Update: PET SCAN CLEAR!!!! Chemo plans...

Wooohoooo!  The PET scan was clear!  This was so huge!  Now that it's clear, I'll explain why it was such a big deal.  I didn't want to freak anyone out before, but if they had found anything anywhere else, it would have put me immediately into the stage 4 category with a 95% mortality rate within a year.  I didn't want to freak anyone out unnecessarily. But we are good! 

From here, I am waiting to hear back about installing the port.  Apparently, the port is something that they install under the skin that will just feel like a bump.  It's kinda like a permanent IV hole, but the skin actually grows over it.  The only stick I'll have during chemo is to puncture the skin covering the port.  But that's not bad.  It's not like having to dig for a vein that may or may not roll.  The port is installed via an outpatient surgery-like procedure.  On the up side, they do put you under, so I'll be out when they install it.  On the down side, I am already taking quite a beating recovering from this last surgery's anesthesia.  But this one should be much less gnarly since I'll only be out for about an hour, and not multiple hours, like the small intestine resectioning.

The nurse said that they were going to try to schedule for this Friday to do that, but might have to do it next week.   Chemo, as of now, is scheduled to start on September 29th.  It will consist of a 2 day process that I will do every other week.  First, I'll go into the cancer center at Plano Presbyterian hospital.  I'll always see my oncologist (Dr. Le) first.  Then, they'll hook up my port to one type of chemo and let it run for around 2 hours.  Then, they'll unhook that one and hook me up to another one for about an hour, hour and a half.  Then, they give me the third one, which I actually take home with me.  I'll get to sport a sweet little fanny pack for 46 hours, and then come back into the office to have it disconnected.  John's excited about decorating it.  I'm a little more skeptical as to the extent we can make it fashionable.  But maybe I could sew a couple of little cover bags to match various outfits.  We'll see.

Dr. Le is a bit worried about how my body will respond to the chemotherapy.  She is sensing (rightfully) that my body is much more sensitive than most.  That, and apparently thinner people have a harder time.  Since I just dropped below 100 lbs, she is expecting that I may have a bit harder time with the chemo.  She is prescribing me some mega-anti-nausea meds, so I am thankful for that.  She is really a sweet, caring doctor.  I like her.  Also, she presented that paper on my case at the conference, where the 8 other doctors looked in depth at my case.  They were all in agreement as to both the diagnosis, as well as the course of treatment, so I feel confident that we are doing the right thing. 

Some of the side effects that she expects will be nausea (of course) as well as a fairly severe cold insensitivity.  As she described it, I won't be able to drink cold beverages as it will "feel like you are swallowing glass shards".  Appetizing... I won't be able to reach into a freezer even at the grocery store!  So weird... But, we'll see what else pops up.  I hope that I don't psych myself into having some plethora of psychosomatic symptoms stemming from my own expectations of it being really gnarly.  My mind is excellent at wreaking havoc like that.

Anyways, that is the main update for now.  There was a whole lot more information, but this is long enough.  OH!  One more thing.  Apparently my "uncommon" form of cancer is SO "uncommon", that it is not even listed in the national registry of cancers.  They list like, everything, and mine is so uncommon that it didn't even make the list!  I knew I was special...