Mayo Day 1

My appointment with my new Endocrinologist went well.  Mayo is quite an impressive facility - the place works like clock-work.  My 9:15 a.m. appointment was right on time.  (The weather threatened to hold us back with fog but we awoke to no fog and had no issues on the drive up.)  The doctor was impressive.  He asked me for an overview of why I was there.  I explained - ongoing management of well-differentiated papillary thyroid cancer and more information on my elevated para-thyroid hormone and bone loss.  He did a very thorough neck exam - more like my second endo - the first one mis-diagnosed me.  The second one saved my life.  She did her internship at Mayo.  My third endo, the one I just left at U of Iowa (she moved away) always did a superficial neck exam.  And now my fourth endo finally has the same thoroughness of my second endo.  It was a good omen.  He felt nothing worrisome upon neck exam.
Then he explained the game plan and the tests.  We'd start with a 24 hour urine catch (finally - I've been asking for this for two years now).  Then he wanted to do a repeat neck ultrasound even though I had one in March.  He wanted a new baseline on his equipment by his techs.  I totally agreed with him.  Then a battery of blood work tomorrow and in his office again on Friday morning to review results and next steps.  He said my Thyroglobulin is high.  I found that interesting as I always considered my tumor marker to be low at 0.4 (currently) and 0.5 (prior test).  Higher standards here at Mayo!  This place specializes in the Endocrine system so I'm where I should be.  He then asked me "what else would you like tested?"  I looked at him funny and said "Well, you're the doctor, so whatever you think."  He replied "Sometimes patients come with an agenda and if you want something tested, now is the time to ask."  I looked at Bob and said (jokingly) "This is like a candy store!"  Seriously, I looked back at the doctor and said, well, the only thing I can think of on top of everything else you mentioned is phosphorous levels...but sure enough, that's part of his parathyroid hormone (PTH) panel that he ordered.
He then asked me if I knew how many lymph nodes were removed from my neck during surgery in 1996.  Nope.  No idea.  I know I had one from the central neck compartment that was positive for metastatic disease.  I know I had another one that metastisized and grew into a tumor and it was surgically removed in my second surgery.  I know I had "lymph nodes" removed but no idea of how many.  He then asked "do you have your operating room notes and pathology reports from your two surgeries?"  Nope.  I requested everything from endo number 2, but that was not in the files.  He said it would be on record at the hospital (Genesis East in Davenport, IA) and I'm to have them faxed directly to him.  Of course, getting ahold of Genesis has been a pain in the rear.  Getting consent forms signed remote control will also be a pain.  I've left two messages and I'm "on the case."  I'm so curious (I'm such a geek) to see these reports myself.  I'm smarter now than I was then and I want to know if I had a total thyroidectomy, a total thyroidectomy with neck dissection (always my assumption),  neck dissection of the central compartment only or of the right and or left compartments too?  No idea - so I hope to learn something.  I now know that my tumor was a 3.2 cm papillary carcinoma on the right and a 4 cm follicular neoplasm on the left.  Those are big.  Anything over 1 cm is considered not a good thing.  Leaving the thyroid bed (metastatic disease) is also not a good thing.  Thus, likely the doctor's concern over a detectable Tg.
Anyway, before I left the doctor's office area all tests were scheduled and the next appointment set up.  Bob and I decided I'd check into a nearby hotel and he'd head home after lunch to care for the dogs and go to work tomorrow.  He'll return Friday a.m. for the follow-up consultation.  My next stop was the lab to get the equipment for the 24 hour urine catch.
Now things get funny.  I walk into the lab and the lab tech opens up a cabinet stocked sky high with bright orange jugs - think O.J. containers only a bit larger.  I immediately started laughing.  She looked at me and I said "I'm so sorry to be laughing but these jugs are screaming 'hey, look at me, I'm holding a huge orange jug and have to catch my pee for a day.'"  Not exacly subtle.  They did provide a bag so it's not totally obnoxious.  LOL
The next appointment of the day was my 2pm neck ultrasound.  We decided to A. get a hotel room booked and B. go to lunch.  We were both hungry and dinner tonight for me is very restricted.  So off to Victoria's we went for a dish of pasta.  Yummy.  Simultaneously I used my phone to get a hotel room with my Marriott app.  There is one right there attached to Mayo - patient rates start at $250/night and go up from there!  One mile away is a Spring Hill Suites for $109...so I'm using the shuttle system that goes all around Rochester - it's free and easy to use.
*** Blog interruptus *** I'm sitting in the business area of the hotel lobby.  A nice lady just sat at the computer next to me to print her boarding pass.  She asked me for help and I knew immediately that she was from out East.  Philly.  Lives in Cherry Hill - I used to live in Cherry Hill as a kid.  She's out here for a second opinion - cancer...coming back in two weeks to have her leg removed.  Sarcoma.  So sad.  She's says "Hey, it's a leg.  I have two little people and I'm gonna be around for a long time."  Humbling.  I'm praying for her - don't even know her name.
So the downside to all this Mayo stuff is that I'm not going to get to the Quad Cities tomorrow evening for our V.P.'s retirement celebration.  I'm bummed about that.  But Bob and I talked and it's too much to go from up here with tests tomorrow morning, then home, then to the Quad Cities then back to Rochester for Friday morning.  One thing I've learned over the years is you gotta take care of yourself sometimes.  This is one of those times.
I'm going to figure out what to eat for dinner that has no fat in it...and gotta eat by 7.  After that, water.  More tomorrow...