[chrisy]

Well, that's a great question...if you find the answer please share it.

Being stage IV is depressing - I experience the "feeling doomed" mostly as a profound sadness. And you're right, every time something comes up it is a battle.

For me, the "something" can be slight progression, no progression, treatment WORKING (but for how long?), learning of even a relative stranger's death to this disease, learning of someone miraculously surviving it. Good news, bad news, no news...I worry about who will finance my sister and niece; who will love my husband if I'm not there. I am, after all, his "human credential" - if someone as great as me loves him, he must be a worthy person.

The truth is of course that everyone's days are numbered, but most people can avoid contemplating it. It's harder for us.

What helps me most is when I am able to surrender the fears to a higher power; to understand that I do not see all the pieces of the puzzle and to believe that we are all in good, loving hands. That comforts and calms me - but I do not live in that state of grace all, or even most of the time. I'd be much better off if I did.

It's not that I don't trust or believe, I just keep taking the burden back.

So I fight at ground level instead with an array of weapons including healthy denial, hope, focus on today. My favorite is "well, what if I live for 20 years, I'll feel really stupid if I wasted all that time worrying about dying".

I take heart that some at stage IV are apparently cured, or are truly able to manage the disease as a chronic condition. Why not me? Why not you?

Science is running very very fast...maybe we will be the turning point. I had progression after 2 years on herceptin alone and went into a trial that kept me stable for 8 months then failed...just as my doctor was opening a DM1 trial. Coincidence?

As I look at what I just wrote, I'm thinking - hey, that's just a bunch of mind games. True, but so are the worrisome "what if's". If we could all just channel that energy into healing thoughts instead. WAY easier said than done.

Wow, I'm really rambling...and now I've got myself worked up and need to resort to my biggest secret weapon


Breathe in, Breathe out
Breathe in, Breathe out
Breathe in, Breathe out

Over and over...all day long.

Ceese, my heart is with you. You've every right to sing the blues, and every right to walk in the sun as well.

Makes us all tightrope walkers.

Much much love
Chris