Author Topic: This Week 8/30 in the AN World  (Read 2899 times)

Rich56

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This Week 8/30 in the AN World
« on: August 30, 2009, 01:55:18 pm »
According to my research LADavid began wishing those on the AN Calendar well in a thread of it’s own on March 31, 2008. http://anausa.org/forum/index.php?topic=6184.msg58218#msg58218
And on July 27, 2008 LADavid gave that thread a title, and “This Week --/-- in the AN World” was born, a weekly update of the AN Calendar events offering sincere words of encouragement to those about to have surgery, recovering, and reaching milestones/anniversaries.

As most of you know, LADavid is one of only 250 individuals nationwide involved in a clinical study of a device called the BrainPort, “which if successful in it's mission, it will train the vestibular system to behave” a quote from David himself.

David, thank you for your participation in the study, and for creating such a wonderful thread, maybe one day the words written will again be yours, until that time we will continue your message of hope and encouragement.

Keri has been carrying the torch, and has passed it on to me for a while.  Thank you Keri, and we are glad all is going well at Scott’s graduation.
 
Well, this week is starting off with quite an inspirational story.  After having surgery just four short months ago on April 28, 2009 Laura (Allegro17) is competing in the Subaru Ironman Canada.  The competition started this morning at 7:00 a.m. with a 2.4 mile swim competition, followed by 112 mile bike race, and finally a 26.2 mile run.  The competition concludes at 12:00 mid-night tonight.  UNBELEIVABLE! 

So, for those of you looking for a little inspiration as you start or continue your AN Journey, you can follow Laura’s progress (bib# 2147) at:
http://ironman.com/events/ironman/canada?show=tracker
She has completed the swim, and the first 42.5 mile segment of the bike race at the time of this posting.   We are cheering for you Laura, you are amazing ;D

Scarlett and I had the pleasure of meeting Laura at the AN Brunch at Maxwell’s in Worcester, MA. April 19, 2009, Laura ran in The Boston Marathon the next day. 

Monday, McK will be having the final FSR (fractionated stereotactic radiotherapy) treatment.  We’ll be praying for success in the treatment.

Tuesday, nothing scheduled.

Wednesday, Mike (mjminer) will be having MF surgery.  Hopefully you and Mandy were able to connect, regarding The Magic Scarf.  You will be in our thoughts and prayers for a successful and uncomplicated surgery.

Thursday, Happy Birthday to Saralynn as she celebrates her 43rd birthday, Phyl has her 3½ year follow-up and we’ll be praying for good news (congratulations on your award, there is no question you deserve it :)), and Denise Carey has surgery.  I have not found any information on Denise, but we will be praying for an uncomplicated successful surgery. 

Friday and Saturday have nothing scheduled.

We are sending our prayers and good thoughts to everyone in the recovery stage of their AN journey, for brighter days ahead.

Rich & Scarlett
SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

Jim Scott

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Re: This Week 8/30 in the AN World
« Reply #1 on: August 30, 2009, 02:26:01 pm »
Rich & Scarlett ~

It was a pleasure to meet you both at the April AN Brunch in Worcester, Massachusetts.  I hope to see you there again, in October.  Thanks for stepping up to the task of posting the weekly updates.  Your diligence is appreciated by many, including me.

Congratulations to Laura (Allegro 17).  She is truly a marvel and an inspiration to AN patients who are concerned with having an active life, post-surgery.  My wife (Tina) and I also met Laura at the October brunch and enjoyed our chat.  I 'm rooting for her and look forward to finding out how she did.  Of course, simply competing in an Ironman competition is an achievement!

I wish both Mike and Denise great success with their respective surgeries - and few, if any, complications.  I also hope for a smooth finish to McK's FSR treatments. 

Hopes and prayers for a good follow-up for our own award-winning moderator, Phyl.  Finally, a most happy birthday to Saralynn.  Oh, to be a lad of 43 again!  Ah, well.  Enjoy your day, Saralynn!  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Kaybo

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Re: This Week 8/30 in the AN World
« Reply #2 on: August 30, 2009, 02:54:06 pm »
Thanks Rich for doing this!  It takes someone MUCH more organized than I am to keep all this straight - not to mention the time you put in!  Thank You, Thank You!!

Good Luck and Prayers to all that have treatments, tests and birthdays this week...now I can't stand it any longer, I am off to check on Laura!!


K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

wendysig

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Re: This Week 8/30 in the AN World
« Reply #3 on: August 30, 2009, 03:33:15 pm »
Rich,
Thanks for your wonderful update.

Laura -- Good luck and congratulations on feeling well enough to participate in this event.  It is truly inspirational.

Good luck to all having treatments and surgery too. 

David -- If you are reading this I hope your vestibular system is learning to behave itself..  I look forward to hearing how you are doing.

Best wishes to all,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

saralynn143

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Re: This Week 8/30 in the AN World
« Reply #4 on: August 30, 2009, 08:26:40 pm »
Hmm. Either someone played a funny on me and edited my entry, or the software assumed I had made a mistake, because I entered it as saralynn143 birthday. I'm not particularly vain, but I don't go around advertising my age either. Anyway, thanks for the happy messages. I greatly appreciate positive birthday karma.

My prayers are with all of you undergoing tests and procedures this week.

Take care,
Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Keri

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Re: This Week 8/30 in the AN World
« Reply #5 on: August 30, 2009, 10:00:59 pm »
Thanks, Rich for the update and reminders of what's going on.

Thanks also for sending the link to Laura's triathlon and her bib #. That made looking her up so much easier. She did GREAT! YAY Laura! 12:36!

I hope and pray all goes well with McK, Denise and Mike's surgeries/radiation treatment.

Sara, Happy Birthday! Have a great one!

Phyl, we wish you well on your follow up.

Isn't it nice to have the updates before 1:00am? Thanks again, Rich.

Everyone have a great week!

Keri

1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

sgerrard

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Re: This Week 8/30 in the AN World
« Reply #6 on: August 30, 2009, 10:32:43 pm »
Best wishes to all having AN related stuff.

I am amazed by the ironman competition. When I hear about someone running a marathon, it sounds like an incredible amount of effort is required. The idea of first swimming for an hour and a half, then riding a bicycle at 18 miles an hour for six hours, and then deciding to go run 26 miles, is just mind boggling to me. The only thing I have ever done for 12 hours straight is breathe. My hat is off to Laura.

Nice work, Rich. For a caregiver, you do alright. :)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

texsooner

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Re: This Week 8/30 in the AN World
« Reply #7 on: August 31, 2009, 06:20:14 am »
Thanks Rich for the update. Like Steve, I'm simply in awe of anyone doing the ironman competition. I sort of know what it's like to do each of the activities, but I can't imagine doing them all back to back in one day, and at a high level. Way to go Laura...you truly are inspirational. It is amazing for anybody to do this, but especially you having had brain surgery not that long ago and to do this is quite an achievement. You made us all proud.

Patrick
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

ppearl214

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Re: This Week 8/30 in the AN World
« Reply #8 on: August 31, 2009, 02:36:32 pm »
thanks Rich! Great job and you have earned JoeF's dumplin at the next brunch! :D

wellness wishes to everyone having treatments this week... or followups.... or *ahem* 21st burpdays! :D ;)

thanks for my wishes as well... had my head MRI done yesterday (yep, a Sunday of all days) and took a look at the films when I got home. I say nothing but I believe I know what I saw ;)
Be well all!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"