Today was a pretty interesting day - to me anyway.  Rich had made an appointment for both he and I with Dr. May for last week but she had to reschedule for this morning.  Rich, being on Medicare, had his leg tens unit supplies provider change and needed a new script for the new provider.  And, I wanted a refill on a script and a chance to talk to her about my situation.

When she came into the exam room she gave me a huge bear hug...have I said how much I LOVE her????  She told me that when she had examined me three weeks ago she had been alarmed and felt that the diagnosis was going to be pancreatic cancer and that I would only have a couple of weeks, at best!  I had felt her concern when she decided to have the ct scan without contrast run asap, rather than wait another day, but she hadn't ventured a guess to me, preferring to have the test run first.  I'm grateful, on so many levels, that it worked that way...I was already concerned!

She was able to tell me about the tumors/masses.  Up until today, I had known there were "some" but the concern had always been about the mass that is in the midline of my abdomen, where the liver, pancreas, gallbladder, duodenum, etc. are all situated.  Dr. Thompson had told me it was a "big, ugly, gnarly mass" but I guess I was still kind of shell-shocked and didn't even think to ask many questions.  And, Dr. Thompson had been preceded by Dr. Pallard, the radiologist, Dr. Palmer, Dr. Culbert, and Dr. May.  My guess is that none of them knew what the others had told me or what hadn't been shared!  So, it was interesting to learn that there are multiple masses, I think there are six.  The largest is 8 cm (roughly the size of a softball), three are in the 7cm area, one is about 6 cm, and another 4.5.  The PET scan tomorrow will provide us more information to determine if  there are any more and where they might be.  These masses are in/on/through the liver, pancreas, and duodenum.  She agreed that surgery, while the standard procedure, is probably not the option here.  However, as the masses increase in size they could impact the function of one or all or even other body functions and said that if that happened they would probably "de-bulk" the offending mass surgically.  But she is as hopeful as Dr. Thompson that they will be able to map the gene that will turn these off and could even "dissolve" them.

Again, Vanderbilt seems to be the "go-to" place for this...but I'm finding myself reluctant where that is concerned as I want a cure...not to end up as a control subject in a research study.  However, I don't know if that is even what would happen....just say in'!

Dr. May also shared that it is still believed that this is "low grade" - meaning it isn't metastatic.  I sure hope so...but again...the PET scan is going to tell the tale.

Next Monday I will see Dr. Thompson again.  I'm sure the PET scan results will be back, but I'm not sure about the advanced procedures since it seems like determining what to do here could take a few weeks...if not more...but both Dr. Thompson and Dr. May feel we have time to figure this out!  And, I'm generally no different than I was a few months ago...just I know what the discomfort is and I feel every twitch or rumble more acutely just because I know! Lol!

Dr. May again reaffirmed that there was no way to test for this, that it wouldn't have been found even now if it weren't for the fact that they are large enough to be causing discomfort.  I told her I was puzzled about this as Dr. Thompson had intimated that this could be genetic and that I had no relatives with this, to which she replied, "that you know of!"  I am puzzled...and I find it extraordinary that Mike, Brad, and Chad have all had pancreatitis and Derk as been experiencing discomfort in this region of his abdomen.  Coincidence?  Probably.  But it sure seems like unlikely odds.  There is just so much we don't know!  

Rich and I also drove up to Morristown for our acupuncture appointment.  Then stopped at 5 Guys for dinner, over to the pharmacy, to the church to practice the organ and finally...HOME...SWEET...HOME! Guess I'll hit the hay as we need to be up early to head to Knoxville for the scan.  With any luck I'll be home by noon and able to get some work done!