A List of Pee Bucket Awesomeness

I got back a few days ago from a follow-up visit at the NIH and that means it's time for a Tomas Blog update.

So, if you have a pheochromocytoma or a paraganglioma, or even if you're just thinking that you might have one and you're trying to get a diagnosis, you will become comfortable with carrying around a bucket of your own urine.  The deal is that one of the diagnostic tests of pheo/para is a 24 hour urine catch to screen for heightened levels of catecholamines and metanephrines--the trademarks of active tumors.  So they hand you this big jug--orange or brown.  They pour in some nasty smelling preservative.  And if you're a girl, they give you a 'hat' to put in your toilet (don't be mistaken and put it on your noggin!) to catch all your wee for an entire day.

It's pretty fun stuff.

I almost always get the giggles about a portion of it.  And as such, I thought I would compose a short list of Pee Bucket (I almost typed Bee Pucket which is equally amusing) awesomeness.  You ONLY heard it here at the Tomas blog, right?

Without further ado, the list:

7 Things that are awesome about carrying around your own pee

1)  Finding a place to refrigerate it when you aren't at home.  Let's just say that conversations like, "Do you mind if I park my bucket of urine next to the food in your fridge?" are all kinds of fun.
2)  When you finally realize that it would be less embarrassing to just keep a container full of ice in your room to put your pee jug in, you get to test the bounds of true love by asking sweetly if your loved one would mind going downstairs to get some ice for your pee.  In case you were wondering, Andrew passes this test of love with flying colors.
3)  The only time I can EVER be accused of leaving the seat up on the toilet is when I'm doing a 24 hour urine.
4)  When visiting a large medical institution you can immediately pick out the other Pheo/Para patients by their ever-present 'jug.'
5)  I'm told that when you aren't issued a 'hat' and you are a girl you can get seriously mad aim skills.
6)  You can freak out friends and family members by offering to get them a glass of the 'special lemonade.'
7)  The folks at the lab are always totally grossed out.  I've gotten a lot, of, "PLEASE sit that over HERE!"  with priceless facial grimaces from these so-called professionals.  Gotta love making medical professionals squirm.

I was hoping for a top ten, but perhaps it can be added to as I  spend more time with pee buckets.  And I'm sure I WILL continue to spend time with them as part of my follow-up.

As far as the update from the NIH, the visit was mostly low key.  We did our best to make it a vacation and we visited the National Cathedral as well as Mt. Vernon and Gettysburg on the way out.  On a side note--did you know that you can go up 7 stories in the National Cathedral to get a view that is probably better than the one from the Washington Monument and it's FREE and there's NO LINE?  Seriously.  Tuck that one away for the next time you go through DC.  And another travel trip?  It might be best to avoid outside venues like Mt. Vernon when it's 107 degrees outside.  Still, we had fun.  And got to sit in those cool chairs overlooking the Potomac

We met some pretty incredible people on their own Pheo journeys.  I was a little alarmed, to be honest, at the number of folks I met there this time around dealing with metastatic disease outside of the presence of a known mutation.  That said, it's always an honor and a privilege to me to be able to hear the story of other people dealing with these tumors.  I've been so blessed in so far being just a 'one and done' case and one that was relatively straightforward at that.  The havoc that these tumors can wreak on a person's life is just massive.  But the fighting spirit, grit and fortitude displayed by almost everyone I meet is inspiring.  They don't call us Pheo-Para Troopers for nothing.

Thankfully, the information we got while there was mostly great news.  No sign of recurrence or any other such 'Tomasities.'  Dr. Pacak said he was very certain that the mass on my left carotid, previously thought to be a possible nodule/baby tumor, is just lymph tissue and not anything to be concerned about.  There always has to be an incidental finding or two so that my Endo. Doc. there can say the word 'N'Duule' a few times in her charming way.  I do have a 'lesion' on my spine which was noted on my CT scan as being of possible concern, but it has been ruled as most likely a hemangioma--a very, very almost always benign no big deal kind of thing.  So we're gonna take that news and roll with it.  I gotta tell you, I'd rather be told that there wasn't ANYTHING hanging out on my spine but if there has to be something there I'm glad that a couple different 'super-experts' have ruled it absolutely nothing to be concerned about.

Dr. Pacak said on a scale of 0-10 of severity of cases he sees mine is a 1 and that he thinks that it's very likely that I'm done with this song and dance.  That is also very reassuring news.  Gives me a bit of survivor guilt all the same, but I can deal with that in a stride these days.  Given that information sometimes I wonder if there is any reason for me to continue to be enrolled in the NIH protocol.

No matter what though I will continue to be vigilant in SOME form of follow-up and I remain indebted to the  NIH's protocol for taking on my case and putting the eyes and hands of world-class experts on my case even if it is one of their 'easy ones.'  

In general I'm starting to settle into the good news of being a 'non-mutant' (on our Facebook group we call ourselves 'just plain freaks.')  I'm grateful that in my better moments I have a heightened perspective of life laying out in front of me, a gift each day, even on the grumpy ones (like today).  My troubles in life have shifted from being a 'pain in the neck' to a 'pain the ass' with a herniated disc that has been not at all enjoyable, but for once, I guess it's nice to have a 'regular old not so scary medical problem.'  I have my moments of still being a little messed up about it all, but mostly I'm glad that I can proudly state that, "I survived Tomas!"  I even have a coffee mug to prove it!