Knowing. Not knowing. Most of this has been the latter and that does drive us crazy. As a scientist I like to be able to NAME things. I want to KNOW what this is in my head so I can read about it and someone can tell me what the usual prognosis is, what can we expect, what should we be doing, is there a treatment? This may be as much the control freak in me as the scientist, truth be told. =)
Next week there may be more Knowing. I have the second MRI on Monday morning at 7 am. It will have been 4.5 weeks since the first MRI. What will it show? I'm nervous I'll admit. I really believe it will NOT show that this thing has gotten bigger because I think I would be having other/worsening symptoms and that is something I do know - things are not worse. But what would smaller/same mean? Or will it look different - less of a halo of inflammation? Will they see something else they missed the first time? Will we give it a name? Will there be some treatment plan besides waiting? So many questions. I don't meet with the Dr. until Wed so don't expect any knowing before then. I will let you know when I do.
There are some things I know this week:
1. All the blood tests came back negative (within normal limits). So we KNOW its nothing as 'simple' (aka nameable/treatable) as brainworms, strange southwestern fungi, lyme disease or some massive autoimmune attack. As I understand it MS is also ruled out now.
2. My endurance has improved A LOT. Even without a nap I can stay awake through an evening movie - even on days when I have appointments or have gone into work. I do miss my three nap minimum but i see this as progress.
3. My neuro doc Vaillant got me on the docket for the Austin tumor board. That is a group of
oncologists that meet regularly ( once a week? month?) to discuss
'interesting' and confusing ( i gathered) cases and I am the case for
next week! Kinda cool that all the smartest docs in Austin will be
thinking about my head. I wonder what they will come up with and if it will help us KNOW anything more concretely.
4. I am loved. I feel your prayers, good wishes and thoughts daily and know I am loved and cared for. What a powerful thing. Thank you.
Lisa - great to hear from you! Trust me the MRI next Monday will be positive results. Your actions speak loudly! Blessings- bernie.
ReplyDeleteLisa we continue to pray for you, so glad to know you are getting closer to knowing!
ReplyDeleteOOOO, The Austin Tumor Board! W0W! I imagine like "House" "Dr. McDreamy" and George Clooney (I know, it's been a long time since ER but when I think of great doctors my mind goes to him - HA!)all in a room and all focusing on YOU! Cool. Shrink it! - Becky G.
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