course, but prepared. Her words…”they stuck a very large catheter in her back and not the happy epidural kind you get when you have a baby”. They are draining her CSF (Cerebrospinal fluid (CSF), Liquor cerebrospinalis, is a clear bodily fluid that occupies the subarachnoid space and the ventricular system around and inside the brain. Essentially, the brain "floats" in it.) Sounding pretty smart aren't I (thanks to Wikipedia)
So..
A nurse is going in about every three hours and draining 10cc. to help relieve the pressure. Which of course will cause a major headache. Hopefully she will be released at some point tomorrow (Tuesday).
I will update again when I get more info, or Patty will if she gets the chance.

Briggette

2009-05-10T08:38:00.001-04:00

I am back inn icu at sloan kettring. I noticed some clear fluid pour out of my nose for most of the part yesterday so i called the resident on call for dr gutin. So now i am here for a few days with a large catheter in my spine and nurses draining it every one hour. I will try to update when i can. Happy moms day.

Ouch..I woke up today with

2009-05-09T21:14:00.001-04:00

Ouch..I woke up today with a feeling like i drank water too fast..Then later today myright nostril started dripping. Back to nyc now to check

Saturday

2009-05-09T12:27:00.000-04:00

Well it has been 12 days past surgery. I am so happy to be this far!!!

Today I will try my witts at getting my piggies groomed. Nothing to make a girl feel great but letting someone rub her feet.

Things are still the same. No real improvemnent except I am no longer taking the percocet for pain.

Its our week!!!

2009-05-08T11:20:00.000-04:00

Just a reminder to hug your fellow Nurses this week. If anyone at work is still looking for gift ideas here you go:

1. POOL HEATER

2. Money is good also

2009-05-07T21:24:00.000-04:00

Well today I felt more short of breath and dizzy so I didn't get a chance to go shop (therapy) the first part of the day. I tried to walk around on uneven surfaces outside to try to get my balance right again. My head seems to be losing weight everyday but maybe just not as fast as I would have wished. Theres always tomorrow!!

Side effects seen so far:

1. SSD (single sided deafness to right side--this will not change)
2. Lost of taste for anything but cold/sour
3. Left thigh still numb--not sure if its from laying for 7+ hours on that side
4. Dizzy, vertigo , head feels like its floating above me
5. Loopiness----prob the percocet though

Facial nerves all seem to be intact still....so we shall see when I will rock the rest of this!!!

Today

2009-05-06T19:00:00.001-04:00

Well today has felt a little better on the melon than the last couple. Still have lost of muscle stretching and dizziness but if the feeling that I had a 100lb ball stuck to the outside of my head would go away I would be happy!!

I have been trying to build up my tolerance to car rides and walking by having my husband take me somewhere every day. Yesterday we went to target for 1/2 hour and today to Michael's. Gotta love it in the city when rehab has to deal solely with shopping (next surgery you have Brigg I am bringing you down!!!)

Oh and did you hear the news of tht lady in Long island that was all prepped for her brain surgery and the surgeons never showed up....I guess all my downsides with my experience I at least had my 2 surgeons show up!!!

My most annoying list!!!

2009-05-04T20:23:00.000-04:00

Things that annoyed me while being a patient:(my personal accounts)

1. Not seeing a nurse or a Patient care tech for most of the day...a simple "hey" would have done
2. Not being offered a toothbrush, swabbette or even a washcloth for the first 48 hours--enough said!
3.People who come to visit their loved ones and then get a phone call on their cell...so instead of staying in their loved ones room they go outside of yours to make long loud phone calls...THANKS!!!(sometimes it wasn't even in English)
4. People who can't pick up the meal trays in a timely fashion...I mean 3 1/2 hours really!!
5. Nurses who tell you..."you know I only have two hands" after putting your call light on and getting ignored for over 1 1/2 hours!!!
6. Bubbly patient care techs that come in and turn the light on and expect a conversation at 1:00am---this one even tried to rearrange my room to her liking until I asked her to leave!!!
7. Having the nurse check my inciscion every day and telling me it looked great and then when I finally asked what it was held together with they thought they should turn on the light??!!!
8. You spend 5 days in bed without eating, in nausea, are vomiting and the thing that makes everyone happy is that you pooed??!!
9. Being told by the MD that you were ready to go at 8:00am but not getting to leave until after 1pm.
10. Knowing that carrying around that "nurse Gene" could make you do circles around these guys but you are too sick to show them!!!!

the next 48.......

2009-05-04T20:18:00.001-04:00

The post below is actually first just in case you want to stay in order......

THe next 48 hours----Everyday my little surgical team would come in and check me---Open your eyes, smile, close your eyes, lift your hands, pull down on my hands, lift your feet etc etc....I guess when I realized that this was starting to annoy me thats the day I knew I was getting better. I really had no appetite until Saturday. I started eating some lite food Sat afternoon and this still continues until now. I have a very strange metallic coating in my mouth which makes it a chore to eat. I can only feel texture and can't really taste anything so whats the point.

I remain on pain meds, steroids, stool softeners, laxatives and prilosec for a few more weeks now.

2009-05-04T12:45:00.000-04:00

Surgery Day:
Today was a bit numbing to say the least. I had to get up at 3:30am to leave by 4am. Not too much of a feat such I want allowed to shower, wear deodorant or eat.

Once we arrived it went pretty fast. Dr. Selesnick came in and said his hello's. I did not meet the anesthesia doctor like I thought I was suppose to so I wheeled into the OR drug free. Which caused much stress and I was a mess by the time I got to the room. After they got me onto their cot they immediately gave me something and about 2 minutes later put the mask on and that was it. They did not shave my head until I was already out so my husband could not give them tips! (prob a good thing)

7 hours later I guess they were done. I don't remember much. Just waking up with that feeling that you don't have your senses and things are not right. I remember allot of pain and allot of nausea. I also remember allot of throwing up. My husband waited almost 3 hours for me in recovery and they still could not get me settled so they ended up still letting him in.

My husband recalls me trying to rip everything off including the bandage to my head. I remember hearing the nurse and the aid talk about a mean mean patient doing this and in my head felt sorry for him....LMAO!!! I guess I had torn everything off and they were actually going to have to get me a sitter but I ended up settling a bit.

From what my husband recalls: They were able to get it all out. So hopefully no radiation will be needed. I was very swollen for the first few days with my head all disproportionate but that's getting better (well at least back to normal).

THE NEXT 48 HOURS
I was put on the neuro observation floor. I am not sure if the nurse/patient ratio was 1-100 or if I was just that much of a pain but I did not see the nurse or the patient care techs (nurses aids) very much. The PCT did vitals and the nurses did meds so between them both I saw someone maybe 20 minutes total a day.

Now I didn't really need much---pain and nausea meds, fresh ice and maybe a wash cloth. They work on a call system that when you push the bulb a nurse comes on a speaker and asks you what you need. Then they bring it to you so they don't have to walk down twice. The concept is good if the nurses really got the message or if they had time to bring you what you wanted. I can remember that one night that the smell of my left over dinner tray was making me nauseous so I had my husband go out and look for a cart to stick it on, which he could not find. So I then pushed my bulb and asked them to come get it.......that was at 6pm......I then pushed it again at 7pm and asked them if they forget "NO we will be in when we can'. At 9:30 pm when it was time for my vitals I made them take it with them. IT seems that they all have assignments. The IV team does IV's, the lifting team do lifting, the nurses do meds,and the PCT do the vitals. Well I guess I needed room service for the tray and they were too busy!!!!! Still a bit frustrated!

FWD:

2009-05-03T17:55:00.000-04:00

From what I am feeling you would think this incision was wrapped around my head a few times. Its actually pretty amazing as there are no sutures or staples. It is all held together with glue. Just to think that after all of these years they are still going to the basics....whats next duct tape?? This is my incision...it is pretty bruised but I think its a very lean looking one!!!!

FWD:

2009-05-03T17:53:00.001-04:00

Pix

Its a great day in the universe...I got to shower!!!

2009-05-03T17:43:00.000-04:00

OK its really me again....Thanks to my sis (you know the one who is not as cute...wink wink) for keeping all of my peeps updated.

I have so much to tell you of this long journey that I have been on but just wanted to give you all an update for now.

I was released today and am now back in NJ. My follow up is not until next Monday the 11th so I think we may just e staying down here until then. I am feeling alot better today as long as I don't sit or stand or open my eyes...lol. Compared to the previous days I can see some improvement with everything so that is a plus. I will give my day to day reports in the upcomming days so stay tuned.

Please forward mail back to my home residence as I do not want to overwhelm my in laws too much. Talk to you tomorrow !!!

Day Five (sorry so late)

2009-05-03T00:37:00.000-04:00

Sorry this is late. It was a busy day today. I called Ken's cell phone around 6 this evening and was able to talk to Patty. It was so nice to hear her voice. She said that the first two days were the worst but she feels much better today. She actually ate something today. She is hoping to get released by Monday but has to wait and see. I am sorry but I didn't ask her if she would be up to calls. I will ask her tomorrow and post it ASAP!

Thank you all for your concern and prayers for my little sister.
Love
Kelly

Day Four

2009-05-01T17:34:00.000-04:00

Praise God!!! I just talked with Ken and Patty is doing so much better today. No tubes, hardly any pain meds and she was able to walk around a bit. Ken sounded much better today with Patty's progress. He also said that she will be in the hospital over the weekend and hopefully will be able to be released on Monday. Ken also said that Patty isn't up to any phone calls right now but would let you know when.

Thanks again for your concern for my little sister. Continue to pray that her recovery goes well.

Kelly

Day Three

2009-04-30T20:55:00.001-04:00

Well, I was actually able to talk with Ken a little bit today. Patty is still in some pain and is very nauseous. I thought that it was the meds that were making her sick but it's not. The area where the tumor was taken out has to do with balance/equilibrium. So she is still sick. Ken was saying that the doctors had hoped she would be further along in recovery but the nausia is making it very difficult. He also told me that the rehabilitation person may push her a bit tomorrow to get her more mobil. Please continue to pray for Patty to heal and not feel nausious and for Ken who sits by her side comforting her as much as he can.

We love you Patty!

The Day After

2009-04-29T18:01:00.000-04:00

Hello all, just a little update. Ken left a message saying that Patty is in some pain and is also nauseated. He didn't say why, but I am going to assume she is taking morphine which makes one very ill but takes the pain away. He also said that this would be the worse day of recovery. Thank you all for your continued prayers. I will continue to update as I get updates.

Praise the Lord!!

2009-04-28T16:50:00.000-04:00

Ken just called and said the surgery went very well. They were able to get the whole tumor. He won't be able to see her for another hour or so. He is tired and anxious to see her. Please continue to pray for her and Ken.

Patty,
I am so happy that you came through this. You are very strong and brave. I know this was not easy for you. I also know that your friends and family helped you in so many ways to get through the last six weeks to this day. With tears in my eyes, please know I wish I could be there with you. I love you very much. Your sister Kelly.

Update on Patty

2009-04-28T15:14:00.000-04:00

I know you all have been waiting all day to hear something. I just called Ken and he said the surgery started at 8:00 this morning. The gave him an update around 1:30 to say that they were ready to take the tumor out. He also said they should be done soon and that they would be giving him another update around 3:30. I will let you know what he says.

Thank you all for your prayers and for thinking about Patty, Ken and Taylor at this time.

Love
Kelly

Ok its four am and

2009-04-28T04:03:00.001-04:00

Ok its four am and i am on my way to nyc again.

Give me strength....

2009-04-27T20:24:00.000-04:00

Well as you can see from the post below I did make it through another MRI. This time it was only about an hour in the "coffin tube". And I know inquiring minds want to know ...yes I did take a few Xanax before the test.
Allot of people think that every time I have tests done I automatically tell them that I am a nurse and I can honestly say that I don't. I would rather stay quiet sort of rate each nurse, tech, phlebotomist and receptionist. There are a few smart ones that seem to catch on. Such as today...I had a new MRI tech and a seasoned one. The new one couldn't figure out how to get the cap off of the razor. When I was trying to talk her through it the seasoned one entered the room and when he asked me where the tumor was so he could place the stickers I blurted out" Its a right sided acoustic neuroma that starts in my auditory canal and ends at the brain stem". This little bit of info and he knew I was a nurse.
This will be my last post on this blog until I am back on my feet. My sister will continue to update while I am out. Once again I want to thank everyone who is still here and following my story (life). It really means allot to me and my family!!

2009-04-27T15:20:00.001-04:00

So the mri is done. I have eight of these stuck to my head and yes they had to shave little areas on both sides of my head. The big shave is not until tomorrow. I wonder if they do eyebrows...Mine need some shaping?

We here

2009-04-26T21:30:00.000-04:00

OK we made it to NJ. Tomorrow I have to have another MRI in NYC. Then we drive back to NJ and then we will leave very early in the morning on Tuesday to go back into the city.

We are off....This time its

2009-04-26T11:35:00.001-04:00

We are off....This time its the real deal!

Where has my mind gone?

2009-04-25T20:00:00.000-04:00

I cannot believe that this surgery is 2 days after tomorrow. I know that I have waited for this for six weeks now but I have really tried to put it in the back of my mind till now when it feels like its being slammed back in my face.

My week was quite busy---On Thursday me and another nurse went to Plattsburgh for work. The trip started good until I left my purse at the doctors office and didn't realize it until it was way after hours and were were miles away. Thank goodness their was one person left in the building. Then on the way home the driver in the car in front of us decided to take out 4 mailboxes and then almost flip. Then he drove away. We pulled over and called the cops and while we were waiting a trooper happened by and pulled over. I, in great detail, explained what we had saw. The trooper kept looking at me and shaking his head. Then he decided to leave and we asked if he needed our information in which he stated "sure" and then looked at me. So I gave him my phone number and date of birth and such. I then very cleverly remembered what next week was going to bring and responded"I know this is going to sound funny but if you are going to call me could you please do it before Tuesday since I am going to NYC for brain surgery". He stared at me for a moment and then He then left .The other nurse and I got back in the car. We were just about to take off when the other nurse looks over at me and starts laughing uncontrollably. It seems that when we left the restaurant and started on our way home I was having issues with my bangs and found a big purple bow clip that belongs to my daughter and stuck it into my hair right on top of my head. I can only imagine what the officer thought of me.
Today I sat out in the sun with my daughter, my friend Brigg and her sons. I should have been cleaning my house but I kept thinking that if something happened to me in the next few days would my daughter remember the clean house or would she remember mommy playing outside with her all day?

and...

2009-04-22T20:35:00.000-04:00

Well I am trying to tie up loose ends at work. Tomorrow will be my last day there (not forever but until I have recooperated). Then I will tie up a few loose ends at home until we leave again on Sunday.(OK I want to obsessively clean my house)

I am having a hard time believing that the surgery may even take place this time. I am waiting for a phone call to say that a part of the pre-op did not turn out and that we have to postpone this again.

I will continue to have my blog updated while I am out whether it be by me or a family member so tune in. I have even figured out how to update via my cell phone. My husband will be updating a few people via phone but cant call all of you!!!

Oh the fun

2009-04-20T23:03:00.001-04:00

So the day started out with us arriving 2 hours early for my appointment (damn the traffic...lol). I sat and spoke with Dr. Gutin and his nurse who are both very down to earth people. He made me feel like I had known him for some time. I will have to go back on Monday for another MRI. They want to repeat this now since it has been six weeks since the last one and they want to make sure that everything is still the same. They will also place some markers on my head after the MRI that will help with my brain mapping.
After meeting with Dr. Gutin I was sent for lab work, ekg and a chest xray at a building about 11 blocks away. So we had to jump on a jitney and travel to the other site. Once there a receptionist took some info and then asked if I preferred a semi private room that my insurance would cover or that I could request a private room that would cost "five thirty" extra a night. To which this hick girl replied "five dollars and thirty cents?" and she replied "five hundred and thirty dollars "and then chuckled. (we are not in Kansas anymore!!) So I will be sharing a room !!!
So surgery is still scheduled for April 28th. I will probably need to be at the hospital at 6am. Dr. Gutin said that he will start and that Dr. Selesnick will assist and then finish and close. They expect only one to two days in ICU and a few more on the regular unit. They will let me leave as soon as I can ambulate, eat, pee and of course breath.

It took till almost 6pm for all of the pre-op stuff to be completed and for us to get out of the city due to traffic.

Thought this was Interesting...

2009-04-19T22:30:00.000-04:00

This is a clip of one of the surgical suites at Sloan Kettering....Dr. Gutin does alot of talking in this: ** THE PATIENT IN THIS CLIP HAS CANCER---MINE IS BENIGN (NON CANCEROUS)
http://edition.cnn.com/video/#/video/international/2009/02/04/vital.signs.jan.bk.a.cnn

We are on our way

2009-04-19T13:44:00.001-04:00

We are on our way to nyc again to meet the new surgeon tomorrow and to have all of the preop testing done. I hope the traffic gods are good to us

DOH

2009-04-16T19:56:00.001-04:00

OK now all of you who live in a small town may get what I am about to say :

I am not dying of an inoperable brain tumor-------I started this blog to try to stop the never ending rumors that people in small towns seem to feel the need to start. Maybe I would be more apt to believe them if I was not still working, shopping and going for walks with my daughter. But if any of you still feel the need to feel that sort of sympathy for me please feel free to send large cash donations to my house. Twentys and Fiftys will really let me know how bad you feel. We've been wanting that heater for the pool anyways and I know that some of you will not feel whole unless you have contributed!!!

On a more serious note I do feel pretty good. Once in a while I will get headaches that will last for hours on end but overall I do not feel too bad. I do have some ringing in my bad ear. I am still carrying the extra weight that should magically fall off when the tumor is removed. I no longer have double vision. Some of you have even seen me out driving in town. The hardest part of this is that I do not feel sick!!

WE HAVE LIFT OFF (well almost)

2009-04-15T11:14:00.000-04:00

So the insurance piece is now all pre-approved. So you would think that it would be smooth sailing from here...but NO today I woke up with cold/allergy symptoms. I really hope they go away by Monday since that is my pre-op day and If I am sick they may very well postpone again.

Hippoty Hoppity........

2009-04-12T21:36:00.000-04:00

Do I dare mention that after tomorrow that I have 2 weeks left until surgery and that we will be going back down this weekend for a pre-op with the new surgeon. It kind of feels like I am having De je vu.

Today I made Easter dinner. I wanted something diffrent so I went onto the food network and found recipes for Red white and bleu potatoes and baby carrots with ginger butter. That along with the double candied ham made quite a feast. And don't forget the white cake with pastel sprinkels. Yummmmmm, Did I mention that I was going on a diet after the surgery!!

Someone hijacked my blog............

2009-04-09T22:39:00.000-04:00

Or so I thought..somehow the blog I had started for my daughter about a year go got mixed into this blog and every time I tried to sign in it would give me her blog......I almost had a heart attack.....all those house comparison pics would have gone to waste!!

New Plan

2009-04-07T16:42:00.001-04:00

OK so here it is..........I went to my regular medical provider today for the remainder of my pre-op stuff. They actually suggested that I call them when I have a new surgery date since my insurance will not cover two physicals.

I came home and received a call from Dr. Gutin's office. I am going to have to go down again for another pre-op appointment on the 20th. The nurse mentioned something about pre-op labwork,x-ray and EKG to be done that day and I let them know that I already completed them. The nurse then informed me that I would have to have them all redone again since they do not accept anyone else's. So only a few more days of the NYC traffic.

My surgery is now scheduled for the 28th of April!

Someone send me some luck please!!

2009-04-07T10:02:00.000-04:00

Well the very prestigious Dr. Selesnick just called me himself to let me know that the very prestigious Dr. Stieg does not accept my insurance. Since Stieg is the lead on this whole thing that I would have to pay out of pocket for most of this. So I didn't get an actual number but I was guessing that I would have to pay on this for the rest of my life.

So the new plan is : Have to switch the surgery to Sloan Cancer Center (this is not cancer though) so my insurance will cover it. So this means that I cannot have surgery on the 14th and will have to wait to be scheduled for surgery again with another surgeon.

I am actually bummed that I have to wait again. Mentally I have been preparing myself for this for over a month. And I really like Dr. Stieg-----the new surgeons name is Dr. Gutin.

2009-04-06T20:22:00.000-04:00

8 DAYS........I had my labwork and xray today and tomorrow I will have my physical and EKG. I am getting closer and closer to this and I thank god that I am able to distract myself with work right now.

I know alot of you have asked for the address and room # and once I get one I will have my sister post it here. She is still going to update my blog after I am unable to do so.

The final countdown........(to surgery)

2009-04-05T22:51:00.000-04:00

OK in 9 short days I will be a fresh post-op from brain surgery. Hopefully I will be nicely medicated and sleeping comfortably.

I forgot to mention before that they may not be able to remove the whole tumor. Since it is quite large and because it is in an awkward spot they may have to leave parts so they do not do any severe nerve damage. So this will probably mean that I will still have to go through with radiation therapy or they said that after they cut off the blood supply to the area that it may stop growing on its own. So I am guessing that with my luck I will have to go through with radiation treatments. I will also have years of MRI's to ensure that it does not grow back.
OK as you can see I have started to obsess again. I cannot beleve that in a little over a week I will be under the knife.
http://www.youtube.com/watch?v=0ZkllM8znx4

Excuses

2009-04-04T21:01:00.000-04:00

I really can't believe the excuses I make up to shop. I just ordered a jogging suit so I can wear it home after the surgery and be comfortable. Who would have ever thought that having a brain tumor would be an excuse to buy clothing??!!

In a Nutshell.......

2009-04-03T20:53:00.000-04:00

Again we left NJ at 7:00am for a 10:00am appointment at Weill Cornell in NYC. What was suppose to take us one hour ended up taking 2 hours and 45 minutes because of traffic. We ended up there 15 minutes before the appointment and waited almost an hour in the waiting room. Dr Stieg came in and spent about 10 minutes going over the plan again....he will actually start the surgery and try to remove the tumor from the brain stem....he said that sometimes they come off easy and sometime they are pretty sticky. Once he is done with his part then Dr. Selesnick will do his part with removing the tumor from the auditory canal. All in all they are guessing that if everything goes perfect that the surgery will take minimum 6 hours.
Dr. Stieg was very upfront in telling me that I will be pretty miserable for the first few days. Because of the location of Mr. T I am going to wake to severe nausea and vomiting which will most likely continue through the first few days. I will have a catheter placed in my spine just in case the fluid builds up too much they will have quick access. So if everything goes as planned I will spend at least 2 days in Neuro ICU and then 3-5 days on the regular neuro unit. Of course any type of complication and the numbers will increase. They also gave the whole "things that could go wrong" speech again. Lets see meningitis, death, infection, death etc etc.
But they keep trying to convince me that its less than a 1% chance for any of those.
They are also pretty optimistic regarding long term effects. Since the only thing that I am experiencing now is the vision issues they are giving me a 95% chance that I will not end up with Bells Palsy or any other type of facial drooping or paralysis. The only thing that they are NOT guaranteeing is saving any part of my hearing in my right ear. Pretty much can rule that out.
They told me that I will wake up with staples behind my right ear. They also warned that I may have an incision on my abdomen because they may need to use my fatty tissue for a skin graft. I pretty much told the doctor that he could take as much fatty tissue as he wanted to and I would even be willing to donate some to other patients if needed. Hell----harvest the fat from my arse while your at it!!
Whats left: Well this week I need to get some lab work, EKG, and chest x-ray.

GET OUT!!!

2009-03-31T21:55:00.000-04:00

Is official....I am giving Mr. T (grape in my melon) the official two week notice tomorrow.

I am traveling again for two pre-op appointments on Thursday back in NYC. I am doing the jig that we don't run into any hurdles this time.

AN 101

2009-03-29T20:33:00.000-04:00

I have tried and tried but am unable to upload my actual MRI pics at this time. This one I found looks very similar. The white "mass" that is sort of shaped like a head of cauliflower is the tumor. The structure that its pushin on is the brainstem. The function of the brainstem is:

The brain stem plays a vital role in basic attention, arousal, and consciousness. All information to and from our body passes through the brain stem on the way to or from the brain. Like the frontal and temporal lobes, the brain stem is located in an area near bony protrusions making it vulnerable to damage during trauma.

Functions:
Breathing
Heart Rate
Swallowing
Reflexes to seeing and hearing (Startle Response).
Controls sweating, blood pressure, digestion, temperature (Autonomic Nervous System).
Affects level of alertness.
Ability to sleep.
Sense of balance (Vestibular Function).

Observed Problems:
Decreased vital capacity in breathing, important for speech.
Swallowing food and water (Dysphagia).
Difficulty with organization/perception of the environment.
Problems with balance and movement.
Dizziness and nausea (Vertigo).
Sleeping difficulties (Insomnia, sleep apnea).

Skinny here I come....

2009-03-25T21:14:00.000-04:00

So I was thinking.............They think that the tumor has been around for a while but since I didn't start having hearing problems till I got married I am guessing it starting to grow larger about 5 years ago. So 5 years ago I was a size 10. Some of the side effects of an acoustic neuroma is excessive tiredness. So if you are thinking what I am thinking....................this tumor must weigh about 100lbs in my head. So I am so expecting to be that much lighter after the surgery!!!! You all thought I was going to say that since I was so tired I couldnt exercise....thats the logical response but not the correct one! I am going to ask my specialists next week if I should go out and buy new clothes for my new body!!!! What do you think he will say to me???

Were not in Kansas anymore.....

2009-03-24T17:49:00.000-04:00

So my husband and I are looking into hotels by the hospital so he can be close by to me for the first few days. I guess one of the ways you know you were brought up in the "boondocks" is when you go into slight heart failure when you find out that its going to cost around three hundred dollars a night to stay in the city. We just went on vacation and spent alot less than that for our own Condo on a lake in Florida. That place even came with its own alligator.

Nothing

2009-03-23T20:47:00.001-04:00

I really don't have to much to say these days. I have been trying to not obsess too much over the ...well you know (whispers--"the Tumor"). I have been back to work since last Thursday. I have been getting rides from my wonderful co-workers and my wonderful dad. Besides the driving I think I am pretty much back to my normal routine. So yes, I just admitted that since I am not obsessing over the .....T-thing that my normal life is really too boring to blog about. I have been getting alot of questions regarding my hair and how much I am going to have to shave . I even had a friend offer to pre-shave it for me before the surgery. Can you imagine if I showed up for my pre-op appointment next Thursday looking like this .

Help needed

2009-03-21T09:24:00.000-04:00

So I looked up the neurologist that will be assisting Dr. Selesnick during the surgery. I think it took me over 15 minutes to read his biography. Check this out.

http://www.weillcornell.org/pstieg/

It really seems that everything is going at a snails pace now. If my vision would just go back to baseline I may be able to convince myself that I just made this whole thing up.

Just to clarify----the type of tumor that I have is 99% benign meaning that is is not cancerous.

Acoustic Neuromas
The acoustic (eighth cranial) nerve includes branches that mediate the sense of balance and head position (the vestibular nerve), as well as hearing (the cochlear nerve). Acoustic neuromas are benign tumors that arise from the vestibular portion of the acoustic nerve. Surrounding each nerve fiber are Schwann cells that form a substance called myelin that insulates nerves and facilitates electrical conduction. It is from Schwann cells in the vestibular nerve that an acoustic neuroma, also known as a vestibular schwannoma, arises. Schwannomas also may be referred to as neurilemomas, neurolemmomas, and peripheral fibroblastomas.
Acoustic neuromas occur at a rate of one per 100,000 people and make up eight percent of intracranial tumors.
Symptoms
Because of the location of acoustic neuromas, the initial symptoms of these tumors involve hearing and balance. ( I thought I was just fat and clumsy!!) Tinnitus (ringing in the ears--I only have once ina while), hearing loss(slow for about 5 years), disequilibrium, and vertigo are common and caused by compression of the eighth cranial nerve. As the tumor enlarges, it expands in the space of the cerebellopontine angle, a region near the brainstem, and the seventh cranial nerve, which controls the facial muscles. When a tumor is large enough to compress surrounding structures, it may cause headaches, facial numbness and/or weakness, double vision, nausea, vomiting, and hydrocephalus, a blockage in the flow of the cerebrospinal fluid that bathes the brain and spinal cord.

Normal

2009-03-19T20:01:00.000-04:00

Well I went back to work today. All in all I think it was a good day. I wasn't attacked by my stapler or any other object from my desk so I think things are looking up. I was called by the Neurologists office that will be assisting Dr. Selesnick. They also want me to do a pre-op with that office. So in a perfect world I could schedule these back to back and get them both done on the same day right? WRONG---at first the nurse was not very sympathetic of my geological location. I even contemplated turning the waterworks on but I think that well has dried up. It seems that the neurotologist does his pre-ops on Fridays and the Neurologist does his on Thursdays or Mondays. It tool some finagling but I ended up getting both of them on the same day.

Fun Filled Day

2009-03-18T15:11:00.000-04:00

So I send my daughter to daycare today thinking that I will get my note to go back to work. Well still waiting on the office to call or fax me. I have called 3 times now and even called the NYC office just to make it a race to see who would call me back first. I am betting on NYC !!

Today was full of excitement. I did a phone conference for work (shhh don't tell anyone). Then I got out of bed, ate a muffin with a cup of coffee. I then checked my e-mail, facebook, blog and then made another cup of coffee. (panting now)

Then I did something crazy....I showered. After that I got dressed (cause it would have been funny to do that first) and here I am again on the computer.

After all that exertion I think I need to lay down. I hope tomorrow I can learn to take it easy and not stress out so much!!!!

I have been debating on whether or not to try driving. My vision either has either improved a bit or I am use to it now. I think I would be fine driving around town..maybe....my husband doesn't think so!! Why can this guy do it and not me??? http://news.bbc.co.uk/2/hi/uk_news/england/west_midlands/5313370.stm

NO

2009-03-17T15:49:00.001-04:00

I have spent a gorgeous day with my 21 month old today. She is so in that "terrible two" stage. The answer to everything now is "NO".

Wouldn't it be a hoot if you could answer everything like a 21 month old:

Dr: Well you have a brain Tumor
Me: No
Dr: yes you do
Me: No
Dr: You are going to need surgery for that
Me: No
Dr: Don't you believe me
Me: No

I am waiting for the MD office to call me back so I can get a note to go back to work. Yes you heard me....since I have a few weeks their really isn't any reason to torture myself (and my family) anymore by staying home. My dad has agreed to chauffeur me around and work has agreed to have me back (I did hear a rumor that they already had plans to convert my office into a gym)

So I may be seeing some of you real soon!!!!

Dates

2009-03-16T17:51:00.001-04:00

So I did receive a call back on a Monday----hallelujah! My surgery date is set for April 14th, my pre-op is on April 3rd and follow up on April 21st all days where I must be back down in NYC. I am excited m nervous and anxious all at the same time!!!

Just another Manic Monday.......

2009-03-16T12:11:00.000-04:00

Its Monday morning and do you know where your MD is??? I don't!!! The last I heard is that he was reviewing his very busy schedule to see where he could fit me in. I am sure with the team he proposed to me that would need to be part of my care that it's not an easy task. I will try and be patient today but now have been grounded to my house until they call back. And here is a little humor for this beautiful Monday Morning:

Things you don't want to hear during surgery:

Better save that. We'll need it for the autopsy.

Someone call the janitor - we're going to need a mop.

"Accept this sacrifice, O Great Lord of Darkness!"

Spot! Spot! Come back with that! Bad Dog!

Wait a minute, if this is his spleen, then what's that?

Hand me that...uh...that...uh.....thingie.

Oh no! I just lost my Rolex.

Oops! Hey, has anyone ever survived 500ml of this stuff before?

Damn, there go the lights again...

"You know, there's big money in kidneys. Heck, the guy's got two of them."

Everybody stand back! I lost my contact lens!

Could you stop that thing from beating; it's throwing my concentration off.
What do you mean she wasn't in for a sex change...!

Anyone see where I left that scalpel?

This patient has already had some kids, am I correct?

Nurse, did this patient sign the organ donor card?

Don't worry; I think it's sharp enough.

What do you mean "You want a divorce"!

She's gonna blow! Everyone take cover!!!

FIRE! FIRE! Everyone get out of here!

Home Sweet Home

2009-03-15T20:22:00.000-04:00

OK so I am home again. Anticipating another round about of phone calls tomorrow to try and schedule all of my pre-admission bloodwork, physicals etc and to actually get my appointment date set. My vision is iffy at most---I do see better in the evening or when I first get up...its almost unbearable to be mobile in the bright sun.

This is what I see

On another note I was wondering whoever came up with the concept of the easy button. What I wouldn't give for one that really worked right now:

My Day

2009-03-14T00:00:00.000-04:00

Well we left NJ around 1:00pm for a 3:30 appointment in NYC which anyone who has ever driven in NYC knows that traffic can be a nightmare. We were making really good time until the inevitable happened. "ACCIDENT ON THE GW BRIDGE ALL LANES CLOSED USED LOWER LEVEL". Which in itself sounded easy enough until you are actually on the expressway heading for the upper level and their are concrete dividers between you and the lower level traffic. We were at a standstill for over an hour. I though that this would be just my luck to be so close and miss the appointment. Finally around 3:15pm when we still hadn't moved an inch I was getting nervous. I called the office to explain and they paged the surgeon since I was his last appointment of the day. And do you know what that big city surgeon said...."I am not canceling the appointment so tell her to just get her as soon as she can". I though to myself,"awwww what a nice guy" and then true panic set in when I started to let that darn BIG nurse Gene out again and thought "There really must be something wrong with me for him to want to wait.

We ended up getting there about 15minutes late and after about a half hour I saw the surgeon. (FYI no cane and he wasn't popping any pills). He explained to me the whole acoustic neuroma diagnosis and treatments. He showed me a slide show and even reviewed my MRI films with me. I really think I could have passed a written exam for medical school at this time if it only included AN's.

SO I guess you are all wondering what he said.............................................well I sort of guessed it ---------He called my alien "medium size" but then went on to say that the way it is sqashing my brainstem right now that their is no way we can just leave it. So having said that their isn't even a chance for the gamma knife therapy or radiation as these big city folk seem to think that too much radiation on the brain stem is a bad thing. I will have skull based surgery in the near future where they will have to remove a piece of my skull behind the right ear. (I will have to shave my hair too..I think I will aim for something like the picture but maybe with the Adk Arc symbol for Les) The surgery will be anywhere from 6-8-10 hours with himself, a neurosurgeon and another kinestiology specialist all involved. Prob a week in the hospital and a few more days at the In- laws before I will be released to come home. He is guessing about 6 weeks out of work but that really depends on allot of other factors. So there was my day in a nutshell........I will be comming home sunday because he did not give us an actual date and I love to travel so much (not).I think tomorrow I am going for a foot massage and maybe a little shopping depending on how good my eyes cooperate.

On the road again

2009-03-12T13:56:00.001-04:00

OK we are off.....I hope that by the time we cross the NY-NJ border that the tumor dissolves and that Dr. House thinks I am a quack for wasting his time........but just in case that does not happen I have my own supply of Xanax that another nice nurse gave me a script for. To all my Adirondack Arc followers I hope the nurses don't wreak too much havoc while I am out.

And congrats to Dom and Carla for bringing new Bambino's into the world!!

Me Me Me

2009-03-12T09:10:00.000-04:00

I want to thank anyone who is still awake and following my blog. Its nice to know that people really care.(or are incredible nosy...lol)

Well onto me again. I have never really been the type of person that was comfortable with having things all about me or having to be taken care of. This really has been quite a humbling experience so far. I cannot drive (well I can but trying to figure out which of the two roads I see is the actual one - can be confusing), read or even watch TV that well. I can manage the computer ,at times, but the room has to be dark and I have to sit pretty close. (Don't tell Ann or she'll find stuff for me to do ) .

So I guess what I am trying to say is that I thank you all for all of your offers of help and general concern for me and my family. I do not know what the next few days is going to bring but I know that whatever happens that I have a great group of peeps standing behind me. (just like that Verizon commercial....Thanks Cass)

Question and Answers

2009-03-11T20:30:00.000-04:00

OK now its time for the best part of the show the Q and A part

Questions #1 What if you have more cushion and cannot fit into the closed MRI?

Answer: They do have Open MRI services in Plattsburgh which can be used for both "more cushioned" people and people who do not feel comfortable in confined coffin-like places

Question #2 How did you ever sit in that tube without moving a muscle for over an hour and a half?

Answer: Please see post below in reference to "Very nice nurse and Xanax"

hmmmmmmmmm

2009-03-11T13:44:00.000-04:00

Well I can honestly say that I can check a few more things off of my list of "health concerns" I have had. Today I woke up with shortness of breath and my stomach was in knots. I have never experienced a true panic attack but I think I was on the verge.

I got to the hospital promptly at 9am and they started another IV to push the contrast into me. The MRI suite I can honestly say was not built for, how shall I put this, people with a little more cushion. I was asked from a very nice nurse if I was OK with small places and then blurted out that I may start freaking out at any moment. Then the very nice nurse gave this very anxious nurse allot of Xanax. So If anything sounds strange in this post I am a bit sedated still.

I was originally told that the MRI would last about 1/2 hour or so but later found out that they ordered more tests and I was actually going to be inside this "coffin tube" for an hour and a half at least. Once again thanks nice nurse for the xanax.

After this I quickly went to my appointment for my audio test. I definitely have right sided hearing loss with neuro defects as seen with most people with this type of brain tumor. He did say that if I don't lost any more hearing this could be easily corrected with a hearing aid in the future.

FYI

2009-03-10T23:59:00.000-04:00

For those of you that are a little challenged with all this blog stuff......if you would like to leave a note just click on the "comment" word under a posting...a page will come up and it will ask you to log in....then post away

Rolling Rolling Rolling

2009-03-10T16:53:00.001-04:00

OK so I guess all of my persistance paid off. I have an appointment in NYC on Friday with Dr. House. Ok maybe they just look alike but I swear that if comes out of the office with a cane I will bolt.

Everything is falling into place now. First I will go to have an MRI in the morning. Then right after I will go and visit Mr. Audiologist for a study to prove I am not lying about my hearing loss. Thursday afternoon we will be leaving for New jersy and Yes (I want applause here) I have an appointment with a very prestigous surgeon Dr. Selesnick http://www.weillcornell.org/physician/samuelselesnick/index.html
Boy I was so anxious to get the ball rolling and now I am so anxious that everything is going so fast. My sister will continue to update my blog when I am unable. She's not as cute but just as Sarcstic. (lol)

This one deserves its own post

2009-03-10T14:19:00.000-04:00

So I got in and spoke very openly with my medical provider today. She stresses that this needs to be taken care of fairly quickly to avoid long term affects . I guess the game plan maybe going to Columbia Presbyterian in NYC. I am now waiting again to see if they accept me and when I will make the trip. I hope I don't have to wait long!!
On another note I would love to hear from everyone who is reading this and hasn't fallen asleep yet!! Please feel free to leave lots of comments as It would be a great way to pass time and I seem to have alot of that now!!

Tuesday Part I

2009-03-10T09:43:00.000-04:00

And yes just as the title says I am sure their will be many parts to today. The First part is when I woke up this morning and called the doctors office again. You know the one that didn't even call me back yesterday. Well the very nice receptionist who remembered me from yesterday could not give me a straight answer if she thought that coming into the office would make a difference or not. I very politely asked her to make me an appointment and she stated she was sending another note back to the provider and was going to ask her whether I needed to be seen. Then stated if I don't hear back by 4pm then I should call again. This is turning out to be Mission Impossible. How many phone calls do you think it will take to get them to refer me to a neuro surgeon??????

PART II
I have been ackknowleged!!!!! The office just called back and apologized for blowing me off yesterday and they want to see me at 1:00pm today (thats 4:00 in Doctor hours in case you were wondering). I guess they are researching a place that specializes in this procedure and Burlington is not that. I will update everyone after the appt today.

Fu@&$% Monday's

2009-03-09T16:22:00.000-04:00

I guess I know why I hate Mondays. Not only is it the first day of the work week but its also the day that NO ONE WORKS.
I got up with some optimism this morning. I called the neurologist's office just as I was instructed to do. I was met by a very stern receptionist who even after hearing my whole story regarding "Friday" still had the nerve to tell me "Ma'am I don't know what you want but we cant fit you in". I think at this point if I could have jumped through the phone I would have. I know that she has no idea what kind of impact the recent news of having been diagnosed with a brain tumor but man a little compassion would have been nice. I guess at this point I felt I wasn't getting anywhere with politeness so I did the next thing that came to me.......................I know most of you that know me would think this would be to turn into "super bitch" mode but actually the waterworks started. I could tell at this point it was making even a small dent in the heart of the "Ice receptionist" so I thought I would throw in a few sniffles and sighs. She then says "hold on". She actually went and spoke to the doctor and at least referred me back to my regular doctors office for a referral to Fletcher Allan.
I immediately called my primary MD office and now being almost 5pm have still not received a phone call back. Oh yes I did get a call from a nice nurse who swears she left a note on the providers desk and yes I have even called back once just to make sure that they didn't forget about me. Here I am now...NO REFERRAL, NOT EVEN A FREEGIN CALL BACK.............I am hoping that in my past and I know certainly in my future career in the health field I will remember these past few days. I would never imagine leaving a patient "hanging like this". All people ask for is some acknowledgment that what they feel is important. I will continue my mission tomorrow I guess!!

The Weekend

2009-03-09T16:17:00.000-04:00

So I made it through the weekend with only about 30-40 meltdowns. I still cannot see unless I close one eye and then I end up with headaches caused by the strains. I am so anxious to find a doctor to treat me so I can move on with my life. I have never been a good relaxer type person. So I look forward to Monday a.m. so I can call and maybe get some answers.

Friday, March 6th

2009-03-09T15:57:00.000-04:00

What was to start out as a normal day has ended up being the day that will burn a hole into my memory for the rest of my life. It started out simple enough with being awakened at 6:15am by a toddler who had scaled her crib for the first time and was now standing at my head asking "momma I want juice". Half asleep I did get up and get juice and then turned on whatever cartoons I could find.

I decided today instead of rushing off to work as I usually do I would take it easy and sleep in for a little while. I woke up at 9:30am and immediately came out to the living room. To my surprise there seemed to be extra furnishings. Everything in the room appeared to have a twin. I can tell you you that if you have ever experienced a sudden change in your vision you might know what I am talking about. But after having 34 years of better than perfect vision, this was enough to send me into a panic attack.

After speaking to my husband (the optimist) I decided that my first course of action would be to get into see my optometrist to rule out any eye problems. After this turned up clean I was then advised to continue my journey to the Emergency room for an evaluation.

After spending a very long time at the SLER I was then taken to have a CT scan. Now I had one about 15 years ago for some sinus trouble and little did I know that they now take about 5 minutes to complete as compared to the 30 plus minutes before. As always I was expecting a "we found nothing" and to go home for some much needed rest. The course of events from this point on still haunt me and I expect at any moment to wake up from this awful night-mare.

When the CT tech sat in her little room and spoke on the phone first before coming to get me I had a feeling that I was not going to be sent home without a clue to what was going on. She very quickly asked me to sign a consent for contrast and then mentioned something about follow up MRI. At this point even though my years of working in the medical field prepared me I still could not help but blurting out "what the heck did you find". She was very pleasant and reminded me that the MD would have to disclose that. I guess I started feeling sure panic at this time and asked to be brought back to my room.

Acoustic Neuroma is what they are calling this grape sized alien that I have in my head that his causing me so much havoc at this time. I can't tell you that no matter how many times someone tells you that it is usually benign and that they can do surgery to fix it that you are just ultimately horrified that you have a TUMOR in your head.

This 'aint easy

Its beena long time

2010

Helloooooooo

Guess whats gonna happen in 9 months???

SOOOOOOOO

Whats new?

How are you?

Funny

Its Final

Being Patient

he called

Waiting

My Day

Here I go again......

NYC here I come again.......

PAIN

whats your excuse?

There really is no place like home........

Home

From Patty's FB Posting....via Phone

Not sure yet....

Ouch..I woke up today with

Saturday

Its our week!!!

More

Today

My most annoying list!!!

the next 48.......

FWD:

FWD:

Its a great day in the universe...I got to shower!!!

Day Five (sorry so late)

Day Four

Day Three

The Day After

Praise the Lord!!

Update on Patty

Ok its four am and

Give me strength....

We here

We are off....This time its

Where has my mind gone?

and...

Oh the fun

Thought this was Interesting...

We are on our way

DOH

WE HAVE LIFT OFF (well almost)

Hippoty Hoppity........

Someone hijacked my blog............

New Plan

Someone send me some luck please!!

The final countdown........(to surgery)

Excuses

In a Nutshell.......

GET OUT!!!

AN 101

Skinny here I come....

Were not in Kansas anymore.....

Nothing

Help needed

Normal

Fun Filled Day

NO

Dates

Just another Manic Monday.......

Home Sweet Home

My Day

On the road again

Me Me Me

Question and Answers

hmmmmmmmmm

FYI

Rolling Rolling Rolling

This one deserves its own post

Tuesday Part I

Fu@&$% Monday's

The Weekend

Friday, March 6th