Friday, May 31, 2013

Spinal Tap To Day. Yikes!


Today is the day I head to UC For the first step in discovering, why I have extra fluid around my brain. They are going to drain this fluid with a spinal tap. Sounds scary Doesn't it ?
Being scared is something I'm not !I've always been strong and just plow right ahead with life. It has not always been easy but I can do it. I have been on my own since I was 15 years old . My family had some hard times and we all did what ever we had to do to survive! My brothers and I have lived our lives well and all of us have always reached out to help others, we are a strong family. 
I will let you know how this goes today! Should be interesting getting from the hospital to back. Home to my bed. I have to be flat on my back for 24 hours! Those of you that know me. Know I have a lot of energy - I think this might be an impossible task. However the though of Excruciating head pain encourages me to "just do it".
By Monday I should be clear headed and can help my great husband Peter as we prepare to sell our great cozy house and move into our new 1898 house which is right smack dap in the middle of The Village of Main Strauss. Aka Covington Ky also know    As  the Mason  Dixion 
Line. We can walk right a cross the bridge and we are in Cincinnati. Downtown Cincinnati right at the stadium right where the ohio side  has fun, thanks for all the restaurants and all the good things there.
Our little Village has its own fab  pubs and things to do. There is always music and lots of friendly people! A great place to retire. Very historical  with old German heritage 
 Peter and I are thrilled. 
I will up date everyone later today. XO




Thursday, May 23, 2013

Scrambled brain relief is on its way

Good morning world I now have scheduled the appointment. time for the drainage of all that extra fluid I happen to have around my brain it will be next Friday at 1 o'clock at University of  Ciincinnati Hospital. This should bring aDiagnoses  for easy treatment of my scrambled brain. Edema is retention of water and I think that's exactly obviously what I Have. I have gained some weight which is  extremely unusual for me I am naturally thin and I'm   132 pounds , now I know that doesn't sound like  a lot of weight but for me it is my normal weight is around 119 -121.. This is not fun because I cannot fit into many of my summer clothes I feel like I look like I'm pregnant ha ha . I really Just look like a skinny old lady with a big pot belly. I really did not expect to be looney at thiis point in my life , but a lot of pressure on your brain makes you act a bit weird.pete
   And I are looking forward to moving to the big city of Covington Kentucky in the main Straus area where everybody has fun you can walk to restaurants and shops and bars and even to Cincinnati
You can hang out and talk to people you can do whatever you want my great niece Carly is even working part-time in one of our favorite hangouts .
Sorry For all the typing errors and punctuation I'm using  the microphone because my fingers just can't get the typing job done it's too hard to correct everything so here you go figure it out. The
Micro phone doesn't even understand me!I  Oh well I.
 still feel better than I have felt in years XO

Monday, May 20, 2013

Good News and Some Concerned

May 20, 2013

Good News and some concerned News

We  spent last weekend in Nashville at a wedding of Chris and Toni Deamon. It was fabulous  to  have some fun time with our Tennessee family.
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On our way home we stopped at Tootsies Bar where Peter and I met 13 years ago, we celebrated our 12 anniversary. We had a great time and headed home very happy.
 

Monday morning Peter and I set off to UC  ( University Hospital of Cincinnati) for my brain and brain stem MRI.
We got out of the car Peter and I disagreed on how to get to the correct department. I got there first:) I asked for directions and got to walk through the old tunnels of the hospital. I saw all kinds of things like in  a horror movie where they put you in the Looney bin.. Peter finally found me!
Off  I went for these scans. I laid on  the scan table actually it was a brand new piece of equipment. A good thing. So in order to do this they had to start an IV and test my blood . No problem. At this point I am strapped down - I have ear plug and something like ear muffs over my ears and a mask of some sort . I could not move , I am certain I had the same mask on that they used on Hannibal Lector.
I could not move  - there was even a bar across my eyes.!



So they started the test  filled my veins with that magic potion that makes you glow. They pushed me inside the tube  and started with all these different  beeping sound. About half way through this hour procedure   they stopped. I was still in lock down. MY VEIN HAD MOVED.  They could not get my blood to flow.. I suggested they us a smaller needle.  Eventually they did use a smaller needle and we proceed and finished the test.

Three days went by and  Dr. Curry called me  (red flag time) The good news no sign of a stroke or cancer:) The not so good news is I have large mass of fluid around my brain, Did you know that there is some fluid always around our brains and as we age this fluid increases. My fluid  is as much as a woman over 85 should have.. YIKEES I did not like hearing this. They will have to do what they call a needle lumbar puncture to drain this. ( it use to be called a spinal tap) This should take place within a week.

Now, we know the reason  I am shaking , loosing my balance, falling and taking like I have had a stroke. This fluid is putting pressure on my brain. 

Dr. Curry just called me (did I tell you he looks like Peter Frampton?) The 50 year old Peter.
He went over what is happening and to tell me he  has an appointment tonight  with Dr. Bandari ( my other oncologist )  to discuss his findings.. I asked him if this is life threating he said "no".  There is also a medication to control the pressure if needed. This should be a piece of cake, compared to everything I went through in 2012.

 I feel great I have so much energy, other then the shaking which  effects with my typing being  horrid. I am blessed with lots of great energy. So what if my brain is scrambled - it will be fixed.

The girls and I are going to the beach  the end of July  to celebrate my Birthday and to say good bye to all this crap. Than we will go to the beach again for our annual labor day  vacation.
.Tom and Clyde  we hope you will be able to join us.
 xoxo thanks for reading my blog, thanks for the continued support, I love all of you

No one saves us but ourselves,
 No one can and no one may,
We ourselves must walk the path.
--- BUDDHA



Thursday, May 2, 2013

You got my attention!

April 29.2013

Today I went  to see my family Dr. - only because she told if I did not come in she would not refill my prescriptions. We all know how that goes,. Peter went with me and I had a list of two items to ask her about.

1. Why do my hands shake all the time -( I have assumed it is because of all the hell my body has been through)

2. That I thought I was having some rapid heart beats and tightness  in my chest ( I am not sure if that is spelled correctly)

She questioned me a bit than started looking at my eyes ,ears and throat. After the awww thing she stopped. She stated your tongue is even shaking, your whole body is shaking. She wanted to know how was I able to sleep at night! LOL Well, I did not know my body was shaking and I take drugs to sleep!  So what is wrong?  Not sure- likely the chemo. I have all the symptoms of  Parkinson disease, except I am not stiff. So she does not think that Parkinson's is the problem. I am certain that I do not have Parkinson's.   I am also having some trouble with my speech :(.

My heart sounded alright, she ran an EKG , which only takes 30 seconds and transfers immediately to my chart. Ok- unfortunately it was not alright.  This part did not surprise me. due to the radiation and Chemo, I knew it was possible.
 However I am an unlikely candidate for heart issues. I never smoked, I eat healthy, I try to exercise, I am 5'5" and 126 pounds.

 So within ten minutes I had an appointment for a stress test - with some nuclear dye  so they can look at all my heart and arteries. (DID YOU KNOW -95% of woman who die of  a heart attack have harding of the arteries, that are undiagnosed ) This was one of my , you got my attention moments!

In a very short period of time I find I have some type of  neurological problem and possibly heart disease. This can not be, I feel better than I have years.

So I have had the stress test, it was at 7:45 am with no coffee. I never am up that early, ever  let alone up and  running on a tread mill. OMG. I have an appointment with a Dr. Curry at the University of Cincinnati. He is a Neuroscience/oncology specialtist. This is scheduled  for May 8.

I feel good, I think this Dr. Curry  will help me as I take this  side journey. Believe me this will not get me down or make me fragile. I will be at Christopher  and  Toni's wedding on the 11th, at The Wild Turkey Ranch in Lebanon, Tennessee.

ucneuroscience.com/blog/dr-richard-curry-is-catalyst-for-new-neuro-o...
Sep 21, 2012 ... In his new clinics, Dr. Richard Curry, above, is helping patients who suffer ... 234 Goodman Street Cincinnati, OH 45219 | (866) 941-UCNI (8264) ... patients in these clinics at the Barrett Center at UC Health University Hospital.


http://ucneuroscience.com/blog/dr-richard-curry-is-catalyst-for-new-neuro-oncology-clinics/

Thank you for reading my blog:)  P.S. I feel great!