Wednesday, August 27, 2008

It Is What It Is

The time has come for my bi-annual MRIs. Every 6 months since I was a little girl I have gone in and had full MRI's of my entire spine and brain. We do this to track my tumors. I want to explain exactly where my progression is with this disease:

Tumors: I can tell you that currently I have about 5 brain tumors, all of which have been radiated at different times using Gamma Knife. All of which so far have not grown since being treated. 3 years ago I underwent a massive spinal surgery in which my surgeon removed so many tumors going down my entire spine they couldn't count. Some were compressing the spinal cord as much as 80%. There was bone removed and muscles cut, it obviously is something that will always cause me pain. I refuse to take pain relievers so I just "suck it up" as my husband would say. I want to be sure people understand that having your entire spine cleaned out in one surgery is not very typical at all. The neurologist went in to remove one area, with the plan of going back in after I had recuperated. However with modern technology, during surgery a surgeon has equipment which tells them if the spine is still stable. My spine stayed stable, so he kept going. Imagine my shock when I woke up with a wicked scar going down my entire spine! Now it has been 3 years and several tumors have grown back, which is what they do. That is the problem with NF2, you keep fighting, and it fights back. I also have several random small tumors in my lumbar spine. I was recently diagnosed with ovarian cysts and my neurologist's nurse has now told me that may be NF2 related as well.

Loss of function: Obviously, I am completely deaf. I cannot hear at all, and hearing aids do not help because there is no sound to amplify. My hearing nerves are completely severed. Near the hearing nerve is the vestibular nerve which controls your balance. I have very bad balance, I cannot stand on one foot let alone walk a straight line. This loss of function is what contributed to me almost drowning at Raging Waters! My entire left side of my body is weak. I can't use my left hand for any small motor function, and cannot open or grasp anything tightly with it. I have double vision which has gotten better after having had the tumor behind my ocular nerve treated with Gamma Knife, but when I am tired everything splits into two!

So now you are all caught up! I have my MRI's this month and will report back here. I have been taking Propolis for a full year now and hope I have had no growth. If I have I will probably continue the propolis for 6 more months to give it more time. There was a full month I did not take the propolis for lengthy reasons I wont go into. I am nervous to find out the truth about my ovarian "cysts" and am hoping I have not had any of my tumors grow freakishly large.

It seems so cut and dry reading it typed onto a plain white screen. As I absorb the reality of the situation I feel oddly disconnected from the future. Mostly I think, I will beat this! I will run, fight, and try anything to stop the progression of this disease for myself and my son! Then there is a tiny but vicious voice deeper in my mind that reminds me that is what my Mom used to say, and frightens me with possible worst-case scenarios. I try to refocus my mind on the positive, I am not a hippie who thinks that will actually alter reality, but what would be the point of living in fear? Regardless of how my story ends, do I want my character to be crippled by fear, or fearless?


Michelle R. said...

Girl I hope everything goes ok.

Ashley just started her ASL class so I'm gonna have her start teaching me what she learns.

RILEY said...


Sheila said...

I hope all your tests come back excellent and that you have no new tumors!!! If you need anything please LMK!!!

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