Wednesday, December 03, 2008

Brain Tumor Survivors and our Caretakers Taking a Time Out

Pictured to the right: Rhianon and I "NF2 babes"

Pictured to the left: Karen and Sam Stueland, Harley and I, Rhianon England

Oops! Back when I tried to upload a photo for this post, I had a problem with my computer locking up. This was supposed to be a draft until I could fix it and I did not realize it posted on my blog.

Last month was an extremely busy month for us and we even had a snowstorm and a foot of snow at the house during Christmas! With the New Year and things settling down now, I am back and my blog has not died out.

The picture (which I am finally now posting) is from our Halloween Party this year which we used to hold annually but have not for the past 3 years due to travel and of course I was recovering from surgery in 2007 and certainly did not have the energy to throw a party.

I was feeling so good within this last year and we were elated that I did not need to get surgery again this fall, that we felt like finally throwing our halloween party again to celebrate. It is always fun and we like to decorate the cabin really cool.

I am pictured here with 2 other brain tumor survivor friends and our caretakers (my husband Harley and Sam's wife and my good friend Karen who incidentally is a sign language teacher at the Hearing, Speech, and Deafness Center in Seattle).

Rhianon and I are afflicted with NF2 whereas Sam had something similar (Acoustic Neuroma). With Acoustic Neuroma, one also has a tumor on the auditory nerve. However, fortunately for Acoustic Neuroma patients, they only have one. Tumors in acoustic neuroma patients are easier to remove and treat unlike those of us with NF2 who have tumors on BOTH acoustic nerves as well as many other tumors in the brain and spine.

For Sam, his battle with his tumor was finished years ago when he had surgery to remove it. It has not and will not grow back. For Rhianon and I, only part of our tumors were removed and it is very common for them to grow again. In addition, there are other tumors that we will watch with our doctors throughout the rest of our lives and try to enjoy our lives as much as we can before surgery is needed again.

All of us have been left with many issues to deal with as the result of damage inflicted by the tumors. Our caretakers have a tremendous amount on their plate in dealing with our disorders. We are truely grateful for them! It is important for all of us once in awhile to have fun and take a break from all this brain tumor stuff and the things that go along with it.

This Saturday, I had the opportunity to meet Frank, Rhianon's caretaker, who goes to all her doctor visits and appointments with her.

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