Harry Seeward

Neuro-endocrine tumor.  That's what it's called, and that's what I will soon defeat.  It originated in the tail of my pancreas, where it then metastasized into my liver.  These tumors thrive by secreting hormones, which feed the tumor on the local level.  Luckily, the hormones don't really get past the blood-brain barrier.  My tumors secrete some sort of peptide (I'll get the exact name tomorrow) and serotonin. 

Dr. Dawit broke the news to us.  He's an older Indian guy, with a perpetual smile, and a positive, yet cautious attitude.  He's a straight shooter, and I really appreciate that.  I don't want anything glossed over or candy-coated.  I need to know what I'm up against, and how to fight.  Speaking of which, this is how it works.  I will be getting a monthly injection that blocks those hormones from being taken in by the tumors.  If this works as planned, the tumor will simply starve away.  Without those specific hormones, it won't be able to eat, or grow, or spread.  Also, the secretion of these hormones are what caused my symptoms in the first place.  So, that should also clear up the diarrhea.  (woo!) 

Urology met with me earlier in the day.  They are looking at my kidneys.  Renal cysts are some of the most common symptoms for VHL, so they are hoping that the spots they found on my kidneys are nothing more than that, and that they are not a by-product of the pancreatic stuff.  They are going to do another CT scan tomorrow, this time scanning first without a contrast, and then with the contrast.  I will also be getting an MRI tomorrow, I think just of my brain (just to be sure), and a bone scan to cover our bases and make sure that nothing has spread there either.  Nothing is pointing that way in any of my labs, they just want to make sure.

Today they removed 700mL of fluid from my abdomen.  They were expecting to get between 2 and 3 liters, but the pocket must have shifted.  This was maybe the coolest thing I've ever seen done to me.  Pretty much, they numbed the area, and then made a tiny slit with the scalpel, and then shoved a straw into my abdomen.  This straw was attached to a long tube and needle, that was poked into a 1 liter glass vacuum bottle.  Just like tapping a keg, the liquid just sort of sprayed out into the bottle.  It was fantastic.  The color was a bit like this: http://www.youtube.com/watch?v=AeyqS9BDPds  

Also, my neighbor, cut off some sort of drainage tube into his abdomen today.  By cut off, I mean, he went into the bathroom and cut the tube coming out of his body.  The doctor came in and told him that he was lucky he didn't cut any more since it would then require surgery to remove.  It's been a blast.  This was happening while my doctor was pushing the straw into my abdomen, which caused me to laugh.  Laughing is not the optimal thing to be doing while a straw is being inserted into your abdomen. 

Tomorrow I get more fluid drained, while they use an ultrasound machine to locate it.  This will hopefully ensure full removal.  Tomorrow is going to be busy, so Heather went back to K-zoo, which I am glad for.  This has been pretty tough for both of us, so I'm glad she'll be back with the dogs and her brother and sister-in-law.  They are tremendous people and will take great care of her.  With any luck I might be out this weekend, but the safe bet is more like Monday or Tuesday I'm guessing.  I'll keep you all updated with more tomorrow.