Update: Where do we go from here?

So, we met with the Dr. Le (prounounced Lee), the Oncologist last Wednesday and Thursday.  My surgeon said that she was the best, and who he would take himself or his family to if one of them were to get cancer.  That was super encouraging.  She went over the diagnosis and some details of adenocarcenoma.  (details which I'll sort through later and maybe publish, depending on the appropriateness or level that I want to divulge).  The main thing that she let us know in no uncertain terms was how uncommon (not rare, uncommon) my particular case was.  The reason they had originally thought it was lymphoma and NOT adenocarcinoma (before the surgery) was because of it's size.  It was way bigger than adenocarcinoma usually is.  So size makes it uncommon.  Location also makes it uncommon as there are very very few found in the small intestine.  Adenocarcinoma is predominantly found in the Colon (large intestine).  So size, location, and finally my age, make this type of cancer extremely uncommon, which means there is a lot less research to go on when deciding treatment, odds, prognosis, etc.  One of the super cool things though, is that because it IS so uncommon,  she is actually presenting a paper on my case at a conference coming up.  What that means is that I'll have 8 (count em, EIGHT!) doctors all looking in depth into my case and diagnosis.  Talk about second opinions!  I'll have eight second opinions!  Super cool... 

My level of diagnosis is currently considered stage 2b.  There is 1, 2a,2b,3a,3b,3c, and 4.   So, 2b isn't as good as it could be, but definitely not as bad as it could be.  The main thing that classifies me as a 2b is the fact that they didn't find any cancer in the lymph nodes surrounding the main tumor.  This is huge, repeat HUGE.  I would have a much worse outlook if there had been any cancer in those nodes, because once it is in nodes, it is much much more likely to metastisize (ie: spread) throughout to the rest of the body.  Since the lymph nodes didn't have anything, best guess is that the rest of my body doesn't either.

So, the next step from here is to make an appointment to come in next week for another scan.  What they are going to do is shoot me up with a lot of glucose (apparently cancer is a total sucker for sugar.  Aren't we all?) The glucose will have some sort of dye mixed with it.  IF, repeat IF there are any cancer cells anywhere else in my body, they will show up under the scan.  The cancer sucks up the glucose with the dye, and then it is easily seen.  This is what I need the most prayer about.  For those of you who believe in prayer, I ask earnestly for you to pray for this.  I will be asking my close friends, and anyone else who feels led, to fast the day before or the day of.  I can't stress enough how important this test will be.  Again, we don't have any reason to believe that there will be anything anywhere, but then again, this is me we are talking about.  I don't exactly have a track record of following "norms". 

So, after that, when we of course find no trace of cancer anywhere else (please Lord God), we will talk chemotherapy.  The plan as of now is for me to wait about 3 weeks till I have totally healed from the surgery, and then start chemo.  Chemo, as of now, is planned to last about 6 months.  I am going to have something installed in me called a "port".  From what I can tell, it's like having a gas tank portal in your body where they just open the hatch and put stuff in.  On the up side, this means I won't have to get stuck every time.  On the down side... we're talking about a girl who won't wear EARRINGS because she's afraid they will get pulled or ripped or tugged etc.  Those are my ears.  This is like a hole in my body that could get tugged or torn or whatever.  I don't know if it is actually like that, but that's what it sounds like. 

The type of chemo (for all you google nerds out there) is called Fol-Fox.  Don't ask me what it stands for.  I'll post more as soon as I do my own research (which for those of you who know me, know it's only a matter of time...).  There is no telling how you will react to chemo.  They say everybody reacts differently.  I am praying that I just get really tired, and I'm not hovering over the toilet 24/7.  But we'll see.  Anyways, that is where we are going from here.  Thank you for all your calls and emails, texts, cards, etc.  They have made such a huge difference.  It is really awesome to know that I am not alone in this.  I love you all.