On to plan....n? I've lost count

Hey all. So I've been home for a few days trying to relax, honestly I've been sleeping most of the days away.  I've been battling some esophagus issues which are a pain, but hopefully those will be under control soon.  We had a meeting with the doc on Wednesday as to where we are going to go from here, since our surgery went yes, no, yes, no.  Bit of a roller coaster huh?  The issue like I said before was my liver lesions have had a party and grown like there's no tomorrow.  The problem with that was they grew within a period of time that was so short that we realized we wouldn't be able to do surgery because afterwards they would grow and I would not be able to receive chemo yet.  I actually take it as a blessing in disguise that we weren't able to do the surgery.  If we went ahead and had it, my liver tumors would have been growing and growing, possibly even spreading to other organs, and I would have been hung out to dry.  I won't be able to get chemo for a long time after surgery because it is such a major major operation that my body literally just won't be able to handle that toxicity and be okay with it while trying to recover and basically build a new digestive system.  So now we have to figure out how to get back on the path of being able to do surgery.  As we've known from the beginning the only way to cure this pain in the behind is to surgically remove it all.  Right now surgery is not an option; but that doesn't mean it never can be.  We need to get back to a place where my liver tumors are small enough and we know they can stay in check for a period of time long enough where I can recover from surgery.  The chemo rounds that I have done now have run their course, and I am done with them.  I've gotten 6 rounds, and after a certain amount of time, and rounds of certain drugs the toxicity just becomes too much for your body and your organs will eventually start to fail because of it.  So now we are going to throw a new chemo regime at these tumors and hope that they work.  There really is no saying if it will or not, because there really just isn't enough research on my cancer because it's so extremely rare.  The chemo I will be getting isn't experimental, but it's something that we wouldn't normally do.  We have just had a cat scan done, so we will go with 2 rounds of this new chemo plan and do another scan to see how it affected the tumors.  This new round is going to be very different than what I'm used to.  I've been used to staying in the hospital for about a week every time and getting around the clock chemo, but this new one is actually an outpatient procedure.  The first day I will go into the "spa" (special procedures area) and have the IV chemo given to me to make sure I handle it okay.  It only lasts about an hour, and then I'll get fluids for another hour and there's also an oral pill to take.  After that for another 4 days I'll be able to get it at home with my home nurse which is a big change and hopefully will be nice.  The side effects of these drugs are not supposed to be as harsh as the ones I'm used to either.  So the plan for now is try out these new chemos and see how they work.  After that, if these aren't doing the trick there are many experimental phase 1 studies done at UIC that people come to from around the world to try.  Its a strong program, but you never know what will happen.  You may hit a homerun and find a drug that will be at the forefront of your cancer, or you may struggle with bad side effects and have nothing helpful done to you.  That's just the risk you have to take, and we are never going to stop fighting so if it gets to that point we will take our chances and hope for the best.  The goal here in the big sense is to find the chemo that will shrink them down, and then we can hopefully get the surgeons back to agreeing to attempt this procedure.  It's very aggressive what we propose and not all surgeons would be willing to do it.  We were lucky to have our doctor push these surgeons to do it in the first place, and I'm confident she will be able to do it again if the time comes around.  So now that I feel like I've written a 10 page essay for some science class I guess that about wraps it up.  On the lighter side- been hanging at home, loving the fact that my friends are back in town, playing with Bella, and enjoying the weather.  We got a hammock back up in the backyard again which is my favorite, so Bella and I have enjoyed a couple naps on it.  The only problem is she's only comfortable if she's laying completely on me otherwise she feels unsteady since her legs fall through the holes and she's wobbly, so I get to nap with an extra 60 pounds on me, but hey thats love.  Thanks for the support as usual.  I've been using lots of gift cards to do stress releaving things such as get massages.  Thats been something that helps me to relax.. Tony's massages aren't quite cutting it anymore.. (sorry bud)  I've also become very addicted to mario kart on wii and have been privalaged to have my butt kicked everyday by Katie Klemke since you can play online with other people.  She's always up for a good butt kicking.  I hope everyone has a nice weekend!  As always-lots (and all) of my love

Sammy