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!