Loose Ends

Let me start this by saying that when I write here I am constantly thinking that other "Pheo-para" people must just shake their heads at what I write.  So let me just say that the opinions and thoughts expressed here are not necessarily those of all Pheo-para people.  Everyone else seems so much tougher than me.  I guess I just need a tougher skin because when I think of all these things I just feel so vulnerable.    All that said, this IS how *I* feel, and even if I am a wimpy light-weight I feel better getting it out of my system.

A cartoon that a friend who had dealt with metastatic disease shared got me to thinking.  The cartoon dealt with cancer survival rates and what they really mean. She has been through so much more than me and I certainly don't pretend that my worries are anything compared to what she and others who have battled out and out cancer have dealt with.  But it did get me to thinking about the flowcharts of uncertainty that seem to come with the territory of Pheo-para stuff.

One of the things that gets me is all the "Loose ends" involved in this disease.  I'm always confronted by those loose ends when I talk to people about it all.  And again, I love when people are interested and ask questions.  I love that people care enough to want to know.  But I find the loose ends and my feeling of being at a loss when trying to answer questions disconcerting.

Typical conversation:

Person:  "So...  How is your health?" (the awkward vague question--which I appreciate because it means person cares).

Me:  "Oh, I'm doing pretty well."

Person:  "So they got it all in the surgery right?"

Me:  (Not sure how much information they really want), "The surgery was successful.  They got the tumor out."

Person:  "Oh good.  So it won't come back?"

Me:  "Well, it could.  And it looks as though I have another one on the other carotid.  We're kind of in a 'wait and see' pattern with that."

Person:  "Oh.  Well...  But it's not cancer....?"

Me:  (I still don't know quite how to answer this because it's like it's mostly 'no' but kind of 'yes' and I'm hearing more and more that some people DO consider it to be cancer, just encapsulated cancer (like prostate cancer often is), that has a lower likelihood of spreading, but all the information you can find on the net says, "benign until it metastasizes, so 'no until yes,' which we all know confuses me, and this is a really long and ridiculous run on sentence with lots of commas and I'm just going to leave it because it is parenthetical and now completely off topic)  "Well, um...  Hopefully not, but it does have the potential to metastasize, and then it would be considered cancer.  So we just have to wait it see."

Person:   "But you'll be out of the woods in say 5 to 10 years, right?  As long as nothing else shows up?"

Me:  "Recurrence or metastases can happen anytime after.  Sometimes it occurs as early as a year or two later, and sometimes it's as far out as 20 years.  So it'll be really important that I get scans at least yearly and keep tabs on things.  So....  we just have to wait and see."

Person:  *shrugs*  "Well, we all have something, don't we!"

Me:  *nods politely*

I don't like the idea that "most of the time" the disease behaves one way but that there is story after story after story about variances from that pattern.  I already apparently have variances to that pattern because of the nodule (Tomasito) hanging out there even though the initial genetic testing came back negative.   It feels like it's growing to me, which scares me.  Since we're waiting until I'm done breastfeeding to go back to the NIH so they can irradiate me to their hearts' content, I'm kind of in a no-mans land of information.  I'm hoping that once I finally get to see the endocrinologist that I've been fighting tooth and nail for a referral to that they'll want to do a scan and have some more answers for me.  Right now I'm left wondering lots of things.

Like...  If it's sporadic and bi-lateral lesions almost never happen outside of the presence of a genetic mutation (the stats that I could find said about 5% of the time and come on...  having this at all is super rare, so we're talking super rare on top of super rare), why do I have this nodule or mini tumor (which is actually already over a centimeter in one dimension)?  Is there another mutation that I wasn't tested for at play?  Could there have been a mistake with the testing (NIH is amazing, but I'm human and so are they and so I still wonder)?

If I have bilateral disease what does that mean with odds of recurrence and metastases?

Will I need another surgery?  When?

I hear murmurings about some other risks with a second surgery--Probably not a high rate for these risks, but they are there...  How will I fare with that?

Or will I even need one?  Maybe this could be something else?  But if so...  WHAT COULD IT BE?!

I keep thinking of Jesus saying in Matthew 6, "Who of you by worrying can add a single hour to your life?"  I translate it to, "Who of you by worrying can keep a single tumor from growing?"  And I know it's true.  And I try not to worry.  And I try just to trust.    I can't trust that bad things or worse things won't happen because bad and worse things do happen each and every day.  I can trust that God is good and working for my good in all circumstances.  So whatever happens I trust His goodness.

But that leaves me still wondering what will happen.  Still grasping for answers.  And still frustrated at the loose ends of this disease.  Because even when you get the surgery and you reach the 'ending point' for treatment of a given tumor, it's never really over....

P.S. Reading through this in light of the rest of the blog I realize it must seem like I just say the same things over and over again.  I guess that's because none of the concerns have gone away.  Little details have just shifted from time to time.  Still, I'm still feeling it.  I might as well write it.  I do apologize for the redundancy though.  Next time maybe I'll just write, "Lather, rinse, repeat."  Probably not though.  ;)

Rare Bird Stuck in Red Tape

This post was going to be written inevitably.  It was just a matter of time.

Let me just tell you that having ongoing medical needs and needing to be seen within the framework of the bureaucratic insanity that is the military medical system (thankful for my health care, though I am!  I really am!) is frustrating in epic proportions.

At this point we're in a holding pattern with the NIH.  I asked about the nodule on the carotid and they said, "Oh yeah.....  Well.  Come back and we'll scan you."  And I said, "But I'll freak you out with my scary breastfeeding infant again.  How about I wait."  And they said, "Ok.  We'll wait and then when you come back we'll scan you til you glow!"  Ok, so that wasn't exactly how the conversation went.  But the point is when Lainey is weaned we'll proceed with them.

In the meantime, it's our hope to find a local endocrinologist who can keep an eye on me as well--without us having to travel 3000 miles.  Why?  Well.  Because I need to be scanned at least once a year to make sure Tomas doesn't come back or show up in places he's not supposed to.  And because there is this other nodule (Tomasito) that needs to be watched.  And by the way, having one of these on the other side outside of the presence of a genetic mutation, from what I can glean from just reading, is kind of odd.  I have lots of questions.  And I'll wait to talk to the NIH folk, but if I can get information in the meantime I want to.

In order for me to go see an endocrinologist here, I need a referral through TriCare.

In order to get a referral through TriCare, I have to go see my Primary Doctor.

Except I don't have a Primary Doctor because my Primary Doctor left the clinic after the clinic said to him, "We think you're a great doctor.  How about you keep working with us, and how about as a bonus, you can do the same job for less money?"  And my Primary Doctor being the intelligent man and quality doctor deserving of pay that he is said, "Um...  NO."

Which means I have an "interim" primary doctor.  With very bushy eyebrows.  And he's ok.  But he doesn't know my history and he is NO Dr. C (Primary Doc).  For that matter, my Primary Doc had a lot of catching up to do once I went back to see him after my pregnancy, because after all, it was the doctor who saw me during Alaine's pregnancy that did all the initial diagnosing and referring.  He was a fabulous doctor and had stayed in the loop pretty well, so it wasn't too hard.

Really all I need is for SOMEBODY to type into their little computer screen that I need a referral to an Endocrinologist at the University of Washington so that I can then call the referral office and say, "THIS DOCTOR is the guy I need to see."  Seriously.  It's just a matter of a few key strokes.  (Which, ironically, is another spot of red tape.  I have to have the doctor make the referral, but the doctor cannot request a specific doctor.  So I have to wait for the referral to be put into the system and then I have to call the referral gods and say--Hey--I can't just see any Dr. Joe Schmuckatelly.  It has to be THIS guy.  And then they decide if they're going to honor my request or send me to Dr. Schmuckatelly.  So far they've been pretty great at working with me and I've only seen a couple of the Schmuckatelly varieties.)

So I call TriCare and I say I need to be seen.  And I give them my Sponsor's social, and my current phone and my non-existent alternate phone and my address, and my bra size and the length of my middle toe on my left foot and they look in their system.  I told asked them, "Look, can I be seen by someone who knows me?  Like the doctor who followed my pregnancy?"  

No.  

Ok.  Then.  What do you have with with my interim primary doc?  

Nothing for this calendar.  We'll transfer you to the clinic.

So I'm transferred.  I again give them my sponsor's social, current phone, n.e. alternate phone, address, bra size, and toe length.  And I say I need an appointment to get a referral.

Let me just say at this point that when I'm having these conversations and I am talking to these people who I know are just doing their job within the ridiculous parameters that have been set up but I'm nonetheless a littel frustrated that I get a perverse kind of pleasure at throwing them for a loop about why I need to be seen.  That conversation goes something like this:

"I need an appointment."

"Reason?"  

"I need a referral to an endocrinologist?"

*slightly confused tone of voice?*  "Ok.  Why?"

"Because I had a Carotid Paraganglioma removed from my Carotid Artery in February of this year at the National Institutes of Health in Bethesda, Maryland."

*stunned silence*

Then, "Ok Mrs. Roseberry, we have an opening next Monday."

Sure, I'll take that.

Guess what?  

It's not with my primary doctor, or my interim primary doctor, or the doctor who followed me for my OB care.

It's with a totally new doctor who doesn't know me from Adam (or Eve).  And he ISN'T my new primary doctor.  He's just a guy kind of connected to my non-existent primary doctor via clinic.

This will be fun.....  *maniacal gleeful giggle*

Congratulations, You're Not a Mutant--Now What?!

A year ago Saturday was the day that this whole shebang began.  My doctor called on a Friday evening before he left town for a week because he didn't want me to have to wait and wonder while he was gone.  He spent at least 30 minutes on the phone with me explaining what a 'carotid body tumor' was.....  and doing so by looking it up in Google and Wikipedia himself.


Within a month I'd discovered that people who were diagnosed at a young age often had tumors as a result of a genetic mutation.  If you've read here long at all, you know the rest:  Genetic mutation = predisposition for growing tumors.  Higher likelihood of recurrence, malignancy, or metastasis.  For a year I've wanted to know 1) WHY did this happen?  2)  Is it going to happen again?  3)  Am I going to get cancer?  And to help answer all those questions I needed to know do I  have a genetic mutation??


One year and two days later, I have an answer to that question.


NO.  No, I don't have a genetic mutation.  I am not a mutant.  


This is good news...  Really good news.  


And I am shocked.  I mean...  Knock me over with a feather, this was not what I anticipated at all, shocked.


As soon as I was in contact with the NIH we were talking genetic mutations.  It felt like I just fit the profile, but maybe that's just how I read it.  The location of the tumor plus my age plus finding out about the nodule on the other side.  It just made sense.  Plus, I have this dismal family history of cancer, cancer, and more cancer and surely that ties in with it all somehow, right?  From the beginning, Karen didn't talk to me so much in terms of whether or not I had a mutation, but which one.  


Today I got an email from Karen.  One line.  "Hi Val.  You are negative for any mutations.  Karen"


This is good news.  It's great news.  It is.  But I have no idea how to process it.  I don't know what to think.  I've gone so long trying to figure out which one I had and what that meant that it's actually a lot to process to find out that I DON'T have a mutation.


It also leaves me with a lot of questions.  Like:  Why did this happen in the first place?  And...  Does this mean that I WON'T get more tumors or is there still a chance that I will?  And....  How do I need to be screened?  


It answers a big question, but it doesn't conclusively answer all of the questions.


The great news is that hopefully, hopefully this means that the girls have nothing to worry about.  They won't need to be tested and screened.  They won't ever have to deal with these tumors or questions or worries or wonders.  THAT is fantastic.


I don't know what my deal is.   I should be all smiles and excited out of my mind.  Instead I just feel....  confused.  I'm hoping that as time goes by, the happy will come.  I'm sure it will.  


Sinking into the happy or not, Andrew brought me flowers today to celebrate.  We're going out to eat.  I'm going for a walk/jog, getting into the sunshine, and maybe having a squirt gun fight with my girls.  


It's been a long, hard year.  But there's good news today.  

But It's Not Cancer Right???

Abbie had an end of the year school picnic at the park today.  She's been in the two day preschool class at the same preschool where Carolyn attended 3 day preschool last year.  For that reason there were quite a few Moms there that I had gotten to know from Carolyn's class last year.  Being the socially inept little duck that I am I ended up just mainly chatting with a friend of mine from church (who I'm really enjoying getting to know, by the way), but seeing these people made me think of how much has happened since last year.  When I finally did speak with one of the Moms that I used to chat with last year she was surprised to find out that I'd had a baby.  As I was driving home I thought to myself, "Girl!  You don't know the half of what kind of crazy has happened since I last chatted with you!"

In situations like that I don't usually offer up a whole lot of information about Tomas.  Or, I guess...  I play it by ear depending on the person.  Part of the reason is that it's all just so hard to explain.  And part of that is because of the 'c' word factor. 

The 'C' word factor has kind of followed me around like a rain cloud during this whole experience.  And I realized today that I've been reluctant to give myself much grace partly because of the 'C' word factor.

As I've mentioned before paragangliomas are tricky.  With many masses you take them out and look them on pathology slides and you know 'cancer' or 'not cancer.'  With paras and pheos you don't know unless there is a metastasis somewhere in the body where they don't normally originate.  That can happen years or even decades down the line.  Most of the information out there broadly categorizes them as 'benign neoplasms.'  Most of the time they AREN'T considered cancerous, but basically even with that 'probably not' you still have that whisper in the back of your mind of, "but it could be..."  And then you have the different genetic mutations that come into play.  Past that, from what I've read and from the stories I've heard it seems like when a hard and fast rule is made about these tumors a case comes along to bust it.  So while  the cancer issue is considered to be a factor usually only with larger tumors or with certain genetic mutations there are still cases of people with sporadic disease and/or tiny tumors who have metastasis pop up and end up with malignant disease.  Because of all of that, some people--even some medical professionals--DO consider them cancer from the get go, but in the form of a 'low grade malignancy,' AND there are a lot of varying opinions.  To a point that makes sense to me. 

On top of that, even when they aren't cancerous they still need to come out.  They still represent a malady in the body.  It's still a tumor.  They can still compromise systems in the body.  They can still wreak havoc.  They are still scary. 

That totally confuses people:  I had a tumor.  But the tumor wasn't cancer?  What?!

And in that confusion I find a frustrating feeling:  Sometimes I almost feel like having a paraganglioma is something akin to having the red headed step child of diseases.  Because as a patient you don't fit into anybody's easy little boxes.  You don't even fit into doctors' easy boxes  How many times have been trying to explain Tomas to someone and their eyes glaze over and they say, "But it's not cancer.... right?" 

And in this "right?" I hear a lot of things that aren't necessarily said but may or may not be implied, "So it's not a big deal.  So we'll mentally classify you in the 'worrisome but fixable' category of the prayer chain right next to Uncle Stewy's trick knee and cousin Sophia's infected toenail surgery.  So you really shouldn't be scared.  So you're  really not fighting a hard battle.  So your feelings are dismissed."

I'm the daughter of a woman who died of lung cancer.  Believe me when I tell you I get what a scary deal cancer is.  And I'm glad that what I had is probably not cancer. 

I still had a tumor.  A rare one.  Rare enough that I chose to travel to the other side of the country for it's removal.  I still lived with something inside of me that shouldn't have been for months.  I still agonized about whether or not catecholamines would be secreted when I delivered Alaine.  I'm still wondering what will come of the 'nodule' on the other side.  I'm still wondering if this is it or will there be more.  And I'm still not sure that the 'c' word isn't going to rear it's ugly head. 

Some people with pheos or paras that are secretory have to deal with hypertensive crises, cardiovascular "events," high blood pressure, panic attack sympotms and emotional variability due to the release of catecholamines and metanephrines  from their tumors.  That's not the 'c' word, but you better believe it's pretty darned serious.  People with a genetic mutation and a predisposition to growing these tumors have to be vigilant in watching for symptoms like that even when their original tumors weren't secretory.  And then there's the scariness of having something growing inside your body without presenting with obvious symptoms.  Tomas was one of the non-secretory tumors with no symptoms other than a bump.
In short, it might not be cancer, but it's still scary.

I think about American Cancer Society events and t-shirts that say 'survivor' and I wonder if on the other side of those 'But it's not cancer right?' questions is the implication that I haven't survived something major. I'm sure no one intends for that benign (see how afraid of the 'c' word we are with the language that we use) little question to spur so many wonderances in me.  No one intends to make me feel like my tumor wasn't something to be concerned with.  And really the issue here is me and my own brain and feelings about the issue.  Which leads me to the next paragraph...

Worst of all is the 'C' word factor and myself....  Because I taunt myself with it.  "Yeah it was scary, but it wasn't cancer, so stop it.  Yeah, you got through it, but it wasn't cancer so it's not like it's that big of a deal."  "It's not like you needed chemo or radiation..." quit stewing about it.  I *feel* less deserving of the survivor t-shirt because of the 'c' word factor.  Because if it had been the 'C' word....  THAT would have been something to have survived...  but it's no big deal to survive a 'benign neoplasm.'  And 'Paraganglioma Survivor" is kind of a mouthful. 

So I beat myself up and act like I haven't really been through anything.  I mentally get frustrated with being classified in the 'needed surgery because of an ingrown toe nail category' by others, but I put myself there constantly.  I don't give myself the grace or the space I need to process because always a little part of my brain is saying in a sing-song voice, "But it wasn't cancer."  And I expect myself to not have feelings about it all three months after surgery.

This is a weird disease.  Everyone who has it feels rare and alone as soon as that first doctor looks at them and says, "I've never seen this before....".  When it does swing to the cancer side of things that's absolutely terrifying and even more rare.  When it doesn't, at least from my experience...  We feel almost guilty for that.   It's a twisted kind of survivor guilt, I guess.

But it occurred to me today, I AM a survivor.  I am a survivor of a rare disease.  I survived a year of fear and anxiety and frustration.  I survived a surgery on the other side of the country.  I survived the struggle of  finding a doctor who knew what I was talking about when I said the word 'paraganglioma.'  I survived having a baby in the midst of the what-ifs that Tomas caused.  I survived having something so rare that when you encounter someone else who has had it you have a little mental party because even though you don't want anyone to have to go through something like this, it feels so good to NOT be alone in it.

So in answer to the "Right???" implications and feelings I can say this:  No, so far it doesn't appear that Tomas was cancer.  Just the same, what I went through WAS scary....  It was terrifying.  And the implications of having Tomas and the what ifs that are still out there continue to be frightening.  More than that though I *am* a survivor.  I survived Tomas.  I am surviving the wait for my genetic mutation results.  And God willing I'll keep surviving what ever else Tomas and his minions may throw at me.

(P.S.  No, Still no news on the genetic testing...)

Waiting... Wondering.... Choking on Chicken

We’ve been in waiting mode since getting back from the NIH.  Everything has felt quite up in the air.  First of all, we were waiting on orders.  Where are we going to live?  We’re headed back to Sea Duty.  What will managing Tomasities look like on Sea Duty? Secondly, we’ve been waiting for the genetic testing results.

I was told that I’d be tested for the SDHD/SDHB mutations only as part of the NIH’s research protocol.  I was told that it would take at least two months to get them back. 

It’s been two months and three weeks.  Not that I’m counting or anything.  And it’s not like I wake up every day and wonder if today is the day that I’ll get the call.  It’s not like I hold my breath every single time the phone rings and feel both let down and relieved when the caller I.D. doesn’t say, “Health and Human Svcs.”  It’s not like I’m sending an email to Karen every week saying, “Are the results in yet?” leading her to put me on her top ten list of pain in the tuckus patients.  It’s not like I’m feeling a little nutty about it all.

Really.  It’s not. 

You don’t believe me, do you? 

Last week we got the news that we’d most likely be staying here.  Today we got the hard copy orders.  So that’s settled.  We're gearing up for Sea Duty and with that comes plenty of it's own wonderings and ambiguity, but at least we're not planning a move on top of it all and we know where Andrew will be employed.

So now I just need to know if I have a mutation/which one it is. 

What’s the big deal about the mutation you ask?  People kind of look at me funny when I say that I'm anxious about it all.  Talking about it in terms of letters and mutations seems to remove people from thinking about it as tumors and disease.  What's the big deals if a few of my genes are 'misspelled?'

I’m not sure if everyone in Pheo world would completely agree, but from where I’m sitting here it basically feels like I’m waiting to find out which disease I’m being diagnosed with.  Or if I have a disease since a small part of me (and it might be the denial part of me) is still holding out hope that this could all just be sporadic.

If I find out that I have the SDHD mutation it will mean that I’m predisposed to paragangliomas and potentially pheochromocytomas.  People with the SDHD mutation most often get them in their head and neck, but also sometimes in other parts of the body.  I may have an adrenal pheo at some point.  There isn’t a straight line progression.  It doesn’t always happen the same way.  And some people with SDHD, despite the fact that it’s considered low risk for malignant potential (around 10%), do indeed end up having malignant disease.  The ‘genetic imprinting’ of SDHD would mean that my girls “most likely” would not develop tumors themselves, but could pass them on to their offspring if they were carriers for the gene.  If I have the SDHD gene I will continue to be scanned twice a year and can back that on down the line other tumors will probably grow, though I suppose it could be argued that they might not.

If I find out that I have the SDHB mutation it would still mean that I’m predisposed to paragangliomas/pheos.  It will mean that there’s a higher chance of them being functional and/or in the abdomen.  It will mean that there is a much higher chance for malignancy (38-83% in carriers of the disease).  Again there's no predictor for how or if it would all progress, but we'd know more about what to look for.  The genetic crapshoot of SDHB would mean that I could have directly passed on the mutation to the girls.  Again, I'd continue to be scanned twice a year and we'll deal with what we find from those scans.

I’ve never in my life hoped more fervently to get a ‘D’ instead of a ‘B’ on a test.  I really don't want to have either of them.  But the truth is, whichever one I’ve got, we’ll fight it and we’ve got the heavy duty folks on the team already.  They’ve got my back and I trust that the procedures they follow will help us to root out these tumors so we can deal with them early and decrease the risk of complications.

I just want to know so I can wrap my mind around it, and so I can stop feeling crazy every time my phone rings.

In the meantime, since I just can’t let life be too boring I went ahead and choked on some chicken and had an emergency endoscopy under general anesthetic Monday evening.  That was a typically Roseberrian crazy song and dance complete with an EMT body checking an agitated patient who had gotten in between my husband and our kids, and my being grilled by the surgeon doing the Endo. About the Tomas Surgery for a good 20 minutes.  At least I got to chill out with some Valium for a few minutes.

We’re through that though, and things are fine and despite what I’ve written above, I’m not sitting and babysitting the phone and I’m not paralyzed with fear.  I’m just anxious to know.  Anxious to process it. Anxious to start to settle into what we're dealing with. Do you think anxiousness could make you choke on chicken?


Could be....

The really Rare Luck I've got

I spent some time today reading through the patient stories at the Pheo Para Troopers website.  You should too. 

After reading there, my thoughts today are this:  Do you have any idea how incredibly lucky I am?!  With all of the 'lightning bolt and lottery ticket' odds that I've been hit with so far, I think the biggest 1 in a million happening that I've been blessed with is this:  Somehow or another, I got the information I needed at the right times to talk to the right people to get me to the right doctors to get the treatment that I needed right away. 

When reading stories like these here and in other places online I've felt, in a typically neurotic Val fashion, inadequate because of the simplicity of my case so far.  Inadequate isn't quite the right word.  I guess I've felt unworthy of notice or care or of world-class doctors to help me walk through my case.  I've felt, somewhat rightly, that held up to what other people have faced, my worries and frustrations and fears have been petty.  After all I have  "Only a carotid paraganglioma,"  "Only another nodule."  Reading through those stories those onlies are just emphasized for me even more.

I read Matt, Erin, and Tisa's stories today and one of the things they all had in common was going to doctor after doctor after doctor and getting treatment that was good, but that missed something.  Those missing links and pieces of the puzzle that weren't picked up on right away, even by doctors who I'm sure were very good, inevitably made these journeys that were already arduous even more difficult. 

It's true that I "just" had a carotid paraganglioma removed and that I "just" have a nodule.  The stories that are represented here and elsewhere online give me plenty of perspective.  What I've been thinking about, though, as I've wondered in the last few days what the future will bring is, what will MY story be?  Will these be the only tumors that I deal with?  I'm only 30.  If I have anywhere near an average life expectancy and this disease progresses in the way that I understand it to do so when there are mutations involved it just seems logical to me that there would be more to deal with, though that may not always be the case.  Will there be abdominal paras or Adrenal Pheos?  More tumors in my head and neck?  What about tumors in other places in my body?  If there's more to come, where will they show up?  What twists and turns have I not even dreamed of?

What is astounding to me though is how incredibly lucky, or blessed I am to have found Dr. Pacak and his protocol at NIH and been accepted into his study this early in the game.  I wasn't thrilled with who the Navy referral docs sent me to in the beginning, but I quickly found my way to better options AND with the advice of a couple people (one of them being a Pheo Para Trooper) and a timid email sent I very quickly had Dr. Pacak in my corner!  How incredibly lucky I have been that things have been tweaked here and there just so to get me to the folks who were in the know the first time around.  At 30, with all of this really being my first go-around, even if there is more to the story, I have a team of doctors on my side who will be watching like hawks.  I'll be working with people who see people like me--and people with much more complicated stories like the Pheo Para Troopers featured in these stories--on a daily basis. 

How can I be anything but grateful then?!  Forget gloomy!!!  I got the one in a million luck of going to some of THE LEADING experts on Paras and Pheos when the adjectives describing my ordeal could still be words like, "Just" and "Only."  I haven't seen legions of doctors.  While it felt for a while in the beginning, like I was having to explain my situation a million times to people who didn't fully understand, I've been on this journey less than a year and haven't really seen THAT many people.

In light of that, it only makes sense to shift any of my "Why did *I* have to get these rare tumors?" thinking to, "If I had to get these rare tumors how grateful I am that things aligned themselves just so leading me to one of the best teams possible to see me through this!" 

One in a million luck, every once in a while, is a really great thing to have.  Today, I'm glad I've got it.

Go read these stories.  Find out why the Pheo Para Troopers are such a vital and needed organization.  It's because of these people and others who are allying against these mysterious illnesses that hopefully more and more people are going to get to have luck like I did and find their way to the doctors and treatment that they need immediately and not half-way into their stories.  I'm honored to join the ranks.  I can only hope that I can help other people to be as lucky as I have been somewhere down the line.

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.