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.