Processing Tomasito

Suddenly, cool, calm, and collected Val has gone on vacation (Andrew would dispute that cool, calm, and collected Val ever resided here in the first place...).  In her place is stewing, gloomy Val.  I don't like her as much.  Since we found out about "Tomasito," (the little guy on my other carotid has received his Val-nomer) I've been feeling pretty gloomy.  This cinches the fact that this is something that I'll be dealing with indefinitely.  As in the rest of my life, which I hope will be long.  I had high hopes that maybe I was going to be in the 'sporadic' group of paragangliomas--that there would be no genetic mutation at the root of this and after Tomas I could be done--but this little nodule means that this is likely not the case.  I'm finding that tough to swallow.  I don't want to do this again.  I don't like even the shadow of a possibility that my kids would have to deal with this either...

(Karen at the NIH actually said that "(If I have a mutation) It's not unlikely that you will have slow, clunky tumors growing throughout your body.  No big deal.  We just watch them and deal with them." What an interesting thought.  I'd never thought about a tumor being slow and clunky.  I guess slow and clunky is better than other prospects though...)


On top of it all, we have to figure out how to balance the rest of our life with trips to NIH and Tomasitos and potential clunky tumors.  Did I mention that we're a Navy family?  That we're up for orders?  That Andrew is heading back into Sea Duty and we're supposed to have orders in hand right now, but don't because we were instructed to wait on all of this Tomas-y stuff to know what my Exceptional Family Member Program status would be?  That we might be moving?  That maybe it would be a good thing to move to be closer to the NIH?  That maybe it would be an awful thing to move because we have a fantastic support system here, a home that we love, and stability?  (And did I mention that I'm a horrible mover?  I mean for a Navy wife I'm a horrible mover... )  I guess the truth of the matter is that about now I'd be panicking about orders and heading back to Sea Duty anyway, but adding in Tomasito and a body that is most likely predisposed to growing tumors for a hobby makes that all just a little more overwhelming. 

For most of the Pheo-para folks out there news of a mini little nodule guy like Tomasito would be something to just take in a stride.  I feel like I'm over-reacting by feeling so gloomy about it all.  And the truth of the matter is we still don't know what our genetic testing results are so we aren't entirely sure exactly what we're dealing with.  I should really wait to pull out the gloomy face til we have the whole picture, I guess.  I am a pheo-para trooper light-weight though.  I shouldn't be freaking out.  I shouldn't feel gloomy.  BUT I DO!  I confess to my light-weightiness and promise to feel appropriately ashamed for it.  Right after I bury myself in my Kindle and eat chocolate for a few days (by the way...  we're seriously lacking on chocolate around here.  I really need chocolate.  And fruit...  which would be better for me to hole up with than chocolate, but really let's just be realistic.  Also toilet paper....  *sigh*  If only growing a baby nodule named Tomasito was reason enough to avoid the grocery store...).

On the positive side of things:  1)  After my Mama got sick when considering my dismal family history, it occurred to me that it would be nice to have a reason to have scans from head to toe periodically to make sure I didn't have anything weird growing inside of me.  Guess what?!  I GET TO NOW!!!  2)  Tomasito is a tiny little guy.  He should grow slowly.  3)  I think Tomasito is a great name and it's even more fun to say than Tomas.  4)  D.C. is a nice place to vacation.  Now I'll have a reason to go there twice a year!  5)  I already have some of the best people in the world on the case.  6)  Andrew's command has been awesome and we have a lot of people looking for answers for us on the juggling of it all.  7)  The ever-present joy of blog-fodder.  8)  I'll never have to decide on WHERE to go for a family vacation again.   

I guess we just have a lot of balls in the air right now and that this season, like so many others that we've weathered, is just "fraught," and that hopefully other seasons will shake out that will be less "fraught."  We're moving into a time of pretty major transitions on the heels of a time of pregnancy and gorgeous new babyness and surgery and weird diagnoses.  We're trying to figure out which way is up in all of it.  I guess I need to give myself some room to be in all of that.  The good news is I do have The Rock of refuge and strength to cling to.  I'm clinging.  I'm glad that He holds me fast even when the fingernails by which I've been hanging for a while give out.  I am glad for the moments of peace that passes all understanding when they come.  I am glad that my rock waits patiently for me to walk through the gloomy feelings that I  have to get through first. 

Stay tuned.  The Tomas-saga continues.  And feel free to send chocolate.