Thursday, April 30, 2009

Day Three

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!

Wednesday, April 29, 2009

The Day After

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.

Tuesday, April 28, 2009

Praise the Lord!!

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.

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

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.


Ok its four am and

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

Monday, April 27, 2009

Give me strength....

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!!

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?

Sunday, April 26, 2009

We here

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

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

Saturday, April 25, 2009

Where has my mind gone?

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?

Wednesday, April 22, 2009


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!!!

Monday, April 20, 2009

Oh the fun

So the day started out with us arriving 2 hours early for my appointment (damn the 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.

Sunday, April 19, 2009

Thought this was Interesting...

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)

We are on our way

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

Thursday, April 16, 2009


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!!

Wednesday, April 15, 2009

WE HAVE LIFT OFF (well almost)

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.

Sunday, April 12, 2009

Hippoty Hoppity........

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!!

Thursday, April 9, 2009

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

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!!

Tuesday, April 7, 2009

New Plan

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!!

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.

Monday, April 6, 2009

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.

Sunday, April 5, 2009

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

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.

Saturday, April 4, 2009


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??!!

Friday, April 3, 2009

In a Nutshell.......

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.