A Whole New Normal

The Gala did not take place on my last night in Shanghai, but this will be my last post about the week that was.  The only souvenir I really searched for was for something, anything that said “Pudong” as Ken thought I made up the name.  Apparently, it’s easier to find something in China that says “Bellingham.” Pudong is more of a neighborhood name, so every souvenir either said “China” or “Shanghai.” I was able to use my mad Linguistic skills and eke this out of a street sign:

 

I’ll be printing t-shirts soon…

I did finally find some postcards that were incredible historical photos, and mailed them back to the states on my second day. As of today (three weeks later) they still have not arrived. I’ll keep you posted. (See how I did that?)

The Gala Event brought us to the East side of Shanghai, through the Renmin Rd. Tunnel. There were three or four busses to take the 200 or so delegates, faculty and guests.

 

The Gala took place in the Shanghai Classical Hotel, located in the Yuyuan Tourist Mart, a famous garden in Shanghai, was founded in 1875. Entering the lobby, on the walls hang pictures of the hotel in different developing periods, which make a visitor think he came back to Shanghai in 1940s. On the third floor, with the help of trolley buses and menus of that period, visitors can experience unique emotional appeal of the past Shanghai. Lido, Parliment, Broadway, and Queen—four famous ballrooms in Shanghai before liberation. Shanghai Classical Hotel has hosted heads of many countries, ambassadors and celebrities, such as First Lady of Russia, Mrs. Putin, Singapore President Nathan, former First Lady of China, Ms. Wang Guangmei, well-known business man in Hongkong, Mr. Run Run Shaw, and Indonesia’s President Megawati, who came to Shanghai to attend APEC conference.

 

We walked around the Yu Garden Tourism Area 

Yu Garden Old Street: Concentrated with special traditional products of Shanghai old area, the old street fully reflects the management characteristics of “famous, special, excellent and exquisite”.

 

 

 

Nine Turn Bridge & Lake-Center Tea House: By the name of “Pavilion in Lake Center”, Lake Center Tea House is the oldest tea house in Shanghai. Together with Nine Turn Bridge, they are the symbols of Shanghai.

 

We arrived well after sundown, and as we walked around in the dark, the beauty was made even more vibrant by the bazillion (yes, that’s a number) lights.

     

      

 

   

And then finally, the dinner.         

I spent a lot of time trying to figure out what I was eating. Only one item made me stop and behave, that was the jelly fish. The lobster more than made up for it!

    

 

I look back on my days in Shanghai, not very many, and they all went so quickly. Thanks to those who followed me on Instagram, and thanks to everyone else who put up with me on re-entry.  Now, on to what’s next!

Acoustic Neuroma Awareness week, coming next week!

I believe in an earlier post I mentioned the cab/limo/death mobile I took from the airport to the hotel the night I arrived to Shanghai. It was the first of many harrowing automobile rides I experienced over the course of the four days I survived in the city with roads filled with cars, busses, bikes and mopeds.

The first car I rode in did not have a working seatbelt where I was sitting. Actually, over the course of the four days, only one cab did have a functioning seatbelt. So every time, I just made sure my door was locked, in the event the car rolled, I believed would not get thrown from the vehicle.

The first taxi driver got the car up to speeds of 150kh. I only know that because the way he whipped around other cars on the freeway, I thought they were standing still. I get traffic. I do. I talked about it in this Minute here. I don’t know how long the ride was, I only hoped that I would live long enough to get out of the car in one piece.

I arrived at my hotel, shaken and stirred, and was surprised when the driver yelled at me for not giving him a tip. I had read that tips were already figured in to the bill. Maybe I looked American and he thought I would tip him. Anyway, I didn’t think I’d ever see him again, so I wasn’t worried about fall out from offending him.

The walk from my hotel to the conference center was actually only about 20 minutes. If you happened to be able to read Chinese characters and and knew which way you were going. It was a comparatively short (5-7 minute) cab ride, which would hardly garner a long distance fare or potential tip. Some taxi drivers told the young man at my hotel that they “didn’t know where the conference center was.” I believe they turned down the fare because they DID know where the conference center was, and actually hated driving around there because they knew the roads were a veritable death trap.

When I was ready to head to the conference center that first morning, the concierge at my hotel helped me explain to the willing taxi driver where I needed to go. It was 7:30am, the roads were MUCH calmer. I could actually experience the city, see buildings, people, architecture. I was surprised at how much construction was going on in town. At one point, I thought I heard gunshots, but it was firecrackers in the base of the construction of a new highrise. I suppose it was to ward off evil spirits.

The Chinese have an interesting concept of a roundabout. There are no rules. We have rules here, I know. I did this Minute to point out what the rules are. But it would not have helped. There are no lines, no clear driving lanes. I believe the road “rules” in Shanghai are only suggested concepts that no one follows. I was surprised I did not see many accidents. Only the results of two fender benders in fact. (Upon my return, I learned that our friend Rennie had been INVOLVED in three accidents over the course of a week. I’m glad I didn’t know that!)

The last day of the conference, I got a late start heading out. And for some reason, it is more difficult to get a taxi on Wednesday than any other day. When a driver finally did agree to take me to my destination, he drove slower than every other cabbie had.

And then, without warning (or maybe he did and I just didn’t hear him) he pulled over on a busy road and parked the car by a public toilet.

Parked. The. Car.

And got out.

And left me there as the cars whizzed by.

I was in such a state of shock, I didn’t even whip out my camera for photo evidence. That’s pretty big shock my friend. Adrenaline was rushing. What to do? Get out? Hail another cab? Walk towards…where?

He came back in that long/short minute without a word and drove me to the hotel. I’m still counting my blessings.

Behold a 1 minute video of an instant experience of the roads while I was safely ensconced in the body of a 50 passenger tourist bus. There is no way I would have been brave enough to video the close calls I experienced while I was a passenger in every cab.  I was  too busy sucking in my breath, flinching and/or closing my eyes in anticipation of impact.

Next blog…the Gala!

As an Acoustic Neuroma surgery survivor (taking into account those who are W&W and post-radiation) I often read questions that come up regarding air travel. “Is it safe? Comfortable? Possible?” I am here to say, “YES!” and even in the extreme.

I tried to write about 48 hours after I arrived home from getting on a plane in Dallas at the end of my ANA Board meeting. 48 hours before that I was on a plane returning from six days in Shanghai to go to Dallas for said meeting. The operative word is “tried” because for those 96 hours, I felt like I was just barely able to function, putting one foot in front of the other, being “awake” because it was light out, and blessing the universe when dark came so that I could sleep.

Until then, I could barely put pen to paper (or hands to keyboard) for much more than a few characters together in an email, on an Instagram photo or response to a Facebook comment. But as I started thinking about the past ten days, and how amazing they were, I knew I was ready to share them (if anyone was interested.)

So I’m breaking my trip to Shanghai into a few postings, about the touristy part of the trip itself, I will post on my personal blog, not on the ANA page. It will include more scenic photos and stories of my sometimes successful-at-traveler, sometimes culture-clashing experiences.

There is an earlier one about the business of the International Acoustic Neuroma Conference in Shanghai. There are some photos and videos along with that, which was shared on the ANA website as well.

DAY 1

After 14 hours of travel and the 15 hour time difference, I was TOAST!  Getting through customs in Vancouver BC was pretty simple, then getting out of the airport in Shanghai was equally easy. Thankful for my personal travel agent Genny Cohn who encouraged me to arrange for roomy seating on the plane, and there was a seat between me and my row-mate (even though she quickly took up both seats and curled up to sleep) at least I had room for my legs. Note to self-take shoes OFF on long distance flights.

Did I mention that there was a higher than usual quota of screaming children on this flight? And the ear plugs offered by the airline were lame.  Lucky for me I brought my own from home.  No baby can scream loud enough to break through them!

Getting off the plane was like walking through a paparazzi line, only instead of calling the names of celebrities, they were all yelling “taxi.” In my exhaustion, I realized that yes, I needed a taxi.  450RMB later, I was in a taxi that at times went speeds of up to 150kh.  When I safely arrived at my hotel, I found out it should have only cost 200RMB.  Lesson #1 learned.  I chose a Marriot for two reasons. I knew they would speak English, and I wanted the points. 😉

The hotel had quite a spread of evening repast.  I was too tired to eat, and tried to sleep, to get ready for my first day in China.

 

GOOD MORNING SHANGHAI this was the view from my 9th floor hotel room window. If you see the two taller buildings on the left, the spire of the Pearl Hotel can be seen in the grey haze. That’s the neighborhood where the conference was taking place, a 20 minute walk, and 12 minute “Mr. Toad’s-Wild-Taxi-Ride.”

After I checked in, I had half the day to wander.  I took another cab to the west side, and visited the Jewish Refugee area.  I had no idea this even existed until the day before I left home.  Check this out if you are interested. www.shanghaijews.org.cn/English/ Thank you Becky Elmendorf!

 

This was one area where the Jewish refugees lived in Shanghai in the 40’s. Very European feel to the construction, and the colors were vibrant compared to the cement grey and blackened wood of the side streets.

 

 

 

 

 

 

 

 

 

I thought that if you clicked on any of these photos, you would see them larger.  Sadly, no.  Anyway, my maiden name “Simon” was shared by many refugees.  I don’t know if any of them were relatives of my family, but it does explain (at least to me) why I feel like my Chinese friends are like family.

 

 

Peter Max, the artist who made his rise to fame in the age of 7-up had family members saved in Shanghai.  He was always one of my favorites when I was in high school.

 

After the museum, I finally realized I hadn’t eaten a meal in about 36 hours and was ravenous.  I didn’t want to go to a touristy place. I wanted to find a local spot!

Two men in the gift shop at the museum recommended a place to each lunch (street food) but not out of a cart. This was two blocks from the museum, but right across the street from a sweet little park.  It smelled good, looked clean, and there were other normal looking people eating there.  I decided my hunger overwhelmed my fear of the unknown.

 

This young man was very sweet, even looked pleasant while I took his photo. After I got home,I asked my personal interpreter (Caleb) to translate whatever the He*! I ate (the dish on the far right of the sign) and he could only tell me “peanut sauce.”

Duh!

 

 

 

Yes, that is the evil green herb in that soup.  I did taste the soup, I’m not a heathen, but I did not do more than that.  The dumplings were filled with greens, I think broccoli and bok choy, and smothered in a tasty peanut sauce.  I ate every bite.

 

 

 

 

 

 

 

 

 

 

This sign was at the entrance to the park across from the restaurant were I had lunch.  It was very calming and serene there, unlike the roads and sidewalks.

 

 

 

I thought these men were so beautiful. I was trying to figure out if they were playing checkers or some other game.

 

 

 

 

 

 

I arrived back at the conference center, and still had a few hours to kill. The concierge at the hotel suggested I take the pedestrian trolly over to the Bund.  It’s 4 minutes, I tried to load the video here, but it’s too big of a file.  Here is the YouTube link if you want to see it.

 

 

Here’s the photo of the tunnel anyway.

 

 

 

 

 

 

 

In keeping with Caleb’s photo journal, I was amazed at how many people were at the Bund walking back and forth. I walked so much that first day, it was kind of surprising (and good, since I barely went anywhere for the next three days!) 😉

 

It was an amazing view to the east side of Shanghai from were I was. Yes, it’s very hazy there. My eyes were red and stinging like they haven’t been in years since I moved from L.A.

 

 

 

 

I got back to the east side before the sun set (and before the evening welcome.) This delicious champagne and lychee was not disappointing.

And as the sun set in the west over the far east, we called an end to a lovely day in Shanghai, looking forward to what the coming days would bring.

 

 

 

But wait, dinner was needed.  Where better to get Shanghai dumplings than in Shanghai.  I found a shopping mall and made my way to the food court. (I didn’t grow up in the Valley for nothing!) There was a bit of a communication breakdown, luckily a nice young man took pity on me and helped me figure out how to manuever through the food court. I thought I had died and gone to heaven. These were the most delicious things I ever ate, and there was so much sodium in them I swelled up like a balloon. My hands looked like Micky Mouse’s. It was worth it.

 

 

 

If you ever get to Shanghai, this is the place.

 

 

A final shot of the beautiful lights of the PuDong area. The photo of Toni&Guy is for my friend Emma!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Next: Lucky to be alive!!

 

 

 

 

 

 

 

As an Acoustic Neuroma surgery survivor (taking into account those who are W&W and post-radiation) I often read questions that come up regarding air travel. “Is it safe? Comfortable? Possible?”  I am here to say, “YES!” and even in the extreme.

I started to write this post about 48 hours after I arrived home from getting on a plane in Dallas at the end of my ANA Board meeting. 48 hours before that I was on a plane returning from six days in Shanghai to go to Dallas for said meeting. For those 96 hours, I felt like I was just barely able to function, putting one foot in front of the other, being “awake” because it was light out, and blessing the universe when dark came so that I could sleep.

Until then, I could barely put pen to paper (or hands to keyboard) for much more than a few characters together in an email, on an Instagram photo or response to a Facebook comment. But as I started thinking about the past ten days, and how amazing they were, I knew I was ready to share them (if anyone was interested.)

So I’m breaking my trip to Shanghai into a few postings. This one is about the business of the International Acoustic Neuroma Conference in Shanghai. There are some photos and videos along with this. I’m sharing this on the ANA website as well.

The others, about the touristy part of the trip itself, I will post on my personal blog. It will include more scenic photos and stories of my sometimes successful-at-traveler, sometimes culture-clashing experiences. You are also welcome to enjoy that if you wish.

Dr. Tom Roland is responsible for my participation in this event. He was sitting on my right at a board meeting last fall, my good ear side, and said loud enough for me to hear that ANA should have a presence at the 7th Annual AN Conference. In Shanghai.

I love being a member of the Board of ANA. I work with the most amazing, committed, passionate people who do the work they do on behalf of ANA FOR FREE. I know I have strengths and gifts to share with ANA. I know that one thing that makes me feel good is to be grateful and to use my gifts for good.

I could see myself in Shanghai, walking up to these complete strangers, these internationally known and respected doctors and surgeons, and shamelessly share the existence and mission of ANA. I would tell them I was a lucky patient, supported and educated by ANA. (This was harder than I thought it would be.)

Three months after that October board meeting, I was told I could represent ANA at the International Conference. I purchased a round trip airline ticket, made a hotel reservation, applied for my Visa and watched the clock tick the days away until my departure date of April 10.

I arrived to the Conference location early in the morning on the first day of registration.

Like a kid on the first day of school, or a crazed fan at a rock concert, I could barely contain myself. I was looking forward, anticipating what I had hoped to be not only a successful trip, but one that would justify the amount of time I had spent sitting in an airplane, away from home, just because I thought it was a good idea at the time.

 

 

 

When my cab pulled up to the building, a billboard sign announced the event. I felt like I was at the AN Olympics.

 

 

 

 

 

Registration opened before 9am. I know I must have been one of the first people there..every station had someone there, ready to help in whatever language they spoke.

 

I picked up my name tag and my bag full of conference materials.

Then I had 8 more hours to kill until the opening gathering. I went into the hotel next door where a majority of the conference faculty presenters and delegates were staying and sat in the “coffee shop.”
Sitting directly across from me was Tom Roland. He invited me to sit with him, and we chatted about the conference, about ANA, about his being on faculty as a presenter, and showed me the beautiful porcelain pen gift they gave him to thank him that was given to him with his conference materials.

 

The little one is mine. (I like my pen just fine.)

 

 

At 6:30 there was a reception to welcome the delegates and faculty. I met two surgeons from Denmark who told me that they use the ANA materials in their country and they are very helpful. Shortly thereafter, the surgeons who are on the ANA MAB came in, Rick Friedman, Marc Schwartz and Mike Link. They introduced me to their associates. Marc was kind enough to point out Dr. Gareth Evans, a surgeon from UK who was very happy to chat with me about ANA and his presenting topic, NF2 and treatment options.

The next morning came very early. I don’t know why mornings come so early when I’m away from home, but this one did. There was a surgical presentation at 7:30, I skipped that. The opening ceremony came at 8 with full welcome by the International Committee President. (sorry about the formatting of this video…it’s only about 30 seconds. But it takes up two pages on the screen until you click the “play” button.)

 

In my packet of materials was a book with descriptions of all of the presentations, panels, keynotes and faculty members. I had carefully looked through the night before the first day to decide which “courses” I would attend. I chose them based upon my personal interest and curiosity, as well as by presenter. Here are a small fraction of what was offered, the schedule of presentations that I attended:

SUNDAY:

Registration
Welcome Gathering
MONDAY:  Opening with full ceremonial dance which is sadly, way too big to post here. Trust me, it was incredible.

Keynote Dr. Brackmann from HEI about his surgical experiences
Keynote Dr. Madjid Sammi from Germany about his surgical experiences and offer of advice to new surgeons
Panel   on Facial and Hearing preservation in AN. This included case studies which I found interesting because on occasion, surgeons would have different advice for how to treat the AN. They showed videos of surgery…at times I did have to look away.
Keynote Dr. Evans from UK who has done extensive research and treatment of NF2
Chinese Experience
AN Management
Giant Tumor/Hearing Restoration Many of the surgeries presented included implantations of CIs or ABIs when hearing loss was confirmed (after translab)
Treatment Options I attended this seminar because it referenced “transonic approach” in treatment…I’m still not sure what that was.

I also spoke directly with doctors from Japan, England, Germany, France and the Ukraine.

TUESDAY:

Keynote Dr. Mario Sanna from Italy regarding his personal surgical experiences and his treatment and management preferences.

Keynote Dr. Takanori Fukushima from Japan on hearing preservation
Panel on treatment of NF2- There were a few videos of surgery, I took my glasses off to blur the details, but didn’t look away.
Panel on Mayo Clinic Experiences and results of partial completion of Quality of Life Survey
Panel on post Radiosurgery treatment – a lot of comparative results based on W&W, post surgery and post radiation in response (or contrast) to the comments made by surgeons. There was also a physician who was SUPPOSED to talk about tinnitus, but at the start of his presentation, he said it was too difficult to discuss. NO KIDDING!  Sheesh.
Decision Making with David Moffat of England
Panel on Management of Facial Palsy – fascinating and hopeful
Decision Making with Marc Schwartz of HEI
WEDNESDAY:
Panel on NF2 Challenging cases
Keynote by Dr. William Slattery from HEI on Middle Fossa
Keynote Dr. J. Thomas Roland from NYU on NF2

Panel on treatment of AN after failed radiation – I’m not sure how, but I appear to have turned the corner here. Not only did I watch with sincere interest, but I could recognize the facial nerve!

Vestibular Complications – This was the first time I had heard the term “pre-hab” in relation to pre-treatment vestibular evaluation and therapy. This is used in South Africa and Sweden. I’m hoping more patients around the world have this an an option.

I also spoke with doctors from England, Egypt, Canada, Sweden

Closing:  It was announced that there were 500 faculty, delegates and participants from over 300 countries!  I spoke with 25 from 10…. not too bad.

It was also announced that the next International Symposium would be held at the Mayo Clinic in Rochester, Minnesota. Pretty exciting!

OVERALL:

All of the presentations were offered in English. The keynotes, when presented by non-English speakers, were also posted on their power point. Most of the people there spoke some limited level of conversational English, but absolutely fluent French (in my observation) in addition to their native language.

There was little if any discussion regarding how the treatments are financed, whether it’s by private pay, insurance, government or general health care. It will be interesting to connect with and follow up with patients from around the world.

next: playing tourist

I was looking forward to attending my second meeting as a board member and was excited and emotional.

The meetings from Friday through Sunday were engaging and enthusiastic.

Take 13 AN patients– post-procedure and watch and wait.

2 caregivers.

11 care providers. (1 by phone)

1 executive director.

Add ingredients and stir gently yet vigorously for two+ days.

Behold the magic!

The weekend overall was exhilarating and exhausting.

Thanks to all who participated, and thanks also to the members, donors and otherwise supporters of ANA.  We do what we do because of those who walked this path before us, to hopefully help to make a smoother road for those yet to travel this road.