Waiting for NED
 

They say if you can't be with the one you love, love the one you're with. I had a scan Wednesday that shows everything is stable. I'm trying to learn to be delighted with that. It's certainly better than hearing there's been progression, but why do I feel like I'm hanging onto a rope by one hand, dangling over an abyss, and could fall any minute?

I put a brave face on it for my family and friends, but I could use some help framing this as positive. I mean, I know that in my head, but how do I get it into my heart?

I don't want to seem like an ingrate. And, really, NED can come and go, and I know that. But it's still hard for me.

It is what it is. I am what I am. I'm alive and kickin'. Right?

Re: Waiting for NED
 

Right! Hi, Amy!
You are strong, resilient, and it's all good. A wise author friend (40 books and counting!) of mine once said to me, "No matter what happens, everything will be alright." Over the years, that phrase has lived in my head and I know it to be true. It's now part of my institution. I thought I'd share that with you.
None of us know what's up around the bend. Allow yourself the uncertainty in an uncertain world, and know it gets better.
Warmly,
Karen

Re: Waiting for NED
 

Amy,
For me...knowing that wherever this ugly journey heads...I'm not alone...is what helps me stay positive and keep fighting. When my Mom was terminal, she told me many times, "There are lots of things worse than dying." She could feel Jesus near her...walking beside her...maybe even carrying her sometimes like in the Footprints story.

I strive for that kind of peace...but I have to admit...I struggle. I want to let Him be in control...handle things for me...but I seem to keep snatching the reins back from time to time. And, of course...the injustice of being so sick, and relatively young...well that pisses me off sometimes. Especially with all the horribly mean and selfish, but healthy people all over the place.

Hmmm...rereading that...it's really not much help. Sorry. It seems to me you're doing your best to be positive under the circumstances...and your best is all anyone can expect. (even you!) Try not to be too hard on yourself.

Sending love and hugs!
Denise

Re: Waiting for NED
 

Amy I have no personal experience to draw on other than to say I think its very normal to walk on egg shells once we've had this disease so I hope NED will be with you for a long time to come and so glad your results were good.:)

Re: Waiting for NED
 

We all like NED, but remember he can be a flake. Stable is good, especially when you remember that neither tykerb or herceptin are "cytotoxic"agents - they can stop growth and hopefully alert your own immune system to join the fight, but they are not cancer killing drugs. So they may work towards helping the disease regress but may take longer.

Also remember. NED can still show up in the future.

I know it's discouraging to feel like you are not gaining ground. But the fact you are still here, still strong, and holding the cancer in check are mall good thngs

Re: Waiting for NED
 

Amy,

Stable is good. You've only been on the Tykerb/Herceptin for 7 weeks and stable means the new combo is working. I'm certain the next scan will show more improvement and you will achieve NED within a couple of more scans.

Sending you good vibes...

Re: Waiting for NED
 

I know how you feel. I was so hoping for NED after my chemotherapy. While everyone else was pretty happy I had one 10 mm tumor left in my liver, I was pretty bummed that I still had cancer at all. Because of that one little tumor..every time I cough or hurt I think it is a giant mets that is going to take me out at any given moment. In my mind, if there is any there at all, it could spread at any time. I guess in reality it can always show up at any time any place it wants to.

This really is so hard, and such a strange situation to be in...((hugs)) I wish I had some kind of sage advice to give, but all I can think to say is you definitely are not alone, and keep your chin up. Our turn to be with NED must be just around the corner... :)