There and Back!

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.

 

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

 

 

 

 

 

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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.

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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

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ONE. MORE. SLEEP.

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(as if….)

I’m pretty much all packed, looking forward to the rain and humidity and what that will do to my attempts to look professional.

Thanks for your support and encouragement.

If you are or know an AN patient, let me know what (if anything) you would do/ask/seek out from this international opportunity.

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If I can survive brain surgery, I can survive a trip to Shanghai. At least, I think I can.

The countdown timer is ON! I shared it on my FB page for the book earlier this month, but I think no one really trolls around there like I do.  Click on “timer” below…

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I somehow convinced the CEO and the Board President of the Acoustic Neuroma Association that it would be a good idea for me to represent ANA at the 7th Annual International Acoustic Neuroma Conference being held this month.

This was my bright idea, thanks to an offhand remark made by someone at our last board meeting regarding the conference. I agreed to pay my own way. Did I mention it’s in Shanghai?

If I can survive brain surgery, I can survive a trip to Shanghai. Followed immediately by a two day board meeting in Dallas. At least I hope I can.

On a side note, I don’t have the skill set to surf, or ski, or run or bike or make music or fly an airplane like many others who have traveled this AN journey before me. But then, I never did. I always wanted my new normal to be as much the same as my old normal as possible. Honestly, I don’t care that I can’t hear out of one of my ears anymore. I don’t care if I never become skilled enough to surf, or ski, or run or bike or make music or fly an airplane.

But travel is something I have always loved to do. I have traveled to countries where I did not speak the language. I’ve traveled domestically with little or no sleep and functioned just fine. And happily, I think my children have inherited that same love.

What if I won’t be able to travel like I did when I was in my 20’s and 30’s?

35 or so years ago I went to Japan with a tour group. I do not know any Japanese (except counting to five.) After being there for about 5 days, I took a side trip BY MYSELF ON THE BULLET TRAIN to a little city with a big Temple. I got lost, but got found, and made it back home.

30 or so years ago I went to Greece with a tour group and I took a side trip BY MYSELF and went to a beach recommended by my friend Gail. I didn’t get lost, and I (obviously) made it back home.

THIS WHOLE TRIP TO SHANGHAI AND DALLAS IS A SIDE TRIP!

I’m older (ahem) and somewhat hearing and balance compromised. I need more sleep. I have no tour group leader meeting me at the airport to get me to my hotel. Or getting me from my hotel to where the conference is. Or getting me from the conference back to my hotel. I have no time to catch up on my sleeping.

This time, I’m more nervous.

I have to keep thinking and remembering all that I have been able to accomplish in the past five years. I took care of my mom in the hospital, twice, once with a 24 hour turnaround. I took care of Ken in the hospital last fall. I flew and traveled for hours to visit friends and family in California, walking all over town, sleeping in sketchy neighborhood hotels, renting cars, taking the train. I memorized and performed a 30 minute monologue. I volunteered many hundreds of hours doing various projects. I have, on recent occasion, multitasked. I survived.

I appear to be able to rely on myself.

I am posting this update on April Fool’s Day 2015. It would have been my mother’s 84th birthday. I know if she was here, she would be the first one to reassure me. And that is reassuring.

Life changes, moves on, we can choose to look at our past with regret for what is lost, or with renewed-energy for what is possible!

I depart on April 10. The conference takes place from April 12-16. The board meeting is on April 17 and 18. Then I’ll come home. Rumor has it there is no Facebook in China. So, for those who are interested, you can follow me on Instagram (mjbronstein) or Twitter (@marlabronstein.) Otherwise, I’ll do another post on my return.

If I can survive brain surgery, I can survive a trip to Shanghai. Followed immediately by a two day board meeting in Dallas. I know I can.

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5 year ANiversary! What a long strange trip it’s been!

(original link)  http://qoatip.blogspot.com/2015/02/february-10-2015.html

 

February 10, 2015

I know, me…me…me…..today is the five year anniversary that Norman and I parted ways.

This past summer, on June 10, 2014, I celebrated the 5 year anniversary of my diagnosis, the day I was first introduced to my acoustic neuroma. Norman. That moment is a perfect memory. It was as if my world froze in its place, and I felt like I was drowning in quicksand. Since then, life has been a whirlwind. From diagnosis to surgery was 8 months. (Interestingly—or ironically—I only knew Ken for 8 months before we were engaged.) I guess I prefer fast paced life!

Today, I’m celebrating February 10, 2010.

At the beginning of 2015, when I started thinking about this date, I was 30lbs heavier than the day I was wheeled into surgery, thanks to my aging metabolism. At the beginning of the year, I committed to doing some sort of cardio at least 30 minutes every day and I’ve been pretty honest about doing that! (Now I’m only 10 lbs heavier….I’ll take that small success….)

So many amazing things have happened in the past five years….high school and college graduations. The Army. A book. A new career. Chicago. Hawaii. Elections. Board work. A heart attack (Ken’s, not mine.) Anniversaries. Bat Mitzvahs. Weddings. New babies. Videos. Theatre productions. Music recitals. Too many funerals. I joined the board of the ANA a year ago.

I’m feeling great. I have my two year follow up scheduled for March 12.

On April 10 of this year, I’ll be getting on a plane headed to Shanghai, where I will be representing the ANA at the 7th Annual Acoustic Neuroma Conference. Every month since my surgery, I connect with at least one newly diagnosed AN patient. Every month, I get to pay it forward. This is what I believe.…It could be worse. It’s not cancer. Someone I love might get sick. And die. Or just surprise me and die. (see above)

I’m grateful to you for reading this and sticking with me.
I’m still here. And I really appreciate you for being here too.

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Fall 2014 ANA National Board Meeting with the Medical Advisory Board

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.

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Elizabeth Claus calls in from Yale. New board member David handles the AV end of things on the fly.

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Apparently, Pop is preferred over coffee for the morning pick-me-up.

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Agenda for Day 2. Light topics for discussion. 😉

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focused power.

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Karla’s award for exemplary vice-presidential-ship. (and for running a kick-ass meeting with the MAB)

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This beautiful running jersey was donated by our board member Joel, this shirt will be presented to a randomly chosen member who either joins or renews their membership before the end of the year. (if you just renewed, you can do so again..why wait?)

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Board member Deb Walls photo bombs MAB member Rick Friedman.

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Tom and Karla

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Roberta

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mkarla

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tom and Me

 

 

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4 years and counting!

ANniversary sale!
I am offering a special for the month of February, the ANniversary month of my surgery. A Whole New Normal, regular list price of $14.95, will be sold for half off!!

You can ONLY get the sale price through the CreateSpace site (see link below), and only for the month of February.

https://www.createspace.com/4373800

and enter this discount code at checkout: CDHCN9WW

Thank you for being with me on this journey!!

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ANniversary sale!

I am offering a special for the month of February, the ANniversary month of my surgery.  A Whole New Normal, regular list price of $14.95, will be sold for half off!!

You can ONLY get the sale price through the CreateSpace site here, and only for the month of February.

https://www.createspace.com/4373800

and enter this discount code at checkout:  CDHCN9WW

Thank you for being with me on this journey!!

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Comments from Kate Boswell, MFT

This is the memoir of a self avowed strong woman, with a “be everything to everyone” stance, traveling into a place of becoming comfortable as a “mere mortal.” She takes us along on her journey toward being able to express fear and vulnerability, toward asking others for help, and toward learning the importance of setting boundaries.

It is my belief that when “bad” things happen to us, we can use that stuff as life enriching fertilizer. Marla Bronstein’s story is a powerful illustration of this idea. In addition, her book is a good, enjoyable read, sprinkled with lots of wisdom, humor, and inspiration.

I strongly recommend this book  to anyone taking  the acoustic neuroma journey. In addition to the examples of  emotional growth, it  provides much practical information for various stages of the journey.

Kate Boswell MFT

Presenter on “Coping and Beyond with the Emotional Impact of Acoustic Neuroma” at the 21st Acoustic Neuroma Symposium (Los Angeles 2013)

www.aneuromacope.com

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From Dr. Superman (Douglas Backous, MD, FACS)

“A Whole New Normal walks readers through the journey of a person who is confronted with the treatment for an acoustic neuroma. The author gives an honest and vulnerable testimony to the complex emotions, fears and challenges people face with such a life disrupting experience. As a surgeon who treats scores of people for this condition every year, I value this book as an asset for people in all phases of their treatment path.”

 

Douglas Backous, M.D. FACS

Medical Director of the Center for Hearing and Skull Base Surgery, Swedish Medical Center

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Self-Publishing talk featuring the authors of A Whole New Normal and A Slippery Slope

Local writers Marla Bronstein, A Whole New Normal, and Marian Exall, A Slippery Slope, both chose to self-publish their work in 2013. Exall has written a mystery novel featuring a female protagonist, while Bronstein’s book is a memoir about her struggle with acoustic neuroma. Learn about their individual writer’s journeys and how their books are faring in the rapidly changing world of publishing. VB’s Brendan Clark will also be on hand to discuss local self-publishing options.

For more information, check here:
http://www.villagebooks.com/event/marian-exall-marla-bronstein

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