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!


  1. Sending many prayers UP KathSis. the cake is just fabulous:)) as are you. <3 so glad you did this today, LiveStrong, dear Kath - you are surrounded by the best cheering section I've ever seen. Xo. Cathi

  2. You know what my feelings are; in fact, you know what I'm thinking right now. No words are necessary between us, dearest ForestChild ... just 4 symbols that mean so much to us.
    ❤ 4&4


  3. THANKYOU CathiSis & SunnyJanSia- yep all we need is <3 4 & 4 - and maybe to climb to the top of that mountain! xxxx

  4. Sending all the positive vibes I can. You know I always worry, no matter how much you say, "don't," but worry I must, because I love you. Be STRONG. Hurry back. Can't wait to see your post that says, "Out of surgery" and at least at that moment, thanks to super-duper drugs, will be pain free.

  5. Kathy you were an inspiration during my fight and I know how brave you are. Keep fighting because hearing "Nanny" is worth every second. Love Steph