Hi fellow stage IV folks and their caregivers,
I'm really glad Ashlee started this thread, and have read with great interest all of your thoughts on the matter. I guess one of the "gifts" of this diagnosis (and I use the term with near endless ambivalence) is that we have the opportunity, and incentive, to think ahead, perhaps more than people who have not faced a diagnosis such as ours. Every time I go to the hospital, when I check in, they ask me if I have a "living will". YES. Do we have a copy of it? Well, no. (Do I even know where it is? Well, no) Every time I go, I think, wow, I really should give them a copy for my medical records, so they'll know what I want (nothing!) That pre-supposes that my living will will indeed make it to my medical record, which is supposing A LOT for my hospital--but of course, I should make an effort. Long, long before I had cancer, but when I was moonlighting in ICU, I wanted to get a tattoo on my chest "DO NOT COMPRESS! DO NOT SHOCK!".
Thank God, I am not acutely in the decision-making loop yet, but really, my decision has already been made, I guess. I have co-opted it from our dear Gaelen. If I have anything to do with it, I WILL NOT die with chemo in my veins, and when the treatment is worse than the disease, I will quit. One of my dearest friends wants to quit whenever she is on chemo (and I don't blame her for a millisecond) but she always feels so much better almost immediately when it's stopped, so, I keep encouraging her to do the next and the next round, and before she knows it (she says so, too), six are done. How long can she keep doing this? I don't know. She is strong, tough and courageous beyond words. I hope and pray she can keep doing it until during one of these wretched rounds, we will all wake up one morning to a thread entitled: THEY'VE FOUND A CURE!
That's my prayer for each of us, no matter where we are on the journey. Much love to each and every one of my stage IV comrades and family.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo
9/13 ^17th clean PET/CT NED for now