Thursday, May 30, 2002 :::
 
Thinking Back
In thinking back to the time after I had the radiation in Rhode Island I remember that I was told I would feel normal. That there would be little change in my day to day function and I could just go back to whatever I wanted to do. Because no one warned me about the exhaustion, I thought that there was something wrong. I remember feeling like I absolutely could not pickup my foot one more time and put it in front of the other one. I slept a lot and felt guilty for it, after all, I was supposed to feel normal.

I was also on a small amount of steroids to prevent the tumor from swelling... which made it difficult to sleep at night... even though I was exhausted. It didn't take much to overwhelm and agitate me. I don't think it would have been so bad if I had been told that I might feel that way. I kept thinking...." I should be doing this or that".

People who choose surgery expect to feel terrible. They are prepared and they really do experience serious physical symptoms.... which is one of the reasons I did not choose surgery. If I could tell someone approaching Fractionated Gamma Knife procedure one thing.... it would be "give yourself a break... don't expect to jump right back into normal life. You look normal... but you have had trauma to your head, and it causes some subtle changes". It took me months to get over the exhaustion.... I have a large tumor... but I would think that it would be similar to some degree with smaller tumors as well.

The link for the Gamma Knife procedure I have included is for the single dose of radiation. I participated in a new procedure explained researched and presented by Victoria Meyerink and implimented by Dr Noren at Rhode Island Hospital about a year before. I am very grateful for the work they both did, as until that point I had few choices.


::: posted by Robbie Wigley at 10:10 PM

Sunday, May 26, 2002 :::
 
My Journey
I have been trying to figure out how to bring my story up to date... it is posted on the Acoustic Neuroma site. Two years ago I was diagnosed with this rather obscure nonmalignant brain tumor. If you really want to learn more about the condition, here is a fairly brief but good description.

This all comes to mind in a roundabout way because I have been avoiding going for walks with my husband. Not because I don't enjoy them, but because by the time I am finished I am exhausted. I have lost the balance nerve in my left ear..... which means I am constantly struggling to not look drunk. When I walk on uneven ground... it makes it worse. Griff and I have walked in the Carleton Arboretum for years and loved the little piece of woods in our small midwestern town, but lately I have resisted.

Awhile back Griff gave me a walking stick... (it was really a cane) and I was a little offended. We had talked before about walking sticks... but that was before I needed one. Well I suggested he exchange it for a real walking stick..... but the one he got was clunky and big and long and rather heavy. These canes and sticks were free, donated to the Senior Center here in Northfield by a very kind gentleman for anyone to take and use.... so I really couldn't complain too much.... but I could avoid using it.

Yesterday I found I could not gracefully avoid using the stick.... or going for a walk. To my amazement just the act of touching the stick to the ground gave me a point of stability. I was not exhausted and did not veer into Griff, even once. This was a revelation to me. It was worth putting away my pride and I will use it again. I may even find a really cool cane that folds up. As I walked I could look at the flowers and bugs and all the things I enjoyed before, because I was not focused on walking straight.

So this brings me to the point that I have been putting off the updating of my story on the AN site.... and I feel an obligation and need to share my discoveries (and there have been many) with others struggling with the results of their tumor.

So this begins a reflection on the last two years.... since the Gama Knife. I am not sure it will be in order.... but I will start!

::: posted by Robbie Wigley at 9:30 PM