Thursday, September 27, 2012

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

MARK MY WORDS... I WILL WALK AGAIN....
I AM on the WINNING TEAM
TEAM NANNY  - OUR LIVESTRONG team.
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!! 
I LIVESTRONG because I CAN!"
 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.