What We Know Now...

Trip two (short though it is) to the NIH has gone much more smoothly thus far than Trip 1.  We've figured out how to get around to where we need to go both inside and outside the hospital.  (The lab rat is starting to beat the maze!!!)  There were far fewer  worries both in and outside the hospital in general this time around.  I knew how to get to all the places I needed to...  Well mostly.  I have had to ask for directions once, but I was headed in the right direction!  So we've learned a lot at this point. 

We really only had to come for scheduled labs and a follow-up appointment. It was certainly the longest trip I've ever taken to a doctor's office, I gotta tell you!  But, though that felt frustrating to begin with, in the end I'm glad we got here.

So what do I know now?

1)  Arriving during daylight  and when the shuttle to the airport is still running is a GOOD thing.
2)  Security is easier to get through with badges in hand.
3)  How to get to the spot on the 5th floor where they do the supine blood draws
4)  That the NIH can actually take more blood than a Red Cross Blood Drive one tiny vial at a time.
5)  Having a hep-lock for an hour is better than having one for days and days.
6)  How to find the GOOD gift shop
7)  Where the cafeteria is and what time NOT to go...  and also that they make decent dessert
8)  I can appreciate the wonder of NIH a lot more readily when I'm not panicked about impending surgeries, pre-op sickies, breastfeeding bungles, or people who are freaked out by babies being present (though I understand that was partly out of concern for her).  It is an amazing place where miracles happen every day.

As for the serious side of things...  The follow-up appointment was also full of information. Most of it confirmed what we already expected. But still, some ground solidified.


First of all, I am again a medical rarity.  In fact, I'm a medical rarity among medical rarities.  That mean post-op infection that I had?  It was the first one that Dr. Pacak has seen in head and neck surgeries in his 12 years of doing this.  I was the first patient to sprout an infection after this particular procedure under Dr. Kebebew's care.  This apparently happens so infrequently there has been debate about whether to even bother administering antibiotics before and after surgery.  They said in these  types of operations, an infection happens in 1 out every of 2,000 or 3,000 cases.  I gotta tell you.  I'm ready do stop being special.  The docs were all very nice about it all and sympathetic about the extra ordeal I'd gone through.  And one doc--He told me to go get a lottery ticket.  Like yesterday. 
 
Secondly, we got the official word about the pathology of the tumor.  It was well-encapsulated.  It hadn't invaded any other tissue and didn't have a blood supply. That means that it doesn't "look" like cancer.  This is really good news. The doctor was sure to remind me though that you just can't tell with these tumors.  Even the ones that don't "look" like cancer when they are removed may metastasize years down the line.  They all have the potential to be malignant, but you don't really know until you know.  Dr. Kebebew suggested that in light of that I get follow-up scans yearly. 
 
Third, when we were here last time around and the Endocrine Doctor on my case was going over the scan results she mentioned a "possible" nodule on my lung and another one...  bum bum bum....  on my other Carotid Body.  We asked everyone we saw about those findings today.  The lung nodule is most likely 'no big deal.'  A very large portion of the population has lung nodules.  Nodules on the carotid artery are...  well, you know...  less common.  And I'm pretty sure things like Tomas are really all that grow there.  Dr. Kebebew finally gave us the definitive word.  There is something there.  He was aware of it and had reviewed it before my surgery.  He says though that it's too small to do anything about right now.  The bottom line is that this 'something' needs to be surveilled as well.  He said it may start growing 2 or 5 or 10 years down the line and then we'd need to do something about it. Or...  it may just stay a 'something' and be a non-event. 
 
So the over-arching theme is...  We need surveillance of some sort for a while....  or really indefinitely.
 
The piece we didn't get today is the results of the genetic tests.  If this 'something' on the carotid is a 'something' that would eventually become another carotid paraganglioma then, from what I've learned so far, it's VERY likely that I am a 'mutant' and this came about from one of the genetic mutations.  I think that is the determining factor for whether or not they'll want us to continue in the NIH protocol, but maybe the nodule and need for surveillance will force that issue anyway.
 
Kind of a mixed bag, but all in all mostly just confirmation of what we already knew.

Praying for more smooth travels tomorrow...  And that the control tower folks at DCA are awake when we take off in the morning.  ;)  Can't wait to get home to be with my girls and for this leg of the journey at least to finally be all the way over.