Old <grin> Stage IV Member Checking In

Hey Gang (and all the new members since I was last here)!!

Thought you had gotten rid of me, huh?? Naaaaahhhh.... I'm still around and whenever a Stage IV person can say "I'm still around", this is a good thing!

Anywho... I am going to try and come back a bit more often, but alas, this Stage IV gal is incredibly busy. Who is giving out that false information that when you retire, the pace of life starts slowing down?? Are you kidding??? I need a "Slow Down" button, please!! I officially retired from my government job back on Feb 1. Yes, I took early retirement (age 55) instead of staying on Long Term Disability Insurance (which I could have stayed on for life) for one very simple reason , I get more money from Retirement Pension + Government Disability Pension (CPP Disability for those of us who are in Canada... I think the equivalent in the States is something like an SS Disability Insurance?). The only downfall to retiring from the day job is that they no longer cover my healthcare insurance... I'm on my own for that. Boo-Hoo! But I'm a poor retiree now!!! Oh well, bite the bullet and pay for it after all... all of us here totally understand how important it is to have healthcare insurance for all the tests/scans/meds/treatments/etc they put us through. At least I get a "retired employees retirement rate" as part of my retirement benefit. It cost me $18/month for full healthcare insurance, but they are going to raise the rates (costs are rising don't ya know) to $21/month. For all I know, they've already started to take $21/month off my retirement deposit.

Anywho... I'm so very sorry to hear all the sad news on this board that everyone has gone through. I think that is one of the biggest downfalls of a wonderful support group, is when the group is hit with bad news. Losing members is no worse than losing a family member or friend, whether people have met in person or the support is all done here in cyberland. You get to know people, what they are going through both with the health issues and bits and pieces of things in their life and of course, the big thing in a support groups is HOPE. When we lose members or they get terribly sick and have to go through painful surgeries with long recovery times... it chips away at that HOPE that we all have when things are going well. HOPE is an amazing tool that lifts ones spirits, inspires us to continue the battle, to never ever give up because as long as we are breathing, moving, talking, touching... we are alive and we have HOPE that things will get better.

Hahaha... ok, those who know me here (you all can warn the newbies about me), you do know I tend to ramble!! Cyberspace never seems to run out of space for me to write on .

Something really stuck out for me while I've been "lurking" and reading posts this last couple of weeks to try and get a feel for how things are going on the CSN Board, who is still here and who are all the new players... and that is this ongoing discussion of being NED. This term has been used for long before I was ever dx'd and I notice that back when I was a newbie on the Board, and even still, everyone looks up to when someone gets a diagnosis of "NED" (no evidence of disease) and then does the happy nekkid dance. If you think about it, NED is another acronym for HOPE. No evidence of disease does not mean you are disease free... it means that all the technology we have today can not detect disease with their blood tests and equipment. Anyone who has been dx'd as NED can relax because what this means is you have been given a BREAK!! A break from chemo or radiation treatments. You still are going to need follow up tests and appointments, but you are on hiatus from treatment!! Yayayaya... music to one's ears. But don't ever confuse the term NED with CURED, because that is not what it means... NED just means you are on vacation from all the treatments you had to endure. And NED is different for everyone. I could be dx'd as NED today (get all excited) and then on my next 3 month check (scan and lab anxiety) find out that something is happening and away we go again with treatments. Then again, I might go 10 years being NED and as far as I'm concerned, that is as good as being cured... but it's no guarantee the disease won't reoccur (could you imagine... how po'd you'd be if that happened??) Anywho... for anyone who reaches NED status, enjoy... but do not get upset or shocked when the disease comes back because NED does not mean CURED.

Ok... end of babble (sort of). I'll be back to chat and babble but right now I am up to my eyeballs in theatre (we are doing two musicals in rep with each other for 7 week... I'll finally get to take a break when the last show closes Aug 21). I am stage IV and no, I am not NED... I have never reached that status. I did the resection sugery, 8 months of chemo (FOLFOX) where the oxy did a real number to the nerves in both legs and feet from the knees down and just my luck, when we stopped the chemo the nerve damage and neuropathy never did disappear, and also did 6 weeks of daily radiation. I stopped that chemo in Oct 2007 and although the cancer had spread to my adrenal gland (had that surgically removed) and my lungs (it's still there but the nodules are very indolent (aka lazy)), I didn't need any treatment. So I was off chemo from Nov 1/2008 until... ta da ... July 2010. Yep, I'm back on chemo because two of the lazy nodules in my lungs have decided to become a little active... so we are nipping this in the bud (we hope) and with a little luck, the chemo will kill off any other nasty cell that is floating around in my system and thinking of landing and taking root. Heck, maybe it will attempt to work on the other lazy nodules in the lungs... one can always HOPE

Well, let me tell you... trying to juggle a busy, more than busy, theatre schedule AND be on chemo is quite the juggle. I'm on Xeloda which, I must say, I don't mind it for the most part except it attacks the damaged nerves in my feet something horrible. The most intense pain known to mankind!!. This was on a dose of 1650mg twice/day. So my onc reduced the dose to 1500mg twice/day and that worked much better... but is it enough? No sense taking the toxin if you aren't getting enough to do the work. So, this cycle we've increased it back to 1650mg twice/day but only for 10 weekdays, with the first weekend off, then after the second week, I get a 9 day break. Well, that cycle started on Monday and by 5pm that day, my feet were in pain. Soooo, we doubled the dose of Lyrica that I take for the nerve damage. I started that yesterday and so far... it's working!! We have the pain under control!! Yippee! So the battle continues

But, I want to end with... yes, the sadness that is abounding right now really is terrible, and it's happening to very nice, good people. We now have to put our energies into focusing that their journey is now going to be pain and worry free... and if it's not their time to go, they will be back in full fighting force. And if it is their time to go, focus your energies on a positive trip because the negative sad energy is not going to help them through. As for the rest of us... stop, take a deep breath and take inventory of yourselves. Are you breathing? Are you talking? Are you able to touch, hug and snuggle with loved ones? Are you able to get out of the house and do stuff? If the answer is yes to all of these things, then it's not your turn to leave so don't even give it the energy of thinking about it. It will come soon enough, be it this year or 20 years from now... and none of us know if this disease we worry about is going to be the trigger to send us on our way, or is it going to be something totally different. Save the worrying (which uses up a lot of energy) and put it towards something positive... and get out and enjoy your life because, surprise, surprise, we all have one!!