Author Topic: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona  (Read 52473 times)

ppearl214

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #180 on: February 05, 2009, 06:34:41 am »
Mary...... hugglez!!!!!!!!!!!!!!!!!!!!!!!!!!    :-*  :-*  :-*

GREAT update... thrilled that things are going smoothly (well, as we know, as smooth as possible)... and thrilled you came with an update.  I know you have your hands full (approaching the same boat as you in parental care) and glad to hear you are hanging tough. You KNOW I'm thinking of you, send the endless huggles and hoping things are going ok.

xoxoxo
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #181 on: March 24, 2009, 05:40:44 pm »
Hello dear people!

One year ago TODAY I received my diagnosis. I reflected this morning about my past year and the ups and downs. I felt such a feeling of happiness upon realizing I am quite content. No, I am not the same. I understand now you learn to adjust even when things are different. My life isn't what I imagined. But in many ways, it is actually BETTER! My canes have taken off and I am very busy. I would have never expected to be doing these canes but I am and I feel good about the help they bring to others and the fun I have doing them.

Once I had gone through the stages of grief and come to acceptance the happiness has grown. I would read under many ANer's bios, "Life is good". Now I feel that feeling and appreciate life and the joys I am blessed to have. For those of you out there who are struggling with your new realities, I can say you will get there and I am cheering you on as I was cheered on. THANK you everyone for helping me get to this point.

Big hug to all,

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

ppearl214

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #182 on: March 25, 2009, 02:59:40 pm »
Mary! OMG!  :o  I can't believe its been a year... when, honestly, it does feel like yesterday that I was helping to welcome you here.  Congratulations for achieving SO much in 1 yr.... you have done, conquered, moved on and do the best you can... and honestly, I am so thrilled to see how much you have achieved in such a short period of time.

Congrats to you. Continued wellness wishes... and you know I send the hugglez.

xoxo
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #183 on: March 25, 2009, 07:06:02 pm »
Hi Phyl! :)

You have helped me sooooooooo much get through this year. Can't wait to meet you at the symposium. I owe you a huge hug! You are a fabulous cheerleader.

Thank you so very, very much!

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

sgerrard

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #184 on: March 25, 2009, 11:59:29 pm »
Mary,

Congratulations on 1 year from diagnosis. Soon it will be your treatment anniversary. How time flies when you are having fun;D

I am so glad to hear that life is good. May it always be so.

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.

cindyj

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #185 on: March 26, 2009, 05:29:00 am »
Hey, Mary!  So glad to hear from you and hear that things are good for you!  Great that your canes are doing well also :D  That really was such a clever idea!

We are still cheering YOU on, Mary!  Take care,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Kaybo

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #186 on: March 26, 2009, 06:26:28 am »
Mary~
So wonderful to hear from you - I was just thinking about you the other day!  Glad things are going well!

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!

leapyrtwins

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #187 on: March 26, 2009, 02:31:44 pm »
Mary -

sorry I missed your 1 year anniversary, but I'm so glad to hear things are going well.

I checked out your canes on ebay a couple months ago; they are beautiful.

See you at the symposium  ;D

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #188 on: March 26, 2009, 02:40:36 pm »
Mary ~

A belated but sincere Happy 1-year Anniversary wish. 

Your positive outlook is downright inspiring and your 'AN story' a valuable example of how to navigate the storms that often accompany this relatively rare medical challenge.  Thanks for being a valuable member of these forums and may even better days lie ahead as you enjoy your well-earned 'good life'.  :)

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.

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #189 on: June 02, 2009, 10:19:48 pm »
Hi all,

To those of you dear people following my thread......I appreciate you and your support. March 24th was my one year anniversary of diagnosis and TODAY is one year anniversary of treatment. A year ago I never would have believed I am where I am today.

I really want to share with those of you newly diagnosed, and pre-treatment - there is life after treatment. I want to stay in touch here and hope upon hope I wilolo still go to the AN conference I have reservations for.

Here is a quick one year snapshot!

1. I am still having balance issues although I am coping 95% of the time VERY well by just having adapted to the fact it is there. I tell people via my newly learned "piratitude" I have developed good sea legs.

2. I still have the loud shrill ringing, but it I have learned it is just there, like allergies.

3. I still have the word recognition issues and loss on the right side. Also the full ear feeling. BUT I have learned where to sit at a table, how to walk with friends and what things to just plain avoid!

4. I still seem to be worse with hand eye coordination, I still at times have trees jumping when riding in cars and other vision "weirdities" but realize I am lucky to have my taste  and am able to smell the roses.

5. My hands are still shaky but I have a new outlet for my creative juices.

6. My memory is worse, but I am happy, so everyone has issues.

7. I still have swooshes and zips through my head and occasional headaches, but I have new friends and insight.

Now for the good news:

1. I am alive and HAPPY!

2. We have my mom almost 89 and Weldon's dad almost 94 now both living with us. They have challenging issues that help put my issues in perspective. I feel like we are doing something good in the world for people who have earned this by being such outstanding role models.

3. Never, ever would I have expected for a huge change in my personal direction to be initiated by this tumor diagnosis. I am still pursuing my Artzy cane business and have so much fun, it should be illegal. I am dead tired at night. My dear friend has partnered with me and my husband is now heading our little business full time. I owe this to this group and the support they gave me through my most difficult times.

4. I have the most amazing family, especially my husband who has helped me through the darkest times and endured so much of my grumpiness, complaints and gear shifting troubles. We look to our 40th WEDDING anniversary July 5. Hooray!

Yes, I do have bad days, yes, I do get discouraged at times but overall I want to say to all you that are unsure what lies ahead. I encourage you to try to find your new path. No, it may not be the old one, nor the one you had planned, but if you watch, there is a reason. It may be a better path with more enrichment.

Last I want to apologize for not staying in closer touch. I do care about you all and will be checking the site. Please excuse me if it takes awhile between messages. I am pedalling as fast as I can - and ENJOYING the ride!

Hope to see some of you in Chicago.

Hugs,

Mary


Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

ppearl214

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #190 on: June 03, 2009, 05:59:48 am »
Ya know, my dear Mary, I was wondering if you were going to show up and give us your 1 yr anniversary update! I am SOOOO glad you did!  :-*  :-*  :-*

MAJOR congrats to you and how you are doing. Yes, I know you still deal with issues but your mental strength, your resolve... your courage is to be commended! I am SO very proud of you and I can see that life is certainly moving on for you!  MAJOR congrats on your upcoming 40th! :o wedding anniversary and Mary.... I will FINALLY get to give you that personal huggle as I will also be in Chicago! :)

MAJOR congrats and thank you SO much for the update.  The updates are so key to newbies here as they research decision-options and knowing outcomes like yourself certainly help the cause!

Happy 1 yr of the booger being done.... you speshal Pirate! ;)  :-*  (btw, will you be wearing your CK Pirate outfit in Chicago? :D )

oxoxox
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kaybo

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #191 on: June 03, 2009, 07:08:58 am »
Mary~
My Round Rock friend - SO glad to hear from you!  Congratulations on your 1 year Anniversary and your GREAT outlook on you New and Improved life!!  Can't wait to meet you in person in Chicago!! ;D

K
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!

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #192 on: June 03, 2009, 08:59:45 am »
Hi Kay and Phyl,

So good to hear from you two. I also can't wait to meet in person - big hugs are due to both of you! You were invaluable to my progression. I hope all is well in your worlds. We will be in central TX in early July (our anniversary trip) to repair, clean sell stuff, recarpet, paint and sell Weldon's dad's home. This will be our strangest anniversary but we get time alone together so that is worth millions!

Till next time, BUG hugs,

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

sgerrard

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #193 on: June 03, 2009, 09:10:34 am »
Hi Mary,

Thanks for a great update. I love your lemons to lemonade view of life after AN. I think it is great that you and Weldon are taking care of the "old folks"; that should keep you feeling young at heart!

Best wishes, have a great time in Texas, and am looking forward to seeing you in Chicago.  8)

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.

Kaybo

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #194 on: June 03, 2009, 09:23:30 am »
"BUG" hugs??  Are you going to squeeze us until our eyes bug out??   ;D

K
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!