Why "Why?"

5 years ago, when I was 30, my life changed forever. While most of my friends were having kids, my life took a vastly different direction: I had a tumor. A brain one.

Having discovered this surprising news a few months prior, we had to move swiftly. Suddenly "brain surgery" was the most important thing to check off of my "to do" list.

I was super-positive before my brain surgery, and even afterwards -- despite the fact that I'd also just lost half of my hearing abilities -- I maintained a healthy spirit and vowed to keep a super positive outlook on life.

Over the years, however, I slowly began for forget the new "lease on life" I'd promised myself. I began to fall into dark places seemingly out of nowhere. I struggled with these emotions in not knowing how to deal with them.

These times of struggle were when the overwhelming question, "Why?", began to surface a lot: "Why did this happen to me? Why did I deserve this? Seriously… why?!" These "Why's" caught me off-guard with their intensity. I had no idea how to answer the question sufficiently and "everything happens for a reason" was getting really old.

I feel that the most difficult question we can ever ask in life is "Why?".

If the answer is unfortunate, it can be questionably heartbreaking; if left unanswered, it becomes an inexplicable void that doesn't easily go away.

So, how do we deal with the "Why's" in life? This is what I've decided so far:

It's important to accept that the "Why's" are inevitable. Life takes a lot of twists and turns. They will either be pleasantly surprising or unexpectedly unfortunate.

The latter will challenge you, and I think the best you can do is be prepared for that challenge. Your ammo is knowing that the power of family, friends (and sometimes, complete strangers) will be the kryptonite you need to combat the "Why's" that you so desperately want to answer, but can't.

It's SO important that these "Why's" don't defeat us.

My support system was ridiculously empowering and I remain astounded in retrospect. I remember feeling overly humbled and subconsciously thinking, "WHY are they doing all of this for me?!" That's an answer that continues to become more clear the more I think about it.

I feel I recently figured out the answer to my biggest "Why." Maybe everything that happened to me happened so I could use my learnings to somehow help others; that maybe I'm doing whatever I was supposed to do with this Life I was given.

Feeling confident in that answer has uplifted me and healed me. It's since defeated my own controlling "Why?", which I've been seeking an answer to for a long time.

It's important that the "Why's" never control us because there'll be no answer until we can solve these answers on our own. Confront the "Why's" when you're ready; use your core principles to create the answer that finally speaks to you and your unfulfilled question(s) will become clearer.

It won't be easy, but it'll happen in due time… believe me.

And good luck to you. Life has a funny way of working things out if you let them.

Love, Amanda

Long-overdue Update

It's been over a year since I've updated this blog on my progress post-Acoustic Neuroma surgery, and an update is, frankly, well overdue.

I know a lot of you who're reading this have most likely been diagnosed with an AN and are pursuing your own research -- just as I did when I discovered my own 3" AN back in August of 2007. I started this blog for you guys, mainly 'cause I was underwhelmed with the facts garnered from my own online discoveries (not to mention completely freaked out by the surplus of negative outcomes that seemed to make their way online, thereby downplaying the many positives that were never shared).

Since I last posted over a year ago, my health has been as good as it's ever been. The main repercussion, for me (having underwent the Translabyrinthine approach), has been acclimating to the complete hearing loss on my right side. All things considered, I accepted it wholeheartedly from the very beginning and don't consider it a total handicap (or, "Mandycap, as I like to personally refer to it). While sometimes it can be a total pain in the you-know-what, I've learned to deal with it. I don't think most people notice, and those that are well-aware (my family and close friends and co-workers) kindly deal with the occasional repetition it requires. I honestly think it's more annoying for them than it is for me -- I consider that somewhat of a plus in a weird way.

Otherwise, I'm completely recovered and good as new. My scar has almost completely faded and I'll continue to get MRI's annually to ensure there's no regrowth in the other ear (which they say is rare -- but, hello, so was the first one!). Can't be too careful from here on out...

My story was published in the June 2008 edition of the Acoustic Neuroma Association's newsletter, Voyages, and the responses continue to be overwhelming. I've felt humbled to have been contacted by many former AN patients -- of all ages and from all over the country) who shared their own experiences and/or simply felt the need to reach out and say hello. I never realized to how broad an audience this undertaking would eventually connect me; not to mention how close one could feel to a total stranger as the result of a unique, shared experience.

I also continue to receive a lot of e-mails from those of you who've randomly discovered this blog and welcome you get in touch if you have any questions in regards to what you can expect throughout your own AN adventure. I'm more than happy to help you out as so many did for me. The anxiety of it all is definitely the worst part; I know what you're going through and am here to help.

To sum up: I want you to know that I turned out just fine, and you will too. Hang in there and keep a positive attitude -- it will be your best antidote.

Cheers,
Amanda

If you saw a chick awkwardly weeping on a treadmill at a San Francisco gym today...

...it was probably me. Before I elaborate, though, allow me to digress:

So, here we all are. It's the year 2008. While it may seem relatively easy to simply process this as the year following 2007, isn't it kind of bizarre to step back and think of it as a year that, to our former eighties-selves, was once considered totally space-age? I mean, it's merely 7 years prior to what we'd digested as the depiction of a future society in "Back to the Future II," and already a whole 9 years past Prince's ode to 1999. I guess my point is, wow -- you can never know just what to expect by the time another new year (or two, or five) arrives.

Okay, back to today's treadmill incident: So, recently, an mp3 was sent/dedicated to me from an old friend, which I listened to today while working out at the gym (which by the way, is the first time I've officially pushed myself, physically, since my surgery over two months ago). Without warning -- and despite only being able to hear the song through one earbud due to the surgery's resulting hearing loss on my right side, the song "Amazing" (yes, the one by Seal), immediately drew emotions out of me that I wasn't prepared for. In focusing on the lyrics, I was so overcome by a slew of unexpected emotions (perhaps provoked by adrenaline) that I couldn't contain my normally-stoic composure and right-out lost it in the middle of a crowded, New-Year's-Resolution-ridden gym.

Mind you, normally I'm no softie. However, it was right at that moment that my psyche digested how the arrival of this new year has marked the significant accomplishment of goals I've been aspiring toward since those drama-ridden days of early October. For example:

I spent the holidays, in good health, with my awesome family: my Mom (who was my ultimate rock throughout this ordeal), my Dad, my brother Ryan and dog Maddie -- back in my comforting hometown in Virginia. I spent equally-cherished quality time with the familiar faces of old friends and long-time neighbors whose hugs, concern and heartfelt encouragement left me speechless. Unexpectedly, I was flown to gorgeous Park City, Utah for New Year's Eve through the generosity of a married couple who I'd never previously realized were destined to become close friends of mine this year (friends who, by the way, were the ones responsible for both the anonymous stitched ninja black belt -- which I wore the entire Christmas Day over my brother's old karate uniform -- as well as a PERSONALIZED HAND-WRITTEN NOTE FROM HUEY LEWIS HIMSELF. Those of you who know me realize how huge this is, Huey being a longtime idol of mine whom I both worship and share a surname, which to my complete joy he referenced! And yes, I realize how dorky this sounds right now, but it was an overdue mention).

And finally, this week, the first of '08, I finally returned to my job here in San Francisco, which is what I consider the final benchmark of an exhaustive journey. While completely elated in greeting my (note: super-supportive and caring) coworkers after such a long hiatus, I was totally awestruck in finally settling in the same chair that not too long ago sat a former version of myself -- someone who was so scared of the unknown, of what was going to happen to her after she left it, and of course, what she would be like when/if she eventually sat in that chair again. And you know what? It felt really great to sit there, now knowing that in the end, I had nothing to worry about.

All right, so fast forward again to the gym today: the song began to play, and in the midst of it this grand summation of the past 3 months hit me all at once. And like those few "A-ha" moments in life that you can't truly explain with the dignity that they deserve, what I can tell you is that this whole experience came to a head today. And perhaps it was supported with the realization that, whoa -- here I am, back on my feet, pushing my body for the first time in months, without fear, as if nothing had ever happened. It may sound lame, but nevertheless it was one of those rare instances where the magnitude of something important hits you and at that moment you know it's one of those once-in-a-lifetime emotions that will be short-lived and all the same, life-changing.

That said, I think that if I could pass on any message to you all for the New Year, it'd be to take a reassuring inventory of the positive, great things we have in our lives. Granted, we all experience struggles: work can be tough, bills can be depressing, and the acceptance of being a real-life "adult" can be overwhelming. But believe me, your worst burdens are troubles that some people can only dream about. I feel luckier than I ever have and it's because I've glimpsed it from a darker, less-stable place. And even if you wind up at a similar place at some point -- and most of us will -- just know that things will get better. In the meantime, focus on the good life you've been given; relax in knowing you will always have an unbreakable human safety net beneath you should you ever need it.

I'm gonna go ahead and post "Amazing" below, and actually, now that it's been the subject matter of this insanely-lengthy post (sorry), I'm fully aware that it most likely won't resonate in the same way for you all as it did for me. I wanted to share it anyway, as it just happened to trigger something within me that I wanted to share it with you. At the very least, it's a good song to play during a workout.

I'm also gonna pull a switcheroo and dedicate this song to you guys instead -- while I may be considered "amazing" simply because I was able to withstand an unexpected, difficult life experience, it was you who gave me the strength to do it.


Have an amazing 2008... I, for one, plan on it.

Amazing | Lyrics

Dear Mysterious Benefactor,

Words escape me.

I beg you to reveal thine identity.

Sensei Lewis

Thanksgiving

For the most part, we've all been raised with a mild understanding of Thanksgiving involving those key symbols of: a) gluttonous dining, b) musket-toting pilgrims, c) football games, and of course, d) the ever-so-thankful 4-day weekend that (even more thankfully for some of us) precedes the busiest shopping day of the year.

Whether these attributes represent the Pilgrims' original intent is debatable; regardless, this year I discovered the true meaning of the season, which actually comes across so trite I almost hate to share it. But the truth is, All You Out There, is that we really have so much to be thankful for. We really do! In fact, this so-called "Thanksgiving" truly deserves its own 4-day weekend after all.

It took my own recent personal trauma (in having survived something as surreal one's own brain surgery) to fully realize this fact. Most importantly, it's because of this experience that I want to imprint this message on all of you:

The lives we are fortunate enough to experience are gifts that, often times, we can't fully realize until they become flashes of uncertainty. Not to mention, of course, that it would be completely useless if devoid of the people who make it worth the experience.

Yeah, I know, it's sappy and nothing we haven't heard before. Though I have to say that once you go through something as crazy as what I've experienced these past couple months, it's all you can do to not impose your learned wisdom on those you care about. My wish for all of you is to simply take a moment to breathe in the magic of the good life you have: it's realizing the beauty of yourself, of your families, and of your friends -- and without waiting for the risk of losing any of them. It's knowing that despite the unexpected cards we'll all inevitably be dealt, both good and not-so-good, that we'll be cushioned by a human support system that's stronger than we could ever comprehend.

And most importantly, it's because of this system that we will get through our struggles in the end.

This knowledge is my gift to you. Use it wisely and don't regret a day of the lives you've been given to live -- especially because of the people who are in it.

Happy Thanksgiving!

Blog B'lag

I suppose I didn't fully comprehend how many of you were actually reading this thing until the postings skewed to a halt -- and then came all of the e-mails asking what was up. So, wow -- I definitely didn't mean to let you down or keep you out of the loop (not to mention that posting updates on here one time -- versus repeatedly via e-mail and phone calls -- becomes less of a time commitment for me). So, please accept my apologies for the lag.

Not surprisingly to a lot of you, I'm sure, I have a lot to say on the topic, so I'll try to get things out more periodically moving forward. Regarding my progress (thanks for asking), I'm doing relatively well. I think it's safe to say that I've plateaued, in that a period of progress (while good) has stalled for the time being. And while I've got a ways to go before I'm 100% Amanda once again (or 75% for that matter), I'm amazed at how well the recovery process has been. I think a lot of my amazement stems from the realization that, whoa, it was merely a month ago that I was confined to a hospital bed with a spinal fluid drain stuck in my back, unsure of my future, unsure of my sanity.

Continually, I'm strengthened by all of your contact and perserverence (particularly when it takes me longer to get back to you all than I'd like). I know I keep saying it... but thanks.

In general, I just can't wait to be back to my old self again, when my energy level's back to that of a regular, healthy 31 year old. Back to when I can stop taking all the Advil. Back to when I can roll my eyes at the color printer not working again (yes, I miss being at work). And particularly, back to when when my head's less addled and it's completely obvious that a stamp belongs on the upper right hand side of a letter (versus the left, where about 20 of them were confidently affixed on a recent thank-you card binge).

The finish line is a ways out, but thankfully, in sight. Can't wait to celebrate with you guys when I get there.

When Your Body is Talking to You... Listen.

The question I'm asked most frequently is, "How did you know you had a brain tumor?" The answer is, I didn't. I found out less than a day after my (amazing, wonderful and authentically-caring) ear doctor had scheduled an MRI appointment for me, and seriously, I was completely floored. Stunned. In shock.

In fact, after having put off a hearing test for over two years (yes, that long), I would feebly attempt to scare myself into going, thinking to myself, You know, Self, you really should make that appointment, 'cause what if you have, like, a tumor or something?, after which I would mentally reply back, "It's NOT a tum-ah!" Well, as you know, I finally went for a visit, and shockingly, discovered it was a tum-ah after all.

The original purpose of this blog was to use my experience to provide other AN patients a more candid destination in locating information about acoustic neuromas versus what I found during my own research -- harrowing websites whose surgical horror stories only succeeded in scaring the sh*t out of me as opposed to demonstrating it as an understandably-challenging diagnosis that can eventually be overcome. So for those of you who are here thinking you may have a tum-ah, rest assured. You, like Arnold, probably don't have one. However, here are a list of my symptoms, pre-diagnosis, that I eventually discovered were core ingredients that distinguish the elusive acoustic neuroma:

One-sided hearing loss. I first noticed the hearing ability on my right side wasn't as good as my left side about two years ago. I compared both sides by listening to one iPod earphone at a time -- the volume was noticably different between the two. Like a moron, I attributed the loss to old age (yes, at the dehabilitating age of 28) and ignored it for a couple years. Though this past year, my hearing declined rather dramatically over a few months, and this time wasn't only a matter of reduced volume, but sound distortion. My hearing test confirmed both these points. As the tumor grows in the nerve which is responsible for both hearing and balance (a loss of balance being another AN indicator, which didn't affect me, though it could have been disguised by my natural clumsiness), this in itself was a red flag.

Tinnitus. Tinnitus (prounounced tin-ihh-tis; not tin-i-tis, as it is commonly mispronounced) is defined as "the perception of sound in the human ear in the absence of corresponding external sound(s)", or as I like to call it, that annoying, incessant ringing in my ear make it stop someone please. My tinnitus (which unfortunately wasn't cured with the surgery) is competitive and likes to increase its volume, indicating its overbearing presence, whenever I find myself stressed or, more obnoxiously, whence in a loud environment. It's extremely annoying, but like any other incessant nuisance, has come to exist relatively unnoticed until I purposefully think about it.

Facial numbness. As a result of the (unbeknownst to me at the time) tum-ah having stretched and pressed upon my facial nerve, the right side of my face had developed a slight numbing sensation -- much like the feeling of novacaine before it's almost worn off. It affected the lower portion of my jaw and tongue, and like the tinnitis, was more apparent during times of stress. Fortunately it disappeared with the surgical removal of the tum-ah.

Okay, so I know you're all, Uhhh, Amanda. You're saying you had all these symptoms -- and didn’t get them checked out? Are you stupid or somethin'?" I know. I agree. Looking back, I find it kind of ridiculous that I ignored them for so long. But I was busy. I had people to see, places to go, a job to do. Honestly, a tum-uh is the last thing I -- or anyone -- should expect to have. I mean, up until my diagnosis, I had lived a healthy existence relatively devoid of doctors and of being sick. Little did I know I'd had a slow-growing, benign tumor developing within me over the past decade -- a truth that still remains unfathomable to me.

Yet I've learned from my experience and I hope you can too. My advice is, short of becoming a hypochondriac, is to listen to what your body is telling you. If something seems alarming to you, get it checked out. And get those proper annual checkups which will tell you if something's wrong when your body isn't able to tell you otherwise. The good news is our bodies are strong enough to recover from almost any malady, and I consider myself proof of that, having emerged from this whole crazy experience as a stronger, more educated, and now, tum-ah-less ninja force.

I'm back -- and I survived!

After two-weeks it feels good to be back home! But first, before I continue: Sharon Lewis, everyone.

(insert rousing applause here)

I want to thank my Mom for all her help, considering everything she's done, but especially for doing such a good job in communicating here with you guys. It was important for me to feel as if your amazing gestures and well-wishes were being reciprocated, and I think Mom accomplished that, particularly amongst all the Grey's Anatomy-esque drama that transpired.

Anyway, hello out there! I feel like it's been so long. Probably because it has. It's been two weeks since my surgery and I am so happy to finally have it behind us -- truly, the worst has to be over. I'm finally back in San Francisco and, following yesterday's first post-operative appointment (the stitches were removed, making my scar look about 2% less Frankenstein-ish than before), and now officially consider myself in the Recovery Mode Phase. Since leaving the hospital, I've found that every day is better than the previous, and I'm really grateful to have Mom around since my energy level is still pretty low. I'm also glad it doesn't hurt as much to read the computer because I couldn't wait to get a new post up to say hi to everyone.

So, after having spent a week in the hospital -- and particularly after having never endured a medical emergency in my life -- I have, a million things I have to say, though for the sake of time I thought that perhaps I'd just share my top three observations (for now).

Observation #1: Brain surgery doesn't feel so good.

During my pre-op appointment, one my doctors warned me that I'd wake up after the operation feeling like I'd been hit by a Mac Truck. While he was indeed correct in that assessment, he unfortunately neglected to mention it would follow by the warm, fuzzy feeling of jumping out a plane without a parachute, rolling down a prickly cactus-ridden cliff onto a highway and subsequently run over by a gang of Hell's Angels. In other words, it was a bit painful. In fact, I'd say that week's little adventure could pass for some quality Navy Seal training. Even worse than the pain, though, if possible, was having to endure the constant nausea and dizziness. I couldn't even put my favorite rose-scented balm on my lips without feeling horrendously ill. Conveniently, I noted how probably 80% of TV commercials are food-related, relegating one of my main escapes, television, virtually impossible to endure. Fortunately, the onslaught of drugs running through my veins somehow made wall-watching a sufficient pastime.

Observation #2: Odds are odd.

After this experience I've become immune to the acknowledging the theory of low odds, as well as the terms 'rare' and 'low percentage'. After being afflicted with an acoustic neuroma in the first place (odds are 1 in 100,000), and the subsequent CSF leak (1 in 10 AN patients), I think I'm officially over observing those terms at face value. And yes, sure, I'm probably bitter. I deserve to be. So if something 'rare' and 'against the odds' doesn't happen between me and a lotto ticket sometime within the next year, bitter won't even be the appropriate term.

Observation #3: I just had brain surgery.

I still can't believe it. I'm anxious to see people though I'm still somewhat in hiding, as fatigue is a bit overpowering at times, not to mention I've still got quite a bit of scarring -- including some unplanned and unexpected souvenier-scars I (perhaps permanently) aquired on my forehead as a result of a too-tight bandage. The fun never ends, people.


So, I could go on forever, but think I'm going to take a nap instead (no offense). In the meantime, and while I hate to sound like a broken record, thanks to you all so much for your total awesomeness while we go through this. I was notified of all your texts, cards, and communication while in that torture chamber the hospital, and each and every one of you made it that much easier to endure. Thank you, thank you, thank you!

Lots of love,
Amanda

Happy Birthday Amanda! (aka) Surgery Super Star!

Today is Amanda's birthday and it will be a fabulous day. We are still staying in sunny Menlo Park temporarily.

This has been such a blessing to be able to stay here in this beautiful area where everything is near, no parkiing problems, no hills to climb. We will be having a small celebration this evening with Jon and Catherine, Amanda and myself either at a local restaurant (if she feels up to it) or take out! It won't be like her other martini toasting, music playing, club dancing birthdays from the past. But it will be one that we will toast her accomplishments in getting thru these many obstacles with fortitude and grace. We her parents are so proud of her and her continued courage.

Amanda is walking more, and getting fresh air. She still has trouble with too much stimuli, or able to focus on a computer, and she tires easily. But this will get better and better as the healing phase continues to progress.

We have a visit with her Doctors on Tuesday. She probably will get her stitches out, and we will learn how to take care of the next phase of her recouperation. If the prognosis is good, we will move to her apartment in San Francisco, California on Wednesday.

P.S. More Drama for the Lewis Family -- Ryan, our son, is living in San Diego where the fires are 20 miles AWAY. His business has shut down, and they are telling everyone to stay indoors because the air quality is so bad! Ryan is buying floaties in preparation for a water evacuation.

All for now, Love
Amanda's Mom,

Sharon

Amanda is out of the hospital!

The hospital is a 24 hour operation that at any time of the day or night, nurses and doctors are coming in poking, prodding, and making new assessments about your progress. This is the scenario that we became accustomed to living with every night. Suddenly, last evening, the neurosurgeon resident decided to take out the spinal tap and monitor Amanda closely to see if the leak was indeed closed.

Late today, and to our surprise, they decided to release her from the hospital. Staying in the hospital bed was only going to cause other problems in the long run. So they decided this was the best diagnosis. We were obviously elated to finally get outta there!

We are taking baby steps. We moved into a temporary home a mile from Stanford Medical Center (just in case something would happen in the next two days) and let her get a breath of fresh air, a new environment and monitor her progress, before we head home to San Francisco.

Her orders are to move very gently, no sudden head movements, or picking up anything that weights over five lbs., i.e do nothing that will endanger the leak from springing again. Just walking seems like a victory for her. And we are talking maybe ten minutes at a time, at a snails space. Her brain is trying to figure out what happened to the other side - and at times causes a great deal of havoc with loud internal sounds, headaches, and nausea when she moves in a certain way or has too much stimuli. This is what will take time, retraining her brain to accomodate the loss on the right side.

I know that her positive spirit is due to each of your kind thoughts and prayers, motivating emails and text messages. After all, we are all Ninjas!


Love, Amanda's Mom, Sharon

October 16th - Tuesday - Update

Amanda is still in the hospital and her family is with her 24 hours a day. They are still monitoring the brain fluid leak.

The brain fluid leak, a known risk factor from the surgery, is something that happens to one in ten patients. It occurs possibly when the multiple layers of skin are sewn together after they extracted the tumor, or when they patched the hole in her skull, they didn't put enough in there and a leak occured. Whichever of those scenarios happened, the process is to follow the lumbar spinal tap procedure to keep the presssure down from one's own brain fluid and away from the leak so it can heal.

This is imperative so that infection does not set in, and not to go back into surgery to repair the leak.

On the bright side, Amanda has a lot to be thankful for: the entire tumor was removed so she doesn't have to go thru a radiation process and her face function is normal!! Thank you God.


They told us that there would be hills and valleys with respect to the progress of her recovery, we are now in the valley. She is determined to get thru this. Tomorrow is another day! Keep up your good thoughts, and prayers, as I believe this is keeping her strong.

Best wishes,

Sharon Lewis

Cranial Spinal Leak - A Risk Factor

A CSL or Cranial Spinal Leak is one of the risk factors of her type of brain surgery, but with a low percentage of happening. What are the odds that Amanda would develop this problem ?

Today she was relocated to another floor - intensive neurosurgery - where she had a spinal tap performed. This is a procedure that inserts a tube in or near her spinal cord and empties the overflow of fluid from her brain thru this spinal cord into a device hanging off her bed. This was very difficult, as the needle inserted was larger than an epidural needle (those who have had children - know what I am talking about).

She is now confined to complete bed rest for three or more days. She is restricted with bed and head movement- no more than a 30 degree incline. If she wants to move, a nurse must come and remeasure every inch!!

She is determined to get thru this obstacle and get back on track with her recovery. We have decided that Amanda should play the lottery, as her odds in winning should be very good.

Best Regards, Sharon Lewis

P.S. Lets see how much we can stand! My husband's back just went out. He is now on the floor, as this is the only comfortable position.

Hospital Progress

Amanda is steadily making progress in the hospital. As with any extensive surgery, she has had a few bumps in the road. She has developed a slight brain fluid leak (dripping from her nose) - this is something that they have to make sure is stopped before she can leave the hospital, and she has some breathing difficulties with her lower lungs not functioning properly. These are all being tested, monitored and medications applied.

Her pain and vertigo are under control with a super cocktail of drugs. She has stood up and is getting stronger.

They did a great job in saving her hair, only shaving off what was needed, which she was excited to hear about. She has not seen herself, (this has been deliberate,) as she would not really recognize herself, since she is very swollen and bruised.

A few people have asked if she can have visitors. She is not up to having visitors, as she could not carry on a conversation, and gets tired very easily. She also can't read, or look at her iphone yet to respond to the many messages she is receiving. Be patient, she will get back to all of you, in a couple of weeks.

All of your prayers, special messages, and acts of kindness are getting her thru this. As her parents, we are very happy she has such a wonderful support group.

P.S. I forgot to mention that her genuis doctors are amazing--Dr. Robert Jackler, MD - Chairman of the Brain, Neck and Ear Department of Stanford, was assisted by Dr Lawrence Harsch, Head of Neurology ( AND HUSBAND OF MEG WHITMAN, CEO of EBAY).
Tumor could show up on EBAY.............

Warmest Regards,

Sharon Lewis (Amanda's Mom)

Post Surgery Update

Challenge #1 - Get thru Surgery
Amanda went thru 14 hours of surgery yesterday. This was the longest day of our lives. We finally saw her at ten oclock last night in the ICU. Good News is they removed all of the tumor. They preserved the multiple nerves that control her face, eyes, and neck. She did loose her hearing in her right ear as we expected.

Challenge #2 - Post Surgery - ICU
No one is prepared to see their child in the ICU, with the bandages, monitors, needles......it is horrifying. She is very sick from the anesthesia and because her balance nerve has been severed, she has extreme vertigo and pain in her head. They indicate this is the passage that goes with this type of surgery. She will remain in ICU all day today. We can only see her 30 minutes every two hours. She really needs to be a Ninja because it will take everything she's got to get thru this next phase.

Many of you have asked where should you send something. This is a wonderful endearing jesture, but we ask that you save this for later when we can get her home. When she does get a room, it will be shared. Once we get her out of ICU, I will update you.

Warmest regards,

Sharon Lewis, Amanda's mom.

It's Go Time

It's the night before the big surge. Tomorrow we'll be rising and shining at 5 a.m. and'll Stanford-bound shortly thereafter. It's raining and I kind of wish it wasn't -- but if I've learned anything these past few months, it's that you can't fight mother nature. So be it.

Our pre-op day today was, surprisingly, as long as an average workday. Because my procedure will encompass overlapping departments (Stanford's ENT department, their neurosurgery department and the actual Hospital -- mind you, 3 separate buildings and their staff, all of whom want to separately take your blood pressure and have you fill out forms), it's been a little bit of an undertaking on its own. But it felt good to be in the presence of doctors -- geniuses, these guys I have at Stanford -- and it was amazingly a boost that I needed. In fact, I feel oddly at peace considering what's about to go down tomorrow.

So, regarding recovery news: my mom is gonna take over blogging duties tomorrow (and by the way, how cool is it that my mom is gonna blog?), granted she can get to a computer sometime following the procedure. The job on me won't be completed until around 6 p.m. PST, so I suppose, now that I think about it, it could very well be Thursday that the news gets posted on here.

My mom will also be posting details about what can expected from me/us during my recovery, which unfortunately isn't the most glamorous process in the world. I do know, however, I'll remain at Stanford until at least Sunday.

So, I'm gonna try and get some sleep (despite it being the main activity I can expect to be undertaking over the next few days), though I have one last thing to mention: I just finished listening to a lot of your voicemails and reading your texts and e-mails, and once again, am finding myself in a humbling position of gratitude for having people like you to count on. Thanks so much, as always, and hopefully it won't be long before you'll be hearing from me again.

Lots of love to you all.

Surgery = Tomorrow

Today's my pre-op day at Stanford. Admittedly, I spent a good portion of yesterday in a very un-ninja-like mode that I like to refer to as "Oh My Gosh -What's-Happening-Here?!". I'm going to attribute yesterday's general malaise to having had difficulty sleeping the night prior, an unwilling recipient to all sorts of odd dreams and a random sense of dread.

For some reason, though, today is much better. Maybe I just had to get it out of my system. I guess I wouldn't be human if I didn't take moments to freak out every now and then.

Luckily, my awesome parents have been in town, providing a welcome and comforting diversion. We've kept ourselves busy, celebrating their wedding anniversary in Fisherman's Wharf (where they honeymooned years earlier!), watching the slick Blue Angels zoom over the Bay celebrating the end of Fleet Week, and finally, taking advantage of the amazing weather and driving a cute PT Cruiser convertible up to the Marin Headlands where we enjoyed insanely breathtaking views of San Francisco from the top of uninhabited mountains.

Despite the surgery being tomorrow, today feels like a better day. Granted, it's early in the morning, but I'm determined to keep my fear at bay for a little longer. Aside from my parents being here, I've all sorts of distractions: a spontaneous, shorter 'do (at least 5 inches of hair less than I'm accustomed to), a shiny new iPhone (courtesy of my ridiculously cool friends at work), and of course, all the voice mails, texts, and emails from all of you. Granted, I'm unable to respond to them all right now, but rest assured they're coming through and are feeding my ninja strength one word at a time.

I'll be back tonight with some closing thoughts, and will be turning the blog over to Mom after that, where she'll provide post-surgery updates. Until then, enjoy these memorable snapshots from the Marin Headlands:

Me and my most Ninja-est kick

Mom showing me who's boss

Dad's better at crossword puzzles and fixing stuff

“Experience is what you get when you don’t get what you want.”

I’ve been trying to maintain as much of a positive attitude as possible since having learned my diagnosis, and it’s been relatively easy for a couple reasons: one, because the surgery hasn’t actually happened yet, and for the most part I’m in the same shape I was before I discovered the news; and two, because I am simply not the kind of person to dwell on things that are out of my control. For whatever reason, the latter probably has more to do with the way I’m made up versus a personal mantra I force myself to live by; either way, it works for me.

The other day a friend forwarded me one of the more inspiring videos I’ve seen in a long time – coincidentally, one that supports the strength of this subject. The video features an uplifting lecture by Carnegie Mellon professor Randy Pausch, who, though seemingly in remarkable health, only has months to live. His circumstances are grave, yet his attitude is awe-inspiring and often times, fascinating. Honestly, this video is like Oprah’s show on steriods.

And while Randy Pausch’s life-threatening diagnosis and mine are light years apart — mine will hopefully only result in a couple months of rehabilitation and the loss of one ear’s functionality -- there are strong similarities between our perspectives of choosing to cope with the cards you’ve been dealt.

If you have some time, I know you’d enjoy watching Randy’s "lecture of a lifetime". This guy is nothing short of amazing and his story really will make you realize what’s most important in your lives.

Before watching the video, you can gain some insightful background info on Randy Pauch and the lecture series here.

Note: you may want to press play and allow the video to download for a minute or so and fast-forward to 8 minutes in — this is when the introductions are over and Randy begins to speak.

Hear Today, Gone Tomorrow

Okay... truth? I'm really, really bummed at the thought of permanently losing the ability to hear on one side as a result of the surgery I'm about to undertake. I know it's an obvious downer you'd expect to hear from someone in my shoes, but as opposed to, say, reading this about someone else and acknowledging its shock value, this is actually going to happen to me. And I think it sucks.

I've also been thinking about the repercussions of this sort of loss. Things like, having to suddenly find myself unable to determine the origin of an unseen noise. Or having to render one of two iPod earbuds completely useless. Most distressingly, though, I’m saddened at the fact that I’ll be unable to enjoy music in 100% full-on surround sound stereo, which, as someone who loves their music, is a tragedy in and of itself.

Because of that latter point -- coupled with the fact that I try not to take life too seriously -- I recently gathered some friends to have some much-needed fun in light of everything that’s been going on. I guess you could say I decided to give my right ear a proper going-away party. I called it “Hear Today, Gone Tomorrow.”

One of San Francisco’s most beloved cover bands, Tainted Love, was scheduled to play at a nearby venue, so I picked that as the location for our bon voyage. You can’t, after all, go wrong when 80’s tunes are involved.

Thanks to my infamous support group (not to mention a Bon Jovi hit here and there) the evening turned out to be quite an enjoyable time. I entertained guests at my apartment prior to the show and even became the lucky recipient of some unique hostess gifts, such as this:

“I wasn’t sure if you had a mono record player or not, but… here.”

And this:

Homemade card procured from the pages of the eminent Dr. Seuss

To top the evening off, towards the end of their performance, Tainted Love dedicated Journey’s “Don’t Stop Believin’” to lil’ old me – me! -- while I just so happened to be standing in the front row. The singer held her mic down in front of me for a few bars, and for a magical moment I suddenly felt like Molly Ringwald in an uplifting ending of some feelgood 80’s movie. It was awesome, and it was just what I needed.

In all seriousness, though, I’m definitely upset about having to relinquish half of my hearing as a result of this experience. After having taken this sense for granted my entire life, I’m now more than aware about how much it’s a part of me and how angry I am that it’s unfairly being taken away from me. Sometimes I feel like I’m entering this process only to become a lesser version of myself.

And then, less selfishly, there’s the other hand: I absolutely know it could be worse. I read the news. I know there are millions of other people out there who’re experiencing a million worse things. I don’t have to walk further than a few blocks from my doorstep to encounter our city's homelessness to realize that, all in all... I ain’t got it so bad when I really think about it.

In light of that perspective, I do know that in the grand scheme of things I shouldn’t let this bother me. So I’m going to try my best and not let it.

After all, I have a whole ‘nother ear I can count on.

Atmospheric Support

In collaborating e-mails to announce the creation of this blog to my family and friends, I was struck with the realization of what it must feel like to create a wedding-invitation list. And, I’m not referring to the actual process of compiling such a lineup; rather in taking a surreal moment after the fact to look at an aggregated list of the people that comprise your own little personal atmosphere.

While seeing everyone’s names amassed together was wild enough in itself, even more mind-boggling was to reflect on how each name on that list has affected my life in a different way.

Clearly, I've experienced several epiphanies throughout this experience (carpe diem and similar once-trite philosophies that seem to become even more revolutionary during times like these), and one of those epiphanies was realizing how lucky I am to have such a great support group of people who, like, actually care about what happens to me.

A support group that sends me things like this:



And advises me to avoid getting into very specific situations like this:



Due to now-personal experience, I think it might take a jolting personal experience to fully realize the power of having such a support group handy. Whether it’s someone to unabashadly complain to, to create silly tumor puns with, or simply to provide a necessary distraction while playing the Nintendo Wii, it's the personal atmosphere who's been saving my sanity.

I've been a little stunned by the awesome outpouring of generosity and support over the past couple of weeks. While most folks seem to feel that saying "if there’s anything I can do..." is a futile gesture to make, rest assured, is isn’t. Every single "if there's anything I can do" is further proof to me how lucky I am to have you to tell me that in the first place.

Yes, having to deal with an uninvited tumor sucks, but at least I have a kick-butt team of friends and family to count on while doing so. Your cards, letters, e-mails, stories and humorous e-mail attachments are proof of that – and are strengthening my confidence every day.

It's a humbling feeling.

Can you imagine going to a routine check-up and finding out, 48 hours later, that you have a brain tumor?

Well, that's what happened to me.

Once I heard the words, "You have what is known as an acoustic neuroma...", I felt I was having an out-of-body experience and could not perceive that this was happenening to me. I have a brain tumor the size of a golf ball in my head.

Though it was only recently that I held the MRI scans in my hand, looking at a picture of my very own brain and struggling to digest the newfound knowledge that I -- an otherwise active and healthy 30-year old -- had a tumor in my head, I learned it was not a recent development at all. According to my doctors, this -- what did they call it? -- acoustic neuroma had been slowly developing over the past 10 years or so. (And you think you know somebody!)

An acoustic neuroma is a slow-growing, benign tumor that originates in the vestibular, or balance nerve, connecting the inner ear to the brain. The balance nerve runs beside the nerve of hearing and the facial nerve which controls movement of the facial muscles. These three nerves travel through a bony canal known as the internal auditory canal.

I know -- what? Here's a little diagram to better explain all that. And here's a general overview to read about it in more detail.

And so, after having overcome the initial shock, fear, and just plain feeling-sorry-for-myself, my family and I sprung into action to locate the best surgeon in this field -- and guess what? We found him, locally (!), at Stanford Medical Center. I'll be undergoing a complex procedure, known as a translabyrinthine surgery, to remove the tumor on October 10th.

While overwhelming and scary as all get-out, I must admit that, despite the seriousness of the diagnosis, I'm excited about the location of the procedure. Stanford! It feels like I've been accepted to the university or something. In fact, the surgical team who'll be tackling my surgery is one of the most sought-after in the country, and both my brain and I are elated about that. Because, lemme tell you, when you know you have to find someone to tinker around in there, you become obsessed with finding the best person to do it.

The brain surgery itself is very complex -- 12-14 hours -- followed by a week-long hospital stay and 6-8 week recovery. I'll provide details on the actual procedure in a separate post, though to sum up, it will unfortunately result in total loss of hearing on my right side (where the tumor is). This is the best possible outcome of this whole process, and ironically, is the goal we're aiming for.

I've gone through a million different emotions throughout the past few weeks, asking a lot of "Why me?" questions and all that, but then realized: "Why not me?" I've discovered, through many shared tales of friends and relatives' own personal struggles, that things like this simply happen. Life is just like that. You can't predict it, you can't anticipate it, and you can't prevent it. So you have to just deal with it and move on.

That said, I've also discovered that it can be really hard to deal sometimes. It's natural to feel scared and shocked and sad and vulnerable, though more importantly, it's empowering to feel invincible and strong and confident and brave. I'm determined to focus on the latter, which is largely due to the unwavering support of family and friends (like you) that make situations like these bearable.

Thanks, so much, to everyone (especially you, Mom) for all you've done and said and offered to me so far. I know I'll overcome this ordeal, and I have all of you to acknowledge in helping me along the way.

With you -- plus a few genius doctors -- on my side, I know I'm gonna be okay.