I figured I would say hello update

Hi everyone. My husband of 13 years (he's 55, I'm 43) was dx in January 2011. This is a guy, by the way, who never missed a day of work in his life for illness (and only missed minimal days pre-surgery when he crushed some vertebrae!)

So~ we did the initial endoscopy that found the tumor (located near the opening for his stomach) on January 27th (he was having trouble swallowing, but was still eating steak); once that was found we were plunged into the flurry of activities and events that i know you are all familiar with, too: another EUS, consultations with a radiation oncologist and hematologist/chemo doc, a PET scan, CAT scans, liver biopsy, more EUS's with "roto-rooter" (argon beam cauterization- twice) and finally, a second opinion at Moffitt Cancer Center in Tampa.

After all was said and done, everyone agreed: Stage IVb. Liver, lungs, regional nodes. Not a candidate for radiation or surgery; recommend palliative care chemo...

So, he had his first chemo treatment on 3/14/11 - EOX, except he didn't do the "X" part, which is Xeloda, because the E & the O made him violently ill for 2 weeks. It shook him to the core; he lost alot of weight. They did NOT put a feeding tube in so it was all about me & the boys (our sons are 27 and 21) trying to get him to eat something, anything! He was miserable and spent those 2 weeks (plus a little more) doing nothing but going from the bed to the back porch where we fixed him a bed (we live in the country, surrounded by trees, and spring was coming, and I think that did him more good than anything).

He has decided against doing the I.V. chemo anymore. He told the doc he would *try* the Xeloda, but so far he has not. He's been worried about what it might do. He says he would rather have a few good months of nothing wrong than to have two weeks of being sick, two weeks of trying to get over it, and then starting it all over again, just to live a little bit longer.

He's eating a little better now (yay,finally!) but still eats nowhere near the 2,000 calories per day that docs have been recommending. I call him my Cowboy for a reason-he's rough and tumble, and likes to be outside (HAS to be outside) and is used to eating only 1 big meal a day (coffee for breakfast, sweet tea for lunch). I am trying like mad to re-train his thinking about meals..and we now eat outside. He has to regurgitate something before he can eat...I am thinking it's time for another argon beam cauterization (we call it roto-rootering). He's still eating little bits of mainly soft stuff-rice, Ensure drinks (he wont drink the high calorie carnation stuff, and he doesn't want ice cream) and oh, his current fave: banana and mayo sandwiches on sunbeam bread.

It's a weird place to be, where cancer patients and their families are. Trying to balance work and home and finances and insurance stuff and running interference on phone calls and visitors when necessary.. its alot of work. Mostly, though i am absolutely grateful for every minute we get to spend on the back porch watching birds and big bumblebees and flowers and trees, feeling breezes and just loving each other. I love him with all of my heart. And I keep feeling like I am missing something; there must be something I am supposed to be doing....something else. He's a stubborn cuss (said with love!) and I also know ultimately everything is his decision. I will support him in all decisions. I do gently press to take the xeloda, however, because it is supposed to be less intense than the other chemo and he can stop it if he decides no more. But if he doesn't try the Xeloda, I will call hospice, as the Dr's office suggested. The Dr. at Moffitt Cancer Center told us that almost more important than chemo at his stage is "eating sleeping and pooping" on a daily basis. I get that. He wants to feel human.

We're also waiting for the biopsy results for the HER 2 test to come back..

What do i do? Am i missing something? Sometimes i feel like we're just "accepting" but I'm not sure how to fight. The other thing is, even though i say "we" -we went to the doc, we tried this-Cowboy is the one who calls the shots-of course, it's his life. I just don't want to think i did him a disservice by not ferreting something else out. Suggestions?

Thanks in advance for anything you can offer-courage,wisdom, hope, faith, good juju vibes and advice are all gratefully accepted- and blessings back to all of you, for sharing in this journey. xoxo