ANA Discussion Forum

Post-Treatment => Post-Treatment => Topic started by: ppearl214 on April 10, 2009, 08:25:07 am

Title: 3 yrs Post-CK and thriving!
Post by: ppearl214 on April 10, 2009, 08:25:07 am: Ok, had to do this... I usually try to do a full update once/year .... so, it's time to share this with you all.

Today is "Good Friday". Exactly 3 yrs ago today was "Good Friday" (April 7) and it was my last of 5 days of CK treatments at Beth Israel in Boston (a very Good Friday, indeed). I brought an Easter basket, filled to the rim with sugar-highs for my CK team to share (made sure they didn't eat any first before they started to press any ole' CK button... :) )

I now sit here, 3 yrs later and have to think back about this dramatic event in my life. I have to sit back and really think about all that I have achieved since my AN treatment.

--I have never regretted my decision.
--I went with my gut.
--I have faith in what I have done.
--I pray each day that my "brain booger" (yes folks, I coined that around here, but you can still use it ;) ) dies a fugly death.
--I stay on this site, unlike many that have had CK and just move along in life, to help give back since SO many here at the time were truly a G-D-send to me when I needed it most.
--My hearing is intact, same as before the CK.. thus, my personal goal was met.
--The love and support that my friends, my family, my "AN" family has given me truly humbles me. I am ever so grateful.

3 yrs later, I can sit back, knowing the docs have deemed me a "done deal" and know I did what was best for me and my situation.

I don't need to be here. I can just carry on in life. I can just move along, forget about my AN as a "blip" in my life and just focus now on other issues in my life.

But, I don't.

--You all have given me such mental strength and love that I have never felt before in life.
--The friendships I have forged here are so very very dear to me.... I am truly blessed.
--My heart feels the need to give back... to try to help those that now begin and endure their new journey in life.
--Folks have noted to me about the time and energy I put into Moderating here... or organizing brunches... or spending time on the phones for the WTT list.... or emails... or time spent in helping others with brain tumors (all kinds, not just AN's)..... and you know what? There is more for me to give.

I am doing fine! I know I did what was best for me and I knock on wood every day that it has paid off.

--I live, I love, I laugh (ok, I truly laugh at many of you here, but heck, some of you deserve it!) ;)
--I forge and push myself as hard as I can.
--Since treatment, I have a renewed energy and love of life.

I thrive...

and I thank you all!

Wellness wishes to you... many hugglez as well! I'm thrilled to share a 3 yr journey with you in the hopes that it helps to inspire some that you, too, can forge forward, regardless of what AN decisions you make for you.... and even for those that options are not available, I send you love and energy and hugglez.

You all rawk! Thank you for over 3 yrs of being there for me...

Next update in 12 mos! :)

xo
Phyl
Title: Re: 3 yrs Post-CK and thriving!
Post by: yardtick on April 10, 2009, 08:50:50 am: Beautiful

Thank you for continuing to be here for us. I just wish I was able to attend one of the brunches ;) If you are ever up in the Toronto area dinner is at my place.

Thanks Phyl,
Anne Marie OXOX
Title: Re: 3 yrs Post-CK and thriving!
Post by: sgerrard on April 10, 2009, 09:11:44 am: Must reply to boss's post. ;D

Phyl, I think for many of us, you define what this forum is all about. We have a lot of great contributors now, who keep it going every day and make it the lively and rewarding place it has become. But you were the one who steered it through some shakier days, and shaped it into the safe haven that now means so much to so many. Thank you so much for all you have done. It would not have happened without you.

And congratulations on reaching the 3 year mark safe and sound. Best wishes for year number 4.

Steve
Title: Re: 3 yrs Post-CK and thriving!
Post by: EJTampa on April 10, 2009, 09:27:53 am: Hi Phyl!

Even though you are the only one here that yells at me ;), I must say that by now you have given back WAY more than you have received from here. So many people reach out to you for answers, and you are always there for them. One of the first things I noticed when I found this place was that your face was there in pretty much every topic on the board! That's a lot of time and a lot of caring. Where would we be without your hugglez?

Thanks for what you do, and congratulations on your 3 year Good Friday anniversary!

Ernie
Title: Re: 3 yrs Post-CK and thriving!
Post by: Jim Scott on April 10, 2009, 11:12:39 am: Phyl ~

Thank you for your poignant, heartfelt post describing your AN journey and the motivation for all you do, here and elsewhere. Well done.

I probably wouldn't still be posting here, much less, be a moderator, if it weren't for your inspiration. I think all of the mods look to you as a leader, based on your experience and example of dedication. I believe the moderators and many of our 'regulars' have a very similar motivation; to share, help, inform and support other people dealing with this relatively rare medical crisis that can have such devastating and long-lasting effects on AN patients and their families. Your example helped set many of us on the path to helping others through this website and the forums and for that, we owe you a profound debt of gratitude. You've touched many people and accomplished much.

I'm delighted to learn of your 3-year MRI results and your obvious joy with that news as well as your urge to do even more. You're an amazing lady and we're happy to have you here. I look forward to seeing you again in just over a week, at the April 19th AN Brunch in Worcester. :)

Jim
Title: Re: 3 yrs Post-CK and thriving!
Post by: cindyj on April 10, 2009, 11:24:45 am: Thriving, you are!!! And helping others learn to thrive also, despite their situations. And, of course, it meant SO much to me to meet you last Spring! (Hope you get back soon, too...)

Know you deal with a lot in your life, but I'm very glad that your AN, at least, is no longer causing you problems or concerns.

Thanks for sticking around - many hugs to you,

Cindy
Title: Re: 3 yrs Post-CK and thriving!
Post by: Captain Deb on April 10, 2009, 01:22:56 pm: Death to the Brainbooger! Yeah!!!!

Way to go Phyll! Thanks to you for being here for the rest of us and your tireless efforts to make the AN World a better place.

Love and Hugs,

Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-smiley-12.gif)
Title: Re: 3 yrs Post-CK and thriving!
Post by: mk on April 10, 2009, 06:43:10 pm: Phyl,

Thanks for the upbeat and encouraging update. Also thanks for always beeing here, with words of confort and encouragement for everyone, and especially newbies who really need it!

Marianna
Title: Re: 3 yrs Post-CK and thriving!
Post by: Vivian B. on April 11, 2009, 03:32:02 pm: Hi Phyl,

I am so glad for you. Thank you for all your support in time of stress and confusion. You have really been there always replying and sharing your thoughts.

Vivian
Title: Re: 3 yrs Post-CK and thriving!
Post by: Tumbleweed on April 11, 2009, 09:24:37 pm: Heartfelt congratulations, Phyl, on your success story, and many thanks for giving back to this community. The difference you are making in a lot of people's lives is wonderful and admirable. It's people like you that make this Earth a better place.

Sincerely,
Tumbleweed
Title: Re: 3 yrs Post-CK and thriving!
Post by: Brendalu on April 12, 2009, 06:44:59 am: Phyl,

Congratulations!! You "rawk"!!

Huggles and Hugs,

Brenda
Title: Re: 3 yrs Post-CK and thriving!
Post by: leapyrtwins on April 12, 2009, 08:59:51 am: Phyl -

like Steve said, you define what the forum is all about. Your dedication is amazing - as is your strength. I've learned a lot from you over the years and look forward to learning even more in the years to come.

I'm so glad you are thriving and I'm looking forward to meeting you in person at the symposium in August.

Jan
Title: Re: 3 yrs Post-CK and thriving!
Post by: macintosh on April 12, 2009, 11:49:41 pm: Hi Phyl--

It's great to hear of your progress, and I want to chime in with what others have said about what you've given us.

Through the time and energy that you've put into this board, you've sustained something that has given countless numbers of people (including me) the resources we've needed in some of our bleakest hours. We all hope we've been put on this earth to make a difference. You've accomplished that.

Thank you.

Mac
Title: Re: 3 yrs Post-CK and thriving!
Post by: ppearl214 on April 13, 2009, 07:44:42 am: humbled folks... truly! Wasn't looking for the nice words you all have shared... but just to let know folks that for some, life can move on beautifully as I have been blessed. But, this was also to note that even things have not gone as hoped post-any-AN-treatment, we can gain strength by numbers... and know that even if our outcomes are not as planned/hoped, others are here to help along the way... which is what each and every single one of you do.... and I thank you all!
Title: Re: 3 yrs Post-CK and thriving!
Post by: Mickey on April 13, 2009, 09:33:32 am: Hi ppear! Very happy to hear about your 3 year experience with CK. Very happy that its turned out so well. This is also great for all of us looking to someday being treated. Another breath of fresh air with optomism in treatments for
Acouistic Neuromas. Also thankyou for your commitment to this wonderful board! Best Wishes, Mickey
Title: Re: 3 yrs Post-CK and thriving!
Post by: anissa on April 13, 2009, 10:29:29 am: Phyl, congrats on a great 3-yr. post CK checkup, wonderful news! I haven't been here a long time but long enough to say this place wouldn't be the same without you!
Title: Re: 3 yrs Post-CK and thriving!
Post by: FlyersFan68 on April 15, 2009, 08:10:01 am: Great News! Even though we have disconnected ourselves with our "intruder" we will forever be connected to those here on this board. We may not have all walked the same path but we're all in the same park. It's nice knowing that people not only get one response today but oftentimes many more. :)
Title: Re: 3 yrs Post-CK and thriving!
Post by: Sheryl on April 15, 2009, 06:12:49 pm: You're wonderful on the board and on the phone but even better in person!!! Larry and I (spouses both with brain tumors) thank you for always being there and we are so happy to hear about your third anniversary. Brunch April 19th???!!! Geez we snowbirds fly back on April 21st - we'll try to bring the warm weather with us.
Sheryl :-*
Title: Re: 3 yrs Post-CK and thriving!
Post by: Dealy on April 16, 2009, 09:16:40 am: Phyl- You were always one of my steady ROCKS when I was dealing with my AN and Radiation. I am so happy and glad to hear and read about your success. I am also coming up to 3 years in July. I still do not regret my decision no matter what the outcome. The only thing I miss is my hearing and I still have days where my face burns and the fullness. Realize I am not complaining just the facts. I do not post on this site like I used too. I guess like youi- I just want to get on with my life and forget of ever having another AN in my life. However- I"m afraid being an NF2 that might be alot to ask. Anyway Phyl- I will always consider you one of my friends from this site even though we may never meet face to face. You always showed compasion and caring with my e-mails. God Bless You for the person that you are. We have a lady at work that every day I see her she smiles and says Hi and waves-always so friendly. I told her she was a breath of fresh air in this life. Most people act as if they could care less about other's etc. Phyl-you are that Breath of Fresh air in one's life. Thanks Forever-Ron.
Title: Re: 3 yrs Post-CK and thriving!
Post by: ppearl214 on April 16, 2009, 09:28:15 am: -Mickey: thank you! Truly! That means a lot to me! :)
-anissa, my new AN/CM1 sista in life..... so glad to have you here and wellness wishes right back atcha! Hang tough!
-Flyer'sFan... oh, you know how I feel and and we all walk that walk together! I'm right there with you! :)
-My snowbirds! Gah! You are coming home JUST after another one of the brunches! BAH! Will see what we can do to check on you and that lovely spouse of your's. You KNOW I'm sending the wellness wishes and hoping my CK team gives you all the same results as me... "done deal". Keeping all appendages crossed for that news! xoxoxo
-Ron... oy.. what do I say? I can't believe its almost 3 yrs for you as well! A long road, eh? I'm so glad you pop up here from time to time and say "hi". You are sorely missed! You hang in there and I thank you for that "breath of fresh air"... honestly, I'm blushing... thank you.

I thank everyone for the well wishes and nice words. Like I said before... if it weren't for you all... my job around here would just be a job... you all make it a great job! I thank you!

Humbled... truly.
Title: Re: 3 yrs Post-CK and thriving!
Post by: Kaybo on April 16, 2009, 10:05:19 am: Phyl~
OK - HOW did I miss this?? maybe being sick for a week and then going out of town had something to do with it!? CONGRATULATIONS on your 3 year Anniversary! You stated so beautifully exactly what this Forum means. Just like you...I don't "NEED" this - & I'm sure Dave would say I spend too much time on here - but I want to try to help others. However, I could never do all that you do to help so many!!

LOVE YOU!!
K
Title: Re: 3 yrs Post-CK and thriving!
Post by: leapyrtwins on April 17, 2009, 06:32:48 am: Quote from: FlyersFan68 on April 15, 2009, 08:10:01 am
Great News! Even though we have disconnected ourselves with our "intruder" we will forever be connected to those here on this board. We may not have all walked the same path but we're all in the same park. It's nice knowing that people not only get one response today but oftentimes many more. :)

Very nicely put, FlyersFan. One of those things that I wish I would have said :)
Title: Re: 3 yrs Post-CK and thriving!
Post by: Anomar11 on April 21, 2009, 07:42:09 pm: Phyl,

Thanks for the update. You have been a true inspiration and help to many. I love the term "brain booger". Wishing you continued thriving in all areas of your life.

Mona
Title: Re: 3 yrs Post-CK and thriving!
Post by: ppearl214 on April 23, 2009, 02:15:54 pm: Mona.. thank you! and passing the "done deal" torch to you and so many other radio patients that are also waiting for the same news (from my mouth to G-d's ears).

Hang in there.. and thank you again!
Phyl
Title: Re: 3 yrs Post-CK and thriving!
Post by: MLB57 on April 26, 2009, 07:18:23 am: ;D Hi Phyl,

You are the glue that holds our group together!! I know if I ever need a sympathetic ear that you are there... My journey has been more eventful than others and easier than some but through it all it is so good to know we have this site and people like you who can understand our plight and cry and laugh with us... 8)

Congratulations on your anniversary!! It bodes well for all of us, too, who have had radiation!! ;)

Love ya and thanks for being you!!! ::)

Regards, Mary (aka GrammyMary) :-*
Title: Re: 3 yrs Post-CK and thriving!
Post by: Larry on April 26, 2009, 08:37:05 pm: Hey girly,

As every postie will testify - you are an inspiration and you deserve good fortune. As i have told you time and time again and will continue to tell you - you are a special person.

Laz
Title: Re: 3 yrs Post-CK and thriving!
Post by: ppearl214 on April 29, 2009, 08:48:37 am: GrammyMary! :-* :-*

Laz.... :-* :-*

its folks like both of you that make this worthwhile!

sending wellness wishes to everyone! I've seen a lot of posts lately about terrific follow ups going on (ie: clean MRI's, death to brain boogers, etc). We're on a roll... let's keep it going! :)

Phyl
Title: Re: 3 yrs Post-CK and thriving!
Post by: Sue on May 24, 2009, 07:18:35 pm: Wow, my bad, I'm late to this post. Phyl, you also rawk, my dear. Thanks for all the advice and support you've given to everyone, including me. You are "da bomb"!

Huggles from across the country,

Sue in Vancouver USA
Title: Re: 3 yrs Post-CK and thriving!
Post by: ppearl214 on May 25, 2009, 06:42:03 am: Quote from: Sue on May 24, 2009, 07:18:35 pm
Wow, my bad, I'm late to this post. Phyl, you also rawk, my dear. Thanks for all the advice and support you've given to everyone, including me. You are "da bomb"!

Huggles from across the country,

Sue in Vancouver USA

Oh, no worries Sue... you are my "radiation" twin, being treated approx same time as me.. and we've gone through this together.... and so thrilled that you are doing well too! :) YOU rawk! :)

xo
Phyl
Title: Re: 3 yrs Post-CK and thriving!
Post by: tsl on May 26, 2009, 12:16:28 pm: Hi Phyl,
Belated congratulations on your 3-year happy anniversary! As I have told you many times, I'm indebted to you for all your help, humor, and knowledge that you've shared with me. I still remember the first words that you spoke to me: "We are going to get you through this." You gave me hope and support when I was lacking and feeling so overwhelmed.

Take care,
Theresa (tsl)
Title: Re: 3 yrs Post-CK and thriving!
Post by: ppearl214 on May 26, 2009, 02:33:16 pm: Quote from: tsl on May 26, 2009, 12:16:28 pm
I still remember the first words that you spoke to me: "We are going to get you through this."

You remembered... and you just put a very warm smile on my face. Theresa... thank you. Truly! :-* I am very, very proud of you... you have truly come a long way and thank YOU for ALL you do for AN'ers... :)

Phyl
Title: Re: 3 yrs Post-CK and thriving!
Post by: ppearl214 on September 03, 2009, 02:34:57 pm: well, JKL will enjoy this. I moved my own thread to Post Treatment forum :D

Update:

today, I had my 3-1/2 yr follow up with my radio team at Beth Israel. Found out some news I didn't know.. and news I already knew :)

1. Was informed today that my AN was actually touching my brainstem at time of treatment. :o :o Actually, for me, I'm glad I found out after-the-fact!
2. Hearing still at same level as pre-CK. Everyone at BI is thrilled serviceable hearing same as pretreatment and was saved (my personal goal in choosing CK)
3. AN was touching brainstem pre-treatment.. and now it isn't (nice gap it's got going), thus, further AN shrinkage (now stablized at 8mmx6mm) since treatment.
4. Radio-onc feels that based on my AN today.... it has "plateaued" (how DO you spell that?) in its reaction to radio/CK and should not do anything further from this point onward.
5. Sucker looks dang necrotic :)
4. They acknowledge they owe me dinner and drinks for being their AN CK poster child.

For me... it's done. Yes, will see them same time/same place next year but as of now... my AN journey has officially ended. They do not forsee any further hearing issues etc due to the AN.

I'm done.

I'm blessed, as I know there are many that do or do not follow in these footsteps, but know that my determination to be here for all those enduring an AN journey does not end. I pray that there will never be another AN in my head (G-d willing) and I remind myself that each medical journey (regardless if AN, Cancer, broken bones, etc) is so very unique onto itself.. and I don't take my good news lightly, as I know there are many that do not have such great news provided. But, the good news for all of us is this... we are here. We are on this good green earth, here for each other. And regardless of my outcome or other's outcomes, we are here for each other and that, to me, is the greatest blessing of all.

For those that have been here since 2005 when I began my AN journey and for supporting me the way you have... I very humbly say a BIG thank you. And for new found AN "family", I remain here for you as well.

Wellness wishes to all. Just wanted to share the news. I'm overjoyed, overwhelmed... and now, to get the rest of me fixed and back on track.

Hugglez to everyone!
Phyl
Title: Re: 3 yrs Post-CK and thriving!
Post by: Kaybo on September 03, 2009, 03:33:10 pm: GREAT NEWS, phyl!

love ya!
k
Title: Re: 3 yrs Post-CK and thriving!
Post by: Jim Scott on September 03, 2009, 03:58:02 pm: Phyl ~

Wow! 'Congratulations' seems too mild to express the happiness I'm feeling on reading your fantastic 3Â½ year post-treatment results. Bravo! May you continue to thrive - and hang around here a bit longer. :)

Jim
Title: Re: 3 yrs Post-CK and thriving!
Post by: nancyann on September 03, 2009, 05:01:06 pm: Wonderful news Phyl, couldn't have happened to a sweeter person ! !
Always good thoughts, Nancy
Title: Re: 3 yrs Post-CK and thriving!
Post by: Sheryl on September 03, 2009, 08:14:46 pm: WOWEE!! We are both so happy for you. Too bad we couldn't have "arranged" our Boston visits together.
Warm wishes,
Sheryl & Larry
Title: Re: 3 yrs Post-CK and thriving!
Post by: Mark on September 04, 2009, 12:02:54 am: Phyl,

congrats on a terrific update report!

Great outcomes are always wonderful to hear, but even more so when they happen for someone as special as you who gives so much encouragement and support for people on this forum.

As they say "you rawk" :D

Mark
Title: Re: 3 yrs Post-CK and thriving!
Post by: yardtick on September 04, 2009, 07:31:29 pm: Inch by inch and day by day..............you made it GIRL ;D

Anne Marie :-*
Title: Re: 3 yrs Post-CK and thriving!
Post by: ppearl214 on September 04, 2009, 08:44:47 pm: thanks all! Truly! And Sheryl, I wish I had known as I was at B/W today meeting with Dr. Claus for a different reason but she took a look at the AN and was absolutely tickled the way it looked. Was great to see her smile about it.

Yes, dear AnneMarie... "day by day, inch by inch...".... I hold true to my mantra and it certainly has helped me many a day when things get rough. Hugglez to you! You know it!

thanks again all for the congrats. I really appreciate it.

Phyl
Title: Re: 3 yrs Post-CK and thriving!
Post by: hevreh on September 05, 2009, 01:12:28 pm: Hi Phyl;

Your journey inspires us and was a key factor to follow your lead. Glad to learn our docs at BIDMC find you a done deal!!
Title: Re: 3 yrs Post-CK and thriving!
Post by: cindyj on September 07, 2009, 08:29:02 am: Awwww, Phyl, great to hear that "official" news from your docs! Thanks for sticking around for all of the rest of us :-*

Cindy
Title: Re: 3 yrs Post-CK and thriving!
Post by: ppearl214 on September 07, 2009, 05:49:58 pm: thanks all for the wishes... and yeah, you're kinda stuck with me now! :)

Phyl
Title: Re: 3 yrs Post-CK and thriving!
Post by: Larry on September 08, 2009, 08:46:03 pm: Been off the forum for a while but thats great news girlie.

Laz