Monday, November 19, 2012

Ready for Rehab!!! Glad you Came! Here I come!

I have put the video's that have already been posted on You Tube, Facebook and Twitter on the top and bottom of this blog post so that those people who don't have time to read the blog can see just how awesome life is for me now. 
I have been given wings to FLY!!! 

      (Glad You Came)


3.  Cardio on my Carver Surfskate board! 
   Skateboard cardio workout at Surrey Community Center.  Thank you Carver for the sponsorship. :) 

They are my two most favorite Team Nanny videos up to date.  Mostly because I have waited 40 years, through blood, sweat and tears to get to where I am now.  I hope you all have the opportunity to feel the joy in "playing" again.  It will be better medicine than anything any Dr. can prescribe.  (Unless you are my dr putting the cortisone in my back! LOL) ...

I feel it has been overly busy lately, since my second leg was amputated it takes me longer to accomplish most tasks. But I am on a new learning curve and actually probably doing better than I give myself credit for.  I am off all narcotics (YAY) and take the occasional Tylenol and usually that is for pain associated with another illness not related to the amputations or my legs at all.
I still take my Lupus medications etc, but I feel so much better  not needing the pain meds every few hours. AND I don't ITCH! 

Laundry takes longer with the stairs, and last night after dinner I was tired, so Melanie folded all our laundry and put it on our bed.  I was chatting on the phone with my cousin while putting it away.  When it came to the socks, Melanie had folded the pairs over at the top.  I was carefully unfolding them looking for the logo so see if they were his or mine, and had done about six pairs before I remembered..... I don’t wear socks!!!!  At least not until I have prosthetics on again.

In the past six weeks I have had some of the happiest days of my life and look forward to a very bright and beautiful future with the family and our friends.  I am quite mobile now, and still have not started rehab for my second prosthesis.  I put it off waiting for André to recover from his surgery and so I have been doing my own form of therapy around here, working on balance and stability, and just being as strong as I can be.  Fighting through every day in my LiveSTRONG gear.  Livestrong has given me hope and inspiration when I was sure I was at the end.  And with that inspiration I have become fierce in my determination to win and come out on top.  It used to be walking was the priority, but that is crazy.  I mean a goal, yes.  My priority changed really quickly when I was finally pain free in my legs.  So I have had to radically change my bucket list to include some really crazy ideas.  And lately some of my activities have been a little crazy.  Tobogganing, swimming, diving, water slides, sit skiing, sledge skate, skateboarding!!  I mean, a skateboarding double amputee grandmother.  Yes, that describes the *new* me! I am working on balance, and efficiency!  I have been careful to avoid repetitive movements that could further hurt my shoulder.  My arms on the skateboard go back and forth, not round and round like my manual wheelchair, which just kills my shoulder, and why Patience has saved me all these years she has pulled my chair.  I pushed my chair for just a few minutes today, and am paying the price tonight.  Without Patience I would be confined to my power wheelchair for sure.  When she retires, I will need another service animal to keep my independence. That is a fact. How we make that happen, I do not know.  In the meantime, transferring from wheelchair to floor, to skateboard, to car, to bed, and up and down stairs all require up and down motion, not round and round.  I am avoiding injury at all cost so I can keep moving forward. Yes I wear safety gear, not so much because I am going to get hurt vacuuming the living room, but because I am a firm believer that children learn by example, and if the grandchildren see me wearing it, they will know it is made for everybody.  Even Nanny’s!  So I have found ways to cope, and get things done!   But I have not done it alone!!

There is not a person that I know that can get through all that I have been through without the support of an extremely loving husband,  family and friends that are there for the long haul.  It is always easy to say “I’ll be there for you”, but when called upon to when needed and be able to give of your time unconditionally, that is what makes the difference between making it with a positive attitude towards the future, and just making it, barely living, just surviving. 

I am blessed to have my online family (we prefer the term heart family) I am lucky that I have my Mom on Facebook so she can see and interact with the wonderful friends that I have had for so many years.  Through the power of the internet comes a flood of unconditional support and prayers, just like we have in our own family at home.  The thing that my mom shares with my internet friends is that you are separated to me by physical distance. You all love me, and help in your individual ways.  But you are all far away and often feel helpless.  My blog is a good way for me to deal with my life ... “and to let my family at home and heart family online share in it ... rejoice on the good days and commiserate on the not-so-good ones” (a quote from my heart sister, SunnyJan).   

My needs vary from day to day, hour to hour, sometimes minute to minute.  It changes because it is life and living is a varying thing.  It varies because I have multiple illnesses.  The amputation is in your face obvious, but let me tell you that radiation colitis is a far bigger disability than not having legs!!  That’s why it sometimes makes is difficult for me to ask for help.  One day I may need help with balance, and next day I am fine.  Sometimes I am just slow and have a foggy brain because of the multiple lupus medications I am on and their side effects, or leftover cognitive issues from chemo.   I often don’t even know what I need until it is too late and I have either done it myself, or have crashed before it was completed.  Would it be sometimes easier if I had just asked for help in the beginning?  Sometimes yes.  But I cannot foresee just how difficult some things are for me, and really wanted to save my “help cards” in case something important comes up.  I don’t want to use them up on day to day things that normally would wait even if I were not recuperating from major surgery.   I felt pressured this time to get things done better and faster than ever before because André ‘s shoulder replacement surgery was quickly approaching, I wanted to be independent before he came home from hospital.

Well in the past few days the final preparations were done to ease into the surgery with him and recovery.  I had hoped we could go to rehab together.  LOL “The Family Plan”! It did not happen that way, the house was decorated for Christmas, garden prepared for winter, cooked meals in freezer, we were ready.  Cindy had taken me shopping for his hospital kit list and Christmas gifts, and groceries.  We were all ready.  Packed.  Good to go.  And then the phone rang.  His surgery is cancelled for this week because they were missing parts and will be rescheduled.  He is anxious and upset.  I know exactly how he feels.  I took it hard when my surgery was postponed too.  I have been there, just a few months ago.  It is hard.  You want to be on the recovery side.  Ouch.  But we have each other, and we have those adorable little people in our lives that call us Nanny and Grand-papa, and that makes the future bright, no matter what may come our  way.  They help us daily making it the best day it can be.  We are always “glad they came”.  We will “Go The Distance” because we have  family and friends that go the distance with us every day.  We are so blessed.  So come, visit, stay awhile.  Spend a little time.  I’ll make you “Glad You Came”.....  

These links are the SAME links that were at the top of this blog entry.  I just put them here for convenience.  Along with my famous skateboard vacuuming one! :D)

Thursday, September 27, 2012

My LIVESTRONG journey continues - Recovery....the work begins!

Stretching out the hip flexors.  Shortening of these muscles that cross the front of the hip can lead to contracture formation which will make prosthesis use extremely difficult.
This double amputee journey started a very long time ago. Way back in 1972 when I had my first of a multiplicity of knee surgeries that lasted all the way through high school and as a young adult.  Over 20.  Both legs.  Braces since 1982. In a wheelchair since May 1989, a month before my own "Nanny" died. After surviving years with Arthritis,  and Lupus, Fibromyalgia, Osteoporosis, multiple leg fractures, infections of all kinds, I always had hope.  In 2002 I had a few years of remission and then when I felt like I had finally won the health lottery, great job, our chalet, birth of grandchildren, and trips to Maui, Hawaii, the perfect mate, healthy kids,  I was living the "LIVESTRONG" dream from a different angle.  I had already beat everything else.  I already had a miracle page on my personal website, - four wheel electric wheelchair to two wheel mountain bike.  I went from bedridden, being bathed and fed from our CLSC home health care givers to going to the gym at 6:00 a.m. every day before work and then back on my lunch for Yoga, Pilate's, Aerobics, any thing I could sign up for!  I was working 40-60 hours a week and I was stronger than I had been since I was 14 years of age.  

Then I was given the dismal diagnosis of late stage Uterine Papillary Serous Carcinoma (a rare mixed cancer that mimics ovarian cancer) diagnosis in January 2006.  It was staged in surgery and we knew it would be hard to beat, since the cancer could not be removed during the surgery.  At follow up a very teary eyed doctors gave us the dismal prognosis.  But after a year of surgery, chemo and radiation we DID beat the cancer. I say *we* because it took my whole family and support system to make this happen.  I don't know any cancer survivor who did as well on their own without help.  You know the expression "It takes a village to raise a child"?  Well it took an army to help me beat my cancer.  A LIVESTRONG army.  People who were not going to accept me giving in or giving up.  People @Livestrong who knew what it meant to survive with strength, courage and dignity.  It will be six years next Wednesday since the end of my chemotherapy and radiation treatments.  So we all know that 10 month prognosis was wrong.  They did not know me, or my will to survive. 
My daughters had their fair share of health challenges as children and they overcame them all.  They are healthy, happy, amazing adults now.  But yes I had a village help me raise them.  They have always known that kind of support, and are not really surprised when they see how great humanity and community can be in times of need.  
This journey mind you has been bittersweet.  After my radiation treatments my health began to snowball out of control.  Lupus flares, deterioration of the connective tissue that was left in my knees, already destroyed with years of surgeries and treatments.  Neuropathy of ENS, hands, feet, Celiac's disease, bone degeneration from steroid use to treat life threatening Lupus inflammation, and the list goes on.  The collateral damage from the chemo and radiation had attacked my already immune weakened body.  But I was determined to survive the cancer and was not going to die from some side effect of treatment!  

The first amputation was of my right leg above the knee in Septemer 2010.  That did not work.  Amputation revision surgery which was much harder than the original amputation was performed in March 2011.  Two long years of pain and tears as the amputation was successful but the left leg could not hold up under the pressure.  There were triumphs, (the surfing, swimming, walking, biking).  But it was short lived.  A few months later I was in such sever pain I was on the heaviest amount of narcotics I have ever used.  Was I surprised? No.  The reason so many of my leg operations failed.  But FINALLY we have a letter from my oncologist to my other doctors stating that this amputation is due in part because of my radiation treatments.  It was a detrimental chain reaction.  Lupus drugs cause cancer,  cancer treatments exasperate Lupus, the circle that never ends. 

Coming into this second amputation surgery we knew the odds were stacked against me given all the other health challenges this past year with other collateral damage from my radiation treatments.  Did you know that radiation can continue to kill healthy cells for years later?  No we didn't either!  Nobody told us that when I signed up for survivor ship treatments.  Not that it would have changed my mind.  I could not have changed my treatment regime, because you cannot argue with success and my life with the fallout is still better than no life, IMHO

My chemo "brain" jumbles thoughts on the best of days, short term memory gone, factor in the "Lupus" flares, radiation colitis (what a nightmare that has been) and it just did not look hopeful, on any level.  It had been the year from hell and now we were signing up for another year of uncertainty, but really felt we had no choice. No regrets.  I had phantom pain/phantom limb training with Bernard and the 4Mclub all last winter. The results were phenomenal, which made me even more sure that I could handle a second amputation. 

The reality was both André and I needed serious surgery and I needed to go first.  It was extremely hard on us living day to day with every day wondering what illness will rear it's ugly head that day.  We survived.  I had my LIVESTRONG clothing, shoes, socks.  I even had my prosthetic made with my favorite Livestrong logos on it.  My legbrace was made black/yellow and I glued on a LIVESTRONG sticker.  A 24hr reminder that I was not giving up.  That people with much bigger battles had won at this.  I just had to hang on.  
 But  the wait for the second amputation was hard on our families.  Especially my mom, at 86, living in Ontario and worrying and wondering what was happening down here.  We did promise to keep her informed every step of the way, that she would get a call before anybody got a text or Facebook was updated.  It still kept her in the "I don't know what to think" mindset, and no family around her to bounce ideas off of.  Then there was the children, and grandchildren.  ALL of them.  We could not make plans.  I was not dependable.  I was not able to swim, or camp, or go anywhere.  Heck I even got my wheelchair stuck in the sand at the park two blocks away.  I was waiting for the phone to ring for a second amputation surgery that scared the hell out of everybody.  All I could do was try and see the children who live near to me as much as possible and to enjoy the visits when the older ones were able to make it into Montreal.  My brother and his family were able to make it into Montreal for a visit in August, and my mom came for her annual summer visit in July.  Those were special times for me as I knew I had turned their worlds upside down and the were so supportive and so understanding and even sympathetic to the stress of the "waiting game".  And my sweet André, husband, lover, nurse, chauffeur, PIC, with his own shoulder pain was taking care of me 24/7.  Ok, we were taking care of each other.  But for sure when we were wed nobody could have predicted the commitment it would take to overcome all the challenges that have been thrown at us.  We have always been together.  We lived together, we worked together, and although we have  had our moments (apparently I am a world class button pusher, confirmed by those who know me best!)...we have survived all of this stronger and more in love than ever.  We have learned compromise.  We have lived STRONG, and continue to LIVESTRONG.  When we were done with the post treatment weekly, monthly visits at oncology it was LIVESTRONG (The Lance Armstrong Foundation) that guided us and helped us navigate "life after treatment", with all the collateral damage that can and DID occur.  They filled in all the gaps.  I had their books.  They are awesome and they are FREE.  I have given them as gifts to friends who were diagnosed after me.  It was the gift that just kept on giving.  Yes we have supported local cancer events over the past years.  But at LIVESTRONG, they did not care what kind of cancer I had.  They did not care that I was Canadian and not American.  They just wanted to help.  They encouraged me, and gave me HOPE.  Trust me, no matter how bad you think your day is, there is a LIVESTRONG survivor story out there that will just blow you away and the bar gets raised even higher.  That appealed to me, to us.  It was called HOPE!
My 15th Anniversry Livestrong t-shirt arrived the day of my amputation!
I think it looks great on top of a hospital gown.
No worries, I wore it home the next day!
Finally ten days ago the above the knee amputation surgery  happened.  I proudly sported my 15 year LIVESTRONG anniversary tee and on discharge.
"I am not disabled! 
I am just surgically altered for optimum performance!! 
 Pre and post-op I was well prepared with preparation exercises designed by my daughter Melanie, a personal fitness trainer by profession.  She did amazing, and it is not that I repeated her exercises to the letter, no I varied them.  Some days I preferred lifting bags of dirt than weights.  But one thing she drilled into me and a lesson I took very seriously was how NOT to get hurt.  I knew how to do exercises.  I was the one at the gym every morning back in my pre-cancer days.  Everywhere I need to transfer I need to lift my whole body weight with my arms.  But those in the "know" are aware of my little accident in 1998 where I broke a couple of vertebrae after landing on my shoulder, leaving me with chronic scapulothoracic bursitis w/crepitus for which I receive cortisone injections in my back every three months.  That was the reason for Patience, my service dog pulling my manual chair, and for the need of an electric wheelchair at home, on the road etc.  My shoulder cannot take the repetitive movements.   Well Melanie well aware of that condition, she gave me the best advice, which paid off.  I had to be in shape when this happened.  And yesterday I had my first (and last) at home physiotherapy assessment before rehab in eight weeks.  I was so proud to tell the therapist about my wonderful daughter and her getting me ready for this new chapter.  So as he was giving me a maintenance program for the next eight weeks, and checked very carefully my ability to transfer from chair to bed to car etc.  He told me that all exercise is on "hold" until my still open incision closes, but assured me I was "ready" for my second prosthesis.  He also gave me a warning that once I go back to rehab, to take it slowly.  He said it will be much harder being an above the knee amputee, but he said it was not impossible, and he believed that I could do it.   Ya so do I.  I have the best trainer on the planet to compliment my rehab team.  Her name is Melanie Kilcullen and I am proud to be her mother.  She keeps me "LivingSTRONG" and she walks the talk.  One day, my LIVESTRONG bag will be a gym bag and we will train on her turf.  For now, the home care.... ya I'll take it.  

To reach Melanie on how fitness can improve your quality of life - you can find her on Facebook, follower her on twitter @The_Killer_K  or ask me for her work info.  

Sunday, September 16, 2012

And the LIVESTRONG Journey Continues.....

OR Time For Another Weight Loss Surgery - (André's attempt at humor).

It has been a very uncomfortable summer. I like routine. I like being in control. And I HATE putting my family or friends out because of what I “do not know”!
I hate uncertainty and I am not alone in that boat. And I hate fear, and on more than one occasion this past summer I have let fear dictate how I’ve felt. I know better than to do that, but sometimes it is just easier to give into the emotions than it is to be strong.

I am very clear that I have been very public about this LiveSTRONG journey, and my Lupus journey I have been on for so many many years.   I have done it mostly because I like being a beacon of light for others on days when they feel like giving up. It is one of those “bragging” rights that survivors (from any illness) get to preach about. That you enlighten people through your own example that you CAN win, and you must FIGHT LIKE HELL, and DON’T QUIT!!  You encourage others by example.  I took some slack at the beginning of the summer that basically equaled the "You don't look sick|" comment uneducated people usually make to Lupus patients or patients with other "invisible" illnesses.  Because my leg "did not look sick" to the naked eye, people questioned my need for amputation.  Not the doctors, just the general public.  I took it to heart and withdrew from the whole waiting game.  Now my mindset has reverted back to one of educator, because right now at this very moment, I have a handful of friends going through chemotherapy, radiation therapy, and/or fighting the collateral damage of their cancer treatments, or their Lupus treatments or the collateral damage from chemical treatments as I am. And my little niece Hailey needs 72 MORE chemotherapy treatments. As recently as last weekend cancer took somebody from our extended (Hailey's) family, and to see the hurt on our loved ones faces just broke my heart.  So screw the hatmongers,  for they know not of what they speak.  They are taking away hope where people desperately NEED it.

We have finally told the grandchildren that my second amputation will be happening soon. The grandchildren were ok with it.  They asked some normal questions, made some silly remarks, but bottom line, if Nanny is ok then so are they.  It is hard to try to explain elective amputation.  The only thing that makes it elective is the fact that the limb itself will not kill me.  It has had 20+ surgeries already and if not amputated the high doses of narcotics mixed with my normal mix of medications for the other multiple diseases, will certainly over time guarantee my demise.  So in fact, if I want to keep up the "survivor ship" role, then I must go through with this.  It is not a hard decision for me.  I just don't want to be drug dependent and suffering <any more than necessary> for the rest of my life, however long that may be.  The summer was hard on everyone.  Especially the "not knowing".  We could make no plans, we could not go anywhere, there was no respite from the pain, from the hell.  The only joy I felt all summer was the love of family and friends, and of course from the little people who call me "Nanny'!  I so adore them all.

As in little as 24hrs it may even be over. I am scheduled to arrive at admissions at Maisonneuve-Rosemont at 6:30 a.m. tomorrow morning (Monday, September 17th), two years and one day from my first amputation. I am ready.  Past ready.  The pain this past year has been relentless, and with the high dose of narcotics, and other pain medications, Lupus medications etc my organs just cannot handle being bombarded with all of these chemicals.  I am choosing to survive.  It is that simple.

These “Team Nanny = Livestrong” photos that I’ve included with this blog entry are ready, laminated (so they can be wiped germ free), and are coming with me.


 It may be a long wait for the operating room. Last time after being admitted at 6:30 a.m..  they did not call my name until 2:45 P.M. They stop calling names at 3:00 and just send you home, so I am letting that word I hate so much creep back into my last few hours here....*fear*! I am not fearful of the surgery itself, I was ready a year ago.  And I am not fearful of the excruciating phantom pain
of the last amputation since Bernard has trained me well and I have my "healers" on stand by. 
The radiation therapy collateral damage to my colon kept getting in the way and then there was the surgeon change. I am fearful that I will once again (it has happened in the past) that I will be bumped off tomorrow’s schedule. But that is out of my control, so I am trying to bring myself back to the present moment. I will be “ok” – well at least distracted when the kids come for supper, but this will be a very long night. 
 I have NEVER been good at WAITING!

I have a “to-do” list that I would like to get done, but instead I have been goofing around editing photos, writing this blog, posting on facebook.... In other words I am a scatter brain today. Let’s just call it chemo-brain, because I really have had no short term memory since they poisoned me nearly six years ago now. Since my cancer, I have become a Celiac, I have developed neuropathy of my ENS, I have neuropathy in my hands and feet (well we can take the feet out of the equation now) ...and I have had my right leg amputated, TWICE. And this past year I developed radiation colitis, requiring four more procedures that were also a challenge.

Well the best part of today, like any day is when the children arrive.  Our Sunday dinners have always been very special to me.  Usually I cook, but tonight I did not feel like it.  The kids took over and it was just perfect.  And then the dessert, which normally I skip because of my gluten intolerance.  Tonight there was a very special dessert from the kids.  Melanie went and got it.  It was a "Gluten Free" Chocolate ice cream cake from TCBY!

Factor in that I still have LUPUS, which flares with STRESS this summer my body hates me. I cannot wait to be back on the journey up, because “up” suggests positive. You know, “keep your chin UP”, “don’t give UP”, “When you’ve hit bottom there is nowhere else to go but “UP”! So when I awaken tomorrow morning (which suggests I will sleep tonight), I will get UP with my sweet husband, André who as been lifting my spirits UP all summer. I also have friends whom have also been on the “Keep Kath UP” team all summer, with the good wishes, prayers, candle lighting, notes, humor, visits, dinners, etc. I am not going to name anyone as that will just make me stress over who I left out.  But I am really blessed with friends, some go all the way back to my childhood!  I have appreciated all of it, believe me. I know I would not have made it through this far without your love and support. So tomorrow, when you get *up* please send the positive vibes my way that I do not get “bumped” off the list. After that no worries, I’ve got it. I can do it. I will do it. And I will succeed. You see I have this secret weapon that is nothing short of miraculous! It is called, “TEAM NANNY”! Thank you to everyone who encourages me to succeed. I am so blessed. And to the little ones who call me “Nanny”, you always make my heart smile. You are my every breath, and I will always win for us!

So I am packed! I have my "LiveSTRONG" gear... My "Comfort Quilt" now dubbed "blankie" from my friend Liz in PEI, and a truck load of good wishes and prayers.

Team Nanny = LiveSTRONG 4 EVER!

Wednesday, August 29, 2012



We enjoyed another great opening ceremony today.  It is just a great thing that I can hook my laptop up to my television for veiwing streamed events. 

Unlike the Olympics, who share every prime time slot on main networks for two weeks, if one is interested in the Paralympics you have to go and search where to view it.  We have a couple of channel choices in Montreal, as long as you subscribe to those channels!  I used the website and app to navigate through the Olympics at the beginning of August.  I am grateful that they are providing links with coverage to the Paralympics even if it is not on their network!  After enjoying the ceremonies, André and I were particularly moved by the finale, performed by Beverly Knight, called, "I am what I am" and *I AM* seriously considering making it my new anthem.  Either you are going to get that or you are not.  "It's my life and not a place to have to hide in".... lyrics that spoke to me, to us.  But that is what I am feeling these days.  Tonight I just want to share the song that Beverly sang out loud and clear.... captured my attention and my heart tonight as I watched all the paralympians join in the chorus! 

Here is the link to the song, and then below the lyrics!  Powerful.  My best wishes to all the athletes!

I am what I am
I am my own special creation
So come take a look
Give me the hook
Or the ovation
It's my world
That I want to have a little pride
My world
And it's not a place I have to hide in
Life's not worth a dam
Till I can say
I am what I am

I am what I am
I don't want praise
I don't want pity
I bang my own drum
Some think it's noise
I think it's pretty
And so what if I love each sparkle and each bangle
Why not see things from a different angle
Your life is a shame
Till you can shout out
I am what I am

I am what I am
And what I am needs no excuses
I deal my own deck
Sometimes the aces sometimes the deuces
It's one life and there's no return and no deposit
One life so it's time to open up your closet
Life's not worth a dam till you can shout out
I am what I am

I am what I am

I am what I am
And what I am needs no excuses
I deal my own deck sometimes the aces sometimes the deuces
It's one life and there's no return and no deposit
One life so it's time to open up your closet
Life's not worth a dam till you can shout out
I am what I am

I am I am I am good
I am I am I am strong
I am I am I am worthy
I am I am I belong
I am
I am
Who whoooo etc.
I am

I am I am I am useful
I am I am I am true
I am I am somebody
I am as good as you

Yes I am

Sunday, July 22, 2012

What a wonderful day it was.....

We finally  were able to visit Julie and Charlie in  their new home yesterday.  They had a family BBQ to celebrate Gabriel's birthday (but we had missed Jesse, Rachel and Hailey's as well since Hailey started her cancer treatments)! 

It was nice to be all together again.  It was difficult to see little Hailey for the first time after all these months.
I passed on the  messages from family and friends for all the prayers for healing.   The littlest survivor on Team Nanny is really fighting.  She had a fever (again) and really was not feeling well.  Oh how I just wanted to sprinkle some fairy dust on her and make it all go away.  There was nothing I could do to make her feel better.  I did try her waka waka theme song.  It helped for a few minutes. Please remember to  keep her and her family in your prayers.  She is so little and it is just so unfair. 
Here is the link to my online album that I have created.

I have decided to keep my albums (other than my gardens, pets, randoms, shares, and the odd kid pic) off of Facebook for various reasons.  Mostly do to people *not getting it*.  I do things I probably should not.  I know that.  BUT if I don't try then I will just lay here and die. The pain is relentless if I stay in bed or if I get up, get dressed, and live life on the outside.   So I soldier on.  I take extra drugs to get through a busy day.  We know these drugs are damaging my organs, and that the amputation cannot come soon enough, but despite that, I make sure to make the best of it, I have fun, I laugh, I play.  Today I am barely able to move, but it WAS worth the effort.  The pain meds really did a number on my stomach, but I would not change that moment of happiness for anything.  And it was worth LIVING STRONG.

When we arrived home our eldest granddaughter, Marilou was here with Bridgette and we had a short visit before driving them to the airport for their trip to France! Bon Voyage! I can't wait to hear all about it.  

So enjoy the smiles, and try not to crack up too much when you realize I soooooooooo lost that water fight to a bunch of kids that were seven and under! I was out numbered five to one!  I spent the first half of the visit socializing, taking pictures that are already precious memories.  I am not sure how I got myself into a five against one water balloon war, but it sure was better than sitting on the sidelines.  Thank you to my sweet Andre for keeping his eye on me, trusting me to not get hurt, and for capturing it all on film.  I love you for letting me be me, "your crazy papou"! 

It was a very busy day, but you were there for me, making sure you helped when needed and then picking up the pieces of the broken me afterwards, like always! 

"Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover." .....   Mark Twain

Rx Pharmaceuticals $$$$$$,
Prosthetics, braces, and other various hardware, $$$$$$
One salon hair cut, style and blow dry, $$$$$
The look on the kids faces when they soaked  
me and my new hair do PRICELESS!
The look on my face when I got them back, SHAMELESS! 

Saturday, July 7, 2012


This weekend my daughter Melanie is participating in the RIDE TO CONQUER CANCER...... a two day 200km bike ride between Montreal and Québec City.  

She says on her ride profile page under my picture – “We each have a reason to ride. Here's mine”.  Few words with a million emotions packed into them.  At 4 a.m. this morning I received a txt message..... "Mom I need you to put a “Team Nanny” sticker on my jersey please!"  She always was a child to leave things to the last minute!  But she always knew I would be there to help do whatever needed to be done.  Some people would say I spoiled my girls.... that I do too much for them.  NO I do not.  I LOVE my girls, and as my daughter Cindy once told me just after she had become a mom, “You cannot *SPOIL* a child with *LOVE*!!  And she was right.  I have always agreed.  And I know in my heart, for the past 30+ years of being a mother and a grandmother, my children would do the same for me..... anytime, anything, anywhere, in a heartbeat.  Because they love me.
So the “Team Nanny”  sticker was custom made and ironed on to the jersey, and enclosed in the bag was this thank you card from me to my baby girl who will take a small piece of me with her on this journey.  

It says.....


There are never words that can express what survivorship means at any cost.  Just looking into your beautiful eyes, the window to your soul, is reason enough for me to always keep fighting.  Be safe on your “EPIC RIDE”..... one day these annual fundraisers will be the reason for the cure, but as long as cancer exists and takes or hurts those people we love..... KEEP RIDING ..... You carry my heart in yours, every time it beats.  Stay safe this weekend baby girl....
 Love 4 ever, Mommy xoxo

And to all the family members and friends who sponsored her this year, THANK YOU!  Your heartfelt generosity is so gratefully appreciated.  One day we will have a cure and the suffering will stop.  But this year alone  I have both family (little Hailey) and friends (Lorna, Nat, Eden, Rob, Linda....) that were diagnosed and are fighting cancer and I know you have somebody you know too.  You know me.  Cancer doesn't always end when the cancer cells are destroyed.  In the process healthy cells are destroyed too.  And the side effects can last a lifetime.  

Sunday, July 1, 2012

Team Nanny's Pond 2012

Life has been a little less than kind lately, with multiple health challenges getting in the way of what I would like to accomplish. Acceptance of any kind of limitations has always been hard on me.  I just don't like it when I run out of "choices" in what I can do. Falls have left me injured and more aware than ever of my limitations and how I need to have this amputation over with.  My prosthetic leg is strong, but more often than  not it is the other knee that cannot hold me up, even braced.  Often days I am not very mobile at all, and must stay in my chiar.  I can't venture far from home, my health gets in the way.  On those days I am grateful for the oasis we have created in our little corner of the planet.  I make the choice to be happy, because no matter what happens with my health, the choice to be happy is always there for me.  

If there is one thing I can say about the ten years of gardening and nurturing is that we have created a charm that we enjoy so much it has turned us often into homebodies! When you can't go to nature, create it and invite the wildlife to you!  We are blessed with bird songs, and little critters that really make you say, "Look"!  The video.... I can just listen to it on my iPad now or computer, and it will bring me back to these peaceful moments that I am so grateful for.  I have a sweet friend who is also home bound because of health challenges and it was in thinking of her that I created this video to help her go to her own peaceful spot in the Smokey Mountains. My virtual gift to make the really hard moments a little more bearable.    I could never have done all of this without André's vision and muscle power.  The maintenance is mine by choice.  I am happy in nature. I love to dig in the dirt.  I love to watch how things grow.   I used to camp to get that "feel".... but this is surely the next best thing to being close to nature when you live a block from the international airport runway! :D) Friends and family are always welcome here, and especially the visits from the little "Team Nanny" members! Happy Canada Day friends.  Peace.  *Love* & *Light*  Kath


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Wednesday, May 23, 2012


It’s all in the attitude!  So I’ve been told.  While waiting for the phone to ring, for over a month, I am sure my “attitude” has been less than tolerable, on so many levels.  When did I stop living in the moment?  When did I think about giving up?  After the moment with Dr. “F” that beat me up.  Apparently it was a test.  Apparently my “attitude” got me where I am today.  Apparently I won, on all levels, with every single consult.  My surgeon called.  She had just come back from Italy, and she fit me in to schedule right away.   She confirmed, I am still on admissions list, at the same hospital, where all of my amputation records are. 
After a lengthy discussion with my surgeon, she explained to us that all the doctors who examined and evaluated me all had the same recommendation for my amputation surgery.  We are out of viable options, only one left is an amputation.  That said, because my first amputation was extremely difficult, needing revision as we all know, she had concerns about the next surgery.  She cannot seem to wrap her head around doing it herself, so her senior partner will be doing the actual cutting. She is too emotional to be the “one” to do it.  She will follow me after as always, and she said she will be there cheering when I walk in with my new prosthetics, but she loves me, and it is not now that she is worried about, it is thirty years from now.  Gotta love a lady who thinks my survival will be thirty years from now!  This was a “stomach wrenching” decision for her.  We talked, and talked.  Bottom line is that this amputation needs to be done, and after all the consultations, the chief of orthopedic oncology, and orthopedic surgery at the hospital, her “team-mate, clinic partner” has stepped in to do the surgery himself.  Dr. I, an awesome well known surgeon in ortho-oncology at my hospital and St. Justine’s hospital where our niece, Hailey is being treated will be performing the actual surgery.  Because I will be at the same hospital, no more tests needed.  Just the hurry up and wait game. 
Yesterday was a busy day to say the least, and after having the “amputation” news behind us, realizing we were in the same “stand by and wait for the call from admissions mode” we changed our mindset and  by evening we were at the Bell Center to  see Il Divo, live, a gift we had received last fall.  Tickets we were sure we would have to give away, thinking I’d have had the surgery by now!  One of the stand out moments of the evening was not even the star attraction, but was meeting an “online” friend for the first time in person, Patrick Beaudry.  My daughter, Melanie, knew Patrick.  I had only the pleasure of chatting with him via computer.  Patrick Beaudry is the awesome photographer who did Melanie’s first photos.  He is also an event photographer for Evenko – one of the top entertainment promoters in the country.  It was a magical moment for me to be able to meet him! We exchanged text messages, trying to figure out where we each were.  After texting back and forth while he was waiting in the media center,  (him) “I’m wearing a grey and white striped shirt”,  (Me) “I’m wearing a silver leg”! Now all this “excitement” was preceded just minutes before by a performance by Nikki Yanofsky performing her signature song “I Believe” (Lyrics below) which had brought me to tears.  It was my ringtone on my phone since Vancouver, Canada hosted the winter Olympics.  I lost it as soon as Nikki started singing, I was sobbing basket case, all the pent up anxiety and fragile emotions came flooding out.  André just hugged me, knowing it was a bittersweet moment. I did not know she was the opening act, so I was ecstatic!  She started singing,

There comes a moment when my heart must stand alone, On this lonely path I've chosen, Like a house that's not a home, Sometimes when I feel I've had enough,  And I feel like giving up, You willed me to be all I can be, Now nothing can stop me!  I believe in the power that comes, from a world brought together as one.......I believe together we'll fly, I believe in the power of you and I”
Right after Nikki was a short break for the crew to set up  I went back to the music media gates and found Patrick.  I gave him a big hug, kinda hard with all the camera equipment!!  I’m not even sure I remembered to thank him for all his support this past year.  His photograpy is in my humble opinion, the best I’ve seen – ever!  So enjoy his site, and if you need family photos done, pets, he can do it all!  Check him out here! 

My turn for my amputation surgery will come up one day.  The sad part is *if* I am being delayed now, it is because another child has come in to the ortho clinic, and they will diagnose his/her  bone cancer and explain to his/her loved one that they needs immediate surgery to remove the cancer the best they can.  Now that is a real reality check.  I remember being on the OR list for my cancer surgery - 36hrs pre-op, no food or water, just I.V. fluids and ice chips, and a family waiting.  We remember that like it was yesterday.  Why did I wait 36hrs in 2006? Well they had my bleeding under control and the an organ would come into the hospital needing immediate transplantation to save another life.  Reality check.   I was somewhat jerked around lately, with a lot of "what if's".  I was upset.  But I am not alone.  I have you, “Team Nanny” to keep me in a safe place until *my* day arrives.   Somewhere out there today another family just got their cancer diagnosis and their world is falling apart.  Or worse, we lost another loved one somewhere.  Thank you, to all of you, for holding me up along this journey.  It is not an easy one and your friendship has meant more to me than I can even put into words.  With you by my side, I believe we can fly!!  Enjoy the song, Enjoy the lyrics.  and BELIEVE  because as Nikki sings loud and strong,
And in my heart, there'll be no doubt
The arms of the world will come reaching out
And embrace me to be all I can be
Now nothing can stop me
I believe in the power that comes
From a world brought together as one
I believe together we'll fly
I believe in the power of you and I”

Katherine Kilcullen has shared a video with you on YouTube:

Music video by Nikki Yanofsky performing I Believe. (C) 2010 Decca Label Group

There comes a moment when my heart must stand alone
On this lonely path I've chosen
Like a house that's not a home
Sometimes when I feel I've had enough
And I feel like giving up
You willed me to be all I can be
Now nothing can stop me

I believe in the power that comes
From a world brought together as one
I believe together we'll fly
I believe in the power of you and I

This is the moment we have dreamed of all our lives
We'll be the change we wish from others
We'll stand tall for what is right
And in my heart, there'll be no doubt
The arms of the world will come reaching out
And embrace me to be all I can be
Now nothing can stop me

I believe in the power that comes
From a world brought together as one
I believe together we'll fly
I believe in the power of you and I

I believe the time is right now
Stand tall and make the world proud
I believe together we'll fly
I believe in the power of you and I
I believe in the power of you and I

I believe, I believe, I believe in...
I believe, I believe in...
I believe, I believe, I believe in...
I believe, I believe in you
I believe, I believe, I believe in...
I believe, I believe in you
I believe, I believe, I believe in you

I believe together we'll fly
I believe in the power of you and I

I believe the time is right now
Stand tall and make the world proud
I believe together we'll fly
I believe in the power...

I believe in the power that comes
From a world brought together as one (of you and I)
I believe together we'll fly
I believe in the power of you and I (I will)

I believe the time is right now
Stand tall and make the world proud
I believe together we'll fly (together we'll fly)

I believe in the power of you and I (I believe in the power of you and I)

Thursday, May 17, 2012

My Favorite Season is Here!

I love spring and summer! Especially as our gardens come back to life, and my world becomes “forest green” once again.  This evening after a day of gardening, Cassidy and I took Patience for a walk and we noticed the sweet smell of lilacs everywhere we went.  

This white lilac is our front yard.

Our neighborhood had them everywhere.  We both had so much fun looking at our neighbors yards seeing all the pretty flower baskets  My own yard has three different varieties and waking up to the sounds of the birds busy feeding their young, and the fragrance of the lilacs is pure joy.  I love as the perennials in our garden come alive once again decorating our yard with beautiful colors and textures.  

before May 2012

Today I managed to get one garden turned over, weeded, and mulched.  I love getting down and dirty! 

after May 2012


This year we added another level to the front deck and a new mailbox.  I loved creating it and the charm that it adds to the front yard.  

The collages I created are made of everything that we love about this home.  The people who we call “family”, the flowers that bring us so much joy that come back every year, and of course it would not be artistic if it did not have André’s paintings!  

I still have to add some paw prints, but that will come in time.  I need help from the resident artist with that task! 
Tomorrow is a “Team Nanny” day! The children have no school.  I have no idea what we will be doing yet, but I do know that there will be smiles, giggles, love and laughter, music and hugs, hugs, hugs!!  Throw in a few chocolate chip cookies and some “Nanny Tai’s” and it is a recipe for guaranteed happiness.  Yes.  I love this time of the year!   I waited all winter for this.  I am not going to waste a minute of it!  Only eight more gardens to do!