#TEAMNANNY

TEAMNANNY videos on You Tube (Walking and Skateboarding)

Dakota's Story on Facebook

DAKOTA'S STORY - SPCA 2 SERVICE DOG ON YOU TUBE

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 videos on You Tube (Walking and Skateboarding)

Dakota's Story on Facebook

DAKOTA'S STORY - SPCA 2 SERVICE DOG ON YOU TUBE

Saturday, March 14, 2015

HOPE LIVES!

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

Namesté

TEAMNANNY videos on You Tube (Walking and Skateboarding)

Dakota's Story on Facebook

DAKOTA'S STORY - SPCA 2 SERVICE DOG ON YOU TUBE

Thursday, February 19, 2015

2015 - The Road Back - Giving It All I’ve Got (and then some).

Yes I still want a trampoline for my birthday!!! :)

I am going to begin this blog entry with some facts on energy expenditure of amputees because without an understanding of what it takes to be able to use prosthetics as a BAK (Bilateral Above Knee) amputee it is difficult to understand my achievements and goals. It is not just about the balance & the movement & not falling on your face, albeit gracefully as one friend on a beach once put it. Before I put any emotion and my own thoughts into todays blog I just wanted to share with you a few of the more interesting easy to understand facts on energy expenditure using prosthetic legs.

Leg amputees tire more quickly than their able bodied peers because an amputee who walks same distance as a non-amputee will have a higher level of oxygen consumption —-amputees vs non-amputees indicate an increase in oxygen consumption for:

• below-knee amputees from 9% to 20%

• above-knee amputees from 45% to 70%

bilateral above-knee amputees up to 300% (I am in this group)

This increased oxygen consumption is the reason amputees seem to get out of breath much more quickly. They need more energy to do tasks - even simply walking across a room requires more oxygen. The higher the level of amputation, the more energy required to walk. Just an upwards slope in the terrain of 10% doubles the energy required, and a 20-25% slope triples it. Carrying any weight (shoes, boots, gear) add another 40% on top of the already given 300-400%.

THE ROAD BACK……

I can't believe the winter is almost over and we're heading into spring although it doesn't look like it outside right now at the moment with snow falling & the level still nighter than my bedroom window sill, it will all be gone in time for my birthday in May (where I really hope to have a trampoline set up in my back yard) & for my Teamnanny’s second annual grassroots event supporting the LIVESTRONG Foundation.

I am proud of my accomplishments over the past 12 months. My time was not wasted. I did fulfill my obligations as a volunteer LIVESTRONG Leader, and I did train Dakota to be the awesome service dog that he is. I did manage to do a lot of things, but nothing ever comes easy in my life.

This spring I set my sights high. At the beginning of 2014 I was very angry at having to give up walking after spending months of rehab getting myself vertical and accomplishing what too many professionals said was the impossible, walking, and ever more impossible, walking unaided But I had friends who had accomplished this! So why was it so bloody hard for me? I think one of my amputee role models ED put it best. I am a hybrid. I am not just an amputee. I am an amputee who also battles chronic illness daily.

If I was “just” an amputee by “accident”, with no other major health challenges, I am sure I would be out running marathons with my little brother Danny by now. After all my first miracle of 2002 before my cancer dx had me headed that way! But my reality is that I live with Lupus, and all the collateral damage my cancer treatments did to my body. I did survive my cancer, but I will live with the damage of side effects of the treatments for the rest of my life. I don't like this, but I must accept it to move forward.

At rehab in summer - fall of 2013 I had awesome physical therapists along with a super prosthetist, and I did the unexpected. I walked, unaided. I passed the tests. Unfortunately the “kit” of prostheses that I was approved for at rehab was not the correct one for me and my “condition”. I know this frustrated my team because I had so much potential. I was approved for my second knee though, in great thanks to my physiotherapist report, after numerous refusals. I was (and still am) under limitations of medicare, because we have no medical insurance. Any extra pieces that I needed we had to pay out of our fixed income, or ask for help from family, so I was screwed. My family does not have those funds. None of my friends do. I somehow always knew that I would have to earn sponsorship.

As I watched the people with insurance get better ‘kits’ and I knew I had to make do with what I could afford. On top of this I required help from my physiotherapists, or André to don the type of prosthetic sockets they built me. André needed his second shoulder replacement surgery, so he could not help me put on my fibreglass contact sockets after I left rehab which were put on with parachutes which required great effort in pulling. Neither one of us had that shoulder capability . So I went through the rest of last winter & last spring and summer using my power wheelchair. My body hated me giving me all kinds of challenges. I wasn't happy. I was barely able to do any of my new skills I had accomplished, even swimming and skateboarding was beyond my ability at the time because of my difficult “hybrid” body. I barely made it to Austin and back, we survived my sweetheart's second shoulder replacement surgery and moved on.

I was happy and extremely blessed that I wasn't in the kind of pain anymore that I had been in for 40 years. Before the decision to amputate, I had lost the dynamic ability in my legs that were braced to have zero mobility, they were uncomfortable and painful, so I was heavily using narcotics 24/7. I decided to amputate to free myself of uncontrollable pain and agony, and the damage that narcotics were doing to the rest of my body. Since the amputations I take no narcotics, and am more mobile than ever, even without prosthetics.

So why this push to be back up vertical so badly now??

The answer is pretty basic. I am not happy that my wheelchair gets stuck in grass in my own yard and was extremely anxious of this happening away from home. My wheelchair’s inability to work on anything than concrete outside put me in constant risk of being trapped, and alone. I could always get down and crawl away, but really? I am a passionate gardener. I love what we have done to grow our property. But I can only enjoy it crawling. My wheelchair always gets stuck.

So as we began this new year, I realized that my body wasn't going to get better so I just had to get more adaptive with the health challenges that did not want to leave. I had to work out harder. I had to lose the anger and gain more mental strength. I had to stretch and I had to push to the very limit of my body’s capabilities. All in preparation to start again from the beginning with new sockets that I could put on by myself without the help of Andre. I waited out my medicare mandatory one year at rehab, and manned up and made the call to Benoit who was my prosthetist before the second leg came off. He told me he could make me a kit that I could manage on my own. I would walk again, not because I am just stubborn and have something to prove. No. I will walk again because I want to go where my motorized wheelchair cannot go. I wanted to be able to walk through dirt and mud different types of terrain, because getting suck in that damn chair during the few months that we can actually be outside frustrates the hell out of me. I want to play at the park again with Cassidy and her brothers. I want to go where my chair can’t. I am very proficient without any legs and there isn't anything I cannot accomplish, if I try. But I cannot make my wheelchair work where it will not work. The chair sucks. I do not.

Since injuring my shoulder and back in 1998 I have not been able to push a manual wheelchair without excruciating pain. This injury mostly due to the osteoporosis I had at the time is in operable and therefore I've been receiving cortisone injections in that area of my back and shoulder blade for the past 17 years. This is not the same movement that I am able to manage when on my skateboard. The manual wheelchair is the first and most important job of Dakota, so that I may remain independent. I *hate* being pushed. HATE it. Had to let myself be pushed lately with my arm injury and no matter how I tried, I could not put a positive spin on it.

The balance of training and excepting my body’s physical limitations is a very thin line in my world of living with my numerous health challenges. I want to walk to be complete. Technology is out there. We may not be able to ever afford it, but someday some sponsor may want to help. I can hope. When we learned that my prognosis of survival was only 10 months I knew at that moment that statistic was based on other peoples journey’s with my cancer pathology. A statistic is simply a guess of the accumulation of other people's achievements and failures - not your own. You do not have to be that statistic. Be your own statistic. Be your own hero. Believe in yourself. I did and this year we will turn those “months” into “9 years”.

Presently I am a bilateral above knee amputee with a braced right arm (my dominant one to boot), living with Lupus and numerous health problems. Perseverance, determination and attitude will get me where I want to be. My constant health challenges will be my enemy. One that I am familiar with. One that I have overcome in the past. I was discouraged by the added challenges of this past year. I will not lie. I was disappointed. I had lost sight of my own motto. But anger and disappointment turned into unparalleled optimism. Giving up & being handicapped is not an option. I am clear who is watching me. I will show them. They call me “Nanny”. They love me “just the way I am”.

Now I am on yet another journey. I have named it “The Road Back”. Whatever shape or form that takes, this is what I know for sure. Today I woke up and I am alive. Which means I am very blessed. I am happy. Staying positive is my choice. I will need your support to succeed. You will know when and why, because I will reach out (but feel free to volunteer)! But as my LIVESTRONG & TEAMNANNY families have shown me over and over again. WE are STRONGER TOGETHER. #TEAMNANNY #TheRoadBack #STILLSTRONG #LIVESTRONG #

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

Namesté

TEAMNANNY videos on You Tube (Walking and Skateboarding)

Dakota's Story on Facebook

DAKOTA'S STORY - SPCA 2 SERVICE DOG ON YOU TUBE

Tuesday, January 27, 2015

Like My Mother Does......

Well, the days are getting longer, and things are looking brighter and life is good! I am often asked how I can take so much & keep on moving forward with such enthusiasm. So this week, I took some time to reflect on how I got here, and what is it that keeps hope alive so strongly within me. How is it that I always seem to give more when I should probably feel like giving up? It is very simple. The answer came easily. It is a choice!

I often say it is the children and grandchildren who give me the strength to continue on this journey. We all know that #TEAMNANNY is a huge gift to me and that we bleed yellow! And while that is true, that they give me purpose to face another mountain, it is not always that simple. Sometimes it is very lonely being like I am, but then I just have to call for a play date with one of them, and I am immediately brought back into the present and we play, we are silly, and we are ALIVE!! An outing with a daughter is cool too. I am with my husband 24/7 and he is quite simply the light on my darkest days, and he believes in me. He supports all my dreams no matter how crazy they sound sometimes.

I was not supposed to be still alive in 2015 because my prognosis was so dismal, so how dare I not reach out when I get down. I have the most supportive family in the world, and they are always willing to help. I am not always willing to "ask" for help mind you! I am getting better at it!

This joy that I have for life did not begin with #TEAMNANNY mind you! I have been sick pretty much my whole life with one illness or another. Family know my extensive medical history, surgeries, hospitalizations, medical journeys with lupus and cancer have taken a lot from me. But despite the physical and emotional challenges I have on this journey I am happy. I mean I am really HAPPY. I would not trade me the way I am for anybody else on the planet. I am INSIDE out HAPPY. The kind of happy when you thank God every single day for the blessings he has bestowed upon me. The kind of happy that your #gratitude list is infinite.

But from the very beginning of my life, to be able to survive a life of illness I needed a much greater inner strength. You are not born with that strength. I am sure genetically I got my hard head from my DNA, after meeting my birth family ten years ago, it was apparent that we are survivors each in our own way. I was blessed the day I was adopted. The day my mom and my dad chose me to be their own, my parents changed my life forever. I know they sure as hell did not know what they were signing up for but that their deep faith carried them through. I must have done OK, since they decided to do it all over again with Danny two years later. I could not have chosen a better baby brother! While growing up we had our share of sibling rivalry, he has been the most supportive brother a sister could ever wish for.

We had a solid foundation of unconditional love. I was raised to appreciate life, all life. Find the good in every situation. And remember to say thank you! Lesson #1. Nailed it! :)

I knew I was loved. I knew I could screw up and they always had my back. And that is true until today. While I was always aware of how incredibly proud my parents were of me, it must have been hell these past few years on my mom to see how beat up I have been from my cancer and lupus and amputations. It is hard on the family here who see me struggle on a daily basis. My sweet husband has been through the worst of it with me, and I have seen the look on his face sometimes. When the fear takes him down, and the doubt takes him under, it just makes me just more determined to win. After all he is my backbone, my cornerstone, my crutch when my legs stop moving.

While I knew my whole life that I was "Daddy's girl", and a princess in his eyes, (if tom boys can be princesses?).....he was my hero. He survived war and illness, cancer and so much more. I miss him every day. But I know that I am glad he was not here to see me like this, struggling with every mountain that is put in front of me. It would have completely broken his heart, and he would have felt helpless. But mom would have been there to remind him that "she will be OK", like she did for so many years.

My mom was the caregiver in our family. She took care of all my dad's needs until the day he passed, and she has always been there for her family and friends. My mom is my foundation, my rock, my inspiration and I want to be just like her when I grow up. I will not grow old, because she has not grown old. While my mom has been through so much more in her lifetime than I ever will, she taught me to CHOOSE to be HAPPY when I was very very little. My mom rocks it at 87 1/2 . My mom is my biggest fan, my cheerleader. She is not quiet about it either. She is the first one to "Like" my posts on Facebook! She texts me every day to see if I am OK! I don't know any other mom like mine. My mom has aged, because that is what all of our bodies do. They age. But my mom is never going to grow old. So today, I just want my mom to know how much I love and appreciate her! I am dedicating this to you mom!! I hope you enjoy it!! It could have been written for us! Keep dancing mom, keep being happy, keep wanting to help others. Keep just being you! Because children "live what they learn", and I am still learning. And so far I have learned so much especially that I now know that at 88 I will be happy and have many friends...... Just Like My Mother Does. xoxoxo

Here is the link to the official video and below it the song's lyrics dedicated

to my mom,

Joyce Kilcullen.

(an ad plays first)

LIKE MY MOTHER DOES - Lauren Alaina

"Like My Mother Does"

[Verse 1]
People always say
I have a laugh
Like my mother does
Guess that makes sense
She taught me how to smile
When things get rough

I've got her spirit
She's always got my back
When I look at her
I think, I want to be just like that

[Chorus]
When I love I give it all I've got
Like my mother does
When I'm scared, I bow my head and pray
Like my mother does

When I feel weak and unpretty
I know I'm beautiful and strong
Because I see myself like my mother does

[Verse 2]
I never met a stranger
I can talk to anyone
Like my mother does
I let my temper fly
And she can walk away
When she's had enough

She sees everybody
For who they really are
I'm so thankful for her guidance
She helped me get this far

[Chorus]
When I love I give it all I've got
Like my mother does
When I'm scared, I bow my head and pray
Like my mother does

When I feel weak and unpretty
I know I'm beautiful and strong
Because
I see myself like my mother does

[Bridge]
She's a rock
She is grace
She's an angel
She's my heart and soul
She does it all

[Chorus]
When I love I give it all I've got
Like my mother does
When I'm scared, I bow my head and pray
Like my mother does

When I'm weak and unpretty
I know I'm beautiful and strong
Because
I see myself like my mother does
Like my mother does

I hear people saying
I'm starting to look like my mother does

LINK TO SONG VIDEO WITH LYRICS.

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

Namesté

TEAMNANNY videos on You Tube (Walking and Skateboarding)

Dakota's Story on Facebook

DAKOTA'S STORY - SPCA 2 SERVICE DOG ON YOU TUBE

Thursday, January 22, 2015

A SURVIVOR sharing the gift of HOPE!

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 IIICUterine 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.

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, the collateral damage post cancer including but not limited to.....

·Enteric NS Neuropathy – 2 o chemo (2008) · Celiac Disease (dx biopsy 2008) · Right leg AK amputation surgery ( September 16, 2010) · Right leg AK amputation revision surgery (March 30, 2011) · Radiation Colitis – (June 2011) · Moderate radiation proctitis with vascular ectasia & fibrotic area (October 2011) · Argon plasma coagulation – October 2011, December 2011 and March 2012 · Left leg AK amputation surgery (September 17, 2012) · Left leg AK amputation revision surgery (April 27, 2013) · Argon plasma coagulation – February 2014.

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 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.

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.

MARK YOU CALENDARS NOW ..... SATURDAY MAY 9, 2015 WILL BE OUR ANNUAL #TEAMNANNY #OUR#RACE#YOUR#PACE EVENT! MORE NEWS TO FOLLOW SOON!

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

Namesté

TEAMNANNY videos on You Tube (Walking and Skateboarding)