Monday, May 21, 2012

promise kept, a day late

I'm recovered from a wonderful, crazy, emotional, insanely packed week. Mostly. And, since it's NF Awareness Month, I'm going to finish the rest of my NF story. As far as it goes anyway.

After the surgery at 17, I had the remaining right side tumor zapped when I was 21. (Gamma Knife surgery- just Google it.) And then all was well- for awhile. I continued having yearly MRIs, first just my brain, then brain and spine. And new little teeny tiny tumors kept popping up on each one. But they weren't doing anything, so we didn't either. I finally finished college, got married, bought a house. Then, at 32, we heard the dreaded word "Everything looks stable.... but...". Those 3 little letters can so easily scare the SHIT out of you, when they are coming from your neurosurgeon. One tumor had actually been growing for years but so slowly that it wasn't noticeable from year to year. It's when they compared the very first scan to the last scan that it became obvious. As a team we once again decided that Gamma Knife was the way to go. So, I was zapped a second time. And hoped for another ten year break. Didn't get it. A year later the scans showed that the right side AN/VS we had original treated with GK ten plus years ago was growing again. (In fact, we discovered later there were actually two different types of tumor growing together plus a third tumor of yet another type growing close by. My brain is like a tumor garden.) My team, who I had been seeing since that first tumor 20 years before, suggested we try the GK on that area again. But, here's the thing, there are side affects from GK, and the risk of them increases each time you do it, especially in the same spot. Also, NF2 tumors are different from regular tumors. They don't always respond the same way and sometimes radiation can be pretty ineffective on them. Added to that, there was a tumor growing at the base of my skull, sort of right side middle that I could actually touch and feel. When I would lean my head back to say, look up at the sky, or lay on my stomach to watch tv, I would actually get light headed and go fuzzy from it. But when I brought it up to my team, while they admitted it had grown as well, they brushed off my concerns by saying there really wasn't anything they could do about it anyway.
So, let me get this straight? You don't want to listen to my concerns about which area is causing the most issues for me, your patient, or my thoughts on which treatment option would be best for me, again, the patient. Well, screw you! I'm outta here. This is my LIFE we are talking about and I want someone who cares about it as much as I do taking care of it. So, off to Chicago we went and met the most amazing doctors. To make a long story shorter, they agreed that yes, surgery was a better option; that yes, that tumor needed to come out ASAP and "oh, they said it couldn't be done? Well, they aren't us."
Surgery scheduled and completed, resulting in a 4 week hospital stay- that was not even remotely due to the fault of anyone involved, just the complexity of the procedure (it took 3 seperate surgeries to complete) and the fact that, apparently, I am allergic to penicillin. Ten months later I completed a 5K walk, with the help of my family and best friend. But, mostly, with the help of my sister who practically dragged me the last mile. :)
Another year (2010), another (almost as) complicated surgery. Only a 2 week stay this time instead of four. (We knew to steer clear of the penicillin this round.)
And then just 5 months after that, tumors still growing, we decided to try a new tactic. I started Avastin treatments (once again, Google is your friend, loyal reader- you must be loyal if you haven't given up on me yet) right after Christmas. Every 2 weeks I traveled from STL to CHI for my infusions. But at the first 3 month check up it was so worth it because I heard these words "Everything is stable- no growth!" Even my doctor was excited. I stayed on Avastin for a year and even now, 5 months after I stopped, I'm still showing "Stable".
This team saved my life, I have NO doubts about it. But they also saved my quality of life, and when you suffer from a disease* with no cure, that is just as important. So, though I doubt they will ever read this, thank you Dr. Bendok, Dr. Fishman and Dr. Raizer. You are truly heroes among men.

* For those who say NF2 is a disorder, not a disease, I offer up this definition of disease from


[dih-zeez] Show IPA noun, verb, dis·eased, dis·eas·ing.
a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavorable environmental factors; illness; sickness; ailment.

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