Today is the first day in a number of days that I can SEE (!) And after sleeping for the past thirty-six out of forty hours, I do not feel as if I am circling the drain, for the very first time in weeks. I'll take it.
I wish I had some *great* news ... but I am still not sure WTF is up. The working concept right now is that there *may* be a problem with my brain ... causing all sorts of other stuff . I have a Monday morning date with the brain MRI device and some contrast dye (was due for next one in two months, but they are bumping me up now).
After doing increasingly scary things to me over the course of two weeks ("Has anyone stuck pins in her eyeballs yet? NO! Well then - let's TRY it! And get the BIG pins. We want her to FEEL it!"), the neurosurgeons are back at this novel theory:
Huh. So she cannot see, she cannot think, and she feels awful? Here's a crazy idea to consider: What if it is that TUMOR in her BRAIN causing BRAIN problems that are making the rest of her body weird? Could be tumor growing? Could be bleeding? Could be increased pressure from tumor? Could be inflammation? But - cognitive problems + transient visual disturbance + crushing exhaustion + known brain tumor = maybe we are on to something! Maybe it is her BRAIN.
Dude. Really. We are here again?
But that is Monday *(I have strict instructions to return if vision gets worse before then - cannot recall the last time I got a full weekend to just enjoy without that caveat. My marching orders on Friday afternoons are, "Rest, relax, and enjoy your weekend, but if you have ANY strange medical symptoms, call 911 and immediately get an ambulance back to Hopkins. OK - have fun! See ya Monday!")
Am doing my very best to enjoy. I am enjoying the sunshine - and my laptop! I can read! - in front of an open window, watching our pond ( I think I see a baby goose!) ... and soaking in Spring. From inside, of course; not really an outdoor gal, pollen makes me sneeze.
In one hour, I plan to have 1/20th of a beer while watching the NCAA game to celebrate with people that do not have on white coats and/or plans to to stick me with needles (or worse) in an attempt to "harvest" various types of "fluids." Unless the party gets really wild, in which case maybe I spoke too soon. We've all heard that urban legend about waking up minus one kidney in a scuzzy hotel bathtub full of ice.
I apologize - many times over - if I have not replied to any personal email messages or phone messages yet. I hope to get there soon.
I wish I had some *great* news ... but I am still not sure WTF is up. The working concept right now is that there *may* be a problem with my brain ... causing all sorts of other stuff . I have a Monday morning date with the brain MRI device and some contrast dye (was due for next one in two months, but they are bumping me up now).
After doing increasingly scary things to me over the course of two weeks ("Has anyone stuck pins in her eyeballs yet? NO! Well then - let's TRY it! And get the BIG pins. We want her to FEEL it!"), the neurosurgeons are back at this novel theory:
Huh. So she cannot see, she cannot think, and she feels awful? Here's a crazy idea to consider: What if it is that TUMOR in her BRAIN causing BRAIN problems that are making the rest of her body weird? Could be tumor growing? Could be bleeding? Could be increased pressure from tumor? Could be inflammation? But - cognitive problems + transient visual disturbance + crushing exhaustion + known brain tumor = maybe we are on to something! Maybe it is her BRAIN.
Dude. Really. We are here again?
But that is Monday *(I have strict instructions to return if vision gets worse before then - cannot recall the last time I got a full weekend to just enjoy without that caveat. My marching orders on Friday afternoons are, "Rest, relax, and enjoy your weekend, but if you have ANY strange medical symptoms, call 911 and immediately get an ambulance back to Hopkins. OK - have fun! See ya Monday!")
Am doing my very best to enjoy. I am enjoying the sunshine - and my laptop! I can read! - in front of an open window, watching our pond ( I think I see a baby goose!) ... and soaking in Spring. From inside, of course; not really an outdoor gal, pollen makes me sneeze.
In one hour, I plan to have 1/20th of a beer while watching the NCAA game to celebrate with people that do not have on white coats and/or plans to to stick me with needles (or worse) in an attempt to "harvest" various types of "fluids." Unless the party gets really wild, in which case maybe I spoke too soon. We've all heard that urban legend about waking up minus one kidney in a scuzzy hotel bathtub full of ice.
I apologize - many times over - if I have not replied to any personal email messages or phone messages yet. I hope to get there soon.
6 comments:
Hi there - Thinking of you and toasting you tonight. I hate the new facebook for not alerting me sooner that you are going through all this. Love, hugs, prayers and anything else I can give you. Wine? handbags? shoes? xoxo
C'mon, could it be the brain tumor causing all these strange symptoms? What a stunning hypothesis. Ya think?
Sheesh.
Perhaps you need new doctors, Jenny. I know, easier said than done, but really.
I also had a very respectable neurosurgeon telling me about 6 weeks ago that my awful symptoms could not be caused by that lovely subependymoma stuck smack dab in the middle of my ventricle. In his opinion, it must have been "something else," but of course he could not come up with what "else" that could have been. Thankfully, I went to another doc who told me that if we did not take the damn thing out, I could be dead in no time. He reminded me that the morality rate for these things is high enough for people who have *no symptoms.* If you are symptomatic, then it is a sign that things are already going awry. So we did take it out, and I'm here to say that it was an excellent decision. I don't understand what your docs are waiting for. This appears to be a no-brainer (no pun intended). Of course I don't know the details of your situation -- perhaps your tumor is in a place that makes it extremely difficult to access (mine was, btw) or there are other reasons to postpone surgery, so I don't want to push my lay opinion here too much (too late for that, I know). But methinks you may benefit from consulting other docs, still.
Anyway, I'm sending you good wishes and I'm glad to hear that you're feeling better -- and can see now. (Yay!)
Coming back, Jenny, to tell you how much I enjoy your writing (I've spent more time going through your older posts today). You are personable and hilarious in the midst of all this mayhem. It's admirable.
Jenny, please read this:
http://tinyurl.com/dyyjlq
Hey Jenny - I'm thinking of you, stay strong and enjoy this beautiful weather! Mason sends you a big rooaaarrr :)
Dena
BG - Yes, please send handbags, full of wine and shoes would be even better. Stat! My doctors have said that large amounts of Italian leather are very important for my recovery. And keep toasting (for me), that helps too. XO.
Dena - ROAR right back at M! I am calling this new thing "parasaurolophus syndrome" (I knew only you would find the humor in that).
Elizabeth - Thank you so much for the compliments! I have enjoyed reading your writings as well, you are very talented and have a way with words. I admire all that you have been through with respect to your own brain tumor and surgery, an experience not for the faint-of-heart. I am going to post a comment now on your blog (am new to this blog commenting thing) about my specific steps re: Dr. Lesniak and second opinions ... "talk" more on your site.
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