Friday, May 15, 2015

MY CANCER STORY......

  MY #LIVESTRONG CANCER STORY

by Katherine Kilcullen aka "TEAMNANNY"



I am Katherine Kilcullen, & known online as #TEAMNANNY, created by my grandson Isaac who when just 6yrs old put our LIVESTRONG wristbands together & had me promise that we would always be a "team".  Little did he know that his dream of our team would help to inspire so many more to join us on this journey.  This is my story.......

We *ALL*  know somebody affected by this disease!  I had it, my mother had it, my father, my niece, my BEST friends..... too many to keep count anymore!  Cancer has already taken too many of our loved ones from us too soon!
My story has been shared online on my blog, you-tube channel and Facebook – because I believe that knowledge is power and had I been diagnosed earlier I would have had a different outcome. The fact that I even survived surpassed all statistics and my prognosis was grim, outcome I was told was dismal.  I feel that sharing this hope, that if you don't give up on your dreams because of cancer, then you will be stronger for the journey it brings you on.  I am me.  I am not my cancer.  And cancer cannot destroy love and hope.  I respect those who want to keep their cancer story private.  It is a difficult journey and it is not easy to wear your heart out on your sleeve.  But I have learned from other survivors stories that by sharing my story, I will help reduce the stigma associated with cancer, add my face to the 32 million people worldwide, and let people know that you are a not a statistic.  Each person’s treatment plan is personalized, and that we all have the right to patient centered care.  And every survivor needs #HOPE!

In January 2006 I was diagnosed with stage IIIC Uterine Papillary Serous Carcinoma: a rare and highly malignant form of endometrial adenocarcinoma.  My treatment began with a radical hysterectomy, a bilateral aslpingo-oophorectomy, debulking as much tumor as possible, followed my adjuctive therapy which consisted of six cycles of chemotherapy treatments with combined drugs carboplatin (Paraplatin) with paclitaxel (Taxol), followed by thirty five abdo-pelvic radiation treatments, and brachytherapy.  I remember the whole time wondering just how bad this was when everyone treating me was in hazmat suits, protecting themselves from the POISON they were administering to me to kill my cancer cells.  I was about to find out.......
If only it killed just the cancer cells...... I have since had major lupus flares following my cancer treatment, and have life long side effects causing  collateral damage post cancer ..... that will be with me forever.

Chemo damaged my small intestine, radiation damaged my colon and I had four amputations! 
I made educated choices in my treatment plan.  I got the facts on what was the best treatment plan for the type of cancer I had.  I wanted to LIVE at any cost to my future quality of life.  I feel that because the support I received from LIVESTRONG empowered me to be my own advocate, it made a huge difference in my outcome.  I was inspired by other survivor stories, found out what worked for them, and took what I needed from that information and applied it to my own fight. It was a crash course in survival skills 101.  Thank God for the support I received from LIVESTRONG.  You just reach out to them and suddenly you have an army of people who are wanting to help. 
I continue to fight the collateral damage of cancer treatments every single day.  But I am still alive to make a difference! Too many of our loved ones have ran out of time!  Through these heartbreaks we should be inspired to honor the memory of those we have lost and those warriors still fighting by our volunteer work and fundraising efforts!  The LIVESTRONG FOUNDATION was there the moment I was diagnosed until this very day..... I say “Let the yellow shine” on those affected by cancer!  And YOU can help me pay it forward to our loved ones diagnosed today.
*Unity is strength*
 *Knowledge is power*
 *Attitude is everything*
The LIVESTRONG Foundation serves people affected by cancer NOW from the minute of diagnosis and empowers them to take action against this disease that is now the world's leading cause of death. LIVESTRONG has become a symbol of hope and inspiration to people affected by cancer around the world.  
Today is LIVESTRONG DAY!! ‪#‎ILIVESTRONGFOR‬ our terrific Global Livestrong Leaders supporting the mission, fighting to improve the lives of those affected with cancer with their efforts in their local communities in the US and Worldwide.  And for all the supporters of TEAMNANNY's efforts to support the foundation! 


It was my dream to survive the cancer and gain enough health, and do what I could to become a LIVESTRONG leader.  In 2014 my dream became reality!  "UNITY IS STRENGTH" is the truth. Please, join me and #TEAMNANNY, united and help me support the LIVESTRONG Foundation.   I am #STILLSTRONG......  Thanks to my loved ones, and my "yellow family" @LIVESTRONG!  My motto is "Never Live A Life Less Than You Are Capable Of"

Follow us online! We are sharing hope online! Just use the hashtag #teamnanny.  


*Love* & *Light* has been my signature for the past 20 years, and may it continue to help lead you when darkness comes.

*Love* & *Light* has been my signature for the past 20 years, and may it continue to help lead you when darkness comes.

Monday, April 6, 2015

2015 CANCER WALK SUPPORTING LIVESTRONG

TEAMNANNY's 2015 CANCER WALK SUPPORTING LIVESTRONG




NEWS!!! NEWS!!! NEWS!!! 
SATURDAY MAY 9TH 2015 1:00pm
TEAMNANNY's ANNUAL
#OurRaceYourPace
(WALK RIDE RUN SKATEBOARD)
TO CELEBRATE LIVESTRONG DAY

DONATE ONLINE HERE

If you are coming please click join on our event page so we can plan ahead!

#OurRaceYourPace Event Page to RSVP HERE


COMMUNITY GRASSROOTS FUNDRAISING EVENT 
TO CELEBRATE LIVESTRONG DAY 2015


The LIVESTRONG Foundation unites, inspires and empowers people affected by cancer now.  LIVESTRONG provides FREE support services to anyone affected by cancer today! LIVESTRONG has always been there for me during and after my cancer treatments and now #TEAMNANNY with YOUR help will be there to help others with their journey.  "KNOWLEDGE IS POWER"! 

Our team captain Isaac has been fundraising for the cancer fight since he was only six years old.  That is more than half his life!  

ISAAC "To Me LIVESTRONG means #FightWithUs

WE ALL KNOW SOMEBODY 
AFFECTED BY THIS DISEASE! 
CANCER HAS ALREADY TAKEN 
TOO MANY OF OUR LOVED ONES TOO SOON!
 My story has been pretty transparent. I had stage 4 UPSC a rare mixed uterine cancer with a very dismal outcome.  I continue to fight the collateral damage of cancer treatments every single day.  But I am still alive NINE years later  to make a difference! 

TOO MANY OF YOUR FAMILIES AND FRIENDS RAN OUT OF TIME!  

This year alone we have had loved ones diagnosed with cancer, and lost family members.  My daughter lost her grandmother, we lost André's sister, my mom lost a good friend, and my niece after losing her Mom, lost her best friend .  Through these heartbreaks we should be inspired to honor those we have lost and those warriors still fighting by our volunteer work and fundraising efforts!  

And let's remember the "survivors" --- ME and my niece Hailey (my personal hero)......  
Hailey is also the great-granddaughter of my sister-in-law  and so many other survivors will join us in this walk because UNITY IS STRENGTH.


It is easy to make a donation to 
#TEAMNANNY's 
fundraising page HERE! 
This is the map for this years event:..... 
FOLLOWING THIS YEARS EVENT THERE WILL BE A 
POT LUCK SUPPER FOR ALL WHO WANT TO PARTICIPATE.  :) 


Isaac's first cancer walk with Nanny for the Segal Cancer Centre in his underwear raising awareness 
for cancers below the belt when he was only six! 

Thank you! 
"UNITY IS STRENGTH" 
"KNOWLEDGE IS POWER"
"ATTITUDE IS EVERYTHING"

THANK YOU FROM 

#TEAMNANNY





#OurRaceYourPace
(WALK RIDE RUN SKATEBOARD)
TO CELEBRATE LIVESTRONG DAY 2015

DONATE ONLINE HERE

If you are coming please click join on our event page so we can plan ahead!

#OurRaceYourPace Event Page to RSVP HERE


*Love* & *Light* has been my signature for the past 20 years, and may it continue to help lead you when darkness comes.

*Love* & *Light* has been my signature for the past 20 years, and may it continue to help lead you when darkness comes.


Namesté

TEAMNANNY Blog



@teamnanny on Twitter





Monday, March 30, 2015

LIVESTRONG HELPS! I AM VERTICAL!!



HOPE HOPE HOPE HOPE


KILLER WORKOUTS 
AWESOME RESULTS!  


This has been one of the most gruelling weeks of my road back to walking since I began the process in February of this year.  It has certainly been a test of my patience, (which apparently I have none)………  I remember walking on my long legs at the end of October 2013 like it was yesterday, and I want to be that person NOW.  It is hard when you know you are capable and you have to wait, and allow the process to happen smartly and safely.  I am still having issues with my right femur which gives a whole new meaning to “skin on bone”.  There is not enough protection there so we have to carefully create that protection through the process of check sockets!

This photo of my stump completely black and blue from a socket from summer of 2013 - is a reminder of why I switched systems. I injured my elbow in February, and have a torn medial tendon.  I went to back to J.E. Hangers to talk sockets and have my arm properly fixed with a brace to protect it from further injury.   I have been with J.E. Hangers since the early ’70’s with all my leg and back braces, that it feels like home to be back there.  I know my physiatrist Dr. Duranleau was happy to see the progress I had made against the odds and will do anything he can to help me succeed.  He also is clear that drug therapy is not an option for me.  I hate NSAIDS & narcotics.  If I wanted to be a junkie, I would have never agreed to amputate.  The amputations were supposed to extend my life and allow me to lead a better quality of life drug free.  So no drugs at all costs.  
I have enough problems with my colon that hates me from the radiation treatments without adding chemicals.

I knew the statistics of the success of an above knee amputee at my age, with chronic illness (as apposed to a healthy amputee who lost their limbs as a result of an accident).  I knew my Lupus and debilitated body from cancer and treatments would leave me mountains to climb.  
I just had to BELIEVE!  I'll keep climbing.... but sometimes it feels like we are going so SLOW!
Of course every time we were close I was telling my prosthetist “It’s good”.  He would reply, “Yes, but not perfect”.  
My prosthetist knows me so he checked over and over until he was convinced it was good enough for me to try at home.  It is like trying on a new pair of shoes as a child, and you want them so bad, so even if your toes are squished a little, or it is loose a little you tell your parent that they are “good”.  Well a “little” good is not ok when it comes to your long term comfort and performance in prostheses sockets.  Especially as a bilateral above knee, proper fit of the sockets is essential to how well I walk, and what I am able to achieve.  



I finally got the green light to bring them home for a trial period.  There will be places that need tweaking, that is for sure, but we are starting as good as it gets.  Now it is up to me.  




Now I am home with stubbies and starting over again.  It was a concern how I was going to get them off with only one arm since I couldn't push it away while depressing the valve at the same time.  I invented this way.  A rope can fit in my back pack & I can take it anywhere with me & tie it to anything .  I think I a secretly related to MacGyver! ;) 

So we hit another milestone - one that 18  months ago was only a dream, one more thing on my bucket list.  Will my body be able to battle Lupus and handle the weight and effort of the prosthetics?  Nobody knows.  And I don't do maybe's. So I will do what I know how to do well.  I will live in them moment.   I will go “One step at a time” and see what happens.  But it is my hope and dream that this will lead to me also being back in my long legs, and outside all summer gardening, skateboarding my concrete wave, swimming. and walking!!  Eventually running.  Maybe jumping on a trampoline? (Hint hint André) 

I have HOPE that this leg of the journey (excuse the pun LOL) will be a little better than the last.  I am trying my hardest to make it happen.  Eating what I am allowed.  Exercising smartly with a fitness trainer and doing my job in training smart.  

At LIVESTRONG we believe that “Unity is strength, Knowledge is power and Attitude is everything". As a volunteer LIVESTRONG Leader I am proud of the foundations mission and am grateful for the opportunity to lead people to a place that can provide them with free support and services to help them with a cancer Dx and beyond.
Let’s face it - it is not a secret how passionate I am about giving back to a foundation that has given me so much support and inspiration to FIGHT LIKE HELL.  So when you see that great BIG humongous smile on my face as I learn to walk again, remember - MY positive ATTITUDE is a wonderful LIVESTRONG tool when I was fighting for my life.  NOW I fight to improve the lives of others who hear those words…. “You’ve got cancer”.  I am smiling because I know the greatest gift of all is to #PAY IT FORWARD on a global level with my other awesome leaders! 
Want to see me walking up my ramp without giving it a second thought the very first time I come home with the new sockets & stubbies?? I never ever thought I could not do this.  I have ATTITUDE & GRATITUDE! 




If there is one major gift that the friends at the LIVESTRONG Foundation has given me it is the gift of hope.  That I will never suffer alone.  And that they “get it”!  You can’ t always dump on family.  Your family  love you so much that sometimes they want to prevent you from hurting, so they “suggest” that perhaps it is too much.  They take it so personally.  So LIVESTRONG is there for them too.  

  .@LIVESTRONG's support services & online resources are FREE for anyone facing #cancer. http://www.livestrong.org/WeCanHelp  #LIVESTRONGHelps 

(Don't forget to mark May 9th on you calendars to participate in my #OurRaceYourPace event benefiting LIVESTRONG)

*Love* & *Light* has been my signature for the past 20 years, and may it continue to help lead you when darkness comes.

*Love* & *Light* has been my signature for the past 20 years, and may it continue to help lead you when darkness comes.


Namesté

TEAMNANNY Blog



@teamnanny on Twitter





Wednesday, March 18, 2015

A big LIVESTRONG yellow hug from the heart.....


Writing this post is very emotional for me because I have never felt so honoured, or deserving of such a beautiful LIVESTRONG surprise in all these years of struggling to live with what cancer took away from me.  Now I am crying with happy tears for what it gave.  It gave me the gift of hope and love and support like no other.  I so so love being a volunteer LIVESTRONG Leader. 



My doorbell rang this morning. That rarely happens and when it does it is usually one of the kids who forgot their house keys. To my delight it was our mailman with a box addressed to me.  In my excitement I had not thought of checking the return address first,  I just ripped off the tape, and pulled out the most beautiful gift made by a very special LIVESTRONG leader, Peggy Watterson. In the box was a LIVESTRONG Hug Quilt.  Anybody who knows  me knows my love of quilts, but I am sure Peggy did not.  I am in awe of such talent and appreciate all the work involved.  I have NO talent when it comes to sewing.  




 Peggy wrote on her Facebook wall, “I've just completed a LIVESTRONG Hug Quilt...I had planned to pass it on to our local infusion center BUT as I worked on it, I couldn't stop thinking of all the amazing work of all my fellow LIVESTRONG Leaders AROUND THE WORLD! Thank you to all of you for your inspiration! Tomorrow, it will travel by mail to surprise one LIVESTRONG LEADER. And...tomorrow I WILL start one for our infusion center! — feeling thankful.” 

I wrapped myself in it, feeling so loved, and began to just cry, happy tears.  It has been so darn hard to push through these days that I have so often wondered if it were worth the stuggle, or should I just give up?  Well that day I wrote a post to myself that I would never give up. While I was writing it little did I know that this quilt was already in the mail headed to Canada.  








And with the yellow love that I wrapped myself in, totally grateful for every single stitch, I remembered I made it though this journey this far with the support of LIVESTRONG, and this beautiful gift gave me so much strength.  It’s one of a kind! This is truly a special gift, just like the very special lady who made it.  It was so thoughtful of Peggy to send this all the way up here so that I could FEEL the love.   I am lucky to be a LIVESTRONG Leader and especially blessed to have such a wonderful gift that I will keep beside me every single day for the rest of my life.  










Peggy, you are such an inspiration to so many people worldwide.  I will treasure your gift of this beautiful LIVESTRONG Hug Quilt FOREVER.  
And forever I will LIVESTRONG.....

xoxoxoxoxoxo

*Love* & *Light*
#LIVESTRONG


Kath
SO grateful to be a volunteer LIVESTRONG Global Leader! 

*Love* & *Light* has been my signature for the past 20 years, and may it continue to help lead you when darkness comes.


Namesté

TEAMNANNY Blog


@teamnanny on Twitter