Monday, January 4, 2010

Motivational Monday

I checked into the hotel. It felt weird to be there alone. I was given a warm chocolate chip cookie and actually walked to my room on the 11th floor of the Double Tree Hotel. The room was warm and inviting and there was a HUGE king side bed, just for me!

I am already feeling the aches of missing my family. They called me six times, but I feel so far away from them. It's almost as if my children give me life support. Without them, I feel empty and lost.

I still managed to enjoy the quiet bliss of the hotel room. :) But my mind kept drifting to what my family was doing back at home.

I laid back on the bed and tried to think of a time where I have been on my own, like I am right now. I laughed when I couldn't remember a single moment in my life, where I was completely, alone.

I guess I can call myself lucky....I have always been surrounded by people, children mostly. So I plan on soaking this all up, and enjoying it.

Today was filled with so much! Blood draws, chest xray, ekg, MRI and now I am exhausted! I met with Dr. Stewart and Sarah and we talked about the tumors in my hands and any new things that have crept up in the last 6 months.

I mentioned the headaches, and the hydrocephalus.

I also asked some of the questions that my friends on Facebook have asked....and here are SOME of the answers to those questions:

---MRI's ARE the best way to diagnose a Neurofibroma tumor growing inside the body. X Rays do not normally pick them up.

---There is no real proof that NFers have a higher likely hood of developing breast cancer. Dr Stewart said there was ONE article written on this topic. Chk out some info here .

---YES--there is a connection with NF and IBS (Irritable Bowl Syndrome) Chk out some info HERE I know I have issues with IBS and constipation. Ugh!

---Link between NF and Multiple Sclerosis? Yes. Click here

---Cancer and NF...The lifetime risk of cancer in a person with NF1 is estimated to be about 7%.
The best thing you can do is see your DR regularly and pay attention to your body and your tumors

Suggested screening for people with NF1 or at risk for NF1 includes:

  • Yearly examination by a doctor familiar with NF1

  • Yearly eye examinations, beginning in childhood (may become less frequent in adulthood)

  • Yearly blood pressure monitoring

  • Developmental assessments in childhood, as needed

  • Other evaluations (such as imaging scans, like CT scan or MRI), as needed for symptoms

Screening recommendations may change over time as new technologies are developed and more is learned about NF1. It is important to talk with your doctor about appropriate screening tests. In some areas, comprehensive NF1 clinics may be available to help with coordination of medical care.

I will get more answers to the questions ---be sure to chk back!

Tomorrow I will be admitted to NIH and get set for the surgery on Weds!

Thank you all for your wonderful support--God Bless


  1. Thanks for giving me another reason to not being able to sleep at night. Kidding, love you and thanks for the info, it's absolutely terrifying, but necessary to know.

  2. Thanks for all you are doing for everyone. God bless you for being our ambassadore!