Tuesday, April 27, 2010

Good News!

This will be a very short post, but I am bursting with good news that I wanted to share. I just returned from NYU where I got my 2-year MRI followed by visit with Dr Golfinos (neurosurgeon). Dr G was able to pull up the film immediately and pronounced my head tumor free!! Since I was feeling more anxious than usual about this MRI, I am elated and relieved. Yay!!!

Saturday, April 17, 2010

Speaking About Acoustic Neuromas

Tomorrow I am off to Summit, NJ to attend the Acoustic Neuroma Assn of New Jersey's meeting. I am have also been asked to be on their patient panel to speak about facial and eye issues. So, today, I'm doing a little prep work and gathing together some props.

Props, you say? Yep, props. Since dry eye is such a problem for so many post treatment patients, I thought I'd bring along some samples of various things I've used: eye gel drops and ointment, eye cleanser, sleep mask lined with Glad Press 'n' Seal, onion goggles (pink), and Fit-over sunglasses. I plan to pop the pink onion goggles on at some point during the talk, just to get a laugh. Personally, I think the goggles are hilarious and I still giggle when I put them on. Should be fun, and hopefully people will find it useful.

Following the general meeting, I am also also attending my first board meeting as the newest member of the Board of Directors! Really looking forward to it.

Have had a fun week with my parents, who rolled into town on Monday in their motorhome. They're parked on our driveway extension and have been busy improving our property. So far, they've stained our deck (which REALLY needed it!), pruned a bunch of bushes, taken down the deer fencing, de-spidered the garage doors, and a host of other things that we never seem to get time to do. In return, I've been baking them bread and providing hot meals! Really fun having them here, and hope they hang around for awhile.

Good times...

Saturday, April 10, 2010

Ode To A Nap

Napping you ask? A blog about napping? Seriously? Okay well I have not taken leave of my senses and I really do have a couple of things to say about napping.

First, let me tell you that I am married to a man who has deep appreciation for the art form of napping. In fact, when we first started dating I used to be somewhat alarmed by Willie's ability to nap almost anywhere anytime. Most shocking of all, was when Willey wanted to nap when we were on vacation! As someone who is chronically in motion, I could not understand Willie's desire to nap. After all there are of things to do and places to see -- no time for napping.

Well, my whole perspective on napping changed just about two years ago. Turns out that one of the byproducts of brain surgery is fatigue -- numbing, impossible to ignore, not-to-be-denied fatigue! For the first couple of months following surgery I found myself napping at least once, sometimes twice a day. And these weren’t just quick little 20 minute naps either -- these were masterpiece naps that could easily consume several hours.

While I no longer have the need to nap multiple times a day, or for hours at a time, I do still find that I am occasionally overcome by fatigue and when that happens, the only solution is a nap! And I've learned to embrace my need to nap. Yes, I have become a lover of the nap. In fact, as I plan our upcoming trip to Ireland, I find myself trying to figure out when we will fit in our naps!

Yep, I’ve gone over to the dark side – I am officially and forever … a Napper!

Thursday, April 8, 2010

Lynn's Coming Home!!

Heard from Karen last night that all hurdles have been cleared and she will be bringing Lynn's ashes out here in a couple of weeks. The "party" is being planned for the afternoon of Friday, April 23. Lots of pictures, lots of chocolate and lemon goodies, maybe some Prosecco. And, lots of friends.

Tuesday, April 6, 2010


Spring has sprung here in NJ and the weather has been nearly perfect for the last week. Two years ago, I was in the final countdown to brain surgery. I wonder if I will ever view spring in quite the same way as I did BBT (Before Brain Tumor). I was laser focused on the surgery and had a detailed plan for every minute before and after surgery. I thought I had planned for every possible contingency. Based on all the orders I was barking out to everyone within range, I seemed to be in total command of the situation!

As usual, life has other plans for us. The only thing I really didn't plan for was facial complications. Not that I didn't know that facial involvement wasn't a possibility - more that I just didn't want to think about it. Which isn't really like me. Well, anyway, life tossed me a lemon in the form of facial paralyis and all of its ensueing challenges.

Happily, I have regained most (probably 75% give or take) movement back and I look pretty much like anyone else unless you know what you are looking for. Several months ago a blogged about my visit to Jackie Diels, neuromuscular facial therapist, extraordinairre. I posted some pictures which probably tell the story better than words. I am getting ready to post some more pictures, although I think right now the progress is more internal than perhaps external. The most profound change recently is that I am no longer slurring or lisping! Which means that I am improving control of my lips. wahoo! Also, and this is huge, the horrid tightness in my right cheek is almost gone!!! I do notice that it tightens up if I am tired, or towards the end of the day and I am still using moist heat on my face in the evening, but it is just so much better. It feels amazing not to have my face feel like it is clampled in a giant vise. Yay!! Now, if I could just make the freakin' chin dimple go away (yea, yea, I know - patience, Debbi.)

Everyone has gone to great lengths to tell me that my face will never be quite the same as it was BBT, but I am okay with that. Hell, I am a 54 year old woman - nothing looks quite the same as it used to!

Switching gears for a moment. Lynn's memorial "party" in Seattle was held on the 27th of March. There were about 50 people there to celebrate Lynn's life - lots of food (all the stuff she loved) and lots of singing (many of her old theatre chums were there, so lots of show tunes.) It sounds to me like it was just what Lynn would have wanted. As soon as all of the legal hurdles are cleared, her sister Karen will bring her ashes to NYC where there will be another celebration with all of her East Coast friends. It was her wish that there not be formal services, but instead "parties" to celebrate the good times. It's fitting.